Pathological, Disabled, Transgender:The Ethics, History, Laws, and Contradictions in Models that Best Serve Transgender Rights
This article addresses the precarious place of transgender and gender non-cis persons in relation to their discrimination-protections in recent legal, medical, and ethical policies in the United States. At present, there exists a contradiction such that trans persons are considered "pathological" enough that they are included in the latest iteration of the American Psychiatric Association's Diagnostic and Statistical Manual (DSM-V) as "gender dysphoric," but they are not included in the category of "disabled" under the Americans with Disabilities Act (ADA). As such, trans persons in America are subject to the stigma of pathology (albeit with medical treatment) without the full protections of the ADA. By contrast, transgender and non-cis-gender Americans find their queer cohorts who are HIV-positive to be fully protected by the ADA. We ask whether transgender and non-cis-gender persons should embrace their (already pathologized) personhood as a disability. Sometimes "choosing disability" affords more rights than it deploys stigma.
In an October 2014 front-page story in the New York Times, multiple cultural critics, professors, and lesbian/gay/bisexual/trans/queer (LGBTQ) activists weighed in on the topic of gender-specific forms of federally sanctioned identification, particularly focusing on birth certificates (Rosenblum et al. 2014). As Ron Rosenbaum has recently explained, contemporary science tells us that a sex binary does not exist (2003). In fact, multiple factors, such as physical appearance, DNA analysis, and hormone production create a complicated spectrum of non-binary and intersecting sexual identities. Forcing people to prescribe to this binary from birth results in violence, ranging from genital mutilation in infants to enforcing sex and gender stereotypes in a world where the idea of "one [End Page 249] true sex" and the concept of gender roles are less and less supported by science and psychology.
In arguing to preserve categories of sex difference, law professor Linda McClain points out that the category of sex allows us to identify and therefore, to help, people who are discriminated against due to their sex. She specifically gives striking statistics about disparities of sexual violence and relationship violence in women as compared to men (McClain 2014). Women and Gender studies professor Susan Stryker, however, believes that male-female distinctions actually allow us to identify populations that are discriminated against, allowing us to demarcate marginalized groups and those who do not have best access to employment, marriage, and other social services (2008). This question of access is especially pronounced for those who identify as transgender.
Amidst ever growing headlines, cultural debates, and the greater visibility (and sometimes celebrity) of trans individuals, transgender and gender-non-cis1 issues have become increasingly prominent, as has the understanding that gender and sex are differing and complicated concepts. This article addresses the precarious place of transgender and gender non-cis persons in relation to their discrimination-protections in recent legal, medical, and ethical policies in the United States. At present, there exists a contradiction such that transgender and gender non-cis persons (according to recent revisions to American medical and legal policies) are considered "pathological" enough to be included in the latest iteration of the American Psychiatric Association's Diagnostic and Statistical Manual (DSM-V) as "gender dysphoric" (a terminological revision from DSM-IV's "gender identity disorder"); but they are not included in the category of "disabled" under the Americans with Disabilities Act (ADA). Over the course of this essay we argue against this contradiction. Initially, we discuss the history of two major discrimination protections in this country: Title VII of the Civil Rights Act of 1964 and the Americans with Disabilities Act of 1990. Next, we discuss transgender terminology and examine whether a discussion of the role of gender or sex identity on public documentation might serve as a literal, textual manifestation of the stakes of ADA's current and potential reaches. We show that transgender persons bear the stigma of pathology and other harms of disclosing gender but also the rewards of disclosure in order to access medical care and other necessary protections. Finally, we argue that transgender persons deserve workplace protections under the ADA, even as they are not presently included in that federal legislation. In short, at present, trans persons warrant pathology [End Page 250] to inconsistent degrees and with disadvantageous consequences. While the inclusion of trans identity in the DSM invites the kind of stigma that often accompanies mental health diagnoses, such inclusion also has the contrary side effect of legitimizing the category of trans with tangible, professional approval, and by extension, safeguarding financial and legal protections. Ironically, these are the exact functions of the ADA, which continues to leave trans persons out in the cold.
