I Don't Think This is Theoretical; This is Our Lives.” How Erasure Impacts Health Care for Transgender People

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For people who are transgender, transsexual, or transitioned (trans), access to primary, emergency, and transition-related health care is often problematic. Results from Phase I of the Trans PULSE Project, a community-based research project in
  Features ‘‘I Don’t Think This Is Theoretical;This Is Our Lives’’: How Erasure Impacts HealthCare for Transgender People Greta R. Bauer, PhD, MPHRebecca Hammond, BARobb Travers, PhDMatthias Kaay, MSW, MAKarin M. Hohenadel, BAMichelle Boyce For people who are transgender, transsexual, or transitioned (trans), access to primary, emergency,and transition-related health care is often problem-atic. Results from Phase I of the Trans PULSE Project, a community-based research project in On-tario, Canada, are presented. Based on qualitativedata from focus groups with 85 trans communitymembers, a theoretical framework describing howerasure functions to impact experiences interactingwith the health care system was developed. Two keysites of erasurewere identified:informational erasureand institutional erasure. How these processes work in a mutually reinforcing manner to erase trans indi-viduals and communities and produce a system inwhich a trans patient or client is seen as an anomalyis shown. Thus, the impetus often falls on trans indi-viduals to attempt to remedy systematic deficiencies.The concept of cisnormativity is introduced to aid inexplaining the pervasiveness of trans erasure. Strate-gies for change are identified. (Journal of the Association of Nurses in AIDS Care,20, 348-361 ) Copyright  Ó 2009 Association of  Nurses in AIDS Care  Key words: cisnormativity, erasure, health careaccess, marginalization, social exclusion, trans-gender, transphobia, transsexual T rans is an umbrella term that encompassesadiversegroupofpeoplewhosegenderidentityorex-pressiondivertsfromprevailingsocietalexpectations.Trans includes transsexual, transitioned, transgender, Greta R. Bauer, PhD, MPH, is assistant professor, Depart-ment of Epidemiology and Biostatistics, Schulich School of  Medicine and Dentistry, The University of Western Ontario, London, Ontario, Canada. Rebecca Hammond, BA, is MSccandidate, Department of Community Health and Epidemi-ology,FacultyofMedicine,DalhouiseMedicalSchool,Dal-housie University, Halifax, Nova Scotia, Canada. RobbTravers, PhD, is assistant professor, Department of Psychology, Wilfrid Laurier University, Waterloo, Ontario. Matthias Kaay, MSW, MA, is a therapist, Rainbow ServicesCentre for Addiction and Mental Health, Toronto, Ontario.Karin M. Hohenadel, BA, is MSc candidate, PopulationEpidemiology, Department of Epidemiology and Biostatis-tics,SchulichSchoolofMedicineandDentistry,TheUniver-sity ofWesternOntario,London, Ontario.Michelle Boyceis president, Diversity Training Live, Aylmer, Ontario.  Editors’ note: This article contains graphic language and content. JANAC’s editorial staff is dedicated to preservingthe integrity of the work of all of our authors. In qualitativeresearch, this includes input from participants who arewilling to share their experiences with the researcher and—eventually—with the reader. In this article, we havehonored those individuals by leaving their words intact. JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 20, No. 5, September/October 2009, 348-361doi:10.1016/j.jana.2009.07.004Copyright Ó 2009 Association of Nurses in AIDS Care  and genderqueer people, as well as some two-spiritpeople. The corresponding terms cissexual and cisgender  typically describe nontrans people (seeTable 1).Trans people represent one of the most marginal-ized groups in our society. Numerous needs assess-ments and research studies published to date haveconsistently indicated the numerous and interlockingchallenges that trans people experience in their day-to-day lives (Kenagy, 2005; Namaste, 2000; Sperber,Landers, & Lawrence, 2005; Taylor, 2006). Despiteconsistency of results, little attention has beenfocused on understanding how and why trans peoplecome to experience marginalization in such pervasiveways. Background and Significance Health is a holistic state. Mental, physical,emotional, and social health are all integral to andinteract toward the total experience of health (WorldHealth Organization, 1948). A social determinants of health framework recognizes that the conditions forhealth are shaped by the social and political milieuin which one lives (Raphael, 2004). As an extensionof this approach, risk for HIV can be viewed asa synthesis of both proximal and distal risk factors,and social determinants of health can increasevulnerability to HIVat the community level (Sumar-tojo, 2000). HIV has been shown to disproportion-ately affect marginalized groups (Atrill, Kinniburgh,& Power, 2001), and in Canada, a strong case hasbeen made to understand HIV within social contexts.TheCanadian Public Health Association (2005)noted that ‘‘poverty, homelessness, stigma, addiction,violence, untreated mental health problems, lack of employment