Critical ConditionsFor Trans Individuals, Seeking Medical Care Can Be a Minefield

This article appears in our 2015 Fall issue, Blood & Guts. Subscribe today!

It was August 2012, one of those warm summer nights that holds the promise of adventure and the thrill of an open highway. The radio was turned up, and laughter filled the space between two bodies; an open window let the speeding air in to cool the riders’ warm skin. Midnight travelers hopped up on caffeine sped by in trucks; teenagers in cars headed to the next party, swerving lightly in and out of white lines; couples stared out at infinite blackness and, occasionally, each other. 

It happened fast—a deer leaped boldly across a highway, skirting speeding orbs of light. Seconds later, on the side of a Missouri highway, Ajay Strong lay pinned beneath the steering wheel of his overturned car. A blurry uncertainty hung over the moment, only one thought clear to him: “I’m going to die.” He’d imagined this moment many times. “It was one of my biggest fears: What if I get into an accident and they think they’re picking up this guy? And they cut my clothing off and realize that I have all these female parts? And that is exactly what happened.” 

Strong was transported to a nearby hospital, where his injuries were determined to be too complex for their level of care. The doctors quickly stabilized him and transferred him to Barnes-Jewish Hospital in St. Louis, a Level I Trauma Center. There, Strong spent days in an intensive-care unit before surgeons could operate on him, then another week in recovery; he had internal bleeding, a shattered shoulder, a broken back, contusions, bruises, and scrapes that told the story of what happened on that dark highway. He cried as his body was mended back together. But it wasn’t just the physical pain or the invasiveness and helplessness that comes with being hospitalized. As a patient, he lost his identity. Inside the hospital walls, he was no longer trans.

“I had been living my life as a trans man, going by my chosen name for almost 10 years, and asking my friends to use male pronouns, and then I get into this situation where who I really am completely disappears. I felt invisible. That person I had been living as—Ajay—didn’t exist in that hospital setting. I became this female who was called by my old name and was treated as such.”

In the years that followed his accident, Strong began his physical transition through hormone therapy. He legally changed his name and gender, and, by all appearances and markers, is male. Still, he worries about what would happen if he was in another car accident or was incapacitated and required emergency care. “If something like that were to happen again, they would find my identification and go into the situation thinking I am 100 percent biologically male. What would be revealed later would be really uncomfortable at the very least. It’s a major source of anxiety.” 

patient in hospital bed

At a time when Caitlyn Jenner, Laverne Cox, Aydian Dowling, and other trans-identified persons are more visible than ever and are able to speak about the trans experience to a mainstream audience like never before, notably missing from the conversation is a discussion on the barriers the community faces accessing adequate medical care. This lack of understanding of trans identity, gender presentation, and the community’s needs creates barriers to healthcare on every level, from insurance coverage to conversations over the pharmacy counter to the emergency room. In addition, the medicalization of trans bodies has enabled the medical community to essentially act as gatekeepers to trans identity. Doctors, psychologists, psychiatrists, and insurance companies play a significant role in determining who gets to legally and culturally be trans by providing—or denying—access to a number of (albeit, few) benefits. 

Results from a 2009 Lambda Legal survey of LGBTQ persons (“When Healthcare Isn’t Caring”) found that “In almost every category of discrimination measured…transgender or gender-nonconforming respondents (TGNC) reported experiencing the highest rates of discrimination and barriers to care compared to those who reported discrimination based on sexual orientation or HIV status.” Almost one-third of survey respondents that identified as TGNC had been refused the care they needed, with another nearly 21 percent “subjected to harsh or abusive language by healthcare providers.” 

One of the most basic medical needs of trans people is the right and means to physically bring one’s body into alignment with one’s gender. The mental and emotional well-being derived from this process, along with the benefits of “passing” as cisgender (chief among them, safety and reduced discrimination), are well known and documented. Yet medical treatments and procedures needed for a safe, informed, and healthy physical transition are strictly guarded by the medical community through rules and criteria requiring trans people to “prove” these treatments and procedures are “necessary.” While these vary clinically, basic requirements usually include a period of ongoing psychological care, proof of a lived existence in the target gender, and, in the case of sexual reassignment surgery, letters showing a mental-health diagnosis—all in order to prescribe sexual reassignment as the recommended “treatment.” Even when these requirements are met, many insurers opt to not cover hormone therapies, sexual reassignment surgery, and in some cases, the mental-health counseling and evaluations required by clinicians in order to meet the criteria for ongoing psychological care needed to physically transition.

The medical community also fails trans patients in access to basic primary care. Through a lack of awareness and sensitivity, trans patients fail to receive treatment that takes their unique identities into consideration. Strong is not alone in his experience of finding himself “invisible” in interactions with the healthcare system. Ola Osaze, a community activist who identifies as a “trans-fag feminist,” notes “In many states, healthcare professionals don’t understand the community and view us through a rabidly transphobic lens. They either refuse to treat us because [to them], our gender identity/presentation/markers doesn’t align with the kind of care we’re seeking—[for example, a] trans man needing OB-GYN services. Or they try to engage us in a ‘Trans 101’ discussion when we’re in need of urgent care.” 