In turn, adding a new approach to this ethical debate, we examine the current status of these legal debates by fusing them with scholastic debates in trans studies, disability studies, and the burgeoning field of queer bioethics. Ultimately, we argue for a most informed policy to include transgender persons under the ADA such that the staggered intellectual inputs on the topic from legal, queer, disability, and bioethics scholars (roughly a decade apart each) might be best unified to resolve a long-overdue inconsistency of how federal task forces such as the ADA and the Equal Employment Opportunities Commission (EEOC) have felt compelled to include trans individuals as a part of their "duty to serve." Accordingly, however stigmatizing, perhaps self-identifying as a trans/disabled person might be a rewarding strategy for non-cis-gender individuals under the current ADA standards?
As influential institutions of various persuasions—from the Institute of Medicine (IOM 2011) to the Human Rights Campaign (HRC 2015)—press for more expansive studies of the protections of the trans community in civil and medical jurisdictions, it feels an offensive relic that trans persons lack consistent protections from the EEOC and the ADA. As a valuable, new contribution to the long-standing debates in legal, disability, and trans scholarship, we seek to unify these scholarly voices within the discipline of bioethics and the burgeoning field of queer bioethics. Oftentimes, the most productive scholarship is that which fosters discursive bridges across methodological and disciplinary divides. The inconsistent federal discrimination-protections of trans persons between the EEOC and the ADA strikes us as an injustice not just of competing federal mandates, but also one that has been made possible because of the lack of a fusion of robust scholarship in the area—heretofore very well addressed, but not yet under the banner of "bioethics." Oftentimes, an inventory of the context and collaboration of scholarly insights on justice is as just important as the insights themselves. The inconsistency in various federal protections for trans persons results from this lack of a cross-methodological inventory—with the feeling of justice for trans persons being left in the wake. [End Page 251]
1. ORIGIN STORIES AND DISCRIMINATION PROTECTIONS
The EEOC of 1965 and the ADA of 1990
The Civil Rights Act of 1964 was a landmark piece of federal legislation that outlawed discrimination based on race, color, religion, sex, or national origin. The fourth of these initial five categories has created the enduring dilemma for trans persons. What counts as "sex"? Because Title VII established the Equal Employment Opportunity Commission of 1965, which consisted of five presidential appointees charged with the task of enforcing laws that combat workplace discrimination, it initially protected employees from the five categories described above, as well as discrimination based on association with a person from one of the five categories described above, such as discrimination against a white person in an interracial marriage. Specially, Title VII states that:
It shall be an unlawful employment practice for an employer …
–. To fail or refuse to hire or to discharge any individual;
–. To limit, segregate, or classify his employees in any way which would deprive or tend to deprive any individual of employment opportunities;
–. Or otherwise to discriminate against any individual with respect to his compensation, terms, conditions, or privileges of employment. (ADEA 1967)
Since 1965, protections for many additional groups have been legislated, including protections against discrimination based on age, disability, pregnancy, and genetic information. While the EEOC is charged with protecting many of these groups, the elasticity of the EEOC's jurisdiction has both expanded and contracted multiple times in the ensuing decades. Further expansions have included the following: age discrimination was outlawed in in the Age Discrimination in Employment Act (ADEA) in 1967; pregnancy discrimination was outlawed in the Pregnancy Discrimination Act (PDA) in 1978; and in 2008, the Genetic Information Nondiscrimination Act (GINA) outlawed discrimination based on a person's genetics. Amidst these milestones, when the Equal Employment Opportunity Act passed in 1972, it increased the role and responsibility of federal protections in ways that were meant to challenge inconsistencies like those currently in place for trans persons. By seeking to integrate federal, state, and local governments, (and by extension publically funded educational institutions), the EEOC experienced litigious authority to back up administrative rulings—increasing the supposed efficiency, celerity, legitimacy, and uniformity of school, workplace, and public protections of [End Page 252] marginalized populations. Nevertheless, viable and visible protections of pathologized LGTBQ persons and communities in the US have remained historically some of the least protected categories (IOM 2011).
And yet, there are two recent expansions of the EEOC's mandate that prevent discrimination based on gender identity and sexual orientation—both of which are most relevant to this paper and more controversial. Though Title VII of the Civil Rights Act of 1964 does not explicitly include LGBT subpopulations in its list of protected bases, the EEOC, consistent with case law from the Supreme Court and other courts, has recently interpreted (and un-interpreted, and re-interpreted again) the statute's sex discrimination provision as including the prohibition of discrimination against employees on the basis of gender identity (2012) and on sexual orientation (2015). Notably, in 1965, the EEOC ignored sex discrimination complaints and a director of the EEOC called the inclusion of a protection of women "a fluke" (Spitzer 1981). Now, not only is sex discrimination against women taken very seriously by the EEOC, but it is also the category used to protect LGB and transgender persons (National Center for Transgender Equality 2016).