opportunities, powerlessness, lack of choice, lack of legal status, and lack of social supportcreate an environment in which HIV and otherillnesses flourish and spread’’ (p. 26).Viewed through a social determinants of healthlens, the existing body of literature clearly indicatesthat trans people frequently face a multiplicity of challenges to their health and well-being. Theseinclude challenges to accessing relevant health careservices (Dewey, 2008; Sperber et al., 2005; Xavier,Hannold, Bradford, & Simmons, 2007). Additionally,access to social services including homeless shelters,addictions services, and sexual assault services isoften fraught with challenges (Cope & Darke, 1999;Nemoto, Operario, Keatley, Nguyen, & Sugano,2005; Sperber et al., 2005). Accessibility and rele-vance issues have also been documented in relationto harm reduction and HIV prevention work (Bockt-ing, Robinson, & Rosser, 1998; Cope & Darke,1999). In their day-to-day lives, trans people oftenexperience direct harassment and discrimination ininstitutional and broader social contexts (Feinberg,2001; Hill, 2003).Trans people frequently encounter barriers tomaintaining a stable income and quality housing(Gapka & Raj, 2003; Namaste, 2000; Xavier et al.,2007). It has also been shown that they experiencedisproportionately highrates of violence, harassment,and discrimination in workplaces, schools, and childwelfare systems (Lombardi, Wilchins, Priesing, &Malouf, 2001; Sperber et al., 2005). Moreover, thereare few jurisdictions where basic human rightsprotections for trans people exist and even fewerwhere they are enforced (Currah & Minter, 2000;Minter & Daley, 2003). Particular subgroups of trans Table 1. Transgender TerminologyTerm Definition Transsexual ‘‘Those who live as members of the sex other than the one they were assigned to at birth.’’ (Serano, 2007, p. 25)Transgender An umbrella term used since the 1990s ‘‘to describe those who defy societal expectations and assumptions regardingfemaleness and maleness; this includes people who are transsexual . , intersex (those who are born witha reproductive or sexual anatomy that does not fit the typical definitions of female or male), and genderqueer(those who identify outside of the male/female binary), as well as those whose gender expression differs from theiranatomical or perceived sex . .’’ (Serano, 2007, p. 25)Cissexual ‘‘People who are not transsexual and who have only ever experienced their subconscious and physical sexes as beingaligned.’’ (Serano, 2007, p. 12)Cisgender ‘‘People who are not transgender.’’ (Serano, 2007, p. 33)Bauer et al. / ‘‘I Don’t Think This Is Theoretical; This Is Our Lives’’ 349  communities including Aboriginal trans people,newcomers, and youth can experience compoundedchallenges because of intersections with other experi-ences of marginalization (Clements, Katz, & Marx,1999; Garofalo, Deleon, Osmer, Doll, & Harper,2006; Reback & Lombardi, 2001).Research has also highlighted the impact of marginalization on the health of trans people (Bockt-ing et al., 1998; Sugano, Nemoto, & Operario, 2006).In particular, high prevalence rates of HIV infectionhave been shown to be common in trans communi-ties. A recent metaanalysis estimated a prevalencerate of 27.7% for trans women in North America(Herbst et al., 2008), and HIV risk and low self-esteem have been shown to be related (Bocktinget al., 1998; Sugano et al., 2006). Moreover, margin-alization can increase the risk of suicide; in one of thelargest studies of trans people to date (  N  5 350),suicidal ideation among trans people was estimatedto be 65% (Xavier et al., 2007).Despite consistent documentation that trans peopleare routinely exposed to direct and indirect experi-ences of discrimination and harassment and are oftenunable to access health and social services, analysesthat have attempted to explain how such marginaliza-tion gets produced have been notably absent. Whenexplanations for the exclusion that trans people expe-rience have been provided, the tendency has been toattribute the marginalization as a consequence of transphobia (i.e., fear or hatred of transgenderism ortranssexuality). Whereas transphobia may be a usefulconcept in understanding the motivations underlyingthe actions of individuals, its use as an explanationhas obscured the more systematic nature of transmarginalization by isolating the particular problemto acts rather than embedding the problem in broadercultural and political contexts. Thus, the pervasive-ness of transphobia to explain trans people’s experi-ences of marginalization has obstructed thedevelopment of analyses that help us to understandthe mechanisms that underlie, sustain, and give riseto the challenges experienced by trans people in theirdaily lives.This article provides one of the first schemas forunderstandingtheprocess throughwhichtrans peoplecome to experience marginalization and vulnerabilityto HIV infection, with a focus specifically on theprocesses that exclude trans people from accessibleand appropriate health services. The concept of erasure, described byNamaste (2000)as ‘‘a definingcondition of how transsexuality is managed in cultureand