Laura Hershey. Encyclopedia of Lesbian, Gay, Bisexual and Transgendered History in America. Volume 1. Charles Scribner’s Sons, 2004.
Every nation, every group, and every community includes a significant minority of people with physical and mental disabilities, and the LGBT community is no exception. Approximately 20 percent of the U.S. population has some type of disability, and 12 percent have a disability that is significant or severe. There are probably well over five million queers with disabilities in the United States. While LGBT people have struggled for social acceptance, self-respect, and civil rights, LGBT people with physical and mental disabilities have engaged in parallel struggles, both in society at large and within their disability communities and their queer communities.
Queer identity and disability identity have been more or less problematic at different times for different groups of people. Who is disabled, who is queer, and what difference does it make anyway?
Complicating many people’s queer identity is the prevalent social denial of disabled people’s basic sexuality. This denial undermines possibilities for queer friendship and romance. Further, it reinforces a presumption of incompetence and irresponsibility. For example, puritanical service delivery systems forbid sexual expression by those in their charge. People may assume that sexually active LGBT people are actually being victimized by their partners. The common perception is that disabled people shouldn’t be doing, or even feeling, anything—let alone “deviant” things.
Within the LGBT community some people have preferred to keep their disabilities invisible, whenever possible, in order to try to preserve the privileges associated with nondisability, privileges such as blending in, avoiding scorn or pity, being invited to social events, and getting dates. In fact, not all disabled queers identify as “disabled.” Many think of themselves instead as chronically ill, sick, frequently depressed, bothered by back pain, or similar descriptions based on symptoms, not social identity. (This article includes all such people in the “disability community.”) Other disabled queers, unwilling or unable to closet their disabilities, closet their sexualities in order to survive homophobic service systems or to retain relationships with important support people.
Sometimes, however, queer identity and disability identity collide—either in an individual’s experience or in issues faced by whole communities—bringing notions of ability, sexuality, and normalcy into sharp relief or conflict. These struggles have encouraged deeper discussions of diversity, inclusion, and ownership in both queer and disability communities.
A History of Activism
Though rarely visible to the wider LGBT community or to the straight disability community, LGBT disabled people—or queer crips, as many choose to call themselves— often respond to exclusion and marginalization by taking constructive action, either individually or collectively, to improve social conditions and subvert oppressive conventions. (The term “crip,” derived from “cripple,” has historically referred primarily to people with physical impairments that affect walking. Recently, however, the word has been appropriated by many in the disability community as an umbrella term signifying a proud, somewhat sardonic identification.) The following are a few examples of disabled queers’ organizing and activism:
- 1977: LGBT people founded Rainbow Alliance of the Deaf (RAD) and held its first national conference in Fort Lauderdale, Florida. RAD now has over twenty chapters throughout North America, and holds a national conference every other year. The Alliance promotes educational, economic, and social rights and offers social opportunities and discussions of problems and solutions.
- 1980: Six feminist activists in Minneapolis-St. Paul, Minnesota, founded Womyn’s Braille Press to make lesbian and feminist literature available to women who were blind or otherwise unable to read print. Through grant-writing, grassroots fund-raising, and the enthusiastic work of founders and volunteers, Womyn’s Braille Press was able to produce and circulate over eight hundred lesbian and feminist books recorded on tape and forty in Braille.
Womyn’s Braille Press also produced a quarterly newsletter, distributed in print, in Braille, and on tape, which created a sense of community among disabled women, including lesbians. Eventually funding and energy ran out, and in 1994 the Press disbanded and transferred its inventory to the Bureau of Braille and Talking Book Services in Daytona Beach, Florida, where it continues to be available to readers by request.
- 1981: Activist Connie Panzarino organized the first Disabled Lesbian Conference following the Michigan Women’s Music Festival.
- 1983: Dykes, Disability & Stuff (DD&S), a quarterly grassroots newsletter featuring news, reviews, verse, essays, and art, began publication in Wisconsin. In order to meet the accessibility needs of lesbians with all types of disabilities, DD&S is available in many formats, including standard print, large print, audio cassette, Braille, DOS diskette and modem transfer.
