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Social identity, agency, and the politics of adherence to antiretroviral therapy in HIV/AIDS care Berkhout, Suze Gillian 2010

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         SOCIAL IDENTITY, AGENCY AND THE POLITICS OF ADHERENCE TO ANTIRETROVIRAL THERAPY IN HIV/AIDS CARE   by   SUZE GILLIAN BERKHOUT  B.M.Sc. The University of Western Ontario, 2004    A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF  DOCTOR OF MEDICINE/DOCTOR OF PHILOSOPHY  in  THE FACULTY OF GRADUATE STUDIES   (Experimental Medicine)   THE UNIVERSITY OF BRITISH COLUMBIA  (Vancouver)   May 2010    © Suze Gillian Berkhout, 2010 
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 ABSTRACT   Within Vancouver’s Downtown Eastside community, gendered disparities exist with respect to uptake and continuity of antiretroviral therapy; limited access and adherence to therapy is commonly reported in the medical literature concerning women in the community. These findings are particularly hard to reconcile, as HIV treatment exists amidst a range of neighbourhood health and social support services that are ostensibly accessible to all through a universal health care system. In this dissertation, I examine conventional approaches to facilitating treatment uptake and adherence along with dominant narratives employed to explain treatment challenges faced by women in Downtown Eastside Vancouver.  Bringing together discourse analysis, qualitative interviewing, and participant observation with HIV-positive women and their health care providers I propose an alternate lens with which to examine gender disparities in HIV care.  I argue that discourses of adherence to antiretroviral therapy are suffused with cultural imagery and tropes associated with women at high risk of HIV infection: images of sex work, drug use, homelessness, and mental illness.  Additionally, an individualist, rationalist bias exists within much of the North American literature regarding women’s access and adherence to care; the literature finds points of convergence with larger normative frameworks of liberalism within medical practices. Contrary to a conventional emphasis on psychosocial “barriers” to care, I focus on social interests, institutional authorities, relations of power, and strategies of social control.  These are exerted on, resisted, and internalized by women attempting to negotiate care.  I also suggest how a normative liberal framework underpinning HIV research and care may have the inadvertent consequence of further entrenching images of HIV positive women as deviant, dangerous, and/or irrational.  My reframing issues of access and adherence as matters of negotiation and negative 
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 agency leads me to discuss the ways in which liberal conceptions of autonomous agency are employed within discourses of HIV/AIDS care, structuring health care decision making and possible courses of action.  The arguments I offer endorse a constitutively relational account of the self and autonomy.  A relational account can, I argue, provide insight and guidance concerning adherence to antiretroviral therapy. 
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 TABLE OF CONTENTS   Abstract.............................................................................................................................. ii  Table of Contents ............................................................................................................. iv  List of Abbreviations ..................................................................................................... viii  Acknowledgements .......................................................................................................... ix  Dedication ......................................................................................................................... xi  Introduction: “1.4-Billion has been spent, but to what end?” .......................................1  Stats and Figures: Constructing HIV/AIDS in the Community...............................4  Women, HIV/AIDS, and Barriers to Care ...............................................................7  Some Critical Challenges.......................................................................................10  Rational Actors and Autonomous Agents in Medical Discourse ..........................12  The Medical “Self” ................................................................................................14  About the Dissertation ...........................................................................................17  Chapter One: The Banality of Crisis .............................................................................21  The Conventional Adherence Narrative ................................................................23  A Different Kind of Narrative................................................................................26  The Banality of Crisis: Chapter Overview.............................................................36  Historical Context: Silent Turf Wars and Micropolitics........................................39  The Politics of Health in the Inner City .................................................................50  Intersecting Structures of Thought.........................................................................56  Concluding Remarks..............................................................................................62  Chapter Two: Biomedicine and the Canon of Liberal Humanism .............................63  The Ghost in the Machine: the Rational Self and the Liberal Tradition................67  Rational Agency and the Unification of the Self ...................................................72  
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 Self-Reflection and Transparency as Conditions of Agency.................................76  Liberalism and the Rational Actor Model of Health Behaviour............................78  The Liberal Humanist Self in Practice...................................................................80  Cracks in the Foundation .......................................................................................83  Chapter Three: Studying Subjectivity, Instituting Identity ........................................88  Risky Measures, Deviant Bodies and Pathological Spaces ...................................90  Immutable Identities and Kinds of People.............................................................99  Challenges to the Standard Measures: .................................................................106 Intersubjectivity, Meanings, and Dynamic Tensions  A Way Forward: Understanding, Interpretation, and Critique ............................113  Methodology, Argument, and Claims to Knowledge ..........................................119  Praxis, Ethics, Institutional Review.....................................................................123  Chapter Four: Matters of F/actuality and Matters of Kind ......................................129  Non-Adherence and Failures of Agency..............................................................131  Making a Mess of Things: Adherence in Practice ...............................................135  Cleaning it up: How Messy Data Becomes a Singular Story ..............................140  Taking Apart the Rational Actor Model of Adherence .......................................141  Institutional Mimesis and the Dynamics of Control ............................................166  Concluding Remarks: Partial Perspectives on Adherence...................................170  Chapter Five: Looping Effects and the Construction of Non-Adherence ................173  Images and Oppositions in the Ascription of Identity .........................................176  Overlapping Images .............................................................................................189  Application Error and Ideal Theory.....................................................................191  Oppositional Logic and Social Identity ...............................................................194  Exclusion and Repression in Identity ..................................................................197  
