Health and Social Development, Faculty of (Okanagan)
DSpace
UBCO
Smith, Jewelles Anne-Merrie
Doctor of Philosophy - PhD
University of British Columbia
Disabled mothers face multiple barriers across the lifespan in accessing information and services related to reproductive and sexual health, and maternal care. Further, disabled mothers face over-surveillance and barriers when raising their children. Despite Canada being a signatory to the CRPD (2006) since 2010, and having legislation that asserts equality for all citizens, many policies, programs and services are inaccessible to women with disabilities. This dissertation takes a unique approach to understanding the experiences of disabled mothers across the lifespan. Combining retroactive qualitative life course history (Priestley, 2000) interviews combined with emancipatory (Barton, 2005) disability human rights monitoring methods (Disability Rights Promotion International, 2010). I ask, from a human rights perspective, what are the experiences of disabled mothers in Canada? How do these experiences impact their daily lives related to reproductive decisions, pregnancy/adoption, and raising children? And, how do women experience access to information about reproductive decisions and choices across the lifespan? Eighteen disabled mothers in two provinces (BC and ON) participated in this research. The data was organized into major life milestones. Five major findings were identified during the research. First, participants consistently faced barriers in accessing factual and accessible information to make informed choices. Second, many spaces that disabled women encounter related to having and raising a family continue to be inaccessible, or only partially accessible. Third, systemic ableism continues to exist both in reproductive, sexual health, and maternal care, and in the spaces where women raise and care for their children. Fourth, once women have a family, affordable, accessible housing and transportation are ongoing barriers. Fifth, many spaces for families, including schools, daycares, and recreational activities are inaccessible to parents with disabilities. Despite legislative rights, disabled women continue to experience barriers to accessing their right to raise a family.
UNDERSTANDING SYSTEMIC BARRIERS ACROSS THE LIFESPAN: A HUMAN RIGHTS INQUIRY INTO DISABILITY AND MOTHERING by Jewelles Anne-Merrie Smith B.A., Simon Fraser University, 2003 M.A., Simon Fraser University, 2007 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE COLLEGE OF GRADUATE STUDIES (Interdisciplinary Studies) THE UNIVERSITY OF BRITISH COLUMBIA (Okanagan) October 2021 © Jewelles Anne-Merrie Smith, 2021 ii The following individuals certify that they have read, and recommend to the College of Graduate Studies for acceptance, a dissertation entitled: Understanding systemic barriers across the lifespan: A human rights inquiry into disability and mothering submitted by Jewelles Smith in partial fulfillment of the requirements of the degree of Doctor of Philosophy. Dr. Rachelle Hole, Faculty of Health and Social Development Supervisor Dr. Leyton Schnellert, Faculty of Education Supervisory Committee Member Dr. Timothy Stainton, Faculty of Arts Supervisory Committee Member Dr. Christine Schreyer, Faculty of Arts University Examiner Dr. Eilionóir Flynn, University of Ireland Galway External Examiner iii Abstract Disabled mothers face multiple barriers across the lifespan in accessing information and services related to reproductive and sexual health, and maternal care. Further, disabled mothers face over-surveillance and barriers when raising their children. Despite Canada being a signatory to the CRPD (2006) since 2010, and having legislation that asserts equality for all citizens, many policies, programs and services are inaccessible to women with disabilities. This dissertation takes a unique approach to understanding the experiences of disabled mothers across the lifespan. Combining retroactive qualitative life course history (Priestley, 2000) interviews combined with emancipatory (Barton, 2005) disability human rights monitoring methods (Disability Rights Promotion International, 2010). I ask, from a human rights perspective, what are the experiences of disabled mothers in Canada? How do these experiences impact their daily lives related to reproductive decisions, pregnancy/adoption, and raising children? And, how do women experience access to information about reproductive decisions and choices across the lifespan? Eighteen disabled mothers in two provinces (BC and ON) participated in this research. The data was organized into major life milestones. Five major findings were identified during the research. First, participants consistently faced barriers in accessing factual and accessible information to make informed choices. Second, many spaces that disabled women encounter related to having and raising a family continue to be inaccessible, or only partially accessible. Third, systemic ableism continues to exist both in reproductive, sexual health, and maternal care, and in the spaces where women raise and care for their children. Fourth, once women have a iv family, affordable, accessible housing and transportation are ongoing barriers. Fifth, many spaces for families, including schools, daycares, and recreational activities are inaccessible to parents with disabilities. Despite legislative rights, disabled women continue to experience barriers to accessing their right to raise a family. v Lay Summary Disabled women encounter barriers across the lifespan in both accessing services and information to make informed decisions about having a family. Further, disabled mothers face ableist attitudes in their interactions with services and programs when raising their children. Finally, disabled mothers face difficulty in finding affordable, safe, accessible housing and transportation. Ableism resulted in disabled parents experiencing oversurveillance from hospital staff, social workers, daycare workers and school authorities. Yet, despite the many barriers and discrimination participants in this study reported, their stories demonstrated resilience and creative solutions to challenges they encountered. Policies, programs and services need to better align with the needs of disabled mothers. Disabled mothers bring strength, resilience, and diversity to their communities, recognizing these contributions and embracing difference within citizenship will not only address the legal rights of disabled Canadians, but also enhance our society. vi Preface This study was approved by the full Behavioural Research Ethics Board of the University of British Columbia Okanagan: UBC BREB certificate number H18-00995. vii Table of Contents Abstract ................................................................................................................................... iii Lay Summary ........................................................................................................................... v Preface .................................................................................................................................... vi Table of Contents ................................................................................................................... vii List of Tables ............................................................................................................................ x List of Figures ......................................................................................................................... xi Acknowledgements ................................................................................................................ xii Dedication ............................................................................................................................. xiv Chapter 1: Introduction Positioning Myself in the Research .................................................. 1 Positioning this Research .............................................................................................. 2 Positioning of Self ................................................................................................. 3 Reflexive Practice ................................................................................................. 3 Philosophical Positioning ...................................................................................... 4 Human Rights Model of Disability .................................................................................. 6 Language and Definition of Disability ........................................................................... 10 Organization of Dissertation by Chapters .................................................................... 10 Chapter 2: Theoretical Framework Critical Disability Theory, Feminist Disability Theory, and Maternal Feminist Theory ............................................................................................ 14 Critical Disability Theory .............................................................................................. 14 A Disabled Feminist Epistemology: Feminist Theory intersects with Disability Studies ..................................................................................................................................... 17 Maternal Feminism: Mothering, Sexual and Reproductive Rights, and Disability ........ 32 Chapter 3: Research Context: Disability and Mothering in Academic Literature .................. 45 Community-Driven Research ....................................................................................... 45 Autoethnographies ....................................................................................................... 52 Custody and Legal Research ....................................................................................... 57 Health-Focused Qualitative Studies ............................................................................. 63 Qualitative Research Outside of Health Research ...................................................... 68 Risk and Outcomes in Health Research: Health Studies ............................................. 72 viii Data Mining and Secondary Analysis of Studies ......................................................... 74 Chapter Summary ........................................................................................................ 78 Chapter 4: Design and Methodology .................................................................................... 80 Research Framework ................................................................................................... 80 Positioning: Emancipatory Research Paradigm ........................................................... 84 A Novel Approach to Human Rights Monitoring: Combining Disability Rights Promotion International with Retroactive Life Course History Methods ........................................ 86 Retroactive Life Course History Methods .................................................................... 86 The Research Project .................................................................................................. 88 Ethical Considerations ........................................................................................ 88 Recruitment, Consent, and Setting up the Interviews ......................................... 89 Semi-Structured, Life History, Narrative Interviews ............................................ 93 Description of Interview Participants ............................................................................ 95 Transcribing ...................................................................................................... 100 Coding: Making Sense of the Interviews in the Context of a Life Course Human Rights Monitoring Project ...................................................................................................... 100 Reflexive Inquiry: Trustworthiness/Validity ........................................................ 103 Chapter 5: Findings Women’s Voices ................................................................................. 106 Introduction ................................................................................................................ 106 Growing Up: Sexual and Reproductive Education, Attitudes, and Messages ........... 107 Adulthood: Sexual Health, Choice and Experiences Prior to Having a Family, including Planning for and Conceiving ...................................................................................... 116 Reproductive Technologies and Fertility Concerns ........................................... 123 Pregnancy and Prenatal Experiences ........................................................................ 132 Access to Childbirth Classes ............................................................................. 133 Midwives and Doulas ........................................................................................ 135 Accessibility and the Embodied Experience of Pregnancy and Disability ......... 138 Labour and Delivery ................................................................................................... 149 Postnatal Experiences ............................................................................................... 157 Breastfeeding .................................................................................................... 165 Adoption ..................................................................................................................... 172 Raising Children ......................................................................................................... 179 Supports and Resources ................................................................................... 180 ix Oversurveillance and Fear of Child Services .................................................... 181 Childcare and Schools ...................................................................................... 190 Housing ............................................................................................................. 195 Transportation ................................................................................................... 199 Conclusions ............................................................................................................... 205 Chapter 6: Discussion Connecting Women’s Voices to the Research ............................... 208 Overview .................................................................................................................... 208 Framing the Research with Human Rights: Connecting to the Literature .................. 209 Combining Two Methods: Retroactive Life History Interviews and Disability Human Rights Monitoring ....................................................................................................... 222 Women’s Narratives Within a Disabled Feminist Materialist Theory ......................... 226 Voice ................................................................................................................. 227 Representation .................................................................................................. 229 The Body: Embodied Experience of Sexual and Reproductive Rights ............. 232 Identity and Activism ......................................................................................... 236 Final Thoughts ........................................................................................................... 240 Chapter 7: Conclusion Learnings, Recommendations, and Future Directions ................... 243 References .......................................................................................................................... 251 Appendix A: Consent Form ................................................................................................. 289 Appendix B: Ethics Certificate ............................................................................................. 296 Appendix C: Recruitment .................................................................................................... 297 Appendix D: Project Information Letter ............................................................................... 299 Appendix E: Participant Identification Form ........................................................................ 301 Appendix F: Interview Guide ............................................................................................... 302 Appendix G: Photographic Release Forms ......................................................................... 313 x List of Tables Table 1: Participants’ Completed Level of Education ........................................................... 95 Table 2: Self-Described Disability ......................................................................................... 96 Table 3: Family of Origin and Current Family Status ............................................................ 97 Table 4: Number of Children ................................................................................................. 98 xi List of Figures Figure 1: Recruitment Poster for General Distribution ........................................................ 296 Figure 2: Poster for Social Media Campaign ...................................................................... 297 xii Acknowledgements Thank you to my supervisor, Dr. Rachelle Hole, for her encouragement and guidance. Her patience and belief in this project were instrumental guiding me through the many stages of academia. I could not have completed this without her feedback through the many rounds of writing and resolving. Thank you to my committee members Dr. Leyton Schnellert and Dr. Timothy Stainton for your feedback and encouragement. And a special thank you to Dr. Pamela Richardson who was on my committee in the early stages. I appreciated all of your insights and thoughtful comments through the process. Thank you to my coach and friend, Catherine North. I could not have made it through these years without you. Your patience and your insights helped me to make sense of a messy thought process. Thank you for choosing me as your project. Thank you to the Disability Centre at UBCO for supporting me behind the scenes in having a more accessible experience, and AT-BC for helping me access software. Thank you to Karyn Huenemann for your editing skills, and for your friendship. There are too many words and memories. I appreciate you so much. Thank you to Reece for helping me with tuition and the financial bits that can overwhelm a solo mom in university. Thank you to Kevin for parallel working with me so many mornings, and for being one of my oldest friends—what a journey we have been through. Thank you to Mellissa for late night encouragement. Thank you Shari, you are newer in my world, however, I would not have completed on time if you had xiii not cleared my work schedule so that I could focus during the last couple weeks of writing. A huge thank you to DaVinci, service dog extraordinaire—I would not have made it through this without you by my side. Thank you to the many friends who purchased paintings at key moments so that I could make ends meet. And I also wish to give enormous thanks to my community. I could not have made it through the many long nights and days without your encouragement and belief that I could finish this. There are too many of you to name here but know that every single one of your messages helped me to reach the finish line. I want to acknowledge the DRPI training and encouragement I received from Dr. Marcia Rioux, rest in power, you have left an enormous hole in the disability rights movement but also have trained a generation of scholars and activists eager to press forward. And finally, I want to thank the mothers who participated in this project and who shared their stories with such honesty. I hope that this dissertation reflects your voices and that your stories help to address the many barriers that disabled mothers face. xiv Dedication This thesis is dedicated to three generations of family. To my sons who challenge and inspire me. In memory of my dad, who loved me unconditionally— I miss you every day and hear your voice encouraging me. In memory of my Oma who always believed in me and who passed away at the start of my academic journey in 2000 and was one of the fiercest women I have known. And in memory of my daughter—there are no words. Chapter 1: Introduction 1 Chapter 1: Introduction Positioning Myself in the Research This dissertation explores the reproductive and sexual health care, and maternal experiences of disabled mothers across the lifespan. Disabled women face multiple barriers to accessing reproductive and sexual health care; as well, they experience barriers and discrimination in actualizing their right to family despite the fact that Canada is a signatory of the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD; UN General Assembly, 2006), which guarantees such rights. Research indicates that disabled women and girls face many barriers to reproductive and sexual health (Mykitiuk & Chadha, 2011; Nosek, 1996; Ridington, 1989), maternal and prenatal care (Blackford et al., 2000; Cooper, 2006; Kuttai, 2010; Tarasoff, 2017), and services and supports to raising their children (Frohmader, 2009; Nielen & Dewhurst, 2014). Further, there is evidence that women and girls with disabilities continue to face forced or coerced sterilization (Frohmader, 2013). Moreover, disabled parents are disproportionally represented in custody court cases (Llewellyn et al., 2003; Westad & McConnell, 2012). This despite the fact that studies demonstrate that disabled parents with adequate supports in place are as capable of raising their children as nondisabled parents (Cowling, 1996; Ehlers-Flint, 2002; McConnell & Llewellyn, 2000; McKeever et al., 2003). Women with disabilities have a legal right in Canada to have and raise a family. Given this, and given Canada is a signatory of the CRPD, it is important to understand the experiences of disabled mothers in light of Canada’s international obligations. Chapter 1: Introduction 2 Informed by feminist disability theories, critical disability theories, and mothering theories as well as a human rights framework, this research focuses on the reproductive and mothering experiences of 18 Canadian women across their life span. Using a human rights approach, this research followed the women’s narratives to identify gaps and barriers the women encountered. By identifying where these gaps and barriers exist, I sought to identify how to improve both the services and information that disabled people need to make decisions and enjoy this aspect of the human experience, and to identify systemic ableism within the many institutions women encounter. By shedding light on these points of disconnection from human rights legislation, this project aims to facilitate change so that all people living with disabilities will be able to make informed decisions about whether to have a family, and how that family will be created, including through natural or supported births, adoption or shared parenting. The research questions guiding this study were: 1. From a human rights perspective, what are the experiences of disabled mothers in Canada? 2. How do these experiences impact their daily lives related to reproductive decisions, pregnancy/adoption, and raising children? 3. How do women experience access to information about reproductive decisions and choices across the lifespan? Positioning this Research In this section I discuss my own positioning; that is, where I come from and where I sit in relation to this research. I next discuss reflexive practice and how this Chapter 1: Introduction 3 guided and defined the findings of this research. Finally, I discuss my philosophical positioning. Positioning of Self My position, experience, values, and principles direct the lens by which I look at my practice. I am a disabled, educated white woman, with a history of childhood abuse, homelessness, and poverty. I am a solo mother of two adult sons. I strongly believe that research must be accessible with a practical application. And now, in the capacity as a PhD candidate, I am a woman who sometimes has power in certain rooms and a voice to push for change. Reflexive Practice Leavy (2017) discusses the importance of philosophical positioning (p. 3), which I would argue is what DRPI (2010) and Article 3 of the CRPD (UN General Assembly, 2006) refer to as values and/or principles. Leavy elaborates on the importance of a researcher’s philosophical stance or their values system; praxis, or the way in which research is conducted; and the role of reflexivity (2017, p. 25). She asks researchers to reflect on how their value systems developed and then how this informs the way in which the researcher conducts their work (2017, p. 25). When I experienced disconnection or discomfort with methods, I returned to my values list and consider why the method is not working for me. This is part of a reflexive practice (Leavy, 2009; Morse & Richards, 2013) and underscores the importance about being transparent about one’s own philosophical positioning when conducting research. Chapter 1: Introduction 4 Philosophical Positioning In preparing for this research project, philosophical positioning is one of the key elements that requires definition (Leavy, 2009). My values and principles that underpinned the project informed the reason why I decided to undertake this project in the first place. They informed the way in which the project was conceived and implemented: they informed my methodological choices and my commitment to centering the women’s stories, and aligned with the reflexive nature of both emancipatory research and Disability Rights Promotion International (DRPI) research. My values are grounded in feminist materialist disability theory and emancipatory disability human rights principles. The emancipatory and human rights based principles of DRPI, resonate with my sensibilities. I often struggle with theory and philosophies that for all intents and purpose are barriers to the groups and individuals being discussed. It is imperative to me that this research have meaningful application for the women that I interviewed and that this dissertation address some of the identified discriminations that participants experienced such as barriers to information about reproductive choices, including: birth control; access to abortion and protection from coerced abortion; and, factual accessible information in an appropriate format. Women also discussed challenges in access to choices about how to become pregnant (e.g., access to reproductive technologies); access to prenatal information and classes; where and who would be present when they delivered (e.g., midwives or doulas); and, appropriate and accessible supports and Chapter 1: Introduction 5 services when raising their children (e.g., housing, transportation, daycares, schools). I committed to and wanted the women who participated to have autonomy in telling their stories, and that my role was to bear witness and document their stories of mothering with their words using methods of communication that respected their abilities and perspectives. Specifically, I echo Rioux et al. (2011) who wrote, “Women with disabilities have inherent dignity and worth and are entitled to equal access and opportunity to supports and services that meaningfully enable their full participation in intimate relations and social inclusion” (p. 199). This applies to research conducted by and with women with disabilities. As Morris (1991) writes: The disability movement [and research] needs to take on the feminist principle that the personal is political, and in giving voice to such subjective experiences, assert the value of our lives. We can insist that society disables us by its prejudice and by its failure to meet the needs created by disability, but to deny the personal experience of disability is, in the end, to collude in our own oppression. (p. 183) Further, the CRPD (UN General Assembly, 2006) outlines its key principles in Article 3 of the document. DRPI has grounded their work in five of these principles (Rioux et al., 2015): • dignity; • autonomy; • inclusion, participation and accommodation; • equality and nondiscrimination; and Chapter 1: Introduction 6 • respect for difference. It is with these principles in mind, framed within an emancipatory paradigm, that I conducted my project. Barton (2005) argues that disabled scholars and disability organizations are demanding that research be useful, relevant, and “explicitly concerned with issues of social justice, equity and citizenship” (p. 318). This means that research is not neutral and is, in fact, inherently political (Barton, 2005, p. 318). Barton further argues that research needs to engage in the struggle for change, for example, by addressing “material and ideological barriers to participation” (Barton, 2005, p. 318). Emancipatory research is “essentially transformative, informative, contributing to the collective experience” (Barton, 2005, p. 318; see also Abberley, 1992; Barnes, 1996; Morris, 1992; Oliver, 1997; Shakespeare & Watson, 2002). As such, understanding the principles and values that I hold are imperative, as these principles and values were embedded throughout the project (DRPI, 2010, 2013). To that end, this project is quite personal as well as political, and it is connected to the larger, very diverse population of disabled mothers. Human Rights Model of Disability This project was guided by the human rights model of disability. The human rights model argues that people with disabilities are rights holders and, as such, deserve to have the same rights and access to all aspects of life as other groups in society (Degener, 2016a; UN General Assembly, 2006). Rioux (2009) argues that this model repositions people with disability: Chapter 1: Introduction 7 Over the past 20 years, the paradigm of disability has shifted from a medical welfare model to a human rights model. The rights paradigm recognizes non-discrimination and equality rather than goodwill as the goals of liberation and inclusion struggle. [ … ] In particular, segregation and institutionalisation, which have been the hallmark of disability policy, are seen in the context of racial segregation and apartheid. (p. 203) The human rights model of disability has been developed by people with disabilities for the most part. Rioux explains, “[The human rights model] recognizes that disability is not only the result of the individual impairment, but is the result of the interaction between individuals and the environment that is not intended or designed for them” (p. 204). The human rights model further gives a theorist, researcher or activist access to language that explains the misalignments between models and jurisprudence (Abrams, 2011; Silvers, 2016). Chouinard (2009) suggests: In practice disabled citizens’ capacities to exercise legal rights are compromised by their peripheral place within law, society and space. These embodied places of citizenship, in which differences of class, gender, race, sexuality and ability come into play in determining whether, where and how fully legal rights can be asserted in practice. (p. 224) Connecting the experiences of disabled mothers to rights, and unravelling the many ways that individuals encounter the legal system, can challenge assumptions within current systems and institutions. Chouinard further explains: Chapter 1: Introduction 8 Disabled people’s economic places in society and space greatly limit their capacities to assert rights won under Canadian Law. These locations, in the economic underclass (Barile, 1993), are gendered ones, with disabled women especially likely to live in conditions of poverty, exclusion from paid work, and inability to cover costs of basics such as food. These are places of “Shadow Citizenship” in which rights enjoyed in principle are difficult or impossible to exercise in practice. (2009, p. 221) Due to prejudicial and ableist beliefs about disabled experiences held by people in positions of authority, many disability activists believe women continue to encounter barriers to basic rights and access to services. Until this disconnection between the law and outcomes is addressed within these institutions, disabled mothers will continue to experience discrimination. Rioux (2009) writes: The model developed by the disability rights movement is grounded in a framework of social pathology (Rioux, 1997), and recognizes and gives attention to the effect of the environment and the social structure on the consequent disability of an individual. (p. 204) The framework of “social pathology” Rioux refers to results from the medical model of disability. Degener (2016b) raises some strong points as to why the medical model is dangerous and many states struggled to embrace and enact the human rights framework. She writes: Another feature of the medical model of disability is that is based on two assumptions that have a dangerous impact on human rights: (1) Disabled Chapter 1: Introduction 9 persons need to have shelter and welfare and (2) Impairment can foreclose legal capacity. The first assumption legitimizes segregated facilities for disabled persons, such as special schools, living institutions and sheltered workshops. The second assumption has led to the creation of mental health and guardianship laws that take an incapacity approach to disability. (2016ab, p. 33) The human rights model has the potential to challenge these assumptions. Quinn and Degener (2002) write: “The human rights model focuses on the inherent dignity of the human being and … It places the individual centre stage in all decisions affecting him/her and most importantly, locates the main ‘problem’ outside the person and in society” (p. 14). In developing my own project, I relied on the human rights model to guide my understanding of disabled women’s life history narratives. Many disabled scholars use the social model of disability (Oliver, 2009; Shakespere, 2013), and I discuss how that model informs research including outcomes in Chapter 6. However, many policies, legislation and practices operate within the medical (Mykitiuk & Chadha, 2011; Titchosky, 2011) and charity models (Clare, 2001). Understanding these distinctions in models, and the historical construction of disability, I believe, reveal bias and uncover some of the roots of discrimination for disabled mothers. These models can be used to created tools that help us critically examine policies, laws and practices, and these tools can be used to inform recommendations, identify gaps and suggest changes to current policies and practices. Therefore, although I embed my own research in human rights, I discuss in later chapters how the other Chapter 1: Introduction 10 models create tensions between civil rights on paper versus actualizing these rights in practice. Language and Definition of Disability Throughout this dissertation, I use terms and phrases such as “person with disabilities” or “women with disabilities” (known as people first language) (Titchkosky, 2008) and also “disabled mothers” or “disabled woman” (known as identity first language) (Malhotra & Rowe, 2014). When presenting the findings drawing on the women’s stories, I defer to the women’s preferences whenever possible—e.g., directly quoting the language they used during the interview process. The women who participated in this project identified as female, mother, and woman. Within this project, I have used the definition of disability as established in the CRPD (UN General Assembly, 2006): “persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” (Art. 1). However, it is of note that many Canadian laws, policies and programs define disability differently, and often inconsistently. Organization of Dissertation by Chapters The section below provides brief descriptions of the chapters in this dissertation. I begin with Chapter 1, Introduction: Positioning Myself in the Research; then Chapter 2, Theoretical Framework: Critical Disability Theory, Feminist Disability Theory, and Maternal Feminist Theory; Chapter 3, Research Context: Disability and Chapter 1: Introduction 11 Mothering in Academic Literature; Chapter 4, Design and methodology; Chapter 5, Findings: Women’s Voices; Chapter 6, Discussion: Extending Women’s Voices to the Research; and Chapter 7, Conclusion: Learnings, Recommendations and Future Directions. In this chapter, Chapter 1, I have provided an introduction to the project, and presented the topic of the present study of mothering and disability, position myself, my philosophical and theoretical paradigm, and research questions. I have provided a brief overview of some of the barriers that disabled women encounter across the lifespan related to their journey to becoming mothers. I have positioned myself as a disabled feminist scholar and have described how the study is embedded in and informed by a human rights model of disability. In Chapter 2, I discuss the theoretical paradigm that has informed this research. In particular, I focus on my positioning within critical disability theory (CDT; Goodley et al., 2019; Hosking, 2008); a disabled feminist epistemology (Garland-Thompson, 2011); materialist feminist theory (e.g., Fausto-Sterling, 2000; E. Keller, 2002); and embodied disability theory (Clare, 1999; Mitchell & Snyder, 2006; Schweik, 2009; Scully, 2008; Siebers, 2008); Human rights theory of maternal rights (Frohmader, 2007; Mykitiuk & Chadha, 2011; Ridington, 1989); and maternal feminist theories (O’Reilly, 2008; Rich, 1986). This chapter explores how weaving these theories together establishes a materialist disabled feminist theoretical framework grounded in human rights. This lays the groundwork for this study to address the multiple ways in which disabled women encounter barriers across the life span in their journey to motherhood. Chapter 1: Introduction 12 In Chapter 3, I contextualize the literature about disabled mothers, including literature that discusses reproductive and sexual health of disabled women. The literature on this topic extends into many disciplines, including, social work, health, social sciences, gender and women’s studies, and disability studies. I also include research conducted by significant feminist and disability organizations. Chapter 4 presents the methodologies that informed this project, specifically how I adapted DRPI methodologies of human rights monitoring with retroactive qualitative life history interview methodologies. I describe how the combination of these two methodologies create a unique way to document how disabled women experience their reproductive and sexual rights across the lifespan, and how they navigate decisions in their journey to creating a family. I describe the recruitment and demographics of participants. I then discuss how I conducted human rights narrative interviews, including recording, transcribing, and coding. I then describe how I organized the data into key life milestones. Finally, I discuss the analysis methods and introduce four themes that arose for most participants across the interviews (embodiment, relationships, oversurveillance, and trauma). In Chapter 5, I share the findings derived through analysis. The women’s narratives are organized across five key milestones: growing up/childhood; young adulthood/life before having children; pregnancy, prenatal experiences and adoption; labour, delivery, and postnatal experiences; and raising children. The women’s narratives are discussed in the context of human rights principles, including accessibility, dignity, and choice. Chapter 1: Introduction 13 In Chapter 6, I examine how findings in this study were influenced by methodological choices. I then discuss and connect the findings to broader literature and research. I then frame the research findings in the context of human rights monitoring. I then discuss how using a materialist disabled feminist theoretical positioning impacted the research, and how these findings are important to scholarly study, especially in the context of voice, representation, the body, and identity and activism. In Chapter 7, I conclude and discuss this project. I then make recommendations for future considerations, especially in how this research can inform addressing ableism, discrimination and barriers to people with disabilities in making informed choices related to the creation of a family. I also discuss limitations and contributions of the findings and methodology to feminist disability research. And finally, I provide some of the next steps of my own work. Chapter 2: Theoretical Framework 14 Chapter 2: Theoretical Framework Critical Disability Theory, Feminist Disability Theory, and Maternal Feminist Theory In this chapter, I provide an overview of CDT (Critical Disability Theory), and then connect this theory to a disabled feminist epistemology within material and maternal feminist theories. I position myself in the research, and situate my research into a larger context of disabled feminist emancipatory research. Critical Disability Theory CDT and disability studies are vast interdisciplinary fields with multiple theoretical approaches. As noted by Goodley et al. (2019), CDT is an “interdisciplinary field built upon the early work of disability studies and produced a body of contemporary knowledge that boasts sophistication and nuance” (p. 974). In this chapter, I draw on particular theorists to demonstrate and discuss my own theoretical positioning. I do not give a full history of the critical disability theorists, but rather, I acknowledge the ones that explicitly speak to this particular research project. More than three decades of research have informed disability studies, and increasingly, disability scholars have moved disability studies progressively towards a more succinct understanding of disability through a critical lens (e.g., Barnes, 1991; Barnes & Mercer, 1997, 2004; Barnes et al., 1999; Davis, 1995; Garland-Thomson, 1997; Morris, 1996; Oliver & Barnes, 2012; Thomas, 1999, 2008; Wendell, 1996). The interdisciplinary nature of CDT establishes a praxis wherein complex experiences—like those of disabled mothers—can be discussed and theorized. Goodley et al. (2019) called the potential of this area of study a Chapter 2: Theoretical Framework 15 “smorgasbord of perspectives drawn from inside and outside of the disability experience” (p. 974). I emphatically agree. The opportunity to bring in both insider and outsider perspectives allows for an understudied area, such as disabled maternal experiences, to be discussed drawing on diverse theorists (e.g., feminist, mothering and maternal, material feminists, Marxist, embodiment). However, there are definitely key components to any study that aligns itself with CDT. Hosking pulled together seven of these key elements in a talk he gave in 2008. The seven elements established by Hosking (2008) are in fact the landmarks around which I built my research, including both the methodological and theoretical components. The seven elements of CDT are “the social model of disability, multidimensionality, valuing diversity, rights, voices of disability, language and transformative politics” (Hosking, 2008, p. 5). With respect to the social model of disability, it is important to note that the CDT version of this model is slightly different than what is traditionally understood in the social model. In fact, Hosking admonishes that “a complete account of disability must incorporate the personal experience of impairment and illness” (2008, p. 7). In the second element, multidimensionality, Hosking explains that in CDT there is a more complex and nuanced understanding of intersectionality that seeks to address challenges inherent in identity politics. He writes: “Recognizing that everyone is multidimensional allows for structural analysis of society while recognizing that every group is made up of multidimensional members” (2008, p. 10). The third element of CDT is valuing diversity. One of the points that Hosking (2008) discusses is the erasure of particular experiences of disability. He argues that Chapter 2: Theoretical Framework 16 “any systemic response to disability which purports to make disability invisible is inherently incapable of effectively protecting the rights of disabled people to be full participants in their communities” (2008, p. 11). Equality does not necessarily align with “the same as” in order to achieve equity or equality, rather, a full understanding of difference and what an individual requires to fully participate is prioritized. The fourth element, rights, focuses on legal rights and the need to advance full inclusion of persons with disabilities into society. CDT recognizes tensions between several political schools and is used “to expose the ways in which liberal rights theory has failed to respond adequately to needs and interests of disabled people individually and collectively by failing to incorporate the diversity of the disabled community” (Hosking, 2008, p. 12). This builds on the previous component, in that full inclusion is not achieved by treating everyone exactly the same, and wherein substantive equality becomes a rod by which to intervene for true inclusion and full citizenship. The fifth element that Hosking (2008) identifies is voice. CDT explicitly privileges the experiences of disabled people: “it is only by listening to and valuing the perspectives of those who are living disabled lives that the able-bodied can begin to understand” (Hosking, 2008, p. 13) the value of their lives. The sixth element that Hosking identifies is that of language. CDT recognizes the political nature of and ideological implications of language (Hosking, 2008, p. 13). Over time, disability activists have reclaimed and re-labelled themselves multiple times in an effort to reduce the negative impacts of language. Examples include but are not limited to using and insisting on people first language, identifying with CRIP culture, and using terminology such as “DisAbled women”, “differently abled”, and Chapter 2: Theoretical Framework 17 “diversibility.” As Hosking writes, “the words and images used to portray disabled people … have a direct effect on societal attitudes towards disabled people” (2008, p.14). The final element that Hosking (2008) identifies in CDT is that of transformative politics. Although he lists this as the final element, I believe it is the most critical one and underpins the actual paradigm within which a CDT project is constructed. The goal of CDT is “theorization in the pursuit of empowerment and substantive, not just formal, equality” (Hosking, 2008, p. 15) (see also Devlin & Pothier, 2006). For this project, transformative politics is explicitly defined within an emancipatory paradigm (Barnes, 2001, 2003; Barnes & Mercer, 1997; Barton, 2005; Carmichael, 2004; Flynn et al., 2004; Freire, 2006; Oliver, 1992, 1997, 2002; Rioux & Valentine, 2005; Rioux et al., 2015; Salie, 2015; Samson, 2015; Ward, 1997). Although this is only a brief overview of Hosking’s CDT elements, it provides a guide to choices I have made in both my theoretical and methodological positioning. Next, I discuss an overview of my philosophical position related to both CDT and feminist principles. A Disabled Feminist Epistemology: Feminist Theory intersects with Disability Studies Feminist studies have long engaged in dialogue critiquing the normalization of categories of gender, class, race, and sexuality. Both queer and feminist studies have begun to engage in dialogue related to the category of disability “as a pervasive cultural system that stigmatizes certain kinds of bodily variations” (Garland-Thomson, 2002, p. 17). Given my research focuses on disabled women’s Chapter 2: Theoretical Framework 18 reproductive experiences, the body is central to this work. In discussing how society engages with disabled mothers, it is important to understand how some theorists dismiss the body and others engage in feminist materialist theories (Fausto-Sterling, 2000; Garland-Thomson, 2011; Grosz, 1994; Haraway, 2003; Harding, 1986; E. Keller, 2002; Wilson, 2004) and still others have developed a disability embodiment theory (Clare, 1999; Mitchell & Snyder, 2006; Schweik, 2009; Scully, 2008; Siebers, 2008). I draw on feminist disability theory as described by Garland-Thomson (2005), wherein a feminist disability study not only unsettles stereotypes but also “seeks to challenge our dominant assumptions about living with a disability” (p. 1557). She investigates disability narratives in “the context of rights and exclusions” and challenges scholars to “retrieve dismissed voices and misrepresented experiences” (Garland-Thomson, 2005, p. 1557). The combined theoretical approach of feminist and critical disability theories strengthened my research, especially as I engaged with a group of participants who experience unequal treatment as both women and as disabled. In asserting for an integration of these two areas of study, Garland-Thomson (2002) argues: the most sophisticated and nuanced analyses of disability, in my view, come from scholars conversant with feminist theory. And the most compelling and complex analyses of gender intersectionality take into consideration what I call the ability/disability system-along with race, ethnicity, sexuality, and class. (p. 2) Chapter 2: Theoretical Framework 19 The nuanced and more complex understanding of issues explored by integrating these two areas of study strengthened my research by providing a rich framework to guide my work. Several feminist theorists began to focus on the intersections of disability and feminist theory in the 1990s, most notably Garland-Thomson (1997, 1999, 2002, 2005, 2009, 2011, 2013), Morris (1991, 1992, 2001), and Wendell (1989, 1996, 2010). Many of these academics drew from the work of Foucault and other feminist writers. Although some French theorists (e.g. Foucault, Lacan, and Deleuze & Guattari) informed the work of theorists that I draw from, I have concentrated on the feminist and disability theorists who have taken these theorists’ work explicitly in new directions in order to examine the experiences of women, disability, and mothering. For the purposes of my work, I reference this third generation of Foucauldian scholars, not Foucault’s work directly (while noting that I have read his work). I will first discuss the works of several theorists who focus on disability. That said, I will then delve deeper into the theories and concepts of Garland-Thomson, whose work is one of the few to explicitly integrate feminist theory with disability theory. She developed such concepts as “Extraordinary” bodies (1996, 1997); the “Normate” (1997, 2002); “the Stare” (2009); “Freakery” (1996); and “Misfitting” (2011). Many of these concepts can be used to understand the experience of disabled mothers. I further complicate these theories by intersecting them with human rights, disability, and mothering theories. In critiquing theories on disability and mothering, Garland-Thomson’s (2013) four critical areas of a feminist disability study—representation, the body, identity, Chapter 2: Theoretical Framework 20 and activism (pp. 336–351)—can be used as a reference to gauge whether research holds up under scrutiny. Representation plays a critical role in the way in which disabled mothers are viewed by, and engaged within, society, and how society responds to them. In fact, what the media portrays, how disability and mothering are represented or how they remain invisible, has a direct impact on the way in which everyone from family members to social workers to hospital staff respond when encountering disabled mothers. Activism, which I connect to the emancipatory paradigm, is also a critical aspect of any feminist disability project (Boucher & Fiset, 2015; Oliver, 1997; Rioux, 2011; Samson, 2015). For example, how a project or how theory has the potential to make substantive change in the lives of people with disabilities is paramount to any project that calls itself a feminist disability project. With respect to the concept of identity, identity politics have been hotly contested in the disability movement over the last few decades. Siebers (2008) notes that “identity is, properly defined, an epistemological construction that contains a broad array of theories about navigating social environments” (p. 15; see also Alcoff, 2006; Castells, 2004) The tensions and arguments within disability studies and within the disability movement regarding disability as an identity category are important as disability as an identity has both the potential to organize people for change and to further segregate individuals who society labels. As I share later, many of the women interviewed in this study discussed their own relationship to a disabled identity. Chapter 2: Theoretical Framework 21 Garland-Thompson (2011) explores and challenges the implications of identity, the body, and how disabled bodies interact and navigate the world they live in, in particular the implications for individuals at the intersection of woman and disability. Further, she argues that complicating these categories at the intersections, especially at the intersection of critical disability studies and the feminist theories can create a new “theoretical shorthand [that] impels us to reconsider how identity categories cut across and redefine one another, pressuring both the terms woman and disabled” (2011, p. 34). She acknowledges that “our culture offers profound disincentives and few rewards to identifying as disabled” (2011, p. 35). In fact, Garland-Thompson discusses the benefits to some disabled bodies and their ability to “pass” (2011, p. 34–35), and suggests that for many, the ability to pass as nondisabled might be seductive. That said, Garland-Thompson cautions: Nevertheless, by disavowing disability identity, many of us learned to save ourselves from devaluation by a complicity that perpetuates oppressive notions about ostensibly real disabled people. Thus, together we help to make the alternately menacing and pathetic cultural figures who rattled tin cups arrayed on the street corners become figures from which we with impairments often flee more surely than those who imagine themselves as nondisabled. (2011, p. 35) As such, passing or the “ability to pass” is an important concept related to a disabled identity. When framed in the context of a human rights model, identity politics has the potential to empower and organize categories or groups of people. As Degener Chapter 2: Theoretical Framework 22 (2016a) argues, “identity politics can be defined as politics which values and cares for differences among human beings and allows persons to identify positively with features which are disrespected in society” (p. 41). This shifting between invisibility and oversurveillance, or what Garland-Thompson (2011) coins as the relationship of “the Stare” has implications for mothers with disabilities in ways that have higher stakes than other situations: Invisibility offers the opportunity to fly under the radar and get on with the experiences of mothering without drawing the negative attention (oversurveillance) of institutions, however, invisibility also creates a disconnection from access and the ability to signal the need for accommodation and supports in duties related to mothering. Further, visibility has the potential to connect mothers and creates a space of organizing and of sharing resources. There are disagreements among disability scholars on the importance of identity politics. While not everyone has the ability to remain invisible, and especially when we consider the importance of accessing services and resources, I would argue that identity as a disabled mother has the potential for action and strength in numbers. That said, there is always a need for caution in a society that assumes that only certain types of bodies should procreate and/or be responsible for children and raise a family. Siebers (2013) grapples with the contradictions between the strengths of identity politics and the difficulties. He writes: My argument here takes issue with those who believe that identity politics either springs from disability or disables people for viable political action. I offer a defense of identity politics and a counter argument to the idea [ … ] that suffering produces weak identities both enforces the ideology of ability Chapter 2: Theoretical Framework 23 and demonstrates a profound misunderstanding of disability: disability is not a pathological condition, only analyzable via individual psychology, but a social location complexly embodied. (p. 283) Similarly, Garland-Thomson (1997) argues that people with disabilities are political minorities and as such are able to address discrimination from this position. However, others argue that identity politics have a negative impact. Siebers (2008) writes: “Opponents of identity politics often argue that identity politics preserves the identities created by oppression: these identities are born of suffering, and embracing them supposedly represents a form of self-victimization” (p. 19). I understand and agree with some of the critiques within the disability community regarding how identity politics may further alienate people with disabilities. However, I have personally seen how community organizing has the ability to affect change, and how a category of disability that is inclusive, such as is defined in the CRPD (UN General Assembly, 2006), can bring formerly isolated individuals together to advocate for change. In particular, I believe this category has the ability to bring disabled mothers together, and in fact, I heard from women about the power of connecting to other women with similar disabilities who are raising families (discussed later). I relate with Linton (1998): how connections made within the disability movement are “a source of identity, motivation, and information” (p. 5). Finally, as Siebers (2008) goes on to argue: identity is not the structure that creates a person’s pristine individuality or inner essence but the structure by which that person identifies and becomes identified with a set of social narratives, ideas, myth and verifiability values. [ Chapter 2: Theoretical Framework 24 …] It also represents the capacity to belong to a collective on the basis not merely of biological tendencies but symbolic ones. (p. 15) Thus, while contentious, the concept of identity and identity politics has utility and is useful to understanding the experiences of disability and mothering. Identity as disabled mother can be, as described by Garland-Thomson’s (2011) that of “misfit”: The individual and collective experience of misfitting can produce the subjugated knowledge, outsider/insider standpoint, or privileged epistemic state from which one could launch a liberatory identity politics. [ …] The mediation of experience through theory … occurs materially in misfitting, creating the potential for a politicized consciousness, and epistemic epiphany regarding the relativity of exclusions that the status quo explains as natural or essential arises as inherent inferiority. (p. 601) The power of concepts like misfit in discussing the lived and embodied experience of disabled parenting expands the conversation of mothering as disabled from an individual experience of managing day-to-day as a mother in an able-bodied society to that of a powerful conversation within “a politicized consciousness” (Garland-Thompson, 2011, p. 601). Again, the power of rallying within an identity framed within a human rights context has the power to look at the system to address barriers and discrimination as a collective group. Further, privileging misfitting as a potential identity or political experience, pries open binary assumptions of “natural” versus “inferior”, and especially when connecting this to disabled mothering bodies, creates