institutions, a condition that ultimately inscribestranssexuality as impossible’’ (pp. 4-5), is used asa framework. Drawing on data gathered from a seriesof focus groups, the often discriminatory actions andassumptions that occur at individual, organizational,and systemic levels are highlighted. Methods The Trans PULSE Project With a population of approximately 13 million,Ontario is Canada’s most populous province. TransPULSE is an Ontario-wide project that aims tobroadly understand how social exclusion impactsthe health of trans people. The Trans PULSE Inves-tigators Team, with seven trans and three cissexualmembers, is an active partnership between commu-nity members, service providers, and academicresearchers who share a desire to undertake commu-nity-based research that will help to alleviate thesystemic inequities facing trans people in Ontario.Community-based research involves collaborativeefforts to equitably involve partners in addressinga community-relevant research question to improvehealth and eliminate disparities (Community HealthScholars Program, n.d.). Trans PULSE is a mixed-methods study usng both qualitative and quantitativecomponents. Phase I consisted of a set of ‘‘commu-nity soundings,’’ or focus groups, designed to elicitconcerns about a range of health and health careissues among trans people in various Ontariocommunities. Phase II, which is in process, involvesa survey component and uses a respondent-drivensampling method. Phase III will seek qualitativeinput to provide depth of understanding to keysurvey results. The present report draws upon PhaseI data. Data Collection In the summer of 2006, seven community sound-ings were held in the Ontario cities of Toronto,Ottawa, and Guelph (  N  5 85 trans community 350 JANAC  Vol. 20, No. 5, September/October 2009  members, 4 ‘‘allies’’). Promoted through posters andlistserv postings as well as through local supportgroups and community agencies, soundings wereled by trans investigators from the research teamand run as ‘‘trans-only spaces,’’ with the exceptionof one group held for allies and family members.Groups ranged in size from 3 to 27 participants;each participant was provided a $20 honorarium forparticipation. Discussions were semistructured anddesigned to address the following areas to stimulatebroad discussion about health: individual healthconcerns, health care experiences, efforts to maintainpersonal health, health education and resources, therole of communities, and HIV-related risks andservices. The Trans PULSE Investigators Teamdeveloped the questions and parameters for thecommunity soundings.Demographic data were collected via a brief survey before the soundings. The survey wascompleted by 65 (76.5%) of the trans participants.Discussions were recorded, transcribed, and error-checked. Data were managed using NVivo version7 qualitative data management software. Informedconsent was obtained from all participants beforedata collection, and study design and data collectionprocedures were approved by the research ethicsboard at the University of Western Ontario. Participants Trans participants were 85 people age 18 and overwho ranged across all educational levels. Of theparticipants from whom demographic informationwas collected ( n 5 65), income levels were low,with 32 (49.2%) earning less than $20,000 annually.A total of 10 (29.2%) described themselves as unem-ployed or underemployed, and an additional 8(12.3%) reported that they were unable to work.Participants worked in a wide range of occupations.About one third ( n 5 23, 35.4%) were partnered ormarried, and a smaller number ( n 5 10, 15.4%) hadchildren. Participants were born in a range of coun-tries, and 55 (84.6%) were Canadian citizens. Most( n 5 45; 69.2%) had lived in Canada their entirelives, and 14 (21.5%) had lived in the country morethan 10 years. Self-described gender identitiesshowed a broad diversity of identity includingwoman, male-to-female, genderqueer, two-spirit,boy,andbigendered.Participants alsoshowedarangeof sexual orientations including lesbian, gay,pansexual, bisexual, and heterosexual. Data Analysis Analysis of data was undertaken using a groundedtheory approach to allow for the natural emergence of pattern and theory (Glaser, 1992). Open thematiccoding was completed by two trans communitymembers: one investigator and one graduate student.Numerous principles of community-based researchhave guided the work of Trans PULSE. Particularlyimportant was the desire to ensure that trans commu-nity team members felt ownership of the researchprocesses and outcomes and that attention was paidto capacity-building and demystifying researchprocesses (Minkler, 2005). As part of this process,participatory data analysis sessions were conducted.