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 Do you Believe in Reality? Constructing Categories and Predicting Outcomes.201  Concluding Remarks: Decentering the Self.........................................................208  Chapter Six: The Contours of Agency in HIV Care...................................................210  Non-Adherence and Negative Agency ................................................................213  Acquiescing to Care: Troubles with the “Rational” Option ................................219  Circuitous Pathways in Health.............................................................................223  Roadblocks to Care or Legitimate Disincentives?...............................................227  Negative Agency and Withdrawal from Care......................................................236  The Liberal Tradition’s Rebuttal .........................................................................239  A Response from the Margins .............................................................................243  Concluding Remarks: Agency, Structure and Conditions of Possibility.............253  Chapter Seven: Reconfiguring Autonomy...................................................................254  Autonomy and the Liberal Self............................................................................255  Motivating a Reconfiguration of Autonomy........................................................259  Notes on Terminology .........................................................................................263  The Relational Self and Feminist Bioethics.........................................................265  A Critique of the Subject .....................................................................................270  Reconfiguring Autonomy Relationally................................................................276  Liberal Philosophy and the Relational Self .........................................................281  What Can Relational Autonomy Achieve?..........................................................284  Autonomy and Relationality in HIV/AIDS Care.................................................289  Social Identity, Agency and the Politics of Adherence: Concluding Remarks ........298  The Politics of Critique........................................................................................300  Universal Rights and the Expansion of ART.......................................................301  Notes ................................................................................................................................304 
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  References .......................................................................................................................340  Appendix 1 (Certificate of Ethics Approval)...............................................................360  Appendix 2 (Methodological Information) ..................................................................362 
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 LIST OF ABBREVIATIONS  AMA  Against Medical Advice  ARV  Antiretroviral  ART  Antiretroviral Therapy  CHC  Community Health Centre  DOT  Directly Observed Therapy  HAART Highly Active Antiretroviral Therapy  FASD  Fetal Alcohol Spectrum Disorder  FSW  Female Sex Worker  IDU  Injection Drug User  IVDU  Intravenous Drug User  MAR  Medication Administration Record  MAT  Maximally Assisted Therapy  MMT  Methadone Maintenance Therapy  MSM  Men Who Have Sex With Men  NNRTI Non-Nucleoside Reverse Transcriptase Inhibitor  RHA  Regional Health Authority  SRO  Single Room Occupancy  VCH  Vancouver Coastal Health  V/RHB Vancouver/Richmond Health Board  
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 ACKNOWLEDGEMENTS   There are many people who have contributed to make this project possible, through their practical, emotional, and intellectual support.  I need first to recognize the women who participated in the research, offering me their time, stories, insights, and feedback as the research moved from a vague notion of health care experiences to a more carefully measured analysis and critique.  Missy and Carly need to be recognized especially, for their contributions to the direction that the analysis eventually took.  For as much as each of the seven women gave, what little they asked in return is hardly of measure.  Their tenacity and grace under the pressures of what would be, to most other people, insurmountable physical and spiritual difficulties, is a testament to their agency and skills as survivors.  Other community members, health care providers, and those who work in the downtown eastside neighbourhood were also generous in their time and patient with me as I scribbled in my little black notebooks.  Without the encouragement and support of Vancouver Native Health Society, the Women’s Night team, and the Downtown Home Care nurses, this project would lack for richness and depth.  Evanna and the “three Susans” need particular acknowledgment and I’d like to especially thank Doreen. When I began the work I was a newbie in more than just the obvious sense—having no experience to speak of with qualitative methodologies, I owe a debt of gratitude to my committee, for their leap of faith, and to the colleagues and mentors who helped me embrace the challenges and gratifications of interpretive, qualitative research.  Cindy Patton, for her coaching (and hand-holding), Dara Culhane and colleagues at UBC and SFU, and of course, Treena and Arn.  Denielle may not agree that she has been a hugely influential mentor and role model, but I would be intellectually and ethically impoverished as a researcher and indeed more generally without her wisdom and friendship.  Cindy, Mark, and Scott have provided endless hours of intellectual and moral support. I’m often not sure where their insights end and my own thoughts begin.  In many ways, it was 
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 Cindy Patton who helped me get the project off the ground.  Mark Tyndall has been particularly generous with his time as a physician as well as a researcher and his ability to connect my theoretical concerns to his practice has been a great contribution.  I am especially grateful for the time and energy that Scott Anderson has given to this project and to me as a graduate student.  It is difficult to articulate how much I have come to depend on his thoughtful insights, easy conversation, unwavering confidence, and integrity as a scholar.  He has thrown me a number of philosophical lifelines when I needed them most and has provided more enrichment than he likely knows.  It has been a privilege and an honour to work with each of these individuals. I would like to acknowledge the support of the Canadian Institutes of Health Research, The Michael Smith Foundation for Health Research, The VCH Research Institute, and Pfizer Canada.  I have also received a tremendous amount of support and encouragement from the University of British Columbia MD/PhD program.  This project was unconventional and full of risks and I thank them deeply for their on-going enthusiasm for my efforts.  Likewise, I owe my appreciation to the Experimental Medicine Department, for their kindness and flexibility, and to the Department of Philosophy, for providing a second home.  I also wish to thank Anita Ho, Stephan Petrina, and Judy Segal for their feedback and encouragement, as well as Carolyn Mcleod, Susan Sherwin, Mary Rawlinson, Francois Baylis, and Lorraine Code, in addition to CSWIP, Feminist Approaches to Bioethics, and the UBC STS group.  Their involvement has been less direct, but they have contributed greatly to my work as a scholar. Along the way, friends and family gave of their time, energy, and consideration. Tim’s thoughtful comments, caffeine offerings, and pep talks were an important part of the successful completion of the project.  Since our undergraduate days, Melissa has been a sounding board and champion of critical thought and this continues to be the case.  I’d like to thank my brother and, most of all, my parents.  They have provided all manner of assistance, which they graciously offer from more than 3000 miles away and at all hours of the day.  My success is also their own. 
