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Disabling sexualities : an exploratory multiple case study of self-identified gay and bisexual men with… Thompson, Scott Anthony 2002

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Disabling Sexualities: An Exploratory Multiple Case Study of Self-Identified Gay and Bisexual Men with Developmental Disabilities by Scott Anthony Thompson B A . (Honours) Saint Mary's University (1986) M.Sc. of Applied Psychology Saint Mary's University (1992) A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS F O R THE D E G R E E OF DOCTOR OF PHILOSOPHY in THE F A C U L T Y OF G R A D U A T E STUDIES C E N T R E F O R THE STUDY OF CURRICULUM AND INSTRUCTION We accept this thesis as conforming to the required standard UNIVERSITY OF BRITISH COLUMBIA June 2002 © Scott Anthony Thompson for the Committee: Dr. Mary Bryson, Supervisor (Educational Psychology and Counselling Psychology and Special Education) Dr. Pat Mirenda (Educational Psychology and Counselling Psychology and Special Education) Dr. Brian O'Neill (Faculty of Arts, School of Social Work and Family Studies) U B C Rare Books and Special Collections - Thesis Authorisation Form Page 1 of 1 In presenting t h i s thesis i n p a r t i a l f u l f i l m e n t of the requirements f o r an advanced degree at the U n i v e r s i t y of B r i t i s h Columbia, I agree that the Library s h a l l make i t f r e e l y a v a i l a b l e for reference and study. I further agree that permission for extensive copying of t h i s thesis for s c h o l a r l y purposes may be granted by the head of my department or by his or her representatives. It i s understood that copying or p u b l i c a t i o n of t h i s thesis for f i n a n c i a l gain s h a l l not be allowed without my written permission. Department of The U n i v e r s i t y of B r i t i s h Columbia Vancouver, Canada http://www.library.ubc.ca/spcoll/thesauth.html 6/21/02 ABSTRACT The purpose of this exploratory investigation was to investigate how self-identified gay or bisexual (GB) men with developmental disabilities managed their complex identities. Through various profiling strategies and snowball sampling techniques, seven such G B men volunteered. These key participants resided over a wide geographical area, from the coastal US to the southern part of British Columbia. Semi-structured interviews were conducted with each person, three of whom identified a caregiver as being a particularly important part of his "coming-out" process. Semi-structured interviews were also conducted with these supporting participants, as well as a few other relevant professionals. Key participants' life stories were framed within several theories: namely; Goffman's (1963) stigma, Lave and Wengers' (1991) legitimate peripheral participation, disability theory, queer theory and Smith's (1987) institutional ethnography. Similarly, the supporting professionals' responses were analyzed. The results present rich kaleidoscopic narrative descriptions, and provide many implications for special education practice and queer activism. TABLE OF CONTENTS '" Abstract ii Table of Contents iii List of Tables vii Poem by Key Participant viii Acknowledgments ix CHAPTER ONE 1 Introduction: A Queer Kaleidoscope 1 These Glass Bits 2 Homophobia, Heterosexism, Heteronormativity, Disability-phobia, Ableism, and Ablenormativity 3 Some Glass Bits: Understanding Disability, "Homosexuality" and Identity within Special Education Theories 6 The Normalizing Practices of Normalization 6 Critique and Implication of Normalization with respect to Identity and Sexuality 9 The Least Restrictive Environment (LRE) 10 Critique and Implication of LRE with respect to Identity and Sexuality... 11 The Principle of Partial Participation (PPP) 13 Critique and Implication of P P P with respect to Identity and Sexuality... 14 More Glass Bits: Understanding Disability, "Homosexuality" and Identity as Educational and Institutional Practices 15 Sex Education Curricula 16 The "Everyday" Practices of (Educational) Institutionalization 17 Still More Glass Bits: Understanding Disability, "Homosexuality" and Identity as Propagated Myths, 20 Caregiver, Teacher and Parental Attitudes Toward Sexual Orientation 21 Persons with Developmental Disabilities: Attitudes Toward Same-Sex Behavior and LGB Identification 24 LGB Persons with Developmental Disabilities 25 Research Questions 26 CHAPTER TWO 27 The Kaleidoscopic Lens (or The Theoretical Framework): Identities as Communal Praxis 27 Stigma: The Management of Identity 28 Stigma and Community Participation 29 Legitimate Peripheral Participation: Identification and Community 31 Illegitimate Non-Participation, Dis-ldentification and Community 33 Disability Theory 34 The Social Model of Disability 35 Disability Theory and Persons with Developmental Disabilities 35 Self-Advocacy Movement and People with Developmental Disabilities 37 Queer Theory 38 Some Cautionary Notes 39 The Material or Critical Queer 40 iv C H A P T E R TWO (continued) Institutional Ethnography 41 And Now a Re/turn to our Kaleidoscope 44 CHAPTER THREE 45 Method of the Inquiry (aka Kaleidoscope Instructions) 45 Logic of Inquiry 46 Ethics as Method 46 Exploratory Multiple Qualitative Case Study Design 47 Generalizability, Reliability and Validity 49 Generalizability 49 Reliability 50 The Deliberate Researcher—A Measure of Reliability 51 Validity 52 Cross-Checks of the "Facts" within the Interviews 53 Cross-Checks of the Identity Management Stories 55 Member Checks 55 Looking for Negative Evidence 57 Crystallizing the Evidence 57 Informed Consent and Other Ethical Considerations 58 Informed Consent and Key Participants 58 Informed Consent and Supporting Participants 59 Internal and External Confidentiality 59 Method of Data Collection 60 Profiling the Research Project 60 Chain or Snowball Sampling Strategies 63 Specific Data Collection Techniques 64 Semi-Structured Interviews 64 Hypertext Interview Guides 66 Setting Negotiation(s) 68 Direct Observations 69 Documentary Collection and Analysis 70 Data Management and Recording 70 Transcription Reliability and Validity 70 General Data Management 71 Data Analyses 71 Coding and Categories 72 Specific Analytic Processes 74 Reciprocity 75 CHAPTER FOUR 76 Lester's Story: A Foreword (as recounted by Felicia his caregiver) 76 Institutional Practice in Non-Institutions: Sexual Regulation and Community-Living 80 Lack of Resources 81 Lack of Policy 83 Questionable Resource Access 84 "Straight" Recruitment or Compulsory Heterosexuality 87 V C H A P T E R FOUR (continued) Gay and Bisexual Men with Developmental Disabilities Introduction to the Key Participants 88 Kenneth 91 Lawrence 92 Thomas 94 Cai 97 Kevin 99 Eric 101 Evan (and his partner Ernie) 102 Queer Identity Management and Disabled Participation 106 Strategy One: To Be (Gay) or Not To Be (Disabled) 106 Strategy Two: To Be (Gay) or Not To Be (Gay): That is the Context 109 Strategy Three: To Be (Unique) or To Be (Uniquely Gay) 114 Strategy Four: To Be "Profoundly" Gay or To Be "Profoundly" Institutionalized 117 Strategy Five: To Be is To Be Myself! 119 CHAPTER FIVE 123 We Are Family: Supporting Professionals and Paraprofessionals 123 GayCare and the Cared-for 127 Will and Kenneth 127 Mitch and Kevin 131 Judy and Eric 132 CHAPTER SIX 136 The Making of Vulnerabilities and Choice, Power and Control 136 Gay Men with Developmental Disabilities are People First with Disabilities 136 The Making of Vulnerabilities (Part 1) 136 Residues of Sexual Abuse and Sexual Fictions 137 Gay-bashed 141 Sex Underneath the City 142 The Drag of Competence (Part A), and The Drag of Competence in a Sequinned World (Part B) 145 Choice, Power and Control (Part 1) 149 Self "Acceptance" 149 I'm Gay/Bi When / Say So 151 Home, Sweet Homo(Sexuality) 153 The Making of Vulnerabilities (Part 2) 155 All in the "Other" Family 155 Smart Dating is Straight Dating 160 Safer (Homo)Sexualities 163 With/lnA/isibility 165 CHAPTER SEVEN 168 Subversive Political Practice: Supporting Choice, Power and Control (Part 2) 168 The Queer Agenda 170 vi C H A P T E R S E V E N (continued) GAB: The LGB and Questioning Youth Support Group and A Safe Place for Gay/Bisexual Men with Developmental Disabilities (and/or Men with who Have Sex with Men) 172 Subversive Political Practice 174 Minimal Red-tape, Maximal Participation 175 Facilitating Emotional and Physical Safety 176 A Flexible Structure with an Organic Agenda 177 Plain Language: Translating Gay-Speak and Clinical-ese 178 Mitigating the (Re)lnscription of Disability Oppression among Group Participants and Facilitating Inclusion 179 Disabling Practices within L G B Spaces 180 Strategies to Combat LGB Oppression 182 Performance Rights not Performance Rites 183 Undoing the Effects of Other/ing Professionals 184 There are No Small Parts: All Sexualities Valued 185 Validate and "Normalize" Experiences in L G B Communities 186 Conclusion 187 CHAPTER EIGHT 188 Conclusions 188 Introduction 188 Qu(ie)erying Disability Theory: Ability/Disability, Acceptance/Rejection, and Identification/Dis-ldentification 192 First, You Are Disabled; Then, You Are Disabled 193 Difference in Rejection/Acceptance 195 Acceptance/Rejection in Difference 198 Queer Theory and Queer Identity: Valid/ln/valid, Public/Private and Subversive/Complacent 201 Valid/ln/valid and Public/Private 201 Queerly Helped: Behave/Misbehave. 203 Queer Agency and Representation: Subversive/Complacent 211 Conclusion: Final Re/turns of the Kaleidoscope 214 REFERENCES 223 Appendix A 240 Appendix B 244 Appendix C 247 Appendix D 249 Appendix E 251 Appendix F 253 Appendix G 254 Appendix H 257 UBC Behavioural Ethics Research Board: Certificate of Approval 259 Ethical Approval from The Centre: A Community Centre Serving and Supporting Lesbian, Gay, Transgendered, Bisexual People and Their Allies 260 vii LIST OF TABLES Table 1 -Descriptions, Notable Beliefs and Identity Management Strategies of the Key Participants 65 Table 2 - Supporting Professionals (not connected with key participants).... 79 Table 3 - Descriptions and Notable Beliefs of the Key Participants 90 Table 4 - Supporting Professionals and Paraprofessional (directly) connected to Key Participants 127 When I first came out I wanted to shout But all I could do was stare For I became white as a ghost Which shocked the host But deep down they cared For they got me a drink And I started to think That it's OK to be gay Then I had time to reflect On what's to come next Of which guys would come my way -Poem written by a key participant / have confidence in my ability as a gay male. -Quote from a key participant's published article ACKNOWLEDGMENTS Five years ago when I was doing course work in the Faculty of Education at U B C , 1 was very confused about what was to be my project. I knew I was passionate about the plight of people with disabilities, as well as those of lesbian, gay, and bisexual people. I did not think that these desires could become part of one project. Perhaps there is no greater gift that an advisor can give her student than the belief in the purpose of his research and in his "ability" to execute it both competently and sensitively. Those are the very gifts, among many others that I have received from Dr. Mary Bryson, and I am grateful. Mary helped me (successfully) navigate the mazes of grant applications, provided constructive advice on my (our) published articles, provided a directed readings course, helped me through my comprehensive examinations, prepared me for my oral defence, and assisted me with my C V and job interviews. I am not at all embellishing when I say that Mary went above and beyond her responsibilities as a supervisor. I hope I am able to provide my students with half as much as I have been given, I sincerely appreciate the work of my other committee members, Dr. Pat Mirenda and Dr. Brian O'Neill, for their timely advice, and guidance. Specifically, I thank Pat for providing me with crucial contacts in the field of developmental disability, namely David Hingsburger and Shelley Hourston. From the start Pat has been enthusiastic about my work, and is the quickest person I know answering emails. Her responses were always positive and very encouraging, and at times, I really needed that. I thank Brian for his understanding, his calming demeanour and his excitement. Brian also provided me with crucial advice and guidance over the course of this project, and I am most appreciative. Although my committee members came from very different ideological spaces, each of their contributions was invaluable, and in my opinion they functioned exceptionally well as a group. My journey through this has been much richer due to their varied backgrounds and richer still because of their professionalism. There are a few other mentors that I wish to thank; Dr. Suzanne deCastell, in particular, was invaluable for helping me find my writing voice. I took several qualitative methods courses from Dr. Allison Tom, who was always encouraging me and even proof-read a few of my articles. Also, I would like to express my appreciation to Dr. Karen Meyer, who is the Director of the Centre for the Study of Curriculum and Instruction; the centre is an interdisciplinary space within the Faculty of Education at the University of British Columbia. I believe that I am able to theorize about people with developmental disabilities as an oppressed group because of listening to my colleagues discuss the plights of women; people of colour; and gay, lesbian, and bisexual people within that space. There are several people in my local communities who have been enormously helpful. I thank Alisa Levenstein from the Sunnyhill Sexual Resource Network for providing me with many different resources—sex education curricula, contacts in the field, and support. Jenn Horgos, the Director of Youth Services at the Centre for Lesbian, Gay, Transgendered and Bisexual Persons and Their Allies, also provided perspective, advice and a sounding board. Shelley Hourston, the director of the Wellness & Disability Initiative of the AIDS and Disability Action Program for the BC Coalition of People with Disabilities, provided useful contacts and information, and I thank her. Through the wonder of today's technology, I was able to connect with David Hingsburger. He provided me with crucial leads to access the support group for gay/bisexual men with developmental disabilities. These participants' interviews are a significant contribution to this project, and for helping to secure them, I wish to thank David Hingsburger. I wish also to extend thanks to the facilitator of this group; he taught me much about the politics of identification. There are many other thoughtful professionals that have provided support, and I sincerely thank them all. I have not named them all since some are directly linked to key participants in the study. Also, I am indebted to the former Laurel Group Board of Directors for supporting this project, and to Colin Tisshaw, the Executive Director. I would also be remiss in not mentioning the professional behaviour consultants and administrative personnel at Laurel Group that have helped me get through the many stages of this project. I would like to thank my family for their continual support, my mother, my sister and my partner for their extended patience—listening to how far I had progressed on this dissertation over and over again. Above all, I wish to thank the key participants for allowing me perhaps only a glimpse of their lives, but in doing so, they have shown me their tremendous courage and wisdom. Disabling Sexualities 1 CHAPTER ONE Introduction: A Queer Kaleidoscope The general purpose of this investigation is to navigate the nexus between lesbian, gay, and bisexual (LGB) identification(s) and developmental disability imputation(s). The more circumscribed and practical aim is to understand how self-proclaimed gay or bisexual (GB) men with developmental disabilities regulate their identities. As an area of investigation, this is new theoretical territory, so the intent is to begin to map some of the complexity and novelty of such identities. To do so necessitates acknowledging both the inevitable incompleteness of such charting and the incessantly changing nature of the terrain itself. In some ways this project feels like a series of kaleidoscopic shifts—the picture changes with each shake of the bits of coloured glass. Yet these portraits are even more remarkable and more inspiring since this kaleidoscope is queer—the glass fragments are malleable and the lenses are changeable. In this project, these glass bits are the (not unproblematic) identity markers developmental disability and GB, which, needless to say, rarely occur together. Talking about them simultaneously stirs connotations that are at times contradictory and at other times uncomfortably congruous. Developmental disability, and all its (re)incarnations—for example mental retardation, mental handicap, etc. —invoke both maternal instincts, (protect them: the myth of eternal innocence) and survival instincts (protection-from-them: the myth of crazed carnality). More often the protection-from-them impulse is associated with homosexuality, but its perceived origin has impact here. Sexual orientation as an innate characteristic may engender more pity, charity, and compassion than sexual orientation as a choice. Choice seems to be the central tension in the lives of people labelled with a developmental disability, for hardly ever is the term 2 as identification self-inflicted. In the not-so-recent past, the same may have been said for the term homosexual—others ascribed the term, the identity. Disability implies a disconnection from the body; developmental disability implies disconnection, displacement, and disorder. In many ways, gay in its current North American incarnation is the enacted (male) body—the macho, the perfect, the flawless, the unblemished. Each myth, fable, and "truth" is real in its effects, and it is the study of those effects that is of interest here. These G lass Bits These identity regulations are complex and contextual, so an appreciation of the practices of homosexuality and the practices of developmental disability within institutional and community settings is required—understanding how these glass bits function within a momentary landscape, and at the same time understanding how they set the occasion for the next landscape(s). In these senses, each glass piece reflects upon itself, as self-perpetuating and self-fulfilling practices; that is, LGB and disability prejudices constrain queer sexual expressions for people with disabilities. As a result, there are few self-identified and identifiable LGB people with developmental disabilities. In return, these attitudes are created and reinforced by lack of positive and "out" LGB people with developmental disabilities. To reiterate, this chapter is an attempt to conceptualize how developmental disability1 and homosexuality as systems operate in North American society with particular reference to sexual identity issues. The first glass bits in these kaleidoscopic pictures begin with an inquiry into several special education theories designed to guide 1 One of the most significant practices that produce developmental disability is the term developmental disability itself. Indeed, what constitutes a developmental disability is changeable and cultural; therefore, the term is unclear (Sanua, 1984,1987,1989) . What is clear is that powerful people label powerless people (see Borthwick, 1996; Harry & Anderson, 1995). Although the term is used judiciously throughout this research, I am uncomfortable with it. This discomfort arises out of the recognition of an almost complete culturally complicit practice in the production of developmental disability. It is difficult to disrupt a practice while simultaneously employing it—talking about disability as though "it" were an "authentic" reality while at the same time, the talking about disability, as practitioners' and clinicians' actions to integrate people with disabilities (including LGB people with disabilities) into schools and communities, etc. A critical review of theory is necessary because ostensibly, theory guides "real world" practice. More significantly, theory is itself a practice that reflects and propagates certain material prejudices. In other words, these theories of community participation offer an opportunity to see the kinds of "disabled" identities that are to be procured and offered as "acceptable" to the larger society. More glass bits into the mix are represented as a brief overview of these practices within schools, since educational institutions are a considerable and formative (de)socializing space for people with (and without) developmental disabilities. This section begins with an analysis of specific sex education curricula used in schools (and in community residences) for students with developmental disabilities, which is followed by an examination of the hidden curriculum that affects all students, especially those most vulnerable. The last set of glass bits is in a sense an outcome of the first two, namely caregivers' attitudes as well as those of people with disabilities themselves in relation to same-sex issues, and is mostly representative of these practices in community-living contexts. Homophobia, Heterosexism, Heteronormativity, Disability-phobia, Ableism. and Ablenormativity In this inquiry, there are at least six ways to describe the prejudices that LGB persons with developmental disabilities encounter daily. Since these operate so pervasively, they will be referred to often, so it is fitting to define them here. These oppressions may be thought of as varying topographies with a common impetus; they are all forms of normalizing practice. Before the variations are named, a definition of normal is offered. "Normal," rather than a "thing," or an ideal, may be thought of: someone not disabled, makes it a reality. as a principle of coercion in teaching with the introduction of a standardized education ...; it is established in the effort to organize a national medical profession a hospital system capable of operating general norms of health Like surveillance and with it, normalization becomes one of the great instruments of power at the end of the classical age. For the marks that once indicated status, privilege and affiliation were increasingly replaced—or at least supplemented—by a whole range of degrees of normality indicating membership of a homogeneous social body, but also playing a part in classification, hierarchization, and the distribution of rank. In a sense, the power of normalization imposes homogeneity; but it individualizes by making it possible to measure gaps, to determine levels, to fix specialties, and to render the differences useful by fitting them to one another (Foucault, 1984, p. 196). Homophobia, heterosexism, and heteronormativity describe strategies that oppress queer sexualities—meaning anything other than heterosexuality. Sears (1992) describes homophobia as "...an irrational fear of homosexual persons. Over the years, however, homophobia has been expanded to include disgust, anxiety and anger. Further, it has come to be used as not only the reactions of heterosexuals but the internalisation of negative feelings by homosexual men and women" (p. 38). Homophobia may be described as a particular fear, whereas Herek (1992) characterises heterosexism more pervasively, as "an ideology that denies, denigrates, and stigmatises any non-heterosexual form of behaviour, identity, relationship, or community" (p. 89). Finally, Hodges (1998), after Warner (1993), defines heteronormativity as "a word which is used to bring together, and make explicit the embedded assumptions of heterosexuality in the socially constructed relations of what constitutes 'Normal;' to make visible what underwrites the practical 'everyday' assumptions about what is 'always-already' assumed about 'being normal'" (Hodges 1998, p. 272). Disability prejudices seem not as thoroughly theorized throughout the literature as those with respect to sexuality, although they have certainly been explored. For clarity here, analogies are drawn between the sexuality oppressions just cited and those concerning disability. As the term homophobia has been used to represent a fear of LGB persons, disability-phobia may describe a fear of persons with disabilities, and/or an antipathy that people with disabilities have about themselves. Ableism, then, may be characterized as the ideological presumptions of the able-bodied "normal" over and against people with disabilities. Lastly, ablenormativity, coined here, refers to another unspoken premise within "normal," namely, ability and/or able-bodied-ness. Although each practice operates slightly differently, all simultaneously conspire to suppress identifications of LGB persons with developmental disabilities. As Tremain (1996) observes, Apparently, the category of "disabled person" and the category of "dyke," are mutually exclusive ones: one is either an asexual disabled person, or one is a dyke, but one cannot, it seems, be both a disabled person and a dyke (Tremain, 1996, p. 16). Indeed, OToole (1996, p. 222) concurs: "Homophobia creates many obstacles that may not be visible to people who are sensitive only to issues of disability discrimination." A review of the special education 2 literature reveals at least three main areas that impact identity processes (including those of queer sexualities) for persons with developmental disabilities. The first of these are special education precepts, almost statutes: namely, the normalization principle, the Least Restrictive Environment, and the Principle of Partial Participation. These principles are frequently referred to, and are almost assuredly a part of special educators' 3 formal learning to prepare them to support and teach persons with developmental disabilities. The second of these are biased "official" sex education curricula and—more saliently for this project—"unofficial" 2 I use the term special education in a very broad sense, meaning not only formal teaching programs within state sponsored schools for people with disabilities, but also informal curricula and education that occurs outside of schools and throughout adulthood. 3 I similarly use the term special educator in a comprehensive way, to include a myriad of indirect and direct caregivers. My point is not to conflate unnecessarily the multiplicity of paraprofessional and professional titles and responsibilities, but rather to identify key philosophical underpinnings within the discipline of special education that affect almost everyone within the field. In addition, it is important to make explicit the fact that, as special educators, we are educating at all times. The tacit normal remains in many ways or "hidden curricula" that operate within educational and institutional environments. The final part is a review of the kinds of attitudes caregivers, professionals, and people with developmental disabilities espouse around homo/sexuality and people with disabilities— in many ways this part reflects the outcome of the first two sections. Some Glass Bits: Understanding Disability. "Homosexuality" and Identity within Special Education Theories The Normalizing Practices of Normalization For approximately thirty years, services for persons with developmental disabilities have been guided by the normalization principle. Most special educators currently working in schools and colleges will have been exposed to the principle as part of formal course work to obtain a teaching degree or diploma, if not through the PASS Normalization training (see Wolfensberger & Thomas, 1983). Incidentally, in practice, most service professionals working in the area of developmental disability still use the term normalization (see Brown & Smith, 1992). The conceptual construct of normalization, then, has been a large part of formal and informal educational curricula of service management for persons with developmental disabilities, especially in the 1970's and 1980's. Wolfensberger's original definition of normalization was "utilization of means which are as culturally normative as possible, in order to establish and/or maintain personal behaviours and characteristics which are culturally normative as possible" (Wolfensberger, 1972, p. 28). The objective of normalization is that persons with disabilities be presented with the same opportunities as those without disabilities, not that persons with disabilities be "culturally normative" in the literal sense (i.e., not be disabled). The principle's the unspoken goal within special education. 7 implications are deep: residences for persons with disabilities should be structured as homes, (i.e., smaller not larger); services and amenities (such as medical, dental, coiffure, recreation centres, libraries, and banks) should be accessed in the local community; educational settings should be integrated, etc. Wolfensberger (1972) proposed broad-ranging normalization goals on three levels: the person, the social service system, and the societal system. Each level had as its ultimate goal the "eliciting, shaping, and maintaining [of] normative skills in persons [with disabilities]" (p. 32). On the individual level, this goal was to be accomplished "by means of direct physical and social interaction with [persons with disabilities]" (p. 32); on the service level, "by working indirectly through primary and intermediate social systems, such as family, classroom, school, work setting, service agency and neighbourhood" (p. 32); and on the societal level "by appropriate shaping of large social systems, and structures such as entire school systems, laws and government" (p. 32). To reiterate: the desired outcome from all these efforts is that the lives of folks with disabilities be as "culturally normative" as possible. Since 1972, Wolfensberger has spent the better part of his career attempting to clear up misunderstandings about the normalization principle (1980, 1983, 1995a,b). In particular, he has repeatedly emphasized that it refers to normalizing environments, not normalizing people. Wolfensberger (1983) changed the name normalization principle to social role valorization (see Emerson, 1992, p. 6), to be clearer about revealing how "bad ideologies" operate. The stigma of being developmentally disabled, Wolfensberger reasoned, is really the problem. The stigma limits the possibilities of "culturally normative" lives. Thus, "the most explicit and highest goal of normalization must be the creation, support and defence of valued social roles for people who are at risk of devaluation" (Wolfensberger, 1983; p. 234). That Wolfensberger foresaw and participated in the massive de-institutionalization of people with disabilities though his theoretical formulations is impressive. It is a credit to him that theorists concerned with community/educational curricula and reform for people with developmental disabilities are still influenced by him. Normalization is important. But as much as Wolfensberger endeavoured to focus normalization upon environments, there is an implicit assumption that normalizing environments (in terms of community access and opportunity) will not lead to normalizing people (in the sense of making people with developmental disabilities "normal"). This assumption may account for the sustained confusion between normalizing environments and normalizing people associated with this principle. Recently, for example, theorists have argued that the normalization principle ignores gender (see Brown & Smith, 1992), race and class (Ferns, 1992; Hattersley, 1991), age (Walker & Walker, 1998), and sexual orientation (Brown, 1994). Because the normalization principle does not account for any difference other than disability, theorists and service providers may assume no other "bad ideologies" exist. Such reasoning results in a paradoxical outcome; namely, normalization may act in such a way as to reify and then sanction the norm, the "normal": [Normalization] does not appear to encourage [and may] discourage...any questioning of the status quo. Society's values are left untouched, while the responsibility for any change in the direction of those values is placed on the disabled and devalued person....Normalization, as portrayed in the literature, appears not to challenge...dominant values, and, by definition, appears to endorse them (Hattersley, 1991; pp. 3-4). The normalization principle does not challenge the category "normal" or notions of "culturally normative" behaviour, and so endorses a kind of participation that is impossible by persons with developmental disabilities. If one is disabled, one is "abnormal"; if one is able-bodied, one is "normal." The concept of the normal life or the "normal rhythm of life" is an able-bodied concept. Further to this point is the notion that the normalization principle does not operate in such a way as to foster any reflectivity of special educators on their (often able-bodied) practice. Critique and Implication of Normalization with Respect to Identity and Sexuality Brown (1994) argues that the normalization principle has failed to impact the provision of services to support the sexuality of persons with developmental disabilities for two reasons. First, Brown (1994) asserts the normalization principle implicitly posits a universal and "normal" sexuality (i.e., heterosexuality). Sexual behaviour is regulated on the basis that there are "normal" people who have "normal" sex. Secondly, Brown contends that services for persons with developmental disabilities police, limit, and survey their recipients' behaviours and attitudes: Service workers have balked at actively supporting people in "ordinary" sexual roles, because beneath the rhetoric workers suspect that these "ordinary" roles are off limits. What is valued for others is greeted with fear, hostility and disapproval by members of the public when it is people with learning disabilities who want to engage in sexual activities. Indeed part of the eugenic agenda is still alive and well in that services are supposed to act as a container and regulator of the sexual behaviour of people with learning disabilities (Brown, 1994, p. 129). From this perspective, sexuality has to be restrained, contained, and bordered. Special educators fluctuate between these two contradictory identities, non-sexual vs. heterosexual, to the detriment of the cared-for. Many service providers continue to be guided in their own practice by the normalization principle. Clearly, this principle has advanced the cause of persons with developmental disabilities integrating into our educational institutions and other facets of community. It has been shown, however, that the principle may potentially limit the sexual expression of persons with developmental disabilities, especially same-sex expressions. Despite these theoretical and conceptual flaws, the normalization principle continues to be widely cited; in fact, Wolfensberger is still quoted in various policy documents for people with developmental disabilities (see Mainstream Association for Proactive Community Living [MAPCL] Mission Statement, Philosophy and Objectives, 1999, for example). The Least Restrictive Environment (LRE) In contrast to the principle of normalization conceived by a special education theorist, LRE (also known as Least Restrictive Alternative or LRA) grew out of a need first recognized during judicial processes. "The Supreme Court developed the LRA doctrine as a means of limiting what governments could do to an individual even where the court acknowledged that the government had a legitimate interest in doing something" (emphasis in original; Turnbull, Ellis, Boggs, Brooks, & Biklen, 1981, p. 25). During the 1980's in North America, massive numbers of people with disabilities began to be integrated into communities, so practitioners had to do something to facilitate these transitions. An entire interdisciplinary and highly specialized team adapted LRE to be used to support people with developmental disabilities (Turnbull et. al., 1981). Although LRE never seemed to become as prevalent as the normalization principle, it is a significant contribution in the ongoing attempt to facilitate community inclusion and service provision for persons with developmental disabilities (see Bruininks & Lakin, 1985). At the heart of LRE is the notion that residential, vocational, and community environments need to be structured such that the freedom of persons with developmental disabilities is not unduly restricted: The focus on LRA implementation must remain on the creation of less restrictive alternatives, rather than on the reduction of unduly restrictive choices. In this way unnecessary restriction of human freedom can be eliminated while freedom of choice is augmented (Turnbull et. al., 1981, p. 32). Freedom is recognised as a necessary prerequisite for growth for persons with developmental disabilities (as it is for anyone)—in fact, freedom is the cornerstone of L R E . Restriction, it is argued, must be understood broadly. For example, social workers who assess life choices for (or with) a person with a developmental disability must also include future options in those appraisals. So, potentially compromised freedoms must be accounted for in current determinations. Most often LRE is graphically displayed in three parallel lines, each representing a continuum: the first continuum depicting residential options, the second continuum depicting vocational options, and the third, community options. At the left of the parallel lines lie the most restrictive choices. For example, institutions, sheltered workshops, and day-programs are all highly restrictive environments. Those options located on the far right of the continua (are thought to) represent least restrictive environments. Ideally, service providers evaluate where a given person is situated along each continuum, and the goal is to move to the right of each continuum—towards increasingly greater and greater independence. Critique and Implication of LRE with Respect to Identity and Sexuality Turnbull et. al. (1981) acknowledge that the apparent simplicity of the LRE may mask its theoretical depth and/or the procedural complexities and challenges to implementing the principle. For example, service providers may more often use the principle of economic determinism to justify particular placements for people with disabilities. As such there may be a familiar nihilistic pull towards the (often unacceptable) status quo, which plays out as something like "We'd like to provide less restrictive supports, we just don't have the dollars to pay for them." As Taylor (1988) has pointed out, however, LRE has some major conceptual flaws irrespective of its implementation—flaws that have implications regarding the identity and sexuality of people with developmental disabilities. First, the LRE is predicated on the issue of restriction and control. That is, by conceptualising the goal of greater autonomy and community participation for those with developmental disabilities in terms of restriction, the LRE paradoxically supports the notion of most restrictive environments. Taylor (1988) refers to this as the "legitmatfion] of restrictive environments" (p. 45). If it is unclear as to what exactly constitutes tolerant environments for same-sex expression or how to foster them for people with developmental disabilities, restrictive environments seem the inevitable and perpetual defaults—environments that can be paradoxically supported by LRE to be in the "best" interest of an individual with a disability. Second, Taylor argues that LRE confounds the issues of intensity and integration: "The principle assumes that the least restrictive, most integrated settings are incapable of providing the intensive services needed by people with severe disabilities" (1988, p. 46). Many have used this familiar argument to substantiate the creation and maintenance of institutions (see Ryan, 1987, for example). In addition, LRE is predicated on the "readiness" model (Taylor, 1988, p. 46). That is, when persons with developmental disabilities "prove" that they are ready for less restrictive residential opportunities, these will be provided. What is at issue is who determines what "readiness" looks like—often not individuals with developmental disabilities. With respect to sexuality and identity, it would be difficult to determine how someone with a disability were "ready" to attend a Pride event, to live in a LGB neighbourhood with a LGB room-mate—in effect, to "be" gay. The other side of the "ready" contention is the potential for persons with developmental disabilities to be perpetually moving: The LRE principle implies that people must move as they develop and change. As LRE is commonly conceptualized, people with developmental disabilities are expected to move toward increasingly less restrictive environments [emphasis added] (Taylor, 1988; p. 49). 13 The emphasis of the LRE on settings and not participation within them obscures some real dilemmas. For example, rather than asking if people with developmental disabilities are "prepared" to participate in communities of their choice, perhaps the question is how to facilitate such participation, for what may be missed is the complexity of the relationship between restrictive/permissive environments and identity. Environments that appear to be quite liberal overall with respect to various kinds of freedoms, may be quite constricting with respect to same-sex expression for people with developmental disabilities. Further, these constraints may not even be easily discernible to caregivers, causing such residential placements to repeatedly collapse for LGB people with developmental disabilities. Perhaps, a precondition for freedom is to know what it looks like. The Principle of Partial Participation (PPP) Like L R E , the Principle of Partial Participation (PPP) was designed in the early 1980's during the big wave of integration, although P P P was primarily proposed in order to facilitate the inclusion of students with developmental disabilities into schools (Baumgart et. al., 1982). In addition, whereas LRE and normalization are meant to be used as guidelines to promote community inclusion for any person with a developmental disability regardless of where they may "score" on the intellectual spectrum, P P P is intended primarily for people with "severe" disabilities. P P P theorists attempted to correct for at least one of the conceptual flaws of L R E ; Baumgart and her colleagues equally prioritised the goals of participation within (integrated) schools and intensive educational programming. P P P "is essentially an affirmation that all severely handicapped students can acquire many skills that will allow them to function, at least in part, in a wide variety of least restrictive school and non-school environments and activities" (Baumgart et. al., 1982, p. 19). 14 The directions for practitioners to actualise P P P are well articulated; there are four stages. First, record the steps a non-handicapped peer engages to perform a task; second, record the student's ability to perform the same task. Next, determine the skills the student can potentially acquire; and, finally, the skills that probably will not be acquired. Thus, adaptations can be made based upon the difference between those skills likely and not likely to be learned. Ideally, these adaptations make possible three things: an individual's participation in activities from which they likely would have been excluded, participation that maximises an individual's potential, and individually tailored educational goals. Critique and Implication of P P P with Respect to Identity and Sexuality Baumgart and her colleagues recognized that participation is at the heart of educational endeavours for students with developmental disabilities. Further, these researchers offered concrete procedures to bring about integration and inclusion. Unfortunately, P P P has been frequently misinterpreted and misapplied. Just as with the term normalization, it is probable that it is the very name of the principle of partial participation itself that has caused it to be so misunderstood. It seems that the word partial \r\ P P P has been misconstrued to imply negligible, minimal, or token participation. As long as persons with disabilities are physically present in a classroom or other setting, certain educators may argue that these individuals are participating to the level they are able. They are partially participating in community. Such "participation" is passive with few opportunities to become active so as to affirm community membership. Participation is inextricably linked to identity, as will be thoroughly detailed in the following chapter. Recognising these quandaries, Ferguson and Baumgart (1991) re-examined the principle in an attempt to ameliorate what they called "patterns of misinterpretation," 15 namely myopic participation, piecemeal participation, and missed participation. Although the principle of partial participation was "revisited," its name was not; it remains P P P . In the end, perhaps labelling participation as partial, incomplete, or fractional serves to reinforce certain prejudices that people with developmental disabilities are partial, incomplete, or fractional. Such enacted myths produce disabled identifications that make the job of queer identification (indeed any other identification) impossibly difficult for people with disabilities. In short, if the intention of LRE may be nihilistically usurped through economic determinism, the intention of P P P may be nihilistically usurped through educator indifference and the material propagation of disability myths. More Glass Bits: Understanding Disability, "Homosexuality" and Identity as Educational and Institutional Practices In summary, theories designed to integrate people with developmental disabilities into schools and communities may be at best misinterpreted and at worst, conceptually flawed—especially when the inclusion of queer people with developmental disabilities is at stake. Therefore, it should not be surprising that "official" sex education curricula designed to encourage respectful interpersonal boundaries and promote healthy relationships often contain homophobic, heterosexist, heteronormative, and ableistic elements. These scenarios occur even in "apparently" progressive materials produced for people with developmental disabilities, as will be shortly uncovered. What is uncovered within these curricula (compulsory heterosexuality, heterosexism, ableism, etc.) is often referred to as the hidden curriculum (Apple, 1996; Pinar, 1994, 1998, 1999), which constitutes much of the latter part of this section. 16 Sex Education Curricula Formal sex education for persons with developmental disabilities began in the 1970's with three emphases: to help parents understand that their offspring are sexual beings, to build a body of sex education resources, and to establish policies and procedures for agencies and service providers (Kempton & Kahn, 1991). During the 1990s, the topics of sex education curricula expanded beyond the usual social-sexual skills to include sexual abuse prevention and the prevention of sexually transmitted diseases, including AIDS (McCarthy & Thompson, 1994; Scotti, Slack, Bowman, & Morris, 1996; Scotti et. al., 1996; Thompson, 1994). Since biological or mechanical aspects of heterosexual behaviours are emphasised throughout these curricula, some authors have argued that they are heterosexist and even ableist. For example, Whitehouse and McCabe (1997) found that most "sex education programs have tended to assume a heterosexual perspective, teaching heterosexuality as the only sexual option available to people with intellectual disabilities, rather than actually addressing the needs and circumstances of people with disabilities" (p. 230; see also McCarthy & Thompson, 1994; Thompson, 1994). Brown (1994) makes a similar point: In reviewing contemporary writing about sexuality...the reduction of sex to a biological imperative is challenged. In learning disability services, however, the notion lives on that sexual behaviour is natural and sufficiently pre-programmed to ensure that if impediments are removed people with learning disabilities will be able to enjoy heterosexual relationships. Sex education for people with learning disabilities tends to have focused on biological rather than social issues and to have assumed a heterosexist preference and a familial context for all relationships, even where neither seems applicable to the person's current or foreseeable future (Brown, 1995, p. 131). Horgos (1998, 2000) evaluated a popular and comprehensive sex education curriculum for persons with developmental disabilities currently on the BC Ministry of Education Recommended Resources List, namely Life Horizons II: The Moral, Social and Legal Aspects of Sexuality by Kempton (1988). Various B C school districts have purchased Life Horizons, and Horgos was particularly interested in determining if the curriculum "validates LGB students with intellectual disabilities in the same way as other students may feel validated by learning about sexuality" (p. 4). By analysing the location and content of the text and images of LGB persons throughout this sex education curriculum, she concluded that the curriculum: contained very little information about LGB issues. The information that was provided was mostly vague and was not provided consistently enough throughout the curriculum. The assessment of this curriculum shows that it does not provide validation to LGB students with intellectual disabilities. As a result, Life Horizons does not achieve its goal to help students improve their sexual health and foster healthy relationships (Horgos, 1998, p. 14). There are seemingly more progressive sex education curricula available, such as the Healthy Sexuality Series produced by the (YAI) Young Adult Institute in New York (1997). This series, consisting of three videos with accompanying picture cards and workbooks, addresses sexuality issues in a holistic manner. Sexual behaviour is portrayed in the context of relationships—lesbian, gay, and heterosexual. Couples of each type are shown negotiating safer sex, communicating preferences for specific sexual acts, as well as indicating ways to stop sexual behaviour. Nonetheless, it is telling that the gay and lesbian couples are "discreetly" placed at the end of the videotapes during "additional scenes." The "Everyday" Practices of (Educational) Institutionalization The detrimental legacy of institutional practice upon persons with disabilities is indeed profound (Ryan, 1987). Special educators work and teach within school environments. Such environments impact not only the kinds of curricula that get taught, but also the kinds of hidden curricula that are enforced: An educational system is in the business of producing differentiation; it produces inequalities of race, class, and gender in the normal (though not the official) course of doing business; an organization of parents knowledgeable about how educational inequalities are produced would be threatening; education like other institutions functioning nondemocratically in democratic society, depends on ignorance. The professional and administrative structures as well as the practices of professional and academic discourse interlock to prevent knowledge leaking out to form the social consciousness of those who do not participate [but whom are ultimately affected by] in the relations of ruling (emphases added; Smith, 1987; p. 219). Homophobia, heterosexism, heteronormativity, and ableism are a large part of these hidden curricula. These practices detrimentally affect everyone in these institutions: administrators; teachers (Harbeck, 1992, Khayatt, 1992, 1994a, 1997; Rensenbrink, 1996), and, most notably, students (Due, 1995; Gibson, 1989; Khayatt, 1994b, 1995; Rhoads, 1994, Sears, 1991, 1992). Rhoads (1994), for example, aptly demonstrated that "coming out of the closet" in college for non-handicapped persons is extremely difficult. Rhoads exposed homophobia and heterosexism on campus grounds and in academic curricula. One gay student recalled a professor during a human development course talking about behaviour modification as a way of "helping" homosexuals; he retorted: "I raised my hand to point out that there are some serious issues that we should talk about in relation to whether this kind of strategy is acceptable. You know, the idea of 'curing' gays" (p. 109). Rhoads discovered that publicly identifying as L G B , as this participant had in order to challenge his professor, served to make students vulnerable. At the same time, most college students with same-sex feelings and longings who did not openly discuss them experienced alienation, isolation, and thoughts of suicide. The effects of such institutional practices may be more salient in the public school system since students are younger, and thus more vulnerable. Horgos (2000, p. 8), for example, stated "LGB students are often harassed and/or assaulted in schools with little or no intervention from school staff" (Jordon, Vaughn, & Woodworth, 1997; Khayatt, 1994b, 1995; Monahan, 1994; Reis, 1996; Rivers, 1997; Walters & Hayes, 1998). If school systems do choose to intervene, they usually attempt to do so with as little controversy (and thus impact) as possible. Such interventions are often played out as anti-harassment or anti-discrimination workshops given to teachers and/or students, the goal of which is to provide safe schools for "everybody," which ostensibly includes students with developmental disabilities, lesbian, gay and bisexual (LGB) students, and LGB students with developmental disabilities. As long as "everybody" is being made safe, LGB students continue to commit suicide at alarming rates (Gibson, 1989; Khayatt, 1994b, 1995; Levine and Beeler, 1997), and people with developmental disabilities experience disproportionately high and unacceptable rates of physical, mental and sexual abuse (Sobsey, 1994). The moment policy/reform/practice reflects "special interests," efforts to eradicate it (under the noble guise of equality) are enacted. "Special" education remains special, it may be noted, since it does not reflect "powerful" special interest students, but especially powerless students. "Special interest" is perceived as a threat to the normal. Such was the case, for example, when, in the mid 1990's, the B C Teachers' Federation passed resolutions that dedicated the federation to anti-homophobic and anti-heterosexist measures (Farquharson, 1998, p. 1). The resolutions were passed, but there was much resistance from conservative and fundamentalist religious groups. Such resistance is but one example of the hidden curriculum being made visible. The unspoken and tacit nature of the hidden curriculum stifles educators' abilities to counter it. For example, any endorsement of these resolutions at the level of classroom interaction was almost seen as recruitment (especially if the educator "appeared" visibly as LGB, or proclaims him or herself so) or as disrespect for "family values" (MacKinnon, 1997, p. 91). The more vulnerable a group of individuals, the more potential harm that can be inflicted by discriminatory institutional practices. Needless to say, for LGB students with developmental disabilities, the risk for harm is very high. Special educators and paraprofessionals working within these systems are faced with limited choices in supporting LGB persons with developmental disabilities. If these educators openly support LGB students, often they become stigmatized and pay the very real emotional, physical, and financial costs, as Hingsburger (1993) once detailed. If these educators do not actively challenge the heterosexist norm, they may appear as though they support it. Such "tacit" sanctions of heterosexuality frequently occur in institutional settings (see, for example, Epstein, 1994; Harbeck, 1992; Khayatt, 1992, 1994a, 1994b, 1995, 1997; Woog, 1995). Finally, some special educators may eagerly campaign against any sexual expression for persons with developmental disabilities, or any same-sex identification or behaviour of students or other staff. How these educators see themselves with respect to their own sexuality, and the strategies they use to manage it are of critical importance in understanding how students with developmental disabilities learn and identify as sexual beings. ..