Journal of Gay, Lesbian, and Bisexual Identity, Vol. 4, No. 1, 1999.

Dawn Atkins1 and Cathy Marston2

This article explores the intersections and fractures that disability theory and activism present to queer community. The authors begin by drawing upon a multiple axis approach from feminist theory, then discuss the problem of defining "disability" and "queer." They then explore the intersections and fractures of these identities and theories, hoping to raise awareness among queer activists and scholars and introduce them to conceptual and practical tools. In particular, disability studies offers a way to reconceptualize and ground theory and practice in the "messiness" of real bodies and to make visible the mythic "normate" against which cultural Others are defined.

KEY WORDS: disability; passing; queer; feminist theory.

In this article, we explore the intersection of being queer (lesbian, bisexual, gay, or transgendered) and disabled, for both individuals and community. Here even the terms we use are on shaky ground. What does it mean to be queer? Disabled? Is there such a thing as queer community or communities? We feel these are shifting identities defined both by the need for group resistance to ideals of the "norm" as well as by individual experience, making the common ground often full of fault lines.

We begin this article by discussing our theoretical framework of multiple axes, drawn from feminist theory. Next, we define the terms we use, and then discuss both the common ground and the fractures we see in these issues. It is our hope that this article and this special issue of the Journal of Gay, Lesbian, and Bisexual Identity will raise awareness about disability in queer activist and scholarly circles, providing theoretical concepts and considerations for exploration.

Recent feminist scholarship recognizes that oppressions and identity are interlocking and complex in everyday life. This sensitivity to difference is a hallmark of recent feminist thought, and an important component of its potential for social transformation. There is no hierarchy of oppression or identity, with one form competing over the other (Lorde, 1995; hooks, 1984). To encourage consideration of the connectedness and complexity of human oppression and identity, feminist media scholar Angharad Valdivia (1995) and feminist sociologist Patricia Hill Collins (1991) directly deal with the issue of difference via multiple, linked oppressions. Feminism and multiculturalism problematize the binary division of gender and black/white culture, respectively, according to Valdivia. Collins explains how the previous "additive models of oppression are rooted in the either/or dichotomous thinking of Eurocentric, masculinist thought" which quantifies and ranks people (p. 225). Replacing the additive models with an understanding of the interlocking axes (i.e., hooks) of difference creates possibilities for new paradigms.

Valdivia (1995) suggests studying identity through a "spectrum approach" that considers all the components of our identities-i.e., the multiple sites of oppression "a poor, Third World, lesbian woman of color" might face-keeping in mind that a "multipronged analysis in a culture replete with binary explanatory frameworks is contradictory, as anyone involved in that experience will tell you" (p. 17). These spectrums, Valdivia argues, change with context such as: trips down the socioeconomic ladder, access to power, geography, and shifts in time (p. 19). This mode, again, avoids the additive approach.

In this view, differing oppressions are not interchangeable but they are interactive. By looking at how the "matrix of domination is structured," it becomes possible to explore how multiple oppressions work on several levels and within different contexts. Collins (1991) outlines these levels as: 1) personal biography, 2) group or community, and 3) institutional (p. 227).

What this means in the context of this article is that being queer or being disabled are not interchangeable nor separable for those who experience them. It also means that like race, class and other issues, the queer communities need to come to terms with their differences (power included) not only from the heterosexual world, but also between each other.

The politics of identity are crucial to opening a space for disability issues. What does it mean to label yourself "disabled"? Cathy (co-author of this article) struggled with this: from calling herself merely injured, since repetitive strain injury (RSI) is a work-related injury, to finally settling on disabled. She encountered strong reactions along the way: one mentor told her, "You're healthy, just injured"; another mentor, when she was relating how difficult it was to hunt for a job since she could no longer type by hand, snapped at her in disgust, "You're making yourself sound disabled!" In the end, Cathy came to the same realization as feminist disability philosopher Susan Wendell (1989) did when she became ill with chronic fatigue syndrome: that with a changed body, she couldn't escape society's definitions of what disability is and the stigma associated with it.