For these reasons, many trans people simply avoid interacting with the healthcare system altogether, denying themselves much-needed preventive and even urgent care in order to limit their exposure to transphobia. The same 2009 Lambda Legal study found that “transgender or gender-nonconforming respondents experience alienation from the healthcare system” more than any other group surveyed: “Eighty-nine percent are concerned that there are not enough healthcare professionals who are adequately trained to care for TTGNC people [and] 73 percent believe they will be treated differently by healthcare professionals because of their gender identity or expression.” For Quinn Villagomez, a queer artist of color, the maze of restrictions placed on trans bodies trying to access services is a barrier in and of itself. “I try and avoid [it] because it’s such a confusing system.” 

Like any form of identity-based discrimination, there are various intersections through which the trans community experiences medical stigmatization. Trans people of color report experiencing higher rates of discrimination and substandard care when seeking medical treatment than their white counterparts. Lambda Legal reports that collectively, the trans community is “much more likely to be low income and uninsured and, as a result, much less likely to have access to quality healthcare” than cisgender people, and more likely to face higher rates of unemployment and work discrimination, resulting in increased chances of their being fired or denied promotions. Consequently, many trans people make less income than cisgender people or do not receive employer-based health insurance. Even when they do, insurers can still opt out of covering trans-related medical care.

Villagomez notes, “I am currently not on hormones. I have insurance through work, Blue Cross Blue Shield, and they will not cover me.” The Affordable Care Act, which included the first federal protection against discrimination in accessing healthcare for trans and gender-nonconforming persons, expanded access for many in the community; but, as with employer-based insurance, insurers do not have to cover physical transition services, requiring people to pay out of pocket for these necessary treatments. (A fact not lost on many who witnessed the glowing response to Caitlyn Jenner’s public transition, knowing she has resources many do not.)  

In fact, by virtue of lack of widespread access to modern medicine, many trans people historically had (and have) been able to form their identities by whatever means they felt appropriate. It is only in the last century that advancements in modern medicine expanded the opportunity for trans people to more fully realize their gender through physical transition. The current approach of many doctors and other healthcare professionals to trans identity began in the 1960s after the very public and widely covered transition of Christine Jorgensen, a former U.S Army clerk who sought gender-transition treatments in Sweden. After more than two years of electrolysis, hormone treatments, and surgery, she returned to the United States, the New York Daily News announcing “Ex-GI Becomes Blonde Beauty.”

In the decade after Jorgensen’s public transition, there was growing demand by trans people for the same gender-affirming treatments and increased media coverage followed. The awareness sparked by Jorgensen’s story coincided with advancements in modern medicine, parallel phenomena that led to the institutionalization and regulation of trans identity over the next few decades. As the medical community in the United States began performing physical transition care in the 1960s, Harry Benjamin emerged as the leading physician in the field. Concurrently, major medical institutions such as Johns Hopkins and Stanford began to care for and conduct research on trans identity through affiliated gender identity clinics. As both demand for services and increased medical interest in trans persons grew, there was a need to standardize treatment.

This became formalized with Benjamin’s creation of the Standards of Care (formerly known as the Benjamin Standards of Care) in 1979. The Standards of Care outlined nonbinding, though widely adopted, guidelines for treating individuals seeking physical gender transition through hormones or surgery. In 1980, when the American Psychiatric Association added gender identity disorder (GID) to its Diagnostic and Statistical Manual (DSM) of mental disorders, the treatment of trans individuals (and their access to healthcare) became concretely embedded within the medical community. Trans identity formally came to be regarded as an illness that, like any other, required protocols and regulations for treatments that safeguard both physicians and patients.

Except that trans identity is not an illness. The most recent DSM, issued in 2013, has since removed the “mental disorder” label, reclassifying GID as “gender dysphoria.” But this association continues to frame how trans people experience the healthcare system. The DSM serves as a guideline for insurers on medical coverage, determining not only who can access healthcare, but also what services they are guaranteed based on a panel of medical and mental health experts. For trans patients, this is significant: Providers are often required by insurance companies to adhere as closely as possible to the DSM guidelines and descriptors on the trans “condition” in order to ensure patients are not denied medical coverage for services. The creation of medical “experts” on trans identity and its categorization as a psychological disorder also informs how politicians, society, and institutions alike view trans individuals. 

Trans people who wish to do anything from change their legal names to fight eviction to receive due process within the criminal justice system often rely on letters from medical professionals and psychiatrists in order to “prove” their identities to these third parties. Likewise, discrimination in employment and housing or even frequent harassment that transgender people face in their daily lives can be greatly reduced through physical transition treatments and procedures that can only be accessed through clinicians and with comprehensive insurance coverage.