a political and human rights Chapter 2: Theoretical Framework 25 awareness of misfitting. Garland-Thomson (2011) links her concept of “misfits” to an argument for a feminist materialist approach to disability, and makes three arguments in favour of this feminist materialist disability concept. These arguments are as follows. “First, the concept of misfit emphasizes the particularity of varying lived embodiments and avoids a theoretical generic disabled body they can dematerialize if social and architectural barriers no longer disable it” (Garland-Thompson, 2011, p. 592). Secondly, she maintains, “the concept of misfit clarifies the current feminist critical conversation about universal vulnerability and dependence” (2011, p. 592). Being able to explicitly address the failures of feminist theories to embrace disability and understand how disabled bodies are oppressed within current systems, one must address issues related to how disabled bodies are discussed, understood, and devalued. No bodies are fully independent or dependent, neither are they fully vulnerable or fully protected or secure. Finally, Garland-Thomson contends that “the concept of misfitting as a shifting spatial and perpetually temporal relationship confers agency and value on disabled subjects at risk of social devaluation by highlighting adaptability, resourcefulness, and subjugated knowledge as potential effects of misfitting” (2011, p. 592). Garland-Thompson is intersecting or integrating where disability studies and feminist studies have previously neglected to specifically meet—the intersection between feminist materialist studies and critical disability studies. These connections help researchers to understand the ways in which disabled women’s bodies are perceived in public spaces, connected to expectations of disabled women, and the roles they are not represented in (specifically mothering). Chapter 2: Theoretical Framework 26 The idea of a misfit in the situation of misfitting that I offer here elaborates a materialist feminist understanding of disability by extending a consideration of how the particularities of embodiment interact with their environment in its broadest sense, to include both its spatial and temporal aspects. (Garland-Thomson, 2011, p. 592) Although a couple theorists have taken up this concept of misfitting, including one who has connected to parenting disabled children (e.g., Robertson, 2014), there are no researchers who are explicitly connecting this concept to disabled mothers. The connection between the embodied and the political in the idea of misfit, I believe, can help theoretically navigate the complexities of understanding and addressing systemic discrimination that is experienced by this particular population, in particular, how women experience all aspects of disabled mothering beyond legislation and ramps. Linking disability embodiment theory to research on disabled mothers, I believe is a critical connection to make. We cannot talk about the experiences of disabled mothers without discussing how their material, or embodied experience impact both their daily lives, and how society perceives them. There are definite connections to make between work being done by feminists in materialist studies (Delphy, 1980; Hennessy, 1993; Jackson, 2001) and work being done by disability theorists in embodiment theory (Clare, 1999; Mitchell & Snyder, 2006; Schweik, 2009; Scully, 2008; Siebers, 2008). Much of the embodiment theory work came about through criticisms of the social model, and its lack of connection to how the physical body impacts daily living for many in the community—sometimes it is more Chapter 2: Theoretical Framework 27 than just a ramp to address inequality (Driedger et al., 2004; Michalko, 2009; Morris, 1991, 1992, 2001; Siebers, 2008; Wendell, 1989, 1996). This is further stretched by understanding pregnant, lactating, and caregiving disabled bodies. Materialist feminists make explicit connections between female labour, capitalism, and oppression (Y. Taylor, 2009; Waring, 2004). As Y. Taylor (2009) writes, “material feminism variously highlights the centrality of capitalism in understanding women’s oppression and continues to foreground transformative social change rather than, for example, seeking reforms and concessions within the capitalist system” (p. 2). While followers of Marx critiqued the impact of capitalism and class on labouring bodies, criticisms from feminists argue that he forgot about women’s bodies and women’s labour. Theorists such as Waring (2004) argue that under a capitalist society, women’s work—such as housework, childbirth, childcare, eldercare, or food preparation—is not counted and therefore not valued. I would argue, however, that this is further problematized when you insert disabled women’s bodies. Under the charity and medical models of disability there are presumptions in our society either that family (usually women) will provide care for disabled members of the family, or that government or institutions will fund (able-bodied) caregivers for disabled people in our community. Human rights activists have argued that these provisions of care funded by the state allow (inter)dependence and inclusion in communities. That said, when the same disabled women who require caregiver support in their homes or in the community to become mothers and request services to facilitate their mothering, there are tensions in providing that support. This is due to the fact that in a capitalist society, women’s work or labour is assumed and Chapter 2: Theoretical Framework 28 provided without remuneration—and as Waring argues, remains uncounted within. Despite provisions in many communities for some support or caregiver services, child care is assumed to be a choice and an independent task in a neoliberal capitalist society. By intersecting materialist feminist theories with disability embodiment theories, and utilizing the misfit as defined by Garland-Thomson (2011), we can begin to untangle the contradictions within societal responses to disabled mothers: In other words, the experience of misfitting, if it is theoretically mediated, structures the narrative aspect of identity and is structured by the material world. Misfitting has explanatory power to produce a coherent narrative of how inferiority is assigned in literal marginalization takes place. (p. 601) Misfitting explains one way of looking at inequality and how much more is at play when we explore the inability of the social model to fully explain the impact of society, attitudes, and human rights. Misfitting also initiates a lens under which to examine how society interacts with disabled women who are mothers. The absence of a specific group from both theory and policy reinforces inequalities: “In other words, inequality occurs not purely from prejudicial attitudes but is an artifact of material configurations misfitting with bodies” (Garland-Thompson, 2011, p. 602). This connection between materialist and embodiment theories is critical. Understanding how both the physical body and the relationship it has within society, and how capitalism and the devaluing of women’s labour impact disabled mothers is the crux of understanding experiences of disabled mothers. Contextualizing this research within a materialist feminist disability understanding of embodied lived Chapter 2: Theoretical Framework 29 experience reveals the implications of invisibility within these systems. By drawing this intersectional understanding of theory and embodied experience, we are better able to understand the human rights implications of systemic and institutional discrimination, and then ask: “how they relate to enforce systems of exclusion and oppression, attacking the widespread belief that having an able body and mind determines whether one is a quality human being” (Siebers, 2008, p. 4). Who in our society is a “quality human being” and who is encouraged or discouraged to reproduce is at the heart of understanding any theory on disabled mothering. The body is not outside history and is impacted directly by legislation, policy, medical projects related to so-called advancements in science, and it is also impacted by resistance. Foucault (1995) articulates the relationship between the body, economic considerations and power: The body is also directly involved in a political field … The political investment of the body is bound up, in accordance with complex reciprocal relations, with economic value; it is largely as a force of production that the body is invested with relations of power and domination [ … ] the body becomes a useful force only if it is both a productive body and a subjected body. (pp. 25–26) In many cases, disabled mothering bodies exist outside this paradigm of labour and usefulness as defined by current systems of capitalist labour. As indicated by Waring (2004), much of women’s labour remains uncounted by capitalist systems, despite these systems explicitly relying upon this uncounted labour to function. Disabled women’s role as mothers, especially those mothers who rely upon extra supports to produce this labour, disrupts this unpaid and uncounted, often invisible labour. In Chapter 2: Theoretical Framework 30 attending to disabled mothers, we suddenly see a need to pay for childcare labour, not as a function of employment, but as a human right resource in order to allow free choice as a human to have a raise a family (see UN General Assembly, 2006, Article 23). The tensions between a capitalist system and a human rights system erupt at the junction of disabled body and the right to parent. Disability represents other and is “a diacritical marker of difference that secures inferior, marginal, or minority status, while not having its presence as a marker acknowledged in that process” (Siebers, 2008, p. 6). When disabled individuals assert their right to parent, they challenge this invisibility and insist upon having a presence in a system that was not built to support their full and fulfilled rights to full citizenship. Identity intersections such as disabled and mother represent a misfit in society because disability is not recognized in connection with reproduction, and the labour of mothering is not counted or paid for in a capitalist system. Embodiment theory has the potential to engage and enhance the idea of “Misfit” (Garland-Thomson, 2011). Understanding and challenging the spaces that disabled mothers encounter and the impact on their experiences is a difficult task. The social model would have us understand encounters between disabled mothers and institutions (such as schools, daycares, hospitals, social workers, and legal systems) as a problem that can be addressed by creating a more accessible community by addressing the barriers these women face. The human rights model would have us understand discrimination, unjustified and intrusive surveillance, and interference or lack of appropriate accommodations as a legal problem. Both models lack a full reflection of disabled mothering. Chapter 2: Theoretical Framework 31 When understood within the context Garland-Thomson’s (2011) theories of the Misfit, we can begin to pull together language to understand how women navigate their communities as mothers and why experiencing this embodied misalignment is such a challenge for them. We cannot remove the body from the experience of raising children, for it is explicitly with labour of the body, and with how society makes disabled women either invisible or suspect depending on their perceived capacity by which, I argue, disabled mothers do not measure up. Further, as explained above, the material work of mothering is done primarily by mothers. Mothers who may require assistance to conduct this day-to-day labour are often challenged on their “right” to reproduce and raise their family because society sees this work as invisible and without value. By not counting women’s caregiving labour, society does not have a system set up of supports for women who require more than what a capitalist patriarchal society believes they should have (Waring, 2004). Further, when women do use resources from the state, they are often subjected to increased surveillance. It can be argued, as described by Foucault (1995), that institutions encourage society as a whole to invoke surveillance/power/discipline on mothers (C. Taylor, 2012) and, in particular, on disabled mothers. Mother surveying mother is an extension of women policing women, which is reinforced by patriarchy and colonization of women’s bodies as a means of control (Logan, 2012). Often disabled mothers attempt to appear to be super moms when in public in order to avoid interactions with institutions (O’Donovan, 2011). So-called “infractions” that a typical mother might encounter would evoke laughter; however, a disabled mother is hyper-vigilant to keep secret or Chapter 2: Theoretical Framework 32 to explain any behaviour that is outside the norm, and even can risk interventions by social workers or other institutions (Khoo et al., 2003; McConnell & Lllewellyn, 2000; Track, 2014). It is important to recognize ways in which mothers might resist these assumptions and how misfitting and what Garland-Thomson (2009) has termed “the Stare” have the potential to empower women to challenge assumptions about their right to reproduce and/or mother, and their ability to effectively mother. For many women with disabilities, prior to becoming mothers, they may have been invisible in many circumstances. Disabled women are often not seen as desirable or sexual (Shakespeare et al., 1996) and often are not subject to the unwanted sexual attention that many feminists have written about, neither are they subjected to what Mulvey (1999) termed the “male gaze” (Bobo, 1995; Kaplan, 1997; Mayne, 2000; Silverman, 1992; Straayer, 1996). This idea asserts that women are presented passively for men to look at. But “the Stare” is important to materialist feminist disability theory. Garland-Thomson (2009) argues that people with disabilities engage with “looking” in a much different manner. However, before discussing her theory of “the Stare,” I think it is important to address the complications and contradictions within this understanding of disabled women’s bodies. Maternal Feminism: Mothering, Sexual and Reproductive Rights, and Disability Feminists speak to theories of motherhood and mothering; however, they rarely mention the disabled mother in their litany of “other” mothers. Disabled researchers and critical disability theorists rarely speak of the experiences of women but even more rarely do they also speak about the role of mothering and living with Chapter 2: Theoretical Framework 33 disability. There are tensions in the literature between feminists who criticize the sexualization of women, and seek to disrupt traditional societal roles for women (such as mother); and disabled women who counter that they want to participate and be seen in traditional roles such as mother, lover, and sexual being. Understanding how modern ideas of mothering and motherhood as an institution developed is a critical foundation in understanding why disabled mothers continue to face barriers, prejudice and discrimination in their lives. Many theories on mothering mention intersections as places of tensions: race, immigration, religion, and marital status to name a few. Feminism, long criticized for excluding anyone at the margins, seem to completely forget that their disabled sisters may in fact also be struggling with mothering duties as well (Frohmader, 2007; Mykitiuk & Chadha, 2011; Ridington, 1989). As O’Donovan (2011) writes: Some suggest the gap in feminist theorizing [on disabled mothering] is attributable to tensions between feminist goals and those of women with disabilities. Feminists have long criticized pressure on women to reenact highly sexualized representations of femininity and to identify womanhood with motherhood. In disability studies literature, many women describe frustration at not being seen as sexual, feminine, or motherly; such women aspire to the very stereotypes feminists encourage them to reject. (p. 93–94) It is of note that despite the larger feminist research generally ignoring disabled mothers, at the margins, disabled women are writing about their concerns. Desirability can play a role in becoming a mother; however, due to reproductive technologies and adoption, it is now possible to become a mother without a partner. Chapter 2: Theoretical Framework 34 That said, most of the women in this project became mothers in traditional biological ways, and reflection on desirability and reproductive experiences is connected to disabled embodiment in a society that privileges some bodies over others. Feminist researchers and theorists have written extensively against the way in which females in our society are viewed as sexual objects and as potential mothers (Rich, 1986). Whereas women living with disabilities have discussed their invisibility in society in relation to their potential as lovers, mothers, and partners (O’Donnovan, 2011). Understanding and validating these two different positions is important. I do not believe that disabled women have argued that they want to be objectified, rather women speak eloquently about their absence from the discussion at all and the implications this has on their ability to even engage in choices about reproduction and family (Mykitiuk & Chadha, 2011). Despite human rights laws, women with disabilities are seen “as genderless and sexless, society has marginalised the social and economic issues that are critical to promoting their parenting, sexual and reproductive rights, including access to sexual education and reproductive services” (Mykitiuk & Chadha, 2011, p. 197). One way to discuss the impact of this on women’s experiences is to use Garland-Thomson’s (2009) concept of “the Stare”: If the male gaze makes the normative female sexual spectacle, then the stare scopes the disabled subject into a grotesque spectacle. The stare is the gaze intensified, framing her body as an icon of deviance. [ … ] The stare is a gesture that creates disability as an oppressive social relationship. And as Chapter 2: Theoretical Framework 35 every person with a visible disability knows intimately, managing, deflecting, resisting, or renouncing that stare is part of the daily business of life. (p. 26) The invisibility or “asexual” experience of many disabled women is disrupted when they enter the world as mothers, therefore, it is important to reflect on some of the theories of mothering and those on disabled mothering to understand how becoming a mother changes society’s perception of disabled women. Understanding what it means to live in a body that is not seen as sexual, a body that does not typically engage with the male gaze, and yet lives with the desire to participate in a societal norm of becoming mother, and access the same rights as other women do in the journey to have a family is part of the work to understand the continued barriers experienced by disabled women and girls in a society that asserts disabled people have a right to the same full human experience as nondisabled citizens. Rich was one of the early feminists to examine the institution of motherhood. In her ground-breaking book, Of Woman Born (1986b), she discussed her personal experiences of motherhood and the larger connections these experiences have to patriarchy, economy, and mythology. She directly connects women’s reproductive capabilities to women’s oppression in a patriarchal society, addressing issues such as those raised by Waring (2004): women’s labour is not valued in a capitalist society, being assumed and available for free, and not economically valued. Rich also discussed the isolation she personally experienced as a mother raising three boys and her struggle with loss of autonomy. Before Rich, Firestone (1970) argued that in order for a true revolution to occur in which women have equal status with men, women need to overcome the reproductive oppression experience in our Chapter 2: Theoretical Framework 36 current society. Firestone elaborated on the work of Marx and Engels, taking the argument beyond class oppression into an analysis of materialism and explicit oppression women experience due to biological sex (1970, pp. 10–14). More recently, O’Reilly (2008),1 at York University, has generated an entire institute focused on maternal studies: The Motherhood Initiative for Research and Community Involvement (MIRCI). Within the work of MIRCI, which grew out of the Association for Research on Mothering (ARM) and that being done in disability studies, there are few projects focusing on the intersection of disability and mothering (e.g., Filax & Taylor, 2014). It is important to uncover the progression and connections in these two fields. Therefore, in this section I offer an overview of mothering feminist theories, especially as to how they connect to both women’s reproductive potential and ideas of who “should” procreate. I argue for connections between a materialist analysis of sex and reproduction as developed by feminists and more recent disabled embodiment theories (as discussed in the previous section). These theories support a better understanding of how disabled women experience the institution of motherhood and who is excluded from these narratives. Feminist writers like Rich and Firestone address the absence of women’s particular experiences of oppression in the philosophies of their time, especially related to class oppression and equality, despite many theories and philosophies on capitalism and labour, the male philosophers were not counting or commenting on 1 Every volume produced by Demeter Press focuses on some aspect of mothering, and MIRCI hosts annual conferences with specific areas explored each year. Chapter 2: Theoretical Framework 37 the free labour of women’s bodies. Although Rich does discuss mental illness and the implications of mental health on mothering, rarely do feminists explicitly discuss disability and mothering. Feminist disability scholars such as Barile (1988) and Ridington (1989) very early on address the neglect of disability in much of the writing on reproduction. Ridington argued that disabled women need access to reproductive education and more information in order to make informed choices regarding childbearing. She addressed issues ranging from reproductive technologies, adaptive technology for parenting, adoption, and alternate views on abortion. Her paper came about after a larger survey conducted by DisAbled Women’s Network (DAWN) in the mid-1980s. The data from this research clearly indicated a need for more research on disability and mothering. Over 30 years ago, the ground-breaking so-called “Eve” case (E. (Mrs.) v. Eve, 1986; Rioux & Yarmol, 1987) was decided by the Supreme Court of Canada. In this case, it was argued that parents did not have the right to have their daughter—a young woman with an intellectual disability—sterilized. However, despite this ruling against uninformed or forced sterilization, coerced sterilization continues to be the norm for many young women with disabilities (Asch, 2001; Aunos & Feldman, 2000; Daniels, 2019; Filax & Taylor, 2014; Finger, 1985; Prilleltensky, 1998). Kuttai (2009; 2010) documents her experiences with physicians who felt she should not procreate, some even assuming that her acquired disability could be passed on to her unborn children. Overall, the majority of writers who focus on disability and mothering indicate a desire for better education— for both service providers and for women and girls with disabilities, as well as a call for truly informed choice (Barile, 1993; Chapter 2: Theoretical Framework 38 Blackford et al., 2000; Ridington, 1989). For this to truly happen, both the actual lives of disabled women and their own first-hand knowledge of their bodies needs to be respected. Garland-Thomson (2011) argues: In my view, capability lodges too firmly in bodies and not enough in environments. What makes the capabilities approach untenable is that judging the worth of a life through quality-of-life arguments has been used to justify eugenic euthanasia, selective abortion, forced sterilization, institutional warehousing, and a variety of other discriminatory practices based on prejudicial attitudes and lack of imagination on the part of dominant majorities who do not understand disabled lives. (pp. 605–606) The imagination to challenge historical assumptions about disability and reproduction creates a space wherein women can explore and make informed choices based on all the options available to them on whether to create a family, or not; whether to choose traditional biological paths to this goal, or choose adoption, reproductive technologies, or other shared parenting/co-parenting, fostering, or any myriad of other ways to engage with raising children that we have not yet imagined. This space of imagining outside of former models and institutions has the potential to define how disabled girls growing up now envision their future. However, there are historical myths and assumptions that continue to deny this imagination. Internalized ideas around who has the right to reproduce or to raise a child, which have grown out of the eugenics movement are important to understand when theorizing about disability and mothering (Denhoed, 2016; Die, 1952; E. Keller, 2002; Lamp & Cleigh, 2011). Policies, programs and practices continue, as will be Chapter 2: Theoretical Framework 39 discussed later, that reinforce assumptions that some bodies should not reproduce, and some bodies should not participate in raising children. Further, in critiques of the devaluing of women’s labour, as mentioned previously, often the connection to disabled mothering is missed. This connection is an important one to make when discussing how capitalism interacts with bodies that misfit. In much of the work I conducted over the past decade, and specifically in this project, disabled women who require personal support for daily activities have asserted (and been challenged) that these activities should include mothering labour (Smith, 2008a; 2008b; Smith 2009a; 2011; 2012; 2014). Often these activities are not paid for by government programs, and when they are, women report that they experience a feeling of increased surveillance. For disabled women who are financially secure, these questions are not necessarily at the forefront. That said, for mothers who rely on the state to provide these supports, the resistance they face to paid caregiver services related to mothering are important moments of resistance and can open up discussions on what we value and do not value from women’s bodies, and how this plays out under both the charity and medical models versus the human rights model of disability. Disability activists and scholars rarely address the challenges of mothering and the limitations of knowledge and support for disabled mothers. Human rights work and inclusion promotion focuses on education, employment, and recreation almost exclusively. Most of this work sprung up after the ratification of the CRPD, and especially since the General Comment 3 in the 2016 UN Committee on the Rights of Persons with Disabilities (UN CRPD) explicitly highlighted this area of Chapter 2: Theoretical Framework 40 continued discrimination. Where are the voices of disabled parents? Even now, as I complete my PhD studies, when I discuss my research topic the assumption is that I am writing and researching about parenting disabled children, not disabled women who are parenting. Disabled mothers are barely a blip on the radar and when they are, it is as criticism or fear, questioning motives, abilities, access to resources, income, and the right to public supports for this role. The comments underscore prevailing myths of the monstrous other mother, or the inference of the destruction of childhood when being asked, “Do you want your child to end up being your caregiver?” (Prilleltensky, 2004). Although a number of writers focus on disability and mothering, few truly theorize regarding the experiences, rather, most are short research projects with recommendations that further, deeper work need be conducted. An additional strain on women who live with disabilities is the current expectation from society on what the role of a mother is. Douglas & Michaels (2004) write about the idealization of what she terms the new momism and the “highly romanticized and yet demanding view of motherhood in which standards of motherhood are impossible to meet” (p. 4). These are at the heart of what researchers in motherhood theories are challenging. She argues that the “fulcrum of the new momism is the rise of a really pernicious ideal in the late twentieth century that the sociologist Sharon Hays (1998) has perfectly labeled new, high expectations on mothers ‘intensive mothering’” (p. 5). For disabled mothers, these ideals of mothering—a neoliberal expectation of absolute independence and responsibility—further alienate from the actual experience of mothering. Many feminist theorists who Chapter 2: Theoretical Framework 41 focus on mothering connect the issue of this new hyper-involved mothering to the fact that it is usually expected alongside of other capitalist expectations, such as paid employment (Ennis, 2014; Hays, 1998). In the 1700s and 1800s, it was believed that certain women’s bodies should not be allowed to procreate, and the institutionalization and forced sterilization of these women controlled their ability to procreate (Ridington,1989). According to the eugenics movement, they must not re-create their disability. Having a disabled child reflected poorly on the family into which the child was born, resulting in many families being pressured to put their children into institutions (Stern, 2005; Stock & Campbell, 2000). Later, following years of activism by the disability community and by mothers of people living in institutions, many of these institutions were closed (Panitch, 2008). The civil rights, and specifically the disability rights movement worked towards inclusion for disabled individuals and their families in the community, the schools, and then the right to have a family. Yet, despite legally having the right to have and raise children, individuals with disabilities, more specifically women, continue to be regulated and scrutinized. Earlier I discussed the importance of the many models of disability and how these impact society’s understanding of disabled lives. I believe that many of the challenges faced by disabled mothers (or by disabled women who wish to become mothers) can be connected directly to a misalignment between models. Many disabled children are raised today within their communities. They are implicitly (if not explicitly) told that they have equal rights to their peers, yet, too often, they experience discrimination and resistance to living a full life. Exclusion can include Chapter 2: Theoretical Framework 42 both explicit and implicit messages about dating, reproductive information, and access to sexual education. This is a misalignment between the human rights and social models with the medical, charity and moral models. As Clare (2001) writes: Consider mothers with hereditary disabilities, who face significant disapproval for their decisions to have children and immense pressure to undergo various medical tests and to consider abortion if their fetuses appear to be disabled. They are caught in a vise-grip between the moral model and the medical model. (p. 360) Despite having a legal right to have a family, the actual experience of disabled girls and women is tied up within a history of eugenics, and moral assumptions about disability. And, despite over 30 years of social activism, too often, disabled lives are still not seen as having intrinsic value on their own. Within this dissertation, I privilege the human rights model of disability as a tool that can be used by activists and scholars to challenge the misalignment between the legal rights of Canadians with disabilities, and the lived or embodied experiences as share by participants in Chapter 5. As suggested by Shakespeare (2013), the social model offers a “structural analysis of disabled people’s social exclusion” (p. 214). Combining an awareness of both these models complement a feminist disabled materialist analysis of maternal experiences. As I discuss later, models of disability are tools by which we can understand the embodied experience of disabled mothering, however, an explicit human rights approach to these experiences empowers a legal perspective in understanding disability and discrimination. In particular, this approach is a tool by which activists and scholars Chapter 2: Theoretical Framework 43 can challenge where current laws, policies and programs replicate discrimination and where they create barriers to citizenship. In Extraordinary Bodies, Garland-Thompson (1997) coined the term “the normate,” which she defined as ideal body that rarely exists but to which all bodies are compared. It is important to connect this term or concept to both medical norms and female reproduction. Both the idealized body and the idealized mother impact who society allows to reproduce and how certain mothers are discouraged or even punished for having families. Foucault (1995) discusses normalization of the body in Discipline and Punish. He especially makes connections between statistical normalization and how these norms are enforced through social control. This social control, according to Foucault, is reinforced through surveillance. In his works, Foucault sets the historical stage for this institutional surveillance. I argue that disabled mothers experience institutional surveillance at more profound levels than nondisabled mother’s due to their increased connection to services and resources from the state. For disabled mothers, challenging the assumptions about disabled bodies and the normate is necessary in order to successfully locate themselves in a society that either invisibalizes or overly surveils their bodies. Garland-Thomson (2002) critiques this system and provides feminist disabilities studies as a way to challenge the normate: Feminist disability theory’s radical critique hinges on a broad understanding of disability as a pervasive cultural system that stigmatizes certain kinds of bodily variations. At the same time, this system has the potential to incite a critical politics. The informing premise of feminist disability theory is that Chapter 2: Theoretical Framework 44 disability, like femaleness, is not a natural state of corporeal inferiority, inadequacy, excess, or a stroke of misfortune. Rather, disability is a culturally fabricated narrative of the body, similar to what we understand as the fictions of race and gender. The disability/ability system produces subjects by differentiating and marking bodies. (p. 5) The spaces where we challenge these systems and where women challenge the concept of the normate—similar to how feminists have challenged what is femaleness—disrupt current ableism and discrimination of what it means to live a disabled life, in particular, what this means to women and girls seeking to create a family. Disabled mothers engage in the politics of challenging both capitalist systems and the free labour of mothers that sustains these systems. They engage “the Stare” outside of the male gaze and demand to be seen and to be included in full citizenship, and they challenge assumptions about what it means to be a mother. Understanding the many layers of theory, models of disability and history, and the systems that perpetuate discrimination is key to sharing the stories of women who disrupt these systems and institutions to attain their dreams of becoming mothers. Chapter 3: Research Context 45 Chapter 3: Research Context: Disability and Mothering in Academic Literature This chapter provides a synthesis of major literature regarding mothering and disabled women. Herein I contextualize the larger body of research into seven general areas of research about women with disabilities, and both their reproductive and sexual health, and maternal experiences: community-driven research; autoethnographies; custody and legal research; health-focused qualitative studies; qualitative research outside of the bio-medical field; risk and outcomes in health research: health studies; data mining and secondary analysis of studies. In this chapter, I focus only on literature that examines the reproductive and parenting experiences of disabled women. Initially, I conducted searches of research databases, however, despite support from several librarians, the searches produced limited results. Many of the results were studies about parenting or mothering disabled children. Given challenges of online academic searches, I relied on key reports and studies to identify other relevant research on this topic, relying on a snowball technique. I excluded studies in other languages. Community-Driven Research In examining literature and research projects focused on the sexual and reproductive rights of disabled women, I intentionally included community-driven research as this research is usually community driven and often takes a rights-based approach. The category of community-initiated research is of significance in that it is often directed and conducted by women with disabilities (e.g., members and staff of women’s disability organizations) and academics. Further, there was significant work Chapter 3: Research Context 46 conducted on the topic of disability and mothering before the academic community was investigating the topic. Below I provide an overview of several important community projects on this topic. There are several organizations doing significant work and research focused on disabled women. Although often not a focus of their research, several organizations have contributed to an understanding of the barriers experienced by disabled women in planning for and raising a family. Of note are three national organizations: DisAbled Women’s Network of Canada (DAWN Canada), Women with Disabilities Australia (WWDA), and Through the Looking Glass (TLG) National Center for Parents with Disabilities (USA). TLG is a service agency committed to services and research that is peer-driven and peer-lead. These three organizations often work with disabled scholars to complete their research. They publish findings in several key ways: reports to governments, community print and online spaces, workshops, academic journals and books, and in reports to the UN during state reviews. One of the earliest ground-breaking studies conducted by and about disabled women was conducted in Canada by DisAbled Women’s Network. In partnership with DAWN, Ridington (1989) conducted a comprehensive study of disabled women’s experiences in Canada. The study, and its subsequent report, was designed, managed, and written by women with disabilities. An extensive questionnaire was sent out to 1200 individuals. A total of 245 women participated in the study. One report based on the findings found that mothers in the study experienced barriers to “[accessible] housing 25%, transportation for yourself 36%, Chapter 3: Research Context 47 transportation for children 25%, child care 33%, household tasks 32%, [and] lack of social/medical workers who understood your situation 33%” (Ridington, 1989). Further, at the time of the research, women reported having their children removed from their care, and others reported barriers to adoption. This research was ground-breaking in that it elevated women’s voices and their experiences in matters such as reproductive rights, single parenting, adoption, pregnancy, accessible mothering, violence, children as helpers, isolation, and the compounded challenges for disabled mothers related to housing, transportation and poverty. Ridington also reported that due to the lack of information and resources available to participants in the study, each felt that they had to “resolve her problems on her own” (1989, p. 5). Finally, Ridington also identified that over half of the disabled mothers were single mothers, many living in poverty, a reality that exacerbated the challenges of being disabled and parenting. Of the single mothers in the study, over half reported experiencing violence. Finally, mothers in this study reported concerns that their children would become their helpers and feared this would have a negative impact on the children. TLG, a community-based nonprofit organization that grew out of the independent living movement, has conducted research projects focused on parents with disabilities. TLG initiated the National Center for Parents with Disabilities and created a “synergy between clinical and intervention services and research” (Kirshbaum & Olkin, 2002, p. 69). Kirshbaum and Olkin (2002) identified a key problem with much academic research on or about parents living with disabilities: Much of the research on parents with disabilities has been driven by a search for problems in these families. The pathologizing assumptions framing such Chapter 3: Research Context 48 research presuppose negative effects of the parents’ disabilities on their children. The perennial pairing of parents with disabilities and problems in children perpetuates the belief in deleterious effects of parental disability on children. (p. 66) Instead, TLG developed and committed to an alternate, community culture driven approach to research. They used innovative methods of research including using video to study how ten parents with disabilities cared for their children (Kirshbaum, 1988). The authors showed that, “Videotape analysis mapped the gradual mutual adaptation process as it developed between parent and infant during interaction” (Kirshbaum & Olkin, 2002, p. 70). Kirshbaum and Olkin found that practical solutions and early interventions are needed to support parents with disabilities. Through this research, the project developed a series of videotapes that demonstrated a baseline for what disabled parenting looks like and how parents can better be supported. TLG also found that disabled parents experienced a “startling … degree of pathologizing and lack of disability expertise in child protection evaluation practice” (Kirshbaum & Olkin p. 71). TLG developed alternative evaluation resources in response to their findings. Similarly, a Kirshbaum’s (2000) survey of more than 1200 disabled parents found: Two out of five respondents reported facing attitudinal barriers as disabled parents, with one-third reporting discrimination as a parent with a disability. Practical obstacles to parenting included transportation (reported by four out of five), housing (40%), recreation access (66%), lack of access to baby care adaptations, and barriers to childcare. Attempts to take their children away Chapter 3: Research Context 49 were reported by 15%. Other significant issues included parents being told they could not use personal assistants to help with childcare and experiencing interference from assistants with their role as parents. More disturbing was the child abuse by personal assistants reported by 18 parents. (p. 10) Kirshbaum underscored that “despite these social obstacles, parents with physical disabilities have been applying their expertise in problem-solving to the realm of parenting for generations” (2000, p. 11). The outcomes of these studies (Kirshbaum, 2000; Kirshbaum & Olkin, 2002) focused the work of TLG to build solutions based on the knowledge and expertise of disabled parents, including developing adaptations for parents, and creating a disability culture wherein parents with disabilities support one another and help to buffer or reframe stigma through role models. WWDA has conducted research focused on forced and coerced sterilization (Frohmader, 2013). This report found that despite legal erasure of forced sterilization, attitudes that support and reinforce eugenics policies continue to exist in both legal and medical establishments. Despite eugenics practices being illegal, the report found that disabled women and girls continue to experience forced sterilization. The argument for these “eugenics based practices [are] population control, menstrual management and personal care, and pregnancy prevention” (Frohmader, 2013, p. 36). They also found four broad arguments for these continued practices: In Australia, the reasons used to justify forced sterilisations generally fall into four broad categories, all couched as being in the “best interests” of women and girls with disabilities: a) the genetic/eugenic argument; b) for the good of Chapter 3: Research Context 50 the state, community or family; c) incapacity for parenthood; and d) prevention of sexual abuse. (Frohmader, 2013, p. 36) The results of this research were submitted to the Australian Senate and recommendations were shared with the UN CRPD. The work of WWDA takes an explicit human rights approach, connecting their findings to historical injustice and legal redress, highlighting Australia’s failure to meet expectations as a signatory of the CRPD and the UN Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW; UN General Assembly, 1979). This report lays out the ways in which Australia rationalizes forced and coerced sterilization, including genetic/eugenic arguments, assumed incapacity, and an argument that sterilization is in the best interests of disabled women. The report then links how these arguments are not only weak, but in direct violation of human rights treaties. The report makes 18 recommendations to the Australian Senate to address these violations. In another WWDA report, Frohmader (2009) focused on addressing issues for disabled mothers in Australia. This research took an explicit human rights-based approach to the issues, provided background information on the situation in Australia, and provided tangible policy recommendations to address systemic discrimination. The report also identified some of the issues I encountered in my examination of literature: “Much of the internationally published literature on parenting and disability remains embedded in a medical model of disability, which is individualistic, attributing disability to the body’s inability to function in a ‘normal’ way” (Frohmader, 2009, p. 9). Frohmader identified a number of similar barriers Chapter 3: Research Context 51 experienced by disabled people seeking to become parents as I heard from participants, including access to appropriate and accessible information, services and support. They also identified “a dearth of suitable information on preconception, pregnancy, birth, postpartum, and the varying stages of child rearing” (Frohmader, 2009, p. 9). They also reported that services “have significant shortcomings in dealing with the dual factors of pregnancy and disability” (Frohmader, 2009, p. 12; see also Frohmader, 2007; Prilleltensky, 2003; Gavin et al., 2006; Rotheram, 2007). WWDA embed their reports and research both in the first-person experiences of disabled women and in human rights. Privileging these two positions creates action-oriented reports that can be used both domestically and internationally to pressure their government for actionable change. The organizations highlighted in this section have privileged the voices of disabled women in their research and reporting. They then use their expertise as researchers to organize their findings in a way that clearly identifies gaps and barriers experienced by disabled women in accessing their reproductive, sexual health, and parenting rights. Although all three countries identified in this section have created powerful reports that are referenced by academics and disabled groups, many of their findings and recommendations are relevant decades later. Consistent findings across all states includes barriers to accessible services, housing, transportation, and childcare. Similarly, all three states reported ableist attitudes within legal, medical, and family services. Further, all three groups reported the multiple barriers that disabled women experience in making informed rights-based choices about their reproductive health, including choices about when and Chapter 3: Research Context 52 how they might have a family. Barriers were reported that include choice about pregnancy and spacing of children, access and choice of birth control, information and access to reproductive technologies, and access to adoption as an option. Autoethnographies Disabled mothers interested in researching mothering and reproductive experiences have used autoethnographies to investigate their personal experiences of mothering and connect these to larger social issues. Autoethnographies are powerful deep dives into the experiences of one person. As Kuttai (2009) writes: “there is authenticity around autoethnography because it is committed to developing theoretical understandings of broader social phenomenon while also documenting the moment-to-moment details of an individual’s life” (p. 35) A tricky component of this category relates to ethical issues that arise when exploring an individual’s life story and reporting on it in-depth. For example, A. Keller (2020) explored her relationship and narrative in relation to her mother. Keller’s mother was diagnosed with multiple sclerosis before she was born. Keller discusses her problematic relationship with her mother over time, countering degenerative narratives—which Keller connects to victim stories—with what she calls a regenerative narrative wherein she unravels a story of both tragedy and comedy and the relationship between mother and daughter. Why this is problematic is that it is not clear as a reader whether her mother is a collaborator in this narrative. From a disabled feminist paradigm, narratives about disabled lives from outsider perspectives are problematic. At one point, Keller includes the line: “I/we use storytelling to create our own way out; to regenerate” (2020). This is the only place in Chapter 3: Research Context 53 the article wherein a reference is made that might be interpreted to mean there was collaboration on the narrative. Titchkosky (2007) asserted the people with disabilities need to be active and engaged in their own research. This is a beautiful essay. Her story, as a daughter growing up with a disabled mother, is told with a respectful delicate touch, using narratives from memories of her personal experiences at home and in school, however, it would be stronger narrative research if she explicitly situated her mother’s engagement within this research. In another similar study, Hayward (2014) discussed her personal narrative of becoming a mother while living with juvenile rheumatoid arthritis. She explains her journey to becoming a mother as a process wherein she negotiated with her “husband, health professionals, and [her] own body” (2014, p. 71). She “presents [her] experiences and reflections through a critical lens utilizing aspects of the medical, social, and ecological models of disability” (2014, p. 72). Hayward creates a self-aware understanding of the interdependence of these systems on her “construction of the mother role” (2014, p. 84). Similar to other studies, Hayward discusses the ways in which she must balance her medical and disability needs with her pregnancy and unborn child. Of note is Hayward’s reflections on the 2011 film Mothersbane, a film about a son’s relationship to his mother’s disability. As noted in other chapters in this project, representation in media and popular culture can have profound impacts on people with disabilities, especially for disabled mothers who so rarely see people that look like them represented in the public. Hayward’s narrative demonstrates the interplay of navigating disability and motherhood. This research highlights that the lived experience of disability and motherhood do not exist in a Chapter 3: Research Context 54 vacuum, rather, this journey is very much connected to multiple factors outside of the singular body and is navigated and renegotiated within many systems. A recent example of autoethnography, is the master’s thesis and book written by Heather Kuttai (2009, 2010), a mother of two and wheelchair user. Kuttai documents her personal story starting with the car accident that caused her spinal cord injury, through her experiences of gaining confidence to pursue her wish to have a family. Kuttai attributes her time as a Paralympian with giving her the confidence to have a family. Kuttai weaves her personal reproductive experiences in a larger context of accessibility, bias, and assumptions made in society about disabled bodies. She applies postmodern and feminist disability theory to her research (Garland-Thomson, 2002) grounded in the social model of disability. She recognizes the importance of Foucault’s analysis of docile bodies (1995), but more explicitly locates her research in line with the work of feminist disability theorists, particularly disablement theory (Verbrugge & Jette, 1994) to understand the barriers she encountered during her pregnancies. Kuttai shares her experience of inaccessibility both physical and attitudinal within maternity spaces. Kuttai found that maternity wards had made no progress to be more accessible between the births of her two children, 8 years apart. Kuttai discussed the difficulties she encountered when maternity physicians and staff insisted on separating her disability medical needs from her prenatal needs, despite the embodied experience existing at the intersection of these two categories. After experiencing complications in her second pregnancy that resulted in further loss of sensation and control in her body, Kuttai Chapter 3: Research Context 55 (2009) requested an induction, “however, the obstetrician completely disagreed, telling me that induction was not the best route for the baby and if this was a spinal cord related issue, I had to take it up with my rehabilitation doctor” (p. 113). This separation of care meant that her rehabilitation physician was forced to write a letter to have her obstetrician prepare for a planned induction of her second child. She further shared how her own knowledge of her body was often ignored despite the maternal care physicians not having knowledge of disability. There were many examples wherein her maternal care team refused to investigate concerns that they deemed to be related to her spinal cord injury. That said, she equally reflected on the positive impact of supportive or positive medical and personal relationships on her journey to becoming a mother. For Kuttai, ableism and discriminatory attitudes are often equally as difficult to navigate as physically inaccessible spaces, however, one of the continued most profound impacts on her as a mother is the inaccessible community where she interacts as a parent, especially the many spaces where her child engages in activities, including playgrounds, dance studios, schools, and swimming pools. This powerful autoethnography provides insights into the very personal process that the author navigated on her journey to becoming a parent and connects her personal story to theoretical research. Finally, a recently published dissertation project by Daniels (2020), explores how disabled mothers challenge and resist ableist ideologies of motherhood, using her insider position as a disabled mother. Daniels (2020) created autoethnographical field notes during her pregnancy, and shortly afterward. She also reviewed literature Chapter 3: Research Context 56 related to motherhood and disability using a postconventionalist approach. In a publication based on her research, Daniels (2019) argues that ableist assumptions guide societal ideas about who is a good mother, “the ‘approved’ mother holds a number of valued characteristics: physical dexterity; fast pace; endless energy; emotional, mental and physical stability; and is self-contained, independent and autonomous” (p. 116). For Daniels, this idealized mother sets disabled mothers as “an antithesis to the ideal mother and citizen” (2019, p. 116). She also discusses her own struggle at times to reflect this idealized mother in her own mothering. Daniels (2019) also identifies that too often in the bio-medical settings, disabled mothers are categorized as risky, and she argues, that maternity care is too often “cruel and exhausting” (p. 119). Similar to others (Crow, 2003; Prilleltensky, 1998; 2004; Skinner, 2011; Thomas, 1997), Daniels (2019) argues that her experience of hostility from medical professionals is not unusual. She writes, “disabled women are routinely objectified, marginalized, and treated with a toxic mixture of scorn, disbelief and distaste” (2019, p. 119). She argues: “If society was open to a diverse range of people who mother I may have felt more secure of my impending motherhood” (2019, p. 119). The strength of Daniels’s (2020) dissertation project is that she wove her own story through and around the many other studies, many of them referenced in this chapter. Daniels, a new mother, highlights that accessibility in maternal services has changed little in the past 30 years, and she argues that ableism in maternal services continues and the forced performance of abledness in these spaces is both harmful and impractical. Chapter 3: Research Context 57 Although these close examinations do not appear to provide traditional academic “findings”, they provide powerful insights in how disabled women navigate the systems they encounter on their journey to becoming mothers. In the context of research that seeks to understand sexual and reproductive experiences of disabled women, these close examinations of individual lives are critical to develop an understanding of disabled lives. Because disability is not homogenous and in fact includes many diverse and different experiences, it is critical to conduct these deeper dives into the specific experiences of individual narratives. Custody and Legal Research There is limited research available on custody outcomes and experiences of disabled parents. Major disabled women’s organizations (e.g., DAWN Canada, TLG, WWDA) have all identified this as a neglected and urgent area of research. Unfortunately, many family court proceedings are privileged and not easily available to researchers. Mothers experience state intervention, oversurveillance, loss of custody, or other interferences with their role as mother in relation to nondisabled mothers. This is an area where I experienced challenges in locating consistent data; as several studies (e.g., Abualghaib et al., 2019) indicate, too often, statistics about disabled citizens are not kept and certainly disaggregated statistics are not available. Below I review some of the key findings of studies to date, these studies identify many of the areas where further research is required to understand the breadth of experiences by people with disabilities related to custody. A number of studies in the area of custody have focused on parents with intellectual or developmental disabilities. Research on parents living with intellectual Chapter 3: Research Context 58 disabilities (ID) stretches back as far as 1947, with Mickelson’s study: “The feebleminded parent: A study of 90 family cases.” Often this research is related to social work with a focus on child custody, apprehension, and societal perceptions of parents with ID, and the impact this has on parents. McConnell & Llewellyn (1998) write: “A considerable number of these parents have spoken of living under constant scrutiny and their fear that ‘the welfare’ might take their children away” (p. 1). These studies identified the toll oversurveillance takes on parents with ID and countered that many of the prejudices and assumptions about disabled parents are unfounded (see also Booth & Booth, 1993a, 1993b; McConnell, 1998). However, further systematic research is needed in combination with application of a rights-based approach, and policy recommendations to address the continued discrimination reported and unchanged over decades. Often disabled parents do not know their rights, and do not have access to legal