While the domain of the EEOC was expanding as new legislation passed, both in terms of authority and number of subpopulations protected, the legislation leading up to the ADA of 1990 was also being set in motion. Compared to Title VII of the Civil Rights Act of 1964, the ADA is a more recent piece of legislation that offers similar protections to the subpopulation of disabled people. The road to the ADA began with the H.R. 8070 Rehabilitation Act (Rehab Act), signed by President Richard Nixon in 1973, which banned discrimination based on disability in the federal workforce, and was limited to protecting people who worked at organizations or agencies that received federal funds. However, because of limitations on the scope of the Health, Education and Welfare department (HEW), this legislation was difficult to enforce and therefore not especially effective on a practical level.
Soon after, 1976 saw the arrival of the American Coalition of Citizens with Disabilities (ACCD), a national disability rights organization governed by people with disabilities. While the ACCD began as a volunteer mobilization effort of disability activists, within a few years it received grant funding from HEW and quickly grew as disability rights were becoming a larger issue on the stage of national politics. A cascade of disability-related calls and advancements followed in the ensuing decade: in 1979, UC Santa Cruz started creating academic accommodations for disabled [End Page 253] persons; by 1988, a Congressional committee was formed to investigate the status of the disabled in educational and labor settings. Building on this period of increased social and political awareness about discrimination against persons with disabilities, in 1990, the ACCD led sit-ins in ten cities, which ultimately contributed to the creation of the ADA in the same year (National Council on Disability 2010). Accordingly, the ADA outlawed discrimination against persons with disabilities by expanding Section 504 of the Rehab Act to also apply to the private sector (Rehab Act 1973).
The ADA defines disability in the following excerpt from Section 12102 of the original document:
The term "disability" means, with respect to an individual
(A). a physical or mental impairment that substantially limits one or more major life activities of such individual;
(B). a record of such an impairment; or
(C). being regarded as having such an impairment. (ADA 1990)
Unlike Title VII of the Civil Rights Act, the ADA sets a higher bar for workplace requirements by constraining accessibility definitions such that "reasonable accommodations" be provided to all disabled employees. Of note, the right to transportation was highly contentious at that time, and the ADA also legislated a requirement for access to public transportation. With the creation of the ADA and the vast increase in legislated protections for disabled persons, the ACCD facilitated projects with two main audiences: (1) for civic and educational officials to understand better their obligations to the disabled; and (2) for people with disabilities to understand better their own protections.2 Both of these audience-specific goals remain vital today in terms of general, federal transgender protections and potential ADA-related trans protections more specifically.
2. LITERAL RENDERINGS OF HARMFUL RESTRICTIONS
Case Example: Trans Persons Changing Gender on Public Documentation
We are currently in the midst of an unrivaled moment of transgender and gender non-conforming visibility. In 2015, President Barack Obama was the first Executive to use the word "transgender" and address the trans community in his State of the Union Address that year. In June 2011, the Human Rights Council adopted resolution 17/19, which commissioned a study of laws and practices that discriminate against people based on gender identity and sexual orientation around the world, with the purpose [End Page 254] of constructing laws to end this violence at future meetings (Kritz 2014). On September 2014, the Human Rights Council adopted resolution 27/32, which expressed grave concerns about the state of violence against individuals based on sexual orientation and gender identity around the world, and requested further research and discussion on good practices (FORGE 2011). Perhaps most notably, in recent American federal policies on trans health—and robustly covered in LGBTQ media—83rd U.S. Attorney General Loretta Lynch, under the previous Obama Administration, made the now famous statement to trans Americans: "We see you; we stand with you" (Brownworth 2016). And yet, we are also in the midst of a new era in which federal protections for trans individuals are facing innumerable roll-forwards and roll-backs. For example, since the last presidential election, President Donald Trump's administration has called for the rescinding of protections for transgender students in public schools in late February 2017 (de Vogue, Mallonee and Grinberg 2017). By contrast, just a handful of weeks later in early April 2017, Federal Judge Diane Wood wrote for the 7th Circuit Court of Appeals (pushing the definition of that initial EEOC category of "sex" to include LGBT persons) that "discrimination on the basis of sexual orientation is a form of sex discrimination" (de Vogue 2017). The elasticity of the EEOC, the ADA, and federal mandates, like all things elastic, bends in both directions.
