A History of the Intersection of American Healthcare and the LGBTQ+ Community By: Erica Cherian

Introduction

The LGBTQ+ community and the American healthcare system have an intricate relationship within the context of history. It is important to know the origins of various medical perspectives on the LGBTQ+ community, in order to understand how the community stands in terms of healthcare today. Patients of this community are among some of the most marginalized groups and experience a great number of health disparities. For example, LGBTQ+ teenagers are at much higher risk of depression and suicide than heterosexual teenagers.1 Much of the present- day marginalization by society is rooted in the outright discrimination and stigmatization of the past. Those discriminatory views of LGBTQ+ community, in particular, have been deeply affected by past medical perspectives on patients who belong to this population. In order to better care for these patients today it is imperative to look at the context of LGBTQ+ healthcare in the past. This paper deals with select topics related to the intersection of American and western healthcare with the LGBTQ+ community, with focus on concepts such as the changing medicalization of the LGBTQ+ community, and how it affected perceptions of the community by society, with specific focus on the changing medical definition of the LGB community, healthcare and therapies available to transgender individuals, as well as the AIDS epidemic.

Changing Medical Definitions of the LGB Community

The Lesbian, Gay, Bisexual, Transgender, and Queer (LGBTQ+) community has long been a part of human history, and in more recent Western history, the community has undergone vast changes in terms of both medical definitions, as well as how the community is perceived and treated by healthcare providers. Current understanding focuses on “attraction, behavior, and identity”.1 In regard to sexual orientation and attraction, modern definitions focus on a spectrum, which encompasses homosexuality, bisexuality, and heterosexuality. Additionally, there is a separation between biological sex, which is assigned at birth, from gender identity-within this distinction arises the transgender definition and community.Error! Bookmark not defined. However, these definitions have not always existed, and the field of healthcare has had an enormous influence on how the LGBTQ+ community has been defined. This is especially important to consider when treating members of the LGBTQ+ community, as in the past, the medical field has contributed to the stigmatization of the community. Western medicine’s first known attempt to define homosexuality was the discussion of the “sexual invert”, established by Karl Heinrich Ulrichs in the 1860’s.2 He postulated that individuals who were attracted to people of the same sex as them were “inverts”, because their sexual orientation did not match the typical orientation of their biological sex. He believed that men who were attracted to other men had a “female psyche” within their body, and women who were attracted to women had a “male psyche” in their body. Later, Kertbeny created the term “homosexual”.3 However, the person who came to be most associated with the current definition of sexual attraction was Sigmund Freud, in the 1920’s and 1930’s. He had a complex definition of sexual attraction, as he stated that he did not think that homosexuality was an illness, but instead thought that homosexuality was a part of normal development, and so persistent attraction to same-sex individuals was an arrest of normal development.4 5 6 7 While Freud did not believe that homosexuality was a pathological condition, a number of psychoanalysts began to consider homosexuality to be a mental illness. An example was Sandor Rado, who did not believe that homosexuality was a normal part of development, and instead was a deviation from the norm that could be “cured”. His work informed others who developed “cures” which had little empirical evidence.Error! Bookmark not defined. According to the Institute of Medicine (IOM), “During this time, many psychiatrists and psychologists attempted various ‘cures’(i.e. attempt to change homosexuals into heterosexuals), such as psychotherapy, hormone treatments, aversive conditioning with nausea inducing drugs, lobotomy, electroshock, and castration…”.Error! Bookmark not defined. While there was not universal agreement on this, in the World War II Era, many American psychoanalysts believed that homosexuality was a pathology, and ultimately it was included as a diagnosis in the first iteration of the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1952.7 8 This inclusion paved the way for a number of laws that prohibited members of the Lesbian, Gay, and Bisexual (LGB) community from participating fully in society. Based on the new diagnostic terminology, which labeled homosexuality as a class of sociopathic personality disturbance, many people were prohibited from being employed, laws were created that criminalized certain sexual