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                       For my parents, who have made this possible… 
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 INTRODUCTION “1.4-BILLION HAS BEEN SPENT, BUT TO WHAT END?”  The headline bellows “The Money Pit,” and a map of the area sits atop an allopathic and militaristic depiction of the neighbourhood as “ground zero.”  A column of statistical figures classifies its residents as “poor and uneducated.”  A subheading abruptly states “One Room For the Homeless: $326,484.”  On February 14, 2009, The Globe and Mail launched its report on the public and private funds that have been spent in an attempt to improve Vancouver’s Downtown Eastside neighbourhood, since the signing of the Vancouver Agreement in 2000.  The Vancouver Agreement saw three levels of government make a commitment to address the pressing needs of the inner city community, in light of a rash of drug overdose deaths in the 1990’s and sustained hepatitis C and HIV/AIDS epidemics.1  This is a community that is notorious for its open drug market, its prevalence of HIV/AIDS, and the location as North America’s first public injecting facility. The newspaper’s verdict: The neighbourhood remains a vortex that sucks in junkies, the mentally ill and other desperate souls from across the country…More than $1.4-billion later, the Downtown Eastside is hardly better off.    (The Globe and Mail, 2009)  The investigation concludes that what is possibly most problematic about all the funds funneled into the neighbourhood through the agreement is that nobody has been keeping track of the spending.  One proposed solution: a Downtown Eastside “Czar” who would oversee the rehabilitation of the community and ensure accountability.2 In many ways, the Globe and Mail series is an exemplar of one of the dominant lenses through which Vancouver’s Downtown Eastside is viewed by popular press and wider society. The lead article’s artistic photography and personal narratives of a half-dozen neighbourhood residents belie the underlying populist rhetoric that makes it seem as though the money has been going straight to the pockets of community members, rather than funding policing positions, health care staff, non-profit organizations and the contracting businesses charged with renovating 
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 the crumbling single room occupancy (SRO) hotels in the neighbourhood.  Individuals who staff these positions overwhelmingly live in less maligned neighbourhoods in the metropolitan Vancouver area, their status as beneficiaries of public and private spending not deemed particularly notable. The article questions where the “flood of spending” has gone to, depicting the targets as a “few squalid blocks” and a couple of thousand individuals with the most complex issues, but it inevitably fails to mention years of budgetary cutbacks and loss of housing and social services prior to the Agreement, in this community as well as many others.  And indeed, the most vulnerable individuals are likely to move into downtown eastside Vancouver as affordable housing and social services are reduced elsewhere across the province.3  In addition, the focus on the drug market, problems of addiction, and the newspaper’s determination that the costly drug court has failed as an experiment serves to conflate the neighbourhood with the practices of injection drug use, setting the inner city in opposition to other communities in which drug use occurs.  These other communities remain relatively unrepresented in public discourse, as drug use here exists predominantly within the privacy of peoples’ homes.4 Commonly, the so-called general public fails likewise to see itself as the beneficiaries of social policy and social services.  Roads, water treatment, hospitals, and schools are examples of the invisible infrastructure enabling people to move easily from place to place and carry out their personal projects as though they were making their way on sheer grit, determination, and occasional good fortune.5  In contrast, those who receive social assistance and disability services, like those who partake in programs that divert individuals from receiving jail time for minor drug-related offenses, are seen as living off the public purse and receiving unfair advantages.6 These conceptualizations both reflect and generate the type of language employed within the series of articles: that of “junkies,” the mentally ill, the homeless, and the image of the neighbourhood as “a Third World country stuck in the middle of downtown Vancouver.” 
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 Persuasive rhetoric and images of the community and its residents function to sever it from a fictive ideal populace, supposedly constituted by rational, coherent, drug-free individuals. The notion of “Third World” conditions calls to mind images of global Others; the status of “Other” is most strongly applied to Aboriginal people in the community.  Vancouver has been built up on traditional Coast Salish territory; the Coast Salish who survived the influenza, small pox, and tuberculosis epidemics during first European contact were predominantly relocated to the reserve spaces designated by the Indian Act.  Today, the Downtown Eastside is home to Aboriginal residents from across Canada and the United States, who disproportionately face social and economic disadvantage (Robertson and Culhane 2005, 16; Kelm 1998, xv).  Referring to the heterogeneous grouping as a population and employing terms such as “overrepresentation” silently summons the need for a pastoral/colonial power for the community.7  The suggestion to appoint a “Czar” can be read as mimetic of Canada’s internal colonial relations; a reminder of earlier assimilative goals and the “white man’s burden.”8 My interest in the lens offered by the newspaper’s series is its effectiveness as an analytic prompt; it gestures toward a number of the underlying assumptions and imagistic figurations related to HIV infection and treatment in this inner city community.  One set of concerns that I bring to this work is the influence of pernicious imagery and prejudicial figurations on medical practices, policy, and research; imagery can authorize discriminations and structure moral choices and epistemic projects (Meyers 1994, 53).  Culturally entrenched figurations of socially excluded groups (“the junkie,” “the criminal,” and “the mad”), like those employed by the Globe and Mail series, have a way of becoming fundamental organizing principles (54) that extend well beyond the individual imagination to structures and institutions that shape how people are able to interact with one another and move about in the world.  Just as the neighbourhood is offered up as a microcosm of pathology, transgression, and licentiousness in comparison to the rest of 
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 society, the caricatures who populate the area are held against the image of a “general” public constituted by generic, universal, rational, autonomous agents. STATS AND FIGURES: CONSTRUCTING HIV/AIDS IN THE COMMUNITY The HIV epidemic has been described as running through society’s fissures, exposing underlying systems of social and economic privilege and advantage.  In Canada, as elsewhere, there are disparities in the rates of HIV infection between women and men; infections among women have continued to rise across the country, from 11.3% of infections where sex was reported in the time between 1985 and 1996, to approximately 24% of new infections in 2002 and 27% of new adult infections in 2006 (PHAC 2007).  Disparities in both infection rates and treatment uptake are substantial for Aboriginal persons.9  In 2006, Aboriginal women amongst accounted for nearly half (approximately 48%) of new infections amongst Aboriginal persons; in comparison, women account for 20% of new infections amongst all those identified as non- Aboriginal (PHAC 2007).10 Care should be taken to ensure that one does not read this as suggesting that Aboriginal ethnicity is tantamount to a “risk factor.”  Canada’s colonial history and racialized structuring of disadvantage are manifest in health statistics and outcomes; taking this to indicate something other than structural racism is likewise part of a colonial imaginary.  The disparities are compelling: in 2006, targeted surveillance data in British Columbia demonstrated that Aboriginal women accounted for approximately 36% of new HIV infections amongst women; approximately 9% of the new infections amongst men were Aboriginal men (BC CDC, 2006). The infection rate amongst Aboriginal persons is estimated by the Public Health Agency of Canada to be 2.8 times higher than amongst non-Aboriginal persons.  Aboriginal persons are less likely to receive treatment and amongst those accessing highly active antiretroviral therapy (HAART)11 they face higher rates of mortality and sub-optimal therapy (Wood et al., 2003; Miller et al., 2006; Lima et al., 2006).  Epidemiological investigations of HIV infection rates in 
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 Vancouver typically connect racialized and gendered disparities in HIV infection rates and treatment uptake to differences in frequency of injection drug use, participation in survival sex work, poor mental health, and history of sexual abuse, among other psycho-social determinants of risk.