DD&S is an aggressive proponent of greater access to lesbian culture and community; for example, it will not accept advertisements and notices for resources or events which are not accessible to disabled people or which fail to provide access information.
- 1989: Hillary Russian, a young disabled dyke in Seattle, Washington, founded Ring of Fire: A Zine of Lesbian Sexuality. This low-budget, irreverent publication has continued to appear on an irregular basis, offering erotic and often humorous stories and cartoons about gender-bending, crip culture, living with a disability, and sex.
- 1992: Members of Deaf Counseling, Advocacy and Referral Agency obtained funding from United Way and from the State of California to establish the Deaf Gay and Lesbian Center (DGLC). The Center serves deaf and hard of hearing LGBT communities throughout the San Francisco Bay area and fights isolation, oppression, discrimination, and inaccessibility of information through advocacy, empowerment, and communication access.
- 1997: Deaf Youth Rainbow was launched as a project of Capital Metropolitan Rainbow Alliances in the Washington, D.C., area to provide a safe, supportive, educational environment for deaf and hard-ofhearing people ages thirteen to twenty-four.
- 2002: Sharon Duchesneau and Candy McCullough, a deaf lesbian couple in Bethesda, Maryland, went public with their decision to select a deaf sperm donor in order to increase the chances that their child would be born deaf. A Washington Post Magazine article about the couple sparked a national online debate. While many people acknowledged and understood the couple’s lesbian pride, many more were highly critical of their deaf pride.
- 2002: Over three hundred activists, artists, and academics came together for the first-ever Queer Disability Conference in San Francisco, California. Presentation topics included medical discrimination; being out at work about disability and sexual orientation; queer crip performance; partners and allies; queer crip sexualities; and much more. Drawing a vast range of disabilities and identities, the conference became a space for revelation, networking, conflict, and solidarity.
Intersecting Issues, Parallel Oppressions
In addition to the many people who are both queer and disabled, some activists within both groups have pointed out the parallels and intersections in the histories of (disabled and nondisabled) LGBT people and (straight and queer) disabled people. Individuals from both groups generally come of age in isolation from others “of their kind” and come to terms with an identity not shared by their immediate families, close friends, or communities. Some families reject the queer family member (by disowning or disinheriting him/her) or the disabled family member (by sending him/her to a nursing home or other institution). Even when families accept and stand by their family member, they may not be able to nurture her/his full cultural development as a queer or disabled person. Without a ready-made community able to understand or reflect their experiences, disabled people and queer people must often embark on a quest to find support, solidarity, and mentorship.
Both disability and queerness have been pathologized in the United States. Early American notions of “normality” clearly excluded those whose bodies or minds worked differently, and those with unconventional sexualities. Intersexed people, transgender people, and people with physical and mental differences were “enfreaked” (a term used by some disability history scholars to signify the process of constructing individual or group differences into a public spectacle of abnormality) in the nineteenth-century freak shows accompanying traveling carnivals. As the medical profession grew and gained social and intellectual influence, its definitions, diagnoses, and prescriptions shaped the dominant view of both disabled people and queer people. Both groups were seen as deviant and in need of being fixed—through cure or rehabilitation regimens aimed to restore the disabled person to able-bodied “wholeness,” or through “reparative therapy” designed to turn homosexuals into heterosexuals.
The medical profession and society have sometimes blurred the lines between “defective” and “perverted” and between “queer” and “crazy.” Nineteenth-century medical practitioners applied arbitrary psychiatric labels, such as “hysteria” and “neurasthenia,” to women who challenged patriarchal gender roles by, among other audacities, loving other women. For many years homosexuality was labeled a mental illness, making it a form of disability. The American Psychiatric Association withdrew that designation in 1973 and condemned the practice of “reparative therapy” in 2000. But even now many LGBT teenagers are committed to psychiatric facilities and subjected to aversive treatments; by one estimate 300,000 adolescents, including many queer youth, are currently living in such facilities.