•Still More Glass Bits: Understanding Disability. "Homosexuality" and Identity as Propagated Myths Obviously, the hidden curriculum that serves to limit same-sex expression and identification is not limited to (educational) institutions or its artifacts—formal courses, materials and programs; its constituents, reiteratively homophobia, heterosexism, heteronormativity, disability-phobia, ableism, and ablenormativity are perhaps most "alive and well" in people's attitudes, including people with developmental disabilities. In an effort to understand how these attitudes as practices operate, propagate, and 21 effectuate, there is a need to survey the literature of caregivers, teachers, parents, and people with developmental disabilities in regard to sexual diversity issues of persons with developmental disabilities. This is because the contextual elements for each group can be very different. Teachers, for example, typically have access to more information than caregivers and parents through in-services, district-wide libraries, additional professional development workshops, and post-secondary education. Obviously, teachers work in schools. Generally speaking, there are fewer resources available to caregivers; less training and educational standards are required. Caregivers may work in a variety of settings from very restrictive to least restrictive. Parents have varying degrees of connection with disability and social services. The point is that it is entirely possible that these three groups have different attitudes and beliefs with respect to homosexuality and persons with developmental disabilities4, and yet each may play a significant role in identity formation and sexual regulation in the lives of persons with developmental disabilities. Following this section is an overview of how people with developmental disabilities themselves think about sexuality and sexual diversity; finally, to close this chapter, I offer my research questions. Caregiver. Teacher and Parental Attitudes Toward Sexual Orientation Scotti et. al. (1996 a,b; see also Hingsburger 1993) explored caregiver attitudes towards sexual behaviour(s) of persons with developmental disabilities and reported that caregivers seem to "tolerate" masturbation the most, followed by heterosexual petting and kissing, then heterosexual oral sex, heterosexual intercourse, and finally, lumped into a LGB category, anything homosexual in nature. The authors observe that "a number of studies have consistently found that the staff members of residential facilities only condone less sexually explicit behaviours, such as hand-holding, kissing 22 and masturbation, and do not approve of behaviours such as intercourse or oral sex." (Scotti et al., 1996a, p. 250). This "toleration continuum" from least to most explicit sexual behaviour breaks down, not surprisingly, for any same-sex behaviour. "One interesting finding is that the participants found that... prolonged [heterosexual] kissing in public to be just as unacceptable as ... [any, presumably private] same gender activity" [emphasis added] (p. 260). Furthermore, "Other sexual behaviours, including same-gender activity, and risky sexual activities (including anal intercourse and intercourse without using condoms) were viewed as unacceptable" (p. 260). Notice how "risky sexual activities" are conflated with any "same gender activity." Wolfe (1997) conducted a study using qualitative and quantitative methods exploring relationships between teachers' and school administrators' values, and issues of sexuality and developmental disability. Although Wolfe did not conceptualize sexual expressions on a continuum, her results were similar to those of Scotti et. al. (1996a). She found among teachers "the belief that sexual intercourse was not preferable, [to less "intrusive" sexual acts like hand-holding, hugging, kissing, etc.] but [was] probably occurring among their students" (p. 77). Wolfe posed all her questions within the framework of the (adaptively defined) levels of disability, namely moderate and severe disabilities. Again not surprisingly, heterosexuality as a sexual practice was rated as 80% appropriate for people with moderate disabilities; homosexuality, as 19% appropriate. For persons with severe disabilities, heterosexuality was assessed as 46% appropriate; homosexuality, as 17%. Relatedly, Brantlinger (1988) revealed that teachers perceived their values to be significantly different from those of their students with developmental disabilities, and Brantlinger (1992) found that "although teachers believed students would benefit from comprehensive and realistic training, [around 4 Of course, there may be differences within these groups, as well. family life planning and sexuality education] they feared adverse reactions from students, parents, and administrators" (p. 32). Parental attitudes vary with respect to the sexuality of their offspring, and to some extent the literature does, too. On the one hand, many parents are tagged as being "overly protective" and so inhibit any discussion and/or sexual expression. Some research seems to indicate that these designations are often fallacious assumptions made by paraprofessionals and professionals since, in fact, "younger parents appear to be more liberal" (Squire, 1989; quoted in Heyman & Huckle, 1995). Pendler and Hingsburger (1991) note that "parents often have less punitive and restrictive attitudes towards sexual behaviour, than do group home staff." On the other hand: Surveys of the parental attitudes to the sexuality of their offspring are fairly consistent, albeit small scale (Goodman Bundar, & Lesh, 1971; Fischer & Krajicek 1974; Kempton, 1979; Squire, 1989). Generally, they concern anxieties about the risk of being molested or exploited, and daughters becoming pregnant, about getting into trouble with the law (especially males) and about frustration at not being able to achieve full sexual roles (Rose & Jones, 1994, p. 33). What is clear is that parents have to work within a service system to support their children. Rose and Jones (1994) elucidate how parental attitudes towards their children's sexualities are part of an interdependent relationship between themselves and various service providers: When parents are thrown into discussion about sexuality through the emergence of a "problem" with their son or daughter, it should not be surprising if their attitudes tend towards minimizing risk, and consequent reduction of freedom for their offspring (p. 28). So, in some ways for people with developmental disabilities there is the potential that their sexuality becomes a politicized terrain between the interplay of parents and social service structures. Persons with Developmental Disabilities: Attitudes Toward Same-Sex Behaviour and LGB Identification Persons with developmental disabilities may have internalized some of the caregiver attitudes about sexuality in general that Scotti et. al. (1996a, b) discovered (i.e., that sexual behaviour that is most permissible is the least explicit): Heshusius (1987) concluded from a review of American research that adults' [with developmental disabilities] attitudes towards sexuality were overwhelmingly positive. However, most of the responses in these studies were qualified in some way. Many adults feel that sexual relationships should only occur in marriage, or indicated support for expressions of relationships, which did not involve full sexual intercourse. Other studies have suggested that adults often have negative attitudes to their own sexuality, for example, regarding it as dirty or nasty [emphases added] (quoted in Heyman & Huckle, 1995, p. 141) McCabe & Schreck (1992) conducted a review of research on the sexual knowledge, experience, feelings, and needs of persons with developmental disabilities before sex education. The authors report that the review indicated that, typically, research participants report ambivalent feelings about sexuality and definite negative attitudes towards homosexuality: "37% of respondents [with developmental disabilities] regarded masturbation as wrong; 31% viewed heterosexual intercourse as wrong; 86% indicated that homosexuality was wrong..The strongest taboo was on homosexual behaviour" (p. 77, emphasis added). Similarly, McCabe (1993) and McCabe and Cummins (1996) found that "people with intellectual disabilities were more likely to have negative feelings in relation to a range of sexual experiences including.... homosexuality" (p. 19, emphasis added). Brantlinger (1985) found that several adolescents with disabilities thought that sex was a "dirty and nasty business," and many disapproved of homosexuality. Lunsky and Konstanareas (1998) interviewed people with mental retardation and people with autism around topics of sexuality and compared overall approval ratings 25 with those of non-disabled people they interviewed. Their results were consistent with other researchers; same-sex expression was least favoured. Non-disabled participants' approval ratings were much higher than their disabled counter parts; the greatest differences in ratings were in the following activities: two women holding hands, two men embracing, two men kissing, and two women getting married (p. 29). Incidentally, Lunsky and Konstanareas found that "of the two groups with developmental disabilities, the participants with mental retardation were significantly less accepting of the socio-sexual situations than were the participants with autism" (p.30). Angrosino (1992, 1997) conducted an ethnography in an American residential care centre. He interviewed several residents over a period of months and, in accord with most researchers, found that persons with developmental disabilities "do not admit to an awareness of the many choices involved in adult sexuality; they scoff at the possibility of consensual homosexuality" (emphasis added; Angrosino, 1997, p. 107). LGB Persons with Developmental Disabilities Given that some special educators, caregivers, and even (apparently heterosexual) persons with developmental disabilities do not support same-sex behaviour on the part of people with developmental disabilities, it is not surprising that even the possibility of LGB persons with developmental disabilities is rarely mentioned in the literature (for exceptions see Harris, 1997; Heler, 1996, 1997; Mann, 1985; McCarthy & Thompson, 1994; Shoultz, 1995; Thompson, 1994). In order to understand what it is to create an identity as both LGB and developmentally disabled, these individuals must be included in the research. The overriding inquiry here is: given that many theoretical and material institutional barriers are erected to prevent such identifications, how is it that certain individuals belied the odds and have "come out?" How is it that people manage the complexities of queer and disabled identification? 26 Research Questions To recapitulate, the purpose of this study is to understand the everyday world of G B men who are labelled with a developmental disability. One of our most basic human rights is the right to choose the kinds of relationships and communities in which to partake—the right to be self-identified (British Columbia Human Rights Commission, 2000). People with developmental disabilities often face lives in which their human rights are curtailed—sometimes subtly, sometimes overtly. LGB folks are making significant progress in terms of legal court challenges, but at the same time, they too must fight for basic human rights (British Columbia Human Rights Commission, 2000, June). In light of culturally-ingrained homophobia and disability prejudices, self-identified gay persons with disabilities are at significant risk. Because of the precariousness associated with these identifications, it is little wonder that there are so few individuals willing to tirelessly resist disabling regimes in order 'to be themselves' (Shoultz 1995). So, the aim here is to respectfully validate such identities, and to explore the unfortunately commonplace difficulties and adversities of such identity negotiation. This overall aim gave rise to the following issue questions (Stake, 1995, p. 16). They are: • How do men with a label of developmental disability come to self-identify as gay or bisexual (GB)? • What does it mean "to be gay/bisexual" to these persons? • How do such people characterize their participation in LGB communities and communities of people with disabilities? Being diagnosed with a developmental disability inevitably secures one a relationship with the helping professions. In conducting this research, it became plain that these relationships were critical a part of key participants' lives. Therefore, I posed the following questions concerning caregivers: • How is it possible to respectfully support gay men with developmental disabilities? • How do caregivers conceptualise their own sexuality, and how do such conceptions impact the kind of care that is provided to the key participants? 2 7 CHAPTER TWO The Kaleidoscopic Lens (or The Theoretical Framework): Identities as Communal Praxis The research questions arise from gaps in the theory and practice of special education. Before this inquiry begins, however, it is necessary to situate this project within larger theoretical conceptions of identity, community, and participation. If the ably prejudiced integration principles (normalization, LRE and PPP) , the biased sex education curricula, the hidden curriculum, and the heterosexist caregiver attitudes represent the kaleidoscope's glass bits, then it is equally important to appreciate the lenses through which these glass bits are viewed. These unsettling portraits of self-identified G B men with developmental disabilities, these kaleidoscopic representations, need to be understood as a function of the interaction between the glass bits and the (often tacit and seemingly unproblematic) "everyday" theoretical assumptions about identity, agency, and community. What follows here is an exploration of the theoretical terrain of disability, developmental disability, and sexuality. The intent is to highlight particular "ways of knowing" that (ideally) advance the cause of LGB persons with developmental disabilities. To this end, three theoretical areas will be explored. Firstly, Goffman's (1963) stigma management and Lave and Wenger's (1991) Legitimate Peripheral Participation are complementary frameworks useful to describe such complex identities as GB men with developmental disabilities. Secondly, disability theory and queer theory are cultural standpoint theories, which problematize common assumptions about identity. If it is helpful to the reader, Goffman (1963) and Lave and Wenger (1991) may be thought of as providing ways to describe identity management strategies. Alternatively, disability and queer theorists provide ways to investigate how those strategies came to be or what larger practices implicate particular management schemes, and what relevance these practices have to notions of disabled and queer identification. Finally, Smith's institutional ethnography offers the researcher (and reader) a practical way of thinking about relationships between disability and queer oppression as institutional regimes and the "everyday" management of such oppressions. Stigma: The Management of Identity Stigma is a classic and influential piece in which Goffman (1963) first proposed a detailed framework to analyze how social prejudice operates between and among people in the everyday. He suggested that individuals' community participation and membership is circumscribed by stigma, which is defined as "an attribute that is deeply discrediting, but it should be seen that a language of relationships, not attributes, is really needed" (p. 3). Goffman's premise is that, during interactions between stigmatized and non-stigmatized persons, labelled people must somehow "control" or manage their personal information of a discrediting or discreditable nature: The term stigma and its synonyms conceal a double perspective: does the stigmatized individual assume his differentness is known about already or is evident on the spot, or does he assume it is neither known about by those present nor immediately perceivable by them? In the first case one deals with the plight of the discredited, in the second with that of the discreditable, [emphases in original] (Goffman, 1963; p. 4). So, individuals with visible disabilities are automatically discredited by society; alternatively, individuals with invisible disabilities (who do not disclose their "condition") are discreditable. Perhaps uniquely, people with developmental disabilities may be described as being potentially both discrediting and discreditable depending upon how their particular "disability" manifests. Whatever the nature of a stigma, Goffman suggests that its effects are totalitarian—once stigmatized, one can never "truly" become a non-stigmatized person. The non-stigmatized have never had a history in relation to a (particular) defect. Individuals with such a history do not transform into non-stigmatized. They always maintain connection to the specific "flaw" (Goffman, 1963; p. 9), and in this way remain stigmatized. Being stigmatized is not only an outcome of being devalued, but it also sets occasion to perpetually denigrate persons. In this sense, a stigma is both cause and effect of "lesser valued social roles," to use Wolfensberger's term. Stigma and Community Participation Since it is not possible to "overcome" a stigma, one can only "lie" about it or "accept" a diminished social role; consequently, the kinds of participation available to the stigmatized are severely restricted. Thus, persons with developmental disabilities are limited in the kinds of activities and communities in which they can participate, not because of any "learning" or "biological" deficit, but because they are stigmatized. Persons with disabilities, according to Goffman, depend on the non-stigmatized to define their participation in community. The non-stigmatized may "grant" temporary courtesy membership. A courtesy membership can be withdrawn at any time by the non-stigmatized; the stigmatized are never truly accepted—or, in the words of Billie Holiday, "You can help yourself, but don't take too much." In the meantime, the stigmatized may believe that their participation is sanctioned, is legitimate: Given the fact that normals in many given situations extend the courtesy of treating his defect as if it were of no concern, and that the stigmatized is likely to feel that underneath it all he is a normal human being like anyone else, the stigmatized can be expected to allow himself sometimes to be taken in and to believe that he is more accepted than he is. He will then attempt to participate socially in areas of contact, which others feel are not his proper place (Goffman, 1963, p. 119). The processes may also be reversed. A community of stigmatized individuals may bestow courtesy membership upon a "wise" non-stigmatized person, which may be the case for helping professionals. In becoming wise, a person must bear part of the stigma. Particularly in public contexts, the stigmatized are expected to accept, even be grateful for the shared presence with the non-stigmatized. Sadly, it is only when the stigmatized do not perform immediate and gushing approval that the non-stigmatized discern the fact that differing social processes are operating. David Hingsburger (2001), for example, recalled a situation in which he came upon a previous "client" (an individual with a developmental disability) waiting at a bus stop. David was quite excited to see her since he had taught her "bus-riding skills," and reported being taken aback when she politely but curtly acknowledged him. After a time, he realized that he was not meeting an old friend, but someone for whom he had provided professional educative services. His point is that their reunion would have gone unnoticed had she enthusiastically embraced him; the stigma would have been operating "normally." Such "forced" acceptance may often "cause" the non-stigmatized to reciprocate, to act grateful. Goffman refers to these situations of forced acceptance and necessary reciprocation as phantom acceptance (p. 122). The only kind of participation unique to the stigmatized is that of secondary gains. That is, having a stigma allows one certain allowances that "normals" are either not entitled to, or expected to perform for themselves. Further, a stigma provides "an excuse for ill success that has come his way for other reasons" (p. 10). Given the severely compromised range of participation opportunities afforded the stigmatized, particularly those with developmental disabilities, any concept of "gains" seems trite. Goffman's stigma theory has provided a useful framework for some pioneering research with respect to people with developmental disabilities. Perhaps the most famous is Edgerton's (1967, 1993) famous longitudinal qualitative study entitled Cloak of Competence regarding the deinstitutionalization of people with developmental disabilities. In addition, Goffman is cited by Wolfensberger (1972) in Normalization, and his work remains a significant contribution for disability theorists in this area (see, for example, Dudley, 1997). Because Goffman's model is robust and capable of describing a panorama of interacting players, and because he connects notions of community participation to identity management, his theory will be heavily drawn upon during this analysis. At the same time, stigma theory has some shortcomings. Disability theorists who critique Goffman's work consistently point to his failure to account for persons challenging the norm, or to conceive of identity options as being more than discrediting or discreditable. Hirsch (1995) criticizes Goffman's position "because it 'assumes that in Western cultures a disability will always be interpreted as a stigma for the individual to cope with'" [emphases added] (Hirsch, 1995 in Linton, 1998, p. 101). In an ironic turn, Corbett (1994) a disability theorist, redefines stigma. A stigma occurs when a person with a disability thinks "negatively" about her or his disability, as a source of shame. She suggests "passing" is a mark of se/f-stigmatization, that is "in fighting to appear normal, when this requires supreme effort and stress, disabled people are stigmatizing themselves" (Corbett, 1994, p. 346). Passing denies the existence of a disability, and a disabled identity is not a symbol of humiliation or embarrassment; rather, for Corbett, it is a "proud label." Legitimate Peripheral Participation: Identification and Community Lave and Wenger's (1991) Legitimate Peripheral Participation (LPP) theory complements well Goffman's notions of identity management and stigma. Similar to Goffman, a sociologist, Lave and Wenger, educational anthropologists, are interested in describing learning processes in much broader terms than cognitive psychology would allow. By analysing the educative practices of various groups, such as tailors, midwives, meat cutters, and members of Alcoholics Anonymous, Lave and Wenger (1991) constructed L P P . With its roots in sociocultural theory, Lave and Wenger defined L P P as "learners [who] inevitably participate in communities of practitioners and that the mastery of knowledge and skill requires new-comers to move toward full participation in the sociocultural practices of community" (p. 29). Membership in community is identification, and identification is learning. "Learning and a sense of identity are inseparable: They are aspects of the same phenomenon" (p. 115). Participants' membership cycles through myriad roles in the community. Goffman (1963) refers to such shifting as "oscillating membership." New-comers are simultaneously old-timers depending upon context, although usually membership begins "on the sidelines" (legitimate peripheral participation). Lave and Wenger explain: Activities, tasks, functions do not exist in isolation; they are part of broader systems of relations in which they have meaning. These systems of relations arise out of and are reproduced and developed within social communities, which are in part systems of relations among persons. The person is defined by as well as defines these relations... Viewing learning as legitimate peripheral participation means that learning is not merely a condition for membership, but is itself an evolving form of membership (emphases added, Lave & Wenger, 1991, p. 53). Certain communities legitimate certain practices and identities, while others may not validate those same practices. Since identity is a function of community and membership therein, community is a fundamental aspect of LPP . For persons with developmental disabilities, Lave and Wenger's L P P opens up such inquiries as: If learning occurs in community, how is it possible for persons with developmental disabilities to learn if they are excluded from community? If persons with disabilities are segregated, with whom and with which practices are they identifying? Can institutions or staffed residences be called communities? Illegitimate Non-Participation, Pis-Identification and Community 33 Since L P P and community are integrally related to identity, it is germane to define notions of community here, especially given the history of institutionalization for persons with developmental disabilities: In the disability field, there has been a lot of discussion about the importance of community integration and community membership for people with developmental disabilities. At the same time, there has been little analysis of what is meant by community.... For many individuals, the sense of community is derived not so much within a purely geographic-political context, such as a small town or village, but rather within their social networks, which may be linked to place (e.g. neighbourhood), work, religion, leisure interests, kinships, social class and the like (Walker, 1995; p. 176). Authors from the Roeher Institute, a premier policy and research facility for people with developmental disabilities in Canada, articulate community as: More often discussed in terms of people (social networks, self-help groups, relationships, sharing, co-operation, connections, friendships), or in abstract terms related to a sense of community (inclusion, diversity, interdependence, commitment, familiarity, participation, acceptance, equal opportunity) (The G. Allen Roeher Institute, 1990; p. 2). Notice the Roeher authors use the words "social networks," "sharing," "co-operation," "acceptance," and "equal opportunity." Walker (1995) speaks of "leisure interests" and "work." Taken together, these words speak to kinds of agency and choice not usually found in institutions. Institutional "communities," like those experienced by persons with disabilities in North American contexts (and hopefully not currently so) lack such agency, and therefore, L P P in these settings may be a form of what Hodges calls (1998) "dis-identification" or "non-participation:" Non-participation constitutes an identificatory moment where a person is accommodating in participation and yet is experiencing an exclusion from any "normative" or unproblematic identification with practice (Hodges, 1998, p. 272). L P P analyses can uncover tensions in participation. A community of practice may provide the necessary rituals for conferring membership but new-comers may not feel validated or privately resist conferral, or a community may not give access or credence to new-comers but at the same time allow them to be physically (and peripherally) present. Lave and Wenger (1991) intended L P P to be used holistically, as a single and binding entity. In other words, illegitimate participation, non-participation, and dis-identification were concepts which they declared specifically not to be used in their theory; however, I concur that Hodges's notions serve to clarify the complexities of L P P , and ultimately provide a richer picture of identity as community (non)-participation. Disability Theory If Lave and Wenger (1991) and Goffman (1963) are concerned with the nature of disability management, then disability theorists are concerned with disability constitution, construction, and constituent(s). Disability theorists almost unanimously frame "disability" as a collective and social experience rather than an individual or medical one. It is the disabling conditions in the environment, conditions of able-bodied controlled physical, social, financial, relational, sexual and vocational spaces/opportunities that "cause" impairments and disabilities. Oliver (1990, 1992, 1996) suggests that disability is experienced as forms and degrees of social exclusion, although these forms vary. Exclusion occurs since able-bodied people tend to characterize the "problem" of disability as residing within an individual. Able-bodied persons tend not to attribute disability to ill-suited or inflexible environments, for example; therefore, little effort is expended to make such environments more inclusive and accessible. These ideological infelicities occur even in theoretical formulations of disability: While it cannot be claimed that there has been much grand theorizing about disability, it can be argued that almost all studies of disability have a grand theory underpinning them. That grand theory can be characterized as the personal tragedy theory of disability. It has fallen to disabled people themselves to provide both critiques of this implicit theory and to construct their own alternatives, which might be called social oppression theory (Oliver, 1990; p. 1). The Social Model of Disability The social model (as it is most commonly referred to) or social theory of impairment, sometimes referred to as social oppression theory, was first proposed by Abberely (1987), but is probably better known in the work of Oliver (1990, 1992, 1996), and Oliver and Zarbum (1989). It should be noted from the outset that most of the writing about the social model has appeared in the British journal Disability and Society, and most theorists who espouse and have developed the model are also British, although as of late this is changing somewhat. This work differs from the way disability theory has been articulated in the U.S. with respect to the case of those with developmental disabilities, as we shall see. The social model argues that as an entity, disability is socially constructed, and that impairment is as well. More importantly, the social model asserts that the origin of both these constructions is material (Abberley, 1987, p. 12). For example, government policies that severely limit the amount of financial compensation awarded to people with developmental disabilities, "cause" other kinds of hardships for these people since they cannot afford an adequate standard of living. Disability Theory and Persons with Developmental Disabilities. For persons with developmental disabilities, not only "able-bodied" society, but even the larger disability movement, seems unfriendly and unwelcoming. "Even the well-intentioned disabilities movement has not yet reached out to embrace persons with [developmental disabilities] ....as integral members of their counsels, as many persons once labelled 'mentally retarded'...have pointed out with some bitterness" (Dudley, 1997; p. vii). Barb Goode, a self-advocate with a developmental disability from Vancouver, BC , personally recalls such an experience: A few years ago I was active with DAWN (Disabled Women's Network). I think the main reason that I dropped out was because, a lot of people don't agree with me, but this is the way I feel, a lot of other disabled groups don't want developmentally handicapped people involved. And they don't want us involved because they feel that we are not at the same level as them. Like their disability is more noticeable, and ours isn't noticeable, so to them —I think they feel they're more superior (Dybwad & Bersani, 1996; p. 45). Similarly, some theorists note that the same is true of disability theory: theories about disability are really theories about physical disability. "Disability becomes, in effect, a synonym for physical disability in much of the writing about the disability rights movement. It is as though some writers decide that the way to avoid the difficulty of fitting in severely and profoundly mentally retarded under the umbrella concept of social construction, is to decide arbitrarily that they are no longer even disabled" (Ferguson, 1990, p. 207). For Ferguson (1990, 1996) this theoretical aporia is the weakness of the social constructivist paradigm of disability theory (i.e., the social model) with respect to persons with developmental disabilities, and those with severe to profound needs in particular, which is responsible for the perception that biology has usurped socio-cultural factors, "where culture seems beside the point; where physiology has gone so far awry that it threatens to overwhelm the social context" (p. 207). Most often, the experiences of those with developmental or intellectual disabilities, such as autism, Asperger's syndrome, mental handicap, or mental retardation are not mentioned under the rubric of disability theory (Ferguson, 1990, 1996). This omission occurs despite the fact that "the vicissitudes in the life of the mentally retarded individual result primarily from the status and role assigned him" [sic] (Farber, 1968, p. 15; quoted in Oliver, 1990, p.15). Ferguson's point (1990, 1996) is significant: disability theorists for the large part exclude folks with developmental disabilities because much theorizing about disability is based on a social constructivist paradigm. Social constructivism, in Ferguson's view, tends to posit stable, uncomplicated, and essentialized identities (see also Slee, 1997, p. 409, and Slee & Cook, 1999). In such positioning, complexities are lost—complexities of competing identities between and within individuals. It is almost as if social constructivism erases the other differences (e.g. sexual orientation, gender, race, ethnicity, social class, even kinds and degrees of disabilities, etc.) of persons with disabilities. What is required, Ferguson concludes, is a paradigm that accounts for how disability as "different" differences are produced, not a paradigm that reduces disability to a single phenomenon. Self-Advocacy Movement and People with Developmental Disabilities. The failure of disability activists and theorists to capture the complexities and needs of people with developmental disabilities has at least partially set the stage for the self-advocacy movement. The self-advocacy movement is paradigmatically very different from the disability movement. Self-advocacy, as a community activist movement, is not the appropriation of the tactics and strategies from the disability movement. Disability theorists do not explicitly espouse a common disabling experience, but they do espouse a (relatively) common underlying stratagem to ameliorate those experiences. Disability theorists frequently point out differences between able-bodied notions and disabled notions of disability (see Oliver, 1990). Then, they trace these differences within policy and practices of rehabilitation. In doing so, the categories of disability and its constitutive (often unspoken) other, ability, are reified. In stark contrast, consider the slogan of the self-advocacy movement: "Label Jars Not People" (McDonagh, 2000). Self-advocacy activists are calling for the end of labels, categories, and identities—or at least a call to label only inanimate objects, not people. The seeming simplicity of the slogan belies a greater philosophical and tactical implication, namely an acknowledgement of the limits of identity and political action around identity. That is, 38 developmental disability oppression is to be battled by rejecting the institutional practices that produce it, beginning with the rejection of the label itself. In these ways, the self-advocacy movement has much in common with queer theorists. Queer Theory That a movement of people with developmental disabilities may be philosophically aligned with queer theorists and activists may seem curious. Queer theory has been criticized for its penchant for obtuseness, and therefore its inaccessibility (see Bryson & de Castelle 1993, 1996 for cogent critiques). Yet, at its heart, queer theory, like the writings from the self-advocacy movement, is a political theory. Queer theorists typically elucidate the limits of identity as political action in the same manner as the theories of the self-advocacy movement, even as the kinds of identities within its scope are different. Most often queer theory is concerned with the construct of sexual orientation, and sometimes gender (see Butler, 1990, 1991). As chronicled in the popular book edited by Warner (1993), Fear of a Queer Planet, parts of queer theory are rooted in re-interpretations of psychoanalytic theory and situated largely in literary studies (see especially Butler, 1990,1991; Sedgwick, 1990,1993). Within academic worlds, lesbian and gay studies have embraced with little or modest critique post-et. al. theories of (homo)sexual identity as "performance" rendered under the umbrella of queer theory (see especially Seidman, 1993 orTrask, 1996). Queer theory places desire, and especially sexual desire, within its framework. Queer theory then, posits only identificatory moments and partial identities. Identity, accordingly, is complex and always dynamic, always transforming and changing. In short, identity is not stable either as an ontological or ideological construct. Queer theory is rooted in post-structural deconstructions of the stable and coherent unitary subject of modernist ontologies. Within its terms, any gender is "a drag," and so-called deviant sexual identities, such as that of "the homosexual," are re-read and re-written as identity scripted by culture (see especially Terry, 1991), adorned with artefacts and performed within a dialogical social sphere populated with other performances and characters. Identity must be understood as performatively linking signifiers of social identity with duties to act: identity operates performatively in a practical and temporary space, a situation, if you will (Patton, 1994, p. 84). Although people who identify as female experience oppression, often the totalizing effects of such oppression are not easily connected with the identification. The "female," for example, is so deeply rooted in the "natural" that the oppressive practices that re/produce the (compulsory heterosexual) female may be undetected. On the other hand, LGB identifications are rooted in the un/natural, so oppressive practices that produce them are much more apparent. Yet, the kinds, degrees and experiences of oppressions based on the identification, developmental disability, are inescapable, indefatigable, and incredible. Certainly, within many current cultural contexts, if there were a human pecking order, almost invariably people with developmental disabilities would be on the bottom. So, the rejection of the category, developmental disability, by people with developmental disabilities, and of categories altogether seems easily desirable. Linda La Course characterises the situation thusly: "If I'm a self-advocate, when do I become an advocate?" (Dybwad & Bersani, 1996; p. 28). Some Cautionary Notes. To discuss disability as performance does not imply there are no biological bases of disability. Fetal Alcohol Syndrome, for example, has a definite biological "cause" (Aase, 1994). What is at issue here is how identifications of disability come to be. Although it is commonplace within queer theory to speak of homosexuality as re/produced experiences, as performances, it is not commonplace to speak of disability in those terms. One of the dangers in conceptualising disability as performance is that the physical and materialistic pains that people with disabilities experience may be minimized. My aim in drawing upon these constructs is exactly the opposite; through the analysis of our own implication within disabling regimes, this research can produce a more comprehensive account of the lives of those living with a developmental disability. Performances are (usually) not conscious. Often, we act without being aware of our script—we are "unthinkingly" natural. It is these very conceptions of natural in terms of disability and homosexuality that are being investigated here. Butler states: Drag constitutes the mundane way in which genders are appropriated, theatricalized, worn, and done; it implies that all gendering is a kind of impersonation and approximation. If this is true, it seems, there is no original or primary gender that drag imitates, but gender is a kind of imitation for which there is no original (emphases added, 1991, p. 21). The Material or Critical Queer. Morton (1996) makes a distinction helpful to inquiry between experiential and intellectual understandings of queer. He argues that experiential queer theory is primarily constituted by descriptions of "various and emerging cultural groups, and [argues that] its goal is to give voice to their un- or little-known experience" (p. xvi). This is of interest here, but in a rather limited sense. Morton argues that critical queer theory "moves beyond experience and understands the materiality of culture as the historical conditions and the social and economic—the material—structures which in fact produce that experience" (p. xvi; see also Powell et. al., 1996). Morton seeks to premise the language of queer theory with the materiality of Marxist theory: "that desire is not so much repressed and in need of liberation as it is produced and regulated, and thus its production and regulation are in urgent need of investigation" (p. 9). Simply stated, desire itself is not devoid of material reality; that which we desire, repress and act out or upon is as much a product of everyday conditions as anything. Desire is produced, in a Marxist ideological sense: A materialist critique will investigate the very terms of this "producing" (positive or 41 negative) and will therefore connect questions of sexuality and sexual orientation not to morality but to the politics of class and other struggles against oppression and to ideology, of which morality is one expression (Morton, 1996, p. 19). Exploring the nexus of developmental disability and homosexuality is not only what is at issue here. What is also of interest is exploring the re/productions of their constituent and material practices. Institutional Ethnography Although this project was not conceptualized as an institutional ethnography (Smith 1987, 1990, 1999), several of Smith's theoretical precepts are of particular import here. Smith constructed a feminist neo-Marxist sociology (so in this way she is also a materialist theorist) which occasioned the creation of her particular methodology, namely institutional ethnography. As a method of social inquiry, diverse researchers have since used her approach (Campbell & Manicom, 1995). At the heart of her method, she offers a way to problematize the "everyday," to uncover common-sense and oppressive hegemonies, to understand how the "naturalness" of life serves to organize the "unnaturalness" of such things as queer identifications of people with developmental disabilities. To this end, Smith speaks of lines of fault defined as times and moments where "everyday" explanations "don't cut it"—points where colloquial words are inadequate. So begins our suspicion, however fleeting, that there is something other than the ordinariness of life that is shaping and organising our behaviours, indeed our identities. Smith (1987) refers to these "something's" as ruling relations. It is from these moments that inquiry begins: From the discovery of a point of rupture in my/our experience as woman/women within the social forms of consciousness—the culture or ideology of our society—in relation to the world known otherwise, the world directly felt, sensed, responded to, prior to its social expression (p. 49). Khayatt (1992) argues that these kinds of splits are visible in interview data from her research on Lesbian Teachers, regarding "coming out:" Three women talked about feelings for which they had no explanation, no language, and therefore they had difficulty identifying what was happening to them (p. 111). Institutional ethnography involves research in lived environments; indeed Smith (1987) argues that in the everyday lies the enacting and enforcing of policies, prejudices, and privileges by the "ruling apparatus." Even researchers themselves may experience such breaks. For example, Limerick, Burgess-Limerick, and Grace (1996) experienced ruptures, not in formulating questions or research foci, but during data collection: Despite the range of interview styles, the researchers experienced similar points of rupture. That is each researcher experienced profound contradictions between their own lived experience of interviewing and the dominant interviewing paradigm. These points of rupture raised similar concerns for each of the researchers regarding the frames of reference conventionally used in research interviews (Limerick et. al., 1996, p. 452). That Limerick et. al. (1996) speak of "the dominant interviewing paradigm" is telling. Smith first proposed her framework when feminist scholars were beginning to question the dominant and masculinist paradigm within social sciences, which included how masculine hegemony biased even social scientific tools and inquiry protocols. To attempt to "see things as they are," Smith suggested that methods be "practical:" Rather than taking up issues and problems as they have been defined and established in the discipline, the aim is to explicate the actual social processes and practices organizing people's everyday experience from a standpoint of the everyday world (Smith, 1987, p. 151). Indeed, Smith repeatedly stressed this point: The idea of an institutional ethnography emphasizes that the inquiry is one of discovering "how things work", "how they are actually put together." The notion of an ethnography lays stress on the project of being faithful to the actualities of social organization and relations (Smith, 1987, p. 147). There are several advantages that Smith can offer this project, although in some ways various theorists have already articulated some of her ideas here—albeit using different terminology. This research focuses upon the complex identity management of self-identified G B men with developmental disabilities. Within North American contexts at least, it is nearly impossible to talk of people with disabilities without talking about how ameliorative regimes continually impact their lives. In some senses I believe that any ethnographic researcher who takes identity practices as his topic needs to consider the project as an institutional ethnography, since the ruling apparatus helps to organize all identities. To theorize about identity without connecting it to ruling relations may be an example of what Morton (1996) refers to as "experiential" identity work, the theoretical tourist. Being a theoretical sightseer may be considered to be especially trite when the terrain is both new and arduous—when the work is primarily exploratory in nature, as is the case here. The first research forays into a largely under-theorized area should be as comprehensive and meaningful as possible, so as to lay way for future noteworthy projects. In other words, Smith offers a different way of thinking about materialist queer theory. What is at stake within materialist queer theory is not only performance of repressed desire, but also "performance" of the ruling apparatus. Consequently, what we see on the ground are complicated identities that consist of the interplay between desire and ruling relations. Performance is as much the ruling relations, (the "proof of them so to speak), as it is internalized (and acted out) repressions. Finally, because Smith recognizes that ruling relations serve to stifle, confuse, and frustrate even the most "cognitively-able" among us, an investigation that includes institutional practices as constitutively related to identity may present alternative and more comprehensive accounts of people with developmental disabilities and their oft-referred to "behaviour problems," as we shall see in the concluding chapter. And Now a Re/turn to our Kaleidoscope... We now have our glass bits, namely the theoretical and everyday practices of special education within schools and communities, and we have our kaleidoscopic