Given the complexities of sex and gender—and the potential for difficult categorization—we might ask why binary sex or gender is often required on public documents. In many cases, the reason is simple precedent. Some institutions and jurisdictions have recently stopped asking individuals to designate their gender status(es) at all. But might the contentious issue of gender identification on public documentation be a literal example of how civil legitimacy comes from real and tangible means? Is an identification card just the individualized species of a wider-reaching document like the ADA? Invoking the comments of former U.S. Attorney General Lynch: Who counts? Who's seen? Who's stood with?
Internationally, countries have vastly differing policies on how transgender people can change their gender designation to a preferred gender identity on public identification. For example, 23 states in Europe require sterilization before the recognition of preferred gender identity (National Center for Transgender Equality 2017). Japan does not allow legal gender recognition for transgender individuals who are married or have children under 19. Other benchmarks include requiring persons to wear the typical clothing and hair of their preferred gender for months [End Page 255] to years. On the other end of the spectrum, Argentina and Nepal have relatively low thresholds (Human Rights Council 2015). In 2012, Argentina became the first country to prohibit requesting information about or proof of medical care and to allow complete self-determination (Kritz 2014; TimesUnion 2011). In Nepal, all documents grant individuals the right to self identify as male, female, or third gender (National Center for Transgender Equality 2017).
Identifying documents such as passports, social security cards, and birth certificates continue to be contentious battlegrounds for trans persons—often rendering both literal and textual the comparable contradictory standards of the EEOC and ADA in terms of trans legitimacy (Human Rights Campaign 2015). Multiple examples suggest that a genderless or sexless approach to documentation is a possible solution to discrimination. Both domestic and international examples in the past few years range from the de-sexing of transportation passes for ride-goers on the Southeast Pennsylvania Transit Authority (SEPTA) in Philadelphia (McCrone 2013) to recent pushes in Canadian British Columbia to remove gender from all public documents (Shaw 2015). And yet, as previously stated, the articulation of one's gender identity on public documentation is quite often the premiere vehicle by which governmental rights and protections extend themselves. Looking at the tendency of trans persons to embrace public documentation as a "hand raising" barometer of wanting to be counted by federal, municipal, and other civil authorities, roughly two-thirds of US trans individuals have undertaken some form of ID revision. A recent study looking at transgender persons in the U.S. found that 21% had updated all of their identifying documents, 46% had updated some of their identifying documents, and 33% had updated none of their identifying documents (Human Rights Campaign 2015; TimesUnion 2011). Of course, there are undeniable degrees to which gate-keeping mechanisms such as paperwork literacy, access to testimonials (legal, medical, and otherwise), and financial situations influence these numbers drastically—and especially along class and socioeconomic lines. For example, from 1992–2010, updating a U.S. passport required proof of sex reassignment surgery (SRS) (National Center for Transgender Equality 2017). By 2010, a physician validating sufficient clinical treatment—not necessarily SRS—was enough evidence (TGEU 2015). In 2011, changing gender on a U.S. passport only required a physician's letter if the documents submitted reflected an incorrect gender previously assigned. Out of transgender persons surveyed, 43% who had undergone SRS changed their passport to their preferred gender; while 5% of individuals who had not [End Page 256] undergone surgery changed the gender on their passports (National Center for Transgender Equality 2016; Human Rights Council 2015).
In a unique scenario, U.S. social security cards do not indicate gender, but the Social Security Administration (SSA) records do. To change these records, transgender persons must prove that they have "completed" SRS. These changes have been allowed in 48% of people who have undergone SRS and applied for a change. The change has also been allowed for 30% of transgender females and 16% of transgender males, and both the low percentages and gender differential are striking. Changes were denied in 7–22% of individuals, and many transgender individuals, including 37% of persons who have undergone SRS, did not attempt to change their SSA records (National Center for Transgender Equality 2017). The process of changing gender on other public documentation in the U.S.—including driver's licenses and birth certificates—varies significantly from state to state. 22 states currently require a physician verifying gender identity (with no clinical treatment required) to change gender on a driver's license; 18 states require a physician verifying clinical treatment. Other states have significantly higher thresholds (such as a name change with the SSA or a court order certifying the change) whilst others have significantly lower thresholds (such as showing a birth certificate, or no specified thresholds at all) (National Center for Transgender Equality 2017).