Throughout U.S. history, both queer people and disabled people have frequently been stigmatized, ostracized, and targeted for violence, both official and random. For example, during the twentieth century thirty-three states enacted laws allowing the forced sterilization of marginalized groups such as those labeled (in the words of Oregon’s law) “feeble-minded, insane, epileptic, habitual criminals, moral degenerates and sexual perverts,” including homosexuals. In all, more than sixty thousand people underwent involuntary castrations, tubal ligations, and hysterectomies. In December 2002, advocates for disability rights and for lesbian and gay rights received a public apology from Oregon Governor John Kitzhaber for that state’s role in forcibly sterilizing 2,600 people. California and Virginia have also apologized to both groups for similar policies.
Queer people and disabled people, like other minority groups, face many other hazards of marginalization, including hate violence, discrimination, and a culture suffused with negative and inaccurate stereotypes. Yet queer people and disabled people have historically been left out of civil rights laws and hate crimes laws enacted at federal, state, and local levels to offer protection to racial, religious, and other minority groups. During the 1990s and early 2000s some states and cities debated and in some cases passed amendments to add LGBT people and disabled people to existing bias crime laws or nondiscrimination ordinances or new statutes that included LGBT people and disabled people among others.
Sharon Kowalski: Double Discrimination Sparks Activism
The issues of disability and sexuality came together in dramatic and public ways in the Sharon Kowalski case. Kowalski was a college professor in St. Cloud, Minnesota, and a closeted lesbian living in a committed, four-year relationship with Karen Thompson when, in 1983, she sustained serious injuries in a car accident. She emerged from a coma with significant physical and cognitive disabilities. When Donald and Della Kowalski learned about the nature of Thompson’s relationship with their daughter, they attempted to bar her from visiting her partner. Had the couple been heterosexual and married, Thompson would have been the next of kin, with the right to make decisions about Kowalski’s placement and treatment. For a lesbian couple, no such rights existed. Had Kowalski been nondisabled, she never would have been stripped of her autonomy and liberty by being institutionalized and ignored. In an effort to stay involved in Kowalski’s life and her rehabilitation process, Thompson filed for guardianship; the Kowalskis counter filed. An out-of-court settlement was reached which appointed Donald Kowalski his daughter’s guardian but also protected Thompson’s right to visit and to have input into medical care decisions. Soon, however, a court granted Donald Kowalski guardianship with unlimited powers. He used this power to ban not only Thompson but also other friends and advocates from visiting his daughter, and he had her transferred to a nursing home far from St. Cloud. Over the next six years, the parties returned to court several more times. Thompson’s claims were supported by the American Civil Liberties Union, the Lambda Legal Defense Fund, and other LGBT rights groups, as well as by some disability groups. The two communities framed the issues somewhat differently: LGBT advocates focused on the need for recognition of same-sex partnerships, while disability advocates focused on disabled people’s need to have self-determination and alternatives to independent living.
This case galvanized activists from two communities that had rarely cooperated. “National Free Sharon Kowalski Day” on August 7, 1988, brought together thousands of people in twenty-one cities to express support and concern for the issues raised by this case. Thompson became a popular speaker at LGBT rights events. In 1988, a competency hearing determined that Kowalski could in fact communicate. In August 1992 Thompson was finally given guardianship of Kowalski, and in April 1993 Kowalski moved back home with her partner. As of this writing, Kowalski continues to live with Thompson and another woman, supported by them and, after intensive advocacy to secure adequate support services, by state-funded assistance.
Positive, Disabled: The (Incomplete) Transformation of AIDS from Medical Crisis to Disability Rights Issue
The AIDS epidemic had a major impact on the LGBT community, killing thousands of gay men and sparking activist groups to demand treatments and cures. As time went on, AIDS cases continued to increase, but drug regimens prolonged the lives of many people with the disease. While many advocates stayed focused on the goal of curing AIDS, some others expanded their agenda to address issues facing people living with AIDS such as job discrimination, housing discrimination, inadequate community-based support services, other issues that are, essentially, disability issues.