 In 1997, the Vancouver-Richmond Health Board declared a public emergency in response to reports that HIV infection among Downtown Eastside residents exceeded those in any other part of the “developed” world, with higher prevalence among female injection drug users (IDU) than males.12  Vancouver’s Downtown Eastside is frequently cited as one of Canada’s poorest postal codes;13 poverty, crowded living conditions, drug use, and dependency on survival sex work are visible parts of daily life in an area that has been likened by the press to something out of Dante’s inferno.14  Housing for many residents consists of single room- occupancy (SRO) hotels in the neighbourhood—although government assistance levels for housing and rent rates in the SRO system are at parity, the accommodations within the residential hotels are substandard.  Residents contend with crumbling buildings, infestations, drug dealing, and illegal subletting.  The Downtown Eastside is often described by its residents as a “petri dish,”—it is a decidedly studied space where research honoraria contribute significantly to individuals’ incomes.15  Participants often take part in more than one cohort study, which limits the number of unique individuals represented by the data generated on the neighbourhood. A substantial body of epidemiological literature examining access and adherence to treatment in Vancouver’s Downtown Eastside is derived from four large prospective cohort studies run out of the BC Centre for Excellence in HIV/AIDS [“the Centre”].16 Individuals’ responses to survey questions regarding all manner of behavioural and medical events are linked electronically to the Centre’s Drug Treatment Program, the centrally administered province-wide program through which all individuals accessing antiretroviral therapy (ART) receive their medications free of charge.  Survey questions are similarly coded, such that discussions of risk 
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 behaviours are comparable across cohorts.17  Data from one cross-sectional analysis have been referenced in subsequent analyses of the same cohort as a way of ‘generalizing’ findings.18 Contradictions do exist regarding the significance of socio-demographic variables and risk behaviours on treatment uptake and adherence, but conflicting studies nevertheless drive home similar concluding messages concerning drug users’ needs for structure and surveillance and the community’s need for more research.19 Neighbourhood level data are also of interest to researchers as proxy measures of risk. For instance, one peer-reviewed article specifically examines the DTES neighbourhood as an independent risk factor for HIV infection among injection drug users.  The authors write, “it is possible that the DTES may act not only as an epicenter of drug distribution, but also potentially for the spread of infectious disease,” as well as, “place of residence may act as a proxy for risk behaviours that are often not captured at an individual level in conventional epidemiological studies” (Maas et al., 2007).  In this paper, individual behavioural data from one of the BC Centre for Excellence cohorts (the Vancouver Injection Drug User Survey, VIDUS) is pulled together to investigate an ecological hypothesis, leading to the claim that there is a “need for neighbourhood-specific public health initiatives to mitigate the observed higher risk.” For as valuable as a wider community and public health emphasis might be, epidemiological studies of the Downtown Eastside link together to discursively constitute the “DTES,” as it is often demarcated in journal articles, newspapers and medical charts.20  As depicted in the Globe and Mail series, the four letters have become a handle for “marginalized urban population,” a descriptor often used in reference to both the IDU and the wider Downtown Eastside community.21  The visibility of the drug market and the prevalence of HIV are sufficient to allow the whole of the community to be represented by the practice of injection and the myriad data related to it.  Similarly, women who take part in the IDU studies are also identified through a binary of sex worker/not sex worker22 and tagged as “FSWs,” (female sex 
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 workers) reinforcing an assumption that people can be easily grouped into demographic categories and that women in the community are sex workers, or at least willing to sell sex for the right price.23 WOMEN, HIV/AIDS, AND BARRIERS TO CARE Gender violence, socio-economic inequality, and violations of women’s human rights are reiterated drivers of women’s vulnerability to HIV and lack of treatment access in Vancouver’s inner city.  Women exposed to HIV in the Downtown Eastside are described as being young, involved in so-called “high risk lifestyles” including the use of injection drugs and participation in survival sex work; they commonly face sexual, psychological, and physical forms of violence. Women who receive HIV medications are less likely to remain on treatment over longitudinal follow-up (Miller et al. 2002; Spittal et al. 2002).  Treatment barriers are described in both research and practice as resulting from limited information, minimal self-efficacy, diminished cognitive function (either due to addiction, the effects of fetal alcohol spectrum disorder (FASD), mental illness or the neuropsychiatric complications of HIV infection itself), and street- entrenched lifestyles (Shannon et al. 2005b; Kerr et al. 2004; Alfonso et al. 2006).24  Barriers to adherence to HIV care are described as variable amongst different groups of individuals, but typically boil down to medication factors (e.g. side effects, complexity of regimen), externalities that complicate follow through (e.g. drug use), patient’s mood (e.g. depressed), outcome expectancies and level of support (Alfonso and Toy 2007; Kerr et al. 2004; Chesney et al., 2000; Lima et al., 2007). Statistically though, women in the community do utilize high rates of primary, emergency, community nursing care, and various harm reduction services (Shannon et al. 2005, Kerr et al., 2004, Solomon et al., 1998).  Within community clinics and supportive housing, there are a number of advocates, social workers, and community support workers who are able to assist individual in navigating the ‘system,’ be it healthcare, income assistance, disability 
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 benefits, or otherwise.  Education and health promotion materials regarding HIV risk are frequently seen posted in a number of clinical and social settings; information sessions relating to HIV and HCV in particular are offered at programs such as the Carnegie Centre, WISH, Vancouver Native Health Society, and so on.  Similarly, numerous programs have been developed within the Health Authority to try and address issues around continuity of care and the transition between community clinics and hospital. That said, HIV incidence continues to remain high, while treatment continuity consistently low amongst women in the community.  This discord is particularly challenging to reconcile given the plethora of health and social support services that appear to be widely available, not the least because of a universal health care system.  Likewise, there have been vast improvements in the simplicity and tolerability of HIV treatment.  In light of these factors, we would expect women in the community to be able to do well on therapy – and yet, good clinical outcomes remain elusive. I spent a great deal of time with a small number of women in the community, each of whom used a number of different illicit drugs; some were unstably housed and some were on and off their HIV medications through the study period.  For all of the benefits of HIV treatment, it was extremely difficult for these women to achieve the sorts of health outcomes promised by contemporary medicine. Part of what motivates this project is a desire to understand the sorts of challenges that exist where there ought to have been straightforward treatment success.  In answering this question, this project is critical of research and health policy that suggests that women in the downtown eastside community, especially Aboriginal women, have worse health outcomes and trouble adhering to antiretroviral therapy because they, as drug users, are either irrational, irresponsible, or incompetent.   In order to get at the underlying dynamics of the statistics, I examine the health care experiences of a small group of HIV-positive women, living in the inner city of Vancouver, 