Dawn's (co-author of this article) identity as disabled is complicated by multiple disabilities. In her case, being born asthmatic, learning later she also inherited her perceptual learning disability, and finally developing curvature of the spin in her twenties, has meant a layering of invisible disabilities and differing levels of acceptance both within and without. It was relatively easy to accept being asthmatic as most of her family has the condition. But outsiders rarely recognize this common condition as a disability. A diagnosis of a learning disability came as a relief after suffering with a lack of support or accommodation for years. But the back pain and mobility limitations that came with the spinal condition were the hardest to accept personally, in part, because both she and others felt she had already exceeded "her quota" of disabilities. It seems that people are only socially allowed one disability at a time. With multiple disabilities, you risk being considered a "hypochondriac," even when the disabilities are clearly documented.

Definitions of disability in the United States are couched historically in Protestant and Liberal notions of welfare and charity (Linton, 1998; Shapiro, 1994; Matthews, 1983). While the "deserving poor" historically has included "the disabled," disability is still also seen as an individual medical problem or affliction-not a societal issue.

Joseph Shapiro (1994) notes that there is no expert consensus on what constitutes disability and, like any defining process, the definition affects the statistics. He says that most researchers define it as "activity limitation." However, disability rights advocates believe the definition should "include health conditions that may not be limiting but still stigmatize or cause discrimination" (Shapiro, 1994, p. 7)-both are concepts included in the definition of disability in the Americans with Disabilities Act (ADA).3 Figures on the number of people with disabilities in America range from 35 million (1991 figure from Institute of Medicine) to 49 million (1994 census report) to looser estimates of 120 million, when any disease or chronic health condition is included. As Shapiro (1994) stresses, "even at the lowest estimate, disabled people could be considered the nation's largest minority" (p. 7).

Feminist disability theorist Susan Wendell (1989) criticizes the United Nations' definitions of and distinctions between impairment, disability, and handicap for making "a shaky distinction between the physical and the social aspects of disability" (p. 107). The first two terms deal specifically with physical and/or psychological inability to perform to a norm-a norm about the appropriate level of performance, dependent on cultural paradigms about health.

Wendell herself prefers using the term "disability," and emphasizes her belief "that disability is socially constructed from biological reality" (1989, p. 107). Feminist disability scholar Rosemarie Thomson (1997) also agrees with this culturally situated definition of disability. Thomson writes that disability is a "representation" of how bodies are interpreted and compared in our culture. She, like Wendell, believes that this definitional process results in value judgments: "Disability . . . is the attribution of corporeal deviance-not so much a property of bodies as a product of cultural roles about what bodies should be or do" (p. 6).

Thomson's feminist cultural analysis of the "disabled figure" provides a strategy to dissolve dualistic ways of viewing difference and to capture a more complex view of disability. Thomson discusses the idea of any deviant Other as inherently defined as outside what she calls "the normate": "the social figure through which people can represent themselves as definitive human beings" against "the array of deviant others whose bodies shore up the normate's boundaries" (p. 8). This cultural idea of what is normal, she writes, is so bound up with the social order, that it only describes a very narrow minority of actual people. Thomson argues that the normate can only be uncovered, though, when analyses examine:

Thomson herself scrutinizes ideas about disability by examining American cultural discourses of liberal individualism and attitudes about the body, gender, and race in historical context.

So, to be defined as "disabled" is to be defined purely in terms of cultural constructs surrounding physical difference from a mythic norm. For, as Thomson (1997) notes, although actual physical impairments of disability are usually specific to certain body parts or functions, to be physically different in even only one way classifies an entire person as disabled:

The term "disability" is, thus, misleading in its erasure of other qualities in an individual, but also in its erasure of differences between different disabilities. The term "disability" itself covers a wide variety of bodily realities, from psychiatric disabilities, to hearing impairments, to mobility impairments. By using the very term "disability," there is acknowledgment of a mythic normate "ability" of which most of us cannot attain. Despite this postmodern conundrum about the problematic use of such labels, disability scholar Simi Linton (1998) believes "disability" remains an important cultural and historical concept for study and for coalition. These issues of labeling and decisions to reappropriate previously unsavory labels for community activism resonate with the efforts of queer scholars and activists. Thus Thomson's concept of the normate provides a tool for revealing nonqueer biases of society and academia, in addition to nondisabled bias.