This new recognition of AIDS as a disabling condition led to tentative coalitions between AIDS activist groups and disability rights organizations. These coalitions proved durable, and important in the development of civil-rights laws. During Congressional debates over the 1987 Civil Rights Restoration Act and the 1988 Fair Housing Amendments Act, attempts were made to exclude people with “contagious diseases,” including HIV. These attacks were successfully defeated. Before the U.S. Senate began consideration of the Americans with Disabilities Act (ADA) in 1990, over fifty organizations representing AIDS, disability, civil rights, and religious groups sent letters to every Senator urging that the ADA protect “people with AIDS and HIV infection.” Since the ADA was enacted, a number of HIV-positive people have used it to assert their rights to equal treatment in employment, state and local services, and public accommodations. In 1998, the U.S. Supreme Court ruled that asymptomatic HIV is a disability under the ADA.
Help and Independence: Meeting Disabled Queers’ Support Needs
Some people with AIDS and other disabilities need varying degrees of support services, including personal assistance with daily living, nursing care, and/or housekeeping assistance. As currently configured in the United States, support services for disabled people are often inadequate and/or confining. Services are not available to all the people who need them, but are restricted to those who meet eligibility requirements based on geographical area, income, age, diagnosis, and other factors. Private health insurance rarely pays for long-term care, especially inhome care. And publicly-funded programs, such as Medicaid and Medicare are more likely to fund such services in nursing homes and other large congregate-care facilities, rather than in the individual’s own home, despite the U.S. Supreme Court’s 1998 Olmstead decision which declared unnecessary segregation a form of discrimination, and ordered states to provide support services in the “most integrated setting” possible for the individual.
For disabled LGBT people, support services can be even more problematic. When LGBT people have to rely on social programs, which may be heterosexist in structure, policy, and practice, they may experience homophobic attitudes from staff, isolation from peers, even violence. In one study, more than half of the nursing home social workers surveyed said their staff was intolerant or condemning of homosexual activity between residents. A transgender person with a non-congruent body may face judgment, taunting, or cruelty from health care workers providing intimate personal assistance, such as dressing and bathing. Fearing such treatment, some people may forgo the help they need, thus jeopardizing their health, rather than deal with potential providers’ insensitivity and ridicule. Experts say this homophobia may reflect larger sexphobia within assisted and congregate living situations, particularly in nursing homes. Researchers report a high degree of discomfort on the part of nursing home staff regarding residents’ sexual expression.
Compounding the problem of obtaining adequate personal assistance is the lack of social support and recognition for LGBT families. Family members are an important source of care for disabled and older people, yet LGBT people are less likely than other elders to have a spouse or children and more likely to live alone. While 31 percent of American elders live alone, some studies suggest that as many as 65 to 75 percent of older lesbians and gay men live alone.
The Policy Institute of the National Gay and Lesbian Task Force Foundation (2000) has identified additional barriers to care giving for LGBT people who are older and/or disabled. These include:
- Discriminatory health care plans that deny same-sex partners access to coverage that might pay for care-giving needs, as well as loss of health care benefits following loss of employment due to discrimination;
- Exclusion from financial support and incentives provided by government support strategies for caregiving, such as the Family and Medical Leave Act of 1993;
- Loss of potential caregivers within the gay community, due to the large number of deaths from AIDS;
- Pervasive negative attitudes, particularly within the gay male population, against older and disabled people who need caregiving services;
- Health care providers’ lack of cooperation (for example, unwillingness to share information) with caregivers who are not immediate family members, or who do not fit into the heterosexual definition of “family.”
Some LGBT advocates have proposed the establishment of gay or gay-friendly nursing homes in order to meet the needs of aging and disabled queers. Most disability rights activists in the community reject this argument, arguing that institutions of any orientation inevitably segregate and deprive people of their liberty.
