Features ‘‘I Don’t Think This Is Theoretical; This Is Our Lives’’: How Erasure Impacts Health Care for Transgender People Greta R. Bauer, PhD, MPH Rebecca Hammond, BA Robb Travers, PhD Matthias Kaay, MSW, MA Karin M. Hohenadel, BA Michelle Boyce For people who are transgender, transsexual, or Trans is an umbrella term that encompasses transitioned (trans), access to primary, emergency, a diverse group of people whose gender identity or ex- and transition-related health care is often problem- pression diverts from prevailing societal expectations. atic. Results from Phase I of the Trans PULSE Trans includes transsexual, transitioned, transgender, Project, a community-based research project in On- tario, Canada, are presented. Based on qualitative data from focus groups with 85 trans community Greta R. Bauer, PhD, MPH, is assistant professor, Depart- members, a theoretical framework describing how ment of Epidemiology and Biostatistics, Schulich School of erasure functions to impact experiences interacting Medicine and Dentistry, The University of Western Ontario, London, Ontario, Canada. Rebecca Hammond, BA, is MSc with the health care system was developed. Two key candidate, Department of Community Health and Epidemi- sites of erasure were identified: informational erasure ology, Faculty of Medicine, Dalhouise Medical School, Dal- and institutional erasure. How these processes work housie University, Halifax, Nova Scotia, Canada. Robb in a mutually reinforcing manner to erase trans indi- Travers, PhD, is assistant professor, Department of viduals and communities and produce a system in Psychology, Wilfrid Laurier University, Waterloo, Ontario. which a trans patient or client is seen as an anomaly Matthias Kaay, MSW, MA, is a therapist, Rainbow Services is shown. Thus, the impetus often falls on trans indi- Centre for Addiction and Mental Health, Toronto, Ontario. viduals to attempt to remedy systematic deficiencies. Karin M. Hohenadel, BA, is MSc candidate, Population The concept of cisnormativity is introduced to aid in Epidemiology, Department of Epidemiology and Biostatis- explaining the pervasiveness of trans erasure. Strate- tics, Schulich School of Medicine and Dentistry, The Univer- gies for change are identified. sity of Western Ontario, London, Ontario. Michelle Boyce is president, Diversity Training Live, Aylmer, Ontario. (Journal of the Association of Nurses in AIDS Care, 20, 348-361) Copyright Ó 2009 Association of Editors’ note: This article contains graphic language and Nurses in AIDS Care content. JANAC’s editorial staff is dedicated to preserving the integrity of the work of all of our authors. In qualitative Key words: cisnormativity, erasure, health care research, this includes input from participants who are access, marginalization, social exclusion, trans- willing to share their experiences with the researcher gender, transphobia, transsexual and—eventually—with the reader. In this article, we have honored those individuals by leaving their words intact. JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 20, No. 5, September/October 2009, 348-361 doi:10.1016/j.jana.2009.07.004 Copyright Ó 2009 Association of Nurses in AIDS Care Bauer et al. / ‘‘I Don’t Think This Is Theoretical; This Is Our Lives’’ 349 and genderqueer people, as well as some two-spirit violence, untreated mental health problems, lack of people. The corresponding terms cissexual and employment opportunities, powerlessness, lack of cisgender typically describe nontrans people (see choice, lack of legal status, and lack of social support Table 1). create an environment in which HIV and other Trans people represent one of the most marginal- illnesses flourish and spread’’ (p. 26). ized groups in our society. Numerous needs assess- Viewed through a social determinants of health ments and research studies published to date have lens, the existing body of literature clearly indicates consistently indicated the numerous and interlocking that trans people frequently face a multiplicity of challenges that trans people experience in their day- challenges to their health and well-being. These to-day lives (Kenagy, 2005; Namaste, 2000; Sperber, include challenges to accessing relevant health care Landers, & Lawrence, 2005; Taylor, 2006). Despite services (Dewey, 2008; Sperber et al., 2005; Xavier, consistency of results, little attention has been Hannold, Bradford, & Simmons, 2007). Additionally, focused on understanding how and why trans people access to social services including homeless shelters, come to