representation or advocates when facing state interventions. In an Australian study, Keyzer et al. (1997) found that many parents with ID did not have access to adequate legal representation. Keyzer et al. and similar studies consistently report that parents with ID are overreported to child welfare agencies. Relatedly, research focusing across disabilities have found overrepresentation of child welfare related issues for parents with disabilities. Llewellyn et al. (2003) found that nearly one-third of 285 Australian child protection cases reviewed involved parents with disabilities; “parents with psychiatric disability were the most prevalent group featuring in 21.8% of the cases” (p. 239; see also Bishop et al., 2000; Taylor et al., 1991). These studies identify a lack of legal representation for disabled parents in these Chapter 3: Research Context 59 circumstances. One way to address gaps in representation, both in legal and in advocacy capacities, is through education for both disabled parents and service providers (see TLG videos). Both sides should know their rights and have access to relevant information. All of the researchers who focused on ID and custody concerns indicated that more research is needed in this area. Despite high rates of removal of children from parents living with psychiatric or intellectual disabilities, evidence from research consistently demonstrates that parents with disabilities are no more likely than the general population to abuse or maltreat their children (e.g., Frohmader et al., 2014). They are consistently overrepresented in the courts and child removal cases and are ultimately more likely than other parents to permanently lose custody of their children (Frohmader, et al., 2014). Frohmader et al. (2014) discuss the case study of Julie. They argue that “moral discourses of disabled mothers as ‘unruly’ and the practices of denial of motherhood [for mothers with disabilities are] consistent with authoritarian neoliberal policies of welfare and mothers continue to impact disabled mothers” (2014, p. 297). They explicitly connect this case study and wider practices in Australia to a failure of the state to conform to the legal obligation as signatories under the CRPD: they argue “that the state acts in a contradictory role as providing support services, while at the same time enforcing control of disabled women as inappropriate and incompetent mothers” (Frohmader et al., 2014, p. 300; see also Malacrida, 2012). The National Council on Disability (2012) conducted one of the most comprehensive legal research studies to date in the United States. This study pulled together a synopsis of “the current state of knowledge, attitudes, and practices Chapter 3: Research Context 60 toward parents with disabilities and their children” (National Council on Disability, 2012, p. 15). The researchers engaged stakeholders, conducted key informant interviews, enacted informal conversations with parents and children, reviewed key government agencies, and performed a legal analysis of US disability laws. Finally, the researchers conducted an extensive review of literature, case law, and research. The researchers found three key findings: 1. There are few accurate and comprehensive sources of information on prevalence of parents with disabilities. (National Council on Disability, 2012, p. 16) [ … ] 2. The child welfare system is ill-equipped to support parents with disabilities and their families, resulting in disproportionately high rates of involvement with child welfare services and devastatingly high rates of parents with disabilities losing their parental rights. (National Council on Disability, 2012, p. 18) [ … ] 3. Parents with disabilities who are engaged in custody or visitation disputes in the family law system regularly encounter discriminatory practices. (National Council on Disability, 2012, p. 21) Although this report was embedded in the legal rights of parents with disabilities, it did not explicitly locate the research and findings in a human rights framework. Further, despite the conversations with parents and their families, there was not a consistent method of interviewing and documenting the experiences of disabled parents from their own perspective. Chapter 3: Research Context 61 One of the few reports that was broader in scope was that of Callow (2014) and Callow and Jacob (2014), with The National Center for Parents with Disabilities at TLG. These researchers investigated the litigation experiences of 64 disabled mothers in the United States using mixed methods. Callow and Jacob (2014) found Parents with disabilities were vastly over-represented in child welfare cases. [ … and] significantly over represented even when compared to the percentage of parents living below the federal poverty line with disabilities in the respective county housing each court. (p. 85) From this research, they recommended that “significant resources will need to be devoted to developing, providing and evaluating the quality and efficacy of accommodations and adapted services that would satisfy the law” (2014, p. 86). Further, drawing from three court samples, the researchers reported that psychiatric disabilities were the most prevalent in child welfare cases. Further, this study found that “U.S. court sample rates were also higher than those found in the Australian court sample by Llewellyn, McConnell, and Ferronato (2003)” (2014, p. 86). Callow (2014) reported: Having worked on hundreds of cases involving disabled parents it is apparent to me that despite thirty years of disability activism [by her organization], society, represented by the legislature and judiciary in dependency cases, remains highly threatened by disabled motherhood. (p. 278) Her blunt assessment of the experiences of disabled mothers, as demonstrated by decades of research, was: “Unable to prevent it, society seeks to undo it” (2014, p. 278). Callow further argues, “disabled mothers threaten the hegemony of Chapter 3: Research Context 62 normalcy” (2014, p. 280). Despite the enormous barriers the mothers in this study experienced in the courts, Callow argues that her study was “rife with examples of disabled mothers resisting” (2014, p. 287). Further research demonstrates the oversurveillance of disabled mothers. In 2014, Laura Track with West Coast Legal Education and Action (LEAF), Vancouver, British Columbia conducted a qualitative study focused on the legal experiences of 25 disabled women. The organization consulted with representatives from 14 organizations and was guided by an advisory group (I was a member of this group). Informed by an intersectional analysis, the findings of this research reinforce the findings of previous studies: oversurveillance of mothers, a lack of supports prior to child investigations, and an overall fear by mothers of reaching out and asking for help. Further, the study found that access to mitigation and parental classes are often not accessible for women with disabilities. The study outlined obligations within legal documents and policies that are not being followed by BC’s Ministry of Children and Family Development (MCFD), nor by the Ministry of Justice. This study also supported findings in a previous report by West Coast LEAF (Rahman & Track, 2012) regarding bias within parenting assessments in British Columbia and the negative implications these assessments have for women in the courts. This project explicitly connected to a human rights framework, and in using the knowledge of advisors with lived experience and expertise, this report creates a very strong series of recommendations still followed 8 years later. There is very little research that has investigated state and legal interventions in the lives of disabled parents. As indicated above, all studies have indicated a Chapter 3: Research Context 63 need for further targeted research. These studies have also indicated a need for the collection of disaggregated data in relation to child apprehension and disabled parents. Monitoring custody cases is one aspect of change. Observing disabled parents and dispelling harmful myths is another area where further research is needed. Further research might also examine how social workers, lawyers, judges and other state workers are educated to understand where gaps exist in addressing prejudice. And finally, there is a need to look at current policy and services to identify where change needs to occur. Health-Focused Qualitative Studies Health-focused qualitative studies generally focused on how women experience the clinical settings they encounter related to their reproductive and sexual health, and how clinical settings can improve their services. Tarasoff (2018) conducted a qualitative study looking at perinatal care for 13 women with physical disabilities in Ontario, Canada. Her research focused on the embodied experience of disabled women, specifically on their pregnancies, breastfeeding, and mothering. The women’s stories were connected to dominant discourses on motherhood. She found that “participants’ embodied experiences of the perinatal period and early motherhood both aligned with and subverted dominant discourses” (Tarasoff, 2018, iii). Although Tarasoff mentions rights and the implication of legislation and policy on the experiences of this population, she does not explicitly connect these later in her discussion. Her focus is on dominant discourses and how women with disabilities navigate these. In many ways, Tarasoff’s work is useful in my own research in that I too examine embodied experiences (see also Tarasoff, 2017). Chapter 3: Research Context 64 Mitra et al. (2017) focused on the pregnancy experiences of 126 women with physical disabilities from 37 States. Forty percent of these women reported that their practitioners “knew little or nothing about the impact of their physical disability on their pregnancy” (Mitra et al., 2017, para. 3). Further, many of these women reported unmet needs and inadequate information about their pregnancy. This study suggests further training and education for clinicians regarding women with disabilities and their care needs. As with other studies, this health research reinforces what previous research has found. To some extent, it is disheartening to repeatedly read the same findings over the last decade. Dean et al. (2017), in an Indian study, focused on the Gurat state, took an intersectional and rights-based approach to analyzing experiences of 22 disabled women: they aimed to explore the unmet sexual and reproductive needs of disabled women. Within the study, they highlighted the need for researchers to avoid a homogenous approach to understanding disabled women’s experience and highlighted the importance of consideration of other social inequities including wealth, class, and caste. The study discussed issues around autonomy in decision making, and also discussed familial and intimate partner violence as a factor in women’s sexual and reproductive experiences. This study is one of the few studies that explicitly connects the conversation to a larger context of rights and the importance of linking women’s rights movements in India with disability rights. They found that how women perceive decision making varies: for example, one participant (Leela) understood encouragement to have a hysterectomy as an opportunity rather than a denial of reproductive rights. As researchers, it is imperative that we also Chapter 3: Research Context 65 leave our own bias to the side as we hear how women navigate the systems they live within. Bertschy et al. (2015) explored the needs and experiences of 18 women with spinal cord injury during pregnancy and childbirth in the previous 15 years: [Participants] reported a broad spectrum of medical needs, including the need for access to improved integrated care. They also reported difficulties finding providers with knowledge of both paraplegiology (i.e. spinal cord medicine) and gynæcology. Mothers preferred using local health care services … and reported receiving no additional benefit from the services of specialized SCI [spinal cord injury] centres during pregnancy. A pre-existing provider-patient relationship was helpful for optimizing care processes. (p. 1) This research underscores the importance of a relationship with the women’s care team; a lack of integrated care and communication between their specialized regular care team and the obstetrics team; and few benefits to using specialized centres. Ahumuza et al. (2014) investigated access to sexual and reproductive health care for people with physical disabilities in Uganda. This study, like a few others, had a human rights understanding of health care, and as the other studies who frame their findings in this context, they identified that women: face a multitude of challenges in accessing SRH services including negative attitudes of service providers, long queues at health facilities, distant health facilities, high costs of services involved, unfriendly physical structures and the perception from able-bodied people that PWPDs should be asexual. (Ahumuza et al., 2014, p.1) Chapter 3: Research Context 66 Ahumuza et al. call for better education and awareness on the part of health providers on the rights and needs of women with disabilities. The researchers worked with two Ugandan agencies to recruit 20 couples: National Union of Disabled Persons in Uganda and Uganda National Action of Physical Disability. As I mention elsewhere, these relationships with disability organizations have the potential to shift the way research is conducted with an aim to document how women are experiencing these health systems and their reproductive rights. The researchers captured important demographic information (e.g., age, sex, religion, marital status, age at marriage, education level, type of employment, main source of income, means of transport and number of children)” (Ahumuza et al., 2014, p. 2). Reflecting on this demographic information enriches the understanding of how intersectional factors can influence experience and outcomes for couples looking to have a family. As other studies reported, these couples faced challenges in accessing antenatal and child birth services, many facing particular challenges in transportation and access to health centres that were distant and inaccessible. They also reported that many women are subjected to cæsarean births to accommodate the physician and health team. Walsh-Gallagher et al. (2012) explored 17 disabled women’s relationship and feelings about pregnancy in the context of pregnancy, childbirth, and motherhood in the context of risk as identified by family members and medical professionals. Women reported that they: welcomed pregnancy as affirming their identity and worth as women and as mothers. They encountered mixed reactions from partners and families, while Chapter 3: Research Context 67 professionals tended to view them as liabilities, regarding most as “high risk.” These reactions intensified mothers’ fears. They felt their ability to make choices and maintain control over their childbirth experiences was removed as the usual services were geared to provide for “normal,” able-bodied women and were not adapted to their individual needs. Moreover, a proportion were offered termination and, although all refused, they subsequently went on to indicate feeling pressurized to place their newborn babies into social services care. (Walsh-Gallagher et al., 2012, p. 156) The research reveals the historical (and modern) assumptions around fear of passing their disability on to the fœtus. This study also explored the pressure women feel to either abort their pregnancy or give up their custodial rights to raise their child. Although this study does not connect the findings to a rights-based model, these reports by women are clearly in violation of international treaties and human rights of women to have a raise a family if they desire. Although the analysis very much aligns with women’s feelings—fears, ambiguity and affirmation, a reading of it from a human rights positioning demonstrates underlying and harmful bias and ableism within health services. Further, the study builds on studies that highlight this ambiguity felt by disabled women: affirmation from their bodies in conforming to societal ideals of womanhood/motherhood, while also struggling with fear as to whether their body can successfully have a child and managing risk that medical practitioners often fixate on. Qualitative health research opens a window into understanding how disabled women navigate their maternal rights within the context of a medical system. These Chapter 3: Research Context 68 studies often included community organizations in their recruitment process. These partnerships created stronger research, and lead to reports of practical solutions for community to address gaps and barriers in services. Many of these studies also took a rights-based approach, which had the potential to understand access to maternal services outside of medical considerations, including considerations such as support systems, access to transportation and access to information. Qualitative Research Outside of Health Research Below I discuss four studies that cross time and countries, but all frame their qualitative research outside of the medical field. Although these researchers did not explicitly connect to a human rights framework, they all used a social model of disability in understanding how disabled women experience mothering. Research, such as that conducted by Thomas in 1997, built on the work done by Ridington for DAWN Canada in 1989. Grue and Lærum (2002) identified the ways in which women interacted and navigated their environments, especially in the context of discrimination and assumptions that disabled women could not be caregivers. Malone (2014) explored concepts of idealized motherhood and disability and oversurveillance, and the way these two themes impacted the women she interviewed. And Holmes (2020) investigated similar concepts as Malone but from the perspective of mothers who live with chronic or episodic disabilities. Thomas entered the conversation of disabled women and reproductive rights in 1997. Thomas found three major themes that continue to resonate through research to this day. These themes were: “the women’s engagement with the medical ‘risk discourse’; the pressure felt by disabled women to demonstrate that Chapter 3: Research Context 69 they are, or could be, ‘good enough mothers’; and their experiences of receiving unhelpful ‘help’ from health and social care workers” (Thomas, 1997, p. 622). Women were seeking information and choices in ways to accommodate their parenting. The women spoke about oversurveillance and unnecessary interventions into their caregiving. Many simple supports, such as help with bathing the children when small, or assistance with household tasks during pregnancy were not met. Women at that time felt a need to perform and deal with the challenges alone and appear to be a good mother. Thomas noted: What unites the accounts of inappropriate or inadequate assistance is that nobody appears first to have asked the women themselves what assistance, if any, they really wanted and how assistance could best be given. Professionals (and non-disabled lay people) assumed that they “knew best.” (1997, p. 639) Although there was not the human rights framework that has been developed today, Thomas uses the word “right” when discussing the women’s desire to become mothers and homemakers. This early study laid the groundwork for scholars such as myself by embedding the research from lived experience and centering the voices of the women. As a disabled mother and scholar, Thomas set the tone for respectful, feminist critical disability research wherein insiders conduct the research. As with Thomas’s (1997) work, the literature demonstrates that disabled women feel a need to perform mothering in a way that appears “normal” (e.g., Grue, 2001; Grue & Lærum, 2002). Grue and Lærum (2002), in a Norweigan study, explored the experiences of 30 physically disabled mothers. Grue and Lærum found Chapter 3: Research Context 70 that women feared that if they did not succeed in presenting as good mothers, they risked losing custody of their children. Further, they heard that women experience becoming mothers as a way of “‘capturing’ a gender or ‘recapturing’ a lost gender” (Grue & Lærum, 2002, p. 671). Similar to Ridington (1989), mothers in this study had concerns about the level of “help” they received from their children; an inherent risk that they would not be seen as a “good” mother. This study included what growing up with a disability was like and how women navigated their transition to motherhood. Grue and Lærum framed their research within the backdrop of the 1981 UN year for disabled people, specifically Norway’s response. They reported that many women felt that “other people did not recognize the mother/child relationship between the child sitting in the pram or running around and the woman in the wheelchair” (Grue & Lærum, 2002, p. 676–677). Further, they identified that disabled mothering can look different; the ways that disabled mothers keep their children safe sometimes looks un-safe and contradictory to what nondisabled mothers think is acceptable. Finally, this study connects how “ordinary” and disability can appear contradictory for disabled mothers navigating our society, in particular how other mothers react to disabled mothers, and how others closely monitor disabled maternal bodies. Further to the conversation of oversurveillance and the “ideal mother,” Malone (2014), using a critical feminist and social model approach, explored five disabled women’s experiences of mothering. Using a qualitative phenomenological design, Malone identified two overarching themes: Chapter 3: Research Context 71 The first of these, experienced by all of the mothers, had to do with ideal motherhood; its expectations, rewards, challenges and performance. The second overarching theme, of surveillance, was so intertwined with within the notion of ideal motherhood that it was hard to separate the two. (Malone, 2014, p. 200) Malone concluded that “current construction of ideal motherhood, risk and adequacy to parent regarding young mothers with intellectual disabilities is problematic” (2014, p. 206). Many of the studies (see section below) identified risk as a category related to disability and motherhood. She writes: Basing parental adequacy on ability (whether that is cognitive, developmental or age related) is problematic because it focuses on risk alone, personalizes larger structural issues and examines the challenges associated with parenting without examining larger contexts such as poverty, access to healthcare, employment, education, parenting supports in a community, housing, etc. In addition, this processes of ignoring contextual issues and focusing on adequacy to parent essentializes the experiences of all the mothers and creates a higher risk for inadequate supports. (2014, p. 206) Although Malone used a social model understanding of disability, this research also connects to many human rights indicators of equality. Smaller, cohort specific studies of disabled mothering can disrupt and inform the bio-medical, health, and social work research that too often fixates on disabled bodies as being at inherent risk for no other reason than for being disabled. Malone’s research identified the Chapter 3: Research Context 72 harm in ignoring the larger systemic barriers supporting the direction of my dissertation study. Privileging disabled mothers’ experiences from their perspective and approaching disability from a social model awareness of the systemic barriers separates these projects from the health or bio-medical research discussed in the section below. Medical model focused research often separates women from the systemic barriers they are experiencing, and places difficulties or barriers into an individualistic model wherein challenges are addressed on a person-by-person case (or occasionally, on a disability-by-disability case). Whereas understanding discrimination, barriers and stigma from a social model begins the work of unpacking the magnitude of the how women experience mothering in a society that excludes their lived experience. Risk and Outcomes in Health Research: Health Studies A growing area of bio-medical and health sciences research on maternal care is focused on pregnancy, perinatal care, labour and delivery and disability, and outcomes or risk. The examples below demonstrate how this research is approached, that is, a particular disability or condition is named, and then a measure of risk or outcomes is applied. Sometimes this research focused on a particular country or region. Research in this category is generally quantitative, bio-medical and focused on medical risk and outcomes. Such research provides a different angle for understanding perspectives of disabled women. This section is only meant to be a brief introduction into this area of literature as much of it is quantitative and presented as statistical data. Chapter 3: Research Context 73 Medical research on disabled women tends to present the idea of pregnancy and disabled bodies as inherently risky. For example, Ofir et al. (2015) focused on risk factors during pregnancy. Employing a retrospective cohort study of 265,741 deliveries during 1988–2012, Ofir et al. investigated “whether visually impaired women are at higher risk for adverse maternal and perinatal complications” (2015, p. 519). Of these deliveries, 80 were women with “visual impairment in one or both eyes” (Ofir, 2015, p. 519). As part of their research, they looked for a connection to autoimmune conditions related to the condition. Ofir and colleagues concluded that there were some risks for women with “visual impairment” but concluded, “nevertheless perinatal outcomes is comparable to the general population” (Ofir, 2015, p. 519). Parish et al. (2015) focused on pregnancy outcomes for women in the United States with intellectual and developmental disabilities (IDD). They reported negative outcomes for this population: Women with IDD were more likely than general obstetric population to have adverse pregnancy and fetal/infant outcomes. Women with IDD who delivered tended to be younger than other women and were more likely to be black. They were also more likely to have public health insurance coverage. For women of childbearing years, Medicare coverage would generally be an indicator of eligibility for Social Security Disability Insurance (SSDI), the federal disability insurance program. (2015, p. 437) Of interest in this study was a recognition that these negative outcomes may be a result of multiple identity positions, including race and socioeconomic status. Chapter 3: Research Context 74 These health and risk focused studies are important in the larger context of understanding the embodied experience of disabled women. Further, understanding the experiences from the women’s viewpoint is generally not part of these studies, rather, researchers rely on data mining through access to files. I would argue that studying outcomes from a medical file only creates research that is weighted very much in the medical practitioner voice and not in the experience from the woman’s perspective. Too often, this research recreates as Daniels (2019) argues the “ableist biopolitics of the pregnant body” and emphasizes the “individual responsibility for risk management” (p. 117). Combining this research with a sampling of one-on-one interviews or focus group interviews with women would make for stronger recommendations. Women with disabilities know what they need and have excellent problem-solving skills. Too often they do not have the voice at the table to share these solutions. Data Mining and Secondary Analysis of Studies As noted above, there is a fair bit of health research that reviews publicly available surveys and medical files connected to bodies. Some studies have moved outside of a focus on risk and outcomes to recommend policy and practice implications. Again, these are embedded in a bio-medical understanding of disability, but sometimes, through partnerships with nongovernmental organizations, tangible, potentially useful recommendations are made. One such study was conducted in Ontario. Brown et al. (2020) partnered with IC/ES (a nongovernmental research organization, previously known as the Institute for Clinical Evaluation Sciences), and the Ontario Ministry of Community and Social Services, to track deliveries of women Chapter 3: Research Context 75 with IDD, aged 18 to 49 between 2002 to 2012. They reviewed the records of 3,932 live births and stillbirths. They identified that women with IDD were more likely to have fertility issues and complications. The study also identified that receiving healthcare within a general practice is problematic for these women as many general practitioners are not prepared for the particular issues of women with IDD. The researchers identify a need for accessible information about contraception, risk and benefits, as well as more accessible postnatal information and services. They also recommend longer healthcare visits for this population. Finally, the authors recommend a need for better overall reproductive health education for this population. Such studies are important in that they are able to identify patterns. Brown et al. continued this partnership with IC/ES and expanded their study to include other disabilities. In 2020, Brown et al. published the rates for pregnancy in disabled women of reproductive age compared to nondisabled women of the same age, again in Ontario, and found that “one in 10 reproductive-aged women has a physical, sensory, or intellectual/developmental disability” (p. 189). A key area of concern identified was higher rates of pregnancy in adolescents with intellectual/developmental disabilities. Brown et al. concluded that “better access to sexual health education and contraception” is needed for this population (2020, p. 189). Again, these large quantitative studies that examine data sets can direct targeted research and policy implications. Tarasoff et al. (2020) conducted a systematic review and meta-analysis of 23 studies that focused on risk, delivery, and postpartum complications for women with disabilities. They concluded that “maternal disability is associated with increased risk Chapter 3: Research Context 76 for perinatal complications” (2020, p. 27). They indicate a need for further study into why this appears to be the case. From a bio-medical and care model, this research is important, however, further research might pair focus groups or interviews with disabled women to better understand where they see gaps and solutions. Redshaw et al. (2013) and Malouf et al. (2017) both conducted secondary analyses of the 2010 and 2015 National Surveys of maternal experience of women in England. In the 2010 National Survey, despite a national estimate in England that approximately 9.4% of women giving birth are living with a disability or long-term illness, only 6.14% of the women to complete the survey that year identified as living with a disability. Redshaw et al. found that women living with a disability “appeared to use maternity services more than nondisabled women. Most disabled women were positive about their care and reported sufficient access and involvement, but were less likely to breastfeed” (Redshaw et al., 2013, p. 1). That said, they did note different experiences that divided into specific disabilities: Physically disabled women used antenatal and postnatal services more, but had less choice about labour and birth; the experience of those with a sensory impairment differed little from the nondisabled women, but they were more likely to have met staff before labour; women with mental health disabilities also used services more, but were more critical of communication and support; women with learning disabilities2 and those with multiple 2 The term “learning disabilities” is used in the UK and means the same as intellectual or developmental disabilities in Canada. Chapter 3: Research Context 77 disabilities were least likely to report a positive experience of maternity care. (Redshaw et al., 2013, p. 1) What was strong with this particular paper was how the data was able to be disaggregated and understood in the context of specific disabilities. Malouf et al. looked at the 2015 survey; of the 20,094 women completing the survey, 9.5% identified as having a disability: The findings indicate some gaps in maternity care provision for these women relating to interpersonal aspects of care: Communication, feeling listened to and supported, involvement in decision making, having a trusted and respected relationship with clinical staff. Women from all disability groups wanted more prenatal contacts and help with feeding. (Malouf et al., 2017, p. 1) These findings underscore the importance of centering the voices and experiences of disabled mothers when considering recommendations for policy and practices. Finally, Thomas (2001) discussed the attitudes and practices of physicians in the UK by conducting a secondary analysis of two qualitative data sets (n = 68; n = 17). Thomas concluded “that disabled women health service users are at risk of experiencing oppressive medical practices because two forces of oppression appear to be frequently, and interactively, in play: patriarchy and disablism” (2001, p. 245). Although focused in health studies, Thomas explicitly connects health and disability to sociology and explicitly to disablism within these systems. Her work on disability and reproductive health is rooted is a social relational model of understanding of Chapter 3: Research Context 78 disability. Thomas connects the failings of current reproductive medical practice, and the barriers within this system to larger oppressive systemic issues. Overall, there appears to be a large amount of data that was available to researchers. In the context of Canada, it is difficult to get access to such large data sets when used in the context of mixed methods such as the inclusion of focus group conversations, follow up interviews, or applying a human rights lens to the research the research can be used to investigate beyond what was experienced to how can these experiences be improved. Chapter Summary Despite concerns women have about how their bodies will react to pregnancy, disabled women often still choose to have children. Although there is risk involved, it is critical to support women by giving them relevant information, not imagined information or outdated assumptions about disabled lives. Further, studies and ultimately care that frame women’s stories with an awareness of rights and autonomy, has the ability to improve the experiences and outcomes for women who decide to have a family. The many different approaches taken to conducting research on disability, maternal health, choice, and experiences was demonstrated by this chapter. Multi-pronged approaches to understanding the experiences of disabled women in relation to their sexual, reproductive and maternal rights lead to strong research that has the potential to address systemic discrimination and ableism (e.g., Daniels, 2020). To address discrimination, the experiences of those affected need to be documented. As Rioux (2015) argues, “access by itself or monitoring without Chapter 3: Research Context 79 participation, does not guarantee rights” (p. 4). Moreover, in advancing a DPRI approach to research, Rioux promotes explicitly evaluating the outcomes and effects when looking at particular programs and policies, rather than inputs (2015, p. 6). It is in assessing outcomes that one can determine if human rights are being realized. Studies that move beyond documenting risk and outcome and move into pragmatic policy and service implications have a greater chance of addressing systemic ableism. Specifically, having access to the large data sets that have been produced in some countries can identify the areas of concern to be further researched. Understanding disabled mothers’ perspectives and their experiences of parenting within a human rights framework (Mykitiuk and Chadha, 2011) can contribute to dialogue regarding the continued challenges that disabled mothers experience both in maintaining custody and access to their children, and in receiving appropriate supports and services as required for their disability needs. However, as many of the above studies indicated, there needs to be a will by the government and the systems to address discrimination and implement the recommendations. Chapter 4: Methodology 80 Chapter 4: Design and Methodology This chapter explains the design and methodology of this project. I provide an overview of the research framework and positioning of this study. I then outline a brief description of DRPI and life course history methods and how I combined these two distinct methods to create a novel approach to document disabled women’s sexual and reproductive experiences across key life history milestones. I then discuss the research project, including ethics, recruitment, consent, and data collection. I provide an overview of the demographics of participants. Finally, I discuss the coding, analysis, and reflexive inquiry approaches I took in developing my findings. Research Framework This research project used a rights-based approach (Degener, 2016b; Gabel, 2016) to explore the experiences of disabled mothers in Canada. In particular, I draw from DRPI human rights monitoring methodologies to contextualize the experiences of participants in a contemporary context. Rights-based approaches (RBA) have gained momentum in both academia and civil society as a framework for research. RBAs vary widely in their use and serve as a framework for understanding problems, experiences and solutions in human rights terms (Gabel, 2016). A rights-based approach “places equal value on process and outcome. In rights-based work, goals are temporary markers that are adjusted as people perpetually re-evaluate and understand rights in new ways calling for new approaches to social issues” (Gabel, 2016, p. ix). A rights-based approach assumes that all humans hold rights. As stated on the UN Human Rights Office of the High Commissioner website: Chapter 4: Methodology 81 Human rights are rights inherent to all human beings, whatever our nationality, place of residence, sex, national or ethnic origin, colour, religion, language, or any other status. We are all equally entitled to our human rights without discrimination. These rights are all interrelated, interdependent and indivisible. (“What are human rights?” para. 1) Further, the human rights approach, defined by Stein and Stein (2007) as a disability human rights paradigm, necessitates the participation of “people with disabilities in the process of societal reconstruction so that they may assert their rights” (p. 9). The DRPI project was initiated to create a “collaborative project to establish a comprehensive, sustainable international system to monitor human rights of people with disabilities” (DRPI, n.d.). DRPI uses a circular method of monitoring that considers both rights compliance [of a state in legislation and policy] and rights enjoyment [of people with disabilities within the state] (Pinto, 2015, p. 279). Although I might have focused solely on RBA methodologies, I believe DRPI is a useful tool to analyze and challenge where current discrimination and barriers exist in law and in practice, DRPI also lays the groundwork for future interventions, including submission of parallel reports to the UN-CRPD Committee. DRPI argues that people with disabilities must be engaged at all levels of a monitoring project in order to ground the outcomes and solutions in an emancipatory paradigm (Rioux et al., 2015). Grounding both data collection and analysis in this manner reinforces the goals of human rights projects in creating substantive and transformative change. As indicated by Gabel (2016), “a central dynamic of a rights-based approach is thus about identifying root causes of social issues and Chapter 4: Methodology 82 empowering rights holders to understand and if possible claim their rights while duty bearers are enabled to meet their obligations” (p. x). As such, this project engaged with women with disabilities to understand the links and impact of current legislation, policy, and practice on their rights as mothers, in a Canadian context. This project builds on the work of DRPI and uses an emancipatory paradigm and a rights-based approach to monitoring (DRPI, 2010). DRPI typically uses a holistic approach to research and is threefold: the methodology reviews current and applicable legislation and policy, conducts personal interviews with disabled individuals, and completes a scan of media-based portrayals of disabled individuals (DRPI, 2010). For the purposes of meeting the requirements of a dissertation, I have adapted some aspects of the methodology. In particular, although I reflect on participants interactions with legislation, policy and programs, I did not conduct a systemic review of policy and law for this dissertation—this is future work to be completed. As well, I did ask participants about representation and I do reflect on their answers, however, for this dissertation, a full review was outside of this project, but is identified as an area for future work. DRPI tools can be used to build a case for future work, including starting with “individual experiences monitoring tools to gather and analyze the lived rights experiences” DRPI (2010) (See also Boucher & Fiset, 2015). This research is a first step in a larger commitment to monitoring the experiences of disabled mothers in Canada. Although finalized DRPI project generally use all three elements for a finalized report, the work is often conducted by separate researchers, or uniquely. The size and scope of a dissertation did not allow me to tackle all three of the tools, therefore, I focused on individual monitoring and Chapter 4: Methodology 83 documenting how disabled mothers are experiencing their rights. Further, to illuminate some aspects of women and girls reproductive and sexual health experiences, choices and decision making across the lifespan, I have expanded the study outside of the usual DRPI five-year parameter. As a disabled woman, I was involved in overseeing all aspects of this project with the support of a supervisory committee that is not exclusively comprised of people with disabilities. In this research, I explored the life experiences of disabled parents within the context of their life trajectory, specifically how this can contribute to understanding how various systems affect their life choices and related experiences. Recognizing that “disability exists in the shadows of the public awareness and at the periphery of policymaking” (Prince, 2009, p. 1), it was my goal to build on previous work to further uncover and reveal the stories of disabled mothers. Methodologies informed by feminist, emancipatory, critical disability studies can provide a framework from which to document how disabled women make decisions related to sexual and reproductive health, in particular, choices about whether, when, and how to have a family. As Boucher & Fiset write, “The DRPI approach offers an innovative way to stimulate social change related to disability and human rights as action is based on the empowerment and capacity building of individuals and collective partners” (Boucher & Fiset, 2015, p. 133). Grounding the methodologies in this project within a human rights context created a space wherein the participants were able to explore and share how they arrived at their current family status. As Rioux (2015) writes: “Drawing from information about both systemic discrimination and individual experiences collected and collated by persons with Chapter 4: Methodology 84 disabilities themselves, the methodology also bridges the gap between researcher and researched, and provides an evidence-based snapshot of disability rights” (p. 6). There are few studies that examine the lives of mothers with disabilities. Of those that exist, either mothering was an afterthought to the study or the studies are singular stories (National Council on Disability, 2012; Ridington, 1989; Smith, 2008a or b, 2011, 2012; Thomas, 1997). Although important as case studies, they cannot be used to argue for larger, systemic change. As Rioux (2015) states: Careful and detailed monitoring...and judging it against the CRPD and other international rights treaties is a key and central way of doing this. While there may be several approaches to monitoring, … the participatory nature of monitoring of rights has to be a priority. (p. 7) Therefore, the methods of this research were a pragmatic approach to documenting the lives of disabled mothers from a human rights perspective, connecting to policy and legislation implications where appropriate. Positioning: Emancipatory Research Paradigm This project is grounded in a feminist, emancipatory paradigm. Oliver (1992) writes that the emancipatory paradigm “is about the facilitating of a politics of the possible by confronting social oppression at whatever level it occurs” (p. 110). Oliver (1997) argues, “you cannot be independent in researching oppression: you are either on the side of the oppressors or the oppressed” (p. 17). This paradigm is referred to as both a transformative paradigm and an emancipatory paradigm. For this project, these terms are interchangeable and are equated with a paradigm that is both political and transformative as related to the rights of disabled women. Oliver Chapter 4: Methodology 85 (1997) argues that one can only judge whether a project is emancipatory after the project has been completed. Others, such as Leavy (2017), believe that transformative research is a philosophical and guiding paradigm. And, for projects such as DRPI, this paradigm is all encompassing and foundational to the project. Oliver (1997) suggests that researchers reflect on their motivations for conducting research by asking: “What did we think we were doing: pursuing knowledge for the benefit of humankind? Informing policy and practice? Helping disabled people? Building networks? Developing our own careers? Having a freebie at someone else’s expense?” (p. 16). These questions guided my own reflexivity; by adopting an emancipatory paradigm, “researcher and researched become changers and changed … [by] building upon trust and respect and building in participation and reciprocity” (Oliver, 1997, p. 16). Therefore, in the context of my research project with disabled mothers, I needed to bridge knowledge between women and the larger disability movement and facilitate a connection between the experience of disabled mothers in the context of discrimination, the national accessibility act consultations, and the CRPD. I noted requests for information or resources during the interviews, and at the end of the session, I shared resources, programs, and organizations that I was familiar with. I then followed up, linking women to these resources. As well, women were asked during the consent process if they were interested in receiving information about the findings of the study once completed, or when I was defending my dissertation. Most women signed the form for me to contact and share that information after the research is completed (see Appendix A). Some women who did Chapter 4: Methodology 86 not sign the form at the start of the interview, asked if they could sign it after we were finished. I will share any community published articles or reports on social media, and with organizations in the disability community to ensure the maximum distribution and sharing of knowledge. If I do this well, I will address the three fundamental objectives of the paradigm: “reciprocity, gain and empowerment” (Oliver, 1997, p. 17), implicitly recognizing that empowerment is not a gift to deliver; it is a process taken up by groups seeking to eradicate discrimination. A Novel Approach to Human Rights Monitoring: Combining Disability Rights Promotion International with Retroactive Life Course History Methods In this study, I focused on the voices of participants, and only discussed legislation and policy in the context of the women’s narratives, and in the context of recommendations. Although I did ask the women in my interviews to reflect on media, popular books, television shows, movies, or art that they encountered that reflected bodies that looked like them. Given the very few examples, I only address the absence of representation as noted by participants in my discussion chapter, Chapter 6, and in my recommendations. While a larger DRPI project would conduct a large scan of media and legislations, this was beyond the scope of the present study and are, therefore, taken up in my discussion chapter where I reflect on women’s responses and discuss these topics in the context of media and popular culture in a general sense. Retroactive Life Course History Methods Life course history methods involve retroactive life history interviews with participants in order to collect life history narratives—life stories. Informed by the Chapter 4: Methodology 87 research question(s) that ask participants to reflect on their memories of specific experiences growing up, these narratives are then organized into findings according to the life course milestones of the participants (Giele & Elder, 1998; Priestley, 2003). For many persons with disabilities, their life course does not flow along the same trajectory, nor at the same pace as the established “norm” for a particular “able-bodied” generation or cohort; that said, understanding the life course experience of disabled persons can be useful in challenging societal (mis)conceptions of the lived experience of disability in a given context and generational cohort. Priestley (2003) suggested: “Using [a] life course approach offers a unique way to make links between the individual lived experience of disability in the macro social context in which disabled lives are played out” (p. 245). Originally, life course research and methodology involved longitudinal, multi-generation projects that followed a specific cohort. Priestley (2003) redirected this area of research in specific ways to address research with people with disabilities, a group that historically was not included in life course history research. He argued that by gathering retroactive qualitative life story narratives or life history narratives, researchers can pick up the threads of marginalized individuals and use the data that is gathered to examine the experiences of disabled individuals in specific geographical and generational contexts (or other identified contexts). Life course theory situated the experiences of disabled mothers in my research within their own life trajectories while connecting them with a cohort who share similar life trajectories. Using life course theory of connecting a cohort’s experiences within a specific time and location enabled my project to be grounded in Chapter 4: Methodology 88 the larger contexts while addressing the specificities of disabled mothers in Canada, since ratification of the CRPD in 2006 (UN General Assembly, 2006; see also George, 2009; Giele, 2009). By situating a smaller sample size deliberately within the context of qualitative, intense examination, and understanding the limitations as well as the strengths of this methodology, a researcher using qualitative life history narratives can provide a far richer source of data than more traditional qualitative and longitudinal studies. Further, by embedding a DRPI human rights framework in the Interview Guide (Appendix F), the outcomes of this research provided a snapshot of the situation for disabled mothers in Canada at this time. As stated by Mykitiuk and Chadha (2011): With an international human rights discourse and literature, greater recognition must be paid to the linkages between social prejudices, systemic discrimination and barriers that cause the isolation and marginalization of parents with disabilities and thereby contribute to the victimization of their children. (p. 193) Understanding this life trajectory, and by highlighting specific milestones, this research identified some of the gaps and barriers that disabled women encounter that are different than their able-bodied peers. The Research Project Ethical Considerations This project was approved by the UBC Behavioural Research Ethics Board (BREB) (H18-00995) (see Appendix B). Approval was sought and given prior to Chapter 4: Methodology 89 participant recruitment. All processes of the research met the guidelines of the BREB. Participants were recruited through third party sharing of the recruitment poster (see Appendix C) except in cases where I personally knew the women and they initiated contact with me regarding participation. This was the case with four participants. Participants were asked to sign a consent form (Appendix A) prior to interviewing, were informed of potential benefits and risks of participation (see Appendix D), and were provided with information about resources when applicable. Confidentiality was considered throughout the research (see Appendix E). For example, pseudonyms were used when sharing the women’s personal experiences. Participants’ geographic locations were identified by province and further as urban, suburban, or rural. Although there were technically more categories, I felt that confidentiality would be lost if these categories were identified demographically. I chose not to ask overly detailed demographic information about the participants; rather, I used open-ended questions asking what areas were significant to them. These areas are not explicit within the demographic chart, rather they are discussed in more general terms in my findings and discussion: for example, some women disclosed their connection to the employment that they do or to their cultural/family background (e.g., Indigenous, or immigrant/first generation Canadian). Recruitment, Consent, and Setting up the Interviews Women were recruited through internet postings on disability group Facebook pages, listservs, and word of mouth (see Appendix C). Women who were interested in the study, and who fit within the criteria outlined in the study—participants were over 19, had full or shared custody of at least one child under the age of 19—Chapter 4: Methodology 90 emailed me directly and I shared the information letter with them. If they decided they wished to participate in the study, I then shared the consent forms and answered any questions they had about the research. Women were advised that the interview would take approximately one and half hours to two hours, and they were able to break up the interview into shorter segments if they wished. Two women chose to conduct their interviews in two parts. Before beginning the interview, I went over the consent form and asked each woman if they had any questions. Fourteen interviews were conducted using the UBC video conference platform and four were conducted by phone at the request of the participants or technical issues. Interviews were recorded and transcribed. Identifying data was anonymized or deleted from the transcripts. As I am personally a part of this community, I used my personal networks (e.g., Pacific DAWN, Council of Canadians with Disabilities, National Educational Association of Disabled Students) and social media to send out the invitation to participate. A snowball sampling technique is generally used with disability community organizations connecting the researcher to key and active members in the community who then connect the researcher to others (Samson, 2015, p. 239). According to Woolley and Lockard (2016), there are two generally accepted definitions of snowball sampling. One relates to network structures (Woolley & Lockard, 2016, p. 322), and the second, used by DRPI researchers, uses participants’ networks to identify other individuals to participate. As both Samson (2015) and Woolley and Lockard (2016) suggest, this method works well in Chapter 4: Methodology 91 previously hidden populations because it connects directly into the community and outside of traditionally accessed institutes. DRPI methods for recruitment and data collection ensure that participants give free and informed consent and that individuals are able to withdraw participation at any time (Samson, 2015, p. 239). For this project, consent documents were shared ahead of the interview to ensure that individuals had time to reflect on the project. Consent forms used plain language and were offered in digital, and oral forms (read aloud prior to interview). Participants were able to ask questions and review the consent form with me prior to the interview beginning. Women read, signed, scanned, and returned the consent forms via email. Two participants gave oral consent related to their disability (both were blind and did not have someone to assist them to sign on the correct pages). Their oral consent was noted in their paperwork. One individual had the interview read aloud prior to the interview related to accommodating her learning disability. She then signed and forwarded the paperwork to me. A total of 18 women agreed to participate. Interviews were conducted with women who live in British Columbia and Ontario, Canada. Each interview was conducted using the University of British Columbia (UBC) video conferencing system or telephone. Not all women had access to computers and internet, and two blind women preferred to use the phone. Eleven women were located in British Columbia and seven were in Ontario. After the interviews were completed, I created pseudonyms for each of the participants. As the process of recruiting, going through the consent process and Chapter 4: Methodology 92 conducting the interviews is very time consuming, I did not ask the participants to create their own pseudonym, rather, I compiled a list of names and attached names to interviewees that I felt reflected how I saw them, and my own associations with specific names. The names as displayed in the charts do not reflect the order of the interviews, rather, I created a random order, again to maximize anonymity. Of note, there were several potential participants who fell out of the criteria of this project who were angry and distressed at the restrictions of a project of this size. To understand how current policy, practice and legislation impact disabled mothers, I wanted to hear from mothers who were currently raising children—although research indicates that very little has improved for disabled mothers, challenging current policy, programs and legislation requires understanding contemporary experiences. I did receive emails from several women with adult children who wished to participate despite having grown up children, and I explained the parameters to them. However, one woman from BC misrepresented her situation during the prescreening process because she was desperate to have her story heard. We were about 25 minutes into the interview when it became apparent that her children are adults with their own children. We did not complete the interview. I provided her with information for connecting to possible helpful resources. I believe this speaks to the importance of documenting the experiences of this population in a larger context with wider parameters. From the frustration that women shared in their emails and in this particular situation, it was apparent that women are desperate to share their stories and confront the discrimination and barriers that they face in raising their families. Chapter 4: Methodology 93 Semi-Structured, Life History, Narrative Interviews It is important to understand the experiences of disabled women by highlighting more than a snapshot of their current circumstance. Life course methods, especially those developed by critical disability researchers can be incorporated within the DRPI approach to address some of these