We understand that the word "queer" is a contested term among those who consider themselves lesbian, gay, bisexual, and/or transgendered. That as a reclaimed term like "dyke" or "faggot," it can be emotionally loaded and, for some people, carries the negative associations. Yet, the power of the term is one of the reasons we chose to use it. The original meaning "different" is important to our arguments of the way these identities play themselves out as a response to a perceived norm. "Queer" then becomes both strategy for inclusiveness and linguistic choice to emphasize difference from a perceived norm.

There are inherent problems with inclusive terms as well. Lesbians pointed out how "gay" can erase differences between the experiences of men and women, thereby prompting the use of both gay and lesbian as distinct categories. Bisexuals and transgendered people have also made claims to the importance of recognizing both commonality and difference with gays and lesbians. The use of "queer" may allow a unifying term that can point to the difference from the heterosexual norm, but may mask important differences in experiences. We hope this is not inherent in the term but in its use. It becomes important to emphasize that we recognize that all the issues we will address will have important differences depending on sexual histories and identities. For instance, there are significant gender differences in the experiences of women and men, differences between the experience of being bisexual or gay/lesbian, and differences for those who have a non-conforming gender identity and/or history.

Another challenge to our argument is the use of "queer community." Again, here we chose the terms to invoke shared connections among lesbian, bisexual, gay and transgendered people. We recognize that these are in many ways different, but often overlapping communities, that vary not only with identity but with other locations of geography and structure, such as race, class, etc. We also recognize that because of the difficulties with multiple differences and access, many may not see themselves as part of those communities that do exist.

Yet, we feel the implications of this work are important for all those who identify as lesbian, bisexual, gay, transgendered and/or queer. Even more importantly, we see these issues as crucial for creating and maintaining communities where we may all support each other. One benefit of coming out is the ability to recognize others with whom you can create support systems based on common experiences. So it is in this spirit of inclusive community creation that we offer this critique of queer community and disabilities.

Common ground is often made through common experience. A key concept shared by activists and theorists dealing, for example, with African American, with disability, and with queer issues is the notion of "passing." As lesbian, bisexual, gay, and/or transgendered people we share the experience of having to negotiate passing or coming out on a daily basis. Our differing sexual and gender histories will result in different paths in this process, and is it never fully completed. Unlike sometimes more visible markers and despite "gaydar," most of us weren't born "looking gay." Instead, the cues that do or do not mark our sexual orientation are multiple, historically shifting, and to some degree manipulated in response to our circumstances.

To be "out" and to publicly proclaim and/or visibly mark nonheterosexual orientation is to risk discrimination, social rejection, and even physical violence. Yet, to "pass"-to allow the assumption of heterosexuality-is to risk erasure, to limit the depth of relationships, and to risk eventual disclosure, with the resulting discrimination, social rejection, and possible violence. Additionally, we risk isolation from others who would share our experiences and, possibly, our lives.

The issue of passing is derived from the social stigmatization of the characteristic in question-and from the potential to control information about the stigma. Erving Goffman's (1963) work on stigma clearly illustrates the on-going and complex issue of this process. Ironically, the term "stigma" is derived from the Greek in reference:

Goffman divides the plight of those with stigmatized aspects into two categories: the discredited and the discreditable (p. 3). In the first, discredited individuals are those whose stigmatized aspect is visible or known. The second, discreditable individuals are those who may hide the potentially stigmatizing aspect. This leads to the dilemma of passing. Persons who conceal an important aspect of themselves from others can risk tremendous psychological strain and is always at risk of being revealed, but may escape the discrediting effects for as long as they can pass. The decision to pass or disclose must be renegotiated in each new situation.

This process of the management of such a characteristic may be crucial in the development of identity. According to Richard Troiden (1985), identity is an "organized set of characteristics an individual perceives as definitely representing the self in relation to a social situation" (p. 102).

In our view, because those characteristics are perceived as important, whether disclosed or hidden, they become markers of identity. Sexual orientation, then, gains its importance as an identity marker in the way it can determine acceptance or rejection in social relations. Although the feelings of sexual desire may be present previously, the identity as lesbian, bisexual, gay, and/or transgendered gains significance as an identity because it has social consequences.