practices (“sodomy laws”), sexual psychopath laws that typically applied to rapists and pedophiles were also applied to people of the LGBTQ+ community, and there were even recommendations to incarcerate individuals until they were “cured” of their homosexuality.1, 7 One of the most famous examples of this is the story of Alan Turing, a gay British mathematician, who helped de-code secret German ciphers, which helped turn the tide of World War II towards victory for the allied forces. His work also led to the development of the modern computer. In 1952, due to his sexual orientation, he was charged with “gross indecency” and underwent hormonal castration. He ultimately committed suicide, possibly due to the forced chemical castration.9 It can be argued that these medical definitions of this community tremendously affected how this population was stigmatized and mistreated by society. Ultimately, there was pushback on these concepts. One important source of contrast to the research and findings of the American Psychological Association (APA) and their DSM, was the research of Alfred Kinsey in 1953. His work established the spectrum of sexual attraction, and through surveying thousands of Americans, his team established that same-sex attraction was far more common than was believed at the time.10 11 Despite some statistical errors, this research laid the groundwork for further research and questioning about whether homosexuality should be considered a disease. Additional studies by Ford and Beach looked extensively into data on other species, as well as other cultures and demonstrated that same-sex attraction was far more common in both humans and animals than was previously understood, providing further support for Kinsey’s work.12 Another important study that came about due to his work was the work of Evelyn Hooker in 1957. Her research challenged the idea that all gay men were severely psychologically disturbed. In her research, she compared thirty gay men to thirty straight men, and found no more evidence of psychological dysfunction in the gay men than the straight men.13 These researchers helped establish a new perspective on the LGBTQ+ community, both in the world of science and with the general public. This work helped LGB activists at the time to begin challenging the concept that homosexuality was a disorder, and groups such as the Washington Mattachine Society were established to work on attaining civil rights for members of the community.1 14 These activists were able to achieve minor victories, but the major turning point for LGBTQ+ rights in America were the Stonewall Riots in NY in 1969, in response to police raids and brutality on patrons of LGBTQ+ spaces. This rebellion forced society to examine their treatment of members of the community, and helped draw a great deal of support from previously “closeted” (individuals who had not revealed their status as LGBTQ+ individuals) members of the community.1 14After the riots, many activists in the community began to perceive the DSM criteria as possible cause of some of the stigmatization of the community, which lead to activists interrupting the 1970 and 1971 APA conventions. Due to these protests, gay activists were allowed to attend the 1972 APA meeting, and were granted a panel to discuss their perspective on the medicalization of homosexuality. This included a discussion of the resultant stigmatization due to the definition of homosexuality as an illness.7 Resultantly, there was an investigation into what exactly constitutes a psychological disease, and whether homosexuality should be considered a diagnosis. This ultimately led to the re-defining of a psychological disease as one that causes significant distress to the individual, or one that causes impairment, such that the individual is not able to participate in society.15 As a result of thorough investigation by the Nomenclature committee of the APA, as well as the input of numerous other committees, the APA Board of Trustees voted to remove homosexuality from the DSM in 1973.1 7 While the activists did succeed in having homosexuality removed from the DSM, there was still some pathologizing of some forms of homosexuality; in the DSM II, there was a diagnosis called “Sexual Orientation Disorder” (SOD). It stated that if a person who was attracted to the same sex and was distressed by it, they would be diagnosed with SOD, and ultimately this led to the continued rationalization of conversion therapy. In the DSM III, this was changed to the diagnosis of “Ego Dystonic Homosexuality” (EDH), but in 1987, psychologists realized that neither SOD nor EDH qualified as a mental illness under the new definition of a mental illness, and EDH was also removed from the DSM.7 Western medicine has had a complex and ever-changing medical definition of homosexuality, which has had far-reaching consequences for society’s treatment of LGB individuals. This discussion is also divorced from the discussion of defining transgender individuals, which will be discussed in the next section.