questions (Elder, 1977, 1981; Elder & Giele, 2009; Giele, 2009; Giele & Elder, 1998; Priestley, 1997, 1998a, 1998b, 1998c, 2001, 2002, 2003; Priestley & Rabiee, 2002; Priestley et al., 2010). The component of the DRPI monitoring model that I focused on for this research was that of conducting personal interviews in order to document the lived experiences of disabled mothers. Although the usual five-year window of monitoring was expanded, I was careful to include questions regarding women’s experiences of reporting (or not reporting) complaints and their reasons for these decisions. There is a long history of disabled lives being told through the lens of a medical or positivist model (Felske, 1994). The DRPI model seeks to disrupt the medical narrative and give space to women’s voices and their understanding of their experiences. The DRPI (2015) monitoring methodology involves private, face-to-face interviews during which persons with disabilities are asked both open-ended and semi-structured questions designed to allow them to tell their own stories. Persons with disabilities are encouraged to identify the rights issues that are most important to them and thereby direct the focus of monitoring to the most pressing matters. This approach counters the historical experience of persons with disabilities being the objects of studies conducted by so-called experts” from medical, rehabilitation, and Chapter 4: Methodology 94 other professions, recognizing instead that persons with disabilities are experts on their own situation. Instead, documenting the stories of disabled mothers establishes disabled mothers as the experts on their own experiences. Privileging certain voices addresses historical discrimination and silencing in research. By allowing mothers to tell their own stories, I participated in a practice to foreground their experiences and perspectives. The interview questions were modelled after the established DRPI questions while taking into consideration a life history narrative approach. I took the DRPI interview questions and adapted them by incorporating life course methods to suit the aims of this project (see Appendix F). The questions sought examples from the women’s lives, and then I used prompts to elicit participants’ thoughts regarding how these experiences relate to human rights and inclusion. Because I sought to contextualize the experiences of mothering into a life course framework, I also developed a series of questions to explore the women’s reproductive health education and experiences prior to and during pregnancy. Again, these questions were framed to elicit and connect responses to a human rights context. The interviews were semi-structured and divided into seven sections. Questions were adapted to women’s circumstances, for example, mothers who adopted or who used in vitro fertilization (IVF) were given an opportunity to discussion their experiences in becoming mothers through these means. Although the Interview Guide (Appendix F) appears to be quite long, in fact, the process moves rather quickly. As I added the life course retroactive questions, it was anticipated that some interviews may exceed the original DRPI length of Chapter 4: Methodology 95 interview. I addressed this by offering women the opportunity to take breaks, or to do the interview in two parts. The interviews ranged from 1.5 to 2.25 hours in length). Description of Interview Participants Eighteen mothers who reside in Canada participated in the study (seven in ON and 11 in BC). Eight participants identified as living in urban settings, six identified as living in suburbs and four identified as living in rural and/or remote settings. Seven participants identified as single, and 11 identified as having a partner or being married. Ages of participants ranged between 28 and 55 at the time of the interview. The women interviewed were over 19 years of age, had full or shared custody of their children, lived in either British Columbia or Ontario, and had at least one child under the age of 19. Due to a lack of funds for translation, I was not able to interview Deaf/deaf women or women whose primary language is other than English for this research project. I was able to interview women with a diverse experience of disability; from varying socioeconomic and education status; differing relationship statuses; and number of children. Only one woman identified as Indigenous, however, I did not explicitly ask about ethnic or cultural background. Three individuals identified as new Canadians. Instead, I had an open-ended question about whether women felt that they had experienced discrimination based on other factors of their life. All but one of the women completed their high school education, with the majority having completed higher education. Many women spoke eloquently about the path that led them to higher education; in particular, seeking higher education Chapter 4: Methodology 96 was a way to be taken seriously in society and a way to push back against discrimination (see Table 1). When participants were asked to describe their disability, five women identified as having one primary disability, however, the other participants identified as having up to four co-existing conditions (see Table 2). The majority of the participants were raised by one or two parents growing up. Table 3 presents the family structure growing up and relationship status at the time of the interview of my participants. Table 4 presents information on pregnancies, including miscarriages, abortions, and current number of children including stepchildren, natural and adopted. Table 1 Participants’ Completed Level of Education Incomplete high school 1 High school 3 Trade or Associate degree 2 Undergraduate degree 4 One graduate degree 4 More than one graduate degree 4 Chapter 4: Methodology 97 Table 2 Self-Described Disability Name Primary disability Secondary disability Other disability Other disability Kadence Physical/mobility (wheelchair user), spina bifida, diagnosed age 30 Cerebral palsy, diagnosed at birth Avascular nexcrosis Platelet disorder Eleanor Heart, diagnosed birth Chronic pain, fibromyalgia / neuropathy, deteriorating disks MH: anxiety disorder, ADHD Quinn Chronic and severe depression, diagnosed when a teenager LD, childhood Diabetes type-2, after birth of child Frida Autistic, diagnosed age 30 Mobility, Ehlers-Danlos syndrome, POTS, diagnosed age 30 MH:, complex post-traumatic stress disorder (C-PTSD) Rhea Blind, diagnosed age 2 MH: depression and anxiety Nina Mobility, limb difference, diagnosed at birth Diana Chronic pain, episodic, fibromyalgia, CRPS/RSD, nerve damage to one limb, diagnosed age 14 MH: bipolar disorder, diagnosed age 43 Ophelia Physical, mobility, spinal cord injury, incomplete paraplegic, injury 2 years previous to study Maia Physical, cerebral palsy, diagnosed at birth ADD/ADHD, diagnosed age 28 Heather Severe learning disability, diagnosed age 12 Vision issues, vision processing disorder, diagnosed age 12 Chronic autoimmune issues Heart condition, diagnosed age 28 Cassia Physical disability, Black Fan’s disease, blood, diagnosed age 1 Pearl Blind, diagnosed at birth Lily Interstitial cystitis, diagnosed age 14 MH: PTSD, diagnosed 2016 Chronic pain, fibromyalgia, POTS Iris MH: borderline personality disorder, “whole life” LD, since childhood IBS, whole life Depression, anxiety, ADD Selena Legally blind, albinism, diagnosed at birth Aster Learning disability, diagnosed age 8 MH: dissociative disorder, adult Beatrix Physical, spina bifida, mobility, birth Neurogenetic bladder Gail Autism Hyper-mobile, Ehlers-Danlos syndrome Chronic pain, fibromyalgia MH: C-PTSD, other growing up Chapter 4: Methodology 98 Table 3 Family of Origin and Current Family Status Name Family status growing up Current relationship status Custody access if not with father of children Kadence Two parents, one sister, extended family on East Coast Single Eleanor Father deceased, mother, three siblings Single Full custody of older two, shared guardianship of youngest daughter Quinn Two parents, younger sister Married, male partner Frida Parents divorced age 5, younger brother, stepbrother, extended family, homeless age 15 Single, divorced Shared custody Rhea Parents divorced age 3, raised by mother and stepfather from age 6, grandparents Single, divorced Shared custody Nina Two parents, two older half-sisters, parents from outside Canada, extended family overseas Married Diana Two parents, younger sister, extended family Divorced from father, new male partner Shared access Ophelia Two parents, younger brother, extended family Married, male partner Maia Two parents, brother, extended family, left home age 15 Male partner Heather Two parents and older brother Single Cassia Parents divorced, two full siblings, two half-siblings, estranged from mother Married Pearl Indigenous, parents divorced age 12, seven siblings, second youngest Male partner, unmarried Shared custody of younger son Lily Two parents, younger brother, extended family Single Iris Parents divorced age 2, stepfather age 3, older sister, six half-siblings, extended family Common-law Selena Parents divorced age 12, younger brother Married Aster Two parents, older brother, larger extended family Married Beatrix Two parents, younger sister, no extended (everyone overseas) Married Gail Two parents from [overseas], older brother, older sister, extended family overseas Single Co-parenting Chapter 4: Methodology 99 Table 4 Number of Children Name Pregnancy 1 Pregnancy 2 Pregnancy 3 Pregnancy 4 Pregnancy 5 Kadence Daughter (10 months), IVF, natural birth Eleanor Miscarriage (at age 18) Son, (18), natural birth Miscarriage at 14 weeks Daughter (16), born early, natural birth Daughter (9), natural birth Quinn Daughter (15), natural birth Frida Sons (twins, 15), natural birth Son (12), natural birth Rhea Miscarriage (at age 26) Son (15), born early, emergency cæsarean Son (12), cæsarean Nina Son (6), intrauterine insemination, cæsarean Diana Daughter (13), natural birth Ophelia Son (5), natural birth with complications Maia Miscarriage Son (18 months), IVF, emergency cæsarean Heather Failed adoption, son (3 months) Adopted daughter (moved in age 4, adopted age 5, current age 7) Cassia Daughter (13), natural birth Son (9), natural birth Pearl Son (37), natural birth Son, (32), natural birth Son (12), natural birth Lily Adopted son (adopted age 10/11, current age 17), fetal alcohol spectrum disorder (FASD) Iris Abortion Abortion Miscarriage Son (4), autistic, natural birth Selena Daughter (9), IVF, natural birth, gestational diabetes Son (7), IVF, natural birth Stepson, older Stepdaughter, older Aster Miscarriage (at age 25) Son (16), natural birth Son (13), natural birth Beatrix Son (10), natural birth Son (7), natural birth Gail Daughter (10 months), cæsarean Chapter 4: Methodology 100 Transcribing I started transcription of the interviews during the same period of time as I was conducting the interviews. Interviews were transcribed without noting verbal prompts and noises unless relevant to the questions (e.g., umm, okay, right). Sometimes I chose to add these prompts because it reflects the women’s method of storytelling or reinforced her answer. I particularly included in square brackets when women laughed in the context of the interview because I noticed a pattern of why and when women laugh, sometimes at egregious ableist behaviour. Often this laughter connected to a nervousness to sharing the experience in all of its absurdities, or reinforced a shared understanding of navigating mothering in a disabled body in an ableist and frustrating society. I believe that my role as an insider put women at ease. Our ability to share a moment of humour in an otherwise stressful or disconcerting memory allowed women to feel less isolated in their experiences. As discussed in the section on my position, my role as a disabled mother with adult children is a factor in this research. I openly shared my personal background with participants, and some of the mothers have known me and the work I am involved with for a number of years. When appropriate, I shared my own personal stories with women. Coding: Making Sense of the Interviews in the Context of a Life Course Human Rights Monitoring Project I began analysis and coding of the interviews after the interviews were completed, and transcribed. First, I reviewed the transcribed interviews and I removed identifying information, including removing place names, children’s names, Chapter 4: Methodology 101 hospital names. Personal names were removed and replaced with pseudonyms. These edits were to accommodate confidentiality. Of note, these interviews were generally one and half to two hours long, resulting in 35 to 50 page transcripts per interview. I initially began by coding the transcripts using NVivo, but I found that coding the transcripts manually was more conducive to my analytic process. Data was coded in two ways. The first was in alignment with DRPI coding themes related to human rights and the CRPD (UN General Assembly, 2006) principles of human rights monitoring. Three of these coded transcripts were shared with my committee for feedback. Feedback addressed the rich data within the interviews and we discussed ways I could reframe my coding to include themes in a manner that combined the participants’ life history journey within the context of a human rights project. I then recoded the data, after identifying themes (process described below). Given this, I moved away from NVivo and used more creative, and visual ways to identify the themes within the interviews. Themes and focused topics were reviewed by my three committee members. Each committee member read a minimum of one transcript and coded it independently. We then met to compare the codes and themes, and compared these with the themes from my own analytic process. I then went through a process of free writing, reflecting on the transcripts, feedback on the first round of coding, and my research questions. Then, I met with my supervisor to redefine and assess the coding as I completed the findings chapter, Chapter 5. The process I went through and the final themes are described below. Chapter 4: Methodology 102 First, I used reflexive free-writing exercises wherein I put the questions of my dissertation before me and free wrote what I had heard from the women. I used these free-writing exercises to identify the high-level themes discussed below. I then identified one colour per theme and went through the interviews again. I am a visual researcher and found that using one colour per theme helped me to “see” the themes that were consistent throughout the interviews. I organized these themes within life history milestones. As I was writing the findings chapter, I returned to these high-level themes throughout the process and reassessed them to identify examples of focused topics or shared experiences that demonstrated multiple themes (e.g., adoption, breastfeeding, transportation, housing). After setting the themes and coding, I had to revisit and assess the themes for the purposes of meeting the expectations of a dissertation. Personally, this was a difficult process as I believe all of the stories are powerful, and I was challenged to winnow these down. Future publications will highlight other aspects of the women’s stories. The free-writing exercise solidified five general themes related to the women’s narratives about mothering and human rights: accessibility, relationships, oversurveillance, trauma and embodiment. Each of the five broad themes arose within multiple components of the life course milestones: growing up, early sexual and reproductive experiences (prior to becoming mothers), pre-pregnancy experiences (including decision making, access to reproductive technologies, adoption, and planning for pregnancy and childbirth), pregnancy, labour and delivery, postnatal, and raising children. These five high-level themes are discussed in the context of the narratives, and I chose not to disrupt those narratives by Chapter 4: Methodology 103 creating a linear method of discussing these, rather, the linear aspect of the findings was created through the life course trajectory milestones. The focused topics are discussed in context within a specific life trajectory milestone as well and illustrate the shared experiences of participants in a given life history milestone. Within each life course milestone, there are often specific life course experiences. Organizing the coding and findings in this manner allowed for the writing to tell the women’s experiences in a cohesive and comparable narrative that begins from their early years and closes with their current experiences of raising children as disabled women. Reflexive Inquiry: Trustworthiness/Validity Reflexive inquiry is critical to emancipatory research and was key to the trustworthiness and validity of my interpretations. As discussed above, emancipatory research relies on a critical and reflexive process to uncover bias and prejudice through the project. There are many ways that researchers practice reflexive inquiry and below I overview ways that I engaged in it for this project. It is critical to engage in inclusive and respectful practice when approaching communities that have been previously ignored or taken advantage of. For me, this process includes artistic explorations related to theoretical readings, including memoing (Morse & Richards, 2013). Methods I included throughout the process of this project included: painting (oil on canvas and occasionally collage) during my theoretical preparations; and through reflexive journaling that included collage and writing (Brophy & Hladki, 2014; Helland, 1992; Holm, 2014; hooks, 1995; Hurworth, 2003; Sullivan, 2008, 2010, 2012). These processes strengthened the Chapter 4: Methodology 104 trustworthiness of my project as they were a place to document my explorations, reactions and processes to understanding the data and themes, prompting reflexivity about the analytic process as well as the genuineness of the findings as they were identified. Throughout the project, I engaged in reflexive journaling, including post interview personal reflections, to identify and uncover bias and prejudice. These opportunities for personal reflection can facilitate clearing aside and recognizing bias in order to privilege the voices of research participants. As Prince writes, “Questioning societal assumptions of normalcy and challenging beliefs about impairments are the daily stuff of disability struggles and a politics of impairment” (Prince, 2009, p. 31). I position my research in the belief that the women told the truth of their stories, and that their stories, as told from their perspectives are real and trustworthy. The onus is on me, as a researcher, to reflect their stories in a way that is respectful and honest. There are many ways to privilege the voices of marginalized participants. Leavy (2017) suggests that during the reflexive process, researchers can examine the role of power and influence within the project (p. 49). Further, the relationship between the researcher and subject has the capacity to empower and emancipate both the researcher and a research participant. Another opportunity to explore and influence is for the researcher to record their attitudes, beliefs, and responses throughout the process of the project (Leavy, 2017, p. 49); this reflexivity is described above through my practice of journaling. I have been engaged and employed in human rights work and activism for nearly two decades. As a disabled mother with adult sons, I have encountered many Chapter 4: Methodology 105 similar barriers, discriminatory practices, oversurveillance, and ableism—this is, in fact, the reason why I conducted this research—as the women I interviewed. As a disabled researcher, woman, and mother I am an insider to this research in many respects. While some argue that an “insider perspective” may lead to bias, my reflexive process allowed me to check these biases to the best of my ability and my “insider perspective” brought a sensitizing lens to this work that contributed to the trustworthiness of the research process and findings (Morse & Richards, 2013). From beginning to end, thought was given to the ways that research can be used to both document the experiences of disabled mothers, in their own words, and how to make sense of these experiences in the context of human rights monitoring, specifically, how to contextualize participants’ stories in the broader understanding of disability, human rights, and Canadian context. This research fits into a larger body of research addressing human rights, inclusion and full citizenship for people with disabilities. Chapter 5: Findings 106 Chapter 5: Findings Women’s Voices Introduction The research explored the experiences and perceptions of participants related to their sexual and reproductive health, and decision making through their lifespan. Moreover, this research was conducted within a disability human rights framework, and Article 23 of the CRPD (UN General Assembly, 2006) informed the analysis. The following questions guided my analysis: 1. From a human rights perspective, what are the experiences of disabled mothers in Canada? 2. How do these experiences impact their daily lives related to reproductive decisions, pregnancy/adoption, and raising children? 3. How do women experience access to information about reproductive decisions and choices across the lifespan? In this chapter, I use a life history trajectory to organize the findings with the following five key milestones: growing up/childhood; young adulthood/life before having children; pregnancy, prenatal experiences and adoption; labour, delivery, and postnatal experiences; and raising children. Within each of these key life course milestones, I created subsections that explore similar experiences between participants in that milestone. Across these life history milestones, as noted in the previous chapter, there were five reoccurring themes: embodiment, accessibility, relationships, oversurveillance, and trauma. Chapter 5: Findings 107 Growing Up: Sexual and Reproductive Education, Attitudes, and Messages The women in this study reported receiving both direct and indirect messages about their future as mothers during childhood, and through their reproductive and sexual years from peers, family members, and professionals. According to Article 23 of the CRPD (UN General Assembly, 2006), individuals with disabilities have a right to access age-appropriate information on sexual health, reproductive planning, and education. This section focuses on childhood and the experiences of participants growing up. Many of the participants do recall receiving some sort of sex education during their childhood, although several mentioned that they did not receive the typical education received by their peers because they were segregated and/or did not attend physical education classes where most sexual and reproductive health education occurred for their peers. None of the participants received sexual health and reproductive education that was adapted to their disability. The primary source of information for the participants was school. Lily reported that although she did attend the typical sexual health classes in elementary school, she did not attend any in high school: “That being said, I did not take PE from grade 9 onward. Because of medical [reasons]. So, any education that happened from grade 9 onward, I wasn’t privy to. Because I wasn’t in PE.” Frida had a similar experience: “I think in grade 10, they received [training in] PE too. But I skipped that entire year of PE.” And Iris, who was excluded from parts of the sexual health education at her school spoke about the impact that had on her later: I remember in grade 6 or so, we had the sex education. We sat down and you watch the video describing what will be happening when you reached puberty; all that kind of stuff. I do remember being taken aside with the rest of the other children who had Chapter 5: Findings 108 [Educational Assistants], and who had disabilities, and we were excluded from part of it. [ … ] They didn’t think we would understand. [ … ] When I hit puberty and growing up … it was quite a learning experience! Other women reported that the information they received was very general and not helpful. Pearl reported, “Yes. It was very what I would say, little. Just health. Women have children. Women give birth. It wasn’t around couples. It was just very based in health.” So, although most of the participants in this study reported that they did access some information that was similar to their peers, the manner in which information was taught, especially in high school, through the PE classes, resulted in the participants not receiving age-appropriate information. Further, for some, segregation from the general population meant that she did not have access to the same information as her peers. Accessibility to materials was also an issue for some participants, especially for participants who are blind or who had a learning disability. Rhea, who is blind, spoke about the lack of accessibility related to diagrams that were presented in classes: I remember learning [about] STDs [sexually transmissible diseases], periods. reproductive. Of course, nothing was ever accessible for me. If they showed stuff, diagrams, I never got any of that; in any subject, let alone that. So, all, to this day, all of my knowledge of the body, internal mechanisms, is all just pieced together in my head. Nobody ever showed me anything that I could [understand]. Rhea had ideas on how it could be done better: These days it’s easy. 3-D printers that you can print in different tactile forms. And even if I had someone that thought a little bit, and actually made, pieced together something that I could feel, like a uterus, or felt like a uterus. All they would’ve had to do. It’s not hard to find something that could feel like a uterus, and have me feel that. But nobody ever did that. [ … ] To me, it totally makes sense that if Chapter 5: Findings 109 you have a blind child, you would show them figurines. Objects that would feel like different things. But nobody ever did that. That’s why I’m so big on that now when I’m teaching people, blind people. [Laughter]. Although she was included in the classes with her peers, Rhea was frustrated and not able to understand the curriculum that was presented for students with vision. Kadence discussed how teachers within her school advocated so that she would have access to sexual education when her orthopædic department was going to withdraw her from sexual health classes: I know that the orthopædic department, so the people in charge of disabled people in grade 9 also wanted me to not take sex ed. But that same teacher, it was actually two teachers, were like, “No, no, she needs to be in sex ed with the other grade 9 students.” Having individuals advocating within the school system helped Kadence to be included, however, other women, like Ophelia, took matters into her own hands: I educated myself before doing anything like that. I was the last one being sexually active, but I had the most education. I made sure to take it upon myself to educate myself because the school didn’t do very much. Related to lack of education, several participants discussed not being prepared for menstruation. For example, Aster, who has a learning disability shared: It was pretty vague. They didn’t really talk about a whole lot. I think we were separated—girls from boys. I remember learning about my menstrual cycle, but having actually no idea what a period was. I thought, when I had my period, that was it. I was going to be bleeding for the rest of my life. Which really made me feel sad. Because I thought I would never be able to go swimming again. She felt that the information could have been delivered in a way that would have prepared her better. Throughout her interview she discussed not always Chapter 5: Findings 110 understanding information that was given to her and feeling embarrassed that she did not understand information the same way as her peers. Across the interviews, participants reflected on not feeling prepared for sex, consent, contraception, or pregnancy. Again, this indicates a real disconnect between assumptions made within the educational system and the lived experience of disabled women. Misinformation was reported by a few of the women, including being told they could not conceive, or that they could not use oral contraceptives. Further, there was no information about how to practically and physically adapt for intimacy. Not having factual information adapted to their disability lead to nervousness around intimacy, As Cassia reported: So, before I met my husband, I was really nervous to have sex. No one really talked it out with me on what I could do otherwise, or anything like that. So, that was also, that was the one thing they told me and didn’t go through the education. They just said, “You probably can’t be on birth control.” I think, the biggest thing was that nothing was detailed to my condition. No one sat down with me and said, because of your, I mean, other than that warning that I probably couldn’t have kids. I don’t think someone ever sat down with me and explained, like this is what can happen. This is what blah blah blah, like, this is what it takes for your body to carry. It was just me doing it on my own. For others, like Iris, misinformation and a lack of clear sexual and reproductive health information lead to unplanned pregnancies. Others, like Aster, reported sexual abuse both in childhood and with partners, and some women attributed the lack of education about healthy relationships and intimacy to these experiences. Aster reported: The idea, when I was younger, was, “Don’t get pregnant.” That was the big message that I got: “Don’t get pregnant. Don’t do this to us.” … I think there wasn’t ever an idea that I wasn’t going to get married, or that I wasn’t going to become a mother. I think they were Chapter 5: Findings 111 more concerned with the choices I was making when I was younger, because, I think due to the low self-esteem, I wasn’t picking good, healthy relationships. And at the same time, I never had any idea of what a good, healthy relationship was supposed to look line in terms of romance She went on to report having boyfriends who were physically abusive in high school, and she reported “sexual coercion” with these boyfriends. However, the message from her parents was not around abuse, but rather around not getting pregnant: “My parents didn’t really say much about [the abuse], the comment that I kept hearing was, ‘Don’t, just don’t get pregnant’. … I don’t think they ever realized how bad the relationship was”. She also discussed the impact of abuse on her and trauma, as well as the lack of education for a person living with a learning disability: Sex was really confusing. I was sexually abused at a very young age. So, I had really confusing ideas of what sexuality was. When I was about eight, I wanted it to stop so I told them. [ … ] I remember being very young and hearing these messages, and having these experiences. And then, when I was a teenager, and I started dating these really unhealthy relationships. I was trying to understand my own identity. I remember my dad getting a box of condoms and saying, “I know you had sex, so don’t get pregnant.” And at the time, I actually wasn’t having sex and trying to explain to him, “No, I wasn’t having sex.” And him saying, “Well if you’re not, then you are going to be having it soon. So here, take these and use them.” So that was like a lot of really mixed messages growing up, like what sexuality was. What sex was. And then with a learning disability, that wasn’t necessarily the problem. It was that broader social experience of not understanding relationships. And not having role models for me that could help explain and guide what relationships were. So, there was no talk about what a healthy relationship was, what an abusive relationship looked like. There was definitely no explanation of what sexual coercion was. I don’t even think we knew what that term was at that age. For participants, the social experience of relationships was a key part of their naivety around the connection between sex, relationships, consent, and fertility. Both Rhea and Selena discussed not experiencing typical crushes and dating in school. Rhea Chapter 5: Findings 112 eloquently shared her feelings when younger about not feeling desirable to her peers: Just going back, maybe one thing that I could say that was different when I was growing up, to do with, not so much having children, but having boyfriends … That was huge. I always felt, I was always the last one left out of groups. I was always the wallflower. My girlfriends had guys having crushes on them, but I didn’t. I experience those things all the time. Because of that, I’ve always suffered from feelings of exclusion. [ … ] I wasn’t thinking about [reproduction] at that age, but I was thinking about boys. I felt like why couldn’t they have a crush on me? [ … ] In connecting her future as a mother to having a boyfriend, Rhea shared: Because if you want to be a mom, I guess you can be a mom without having a boyfriend. But I was always wanting the whole thing. [Laughter]. I think I used to worry, honestly, … I knew I wanted to have kids, but the piece that I worried about, I knew I could have kids once I had a partner, but my biggest fear was, how am I ever going to find a man who wants to be with me. Nina also thought that she would not be able to have children; she connected children with marriage and thought her disability prevented her from getting married: I never thought that I could ever get married when I was a kid. Because I don’t have a ring finger. [Laughter] So, I used to ask my mom, “So, that’s your wedding ring, and it goes on the third finger of your hand, which I don’t have. How am I ever going to get married? If I don’t have a finger for the ring, mom?” I don’t even remember how she responded to that. She also received mixed messages from society. She never saw someone who looked like her in books and television and these messages impacted her ideas of what mothers look like and who mothers are. She described: I never thought that I was going to become a mom, growing up. … how was I going to do it if I wasn’t going to get married, because that seemed to be the only way that you did it. And nobody was going to marry me, I didn’t think. And you know, the impact of stories. What does feminine even look like. What does motherhood look like? And nobody ever looked like me. I never saw me in any of Chapter 5: Findings 113 the stories that I was ever told. I never saw me in any of the books. I’ve never seen myself in a TV show. You know? So, there never seem to be any kind of opening for me to be a mom. So, I never thought it was going to happen. It changed over time, I had plenty of boyfriends eventually. [Laughter]. This part of it’s going to work out. But I don’t know about being a mom. Further, as so many other women reported, her family actively discouraged her from thinking about a future as a mother: The messages, the unconscious messages that I got from media, and from people around me, they were quite clear to me. Right? That I didn’t fit into what a mother looked like. My mom, when I … eventually [talked to my mom] about potentially becoming a mom, she would say to me, and this was as an adult. She would say, “Are you sure you want to? It’s an awful lot of work. I don’t think you’re going to like it.” [Laughter]. For Rhea, Selena and a couple of other participants, desirability and dating started when they were connected to disability spaces. Although the CRPD (UN General Assembly, 2006) recommends against segregated spaces, multiple participants reported that these spaces were the first moments where they felt included, desirable, and at ease. Rhea shared: But it’s this idea that you get from school, and being with other [nondisabled] kids, well, the boys are not interested in me. And it wasn’t until I went to blind camp, when I was a teenager, that my life completely changed because all of a sudden, I was so popular. The boys liked me. And, I was like, oh my God, this is amazing! So, I would live for that one week. And my first boyfriend was blind. So, I could actually, then I could finally be normal. [ … ] It’s very empowering. People understanding. And you have inside jokes, that nobody else would get. ... It’s only once people get to know me really well, sighted people, then they get to laugh. [Laughter]. Selena also talked about the importance of these disability spaces for developing community: Chapter 5: Findings 114 Not until I got involved with blind sports when I was around 10 or 11. [ … ] It was really important. I went through the sports system when it was still segregated. So, I swam with other blind swimmers. I didn’t swim with sighted swimmers. You know? So, I felt it was very good socially. It was really quite lovely to be around people who are like me. And, that really worked for me. For these women, those spaces were places where they began to explore their sexuality. Aster, who has a learning disability summed up what many other participants experienced growing up: a lack of clear information, definitions, and candid conversations about sexuality: I think there were such mixed messages growing up about sex and sexuality. And, I don’t think we were really told much about sex. Particularly living in such a small town. So, what you were shown and what you experienced, and what was expected of you, was totally, it was like a kaleidoscope, you look inside and you turn the knob and it looks different every time. And, so, I think somebody without having good anchors, it got, it was very confusing. Overall, the majority of participants expressed that they wished they were given concrete, factual information about their bodies while growing up. Some participants discussed how a parent’s or caregiver’s preoccupation with safety, or “not getting pregnant,” without providing information to make informed decisions lead to a mistrust of reaching out to adults, and sometimes led to involvement in abusive and coercive relationships. All of the participants agreed that while they may have been vulnerable at times growing up, often this vulnerability stemmed from a lack of information. With respect to future ideas about mothering when growing up, a number of women discussed mixed messages around becoming a mother, and what choices they might have. Three general responses to whether they had considered Chapter 5: Findings 115 becoming a mother while growing up were apparent: ambivalence, desire, or disinterest. Five women indicated they did not want children, some quite vehemently. Nine responded that they had always desired to be a mother; and four were ambivalent about becoming mothers one day. Growing up, participants were split regarding their future reproductive choices. Several women felt that they always knew they would become mothers. Rhea, who has two sons, reflected: “Yes! I always wanted to be a mother. Always. I had dolls, I played with my dolls, they were my kids. I had birthdays and parties for them. [Laughter]. I was going to be a mother no matter what.” Similarly, Heather, a 39-year-old single woman who adopted her child, always wanted to be a mother: Yeah, I always wanted to be mother … I always joked about having, you know, I always wanted to have six kids … My mother was always frightened about it. [ … ] It was always something that I wanted to do … when I started working with kids with severe multiple disabilities, and finding out that there were so many of them in foster care. Then I started to talk about that I needed to adopt a kid in a wheelchair, because there are so many of them in foster care. To the point that when my parents built their house here in Ontario, my mom’s like: “Well we better make it wheelchair accessible ‘cuz chances are if a grandkid comes along they’re going to be in a wheelchair” [It] turned that my daughter is in a wheelchair and I adopted her. So that was always the plan. Even when I was little, not the wheelchair part, but of being a mom. Several women reported that they never had a plan to become a parent until they were older. Selena, who was an athlete, reflected on being ambivalent about becoming a mother until she was in her late 30s. And Beatrix, a mother of two, noted that she never thought about becoming a mother until she was in her late 20s: “I didn’t want to become a mother. Until I was probably about 28, and then I decided I Chapter 5: Findings 116 think I want to do that. But I never had any thought doing that at all growing up.” Others like Maia had a firm opinion that they should not be parents at all: No, I hated children. I actually hated everything about children. I did not think I was going to be a mother. I avoided children. I didn’t like children at all. I definitely didn’t think I’d be a mother. But, I love my kid! [Laughter]. Yeah, I think there are a lot of other really good reasons to not have kids. Often these ideas were initiated from messages by family and others growing up, messages that they would be “bad” or “incompetent” parents. For many of the participants, access to education similar to their peers was spotty, and no participant reported having access to information that was specific to their disability. For the participants who were included in parts of sexual and reproductive education but pulled or excluded from other parts of this education during their elementary and high school years, the result was an uneven awareness of their reproductive health and choices. Participants were mostly not informed about how their particular disability would affect their reproductive health and several participants reported receiving inaccurate information. And as seen above, women described how information was not accessible to them in formats appropriate for their disability. The next section moves into experiences of participants as young adults, before becoming parents. Adulthood: Sexual Health, Choice and Experiences Prior to Having a Family, including Planning for and Conceiving In this next section, I share the experience of participants in early adulthood, and before they became parents. This marks the second major life milestone in this study. Below, I share the women’s experiences in accessing appropriate birth control Chapter 5: Findings 117 as well as family planning information. This is a transition period for many of the women. They were candid with struggles they had along their journey to starting a family. Included in this section are some experiences around miscarriage and abortion. As well, I examine the experiences of participants who experienced reproductive and fertility issues. Access to information around sexual and reproductive health choices, and appropriate health care after high school did not improve for many participants, including information about birth control and access to reproductive and sexual health care. For example, Maia reported difficulty connecting with a local clinic to receive basic care. Maia lives with a physical disability related to cerebral palsy which sometimes causes her body to spasm: I remember, Planned Parenthood Clinic, and then I went to the one near my house. But I was asked not to go back there because I had a pap and I kicked the doctor, and they didn’t really know what to do. And then they were like, you have to find someplace else to go, and I was like, that’s not particularly helpful. I just sort of gave up on it for a long time. And then I found that there is an accessible exam table at [a different location in her city]. So, that is when I actually started getting, accessing sexual health services. For Maia, locating an accessible health centre was important in accessing birth control and later, support when she became pregnant. Some participants, like Nina joked about how her doctor was always interested in preventive measures but never in planning to have a child: My doctor, here in Canada, was, and remains quite interested in what I do for birth control. [Laughter]. From a kind of, I think from a very pragmatic way. I didn’t get that it was associated with my disability, or that there was an emphasis on it … She is also one of my best friend’s doctor, and she treated her the same way. So, it was just a very pragmatic, you know, “You need to be using something, right? What are you using? Let’s check in about it. Do Chapter 5: Findings 118 you want to [try] something else?” So, we had very frank conversations like that. But, no conversations about me considering being a parent at all. Which now that you mention it, is kind of strange. Nina felt that her primary physician focused a lot on preventing pregnancy and not enough on whether she might want to have a family. She later discovered that she had fertility issues and I discuss her experiences with fertility clinics later in this section. A number of the women reported being told they would not be able to get pregnant due to their disability without factual information as to why this would be the case. This misinformation resulted in a number of unplanned pregnancies. For example, Cassia, who has a complicated medical condition expressed this saying: [There was] a doctor who told me I couldn’t have kids, I then went on, I met my husband, and we started to try, just in case. And I ended up getting pregnant really fast. So, I think I was given misinformation, and I realize, you know, you look back on high school, I didn’t really ask her where she was getting her information, or anything like that. So, I think I was misled. I ended up being pregnant during my wedding. For Cassia, getting pregnant so quickly was distressing and she wished that instead of telling her, without medical information, that she couldn’t have children, she wished her physician had factual information to share. Cassia went on to discuss how physicians were afraid of her condition and discouraged her from having more children, again without explaining why. After I had my daughter, the doctor that was delivering, he basically threatened me and said: “You better not have any more kids.” And, like, as a joke. “You better not have any more kids. It’s too complicated.” So, when I looked for a second doctor, I looked for somebody else. And, she was okay but, she kind of made me feel like it was so complicated. Chapter 5: Findings 119 For Cassia, having a physician tell her not to have more children because her case was complicated was frustrating, and she ultimately sought out another physician. However, she reflected that it would be better if physicians better understood disabled bodies so that they would be capable of supporting “complicated” cases. A number of women reported having miscarriages and difficult pregnancies, reflecting that they considered there may be connections to their disabilities but, again, not having factual information to verify if this were true (see Table 4). Maia, who had an earlier miscarriage that resulted in complications that later impacted her ability to conceive a child without reproductive interventions, talked about her early experiences with birth control and trauma: I honestly … didn’t use contraception conscientiously, as a teen, for sure. So, I kind of made it through those years to be perfectly honest. And then, when I was in grad school, [my boyfriend] and I broke up. And I was with [a different person]. And I got pregnant, and miscarried. The trauma and difficulty she experienced with that pregnancy and her relationship at that time ultimately fueled her career aspirations. And that was sort of how I became a lawyer. Because [my boyfriend] and I got into a huge fight before I miscarried, where he was like, “You’re disabled and I’m not disabled. So, if you’re going to have this baby, I’m going to get a lawyer, and I’m going to take it away. Because I can. Because I’m able bodied. And you’re not.” And I looked into it, and that was how I got into child protection law. Afterward. It was a big shit show. And then, and there were a lot of complications. Maia discussed the abuse in that relationship and how once she was able to leave him, she decided to pursue a career in law to be able to support women who were experiencing custody issues related to their disability. Other women spoke about similar moments during their lives when they realized the degree to which they Chapter 5: Findings 120 experienced discrimination, with many pursuing law or social work degrees in order to challenge these systems of discrimination. Most of the women had experiences where others made assumptions about their ability to become a mother. This impacted their own thoughts about their reproductive options. Rhea discussed how she felt she was always pushing against the assumptions and has taken an educational position: In general, that happens all the time. Absolutely. They have this idea of what blind people can do, and mostly what we can’t do. [Laughter]. And then they go from there. It’s this constant battle to educate people. Or have them unlearn what they already think they know. It’s a constant battle. Rhea has built a career supporting blind individuals to better prepare them for facing discrimination. Her particular work often focuses on teaching blind parents what their rights are and supporting them with information and skills in order to circumvent the lack of knowledge in the able-bodied systems that are encountered. As with others who have decided to pursue advocacy after experiencing discrimination, Rhea wished she did not have the constant battle. Another consideration was access to abortion. For some women, this may be a choice they consider, for others, there was definitely a coercive element to abortion. Iris, who had a difficult time with her family, shared how her mother, in particular, made a lot of assumptions about her ability to engage in many typical activities and ultimately forced her to have an abortion: “When I first got pregnant, the first time, she forced me to have an abortion. When I was 19. Just because she thought so strongly that I couldn’t handle it. That I wouldn’t be a good mother.” She had three pregnancies that were terminated before she had her son. Iris felt that she Chapter 5: Findings 121 was given better information after her abortions than any other time: “I know that … after I had my abortions, they were really good at giving me a lot of information about what my options were... towards my own sexual protection. And family planning.” Relatedly, Pearl argued that having more information before becoming pregnant would have significantly impacted the trajectory of her life. Once pregnant, she decided she did not wish to have an abortion. I wasn’t given enough information, in a way. On one level. I already knew I wanted to have children. And then, when I became pregnant, I wasn’t wanting to terminate. Even [though] I was very young. I didn’t want to terminate. I just wanted no part of that. The father was, you know, definitely on board with us doing this. Albeit a bit earlier than what we wanted. And then, we waited until we got married, because we knew we wanted to have a second one. Pearl, who had a third child later in life, discussed how different it was to parent after having an education and leaving a difficult relationship. She wished more people with disabilities were informed that they can both live a full life and pursue education before having children and go on to have children when they are ready. Both Aster and Pearl discussed how they were not informed of potential alternative trajectories or life choices. Aster stressed how the only message she received was to not get pregnant before marriage, yet there was really not a lot of information about alternative life choices. She felt that her family focused on getting her through school and then married. A number of the participants shared that they felt pressured to become mothers once they were married. However, often these messages were mixed or confusing. Aster discussed how there was pressure from her family to follow a defined trajectory: Chapter 5: Findings 122 Yeah, I think I did. I don’t know if that was just the conditioning of being younger, thinking, oh, this is what I am supposed to do. I am supposed to grow up, fall in love, and get married. [ … ] And I think I did follow [my parents’] trajectory for me. Although she and her husband ultimately had children, her reflections on the choices around this trajectory were mixed: I think that what stuck with me growing up was “don’t get pregnant before you are ready.” And, I think in my head I was following that trajectory. “Okay, we are now married, we’ve been happily married for 3 or 2 years, or whatever it was before our first pregnancy. And now we are supposed to start trying.” And I wanted these things. And there was no discussion between my husband and I and there was no indication that things could look different. That we could travel the world and then maybe have children later on. I think that these were things that were ingrained in me. I wanted to become a mom because that was what I was supposed to be. Supposed to have kids now because that was what everyone else was doing. She shared that she felt her parents did not think she would be able to have a career due to her learning disability and therefore lined her up with one plan for her future: wait to get pregnant until your married, then get a house, then have a family. Pearl also discussed how she felt pressure to have her children young, and how her socioeconomic status, background, and blindness collided, resulting in an early pregnancy and marriage. She discussed how she wished someone had shared with her the choices she had in life: But I really wish there had been more conversations around, you know, you don’t have to do this in a hurry. There’s time. You can be set up in a good way. You can do this like everyone else. But it felt, it didn’t feel like that was an option. It didn’t feel like that. It felt like, “Oh my God I got pregnant, now what am I going to do.” Kind of thing. Having to deal with that. I wouldn’t have changed anything, but I think if it could’ve been more normalized for me: like, these are the options you have. You have the right and the choice wait until you’re 30. Wait until you have a home. Travel. None of that felt like it was doable. Chapter 5: Findings 123 She discussed how difficult it was to have a family so young, and how difficult it was to pursue higher education while raising her children. She also shared that she raised her own children to think about their life plan in a more open way than she was taught. The experiences of women prior to planning and conceiving their children demonstrate the importance of reproductive and sexual health education that is timely, accessible, and factual. The women who were excluded from this information growing up and again in their adult life, experienced challenges in making informed decisions. Similar to their experiences when younger, access to reproductive and sexual health information was uneven and often conflicting. Accessible formats and timely information was a problem for a number of the participants. Moreover, while a number of the women reported unplanned pregnancies relating to the lack of sexual health information, quite a few participants were able to connect to medical professionals who helped them to make informed decisions. The next section explores some of these experiences. Reproductive Technologies and Fertility Concerns For women who used alternative reproductive technologies and medical interventions to become pregnant, again, the information given to them and the attitudinal barriers experienced in clinics set up for these services were highlighted. Below, I go into a deeper analysis of five participants who experienced fertility issues, including four who accessed reproductive clinics to become pregnant. Chapter 5: Findings 124 Rhea struggled with getting pregnant, and after not being able to access information from her physician, she decided to try to learn about how fertility worked. Rhea discussed the difficulty she had in locating accessible information to help fill in educational gaps regarding reproductive challenges. When I was having trouble with my fertility, because I’m so determined, because I’m an academic, I was determined to figure out how I was going to get pregnant. [Laughter]. So, I wanted to find books on the subject. Back then, there wasn’t, well, they were starting to have e-books. But not so much. Rhea felt that she experienced barrier both in accessing information from medical professionals, and from libraries or other services where accessible books are found: So, it was hard for me to find subject matter that was on recorded cassette. Because, oh well, blind people are not going to want to know about fertility. God forbid. That’s what I’ve really found, with disabled, there isn’t, or at least there wasn’t very much accessible format books about sex, and fertility. It was always just this idea that blind people don’t need to know about that. Maybe we’ll write them a book about knitting, but they don’t need to know about sex. You know what I mean? I’ve always had that feeling. Finally, she was able to locate one book: So, I finally found one book, it was called Taking Charge of your Fertility. I must’ve rented it about 12 times. So, I had it all down, I had a talking thermometer. I did the whole thing. [Laughter]. To a tee. That’s probably how I ended up getting pregnant finally. Because I knew exactly how to do it! Although Rhea was incredibly resourceful, and as she noted, aware of alternative formats and how to use them, she was concerned that other mothers who are blind might not be this tenacious. She felt that there needs to be more information available in formats that are accessible for people who are blind. Chapter 5: Findings 125 Four of the participants reported that they used fertility clinics and reproductive technologies of some sort in order to conceive at least one of their pregnancies: Selena, Maia, Nina and Kadence. Three of the women had male partners, and one went through the process as a single parent. Selena went through the IVF procedure twice, discussed how important it was to have her husband with her throughout the process, that in particular, his support was critical to her ability to navigate the systems: “For me that was my husband. Again, it never occurred to us that we wouldn’t just make it work. We were almost naïve about how tough it could get. Or, what I couldn’t do.” Further, they were able to afford going to a private clinic for the procedures. She was in her late 30s when she had the procedures, and delivered her second born at the age of 40. As with other mothers, medical professionals were more concerned with her age and risk than with disability and risk: My second one was considered high risk because I was over 40. … There was nothing really medically different. With my first, I was 38, but all of a sudden, I was [barely a week] over 40. [ … ] They told me my uterus was old. I don’t remember that term [geriatric], but I do remember being told my uterus is old. She and her partner were offered genetic testing if they wished, and although her disability is caused by albinism, which is hereditary, ultimately, they decided not to have genetic testing. It caused me to pause. That I might have a child with a disability. It wasn’t something that I consciously had to become okay with. Which was amazing that I had to go through that personal thought process. Am I prepared to have a child who also can’t see? And it was a given for me, at the beginning. You know? Yes, was the ultimate answer. But it was more thinking than I would’ve thought that I would’ve had to have done. Mainly just knowing, you know, Chapter 5: Findings 126 the shit you go through. And do I want to consciously choose that for somebody? Or