In a similar way, through passing or coming out, being disabled can become a core part of a person's identity. Being disabled has physical and social consequences-the disabled body is a socially rejected body (Wendell, 1996). Although the stigma varies tremendously in content and with different disabilities, they all result in some risk of discrimination, social rejection, and, yes, violence. One important difference between disability and sexual orientation is that some disabilities are difficult or even impossible to hide. This does not make passing a non-issue. With both disabilities and sexual orientation, there are some people who do and others who do not pass. Yet, with disabilities, there are many who cannot pass even were they to wish it. This can lead to differing sets of difficulties between those who can and cannot pass.

Rosemarie Thomson (1997) explains that in the initial encounter between two people, an enormous amount of information must be organized and interpreted simultaneously with each participant probing the explicit for the implicit, preparing responses based on both subtle and obvious characteristics. When this encounter is between a nondisabled and a visibly disabled person, the disability may come to skew and dominate the perceptions of the non-disabled person. The interaction is often strained and uncomfortable for both parties. It usually becomes the responsibility of the disabled person to neutralize or smooth-out these difficulties. Disabled people are forced to learn to manage relationships from the beginning-to "use charm, intimidation, ardor, deference, humor or entertainment to relieve nondisabled people of their discomfort" (Thomson, 1997, pp. 12-13). Only then can the stigma be neutralized and the relationship be sustained and even deepened.

If the disability is invisible, the disabled person is confronted with the choice of whether to disclose the disability and when. For those who at least visually pass as nondisabled (or temporarily able bodied), they may avoid the stigma associated with the rejected body. Sherree Clark (1996), in her poem titled "passing," expresses the avoidance of the pity associated with disability as a benefit. But there are many negative consequences of not disclosing or disclosing later. Nondisabled people (like heterosexual with non-heterosexuals) may react to the later disclosure as having been deceived.

Passing as non-disabled can have terrible personal consequences both in the self-esteem and in the limiting of connection with others. It can entail ignoring the limitations of the body and can mean risking real physical harm to ourselves. For example, someone with chronic pain risks injury by hiding this bodily reality-or, more generally, having a physical limitation breached. Persons with an emotional/mental disability may risk having a trigger set off by hiding their disability. Clark (1996) also expresses this downside of passing in her poem by portraying different negative angles of passing-as invisibility, as "almost failed" (or barely acceptable), as losing the opportunity to benefit in potential cures. As Linton (1998) writes, our culture likes to think of people as able to "overcome" their disabilities, suggesting that a person's disability no longer limits them and that they are a success. But, as she adds, what is usually overcome is the social stigma of having a disability:

Again, the onus is on the individual to overcome, not on society to consider civil rights legislation, affirmative action, or attitudinal adjustment.

Social acceptance can be lost when people find out one is disabled, but it can also be risked by passing as non-disabled. If Dawn does not tell someone that she is learning disabled and therefore has a poor visual memory, they may assume that she is being rude when she doesn't recognize them at the grocery store. Cathy is not believed when she says she has chronic pain and back/neck problems; people say, "You look so normal." If someone who has a chronic illness isn't able to share that with people, they may assume that she is "putting them off" when she cancels an appointment.

Yet, coming out is not a one-time event. Each encounter, and sometimes even long-term relationships, require constant negotiation. Non-disabled people may have difficulty acknowledging and relating to the person with a disability, requiring continuous disclosure. They may be unaware of the abilities or limitations of the disabled person and their consequences in daily life and need educating. Each new discussion brings with it the potential discomfort and/or rejection.

Many, regardless of whether their disability is visible, would prefer to be "out" about their disabilities for political reasons. The reasons for this are similar to those in the queer rights movement. Disability activists feel it is important for the numbers and needs of disabled people to be publicly recognized. When people realize how many people are disabled and/or queer (among other differences), there is a possibility for greater acceptance.

In addition to passing, those who identify as queer and those who identify as people with disabilities share common elements of stigmatization. First, both disabilities and nonheterosexuality are treated as "master status" stigmas that often cancel perception of other qualities in the person. Second, both are often treated as socially contaminating. And third, they are socially isolating-but also provide an opportunity for social coalition and identity.