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 Canada.  The significance of the site is three-fold.  First, the inner city is a location where access to treatment is not merely an issue of health insurance coverage and medication costs.  In other settings, the task of disentangling the economics of health from other barriers to care for the urban poor can be Sisyphean in nature. Here, individual medical care is available through a number of publicly funded clinics, run by the Regional Health Authority, or contracted by the Authority to particular agencies or societies.  That said, while barriers are not strictly a matter of finances, economic disparities are deeply connected to health within this setting. Second, as the Globe and Mail report focuses so raptly on, Vancouver is home to what is often called the “world’s largest open drug market,” symbolized by the intersection of Main and Hastings.  Practices of drug injection have driven the HIV epidemic in the community and popular ideas about drug use profoundly shape the experiences of individuals who live there. Finally, as I have begun to detail, the Downtown Eastside is a location where we see reflections of Canada’s colonial history, devastating effects of intergenerational disruption from residential schooling as well as assimilation policies, the province’s history of terra nullius, and a wider lack of recognition of racism in Canada.25 These considerations bring forward a number of major thematic issues within the research.  First, I attempt to address effects of intersecting stereotypes, images, and figurations attached to multiple social identities of the individuals who took part in the project and graciously allowed me to use their life stories in an effort to understand complexities and tensions in adhering to antiretroviral therapy.  Second, it was the application of these images that led me to question uses of classificatory schemas in clinical practice and medical research—IDU, FSW, MSM,26 and so on.  Presumptions of objectivity and neutrality in scientific methods strengthen notions that such categories are merely descriptive and not constitutive of reality. Finally, I focus to a great extent on drug use and images and figurations that women identified as being ascribed to them because of their classification as “addicts.”  Pernicious images and 
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 figurations of excluded social groups have a way of reinforcing one another, as social identities have multiple and dynamically intersecting aspects.  Categorization makes it seem as though there are clean groupings to which one belongs; when the images of one grouping overlap with those of another, the clean borders of the category make it difficult to see how they are interrelated.  But of course they are; categorization may serve to perpetuate systemic forms of disadvantage, while making it increasingly difficult to identify its causes. Although I do not give the same attention to theorizing the way in which categorizing women as Aboriginal plays in their experiences within the health care system, my comments above should make it clear that my emphasis on drug use by no means suggests ethnicity is insignificant, or even a separate issue.  A different study might begin from this social identity and move outward from it, in a manner similar to the methods I employ here.  My own focus on identities associated with drug use is not to say that this is primary or most important—it is merely a starting point. SOME CRITICAL CHALLENGES Epidemiological data relating to HIV/AIDS and its treatment in the Downtown Eastside, along with media depictions of the community, constitute what might be termed a dominant narrative of HIV care for women in the community.  Mental illness, exposure to violence, and uncontrolled addiction are reiterated as the ubiquitous characteristics of the community, as well as the drivers of non-engagement with health services and non-adherence to ART. The “scale up” of HIV treatment—through a proposed set of weakly paternalistic interventions backed by clinical researchers and health policy makers—is buttressed by an emphasis on cognitive challenges for continuity of ART.  Hovering below the surface of dominant narratives of access and adherence to HIV care, are underlying notions of threats to public health, particularly as increasing attention is being drawn to the role of HAART as a means of preventing further transmission of HIV as an effect of reduced community viral load.  Given depictions of HIV 
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 positive individuals in the eastside, treatment programs in the community emphasize a need for daily witnessed ingestions and a linking of methadone maintenance therapy with ART, along with increased outreach of medical services into typically non-clinical spaces within the community. Conventional accounts of access to HIV care in the Downtown Eastside tempt their readers to absorb ideas that co-morbid problems of substance use and HIV infection in the area are a result of limited health programming, rampant untreated mental illness, and individual level “chaos” and deviance, tied to perpetual involvement in an open drug market.  Although I provide a more in-depth analysis of medical literature regarding access and adherence to ART in the following chapter, my initial sketch of dominant conceptualizations of the access/adherence problem will suffice to begin to tease apart the language and implications of this discourse. In contrast to conventional understandings of the disparities in treatment uptake as being problems of lifestyle choices, personal motivation, and pragmatic considerations related to addiction, mental health, and victimization, I propose to add historical and political depth to the statistical discrepancies in rates of infections and enrollment in treatment for women in Vancouver’s inner city.  My own contribution to the plethora of research on HIV/AIDS in the Downtown Eastside is to offer multiple vantage points and competing narratives of HIV care in order to afford glimpses of ways in which engagement in medical institutions and adherence to ART is also an issue deeply connected to axes of social power and privilege. Importantly, I argue that conventional narratives of who requires greater medical interventions and structuring of their health care services and why these individuals are unable to otherwise adhere to medical advice are informed by an instituted social imaginary of rational autonomous agency, widely shared within the early 21st century affluent western world.  This is a loosely integrated system of images, metaphors, tacit assumptions, and ways of engaging with the world that holds instrumental reason, rational action, and autonomous agency as central 