History of American Healthcare for Transgender Individuals

The medical history of transgender individuals and their therapies is complex. Medical therapies for transgender individuals, in particular, has followed a tortuous path due to varying amounts of controversy about what treatment path should be followed. The father of transgender healthcare in Western medicine, was German physician, Magnus Hirschfield. He created the term “transvestite” and became the first person to differentiate homosexuality from “transsexualism”, which is the desire to live as the other sex.16 17 Although his terminology has become outdated, he was a pioneer in the field because his program was one of the first, in the 1920’s and 1930’s, to provide sex reassignment surgery and hormone replacement therapy, with the goal of helping patients to live as they wanted.16,18 In America, according to the IOM, “…by the early 1920’s reports emerged of men and woman who convinced physicians to preform castrations or hysterectomies as a means of changing their sex. During the 1930’s, endocrinologist Harry Benjamin became one of the first physicians in the United States to routinely administer hormone therapy to individuals desiring to change their sex. During the next 20 years, a few American physicians privately preformed sex re-assignment surgery on non-intersex patients.”1 While these therapies were occurring in the US, the vast majority of American psychologists did not accept surgery or hormone therapy as a treatment; they believed that it was detrimental to reinforce what they perceived to be a psychological disorder, and would often deny trans individuals sex reassignment surgery.17 However, through further research, there was a growing acceptance of the use of hormone therapy and sex reassignment surgery as a valid therapy for “transsexualism”.1 In particular, the story of Christine Jorgensen, a transgender woman captured the nation’s interest. In 1952, she underwent surgery to transition from male to female, and was considered by the national press to the be the first patient who was not intersex to undergo such a surgery.1, 17, 18 Her story led to a greater national interest and knowledge of trans individuals, and ultimately possibly paved the way for further research and understanding. This includes the work of Robert Stoller, who created the concept of gender identity, as well as John Money, who hypothesized the concept of gender roles.17 Money’s work in particular was instrumental in creating the modern understanding of transgender individuals. Based on studies of intersex children he fleshed out the concept of the gender identity, which he defined as an individual’s concept of self as a male or a female; he also thought that this is something that is acquired throughout childhood.19 He also created the idea of gender roles which are the various actions, behaviors and mannerisms that an individual utilizes to present themselves to the outside world as a male or a female, regardless of their biological sex. To summarize, gender identity is a person’s internal understanding of their own gender, while gender roles describe the specific sets of expectations that society of a man or a woman.17 These two concepts were pivotal in changing understanding of transgender healthcare, and ultimately helped pave the way for physicians at Johns Hopkins and other universities to create programs that would perform sex reassignment surgeries and hormone therapy, as well as officially evaluating these therapies as possible medical therapies for transgender individuals. These programs provided a much-needed professional backing for sex reassignment surgery and hormone therapy as official medical therapies for transgender individuals.18 The classification and psychological nomenclature of trans individuals has also undergone a number of rapid successive changes in the past few decades. In terms of psychiatric definitions, the initial terminology coined by Magnus Hirschfield was transsexualism. In 1980, thanks to the work of Money and his colleague Green, the DSM-III added the diagnosis of gender dysphoria, with subcategories of gender identity disorder of childhood and transsexualism, which referred to adolescents and adults. The DSM-IV, released in 1994, combined the terms into one overarching category, of gender identity disorder. In 2013, the DSM-V replaced gender identity disorder with the term gender dysphoria. Furthermore, it details that being transgender does not automatically mean that the individual has a diagnosis of gender dysphoria.20 This is a very similar concept to the aforementioned SOD and EDH, where dysphoria occurs when the individual in question is distressed by their status as a transgender individual, or is not able to function in society. These diagnoses also help people access healthcare, as it helps legitimize their treatment as a necessity.1, 21 However, more recently transgender healthcare has experienced a movement that seeks to upend these definitions and treatments.1 The idea behind this is that medical label is stigmatizing, similar to how homosexuality used to be a diagnosis and has since been removed from the DSM due to stigmatization. The movement also unveiled a wider array of gender expression than the simple binary system (male and female), and so transgender activists seek to broaden gender expression. Clinical management has changed to “…assisting transgender individuals in finding an expression that is comfortable and consistent with their gender identity.”1

Another important consideration in regard to transgender healthcare and history, is the marginalization of the community by healthcare workers. One of the most infamous examples of this is the story of Tyra Hunter, an African American transgender woman who was involved in a car accident in 1995. Upon arrival at the scene, EMTs cut off her pants to treat her, and when they discovered that she had male genitalia they began to make derogatory comments about her and stopped treatment, despite bystanders shouting at them to continue. Unfortunately, she died but her mother filed and won a wrongful death lawsuit.22 There are many more stories of transgender individuals facing discrimination in the field of healthcare. A more recent and heart wrenching example comes from Leslie Feinberg, a transgender individual with a fluid expression of gender who describes some of her experiences with healthcare,