Not only is a disability (often in only one part of the body) seen as making the entire person "disabled," often multiple disabilities are not recognized. This is reminiscent of race, where a person with some African ancestry is seen as "black" and other ancestries are often dismissed. So too, being queer is usually seen as determining the entire character of the person. In this framework, it becomes almost impossible, for instance, to be acknowledged as a gay African American with a disability. The force of the master narrative emphasizes one axis of difference, usually the most visible, over all others.

Thomson (1997) argues that figures who defy classification into absolute categories "such as mulattos, freaks, transvestites, bisexuals, and other hybrids-elicit anxiety, hostility or pity and are always rigorously policed" (p. 34). This fear seems related to a fear of contamination, of the idea that if identities are fluid, one's own place in the hierarchy is not assured.

Regardless of nature/nurture debates around homosexuality, the idea of contagion and recruitment is still a popular homophobic theme. To nullify fear of becoming queer, the gay rights movement has often relied on promoting acceptance based on the essential nature of queer identity, downplaying complicated sexual histories while at the same time recognizing that some homophobes may have "secret gay feelings." This strategy seems to rely on neutralizing the undercurrent of fear that sexual orientation is more fluid and, therefore, anyone may be "at risk" of the stigma.

Similarly, many disability theorists have pointed out that the fear and distancing from disabled people is partially a response to the fear of becoming disabled (i.e., Wendell, 1989 and 1996). Everyone may, at any moment, become disabled. And most people, if they do not die young, will become disabled. To avoid confrontation with the vulnerability of the body, those not yet disabled stigmatize those with disabilities.

Another shared factor that makes our discussion of community even more crucial is the need to find and/or create community for both queers and people with disabilities. People from other stigmatized groups based on "race," ethnicity, or religion, for example, may be raised among others who share their stigma that may be ameliorated by the group's internal values. Yet, most queers and most disabled people grow up with heterosexual and/or nondisabled people, and continue to live among them, absorbing their values and assumptions including the devaluing of their own differences (i.e., Linton, 1998; Wendell, 1996). This means that in order to change these views, value their own experiences, learn from others, and fight oppression, most queers and people with disabilities must look to others who share their stigma and identity in society in order to have an accepting community.

Here we come to the problem for those of who share multiple oppression in this system, and in this article-that of being queer and disabled. Being queer does not ensure an understanding of disabilities, and being disabled gives no assurance of acceptance of nonheterosexuality. This means that when we try to find community, we may find no where to go. In this next section, we focus on problems that people with disabilities find when they are part of a queer community.

In addition to the internalization among queers of the fear of body vulnerability and the primacy of sexual orientation over other markers of difference, we speculate that historical pathologizing of homosexuality may lead to a "normalizing" of homosexuality. Beginning in the 1900s, and continuing to some degree today, the medical and psychological system classified homosexuality as deviant and sought to locate the cause as a physical or mental impairment. For example, one of the first victories of the gay rights movement was the removal of homosexuality from the American Psychiatric Association's classification of a disorder in 1973 when homosexuality was finally deleted from the Diagnostic and Statistical Manual of Mental Disorders III (DSMIII) (Bem, 1993, p. 94). However, some therapists still treat homosexuality as a psychiatric disorder. So, lesbian, bisexual, gay, and transgendered persons may fear being medicalized, in a similar way to how people with disabilities are medicalized. The fear of the increased stigma of two medicalized identities (queer and disabled) may lead to a distancing of anyone who is disabled, particularly if they are mentally disabled. It also may result in those who have disabilities being multiply pathologized.

For instance, some queer people with disabilities have been told by both family and therapists that they were only gay because they could not find a straight relationship. The idea that gay is a default is damaging to both queers and to people with disabilities who may also be rejected in the gay community.

A major barrier to acceptance is the acknowledgement of the sexuality of persons with disabilities. Men and women with disabilities are often represented as weak and sexless (Finger, 1993)-unless they are shown as "overcoming" their disabilities by coming closer to nondisabled standards of beauty and health (i.e., Tremain, 1996). As Shelley Tremain (1996) argues, "if one assumes that disabled persons are asexual, then one cannot conceive the existence of disabled dykes" (p. 15)-or any other disabled queer person because disability is simplified as asexual while queer identity is simplified as sexual.