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 features of human beings (Code 2006, 30-34).  The social imaginary finds favour with a normative framework given by liberal humanism.  This framework structures how adherence to antiretroviral therapy and following of medical advice are conceived of within HIV/AIDS research and clinical care, through its connection to a rational actor model and individualist view of the self. RATIONAL ACTORS AND AUTONOMOUS AGENTS IN MEDICAL DISCOURSE Mythologized conceptualizations of rational autonomous agency, given from a tradition of liberal thought, exist in a matrix of practices, policies, procedures, physical, and rhetorical spaces of HIV/AIDS research and care.  Imagistically opposing this idealized rational actor are populist figurations and media representations of the Downtown Eastside neighbourhood and its residents.  These images are also embedded to varying degrees within the medical and research practices that are geared toward identifying, studying, and treating HIV/AIDS in the community. This project investigates the instantiations of the liberal ideals of rationality, universality, and objectivity within biomedical discourses and draws connections between these discourses and the naturalization of patterns of HIV-related pathology associated with non-adherence to ART. “Compliance” has largely fallen out of fashion as it has been argued to denote submission and passivity on the part of patients, suggest disobedience and recalcitrance, and frame issues associated with following medical advice from the perspective of health care providers (Conrad 1985).  “Adherence” is preferred, describing the extent to which patients’ actions accurately follow recommendations given to them from health providers.  If we look at what constitutes non-adherence to ART, the definition of adherence is remarkably similar to that of compliance. Within both clinical practice and biomedical research, non-adherence describes patients who: fail to fill prescriptions, take medications improperly, forget medications, self-adjust their dose, take only part of a regimen, or terminate a regimen (Alfonso and Toy, 2007).  What unifies each of these as acts of non-adherence in HIV/AIDS literature is that a patient’s behaviour fails to 
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 correspond with their health provider’s recommendations, resulting in a failure to have each components of combination therapy enter the body each time it was prescribed to be ingested.27 Even within the current era of shared decision-making and patient-centered care in medicine, it seems that following medical advice just is the rational thing to do.  And for all intents and purposes, there is a good fit between a rational actor model of action and the literature concerning adherence to ART.  Although there are differences between clinical versus research environments where conceptualizations of adherence are operationalized (within clinical settings, a wider set of issues is contended with than only medication ingestion), these wider forms of adherence to medical advice are also conceived of through an instrumentalist style of rational actor models. As a current condition of HIV treatment for many patients, witnessed ingestion of medications is common and directly observed therapy programs are slated to be part of treatment scale-up.28  Given that drug use, mental illness and other factors typically associated with failures of autonomy are depicted as ubiquitous, medical interventions that focus on providing a paternalistic corrective to limited autonomy are unsurprising.  But we can also problematize the grounds upon which these clinical injunctions rest, as I intend to do.  Relationships between populist images, a social imaginary of autonomous agency, and methods of generating adherence data according to risk classifications are fodder for my critique.  The manner by which these disparate issues come together within the medical system may generate the very conditions that are taken as evidence for the necessity of paternalistic interventions. For instance, if we appreciate how a patient’s sense of surveillance and lack of control over their experience with medical care is a problem for long-term adherence and we see that individuals who have been ascribed social identities that conjure up notions of irresponsibility, incompetence, and irrationality are more likely to be subject to surveillance and control measures, we can make a connection between their lack of engagement in long-term adherence 
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 and conditions under which treatment is offered to them as a “choice.”  But making such a connection requires us to grapple with the constructedness of social identity categories and normative frameworks underlying the reasonableness of “choices” that people are given in the health care system.  This is not a straightforward task; it is further troubled by the way in which a refusal to engage in treatment or a withdrawal from health care programs serves to reinforce the cogency of the original pejorative imagery.  The issues here are deep philosophical ones: the “self,” identity, agency, and autonomy.  They will not be easily picked out from survey questionnaires, standardized tests, or validated instruments.  They require a different approach to conceptualizing, studying and interpreting adherence to ART, which I offer here. THE MEDICAL “SELF”   The ethos of contemporary society in the affluent west is arguably a “regime of the self” (Rose 1996, 1).  Methodological individualism informs current political and moral conceptual schemas within North America (and western Europe); the autonomous self is the basis for claims of individual rights as well as both positive and negative liberties; self-identities and the kinds of person we take ourselves to be shape how we conceive of our range of possible actions.  In many ways, this project is an attempt to understand some of the roles that medical institutions have in constructing and attributing identities and how those constructions and attributions have regulative functions.  This sort of concern is familiar territory to medical sociologists and anthropologists.  I confess that little of what I say here will push the boundaries of critical and scholarly work in these fields.  I recognize that I am unable to give an elaborate discussion of the intellectual history of understandings of the self in medical sociology. What I do hope to accomplish, though, is an interrogation of conventional thinking in liberal moral and political philosophy, as well as in medical discourses surrounding HIV/AIDS care, by bringing to bear upon these a number of well-developed analyses of the interrelations of self and medicine from poststructuralist and postmodernist thought in the social sciences and humanities.  In many ways 