“One of the 2 women at the front desk takes the clipboard and flashes me a generous smile. "Have a seat, sir." Minutes later she calls out, "Miss Feinberg, do you have insurance?" I stand up; she looks bewildered. To her credit, she recovers quickly. She goes out of her way to be warm to me. I sit back down and leaf through a magazine. The other woman at the front desk explodes in derisive laughter. She comments out loud about a patient's records: "Do you know what's on this man's chart? This man had a breast biopsy!" She snorts and snickers in a mean-spirited way. Everyone in the waiting room can hear her. You may be appalled at that breach of patient confidentiality. But as a transgender patient, I have another take on it. I hear her backwardness about sex and gender variance, and I hear her intolerance. I feel more fearful about this appointment today My reluctance isn't just because of how I might be treated by the front office staff. I dread seeing a physician because of a lifetime of experiences. Five years ago, while battling an undiagnosed case of bacterial endocarditis, I was refused care at a Jersey City emergency room. After the physician who examined me discovered that I am female-bodied, he ordered me out of the emergency room despite the fact that my temperature was above 104 deg F (40 deg C). He said I had a fever "because you are a very troubled person." Weeks later I was hospitalized with the same illness in New York City in a Catholic hospital where management insists patients be put in wards on the basis of birth sex. They place transsexual women who have completed sex- reassignment surgery in male wards. Putting me in a female ward created a furor. I awoke in the night to find staff standing around my bed ridiculing my body and referring to me as a "Martian." The next day the staff refused to work unless "if was removed from the floor. These and other expressions of hatred forced me to leave. Had I died from this illness, the real pathogen would have been bigotry.”22

Examples such as these demonstrate how healthcare workers’ biases regarding transgender individuals can be a matter of life or death for these patients. It is an important consideration going forward regarding the interplay of healthcare and the transgender community.

The AIDS Epidemic and Stigmatization of the LGBTQ+ Community

In 1981, the CDC reported the first cases of Pneumocystis carinii pneumonia and Kaposi sarcoma in young healthy gay men. This was the beginning of one of the most notorious epidemics in modern history. By the end of the year, 270 individuals had severe immunodeficiency and approximately 120 of them had died-around this time, some researchers began calling the disease “Gay-Related Immune Deficiency” (GRID), cementing the association between AIDS and the LGBTQ+ community in the public consciousness. In 1982, the CDC referred to the disease as Acquired Immune Deficiency Syndrome (AIDS), for the first time. In 1984, the causative agent of AIDS, Human Immunodeficiency Virus (HIV) was elucidated. In 1987, six years after the beginning of the epidemic, President Ronald Reagan referenced AIDS for the first time in a public speech. In the same year, the AIDS memorial Quilt, consisting of 1,920 panels (representing a portion of individuals who had died from the disease) went on display at the National Mall. 23 24 The toll of this disease is precisely illustrated by this stark history and this melancholy image.

Fig 1: AIDS memorial quilt on display at the national mall. Each one of 1,920 panels represent an individual who was lost to AIDS. The quilt today consists of 48,000 panels.25