Both disability theory and queer theory, however, challenge the idea of what sex is-specifically that sex is exclusively genital specific. Sexual identity is based on being a sexual being, and even a valorization of the sexual. Feminist and queer scholars and activists often embrace our bodies and desires, but forget them when they stop working within "normal" parameters (i.e., Tremain, 1996; Thomson, 1997). What happens when you can't be sexual? How do you love your body when it hurts? You must have a different conception of sex to demystify the notion that disability is asexual. Sex is defined too narrowly, which requires us to ask: What is erotic within different bodily contexts? What does sex mean?

Several pieces in Tremain's (1996) disabled dykes anthology explore this issue. Margot Louis (1996) in her poem, "full day," begins: "though I can't walk a block, we spent nine hours/one day in bed (with a short break for lunch)" (p. 70). In this one sentence, Louis shatters the notion that a disability in one part of her body means her whole body is disabled. She also complicates traditional ideas of stamina as just showing physical strength through walking-here she clearly has the stamina to play with her lover all day.

Daphne Hill (1996) in her prose piece, " . . . and I will have sex again," candidly shows her struggle to move beyond the idea that sex and orgasm are genital specific, as she comes to terms with partial-body paralysis. Sex becomes eating, desire in her chest, erotic in the ordinary (ballet, plays, hummingbirds, gazing at a lover), moving beyond the clitoris and penetration: "I come into arms of pulse and touch, tender, jingle, soft light touch on skin, hair, and lips . . ./She traces a trail on my arm which reaches right to my core, shaking my head and my loins" (p. 76).

People who are queer and disabled must deal with both the stereotypes of disability and of "deviant" sexuality. Kenny Fries (1998) writes about this latter stereotype: he was talking with a nondisabled acquaintance who asked him if he liked pain and humiliation. As he explored the issue further, the questioner said he'd known "one disabled guy in Los Angeles" who said he needed to experience pain and humiliation to get off. This is a clear erasure of differences between gay men with disabilities by assuming they all like the same thing, as well as a fetishizing of disability.

Fries also shares an anecdote of a friend who is a quadriplegic, who says that lovers are afraid they'll break him. This, too, erases differences between people with disabilities. However, it also raises the issue of sexual competency: the fear of not knowing what to do with a disabled lover's body. This fear ignores the reality that nondisabled people have different bodies, too. Such fear reveals the assumptions that sex is purely physical and body-based, and that all sex acts are the same. Such assumptions erase richer understandings of sex as a deeper connection with different people.

Fries (1998) grapples with the issue of how power might "play itself out in a relationship between a disabled gay man and a nondisabled gay man" (p. 320). Of course, other queer relationship configurations need to be considered. To begin, Fries writes that a disabled person with a nondisabled partner gets to use the nondisabled partner as access to the nondisabled world. This also becomes a status issue: the disabled person is seen as good enough to "get" a nondisabled partner. He also mentions that the nondisabled partner gets to take care of the disabled partner, raising power and codependency issues. However, he doesn't mention how the nondisabled partner can use the disabled partner to define self in opposition and superiority to the disabled partner. Another aspect is whether a disabled person is comfortable with another disabled person as a lover. Internalized ableism may lead people with disabilities to seek out only nondisabled lovers to "compensate" for their own feelings of inferiority. Or conversely, they may seek out only disabled lovers because of their desire for shared understandings and experiences.

Again, there are other issues to consider, such as dependent care in a homophobic, ableist society. The case of Sharon Kowalski and her paralysis after a car accident combines issues of sexism, heterosexism, and ableism-and, as such, drew the attention of the disability and gay rights communities. There was the assumption that because she was disabled, she was asexual; the assumption that if she was sexual, she was heterosexual; and the assumption that because she was a woman, she needed paternal care. Kowalski was unable to speak orally, and her ability to speak through typing was not seen as showing mental competence. Her father was granted custody and refused to allow Kowalski's partner, Karen Thompson, visitation-suggesting Thompson might sexually abuse Kowalski because she was a lesbian (Griscom, 1992).