lens, namely an amalgam of the theories of stigma, legitimate peripheral participation, disability, queer, and institutional ethnography. Within this framework, it cannot hurt to (re)stress the materialist perspective that is the over-riding tenet. What remains then, are the instructions—how to use the kaleidoscope, how to re/turn the lens. 45 CHAPTER THREE Method of the Inquiry (aka Kaleidoscope Instructions) The primary methodologies utilised here were qualitative and collaborative in nature (Lather, 1991; Oliver, 1990, 1992, 1996; Smith 1987, 1999). This project includes two distinct, but interrelated, research strands. First, individual semi-structured interviews of self-identified G B persons with developmental disabilities were conducted. Secondly, interviews were conducted with relevant community personnel, including general community resource staff, support group facilitators, and direct caregivers. For clarity, I refer to these two groups as key participants and supporting participants, respectively. In addition, a number pertinent background documents pertaining to sexuality and/or developmental disability were collected and analyzed. These materials included a broad scope of sexuality policies and related documents for persons with developmental disabilities culled from a number of agencies, including the B C Ministry for Children and Families; The LGB Centre of Vancouver; Sunny Hill Sexual Resource Network; and local, national and international community living agencies. The documents provided traces of the construction of sexuality and developmental disability in community and institutional settings. As such, documentary and archival data embodied a substantial piece in the investigation, although their representation here is negligible and quite secondary to the key participants' interviews. An extended piece on policy analysis is beyond the scope of the current project, so for this in-depth analysis, the reader is referred to Thompson, (in press-a). The interviews with supporting caregivers provided vital contextual information upon which key participants' stories are offered; however, supporting participants provided insightful analyses not only into identity processes, but also how to facilitate queer 46 and/or questioning identifications in a respectful and healthy manner. Their participation constituted an imperative part of the identity process of these men, and so an extensive analysis of supportive practice was completed. Log ic of Inquiry Ethics as Method Rather than designing a method from any explicitly theoretical frame, this method was designed in a much simpler and more practical way (Smith 1987, 1999; Taylor & Bogdan, 1998). My method evolved during the course of the project. Most qualitative researchers agree that at least some methodological aspects emerge as much as (or more) from fieldwork as from pre-planned design (Miles & Huberman, 1994; Taylor & Bogdan, 1998). The question here is: how did the method evolve? In keeping with my first commitment to the key participants and the practical nature of this method, I chose to use situational ethics (Lyons, 1990) as my guide. Although research techniques here were fairly standard, it was during the interviews, during key participant selection, etc., that ethical dilemmas presented themselves. As I explicate the method, I elucidate the ethical dilemmas and how I chose to resolve them. In-depth semi-structured interviews were chosen as the main methodological technique for several reasons (Taylor & Bogdan, 1998). I was interested in a broad range of key participants to construct a robust account of such complex identity management. Locating self-identified GB men with developmental disabilities willing to participate in the study was not easy. Therefore, it was necessary to travel over a wide geographical area, which included the mainland of British Columbia, Vancouver Island, and down the West Coast of the United States. In addition, interviews are well-suited to situations in which the topic and questions are well-defined (Taylor & Bogdan, 1998). I interviewed support personnel, conducted direct observations, and collected extensive 47 documentary and archival data. The overall research methodology then, may be described as a qualitative, exploratory, multiple case-study design. Exploratory Multiple Qualitative Case Study Design A qualitative research design was most appropriate for this project, since it was key participants' meanings of gay and developmental disability in the everyday that were of interest (Cresswell, 1998; Denzin & Lincoln, 1994; Merriam, 1998; Smith, 1999, 1990, 1987; Taylor & Bogdan, 1998). As the literature review made clear, there is a dearth of research in these areas (Thompson, 1998; Thompson, Bryson, & deCastell, 2001). My prospect here is to begin to map some of the theoretical and practical terrain of such enigmatic identity work. So, the overall thrust of this project is exploratory. In order to begin to characterize a spectrum of relevant identity practices, I used as many key participants as I could find. This is especially important in an exploratory study. Hence, I used multiple (Yin, 1994) or collective (Stake, 1995) case-studies. The objective was not to sample a myriad of cases with the intent to generalize (as in quantitative research). A multiple case-study methodology improves the overall robustness of a study (Yin, 1994). A case study is a bounded event or system (Cresswell, 1998; Stake, 1995); therefore, its analytic unit needs to be clearly defined (Yin, 1994, p.27). These cases are distinctly circumscribed by the focus of this project, self-identified G B males with developmental disabilities. I further determined each case study on ethical grounds. Since the topic of sexuality is extremely sensitive for many persons with developmental disabilities, and since I am (typically) gender-identified as male, I resolved to limit participation by male gender. Plenty of research indicates that sexuality and sexual identification is significantly different for women with disabilities than for men with disabilities (Lloyd, 1992; Morris, 1991, 1992, 1995; Wendell, 1997). Cases were also limited through se/f-identification; key participants needed to characterize themselves as G B . Many participants were victims of gay-taunts, but only if the men named themselves as GB were they included. The issue here is the investigation of the possibilities of such "self-identification" within disabling and hetero-normative regimes. There are, of course, men with developmental disabilities who have sex with other men who do not identify as GB (see Thompson, D. 1994; Thompson, S.A. 1998; Thompson et. al., 2001). Such individuals are dealing with identity issues beyond the scope of this research, notwithstanding that no such person came forth to participate. There were other ethical concerns that precluded (some potential) key participants' inclusion in this project. Participation may have subjected members of this group to harm. They may have run the risk of being labelled G B as a result of research participation and thus may have been exposed to gay-basing and other violence. Finally, key participants must have been living independently or semi-independently. Community-living participants have greater autonomy than their institutionalized counterparts, and therefore a more credible history of decision-making. This history would be useful in combating acquiescence to me, the able-bodied researcher (Jenkinson 1993, Stalker 1998; Swain, He-man, & Gillman 1998; Thompson, in press-b). There is one notable exception. I interviewed a caregiver of Lester, a man institutionalized for 50 years-a man with a profound mental handicap who was labelled "gay" by staff. The caregiver, a colleague, thought the tale compelling for this project, and I agree. Lester died in 1997, before data collection began, but his life story is significant here because it exemplifies codes of sexual regulation within an institution, and "client" resistance. In addition, Lester's story points out that resistance and identification are not exclusively verbal acts, that it is possible to be labelled with a profound handicap and be quite capable to confront disabling and hetero-normative regimes. These issues have substantial import for this project. Generalizability, Reliability, and Validity In qualitative research projects, alternative understandings or "measures" of research quality—namely, generalizability, reliability and validity—are required. Even among qualitative researchers there are striking differences in interpreting these standards, depending upon one's theoretical orientation (compare Yin, 1994 and Lather, 1991, for example). Overall, the intention here is to provide as transparent an account as possible of the method, including the researcher's standpoint. In that spirit, the succeeding section delineates how the theoretical and practical implications of generalizability, reliability and validity were addressed. Generalizability The first task here is to present a holistic understanding of the cases themselves—a multiple case study is the relentless pursuit of the particular, not of the general (Stake, 1995). From this position, several kinds of generalizations are possible. First, case descriptions must be thorough enough to provide the reader with vicarious experiences while balancing respect for participants' stories—withstanding the pull to exoticize. From a post-modern perspective, both reader and researcher fashion acts of generalization, although researcher onus is the a greater liability, so as to provide enough of the particular for the reader to generalize (Kvale, 1996). Naturalistic generalization occurs through direct and indirect experience, through knowledge elucidated through the detailed case study (Kvale, 1996; Stake, 1995; Stake & Trumbull, 1982). Naturalistic generalization, then refers to inferences "embedd[ed] in the experience of the reader" (p. 86). In this way, naturalistic generalization may be referred to as reader generalization. My intent and hope is that these stories feature the key participants' identificatory courage and potency to intrigue, and perhaps even mobilize, the reader. Generalizing a case study to or from a theory is referred to as analytical (or interpretative) generalization (Cresswell, 1998; Marshall & Rossman, 1995; Merriam, 1998; Yin, 1994), and is the task of the researcher. Smith (1987, 1990, 1999) may conceptualise analytic generalization as the everyday identity impact or residue of relations of ruling for the key participants. I hope to show in this analysis a broader theoretical understanding of the implications of living with the label "developmental disability," since a queer analysis focuses upon the performative aspects of identity. Certain acts of identification are reflective of abuse histories that these men suffered— and as key participants continued to use such strategies, they continued to place themselves in jeopardy. Many of the abuses were at the hands of the so-called able-bodied. Exposing the limitations of (well-intentioned) able-bodied re/habilitative or educational regimes offers professionals/paraprofessionals opportunity to alter their practice. I argue that disability amelioration based on more complex theories and understandings may better serve the needs of people with developmental disabilities. To use the language of institutional ethnography, this project offers the hope of interrupting disabling relations of ruling, or institutional practices, because at the heart of the analyses here is the recognition and accountability of able-bodied implication within them. Stake (1995) refers to such theoretical amendments as "grand generalizations," discerned through counter-examples elucidated through the case study research. Such examples will be provided in Chapter Seven. Reliability Reliability and validity were substantive issues throughout the course of this project (Kvale, 1998). Almost unanimously, qualitative researchers suggest that reliability and validity need to be observed throughout the life of a project—from conception to completion (see Cresswell, 1998, and Kvale, 1996). Reliability, defined as the ability to replicate findings, has been described as problematic, since the notion relies upon a single truth. As a result, some researchers have suggested that measures of reliability make little sense from a qualitative research standpoint: Because what is being studied in education is assumed to be in flux, multifaceted and highly contextual, because information gathered is a function of who gives it, and how skilled the researcher is at getting it, and because the emergent design of a qualitative case study precludes aprior controls, achieving reliability in the traditional sense is not only fanciful, but impossible (Merriam, 1998, p. 171). Rather, it has been argued that reliability in a qualitative context may be described as researchers' attempts to ensure that the results are as dependable as possible (Lincoln & Guba, 1985; Yin, 1994). Such dependability begins, according to Yin (1994), with a solid plan, a case-study protocol, which includes a project overview, specific field procedures, case study (or issue) questions, and a field report outline. I addressed each of these in the dissertation proposal. Further, Yin (1994) suggests maintaining "a chain of evidence" (p.98) or an audit trail (Merriam, 1998), which documents the life of a project. So, I maintain original field notes, interview tapes, documentary and archival data, and the analysis journal. My intent is to present all the data in such a way as to effectively support the analysis. The Deliberate Researcher—A Measure of Reliability. An aspect of the audit trail often over-looked is the researcher himself, and more specifically, his ability to manage complex researcher-participant relations. Tom (1997) argues that the research relationship is deliberate; the researcher initiates the relationship either directly or indirectly. Sustaining such "deliberateness" throughout the course of a project is a measure of reliability. I came to realise that conducting in-depth interviews with people with developmental disabilities was easier said than done. As a novice researcher, I had to juggle many tasks at once: thoughtfully listening to participants, asking questions in respectful but significant ways, operating the tape recorder, etc. In addition, the stories themselves were very powerful and very moving. I noticed that I used some leading questions, quite "undeliberately," with the first key participant. It was only upon transcribing our interview that I became aware of that fact: Scott: How did you come out? Like, like did you come out gradually or, or did you come out all at once? Kenneth: I was taking it step by step. Actually this ah, take my time actually ah, went out a couple of gay pubs, you know that's how I met friends. When purposefully employed, leading questions can be useful, at certain times, within a qualitative in-depth interview: The qualitative research interview is particularly well suited for employing leading questions to check repeatedly the reliability of the interviewees' answers, as well as to verify the interviewer's interpretations. Thus, contrary to popular opinion, leading questions do not always reduce the reliability of interviews, but may enhance it; rather than being used too much, deliberately leading questions are today probably applied too little in qualitative research interviews (Kvale, 1998, p. 158). I transcribed personally each tape before the succeeding interview, hence it was possible to reflect upon my performance as an interviewer. Was I aware—to the extent that is possible—of how I was conducting interviews? Was I reflective? Was I deliberate? Cresswell (1998, p. 196) refers to this as "critical-subjectivity." This continual reflective practice as a researcher improved the reliability of the study. Validity Following Kvale (1996), validity is described as the ability to make defensible knowledge claims by accounting for sources of invalidity. Validity is a continual cycle of researcher action: checking, questioning, and theorizing. In this way, validity may be thought of as quality craftsmanship. Cross-checks were conducted of narrative "facts" of the identity management strategies, in addition to completing member checks. Cross-Checks of the "Facts" within the Interviews. Within each interview, in order to test the internal consistency of the stories, I cross-checked relevant facts with each key participant; however, determining "accuracy" is to be understood within the larger framework of this project. Almost invariably, researchers of persons with developmental disabilities have had to find ways of dealing with stories that are at times incomplete, bizarre, farfetched, and/or implausible (Angrosino, 1992, 1997; Biklen & Moseley, 1988; Booth & Booth, 1996; Stalker 1998; Swain, He-man, & Gillman 1998). It is possible that factual inconsistency or distortion could be accounted for by key participants' neurological differences—their "disability." For example, Cai who is diagnosed with Asperger's syndrome, regaled me with the following tale: In fact when I had my wallet stolen that's how they finally got; I had all these problems is 'cause my ID was passed all around the world and so, 'cause that's what happens to people. They had one of the, the person who stole my wallet was involved with a prison guard, who wanted to get me in prison so they could beat me up. And he framed me for a whole bunch of things, but he had his circle of friends and circle of criminals ah...take my ID when they stole my wallet, and pass it in any way you could have possibly have. And it just so happened that I had Arab money in there, I also had, a lot of names and numbers in my wallet from the PLO (Palestine Liberation Organization). And so, it's these forces all coming together. And now I'm under the witness protection program and I'm, it's really a (pause). I mean I'm very resentful of this country in fact I was offered, offered like when I was doing art, I was offered to submit a piece, well I don't know what it was, something in Canada, in Ottawa. 'Cause they wanted to do it for Governor General of Canada. And they said they were also going to give me an award if it was submitted. I just told them to go fuck themselves. I said until I get an official apology I will never accept an award. I wouldn't even go to the ceremony. And they actually got the RCMP to order me, 'cause when you're when they do that, like if you're on the Order of Service of Canada they, they order you to do that. If you don't accept the Order of Canada, you can go to jail for that. So it's a command by the Queen. And I just said, "Throw me in jail then! Do whatever you want." But I said I don't have to accept some award and smile really happy and get a pat on the head by the Governor General and say, "Yeah, I'm a proud Canadian." Because I think this country has a lot to apologize to me for. It does seem unlikely that these events "actually" happened exactly as recounted, although parts of them may have. Cal may have had his wallet stolen, for example. The point is that by looking for internal consistencies, my aim was more to gain insight into key participants' identity management practices, including how the researcher fit into such strategies, than it was to ascertain the "truth" of their stories. When participants did "entertain" me with unbelievable stories, I gently re-directed the conversation using either hypertext icons (to be explained later) or simply by bringing up another topic. More often I simply listened, no matter how unlikely their tales. To deal with "factual" inconsistencies, there were three choices: to confront participants directly, indirectly, or not at all. As just described, participants were rarely openly challenged. Because of the inherent power imbalance between myself (as an able-bodied researcher) and key participants and the sensitive nature of our conversations, directly refuting people would likely have hampered further interaction— not to mention reinscribe disabling regimes. Most often, subtler means were used. I recounted significant narrative details, both to clarify and to see if any crucial points were changed—"crucial" meaning ways in which a story is changed so as to alter its believability. For example, a key participant, Kenneth, used two different first names, but the same surname for his domestic partner, Tom Livingston and Steve Livingston (pseudonyms). Until I surmised that Kenneth was using two names for the same person, I was very confused. It is astonishing not to know the first name of your partner. Rather than confront him directly, I purposefully chose to use these names interchangeably, as Kenneth had, and was corrected. From that moment on Kenneth referred to his partner only as Steve. Of course, these inconsistencies provided significant clues into how Kenneth fashioned his identity during our interviews. Cross-Checks of the Identity Management Strategies. This manner of checking "facts" served to illuminate key participants' identity management strategies. Other points of inconsistency provided additional evidence regarding the nature of these "researched" performances. That is to say, there are potential discrepancies between participant descriptions of their status and cultural competencies within LGB communities, and how these men "acted" around me. At times, participants regarded me as a gatekeeper to gay communities, and/or almost as a gay acquaintance, and/or a care-giving professional. Certain identity practices are consonant with each perception of me, the researcher. For example, when I was perceived as a cultural insider, key participants would speak to me about gay bingo, gay bars, gay coffee houses, etc. What is interesting, and what ultimately sheds light on participant identity regulation, is how consistently (or not) these men changed their strategic performance throughout the interviews. For instance, Kenneth considered me to be a gay associate, and rarely wavered from that picture. In conducting the analyses, it became obvious that Kenneth understands that disability (for him) precludes possibilities of gay identifications. Therefore, he needed to act unfailingly as though I am a gay social contact, for to acknowledge me as a researcher interested in disability issues or indeed as a professional in the field of disability, would be to invalidate his gay performances. Other key participants engaged in more of a hodge-podge of identity scripts, and this too provided insight into their management. Member Checks. Barnes (1992) identified several problematic issues when conducting qualitative research with people with developmental disabilities; chief among this list was "researchers insisting on conclusions with which the subjects disagree" (quoted in Sample, 1998; p. 320). Sharing preliminary analyses with participants is referred to as member checking (Cresswell, 1998; Lincoln & Guba, 1985; Merriam, 56 1998; Stake, 1995). Member checks were conducted with each key participant; however, an expansive theoretical analysis was not presented. Rather, this was the time in which leading questions were purposefully employed; in some ways, member checks were simple acts of confirmation. The attempt was to make this procedure as concrete and accessible as possible. I read back the interviews to the participants, and at significant points, I would prompt the participant. I used phrases like, "This is a really important part of your life..." In this way, the salient points in key participants' stories as defined by themselves were highlighted. At the same time, participants were free to alter things they had said; however, most chose not to. When participants wished to revise the transcripts, most often it was because circumstances had changed since the initial interview. Therefore, there was a potential for inconsistency between the initial interviews and the subsequent member-checking interviews. Due to time and distance constraints, not all member checks were conducted in person. Ernie is the domestic partner (and in some ways a benefactor) to the key participant, Evan. Evan and Ernie were extremely busy and requested their transcripts via email, to which I complied. About half of the supporting professionals' member checks were conducted in person, the remaining via email. Evan and Kevin were the only key participants to be member checked via email. To sum up then, inconsistencies were located within (and among) three planes: participants' "factual" stories, participants' identity management, and member checks. Of course, these inconsistencies were from the researcher's point of view. From the standpoint of the criterion of validity, checking for inconsistencies represents one aspect of thorough social science research practice. At the same time, the inconsistencies were exactly the kind of data that were sought. The inconsistencies between and among the afore-mentioned planes served as the basis for the analysis. Looking for Negative Evidence. To reiterate, checking is an integral part of theorizing, and a critical measure of validity. Once the data are analyzed and thematically arranged, many qualitative researchers advocate a (re)sifting through data to look for incidents that could possibly refute the thematic interpretation (Kvale, 1996). In some senses, looking for negative evidence is a modernist notion. In a postmodern, more specifically, queer analytic framework, all interpretations are valid; seemingly conflicting viewpoints and/or interpretations are welcomed. Divergence is understood as ultimately more reflective of "the real world." Queer evidence has more to do with the opening of spaces to allow in different views and to expose practices that produce specific identifications. Having said that, in the beginning of the analysis, I did notice a trend; namely, the greater the amount of contact key participants had with the helping professions, the greater their experience of disability stigma. In fact, six out of seven key participants fit this profile; only Eric appeared not to conceive of his disability as a stigma in disability-related contexts. This situation demanded further investigation, which eventually led to some very important questions: • Is it possible for caregivers to deliver care without the (re)inscription of disabling and heterosexist regimes? • If so, how do caregivers do so? • What is the relationship between disabling conscriptions and queer identification? • Are there aspects of care-giver identification that almost ensure disabling (re) inscriptions? Crystallizing the Evidence. Each data source was used to shed light on the emerging themes and analysis. The aim here was for crystallization, a multifaceted panorama and appreciation of the richness and complexity of the lives of the key participants (Lather, 1991). The crystal, as analogy, perhaps better represents validity in a postmodern context, than the triangle (as in triangulation). A crystal appears different and permits different views, depending upon the standpoint of the observer. Further, simply moving the crystal allows a completely different picture to emerge. Validity, as a measure of data collection and analysis, is dependent upon the observer, and is therefore subject to interpretation. In addition, one can never see every view produced by a crystal simultaneously, suggesting that there is always more to know about a topic than can be easily surmised by the data or write-up. (Lather, 1991). The task of the researcher was to supply enough detail and theoretical integrity so as to elucidate the enigmatic everyday contradictions and uncertainties in the lives of the key participants. Informed Consent and Other Ethical Considerations A variety of procedures was used to obtain and maintain informed consent from the key and supporting participants (Thompson, in press-b). The first of these was the informed consent form. Other attempts included a plainly displayed icon of a "stop" sign, visible throughout the interviews on the interview guide, to be discussed later. Informed Consent and Key Participants Each key participant was self-selected, perhaps the strongest evidence of participant autonomy in deciding whether to partake in this project. Still, there was a need to be as prudent as possible to "fully" inform participants (Thompson, in press-b), as well as the institutional mandate to provide informed consent forms. The informed consent forms were written in plain language (CACL, 1997) and displayed in large font (see Appendices A and B). These were based upon Matysiak's (1998) consent form for a similar project. Because I could not be sure of potential participants' literacy level, I constructed two informed consent forms, one considerably more concrete and visual than the other. The "concrete" form was written in two parallel columns (see Rioux & Bach, 1994). In one column, I detailed procedural descriptions, and in the other I included relevant research protocol icons, including a tape recorder, people talking, and a written paper. I did not administer an IQ test to determine which form to use; rather, upon meeting the participants, I made that decision. On every form, I placed a stop-sign icon to remind participants that they could end the interview(s) at any time. I clearly explained to key participants that current social service provisions were not in any way contingent upon research participation. Informed Consent and Supporting Participants Similarly, informed consent was obtained from supporting participants (see Appendices C and D). A few supporting professionals needed to obtain institutional permission from their agencies in order to participate, but all who were required to do so were able to get the requisite authorization. I also constructed a separate form for partners, and I did interview Ernie, the (able-bodied) partner of Evan (see Appendix E). Internal and External Confidentiality Part of the intent of ascertaining informed consent is to plainly delineate potential risks for participants. Even though key participants publicly identified as G B , coming out is an endless, limitless performance. It may have been possible for someone to recognise key participants as a result of their partaking in this research, someone who may not be sympathetic to LGB causes and identifications. Confidentiality may be classified as internal and external (Phtiaka, 1994), and each type may be uniquely threatened. Within an institution or otherwise bounded community, there may be stress to internal confidentiality. External confidentiality refers more to the ethics of representation within communities at large. Given that the community of verbally-skilled persons with developmental disabilities in any geographic region is small, there is an inherent threat to internal confidentiality. Further, the usual "assurances are almost totally useless, however, when findings are disseminated within the setting where the research has been carried out" (Phtiaka, 1994; p. 158). In order to facilitate internal confidentiality, several safeguards were employed. First, the transcripts were presented only to key and supporting participants. In other words, results were not shared with key participants' caregivers (unless they were in the study as supporting participants). Secondly, the results are presented as themes rather than as mini-narratives. Mini-biographies are continuous stories, and likely belie more detail than they appear to (see Khayatt, 1992). Externally, using pseudonyms and only general descriptions of the settings maintained confidentiality. Method of Data Col lect ion Profiling the Research Project The first job was to raise awareness for the project in general. I used both formal (planned presentations, speeches, question/answer sessions, posters, etc.) and informal (spontaneous, unplanned discussions with colleagues and work acquaintances) means to do so. Because of the sensitive nature of this topic, I chose to let the ethics of each situation dictate the means. For example, in rural areas, I chose not to place posters (see Appendix F) in community living agencies. Homophobia exists in greater and lesser degrees everywhere, but may be more likely to occur in rural areas, or areas without visible LGB communities (see Khayatt 1992, for example). Even as situational ethics dictated the mode of profiling, I used informal and formal strategies about equally to publicize the project. From the standpoint of informing relevant professionals/paraprofessionals about the project, it was a significant advantage that I had been working as both a community-based behaviour therapist and direct caregiver for people with developmental disabilities for approximately 12 years. In those capacities, I had come to know numerous personnel in diverse organizations. I approached approximately 50 people, including home support and life skills workers, respite/group-home/proprietary 61 caregivers, residential/community/vocational managers and supervisors, special education assistants, teachers, executive directors, behaviour therapists/consultants, vocational rehabilitation consultants, counsellors, social workers, advocates and sexual health educators. Several professionals travelled throughout the province. Some people were living in other parts of Canada and the United States, so I contacted them via phone and/or e-mail. I supplied these professionals and paraprofessionals with the requisite pamphlets (Appendix F) to distribute as they saw fit. Finally, during the data collection phase of the project, I co-presented at a local conference on the topic of sexuality, homosexuality, and people with developmental disabilities (Thompson, Horgos, & Tisshaw, 2000). At that time, I made a quick plug for my dissertation research and made available pamphlets to interested persons. Of course, all posters and pamphlets were written in plain language (CACL, 1997). In addition to networking via my professional contacts to generate awareness, I canvassed the local LGB communities, specifically spaces within the LGB communities that would be supportive of people with developmental disabilities. I attended services and talked to the leaders of local LGB churches or church groups, including Christ Alive Metropolitan Community Church, Rainbow Church, Renaissance Church, AFFIRM (United Church of Canada LGB group), INTEGRITY (Anglican Church of Canada LGB group), DIGNITY (Catholic), UNISON (Unitarian), Gay Quakers, and Friends of the Western Buddhist Order. Many of these contacts were made possible since I was an active member of the local Gay and Lesbian Interfaith Exchange. Further, I spoke to members of several local LGB musical groups. I shared a booth with the LGB Centre on Pride Day Celebrations, at which I displayed posters, distributed pamphlets, and talked to interested people. As well, on Pride Day, I briefly interviewed people staffing other 62 booths, including E G A L E (Equality for Gays and Lesbians Everywhere), Street Nurses, local AIDS organizations, etc. I supplied all those interested with the specific aims and methodological details of the study via a web-page. (I was surprised at how helpful it was to have the web-page, since many people I spoke with were pressed for time.) At the same time, I found it challenging to provide succinct explanations of such a complex and exploratory project. Having the web-page allowed people the option of reading my dissertation proposal at their own pace. Several people commented on how the web-page clarified questions that they had in regards to the project. In summary, although there is no easy way to determine the effectiveness of my efforts to bring about general awareness, I believe I spoke to enough people, and strategically placed enough pamphlets and posters to effectively "spread the word" throughout the entire province, as well as down the Western United States. To continue to profile the project, and to obtain a greater understanding of the indigenous background factors, I interviewed three very experienced supporting participants. The first was Alisa, the library technician/resource coordinator at the Sunny Hill Sexual Resource Network; the second, was Shelley, the director of the Wellness and Disability program at B C - C P D ; and the third was Jenn, the Coordinator for Youth Services at the local LGB Centre. Over the years, the library technician and LGB youth coordinator had provided me with many useful resources—sex education curricula, books, articles, magazines, videos—and we had many substantial conversations about the need for a project such as this. So it would be misrepresentative to suggest that the "official" research interviews were the only times in which I solicited their insights into the field of sexuality and developmental disability. We have been speaking informally about this project for at least 4 years. 63 Chain or Snowball Sampling Strategies Creswell (1996) argues that an essential part of a case-study protocol is to delineate a purposeful sampling strategy. I used chain or snowball sampling techniques to obtain key participants, in which cases are identified through word of mouth within social networks (Cresswell, 1998; Miles & Huberman, 1994; Taylor & Bogdan, 1998). Through the web-page, posters, numerous formal and informal professional/paraprofessional contacts, and interviews with community resource personnel, seven self-identified G B men with developmental disabilities were singled out as potential participants for the study. Although I used snowball sampling (Cresswell, 1998; Miles & Huberman, 1994; Taylor & Bogdan, 1998) to locate these men, all key participants initiated contact with me in accordance with ethical guidelines. When participants contacted me, the purpose of the study was clearly articulated, and so began my efforts to ascertain and maintain their informed consent. Most key participants heard about the study through a trusted caregiver. One participant, Cai, learned of the research via the advertisement posted at the LGB Centre, and Thomas; another participant, heard about it from someone who had previously been interviewed, namely, Eric. To further elucidate the possibilities of gay performance within disabling regimes, I asked each participant to name either a family member, teacher, or caregiver that helped them "come out." All participants referred me to a caregiver. I interviewed several supporting caregivers. Three support group facilitators were among these professionals. One facilitator, Judy, led a sex education group exclusive to (ostensibly "straight") people with developmental disabilities. Mitch succoured GB (and questioning) males with developmental disabilities through A Safe Place, a group created for such men; and as already stated, I interviewed Jenn, the coordinator of a LGB youth group, which occasionally included youth with developmental disabilities. Jenn and Mitch were 64 "out" to me about their sexuality; Judy did not disclose her sexual orientation. Such diverse environments permitted a view into how homo/sexualities are constructed in spaces for LGB people with disabilities vs. "non-LGB" spaces for people with disabilities. Concurrently, such sampling made possible a view to the construction of developmental disability in (able-bodied) LGB spaces. Speci f ic Data Col lect ion Techniques Semi-Structured Interviews The bulk of the data was collected using one-on-one, qualitative semi-structured interviews (Kvale, 1996). "The purpose of the qualitative research interview...is to obtain descriptions of the lived world of the interviewees with respect to interpretations of the meaning of the described phenomena" (Kvale, 1996, p.30). What does gay identification mean to key participants? What does supporting such identifications mean to professionals and paraprofessionals? Although the reader has not yet been introduced to the participants, for the purposes of methodological transparency, Table 1 is offered as a description of the lengths and number of interviews conducted with each participant5. All key participants were interviewed individually, however, Evan who was interviewed with his partner Ernie present. Also, key participant Eric was interviewed by himself, but was present when I interviewed his caregiver, Judy. Table 1. Number and Length of Interviews with Key and Supporting Participants 65 Key Participants (Pseudonyms) Number of Research Interviews Approximate Length of Interview (in hours) Method of Member Checking Kenneth 1 2 read back transcription in person; interview Lawrence 2 1 (first); 1.5 (second) read back transcription in person; interview Thomas 1 1.75 read back transcription in person; interview Cal 2 1.5 each read back transcription in person; interview Kevin 1 1.5 sent email of transcript to caregiver (Mitch) who read it back to him Eric 3 2 (first); 1.5 (second); 1.25 (third) read back transcription in person; interview Evan 1 2.75 sent email of transcript to partner (Ernie) who read it back to him Supporting Participants Alisa 1 formal, many others informal 1.75 sent email of transcript; invited comments Jenn 1 formal, many others informal 2.25 sent email of transcript; invited comments Shelley 1 1.25 sent email of transcript; invited comments Will 1 formal, several others informal 2.25 read back transcription in person; interview Mitch 2 1.75; 1.5 sent email of transcript; invited comments Judy 2 1.75 (first); 0.75 (second one was over the phone) sent email of transcript; invited comments Kvale outlines several features of interviews that are pertinent to this project. Firstly, topics, activities, and events occurring in participants' life world are the focus. Researchers are interested in the language, customs, and culture of the everyday, and so generally attempt to converse with participants in familiar, "non-scientific" ways. The aim here was to elicit broad participant descriptions of situations, adventures, and circumstances. Smith (1987, 1990, 1999) repeatedly stressed that research must begin in the everyday in order to understand how "ruling relations" impact the lived worlds of participants. That is to say, that the disabling, homophobic, and heterosexist practices— practices through which always and already these participants identify—are to be found on the ground. Typically, the qualitative semi-structured interview is focused thematically. Here, questions were framed around several issues, which will be shortly revealed. The fluid process of interviewing allows for (indeed, promotes) fluctuation and change in participants' responses. This technique required sustained researcher sensitivity, as the interview situation was, as is usual, quite personal. Hypertext Interview Guides. In this project, there were ethical considerations beyond the effects of institutionalization, social isolation, the pull to pass as normal, acquiescence, and a potentially compromised decision-making history for key participants. These concerns had to do with the very nature of the (semi) "structured-ness" of the interviews. First I present these points, and then ways in which they were addressed. People with developmental disabilities communicate and process information in a variety of ways—some conventional, some not so. At the risk of over-generalization, most of these folks think concretely, and benefit from the use of visual strategies, such as picture daily schedules, for example. As a researcher, I needed to respectfully accommodate these kinds of intellectual profiles. At the same time, some folks with disabilities when interviewed may have spoken at length about completely extraneous and irrelevant things. Granted, this statement is made by an able-bodied researcher; nevertheless, I required a way to gently and respectfully re-direct participants back to the general topic, if the conversations were simply too superfluous. Thirdly, I wanted some way to attempt to continuously verify the participants' informed consent throughout the interviews. Finally, since these were research interviews and not therapeutic interviews (i.e., not psychotherapy), and bearing in mind the qualitative research protocol, the interview locales were selected to accommodate those concerns; that is the environments "spoke" more as "research-like" than "therapeutic-like." For all of these reasons, I chose to create hypertext interview guides (see Appendix G). I presented the guides to participants on a portable laptop computer at the beginning of the interview sessions. Additionally, I printed out hard copies of each guide for each participant to access, if he so chose. At the time of submitting my informed consent forms to the UBC ethical review process, I thought that co-creating collages with participants would be an effective way to informally structure the interviews; however, the hypertext proved to be more portable and manageable as an informal structural tool. The interview guide consisted of the following headings: Names for Yourself, Coming Out, Family, Gay Community, People with Disabilities, School, The System, Top 3 'Helps' to Coming Out and Top 3 Barriers to Coming Out. Case study or issue questions were presented below each heading (Marshall & Rossman, 1995; Stake, 1995; Yin, 1994). Fonts were large, multicoloured and approximated the rainbow (LGB) flag. Graphic icons representing the headings were included. Repeated between sections were two large stop sign icons framing the phrase: "Remember that you can stop this conversation at any time! Just tell me to stop!" In this way, participants were continually reminded visually that they could terminate the interview whenever they wished. Such were my well-made plans. In practice, although I carefully demonstrated how to navigate the hypertext interview guide, some participants were intimidated by the very presence of a computer. So, I did not use it during every interview; however, the hypertext was very useful at the beginning of each session, since the icons graphically laid out the main themes that I wished to explore. Since participants were prepared for the general flow of our conversation, the laptop often helped them calm down, especially key participant Kevin. In addition, the computer provided a focus for the first part of the sessions, so it facilitated the (sometimes) awkward first moments of conversation. I constructed a similar hypertext interview guide for the supporting participants (see Appendix H). Setting Negotiation(s). Participants can (mis)perceive the researcher/researched relationship in many ways—as a friendship, for example (Thompson, in press-b). Careful selection of the interview locale can help mitigate such misunderstandings. Talking about sexuality and sexual identification had the potential to further hamper the associative status. From the literature review, it was evident that many people with developmental disabilities would interpret conversations about sexual identity as conversations about sex—so a space that afforded privacy for emotional safety was important (see, especially, Ringheim, 1995). At the same time, the interview space was not to be "too private" such that key participants may possibly misinterpret the intent of the research interview. To accommodate both demands, settings were negotiated that were simultaneously private and public. For example, I interviewed several participants at a local office of an agency that specializes in supporting people with developmental disabilities. Although the interviews occurred in a private inner office, this space over-looked the general office via a glass partition. In this manner, similar kinds of settings were secured for each participant. The mutual negotiation of the interview locale was in itself indicative of the kinds of identities that the participants expressed. Kenneth, for example, did not want to be interviewed at my office, a well-known agency supporting people with disabilities. We met on the steps of the public library. Kenneth, as we shall see in much greater detail, did not identify at all as disabled. Direct Observations Direct observation data were collected of some of the settings in which the key participants lived, and of some of the governmental offices in which they visited. 6 Because I am a professional behaviour therapist for persons with developmental disabilities, there was no need to extensively visit these settings; I am intimately familiar with such placements in the local context. For a number of reasons, "observation is a fundamental and critical method in all qualitative inquiry" (Marshall & Rossman, 1995, p. 80). Firstly, observation allows the researcher to note activities, objects, and signifiers, which likely have become part of the performance of sexuality and disability. Observation, then, can convey information that the participant is unable or unwilling to talk about. For example, Booth and Booth (1996) conducted observations of participants with developmental disabilities and effectively analyzed the data based not upon verbal responses, but upon observed silences. Finally, observation can provide a form of data verification of semi-structured interviews (Marshall & Rossman, 1995; Merriam, 1998). Throughout this project, I observed in several locations: a home-based respite service, various government and community-living offices (including, most commonly, social worker offices), as well as at the LGB Centre. Observations most often took place before, during and after the interviews with self-identified G B men with developmental disabilities and during interviews with supporting professionals/paraprofessionals. 70 Documentary Collection and Analysis To supplement the semi-structured interviews and direct observations, I collected and analyzed extensive documentary data culled from various community and educational resources. In documents written by authors/organizations mandated to serve persons with disabilities, I looked at how homosexuality was constructed throughout the texts, if mentioned at all. As stated, see Thompson (in press-a) for a thorough investigation of narrative policy analysis and LGB people with developmental disabilities. Similarly, I examined the printed artifacts produced by authors/organizations mandated to serve the needs of LGB persons, and I investigated the ways in which disability was constructed (if at all). The last set of data that I used in this study, although very peripherally, was an archival collection and analysis. I consulted publications from the British Columbia Human Rights Commission, the Canadian Association for Community Living and the BC Association for Community Living. By examining statistical information about persons with developmental disabilities in Canada, I was able to ground this study in some of the overall trends pointed out by these statistical measures. Basically, and sadly but not surprisingly, people with developmental disabilities in Canada often live below the poverty line, a fact that organized many of the conversations that I had with key participants. Such poverty contributed to the vulnerability of these key participants, and I will explore vulnerability in much greater detail in subsequent chapters. Data Management and Recording Transcription Reliability and Validity. All interviews were tape-recorded and transcribed by the researcher. Given the sensitive nature of the conversations, it seemed ethically imperative to transcribe all data myself. To facilitate reliability of the I obviously observed the participants as well during the interviews. transcriptions (Kvale, 1996), I first transcribed the tapes; then, I read the transcriptions while I listened to the original tapes. In this way, I was able to improve the accuracy of the printed data. All transcriptions occurred using the ViaVoice (1998) computer program; I listened to a section of tape, reiterated that dialogue into the microphone, and the program "transcribed" the words (i.e., converted speech to text). In addition, this program can cue the computer to "speak" the words that I transcribed (i.e., text to speech). This feature allowed me to get an overall sense of the transcriptions, since words indicating para-verbal and nonverbal behaviours were "spoken" by the computer. Kvale notes that transcription, like interviewing, is not an objective process. The transference of oral to written discourse is, in itself, an act of interpretation (see also, Mishler, 1991). The question does not concern the inherent validity of the transcription, but rather the degree to which the particular transcription fits with the research questions and overall methodological design. For the current project, I attempted to capture as much of the paralinguistic associated behaviours in the transcriptions as possible—the long and short pauses, the "hmm's," and oft-repeated words and idioms. My intent was to capture, as much as possible, the emotional tone of the interviews of the speech acts (Bernard, 1994). General Data Management. All tapes, transcripts and informed-consent forms were securely stored at the researcher's home. No one had access to any of the materials. Data Ana lyses Data analyses were carried out throughout the course of the project. A journal was kept to facilitate the analyses and proved invaluable for several reasons. First, any rudimentary analyses, thoughts, and concepts were recorded in the journal without censure to be evaluated later. Second, the journal functioned as a chronological record, as all contacts with participants and potential participants were noted and dated. Finally, the journal served as an outlet for bridging the gap from my ongoing reading of 72 disability theory, queer theory, qualitative methods, etc. and my actual observations and conversations with participants. Coding and Categories First, all the key participant transcripts, and then those of the supporting participants, were read through to get a sense of the whole. Then, the preliminary analysis began. The transcripts of the key participants were coded as follows: • demographics • history (with respect to the social service system) • family (relationships, including family history) • relationships (participants feelings, thoughts and history of non-familial relationships, including partners, friends, co-workers, etc.) • caregivers (comments, feelings, and thoughts about relevant caregivers) • sexual abuse (conversations having to do with sexual abuse) • sex (conversations having to do with the act of sex) • financial/work (having to do with how the participant supported himself financially, talks about jobs, training programs, disability pensions, etc.) • leisure time/interests (what participants did for a hobby, for entertainment) • other communities (any other ethnic, religious or disability communities in which participants partake or wished to partake) • coming out (discussions about how the participants came out, who they came out to, etc.) • gay is... (any thoughts or reflections on what it means to be gay, or what homosexuality is) • gay community (how participants accessed or attempted to access gay communities; their thoughts on gay communities) • disability is...