The benchmark for changing a birth certificate ranges from physician's approval to not being allowed, which is the case in five states. If the most common threshold is requiring SRS, the majority of transgender persons do not attempt this process, but of those who do, the most successful group was transgender woman who had undergone SRS at 40%, and the least successful group was transgender woman who had not undergone SRS, of which 75% were denied. In addition and perhaps predictably, there are also racial trends of populations who were successful and unsuccessful with this process, with white people having relatively more successes and relatively less denials. Native American people were the most likely not to attempt (67%) and the least likely to be successful (7%), while black people were the most likely to be denied (22%) (National Center for Transgender Equality 2017).
By comparison, the process of changing one's legal name, a deeply symbolic moment in the life of many transgender persons, also varies by state. Many require only submitting a petition to the court, though the most common threshold is held by 17 states who require publishing a legal notice of the name change in a publication, generally for a fee. These 17 [End Page 257] states allow publishing with safety precautions. Other states, however, do not allow for safety precautions and require publishing multiple times, with eight states requiring publishing more than five times (National Center for Transgender Equality 2017). Requirements to publically publish one's revised name force trans individuals to inform their wider communities that they are trans, which can be stigmatizing and potentially dangerous (Transgender Law Center 2013; ACLU 2015). Given the arbitrary, complicated, and potentially expensive processes of legally changing documents, the ability to have reliable and consistent federal protection across the EEOC and the ADA is not only symbolically important and meaningful to transgender persons, but also a step towards receiving necessary, tangible protections. If public documentation affords a means for trans persons to access civil legitimacy and cultural visibility in the eyes of the law, these count for naught when there are not the prominent and consistent statutes to enforce such protections—from the driver's license to the EEOC; from the birth certificate to the ADA; and beyond.
3. A NEED FOR PROTECTION, THE LEGACY OF PATHOLOGY
Historical Reflections on the Precarious Position of Trans Persons in American Medico-Legal Discourse
While there are roughly 700,000–1.5 million transgender people in America (TimesUnion 2011; Ford 2016)—and that number might seem like a large one—trans persons are often rendered less visible and less protected according to most statistical models. If it is undeniable that trans persons are more discriminated against than their cis-gender counterparts, we can also conclude that transgender persons deserve the three pillars of safety, access, and respectful care. So, let's look at the numbers in these three categories.
Firstly, in terms of safety, 40% of transgender respondents to a study from the Center of Transgender Equality who presented gender incongruent identification reported harassment, and 15% were asked to leave an establishment. An even higher percentage, 47%, of gender non-conforming respondents reported harassment (FORGE 2011). Lastly, 3% reported being assaulted or attacked, and looking at subpopulations, 9% of African American and Latino/a respondents reported being assaulted or attacked, which are both notably and frighteningly high numbers (TimesUnion 2011; Human Rights Campaign 2015).
Secondly, transgender persons also deserve access to healthcare, housing (such as shelters and housing loan benefits), education, voting, and [End Page 258] employment. Both existing as a transgender person and having gender incongruent identification can prevent access to services; and often there are bureaucratic and expensive processes of changing identification that create clear barriers.
Thirdly, transgender persons deserve respectful care. According to the same study from the Center of Transgender Equality, a striking 41% of transgender or gender non-conforming people had attempted suicide (FORGE 2011). Of transgender adolescents in high school, 78% reported sexual harassment, 35% reported physical assault, and 12% reported sexual violence (Grant et al. 2013). While these statistics signify a serious lack of respect for transgender persons in major public institutions (Open Society Foundations 2014), they pale in comparison to the demographic that, in 2016, more murders of transgender persons in the US have been documented than in any previous year, reflecting a continued lack of respect for transgender persons despite recent steps forward (Human Rights Campaign 2016a).