Ideals of what it means to "look gay" or to "look like a dyke" usually leave out disabled queers. Particularly as queer media becomes more commercial, the images presented seem increasingly narrow. Gay men's "cult of the body" (Atkins, 1998; Fries, 1998; Signorile, 1997) has become a place where only a particular type of look and fitness is valorized:

Even in lesbian communities, the valorization of strength and the "lesbian chic" may leave many women unable to be a "real dyke." For example, one of Dawn's ex-lovers explained that dykes had to be physically strong and would make jokes about Dawn being a "wimp" when her ribs dislocated.

We raise the issue, based on our personal experiences, of whether queer, and other Left, organizations accommodate people with disabilities. In doing so, we suggest a problem with Classical Liberal ideology where disability is concerned: the idea of "no special privileges" and that "we're just asking for equality." Bodily variation does require universal design in considering physical construction of buildings and transportation in society, as well as consideration of accessible routes for travel and marches.

Dawn has encountered difficulties with smoke. For example, at one Pride March in San Francisco, the gay man next to her in the crowd not only wouldn't put out his cigarette when she started having as asthma attack, but rather, he deliberately blew smoke in her face when she asked. So many queers smoke (or burn incense) that finding events where she can breath has been an on-going problem.

Cathy has encountered problems with e-mail, or putting anything in a written form, because her disability makes typing and computer work painful. She experiences form and technology as social barrier (at the same time another technology, a voice computer, helps her somewhat navigate this socially created barrier), even within feminist communities and classes that purport to celebrate difference and alternative forms of knowledge and expression.

Kenny Fries (1998) relates his struggles to make OutWrite, the national gay and lesbian writers conference, accessible. Complaints in 1991 led to accessibility in 1992. However, the 1993 conference had accessibility problems:

Shelley Tremain (1996) writes that even when nondisabled dyke cultural workers do include disabled dykes, they still demean them by not providing materials in alternative formats or by not organizing "events which are accessible to Deaf, and Hard-of-Hearing dykes . . ." (p. 17).

Disabled lesbian and bisexual women, in Sara Axtell's study (in this volume), describe barriers to accessing their communities. These barriers include attitudes, community leadership and priorities, and institutional barriers such as limited physical access. Axtell's study participant, Laurel, expresses a desire to find a community where she can be her "whole self." Laurel believes she will have to build such a community herself.

While queer studies is currently in danger and under fire from the conservative right, disability studies is beginning to be recognized as a legitimate field (Linton, 1998; Monaghan, 1998). However, like the struggles of queer studies, disability studies must fight not only attitudes, but historical conceptualizations of disability and of how academia itself is structured. Disability scholars, such as David Mitchell and Sharon Snyder (1997) and Linton (1998), point out that because disability has been seen as deviant and as something to be cured, the study of disability has been the purview of the applied sciences. Overcoming this structural barrier in academia will mean challenging the livelihood of rehabilitation experts, psychologists, doctors, "special education" teachers, and others who have a vested interest in maintaining stigmatizing, medical-model definitions of disability. In fact, at the 1998 Society for Disability Studies conference, Paul Longmore, a disability studies researcher and activist at San Francisco State University, warned attendees that researchers doing traditional medicalmodel research on disability were trying to capitalize on heightened awareness by claiming that they do "disability studies" in their grant applications.

Tremain (1996) argues that nondisabled dyke writers, theorists, and activists "rarely, if ever, depict disabled dykes, our bodies, or our sexual practices" and that lesbian and feminist theories do not "grapple with the ways in which ableism and disableism compound the effects of the lesbophobia, racism, anti-Semitism, classism, ageism, and sexism which disabled dykes variously face" (p. 16). Indeed, disability scholars such as Thomson (1997), Wendell (1989), and Mitchell and Snyder (1997) have only recently begun to examine the humanities from critical and feminist perspectives, revealing the nondisabled bias in humanities research.