(any thoughts or reflections on what it means to be labelled, what a disability is to them, etc.) • reflections on his own disability (participants' reflections, comments and understandings of his own disability or life circumstance) • gay people with disabilities (participants' reflections, comments and understandings of gay people with disabilities) • ethics (any ethical dilemmas that came up during our conversations) • how I was perceived...(the researcher's perception of how he was perceived by participants) These codes were created via a top/down, bottom/up dialogic approach to analyzing the data. Some of the codes were summations of responses of the key participants, e.g.: conversations about sex or sexual abuse. Other codes represented more interpretative acts on the part of the researcher, e.g.: how was I perceived by the key participant (as a gay man, as a researcher, as a professional therapist in the field of developmental disability, etc). These interpretations were influenced by the Goffman's, Lave & Wenger's, and queer performance theory. So, there was a cyclical and continual loop between data, theory, and participants and theorist/researcher. A large matrix was constructed with each of these coded categories representing a separate column. To complete the actual coding, I accessed the transcripts on the computer; I selected particular details for each key participant. These details included notable quotes, (abbreviated) significant story synopses, as well as page references to transcripts. I copied and pasted these details from the transcripts into the matrices. In this way, it was possible to look at all the participants' responses at the same time, thus facilitating the analyses. In addition, a separate row was added under each participant, in which I recorded my own observations or significant impressions about the participants. A similar procedure occurred for the preliminary analyses of the supporting participants, including the construction of a matrix. The transcripts of each supporting participant were coded as follows: • job title and responsibilities • educational background • rate of contact with people with developmental disabilities • other staff or volunteers in the program or service program or service description • the program/service fit for people with developmental disabilities • the program/service fit for people with other disabilities • specific examples etc., of gay people with developmental disabilities in the program/service • how G B people with disabilities accessed the program/service • reflections on how the program/service could be improved • thoughts on the question: "How do people with developmental disabilities become gay?" • background issues • miscellaneous 74 The matrices representing the responses of the key participants and those of the supporting participants were placed side by side; this facilitated the data analysis between the caregivers and the care-for. Specific Analytic Processes Together, the key participants' response matrix and my theoretical lenses, provided a framework from which I discerned five kinds of strategies these men used to negotiate their identities (see Chapter Four). These identity-strategy rubrics are richly descriptive, and a significant part of these case-study descriptions is the role that able-bodied persons play in supporting the people with developmental disabilities in the community, as has been most famously documented by Edgerton (1993,1967). What is unique within the present sample is the roles that able-bodied professionals and paraprofessionals in particular seemed to play in these men's lives (see Chapter Five). As engaging as reading the transcripts was, I was constantly struck by the vulnerability within these men's words; this phenomena served as the beginning of the secondary analysis, which lead to the arrangement of the complementary themes, namely vulnerability and control. I marvelled at how often identity management strategies served to exacerbate these risky conditions. I noted on the transcripts any example of vulnerability from extreme and blatant exploitation to more "acceptable" and less discernable forms of discrimination. I then reflected, via my dissertation analytic journal, upon the implications and contexts in which key participants used these strategies. Through case-study categorical aggregation, "a collection of instances from the data [such that] ...issue-relevant meanings emerge" (Cresswell, 1998, p. 154), I determined that heterosexist and able-bodied cultural expectations, norms, environments, and even professional practices all conspire to place people with disabilities at considerable risk. By the same token, it became clear that key participants 75 variously fought these able-bodied and heterosexist notions. Consequently, the corresponding theme, asserting choice, power and control, emerged—again through case-study categorical aggregation. Finally, because professionals/paraprofessionals played such a principal part in these key participants' lives, not surprisingly, caregivers too were vulnerable, and also challenged regulatory regimes to support the choice, power, and control of people with developmental disabilities (see Chapters Six and Seven.) Again, these corresponding caregiver themes emerged through extended categorical aggregation. As previously mentioned, certain researcher questions arose during the data collection—questions concerning the practice of special education, the (re)inscription of disability prejudices, and caregiver cultural identification and its impact upon work. These questions were answered by framing the paradigmatic parameters of queer identification(s) and disabling identification(s), and so represent a queer analysis (see Chapter Eight). Reciproci ty Qualitative researchers have remarked upon the challenges in "giving back" to participants with developmental disabilities. It was not appropriate that I become these participants' friend (nor is it, I believe, really possible). Therefore, I addressed this issue in the following ways. Ward and Flynn (1994) make recommendations for "improving relations between disability researchers and those they research" (p. 34). In particular, Ward and Flynn recommend "sharing research findings with other people with disabilities" (p. 41) and "influencing policy makers and practitioners" (p. 43). I shared the results with the participants during the member checking interviews. Also, both groups of participants made recommendations to influence future educational curricula design and implementation. 76 CHAPTER FOUR Lester's Story: A Foreword (as recounted by Felicia his caregiver) The comments in the reports were negative. There were negative connotations to them. 'We had to pull him out of Pierre's bed,' that kind of thing. Instead of saying, 'Well I wonder, if maybe he is seeking a relationship, maybe we should foster this.' It was nothing like that. It was purely behavioural. Mind you, the institution hadn't fostered any kind of relationship, whether it was heterosexual or homosexual. -Felicia I met Lester a few years before he unfortunately passed on, although I had no idea at the time that he would be posthumously participating in this study. Felicia, a colleague, provided weekend respite care for him, and I attended some social functions at her home. Lester lived most of his life, from the ages of 5 to 55 to be precise, in a large institution for people with developmental disabilities. Because Felicia was also close to his institutional aides, she can detail different parts of his life. When I met Lester, he had been de-institutionalized for a mere 2 years. His life story is significant here because through it, insight can be gleamed into how homosexuality is constructed in institutional and post-institutional settings. Lester "was labelled profoundly mentally handicapped. He was a short guy, who was always smiling. He attracted people wherever he went. He had very kind eyes," Felicia fondly reminisces. He was diagnosed with Down syndrome and a variety of concomitant conditions. Almost completely nonverbal, Lester communicated through a series of idiosyncratic gestures, eye gaze, body positioning, and pointing. Evidently, there was a lack of structured and sustained communication strategies implemented within the institution. Felicia set up a picture communication system for Lester, and "it was the first time that we really saw him show formal interaction attempts. He would take the book and open it to a specific page and then pass it to somebody. And you know, and on a couple of occasions he pointed to a particular picture, you know a full-hand point." Lester suffered other institutional effects. He hoarded food, and ate very quickly, almost nervously. Lester hated to be around water, especially swimming pools, because "we found out that he was made to go into the water, because if everyone else in that institution went swimming, then he had to swim, even though he was very fearful, and not the least bit interested in swimming." For those 50 years, Lester shared a room with four or five other males, "each had a bed, a night stand, and a locker for their clothes." They had to share a common washroom with "10 or 12 shower stalls, and toilets, things like that." Plainly, privacy was (classically) compromised. Lester's parents had passed away earlier in his life, and his two brothers rarely visited. Lester 's room-mates necessarily became his family, one of whom was a man named Pierre. Lester and Pierre were very close; naturally, they spent many years living with one another. The two would watch TV together, eat together, attend outings together, etc. Even on outings with larger groups, it seemed that Pierre and Lester ended up side by side. Lester "would often put his arms around Pierre," "put his head on [Pierre's] shoulder," and "he would crawl into bed with Pierre." The two slept together for many years. Because of this and possibly because Lester was "very effeminate, the way he carried himself," institutional staff bestowed the label 'gay' (although not the identification) upon Lester. "I know of a number of reports that came out of [the institution] that label him as gay." The label was "attributed to him in a negative way." Staff never explicitly attempted to eradicate "the homosexuality," although they "did try in subtle ways to stop it...they rearranged the room so that his bed was not near Pierre's bed," etc. At the same time, the professionals within the institution never addressed sexuality issues. At the Personal Service Plan (PSP) meetings, hand-over-hand use of a glue gun, and opening canned macaroni were surely more pressing and measurable goals than murky relationship issues. Since Pierre and Lester's connection was not validated, the two were separated when integrated into the community. Subsequently, they each became depressed. Luckily, a former institutional aide decided to care for both in her home so that the men might once again co-habitate. In their new garden suite abode, Pierre and Lester simultaneously enjoyed more and less privacy. They had separate bedrooms; they did not toilet, bathe, or shower at the same time, "so that changed their relationship." Although the intent of community living is to allow for more freedom, independence, and autonomy, paradoxically that may not always be the case. Because of higher caregiver to cared-for ratios, there may be in fact, fewer liberties—especially if those 'liberties' are culturally questionable. That Lester and Pierre shared a deep life-long affiliation is not at issue, and as long as the connection between the two profoundly handicapped men was constructed as platonic, they were permitted to be together. When Lester passed away "Pierre would often look out the window, and [Felicia] assumed that he was looking for Lester." The theoretical quandary between representing Lester's life as a case of institutionalized homosexuality or as an unfortunate example of thwarted (but "authentic") homosexuality, misses the point. What is at stake is the fact that sexuality and identification are ever-present in any care-giving interaction, and that those issues are substantive in that they impact (although not necessarily obviously so) the kind(s) of care that people receive, and the kinds of privileges they may enjoy. More to the point, this vignette smashes any notion that identification is autonomous and free, for underscored here is the inextricable link between "personal" identity and the helping professions for people with developmental disabilities. To some readers, Lester's story 79 may be an anomaly—an artifact of institutional life, and not particularly relevant in the—now vogue—age of community living. After all, there are no longer any institutions for persons with developmental disabilities in the local setting. To continue to emphasize the pull to pathologize these LGB folks, to make plain that institutional practices are not confined to institutions, and to ground such queer work of identification in local "community living" contexts, I interviewed professionals from the Sunny Hill Sexual Resource Network (SSRN) and The Wellness and Disability Initiative (WDI) of the BC Coalition of People with Disabilities (BCCPD). (See Table 27). Table 2. Supporting Professionals (not connected with key participants) Careg i ve r Pos i t i on /Ro le A g e n c y Respons ib i l i t i es A l i s a L ibrary Techn i c i an and (Informal) Intake W o r k e r S u n n y Hill S e x u a l R e s o u r c e Network ( S S R N ) Coord ina te mater ia ls related to sexua l a b u s e prevent ion and heal thy sexual i ty for pe rsons with disabi l i t ies for the prov ince. P r o g r a m tends to a d d r e s s the n e e d s of ado lescen t s . C o n d u c t s mos t of the intake ca l ls f rom around the prov ince. J e n n S e x u a l Heal th Educa to r Coord ina to r of the G A B You th P r o g r a m Sunnyh i l l S e x u a l R e s o u r c e Network ( S S R N ) T h e Cen t re : A P l a c e for L e s b i a n , G a y , B i s e x u a l , T rans -gende r P e o p l e and The i r A l l i es Del iver a n u m b e r of w o r k s h o p s on heal thy sexual i ty and sexua l a b u s e prevent ion for peop le with disabi l i t ies a round the prov ince. Faci l i tate youth coming-out and d i scuss ion g roups . Co-o rd ina te youth d a n c e s , h i kes , c a m p i n g trips and other funct ions. S h e l l e y Director and Librar ian Wellness & Disability P r o g r a m at B C Coal i t ion of P e o p l e with Disabi l i t ies Coord ina te resource al locat ion on heal thy sexual i ty , sexua l a b u s e prevent ion for peop le with d isabi l i t ies. P resen t at local con fe rences . C r e a t e and mainta in w e b p a g e . S o m e resea rch responsib i l i t ies. (P rog ram tends to a d d r e s s the n e e d s of adul ts) . 7 Note that Jenn has had two jobs; one as a Sexual Health Educator at the SSRN and her current position as Coordinator of Youth Institutional Practice in Non-Institutions: Sexual Regulation and Community-Living The Sunny Hill Sexual Resource Network was created by the provincial government to redress the alarmingly high rates of sexual abuse of people with disabilities (Sobsey, 1994). Along similar lines, the Wellness and Disability Initiative (WDI), an out-growth of B C C P D ' s AIDS and Disability Action Program, is mandated to provide general sexual health information as well as specific materials about HIV and AIDS prevention for people with disabilities, including people with developmental disabilities. To those ends, both S S R N and B C C P D personnel provide information, not only about sexual abuse prevention, but also on healthy sexuality and healthy sexual development across a broad spectrum of disability, including developmental, physical, and mental health disabilities and/or issues. S S R N sponsors a national toll-free telephone line for anyone with sexual abuse disclosure issues. Both Sunny Hill and WDI maintain extensive resource collections and produce social-sexual (and related) materials. Indeed, Shelley, the director of WDI, commented that "two of our publications, Let's Talk About AIDS and Let's Talk About Condoms, are written for people with developmental disabilities [and] are probably two of our most successful publications." Sunny Hill, unlike WDI, staffs two full-time sexual health educators, whose job it is to travel the province, delivering lectures on sexual abuse prevention and sexual health for people with disabilities. Professionals and paraprofessionals from all parts of the province and from many different disciplines use the S S R N and WDI services—from classroom teachers, resource teachers, special education assistants, nurses, probation officers, residential care-providers, Planned Parenthood personnel, as well as parents and people with Services at the local Centre for Lesbian, Gay, Transgendered, Bisexual Persons and Their Allies. disabilities themselves. S S R N and WDI are provincial—if not national—information nexuses concerning sexuality and disability. Alisa has been the library technician at S S R N since its inception in 1995. Certain of her responsibilities are very library-specific, but "a great deal of my time is spent in taking calls. I do 95% of the intake calls here, maybe more than that, maybe 98%, so I am the first person that most people speak to," she reported. So, staff observe an array of caregiver attitudes and practices around sexuality in general, and of LGB sexualities, of particular interest here. That being said, the intent here is not to make formal generalizations about caregivers' homophobic, heterosexist, and heteronormative perspectives as did the researchers detailed in Chapter One (Heshusius, 1987; Heyman & Huckle, 1995; Hingsburger, 1993; McCabe, 1993; McCabe & Cummins, 1996; McCabe & Schreck, 1992; Scotti et. al 1996a, b). To reiterate, the objective here is to show (indeed, demonstrate) that homophobia, heterosexism, and heteronormativity within the field of developmental disability are alive and well, right here in our own backyard. Specifically, S S R N and WDI staff described at least four ways that institutional practices border, contain, and inhibit same-sex behaviour and identification in the local setting. These tactics are lack of resources, questionable resource access, lack of policy, and compulsory heterosexuality. Lack of Resources Alisa from the S S R N receives more calls now than ever before regarding LGB issues, approximately 3-4 per month, as opposed to only a few calls per year when the program was first initiated in 1995. For LGB folks with developmental disabilities, this is a mixed blessing. Not all requests are positive, as we shall see; however, some callers do request information and community resources. Unfortunately, there is little substance to provide. Not to understate the point, Alisa deplores this "paucity of resources" for LGB people with developmental disabilities, including lack of printed material (sex education curricula, books, pamphlets), audiovisual media, outreach support groups and qualified counsellors: The men with developmental disabilities that are calling and identify as gay, have said that they're looking for support. They're looking for a group that they can meet with; they're looking formen like them. They're looking for people to support them, and they're looking to develop a community for themselves. And they're also looking for resources to help support them and help them understand why they are the way they are. And how they can be safe, how they can be sexually safe, how they can be psychologically safe. [To] have someone say to them, "This is OK" or that they can say this is normal. Unfortunately the resources that I can think of off the top of my head in the library, they're not specific to that subject but you have a couple of pages of information about identifying as homosexual and being a person with a developmental disability.... There's very little, of that, and there is real paucity of resources. We need those resources! It is not surprising, given the literature review in Chapter One, that Alisa bemoans the scarcity of resources for LGB people with developmental disabilities. At WDI, Shelley states that such resources are not even requested, nor have they ever been: Scott: Do they [caregivers] ever ask for any material or support when it comes to gay and lesbian issues? And having a developmental disability? Shelley: I have never had that question, and I have never seen any indication of that in the files that it has been a question [emphases added]. And that doesn't surprise me given that the whole issue of sexuality in general is not usually discussed. Even by, I've not even had any really in depth questions or discussions with caregivers and professionals. And that's not to say that they wouldn't feel comfortable with, just that it is not happening right now. Scott: Questions about sexuality? Shelley: About sexuality in general. One way to contain LGB performances of people with developmental disabilities is to silence any of their queer acts of identification—to inadequately chronicle these stories or document them only as acts of deviance. Alternatively, one may suggest that sexuality is not an issue. Sexuality does not "come up"—even in discussions about...well, sexuality. Jenn, a sexual health educator from S S R N , traveled the province giving lectures on sexual abuse prevention and healthy sexuality for people with 83 developmental disabilities. Like Alisa and Shelley, Jenn had the opportunity to witness the muzzling of LGB performance for people with developmental disabilities: In small groups where people are sharing stones and you get to know about more about them, you hear a little bit more. [Workshop participants] say things like "In my 20 years experience that has never been an issue" [Jenn's emphases]. Lack of Policy Nowhere are the effects of silencing LGB performances more apparent and arguably more salient in the field of developmental disability than in the area of sexuality policies. Policy not only guides current practice (ideally), but also provides clues as to how sexuality is constructed within particular institutions (Roe, 1994; Yanow, 1996, 2000). Lack of policy speaks to how an organisation regards any sexualit(ies) performances, and indeed behaviour(s). Four key participants received services from three local Community Living Agencies. Only the agency that provided outreach services to Thomas and Eric had any written policy on sexuality. The sexuality policy is located in the Client Care section of the Policies and Procedures Handbook (2000). The policy is laid out with the following sub-headings: • Sexuality policy • Respect for client's moral choices • Education and training • Support for special needs • Privacy and respect • Sexual safety • Development of friendships • Informed consent • Personal care Evidently, choices, respect, and safety are emphasised throughout the policy. For example, in the opening philosophical statement, various alternative communication devices are offered as a way of enabling inclusivity for people with disabilities. However, no where in the policy are the words lesbian, gay, or bisexual. Interestingly, three of the most frequently borrowed items by community living staff from S S R N are, in fact, sexuality policies, according to Alisa. There are myriad materials available from the Sunny Hill library, including books, videos, journals, periodicals, sex-education curricula, anatomically accurate dolls, social-skill games, personal care and hygiene exercises, etc. Given all the resources available to community living agencies, these sexuality policies obviously are a priority, although it is unclear as to why there appears to be such a lack of agency specific policy. For G B persons with developmental disabilities, the absence of (official) sexuality policy is serious. Questionable Resource Access Not only are few appropriate resources available, but access to those materials, role models and support groups very often depends upon the support network around the folks with developmental disabilities. As detailed in Chapter One, caregivers' attitudes are critical to healthy sexual development of people with disabilities. Alisa describes the local context for people with disabilities: A person with the development disability, labelled developmental^ disabled, meaning that's affecting their cognitive ability, is dependent upon their caregivers for a great deal. And one of those things is approval, and acceptance, and information. Their primary sources of information are teachers (in the school system) parents or guardians or caregivers (if they have them). And outside of that, after that, are support workers and community workers. And those are the people that teaching a person with a developmental disability that your sexual identification is wrong. And when it is a person that doesn't have a developmental disability that identifies sexually different than heterosexuality—there's been deal of documentation and the press that there has been confusion and guilt and shame. And not for all people but for some people. That's very true. And there are support groups out there and have the cognitive processing ability to search out things that make them, that help them understand where they're at, where they want to go to, and what choices they want to make that are good for them. Healthy choices. If it is a person with developmental disability, and they're depending upon that community of people that I have discussed—that may not necessarily be pro-sexual expression whatever that might be—what message are you teaching them? You're teaching them to suppress their feelings, suppress their emotions, suppress their need for intimacy, and hide. That it's, maybe not that, that it's, maybe not that it is shameful necessarily, but that is not OK—and that it's different. And they will feel from their caregiver and I have been told that in direct conversation with two men with developmental disabilities that identify; one as bisexual and one as gay. They didn't, they don't understand the subtle social cues, but they're picking up that something is different about them. And their caregiver doesn't really feel good about touching them, or even shaking hands. And they don't understand why. And when they ask that question, there could be any number of reasons. I have happened to have a little more information having the caregiver contact me first. And realise that it was due to some discomfort on the care-provider's end, around their clients' sexual orientation. And my question would have to be, that I constantly ask myself is: Do we have the right to impose that on another human being?[Alisa's emphases] Or, when services are not constructed in a way as to even be accessible to folks with disabilities, as Jenn also explains: Yeah, so and just in the community generally I mean when you look at the services that are out there and how they advertise themselves, and how they represent themselves, you just never see images for people with disabilities. And people just don't take the time to think about structuring promotional materials to be accessible to people who, who don't read very well or who have a visual impairment. You know, like I have this ongoing argument with this particular agency I work with. I mean they create amazing materials around AIDS and HIV literature. But they always use these like funky fonts that are so tiny and look sort of, like you know the try to cram a lot of information into a small space, and the use these sort of shaded pictures. And I keep getting on their case, saying that you know if you don't read well, then you can't access this information. And it is great information ....you know, [if you] are you open to working with people with disabilities, then create your resources to do so you know? So just no concessions for people with disabilities at all. Of course, to create environments in which folks with developmental disabilities are able to effectively exert choice, power and control, requires co-operation and teamwork from many people. As stated in the previous section, LGB people with developmental disabilities are made more vulnerable when their sexuality is invisible to the disability-related support system, and when other services exclude them based upon their disability. "It's just, their needs are so huge, and there are no services specifically designed for them. And the services that are created for people with disabilities are not necessarily going to create a safe space for people to come out as LGB in some way. So they just fall through the cracks, right?", stated Jenn. These "cracks" are the focus of the following section, specifically, an analysis of (an often) failing social services system, its lack of co-ordination and accountability, and further, how services exclude LGB people with developmental disabilities. The ultimate exclusion, of course, is to deny that LGB people with developmental disabilities exist, their in/visibility, as previously analysed. There are other exclusionary practices that impact the choice, power, and control of LGB people with disabilities that need to be uncovered. Firstly, many mainstream social services providers do not see people with developmental disabilities as being part of their mandate. It is as if someone with a developmental disability is so exotic, so-othered, that his or her needs cannot possibly be addressed by a mainstream service. Jenn explains: You know people running an employment program, and this is not meant to be unfair to them and this is not, people are not doing this to be mean. Like I'm trying to run an employment program, this person has an addiction issue, they need an addiction service. No, because I am running in employment program. Yet, this person's employment difficulty is really related to their addiction issues. Those work together, so you face the same thing. This young person is in an employment program, but one of the barriers they face is that they're out and gay, and we need to know how to deal with discrimination and human-rights abuses. But they come across, that is all perfectly within the realm of Employment Program, as far as I am concerned. But not all employment counsellors are going to see that. Not only is resource access precarious for LGB-identified people with developmental disabilities, indeed their very relationship with their caregivers can be as well. Although Shelley talks about resources in narrower terms, referring mainly to printed materials, she concurs that people with developmental disabilities are forced to rely heavily upon their (often paid) support system for information about sexuality: Shelley: For the most part we are dealing with people who are caregivers, people who were working on the front lines. So they call you up and order material, or they pick up stuff at conferences, and they take it and use it as they see fit. So we really have no way of knowing. That's one of the frustrating things is not really having any way of tracking where it's going. Whether it's going into a big black hole or whether it is actually getting into people's hands. Scott: So it is hard to say. So is what you're saying, from the consumer standpoint, if we define the consumer as the actual person[s] with developmental disabilities, it is hard to say if they're getting the information or not? Shelley: It is impossible to say. "Straight" Recruitment or Compulsory Heterosexuality 87 While it may not be possible to determine whether people with disabilities obtain "official" sexuality resources, it is certain that they hear messages about sexuality all the time. In fact, heterosexual regulation can be blunt, dehumanising queer and/or questioning sexual performances into mere "behaviours:" Alisa: I've had caregivers, the caregivers that are calling in (pause) not because, generally speaking and unfortunately, they're not calling to support their client's choice of sexual orientation. But in a response to a situation that has occurred... And they're [caregivers] looking to do behaviour modification...to teach them correct appropriate sexual behaviour [Alisa's emphases] were the words that I have been told. Scott: Which is? Alisa: Heterosexuality. That's a quote! An even more damaging example of compulsory heterosexuality is the message that any behaviour—even violent heterosexual acts—is more tolerable than same-sex expression. The following graphically exemplifies the "toleration continuum" labelled by Scotti et al., (1996a) and described in Chapter One. Jenn speaks: It was not an unusual thing, and I think I'd heard this two or three times, just because it struck me in such a personal way. Where I would be out in the community in a workshop with parents or service providers who would say, "You know I have a client who is sexually aggressive towards other clients, or is masturbating in public all the time." And then say, "Oh well, you know, I can deal with that, you know at least they're not gay." [Emphases added]. You know, "at least they're not a homosexual." That kind of comment would come up, and trying to never let it escape without comment. But also knowing that I didn't want to make a bigger deal out of it ...then [pause] because you have your own fear, when you are queer and in the field, of being accused of pushing your own agenda, right? But I had to tell them that that was not OK. It is strange that consensual same-sex relationships and sexuality are perceived as somehow scarier than (presumably) heterosexual acts of sexual aggression. At the same time, to point out the absurdity of such logic to workshop participants was truly frightful for Jenn. She felt that her own identification as a bisexual person placed her in 88 a very precarious position in terms of being able to effectively challenge such heterosexist/ableisitc notions. Alisa recounts other examples of hetero-sexism, especially insidious are attitudes that masquerade as concern for people with disabilities: I'm still getting most parents calling and saying, "I want to make them normal," like this so hard for them, with the developmental disability anyways, this one is just too much—they will be a social pariah; they will be socially unacceptable; they will not have a peer group. They will not, (pause) [for] so many parents just having a child with a disability imposes so many more challenges that when sexual orientation is drawn into the mix, [they] sort of throw up their hands and say, "This is one too many things." But, perhaps the most maddening of all, is the manifestation of heterosexism through equity arguments—the appeal to (perverted) reason. "No, it's not appropriate forme as a teacher to encourage one sexual orientation over another," was a comment that Jenn heard more than once during her career at S S R N . Clearly then, homophobia, heterosexism, and heteronormativity operate within the geographic and political confines in which these key participants live. To repeat, the hope here is to deepen our appreciation of the courage and struggle of the key participants in their struggle to identify as GB. Gay and Bisexual Men with Developmental Disabilities Introduction to the Key Participants Introduction In many ways, the central tensions in this piece have to do with the work of identification (Goffman, 1967) and the effects of dis-identification (Hodges, 1998). I interviewed seven key participants with a range of developmental disability labels, including autism, Asperger's syndrome, fetal alcohol syndrome (FAS), cerebral palsy, and mild mental handicap. In every case, the developmental disability label was given to key participants. Several participants worked to avoid the effects of such labelling by passing, for example. These participants worked to be normal, as someone without a disability. Another participant attempted to generate identity status (in part) through his disability label. This participant worked to identify as disabled, or more accurately, as someone culturally different. Six participants self-identified as gay; one, as bisexual. Several participants were victims of gay taunts; in effect, labelled as gay. Being so labelled did not guarantee a gay identity within LGB communities. Such identity management is not simple. Identity stratagems are not discrete, as simply one set to mitigate sexuality and another for disability. Rather, there are interrelated complexities of label imputation and identity mitigation for these GB men with developmental disabilities. First, I will introduce participants by providing brief sketches of their lives, and highlighting significant moments. In order to facilitate familiarity with the stories of the key participants, I have constructed Table 3 to summarize participants' beliefs, identity management strategies and descriptions. Next, I will explore five strategic themes of queer identity management. These are: . To Be (Gay) or Not To Be (Disabled) • To Be (Gay) or Not To Be (Gay): That is the Context • To Be (Unique) or To Be (Uniquely Gay) • To Be "Profoundly" Gay or To Be "Profoundly" Institutionalized • To Be is To Be Myself! 90 Table 3. Descriptions, Notable Beliefs and Identity Management Strategies of the Key Participants Pseudo-nym Age Ethnicity Official Diagnosis Notable Beliefs and Identity Management Strategies Kenne th Late Twen t ies First Nat ions Feta l A l coho l S y n d r o m e " B e i n g gay" m e a n s that 1 a m normal ; 1 a m not d isab led ! Identity Management Strategy: T o B e (Gay) or Not T o B e (D isab led) L a w r e n c e M id Thir t ies C a u c a s i a n Mi ld Menta l H a n d i c a p 1 a m a se l f - advocacy "star" a m o n g peop le with deve lopmenta l d isabi l i t ies; 1 try hard to act "gay" in L G B contexts . Identity Management Strategy: T o B e (Gay) or Not T o B e (Gay) : That is the Con tex t T h o m a s Late Thir t ies C a u c a s i a n Mi ld Menta l H a n d i c a p 1 a m a se l f - advocacy "star" a m o n g peop le with deve lopmenta l d isabi l i t ies. 1 " a m " gay in L G B contex ts , and resent be ing labe l led a s "d i sab led " in those commun i t i es . Identity Management Strategy: T o B e (Gay) or Not T o B e (Gay) : Tha t is the Con tex t C a l Mid Twen t ies C a u c a s i a n Au t i sm 1 a m not d i sab led ; 1 a m a part of the aut ism culture. B e c a u s e 1 a m autist ic, 1 a m "natural ly" b i sexua l . Identity Management Strategy: T o B e (Unique) or T o B e (Unique ly G a y ) Kev in Mid Fort ies C a u c a s i a n S c h i z o p h r e n i a ; Mi ld Menta l H a n d i c a p 1 have surv ived m y sch i zoph ren ia . 1 have surv ived m y homosexua l i t y . Identity Management Strategy: T o B e "Pro found ly " G a y or T o B e "Pro found ly " Insti tut ionalized Er ic Mid For t ies C a u c a s i a n Mi ld Menta l Hand i cap ; Ce reb ra l P a l s y ; Anx ie ty D isorder ; Ep i l epsy 1 have a disabi l i ty. 1 " a m " gay , and 1 a m at p e a c e with mysel f . Identity Management Strategy: T o B e is T o B e Myse l f ! E v a n Ear ly Thir t ies First Nat ions Feta l A l coho l S y n d r o m e 1 have " F A S " , 1 a m First Nat ions , and 1 a m at p e a c e with mysel f . Identity Management Strategy: T o B e is T o B e Mysel f ! Before I begin, however, a note. Within its fold, special education is notoriously over-represented by students of colour, and people of lower S E S (factors which, I believe, point to socio-cultural determinants of disability.) I interviewed all (qualified) persons interested in participating in the study. So, it may not be surprising that two key participants are First Nations persons (see Borthwick, 1996; Harry & Anderson, 1995). Ethnic and racial diversity provided some interesting and further complexities to these identity management stories of these GB men with developmental disabilities. I begin with Kenneth. Kenneth / call myself gay, 'cause you know, why not? You know this, you know this. You know I was gay, actually I think it was around eight years, actually. I think 1988, yeah that's how I did it, yeah. -Kenneth I interviewed Kenneth on the footsteps of the downtown library in a large metropolitan Canadian city, far away from any disability-related service; the locale was his choice. His caregiver, an acquaintance, informed him about the study. Kenneth is First Nations, although he did not acknowledge his heritage even momentarily throughout our interview. In his late twenties, he was impeccably dressed for our interview, sporting a barrage of gay status symbols: designer jeans, a tight fitting T-shirt with a conspicuous label, a neatly fitted leather cap, and fashionable shoes. Although Kenneth did not (nor would he) identify himself as a person with fetal alcohol syndrome (FAS), it is the official diagnosis he has been given. His social life occurs almost entirely in the gay male communities. When asked about his disability, Kenneth replies that he has "not much of a disability...just a little, not too much" since he "has read a lot and got caught up." Kenneth refers to his current care-provider almost as a financial planner; "she just help me actually on my budget." Kenneth's speech is at times, minimal, almost monosyllabic, staccato-like, and mispronounced. In attempting to pass as normal, Kenneth uses all the right words, the normal words—especially those that imply detail and specificity, such as dates, times, and numbers. As a passing strategy, however, it is ineffective, since his facts are often contradictory, often within the same sentence or thought. Despite these communicative lapses, Kenneth appears particularly adept at gay-speak. In stage-whisper style, he 92 peppered our conversation with his travels to gay-themed tourist destinations, his boyfriend, his gym, his workout regime, and his jobs as a waiter/busboy. Indeed, Kenneth readily regaled me with stories of his gay life, including marching in the Pride Parade, hanging out in gay coffee shops, partying at a couple of gay pubs, attending gay bingo, volunteering at local AIDS-related organisations, and going to drag shows. His home life was not so grand. Kenneth has three brothers and two sisters; he grew up in a small Western Canadian town (located in the renowned 'Bible-belt'), first with his birth mother and then with foster parents. He attended "just the regular high school", although it seems likely that he was enrolled in some special education or remedial classes. According to Kenneth, life in foster care was boring and restrictive: "I was stay home a lot, you know I was. I was not going out one bit, you know. You know, I was, I was stuck in the house for good, you know. I not enjoy that." Not only literally housebound, Kenneth experienced the confinement of his caregivers' attitudes— especially with respect to LGB issues. When I asked, "So you didn't feel you could be gay with your foster parents around?". He definitively stated, "No way, no way. No, just like separate, spread apart, you know she goes that way, she goes that way the left side, I go a right hand turn." Living far from LGB meccas, and under such conditions, it was impossible for Kenneth to participate in the communities of his choosing. So he moved out, and he came out. It seems that living on his own remains a significant touchstone of his gay identity, because you can "do anything you want actually, on you [sic] own. Go places, you know." Lawrence If gay means gay? Why can't I just hang around somebody who's gay, you know? -Lawrence I met and interviewed Lawrence at a local non-profit agency, The Laurel Group, my office. Lawrence, diagnosed with a mild mental handicap, learned of this project through a professional advocate for people with disabilities. Lawrence presents as a mid-thirties Caucasian man, dressed casually. He grew up in government-approved group homes, and a foster family's home; Lawrence has no contact with his birth parents. He continues to readily access services for people with disabilities, such as job training initiatives, remedial adult education programs, and semi-independent supported living arrangements. Lawrence was raised among groups of people with developmental disabilities. He is considered to be "high-functioning." Lawrence stated in an almost angry, yet decidedly even-paced tone "I'm starting to turn away from them [people with disabilities], OK. I'm not against handicapped people, OK? It's just that I want to change, and I want to be with normal people." As his story unfolded, it became clear that his frustration is not primarily directed at people with disabilities, but at a bureaucratic system, which often imposed constraints—significant life-(re)defining restrictions. "I've been around handicapped people all my life, and I'm not saying they're not normal, but what I want from a specific individual I can't get, you know." Yet, in disability-related circles, Lawrence feels at home. Lawrence has taken self-advocacy training. Effortlessly, Lawrence "speaks up for himself," but only regarding disability issues. In these contexts, he reportedly exudes confidence; however, this is not the case in gay locales. During our conversations, Lawrence affirmed that he regards gay men to be normal. Although he craves the company of gay men as acquaintances, friends, and partners, he has been unsuccessful in securing any such relationships. Lawrence is extremely frustrated with the lack of access to the gay male communities. In words that betray the residue of able-bodied "social skills training," he pleadingly laments, "I don't want you to 94 think, 'Oh Lawrence—he's just off topics.' I'm not! I'm just telling you that I'm finding it difficult for the regular gay community to accept me—even though I have the credentials of doing things with them." In fact, Lawrence's experience with gay communities, although minimal, has been so repudiating that he is afraid to initiate any contact. He recounts: "I was actually wanting to have a relationship with a gay fellow, but then in my mind I feel, well how will they accept me, because I look normal, I'm all here, but is it because of my mind?" Notice how Lawrence's words reveal a deep longing for membership into the gay community, and for a legitimized identity as "the" gay man. Six years ago, Lawrence disclosed his sexual orientation to his psychiatrist, and since then has only been "out" to very select friends. Although he reasons that "gay means gay," whether one has a disability or not, he is beginning to understand that his reality bespeaks another story. "It's [gay] like a dead word in me. I'm gay, but I can't do nothing about it, just watch videos and look at those papers in the want ads, the personal ads, but I get tired of videos." Thomas ... That's what the gay guys do. The gay guys got tired of dictating what they wanted, and they only did it to get their jollies. The would get their jollies and then they would leave, and that of course left me feeling isolated and lonely, because now I had my gay experience, and I was feeling like a used sponge by the gay community. And, again I felt they were leaving not because I was gay, not because I wasn't gay, but because I had a disability... -Thomas Thomas presents as late thirties, tall, medium-framed with dark curly hair. He dressed very "straight," work-boots, a red and black plaid flannel shirt beneath a quilted nylon black vest, and jeans. Thomas and Eric, another key participant, are friends. I interviewed Eric first, who then described the study to Thomas. Shortly thereafter, Thomas contacted me, and I interviewed him at the same non-profit agency as I did 95 Eric. Despite being diagnosed with a mild mental handicap, Thomas is extremely articulate and reflective. Thomas is a man of contradictions. Of all the GB participants, likely he would be deemed the most successful. He works full time, drives and maintains his own car, travels to foreign countries, and participates actively in certain LGB communities. Yet, Thomas seemed to be the most unhappy and frustrated of all participants. Throughout the interview, Thomas focused upon the "anti-social bias and prejudice that I'm facing out here all of the time." In this sense, Thomas is the most political of all the participants. He understands his personal situation as being directly related to the plight of all people with disabilities in our culture. Thomas recalled stories of extreme bullying, name-calling, and harassment throughout school. Immediately upon entering the educational system, Thomas was placed into a special education class. Typical of its time, the class was a grab-bag of students with myriad needs and myriad levels of support—anybody who did not fit into the mainstream. It was an intimidating setting for Thomas, and certainly not conducive to learning. "It was always a constant fight about, about, about picking on me, and harassing] me, actually, it was just a miserable experience. It was more of 'You leave me alone or go to bug somebody else'. I got along OK with a few of them, but most and, either [they] ignored me, and just teasing. And so it was like that day after day after day." By the time Thomas entered grade 10, educational ideology for people with disabilities was changing and he was integrated into regular classes. Curriculum practice may have been changing but the practice of prejudice was not. Thomas narrates: "I was taken to room 222 and a teacher administered] a curriculum of English and language and stuff on the grade 10 level, until [I could] bring it up to standard, and then [I] moved into the classroom with the rest of the students...