On one level, transgender persons might wish that society did not care so much about their gender identity and their sex characteristics, such that they would not be subjected to the astounding levels of discrimination and harassment previously mentioned. Transgender persons, however, are regularly asked to pathologize themselves as a necessary step towards safety, access to services, and respectful care. Having said this, the DSM has taken steps to alleviate stigma as applied to trans subjectivity. Trans persons are now diagnosed with "gender dysphoria" in DSM-V (2013)—a terminological revision from the previous term "gender identity disorder." Getting the name right matters. Likewise, "gender dysphoria" was situated out of the sex disorder category and into a category of its own in an effort to reduce stigma. The American Psychiatric Association even explicitly states in DSM-V that, "gender nonconformity is not in itself a mental disorder. The critical element of gender dysphoria is the presence of clinically significant distress associated with the condition" (2013). A short-list of best provisions for those revising the DSM and other medical documentation should be: Do we have the name right? Do we have the definition right? Is it in the right place in the book? Should it be in the book at all? The histories of trans, homosexual, and other LGBT categories in the DSM reveal the sensitivities of these four questions in demonstrable and problematic ways.
In stark contrast to working on creating a more accurate place for trans identities in the DSM, LGB persons historically fought to be jettisoned [End Page 259] from the DSM because they wanted to be removed from medical discourses attached to pathology (Wahlert 2012). In 1973, when homosexuality was removed from the DSM, homosexual persons and communities largely rejoiced and embraced this as a major milestone of the gay civil rights movement that was accelerated in the late-1960s. Section 12211 of the ADA explicitly excludes homosexuality and bisexuality from protection because they "are not impairments," evidence that homosexuality is no longer considered a pathology both inside and outside of the medical community (Spitzer 1981). Therapies to cure homosexuality, such as gay conversion therapy, are now understood to be harmful, cruel, and often traumatic—particularly as applied to non-autonomous minors (Wahlert 2013).
Unlike LGB persons, transgender persons regularly want and need to be included in medical diagnostic literature because they need access to hormones or other counseling and care that are inaccessible without such textual support. Despite not wanting to be considered disabled or pathologized, trans individuals often find themselves compelled to be diagnostically observed and evaluated. If most self-identified "queer" LGB persons embrace the non-normativity of their sex/sexual and political selves as a reaction to the heteronormative lenses of monogamy, marriage, gender-binarism, and other non-queer political categories (in contrast to those LGB persons who have no political affection for such non-normative, recalcitrant, queer politics), trans individuals, whatever their political persuasions, are forced to embrace non-normative politics because they must pathologize themselves to ensure DSM protections (Warner 1999). Practicality and economic necessity (such as health insurance needs) regularly force trans individuals to choose a "queer" agenda that might belie the honest barometers of their personal, political beliefs. While there is an honorable temperament in the politics of queer recalcitrance, it is an ironic injustice that trans persons are currently forced to "queer" their politics in defense of their basic medical and legal protections.3
If much scholastic literature has focused on the intersections of the ADA's reach and trans identity in legal, disability, and trans scholarship, bioethics scholarship has been less vocal and less instrumental. Of course, voices in bioethics on queer subjectivity have been historically less loud—saying little or making claims from only a few bold scholars on a few subjects. Some of these LGBTQI subjects that have made their way into the bioethical conversations include: sex orientation research (Schuklenk et al. 1997; Murphy 1997); intersex kids (Dreger 1998; Dreger 1999; Karkazis et al. 2012); AIDS-related topics about spaces (from bathhouses to quarantine [End Page 260] ethics) (Rabin 1986) to more general HIV testing practices (Wahlert and Fiester 1998); and, reproductive ethics for LGBTQ persons (Stein 1998; Murphy 2010). In the past few years, there have been field-wide calls for more discussion on the health care and legal needs of LGBTQ persons in the bioethics literature: from Jamie Nelson (1998), Tod Chambers (2006), and queer bioethicists Lance Wahlert and Autumn Fiester (2012). But these are but a few voices. In the wider cacophony of scholastic voices on trans rights in legal and disability scholarly circles, there remains a challenge for bioethicists to better inform themselves and galvanize their influences to best serve the politics and justices for trans persons within disability protection statues.