This medicalization of trans identity has meant that doctors—not trans individuals—have defined an entire discourse on identity, one that is based on traditional alignment with society’s conception of gender. Parallel with the history of reproductive rights for women, the question at the root of the “professionalization” of trans healthcare is whether some individuals know what is truly best for them and their bodies.  The trans community’s response to medicalization has been strategic, both resisting and navigating the current model to advance legal protections and the right to access certain medical treatments. For Villagomez, “gender dysphoria” reflects actual feelings and experiences of her gender identity: “I have experienced depression, fear, anxiety, and at times resentment about my body. This issue has caused rifts in my family, friends, people in general, and even in relationships, which is still very hard for me.” However, she adds “I don’t really like the term [gender dysphoria] as a label toward trans people.”

Ajay Strong, whose “official” diagnosis of gender identity disorder occurred before the DSM change, outwardly rejects the mental-disorder label and doesn’t think it should be necessary to access treatments needed for physical transition. “As trans people, we spend a lot of time building ourselves up and building each other up, and then we go out in the world and [have] to convince others. The main idea is that we are human, just like everyone else, and there is nothing wrong with us. We are not sick. We are not mentally ill. But then we have to go through the system in order to physically transition, and in order to get our prescriptions, we must first see a psychologist and get a letter stating that we have a mental disorder.” Speaking to the far-reaching consequences of this diagnosis, Strong adds, “Gender identity disorder; that’s what it says in my medical records, and it’s not going to go away. So even when I go to the doctor for something unrelated to my transition, this pops up. I’ve had other doctors ask me about it—‘Gender identity disorder? What is that?’ It’s humiliating, to say the least.” 

The failure of the existing healthcare system to meet the medical needs and recognize the humanity of trans patients has led to the development of trans community–created networks of alternative resources drawn from generational knowledge and personal experiences. Crucially, these new models challenge the established orthodoxy on who is an expert on trans bodies and needs. “Because there’s so much misinformation about trans people and healthcare, oftentimes medical professionals are clueless about how to help us manage our health and transition needs,” says Osaze. “Or there’s inadequate research into our healthcare needs in the first place, [such as] trans people and hiv/aids prevalence and prevention, so folks have to figure it out as they go along. Trans people and allies have had to teach the medical community the meaning of medically necessary care.” Organizations such as the National Center for Transgender EqualityLambda Legal, and New York City’s Callen-Lorde Community Health Center are not only resources for those seeking information not readily available elsewhere, but they have also become sources of knowledge for practitioners and clinics on how to properly care for trans patients and recognize community-specific medical concerns. 

But even as trans activists reclaim medical control of their bodies and gain more legal recognition within the United States, medical practitioners remain a barrier to adequate care. Many physicians feel ethically and morally challenged by caring for individuals who are physically transitioning or functioning outside of the gender binary. But bigotry, shrouded in an ethical dilemma, does not override the Hippocratic oath to care for the sick. The pretense of an ethical or moral dilemma lays bare the real reason for continued disparities in the treatment of trans people: Trans identity poses a fundamental challenge to traditional notions of gender. Attempts to medicalize trans identity—intended to professionalize the care of trans individuals—have failed to transform a deeply ingrained social construct of gender. Even attempts to pathologize trans identity as a mere rejection of socialized gender is flawed. “I want to push back against this idea that trans people are initially socialized as their ‘birth gender’ before transitioning,” says Osaze. “For many of us, socialization didn’t ‘take.’ From a young age we knew about our trans-ness, spent our lives rejecting attempts to socialize us, and, time and time again, paid a heavy price for it.” 

Trans identity not only resists the status quo but exposes a well-documented and accepted truth within many non-Western societies: A person’s gender, sex, and biological composition are not inherently linked. Our organs do not define us. A penis is not intrinsically tied to the experience of being male, and can also be constructed and deconstructed through modern medicine. Likewise, vaginas and ovaries do not hold in them fixed identities, no matter how much we associate both with being female. Even more radical is the challenge that being male or female does not mean being a man or a woman; it is instead simply an expression of how we feel. Society must overcome this conundrum within medicine to guarantee everyone the right to affordable and accessible healthcare. 

“There are seven billion people in the world, and seven billion unique ways to express one’s gender,” Martine Rothblatt (lawyer, author, wife, entrepreneur extraordinaire—you can thank her for Sirius Satellite radio—and self-identified “transhumanist”) once said. “Genitals don’t determine your gender…that’s just a matter of anatomy and reproductive tracts.” Our anatomy and reproductive tracts are just that—the organs and parts we’re made of. Who we are inside is something altogether different.

illustration of lighthouse

This article was published in Blood & Guts Issue #68 | Fall 2015
by Kari Mugo
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Kari is a queer writer, born and raised in Nairobi, Kenya and spending her formative years in the Midwest. She is a self-described Third Culture Kid, trying to find the balance in 3. You can follow her on Twitter @the_warm_fruit.

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