[and I took] high school electives like woodworking and plastics." Thomas was finally a legitimate participant within his community school—well, almost. Since he was following the 'regular' curriculum, he assumed he would graduate as any other student. He asked his teacher for the ceremonial details, like the date, the invitation, the graduation gown, etc. His teacher replied "Well, you will get a graduation certificate in the mail when you graduate." And [Thomas] said, "You mean I will be not graduating with the rest of the students?" And he said "No, you'll be getting a certificate in the mail. You will probably get invited to the prom, but you will not be graduating with the rest of students." So, to use the colloquial, the more things change the more they stay the same. Being judged as "less-than" a "regular" person, and simultaneously as "more-than" a person with a developmental disability is a loud refrain throughout Thomas's life. The eldest of four children, his siblings and neighbourhood playmates looked up to him while, at the same time, they taunted him because he took too long to master childhood games and sports. Thomas often made mistakes during his vocational practica; supervisors attributed these to boredom and/or his (supposed) ineptitude. From his perspective, Thomas felt pressured to work faster, but could not do so accurately. Thomas, like Eric, participates in parts of the local LGB scenes, although he too remains on the fringe. In fact, he has had some long-term (albeit turbulent) gay relationships. Yet, Thomas yearns to be in the mainstream of gay culture. Thomas participates in a local gay chat room via his home computer, and this experience reflects critical aspects of his struggle for belonging: The first thing that happened to me when I came on to the group was everybody was asking what's wrong with you? Are you drunk? Are you dumb or something? Why are you typing so irrationally? What's wrong with you? And I said, "Well I'm just typing," and they pick right up on the fact that I had a disability with that (pause). My thought patterns weren't kosher like theirs were. They, they would see me now, after [I have been on the system] a lot, for long time, as the handicapped person, or as Chad's friend, or this is the handicapped person. They thought I was a nice guy, and it [they] would be willing to talk to somebody who thought was nice to chat to. But when you try to go and meet them for coffee, I got spammed a lot. / guess for me, 'gay' is almost more of a learned behaviour than, than what I really am. That's why I can't really determine, don't know if I am gay or not, because everything around me is a learned behaviour ....I've had boyfriends, but not really, I've had one friend that was a very close friend, and I was madly in love with him. And being in love didn't mean just hoppin' in the sack and pumping him 'til he, you know whatever. I mean, being in love with him meant I would have wanted to spend the rest of my life with him, and he was a good friend. Anytime I thought of him I just, I got chills in my body. -Cal Cal appears as mid-twenties; he presented as fashionable, if slightly off-beat. I interviewed Cal on a private patio section of a local restaurant, and again in a nearby city park. Cal was informed of this research through mutual acquaintances. He is loudly talkative or "hyper-verbal," as he referred to himself. An animated speaker, Cal enjoys spinning fantastic, entertaining—if at times unbelievable—stories. He alternately self-identifies as a person with Asperger's Syndrome and high functioning autism (HFA). In fact, Cal participates in an advocacy/support group of like individuals. This (almost) cloistered group values its independence, and is almost suspicious of anyone without a disability. He feels very comfortable and accepted there; "I trust them with my life" he declared. Although reluctant to identify as GB , Cal has participated in local LGB communities. Cal is very different from Lawrence, who is apprehensive, if not fearful, of LGB people and communities. In contrast, according to Cal , the autistic brain is "superior since it is 50% male and 50% female," leading him to conclude that people with autism are literally "hard-wired" to be bisexual. Unlike Eric, who has found a home in the LGB cultures, Cal feels most affirmed in the "disability culture." Cal described HFA/Asperger's Syndrome as a high-status identity rather than a condition, diagnosis, or disability. Indeed, he declared Albert Einstein and Bill Gates as people with HFA. His affiliation with the HFA support group has influenced him to forge his autism-as-status identification. During the interviews, Cal asserted his super-intelligence: "I'm not a bull-shitter. I'm also more intelligent than a lot of people and that scares people." Yet sadly, if not predictably, Cai experiences indisputable oppression outside of this community. For instance, he repeatedly spoke of his material deprivation. Although speaking zealously about his enormous financial potential with a number of companies, selling anything from vitamins to cleaning products, in reality the companies are pyramid schemes, and at a subsequent interview, he indicated that he abandoned those plans. Actually, Cai has had a number of low-paying, almost exploitative jobs: / was at market research companies; I dealt with a lot of people who are idiots, who mistreat people. I worked for a lot of restaurants where they underpay me or they asked me to work under the table. And they treat me very badly. One guy I worked 12 hour shifts for four days, four days a week, and when they decided to dismiss me because they didn't like me; they didn't wanna [sic] pay me 'cause they thought that it was a waste of time 'cause I didn't do work. Consequently, Cai lives with his mother on government sponsored disability benefits. His mother appears very supportive of all his endeavours, his vocational struggles, his fine art painting, and his political advocacy for people with HFA and Asperger's Syndrome. Cal's parents are divorced, and he has seen little of his father, which appears to be particularly troublesome for him. Cai interprets limited male role models as the reason that he is attracted to men: "Sometimes I wanted attention from an older man, because I lacked a father, and a lot of people called me faggot." This statement seems somehow at odds with Cal's theory that he has a bisexual brain. Although Cai lacked a father, he does not lack ingenuity. Perhaps the queerest of all participants, he performs the "autistic" to become the "gay:" Sometimes I act severely autistic. I poke my belly button like this and I talk in a really weird voice and I act like ...I put on this act that I'm severely autistic as an autistic savant, and when people see me they look at me and they know that there is something different about me. I guess because I'm tired of being labelled autistic, so if I'm gonna [sic] be autistic I'm gonna [sic] be autistic. And I literally put it on that I'm a helpless defenceless little handicapped guy... I've often been very rejected, and I find the only time that I've really been able to talk with them without being told to fuck-off or something is when I pat my tummy and I act severely autistic. I sort of imitate this autistic guy I met, you know, and people think I'm mentally retarded. They are nice to me because... and they laugh at me because they realize that I'm an innocent little thing that they could go to jail for the rest of their life if they decided to hurt. And a that's how I've been able to get in the [local sports team] changing room and that's how I've been able to talk to people about things that I wouldn't otherwise be able to talk to them about. It's been a bit of a game forme. Kevin "/ was very suicidal...about my homosexuality, and the doctor told me just talk about why you are scared of girls', but, I mean that sent me off the wall." -Kevin If Lawrence was afraid of rejection by G B men, Kevin was terrified of GB men, period. He was markedly frightened of his "homosexuality" (although that is changing). Kevin has schizophrenia. He had developed severe delusions regarding his "homosexuality" when in high school. Kevin surmises that these delusions "did disrupt my learning abilities. It took a long time [pregnant pause] for my intellect to recover, that was a very scarring experience." Kevin's mild intellectual impairments are the result of a "cognitive break-down" due to his (previously) untreated schizophrenia. Kevin has dual diagnoses; his primary diagnosis then is not that of a developmental disability, but mental illness. In efforts to re-build his life, Kevin attends A Safe Place (a group designed for GB men with developmental disabilities), one-to-one counselling sessions, and a job-training program. Mitch, A Safe Place counsellor, informed Kevin about this study. I interviewed Kevin in a secluded section of a downtown park in the West Coast American city in which he resides. The park is picturesque, rectangular with large trees and park benches symmetrically spaced and placed about its perimeter; a statue adorned its centre. Kevin sat in contrast to the contrived nature of the setting, his loosely fitting trench coat, thick rimmed glasses, and unaffected manner bespoke his unpretentious nature. Indeed, Kevin defies stereotypes. He presented as an imposing 1 man in his late forties, but his physical presence belied his self-proclaimed "passive" character. "I just don't want to make waves," Kevin maintained. When Kevin first came out to a psychiatrist, the doctor asked: "Why are you afraid of girls?" Kevin explained that this event precipitated a downward spiral. He became desperate. On his way down, Kevin even consented to "conversion therapy" to "become heterosexual." His mother had schizophrenia, and despite this strong familial history, his mental illness was left unchecked, and so, his delusions worsened, particularly his delusions around "his homosexuality." Kevin remembers, "I thought homosexuality was evil," that I was "doomed to hell," and that "people that I wanted to be honest with in high school were after me." Eventually, he became homeless, and even "attempted suicide over the fact that [he] used to masturbate over homosexual fantasies." Happily, Kevin now lives on his own. Since all residents in his housing complex are living with mental illness, he feels a sense of connection and safety. Coincidentally, there are other LGB folk living there, and so he has begun to make tentative steps into LGB communities. At this time, Kevin's goal is to "develop fraternal or platonic relationships with other [GB] guys." Kevin is beginning to understand that "being gay" can be a cultural identity, a positive expression of self. When asked directly about what "gay" means, however, almost without notice he responded using repressive medical dogma: "I developed a weak sense of my own masculinity because my mother thought sports were evil, and I never developed a sense of camaraderie with other men. So that...contributed to my homosexuality." Given his history with the mental health system, it is not surprising that re-establishing trust in people and most especially with social service providers is a huge concern for him. The up-side is that, little by little, Kevin seems to be learning how to trust in himself. 1 Eric The very first time I got brave and went to the gay community centre, it was really funny! A man comes out of the door and I start to take a seizure. -Eric Eric, like his friend Thomas, is very active in LGB communities and communities of persons with disabilities. I interviewed Eric at a local non-profit organization located in a medium-sized city in Western Canada. Through a collegial contact, Eric came to know about this project. Eric described his complex set of diagnoses, including an anxiety disorder, epilepsy, and a mild case of cerebral palsy that "did affect me from being a slow-learner," although he has a very relaxed, congenial, and truly delightful demeanour. Appearing in his late forties, he was dressed casually in jeans, a ball cap, and T-shirt with logo and sports jacket. Unlike Lawrence and Kevin, Eric was raised by a very stable family, and spent most of his life in a small Western community. Apparently, small town life had benefits for Eric. In his younger years, he was integrated into mainstream classrooms at school, before inclusion of people with disabilities became "best practice." The school was too small to have a segregated educational program. Eric did attend remedial programs throughout high school and post-graduate years. Having successfully completed vocational training at a local college, Eric was able to secure full-time employment as a filing clerk. "The best job I ever had," he said. Although Eric has been self-sufficient during his life (he drove and maintained his own vehicle) at the time of the interview he was not. Eric grew up with "over-protective" parents, and still maintains strong ties with his immediate and extended families. He expressed both heart-felt appreciation and heart-hardened weariness for his family's financial and emotional shelter. For example, while he was in his twenties, Eric had an intimate relationship with a man; he came out to his 1 parents. Remarkably, very soon thereafter, he married a woman—a real shotgun wedding! "I met this girl, and ended up getting married to please the family, and it didn't please me, but it pleased the family," Eric reasoned. Although he remained married for a number of years, he described the experience as "feeling as though I don't belong." Finally, confused and frustrated, he turned to his family doctor for help. The doctor asked: "If your ex-boyfriend came to you, and you had your choice between him and Betty [his wife], who would you pick?" Eric replied, "I would pick him " and the doctor said, "OK, you're gay." The doctor's "certification" seemed to mark a turning point in Eric's life, for after that he gained confidence in his chosen identity, and began, once again, to come out of the closet. Eric (re)emerged from the confines of culturally-induced heterosexuality, he entered a local gay bar, and promptly had a seizure; "I turn[ed] completely white, and they had to bring me inside." Likely because he is amiable, Eric has found several LGB and LGB-positive communities that have 'brought him inside.' Evan (and his partner Ernie) "You know I am FAS right? Oh, you know, Fags Are Silly! You know I am FAS! ...I started to do little titles for that..because I think that was my, part of my expression of my healing." -Evan Evan learned of the study through pamphlets distributed at a booth that I staffed at the local 1999 Pride Festival. I interviewed Evan and his partner, Ernie, at their apartment in the gay section of a major city. Like Kenneth, Evan is of Aboriginal descent; however, unlike Kenneth, Evan enthusiastically, graciously, and respectfully embraces all aspects of his identity—he is unafraid and unashamed to explore the many facets of his complex self. Stated queerly, he is unafraid to play many different roles. During the interview, he was dramatically expressive with his bodily gestures, facial countenance, and vocal cadence. He was draped in colourful, sweeping clothes, and flowing jewellery. An extrovert, he held court while his partner and I listened as he comedically and thoughtfully deliberated upon life. Evan has many creative and lively interests, including dancing, painting, and singing; however, he also has more introspective pass times such as counselling friends, exploring his Native spirituality, volunteering for several healing and health-related organizations, and sustaining deep connections with people. Evan was diagnosed with FAS at an early age, but not until recently has he come to understand what FAS means, at least what it means "officially." Until a short while ago, Evan wondered "What is [FAS] going to do? Is it going to go totally crazy? Is it going to get out of hand?" Given the challenges that Evan has been presented with, it is a testament to his character that he has lived a relatively stable and happy life. He was raised alternately by his foster parents, his foster sister, another foster relative, and by residential group-home staff. In his early twenties, Evan connected with his biological family for the first time. Living several provinces away, his brother and sister eagerly drove through many, many miles of wintry Canadian highway; the three had an emotional rendezvous. Evan vividly recalls the encounter. "It was time to meet my brother. It was time to meet my real brother, and I just remember this enormous power surging through my body. We were in the car, and we were going over there, and I remember the hotel that he was at. I was standing in the hallway and he opened up the door, and we just embraced for the longest time." Evan decided to return to his newly-found roots. He made the long journey back with his siblings, and began living on the reservation. From our conversations, it appeared that—regardless of circumstance—Evan lives out his entire self on his sleeve, and life on the reservation seemed no different. He immediately befriended his gay cousin, who "was a feather holder, a medicine man, 1 which in the Aboriginal communities is a very high honour. When you become that you have reached the limit...he was the most amazing Aboriginal man that [I] have ever met." Reportedly, Evan has always been candid, so coming out seemed less about divulging a secret and more about figuring out his place in the world. Coming out means "being crazy and as silly as I want;" it means "just being yourself, and loving yourself, and enjoying yourself." In this regard, his journey has been more personal than public. His self-acceptance is remarkable, given the fact that twice he has been severely "gay-bashed." Perhaps because the label FAS was imputed by others, and not acquired by one's self, it has been of great concern for a considerable time. To Evan, FAS was mysterious and unknown. He saw no obvious connection between FAS and himself. The unfamiliar concerned Evan. Not surprisingly then, Evan's most fervent plea to ameliorate educational practice was to inform students about the labels they are given. His partner Ernie investigated the characteristics, symptomology, and attributes of FAS. In fact, it was through Ernie that Evan developed a medical understanding of the label FAS. In what seems to be indicative of Evan's style and life outlook, he validates the positive aspects he associates with FAS, namely, "an amazing memory when it comes to certain things," an avid curiosity, "and the sexual part, well, I just go on for days, and days, and days." 105 "To be, or not to be, —that is the question: — Whether 'tis nobler in the mind to suffer The slings and arrows of outrageous fortune Or to take arms against a sea of troubles, And by opposing end them?" from Shakespeare, W. Hamlet, Prince of Denmark - 1601 -Act III. - Scene 1. - Rows: 56-61. Queer Identity Management and Disabled Participation The theme, queer identity management and disabled participation, is actually two closely related sub-themes, the first of which has to do with strategies that participants employed in various contexts (Goffman, 1967). Although every participant negotiated his identity through a myriad of tactics, for purposes of explication, participants are grouped here according to significant strategy clusters. Such an arrangement is not meant to imply that participants only performed as their respective clusters suggest. However, participants included under a particular rubric certainly employed those strategies extensively during the interviews.8 The second sub-theme has to do with participation; in other words, how participants saw themselves in LGB communities and in communities of people with disabilities. What is at stake for the key participants is whether they felt legitimated or not in these cultural contexts (see Lave and Wenger, 1991). Legitimization is closely associated with identification, but they are not one and the same. Some participants identified as G B , but at the same time recognised that the LGB communities did not so condone them. Strategy One: To Be (Gay) or Not To Be (Disabled) As stated, Kenneth identifies as gay; according to his own logic, he does not identify as disabled. Such identity negotiation is tricky and inherently contradictory. To Kenneth, "being gay" automatically means he does not have FAS. On one level, since he is gay, he has no (disability) stigma to manage. To be gay is to be normal. The "gayer" he presents himself, the more able he presents himself. So, Kenneth acted really gay in order to be really able. Certainly, he literally behaved as though we were acquaintances, two gay male-insiders, rather than a researcher-researched interaction. 8 As an aside, it is problematic to write about gay identity from a queer theoretical precept, since acts of writing and labelling in themselves (e.g.: he "came out") imply a degree of certitude. Many times participants speak of their experiences or their identities in 'actual' terms. I will attempt to elucidate a queerer understanding where possible. He played "gay," and it appears that he does so across audiences—gay, straight, disabled, etc. On another level, that he consciously and endlessly repeats the appropriate gay signifiers and status generators speaks to both the instability of (anyone's) gay identification, and also the impossibility of the I'm-gay-therefore-I'm-normal, normification strategy. As this picture of Kenneth emerged throughout our interviews, perhaps I was the one who could not see the artistry of his gay performance. In the beginning of the interview, I attempted to clarify some confusing details to better understand his story. For example, Kenneth interchanged seemingly important "facts;" he referred to his lover by two different, but similarly sounding, names. I inquired about certain discrepancies, yet Kenneth seemed unaffected, unfazed, and unwilling to address them. He kept on talking as though nothing had happened. It is possible that he did not understand my questions, and therefore could not answer them. At the same time, he may have well understood and continued speaking as a passing strategy. Indeed, at one point, Kenneth told me as much: Scott: Your gay friends, do they ever ask about your disability? Or um, do they ask you those things sometimes? What do you say? Kenneth: No. Ah, they don't say that, you know, they don't know about it. Just ah start talking [unintelligible] that's how, that's how I do it. [Emphases added]. Scott: Oh OK. Kenneth: Yeah, that's how, that's how. As much as Kenneth thinks of himself as gay, and therefore not disabled, the phrase "that's how I do it" bespeaks another reality—a reality that, at times, eclipsed my awareness. Overall, Kenneth's story was the most consistently inconsistent. From a purely factual standpoint, there was little coherence in his account; however, from an identity 108 management standpoint there was incredible congruity—much "reliability," so to speak. Kenneth consistently employed strategies to pass as normal, to pass as gay. In fact, it would seem to Kenneth that the gay/normal identification not only negates "being disabled," but apparently the strategy may deny other cultural memberships. Kenneth is a First Nations man. At no time during our interviews did he even tangentially refer to his Aboriginal heritage. He does not belong to any group connected in any way to his Native roots. There is a possibility that gay/normal eclipses Kenneth's Native roots. It seems likely that even Kenneth's living arrangements have aided him in fashioning his gay identity. He lived with Todd, then Will, two openly gay caregivers. Will and Todd have supported a variety of people with disabilities in their homes, most of whom had greater intellectual challenges than Kenneth. To Kenneth, a developmental disability could very well imply a severe intellectual disability, a vastly different performance than his own. Likely, Kenneth saw care-giving as an occupation that gay men do. During the interview, we talked about Edith, his current caregiver. Kenneth spoke of her in a way that did not implicate himself as a "client." "She have ah, she have lots of clients actually work with, [pause] actually, you know. She have a six peoples, ten people she work [sic] with. She she's a gone all day you know, disabilities ah, peoples you know, yeah, yeah." So, he may even regard himself as a paid caregiver—a fact that was substantiated by Will. "Well, he would act as though he was a [life skills] worker and ...he plays that role although he doesn't have the ability to deal with it well." Hence, Kenneth has no opinion on life with a disability, or on people with disabilities, even when questioned directly. Interestingly, when his disability gave him status as an extremely unique gay person, he was quite willing to acknowledge the label, "I am the only one." Again, Kenneth's words betray his gay-normal identity strategy. 109 Strategy Two: To Be (Gay) or Not To Be (Gay): That is the Context Unlike Kenneth, Lawrence performs gay in gay contexts, and straight in non-gay contexts (mostly communities of persons with disabilities). Stigma management occurs in mixed company, between 'normals' and those stigmatized (Goffman, 1967). The constitution of Lawrence's immediate audience defines his (situated) normal. Based on his responses, so completely do his identity management strategies shift that there are almost two independent identifications; however, the gay Lawrence and the Lawrence with a disability do not enjoy the same status or level of peer acceptance within their respective communities. In contexts of people with disabilities, Lawrence reports confidence. He participates in self-advocacy groups and on boards of non-profit habilitative organisations for people with developmental disabilities. Lawrence gives speeches on life as someone labelled with a developmental disability, and is an esteemed activist. As an empowered person with a disability, he is unafraid of asserting his rights, or point of view. "I know what I want, and I put myself first before anybody else, like my opinions do count" he states. Refreshingly, for example, Lawrence negotiated the terms of our interview and his research participation: I've participated in other research projects through other organizations, and I gave them some thoughts, and I went, "OK sure I'll help you with your research project. OK fine. "And but, the thing I didn't like after the project was done, the person or the organization got all the ... the fame and glory for, "Oh thank-you Mr. X for doing this research, and you spoke to Mr. Y" And then I'm feeling, "Well what do I get out of it?" Nothing nobody wants to communicate with me anymore or include me in future events. So that's how I felt I've been used in that way, and they got all the fame, and whatever you know so. Yeah I expect you, if you are going to write a research project, if you're gonna write papers or a book, I'd like to be involved in that...I feel this would be a beneficial project then for the both of us. When I was regarded as a researcher, Lawrence performed the emancipated, liberated, and capable person with a disability. For example, I asked Lawrence about gay prejudice within disability communities, and he chastised me "I don't know all the answers to, to everything, you know about the disability people, you know." Lawrence did comment on this study, however: Well, even if you said the first thing, [to others with disabilities] like, like what we're doing now, like this type of project, they would go "Oh he is gay, you know." They'd go (makes cutting sound and gestures to neck)... That's right, it's "God, he's a fag, you know." But they do that in the regular, normal, people who aren't handicapped [have the] same attitudes, but I think with handicapped people, we're the ones that get the brunt, you know. Lawrence's identity strategies to manage the gay stigma in the world of people with disabilities are simple, he simply does not talk about it; "don't rock the boat." At different parts of the interviews, Lawrence regarded me almost as an ambassador, or emigration officer for the LGB communities, and when he did so, his demeanour changed dramatically. As Lawrence described the LGB communities, his voice became very hushed, secretive, almost clandestine-like in tone—it evoked images of the 1950's underground 'homosexual' culture. Minimally and very peripherally does he participate in LGB communities, although he maintains his desire to participate more significantly. Hence, Lawrence continually pleaded throughout the interviews: "Will they accept me?", "Will I be accepted by other men?", "I don't want them to see my disability, you know. Right, so I'd have to act exactly like they act...to be involved. I want to be involved. I want to be open about my, my being gay you know, but will it be accepted by other men then?" Lawrence's participation in LGB life is seriously more limited than Kenneth's. Lawrence has not learned to pass in the gay community, he has a modicum of identity strategies for that audience. Ironically, part of his "handicap" in accessing LGB communities may be self-advocacy training. The self-advocacy movement primarily grew out of dissatisfaction with the social service and educational systems designed for people with disabilities. The movement is critical of able-bodied practice (Dybwad & Bersani, 1996), although paradoxically, it has remained tied to such professionals. Within this movement Lawrence is a 'star,' and he noted that he was validated for his courage, strength, and wisdom for advocating for himself and for others with disabilities. Validation by able-bodied professionals, however, is far different than validation by gay men in the local LGB scene, which is what he craved. Lawrence is finding out the hard way that coming out to oneself as gay is much different than seeking group acceptance and membership from the gay community. Or, to state it another way, to perform the role of 'the gay' requires more than willingness on the part of the actor. The other actors in the ensemble must sanction you. That's the thing I'm lacking, it's not because I can't communicate and get out and do things, it's just a lack of being involved. And I feel that with the gay community, they don't want people that are handicapped involved. Even though they know themselves, that their own person is gay, why can't they accept a person also? If gay means gay, you know. The sad fact is that gay does not mean gay; gay, culturally speaking, means white, male, successful, fit, and (most relevantly here), able-bodied. Lawrence is hitting the lived wall of the gay male stereotype. At the same time, he is beginning to ponder ways to manage his disability, ways in which he could pass: "I don't want them to see my disability, you know. Right, so I'd have to act exactly like they act." Thomas is just as frustrated as Lawrence. Unlike Kenneth, content to remain on the periphery at many gay venues, Lawrence and Thomas seem to demand full participation. Thomas illustrates: Oh yes, I had a whole year of the therapy, and she's, you know she [the therapist] told me the same things... Try to be more active and more involved and try to concentrate on other activities, other things than around, around sex, hang around with friends, and all that. And I was like, "Yes I did all that, and where did it get me? What did get me?" It got me "Hi, How's it goin'?" Nice person, nice to see you, and then it [sic] would leave. In contrast, Thomas explains how a gay acquaintance without disabilities gets accepted into the local gay scene: Here's a good example, here [sic] an example. He talks to a lot of these people; a lot of these people are cute, desirable and attractive. They're smart, they know it, they know they're smart intellectually. They know they can do stuff. So, he has all these people as close friends and I don't question that, and therefore they accept a man [for] who he is. And then he contributes his interesting personality. So that boosts his ego, that boosts self-esteem. But when it comes to me, I'm not nearly as capable as his friends are; I am not nearly as capable as his other friends are. Therefore, I am not as valuable [a] person is they are. At the same time, both Thomas and Lawrence have an idealized—if not somewhat romantic—vision of LGB life, the gay 'GQ'. So, in some senses, both men were doomed to be frustrated, as they desired a kind of (unbeknownst to them) Utopia—a life unattainable by almost all gay men. Although Thomas did not feel fully validated by LGB communities, he still had to manage "being gay" in contexts of people with disabilities. This was easy. Thomas recounted working in the training facility for people with developmental disabilities "No there wasn't any of that, [gay taunting] because I wasn't perceived as being gay by everybody." An environment created exclusively for people with developmental disabilities not surprisingly almost solely defines people through its stated purpose. People do not easily register other identity-markers, whether visible or not, in such environments. In this way, the environment itself managed Thomas's non-gay identification. Thomas too, is a "disability star." He was featured in a video documentary filmed by a community living agency, describing his success in their work experience and training program. In this sense, his disability, or rather his "transcendence" of disability myths, (the eternal child, and the helpless invalid) was a source of pride. But again, there is a price extracted for being a disability star. As with Lawrence, fame was bestowed upon 11 Thomas by able-bodied professionals. At the same time that Thomas was celebrated for having a disability, he was terribly lonely in gay communities, due to disability prejudice. "Well, I was asking for...any help [for] my emotional problems, about being gay, about dealing with the disability." Obviously, there are serious quality of life issues at stake when a person is represented as a star, and yet, an entire aspect of one's identity, namely one's sexuality, is ignored. To say the least, such ignorance creates vulnerability, a theme that will be extensively explored in Chapter Six. Both Lawrence and Thomas were diagnosed with a mild mental or "borderline" handicap. Notwithstanding the artificiality of such diagnoses, the two men presented as articulate, well-spoken and thoughtful. They "spoke on topic;" they "took turns" and "made appropriate eye contact" during our conversations. Despite their cultural competencies and accomplishments in the "real world"—cars, jobs, stable housing— they are (understandably) preoccupied with their "intelligence." For "intelligence," "weak or inadequate...language skills," or "a thinking pattern...from left field" were the words that the able-bodied used to discriminate against them. They explained their labels in terms of social exclusion and prejudice, not in organic, biological, educational, medical, or psychological terms. Thomas explained: Thomas: And you say, "No, I'm normal, I'm normal!" And, and then they make some other ridiculous thing about you. And then you think either I have bad looks, your intelligence isn't up there, or both, or are they same thing. Or, or you're gay. And then it's really confused and. Scott: It was a very confusing time for you. Thomas: It was distressing and very confusing! Very distressing, because here we are, everyone else try to socialize develop social net works, and friends and people, and you are being scape-goated for everything everybody wants to. I did meet some nice people or guys, or girls, who would say, "Thomas they're treating you so badly." They would say, "You know I'll be your friend." And I said "that's OK." And then of course that felt like someone here's taking pity on me and I didn't want that. I just want to be treated equally as everybody else. 114 Both Lawrence and Thomas were "out" as disabled (and) gay men. Unlike Kenneth, neither attempted to pass (as not disabled) on my account. Rather, I was seen in a completely different light. Because they understood their primary handicaps as prejudice and social exclusionary practices, they viewed me as either a potential gate-keeper/envoy to the gay community, or as one of Goffman's "wise" helping professionals. Either way, I left each of these interviews feeling strangely dissatisfied. Strategy Three: To Be (Unique) or To Be (Uniquely Gay) Like Thomas and Lawrence, Cai defines his "disability" as a set exclusionary practices. Thomas and Lawrence see disability as an expulsion from the normal. Unlike them, Cai characterises his deviance from the norm as a good thing, as a form of esteemed cultural membership—his disability excludes those who are (merely) normal. In this sense, Cal's identity strategies are the flip-side of those of Thomas and Lawrence. Cai performs disability-as-status; Thomas and Lawrence perform disability-as-almost-(but never quite)-normal. Cal's attitude may be summed up in the colloquial expression "Who wants to be normal?" Therefore, biological, educational, medical, and/or psychological terms are subversively used to substantiate preferred cultural membership. To be a person with HFA or Asperger's Syndrome is to be part of the autistic culture (see www.autistics.org). HFA and Asperger's Syndrome are not stigmas to manage; they are cultures to celebrate! Difference is to be lauded not minimised! In fact, Cai affirms his HFA/Aspergian mind and body in order to authenticate his social standing. As stated earlier, Cai believes there is a veritable autistic brain. Indeed, HFA/Asperger's Syndrome is "in" his blood: / know it's in my blood, and in fact I know; I've had my blood tested. I know that they've been actually able to identify a chromosome in many autistics that are um, that are common. And they think it could be an autistic chromosome, but ah, it's not in every one of the blood cells. But I had my blood tested, and even though this is not the standard of a science. Science will absolutely deny that there's any fact of this, it's in 90%, 98% of my blood cells, which means that if I have children, there's a 98% chance that I will have an autistic child. During our interviews, Cal frequently explained the finer points of HFA/Asperger's Syndrome almost as a public education service. In keeping with his autistic-genius lineage, Cal asserted his intelligence several times throughout our interviews. At one point, he wondered what he should do with his gifts: Even Einstein or famous people, they, whatever they've done has left a mark on society. Some people think it's quite negative but there's often quite positives. I feel I was put on this earth to do that. I mean what is the use of having so much intelligence and so much knowledge, if I can't put it to the betterment of mankind? Cal legitimately participates in the autistic subculture; however, his membership within the LGB communities is seriously limited. His understanding and participation within gay cultures presents interesting contradictions. For example, throughout the interviews, he vacillated between gay identification, and gay dis-identification, between a novice and expert understanding of gay culture: / know so little about the gay community. I don't dress the same way they do. I don't know what the popular music is; I don't know a lot of subliminal things like the way they dress. I know there are certain clothes which 80% of the men who buy them are gay. Believe it or not. I know that Levi's jeans 501 blues is like the number one jeans for gay men. Another apparent contradiction is Cal's self-described lust for men, but a reticence to identify as gay. He refers to men in very erotic terms, "when I see a good-looking man I do find myself attracted to him. I wanna know what he looks like naked," although he never once referred to women in a sexual way. "I felt very close to a woman but I don't think I've ever felt sexually attracted to a woman." Cal speaks: When I associate with women 90% of the time, I can deal very well, very professionally. My mind, my sexuality doesn't get in the way. I'm very professional, and sometimes we can be very good friends and literally more friends than lovers. And when I'm with a man, I tell you something anytime a man has a great butt, I will look at it. Anytime, ah, I see a man who is good-looking that gets in the way of whatever we have to do. I have a psychiatrist who I [sic] not necessarily attracted to, who I really, really admire. But, I mean when I've had therapists or when I've had teachers that are really good looking, I guess it was sexuality, if that's what it was. It really got in the way. Yet, Cai remains unsure of whether he identifies (or will identify) as gay. "I really don't know if I'm gay." This proclamation appears paradoxical. Cai is (unknowingly) questioning of our tacit developmental beliefs about sexuality and desire. That is, cultural assumptions predicate sexual identification upon sexual attraction. While Cai acknowledges a sexual lust for men, he does not easily or necessarily identify as homosexual, gay or bisexual. At the same time, neither does he find gay identification as somehow abhorrent, nor, to psychoanalyze him, does he appear to suffer from internalized homophobia. Queer theorists suggest that unsatiated sexual desire destabilizes notions of "authentic" sexual identification, for desire can never fully be realized, and therefore, never be "properly" bordered or categorized (Butler, 1990, 1991). There is always something else, something unknown, something unspoken. Therefore, "gay" is always and already unclear. In short, there is no simple relationship between desire and identification. In fact, Cai queerly questions the very notion of categories: "Homosexuality" is a learned word, and we have built a society based on labels saying this one is this and that one is that and even for example if you go into a drugstore, you will find shampoos some for black people, some for Asian people, some for White people. You will have shampoos that cater to people who are Indo-Canadian. But 90% of the time is a., those [labels] are put on. I know that when I had bought, my hair—I'm part black, [and] my hair is so much like Black peoples. But when I had bought, what was it, I think it was a hair conditioner called "Dark and Lovely" or was an African product. I can't remember the name of the product I don't have it anymore, but I bought it and there was a black lady at the cashier, and she kinda [sic] looked at me like: "You want that? You know?" Why wouldn't I want that? Is there, do I have not the right to buy it? But she was suggesting that if I'm not Black, don't touch Black products. You know, and, so we build a society based on so many labels that even today when I see people that are gay, I wonder. A lot of people tell me it's not a choice; it's the way they are. Just like somebody's born Asian, that's the way they are; they can't. They don't choose to be Asian...But I often wonder if being homosexual forme is a choice. I can't determine if that's the way I am...Homosexuality is a learned word, and we have built a society based on labels saying this one is this and that one is that. Still, Cal confuses us. We cannot account for his reticence to be gay due to internalized homophobia, familial pressure, or geographic isolation. Neither can we account for his "reticence to be heterosexual" due to lack of opportunity, etc. Not to be too positivist, but possibly due to HFA, Cal's understanding of any sexual identification seems (almost solely) intellectual (see Attwood, 1998; Klin, Volkmar, & Sparrow 2000; Willey & Attwood, 1999). His "arguments" appear logical, although they are contradictory—"homosexuality" is both a "learned behaviour" and an artifact of an "autistic brain." As well, Cal experienced acceptance and a sense of belonging in the autistic subculture, which is characterized as more intellectual than emotional. Cal's (over)-intellectualization of sexual identification may be cultural residue from the autistic society. On the other hand, Cal experienced less than full participation in LGB communities. "I don't blend in very well in the gay community. I am, like I'm on the on the outskirts of the gay community," he states. Rationalization may be an identity management strategy employed to divert attention away from his lack of participation in gay milieus, to skirt the issue. Perhaps, Cal is best understood as Kenneth's alter ego. Kenneth identifies as gay, which precludes, even nullifies any other identification(s)—Aboriginal, etc. As such, the researcher was regarded as a gay acquaintance, a cultural insider. Conversely, Cal identifies as having HFA and Asperger's Syndrome, which revokes any other identification. So, I was regarded more as a researcher, or as a helping professional. Strategy Four: To Be "Profoundly" Gay or To Be "Profoundly" Institutionalized Institutional control can be so profound as to seemingly eclipse one's sense of self— as though the institution completely fixes one's identity. At the same time, the severest 118 authority is often exercised on those with the "severest" of disabilities. Such is the case for Lester and Kevin. Theirs are the stories of identity survival. Yet, even in survival, Lester and Kevin fashioned their own identities in unique and subversive ways. Lester's story is particularly and uniquely subversive, so it will be discussed in the concluding chapter. The effects of the medical/rehabilitative regimes were quite damaging to Kevin. In fact, Kevin even attempted to take his own life due in part, he claimed to the "disgust of my own homosexuality." Kevin's "recriminating attitudes" were exacerbated by medical communities: "A psychologist, when I told him that I was gay, [asked] 'Why you afraid of girls?' Those events triggered off, [lengthy pause] I was very suicidal at that time. I was suicidal. So I think that that was very detrimental." Kevin's latter remark is quite understated! Kevin's life continued to hurl out of control—deeper and deeper into an abyss until eventually he became homeless, a situation he described: / would say you lose a lot of your skills by being homeless and mentally ill. You lose social skills and your hygiene, you know is extremely difficult. You're homeless and to try to find a place to brush your teeth and shampoo your hair. It is just very difficult..It was a very disparaging experience. Deep despair..., [long pause] generally deep despair and severe delusions. Kevin has recovered his life, but there remained significant traces of paranoia during our interview. He appeared calm on that warm, sunny winter day, when suddenly we heard gales of laughter. Immediately, I noticed that Kevin had a look of consternation and alarm! Unbeknownst to us, there was a street performer on the other side of the park and a noisy crowd had gathered. I quickly calmed him:"... [lots of laughter from the street] They're laughing at that jester on the street. Oh, they are laughing at the mime on the street. I think they call it a mime." Earlier Kevin had talked to me about his fears: This about was one of the reasons why I was even paranoid about my homosexuality. I thought it would lose all my friends and be totally mocked and harassed. No, I was very terrified of that. You know being mocked and harassed. 119 So, I was aware that he had a fear of being ridiculed, and that quite possibly he was interpreting the laughter as being directed at him as a form of derision. Perhaps because his untreated schizophrenia nearly cost him his life, Kevin is now very aware of his emotional needs for connection. He maintains membership in various support groups, both professional and grass-roots. Kevin needs to "check-in" with various people during his week in order to prevent delusional thinking from once again taking hold. In order to avoid any intense emotional turmoil, he stated that he wanted only platonic friendships with other gay men. During our conversation, Kevin presented as anxious and enthusiastic to tell his story, but at the same time, I realised that he held me at a distance. For instance, Kevin was the only participant that wanted to know the specific questions that I would ask. Being provided with knowledge of exactly what was happening next, seemed to calm him, and perhaps provided more security. Kevin's story is so gut-wrenching, and he recounts it so very evocatively that there appeared to be no obvious or contrite identity mitigation within the interviews. It seemed htat he was not trying to pass as normal, or gay, or gay-normal. I was regarded as a wise other, since Mitch, the facilitator from A Safe Place, introduced us. He "simply" told me his incredible story. Strategy Five: To Be is To Be Myself! Both Eric and Evan seemed to have found a quiet peace within themselves. In my company at least, neither appeared to have suffered the strain associated with a history of passing. As Corbett (1994) has pointed out, there is an emotional cost to passing; some people feel they are lying to themselves, or resent the "need" to obscure significant aspects of self. Neither Eric nor Evan presented any obvious able-bodied, homophobic, or heterosexist residue from the standpoint of identity regulation. Of course, this could have been interpreted as masterful passing. I did talk with significant people in both their lives, who confirmed Eric and Evan's contented natures. What is completely ironic is the fact that these two men were so vastly different from each other! Eric grew up in a stable family with plenty of extended members; Evan reported a chaotic childhood, living in foster homes, and in residential group homes. Eric presented as Caucasian; Evan, as First Nations. Eric was single ("but looking"); Evan had a partner, (namely Ernie). Eric was diagnosed with an anxiety disorder, epilepsy, mild cerebral palsy, and mild mental handicap; Evan, with FAS. Eric had a stable work history; Evan volunteered much of his time. At the same time, their commonalties significantly and positively impacted their quality of life. Eric and Evan spoke of extended social networks, the importance and practice of spirituality, and the ability to embrace all aspects of self. Evan was on stage at all the times during our conversations. He began building the anticipation by keeping his audience waiting; he was late for the interview. I waited and made small talk with his partner. As soon as Evan made his entrance, he (almost literally) assumed character: "I'm like the Duracell bunny on acid. Really!" Despite the transparent nature of Evan's performances, paradoxically, there was nothing contrived or "put-on" about them. He was completely "out" about everything with me during the interview, his disability, his sexuality—and his show. In fact, quite delightfully, I felt like an "actual" audience member. Quite probably, Evan's highly entertaining and comedic shows have ingratiated him with a number of people. So, this very public, effervescent and expansive identity management strategy then takes over: / sort of lit up the room when I walked into the place [a local community centre], and it was like that every day. I was really not willing to be down and out for anyone. I was not really into it. I just thought "No." I'm not one to do that. This strategy appeared successful in negotiating his FAS; he unabashedly claims that he is "a classic example of an FAS person...