‘‘Mind maps’’ representing key themes (Tattersall,Watts, & Vernon, 2007) were prepared by a transgraduate student during a summer internship withthe project. Discussions were undertaken about themeanings and key themes that emerged from thedata, and the broad theory of erasure outlined inthe Results section of this report was conceptualized.Using the constant comparative method outlined byGlaser and Strauss (1967), confirming and discon-firming evidence was sought in the data to supportthe credibility of theory development. To givepriority to the voices and lived experience of transpeople, their quotes are included verbatim as support-ing data in the results. Results Thematic analysis yielded the following keyconcerns regarding health: income instability,barriers to accessing trans-inclusive health careservices, the lack of relevant and accessible informa-tion, systemic social service barriers, self-esteemand mental health issues, challenges to findinghelp, and relationship and sexual health concerns.These concerns were characterized by pervasiveand diverse experiences of transphobia. Althoughcommunity soundings covered a broad range of topics, much of the discussion focused on Bauer et al. / ‘‘I Don’t Think This Is Theoretical; This Is Our Lives’’ 351  experiences within health care systems and includedthe following difficulties: interacting with physi-cians, nurses, staff, and mental health providers;finding accurate information; and accessing primary,hospital, mental health, and transition-related care.This article focuses specifically on health careconcerns, although the experience of social exclu-sion and the processes of erasure described alsoapply broadly in other contexts.Erasure appeared in two key domains in the anal-ysis: informational systems and institutional policiesand practices. Erasure could be passive or active.Passive erasure included a lack of knowledge of transissues and the assumption that this information wasneither important nor relevant. Active erasure couldinvolve a range of responses from visible discomfortto refusal of services to violent responses that aimedto intimidate or harm. Active and passive erasurewithin these two domains produced systemic barriersto care and served to reinforce the erasure of indi-vidual trans people and, by extension, transcommunities. Informational Erasure Informational erasure encompasses both a lack of knowledge regarding trans people and trans issuesand the assumption that such knowledge does notexist even when it may. It is manifest in researchstudies, curricula, and textbooks and in the informa-tion learned by or readily accessible to health careproviders and policy makers.Health research commonly does not allow foridentification of trans participants or address ques-tions relevant to trans communities. It often errone-ously presumes that all research participants arecissexual, that their partners or family members arecissexual, and that their sex and gender have beenconsistent over the lifetime. Thus, trans people whohave been research participants have been systemati-cally erased, and by extension, trans experience andsubjectivity have been similarly rendered invisible.The social exclusion produced has a cumulativeimpact because trans bodies are not counted or notrecognized. Social exclusion is experiencedprofoundly by individuals. One participant put itfrankly, as follows:I’m one of the dead ones. Remember [this], justbecause you’re TS [transsexual], you’re one of thedead ones.Allof thistime thatI’vesurvived,I’m one of the walking dead because we’re notcounted; we’re not represented anywhere.The lack of research on trans lives and trans issueshas resulted in a dearth of information on health-related topics, including issues related to family prac-tice, mental health, and trans-specific health care,which includes transition-related as well as primaryhealth care concerns. A participant elaborated onthis theme.I think that one of the things that bothers mepersonally is the lack of information on long-term worries healthwise. Here I am, I’ve hadSRS [sex reassignment surgery]. How is it allgoing to work in 40 years? I have no idea. DoI have to worry about breast cancer? Do Ihave to worry about prostate cancer? There’sa few studies, but they are so little that theycan’t really tell us what the heck is going tohappen to us eventually. I think we need thatkind of data. I’d like to ask my doctor ‘‘Well,what should I worry about?’’ and not hear‘‘Well, I have no frickin’ idea.’’For mental health care professionals, informationon trans people exists primarily with regard togender identity disorder as a Diagnostic and Statis-tical Manual of Mental Disorders- (AmericanPsychiatric Association, 2000) classified mentaldisorder. The lack of information on how genderidentity relates or does not relate to mental healthallows provider assumptions to manifest in waysthat erect barriers to care. Although research resultshave shown that transsexual people are no morelikely to suffer from psychopathology than cissexualpeople (Haraldsen & Dahl, 2000), providers mayperceive unrelated mental health issues to stemfrom a person’s gender identity. One participant ex-plained as follows:Another thing is not just the mental in regards toour trans experience, but also sometimes wehave other mental illnesses. So if we’re tryingto get help, some doctors may blame it on thetrans aspect or reality, when in fact there’s anactual illness. 352 JANAC  Vol. 20, No. 5, September/October 2009
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