do you want their path to be easier? Although she did disclose her disability in the above instance, Selena shared that she sometimes chose not to disclose her vision loss during appointments so as to avoid circumstantial discrimination, however, she explained choosing not to disclose meant that all the written materials she was given were not accessible for her, and she relied on her sighted husband to read the information to her. Several other mothers, including both mothers who adopted (Lily and Heather), and the two mothers who identified as being autistic (Gail and Frida) commented on the experience of contemplating having a child with a disability. Ultimately, the majority of participants were not concerned with this. In fact, many of the women do have children with disabilities, not always the same as their own diagnosis, and both mothers who adopted children, chose to adopt children with disabilities. Several women reported how finding a doctor who was an ally was critical during this stage of their journey—trying to get pregnant. Maia, who previously experienced a traumatic miscarriage, discussed how she and her partner needed to have support in becoming pregnant due to complications with the miscarriage; finding a good doctor was paramount: And then, [my child’s father] and I were really lucky with IVF because we found a good doctor. He wasn’t too horrible, I wouldn’t call him disability friendly, but he wasn’t disability unfriendly. Which I think is, in my experience, the most that you can expect. And then we were lucky, because we ended up with an embryo and we implanted it the first time, and got pregnant. Which is really not the norm. So, we were super lucky. I have to say my whole reproductive life course has been thematically speckled with luck. In many different ways. [Laughter]. Chapter 5: Findings 127 Maia discussed how the embodied experience of disability made for some painful experiences, especially when doctors made assumptions: Well, I have to say that for the IVF process … Once it got started. I do remember, they were pretty good, at the IVF clinic; it was accessible. But then, when they were doing the egg extraction, I remember my doctor telling the other [doctor] … that I had spasticity, that sometimes my legs move, so it doesn’t necessarily mean that I’m in pain. It’s just spastic reaction. Which is true. But, egg extraction hurts like a motherfucker. And, when they did it, it hurt, and I moved because it hurt, and they were like, “Oh, don’t worry, she has CP [cerebral palsy].” And I burst out laughing. [Laughter]. That’s what I remember [about] my disability experience at the IVF clinic. Again, this illustrates the importance of that intersection of knowledge, both of the medical condition or disability, and the medical experience of pregnancy. Nina was in her early forties when she had her son. She and her husband used a fertility clinic as well. She reflected on her experience of arriving early in the morning for her procedures: I have to say, it was a very humbling experience. To sit in those waiting rooms with all of the moms coming in in the morning to do cycle monitoring. Cycle monitoring is that you come in, and you have blood tests, sometimes you have an internal ultrasound, so they can figure out when you’re ovulating and time things around it. And I did that for four months in a row. Before I got pregnant. Everybody’s there. It’s 6:30 in the morning. Everybody’s tired. And everybody’s in the same boat. And it’s everybody. It’s all classes. It’s all shapes. It’s all sizes. It’s all colours. It’s all languages. It’s everybody. So, it was a very humbling experience. To realize that this is a universal difficulty. Nobody ever gave me any negative messages about being a mom there. They were great. [ … ] they were very professional folks. Her reflection on the diversity of people who struggle with fertility was similar to the other three who accessed IVF. Her experience later was not as positive: “It was less professional once I was actually referred to the prenatal care. Once I was pregnant, Chapter 5: Findings 128 it seemed like the professionalism standard went down. But [the team before] were great. There were no questions about my disability.” Nina had never had a clear explanation as to what caused her limb difference, and as with other mothers, there is a question of whether her condition is genetic or not, which she discussed later in her interview, once she became pregnant. Kadence, the only single mother in my study who used a fertility clinic to become pregnant had a very different experience, in part because she was also seeking access to sperm, not just support in fertilizing her eggs. Her journey to pregnancy began with having a supportive regular physician: “My family doctor’s amazing, I don’t know if I would’ve been able to get pregnant if I didn’t have this particular doctor. Or that particular health team.” Her experience reinforces the importance of having strong allies and a positive relationship with professionals. That said, as with other women, she reported that there were unsubstantiated assumptions before she even started the process, and further assumptions were made regarding what would be typical for an able-bodied woman: One of the first things that I feel like three people said, “What if there are fertility problems?” [ … ] And then I was like, if you have any other evidence that you think that I can’t get pregnant, or that it would take an extremely long time, that’s what they said, that [it] would take an extremely long time. … I gave them ample opportunity to show me why it was I would not be able to [get pregnant]. Or that it would be really hard. [ … ] There was some doubt whether I would be able to get pregnant. But it was never medically confirmed. Her experience of the process was similar to the others, however, some challenges she encountered were related to her regular physician being on leave; ultimately, she went with another doctor. Chapter 5: Findings 129 So, I just saw this doctor that I had only seen one other time before, I was like, “I want to get pregnant. What are some things I could be or should be doing?” And then I was like, “I’m asking you about this specifically because I want to speed things up.” I think those are the exact words I used. I wanted access to sperm. I think the family doctor that I saw, I feel like she was mortified. But at the same time, she knew that she just had to fill out referral forms. [Laughter]. She felt that this physician was willing to give her a referral but she also felt like the physician did not expect to have a single woman in a wheelchair to make the request. Although the physician writing the referral was not great, her next encounter was encouraging: I went to our pre-pregnancy clinic where my hospital team are based … I saw this doctor at [the hospital] that floored me. I was so excited after that appointment. He asked about my health, my entire health history. Which takes a while. He was just like, “all right, I don’t see any red flags.” And I was like, “define red flags.” [Laughter] … I was just glad from his perspective getting pregnant wouldn’t be medically challenging. [ … ] In terms of a pre-pregnancy clinic, he was amazing. [ … ] Also, his nurse and social worker were great. I think the reason I see it that way, still view it that way, even as were talking about it, I feel happy about it because I expected the exact opposite. Despite later challenges, for Kadence, this early positive experience set the tone for her pregnancy experience, as her next experiences were not always as supportive. I know that the doctor at the fertility clinic got my file by accident. She literally, when I went in to see her, she looked very surprised, and she looked at my file, [ … ] she said, “Are you sure you’re in the right place?” Something like that. [Laughter]. And then I just, I wanted the situation to work out, so I ignored, I ignored it for a while. That might not be the doctor for me. Or the clinic for me. Several times during the interview Kadence discussed not acknowledging statements or comments that she felt were discriminatory, for her this was a strategy to meeting her goals. During the situation, she would ignore discrimination or Chapter 5: Findings 130 inappropriate comments, and later, if she felt it was necessary, she might report the situation. And then, it turned out that the, I feel like my getting access to sperm hinged on a couple of things. So, one of which I recognize early, and right away realized it was disability discrimination for sure. And I wrote about it. I wrote a letter to the clinic. Navigating her responses to situations became for Kadence a critical component of successfully meeting her goal of becoming pregnant. As with other women, Kadence experienced assumptions about disability and genetics. In particular, assumptions about potential conditions that had nothing to do with her own disability. Unlike the women who had partners, she was not able to easily dismiss these tests. They wanted me to get tested for fragile X. And the doctor that I had been referred to [was] insistent [about] those tests So, there was that. And I had to wait for that test to come back. And I couldn’t be inseminated until all that had happened. Because Kadence felt the test was being set up as a roadblock, and not based on her actual disability, she decided to push back about waiting for the tests. She also refused to pay for the tests because she felt the clinic was being discriminatory, and she would have proceeded with the insemination, even if the test came back positive: … my strategy for those things, for the longest time has always been, I’m always agreeable, always say okay at the outset. And then I go home and think about it. [ … ] And I also did say, “Even if I have fragile X, I still want to have a family.” Which, that was not greeted favourably, of course. And I was not shocked about that. She also faced further questions and requirements to have the procedure done: Because the other thing, … the fertility clinic wanted a letter specifically saying that [my disability] was not genetic. And I was like, oh, I don’t know if I can get a letter that states that, because for me, that’s never been, I was diagnosed later in life. And then, she Chapter 5: Findings 131 was like, “I just need some kind of clearance letter.” And then I went to see [the other physician], and I told her about that experience, and she wrote the letter and it was essentially one line saying it was not, contraindicated to get pregnant. Again, it was the support of the physician that got Kadence access to the clinic and to sperm. But Kadence shared how frustrating it was to jump through hurdles that are likely not asked of nondisabled women seeking access to sperm. She also reflected that some of the resistance could be related to being both disabled and single. Despite her resolve to be agreeable, Kadence did push back on the request: she agreed to have the tests but refused to pay for them. She also wrote and informed the clinic that it was not a personal concern to her. She said, “At the end of the day I got the blood work, I didn’t pay for it, and I don’t have fragile X.” And despite the earlier assertion that she would need this test before she could be inseminated, she did not have to wait. There was one other instance where she experienced difficulty during the process of becoming pregnant. Once she had the go ahead to be inseminated, Kadence arrived to have the procedure completed, and the scheduled physician refused to do it. Eventually, another physician was located who completed the procedure on the day it was planned, but Kadence shared that it was extremely stressful to have that experience after already navigating so many hurtles. Finally, part of her experience, both because she was single and because she was seeking access to sperm, included a social work assessment, which she reported as very positive. The social worker was “fantastic.” During that experience, she was assessed as to whether she was a good candidate for becoming a mother, Chapter 5: Findings 132 and she was advised on appropriate sperm choice: for example, choosing someone who has similar characteristics as the mother. Overall, women who sought out services from fertility clinics seemed to be able to access these services, although there were definitely challenges, and some clearly discriminatory practices. There were several factors affecting these experiences: the ability to “pass” as abled or not, the access to private clinic or a publicly funded clinic, the age of the individual at the time of her pregnancy, and the relationship status, especially for women with able-bodied partners. Sometimes educational level was also a factor, in particular, women who have an education in social work or law felt more confident in asserting their legal rights, and when necessary, ensuring that they created a clear plan to demonstrate their “ability” to parent effectively. Further, women encountered physicians and professionals who did not seem to know basic things about disabilities: for example, ideas that nongenetic conditions are hereditary. Pregnancy and Prenatal Experiences This next section discusses the experiences of participants of pregnancy. Included are the general experiences of participants, including examples of how some of the women navigated access to information. Next, I discuss some of the experiences around access to prenatal or childbirth classes. I then discuss what women shared about the embodied experience of being pregnant with a disability. And finally, I discuss some of the participants’ experiences with midwives and doulas. Chapter 5: Findings 133 A few of the women shared stories about how little they knew about their bodies during pregnancy, labour and delivery, as well as postpartum experiences of the body. For other women, conducting research and preparing themselves ahead of delivery was critical to filling in the gaps of pregnancy. Overall, most women reported spending a large part of their pregnancy experiences in educating themselves and their medical teams on how to accommodate their disability during pregnancy, underscoring the theme of accessibility. Pearl, who has three children expressed her frustration: I mean … why is it that we always have to be the ones to creatively solve the problem when other folks giving birth, or birthing have other options available to them. We don’t have that. And if we do, it’s because we’ve created it, and gone to great lengths to get it. It isn’t just an easy fix. Participants discussed experiencing many barriers during their pregnancies including lack of access to information that was in a format they could use; physical inaccessibility during checkups with their medical team; and attitudinal barriers. A number of participants discussed challenges in accessing classes to prepare for childbirth. As well, women talked about the difficulties they had communicating their disability needs and accommodations to the obstetric teams that were supporting their births. As with all the other sections of this chapter, relationships both professional and personal played an important role in better outcomes. Access to Childbirth Classes Prenatal or childbirth classes was one area where women experienced multiple levels of barriers as discussed above. Interestingly, women experienced these barriers differently depending on who was accompanying them to the classes. Chapter 5: Findings 134 Pearl, who really wanted to attend prenatal classes talked about not having the information that was shared with other mothers in a format that she could access. During her last pregnancy, she was able to access some information through e-books and handouts that a friend had received during their prenatal classes: For my last child, for the first time ever, I actually read that, What to Expect When You’re Expecting. Just for fun because a friend of mine in [in another city] actually had it on e-book. And he actually had handouts from his prenatal class, for his wife. And so, we had it, so I actually got to see some of the other handouts, and it was really nice. Pearl experienced further attitudinal barriers when she tried to attend prenatal classes with her partner, who was also blind: “The first time that [the healthcare provider] came into my class, she said to my husband and I, who is also blind … , husband of the time, ‘Oh, I don’t know how I’m going to manage you people’.” Pearl, who had a guide dog when she was pregnant, shared that at least no one discriminated against her service animal during appointments and classes. She did, however, find that the nurses at birth classes were not aware of particular needs of a disabled woman during labour: “The nurses weren’t very disability aware.” Rhea, who is also blind, discussed how she really wanted to attend birthing classes but did not because her partner did not want to attend. She was worried about experiencing attitudinal barriers and discrimination if she were to attend alone: I wanted to do [to childbirth classes] so badly. I had always looked forward to that. But unfortunately, I had a husband who had some social phobias, and he wouldn’t go with me. So, I never went. And partly, it was the stigma of … being blind and there by myself. Chapter 5: Findings 135 For Rhea, missing out on this experience still upsets her: “I always resented that. Or felt like I really missed out. Because I didn’t have that experience.” Maia, who uses a wheelchair and also has a support worker that accompanied her to appointments, discussed how having a support worker accompany her created a barrier where other mothers did not approach her. She also believed that she was not approached due to her chair: When you have your worker with you, it’s really fucking hard to make mom friends because, I remember when my partner and I went to the prenatal classes, there was actually one mom that would talk to every other mom there, [but] would not talk to me. I think it was because I was in a chair. That was the only difference between me and the other moms. Gail signed up for prenatal classes but when attending, often the elevator did not work, and she was unable to participate, or she had to rely on her partner to assist her: I missed most of them because the elevator was broken [at the place for the classes were held]. And they did let me know, and I showed up one day, and my co-parenting partner had to help me up the stairs. Overall, the women who discussed prenatal classes, did not have a positive experience. As one of the rites of passage related to pregnancy, the disappointment in these experiences was sometimes emotional for the women to recall. Midwives and Doulas For some of the women, there was never an option to choose an alternative type of birthing situation. Selena, as an older person, felt that going with a full medical experience was the best choice for her, and as she had complications with her first delivery, she opted for a medical birth on her second pregnancy. However, Chapter 5: Findings 136 other mothers felt they missed out on some of the choices that nondisabled women experience. For example, Aster chose to have a midwife for her second pregnancy after having a negative and traumatic experience during her first pregnancy. [With my first birth it] was in the medical hospital, very much the medical setting. And very much that authoritarian expert … and you will just lie there … I know with that time, there was definitely no explanation, no consideration that I might learn differently, and maybe having the same consistent person would be easier for me. Or having diagrams or having someone draw or write things down that they are asking me to do was never considered. [ … ] And then being a trauma survivor on top of that, at that time I don’t quite understand how my mental health was impacting me but I know there were parts of the process that I always hated. On top of having a learning disability, Aster was also a trauma survivor and struggled with the medical authoritarian style of the physicians: I know that when I first started seeing that doctor, I had requested no male physicians. And they knew that I was a sexual abuse survivor. And that was ignored. So, when the first time I had gone in for an internal exam, and I had asked, can I, I had made the request can please have a female physician, and I went in and it was a male. So, being that he was the authority and I was not, I allowed him to do the internal exam. And then afterwards, I had said, “can I please, next time have a female?” I had requested a female. Can I have a female? And he was like, “It’s going to take six months because there are no female physicians on this rotation.” Aster later learned that her sister-in-law had used a midwife, and she chose to use that option for her subsequent pregnancy, after noting that they never did internal exams: And she was like, do you want one? And I said no. (laughter) I don’t want one. I am perfectly happy. I love not having them. And so, she explained that you don’t need them. There will be times when you will, but we are going to respect you and if you feel like you are not ready for it, then we are not going to do that. So, that was a really huge difference. Chapter 5: Findings 137 However, she continued to struggle in asking for accommodations and reflected on difficulties she had because she did not disclose her disability: But again, I think, not being able to advocate for myself, there was a lot of paperwork to fill out, and having a learning disability, I didn’t even consider saying to them, look, I have a learning disability and I need a little help with the paperwork. So, it’s, I think that again comes up, learning that you are supposed to look normal. Despite some reflection on times when she did not fill out paperwork or ask for supports, she noted, “I think I felt like I had more control with my second pregnancy than with my first. And I was able to at least exercise some rights.” Similarly, Eleanor chose to access a doula and a midwife during her third pregnancy. Kadence was able to access 15 hours per week with a doula during and immediately after her pregnancy, and this support was invaluable to her. However, both Cassia and Pearl reflected that they wished they had been able to afford and access a doula or midwife during their pregnancy as they felt they might have had a more positive experience. The majority of women who opted for midwives or doulas had a positive experience. Only one mother reported having a negative experience with her midwife team. Frida, who is autistic explained: Definitely midwives. I really was not happy with them. I had huge amounts of agonizing, agonizing, excruciating pelvic pain. There was no, I would say obstetric discernible reason for it. When I was very, I don’t want to say dramatic, but I was high needs. I was a high needs pregnancy. There was just a lot of frustration, and I would have to say, a lot of frustration. I had hyperemesis as well. I know one midwife in particular tried to, was quite insistent that I must have some type of eating disorder. And, I’m like, no, never had this. They thought it must be psychiatric. A lot of the things. A lot of the things that happened with me, I got the impression that people just assumed that I’m hysterical. That’s probably, I don’t do super great when I’m in pain and things like that happen. Anyways, my Chapter 5: Findings 138 distressed behaviours tend to kick in. And I make noise, or rock. Stuff like that. Unfortunately, it did not go over very well with the midwives. [Laughter]. Frida expressed her frustration with midwives in relation to her autism. Throughout her interview, she shared encounters with professionals who do not understand autism, and who she felt, did not believe her accommodation requests were valid. Although some participants, such as Selena and Quinn felt their medical situation was too complicated to have home births or midwives, others were happy with being able to access alternatives to traditional medical births. Overall these mothers felt that their decisions were respected. Accessibility and the Embodied Experience of Pregnancy and Disability This next section discusses the embodied or physical experiences of pregnancy from participants’ perspectives. Many of the participants shared how disconnected their experiences of pregnancy were from their disability medical needs: for many, their disability was treated as “other,” as not relevant to their pregnancy, labour, and birth. Likewise, their disability and health needs were treated separately from their pregnancy. Beatrix, who has spina bifida, explained that despite asking for information, she did receive anything specific: I only remember feeling like I did not get any information about how my disability would affect my pregnancy. I got nothing on that. I asked my doctor once I was already pregnant, and she had no idea. She told me about a patient she had had who had a leg amputation. And I was like, that’s not the same. To be fair to her, that’s probably the only physically disabled patient that she’d had. I just felt like I didn’t get enough. Chapter 5: Findings 139 She went on to explain: “I really went around and looked for information and got books. And went online. To try to get information.” However, she was only able to access general books on pregnancy and disability. Several participants who use wheelchairs or walkers, or those who wear braces, including Maia, Kadence, and Gail discussed how difficult it was to accommodate their changing bodies. Women with mobility disabilities shared how the experience of pregnancy impacted their daily activities, that is, the extra weight, in particular the way that weight is distributed during pregnancy, and the manner in which the body changes and adapts to a growing fœtus. Mobility devices are designed to fit an individual’s body, and the changes that occur to the body over the 40 weeks of pregnancy had a profound impact on accessibility, and none of the women had access to temporary equipment that would accommodate the difference in weight. Maia discussed some of the challenges she had. They now are hilarious to her, but during her pregnancy, she had real fears about falling. Talking about using either her walker or her wheelchair, she recalls: It was awful. You don’t steer it in the same way. I remember during my pregnancy I was so scared, [my son’s father] had to hold my hand on the curb cuts going to the store. It felt so steep. But I was scared to just go down. I thought I was going to tip over. [Laughter]. He was like, it is safe, you can go. And I was like, no, no, you have to hold my hand. [Laughter]. I was totally convinced that if I went down this one particular curb cut, my entire chair was going to tip over, and I was going to smoosh the baby. And that they would have to pick me up. There was no convincing me otherwise [Laughter]. It was not happening. It felt like going the edge of a roller coaster. You know? And there was nothing I could do. Maia discussed how these fears and a lack of support in how to adapt during pregnancy was frustrating. She was able to rely on her partner and her support Chapter 5: Findings 140 worker but she also felt that there should have been resources to access to help adapt her equipment. Gail, who uses braces explained the challenges she experienced: I needed special types of considerations because of the disabilities. I have mobility assistance and such. A lot of it stopped fitting. All my braces stopped fitting; things like that. Mobility assistance was what I needed, to have things set up where I can do all her changing sitting down if I need to, or at the right height for my injuries … It’s a lot of extra money. And none of the stuff is covered. For Gail, it was not just the lack of access to adaptive devices during her pregnancy, but also the added financial cost, and the cost to her body to not have appropriate braces during her pregnancy. Quite a few women reported being concerned with the gaps in knowledge of various professionals they encountered in their pregnancy to prepare for labour and delivery. For example, the lack of knowledge of anesthetists related to spina bifida, paralysis, autism was noted by multiple women. A few of the mothers reported that physicians had no knowledge of their disability. Maia discussed a very concerning consultation she had with a potential anesthesiologist: Oh, the anesthesiologist, she said something awful. Then I got a new anesthesiologist just after that. She googled cerebral palsy while I was there. In the room. She talked about how she thought it might be hereditary. And I was really freaked out. And then I talked to [the doctor], and I end up getting to talk to the head of anaestheology. So, that wasn’t a really good experience, … so, I had that first really shitty experience, with that woman who googled CP while I was there. And didn’t seem to know what she was doing. Then I met with the head of the anaesthesiology department. So, that’s even better. Ultimately, although she had these early consultations, she was still not accommodated during the procedure. And due to the spasms, she experiences Chapter 5: Findings 141 related to her disability, she felt fortunate that she did not have any injuries related to the procedure. Nina experienced a number of distressing experiences related to her disability when she was pregnant. She explained what happened during one of her appointments: I was probably halfway into my pregnancy, and I was going in for the traditional tests. So, you go in, you and a bottle, and then you have the dipstick test, and then you wait and you go and see the doctor. They measure you. They take your weight, take your blood pressure. And my husband was so excited about us being pregnant that he came to all of these appointments with me. So, we went in together, and I was sitting on the table, with my big belly, in the gown. And it’s a teaching hospital that I went to, so as part of the University health network. So, there was a resident in with this doctor. And the doctor said, “This woman was born with a deformity, and she pulled my sleeve up, as you can see here, but we think she’s going to be a great mom anyway.” At first, Nina was in shock over what had just occurred: “And I was like, what just happened! What happened? So, I felt very uncomfortable, and my husband was very uncomfortable.” However, she found her voice and was able to confront the doctor: And I actually said to her, “Excuse me, I really don’t think that that was appropriate, how that was managed. I’m sitting right here, to use terminology that I don’t feel comfortable with, and you’re talking about me as though I’m not here. So, I have a real problem with this.” And she said, “Oh, I’m sorry I didn’t mean it like that, I just meant to show how great you’re doing. And that you’re going to do a wonderful job. There’s nothing wrong with you. You’re doing just fine.” It was very, it was awful. And I had to have a conversation with her about it, and say that, you just can’t do that. It’s wrong on so many levels. Encountering this medicalization of the body, without an awareness of the person, was distressing for Nina. Despite her experience working as an advocate for Chapter 5: Findings 142 disability rights, Nina was still taken aback when this incident occurred, and discussed her concern that this sort of situation might occur for others who do not have a supportive partner, and decades of experience as an advocate. Overall, the situation made her feel vulnerable in a way she does not typically experience. Maia also shared how she felt more disabled than at any other time in her life when she was pregnant, especially as she experienced the instability of her body no longer fitting her mobility devices, and her encounters with medical situations that were not adapted to a pregnant disabled person. Kadence also felt that there were many appointments that focused solely on her ability to give birth to a child: “There’s quite a few appointments, and a lot of demands on my time I feel when I was pregnant in terms of, appointments where they ask, ‘Can I push? Can I push a baby out?’” Much like some of the other mothers in the study, she reached a point where she had had enough: And this came to a head. I feel like I was eight months pregnant at the time, anesthesiology did not want me, that was a learning curve for me, and maybe I was also a jerk about it too. I was pissed off. I had gone through all the processes, a lot of the people that were involved in my care were men, a lot of the people involved in my care were men. I was involved a lot with the [hospital] pregnancy team, and I think that they have more men on their team than women. By a long shot. But then the anesthetist was obviously like, very well-trained in her field, has a lot of letters behind her name … and I was like, wow, of all things I wish she wasn’t so, she was actually afraid. That’s how I read it. She was afraid of me trying to birth a baby. Ultimately, her main physician took charge of the situation: I did a few appointments with the anesthetist, it went back and forth for a little while, at the end of the day he said, he’s like, “I’m the OB, so I’m in charge of pushing. [Laughter]. So, if somebody says something to you, you can tell them I’m in charge of everything.” Chapter 5: Findings 143 For Kadence, her main physician, who is responsible for supporting her during labour was able to assert control over the situation, but not until after numerous appointments with the anesthetist. She felt like she could not decline these extra visits, despite it being difficult to navigate, and she was especially worried that the person in charge of administering medication was afraid of a disabled woman giving birth. Beatrix and Maia also discussed that medical professionals did not seem to understand their disability and were concerned they would be unable to push, or that their body would not progress with labour. As with earlier sections of this chapter, these assertions occurred without data to back why there was concern about their body’s ability to labour. While some mothers took a stand, an equal number of mothers discussed not feeling like they could stand up to their medical team. Aster explained: My first son was with a doctor. It was pretty standard stuff. I didn’t use a midwife, I went with the medical field. I would never ask them questions because they were the authority figure and I was, I was the patient. Again, I was a person who didn’t have the intelligence to know or to be able to advocate for what I needed. Aster attributed her inability to question her physician on her disability. However, as was demonstrated above, women who did not have a learning disability, and in many cases, had multiple degrees, hesitated questioning medical professionals, even when they believed the physician did not understand how to accommodate their disability. Further with respect to embodiment, several mothers discussed how pregnancy either made them feel further “defective” or empowered and in control of Chapter 5: Findings 144 their body, depending on how the pregnancy was going. Particularly when there were miscarriages or complications, women reflected on the painful feelings around these challenges. For example, Aster reflected: I had one miscarriage and that was very painful and very confusing because nobody really explained what that process was. … I was about 25. … I had this pregnancy and then it was gone. And that was pretty painful, and again, I saw this as another example of how my body was defective. And not doing what it was supposed to do. After the miscarriage, Aster was able to have two successful pregnancies, and her feelings about her body completely changed. Instead of feeling further “defective,” she talked about how affirming the pregnancy was: My children were both wanted. We both worked hard … to get where we were. So, I think, I mean just, especially with my first son, just the realization that I was pregnant, I was growing this thing in my belly was very affirming. For me. I loved my pregnancy. And I loved, my body was doing what it was supposed to do. Right? And I think it was probably one of the first times, in myself, so that was, and having this little guy in my hands afterwards was just the most phenomenal feeling. I bonded very closely with him. Very quickly. Which is always wanted. Quinn, who had not been able to get pregnant and had a surprise pregnancy later in life, explained how she felt: “I loved being pregnant. [Laughter]. I felt the most normal that I have ever felt. [Although] I did have tremendous sickness.” While these aforementioned examples of healthcare relationships and experiences point to issues of accessibility and the importance of positive relationships, mothers who have vision disabilities and learning disabilities specifically underscored how access to information and filling out forms was a barrier through their pregnancy. Selena explained: I’ve only been pregnant with a disability, so I’m trying to figure out. For me, it’s about a lot of the barriers I faced, was access to Chapter 5: Findings 145 information. Reading things. Someone handing you a pamphlet. Or, you know what I mean? And then you say, I can’t read that. Selena mitigated this with support from her partner: “He automatically stepped in and accommodated me. We went through that together.” However, not all women were able to rely on friends or families to intervene. Aster explained: There was a lot of paperwork to fill out, and having a learning disability, I didn’t even consider saying to them, “Look, I have a learning disability and I need a little help with the paperwork.” So, I think that again comes up, learning that you are supposed to look normal. And normal people don’t ask these questions. Normal people don’t ask for help to fill out a form. She went on to explain how she wished she had been accommodated: “Being asked. About, you know, what works best for me … And I think giving me time to answer that question. I think knowing that somebody asking how is information best given to you.” Similarly, Pearl, who is blind discussed missing out on some typical experiences of pregnancy. Pearl explained: Even trying to put together a bit of a baby book for the kids to have when they’re older, … like, I think I have my youngest’s ultrasound somewhere, from my youngest son. But I don’t have the others’ information. Really. So, even that kind of stuff, the quote unquote normal stuff, the stereotypical normal, that is, heterosexual normal, have baby books. Even same-sex couples, they have baby books. They have all their ultrasounds and everything else. And, I don’t ever feel that was an option entirely. Maybe part of it is that I’m not a techie person per se, but, it would’ve really been nice for someone to, you know, “If you have a baby book, and you bring it in, we will put it in for you … We don’t have these reports in a Word document that we can email you … but is there a way that we can make this, record that information and you can have it?” As can be expected, evidence from in this study indicates women had diverse experiences with their pregnancies. It is clear that accommodations and accessibility Chapter 5: Findings 146 for pregnant disabled women need to improve. Further, repeatedly throughout the interviews, the relationships that women had with partners, friends, family members, and professionals impacted their experiences of pregnancy. Some women expressed frustration with having to always be the ones to come up with solutions to access issues (e.g., Pearl, Rhea, Nina). Sometimes medical and professional concerns were mitigated by presenting as “abled” as possible (e.g., Selena), by creating extensive plans to prove one’s ability (e.g., Maia, Kadence), or having able-bodied supports present (e.g., partners, doulas, or support workers), partners, and friends present during appointments. Finally, there was a real sadness in women’s voices as they recounted not being accommodated, not experiencing pregnancy in a typical way, and in the further trauma that so many reported because of discriminatory treatment. Surveillance was a theme cutting across the women’s narratives about their pregnancy experiences. In fact, some of mothers explicitly discussed feeling like they were being watched closely throughout their pregnancies. Gail explained how her fears and the surveillance impacted her during pregnancy: Because honestly, I was scared, when I was pregnant, everything I did, would be seen as a risk and they could take my baby. I did a lot of research into disability, and reproductive rights. And autistic parenting. That’s where I found my tribe. That’s what we do. We going to secret groups all the time because nothing is safe and accessible. In real life for us. Especially when there is autism and physical disabilities. Iris also felt nervous when attending appointments during pregnancy: There were a few times when I was at the maternity clinic at the hospital. They had rotating doctors. You didn’t see the same doctor. I had different reactions from each doctor. As they knew about my Chapter 5: Findings 147 different ailments. And quite a few times, I was looked at as a risk for my son … Just because of my difficulties. Further, Maia explained that having support and resources is important, but that sometimes constantly having outsiders in your space is challenging contributing to a sense of being surveilled: My whole pregnancy and my whole parenting experience has been, I feel like I’m perpetually watched. It’s really great to have nurture care assistance, but it means that you have support workers here, all the fucking time. When [my son] was first born, we had 20 hours of nurture care assistance. Which seems like it’s really awesome except that means 20 hours of somebody in your space, and in your face. And watching how you parent. I feel like my whole pregnancy, and my whole experience of parenting has been surveilled to a certain extent. Because I have the services to help me parent. And to get me through my pregnancy. She concluded: “It was the worst parts of being disabled got even worse.” The above section highlighted the many ways in which the absence of appropriate and accessible education across the lifespan can impact disabled women once they become pregnant. Not having access to information about the embodied experience of pregnancy—both as it pertains to women in general and how it impacts disabled bodies in particular—lead to some difficulties for women. Navigating a system that is set up for a particular type of body left women feeling frustrated and sometimes at risk of harm. The lack of accessible resources, classes, and services was a common experience for participants in this research. Not having access to information also resulted in some mothers feeling ill prepared for the embodied experience of pregnancy (e.g., Rhea, Pearl, Maia, Kadence, Cassia). Further, Gail, Kadence and Maia reported difficulties in physically navigating spaces when pregnant as their Chapter 5: Findings 148 equipment no longer accommodated their body. Finally, many clinics and spaces where Kadence, Pearl, and Maia sought physical care for their pregnancy were not fully accessible, or were only accessible for some of their appointments. Many participants shared the importance of relationships during their pregnancy. The supports received by women from partners, personal support workers, family members and professionals were critical in mitigating many of the inaccessible experiences discussed above. These relationships often played a role in mitigating the oversurveillance expressed by many participants. However, oversurveillance during pregnancy often reinforced for women concerns about being too open about their concerns related to managing their role as a disabled parent. The fear that someone would show up and take their baby at the hospital was very real for many of these women (e.g., Maia, Kadence, Rhea, Pearl, Iris, Frida, Gail). Maia, Iris, Rhea and others reported overcompensating and working to demonstrate their ability and preparedness in front of professionals. However, this sometimes backfired for women as their capabilities were often perceived as “not needing specialized resources.” Trauma, both past trauma and traumatizing events and care during pregnancy impacted women in profound ways, as discussed above. For example, Aster, Cassia, Iris, and others reflected that the ability to be honest about past trauma where it might have impacted how they reacted to care and exams. Some participants who had more than one child discussed how the difficulties they had during their first pregnancies informed their confidence to seek different and better care during subsequent pregnancies, such as choosing to have a midwife Chapter 5: Findings 149 or doula. The knowledge learned during difficult experiences often translated into an ability to assert their rights (e.g., Frida, Eleanor, Cassia, and Aster). Labour and Delivery Experiences around labour and delivery for the women were vast, however a few key experiences repeatedly arose. During labour and delivery, a high number of participants reported encounters with medical staff that they felt were discriminatory. Again, accessibility and access to accessible information was a common gap in women’s experiences. Relationships and the people who supported the women in the delivery room were critical, and when the experience of labour and delivery was negative or traumatic, women underscored the importance to have someone in the room who was advocating for them. Women had mixed feelings on the medical staff and the way they experienced labour and delivery. Some women, similar to Diane, felt that they would trust the medical team implicitly, because the medical professionals had experience in labour and delivery, and the medical staff are the professionals. Diane explained why she decided to have a medical delivery: I wanted to go with the doctor, and I wanted to go the medical route because I felt there might be problems. So, I felt that a midwife wouldn’t be an option for me. Knowing myself. So, that wasn’t someone else’s choice. It was a choice I made. And I also made the choice, from the beginning, that whatever my doctor chooses to do, I’m going to go with whatever she says because I’ve never given birth before. I’m going to trust her. For Diane, despite a positive outcome for her delivery, she felt that other aspects in a medical setting were negative, and that her wishes were not understood. But the one thing that I didn’t want was to have an episiotomy. And we did end up having to have an episiotomy. But I had never said Chapter 5: Findings 150 the words out loud. But afterwards I did feel like I had a little bit of posttraumatic stress disorder because I’d wake up and I’d feel like I was being cut again. And I would wake up and I would be in a sweat. But I had never said to my doctor I don’t want that to happen. I was told it was better than ripping. People had said it wasn’t that bad. Of all the things that could’ve happened, it wasn’t the worst, but it was the one that I had in my head that I didn’t want to have happened to my body. The role of this trauma was long lasting for Diane, and she became tearful in telling this part of her story. Aster, who had experienced a traumatic miscarriage prior to the birth of her son and childhood sexual abuse, discussed how this trauma impacted her, and the ways she felt disrespected by the medical staff: Nobody talked to me about trauma and pregnancy and the links between how past traumatic experiences can impact your pregnancy. And impact your birth and impact your parental development … that came from my own learning and reflecting back seeing how … emotionally I missed some information. I am trying to frame that in a better way. My first son was with a doctor. It was pretty standard stuff. I didn’t use a midwife. I went with the medical field. I would never ask them questions because they were the authority figure and I was the patient. Again, I was a person who didn’t have the intelligence to know, or to be able to advocate for what I needed. So, asking for female doctor and not having a male doctor did not really, was something that I never. And then having different doctors every two months, because it was a learning hospital, knowing that I had a right to ask for one doctor to follow me through as much as possible or one or two doctors that were going to follow me through. Or that, what was normal, what was not normal? Emotionally, how was I going to be feeling? Nobody talked to me about emotions as far as what, as what to experience. Despite having asked for a female doctor, she was denied this. And, because of her own trepidation and ideas around physicians knowing best, she ultimately had an extremely traumatic experience, and was emotional as she recalled her experience. Women consistently discussed not feeling like they could advocate for a different Chapter 5: Findings 151 birth experience, especially with their first pregnancies. In a related way, Eleanor explained how the lack of information and choice around her labour and delivery impacted her: I felt forced to have the births they wanted me to have. Which kind of robbed me of what I was hoping to have. If there had been some discussion, “Fine do it your way,” like my midwife had done. But in the end, if we have to do this way, I would’ve been okay with that. For Eleanor, the intersection of age and disability played a significant role: But those choices were taken away from me, and I was so young, I went along with it thinking, “Oh, these are doctors, they know what’s best.” Then I just ended up a big can of regret. Right? … So, they probably did make the best choices. But I didn’t feel informed. I didn’t feel like I was a part of it. I felt like the person sitting in the room that everybody is talking about, but nobody is talking to. That was really frustrating. … I didn’t realize until I was older that I didn’t legally have to say yes to medical procedures. Eleanor’s experiences highlight the intersection of age and disability. And especially, the consistent experience of not feeling like she had enough information. For Eleanor, she believes it was because she was young with her first pregnancy. For others, like Pearl and Rhea, there was the intersection of being young, being blind, and inaccessible material. Most mothers who had a second pregnancy, or who were older when they had their families, seemed to have a stronger sense of their ability to choose who would support their labour and what interventions they were or were not comfortable with. For example, Quinn, who lives with a mental health disability, had her daughter later in life, after having given up on getting pregnant. She felt empowered during her labour. In fact, because her immediate community was so excited that she and her husband had this unexpected pregnancy, she surrounded herself with family Chapter 5: Findings 152 during the labour and delivery. However, Quinn did share that when it came to medication and her health, she deferred to the physicians. Particularly unfortunate was learning that so-called accessible birthing centres—who purport to be safe and accessible options for disabled women—are really set up for a homogenous disabled body, and that there is not always accessible space for women postdelivery. Both Maia and Kadence discussed their high expectations for so-called accessible clinics where they gave birth. Maia, in particular felt that the experience was not accessible and overall was extremely traumatic: In terms of disability, in terms of care, it was interesting because I was at the accessible care clinic … so, I feel like maybe I had too high of expectations of the type of care that I would get. [ … ] The labour process was not an accessible process at all. Their big claim displayed fame is that they have this accessible room, which is great, but … if you go in, and you have a planned C-section [cæsarean section], it’s probably a very accessible experience. And you end up with [a particular doctor], but if you actually want to try to have an actual birth, it was a really inaccessible and frankly scary experience. Often, the support offered for labour and delivery was set up for scheduled cæsarian or other medical interventions to speed up labour rather than allowing for natural births. Cassia felt that medical interventions adversely affected her labour experience: The second [pregnancy], I think this is something that’s not necessarily specific to my illness, but the doctor wanted to deliver. So she gave me oxytocin. Because she wanted it to go faster. And that caused me to have the back labour. And she gave me an epidural. And I think that if she just chilled out, I think because of my illness, sometimes the doctors get nervous. And I also feel like they want to be there when it’s happening and oversee it versus just focusing on a natural birth. I don’t think I got an option at all. No one talked to me about that being an option. Chapter 5: Findings 153 As with some of the previous examples, Cassia felt in this instant that she was not given options, or enough information to make an informed decision for her birth experience because physicians were focused on the easiest way they could deliver the baby. Maia also discussed feeling pressured into having a planned cæsarian rather than a natural birth. For women who have unpredictable bodies (e.g., spasms, weakness), like Maia, she reported there was little understanding of supporting their bodies through the many stages of labour and delivery. Maia also explained how despite consultations, the medical plan was not followed to accommodate her body: I had talked to them in advance and I was really nervous about the epidural because of my spasticity. Because I move at, I jump at unexpected touch. So, I was like, it’s really scary for me to have a giant needle coming into my back that I can’t see, going into my back, and if I move, I could somehow get injured. And they were like, “Oh it’s fine. It’s fine.” They made this pre-plan, but at the end, they did it in a very traditional way, and I was just lucky that I didn’t move, out of just luck, again. And it all worked out. But it wasn’t because they actually took steps to make sure that the epidural was done taking into account my disability. Maia further discussed how despite earlier consultations, medical staff did not seem to understand the limitations of her body: And then, after I was going through labour, there were nurses that would come in, and [I] remember them being like, “Just put your feet together and let your knees fall apart,” which is just not how my body works. You can come in and say that to me, but I can’t physically do that. [Laughter] so, you’ve got to think of something different. And then one woman actually sat on my knee to get it out of the way. And I was like, “What are you doing?” Maia also shared that the accessible options that she was offered during her labour were not there when she arrived. She was disappointed as she could have brought her own equipment if she had not been misinformed. Far into the labour, she found her voice: Chapter 5: Findings 154 And then I just, in the middle of [the] induced labour [ … ] I was like, none of you are allowed to touch me anymore, only [my child’s father] and my support worker are allowed to touch me, and the doctors can just look. [Laughter]. And that was how he did the rest of my labour. And I was there for 36 hours. And then they were like, I think we have to do a C-section, and I think I swore a lot. At that point. Ultimately, I had a C-section after 36 hours of labour. Yeah. The only positive part of her labour was that her son was born healthy. Kadence also talked about using the accessible clinic and felt like the staff was not prepared for her to deliver: So, this whole process is painful and took a lot of energy. … I did go to the accessible care clinic at [another location]. And I talked to the doctor there. I really appreciated that doctor. And I did experience the accessible care clinic as accessible. However, I found the team to be, like, they almost made me nervous. With their focus on the risks. Her main physician was more prepared to allow the labour to unfold as natural as possible. Overall, because the doctor who was confident in delivering her happened to be in attendance, she felt things went well. Kadence shared, [My doctor] was there! So excited! He had actually switched shifts with somebody totally by fluke. He had asked somebody to switch shifts with him on that weekend, and that’s when she was born. And he said, “I have not worked the shift in months.” I had two birth partners. Who are my friends. My sister was there. For Kadence, the happy coincidence of her primary obstetrical physician being present, as well as her birth support team mitigated some of the other difficulties that occurred through her labour and delivery. A few of the participants had experiences with support workers through their pregnancy and labour. These resources were invaluable, however, there did seem to be a disconnect between how the hospital staff treated private, that is nonmedical workers, and what their actual role was in the space. Maia, whose support worker Chapter 5: Findings 155 was with her during her son’s birth, was referred to by hospital staff as Maia’s “bathroom attendant.” For Maia, not only was this extremely disrespectful, but this lack of awareness around support workers in a clinic that promotes being accessible, demonstrated how medical professionals in that clinic did not understand many aspects of accessibility outside of an adjustable labouring bed. Hospitals and clinics that were set up and promoted as accessible for pregnant and labouring women particularly seemed to struggle with accessibility. For example, Kadence, who also has a mobility disability explained her experience: “I didn’t have any kind of adaptive anything. That’s what I wanted from the accessible clinic but they were very focused on pregnancy and birth, and not a lot on the adaptations.” Similarly, for Maia, the only space in the hospital that was physically accessible was the delivery room. As with a number of other women, she felt that staff behaved put out or annoyed about having to accommodate her: I remember after, I ended up staying in that accessible room but the nurses were pissed off at me because the accessible room is in the labour and delivery area, it’s not in the postpartum area. So, I guess the nurses were like, pissy that they had to walk a few extra feet. Pearl also experienced discrimination: And then, in the hospital setting again, they decided that I needed to be in a separate room for my third child because, “I would freak other parents out.” Yep. I was literally told that. The other two, I was in a room with other moms. [ … ] I hate that hospital. Absolutely hate it. Both Maia and Pearl felt that staff were unhappy that they needed to be accommodated, and Pearl in particular was extremely emotional when discussing being segregated from the other mothers after her delivery after her third child was born. Women in general are at their most vulnerable during labour and delivery and Chapter 5: Findings 156 reliant upon medical and other professional staff. Not feeling like their accommodation needs were being met in these spaces had a profound impact on how women entered the experience of starting their families. As during their pregnancies, the women’s support team was important in mitigating negative experiences during labour and delivery. Quinn, who had an unexpected pregnancy in her 40s, talked about how supportive and excited her family was to welcome her daughter into the world: My mom, my mother-in-law, and my husband were with me the whole time. My dad and my father-in-law came and went. I had a very long labour. It was over 30 hours … I had an amazing family support that was with me the