—it sounds sort of like a suit label [or] something, right?" At certain points throughout the interviews, Evan's partner, Ernie, acted as a buffer, a delicate and respectful supporting actor. Although a mere sprinkling of moments, Evan did say a few things that most would deem as inappropriate for the given context. At these times, Ernie gently re-directed the conversation. At the same time, these comments were contextualized within Evan's intense and "over-the-top" presentation style. Eric, like Evan, appeared content with life. For instance, Eric is a member of the United church, a church that openly attempts to combat homophobia, heterosexism, and heteronormativity. Eric declared "I feel so accepted there, especially because I've come out to a lot of people there, saying that I'm gay ...There is a couple that drives me to church all the time. The fellow looked like he was a real strict disciplinarian...and I thought 'You would not be the first person that I would tell that I was gay.' And yet I ended up telling him, and he said 'You won't lose us [as friends].'" Eric volunteers in the library at the local AIDS organization in which he also participates in several support programs, and the newsletter committee. The theme of acceptance runs deep through his story: "When I came out here [the AIDS organization] I just had the feeling that I belonged, and I eventually started telling my friends." In addition, Eric attends a sex education and support group for people with developmental disabilities in which he also came out. He received positive feedback from the facilitator and other members. In fact, Eric maintains friendships with several members outside of the group, namely Thomas. At the same time, however, Eric chronicled a history of pleasing his family and acquaintances. These acts of placation and concession included getting married, maintaining silence about being "part of the 122 gay community in [a Western Canadian city] for two years" and associating "with people that were only my friends because I had a car," gravely impacted his life and identity. Many people with disabilities defer to able-bodied persons, and as discussed in Chapter One, this also occurs in research contexts. Participants with developmental disabilities have a tendency to "please the interviewer" (Biklen and Mosely, 1988, p. 159). Pleasing people is not medically or diagnostically indicative of a mild mental handicap; it is however, quite indicative of the all-too-common survival strategies imposed upon people with developmental disabilities. They often depend upon able-bodied persons for financial and emotional shelter, etc. The lingering question, then is, how is Eric's self-reported charmed life to be understood —as a re-telling of "acceptable" stories, or as "the real thing?" 1 C H A P T E R FIVE We Are Family: Supporting Professionals and Paraprofessionals The family typically represents a significant context against/through/with which people identify. Indeed, for folks with developmental disabilities, family members are perhaps even more vital in the management of identity since they often act as gatekeepers to the kinds of communities in which their offspring can participate. Since self-identified and "out" G B men with developmental disabilities are (seemingly) rare, understanding how families supported such members is an important part of this project. Although it was my intention to interview significant family members of key participants, for various reasons, it was not really possible to do so. For example, Lawrence and Kevin are—in greater and lesser degrees—estranged from their families. Lawrence's foster father sexually abused him, which proved to have lasting effects, so he chooses not to keep in contact with him. Kevin's mother, who suffered from extreme mental illness and who was reportedly intensely homophobic, has passed away. Of Kevin's siblings, only one sister is tolerant of his gay identification. Scott: Do you have any brothers or sisters? Kevin: Yes I do. I have an older sister, a younger sister, and an older brother. Scott: So, you are the third (in birth order). Do they know that you are gay? Kevin: Yes, they do. I announced it to them. Scott: And how were they about that? Kevin: The younger sister is supportive. The older sister, (pause) she derides gays. I am not able to really talk about with her because it just offends her so much. Although Thomas, Cal and Eric are "out" to their families, certain of their relations tolerated their sexual identification so long as it was not discussed, the "Don't Ask, Don't Tell" families. Cal "remember[s] one of [my mother's co-workers]; ...he came up to my mother, and he says 'Boy, is your son ever gay', and my mother just broke out in tears." When Thomas was both smitten and troubled by a male prostitute, he needed to talk to someone: Like for instance I have this friend Lance, who was a hustler. He was a gay hustler, and I was having troubles with him ...He was being a real asshole, and I would complain to my brother. Lance is being such a blah, blah, blah, blah. And my brother Sean say [sic], "Thomas you're talking about this guy like he is your lover. Is he really your lover?" And I thought, "Oh" and I thought, "My goodness I touched on the subject right there." I said, "No, no, no, he's a good friend; [he] is a good friend is just being a real asshole." So, he could see across that line... My brother was saying, "You're bitching about him like you should care about him. You're more personally involved with him than you would be in a [presumably heterosexual] relationship." So, you know, he is getting that sense, like "Why you are you telling me all of this? Like, this is something like you are talking about your girlfriend." Likewise, Eric's father was not at all supportive: As a matter of fact he would condemn that [gay-identification], and one time I was not feeling too good. And he said, "Why that's what happens when you have that kind of [same-sex]." I said, "No, I used a condom." But he would say little things like I showed him [the local] mall for the first time ...We were looking around, and he would see this dress, and he would say and he would say, "Here's this dress." And I thought "Oh you!" I decided it was unethical to interview these family members. To do so could have radically changed these relationships for Thomas, Cal , and Eric. Only Evan and Eric claimed to have family members who were positively and unabashedly approving; Eric's "gay nephew," who "help[s] me with the gay thing sometimes," definitely was supportive. So, I asked Eric several times if I could interview his nephew, who, like Evan's folks, lives far away, but Eric was evasive. He told me that he could not find the phone number. After a time, I concluded that Eric did not want me to contact his nephew for whatever reason. Evan's folks live in a distant city and declined a telephone interview. In short, as Lucy Rider (a self-identified lesbian with a developmental disability, Shoultz, 1995) was compelled to fight for her right to perform "gay," including battling with her own family, to varying degrees and in varying ways, so did these participants. Mitch, a facilitator for A Safe Place for Gay and Bi Men with Developmental Disabilities (introduced momentarily) concurs: Unfortunately I would have to say everybody in the current group has horror stories from their own families...If your family has abandoned you and some have, it boggles my mind, because it seems extreme, the people that need the most support from your family have been pretty much abandoned. Or at least pushed aside or you know, when one more blow to whatever they whenever they realised that the child had a disability and now that he's gay too. Fairly harsh stuff! Yet, these participants, like us all, need support in many areas that touch upon our sexualities—intimate (same-sex) relationships are but one example. Families often provide informal counsel and relationship guidance, but not in these participants' lives. At the same time, as detailed in Chapter Three, most participants participated peripherally in gay communities. So, in very real ways, caregivers became significant members, at least significant gay and/or gay-friendly players, in key participants' lives, as was the case in other studies and narratives (Heler,1997,1996; Shoultz, 1995; see also Edgerton, 1993). Thomas explains: / had to come out to Mark (coordinator for supported housing)[Thomas's emphases] because he knew me for years. And it was always a little secret when he came over to visit me, it was just visiting me, you know. But then when I was having those real problems with Lance, being such a not-nice person, I was so stressed there! I was so overwhelmed by this that I had to come out to Mark about it! And he was very understanding, because he said he knew a couple of people in the program, in the housing programs [who] were gay. And he understand[s] the situation about how difficult it is, and dealing with something like disability and gay [at] the same time. And so essentially he said, "Well Thomas, it looks like Lance is a slack-ass. You are just taking it; you would just have to dump him." And I said, "but that's difficult! You know how difficult it is to make friends? Especially with somebody with the disability and then on top of [that] you're gay too?" He said he knows how difficult but that's, "You don't have a choice. You're either going to continue being abused by this guy, or you go out alone." As a researcher, I am interested in possibilities of GB identifications for people who are (already) labelled with a developmental disability. Part of "playing the gay role" involves talking about "gay things," including same-sex relationships. Participants indicated that certain helping professionals created safer places to do so, more so than family members and "able-bodied" LGB people. In attempting to understand G B identifications, then, it is necessary to understand how supporting caregivers were supportive of such possibilities. Therefore, I deliberately did not interview homophobic and heterosexist caregivers— people that were not supportive—for several reasons. Perhaps obviously, GB participants did not identify with such caregivers. Second, such attitudes are already well-documented throughout the literature, as shown in Chapter One. This investigation is not about making quantitative generalizations regarding the sexuality attitudes of professionals and paraprofessionals in the field of developmental disability. Still, perhaps a comment is warranted here on the representativeness of the supporting caregivers Will, Mitch, and Judy (including Alisa, Jenn, and Shelley, whom were already introduced). All are LGB-positive, which is not entirely surprising since four people identify as 'queer' in some ways, and the other two as "straight but not narrow." Despite the literature review and the examples of homophobia, heterosexism, and heteronormativity at work within the local context, some readers may get the impression that all caregivers are similarly approving, as the ones in this study are, which is definitely not the case! I asked participants who they felt most supported their G B identifications. Kenneth indicated that Will, an openly gay male caregiver with whom he lived, was invaluable to his identity. Kevin attended A Safe Place, a support and sex-education group exclusive to GB-identified men with disabilities. Mitch facilitates A Safe Place. Although Kevin clearly perceives himself more as a group member than as a "client" of Mitch's, he has supported Kevin in crucial ways. Eric attended sex education classes for people with disabilities. Eric found Judy, the course facilitator, to be a healthy part of his support network. On participants' direction, I interviewed Will, Mitch, and Judy (see Table 4). Supporting Professionals and Paraprofessional (directly) connected to Key Participants C a r e g i v e r and K e y Part ic ipant Pos i t i on /Ro le A g e n c y Respons ib i l i t i es Wi l l suppor ted Kenne th Direct Ca reg i ve r Prov inc ia l Propr ie tary In -Home C a r e P r o g r a m Prov ide direct ca re for three pe rsons with deve lopmen ta l d isabi l i t ies in his own h o m e ; one of w h o w a s K e n n e t h . Mi tch suppor ted Kev in F o u n d e r and C o -facil i tator of A Safe Place for G a y / B i M e n with Deve lopmen ta l Disabi l i t ies (and/or M e n with w h o H a v e S e x with other Men) Superv iso r ; Depar tment of C o m m u n i t y and Fami l y S e r v i c e s : Div is ion of Deve lopmen ta l Disabi l i t ies Co- fac i l i ta tes A Safe Place. A s superv isor , o v e r s e e s a var iety of res ident ia l , vocat iona l and commun i t y p rog rams in local a r e a . J u d y suppor ted Er ic (and T h o m a s ) H e a d C o u n s e l l o r and S e x Educa to r C o m m u n i t y L iv ing Organ iza t ion Faci l i tate a var iety of group p rog rams for peop le with deve lopmen ta l d isabi l i t ies, inc luding Smart Dating: A S e x - E d u c a t i o n , Suppor t and C o u n s e l l i n g G r o u p . GayCare and the Cared-for Will and Kenneth Despite the fact that Kenneth's independence is an integral part of his gay identification, he lived for a time with Will, a direct caregiver. In fact, Kenneth was the only key participant to name a full-time, live-in caregiver in support of a gay identification. Perhaps not surprisingly, Will is openly gay—or in queer terms, he performs "gay." Will operates a proprietary care program within his home, more commonly referred to as "pri-care." He is responsible for the overall health and well-being of people in his care. Among other things, these responsibilities include action plans for residents' health care, nutrition, and recreation/ leisure activities. "Pri-care" contracts are administered and monitored by liaison social workers from the provincial Ministry for Children and Families through the Services to People with Mental Handicaps branch. Will has cared for men with multiple disabilities in his home for about 8 years now, and before that he worked in various capacities as a residential vocational 128 and community support worker for people with disabilities. Will was first introduced to Kenneth while working as a residential supervisor at a local Community Living Agency. Because Will publicly identifies as gay to all Ministry personnel, residents and acquaintances, he was able to effectively support Kenneth in various aspects of "safe" gay identification: It [Kenneth's gay identification] was never discouraged, from even myself, even when he was living with me, and even when I was the supervisor of the apartment program. It was never discouraged. If anything it was more encouraged. You know [as if he were talking to Kenneth], "If you want to do this, if you need to do this, you need to be safe. You need to use prophylactics. Do you have this? Do you understand?" Because actually at one time when I tried to discuss what activities that he might be interested and to sort of say, "Are you aware of this, and if you do this you need to do this?" You know, for example if you are into receiving anal intercourse, you know, your partner should be wearing a condom and stuff like that. Will is privy (perhaps central) to Kenneth's identity management strategy "gay-is-normal." Will's awareness, of course, allowed him to provide the kind of care that perhaps only another "out" gay man could have, this is perhaps the single most important point. Because Will "plays gay" himself, he is aware of the necessary cultural adornments and discourse for such roles—so he can build credibility with Kenneth. (Paradoxically, Will cannot brand Kenneth "gay-credible" in the eyes of most gay male communities, as we shall see later). At he same time, Will recognizes the limits of the gay role and how it is at odds with the role of someone labelled with a developmental disability—how attempting to fashion a gay identity almost unavoidably places Kenneth at emotional and physical risk. For example, realizing that Kenneth needed safer sex information on the one hand, and knowing that Kenneth pretends to know more than he does in order to be normal, Will arranged for Kenneth to have a gay doctor: And I don't think; he couldn't be aware of it because we had one of my goals that I had for him was to make sure he had a gay doctor. I wanted him to have a gay doctor specifically. I knew enough because I found that doctors are less aware. Or they won't ask the extra question especially if they're straight and they assumed that Kenneth is straight. And so I was wanting to have the support for Kenneth and saying, "You know, the gay doctor will ask you what your activities are." Or at least not be as hesitant to say "Maybe you need to take an HIV test." I am aware that Kenneth has had HIV tests I don't know when his last one was, but they had come back negative. In fact, Will feels that "acting gay" has many implications, so he secured almost an entire contingency of gay male health professionals for Kenneth. In this way, Kenneth would have greater opportunities to develop a healthy sense of self: Scott: Was there other gay men there, supporting Kenneth specifically? Will: Actually we had other people, other gay man but not in the apartment program. But a lot of the times like I said I tried to get Kenneth into some gay-oriented services. Scott: Like the doctor. Will: Like the doctor. We actually have him seeing a gay counsellor, Sean Smith. Because I said, "This is his issues", and because of who he [Kenneth] is you had to have some understanding and of all the sod of scenarios. Because generically they would say "Here's a psychologist in you go to see him." Scott: so the straight people would say the ...would not be sensitive to the gay issues. Will: Some of them would not. Betty [social worker] was. Betty would back us and say "I believe he needs this and this", and she would back me 100 percent. Yet, even with a bevy of gay male (and supportive straight-identified) professionals and paraprofessionals, Will still accompanied Kenneth on certain appointments. Professionals that are sensitive to gay issues are not necessarily trained or sensitive to issues around developmental disability. So, in order to "fully inform" the requisite practitioners, or stated queerly, in order to uncover Kenneth's management practices to mitigate his label of developmental disability, when the situation was critical, Will would act as almost an interpreter for Kenneth: Will: Sometimes we would go into the doctor's office with him, just to sort of pass on the information. Well, "This has happened, and we are concerned." Scott: So you almost translated it into a plain language for Kenneth? Will: for the doctor. Scott: Oh, for the doctor because it would be a mixed up story? Will: Because Kenneth would say "This has happened to", and I mean I don't to what degree Kenneth has said what has happened with other people. And sometimes I would see it as him having a trauma happening rather than having a relationship. Scott: So he would describe it as relationship and it might have been, 1: Will: It might been a trauma. Or it might have been a relationship than he might have described as trauma. Since Will understood Kenneth's "gay-is-normal-therefore-not-disabled" management system, he could provide a more sensitive and appropriate kind of care. At the same time, this strategy ultimately severed Will and Kenneth's relationship. So completely does Kenneth adhere to his strategic method—almost mantra-like—that he will absolutely not tolerate being associated with others labelled with a developmental disability. To Kenneth, such folk represent an assault not only on his "normal qualification" but more importantly on his gay status: Will: Kenneth does not want to be categorized as disabled at all. He's very hateful of that, and is to the point where he will ignore people with disabilities. He does not want to be around them. The example is, when he was living in the apartment program with the gentleman, Spencer, he [Kenneth] had actually at that point said, "I am his worker am I not?" I said, "No, you were [sic] his roommate, you guys live together in this apartment. And you guys are friends, you know, that's it. That is the end of the discussion." Well, he would act as though he was a worker. He plays that role although he doesn't have the ability to deal with it well. I mean it was a good situation because they could offset one another and it was a good situation... How I portrayed us living together I said we were roommates. It was never, I never portrayed the image that I was his caregiver or his foster parent. Yes, I am the person in charge but we're roommates all living together. We have respect for one another, we talk we do all these actions. He never related to the other guys [other people with disabilities in Will's care]. The guys, the first time that we had dinner together and he sat down and talked to me through the guys, I mean through me about the guys. Rather than leaning over and asking one of the guy's a question he would look at me and say, "Well what does Joe do?" and I would say, "Well you can ask Joe" and like I would direct him towards Joe, and Joe would answer. Scott: Do you think he was modeling what was done to him? What was shown to him? Will: Partly and also him wanting to be normal and wanted to be the person in charge. Scott: That's a big part of his story isn't it? Will: Oh, it's a very big part of the story. I mean he's so much, he wanted to portray himself as being an average person, out there, and...(pause) Kenneth had gotten really mad at me and started throwing stuff around, and he ended up screaming at the top of his lungs, "Well I want a lawyer!" Well, you know what if you want a lawyer go and get one; it's not going to help you. And supposedly one day he actually went to one, and what it and I don't know what actually transpired, but Kenneth had shown me a business card with the lawyer's credentials on it. And I said, "OK if you want some help," I mean I was offering then, he wants some help to make sense of it [his living situation] then I would go, but it never was ...Kenneth has a vocabulary that is his. And you can tell when other people are speaking because the vocabulary changes. And I will learn what is being said. And as an example when Kenneth was living with me he said, "Well I'm going to give the lawyer and fight this thing." You know and I was always "You know Kenneth what you going to fight? There's nothing here to fight." There's nothing here a lawyer will fight, you know if you want your rights, you stand up and say I want this. You know and he never really comprehended that. This is why I always sort of wondered who is speaking, because our last conversation was actually quite a bad situation... Yes, he assumed that he was my partner as in giving care to the guys. And this was actually one of his biggest upsets when he got mad at me is that his words were, his words were "You don't care about these fucking 'tards, and you're out all the time. You work all the time. You're never home blah, blah, blah." And I said, "Yes I have a busy schedule, and I lead a busy life" [but] that everything was done. My bases were all covered. It was just him being angry at what I don't know exactly. [Emphases added]. This episode ended with Kenneth stomping out of the townhouse into the complex courtyard; he continued ranting. Kenneth became so verbally and physically violent that the police were contacted, and they escorted him out of the common area. Will contacted the social worker and Kenneth was placed in another residential setting. Mitch and Kevin Mitch, who like Will, openly identifies as gay, founded and facilitates A Safe Place. As a direct caregiver, residential supervisor, and a government administrator, Mitch has supported people with developmental disabilities for many years. At the time of our interviews, Mitch had a distinguished government position, and he administered, monitored, and evaluated a range of social services for people with disabilities. For example, he was responsible for co-ordinating state-wide HIV education classes. A Safe Place is an outgrowth of these classes. Kevin attends A Safe Place, and it is clear that he regards the group as an important aspect in his recovery: Scott: So how has the group helped? Was it hearing the stories of the other men? Kevin: Well first, (pause) at first I was a little bit uncomfortable (pause) about men openly talking about their sexuality, their sexual preferences. I tend to be sort passive. But with time I began to realize I was projecting my own disgust of my own homosexuality on to them. And in the last session or two, I have been able to talk about my own sexual preferences and feel more with the group. In fact, it appears that the group is more vital to Kevin than his relationship with the able-bodied facilitator, Mitch. This is a good thing. Too often able-bodied professionals unknowingly block opportunities for people with disabilities to create unpaid ("real") friendships. Certainly, Kevin and Mitch do not share a close relationship as Will and Kenneth once did: The group has been helping [me for a] long time, but it has been taking a long time to trust people with my sexuality. (Pause) Part of the schizophrenia but is an inability to form relationships. It is; that's part of the problem. And right now I feel like I just want to develop fraternal orplatonic relationships with other gays. Perhaps, Mitch helped Kevin the most by simply allowing him into the group. As stated earlier Kevin is dually diagnosed with his mental health issues being primary: It is the case of the funding issue. So trying to meet the reality of what people might be dealing with. So probably, (pause) it was an attempt to make a group more inclusive. And cross some of the boundaries, like the artificial boundaries of an IQ level of 70, because we've had referrals from people who don't necessarily receive services as someone with disability, but received mental health services for either psychiatric issues or whatever they qualified for under the State Health Plan. Creating opportunities to talk about gay things has been enormously beneficial for Kevin. Judy and Er ic Judy, also a professional facilitator in the field of developmental disability, another "wise insider," has been helping Eric fashion a gay identity. As an outreach worker, Judy provides sex education, advocacy and counselling for "individuals with developmental disabilities, their support people and their support network," although in Eric's case, most of her support was directed at him alone. Most significantly here, Judy facilitates Smart Dating (based upon the curriculum from the Young Adult Institute from New York) a sex education and support group catering to the social-sexual needs of people with developmental disabilities. Eric has participated in two of these groups, as well as one-on-one counselling sessions with Judy. 1 The Smart Dating group had recently finished at the time of the research interviews. During the final group session, Eric performed a "coming out" to other members, which included the obligatory denouemental bliss for "being real:" As a matter of fact, this is a good story. It's got a happy ending, because I started going to Judy's group, with the People Smart course, and then of course I come here too [local AIDS organisation], and it was really good. And then on our last of class, ...and that's when I got brave, and I said OK, I'm going to say that I'm gay. So I did... It was funny, it was funny though, the day that I said that I was gay, [another participant] and I were trying to create a friendship before he even knew that I was gay. And my biggest fear was, if I tell [this participant] that I'm gay, he'll probably drop me like a hot potato, because he just seems so straight! And then to have him to tell me, tell me after, when I came out, it was just like a great big weight had gone off my shoulders. Scott: A great big weight came off your shoulders because you told him that you were gay, and he accepted you? Eric: Yes! Perhaps because Judy recognised both the courageous and vulnerable nature of Eric's coming out in her group, she responded quickly. She attempted to reframe an alternative sexual orientation performance as simply another difference along a continuum of human difference. She encouraged each member to reflect upon his/her own difference, rather than patronise or humiliate Eric for identifying as gay. At the same time, she praised his strength for coming out in a predominantly heterosexual context: / tried to make [Eric's coming out] into people talking about their experiences. Something that makes them feel different, and it was a nice opening for people to talk little bit about what it's like to live with the disability. And I think we did that a little bit in this group, so I try to make it as though [it] was an issue that we all deal with. You know, we all have our own little things, you know Eric's wasn't really different from all of us. He was being open about that experience, and how could other people relate to that based on how they were. And it's a very difficult conversation to have, and not often am I able to have that conversation, because this is a painful one. Well, what does that mean? You know, to be in school, and a little bit, (pause) we talked about it (pause) in the group—of people's experiences of being, you know [different]. Because we talked about relationships, of people connecting up with people, because people shared some experiences of how difficult it was to make friends, and how come it was so difficult, and times of being rejected. Those are hard issues. Coming out, like any aspect of identification from a queer perspective, is performative. Yet, it seems almost cruel to speak of coming out as a production in the context of people with disabilities, given the complexity of ableistic practices intertwining within homophobia, heterosexism, and heteronormativity. The implication seems to be that Eric himself (in this case) is somehow putting on a show, that he is not honest, not "being true," not "authentic." Alternatively, a queer perspective can uncover significant and substantial factors of identification—as institutional practice, not otherwise discernible. Eric's identity management strategy was described in the previous section as "to be is to be myself." In other words, there seemed to be no "obvious" signs of acting—quite unlike the case of Kenneth, for example. Eric's identity looks to be more "authentic" than Kenneth's. I did so to precisely underscore the analysis here. From queer theory, all identification is performative. In Butler's now-famous words "all gender [or identity] is a drag." Yet, as pointed out in Chapter One, drag appears more authentic the closer it approximates cultural expectations. It is this illusion of authenticity that is at stake in Eric's story. His coming out story is convincing—it even includes the emancipated outgrowth. The narrative matches the template, and this is the problem. Yet, Eric's classic re-telling of the coming-out story obscures his struggle. Eric's coming-out occurred in the context of a sex education class designed by the able-bodied for persons with developmental disabilities. Such an arrangement is problematic. Judy (and other straight-identified) people may assume that coming out is a linear and fixed process—once someone has identified himself as gay, he is gay. Especially if someone appears to be satisfied with one's identity, as Eric does, there may be little appreciation (or preparation and assistance) for the struggles beyond the walls of a sex education group. Further, coming out in the context of a sex education class for people with disabilities and being supported and affirmed may induce one to think that such affirmation is as easily obtained in gay male communities. These factors create vulnerability, and will be re-visited in more detail in the next chapter. 1 CHAPTER SIX The Making of Vulnerabilities and Choice, Power and Control Gay Men with Developmental Disabilities are People First with Disabilities: The Making of Vulnerabilities (Part 1) Key participants' identity management strategies may be described both as cause and effect of ableisitic, homophobic, heterosexist, and heternormative practices, and in certain cases, even a form of such practices. Strategies, born of able-bodied heterosexual hegemony, ultimately served to make many of the key participants vulnerable. I consciously worked against a tendency here to linger in the mysterious, to become the theoretical tourist, to exoticize the "other"—these strange and queer performances of these men with developmental disabilities. I ground against my naive leftist ideology that tempted me to abdicate my researcher/professional responsibilities—as an advocate, and as a person willing to share power. For the unfortunate reality that I discovered conducting this project was that gay performance by people with developmental disabilities is precluded by the fact that participants are people first with disabilities. Many key participants suffered innumerable abuses at the hands of the "fully"-abled, and the less-discernible hands (but in some ways more destructive) of ableistic institutional practices. Not surprisingly, these abuses infiltrated the identity strategies of the key participants. It is therefore, not possible to describe gay performance and developmental disability without talking about (re)creating vulnerability. Key participants reported being sexually abused and gay-bashed, two obvious examples of exploitation. Another form of harm included here is caregiver attempts to control and/or eradicate same-sex behaviour. Finally, all key participants found themselves in queer confines— having to prove incompetence to access disability-related services, and at the same time having to perform gay competence with little assistance in gay milieus. I term these confines the drag of competence, and the drag of competence in a sequinned world. The flip side of vulnerability is participants' attempts to direct their own lives, and so subsequently the interconnected issues of power, choice and control will be explored. Correspondingly, caregivers who support queer identification(s) for people with developmental disabilities are also subject to vulnerability, and as well, help people with disabilities challenge disabling and heterosexist norms. Therefore, the thematic structure of Chapter Six and Seven is as follows: • The making of vulnerabilities of people with developmental disabilities, • The assertion of choice, power and control of people with developmental disabilities, and correspondingly, • The making of vulnerabilities of the caregivers that support people with developmental disabilities, and in Chapter Seven • Supporting the choice, power and control of people with developmental disabilities by professionals and paraprofessionals. Residues of Sexual Abuse and Sexual Fictions Sexual abuse is perhaps the most blatant example of how key participants were exploited. Although I did not raise the issue of sexual abuse during the interviews, four key participants did so. People with developmental disabilities are often victims of sexual abuse, and frequently, repeatedly so (see Sobsey, 1994). If there is any good news, it is that each participant here had received professional support around the abuse. At the same time, usually only those who have recovered sufficiently from such abuses are able to broach the subject; it is possible that other participants had also been victims, but were not prepared to broach the topic (see Hingsburger, 1999). "Working through" abuse issues, however, does not remove their residue from current relational difficulties, and indeed practices of identity. Lawrence was sexually abused over a protracted period of time, and being labelled with a developmental disability, it seemed that he found it very difficult to dispel these harmful myths about himself: Lawrence: I first realized that I was gay, I guess it all comes down to when, OK, I was sexually abused when I was young. My foster father, I had foster parents. Then I guess of all that time, I've been, I guess I choose to be gay in my later years, like early adulthood when I was a teenager. I didn't really understand it all. I didn't... because when I was abused when I was younger it affects people in their older years. For example people who have been abuse, sometimes men just go for women and not be gay, you know. My foster father had some problems, he was a gay person. That's what was in the records and stuff, but some people can override that in their later years and say, "I'm more into women, you know that's in the past." But for me I think it had affected most of my life Scott: the sexual abuse or? Lawrence: Yes the sexual abuse. It has affected me 'cause I was having sex most with (pause) with my foster father. So I took that in later years...you know maybe I'm gay 'cause he's been. Right? Now that affected me. And I been trying to hide it by lying to friends and saying, "Oh I'm not gay, I really like women, and talking things about 'em." But in my own personal life, I choose to be gay, not because of what happened in the past, some people they may think that affects the person when they're older. Well, it didn't, I chose it my own. How are healthy expressions of self, of sexuality, of identity to be nurtured in such instances? Later, Lawrence used words with discernible traces of disabling myths and abuse histories, that "gay people may be afraid of handicapped people; they may say they were raped." The referent for "they" is unclear here. Is Lawrence referring to "handicapped people?" If so, the implication is that people with disabilities may (presumably falsely) allege they are rape victims and that is why gay people are afraid 1 of them. Gay-identified people do not want to be accused of something they did not do. Or does he mean people without disabilities, implying that "handicapped people" are sexual perpetrators, and that accounts for why gay people are apprehensive. Either interpretation is problematic, to say the least. As chronicled in Chapter Two, people with developmental disabilities are targets of tenacious societal myths (Wolfensberger, 1972)—the sexual deviant (the rapist) and the eternal child (unable to make informed choices around sex and sexuality). Gay-identified people are also often branded with similar detrimental sexuality myths. Yet, the damage does not stop there, it is quite possible that the residues of sexual abuse and the residues of these harmful myths reinforce each other for Lawrence. Indeed, these societal myths found their way into the "everyday" of identity management. Certainly, non-handicapped persons, whatever their sexual orientation, do not usually think of their sexuality as "out of control" or as "forever child-like." Thus, non-handicapped persons need not let such conceptions act as significant impediments to meeting someone, as Lawrence has. But again, the damage does not stop there. Sexual abuse by a male perpetrator further confounded sexual identification for these men. Lawrence felt that he had to try to "over-ride" being sexually abused by his foster father, so that he could "be more into women." In order to allow himself same-sex attractions, this participant had to discover for himself that same-sex attractions were not re-enactments of his abuse. This process was wrenching, and several times throughout the interview he stated that the sexual abuse "has affected my whole life." In some ways, these experiences are not unlike those for men without disabilities who have been abused. The differences are, of course, that people with disabilities not only have to carry the weight of these myths on their backs, but also often have fewer options for help. For example, two different males sexually abused Eric while he was in school. He did not tell his parents or other trusted adults. Although he has since received counselling for these incidents, he kept the abuse to himself for a long time. He was afraid that his family would not believe him. Later, when he had dealt these issues in therapy, he discussed them with his father. Eric: I was 13. And I got molested by a guy when I was 12 too. And he was pretending he was hiding somebody, and in the meantime he was molesting me. Scott: Did you ever talk to anybody about that? Eric: As a matter of fact, that coach was, that coach that was, Graham James, you know when they had that story about the hockey player, I told my dad then. And he said well 'Why didn't you tell us then?' I said you probably wouldn't have believed to me. Very unfortunately, it is not uncommon for children who are victims of sexual abuse to think that no one will believe them (Mansell, Sobsey, Wilgosh, & Zawallich, 1997; Sobsey, 1994; Wilgosh, 1993). So regrettably, this participant's predicament was not that unusual, but if a person with a disability felt that he could not turn to his parents, where could he turn for help? Some social service agencies that specialize in treating normal people who have been abused feel unequipped to handle people with developmental disabilities that have been abused—a point that will be taken up subsequently. Evan was seduced in his youth: "I did have sexual abuse actually, but it is ironic when people talk about sexual abuse because my sexual abuse actually I really enjoyed. It wasn't, it sounds funny to say that, but what I mean by that is, I participated in knowing that there was going to be sex, at a very young age but not realising that this was considered to be sexual abuse." He had pleasant recollections of the event. An adults' recollections may obfuscate a child's realities, but it is not my place as a researcher to contradict any participant. At the same time, whatever his perception of being abused does not remove its remnants from his current life and identity management practices. Being sexualised as a young child can often confuse people later in life. Confusion may occur in interpreting sex as love, and some victims may 141 become sexually compulsive or even sexually inappropriate (Mansell et. al., 1997; Sobsey, 1994; Wilgosh, 1993). This participant appeared to associate being gay almost exclusively with sexual acts. It's funny the word "coming out" because I didn't really understand that. I joke about it in that sense because I kind of find it a joke, because I don't really classify that as coming out. But in so many ways, it's like identifying that you are sexual. And I guess I came out and young age because I was sexually active at a very young age. Of course, other interpretations are possible. Since it is quite likely that I was perceived as gay, there is the possibility that Evan may have been attempting to impress me. His self-proclaimed sexual prowess may have been used as an identity management strategy during our interviews to mitigate the stigmatizing effects of his disability, especially since we were discussing his FAS diagnosis in front of his partner, Ernie. This explanation is also conceivable. The point here is not to ascertain the single and accurate meaning of how this participant's history impacted his sexual identification. Rather, the point is to elucidate the complexities involved, and to suggest that there is some "truth" in each interpretation. Gay-Bashed Whatever the theoretical nature of the interpretative "truth" of the effects of sexual abuse, the material outcomes remain, and further participants were abused in other ways. Key participants Evan, Eric, and Cai described being gay-bashed. As pointed out in Thomas's story, in "developmentally disabled" contexts because the stigma of being so labelled is severely pervasive, other identities ostensibly become moot, almost by default. In many ways communities, crowds and groups of people with developmental disabilities offer solace for reluctant gay performers. In "non-disabled" contexts, that is "community living," serious violence occurred. Evan recounts his terror: / remember I went to a Halloween costume ball and the bullies found out who I was, and I was constantly chased around the school. And, and I'd jumped over fences and I could have lost my life. Literally could [have] lost my life that evening! and I ran into a neighbour's house and I just panicked. I ran in and I called for help, and I will never forget that day. I had a fantastic outfit. It was this outrageous outfit. It was just this gauze them went on for days. It just sort of flowed and went. That was also very horrific as well. I was identified, as the, you know, I was identified as a fag. Yeah you know, "Let's get him," that kind of thing. You know it was horrendous I don't think anyone in the world [should] have to go through that! [Evan's emphases]. Not only did the supposed "straight" able-bodied communities prove to be dangerous for some participants, so too, did some of the residences in which participants lived. Sex Underneath the City Caregivers controlled participants' sexuality in direct and subtle ways, and even through means of which the caregivers themselves were unaware. When caregivers controlled the living arrangements for people with disabilities, some "straight'-forwardly exerted power over the kinds of behaviour(s) that were acceptable within the residence. Not to unproblematically conflate same-sex behaviours with queer identification, but for many key participants it was undeniable the behaviour that got them into trouble. Evidently, certain caretakers acted as though it were possible to suppress, perhaps even eradicate same-sex expressions, but did not understand the implausibility, indeed impossibility, of completely restraining the human need of sexual relation. If behaviour had ceased, only in the mind of the able-bodied director/residential attendant had it stopped. Consequently, several key participants (sometimes literally) went underground with their sexuality, and thus were made to be extremely vulnerable (Thompson, 1994). People (regardless of ability) do not have the verbal, physical or emotional wherewithal to negotiate healthy sexual contact under exceptional duress—when they must hide their sexuality. In effect, certain able-bodied caregivers set up participants to be exploited. Here is but one glaring example: Eric: Yes that's right. Before I came out here, I didn't know anybody out here, except for my friend Brett, who isn't gay. Anyway [my place of residence] had these strict rules: "Now don't bring anybody over, don't go to gay bars, don't go to various places," and things like that, and just laid out the rules. But I found that I had to go somewhere. Scott: Where did you go? Eric: Well, I went to the (pause) I sneaked off to the parks once in a while. And then I, it was happening too much. I had to (pause) I just didn't like it! Because it was getting too scary, at times, because one guy wanted money all the time, and if I didn't have money then well. And I thought I can't live like this. So then that's, Scott: So he wanted money for sex? Eric: Yes. Scott: So you didn't have money then you wouldn't have sex. Eric: Yes. Scott: Did anybody ever threaten you or beat you up? Eric: Nobody really threatened me, but there was a time though, this was in. I sneaked off into the park, and I got fed up. It was a really embarrassing thing! It got me to, well, it got so that I exposed myself. And it was so embarrassing! I didn't want to tell my [caregivers], but I ended up telling [them] everything so it was really tough. The good news is, I got off, and didn't even, I don't even have a record. That's the best thing, so I stopped going to the parks. [Emphases added]. This situation exemplifies the limited options available to people with developmental disabilities. If caregivers prohibit same-sex activities in a safe place, people may (be forced to) have sex un-safely in unsafe places. Certain participants did not need direct caregiver proscription to restrict the public representation of same-sex expression; they did it themselves. As Foucault (1980, 1984) has suggested, we learn to police ourselves, as did these participants. Communities of people with disabilities may inherently mitigate outward gay/bi identifications, although they do not bound same-sex performances; in fact, as Hingsburger (1993) has argued, such performance flourishes underground, after hours, so to speak. Lawrence secretly connected sexually with several men with developmental disabilities in his circle: Scott: And so, have you ever had any friends that are gay? Lawrence: Yeah, I...I had a friend that's gay. I see him sometimes regularly. He lives common-law with his girlfriend. Scott: Is he gay? Lawrence: That's right, he hides it from his girlfriend. 144 Scott: Oh? Lawrence: But he's lower level than I am. I've known him since '84, but he has a, I, I, I guess I was acting out by towards him like, "Why don't you be gay you know with me, and have some fun, you know" Scott: In a sexual way you mean? Or just... Lawrence: Yup, in a sexual way... 'Cause he's frustrated with his wife, I mean girlfriend sometimes and, well it's the same thing over and over an over and over and over so I find it that, that I'm pulling away from him, because I find that it's just not... Scott: The same thing, what do you mean? Lawrence: Well he just wants to come over and is always wanting sex and I don't want always want to with him, you know. Of course, other attitudes come into play, which compound caregiver dogmatism further inhibiting open same-sex identification and expression for people with disabilities. Evan describes living in a small town: That's why I moved out of [a small Northern town]. I mean there was a lot of free love and free sex. But there was no real. I couldn't really sleep with anybody. I couldn't have that, the wonderful passion that I wanted. It was always hidden it was always something like, "OK we'll get drunk and we'll fool around" and then, you know "Don't talk to me." Or you will embarrass me in front of my friends. I can't really handle that was it was I really got tired of it. [Emphases added]. There are many repercussions that result from enforced silence and participants compelled to go underground to hide their sexualities, perhaps none more heart-breaking than contracting HIV. Evan had been HIV positive for many years at the time of the interview. His HIV status further alienated him from friends and family. This, of course, compounded the already precarious nature of his identity: / mean that took me a long time to tell people that [I] was HIV-positive because it was such a taboo thing to be saying. Like you're a walking disease, a lot of people just looked at me. I even had some friends that wouldn't even let me drink out of their glass. Because there was general ignorance towards HIV and I had to go in and I'm going to sit down and I'm going to teach you about HIV and AIDS. ...[long pause] and I kept to myself for quite a few years. And I didn't go on medication for, for quite a few years because I just didn't know. I kind of wanted to leave it behind. You know, I'm HIV-positive but leave me alone I'll deal with it, that kind of an attitude. Then I started realising if I continue partying, (pause), that I was just in denial. I had no idea what denial was. "I'm not in denial," you know "What's denial?" "I'm doing what I want," but in actual psychology terms it was denial. I was in denial with it. I was just going over the surface, and going on about my day and doing just the best that I could. 