experience marginalization in such pervasive addictions services, and sexual assault services is ways. often fraught with challenges (Cope & Darke, 1999; Nemoto, Operario, Keatley, Nguyen, & Sugano, 2005; Sperber et al., 2005). Accessibility and rele- Background and Significance vance issues have also been documented in relation to harm reduction and HIV prevention work (Bockt- Health is a holistic state. Mental, physical, ing, Robinson, & Rosser, 1998; Cope & Darke, emotional, and social health are all integral to and 1999). In their day-to-day lives, trans people often interact toward the total experience of health (World experience direct harassment and discrimination in Health Organization, 1948). A social determinants of institutional and broader social contexts (Feinberg, health framework recognizes that the conditions for 2001; Hill, 2003). health are shaped by the social and political milieu Trans people frequently encounter barriers to in which one lives (Raphael, 2004). As an extension maintaining a stable income and quality housing of this approach, risk for HIV can be viewed as (Gapka & Raj, 2003; Namaste, 2000; Xavier et al., a synthesis of both proximal and distal risk factors, 2007). It has also been shown that they experience and social determinants of health can increase disproportionately high rates of violence, harassment, vulnerability to HIV at the community level (Sumar- and discrimination in workplaces, schools, and child tojo, 2000). HIV has been shown to disproportion- welfare systems (Lombardi, Wilchins, Priesing, & ately affect marginalized groups (Atrill, Kinniburgh, Malouf, 2001; Sperber et al., 2005). Moreover, there & Power, 2001), and in Canada, a strong case has are few jurisdictions where basic human rights been made to understand HIV within social contexts. protections for trans people exist and even fewer The Canadian Public Health Association (2005) where they are enforced (Currah & Minter, 2000; noted that ‘‘poverty, homelessness, stigma, addiction, Minter & Daley, 2003). Particular subgroups of trans Table 1. Transgender Terminology Term 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 regarding femaleness and maleness; this includes people who are transsexual., intersex (those who are born with a 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 their anatomical 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 being aligned.’’ (Serano, 2007, p. 12) Cisgender ‘‘People who are not transgender.’’ (Serano, 2007, p. 33) 350 JANAC Vol. 20, No. 5, September/October 2009 communities including Aboriginal trans people, and appropriate health services. The concept of newcomers, and youth can experience compounded erasure, described by Namaste (2000) as ‘‘a defining challenges because of intersections with other experi- condition of how transsexuality is managed in culture ences of marginalization (Clements, Katz, & Marx, and institutions, a condition that ultimately inscribes 1999; Garofalo, Deleon, Osmer, Doll, & Harper, transsexuality as impossible’’ (pp. 4-5), is used as 2006; Reback & Lombardi, 2001). a framework. Drawing on data gathered from a series Research has also highlighted the impact of of focus groups, the often discriminatory actions and marginalization on the health of trans people (Bockt- assumptions that occur at individual, organizational, ing et al., 1998; Sugano, Nemoto, & Operario, 2006). and systemic levels are highlighted. In particular, high prevalence rates of HIV infection have been shown to be common in trans communi- ties. A recent metaanalysis estimated a prevalence Methods rate of 27.7% for trans women in North America (Herbst et al., 2008), and HIV risk and low self- The Trans PULSE Project esteem have been shown to be related (Bockting et al., 1998; Sugano et al., 2006). Moreover, margin- With a population of approximately 13 million, alization can increase the risk of suicide; in one of the Ontario is Canada’s most populous province. Trans largest studies of trans people to date (N 5 350), PULSE is an Ontario-wide project that aims to suicidal ideation among trans people was estimated broadly understand how social exclusion impacts to be 65% (Xavier et al., 2007). the health of trans people. The Trans PULSE Inves- Despite consistent documentation that trans people tigators Team, with seven trans and three cissexual are routinely exposed to direct and indirect experi- members, is an active partnership between commu- ences of discrimination and harassment and are often nity members, service providers, and academic