whole time. … Just having my family there for me. And so, there was much joy around her birth. Ophelia opted for a midwife, but due to medical concerns, was transferred to hospital. However, having the midwife with her allowed for advocacy regarding interventions she did not want: I was very lucky because I did express to the midwife I wanted to keep it as natural as possible. No cæsarean. I was really glad she did advocate for me. Because there was the possibility of that happening. Thankfully the doctor intervened and we didn’t have to do forceps, but he did have to do vacuum. Finally, Gail, who did not have anyone present other than medical staff when she suddenly required an emergency cæsarean during a regular medical checkup, talked about the trauma she continues to have after this birth. She became emotional during this part of the interview and took a short break to compose her feelings. Fortunately, the hospital was able to call her mother who arrived during the procedure. However, because her partner was in another community, and there was no one available to drive him to the hospital, he was not able to be present. Chapter 5: Findings 157 Evidence suggests that the embodied experience of labour and delivery in inaccessible or barely accessible spaces, where medical staff do not understand how a woman’s disability interplays with medical interventions, has a negative impact on disabled mothers. Many participants discussed how prearranged supports were disregarded once labour was underway. Participants expressed frustration, fear, and sadness about their experiences. Some women shared how they were aware of being physically injured during labour. Not being accommodated during these vulnerable experiences left many women feeling traumatized. Relationships were critical during labour and delivery. Trusting relationships, whether partners, family members, personal support workers or even one medical person mitigated the experience for many women (e.g., Maia, Selena, Quinn). However, for Gail, having an emergency C-section without having anyone present was distressing and continued to impact her. Postnatal Experiences In this section, I discuss the experiences of participants immediately after their birth experiences. Below, I discuss some general experiences, and then I will explore the experience of breastfeeding as this experience was shared by many of the participants and demonstrated the many ways in which participants struggled to be accommodated. Accessibility was a key issue for the women during their postnatal experiences. In particular, most women reported that the hospitals and clinics were not accessible after delivery, contributing to a strong desire to get out of the hospital and home where their space was accessible for them. For example, Pearl reported Chapter 5: Findings 158 being segregated from other new mothers because the staff felt that her blindness would be unsettling for other new mothers. In terms of accommodating when I was in the hospital, and had to learn the route, no. But I kept both, no, three times with my babies, kept them in the room with me. Because I was not going to learn the hospital nursery room. And take my baby down the hallway, and have one more thing to have to prove or show. I wasn’t going to do that. Pearl also kept her infants in the room with her after all her pregnancies as she did not have time to learn the route between her room and the nursery, and she also had concerns about being watched while she navigated carrying her infant and finding her way back to her room. Eleanor expressed frustration that she did not know what to expect from her body after delivery of her first baby: Nobody told me that I was going to bleed after the baby was born for as long as I did. Until after I’d had the baby, and I was coming home, and the nurse told me, in the hospital. Her exact words were: “You’re going to bleed for eight weeks.” And I was like, what? And she was like well, “6 to 8 weeks.” And I was like, “What?” And she was like, “You didn’t have a period for nine months, where do you think it goes.” That was exactly what she said to me. … I was so dumb back then. “All of my periods have been stored up? They’re going to happen right now?” And she was like, “no,” and she had to explain it to me. “Everything is going to come up from the baby, and your uterus has to shrink down.” And she was telling me all this, and I was like, “Why didn’t anybody tell me this.” And she joked, “If we had told you this, you wouldn’t have had the baby.” For Eleanor, the lack of information about what to expect after her pregnancy was related to not having information about sexual and reproductive health growing. Relatedly, access to information in alternate forms was again an issue for many of the women postnatally. And for Aster, who had a processing and reading disability, the long forms she was asked to fill out and the photocopies to read were not Chapter 5: Findings 159 accessible. She reported being afraid to ask for help because she did not want to be perceived as “incapable.” And for the three participants who were blind, not only were forms inaccessible, but also the hospital bracelets and signs. Selena shared: For me, it’s about a lot of the barriers I faced, was access to information. Reading things. Someone handing you a pamphlet. Or, you know what I mean? And then you say, I can’t read that. Oh, they’d be like can he read this to you? That kind of. It was a lot of information stuff. I couldn’t read my baby’s bracelet to confirm it was my name on the bracelet. That seemed to throw people. For me it was about seeing information, I think with the things that were never really figured out. Even if you went back to the same place, every couple weeks. [Laughter]. Still can’t read it. Which was frustrating. For her, and for other mothers, their partners and extended family often had to assist and accommodate in these situations. In addition to issues of accessibility, concerns about surveillance also contributed to women’s desire to be discharged. Several women discussed being kept longer than average. Their feeling was that the maternity wards were creating excuses to keep them in hospital. Pearl explained: When I was in the hospital, with my third child, I swear they tried every flipping possible test on my son, so that by the time the fifth day came along, I said, “I am leaving with my son, and there isn’t any other test that you can possibly run that is going to keep us longer.” And the office administrator said to me, the manager of the floor, “Well, you know you have to take the baby in a car seat home. You have to take the baby home in a car seat.” And I said, “I know.” And, when you came through that door with your assumptions, it was on the right-hand side of the door. You just walked by it. You know? We have to focus on that stuff versus other stuff. Pearl felt that she was kept long past when most mothers go home because the staff wanted to observe her longer. Several other mothers reported similar extensions on their stay in the hospital, including Rhea, who reported having to demonstrate that she could care for her child once home. Chapter 5: Findings 160 Several mothers reported being concerned about child services being called and losing their babies before they even got home. Eleanor, who previously lost custody of two of her children related to her ex-partner and domestic violence, had concerns to the point that she tried to keep her delivery as secret: There was a lot of stress through my pregnancy. By that point, me and my ex had separated due to domestic violence. And the Ministry was involved and they had taken my two older kids. And it totally skyrocketed my stress with my baby. So, I was dealing with that, along with my pregnancy. Even when she was born, I tried to make sure my midwife didn’t let the social worker know that she was born. I was so paranoid they were going to walk in to the hospital and take her. … I made sure the hospital was really quiet about it to the point that the social worker didn’t find out about it until two weeks later. He was like, “Oh, I didn’t even know you had your baby.” And I was like, “Yeah that’s kind of the point.” [Laughter]. Sorry dude. I don’t trust you. For Eleanor, keeping her birth quiet for a couple weeks helped to address her fear that family services would take her baby from her at the hospital. For some mothers, trauma intersected with the oversurveillance they experienced. Aster spoke about her history with self-harm as a youth, and the way that being watched coupled with a longer stay at the hospital impacted her: In my high school years, I used self-harm as a way to cope. So, I had some very visual scars and I remember at one point, I wasn’t sleeping at night in the hospital. I would try to sleep when I could and I remember waking up to this woman sitting beside the bed, and I think she had introduced herself, and she was a social worker, and she asked about the scars. I said, “They are old. And no, I have no intention of starting self-harm again.” So, those three days were all a blur. I remember being in tears, when they said they wanted me to spend an extra night because your son’s not eating. And I just broke down, and I kept saying, “I want to go home. I want to go home. I want to go home.” And they were pressuring me to stay. My mom was there at the time and she was pressuring me to stay, as well. So, I did end up staying but they moved me into a room by myself, which was, I think [when] I had my first actual sleep since he was born. Chapter 5: Findings 161 Aster felt that she would have been able to manage the initial days with her newborn if she could have been home, in a more accessible environment where she would be less stressed, and able to get to know her son. Knowing other parents who had their children taken away because of hospital staff bias was very much a part of women’s narratives regarding how they navigated their time at hospitals and clinics. Iris expressed how stressful it was to be reported to child services immediately after having given birth: They kept me for five days. For monitoring. Because they thought that I couldn’t do it. During that time, I had a visit from a social worker. My case was opened with the Ministry of Family and Child Protection. I was really thrilled. I was a first time, new mom, I was not ready or expecting that. That continued all the way through. Several of the women, including Iris discussed knowing other women who had their children taken away immediately after the birth. Reflecting on being reported, Iris became quite emotional: I felt really judged. They, at first, I met them, they asked me what I thought it was going to be like to be a parent. How I was going to discipline my child. What I was going to do if they act in certain ways. I had no idea that they were going to be so in-depth. I guess, judging. They were more judging than helpful. For Iris, who lives with a psychosocial disability, the experience of being reported was traumatizing and made her afraid of child services taking her child away. She expressed this concern several times during her interview. And for Iris, experiencing an intervention in the hospital before having had a chance to demonstrate her parenting style was more traumatizing than helpful. Further, she did not feel like the interview was helpful, she did not receive any information that would help her with parenting, rather, she felt judged before she even started parenting. Chapter 5: Findings 162 Some women mitigated concerns about being reported to child services through a strong presence of their able partner, or extended circle (e.g., Selena, Kadence). And although some mothers reported feeling like they were released without much ado, mostly because there were assumptions about their male able partner stepping up (e.g., Nina, Selena, Quinn), others, as described above, had the opposite experience. Maia, who did have attendant care several hours a day, and who has an able-bodied partner, still reported that she had some difficulty being released from the hospital: And then one nurse, goes like, asking what my attendant care schedule was, to try to like, release me on, when, [my partner] is an able-bodied man. You can release us. We can leave without a support worker at home. It’s a reasonable thing to do. She was very frustrated that even with an able-bodied partner, the hospital staff was preoccupied with how she would manage at home. Finally, Rhea, whose son was born premature, had many positive experiences while he was in the neonatal intensive care unit (NICU). The nurses adapted to her blindness by teaching her how to change a diaper in the incubator. They also taught her how to do kangaroo care. However, she felt profiled as it came closer to taking her son home: It was more than when I was leaving that they started to worry. I think maybe it was because when the baby was with them, they were less worried. So, they said, we are really concerned because when you get home, you are not going to know if your son turns blue. So, you’re not going to know if he is running out of oxygen. So, you have to have your sighted husband there all the time. And I flipped out. What? Rhea, who is very pragmatic took time to go home and reflect on the concerns of the staff: Chapter 5: Findings 163 But then I went home and I thought about it. And I talked to some of my blind mom friends. I had a lot of mentors. Luckily. I thought it through. I thought my pride, I don’t want my pride to be more important than my baby’s safety. Anyway, so, I talked to a friend who was a nurse, and they all said, “No, no, there are other ways you can tell.” And I knew that anyway because, I know my baby. So, I went back, and I told him really calmly that I had investigated it, and that I was taking what they said seriously, because it’s my baby’s life. As with other mothers in this study, the accommodation and creative alternative solutions were up to her to discover, and then she was obligated to demonstrate that her alternative methods were as effective as those for sighted folks: But, then, they sort of relented, and the one of the nurses had a talk with me about different ways to tell. I can’t remember the specifics right now. And, then they were fine. But it took a fair bit of education at that point. I remember sitting in a room with the social worker, and the nurses, and explaining to them that I needed to learn how to do this. And that it wasn’t okay to say that my sighted husband needed to be there all the time. That really was, I didn’t like that at all. The opposite of what Maia experienced with nurses who assumed that her male partner would not assist with care, Rhea’s nurses suggested that her sighted partner needed to do all the care, or at least be present to make sure she did it correctly. Other mothers downplayed their disability or used their ability to “pass” as able to remain under the radar of oversurveillance. Selena, several times, talked about not necessarily alerting medical professionals to her disability: I think I would say it wasn’t a point of significance, disclosure. The nurse didn’t come in and say, “Oh, I understand you can’t see very well. How would you like me to teach you how to breastfeed?” It was almost like it was ignored. It wasn’t even acknowledged, more than anything. However, she admitted that by not letting staff know that she has limited vision, she was also not accommodated: Chapter 5: Findings 164 If there was something that, now that we’ve talked it through, that I would say, I wasn’t accommodated. People didn’t come in and say, “I know you can’t see very well, let me get in a little closer and help you with the baby to do this.” Me and my husband just figured it out. Another strategy used by the mothers to combat oversurveillance was to present as highly educated and prepared for the child to come home. Kadence recalled: [A] nurse came and said, “Oh, I was going to stay overnight because public health was coming in the morning and she was going to take care of the baby.” I was like, “What?” And she was like, “Well, you really need a social worker.” And I was like, “I have two social workers, and I am one.” Yeah. I did actually see that nurse again, later in the pregnancy, but I talked to the department about that right away. They said they would talk to her. My understanding is that they absolutely did because her demeanour was not the same the next time I saw her. Nearly every mother had a plan and had thought about how to navigate a child services or social worker intervention. For example, Kadence, Maia, Pearl, and Iris reported overpreparing for any questions they might be asked. Finally, although many mothers experienced oversurveillance and interest from medical staff on parenting issues, Nina’s needs were overlooked. Nina, an older mother, who is highly educated and established in her career, has limb difference, and an able partner, requested support and solutions to how she could manage her newborn at home. She was told, repeatedly that she was “fine.” Despite her requests, she never did receive any support on adaptive ways in which she could care for her child. Literally, up until the minute, the minute that they handed them to me, I still didn’t know how I was going to hold him. Really. So, I had a 28-hour labour, I had a C-section at the end of it after 28 hours I was so tired that I was hallucinating. You know? And then they wrap him up, and they just hand them to me, and I was like, I don’t know if I can hold him! I made them put pillows under my arm, in the gurney Chapter 5: Findings 165 kind of. So, at least he would be resting there. But I didn’t know what I was going to do. Fortunately, her husband had extended benefits with his employment: My husband, in the end, his work had just passed an exceptional circumstances maternity policy. And, if you thought that you had exceptional circumstances, you could argue for up to 16 weeks of leave. So, he did that. They granted it. So, my husband was home with me for four months. But, every single time I had to feed my son, every time I had to feed him, my husband had to hand him to me. And, I couldn’t burp him. I couldn’t hold his head up. Because as you know, their necks, I couldn’t hold him and hold his neck at the same time. So, he had to be handed to me. I had a big stiff breastfeeding pillow that I used. And then I had to give him back, and then my husband would burp him. He changed all the diapers for the first four months. But, no formal supports. And I know the system. And I asked, actively and regularly. And there was nothing for me. Nina expressed how grateful she was that her husband has extended leave with his job, but she also shared being frustrated that despite asking to learn adaptive ways to manage, she was never given any options. Breastfeeding One unexpected consistent topic related to accessibility after labour and delivery for the women was the experience of breastfeeding. The ability to make the choice on feeding their infants is a perfect example of the disconnect between rights, choice, ableism, discrimination, and the embodied experience for many disabled new mothers. Assumptions and biases, even when not vocalized, seemed evident in the women’s narratives. For many women, there was pressure to not breastfeed, and finding support to facilitate this choice was a challenge. There were a number of common experiences for women in these conversations. There was a lack of accommodation Chapter 5: Findings 166 or awareness of disability accommodation for successful breastfeeding. Several women commented that they felt pressured to not breastfeed, and when they pushed to make their own choices regarding this, they experienced oversurveillance and “concern” for their infant’s wellbeing. As well, there was a lack of access to information regarding the embodied experience of breastfeeding. And finally, women felt there were not enough resources to support their decision either way to breastfeed or formula feed, including access, funding and instruction to use breast pumps; access to lactation consultants; and access to funding for formula. There were also some inconsistencies of experiences. In some cases, having an able-bodied partner was a benefit, whereas in others it was not. And women who had access to private resources noted that they were able to hire their own lactation consultants, purchase breast pumps, and benefited from this privilege. Further, as with so many other areas of privilege, the ability to “pass” as abled benefited some women and they noted this privilege. Aster, who lives with a mental health disability and a learning disability, spoke about feeling out of control in the hospital and also expressed distress over the invasive touching from hospital staff. [With] my first son, again, it speaks to I really didn’t feel in control. I was in the hospital, we had him and so there was lots of medical professionals around. So, I was in the hospital for probably three days afterwards. They were going to keep me for two nights and I was supposed to go home on the third day but they kept me an extra night because my son wasn’t latching on. So, I really felt confused and I felt like I was losing my mind during that first week. Like, I was lucky, I was in a private room. But the nurses were constantly coming and going, so, I didn’t know who was who or what was going on. And, because my son wasn’t latching on, I kept having all these nurses coming on and trying to attach this baby to my breast. And nobody, I mean, I knew why they were all there, but Chapter 5: Findings 167 they would be telling me what to do, and they would be touching me, something that I don’t like. I don’t like to be touched. So, of course, I was getting upset and my son was getting upset. And these nurses were trying to tell me how to cram his head onto my breast. And I remember at one point, I said, “Stop touching me. Go away. We will figure this out.” So, I don’t know what happened after that, but I do know, I remember feeling very lost and disoriented. Finally, as so many women in the study discussed, she did connect with someone who was able to help and support her. You know, at that point, so it was about three days of not sleeping. And, one of the nurses had gone down and got a nipple shield, because the lactation consultant that they had at the time didn’t believe in nipple shields, and, so, nobody had suggested using a nipple shield. I didn’t even know what a nipple shield was (laughs), it’s like a little silicone thing that fits over your breast. Like a little sombrero (laughter). So, she had actually gone down to the pharmacy, which had closed by that point, but she had gone down, and she had got me one. That was the night that he actually latched on. Similarly, Kadence felt, in retrospect that the hospital staff neglected to support her in breastfeeding her infant. Kadence, along with several of the women, discussed feeling uncomfortable with hospital staff, not something they could explicitly point to a feeling of discrimination. I was given access to a (retired) midwife. So, she was quite good and I was very glad to have access to her, even though it was on the “floor” [not during delivery]. … There was a weird, I can’t really explain in my mind, I know that she was very concerned with my past history, [unintelligible], because she did say that. But then, for breastfeeding my daughter, she really wanted me to get the hang of it. And, I felt like she was too bossy. She was too pokey in those moments. … And then it got weird when she asked me if I loved my daughter or not. And then she said, because some people don’t love their kids. And then I’m like, “I’m well aware that that’s not the situation here.” So, I actually asked her to leave, which was a bit awkward. … because I, literally every other interaction with this woman was fantastic, but I do think, I think something, I don’t know, I think something was going on there. It wasn’t me. It was her. [Laughter] That’s all I can tell you. Chapter 5: Findings 168 Maia, who also lives with a physical disability related to cerebral palsy, felt that staff attempted to coerce her into promising to using formula once she was home, despite there being no medical reason for her to bottle feed. I remember that first nurse, I was pretty mad at her because of the bottle feeding initially. I did struggle a lot figuring out pumping, and breastfeeding stuff. And they didn’t want to let me out of the hospital because I wasn’t willing to be, I wasn’t willing to switch to formula. I was just like, I’m going to figure out this breastfeeding. I will not agree to leave on the premise that I will feed him formula, which is not what I’m willing to do. So, I feel like there was a bit of a struggle there. As with a couple other mothers, Maia and her partner privately discussed strategies for dealing with the hospital staff without directly lying. I was just like, we just wanted to go home. [My partner] and I felt like, by the seventh day in the hospital, we were like, really trapped. We were both strategizing what I was willing to say so that we could leave … “Could I say that I am open to formula on some level?” That’s it—just say it. Another mother, Nina, who lives with limb difference and a mobility disability, discussed her concerns regarding the lack of support and information provided related to breastfeeding. The person that I saw around breastfeeding, in the hospital, you know you have a breastfeeding consultant that comes around while you’re in those first few days … she had one look at me breastfeeding, and she said, “Oh, you’re doing great.” That was it. And then she left. And I wasn’t doing great … Like, I had a C-section, so, I had no milk. I got him home, and he was freaking out. The day that we finally got home. So, I was in the hospital for a couple of days, and I had no milk. And I didn’t know why. And I didn’t know what I was supposed to do. We were calling people. Frantically calling doctors. You know, and we finally got some advice to just put some formula in a shot glass, and kind of spill it in. Until my milk came in. But, we weren’t doing great. Chapter 5: Findings 169 For Nina and her partner, the access to personal funds and private resources allowed them to find solutions and care for her son. However, she noted that this is a barrier for women who do not have the financial resources to pay for consultants and private care. Beatrix, who has a mobility disability and lives with spina bifida, similarly noted the challenges with proper information, particularly, contradictory regarding all tasks related to child rearing, and specifically to breastfeeding: I did feel supported by my friends and family. And my mom came and stayed with us. To help me. I had some trouble with breastfeeding that I thought, it was a little bit like, I was a bit unsupported. Only because everybody had an opinion and it was all contradictory. And I found that really, really frustrating. So, the doctor would say one thing. A public health nurse would say another. And the hospital nurses said another. My mom’s sister is, was a midwife, so she had yet another opinion. I found that really frustrating. Quinn, who lives with severe and chronic depression as well as a learning disability, highlighted the challenge of lack of communication: hospital staff did not communicate what they were doing, and as with several other mothers, there was no warning before touching women’s bodies. You know, the only thing that stands out is when they were teaching me to breastfeed. And the nurse literally came on, came into the room, as I’m struggling to figure this out, and just stuffed my boob in my daughter’s mouth. Didn’t explain what was happening. Just did that. Quinn felt that there was a lack of education on the physiology of her body, and what to expect to feel and experience, in this case, related to breastfeeding. Rhea, who is blind and had a premature birth with one of her children, discussed her strategies to ensure that her choice to breastfeed was respected. Chapter 5: Findings 170 The other thing that I did, I pumped my breast milk. For four months. And I was one of the only moms, that in the end, was able to breastfeed full-time a micro preemie like that. I was proud of that. I felt like there is not much else that you can do when your baby is so sick. So, it was something that I could do. So, I pumped all day long. All night long. I had a freezer full of milk! It was incredible. Despite having been able to produce milk while her infant was in the NICU, nurses and staff appeared concerned that she could not care for her infant once they went home. I remember when I was leaving the hospital, there was one nurse that, I was having trouble getting baby to latch on, for breastfeeding. I was getting some help; my mom was helping me. Like everybody does at first. And she was like,” Well, how are you going to do that when you get home?” And she was really rude. That was definitely related to my blindness Selena used a strategy I heard from a number of moms who are able to appear abled. She remained silent on her accessibility challenges in order to not experience oversurveillance, however, as described in the preceding section, she noted the consequence of not being accommodated due to the fact that she did not disclose. Finally, Diana, who has nerve damage and fibromyalgia as well as a mental health condition, really wanted to breastfeed despite some family history of difficulties with producing enough milk; because of this, she did not have anyone at home to help her with the practical aspects of breastfeeding. A nurse, during the night, joined her and stayed with her so she could discuss her concerns and strategize on solutions. She just sat with me and she just talked with me. And, one of the things I was really concerned with, the stories in my family that both my grandmother and my mother were never able to produce any breastmilk. So, I was really concerned and I really wanted to try my Chapter 5: Findings 171 hardest to breastfeed. That was something that I really valued and I really wanted to learn, but I couldn’t learn it from my mom, or from my grandma. Because they weren’t able to do it. I didn’t have anyone to talk to about it. And she just, at two in the morning, sat up with me and talked with me about breastfeeding for two hours. And she made me feel so comfortable and okay. And she was like, “However it works for you.” She was just so calm and gentle. I guess, it was the middle of the night so she was able to take that time. She just really stood out and it was this amazing conversation. It felt like she filled in for my mom in the way that the conversation happened. It wasn’t like talking to a nurse or a doctor. It was the way I would’ve talked to my mom. And getting that kind of advice. And I just remember that was so lovely. And she didn’t have to do that at all. Right? That was really great. For able-bodied Canadian women, the choice to breastfeed or not is often taken for granted. However, for women with disabilities, there are many barriers to informed choice. Some of the key barriers are: access to education on the embodied experience of breastfeeding; instruction and accommodation of disability needs to facilitate breastfeeding; and access to resources such as lactation consultants, breast pumps, and formula. Further, from this sample of 18 women, it is clear that there are inconsistencies with treatment in hospital and during the early months of being home with their infant. Attitudinal barriers, biases, and discrimination from staff influenced the outcomes for these mothers. Three factors seemed to impact treatment within hospitals: the ability for the mother to “appear” abled or “pass,” having an able-bodied partner, and having access to personal resources. Postnatal experiences initiated women into their embodied role as a mother. In this section, I used the particular example of breastfeeding to demonstrate the ways the five themes converged into one aspect that some mothers chose to engage in. For many participants, a commitment to breastfeeding was a critical experience in the journey to motherhood and the difficulties they encountered in this Chapter 5: Findings 172 experience demonstrated many of the frustrations and joys in the journey to motherhood. Many aspects of the postnatal experience were inaccessible and challenging for participants. The increased surveillance that women reported after their children were born reinforced, for many women, fears of authority figures in the hospitals. A number of women reported not seeking postnatal supports because they worried that asking for assistance would be seen as demonstration of incapability. Relationships again played a pivotal role for women to navigate the hours or days postdelivery and get home with their child. Adoption This section is an addition to the other life history milestones, in that the two participants who adopted their children, did not go through the same milestones of pregnancy, labour, delivery and postnatal as the other 16 participants experienced, yet, their narratives on becoming parents was important. Two participants in the study adopted children, one in each province. Of interest was the way these women approached their decision making and how they navigated an ableist system. Both women were single, were educated with master’s degrees, and lived in rural locations when they adopted. Both women live with multiple conditions or disabilities. Finally, both women elected to adopt a child with a disability. Both Heather and Lily were very thoughtful about adopting, and discussed the idea of being a mother, with their particular disabilities. Heather, who lived in Ontario, recognized early that she wanted to adopt a child with a disability; when she was diagnosed with a heart condition in her late 20s, Chapter 5: Findings 173 she contemplated the high number of children in the system and weighed this against the risks related to her condition and pregnancy. Unlike so many mothers in this study, she connected to a specialist who was able to give her real information on the potential risks and what her options were. She candidly shared with me her process of adoption: I didn’t want to go my whole life without motherhood, experiencing being mother. I really considered it and I, and I really thought I could handle it. I don’t think I was ever naïve about challenges. I was very careful about the type of child I was willing to adopt. I want to make sure that it was a kid that I could handle with my disability. Although Heather had many supportive people around her, she did ultimately face difficulties with some family members and friends who did not think she should/could care for a child: There were lots of people who, you know, and some of them have come around since I’ve adopted her, and seen that it has worked. Some have not. Literally we have family members who are not talking to me, and who have never met my daughter because they disagree with my choice. She also discussed the many layers of people and systems that needed to be convinced that she was capable of raising a child, in particular a child with a disability: I had an added challenge too because my daughter was adopted. I didn’t just sort of have to convince my family and friends that I was capable of being a mother. I had to convince Child and Family Services that I was capable of being a mother. I had to convince adoption workers that I was capable of being a mother. I had to convince a judge that I was capable of being a mother. I had to convince social workers. I had to convince so many people and every step it was scary. Part of the journey to adoption includes the reality that not every adoption is successful. Heather had the heartbreaking situation where a child, who she refers to Chapter 5: Findings 174 as her son, made it through many stages of the process, only to have the adoption denied in the later stages of the process. She was extremely emotional speaking about the foster parent, who, because of her bias about disability and rural locations, was able to convince the social worker to veto the adoption: For me, before I adopted my daughter, I was in the process of adopting a son. So, for three months, I was with him half time. And he called me mom. And I referred to him as my son. And his foster mother did not believe that I could adequately care for him because my disability. And she did not believe that we had the services for him in the area that I live, and she didn’t think that anything outside of [the urban city nearby] was any good. So, she actively worked to convince the social workers that because of my disability, I was not capable of caring for him and it worked. She convinced them and they took him away. Her resolve to create a home and the social worker that supported her in this process really speak to her commitment after this difficult situation. Lily, who lived in BC, did not really think about becoming a mother until she was older and had completed her education. Below she discusses her thoughts in coming to the decision to adopt her son: I guess when I was younger, I didn’t really have that connection to wanting to mother simply because I thought you had to be married. So probably just before I turned 30, I really started to have this feeling like I really wanted to mother. But, I was trying to figure what that would look like. I was single. I wasn’t going to go find a relationship just so I could be a mother. And I also knew that, for me, looking at donor insemination was not realistic. Because I have health issues that potentially make pregnancy very complicated for me. So that’s how I started to begin looking into adoption. And of course, like most people, you start looking into international adoption. And I started getting some information sent to me from different groups just on what adoption looks like before I finally settled on what’s called “domestic adoption.” Or, adoption through foster care because I felt that that was the best option for me. Chapter 5: Findings 175 Of interest in Lily’s journey is that similar to Kadence, she found herself over 30 and wanting to become a parent. Lily decided to explore adoption, and Kadence chose IVF. Both women discussed barriers they encountered as disabled women, yet they pressed on through the barriers and both became mothers. Similar to Heather, once Lily became aware of the many disabled children in long-term foster care, that became the preferred path for her. Although there are different processes in each province, there are also several similar steps that potential parents need to work through. Both women reached out to the appropriate agencies to begin the process. Lily explained that in BC the first to steps involved attending adoption classes or “courses” that were “three or four day long intensive seminars … where they talk about the needs of the kids” and about the trauma that kids in foster care have gone through. After the course, Lily met with an adoption social worker who conducted “extremely intensive interviews … [and] looked at pieces of my life that could be concerning factors.” Her disability was one of the factors that was considered. Because she was managing it well at the time, she was approved to proceed to the next step of adoption. The process for her from the start to an initial match was approximately 2 years. Lily reflected on some of the barriers that she noted along the process, in particular, initially she was encouraged to consider fostering rather than adopting: And, one of the things that is interesting, although the, our Ministry says that we want singles to adopt, we want same-sex couples to adopt, the truth of the matter is that it’s really hard for some social workers to wrap their heads around the concept of a single parent adopting. So, it had been suggested that I get foster kids, look at doing something like that. Chapter 5: Findings 176 Heather discussed similar barriers that single parents encounter that would not be as challenging for a two-parent family. One of the rules is that the child, during the probation period, is never to be alone. Living in a location where she needed to shovel snow, as well as typical things like having a shower or going to the bathroom were impossible: Because when the kid comes you in the beginning, they are still a foster kid, right? So, you are a foster parent you know and have all these rules that you have to follow. But they are designed for two-parent households. Not designed for single parents. They’re not designed for somebody who has a disability. They are not designed for you know and it’s like: How on earth am I going to do that? When she first came to me, one of the rules was I could not leave her at all for any reason. I could not leave her alone, and my big thing was, I had to shovel the ramps on my house for us to get out of the house. And it’s like, I have to leave her in the house, to shovel the ramp so that we can get out. When she tried to suggest solutions, she hit up against a system that was not adaptable for families that look or function differently than a typical two-parent, able-bodied family. Heather spoke of the difficulty that those rules created for her as she transitioned into full-time parenting: It was kind of like, and particularly like that first chunk of time, where she like never left me, right? I had her all the time. I mean not being able to get anything done. You know, whatever, but that being paired with people coming in, and it was so stressful, it was just such a stressful time for me. And on the heels of losing my son, and just freshly kind of learning everything? I think I was still learning how to care for her. So, learning how to do you everything that I needed to do for her because she was so very new to me. And just like, oh, God, what if somebody comes in and they find out that I’m not perfect, that they think that I can’t do this. Right? These early rules created significant stress for Heather, but the rules were part of a larger system of barriers. Heather, too, went through required course work and an Chapter 5: Findings 177 interview process. This was a further hurdle as Heather lives with a learning disability and vision processing disorder. These experiences exposed a system based on ableist norms and contributed to lack of access and a sense of oversurveillance. While there were common threads between the two stories, there were differences based on the jurisdictions within which the women lived. One of the differences between Ontario and British Columbia is the process after approval. In British Columbia, the entire process is managed by the provincial child services Ministry, whereas in Ontario, parents then connect to an organization called Adopt Ontario. That said, both engaged in a transition period once the adoption was approved. For Lily, the Ministry required a slower and longer transition period. Lily also navigated the community and her circle of friends after the transition period was over and the adoption was being finalized. Because her son was 11 when the transition period ended, she immediately launched into advocating for him: [Because he] has FASD. So, it very quickly became me advocating for him. The school system was a little bit difficult to deal with. In that dealing with some things, I think there was kind of a perception that I wasn’t [my son’s] birth mom, and that I didn’t know him very well. So, when I was advocating for his needs in classrooms it was, I think some of my ideas were dismissed to a degree because of that. Another perception Lily experienced from the community later was assumptions about her and her behaviours related to her son having FASD—not everyone knew that he was adopted and Lily encountered multiple times where people judged her as having damaged her child when pregnant. She spent a fair bit of her time balancing her personal feelings around these assumptions with educating people on Chapter 5: Findings 178 FASD, and choosing to be supportive of families rather than being judgmental and condemning. The final step to adoption is the legal step to finalize custody. This process is extremely different between the provinces. In British Columbia, this process occurs behind the scenes and is managed by the government through the MCFD. Heather, in Ontario, had to attend court and go through the legal process. And at the end of the process, she encountered another barrier with the judge: And that’s how I started, right? And then, and then with my daughter, it was always, it was always scary, you know? Right up until the judge signed the paper saying that she was mine [very emotional]. Just that fear, that somebody was going to say that because of my disability, I couldn’t be a mother. That they didn’t think I would be good enough, and they could take her away from me. Even after her being with me for years, she was with me for a year and half, before her adoption was finalized, and at the very end, like even at the very end, like she had done so well with me. And the social worker was like, “We’re so good, and, like so much evidence, and we’re so supportive of you, and you have done such an amazing job with her.” And we had our court date and the judge came back and he wanted more information about my disability. And they dropped the court dates. And, I just, you know, and it’s like, oh God, if you get the wrong person who has the wrong prejudice about disability, you know, it feels that because of the disability, you know, a single disabled mother can’t look after a kid, you know, I could have lost my kid. Ultimately, it was only a few more weeks before she was able to meet the needs of this judge, however, in listening to Heather, it is clear that her first experience with losing her son due to assumptions about her ability as both a single mother and a disabled woman had a long-lasting impact. It was it wasn’t just dirty glances and nasty comments and being treated crappy. I mean, it was the chance, I mean, I could have lost my daughter. And I lost a son. It was only three months, a lot of people are like, it was only three months, I would like you to go up to a mother with a three-month-old, and grabbed him, and say I’m Chapter 5: Findings 179 going to take them because you’ve only had them for three months, so you know, it’s only been three months and I’m sure you will be fine. The difficulties experienced by Heather had a long-term impact on her, and when she discussed losing her son, the profound grief she experienced was evident. Both women in this study who did adopt discussed the importance of having an ally in their social worker. Further, despite many obstacles such as issues of accessibility and concerns of oversurveillance, both women stuck to their plan in adopting and were successful in this process. It is clear that the intersections of their situations did impact the process, that of being single and disabled; however, both women talked about the importance of having a higher education and the way this influenced assumptions about their ability to navigate and be successful in adopting their children. Of note, several other disabled mothers (e.g., Kadence, Rhea) discussed how they felt that adoption was never an option. They had assumptions about the adoption system in Canada and were influenced by messages they received over their lifetime that indicated that disabled people do not get to adopt because they are not seen to be “fit” parents. Further, Rhea and Pearl shared anecdotal stories of friends who had attempted and been unsuccessful in adopting, and they also often connected the barriers to adoption with the high apprehension rates and investigations they had experienced or witnessed from child services. Raising Children This next section focused on the life history milestone of raising children. There are many aspects of raising children that have the potential for creating inaccessible. Further, there were multiple shared experiences of the participants Chapter 5: Findings 180 related to barriers they experience in raising their children. I have divided this section into five subsections: supports and resources; oversurveillance and fear of child services; childcare and schools; housing; and transportation. Supports and Resources Several of the participants used, or had used in the past, programs to assist them in parenting tasks, or with personal care, their child’s care, or with household chores. Again, there was a marked difference between whether women used private or public services for this labour. Women, who use or used programs like Kadence, Gail, Maia, discussed how these programs definitely were an asset and supported their role and confidence as mothers. That said, with these resources, there was an increase in feeling surveilled and judged as a parent. Women discussed how they negotiated this balance of need with feeling invaded and overmonitored. Independently being able to hire and manage these resources/workers indicated a stronger sense of control over who was in their home. However, participants mentioned that it is not always easy to find qualified workers who will accept the wage that is offered through these programs. For example, Maia shared, I think that the layer of it was, my whole pregnancy and my whole parenting experience has been, I feel like I’m perpetually watched. It’s really great to have nurture care assistance, but it means that you have support workers here, all the fucking time. I remember when [my son] was first born, we had 20 hours of nurture care assistance. Which seems like it’s really awesome except that means 20 hours of somebody in your space, and in your face, watching how you parent. I feel like my whole pregnancy, and my whole experience of parenting has been surveilled to a certain extent. Because I have the services to help me parent. Chapter 5: Findings 181 Maia recognizes how important her resources are, and for her, the ability to hire and plan her support services is critical, but the payoff is that she feels constantly under surveillance and she also experienced fears that her child would bond with a support worker. Kadence had similar experiences, and both women discussed balancing the needs of their child with their own need for privacy. Gail, who co-parents her child, discussed how relying on services to do basic things like get groceries, or attend family events can be frustrating but she also expressed how grateful she is for the services. Oversurveillance and Fear of Child Services The fear women experienced related to losing custody of their children or of being investigated by child services was a persistent topic across the lifespan, as indicated in previous sections. The implications of this fear meant that women were often afraid to ask for supports when they were needed. I had a specific question in the Interview Guide (Appendix F) where I asked if they had ever decided not to ask for supports or services because they were concerned about oversurveillance. Nearly every participant immediately thought of a time they did not ask for assistance or resources. The only exception was Selena who had older stepchildren, an able-bodied partner, and her mother living in her home. Every woman reported feeling the need to overperform as mothers when in public, putting unnecessary stress on their lives and on their families because they were concerned about oversurveillance. Several women, including Eleanor, Gail, Lily, and Frida discussed having encounters with social workers and government interventions, which were, or felt Chapter 5: Findings 182 like, oversurveillance. Frida, who lives with autism spectrum disorder (ASD) and a physical condition, experienced multiple reports made to child services. Although not typical, she felt the Ministry had been in her home often enough that they understood these reports were being made by folks with preconceived ideas about what mothering should look like, and that the reports were not based in neglect or abuse of her children. I’ve been reported four or five times now … They don’t even contact me. They just send me a letter. They haven’t been so great for a lot of people, but I have been fortunate in that, with all the reports that I’ve had, they were so easily disproven … They’ve become allies for us. I’ve been fortunate in that regard. At one point these reports turned quite malicious when one of her children was quite ill, and not yet diagnosed with cancer. She discussed how this particular investigation traumatized her because the police were involved: “One time they showed up at my house with the police escort. Only one time. I have cop-related trauma and that was not okay.” Gail and her partner, who lives with a mental health condition, reached out to a local community group to ask for help when he was having difficulty with intrusive thoughts. They just keep calling the cops on him. He’s not threatening. He’s just trying to share. And immediately when the therapist heard [his] intrusive thoughts, he said “This is way too complicated for me I think you should call [child services]. I know he was just suggesting, and not threatening, but it doesn’t feel that way.” Nor is suggesting to call [child services] trauma-informed, or autism-informed. Unfortunately, Gail and her partner decided not to ask for help ever again because of the traumatic experience they had when they did request help: “Again, it’s silencing the margins. We tell them what our unmet needs are. It’s why we don’t. We Chapter 5: Findings 183 don’t get help. We’ll never ask for help again.” Gail added that not being able to access help: … hugely impacts our family and our parenting. Because without any support or understanding, to work through the tough things, we are all alone. We are stuck in the apartment without my vehicle. Every hour of the week, except for about 10, if we are lucky. Nobody can survive that. When you are on disability, and you are in each other’s faces, 24 hours a day, it’s not [my daughter], it’s not having any mental alone time. Today, I got lucky because a support worker doubled up and brought me to the apartment,10 blocks down, so I got to spend some time alone. Eight of the 18 participants discussed the intersection of mental health and disability and raising children. All of these participants reported often feeling like they have to appear typical and like super moms to anyone outside their home. For those who were living in small towns or rural location (e.g., Lily, Quinn, Aster), there was another level of fear and caution related to being in a small community where there are limited resources and often only one location to access resources. Aster felt as if going in and asking for help would put her at risk of being reported because the location of mental health services is visible and known in the community: After my second son was born, I really started to struggle emotionally. And, I was really terrified of asking for help because I was afraid that [child services] would be called because I wasn’t a good parent. Also, because I live in a small town. That’s where most of the services come from, so I would be seen at the doctor’s office. Every two weeks, you know, if I went in to see the therapist. So, you go, and you sit in the waiting room, and you always see somebody you know. Her fear of appearing not to be a “good mom” because she sought help ultimately resulted in harm: So, at that point, after my son was born, I started to self-harm again. I was really, really worried about what are they going to do if they notice this. So, I did start to see somebody, but I didn’t tell her much Chapter 5: Findings 184 of anything that was going on for me. Until about a year I had been seeing her. Aster discussed the difficulty of living in a smaller community and building trust with a therapist. She had concerns that if she was honest about her mental health, her therapist would assume that, as well as struggling with mental health, she was also a bad parent. Several mothers shared the importance of having a trusting relationship with their therapists, indicating this potential source of support while indicating concerns regarding surveillance. Lily’s story also illustrates the potential impact that oversurveillance can have on receiving appropriate support in a timely manner; particularly when medical support or other community workers make assumptions that disability related needs adversely impact parenting, especially needs around mental health and trauma. Lily experienced an assault in her workplace, and although she received help for her physical injuries, she developed PTSD related to the assault. When she reached out for help, she encountered surveillance of her parenting: I wasn’t coping well. I didn’t really get supports from my workplace. As a result, I was drinking a lot, like, a lot, a lot. I had early on tried to connect with some supports. I don’t think I recognized how big of an impact that that assault had had on me, but definitely enough to recognize that I needed some outside help. I probably needed some counselling. But what I found is, I would go to the counsellor, and I would be open about using alcohol as a coping mechanism, and immediately it was questions about my son. How was I looking after my son? What was I doing? Was he being cared for? Was he going to school? Was he doing all of these other things? … And it got really frustrating because, as much as I was completely falling apart, and as much as my son and my family saw me falling apart, the one thing that I was really strongly still doing was making sure that all of his needs were being met. You know? I found that a barrier to my, to my healing, to my health because I couldn’t get past that barrier. That barrier was being put up: prove to us that you’re caring for your son. Rather than it being about me. Chapter 5: Findings 185 Because the focus became about her son, instead of about her PTSD, she became frustrated and fearful that she could lose her son because she asked for help. Lily shared that she quit going to the therapist and continued to cope alone with alcohol until recently when she felt ready: “I’m at a place where I’m ready to look at that.” In fact, when she realized that her strong will could not address the PTSD, she sought help again. With her new counsellor, Lily firmly established the parameters of the relationship from the start. And that’s something that I, when I were recently started going to counselling, I put that barrier up really firmly. Right from the get-go. I said, look, I have supports for him. I have a counsellor through MCFD that I can access for specialized parenting. Because I do have to parent him a little differently than neuro-typical kids. I’m here for me and that’s what we are going to discuss. With this new therapist relationship, Lily was able to stop using alcohol as a coping mechanism and receive supports for her PTSD. For some parents, especially those with a law background, an inordinate amount of time is spent ensuring that in no way can their parenting be perceived negatively. Maia, who has a law degree and experience with child custody cases, discussed navigating living with a visible physical disability and having a support worker in her home for extended hours of each day: The direct funding program, I feel like, I’ve had the opportunity to get the help I need … I know from the other end what people will be looking at, I know what a child protection procedure looks like. I know the types of questions they would ask. I know how, you know, potential risks are and how they are measured. I’ve never really been in a situation where I’d be like, I’m not going to ask for that service. I guess I so meticulously did a parenting plan in my mind that that would never be an issue. Does that make sense? So, I’ve never been in a situation where there was a service that I wanted that I chose not to get, because I think that I’ve so overly thought Chapter 5: Findings 186 through the process before it happened. I would just never get myself