145 In short, histories of sexual and physical abuse, caregiver intolerance, and mandatory concealing same-sex conduct all conspired to heighten key participants' vulnerability. Plainly, material, emotional and physical traumas are the inevitable result. However, there are less-obvious outcomes: traces of vulnerability that permeate every interaction between labelled and unlabelled people. Vulnerability, as expressed through identity management strategies, serves to constantly undermine participants' autonomy. These identity "handicaps" are the focus of the next section. The Drag of Competence (Part A), and The Drag of Competence in a Sequinned World (Part B) To be labelled developmental^ disabled is to be vulnerable—regardless of level of intellectual impairment—for it is the act of labelling that is at stake. Non-labelled people both create and bestow a plethora of disability diagnoses. The self-referral selection process as well as the use of in-depth one-to-one interviews for this study served to cull a certain kind of labelled participants—in the words of special education, "high-functioning" individuals with disabilities. Key participants considered to be (relatively) culturally competent quite seriously felt the drag of their capabilities, weighing them down. They felt abandoned, left to fend for themselves in the world. Of course what is pulling participants down is not their intellect, but able-bodied conceptions of what it means to have a developmental disability—the drag of disability. Participants could present neither as "too competent" nor as "too incompetent," but just "competent enough" (to be disabled)—what an order! Thomas explains the precariousness of this predicament: Ever since I left school I have been struggling and surviving on my own, which everybody said I have been doing remarkably well for [a] person with the disability, surviving on my own, you know, doing my own stuff. Going places where, like I took three trips on my own to different countries. I went to Australia two years ago to be different. I had been to England twice to see my aunt. And did this on my own, spending my own money. I paid my own cash, and I do my own housework, and of course everybody says if you can do that you're not really disabled are you? [Emphases added]. Presenting oneself as "just disabled enough" is a job at which participants had to excel. Access to many support services depended upon such a routine. In that regard, Thomas claimed that he was discriminated against "because the government funding has been cut. As the government funding has been cut down, the criteria has [sic] been cut down. You have to be severely retarded before you get help." Eric concurs; consider the endless and circuitous able-bodied irony, which forces him to cycle alternatively through performances of capability and ineptitude. Eric has been given many labels, "mild mental handicap," "slow-learner," "cerebral palsy," and "generalized anxiety disorder." Like many persons with developmental disabilities, Eric has suffered several (unavoidable) consequences from being so labelled, many of which have been chronicled here. So, in an attempt to get help to ameliorate some of these effects, Eric requested a social worker. He was denied. Apparently, he performed too competently. So, Eric had to advocate for social services for himself, since "nobody believed that [I] had a disability, and I found that I couldn't get a social worker because I couldn't meet the requirements." Ironic, how Eric had to meet the requirements "to be disabled," when he requested neither the label nor its impacts. This drag of competence, this queerly conditional qualification of one's intellect, heightened participants' vulnerability in LGB settings. In these communities, often participants passed by being extremely submissive, so as not to be challenged or noticed. Thomas described this as "a very scary experience. It was like having somebody else controlling the car, and they could make all the decisions. And I thought wow, this is a totally different experience." Likewise, "totally different" definitely describes Cal's encounters at a local gay bar. Cal was bewildered. He knew how to perform the autistic—even (quite literally) the severe autistic in some pretty unusual locales. Conversely, gay bars were particularly hostile environments for Cal ; he was harassed, and unable to have even perfunctory opportunities to learn gay drag: Cal: When I go to gay bars sometimes I find people laughing at me or coming [up to me] and asking me questions and then going away and teasing me, and I wonder why'd they do that? What did I do to them? Scott: mm... Cal: I don't know what kind of game they do. I find there's a lot of people that play mind games with me. And I do miss a lot of things, partly due to the fact that I have a mental disability. Scott: What do you mean you miss, what do you miss? Cal: They, people play jokes with me or they do things like they come and ask me questions. And they come around me and one guy was snapping his fingers like this [makes repeated snapping finger gestures back and forth in front of his face] and then going away, and I think he was just trying to test to see if I was on drugs, you know. There were other "tests." Eric had to learn the often-callous conventions of after-sex protocol. So, not only did caregiver antipathy force Eric to hide his sexuality, to have sex in unsafe places, he was completely unprepared for one of his sex partner's apparent callousness: Well, I met a fellow, it is kind of embarrassing to say, I met a person in the washroom. You tap your foot, you know, and one guy responded. And but nothing happened, so I got out. Then he got out. And I thought, "Oh it was love at first sight." And I was just so attracted him and everything. And he was easy to talk to and everything. And then we were just having a short conversation, and he said, "Well I'm going to be heading home soon." And, and I said, "Do you want some company?" (laughs). I never thought that I'd be able to say that, I never thought that I would be brave enough to say that and I sure was. So I went to his place and we got intimate. And then he said, "Well, you can come back any time." And so I took him literally, and I came back, and had a hard time getting a hold of him. And I just thought, "Oh no!, I've got this problem again," because I get so infatuated and with somebody, and so that's when I went to Matthew (a gay social worker). And Matthew had said well, and that's when I realised, and Matthew said, "Oh they all say that, comeback any time, and they don't mean it. "And so I thought I can be so naive at times in how to properly meet people and everything...Um (pause) I guess I'm just naive at taking people's words. Yep, and I believe when somebody says something that they should (long pause).[Emphases added]. 148 Although Eric yearned to meet people "properly," he was bound to anonymous or near-anonymous encounters in which propriety takes on a whole different meaning. Lawrence too, is well aware of the prejudice in some gay surroundings. He describes the potential impact of a stigma of a developmental disability: Lawrence: Like say, for example, I goto a gay bar and I know the "etiquette" in getting a guy, like winking or, you know. Scott: Right. Lawrence: I can do all that, 'cause I know that's what I want. But if a person, like myself, wants to be gay or is trying to do the same thing I'm doing. He will probably be knocked down. It's probably has to do with intellect. Like is he intelligent enough to handle ah...the word I'm looking for...how would the other guy feel about it? At the same time, Lawrence earnestly and almost insistently asserted his desire to connect with gay-identified men. As pointed out, he regarded me as a gay ambassador, and was hoping that I would inaugurate him into gay communities. Yet, at the same time, he was concerned that he "was off-topics and frustrated." Lawrence wanted me "to have a good thesis." Within these contradictions—asserting one's needs vs. pleasing the interviewer—lies the able-bodied fabrication of (disabled) competence. Ultimately, it is able-bodied norms that everyone is measured by, and so people who are able-bodied are always-already competent. They need not qualify their need for same-sex connection (or any other need) in able-bodied terms. Lawrence, labelled as a person with a developmental disability, had the tricky and impossible task of attempting to stand up for himself, his needs, his wants, his desires on the one hand, and doing so in a way that does not alienate (me) the (potential) benefactor, on the other hand. Able-bodied persons are almost always the unspoken benefactors. They bestow competence; therefore, they control competence. Since gay benefactors can be "fickle," participants needed to develop ways of coping, for gay validation was by no means guaranteed. Evan spoke to the necessity— and his flamboyant way of fulfilling it—of guarding himself from such instabilities: / mean I can out queen anybody! Just give me a pair of heels and I'm off, I'm just a little Miss Soto. There she goes, and thank God I have that quality because it just helps to protect me like if you're trying to give me attitude and you're trying to, it's like don't do it. I'm very intelligent; I'm very smart and I'll just walk right over you honey. "Just look at those tracks all over your face! Just look at your mascara honey!" (laughs and then pauses) I don't like that aspect, I don't like it. [Emphases added]. The drag of competence, rather than acting as a protective cloak, in many ways acted as a wrap—a series of acts of constriction. Each variation contributed to participants' precarious character. Given the ways in which participants' identities were bordered, contained and controlled, it is not surprising that the complementary and interrelated themes of choice, power and control emerged from the data. Cho ice , Power and Control (Part 1) As ableism, homophobia, heterosexism, and heteronormativity conspired to make vulnerable the key participants, so did the participants rally against these effects. Participants understood and practiced acts of choice, power, and control in significant and revolutionary ways. Of course, to appreciate the subversive nature of such acts, able-bodied constructions of emancipation and the like must be discarded. Lawrence and Cal exercised choice within their sexual identifications in interesting and paradoxical ways. At the heart of their identity appeal lies their question: who controls our representation? Kenneth very much attempts to direct his representation, and as such requires "authentic" community living to do so. Self "Acceptance" A queer analysis of gay identification completely eradicates any (linear) notion of "coming out" (Sedgwick 1990, 1993). The mythical and popular "coming out" chronology reads something like: gay-repudiation, self-repudiation, struggle-struggle-struggle, self-acceptance, coming out, emancipated card-carrying gay person. Of course, coming out never ends; nor do acts of gay identification. However, what appears to be a logical conclusion for able-bodied LGB-identified people, namely conferral and legitimated participation within LGB communities, proved elusive for key participants. A self-accepting gay performance is distinct from group acceptance, playing gay in gay contexts. The transition from one to the other appears logical, but not for these participants, as elucidated in the sub-theme the drag of competence. Having said that, being able to play the "self-accepting homosexual" is, in itself, a meaningful feat for key participants. For example, given Lawrence's history of sexual abuse, it is not surprising that he defines gay identification as a right, as a choice. In addition, Lawrence spent much of his life within the confines of the social service system; many community living agencies circumscribed his life choices in general and sexuality choices most especially. Therefore, Lawrence was quite serious, adamant, and vocal about his right to choose with whom he had sex, and his right to identify as gay. Simultaneously, however, Lawrence felt stigmatized for acting the liberated and self-declared "gay." He talked of LGB prejudice within his communities of people with developmental disabilities and the larger society. Conceivably then, as a way of affirming both his choice and right to be gay on the on the hand, and the healthiness of that choice on the other, Lawrence used language that evoked those sentiments simultaneously: Scott: So you said at one point, at one time you said, "I chose to be gay," you used the word choice. Do you think it is a choice? Lawrence: (long pause). If you feel you have the choice (pause). I (pause) now (pause), I have the choice to be what I want, and if I choose to be gay, I am, because I feel more comfortable, because I'm more comfortable, because I've been watching videotapes of gay acts and sex and all that which is fine. And I have been on the bulletin boards, there are gay BBS's out there, which sometimes I interconnect, just to see if I can meet. [Emphases added]. The significance of Lawrence's conception of "choice" cannot be understated. Choice, like any aspect of identification, is an able-bodied construction. The quandary in the classic (able-bodied) coming-out narrative is not whether one can come out; it is whether one chooses to come out. For persons so able-bodied, choices among sexual drags are always-already present—whether or not they are exercised; for people with developmental disabilities, this is not the case. Developmental disability, as has been shown, limits sexualities—disables them, so to speak. So, for Lawrence to come to realize that he too, in fact has a choice of sexual drag is quite eventful: It's just I feel I have a learning disability I don't deny that, and I feel that shouldn't be, shouldn't interfere [with] what my preference is. If I choose to be a doctor, for example, I will go and learn and be a doctor, right? ...I told [my social worker] my intentions that I am a gay person and, you know I was wondering if there were any support groups for me out there or, you know I've, I've had interests too, I mean I'm a man myself. I've had fantasies too. [Emphases added]. Lawrence may be naively over-confident here, essentially claiming a gay role can be chosen and learned by anyone, which sadly contradicts his own experience and his own belief. Nevertheless, given his particular histories, his point of view is a breath of fresh air. I'm Gav/Bi When / Say So Cai is similarly (and necessarily) absorbed in ideas of choice and control regarding his sexual identification, although in manners quite unlike Lawrence. Lawrence affirmed his right to choose to play gay; Cai affirmed his right not to choose to play gay. At the beginning of the interviews, Cai proudly declared that he is bisexual, an inevitable outcome of being diagnosed with HFA/Asperger's Syndrome, as stated. As long as Cai understood his sexual identification to be an artefact of being super-intelligent, of being Aspergian, he was content with his "destiny." At other times it appeared that Cai resented the identification. When others imposed the terms "gay" or "bi", when he was so-labelled without his consent, and when such identifications occurred in able-bodied contexts, he became vexed, confused, and confrontational. On the playground, Cal was disparagingly and continually called a "homo," a "fag" a "queer." In some sense, Cal recollects that he interpreted such taunting to mean that he was gay, that people must see in him his "gayness." In this way of understanding, his tormentors, Cal surmised, quite literally formed his sexual identification: / tend to be a little effeminate. Sometimes, I can be effeminate; I wear bracelets like these that was unacceptable in some schools. When, in fact, I can do what the fuck I want, you know? I don't need somebody telling me how to dress... You know, in fact a lot of the people that mistreated me and said that I was gay. When I first came to [urban city] I ended up in the hospital after I started school, because I had been picked on. I had a whole bunch of stress and I just couldn't take it anymore. Further, Cal claimed that he had little opportunity to engage in relationships with girls, and later women. Even when he did associate with women, apparently these relationships were seen through Cal's apparent gay-identification: Nobody even gave me the chance to have a girlfriend, and anytime I tried to associate with girls, it was some girl who was somebody else's girlfriend, and she started coming on to me, and we were good friends. And suddenly I know her boyfriend calls me and says, "What are you doing with my woman?" And then she says well, I was gay anyway. So she just wanted to see if I was gay or not. That's why she came up to me. In fact, even acquaintances, Cal suggested, assumed that he was playing "gay": My mother knows that a lot of people thought I was gay, and even sometimes when she introduced me to people from her work. She's heard them make comments about [me] that I was gay. It seemed that everyone (everyone being able-bodied, heterosexually-identified people) was certain that Cal was performing gay, except Cal. Perhaps more than any other participant, Cal wondered if he were gay, and even deeper what gay is or means: You know, and, so we build a society based on so many labels that even today when I see people that are gay, I wonder. A lot of people tell me it's not a choice, it's the way they are. Just like somebody's born Asian, that's the way they are; they can't. They don't choose to be Asian. But um, I often wonder if being homosexual for me is, is a choice. I can't determine if that's the way I am. [Cal's emphases]. Indeed, from a queer perspective, there is no certainty, no absolute determination of gay-identification for anyone. So part of Cal's quandary in attempting to ascertain if he 153 is "authentically gay" is that such genuineness does not exist. "Being gay" is simply learning a set of (somewhat) predictable repetitive signifying representations. "I guess for me gay is almost more of a learned behaviour than, than what I really am. That's why I can't really determine, don't know if I am gay or not, because everything around me is a learned behaviour." The issue, of course, for Cai is compounded by the fact that he is not in control of these representations, which he resents. Others signify him through the gay category, quite independently of his wishes. Home. Sweet Homo(Sexuality) Unlike Cai , Kenneth was much more meticulous about his representation; every gay signifier was carefully selected. To reiterate, to Kenneth gay means not disabled. Disability implies dependence; therefore, a most crucial signifier for Kenneth was his own place. Kenneth needed to be in control of his own living situation in order to play gay. Most evidently, "a room of one's one" permits Kenneth to invite and entertain potential same-sex partners, which is not necessarily possible when others are in control of your living situation, as has been shown. It was certainly not possible while Kenneth was living with his foster parents. Consequently, throughout our interviews, Kenneth mentioned his apartment. "Yeah. Then I, I move out. Yeah, I, I take a, a big step. I move [out] on my own actually this a (pause), I get my place my own, yeah. It was a lot of work." Now, Kenneth is literally the gatekeeper of whom he allows in and out of his life. From an identity management standpoint, whom he chooses to bar from his life, namely people with developmental disabilities, is just as telling as whom he chooses to let in. An apartment is not only a gay signifier, but also a strategy for avoiding others with disabilities. Gay validation would not be possible, Kenneth believes, if he were living among people with developmental disabilities. Throughout most of his adult life, he has been surrounded by gay-identified male caregivers that looked after various people with developmental disabilities. "To be gay" means that one can associate with people with disabilities only in the context of care-giving—certainly not living with "them," as one of "them." To cohabitate with people with developmental disabilities is to compromise one's independence, to nullify gay possibilities. Kenneth described this as "moving on:" Kenneth: Do anything you want actually, on your, on your own. Scott: Um, um, (pause) So do you know other people with disabilities? Kenneth: Not think so ah...I am the only one actually I believe so. Scott: Would you be interested in meeting other people with disabilities that are gay? Or, or not really. Kenneth: Not really I likes I likes stay right now you know, just keep working keep you know move on whatever, you know. Scott: What do you mean move on? Kenneth: Ah, do anything you want actually on your on your own. Go places you know. To summarize, the production and interruption of vulnerabilities were central tensions within key participants' lives. Caregivers knowingly (re)produced relations of ruling, which demanded participant action to ameliorate or attempt to interrupt these regimes. The reach and impact of these regulatory regimes, homophobia, heterosexism, and heteronormativity are considerable; their power is felt by anyone attempting to arrest them. Not only must "wise" others also combat these institutional practices, but in attempting to do so, they may, in fact, re-inscribe such notions. These are the sub-themes of the next section, the making of care-giver vulnerabilities, and the (re)inscription of homophobia, heterosexism, and heteronormativity into the helping professions. 1 The Making of Vulnerabilities (Part 2) As detailed, many of the supporting professionals interviewed openly identified as queer; this is significant. Professionals, who must themselves struggle through institutional regulatory sexual regimes, are more aware of how they operate, and can thus attempt to do battle on behalf of others. At the same time, LGB self-identification as an able-bodied person involves quite a distinct stratagem than the artifice required to challenge the norm on behalf of others and in a professional capacity. Such work sets up these professionals/ paraprofessionals to be exploited in different, and perhaps unexpected ways. At the same time, sympathetic colleagues without such queer designation(s) are at a distinct disadvantage in the provision of care to such folks. All in the "Other" Family Ervelles (1996) maintains that direct caregivers, those who do the most vital and sustainable work for people with developmental disabilities, are frequently those who are most vulnerable; such is the case for Will. Since Kenneth lived with Will under a proprietary care arrangement; Will was responsible for co-ordinating and implementing Kenneth's Personal Service Plan. In short, Will was accountable for Kenneth's overall health and well-being, while in his care. Among other things, this included documented action plans for Kenneth's health care, nutrition, and recreation/ leisure activities. Will's proprietary care contract was administered and monitored by liaison social workers from the provincial Ministry for Children and Families through the Services to People with Mental Handicaps branch. Despite these rather official and cumbersome administrative details, it was in the everyday that Will experienced the most challenge and strain in caring for Kenneth. As revealed, Kenneth's identity management strategy, gay-is-not-disabled, is completely at odds with being cared for. Since Will performs the open-gay, Kenneth 156 sees his relationship with Will as an opportunity for gay-conferral, for gay-legitimation, not disability entrenchment. Consequently, Will had to keep reinforcing the relational boundaries, the prescribed roles, to Kenneth. Despite these reminders, Will declared that "there where a lot of times where he [Kenneth] would see me in this role [a gay ambassador or benefactor], and he would see me. I don't, I don't think he has ever assumed that we were partners, but he assumed that we were more than we ever were. I know that." Will needed to be most clear about his professional role to Kenneth when they met happen-stance in gay bars. These were challenging times for Will: It is a very difficult and hard line to walk. And I sort of indicated a couple of times there, it sort of depends a lot on the situation. If I was aware of certain things that were happening I would definitely tell him, "You know this is my time." And had no problem with that, because one of the things, especially with seeing him at the bar lots of times, I wouldn't ignore him, but I would go over to him acknowledge him. And then I would say, "It's my time and we will talk later." I would give that definite break, and also I would remove myself from that situation. Say for example, he was standing by one of the bars I might go to the pool table so I was fair distance away. So there is a separation. Or I would say you know, "This is a private conversation" [Emphases added]. Of course, these are precisely the times that Kenneth wanted to associate with Will the most. To Kenneth, Will represented the normal-gay. Kenneth thought Will had the power to publicly knight him gay. Will explains: So, I mean I would see him [Kenneth] out in the gay community interacting with individuals, but I mean I was on my own time. I wanted that anonymity, shall we say. Kenneth would come over and then he would stand beside me. And as I found out he actually tried to hit on a lot of my friends, and there was animosity between my friends and him. And at times, they wouldn't understand where he was coming from, because they were having problems understanding his whole life and the whole pattern. He would present as being this gay individual, [but] he would come across and say some really inaccurate things... They will not, some of my friends have actually requested that if we are there, they do not want to talk to him, and understandably. Like I said he has tried to hit on them and if it doesn't work out his way, he gets quite upset. And then he gets ranting and then he gets raving! [Emphases added]. So, Will was vulnerable, not only because of how his professional relationship with Kenneth could be (mis)perceived in public, as has happened to other LGB caregivers, but also because Kenneth's behaviour had the potential to seriously compromise some of Will's friendships. Friendships provide a vital component of a support system for direct caregivers. Mitch held a prominent position within government for services to people with developmental disabilities. He did not work as directly with people as did Will; however, Mitch did establish and co-ordinate A Safe Place, which Kevin attended. Mitch was not beleaguered for directly supporting Kevin and his gay-identification, but he was for creating of A Safe Place: There was this woman who was working with [pause] and she had always been nice to me and I had always known to she had extremely strong values. Several times you know, beyond the times that I told her I was gay and in a relationship, she would make a comment about a single woman in the office [who] would be wonderful for me, which I would find kind of offensive. ...And we were sort of skirting each other as staff. And when she heard about this group I was doing, I was really nervous. I was really concerned she was going to have some negative attitudes. [Emphases added]. Mitch's co-worker would speak condescendingly to him about his group. She would say, Things like, you know, "I hope you're teaching them to be safe." And sometimes I know these people are coming from a position that is not necessarily pro-gay at all. People who I know that identify themselves as Christians could think homosexuality is wrong. ...[So], I've encountered it [homophobia, herterosexism, heteronormativity] in my own work, [although it's not] the worst I've encountered. I can say that I've encountered a huge amount of negativity [but] I'm pretty well regarded in my office. People know that I am knowledgeable, and know that I can back up what I am saying, and read the rules or regulations that require them not to do that. Professional LGB caregivers typically have cultivated well-developed support systems to aid in combating homophobia, heterosexism, and heteronormativity compared to people with disabilities, but that does not mean that caregivers are unassailably untouched by such effects. Indeed, they are not! Perhaps the most devastating effect from the standpoint of people with disabilities is that such institutional practices inevitably impact the act of care giving. Mitch is not completely open about A Safe Place. He avoids the terms "gay" and "bi" and uses more neutral, less descriptive 1 terms such as "healthy sexuality" for funding purposes. A Safe Place is not publicly advertised among the community of professionals; referral occurs through word-of-mouth. Although not completely analogous situations, there are institutional practices at work, paralleling Kevin learning to hide—almost eradicate—gay performance, and Mitch needing to obscure A Safe Place. Jenn did not directly support any of the key participants, but she very well could have done so indirectly. As a sexual health educator, Jenn presented healthy sexuality workshops to crowds of parents, caregivers, and special educators throughout the province. Jenn identifies as bisexual, and experienced now-familiar strain of attempting to support queer performance of persons with developmental disabilities, as a queer performer. Periodically during her workshops, people dehumanized LGB possibilities. Challenging such comments was always a personal struggle: / mean when you're, when you're about to go to 40 parents in the gym; some are talking about stuff. And a parent says, "You know my kid may have masturbated in public but at least they are not homosexual." And everybody there goes "Ha, ha, ha;" they laugh. And then you realise that, I mean that was very intimidating. I mean I really struggled with how much I didn't want to let it go, but at the same time I have a personal fear of everything from—is this going to give my agency bad name if I take this up? Am I gonna? You know, am I going to be safe walking to my car at the end of the night? Like, because thinking I might say something about this, are they immediately going to jump to she's gay? Which as I said it never, never really happened but there was always the fear. (Pause) Particularly when you're dealing with people who were just so smug in the fact, you know, "Well of course is it's wrong to be gay." You know? I struggled with that. So I would say something like, "If your child was gay I'm sure you would deal with that just as well as you're dealing with this now." And if there was fall-out from that, I never pushed it anymore because I just did not want to. And I certainly never said: "Well I'm bisexual is that a problem for you?" It probably wouldn't be the most effective way to deal with it anyway. But the reason I stayed away from doing that was of this fear, this personal fear. [Jenn's emphases]. Will and Mitch publicly identify as gay; Jenn as bisexual; all three support people with developmental disabilities who attempt to perform "gay." Hence, Will, Mitch, and Jenn are vulnerable, which impacts the accommodation of care. Caregivers who do not 1 specifically support gay-identified people with disabilities, and who do not publicly declare their own sexual identification, are less vulnerable, so describes Judy. Although Judy reported no complications supporting key participants Eric and Thomas in her groups, she has most certainly encountered difficulties in the past. Judy discovered that even connecting a gay-identified caregiver with a gay-identified client, implicated herself within the hegemony of LGB and disability myths, and left her vulnerable: Well, a number of years ago, I was involved with young man with a significant disability. He, he didn't really use words to communicate. He writes things down, he doesn't use a (pause), he is not a verbal communicator. He was a gay man, and I worked with connecting him up to gay support worker, who was gay, but their relationship was not sexual, obviously. It was to do things together, and to connect up in the community, because exactly what you are saying, it is not sexuality. [It] is a way of being, and to have that be OK, and to get some support for who he was. And coincidentally, that same support worker was doing a men's sexuality group with me. And the man [with a disability] was a part of that group as well. And it was, it became a little bit of the incident, actually, because the man with disabilities started to say some things that he learned in the group. This is not unusual, but because he was saying the support worker, who was gay, and he talked about it with other support [workers], with other staff people, there was a lot of misunderstanding— about what this young man was saying. [Meaning that the client with a disability was saying or implying that he was having sex with the gay male caregiver]. That there was the (long thoughtful pause) and I, I had to write this long letter saying that's, that's not what's going on. There's nothing sexual, he said these, these things because this was, there was this group going on and it was not unusual for people to talk to do with you learn in the group. And he ended up, he didn't continue coming to the sexuality group, because it was too dangerous for the support worker. Because I didn't want any, nor did he, any kind of allegations that were going on there, they were unfounded completely! There was that. I believe that [the allegation] was picked up, because of people's misunderstandings about that issue. And the fact that that even happened, that there was a contract with the Ministry for the man who is identified as being gay, to be a support worker for a man who has developmental disability. That was a major thing for that to happen, and it has gone by the boards. It is not happening anymore. And it was never clearly stated, why it stopped, but it just didn't; it wasn't accepted [Emphases added]. Clearly, Judy, her colleague, and the man with a disability were all jarred by this situation. The effects do not end there. Although I did not ask Judy, the question remains: What is to be expected of her when the next person with a significant disability desires a gay identification? How this affected her support for Thomas and Eric? 160 Smart Dating is Straight Dating Apparently, Judy's support for Thomas and Eric remains as resolute as it was for her non-verbal client. Thomas and Eric attended Smart Dating. Judy provided an open and non-judgmental forum for Thomas, Eric, and others to explore safely the issues of dating, relationships, and sexuality. Through role-modelling, positive scripting and messaging, exercises for esteem building, and group cohesion, the group is helpful in combating common sexually disabling myths. "We do always come from the perspective as I was saying, that people do have the right to be sexual." These are the hallmarks of her programs' efficacy, at least according to Thomas and Eric. Judy is responsive and adaptable. Group agendas are organic; topics are derived from the participants themselves. The spectrum of intellectual impairment and need can be vast within a group; however, Judy is flexible in other ways as well. She maintains a library of "audio-visual material, because it is helpful to have a visual presentation and little role-play things, something to base discussions on." Participants may require considerable detailed and concrete descriptions. Her involvement may vary then, from highly structured, almost autocratic to loosely arranged, more democratic. Issues may vary from basic hygiene skills to complex social rules and cues around dating and relationships. Regardless of the curricula or its delivery, every group has the same ground rules: "respect people, [and] what people have to say, only one person talks at a time, and confidentiality of things that are said in group." So in these ways, Judy formats her groups to work actively against ableistic practices, respect for participants' autonomy is her overriding priority. Judy is sensitive to the many manifestations of ableism. Although Judy earnestly purports to value and support homosexual and heterosexual relationships (and identifications) equally, in practice she does not. Homophobic, heterosexist, and heteronormative practices may 1 be undetected by someone unfamiliar with LGB issues, and can therefore unknowingly infiltrate ameliorative efforts. This, I argue, is the case for Judy. / always come from the perspective in the groups that I do on relationships and sexuality issues, that we're looking at relationship guidelines, and it has nothing to do with gender between two people, and it has nothing to do with that...and it just doesn't matter your gender issues, because we have dealt with the wide spectrum of issues, of sexuality issues. Gender (performances) are not at stake, rather what is at issue are the principles of mutuality, consent, legality, and respect. From the perspective of participants with same-sex desires, gender drag does, of course, matter. In fact, for Thomas and Eric, it is the matter. Recall Eric's coming out piece during Smart Dating. Reportedly, Judy effectively seized this moment as an opening for each member to explore what it is like living with a disability, the "hard issues." This is the mark of a skilled and seasoned professional— to be able to deal compassionately and promptly with potentially contentious yet substantial issues as they arise in a support group setting. At the same time, exactly which matters arise in a given milieu is at least partly a function of what (and how) a facilitator opens up as conversational possibilities. In other words, allowing an entire agenda to flow from the group has consequences. On the one hand, in order to teach people to be autonomous, to make "smart" choices, it is imperative that a group operates in a way that reflects those principles. An organic plan encourages active and meaningful participation. Group counsellors for people with disabilities must "walk the talk." On the other hand, it is not as if there are no program constraints. The obvious and compelling tensions within any programmatic endeavours for LGB possibilities are the (unspoken), but (often-overwhelming) heterosexual contexts. Homophobic, heterosexist, and heteronormative practices are always (and already) at work; therefore, interventions are needed to interrupt them. The discursive effects of such practices will not ameliorate themselves because we momentarily affirm or posit the inconsequentiality of gender in relationships among people with developmental disabilities. Athanases (1996) illustrated one way of interrupting these (hetero)normative practices in a high school literature class. Differences were explored across a continuum—race, religious affiliation, ability, gender, and sexual orientation—via carefully selected texts. The intent was to show students how a variety of "different" people become victims of discrimination, and thereby provide students the opportunity to empathise with (other) people. Stated more theoretically, the interrelated machinations of normalizing practices were exposed; racism, sexism, ableism, and heterosexism are all strategically related within the normal as their common impetus. When students began to understand that prejudice and hatred toward LGB performance is significantly and inextricably implicated in the prejudice and hatred of women, people of colour, people with disabilities, etc., then it was possible for attitudes to change. Of course, coming to that understanding takes time. Some professionals do not even understand this. For group facilitators, then, it is necessary but not nearly enough, to model respect for LGB performance in order to create supportive environments for everyone. Especially in sex education/support groups designed for people with developmental disabilities, action is required. It is not reasonable for the ubiquitous wall of heterosexism to be dismantled by one self-identified gay person, namely Eric. Nor does it seem probable, that such groups are particularly inviting places for other sexual identifications. Smart Dating is straight dating. In very real ways, Smart Dating is a safe environment only for heterosexual expression; other identifications and desires are, as 1 always, suspect. Consider how Eric has been the only person to "come out" in one of Judy's groups: Scott: I was wondering on, how, how [looking at Judy] like is that unusual, somebody coming out in one of your groups? Judy: It is, it was. It was very courageous of you [looking at Eric]. Yes. Scott: So in your career, how many times have you seen that? Was Eric the first person? Judy: Yes, yes Eric was the first person. Eric: Wow! [laughs] That's good, yeah. Judy compliments Eric on his bravery, although it appears she fails to appreciate the significance or implication of why he has been the only person ever to disclose his same-sex desires in her groups. By highlighting the effects of homophobia, heterosexism, and heteronormativity in a particular support group for people with developmental disabilities, there may be a (logical) tendency to locate their cause within an individual—namely the facilitator, especially here since aspects of Judy's practice have been targeted. For at least a couple of reasons, it is important to continue to underscore the fact that these institutional practices, these relations of ruling, are "bigger than us all." In order to arrest these practices, we need to be able to work together—theorists, researchers and practitioners. It is not helpful to locate the effects of such practices (only) within others, since future co-operation between persons may be hindered. A significant place from which to begin to interrupt these normalizing practices is to begin to recognise our own implication(s) within them. Safer (Homo)Sexualities To reiterate, not to recognize the differences in gay identification by able-bodied vs. people with disabilities, is to be implicated in ableistic practices. Failure to appreciate these discrepancies is to (re)inscribe the normal-gay, and this has consequences. 1 People with disabilities fashion their identities in innumerable ways. Kenneth acts as though a gay identification nullifies any effects of an imputed label of FAS; thus, he identifies as gay in most all situations he is in. At the same time, Kenneth tends to participate (albeit peripherally) in gay-friendly environments. Similarly, Eric and Evan (re)shape gay identifications in most contexts. Not coincidentally, these participants have suffered the effects of such public (re)significations. As pointed out, Evan has been gay-bashed; Eric has been accosted. Alternatively, Lawrence is more "closeted"; he performs gay in gay contexts only, and non-identificatory acts in communities of people with disabilities. Perhaps not by fluke then, Lawrence has not been gay-bashed. Public acts of gay identification have the potential to put anyone at risk. Although this statement may seem to be obvious and dogmatically axiomatic, it is not so for everyone. Mitch supported Kevin in A Safe Place, and although Kevin was aware of the precariousness of gay signification (indeed profoundly so), another group member was clearly not: In my group I had someone who is living a relatively sheltered life. [He] was living in group homes and he was quite shocked that there might be people that would absolutely hate him because he was gay. He knew that people treated him differently because he was disabled because he has encountered that repeatedly, but he was pretty shocked when he started realising that people might perceive him as gay and that might be a very dangerous thing [Emphases added]. Living in a group home can become all-consuming; it can take over one's life. Such appropriation contributes to residents' vulnerability by not allowing opportunities to develop necessary coping skills—"the dignity of risk." In addition, disability prejudice obfuscates all others. Likely, residential staff may see "only" a person with a developmental disability, and no other acts of signification. At the risk of over-simplification, people with developmental disabilities do not easily generalize skills across environments. Consequently, there is need for transitional planning between settings, and even between current and future settings (see, for example, Tough & Hingsburger, 1997). Further, as discussed in Chapter One, people with disabilities often have poorly developed social skills and networks. Participants mastered social skills in the context of professional intervention, supervision and validation—skills that do not effortlessly transfer to other milieus. Stated more queerly, gay identification within support groups is vastly different than such identification within (ableisitc) LGB communities. Legitimate participation in A Safe Place in no way guarantees such a position in the everyday. To assume so can be risky. Mitch's participant learned about LGB prejudice in A Safe Place. The larger question is: Does learning about prejudice in a support group allow people to effectively face and challenge those prejudices in the "real" world? With/ln/Visibilitv Well, of course not. The hetero-normal is so amorphously and in/visibly entrenched in the everyday that "even" able-bodied allies for people with developmental disabilities often fail to disrupt it. Further, attempts to disrupt heteronormative practices often result in more expansive heterosexist entrenchments. Helping professionals (and researchers) can actually put people at risk; the complexities of being a "wise" caregiver can now be fully appreciated. For people with developmental disabilities, there are dangers associated with performative concealment and demonstration. To support any queer act of identification or dis-identification may enervate people with disabilities. Mitch supported Kevin largely within A Safe Place; similarly, Judy supported Thomas and Eric within Smart Dating. At the same time, Judy and Mitch have worked extensively within communities, outside of these groups, serving "individuals with developmental disabilities, [and] their support people and their support network." Judy vividly recalls attempts to make visible one of her client's wishes to identify as gay: Well, I was just thinking of this guy that I knew in [local town]. I tried to make some connections for him and to be open in the gay community about what his needs were, and boy did I have some doors slammed in my face! That you know, he had to be watched when he was going around the schoolyard. Like all off on these wild tangents that had nothing to do with reality! And you know, it was awful. And I did all lot of stuff to pursue [this] with the social worker, but I didn't know what happened after that. After the door was slammed in my face, it's clear that I wasn't welcome within that group home. And it is OK, it is never spoken about it. See that's the thing it's OK if it's never spoken about. But if you bring the unspoken out, and you want to work with this, like what is this in this person's life. Well then it gets slammed in your face! And staff, you know in this group home, there are two men that are having a relationship. They know what staff they can be demonstrative with each other in front of, and what staff they're not able to be demonstrative with each other. Or so if you wanna bring in some policy around sexuality about what is appropriate well, it just kind of closes down the whole business. It's just really, you know it is really frustrating, and it kind of you know hurts my heart to tell you the truth. You know, you don't know what to do. You have to be so careful about how you intervene, because you can make it; you think you're doing something helpful, but you can actually make it worse. [Emphases added]. Things can quickly become worse, because some professionals/ paraprofessionals cannot imagine anyone with a developmental disability identifying as LGB. Obviously and unfortunately, any outcome here only serves to further victimise people with developmental disabilities. As chronicled in Chapter One, if same-sex behaviour and queer performances are condoned based upon obligatory undetectable camouflage, people are in peril. Persons cannot openly access safer-sex information, discuss the negotiation of sexual roles, or even clarify LGB colloquialisms. If, as Judy recollected, one attempts to elucidate the in/visible nature of (same-sex) desires, people may very well be castigated. The surveillance machinery is put into high gear, and every action gets read through the lens of "pervert"—hence Judy's client had to be watched in the schoolyard. No doubt, after bringing LGB issues in the open, Judy too was seen differently by these staff. So different, that she was forbidden to provide any more support to that community residence. To reiterate, people with developmental disabilities are made more vulnerable. The institutional effects do not stop there however; anyone who attempts to support LGB persons with disabilities becomes-to greater or lesser degrees—vulnerable. 168 CHAPTER SEVEN Subversive Political Practice: Supporting Choice, Power and Control (Part 2) You know in terms of governmental agencies...and service providers, funds are administered through the [province] ...to provide residential and vocational services, case management services to people who fit the eligibility criteria. It is administered through the [regions] in the form of case management, and it is kind of a crap shoot whether you're going to be in place that affirms your sexuality or not. I mean I have definitely worked in places that were horrendous[ly] tough and the severe, severe homophobia.... I was at that job, and I had a co-worker who was at that the job [who] was referred to by the other co-workers as "Faggot." They liked me for a while... until they started perceiving me as too much rights-oriented. That's a bad habit I have, it's a personality flaw. So I've seen some pretty nasty stuff and I've seen some pretty supportive stuff. [Mitch's emphases]. -Mitch Supporting choice, power and control for people with disabilities in general, and in areas of sexual identification in particular, is tricky. As emphasised throughout this research, identity is not individually procured; it is a function of legitimated participation within communities. Group homes or residential placements operate as micro-communities, and, as Mitch has detailed above, may or may not be affirming or sympathetic to acts of alternative sexual identifications. Even if staff is positively inclined to support LGB identification(s), the rigor of daily/weekly surveillance within helping regimes only serves to reinforce the often fleeting and ephemeral nature of stigmatized performances of identity. In short, identification for people with developmental disabilities occurs always and already within normalizing practices—disabling, homophobic, heterosexist regimes. These regimes are particularly insidious; it is their very veneer of "normalcy" and "reasonableness" that allows them to continually (re)penetrate the work of care-giving. I have provided many such examples throughout this research. The point here is that one cannot singularly fight these systems without incurring significant personal emotional and physical costs, as many of the key participants have had to do. Further, battling institutionalized ableism and homophobia by oneself, although necessary simply to exist in this world, only serves to reinforce the individual causality model of disability—a model which disability theorists have stalwartly rejected (Oliver, 1990). That is to say, it is impossibly treacherous as a lone ranger with a disability to confront disabling regimes, because such confrontation often (re)inscribes disablement within the person, and thus back into the very regimes that have (always-already) produced "disability." So, what supporting choice, power and control in the lives of people with disabilities means is an adjustment or interruption (however momentarily) of these practices—to somehow bring about folks' legitimate participation in communities. I believe that to attempt to do so alone is almost futile. Hence, the need for support groups, for within such groups lie the possibility of collective queer and/or questioning identifications for people with developmental disabilities. Group facilitators and environments play fundamental roles in the construction of identification. Just as experiencing chemistry is constitutively different within a high school than, say, within a bio-tech firm or a pharmaceutical laboratory, so too is LGB signification distinctly unique within LGB groups with an open LGB facilitator than in (non-specific) groups with a straight (or non-) identified facilitator. As demonstrated in the previous chapter, although Judy believed herself to be an impartial advocate for all people with disabilities, (unknowingly) her practice proved exclusionary of performances of LGB identity. To reiterate at the risk of didacticism; this is not about Judy. This is about the relationship between identification and care-giving—how position and place ultimately impact the everyday politics of care—and more specifically here, how the provisions of care open and/or close identificatory possibilities. LGB-identified caregivers are necessarily intimately familiar with homophobia, heterosexism and heteronormativty. In this way, such caregivers have the opportunity at least to enact an entirely different kind of nurturing. For example, Mitch uses his cultural position to inform his counselling and educational work with the group: "All the things that I think have made me feel safe in my life as a gay man. I think I tried to bring those across to this group, and [to show the members that] here [are] the ways to do it," he declared. So, support groups facilitated by LGB persons provide a critical opportunity for people with disabilities not only to learn LGB performance patterns, but survival tactics in the face of LGB-related oppressions. But "being" a LGB facilitator is not enough. Jenn explains: Anybody who is willing to accept this person's self-identification [as someone] who is gay, or any of those terms [is an advocate for LGB persons with developmental disabilities]. Without trying to find an excuse for it, or reason for it. Like, "Oh there's just not enough opportunity for opposite-sex activities." Anybody who is willing to take that seriously is a helper, anybody who's not afraid to push somebody in one direction or another. Somebody who's not afraid of something like, "Well maybe it's [that] they're not gay [and] I'll make them gay," because they take them to a gay event. So people that are dealing with their own shit are able to support people with developmental disabilities. So, Mitch and Jenn see the need to be political facilitators, not only to support participants' sexuality choices, but to be not afraid to let their own identification enter into their care-giving practice. Political facilitators, who by their very candid use of their cultural positions, stand up to the LGB myths of conscription. The Queer Agenda The intent here is to showcase the deliberate strategic subversion within The LGB and Questioning Youth Support Group (GAB) and A Safe Place for GB Men with Developmental Disabilities and/or Men with who Have Sex with Men (A Safe Place) of disabling and heteronormative practices. More specifically, the aim is to demonstrate how LGB-identified political facilitators fashion such groups to lay way for the possibilities of queer and/or questioning identifications. The hope here is for analytic generalizability—that substantive elements of practice will be uncovered—elements replicable in other settings, which have the potential to subvert the prohibition of a number of (other/ed) identity possibilities. Mitch and Jenn have taught me that the primary agenda of any support group for LGB people with disabilities ideologically speaking must be explicitly political, and (then only if necessary) therapeutic or psychological. To not prioritize the political nature of such agendas is to virtually guarantee able-bodied and heteronormative (re)inscriptions within them. However implausible a political and therapeutic agenda may seem—a critical political agenda recognizes the impact of ruling relations upon the everyday so amelioration is targeted toward their interruption, and a therapeutic agenda is an artefact of the individual causal model of disability so amelioration targets one's self-esteem, one's life skills, etc.