The AIDS epidemic was an enormous watershed moment for the LGBTQ+ community, not just because it so disproportionately affected members of the community, but also because of the resultant fear and discrimination that developed in regard to the community. The disease at its onset was virtually a terminal diagnosis, with an unknown transmission, which created a perfect storm for the further marginalization of an already marginalized group.1, 26 Public opinion on affected individuals was particularly ruthless, due to the perception that victims had brought the disease on themselves, as the primary populations that were affected by the disease were IV drug users and gay men. In fact, a small but significant minority advocated for putative measures against patients with AIDS, “…including quarantine, universal mandatory testing, and even tattooing of infected individuals” demonstrating the lack of empathy and humanity that was afforded to these individuals. Error! Bookmark not defined. This stigmatization also affected public health policy, as the federal government rarely acknowledged the disease throughout the 1980’s.1 The media did not report on it as much as would be expected, and resources that should have been directed toward fighting the disease were instead mobilized to fight the stringent legislative measures that were placed on the patients. 26 Additionally, programs such as needle exchange programs, which had empiric evidence supporting them, were not enacted likely due to the stigma of drug use and AIDS. Research was stymied because there was precious little data collected previously on gay and bisexual men, the only real sources of data were the Kinsey’s reports from the 1940s.1 Another important legislative measure pursued was funding for education about safe sexual practices, and preventative measures, but due to the stigmatization of the LGBTQ+ community, the Federal government actively blocked funding this public health education. Gay rights activist Bill Bailey discussed how “a number of legislative amendments…some of them adopted into law-have stigmatized gay and bisexual men as abnormal, unhealthy and deviant. For example, Congress has prohibited federal expenditures for AIDS programs that “promote” or “encourage” homosexuality.” What makes that quote particularly poignant is the note from the editor stating that “Bill Bailey died from AIDS-related complications before finishing this chapter.”27 The AIDS epidemic was one of the most horrific things to impact the LGBTQ+ population in America and continues to affect people of the community to this day, not only in terms of LGBTQ+ patients becoming HIV+, but also the loved ones that they have lost along the way. It is extremely important that healthcare workers in the future take heed of the mistakes of the past and do their best to prevent them from happening again.

1 Graham, R., Berkowitz, B., Blum, R., Bockting, W., Bradford, J., de Vries, B., & Makadon, H. (2011). The health of lesbian, gay, bisexual, and transgender people: Building a foundation for better understanding. Washington, DC: Institute of Medicine, 10, 13128. 2 Kennedy, H. (1997). The Riddle of" Man-Manly" Love: The Pioneering Work on Male Homosexuality. Archives of Sexual Behavior, 26(2), 220. 3 Katz, J. N. (2007). The invention of heterosexuality. University of Chicago Press. 4 Morris, B. J. (2018). History of lesbian, gay, bisexual and transgender social movements. American Psychological Association. 5 Abelove, H. (Ed.). (2012). The lesbian and gay studies reader. Routledge. 6 Freud, S. (2017). Three essays on the theory of sexuality: The 1905 edition. Verso Books. 7 Drescher, J. (2015). Out of DSM: Depathologizing homosexuality. Behavioral Sciences, 5(4), 565- 575. 8 Bayer, R. (1987). Homosexuality and American psychiatry: The politics of diagnosis. Princeton University Press.

9 Doan, L. (2017). Queer history queer memory: The case of Alan Turing. GLQ: A Journal of Lesbian and Gay Studies, 23(1), 113-136. 10 Kinsey, A. C., Pomeroy, W. R., & Martin, C. E. (2003). Sexual behavior in the human male. American Journal of Public Health, 93(6), 894-898. 11 Kinsey, A. C., Pomeroy, W. B., Martin, C. E., & Gebhard, P. H. (1998). Sexual behavior in the human female. Indiana University Press. 12 Ford, C. S., & Beach, F. A. (1951). Patterns of sexual behavior. 13 Hooker, E. (1957). The adjustment of the male overt homosexual. Journal of projective techniques, 21(1), 18-31. 14 D'emilio, J. (2012). Sexual politics, sexual communities. University of Chicago Press. 15 Spitzer, R. L. (1981). The diagnostic status of homosexuality in DSM-III: A reformulation of the issues. The American Journal of Psychiatry. 16 Khan, Farah Naz. “A History of Transgender Health Care.” The Scientific American, 16 Nov. 2016. 17 Drescher, J. (2010). Queer diagnoses: Parallels and contrasts in the history of homosexuality, gender variance, and the Diagnostic and Statistical Manual. Archives of sexual behavior, 39(2), 427- 460. 18 Meyerowitz, J. J. (2009). How sex changed. Harvard University Press. 19 Money, J. (1994). The concept of gender identity disorder in childhood and adolescence after 39 years. Journal of sex & marital therapy, 20(3), 163-177. 20 American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: Author. 21 Landman, Keren. “Fresh Challenges To State Exclusions On Transgender Health Coverage.” NPR, NPR, 12 Mar. 2019, www.npr.org/sections/health- shots/2019/03/12/701510605/fresh-challenges-to-state-exclusions-on-transgender-health-coverage. 22 Feinberg, L. (2001). Trans health crisis: For us it's life or death. American Journal of Public Health, 91(6), 897. 23 "A Timeline of HIV/AIDS," US Department of Health & Human Services, 2015. 24 Fee, E. (2006). The AIDS memorial quilt. American journal of public health, 96(6), 979-979. 25 Interactive AIDS Quilt, www.aidsmemorial.org/interactive-aids-quilt. 26 Herek, G. M. (1999). AIDS and stigma. American behavioral scientist, 42(7), 1106-1116. 27 Bailey, W. A. (1995). The importance of HIV prevention programming to the lesbian and gay community. AIDS, identity, and community, 210-225.