in that situation. Preparing a parenting plan, having firm boundaries around the support care that came into her home, and her experience in child protection before becoming a parent helped Maia to navigate situations where she felt that she was being watched for fitness as a parent. As she explained earlier, these services felt very intrusive, but for Maia, using them created a sense of protection from child services by demonstrating that she could access resources to accommodate her physical limitations. The women described the pressure to access valuable accommodations while navigating and avoiding surveillance. Pearl, who is blind, and has a child with some difficulties, discussed her strategy to avoid child protection situations: I’m a parent third time around, I’m cautious where I go to ask for support. For his behaviour regulation piece. Like, I wouldn’t ever call [local child services] for, saying, my kid has regulation behaviours, “Can you make some recommendations? For parenting information for me and him.” Absolutely not. And despite the other options not being as accessible for her disability, she prefers them: I’m looking more towards [nongovernment resources and agencies]. And while they may not provide all their services in an accessible format, if it gets to what he needs, and helps us in some way, shape, or form, then that’s what I focus on. Couldn’t those agencies do better? Absolutely. Being through divorce or separation and having had previous custody experiences are other areas where disability and being a disabled mother can be used against the mother. Diane, who lives with bipolar disorder and fibromyalgia/chronic pain, had her disability used against her after she had an incident where her medications where not working for her, and she was hospitalized. Chapter 5: Findings 187 Yeah, I would say especially before I got sick. “I was worried, what if someone comes and takes my daughter away from me because they don’t think I can take care of her properly.” And then, that’s exactly what happened. When I was in the hospital for my bipolar disorder, her dad came and got the social workers involved, and they decided I wasn’t able to see her without another adult present. And, he got primary care of her. So, my conspiracy theory mind that was worried about it happening, it actually happened. And now I’m living with the consequences of that. It’s not the way that I would like it to be at all. It should have been, I was in the hospital, and then when I got done, we talked about maybe dad taking on a little bit more time, but it didn’t have to be that he was, like, he took 100% of the parenting. I pay him child support. Which is crazy. Diane now has a 50/50 custody agreement, however, this cost a lot of money for lawyers. She also discussed the importance of having a health plan ahead so that it will be more difficult for the other parent to change the custody agreement. [The organization that she volunteers with] were really surprised that when we made our separation agreement we didn’t put anything in there about health. If mom were in the hospital again, everything will go back to the way it was pre-hospitalization. So, there is always this never-ending worry that if I do have to go to the hospital again, I’m going to lose all my time with her again and we’re going to be back to me only getting to see her when I’m supervised. Although her new custody agreement does not have a clause for going back to how things were, her advice to mothers who live with a condition that can hospitalize them is to “put in an actual health plan that says, if mom goes to the hospital, when the psychiatrist says mom’s okay, we go back to how things were.” Diane’s wish was for less stigma and more understanding so that parents who live with a mental health condition can feel safe and empowered to ask for help when they need it and not to be penalized for making their health a priority. Many other mothers shared stories similar to these two, maybe not to the degree of the consequences, but similar in not feeling confident to ask for the help Chapter 5: Findings 188 needed, whether for themselves, or for their children, especially when mental health was involved. Pearl discussed how after losing her temper with her son, she experienced a child services intervention: And you know as a person with a disability, they are looking at you. You know? I remember one time I got so mad at my son, and I smacked him. Once. The counsellor that we were seeing, through the family counselling, called CAS. And they said, “We just want to let you know that we called CAS, and we told them that you said you slapped your son, only once. And they are not concerned about it because you’re talking to us about it. But we have to let you know we told them.” It took all I had to physically stay sitting in that chair instead of getting up and walking out. For Pearl, whenever possible, she brings someone with her to meetings with services or counselling. Rhea discussed how, as a blind mother, she felt particularly watched when her children were younger: Like, when they were little, I think it was more noticeable when they were babies and infants. That’s when people, I’d be out with them pulling the stroller, with my cane that’s when people realized, oh my God, that woman is actually taking care of that baby. Because it was obvious that I was. There was nobody, no sighted person around. The baby wasn’t walking, because as soon as the baby walks, then they think the baby does everything, right? It’s the most ridiculous thing. I’ve had blind parents that say, they will be walking with their three-year-old, holding her hand, they asked me for directions, and seriously, the person leaned down, and told her three-year-old the directions. So, that’s how bad it is. For Rhea, this is part of being blind that she finds most frustrating, that of being overlooked and of the necessity to constantly educate people on alternative techniques, and what blind parenting looks like: Honestly, that’s how bad it is. And it’s constant. You’re constantly educating people. I had people ask me how you change diapers? I mean, that’s like the easiest thing in the world to do when you’re blind. It’s all tactile. And using your nose. What is visual about that? I’m constantly telling people, well, we call them alternative techniques. And a lot of the alternative techniques that we use are Chapter 5: Findings 189 equal, or sometimes superior to the sighted techniques. Not all of them. Some of them aren’t. You know? But they work just as well. Like, I had bells on my kids when they were little. And I could tell where they were, always. I knew exactly what toys they were playing with. Always. I knew … and luckily, I had other blind parents, mentors. Several times through her interview, Rhea discussed how important her community of other blind parents and mentors are to navigating difficult systems. Ophelia discussed the impact that fear of losing their children had on their health and support needs: I feel like as a disabled mom you’re just watched. It’s different. You are out and about with a cane. Children are looking at you. Parents are looking at you. Okay, this is a disabled mom. [ … ] Is she able to do it on her own? So, they’re watching a bit. I think just in general, yes. I’m nervous to ask. Even holding the door, you don’t when I ask somebody to hold the door. You just hoped to God they’ll just do it for you. Yeah. For Ophelia, even the small request for someone to hold a door open causes her pause because she is afraid the other person will think she can’t take care of her children. For Pearl, not feeling confident in asking for services due to previous experiences caused her to worry that her son with autism might be missing out on services: Considering how many times I’ve been investigated, I’m very leery. Of asking for help. The more you ask for help, the more see you. I’ve been very leery on it. … there’s a whole bunch of things through MCFD, for the autism community. And, I’ve been a little bit leery on asking for those things. Such as, there was one program that I wanted to go for with my son, but I decided not to. As described above, there are real life implications for disabled mothers who are afraid to ask for, or who delay requests for supports because they fear oversurveillance, or negative judgement of their parenting. These implications can Chapter 5: Findings 190 affect their children having access to resources, and also can impact their own health and safety. For mothers like Lily, Aster and Diane, their fear of child services interventions resulted in their mental health situation deteriorating, and in the case of Diane, she lost custody of her child for a time, and after great expense, now has shared custody. Childcare and Schools Interacting with institutions such as schools and daycares is often an area of difficulty for mothers with disabilities. Again, accessibility is often an issue, and attitudinal barriers and oversurveillance are prevalent. Print materials and forms are often a barrier from applications to programs to report cards for both parents who are blind or who have limited vision as well as parents who have learning and processing disabilities. Rhea asserted that the biggest barrier was access to materials related to her children: That’s probably been the hardest in terms of accessibility. Dealing with printed material that I can’t read, or websites that aren’t accessible to my screen reader, that don’t work properly. [ … ] The biggest challenge for actual accessibility for blind people [is] access to information. So, there have been challenges over the years if you’re supposed to fill out a form for the kids’ field trip. Things like that. It’s not accessible to me. Or, they’ll send home a lot of printed material. That I can’t read. So, I just have to negotiate with the teachers to send me stuff by email. There’s always been stuff like that. That’s probably been the hardest in terms of accessibility. Dealing with printed material that I can read, or websites that are accessible to my screen reader, that don’t work properly. Selena and Pearl both expressed similar frustrations as Rhea, that of receiving inaccessible materials, and not being able to independently review typical forms and report cards. Continually having to advocate for access is exhausted and many mothers, including Rhea discussed the need to prioritize battles: Chapter 5: Findings 191 The hardest thing with that issue is that you are constantly having to push it. It doesn’t just happen. Especially when you’re a parent, you’re already exhausted. With everything else they are doing. Sometimes you just don’t have time to make them obey the law, or whatever. And it really shouldn’t be up to us to do it. But you know how it is. I have to pick my battles. As with earlier sections, the majority of the parents in this study felt that they had to continually educate and inform people on how to create accessible spaces. Regarding participation in programs for younger children, including early years and day care, quite a few of the women talked about barriers from attitudinal barriers to physically inaccessible spaces. Maia and other moms talked about was feeling excluded around other parents: And I found, for example when I take my son to swim lessons at the pool, there are a lot of situations where you maybe developed mom friends, or something. But I never do because I always have a worker with me. So, nobody talks to me. As much. I find, my friend also said that when you have your worker with you, it’s really fucking hard to make mom friends. Maia went on to share that it often felt lonely when she was doing activities with her son. Selena also expressed feeling excluded around other parents: I feel very judged by other parents. So, the teacher will say, have saved the seat for you in the front row, and I just feel, [other parents think] “why does she get to sit in the front row?” [ … ] And in my mind, I’m just a mom who can’t see very well and the teachers are being nice. And I feel, you know, unfortunately because my disability can be invisible, that is something that we haven’t quite figured out. Rhea shared feeling excluded when she would encounter other able-bodied mothers when at school activities. And because she is blind, she also shared that often her anxiety would leave her thinking the other parents were deliberately excluding her. Mothers who are autistic discussed feeling excluded from activities their children were doing because they experience sensory overload. Frida explained: Chapter 5: Findings 192 My ex-husband he does the [activities]. He does a lot of stuff. He does all of that stuff with them. Because they’re not accessible. Like Canada Day. Community events. All that stuff. I can’t. I’ll come to important things like ceremonies or concerts. Something that’s marking the passing of time. But, I can’t. Although she knows this is the best balance for her children, she felt excluded that many activities are not sensory friendly. Nina experienced a number of issues with the daycare her son attended: I worried about it in the context of that complaint at the daycare. Because there was a childcare worker at that place that I think had some strange feelings about me being a mom because of my disability. And so, I worried a little bit about being vulnerable to that kind of scrutiny in that context. She did this weird thing, where she was trying to say, to me and to my husband, that I was bringing my kid in with a dirty diaper. And I wasn’t. Like, he was clean and changed, and whatever, when he was dropped off. But, for some reason, for me in particular, she really wanted to make this point. About me being a bad mom, somehow. That I was dropping my kid off with a dirty diaper, and then they were having to change him right away, and I was terrible. It was hard negotiating that relationship with her, while my kid was in her care. And that having this additional complaint made me concerned. If anybody was going to do that, try to orient the system to oversurveilling me, it was going to be her. So, I was a bit concerned. Despite knowing that her son was fine, and that there was nothing in the complaint that indicated she was negligent, Nina felt that she was being targeted at her daycare due to her disability. For several mothers, childcare was a point of discrimination on multiple occasions. Kadence discussed some of the issues she had, including having to navigate inaccessibility within centres. One that both she and Nina discussed were rules about where and how strollers should be stored when they drop their child off. Kadence discussed how the rule for strollers was actually danger for her child: Chapter 5: Findings 193 I feel like a lot of childcare spaces are not accessible. Or almost every child care related space that I went to has said, “Oh, we put strollers in a different location.” I very consistently said, “Okay, we will not be doing that.” [Laughter]. I can’t push my daughter around the street, like it’s not safe, there are too many other factors, when we are inside at a children’s centre, that is how I’m getting her around. It’s been fine when I said no, thank you. I literally say, “No, thank you.” People are often surprised. They don’t insist that I do it, or not go there. Nina had a similar situation where the staff would relocate her son’s stroller to an inaccessible location and she would be unable to retrieve it on her own when she picked up her child. After ongoing struggles to have accommodation, things finally came to a head: One day I was literally in tears, and I was like, I’ve asked you guys, and I’ve asked to be accommodated, I have a right to ask you for this. So, leave my stroller at the back. Or, we are really going to have a problem. And the guy said to me, “We haven’t decided what to do about you and your situation yet. We will let you know.” For Nina, this was the breaking point and she and her husband threatened to filed a human rights complaint. The daycare offered two solutions, neither of which were ideal, but she felt pressured to choose one of the options: But that was not great. That was not accessible really. That could’ve been solved in any number of ways that did not come to a head. To threatening a human rights complaint. I’ve got a friend whose kiddo is also there, and she has a visual disability, she’s asked them for years just to put high contrast strips on the stairs, so that she herself can take her child up, and drop her kid up at the daycare. And they haven’t done that. They haven’t been able to find the time to do that. Kadence faced a difficult situation when she was attending an interview for a daycare space: I know at the daycare, my daughter’s daycare, when we went to the daycare interview, it was funny. I actually laughed. I couldn’t hold it back. The daycare interviewer was like, “Do you mind if I ask what’s going on here?” Because I had a doula with me, a black female Chapter 5: Findings 194 doula and myself, and the doula was like, “I am a doula. We are not together.” And I was like, that was what was going on. And she was like, who owns the baby? I was like, I own the baby. [Laughter]. Another policy that she has encountered that does not make sense for a wheelchair user is the shoe policy: that you wear inside shoes and outside shoes. So, initially she said, “Can you disinfect your wheels every time before you come?” And I said, “No.” And then she was like, “What should we do then?” I don’t know. You can ask somebody about the policy. If it helps, I am pretty sure if I use wipes on my wheels, it’s just going to spread dirt all over the place. And I was like, “Wheels are not like shoes.” But, last week, they had their accreditation, and someone literally came out and wipes my wheels. [Laughter]. And I was like, “What on earth? Whatever. [Laughter]. If you need to do that for accreditation, whatever. Who am I to stop you? [Laughter]” For both Nina and Kadence, there was a ridiculousness about policies that could not be adapted for a parent with a disability, however, as ridiculous as the policies seemed, there was a real concern about losing their childcare spot or of being reported to child services if they were too “difficult.” Nina shared the long-term impact of conflict at the daycare and how stressful it was to interact with individuals who clearly had ideas that women with disabilities should not be parents: “There was a childcare worker at that place that I think had some strange feelings about me being a mom because of my disability. And so, I worried a little bit about being vulnerable to that kind of scrutiny in that context.” However, sometimes these actions and microaggressions were difficult to clearly identify and name. Some mothers shared feelings of exclusion and barriers to participation in school and extracurricular activities with their child(ren). For Gail, one concern was lack of reliable transportation. Gail explained that there were not enough accessible activities close to where she lives for her to bring her child to. Similarly, Diana Chapter 5: Findings 195 expressed some regret that her daughter could not be in more activities because of Diana’s disability: My daughter doesn’t participate in as many physical activities as other kids because I can’t be out in the cold weather, in the field in the middle of winter, cheering her on. That would break me. I would be in bed for a week just from the cold. I feel that sometimes she hasn’t had the same opportunities that other kids have had because I can be as active as the participating parent. Physical activities. Her personality has become more creative and more verbal, and less sportsmanlike. I do think that that has a lot to do with the fact that I’ve been living with a disability. For Diana, there was a sense of loss because her daughter was limited in activities. Other mothers, like Selena discussed feeling like she was excluded from her children’s activities, not because she wasn’t present, but because she could not see them playing sports, or performing in plays. For participants in this study, childcare and schools were places where multiple barriers and negative experiences occurred. As described above, some mothers reported relying on their partners when situations became difficult (e.g., Frida, Nina). And others, like Rhea, Pearl and Selena, rely on friends, family or partners to help with inaccessible documents. Housing Having safe, accessible, affordable and appropriate housing to support their parenting was a concern that many women spoke of. For some women who had the means to build homes that would suit their needs, this was the best solution. However, other mothers struggled with balancing their finances with accessibility needs. Chapter 5: Findings 196 For participants, like Selina and Heather, who were able to finance purpose-built housing, this was the best solution. Selena and her husband built their home to accommodate her needs: “Our home was purpose built. We built our house. We built it with all of our needs in mind. But, I would say, my specific needs most in mind.” Both Selena and her husband were employed at the time and able to choose to build in a location that met many of her needs, and allowed her some independence in her neighbourhood. Heather also built her home, however, as a single parent, she had to make different choices about location in order to create the home she wanted that could accommodate her disability and a child with a disability: I mean the sheer fact that, the reason why I live here is because it affords me this house. And this house is amazingly accessible because I built it from scratch, and I designed it myself, and it’s huge. And, I can afford it. Because we live in the middle of nowhere. If we lived downtown [in a large city], would it be more accessible? Yeah, but could I afford this house? No. Then we would be in a shoebox, which would be less accessible. We would be living in a shoebox. [ … ] Usually either it’s your home is accessible, or your city is accessible. Like everything is a tradeoff. Honestly, like this house, I mean, just for the bathroom I have for my daughter, it’s worth living here just for that bathroom. (laughter) you wouldn’t get that bathroom in the city. The four participants who lived in smaller or rural communities at the time of the interviews shared similar sentiments: that living farther from a large city allows them to have a larger home. Other mothers talked about having to move for accessibility reasons. Gail, who had to move to accommodate loss of mobility, expressed concerns that if she should require a different mobility device in the future, her home might not be accessible. Disabled parents require more than a bachelor or one bedroom apartment, and this extra space creates an extra level of of barriers, including there are very few Chapter 5: Findings 197 accessible affordable homes to meet the needs of disabled parents, and having extra rooms increases the expense of housing. Further, for disabled parents on disability pensions, or for those who are single, this extra cost can seem insurmountable in a limited market on a limited budget. Balancing accessibility with budget was discussed by many of the mothers, and for some participants, they discussed trying to find a medium ground between accessibility and affordability. Both accessibility and affordability have implications for the women’s mothering. Maia talked about how she has had to improvise and find creative ways to make her current home work: It’s not great. It’s more accessible than [the last place I lived, in a basement]. You can bring a wheelchair inside my house. There are no [automatic] door openers to the doors on the outside. So, that’s been a pain in the ass. The bathroom isn’t accessible at all and neither is the kitchen. So, technically, you can bring your wheelchair in but you can’t really use it. In the house in any kind of way. So, I generally kind of get around by holding onto the walls, or using a walker, or a cane. Although Maia was conflicted about living in a less than ideal situation, she found ways to in her home in order to live in an affordable home. Kadence, Ophelia, and Gail all required adaptations to their housing to meet their accessibility needs. Kadence, who uses a wheelchair, needed adaptations to her bathroom to be able to access her shower. This work has still not been completed and she expressed concern: “My building … is far more accessible than anywhere else I’ve lived. But my apartment unit … I need a roll in shower for myself and my daughter, so the apartment has agreed to do that. It’s just a question of timeline.” Chapter 5: Findings 198 Three of the mothers needed adaptations to meet their accessibility needs, and accessibility needs to support their mothering activities. They each shared how they balanced accessibility with expense, and in the case of the two who were renting, with the relationships they have with their landlords. Unfortunately, in the case of Kadence, she was waiting on accessibility and left to deal with her inaccessible shower—for both her and her daughter. Rhea discussed how she managed to get into provincial housing where rent is based on one’s income and is not market driven. While waitlists are long to get into provincial housing, Rhea felt that she was able to move into the housing as quickly as she did because she is blind. She spoke positively about her housing: “a three-bedroom. It’s pretty nice … and it’s close to the bus route which is really important for me.” Rhea, Gail and Kadence mentioned choosing carefully which battles to have for accessibility. For these participants, maintaining a cordial relationship with their landlords was more important than battling for full accessibility. One last issue that came up with Gail was the situation with her and her co-parent’s provincial disability benefits rules, which adversely affects people who are on disability benefits who move in together. Upon moving in together, benefits are lost or reduced. There is an assumption that a partner can afford to replace and cover all the same benefits and income that provincial disabilities cover. Gail, who co-parents, lives in a separate space from her child’s father. She said it quite plainly: “And, if we move in together then we both lose money off of our disability [stipends]. So, we are keeping both places.” Although they were making it work for them, there Chapter 5: Findings 199 were difficulties in getting between the two places as they did not own a car, and they sometimes struggled to make the situation work fully for them and their child. For the participants in this study, accessible housing that accommodated both their disability and their parenting needs were a balancing act of choices. As demonstrated above, participants who were both employed and/or had a partner, sometimes the best choice was to purpose build a home that met their family’s needs. However, for those on limited incomes, often accessibility had to be weighed carefully within a budget. All the participants in this study discussed how they balanced where they lived with other needs, such as medical or transportation, or ready access to medical, employment or other supports. And finally, for one of the participants, not being able to live with her co-parent because they are both on provincial disability pensions had ramifications on their shared parenting, exacerbated because neither of them drives. As with other needs discussed in this chapter, all decisions were made by weighing out the options and budget that each parent is dealing with. Transportation For the mothers in this study, transportation was a complicated barrier to navigate. Transportation needs are sometimes defined by an individual person’s disability, and other times they are defined by the ability to afford and maintain an accessible vehicle. Again, often costs are balanced and negotiated based on finances, location, and priorities. Public transit comes in two forms: door-to-door accessible transit, and regular public transit that includes buses, trains, streetcars and subways. For women who Chapter 5: Findings 200 used one of the door-to-door accessible transportation services (most often located in cities), taking a child, especially a young child was often fraught with barriers. One barrier was timing. These services need to be booked ahead of time, but do not always arrive at the scheduled time. This translated to barriers for women who had to navigate multiple stops on a trip: for example, childcare or school drop offs for their child, and then a second stop at work. Attempting to coordinate public services for these typical morning and afternoon schedules of most parents becomes a complicated process for disabled parents. Ophelia shared some of her frustrations: 50–50. It’s literally a catch 22. Yes and no. Some days para transport was so great. They were on time. Or early, I can’t believe it when they’re 10 minutes early. Oh my gosh. And other times I’ve had an hour and a half where they’re late, and you’ve just finished a workday, you’re in pain, and you’re waiting an hour and a half, phoning them say where are you? I’m a 10-minute drive home. It’s exhausting. That’s not accessible. Kadence talked about how difficult it is to navigate these public accessible transportation systems as a mother with an infant. She shared her experience as a wheelchair user travelling with an infant: Currently, if I’m with my daughter, I take Wheel-Trans. But that seems almost a little bit ironic because then people are like, “Oh, it’s so great that Wheel-Trans is accessible.” Able-bodied people that don’t understand the system. [ … ] Wheel-Trans, so [when] my daughter would’ve been two months old, and I just wanted to take her to her doctor’s appointment. And Wheel-Trans wrote me an email saying that I could only travel with her on Saturdays. [Laughter]. Because they have this companion policy on Saturdays. And I can take an extra person. [Laughter]. Because I needed an attendant, especially in that situation I needed an attendant. So, that was not okay. So, although the Wheel-Trans service was a better choice for Kadence to travel with her child and wheelchair, the way the system was set up did not take into account Chapter 5: Findings 201 the needs of a disabled mother. Another barrier Kadence had was being unable to book a trip online with her daughter: Also, I wasn’t able to book her online. Typically, I have, I know my friends have a history of booking trips online. And because there is not a way to say that you’re taking a stroller, or you’re going to be with an infant, I had to call in every time. And I would get responses like, “Oh, you’re number 74 in the queue.” I’m not even making up that number. I was, for real, it was close to 100 calls ahead of me every single time I called. It’s things like that. This is a ridiculous legal situation. Further, she encountered numerous times when a particular policy of the transportation company led to cancelled trips. Another policy creating a barrier is related to rules regarding strollers and car seats: You cannot have the stroller on Wheel-Trans according to them. Unless it’s an approved stroller. Which they were refusing to say what an approved stroller was. They disallow, altogether, car seats. They would not allow car seats. There were several back-and-forth conversations attempting to remedy the situation, and finally the stroller was approved. That said, despite regularly using the service, she encountered scrutiny of her situation and her right to be in the vehicle with her daughter. She shared what happened earlier in the day just before our interview: Like, even coming home today, the driver was like, is this all approved? Are you sure? Should I call my supervisor? Which is stupid because I shouldn’t have to do that every single time. And, literally it seems like every other time, there is some issue with it. And the drivers won’t even read the notes. That management says is on file. She also encountered a number of intrusive interactions with the transportation company: “Three staff came to my apartment twice, they were waiting downstairs at the apartment building, just to tell me that I wasn’t going to get a ride. And they Chapter 5: Findings 202 weren’t providing a solution to the issue.” Finally, Kadence explained, the rules continually change without notice and without cause. And, because the company was not willing to adapt their policy to a mother with a growing child, and because the rules continually change, she was fearful of losing her access to transit: Sometimes, depending on who I am talking to, Wheel-Trans will say, really, there’s enough issues here that you need to travel with an attendant, which is not true, it’s not a solution to the problem, the problem of a lack of access. And should they require that, of me or anyone else, that would, it would just not work. In my life. I don’t want it to escalate to where I don’t have access to any kind of transit. In fact, one of the biggest concerns around lack of reliable transportation was the fear mothers had around child services. Kadence reflected on this saying: “I was legitimately worried that me not being able to get to the doctor’s appointments would result in an apprehension.” Ophelia discussed one other issue that many mothers noted with regard to these services, that of isolation and of spending most of the day connecting to rides and waiting: There were barriers, there wasn’t much option given to me in the way of, you’ve got para transport, that’s not doable. I’ve waited hours for it so I don’t want to take it half the time. To go to the mall and back. Your day shot just by waiting for para transport. So, I found that really hard, when I didn’t have my driver’s licence. I felt very secluded from reality. I was just stuck at home. Very stuck at home all winter. I’m glad that got my driver’s licence again. Another concern Rhea discussed was the additional charges for transit when you have older children. Each person must pay for a ticket; even if the mother has a pass that covers her fair, she must come up with money for her children to travel with her. For individuals on a fixed income, this can be difficult, if not impossible to Chapter 5: Findings 203 do. This highlights the intersection of poverty, disability, and access to transportation. For some parents, owning a vehicle is the only option, especially for parents living in rural communities, where public transportation is limited or nonexistent. This can be financially difficult, especially for single parents. Lily and Gail both discussed a policy change that occurred in British Columbia that had negative consequences. Previously, if you had a reason related to your situation (e.g., your particular disability) and you could not use public transportation, individuals on provincial disability benefits could receive a yearly benefit that would go towards transportation, but this changed. Gail explained: I used to get the special Ministry fund, for not being able to take the bus. It was close to $800 a year. They got rid of that. They changed it to something like $52 a month. Which is less helpful. Because a big chunk was easier to, like you could buy a beater car and a few months insurance with it. Then they took that away. That was called the special transportation subsidy. Both in the situation of parents who have their own vehicles and those who rely on public transit, policy changes had profound impacts on the mothers who were interviewed for this study. Nina talked about the difficulty in navigating public transportation in a large city that is still not accessible, especially related to public transportation: So, when I was just getting my son around by stroller, I became very aware, as everybody does, all of a sudden, there are places that you can’t get into. I stopped trying to get on the streetcar because I always had to rely on somebody to help me get the stroller up and down. And the drivers were inconsistent. Some would help you, and some were extremely rude about it, and wouldn’t help you. And I needed help to get my stroller up and down the stairs. So, I ended up living in a very small, walkable area because I didn’t want to have that unpredictability of having to deal with somebody that was not Chapter 5: Findings 204 helpful being that day. The subway station that was near me was not accessible. So, I couldn’t really take him out to do fun things, outside of our neighbourhood unless I could walk to them. For Nina, these limitations have a profound effect on where she can travel with her son. Finally, Selena touched on an issue around transportation that other mothers noted, that is independence and logistics. For many people with disabilities, especially parents, it is nearly impossible to be spontaneous: Logistics. Getting around. Being dependent on people for rides. Being a very independently minded person, but having to be dependent. Especially when you live more suburban. You need to ask mom to go to Costco. Your husband to go to the mall. You know? You can’t really just get up and go. For me, the logistics of a big family and a full-time job, can be frustrating. If I just want to pop oh, I forgot someone’s gift, it’s not as easy as me popping out to the mall. I need a ride. If the person, if the only other adult in the house is the one giving me the ride, then we are to bring the kids a long, there’s always, there’s not a lot of spontaneity in my life. I think, in another life, I would’ve been more spontaneous. I think I’m spontaneously minded. But have never been a spontaneous person due to circumstances. Autonomy and independence while parenting with a disability was an area of tension for Selena. Ophelia discussed the challenges she had when she was first disabled: The first year and a half I did para transport. All the time: for work, doctors’ appointments, rehab, and when I was in hospital, coming home on the weekends. I was only able to come for an eight-hour time [because of para transport limitations]. I was losing a lot of time at home. I relied on friends. She now is able to drive and shared that she now feels more confident and independent in caring for her son, and in going to run errands with him. Overall, in relation to transportation, financial independence was a key aspect of independence and safe transportation. However, as indicated above, changes in Chapter 5: Findings 205 policy impacted the women, and often, public transportation was not accessible for them to navigate with their children. Transportation was a negotiated area where the participants weighed cost, effectiveness, accessibility and safety. Conclusions The experiences of raising children as disabled women have been complicated and fraught with complex systems and barriers to navigate. The embodied experience of navigating all aspects of parenting while disabled changes over time. For most participants, the most challenging times were when their children were younger and most dependent. In particular, there were challenges for women with physical disabilities using equipment in public spaces that were not designed for accommodating their needs. Housing and transportation were two particular areas where policies and environments became new barriers at the intersection of mothering. Housing was a particular issue for women who rent and/or who live in public housing. Accessibility in spaces where parents and children interact, such as childcare and schools was a prominent issue for many women (e.g., Nina, Maia, Selena, Kadence), regardless of their disability. These were also the areas of increased surveillance and often areas where women felt the greatest reluctance to assert their right to be accommodated. Balancing and navigating rights with remaining effectively invisible, or under the radar was something Selena, Iris, Gail, Frida and Aster struggled with. Women who experienced home visits and interventions from state officials (often social workers) reported feeling traumatized, impacting mothers’ seeking help or services Chapter 5: Findings 206 afterwards. Every mother discussed not asking for services or supports at different times in raising their children because they feared negative interventions. Disabled parents face daily impacts of discrimination, bias, and negative assumptions about their bodies, their rights, and their ability to effectively parent. Further, beyond attitudinal barriers, participants articulated the regular barriers they face from a physical, accessible perspective. Families were impacted regularly by uneven definitions of disability, uneven distribution and access to resources, systemic ableism written into laws and policies, irregular education, and a disregard for accessible information. Across the lifespan, women reported consistently that there are barriers to becoming mothers. The five themes of embodiment, accessibility, relationships, oversurveillance, and trauma explored within reproductive and sexual health milestones demonstrate where gaps in education, appropriate resources and supports are consistently denied to disabled women and girls. How women described these may differ but consideration of these realities in how reproductive and sexual health rights were approached could have mitigated some of the barriers for these mothers. Accessibility was an enormous barrier for women in all aspects of their lives. From early childhood access to information, through young adulthood and decision making, to pregnancy, labour, delivery and postnatal experiences right through and into raising children, women consistently faced barriers to accessibility. For participants who have communication disabilities, physical disabilities, or sensory disabilities, every single one discussed challenges they faced with Chapter 5: Findings 207 inaccessible information, to arriving and discovering that the space for medical interventions was not accessible. Attitudinal barriers often created further barriers to informed choices, for women who have an able-bodied partner, it is clear that this was an asset to navigating access. Single parents, those with a disabled partner or those with a partner that was uninterested in the experience, the experience of these spaces was a further barrier. For women who have partner, that relationship was critical in navigating the reproductive journey. Nearly every interviewee discussed having an ally or champion (positive relationships) at some point in their life course who gave them confidence to consider becoming a parent. Often, when faced with other barriers, biases or discrimination, the words and/or support of that individual(s) helped the women to continue on in their reproductive journey. That said, the long-term impact of negative messaging and experiences also weighed on women during the time when they were making decisions on becoming a mother or not. Oversurveillance was certainly felt by many women in this study across the lifespan. Participants in this study were aware of being watched constantly. This feeling of being watched and concern that the state may take away their children put women at risk (and their children). Chapter 6: Discussion 208 Chapter 6: Discussion Connecting Women’s Voices to the Research Overview Informed by a human rights framework, this research explored disabled women’s reproductive and parenting experience. In this chapter, I first discuss what was learned by using a materialist feminist theoretical position in interpreting women’s narratives. I then contextualize this research project and discuss how this project advances and elaborates on current literature. Next, I discuss the methodology that I developed combining two existing methodologies—DRPI and retroactive life history—and how this new methodology contributes to current research. I then discuss how this research, by framing the project explicitly within an emancipatory human rights position, builds on earlier disability movements and research and offers unique ways of contextualizing the experiences of disabled mothers within current, often ableist systems. In particular, I focus on the role of voice, representation, embodiment, and identity and activism. Significant findings in this research include not only specific human rights concerns in a Canadian context, but also the important ways in which disabled women build community, establish trusting relationships and, navigate choices to counter ableism and inaccessibility in order to create and have a family. Sometimes in human rights work and in research, the focus is directed towards barriers and discrimination—which are urgently important—and yet, learning how each of these women navigated these hurdles has had a profound impact on me. Knowing that even one positive teacher, medical professional, or social worker can build confidence in young women is significant. Further, participants in this study Chapter 6: Discussion 209 repeatedly identified how crucial it is to have access to age-appropriate, disability-specific, truthful information across their lifespan. The more information (sometimes not gleaned until a second pregnancy), the more confident women said they felt in their ability to care for their own health and their children. Another significant finding in this research was the negative impact of oversurveillance, and the fear of losing custody or of being seen as “bad mothers.” The fear of seeking help for physical or mental health supports resulted in serious situations for several participants; these outcomes very well might have been mitigated had women felt confident in seeking supports and services earlier. Framing the Research with Human Rights: Connecting to the Literature This study was framed and grounded within an understanding of disability rights that argues that all citizens, including people with disabilities, have a right to enjoy all aspects of the human experience, including the right to have a family (UN General Assembly, 2006). I believe that the model or understanding of disability one holds impacts the results of a study and the future impacts of that research. For example, below, I will discuss how health research about pregnancy and disability that is grounded in a medical model of disability reproduces ableist assumptions about disabled parents. Further, I will argue that many policies and programs set up to provide support for disabled people are grounded in charity models of disability, with gatekeepers who decide who can benefit from these programs and at what cost. Generally, research conducted about disabled women and their reproductive experiences use a medical model of disability (e.g., Ofir et al, 2015; see also Chapter 6: Discussion 210 Chapter 3 of this dissertation), a social model of disability (e.g., Thomas, 1997), or occasionally, a human rights model (e.g., the (Re)al Productive Justice Project [n.d.]). Women with disabilities have a recognized legal right to make decisions about their reproductive health and sexuality (Canadian Charter of Rights and Freedoms, 1982; UN General Assembly, 2006, Article 23). In addition to domestic and international treaties, disabled people in Canada have asserted and won their rights in the courts (Eldridge v. British Columbia, 1997; E. (Mrs.) v Eve, 1986). However, as with prior research, women in this study reported a continued misalignment between law and practice. Policy and practice continue to impose and reinforce stereotypes, biases, eugenics ideologies, and barriers to the path of building a family that able-bodied individuals assume (e.g., Mykitiuk & Chadha, 2011; Track, 2014). A focus on disability as “risk” perpetuates harmful stereotypes that reinforce ableism. Further, some researchers have argued that a biopolitical approach to research, without an awareness of this ableism, and what Saltes (2013) has termed “disability surveillance” (p. 56) perpetuates the stereotypes and reinforces exclusionary practices. Saltes argues: When disability surveillance is carried out in ways that pathologize and exclude people with impairments in order to limit access to resources and/or citizenship, disability tends to be defined in terms of a functional limitation and people with impairments are seen as those with non-normative bodies that pose a “risk.” (2013, p. 56) Chapter 6: Discussion 211 Saltes argues for her stance of surveillance and biopolitics in multiple areas of citizenship, including immigration, and I would argue that her argument on the outcomes for people with disabilities in multiple areas of citizenship, including the right to have a family. She goes on to write: Disability surveillance that operates on perceived notions of risk are carried out under biopolitical rationalizations that aim to promote the health and prosperity of the population through social sorting processes that involve identifying and categorizing “abnormality” through the collection of medical data. (2013, p. 56) One has to only look at the list of health research about disability and pregnancy to that recognize the focus is almost exclusively on risk in this field (e.g. Barnabe et al., 2011; Ben-David et al., 2008; Chakravarty et al., 2006; Ghafoori et al., 2020; Gleicher, Weiner & Vietzke, 2006; Kaprara & Krassas, 2008; Mitra et al. (2016); Reed, Vollan & Svec, 2006; Rusner, Berg & Begley, 2016; Smeltzer, 2007; Tincani et al., 2005). Saltes argues for the importance of research that looks closely at disabled experiences and that has the potential to address inaccessibility with the paradox that often that research is used to reinforce ableist norms. She “problematizes normalization and definitions of disability grounded in medical discourse for its legitimization of the perception of abnormal that is used to rationalize exclusionary biopolitical agendas” (2013, p. 56). I further argue that this medical model of disability, and the research conducted within this model that perpetuates the belief of inherent risk in relation to disabled pregnancy, is part of this biopolitical agenda that recreates perceptions of disabled bodies as risky. Chapter 6: Discussion 212 Disabled women, more so than nondisabled women, enter a discourse of risk that goes beyond their own knowledge of body (Thomas, 2008). In discussing this medical discourse of risk to self and/or risk to fœtuses, Thomas wrote: The women could not avoid a close encounter with a medical discourse which has at its core the belief that if there is a risk of abnormality, or the risk of worsening an already abnormal bodily condition, then steps must be taken to avoid it; genetic counselling outlining the “risks,” or the option/recommendation of termination, should be given to those parents who are “at risk” of producing a baby with a serious impairment … or “at risk” of worsening their condition. (2008, pp. 504–505) Similarly in this study, medical attitudes of risk were often used when women met with medical staff, and yet, often when pressed, medical professionals were unable or unwilling to explicitly define these “risks.” The impact of surveillance, assumptions, and exclusion on disabled women was prevalent across the lifespan of the participants. Disabled women know that within the systems they encounter, they are too often seen as a risk “without examining larger contexts such as poverty, access to healthcare, employment, education, parenting supports in a community, housing, etc.” (Malone, 2014, p. 2006). Given this, women and families experience difficulties because they remain silent rather than ask for help in order to avoid surveillance and scrutiny. Moreover, the fear of retaliation for not living up to idealized standards of “mother” silence many disabled women. Specifically, women in this study discussed: hiding mental health issues until they were actually causing harm within their family; living in inaccessible Chapter 6: Discussion 213 homes because of fear of oversurveillance in the home; and experiencing dangerous situations with transit and travel. Further, many women talked about not having access to accessible material to assist them in making decisions about their health or care of their child. This included women with learning and print disabilities and women with vision disabilities. I also assert, that women were also at risk when they consciously decided to “pass” as nondisabled and not ask for accommodations so as to avoid oversurveillance and/or judgement. Models or theories of disability contextualize how disability is understood. The various theoretical models of disability provide a way of understanding how different research is conducted; how programs and services are created and delivered; and, how disabled people experience life and the full range of human experiences. These theoretical models of disability provide various lenses through which the experience of disabled mothers in contemporary Canadian society can be explored and critiqued. Further, framing experiences of disabled mothers in the context of human rights and legal obligations, explicitly offers a tool by which activists and researchers can challenge discrimination and barriers to full citizenship. While numerous models and theories of disability exist, I argue that three models of disability are most often reflected in policy development and in program delivery: specifically, the charity model (Clare, 2001), the medical or individual model of disability (Clare, 2001, Michalko, 2009; Oliver, 2009), and the social model (Oliver, 2009; Shakespeare, 2013). Many of the programs, services and policies that participants in this research encounter are embedded in both charity and medical models of disability, and occasionally in social models of disability. Chapter 6: Discussion 214 A model can help unpack how a policy or program impacts the experience and outcomes for someone with a disability. As suggested by Oliver (2004), “Models are ways of translating ideas into practice” (p. 19). For example, despite access to services such as public, accessible transportation being seen as a right, the system itself is set up as separate and “special” for people with disabilities, and I would argue, it is run as a charitable option for people with disabilities. Accessible public transportation was a site of contested rights for disabled mothers. The bureaucracy surrounding access to paratransit transportation, such as Handidart in British Columbia or Wheel-Trans in Ontario, was an enormous hurtle for disabled mothers who discussed attempting to access the service. For participants in this study, barriers existed including difficulties in travelling with their infants without an attendant; booking transit with their infant; booking multiple stops to deliver their child(ren) to daycare and then go on to work or school. Another aspect of the paratransit programs is that they do not run on a schedule. Participants discussed how regularly paratransit is late. This can greatly impact parents who may be charged fees for being late picking up children, or who lose income if they are late to work. As well, paratransit programs require individuals to book their trips days in advance and often hours outside of the times they need the service. Finally, one of the participants, a single mother, reported that she has repeatedly experienced oversurveillance into her access to the service, including being told that she must have an “approved” stroller for her child, and that she was not allowed to hold her child on her lap, but would require someone to travel with her. Clearly, these are not typical experiences of individuals accessing public transportation. Overall, Chapter 6: Discussion 215 transportation was an area where many participants encountered barriers that able-bodied citizens would not. These experiences, in Canada, are similar to those in the United States (Jacob et al., 2015). Able-bodied Canadians would never consider that their public transportation would regularly be late, or that it would only operate at certain times, or that you would have to book it days in advance. These programs that run under the guise of transportation and inclusion for people with disabilities operate not within a human rights framework, but rather a bonus for people with disabilities, a charity. In this study, there were clear differences in women’s experiences and outcomes related to financial independence, age, and partner status. Despite Canada having a system wherein everyone has a right to access many medical and social resources, there were differences between accessing services such as IVF in a private clinic versus a publicly funded clinic. Another example of system imbalance was demonstrated by the different outcomes between women who were able to privately hire domestic workers versus those who relied on public programs. Despite public programs purporting to be consumer-directed (e.g., Nurturing Assistance [Centre for Independent Living in Toronto (CILT), 2018] —called “Nurture Care” by participants), participants reported that they feel an increased surveillance in these programs. However, despite this increased surveillance, the mothers who accessed these programs for their children reported that the extra support was very important to their feelings of success in the early months of parenting. In this study, I heard differences in experiences, especially with regard to relationship status (e.g., able Chapter 6: Discussion 216 partner v. disabled partner; single v. common-law/married). However, larger conclusions are cautioned due to the sample size. This study builds on previous literature conducted by women’s organizations (e.g., DAWN Canada; TLG; WWDA) and disabled researchers (e.g., Blackford, 1993; Finger, 1985; Kuttai, 2010; Ridington, 1989; Thomas, 1997) with a specific focus on disability and reproductive rights. Of the few studies that have focused on disability, parenting, reproduction (e.g., Aunos & Feldman, 2000; Basson, 1998; Grue & Lærum, 2002), these researchers conclude by calling on future studies to examine this topic more closely. This research contributes a response to the call of these researchers for a focus on disability and reproductive rights. Olsen and Clarke’s (2003) early work was critical in opening the conversation and grounding research outside of the medical and moral paradigms of risk, eugenics, and deficit. Olsen and Clarke noted that there is evidence that people with disabilities are “actively discouraged from expecting access to Priestley’s (2000) two cultural signifiers of independent adult life—employment and parenting” (2003, p. 125). Findings from my research—conducted some 10 years after Olsen and Clarke’s work— suggest that disabled women continue to encounter messaging that discourages them from considering creating a family. These encounters begin in childhood and continue across the lifespan. Further, this current study suggests that girls and young women with disabilities are discouraged from seeking choices to becoming parents including adoption. Finger (1985) wrote passionately about the exclusions she experienced growing up with a disability, “I was exempted from traditional feminine roles—no one Chapter 6: Discussion 217 ever so much as mentioned the possibility of my having babies when I grew up” (p. 292). This was true with a number of participants in this study who shared not being included in typical female child activities of their peers, such as babysitting; or in experiencing conversations where relatives actively discouraged them from thinking about becoming parents. One participant, Iris, was coerced into having two abortions. Several participants, including Heather, who adopted her daughter, lost family members over her decision to become a parent. For several participants, access to appropriate and factual information about their bodies, birth control, and choices around paths to having a family were nonexistent. There was a disconnection for many between what physicians told them about their reproductive health and what they experienced. For example, Eleanor, who has a heart condition, felt her physicians