—they need not always be, as I hope to show. The contention here is that queer identification is not possible within a strictly therapeutic support group; in other words, a critical political slant is necessary in order to occasion therapeutic outcomes. To use the special education term, "self-determination is not a solitary act or intervention; it is only possible within legitimated community.9 In this way these groups are politically radical support groups. But, perhaps Mitch's words best summarize the edict of these groups: [To] really affirm to people [with disabilities], if you were abused or coerced by people, you know, we had someone talk about extreme exploitation—financial and sexual exploitation by people without disabilities. Just have people know that, you know there's a lot of people in the world who are evil, and that is really nothing to do with you being gay. Trying to make sure people are not linking some of these things in their minds: these negative experiences and their choice of lifestyle. 9 P l e a s e note that a l though terms s u c h a s 'se l f -determinat ion and 'sel f - ident i f icat ion will cont inue to be u s e d throughout this p iece , I a m us ing them adv ised ly . Tha t is, identity is a lways to be unders tood a s a funct ion of group par t ic ipa t ion—even se l f -determined ident i f icat ions. And in some ways trying to give them some techniques and strategies for avoiding those kinds of situations. [Emphases added]. It is easy to overlook the revolutionary nature of Mitch's practice, and so this statement bears further examination. What Mitch is saying is that the community is not necessarily a "cozy" place for people with disabilities, so the job of helping professionals is to help people deal with oppression and discrimination; not to make people as "normal" as possible, not to inundate them with life-skills training. To quote Dave Hingsburger (2001), "quantity of skills does not equal quality of life." Mitch says it again another way: [LGB-identifiedpeople with disabilities need] ...a place where someone can come in and mull that stuff [homophobia, heterosexism, heternormativity] over. Lots of people walking around with guilt about having their sexual needs met—adult bookstores or through public sex places and not understanding, you know it's the kind of thing where I would make comments like, "This is only a bad thing if you think it's bad." It's not, It's not something that everyone in the world walks around and says it's bad, even though It seems that way. Luckily, we have had other participants who have said, "You know, between boyfriends nothing beats a quickie at the bookstore. "And we have been lucky to have participants with very broad experiences, from the extremely negative to positive. [Emphases added]. What follows is a brief description of the political support groups GAB and A Safe Place, followed by Jenn and Mitch's subversive practices within them. The aim here is not to contrast A Safe Place and GAB; rather, to elucidate how contexts can be created to accommodate, celebrate, and even rejoice in difference! GAB: The LGB and Questioning Youth Support Group and A Safe Place for Gay/Bisexual Men with Developmental Disabilities (and/or Men with who Have Sex with Men) At the time of the interviews, Jenn had left her position as Sexual Health Educator at the Sunnyhill Sexual Resource Network, and is currently the Youth Services Co-ordinator at the local LGB Centre. Jenn works with approximately 70 LGB youth, of which she was aware of three clients who have a developmental disability and identify that way...and two clients that do not identify as having a developmental disability but, their cognitive abilities, their ability to read and write and communicate verbally, their ability to function socially is pretty limited so, they are people [that are suspected] of having a developmental disability. Five clients represent about 7% of Jenn's caseload, which is a significant percentage, given that other professionals working with LGB persons may not recognise or even acknowledge people with developmental disabilities in their midst (see Hingsburger, 1993). At any rate, Jenn feels that her job title does not begin to describe her many responsibilities. She provides both in-house and out-reach one-to-one counselling to youth, supervises the Youth Worker, and participates in the daily operation of the Centre. Most notably Jenn facilitates the youth coming-out and/or questioning group, namely GAB, a group in which people with developmental disabilities sometimes partake. GAB welcomes people with and without disabilities. The "mixed-company" within GAB likely inhibits identity possibilities for people with disabilities since the drive to pass as LGB-normal may be as strong as the one to pass as hetero-normal. It is noteworthy, however, that members with disabilities often self-initiated participation within GAB, and so they did not carry the stigma of an entire referral system, of already being categorically different before they even entered the LGB Centre's rooms. This simple fact opens up completely different possibilities of identification, than in a group like Smart Dating. A Safe Place, designed for GB and questioning men with developmental disabilities, offers members a space, which perhaps most closely meets their needs. Mitch founded and facilitates the group. As mentioned, he has supported people with developmental disabilities for many years as a direct caregiver, residential supervisor, and an administrator. At the time of our interviews, Mitch monitored and evaluated a range of social services for people with disabilities. Because he was responsible for co-ordinating state-wide HIV education classes, he saw the need for A Safe Place. The group "formed basically because I kept hearing about people who needed support in terms of social skills or relationship skills and who weren't able to find those in the conventional service system", said Mitch. In an effort to make A Safe Place inclusive, (or in Mitch's words "to meet the reality of what people might be dealing with") anyone in need of the group is welcome—regardless of their "official" or "unofficial" disability status. In other words, most group members are diagnosed with a developmental disability, but some are labelled with mental health issues, and some are not formally labelled at all. A Safe Place meets in a West Coast American city. Although a similar group was featured during a recent television episode of In The Life (2000), there are only a few such groups across North America, according to Dave Hingsburger (personal communication, 2000). Subvers ive Pol i t ical Pract ice Many theorists have remarked upon the interlocking nature of oppressions (Peters, 1996). D'Emilio (1992) for example, points out that heterosexist attitudes are derived from sexist ones. That is, women are often forced into submissive roles within our society, and so are gay men. In this way, gay men are thought to be (literally) enacting the roles of women. Being submissive is at odds with being a "real man." Having said that, for purposes of clarity here, the tactics to subvert able-bodied prejudice and "straight" prejudice are presented separately, although I am not suggesting that they occur discretely. In order to combat disability oppression, Mitch and Jenn use the following strategies within their groups: • They attempt to maximize participation by minimising red-tape; this also facilitates participants' emotional safety and security • The groups are structured around their around their own needs; Mitch and Jenn maintain organic agendas; • Although arranged loosely and flexible, at the same time group routines are somewhat predictable; • Wherever possible, Mitch and Jenn use plain language, often translating "gay-speak" and "clinical-ese;" • Finally, each endeavours to mitigate the (re)inscription of disability oppression among group participants. Minimal Red Tape, Maximal Participation As stated, people with disabilities most often self-refer to GAB. Admission is not contingent upon the social service system; this is important. Because there is limited red-tape involved in accessing the Centre's LGB youth groups and because the programming is fairly relaxed, the kinds of participatory possibilities for persons with developmental disabilities are much different than in services with highly specific (and often discriminatory) mandates. Consequently, the ways in which disability and sexuality are constructed within the Centre's programs are much different than in other more rigid settings. Jenn comments: The three young people that come right now are um... and the two that I'm not so sure of, who I think might be [disabled], are all street involved, right? They all live really unstable lives, and so they get self-referred, because that's a place [the youth group] where street involved can also go. And so that's, it wasn't like they were referred to us because I'm connected to disabilities organisations and their referral was made. It's just more serendipity that they ended up there. Any environment in which people with disabilities have significant control over their own participation may seem providential, for gate-keeping as excessive bureaucracy is concrete confirmation of ruling relations at work. For people with developmental disabilities, incessant paperwork hoops act as both huge barriers to group involvement, and signals that (pre)define the group's dynamic. Therefore, Mitch feels that accommodations are required for any service or program that attempts to be inclusive of people with developmental disabilities. In the following example, the consent form itself precluded a man getting an AIDS test; Mitch explains: / keep referring back to my HIV experience because... I've had people turned away for services [or who] either quit ovedly, [so] I've tried to cut a deal with local AIDS organisations, and I am not sure if they still do it. We have asked them (and very strongly) not to thrust a consent form in front of people in order to get tested. Because we've heard people before, you know they've heard of the words "anonymous" and "confidential." But they didn't want to—there was one, who was absolutely panicked, and when and they know these words because they've been in the social service system and then they say, "No I will come back another time." And that stuff scares the shit out of me. Because I want people to be tested if they think they need to be tested. So trying to, trying to make some of these groups accessible by saying under the ADA [Americans with Disabilities Act] there is an absolute requirement that they're accessible to all people. And if they need to do things around making them accessible to people with the cognitive disability, and also just the fact, I don't want to see people hurt any more than they have already been hurt. So, red tape and prolonged contact with disability-related services can serve as impediments to group participation for people with disabilities. Facilitating Emotional and Physical Safety Mitch and Jenn claim that the fewer "official channels" required to join a group, the greater the kinds of identity possibilities therein, likely because participants feel safer defining some of their own participatory parameters. Emotional security has everything to do with choice and control, which begin with members having the option to participate (or not). Unfortunately, people with disabilities are too often forced to partake in programs or services not of their choosing (Jenkinson, 1993). As an instructor in HIV prevention for people with disabilities, Mitch remembers several students who literally had no idea why they were in class—they had been required to attend for reasons completely unbeknownst to themselves! Not to suggest that HIV education is unproductive, but to always bear in mind that to continually usurp the choices of people with developmental disabilities has grave consequences. Indeed, compulsory participation is vastly different than elected participation, and from a learning standpoint the latter is much preferred (Lave & Wenger, 1991). Therefore, people with disabilities must choose their own cultural and ameliorative communities, especially if the aim is to effect some identitificatory change or affiliation. Political support groups for people with disabilities must reflect their purpose within their constitution. That is, facilitators and group members must model and enact mutuality, empowerment, and justice within their own fold, for it is these very concepts that are so tied to security. Safety, both physical and emotional, may be the paramount educative goal when working with such vulnerable people; Mitch explains: Because some people were not safe, who didn't have the ability to work, to just burst in the door and who could say, "I just met man of my dreams." And to not be able to do that creates a really unsafe situation for people, I think. To know at some point the difference between what is a safe situation and what is not. You know, I think that there is some self-esteem stuff that creates a safety net. [Emphases added]. To ask more plainly: How is it possible to instil a sense of safety within a support group when one is forced to be there? A Flexible Structure with an Organic Agenda Theoretically professionals espouse "client" power, control, and choice to promote safety and security; but in reality, often people with disabilities must fit into existing services, programs and curricula. A lifetime of such compliance and deference, not surprisingly, often leads to learned helplessness for people with developmental disabilities (Jenkinson, 1993). In order to counter-act these practices, Jenn and Mitch deemed it imperative that members significantly define the parameters of their group. For example, Mitch stated that members of A Safe Place initiated the following rules: • "Start each group meeting with the check-in, and each person, goes around and, • They can talk about whatever they want," • "No one has to answer guestions if they don't want to," • "One person talks at a time," • "What's said in group is not passed on in any way that can identify other individuals." The only rule that facilitators added was: • "Facilitators and participants will not date each other" Although the rules remain quite constant from week to week, obviously each meeting's agenda is different. Mitch conducts an initial check-in, in which everyone has an initial opportunity to share. Then, he summarises the topics, and proposes a tentative outline. For instance, Mitch may suggest something like, "OK it seems that a lot of people want to talk about... perceived attractiveness in the gay community." Jenn concurs, the GAB Drop-in is: loose, ...I mean, we have some pretty casual programming. It is not very structured, pretty (pause) lots of the discussion groups...The education that we do in our programs is very much taking advantage of the teachable moment. So, say I'm chatting with a bunch of folks at a drop-in, and one of the folks says, "And somebody..." and talks about this person's sex life, and so you sort of try and draw away from gossiping to, you know something like, "What is that about?... You know, taking somebody home, somebody you don't know, what is the risk of that?" and moving into that conversation. By allowing participants to co-determine what is to be discussed, diverse conversational possibilities can be explored. For many people with developmental disabilities, having such direct access to structuring a social environment may be foreign, and perhaps even more so when the milieu is centred on LGB issues; Mitch explains: You know when we do our group the first couple of sessions people are up tight, and then they realise they can talk about you know, exactly what they want to talk about. And that they don't have anyone else in their life; they don't have anywhere else in their life where they can process this. Plain Language: Translating Gay-Speak and Clinical-ese One of the principal ways to allow members with disabilities to process things is to use plain language (CACL, 1997). Based on his HIV educational experiences, Mitch frequently translates technical terms into their street idioms: [I often] explain terminology, clinical terminology as the terms the doctor might use. So, you know you might hear the doctor use the word "penis", but you use the word "cock" or something like that, that seems to be really effective to use for people. People seem to be able to understand those questions and those terminologies. And that's also a jumping off [point into the discussion of] "When is it appropriate to use what terminology?" You know I can use these words when I talk to my friends, [but] on the bus I'm going to probably change my language a little bit, so that I am not perceived as harassing anyone, or creating a disturbance on the bus. Not only are clinical terms unfamiliar to some G B participants with disabilities, so too are certain LGB expressions, as Mitch explains: You know, like the guy that got asked: "Are you a top, or bottom?" He kind of got very flustered. Clearly he was trying very hard to fit in there and act like he did know, but [he didn't know]." You know, that's the point that I would come in and say, "You know, you don't have to answer." And a person can say, "Hey, you know I do want to answer; I just haven't got my, my words together." So, Mitch may also need to translate the meanings of gay-speak. Obviously, participants' LGB cultural competencies vary, and these variances can sometimes be a site in which members patronise each other. Not unexpectedly, members can demean each other since they may have internalized disability-prejudices. Combating the (re)inscription of disabling practices is the subject of the next section. Mitigating the (Re)lnscription of Disability Oppression among Group Participants and Facilitating Inclusion In the example above, members of A Safe Place teased the fellow who was confused about the meanings of "top" and "bottom." Mitch interjects at these points— points in which members may be intolerant of one another. He does not chastise the "taunters"; to do so would overtly engrave able-bodied hegemony. Mitch either reminds a confused participant that he is not obligated to answer and/or he draws the conversation away from the personal. Mitch re-frames the topic as a common concern, that way everyone is able to "save face," yet the issue can still be addressed. At other times, he and his co-facilitator may simply validate the taunted: 180 Sometimes participants can be hard on each other, a little bit tough on each other, (thoughtful pause) [then] one of the facilitators will jump up again. You know someone will say, "Well that was really stupid to masturbate in Fred Myers bathroom." We would say, "Well are you really thinking about what is smart or stupid when you are really horny?" You know, you know or someone says, "I should have known that time, he was the dancer at the bar. He was surrounded by friends. I should have known that when I walked up to him he wouldn't want someone like me." You know it's one of the stories that is very poignant to me. And you know if someone says, "You know those dancers they're prostitutes." You know and I might say, "That isn't always true. Some people [who] were perceived attractive by lot of other people don't even really have a lot of dates, because people are afraid to approach them. So they want someone who is sincere, they don't want some who just thinks that they look good in a G-string" or something like that. Disabling Practices within LGB Spaces Battling disabling practices is more challenging for Jenn since the LGB Centre and the youth group, GAB, are primarily able-bodied (LGB) spaces; however, having worked at S S R N , she has useful background from which to draw in order to support people with developmental disabilities. Once a month, the entire LGB Centre staff reflect upon how they can reach under-served LGB communities. At one such meeting, Jenn presented guidelines on how to facilitate the inclusion of LGB persons with developmental disabilities, such as using plain language, speaking concretely, allowing for processing time and employing visual reminders. However, it is one thing to educate paid employees about inclusionary practices; it is another matter entirely to bring about inclusion of people with disabilities among LGB youth. First, inclusionary challenges are presented and then some solutions are offered. People without disabilities (including LGB youth) tend to speak in metaphoric and idiomatic terms; therefore, the conversational level at GAB drop-ins can often serve to exclude people with developmental disabilities. Jenn said, "the folks with [developmental] disabilities in that group don't always follow that conversation because it can get pretty sophisticated, pretty intellectual." Another inclusionary hurdle for people with disabilities may be their understanding of relational boundaries. Knowing the kinds of "talk, trust, and touch" appropriate to different situations represents a complexity of social skills that typically present as a challenge for people with developmental disabilities (Champagne & Walker-Hirsch, 1993). Unfortunately, these confusions are often exacerbated by able-bodied practice (see especially, Hingsburger & Harber, 1998). A serious lack of "social skills" can gravely impede participation. Jenn recounts a trying situation: The other young fellow, who identifies as gay, but is sexually aggressive with anybody who has pulse. So, so he came to us because he identified to his one-to-one worker that he was gay, and his one-to-one worker found us and brought into the group. But, he has been a sexual harassment nightmare! In, in showing up! He has got some huge issues around boundaries, and sexual behaviour that doesn't seem to have a particular orientation. Another person with a developmental disability lacking social skills was quickly stigmatized by the LGB youth. Again, Jenn explains: You know like I had to deal with this big thing one night because kids started calling him retard in group right? And so he sort of backed away from [them], and [then said], "I'm not one of those, I'm not" yeah, it was interesting because they, they, called him that name, but his behaviour towards them was more aggressive at that time. And they're just aware of him being slower than they are, so that was the way they got back him to nail him verbally. So, he really does not identify or take any [label] with his with his peers; he doesn't. He would, if he could, avoid anybody knowing that he has a disability. These examples encapsulate two significant societal limits: we tend not to tolerate physical aggression and sexual inappropriateness. Anyone violating these rules usually suffers some form of societal exclusion. My intent here is not to blame or condemn people with developmental disabilities who lack social skills. Rather, this analysis elucidates what special educators already know. In order for inclusion to work in whatever setting, it must be supported and planned. In order to support the inclusion of people with developmental disabilities, Jenn uses a number of strategies. For example, Jenn makes herself available to LGB persons with disabilities outside of the drop-ins. In fact, she has visited some of her "clinets" in 1 hospitals, restaurants and other community places. During these one-on-one sessions, Jenn provides an opportunity for individuals to talk through issues and ask questions or clarify things that were brought up in GAB, for example. Jenn feels that directly intervening during group discussions is awkward, and further, to interrupt the group's flow and re-state issues for the benefit of individuals with disabilities, she feels would most likely alienate them from the group: "I am not going to pull somebody out of the drop-in and stigmatize them and say to them 'I don't think you're understanding the conversation." Also, Jenn attempts to facilitate nurturing, accepting friendships between LGB persons with and without disabilities (Bogdan & Taylor, 1987, 1989, Taylor & Bogdan, 1989). Strategies to Combat LGB Oppression Of course, LGB-identified people with disabilities also battle LGB prejudices, and as such, Jenn and Mitch must also subvert homophobic and hetereosexist norms. Perhaps the most powerful and radical act in doing so is the very existence of the LGB groups themselves; however, LGB collectives do not alone ameliorate heteronormative effects. Just as disabling practices may be (re)inscribed into the dynamics of support groups for people with developmental disabilities, so too may heterosexist practices enter into LGB support groups. What is at issue here is the calculated and rebellious apparatus within the groups—those strategies that Jenn and Mitch use both as group guidelines and as tactical models for members to use outside of the groups. To repeat, disabling and homophobic practices often overlap, especially in terms of their material effects; nonetheless, here are some of the strategies Mitch and Jenn use to combat LGB (and disability) oppressions: • They absolutely assert the rights of individuals to the sexual identification of their own choosing; • They work against other professionals; • They validate and "normalize" participants' experiences within LGB communities; • Finally, Mitch and Jenn model respect for all sexual identifications (LGB). Performance Rights not Performance Rites Jenn, Mitch, and Will firmly advocated for the rights of people with disabilities to self-determination, to self-identification. What matters, they promote, is an individual's right to choose. Such fervent beliefs butt against LGB myths of recruitment and conscription. All caregivers supporting any queer and/or questioning identification must deal with this issue; I asked Will about this: Scott: The fears that I would have in that situation, you know some people might say you are promoting homosexuality. Did you ever fear that? Will: No, I never felt that, though I can understand what you're talking about. Kenneth himself was always self-identified. And who he portrayed, he always portrayed that he was more capable. It could be more that people afterwards would go, "Do you think that's right?" And I would say, "Well that's him and [he is] making his choices. He has a right to do that." [Will's emphases]. The right to self-identification, as Mitch explains, is in no way tied to the (perceived) origin of the (LGB) sexualities: I've been very interested in that. To me it's extremely interesting that people come out at all with societal attitudes that are so negative. You know, when I worked in my first ever group-home job, I worked with your archetype full-flaming homosexual. And this is not something, it was like where did he learn this? He had a very conventional family. He had no access to the gay community. He had no role models who were doing the things that he was doing. He was clearly comfortable as a man who was pretty effeminate; he was comfortable with that. Not that I'm equating homosexuality with effeminacy, but he was someone that everyone who saw him thought he was gay. There was no question to people that this man was gay and it really struck me [that] it was so painfully obvious that this was not a learned behaviour. That's the manifestation of that, maybe at some cultural origins. I'm not all that interested in the debate of nature versus nurture. I have a background in anthropology and it is pretty clear that people's sexuality is innate. And the manifestation of it is clearly based on their cultural experience. I'm not that fascinated with the topic. The people more concerned about [homosexuality] being a learned behaviour are the people [who] are trying to get people to unlearn it. [Emphases added]. Although there may or may not be readily determinable origins of LGB sexualities, the claim to any sexual identification may presuppose that there are real, bona fide identifications to begin with. In a strange way, a queer analysis may be considered discriminatory against people with disabilities, insofar as LGB identifications are concerned. Just as feminists object to the post-modern "death of the subject" since in many ways womyn have only begun to assert their voice (Brodribb, 1992), people with disabilities may similarly protest the "death of the gay." To suggest that LGB identities are not authentic, given all the material and emotional hardship that some people with developmental disabilities have endured to "be" gay, seems patently unjust and cruel. So, spaces such as GAB, which allow participants to float among labels, in Jenn's view are not challenging the fleeting nature of identity. Rather, each label is considered to be a valued and true identification, although participants may journey among and in several of them: All of the young people that I have come into contact with at the (LGB) Centre, who I am aware of having a disability or suspect of having a disability were quite certain that they were gay, or lesbian, or trans[gendered] in the moment. I know I talked about that young woman, and her label is sort of evolving, but it has never been a question of "I think I am" it's "that I am." [Emphases added]. Undoing the Effects of Other/inq Professionals Predictably, supporting individuals' right to declare, "I am" meant that Mitch and Jenn were sometimes forced to work against the advice, counsel, and guidance of other caregivers. As someone who chooses to support healthy LGB expressions, Jenn felt that she sometimes had to undo the effects of other professionals: In fact, I got called to go to speak to a young woman who was with another service, who identified herself as lesbian to a care-provider. And I went to do some one-on-one [counselling] with her, I was led to believe that she had questions about her sexuality, that's how it was presented to me. And when I arrived, it was obvious to me from her physical appearance that she had FAS, and as I sort of started talking and the conversation sort of meandered and came back and meandered and came back she sort of a confirmed that forme. And I asked her what questions she had about sexual orientation, and she just said none. None! She didn't, she didn't know what that meant. She didn't understand what I was talking about. And I said, when your caregiver called me, she said she thinks that you've, you might be a lesbian. And she replied, "No, I know I'm a lesbian." And I said you know, after ...I said 1 "Do you mind talking about that?" And she said, "Sure whatever." I asked, "When did you first realise?" And she said, "Blah, blah, blah, you know when I was 16 years old." ...And I said, "Did you know this person is going to call me because I work in a gay organisation?" She goes, "I would like to meet other gay people, I would like to meet other lesbians, but I don't have any questions about that." You know, like, (pause) thanks for asking (pause) and (pause) I mean, she came to the [GAB] drop-ins after that. [Emphases added]. Luckily, this young person was able to access GAB fairly easily. Of course, undoing the effects of other professionals may be much more difficult than this example. As demonstrated throughout this piece, however, constraining LGB identifications is alarmingly easy for those in power over people with disabilities. Mitch may be sarcastic when he demonstrates the following use of the normalization principle as normifying practice, but the glib nature of these remarks cannot hide the grim effects of these disabling practices: How about we go buy an ice-cream instead of going to that gay group? These are your choices, but we'll still keep giving you them until you pick the right one. So, in order to undo both insidious and blatant prejudices, Mitch and Jenn create spaces where the context itself represents a serious kind of identity contestation. There are No Small Parts: All Sexualities Valued In order to support participants' rights to self-determination, self-identification, Mitch and Jenn structured their groups so that all sexual identifications (LGB) are valid, treasured, and cherished. If the unspoken, yet overwhelmingly heterosexual context compels Smart Dating members to identify as straight (or to pass), the contexts within A Safe Place and GAB are interrogation sites of the normal. Context is made conscious. Simply stated, the youth group staff work to provide an environment in which all sexualities ("even" heterosexual) are valued: The two folks with FAS, one identified as a gay man, the other identified as transgendered at one point, and now is identifying as bisexual. I think that my interpretation of her sexuality, from what I have seen is that she is looking for a place to fit and she has questions about sexuality, her own sexuality. I don't think she knows quite how to form those questions, but she's found a place where she can say that stuff, and nobody freaks out. We're just sort of letting her swim among and in, in those labels until she figures out what works for her. When she was identifying as transgendered, she was dressing as, as a young man, full-time and wanted to be called by a male name for six months. So she was, (pause) and her concentration span is pretty limited, so for her to do that for an extended period of time garnered certain respect, you know. Like she was, she was serious. We knew then. And then since then hasn't, is no longer identifying as trans[gendered]. But, [now] says that she is bisexual. I sort of try to make it, I have been saying, "You can come here even if you don't identify as LGB." This is a place for allies as well, and I know you have friends here so don't, don't take on the label just so that you can be here. And she thought, (pause) that didn't seem to shift anything for her. [Emphases added]. Members can "swim" in and among identifications with little repudiation, for there is no subtle, ubiquitous pressure to identify as anything in particular because identification is open—even heterosexual. Therefore, GAB and A Safe Place members learn how to value and validate any sexual identification, LGB and straight, or to turn a phrase "gay but not narrow." More importantly, members appreciate that within such walls, queer and/or questioning sexual performances are open to them. Validate and "Normalize" Experiences in LGB Communities Although members may choose a sexual identification from a varied performance palette inside these groups, in many ways the "real" work of identification lies outside of them. It is problematic—if not nearly impossible—for LGB caregivers to validate members within LGB communities outside of the group, as will be analysed in the next chapter. Within A Safe Place, however, Mitch and his co-facilitator can use their gay-identification to "normalize" the group members' experiences: We are often affirming to people that they're dealing with the exact same issues that other men who don't have disabilities [have to deal with]. Lots of people walk in to the bar and are not treated as if they are the new Madonnas, you know? We've all had to face that. You know, I have had to say to the guys when that comes up, "There's bars and I have been to places where no one will talk to me because I'm not muscular. And in my life I have sought both places where people would appreciate my body type or whatever." I just try to say things along those lines. Tried to get people, to [say to] people this isn't the only way to meet people and trying to give people other ideas. But I [do say], "This is really normal stuff. This is what lots of people deal with." Using one's cultural position in this way, as Smith (1993) has argued, affords possibilities for making concrete the material effects of the play of differences, stigma, and the impacts of systemic discrimination. In other words, able-bodied LGB identifications are constitutively and materially different than LGB identifications of persons with developmental disabilities. To off-handedly and repeatedly suggest that "rejection is normal" can be trite in the context of LGB persons with developmental disabilities. Alternatively, to momentarily acknowledge a common struggle for all LGB persons—namely, the struggle to belong—can serve to validate members' experiences. Also, such moments can be a jumping off point to strategize with participants' ways and means of seeking other, potentially more nurturing places, for LGB validation. Conc lus ion Effective special educators for LGB persons with developmental disabilities must work against both LGB and disability oppression within their practice. More particularly, they must account for their identification within their practice, and perhaps LGB professionals may have more insight in this regard, since their own identifications likely spawn some personal reflectivities. However, as first noted in Chapter Two, accounting for Smith's ruling relations within our ameliorative practice seems almost inaccessible, regardless of our cultural identifications. In some ways, special education as a discipline is beginning to be able to acknowledge that the application of our principles may be in error or biased (see Sasso, Conroy, Stichter, & Fox, 2001). A recognition of the tools themselves as instruments and propagators of bias is yet another level to be taken up in the concluding chapter. 1 C H A P T E R EIGHT Conc lus ions Introduction Identity politics formulate explicatory narratives that position individuals within distinct cultural groups—LGB people, people with disabilities, and LGB people with disabilities. Disability and queerness must be understood from the standpoint of those acting through those experiences; however, material queer theorists recognise that both the labelled and unlabelled "co-create" queerness and disability (Morton, 1996). As Sedgwick (1990) so aptly deconstructed, heterosexuality depends upon homosexuality—not, as popularly held, the other way round. Heterosexuality is homosexuality's inter-dependant bastard. As much as unlabelled people locate disability (and to an extent queerness) "within" labelled people, everyone acts through categories: abled/disabled, heterosexual/homosexual, straight/gay. All categories simultaneously limit and foster certain kinds of participation within certain kinds of communities. It is the ruling relations located within (and propagated through) these categorical binaries that are of import here. To say it another way, Smith's institutional regimes perform themselves. Sets of abling/disabling practices, as ruling relations, are so "categorically" entrenched within our professional ameliorative work that as caregivers—as those positionally favoured— we fail to see ourselves performing them. In this sense, to use Goffman's language, caregiver identity management strategies are implicated in the production of the stigma. The relations of ruling perform us, if you will. Perhaps Shakespeare said it best: "All the world's a stage, and all the men and women merely players." Alternatively, material performance of queerness and disability offers a holistic view of the drama; everything is on the stage, including all the actors and all their discursive, hegemonic scripts. 189 The unique contribution that a queer perspective brings to this analysis is the recognition and appreciation of the complexity of the ruling relations. Rather than "discrete," separate practices or identities, (for example, caregiver/cared-for) a queer view takes these dualities as interlocking relational systems, as systemic tactics that differentially produce disparity and its material effects, depending upon context. For example, Sedgwick (1993) argued that the public/private split is not actually a polar dichotomy at all, but a system of practices variantly produced to enact a kind of implicit heterosexuality, a heterosexuality that pervasively functions so normally that it "ceases to function as a sexuality" (p. 10). She explains: Think of how a culturally central concept like public/private is organized so as to preserve for heterosexuality the unproblematicalness, the apparent naturalness, of its discretionary choice between display and concealment: "public" names the space where cross-sex couple may, whenever they feel like it, display affection freely, while same-sex couples must always conceal it; while "privacy," to the degree that it is a right codified in U.S. law, has historically been centred on the protection-form-scrutiny of the married, cross-sex couple, a scrutiny to which (since the 1986 decision in Bowers vs. Hardwick) same-sex relations on the other hand are unbendingly subject (Sedgwick, 1993, p 10). To "truly" advocate for people with disabilities and/or queer folk is to act knowingly and purposefully "outside" of these classic divides, beyond the categories and dualisms of handicapped/non-handicapped, ability/disability, homosexual/heterosexual, acceptance/rejection—quite a feat, indeed! The goals of this project are not so lofty, although not straightforward either. What I attempt here is to uncover problematic areas, namely areas in which non-labelled people (at least with respect to dis/ability), with the best of intentions, unknowingly create or exacerbate disabling conditions for GB-identified people with developmental disabilities. What is at stake in this research is an analysis that elucidates the paradigmatic clashes, the "points of rupture," between care-giving/care-receiving, 190 between queer acts of identification of people with disabilities and the acts of dis-identification and disavowal of caregivers. I argue that ruling relations are so innocuously and insidiously powerful and complex that regardless of a caregiver's cultural position—even withstanding one's politicised and/or reflective nature of (and within) such a position—it is extremely difficult to see or appreciate one's encumbering effects. Even competent LGB caregivers, as showcased in Chapter Six, with significant experience battling disabling regimes alongside people with disabilities, are simultaneously (albeit often unknowingly) re-inscribing "disability" and "dis-identification" into those very regimes. In the first section of Chapter Eight, a queer materialist view of disability theory provides the frame to analyze the identification/dis-identification and acceptance/rejection divides of ruling relations in the context of G B and developmental disability performance. In the second section, valid/in/valid, public/private and subversive/complacent systemic ruling relations are explored. 191 "All the world's a stage, And all the men and women merely players. They have their exits and their entrances, And one man in his time plays many parts, His acts being seven ages." from Shakespeare, W. As You Like It (Act II, Scene vii , Rows 139-143). 192 Qu(ie)erying Disability Theory: Ability/Disability, Acceptance/Rejection, and Identification/Dis-ldentification Categories are a "drag" to the extent that we act as though classifications are authentic, while often naturalizing the artifactuality of their effects. Often, able-bodied, heterosexually-identified people do not understand the repercussions of labelling others. Because developmental disability is almost always seen as a stigma, categorizing someone creates a need for the so-labelled to mitigate the syndrome, the diagnosis, the label. "Passing," a most frequent identity management tool, involves acquiescence, deferral and submission to persons without disabilities. From the perspective of disability theory, these conditions constitute disability—conditions under the ruling relations that re/produce apparently able-bodied persons. Disabling dramas inevitably impact upon the everyday of those so-labelled, including the depletion of material, physical and emotional resources. Understandably, many people with labels (of developmental disability) are angry at such injustices. To make matters worse, the rage of people with developmental disabilities is often attributed to the disability itself, and not to people's inevitable predicaments! Anger may be the most appropriate emotion to be expressing, if one were so-labelled and socialised. Stated queerly, once branded, it is nearly impossible to interrupt disabling repetitions since all acts of identification are now read through a disability—the old, "prove-you're-not-insane-whilst-confined-in-an-insane-asylum" routine. We, as those without disabilities, do not see the interruptions because we simply interpret the interruptions as part of the disability. To use Smith's (1987, 1999) language, we are often completely blind to the impact of ruling relations upon people with developmental disabilities; all identificatory acts are reduced to the individual. Disabling ascription becomes so all-encompassing, so robust that we cannot see when "a client" subverts the norm. We never see revolution, rather we see "behaviour problems"—and these dramas begin early in life. First, You are Disabled; Then, You are Disabled As pointed out in the drag of competence sub-theme, all key participants may be described as "high-functioning." Because of their "nearly culturally acceptable proficiencies," they may have been perceived normal enough to avoid early diagnoses. Early in their educational careers, however, most participants were marked with some ascription of deficiency. Evan and Kenneth were both diagnosed with FAS before they entered school; Thomas, Eric, and Lawrence were each diagnosed with mild mental handicap, shortly after school entry, and Cai was diagnosed with Asperger's syndrome in his early teens. As described, Kevin was diagnosed as schizophrenic with some neurological deficits as an adult. All key participants then, except Kevin, were "disabled" long before they were "gay." Saddled with these labels so early in life, participants variously struggled to incorporate and/or expunge their diagnoses from their identity frameworks. Kenneth does not identify at all as a person with FAS or a disability—at least not in gay communities. Even participants who currently accept the label as part of "who they are" experienced significant conflict to arrive at that understanding. For example, Evan, unlike Kenneth, appears to be at peace with his FAS ("Fags Are Silly") attribution, but such was not always the case. In his early years, Evan's sister told him that he had F A S , although he did not understand what the term implied. Indeed, for many years being so diagnosed, and not being "informed" distressed Evan. When he described these years, Evan spoke of FAS as an entity—quite separate from himself. The "entity" 1 was unknown, possibly possessing some mysterious power with which to engulf him. Hence, FAS was a constant source of stress and worry: The worry came in, really the worry came when I started thinking about different aspects of FAS. ...I know I had no idea, and that, that's how it started and I guess I worry about it. I thought, "What is it going to do? Is [it] going to get out of hand?" or "Is it going to go totally crazy?" and I'll end up, [pause] ...I just didn't know where it was going to take me. [Emphases added]. Presumably, his sister's intention was ameliorative, meant to help Evan in some way. Unfortunately quite the opposite happened, a situation that aptly exemplifies the often naive, yet destructive, conduct of able-bodied allies. Obviously, Evan did not define himself as a person with FAS earlier in his life. Quite the contrary, he needed to "stop" the FAS to alleviate the concomitant anxiety and apprehension. Again, Evan regarded his anxiety, not endemic to F A S , but as a result of being so labelled: Yeah, yeah, I want to know as much as I possibly can so that I can realise that, and then I can stop it. ..And when [what] I mean by stopping is that I don't have to worry about it anymore. I don't have to think about it either. [I] have tried to figure it out. Only recently, with the help of his partner, has Evan come to terms with being diagnosed with FAS. Presently, Cal appeared to be comfortable with a disability label, Asperger's syndrome, comprising part of his identification. As with Evan, when Cal was younger; however, he resisted the diagnosis, especially when it was potentially another castigatory difference to be renounced out in the schoolyard: Scott: I'm wondering about actually, how you came to terms with Asperger's. Like was it a gradual acceptance for you, your Asperger's, or was it overnight? Cal: It wasn't acceptance. I had been picked on so much that I didn't want to be something. The only reason why I maybe wanted to be something is maybe because I could find out who I am. But I was one of the loneliest people in the world. The first time I met somebody with Asperger's Syndrome was that I know of, was a, when I joined the Autism society, I met somebody a few years later. Only when Cai connected with others so labelled did he begin to think of Asperger's differently; only then did he begin to cultivate a "positive" disabled identity. Difference in Rejection/Acceptance Acceptance of a disability label—especially one of developmental disability—is not easy; nor is it entirely clear what such acceptance implicates, or how an understanding of disability enters into one's identity. Some disability theorists may suggest that "disability acceptance" represents the penultimate efficiency of disabling practices: you tell someone long enough and well enough that they are disabled, and they become disabled. In this sense, acceptance is akin to false consciousness (Lather, 1991; Smith, 1987, 1990,1999). What is at stake here is the individual model of disabling causality; disability is a personal tragedy. Such a singular model of disability prevents any meaningful participation of persons with developmental disabilities in almost any community—even communities of people with other disabilities. To accept the individual model of disability is to implicitly accept that able-bodied persons are always-already in control of legitimating labelled people. After all, as Oliver (1990) and others have well documented, it is primarily people without disabilities, who label and construct disability as individual instances of tragedy, affliction and suffering, etc. In turn, people with disabilities re-inscribe these notions within their own "emancipatory" support groups, the reader should note the resistance within disability movements to accept people with developmental disabilities (Dudley, 1997; Dybwad & Bersani, 1996). Evan, I belie