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 I am interloping within what would otherwise be the domain of social theory, but I do so in order to speak to various regulative and normative functions of biomedicine and draw connections with philosophical frameworks that operate within its practices.  Keeping this overall aim of the research in mind, I hope it will be somewhat less offensive to scholars in the social sciences that I employ terms such as “the self,” when their own discursive practices would utilize concepts such as “subjectivity” or “subject position.” Concepts such as the latter carry with them linguistic, historical, and political connotations. While cognizant of them, I often leave these connotations unstated or under-theorized, though in a somewhat strategic fashion.  Likewise I hope that readers from within the social sciences are able to recognize that my use of a concept such as “the self” is a pragmatic rhetorical choice so as to enable and enhance a dialogue within contemporary Anglo-American philosophy, which is all too often oblivious to the various issues and concerns of critical thought in the social sciences. The same could be said for my use of “social identity.”  I have tried to apply care in my discussion of “identities,” making explicit for instance, when I refer to a set of ascribed characteristics based on actual or presumed group membership.  I try to avoid giving the impression that I take the notion of “identity” to be a form of self-authored definition that others recognize and reflect back to an individual.  As much as “identity” in this respect has an important theoretical role to play in my analysis, I myself do not employ this understanding of identity as though it were straightforward and unproblematic.  Central to much of my discussion concerning medicine and the “self” are some of the works of Michel Foucault, and in particular, contemporary Foucauldian scholars who apply and extend Foucualt’s concepts of governmentality, biopolitics, disciplinary regimes, and technologies of the self to issues of identity and the self in modern medicine.  While I recognize that much of my use of this work is under-theorized, I hope that scholars will be charitable in their reading, given the purposes of the project.  As Robin Bunton and Alan Petersen write in 
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 their introduction to Foucault: Health and Medicine, Foucault’s own approach crisscrossed disciplinary boundaries in order to make links between previously distinct areas (Bunton and Petersen 1997, 1).  As I say though, I am not offering a Foucauldian analysis of adherence to ART or of the normative elements of current biomedical practices—I am attempting to critique dominant narratives and conventional frameworks in these areas from my position within Anglo- American analytic philosophy; where Foucault’s scholarship is able to contribute to my critique, I draw upon it. This is particularly significant with respect to the place of medicine in fabrications of identities and self-understandings.  David Armstrong describes this aspect of Foucault’s work as embedded in the subtext of Birth of the Clinic (trans. 1973), clarified in Discipline and Punish (trans. 1977), and articulated more explicitly in History of Sexuality (trans. 1978) (Armstrong 1997, 19-27).  The important lessons I take from this intellectual trajectory are: historical and cultural location of medical practices make possible certain ways of seeing, knowing, and being; clinical practices are integral and constituting aspects of individual experience; biomedicine is one of a number of normalizing institutions; and biomedical authority, granted on the basis of having offered explanations of and solutions to various “problems,” is disguised to a great degree by its voluntary uptake on the part of individuals (Armstrong 1997; Foucault 1973, 1978; Petrina 2008; Turner 1997).  With regard to this last consideration, Technologies of the Self (1988) also offers an important theoretical resource that I rely on in my analysis of feminist scholarship of autonomous agency in bioethics. In addition, I draw upon a number of other theoretical/conceptual resources, most notably feminist works in philosophy of science, epistemology, and especially ethics.  Where it is unclear or open for debate as to whether the ontological and epistemological commitments of these diverse bodies of literature might conflict with one another, I have tried to make a case for their use together.  One certainly ought not to go about cherry-picking philosophical views without an 
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 eye to their theoretical commitments, but I do not suppose my interdisciplinary methodologies and analysis to be overly susceptible to this complaint. ABOUT THE DISSERTATION The HIV/AIDS epidemic and the gendered and racialized disparities in long term treatment utilization and outcomes are part of a crisis, but this crisis was not discovered by any one news agency or research body, to be fixed in a one-night forum or through the installment experts who will oversee the supposedly disordered community.  Too often, media depictions (along with policy suggestions based on these) only begin to scrape the surface of a complicated web of issues that surround substance use and HIV care in the inner city.  They have a tendency to reinforce dominant narratives, imaginaries, and explanations of treatment access that do little more than pathologize particular individuals, while failing to examine underlying structural and interpersonal dynamics influencing health care.  Disparities in morbidity and mortality rates for HIV positive people in the Downtown Eastside, in the current day, cannot be seen as isolated from effects of social policy in the preceding decades, nor from gender-based oppression, nor from histories of Euro-Canadian domination. Particular conceptions of disparities in treatment outcomes amongst women in the community have a tendency to mask certain politics of negotiating health within institutional settings of health services.  The qualitative research I have carried out will show how it is within rhetorical and physical spaces of such negotiations that contours of agency are drawn and re- drawn.  By applying tools of feminist philosophical analysis to wider social and historical conditions of women’s engagement with HIV care and the allopathic medical system, I intend to re-set the sights of adherence discourse on the ways in which social interests, institutional authorities, relations of power, and strategies of social control are exerted on, resisted, and internalized by women living in the inner city, as they attempt to navigate the warren of locations in which HIV care occurs.  The stakes here are not simply an alternate conceptualization of 
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 gendered disparities in HIV treatment and adherence to therapy—if my analysis is on target, my refutation of idealizations of rational agency and dominant tropes of deviance and transgression may provide discursive tools to open further spaces of options and conditions of possibility for HIV positive women in Vancouver’s inner city. On a different level, the research is also about trying to challenge conventional methods as well as the scope of subject material in bioethics.  Feminist thought in this field has drawn attention to chasms between abstract principles and constructs of the liberal philosophical tradition that are employed within dramatic case-based scenarios of life and death and material, routine, and embodied ways in which health care actually occurs (Lindeman Nelson 2000; Shildrick 2008).  Additionally, there has been recent movement amongst feminists working in bioethics toward taking seriously analyses of critical cultural studies, poststructuralist, and postmodernist thought,29 which prioritize the quotidian, utilizing tensions and contradictions of daily lived experience as an entry point into theorizing about concepts such as agency.  