A number of LGBT people with disabilities are active in American Disabled for Attendant Programs Today (ADAPT), a grassroots movement demanding a nationwide system of in-home support services for all who need them in order to live independently. ADAPT activists emphasize the importance of consumer-responsive services to enable people to enjoy self-determination, including the right to live with whomever one chooses, and to select one’s own helpers—both crucial considerations for LGBT disabled people who need personal assistance. While not a queer organizations, ADAPT’s diversity has always included LGBT members.
Who Belongs Here?: Access and Inclusion in Queer Communities
Inclusiveness and solidarity were high ideals of the early lesbian and gay rights movement. Influenced by feminism, African American civil rights, and other liberation movements, LGBT groups generally placed a high premium on trying to be sensitive to issues of race, ethnicity, class, and ability. But as equality politics replaced liberation politics, the assimilation of LGBT people into straight society required greater conformity. As disabled writer and editor Victoria Brownworth has written, “The political desire to present to straight society a community ‘deserving’ of heterosexual privilege, a community that is comprised of straight-seeming, monied, middle-class and otherwise ‘normal’ queers, looms large on the mainstream political agenda as a polemic that argues ‘We are no different from you’ is emphasized….Inclusion often depends on the loudness of voice, the cohesion, solidarity, and access of a particular minority within a collective minority. Disabled queers, who have always skirted the margins of queer community, have become virtually invisible” (p. xii-xiii).
This tension between inclusiveness and mainstreaming has played out in countless queer spaces—gay bars, LGBT community centers, women’s music festivals, queer studies conferences, and many more. Demands for access have been met, variously, by guilt, bafflement, intransigence, genuine effort, productive change—and often, a combination of these.
Despite decades of calls for inclusiveness, many queers and queer communities remain either hostile or indifferent to disabled people. In 2000, the magazine the Advocate conducted a poll, asking readers: “Do you think people with disabilities are treated fairly within the gay and lesbian community?” 56 percent answered “No,” while 22 percent answered “Yes,” and 21 percent answered “Undecided.” If that poll were conducted among disabled queers exclusively, the “Yes” vote might have been much higher.
Nevertheless, queer crips persist in being present in all of their diversity. As one disabled lesbian said, “We cannot be compartmentalized people. I had to integrate everything. I am a person who happens to be a lesbian, who happens to have a disability, but most importantly, I am a whole person” (Brownworth and Raffo, p. 30).
Make Love, Not Barriers: Access to Sex
Sexuality is one element binding together various queer communities. Dating, dancing, clubbing, coupling, flirting, and having sex are, for many people, important aspects of the queer experience. Disabled people are no different in having a whole range of sexual desires. Yet barriers and stereotypes often inhibit the expression and enactment of these desires. LGBT meeting places may have steps or inaccessible bathrooms that prevent wheelchair users from entering (despite the access requirements in the Americans with Disabilities Act). Social groups may shun people with mental illnesses, cognitive disabilities, blindness, or obvious impairments. Public transportation may be insufficiently accessible to enable people with all kinds of disabilities to attend gatherings. All of these barriers can make it difficult for disabled queers to meet potential partners.
Even more limiting, for some, are the prevalent cultural messages—false impressions that disabled people are childlike, asexual, damaged, undesirable. Disabled queers often have to negotiate other people’s awkward, negative, or simply clueless reactions in order to establish relationships that might lead to romance and/or sex.
Many queer crips have responded by rejecting ableist definitions of sexual beauty and activity, offering more diverse and liberating possibilities for connection, attraction, and fulfillment. For example, lesbian writer and activist Connie Panzarino, whose extremely limited mobility made it difficult for her to be physically active during sex, candidly describes her many relationships with women. Writes Panzarino: “I learned to use my mouth, my breath and my creative voice to accompany my lover touching herself.” (pp. 235-236). Eli Clare, a disability/transgender/queer activist and writer, has called for a proud reassertion of sexual expression by LGBT people with disabilities. “I say it’s time for us to talk sex, be sex, wear sex, relish our sex, both the sex we do have and the sex we want to be having,” wrote Clare in 2002.”I say it’s time for some queer disability erotica, time for an anthology of crip smut, queer style” (Queer Disability Conference keynote).