did not fully understand the how pregnancy would impact her body, nor how to accommodate her safely. She felt her physicians saw her as difficult and as taking up too many resources. Mothers who struggled with fertility issues, like Rhea and Nina, felt their physicians did not support them in finding out why they were having difficulties with pregnancy. Other participants, like Maia, felt they did not take into account how their disability and pregnancy might interact. Killoran (1994) discusses her difficulties in becoming pregnant, and how the medical specialist “never even considered my disability on childrearing” (p. 123). Similar to participants in the present, Killoran wrote about the nurse practitioner at the fertility clinic, who “seemed intent on repeatedly warning us of how hard it was to bring up a child, and how we did not know what we were getting into” (1994, p. 123). For participants in this study and those in other research, there is an argument that both Chapter 6: Discussion 218 an awareness of the medical concerns related to the embodied and material experience of disability must be balanced with the human right and desire to have a family in order for their experience of these systems to improve. The findings from the current study highlight numerous systemic barriers the women faced underscoring failings in the systems the women encountered. In my research, the women contended with disconnection across the numerous agencies and institutions they relied on, including: a lack of communication between primary specialists who manage health related to specific disability care and specialists who manage maternal health; ableist assumptions about disability and parenting; and, a lack of coordination across systems to meet the information needs of disabled parents by providing information in alternate formats. In this way, my research complements Thomas’s (2001) research, who connected the failings of reproductive medical practices her participants faced to the barriers within this system and to larger oppressive systemic issues. Ridington (1989) laid the groundwork for understanding the experiences of disabled women in Canada. She was one of the earliest researchers who began the discussion on reproductive technologies and the potential these technologies have for women with disability. I heard from four mothers who were able to access different reproductive technologies, including IVF, and donated sperm. Other studies (e.g., Mykitiuk & Karpin, 2017), have been raising concerns about the inherent ableism within modern reproductive technologies, including what is considered acceptable sperm or eggs for these clinics. Of the four participants in this study who used fertility clinics to become pregnant, only one person reported using sperm from Chapter 6: Discussion 219 a clinic, the only conversations that were had with her about choosing sperm revolved around choosing sperm of someone who “looked like her”, not her disability, but her visible features, including hair, skin and eye colour. All the participants who used these clinics discussed conversations about “passing on” their disability, even when their disability was not genetic in nature, or where this was an unknown factor. This important area continues to be understudied. All of the women who accessed these technologies faced barriers, some more challenging than others. That said, two protective factors for women were financial independence and relationship status. Further work needs to be conducted to address the discriminatory practices encountered in clinics, including the continued assumption about disability and genetics. The current research underscored the prevalence of the medical model in the lives of the women. Shakespeare (2013) highlights how the medical model’s privileging of genetic responses to disability perpetuates views that all disabilities are genetic and, second, the most dreadful outcome would be to have a child with a similar disability. All of the mothers who used reproductive technologies discussed having suggestions made regarding genetic testing of their fœtuses. Similarly, other mothers, who became pregnant through natural methods, also discussed being asked to have genetic testing once pregnant. Women discussed how they weighed these requests for screening, including decisions made to have a child regardless of disability. What was clear from women’s narratives was pervasive ableism in their healthcare encounters. In particular, the women expressed an uncomfortableness Chapter 6: Discussion 220 with specialists who implicitly, if not explicitly, communicated ableism through their comments and/or behaviour. Gibson and Mykitiuk (2012) similarly argued: “Across the accounts, the women suggested that health system policies and practices reflect erroneous assumptions about what disabled people can or should be doing” (p. e114). The women in their study reported “multiple forms of discriminatory practices that limited their access to health services. These included physically inaccessible services, inferior care for those receiving social assistance, and apparent gender-based differences in health care encounters” (Gibson and Mykitiuk, 2012, p. e115). Participants in their study also reported that physicians were reluctant to fill out forms, including one participant who stated that her physician did not want to fill out a form so that she could apply to be a foster parent (Gibson and Mykitiuk, 2012, p. e115). In my research, another barrier that several women discussed was information barriers, especially for participants who had learning or reading difficulties, or who are blind or who have vision impairments. There is not a lot written (e.g., Hayward, 2014) about the importance of relationships, including allies in the medical system. Participants in my study repeatedly shared how one person could make a difference to their experience of situations that were often ableist and discriminatory. I can think of examples in popular culture, where one teacher can impact a child profoundly, however, I have not been able to locate similar conversations in the disability literature. In part, I believe there is still an incredible tension between ideas of independence and autonomy versus interdependence and reciprocal care. Participants reported that having at least one champion or ally in the system was a crucial aspect for Chapter 6: Discussion 221 confidence in navigating the many systems that are encountered by disabled parents. For example, Kadence, who encountered multiple barriers during her journey using IVF, her experience with the first physician she encountered sustained her confidence throughout the procedures, and the experience of being pregnant. Other participants discussed their partner, or a family member helped to keep them focused on their goal to become a parent. And for both the participants who adopted children, the support of one social worker was enough to keep them moving forward through very difficult legal institutions. More research is needed to understand the impact of positive encounters for disabled individuals navigating institutions to access or investigate reproductive and sexual rights. Because disability is not homogenous and in fact includes many diverse and different experiences, it is critical to conduct these deeper dives—qualitative narrative research—into the specific experiences of individuals, across the spectrum of disability. In the context of research that seeks to understand sexual and reproductive experiences of disabled women, these close examinations of individual lives are critical to develop an understanding of disabled lives, and how women navigate their journey to having a family. There are multiple systems, programs, bias, discrimination, and family or community networks that are at play in realizing aspirations to have and to raise children. The experiences of the women in the medical, educational, government, and legal institutions are documented by past research (e.g., Bertschy et al, 2015; Kuttai, 2009; Tarasoff, 2018; Track, 2014) demonstrating how these systems are slow to catch up to human rights agreements, including legal obligations, policy, and programs. How one approaches the topic of Chapter 6: Discussion 222 parenting and reproduction for persons with disabilities, from multiple approaches and methodologies, has the potential to uncover a fuller awareness of where gaps in program delivery exist. Further, by privileging the voices of disabled women and how they navigated these systems illuminates where aspirations in policy and law are failing. Combining Two Methods: Retroactive Life History Interviews and Disability Human Rights Monitoring Using principles and building on methodologies developed by DRPI kept this research framed in the context of human rights. DRPI methodologies generally restricts the timeframe of monitoring to a five-year window (DRPI, 2009b); this limitation is specific to UN treaty monitoring timelines wherein most states are reviewed every 4 years. However, the life experiences and choices that women make on their journey to having a family often begin much earlier in their lives. By embedding an understanding of reproductive and sexual rights in the context of a life history trajectory, this research illuminates the gaps in sexual and reproductive health education and the long-term impact this had on the participants. As suggested by Priestley (2003), “[using a] life course approach offers a unique way to make links between the individual lived experience of disability in the macro social context in which disabled lives are played out” (p. 245). While both approaches are not new, the combination of an adapted form of DRPI with a life course approach demonstrates a novel methodological approach. By linking this life course approach explicitly to the human rights monitoring, I was able to identify five key themes (embodiment, accessibility, relationships, Chapter 6: Discussion 223 oversurveillance and trauma) across five key life history milestones. By situating the interview questions within these five key milestones, I was able to understand how participants experienced their reproductive and sexual health. I was able to also identify how the women navigated barriers and discrimination, and especially, I was able to document the ways in which the women became more confident in their choices—whether to assert their rights or not to in various situations. Hayward (2014) discussed the importance of relationships, or social supports in her experiences, in particular, she discussed how both her immediate family and her husband were key supports for her as she navigated both her disability and her son’s changing needs. Further, Hayward, similar to participants in this study, found allies in some of her medical team: “Having doctors, both mine and our pediatrician, support me through my pregnancy and postpartum period gave me the freedom I needed to take care of myself and adjust my daily activities to what worked best for me” (2014, p. 84). Similarly, Olsen and Clarke (2003) noted the importance of relationships as part of the social network that disabled parents rely on. As was discussed in the Findings chapter, positive relationships encouraged women and reinforced their own resiliency as they embarked on their journey to motherhood. And Thomas (2008) discussed how relationships and help can also have a negative impact on mothers, especially when this help presents as a form of surveillance. Thomas argues that nondisabled parents can usually assume that how they parent is their own concern: Disabled women do really feel under surveillance, and that feeling is usually well founded because disabled women are often assumed by professionals Chapter 6: Discussion 224 and lay people (often including close relatives) to be incapable unless they can prove otherwise: guilty until proven innocent. (2008, p. 513) Women in my study, especially those with visible or lifelong disabilities, faced many barriers to motherhood, including coerced abortions, resistance to adoption, and loss of relationships with family members once they proceeded with their plans to become parents. Further, many women discussed the increased surveillance they felt from community and government systems (e.g., hospital staff, family services, nurture care) once they became parents. Similarly, Malone (2014) noted ideas of surveillance and performing motherhood were entwined when participants in this study spoke about interactions or fear of family services. In the context of this study, it became clear that the women struggled at times with asserting their own knowledge and expertise. Women do not make decisions in a vacuum, often women rely on the expertise of so-called experts, rather than relying on their own experiences of their particular body. Often this resulted in women having difficult and inaccessible experiences related to their pregnancy, labour and delivery. That said, I also learned how important positive or supportive relationships are for women. Often women only were able to share one positive encounter in their experience to becoming a parent, yet this one positive experience gave women confidence to continue to pursue their desire to have a family. A number of women discussed making more assertive choices in their second or third pregnancies after experiencing trauma and negative experiences during their first pregnancy, demonstrating that with more knowledge, and awareness of the systems, women Chapter 6: Discussion 225 feel more empowered to assert their own expertise about their bodies, and their preferences for care. The combination of human rights monitoring with retroactive life history methods in the interviews, allowed participants the opportunity to elaborate on how they developed their own voices and agency in navigating the systems they encountered over time. Had I not documented a life history trajectory, I might not have learned about the many gaps in accessing appropriate, disability-specific, factual information for girls and young women. These contexts informed how women made later decisions that impacted them, including: coerced abortions, unplanned pregnancies, and misunderstanding about reproductive health and choices. Thomas (2008) found, “a minority of disabled women have rejected the socio-medical discourse about risk and see it as part of an all-pervasive disablist ideology” (p. 509; see also Morris, 1991). Similar to Thomas (2008), some participants in this study, especially over the lifespan, gained confidence in their own understanding of risk and their bodies. Both with Thomas’s work and this study, women weighed the risks and decided the desire to have a family outweighed any medical probabilities. Another advantage of these particular methodological choices that are emancipatory and purpose driven (see Oliver, 1997) is that they have the ability to identify inequality and inform plans for actions to address human rights and equality, explicitly connecting research to outcomes and practice—praxis. By not limiting the research to a five-year window, I was able to hear and witness the many ways that women asserted their rights. Knowing about these gaps identifies future opportunities for changes to educational and service deliveries. Finally, Chapter 6: Discussion 226 methodological choices around narrative interviews reinforced the privileging of women’s voices both in how they understood their experiences and how they navigated and disrupted an ableist system to achieve their goals around family. Women’s Narratives Within a Disabled Feminist Materialist Theory How can women’s narratives in this study connect to a disabled feminist theory as described by Garland-Thompson (2013) advance human rights for disabled women and girls? As she and others have argued, rarely do feminist studies and disability studies truly integrate (e.g., Wendell, 1997). Materialist feminists, who took on Marx and argued that women were left out of much of his work, themselves neglected disabled women in their considerations. Understanding the embodied experiences of disabled women as they navigate an ableist capitalist system is a step towards addressing human rights inequality, and in particular, understanding how many systems collide to reinforce ableism and discrimination in accessing reproductive and sexual health, as well as maternal and parental rights. It was my goal to do just this while integrating a human rights framework. In relation to the human rights experiences of disabled women who wish to become parents, and/or who are parenting, the embodied and material experiences of their narratives must be privileged and shared. Further, an awareness that all of these experiences are interconnected with social liberal and neoliberal institutions, relationships, and programs (Prince, 2009) is needed in order to inform how women’s narratives and experiences are read and understood. Finally, connecting these theories and systems to the models of disability allows for an understanding of how the lived experience of disabled reproductive and sexual rights does not reside outside of a Chapter 6: Discussion 227 long history of assumptions about what having a disability means and how inclusion and access to resource distribution continues to remain connected to and impacted by these models—medical, charity, social, and rights. Applying the four areas of reflection as suggested by Garland-Thomson (2013): representation, the body, identity and, activism in this research, I sought to understand the ways in which participants navigated their rights to full participation in society as parents. Below I investigate each of these four areas in order to frame the experiences of the participants in a broader context of disability rights research. This research expressly privileged women’s voices and their embodied experiences—amplifying their narratives in their voices, with their words. Too often minority groups are talked about or ignored. Actively engaging the women in their stories privileged and opened a window for understanding into a group that are often ignored in research and policy. Although this chapter is written and divided into sections, in actuality, the concepts of voice, representation, embodiment, identity, activism, and rights are not distinct; rather they are woven together and overlap in messy ways. Voice This research explicitly privileged the particular and embodied experiences of disabled women who are mothers in their own words. Women’s voices shone through the interviews as they discussed navigating inaccessible, prejudicial, and often stigmatizing situations. The ways in which women disrupted the systems included accessing education, both formal and informal; building up their personal resources and relationships; and, choosing when and why they would push back against discrimination. These carefully measured responses to discrimination Chapter 6: Discussion 228 included reflections on whether speaking up would improve or exacerbate their situation. Often when the women did choose to take action against discrimination, they purposefully included and relied on their relationships and networks. How women perceive and articulate navigating the systems and institutions they encounter as mothers are always understood and amplified through their voices (see Findings chapter). Understanding theoretically and practically what these 18 women reveal about the Canadian systems they encountered, and motherhood is part of untangling a system that was not set up for some bodies to enter. It is disappointing to learn that very little has changed since early writings by women with disabilities, about their experiences (e.g., Anderson, 1985; Finger, 1985; Hyler, 1985; LeMeistre, 1985; Ridington, 1989). Women in this study shared stories of encountering physically inaccessible spaces (e.g. examination tables, buildings, daycares, schools); they shared encountering receptionists and physicians who thought the woman was in the wrong place when seeking maternal care; and they shared multiple stories about having to do enormous amounts of work to make the environments they encounter work for their disabled maternal bodies. Accessibility for Canadian disabled mothers has been shown at best to be an afterthought (e.g., Gibson & Mykitiuk, 2012; Tarasoff, 2018). I am hopeful that studies like this one can bring disabled reproductive and sexual rights, and that of maternal disabled rights into the conversations in schools, medical spaces, daycares, and anywhere that an able-bodied person enters. Telling their stories in their own voices allowed participants in this study to reflect on their journey to motherhood. Allowing the space, with guiding questions for Chapter 6: Discussion 229 women to tell their stories from their earliest memories and interactions around ideas of becoming a though time until their experiences of raising their children, created a safe space where women could reflect on choices they made, the ways they navigated and successfully overcame barriers, and gave participants opportunities to reflect on where they felt the systems could improve. Privileging the voices of participants over the medical and professional voices created an opportunity to see the experience of navigating this journey to motherhood through the words of the mother. As discussed earlier in this chapter, too often studies are weighted in medical or charity models of disability, systems which reproduce themselves, stepping outside of that paradigm, privileging women’s voices, offers a glimpse into how disabled women experience these systems, and their thoughts on improved accessibility. Representation This next section discusses the implications of representation on participants perceptions of self, the potential of representation on policy, and on public perceptions of disabled mothers. Representation has powerful consequences, both positive and negative, and as suggested by DRPI (2013), media plays a role in influencing both attitudinal and policy changes. In their 2013 report, “Stories have Consequences,” DRPI argues: The media plays an important role in the implementation of the CRPD. While individuals can come to learn about the unique issues facing people with disabilities either firsthand or in close proximity through friends and colleagues in the disability community, many people will also be influenced Chapter 6: Discussion 230 through some mediated form of communication, including books, film, television, radio and digital media. (2013, p. 4) They go on in this report to discuss the role media has in portraying and conveying “a publicly-shared perception of a disability issue” and in agenda setting, including prioritizing, or influencing policy direction (2013, p. 4). I included several questions about media and representation of disabled mothers in the Interview Guide (Appendix F), however, there were very few examples of stories or examples in the media or in popular culture shared by participants: participants frequently shared that they never saw a person who looked like them raising children in media, or in popular culture. Once the interviews were completed, I followed guidelines to conduct a media review as developed by DRPI (2009a, 2013, 2015). I conducted numerous searches in multiple databases, then sought the assistance of librarians at two universities; it became clear that the conversation of disabled parenting is not on the radar of Canadian media. There were a couple examples that women did share in their interviews that I think of are of note, that of the mentally ill mother, and that of the sick or dying mother. Several participants shared that they recalled hearing stories about mothers with psychosocial disabilities harming their children (media), and in popular crime shows, mothers with mental illnesses are often to blame for children that grew up to be serial killers. This trope only further stigmatized the mothers who discussed this, especially those who live with a psychosocial disability. The other theme that came up was the idea of the dying disabled or “sick” mother, however, the women could not name a specific story or film, rather they shared that this made them sad. For Chapter 6: Discussion 231 these participants, these are harmful stories that reinforce ideas of disability as suffering for nondisabled people and makes invisible the daily experiences of mothering for those participants who live with chronic or episodic disabilities. Further, some women felt that the message was that dying is the best outcome for disabled mothers. Every single woman discussed sadness on never seeing someone like them reflected in stories, especially those who live with physical disabilities, and participants who were blind. As argued by DRPI: The media have a powerful influence on the way disability is perceived and on the attitudes of the public towards people with disabilities. It is important to document myths and stereotypes perpetuated by media portrayals of persons with disabilities and also highlight effective reporting of disability issues. (DRPI, n.d., “Disability Rights Monitoring”) Not only can media and representation play a role in raising public awareness of the issues and experiences of disabled people, but media also has the potential to “influence on setting issue priority and shared public perceptions [and] can thereby effect the impetus and policy direction regarding people with disabilities” (DRPI, n.d., “Introduction”). Finally, as important as changing public perception is, it is also important for disabled people to see themselves in stories both media reports and documentaries, but also fiction, including books, films, sitcoms, and art. As Browne et al. (1985) suggested, “we need access to each other so that we can have realistic images of what is involved in raising our children” (p. 274). Future research should include a better understanding of representation for this population, including where Chapter 6: Discussion 232 and how pressure can be applied to media and story tellers to include these diverse stories. The Body: Embodied Experience of Sexual and Reproductive Rights When discussing disability embodiment theory, especially when researching experiences of disabled mothers, the body and the experience of the body cannot be ignored or separated from the stories women shared (e.g., Daniels, 2019; Kuttai, 2009; Tarasof, 2018). Concrete language to describe and understand women’s experiences directly impacts the ability to take measures to address inaccessibility and ableism. The daily and often lifelong barriers that disabled women face in accessing their reproductive and sexual rights, as well as their right to have a family is not a theoretical or imaginary idea. These barriers and discriminatory systems impact how effectively women can make choices about their bodies, and their families. Further, inaccessibility affects whether women are able to effectively parent their children. Applying a material feminist disability lens to these discussions takes disabled parenting out of a theoretical space and spotlights the daily barriers that disabled parents encounter. Garland-Thompson’s concept of the “misfit” is useful in addressing these continued material inequalities as disabled women enter maternal spaces (e.g., maternity wards, daycares). Such spaces have yet to adjust to meet the needs of disabled bodies. As cited previously, “A misfit occurs when the environment does not sustain the shape and function of the body that enters it” (Garland-Thompson, 2011, p. 594). Women in this study repeatedly spoke about the misalignment of their pregnant, labouring, lactating, and mothering bodies juxtaposed to environments Chapter 6: Discussion 233 that were not designed and built for them. Nor have the gatekeepers (e.g. receptionists, nurses, physicians, daycare workers, social workers, teachers) to these spaces ever thought of their entry or presence in these spaces. A number of participants spoke about truly feeling disabled for the first time or experiencing their disability in a more profound way than at any other moment in their lives upon entering these spaces. I would argue that the act of moving into maternal spaces—moving from anonymity into a confrontational and visible interaction with others— constitutes “a staring relationship” (Garland-Thomson, 2009). This exemplifies what Garland-Thomson (2011) describes as moving from “a reasonable fit in a reasonably sustaining environment [that] allows a person to navigate the world in relative anonymity” (p. 596) into a misfit. Although Garland-Thomson (2011) argues that “the concept of misfit … lodges injustice and discrimination in the materiality of the world more than in social attitudes or representational practices,” she acknowledges that the two concepts exist in “mutually constituting entanglement” (p. 593). For the participants in this study, their maternal and/or pregnant, mothering bodies constituted this misfit. Civil rights movements have led to legislation and policy meant to address and create an inclusive society where people with disability ought to have opportunity to experience and enjoy the full spectrum of citizenship. Unfortunately, as this study demonstrates, the existence of law and policy has not yet taken hold in these spaces. The continued “misfitting” that is experienced by participants in this study—18 women from diverse backgrounds with differing disabilities, education, ages, relationship status, and number of children—suggests that despite decades of Chapter 6: Discussion 234 activism and civil rights progress, there continues to be enormous barriers and discrimination for people with disabilities who wish to have a family. For example, a woman living with a medical condition may in fact have risk factors to consider when contemplating becoming pregnant, such as both Eleanor and Heather in this study. Eleanor, decided to have children naturally, in part, because she did not think she would be able to adopt, whereas Heather made the decision, despite the barriers, to adopt her child. Eleanor discussed sometimes feeling as if her physician was trying to scare her into not having children, yet she persisted, adding, she did wish there was more definitive information for her to have considered at the time. However, Heather discussed feeling like her specialist gave her clear information on the potential damage that could exacerbate her condition if she were to go through with a pregnancy, and she made the decision to adopt. Ensuring that disabled women have information to make informed decisions in a format and in a manner that is accessible for her is the first step to mitigate “risk.” Further, ensuring that she truly has options if her desire is to become a mother, including the option to foster or to adopt also ensures that she has true choice and agency in her decisions on the journey to becoming a parent. Only two of the participants in this study adopted their children, they were the only ones who had considered adoption; numerous women discussed feeling that they would not be allowed to adopt, that the surveillance of their difference was insurmountable. Participants reflected that often a lack of choice, or a lack of feeling as if there are alternatives out there, in fact is what made them feel vulnerable or pressured into choices. For example, several participants reflected that they would have delayed Chapter 6: Discussion 235 having children if they had more information, or more options. Others, like Eleanor and Rhea discussed feeling pressured into having children naturally, because they did not think they would be able to adopt children. Finally, as was discussed in the section on midwives and doulas, a number of participants felt they could not ask for alternate, nonmedicalized birth options because of their disability. Risk and vulnerability were applied at so many milestones across the life course. The women shared that they were not given adequate information about sexual and reproductive health and choice; this resulted in unplanned pregnancies, abusive relationships, hurried decisions on the timing and spacing of children. These ideas of risk were highlighted by Malone (2014), in her work on young mothers and mothers with ID. She wrote: Basing parental adequacy on ability … is problematic because it focuses on risk alone, personalizes larger structural issues and examines the challenges associated with parenting without examining larger contexts such as poverty, access to healthcare, employment, education, parenting supports in a community, housing, etc. In addition, this process of ignoring contextual issues and focusing on adequacy to parent essentializes the experiences of all the mothers and creates a higher risk for inadequate supports. (2014, p. 206) Encounters with social workers who were critical of and made assumptions regarding risk and parenting only reinforce and perpetuated isolation and actual vulnerability for women. Nearly every woman had a story about not seeking Chapter 6: Discussion 236 resources or services for fear of scrutiny and the real fear that if she were to seek help, she might lose custody of her child(ren). For disabled women, their embodied experience necessitates accessibility in order to achieve their desire and right to have a family. Attitudinal barriers as well as physical barriers reinforce an ableist system that discriminates against people with disabilities who seek to create families. Compounding factors, such as encountering environments not built for maternal disabled bodies; navigating specialists ill prepared/unprepared to care for and provide services to people with disabilities; a lack of public and visible representation of diverse bodies mothering; and, developmental contexts where women repeatedly here implicit and explicit messages that they are vulnerable, at risk, or incapable of this mothering, put women into situations of risk and of vulnerability. The continued experiences of discrimination—of misfitting—that disabled women seeking to become mothers encounter must be addressed if women are to achieve full and equal citizenship in the area of maternal rights. Identity and Activism Although there is not a simple agreement within the disability literature on the concept of identity and identity politics, there is potential in uniting under the identity of disability. Siebers (2008) suggests that “people with disabilities are not often thought of as a single group, especially as a political group, because their identities are too different from one another” (p. 71). However, others have argued that there is strength in holding the identity of disabled and using this identity as a context within which to disrupt ableism (e.g, Garland-Thomson, 2013). For women who Chapter 6: Discussion 237 participated in this study, many discussed multiple identities, and how these framed their daily experiences. The identity of both mother and disabled clearly were at the forefront of these participants’ narratives: they literally answered a call for participants in a study where these two identities were highlighted. That said, they shared other identities that intersected with these two: partner, professional, Indigenous, immigrant, activist. Although this was not a key focus of this study, these intersecting and sometimes distinct identities clearly influenced how women navigated their journey as a disabled woman and mother. These embodied experiences woven with identity scratches the surface of the complexities of intersectionality and a disabled mothering experience. Siebers (2008) suggests: “The ultimate purpose of complex embodiment as theory is to give disabled people greater knowledge of and control over their bodies in situations where increased knowledge and control are possible” (p. 27). For the women who participated in this study, awareness of their identity, in all its complexities, often had two competing outcomes. Their embodied, disabled knowledge is both a central tangible dynamic in their experience of motherhood, and it is an isolating factor that actively signals—to the gatekeepers of institutions—that this individual belongs to a category of “risk” (Malone, 2014; Thomas, 2008). Straddling these two realities, all of the participants in this study discussed the joys they experience in their family; the challenges they encountered in navigating structures and systems that were never built for their bodies; and, the fear of not living up to a standard that was created for different, able bodies. Siebers (2008) argues that most individuals with a disability are simply seen as one person with one disability and not necessarily seen as a collective group. I Chapter 6: Discussion 238 would argue that ableism is a term needed to expose and to politically challenge contexts where rights are being denied. Further, the research and work of groups like WWDA, DAWN, and TLG, have explicitly connected to the identity and politics of the category of disabled and woman to activism within their countries. If we do not recognize a category of people, an identity to rally around, a group of people who collectively experience similar barriers and human rights violations, we cannot collectively name the practices that are barriers for disabled women and girls who wish to have a family of their own. By naming ableism and discrimination based on prejudice related to a category of identity known as disability, collectively, I believe, women with disabilities can name the many points of entry that confound their right to family. In many ways, the women in this study have attached to the idea of disability as a collective identity, especially those participants who connected to online communities. Connecting with others online and in person with similar experiences is one such way. However, the trepidation that many voiced regarding the fear that if they push too hard when confronted with ableism, they would be scrutinized as mothers, is very real. Unlike disability movements around access to education, community, recreation, or employment, rights-based activism around motherhood continues to be situational and individual. In a society where the ideals of motherhood burden nondisabled women with super human expectations of becoming a mother (e.g., Maushart, 2007; O’Reilly, 2008; Rich, 1986; Waring, 2004), and reinforce isolation and knowledge, disabled women are often isolated from feminist communities who work to challenge the ideal mother trope. As Chapter 6: Discussion 239 Maushart (2007) argued, “the mask of motherhood is what keeps women silent about what they feel and suspicious of what they know” (p. 461). Women in this study candidly shared with me how they weighed when to report or confront discrimination, and when to just manage alone (or within their small circle). The power of government to take away children is a powerful incentive for women to remain quiet. The messaging from a very young age (for women who experience disability from childhood) is that they should not or could not be mothers, and several women in this study expressed that they felt lucky to have their children and nervous to complain. The collective idea of disabled mother as an identity category has not yet taken hold and too often women feel extremely isolated in their role as mother. So many aspects of society do not acknowledge that disabled women are mothers; systems and services continue to be set up and run as if disability were not part of these institutions. Although identifying with the category of disability is not seen by society as positive, the women in this study who were able to connect with activism through their identity as disabled (often in other areas of their life, not necessarily related to motherhood) demonstrated there is power to be found in collective actions. The isolation and fear that someone will take away your child is damaging to women, to their children, and I believe to the richness of society. Although the size of this study was not large, the similarity between experiences for mothers in hospitals, schools, daycares indicates that collectively, many disabled parents are experiencing similar discrimination—there is a possibility for disabled parents Chapter 6: Discussion 240 collectively to stand against discrimination (see also Olsen & Clarke, 2003; Ridington, 1989; Thomas, 2008). Final Thoughts Some women made decisions to remain silent and attempt to remove themselves from a potential conflict because they rightfully deduced that the consequences within these systems was too high to take on. This deliberate weighing of cost versus benefit included a fear of oversurveillance from people in authority (e.g., social workers, daycare workers, nurses). Such findings highlight the need for change. Further research could delve deeper into the many identities we navigate and how they influence our decisions and actions. The identity as activist has implications in an emancipatory, human rights research project. Participants in this study, despite encountering many barriers, formed their families and raise their children in a society that was not built for their entry. Further, mothers also spoke about how they navigated the spaces where they could not control the oversurveillance. Still others have taken a deliberate course wherein they challenge the ableist systems openly and live with the consequences. The impact of oversurveillance and fear of government interference (losing custody) plays a role in when or if women ask for needed supports. Women spoke about being afraid to access necessary medical help for mental health and addiction issues. Participants in this study who had previously experienced negative interactions with institutions shared that they feared to report negative side effects and medical issues, especially with regard to mental health. Several mothers shared how fear of oversurveillance—potential of loss of custody—impacted their ability to Chapter 6: Discussion 241 ask for help when struggling with mental illness. There were numerous such examples when women struggled with some aspect of their disability but were afraid to seek resources and services. Similarly, Olsen and Clarke (2003) found that disabled parents struggled with access to services and supports. Sometimes, these barriers were because policies disqualified disabled parents, or because the available services were not accessible for disabled parents. According to Olsen and Clarke, “Disabled parents often find it harder to access these sources of support for reasons such as inaccessible environments, negative attitudes and structural disadvantage” (Olsen & Clarke, 2003, p. 37). Society must work harder to address stigma around mental health and mental illness, especially for parents. As discussed above, when the only representation of an experience is negative with so many examples in popular culture and news media of the most extreme cases of mothers and mental illness, it is no wonder that women are afraid to seek help and services that might support women react with assumptions of extreme risk for the child (e.g., Powell, 2014). This becomes a catch 22 wherein women are afraid to ask for help, isolate themselves and their children, and risk becomes an actual problem. Understanding disabled mothers’ perspectives and their experiences of parenting within a human rights framework can contribute to dialogue regarding the continued challenges that disabled mothers experience both in maintaining custody and access to their children, and in receiving appropriate supports and services as required for their disability needs. Wendell (1997) argues that “disability is … frequently regarded as a personal or family problem rather than a matter for social responsibility” (p. 340). Further, most resources for people with disabilities are tied to Chapter 6: Discussion 242 charity and, as Wendell writes, “many people consider providing resources for disabled people a form of charity, superogatory in part because the disabled are perceived as unproductive members of society” (1997, p. 340). Disabled mothers disrupt the ideas of charity worthy disabled because they challenge the invisible reliance on the unpaid labour of women (Waring, 2004), especially when they require social supports to meet expectations of motherhood. To meet the needs of disabled parents, policies and services need to revisit and eradicate the charity model within government systems, and explicitly shine a human rights lens on how policies are written, and how programs are delivered if they are going to have any chance of meeting their legal obligations under the CRPD (UN General Assembly, 2006). Chapter 7: Conclusion 243 Chapter 7: Conclusion Learnings, Recommendations, and Future Directions The purpose of this study was to document and understand the reproductive and sexual health, and the maternal experiences of disabled mothers. I interviewed 18 disabled mothers to better understand their choices and reproductive decisions across the lifespan. This study offers a human rights perspective on how Canada, as a signatory of the CRPD since 2010, is progressing in implementing full rights and citizenship for disabled women who wish to become mothers. Research on disabled mothers from a human rights perspective has been limited to date, and this research was initiated to identify current experiences, and to identify where gaps and barriers exist for women. Further, this study centres how disabled women experience mothering, and what can be learned from their perspectives. This chapter provides a brief summary of limitations and contributions of this research; future considerations and recommendations; and, next steps and future work. There were limitations to this research including participation was limited to English speaking disabled women in only two provinces. Further, due to the scope of a dissertation, and the length of retroactive qualitative life history interviews, participants were limited to only 18 women. The number of participants, and who consented to participate in this study meant that the diversity of disabled mothers was not possible, including understanding how intersectional identities might impact the experiences of disabled mothers. Contributions to the research on disabled mothers included developing a hybrid method approach to human rights monitoring that is transferable. Using a combined DRPI and qualitative life course history approach to understanding the Chapter 7: Conclusion 244 experiences of disabled women, who are mothers, across their lifespan created a way to understand how women come to make choices regarding creating a family. This hybrid methodology can be used by other researchers in a number of ways to document and monitor how disabled women and girls experience current programs and policies related to reproductive and sexual rights, including motherhood, across their lifespan. This study reinforced and expanded on previous research that indicated for some disabled girls, early in their lives, family and community make assumptions about their ability or prospective to become parents, and these assumptions sometimes lead to young women being unaware of their reproductive and sexual health needs and choices (Olsen & Clarke, 2003). Participants in this study shared comparable stories to previous studies. For example, participants in this study had similar experiences to Anderson (1985), who experienced difficulties with accessing affordable, safe housing to raise her children; Hyler (1985), who discussed grappling decisions around keeping her pregnancy after becoming unexpectantly pregnant, and barriers she experienced with the specialist she saw, with her parents—who were extremely negative about the pregnancy, and with her own relationship as they discussed how a child would change their lives; and Finger (1985) who discusses the reproductive rights movement and the way in which disabled women are left out of decisions about prenatal testing, and the way in which language plays a role in the movement, yet is often neglected. As identified in previous studies (e.g., Mykitiuk & Karpin, 2017; Ridington, 1989), this research identified that access to alternative paths to becoming a parent, including fostering, adopting, or using reproductive Chapter 7: Conclusion 245 technologies, is often closed to or significantly challenging for disabled women. Like newer research examining disabled mothering (Tarasof, 2018; Daniels, 2020), this study found and examined the embodied experience of disabled women who accessed prenatal and postnatal services and found that in multiple ways these spaces were inaccessible and discriminatory. Findings in this research expanded and documented some of the legal barriers that disabled women encounter (e.g., Track, 2014). Finally, this study builds on previous work completed by women’s disability rights organizations (e.g., DAWN, TLG, WWDA). Detailed examination of these can be found in Chapter 3 and Chapter 6. This research, by using an explicitly human rights driven approach, identified how systemic ableism continues to impact the citizen rights of people with disabilities in their right to choose and create a family (CRPD, 2006, Art. 23). By approaching accessibility as an inherent right to all citizens, the findings of this research documented narratives in a manner that identified problematic programs and policies, not as a charitable failure, but as a human rights failure (See Chapter 5). This research documents the voices of disabled mothers and the ways in which they encountered human rights discrimination in accessing their rights. Another contribution this research has made is that it documents the many ways in which disabled mothers are resilient. Despite the many barriers and difficulties encountered across the lifespan, all 18 of these women found a way to define and create their families. Although the women faced difficulties accessing appropriate information in accessible formats, participants in this study found ways to creatively navigate these barriers. For women who accessed reproductive Chapter 7: Conclusion 246 technologies to become pregnant, this research underscores the critical importance of even one champion or positive relationship in the medical offices. Women spoke eloquently about how when faced with ableist attitudes and barriers, recalling even one voice that was encouraging and positive, helped them to press through. For women who have inaccessible homes, or who struggle with barriers to accessible housing, the skills and problem-solving they bring to their families helped them to navigate and find solutions despite current barriers. A deeper discussion of this can be found in Chapter 5. This research identified a number of opportunities for future work and intervention. Below I highlight six recommendations: further monitoring, accessibility audits, education and anti-ableism training, systemic review of policies and programs, accessibility inclusion in all government action and strategic plans, and increased media representation of disabled families. Although this research identified many more opportunities for improvement, these six high-level recommendations would initiate the work needed to improve access and inclusion for disabled parents, and in particular for disabled mothers. First, further monitoring and an expansion of this project is recommended. Due to the scope and scale of a dissertation, this project was limited to only two provinces and 18 participants. Expansion of this monitoring will help to better understand if what was learned in this study resonates in all areas Canada and will help to understand better current barriers and gaps in systems. There are differences between populations in the disability community. Because Canada is a federation, the inclusion of the other provinces and territories in Canada is needed to Chapter 7: Conclusion 247 understand differences and similarities across the state. Further, due to funding limitations, this project only included English speakers, and I would recommend studies that document experiences of Deaf mothers, French and other language speakers, and individuals with communication disabilities. The disability community is diverse, and experiences, including barriers may be different depending on accessibility needs. Further, a broad spectrum of the intersectional experiences of disabled women across different communities and socioeconomic statuses would help to understand better where there are similar or different experiences and would support clearer action in addressing discrimination, barriers, and gaps in our current programs and services. Participants in this study highlighted a number of barriers they encountered in these spaces, conducting an audit of these programs and spaces will help identify both where changes can be made to improve accessibility, and where current needs are being met and how these can be replicated in other jurisdictions and programs. Second, I recommend accessibility audits in relation to public transportation, government funded housing, medical and health institutions, child and family services, legal institutions, daycares, and schools. For participants in this study, many of the barriers identified were attitudinal. Ableism is often unexamined and unchecked in our society. Much like the need for cultural safety and humility training to address colonialism and reconciliation (First Nations Health Authority, n.d.; Truth and Reconciliation Commission of Canada, 2015), and anti-racism training to address systemic racism (Kowal, Franklin & Paradies, 2013), anti-ableism training is needed to identify internal biases and Chapter 7: Conclusion 248 assumptions about disability and difference in Canadian society. Third, I recommend anti-ablism training and education for all those employed in the above programs and institutions (Gibson & Mykitiuk, 2012). As discussed in Chapter 6, disabled mothers report difficulties in accessing navigating the programs and policies they might benefit from. Therefore, my fourth recommendation is for a systematic review of policies and programs that impact disabled parents. A systematic review of policies and programs that serve disabled women and girls in relation to their reproductive and sexual health could help identify interventions that can be made to improve these policies and programs, and address ableism (CRPD, 2006, Art. 33; DRPI, 2012). There are multiple ways where disabled parents experience oversurveillance and discrimination as parents (Saltes, 2013). Future research should explore where these barriers exist in policy and programs and identified specific interventions. Further, future research might examine our foster and adoption systems to better understand the barriers that were identified by participants in this research in accessing alternatives to becoming parents. Fifth, as pointed out in the Discussion chapter, all government strategic action plans must include explicit language and plans for meaningful inclusivity and accessibility. Current government action plans tend to silo disability action plans outside of general population action and strategic plans. The segregation of accessibility planning from general population plans replicate and reinforce the invisibility of disabled lives from planning and funding. Further, action to include disability explicitly within all government plans signals to those implementing these plans that disabled citizens and accessibility is a priority and will receive funding to Chapter 7: Conclusion 249 implement. Further, when explicitly including accessibility goals within these plans, it is possible to monitor progress on inclusion and identify where there are challenges. And finally, my sixth recommendation is to increase media stories and representation of disabled mothers and parents in Canadian content (DRPI, 2013). Part of full citizenship and inclusion for people with disabilities is inclusion in the media and popular culture with diverse representation on an equal basis with other citizens. Some work has been done to improve media representation of disability, but as discussed in Chapter 6, and as was indicated by the participants in Chapter 5, they rarely see mothers that look like them represented in Canadian media. This research identified many barriers for disabled mothers in their day-to-day life including: access to safe, affordable, accessible housing, appropriate and accessible transportation, accessible child care, accessible schools and activities, prenatal and postnatal services, and access to information in appropriate and accessible formats. Future research must examine more closely the relationships women have in institutions and ways to address current barriers and discrimination. In order for disabled women to be able to make informed choices across the lifespan, and for those who wish to be parents to have access to the full spectrum of choices that other Canadians have, much work is needed to improve inclusion and accessibility. Through monitoring and inclusion of disabled individuals through the process, gaps within programs and policies can be identified—it is not always clear on paper where barriers exist. By actively including disability and disabled people in planning and in funding, interventions can be made to address and improve services for disabled parents. Finally, the inclusion of disability in both action plans and in Chapter 7: Conclusion 250 media stories increases visibility of disabled lives and normalizes the diversity within the disability community as part of Canadian society. If Canada is to live up to both its domestic and international human rights promises to include all people with disabilities as full citizens within the fabric of society, laws, policies, and practices must address ableism that continues to exist within them, and in our institutions that serve disabled mothers. The findings from this project will be used as part of a thematic parallel report to the next CRPD review, and learnings from this research will also be used to inform human rights monitoring with other treaties and opportunities. This will include the development of a list of issues and recommendations. Further, the learnings in this project will be shared in both academic and community spaces. 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The Qualitative Report, 21(2), 321–329. https://doi.org/10.46743/2160-3715/2016.2198 Appendices 289 Appendix A: Consent Form Appendices 290 Appendices 291 Appendices 292 Appendices 293 Appendices 294 Appendices 295 Appendices 296 Appendix B: Ethics Certificate Appendices 297 Appendix C: Recruitment Figure 1: Recruitment poster for general distribution Appendices 298 Figure 2: Poster for social media campaign Appendices 299 Appendix D: Project Information Letter Appendices 300 Appendices 301 Appendix E: Participant Identification Form3 3 This is the only location of both the code and the name of a participant. Appendices 302 Appendix F: Interview Guide4 4 This interview guide is adapted from the DRPI Interview Guide and is modified to reflect the specific focus of this research project, the reproductive and life experiences of disabled mothers. The questions have been adapted to draw out Appendices 303 more background information to document the impact of life history narratives on the interviewee’s experience of reproductive and sexual health, education and experiences across their lifespan to date, with a specific focus on mothering and motherhood. Appendices 304 Appendices 305 Appendices 306 Appendices 307 Appendices 308 Appendices 309 Appendices 310 Appendices 311 Appendices 312 Appendices 313 Appendix G: Photographic Release Forms5 Appendices 314 5 This form is part of the Ethics approval process, but was never required. Appendices 315
Thesis/Dissertation
eng
Interdisciplinary Studies
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
Hole, Rachelle
Understanding systemic barriers across the lifespan : a human rights inquiry into disability and mothering
Text