Works Cited

"A Timeline of HIV/AIDS," US Department of Health & Human Services, 2015.

Abelove, H. (Ed.). (2012). The lesbian and gay studies reader. Routledge.

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders

(5th ed.). Arlington, VA: Author.

Bailey, W. A. (1995). The importance of HIV prevention programming to the lesbian and gay

community. AIDS, identity, and community, 210-225.

Bayer, R. (1987). Homosexuality and American psychiatry: The politics of diagnosis. Princeton

University Press.

D'emilio, J. (2012). Sexual politics, sexual communities. University of Chicago Press.

Doan, L. (2017). Queer history queer memory: The case of Alan Turing. GLQ: A Journal of

Lesbian and Gay Studies, 23(1), 113-136.

Drescher, J. (2015). Out of DSM: Depathologizing homosexuality. Behavioral Sciences, 5(4),

565-575.

Drescher, J. (2010). Queer diagnoses: Parallels and contrasts in the history of homosexuality,

gender variance, and the Diagnostic and Statistical Manual. Archives of sexual behavior,

39(2), 427-460.

Fee, E. (2006). The AIDS memorial quilt. American journal of public health, 96(6), 979-979.

Feinberg, L. (2001). Trans health crisis: For us it's life or death. American Journal of Public

Health, 91(6), 897.

Ford, C. S., & Beach, F. A. (1951). Patterns of sexual behavior.

Freud, S. (2017). Three essays on the theory of sexuality: The 1905 edition. Verso Books.

Graham, R., Berkowitz, B., Blum, R., Bockting, W., Bradford, J., de Vries, B., & Makadon, H.

(2011). The health of lesbian, gay, bisexual, and transgender people: Building a

foundation for better understanding. Washington, DC: Institute of Medicine, 10, 13128.

Herek, G. M. (1999). AIDS and stigma. American behavioral scientist, 42(7), 1106-1116.

Hooker, E. (1957). The adjustment of the male overt homosexual. Journal of projective

techniques, 21(1), 18-31.

Interactive AIDS Quilt, www.aidsmemorial.org/interactive-aids-quilt.

Katz, J. N. (2007). The invention of heterosexuality. University of Chicago Press.

Kennedy, H. (1997). The Riddle of" Man-Manly" Love: The Pioneering Work on Male

Homosexuality. Archives of Sexual Behavior, 26(2), 220.

Khan, Farah Naz. “A History of Transgender Health Care.” The Scientific American, 16 Nov.

2016.

Kinsey, A. C., Pomeroy, W. R., & Martin, C. E. (2003). Sexual behavior in the human male.

American Journal of Public Health, 93(6), 894-898.

Kinsey, A. C., Pomeroy, W. B., Martin, C. E., & Gebhard, P. H. (1998). Sexual behavior in the

human female. Indiana University Press.

Landman, Keren. “Fresh Challenges To State Exclusions On Transgender Health Coverage.”

NPR, NPR, 12 Mar. 2019, www.npr.org/sections/health-

shots/2019/03/12/701510605/fresh-challenges-to-state-exclusions-on-transgender-health-

coverage.

Meyerowitz, J. J. (2009). How sex changed. Harvard University Press.

Money, J. (1994). The concept of gender identity disorder in childhood and adolescence after 39

years. Journal of sex & marital therapy, 20(3), 163-177.

Morris, B. J. (2018). History of lesbian, gay, bisexual and transgender social movements.

American Psychological Association.

Spitzer, R. L. (1981). The diagnostic status of homosexuality in DSM-III: A reformulation of the

issues. The American Journal of Psychiatry.