Reflections on the ADA for Persons with HIV/AIDS vs. Trans Persons
So, who counts under the ADA? Let's close with the neighboring queer category of the seropositive, or those who are HIV/AIDS-positive. While the ADA passed in 1990, it initially did not include or protect persons with HIV/AIDS (PWAs). By 1993, the Federal Court of Appeals stated that a person symptomatic with AIDS "could be" protected from discrimination under the ADA (Panem 1985). On June 25, 1998, the Supreme Court held in Bragdon v. Abbott that an individual who is HIV positive but asymptomatic has a disability within the meaning of the ADA and is entitled to the protections of the statute (Wahlert and Fiester 2011). 20 years later, in 2008, Congress amended the ADA, making it easier for people with HIV/AIDS to demonstrate that they are persons with disabilities who are covered by the statute (Matthews 1988). According to the Civil Rights Division of the U.S. Department of Justice, PWAs (both symptomatic and asymptomatic) have physical impairments that substantially limit one or more major life activities or major bodily functions and are, therefore, protected by the law. Federal protections have articulated that PWAs deserve protection from discrimination given widespread fear, misunderstanding, and judgments about their lives and health (Panem 1985). By extension, in order to maintain reliable access to medical care that they need to live their longest, healthiest, and best lives, persons with HIV/AIDS must categorize and pathologize themselves, even if they are taking anti-retroviral drugs with a negligible viral load. In pathologizing themselves in order to receive access to care, PWAs (including PWAs with no viral load who have never experienced symptoms) consistently are determined to deserve disability status because they warrant increased [End Page 261] protection from discrimination. If transgender persons also live in a world that is extremely dangerous and discriminatory towards them, certainly they also deserve protections that would help them achieve the pillars of safety, access, and respectful care discussed above. Disability status, which only differs from pathological status in nuanced ways, has been afforded to other communities in a similar position and would certainly help protect trans persons. For example, Title 3 of the ADA would protect the right to access to public bathrooms, which is presently a major threat to the right of trans persons to maneuver in public spaces, such as schools and doctor's offices, as well as workplaces (Human Rights Campaign 2016b). Trans individuals deserve the same civic protections as HIV-positive persons and other disable-defined categories of subjectivity and citizenship. Diagnosis must lead to civil dignity for the politically marginalized.
In Eve Sedgwick's canonical work of queer theory Epistemology of the Closet, she opens with an insightful axiom that is positively, intellectually robust, in spite of its simplicity. She states with unabashed boldness and enviable courage: "People are different" (1990). Difference is the cornerstone of how human populations are appreciated and how they should be protected, especially when marginalized in civic and medical contexts. By extension, "choosing disability" can be a manifestation of embracing difference. Where the civil liberties and federal protections of such different/disabled lives are in the balance, perhaps this is not such a difficult choice after all.
Lance Wahlert, PhD, is Assistant Professor of Medical Ethics & Health Policy in the Perelman School of Medicine at the University of Pennsylvania. Dr. Wahlert also serves as Faculty Director of the Master of Bioethics (MBE) at Penn and holds joint faculty appointments at Penn in the Departments of English, Cinema Studies, and Gender/Sexuality Studies. Dr. Wahlert is also the co-founder and Director of the international project "Bioethics, Sexuality, Gender Identity," which has fostered a subfield in bioethics committed to the sensitivities of LGBTQ persons in medicine and the biosciences. He also serves as one of the guest editors of this special issue of KIEJ on the theme of "Choosing Disability."
Sabrina Gill, MD, MBE, is a graduate of the Perelman School of Medicine at the University of Pennsylvania and a resident in Family Medicine at the University of New Mexico School of Medicine. Committed to serving marginalized and underserved populations, Dr. Gill is currently developing clinical, research, and bioethical projects that attend to women's health, LGBT health, and addiction-related medicine.
1. "Cis-gender" and its neighboring term "gender-non-cis" find terminological relation to the labels "trans" and "trans-gender." The linguistic prefix "trans" literally means "on the other side of"—thus trans-gender suggests individuals who identify with and/or transition to the "other side" of their birth designation in terms of gender. The linguistic prefix "cis" literally means "this side of"—thus cis-gender suggests individuals who identify with the prescribed side of their birth designation in terms of gender. Of course, there is a wider array of vocabulary to explain the varied nomenclature that non-gender-normative persons can identify: such as, queer, genderqueer, gender-non-specific, asexual, etc. For the sake of brevity, we use variations of the terms "trans" and "cis" in this article. For further reading on the wider terminological nomenclature for gender-non-normativity, see The National LGBT Health Education Center: A Program of the Fenway Institute (Fenway Institute 2017). [End Page 262]
2. As a closing point to this brief history of the genesis of the ADA is a chapter that might be called the "Jesse Helms Exclusion Act." As the ADA reached its final congressional hearings, Senator Jesse Helms (R-SC) made explicit request that transgender and homosexual individuals not be included in the soon-to-be-passed ADA of 1990. He was successful in his objection. We continue to redress this amendment some 25 years later.