To my mind, these latter insights have not been adequately carried through to ethical thought in a vast array of health-related discourses, including public health.30  Nevertheless, there may exist an affiliation for one another, given that each shares concerns about material conditions as they are lived by individuals marked as different.  In an effort to theorize this kind of potential affiliation, I discuss further on how HIV care in Vancouver’s inner city sits at the intersection of individual biomedicine and population health and use the work as a whole to offer an analysis of ethical considerations within this intersection. In Chapter One, I juxtapose a dominant or conventional narrative of the history of the HIV/AIDS epidemic and current challenges relating to treatment access in the Downtown Eastside community with narratives offered to me from physicians, nurses, researchers and importantly, women living with HIV/AIDS.  These situated, embedded stories of HIV/AIDS in the community expose some of the places where a dominant narrative makes broad strokes and 
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 general claims, which sweep away particularity and, I argue, reinforce the stereotypical thinking of the community.  In addition, I give a more detailed historical and political context to the epidemic, in order to motivate the trajectory of my analysis and gesture toward ways in which these empirical and philosophical issues hang together.  I begin to outline my argument that standards and ideals of liberalism, which operate within biomedical knowledge and practices, function as an invisible normative scaffolding that rationalizes treatment options and understandings of those who attempt to engage in HIV care, structuring possibilities for women’s agency. In Chapter Two I give a discussion of liberal humanism and its presuppositions regarding agency and “the self,” in order to demonstrate how these ideals are embedded in conventional ways of thinking about adherence to ART. I explore this further in Chapter Three, through my examination of the conventional adherence research practices in epidemiology—asking and answering what sort of knowledge these practices are able to construct around the phenomenon of adherence to ART.  I argue that conventional research discourses construct non-adherent patients as a social “kind.”  In addition, I offer to the reader my own methods of study and suggest how these might bring to light some lesser-known, hidden, and elusive aspects of adherence. With respect to HIV/AIDS discourses and adherence to ART in Vancouver’s inner city, medical research and practice are interrelated.  In Chapter Four, I return to an examination of the medical system and multiple and various ways that adherence is understood in it, depending on the interests, purposes and rhetorical spaces of those who employ the concept.  But this leads me to question why, given the diversity of objects and practices that make up “adherence,” there is a dominant narrative; the answer I offer implicates the normative scaffolding of rational actors and rational autonomous agency.  In Chapter Five I take this body of thought as the foundation for the argument that social identities shape, and are shaped by, medical discourse and practices of 
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 HIV care and with the qualitative data of 15 months of participant observation and numerous interview with patients, health care providers and researchers in the community, I offer an alternate view of non-adherence to ART. This alternate view pushes against the taken-for-grantedness of liberal understandings of autonomous agency and the self.  Chapter Six explores this more carefully, taking non-adherence to be a mode of agency that exists in relation to normative standards of liberalism operating in biomedicine.  This discussion leads me to suggest in that the use of the term “agency” to designate a kind of power or capacity requires an ontologically relational, rather than individual, understanding of autonomous agency and of the self.  In Chapter Seven, I examine relational accounts of autonomy and use a feminist (relational) reconfiguration of autonomy to mark out a number of issues with respect to adherence and medical care that feminist bioethics ought to grapple with. To conclude, I return to the issue of the scaling up treatment in Downtown Eastside Vancouver, which is promoted both as sound clinical practice and as a means of preventing new infections.  As questions regarding the logistics of treatment in the community continue to be investigated and proclamations of rights, ethics, and scientific evidence given, there is a pressing need for researchers and policy makers to pay attention to those who are left behind and left uncounted by the conventional approaches to studying adherence to ART.  This requires a robust critique of the normative frameworks upon which medical research, clinical practice, and health policy function. …blind men such as we are in these days have only the choice between surrender and adventure.  And yet we cannot avoid the duty of determining here and now the attitude to adopt with regard to the present situation. That is why, until we have—if indeed, such a thing is possible—taken to pieces the social mechanism, it is permissible perhaps to try and outline its principles; provided it be clearly understood that such as rough sketch rules out any kind of categorical assertion and aims solely at submitting a few ideas, by way of hypotheses, to the critical examination of honest people.  (Simone Weil 1955, trans. 1958, 58-59) 
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 CHAPTER ONE THE BANALITY OF CRISIS   I heard about Carly∗ before I met her.  I had begun to carry out research at one of the community clinics that provided care to individuals in the Downtown Eastside community and it was here that her name was mentioned.  She was off of her medications again, though still participating in an adherence intervention study and receiving the weekly honorarium that was meant to be tied to her following through with therapy.  We met in person in January 2008, during one of her hospital stays and seemed to get along well.  Perhaps she simply needed someone to talk to.  At any rate, we began to carry out life history interviews in March 2008. Over the course of my research within two of the community clinics that provide care to individuals living in the Downtown Eastside, and then later carrying out aspects of the qualitative research study with Carly herself, it struck me that, on a good day, she would be described by health care providers, social workers, and other staff as being “feisty”; alternately, she might be called “a handful,” and once (to me, out of her earshot) “a piece of work.” More pejorative descriptions would come at times when Carly was frustrated by the clinic and hospital staff she encountered, as she rarely hesitated to let them know this, sometimes to her detriment.  On more than one occasion, I was with her when a warning was issued, that she needed to start behaving, or she would be asked to leave.  Her long-time partner would likewise admonish her when she would loudly criticize the long waits, perceived favoritism in clinical settings, and what she took to be unfair or disrespectful treatment. “Cut it out,” he once said, “or you’re not going to get in [to see the doctor] at all.”  His comments echo the 
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