For example, Mitchell and Snyder (1997) argue that most of the recent scholarship on "the body" has ignored a disability perspective. Literature and these studies of "the body," in fact, only recognize disability as a metaphor for "nearly every social conflict outside of its own ignoble predicament in culture" (p. 12). Mitchell and Snyder also critique postmodern theory and cybertheory for merely using disability in relation to technology:

Mitchell and Snyder (1997) also specifically implicate the metaphor of prosthetic identification used in cybertheory. This metaphor suggests that ablebodied users of technology are functioning like persons with disabilities who use assistive technology or prosthetics-a dangerous assumption that leaves out the specificity of the different experiences of people with different disabilities.

The theories and concepts that Mitchell and Snyder critique show the problem of not including a disability perspective in research, of not considering context, and of not grounding theory in materiality and real bodies. Thomson (1997) writes that "[d]isability, perhaps more than other differences, demands a reckoning with the messiness of bodily variety" (p. 23).

As Wendell (1989) reminds us, we all age. "Age is disabling. Recognizing this helps us to see that disabled people are not `other,' they are really `us.' Unless we die suddenly, we are all disabled eventually" (p. 108). So, if people with disabilities are us, why the ignorance and misunderstandings? Wendell argues that the oppression of people with disabilities comes from the lack of room in our cultural space for real, feeling bodies. She believes a lot of our experience with our bodies goes underground, because there's no other way of expressing it. Disability, according to Thomson (1997), subverts the liberal American ideal that everyone can become a master of destiny and self (p. 41). "The disabled body stands for the self gone out of control, individualism run rampant" (Thomson, p. 43).

This idealizing of and alienation from the body comes from a desire to control the body, something that feminist theorists have analyzed in respect to our patriarchal culture. "Idealizing the body and wanting to control it go hand-in hand; it is impossible to say whether one causes the other" (Wendell, 1989, p. 113). In such a world, Wendell argues, those who cannot control their bodies are seen as failures; health is seen as a moral virtue. Thomson (1997) explains this concept of health as virtue via Melvin Lerner's (1980) "just world" theory, which dictates that "the human need for order and predictability gives rise to a belief that people get what they deserve or that things are the way they should be" (p. 36). This doctrine, Thomson argues, provides a psychological safeguard against the randomness of experience, but results in victim-blaming and scapegoating of those who are different.

Western medicine plays into the myth that the body can be controlled by directing research and medical care "toward [more] life-threatening conditions than toward chronic illnesses and disabilities. Even pain was relatively neglected as a medical problem until the second half of this century" (Wendell, 1989, p. 114). This funding and research focus sets up the doctor as a "hero" who can control the body. Those persons with disabilities, who cannot be simply "cured" within this system, are seen as abnormal and even at fault for their disabilities. Queer theorists and activists may be especially sensitive to similar cultural issues of blame with the HIV epidemic, as gay men are seen as "responsible" for HIV and issues of "curing," as lesbian, gay, bisexual, and transgendered persons may be seen as merely in need of "curing" (Miller, 1998).

This lack of a disability perspective in medicine and culture harms everyone, because it ignores the reality that most of us will need to learn to cope with long-term illness, and "how to live with limitation, uncertainty, pain, nausea, and other symptoms" when doctors cannot simply make them go away (Wendell, 1989, p. 115). In this case, when we make people with disabilities the "Other," we are "othering" our own bodies, as well. So, what might happen to our view of our bodies if we began to look at it from a disability perspective? Thomson (1997) believes that incorporating this perspective has the potential to enrich cultural meanings of our bodies and transform them (p. 37). Thomson extrapolates from queer theorist Eve Sedgwick's (1990) distinctions between a "minoritizing" view of difference, which limits difference to the concerns of a narrow population and a "universalizing" view of difference which sees issues surrounding a particular area of difference as important in the lives of people across the spectrum of identity and oppression. "Disability studies should become a universalizing discourse in the way that Sedgwick imagines gay studies and feminism to be" (Thomson, 1997, p. 22). Although we understand the negative Enlightenment baggage associated with the term "universalizing," we would see the term defined more in the spirit of feminist cultural scholar Chela Sandoval's (1984) notion of "politics of coalition." Instead of erasing difference, a universalizing discourse could create coalition among different groups around a common goal.

Disability theory provides a recognition of the social construction of labeling terms, without falling into the bind of deconstruction and abstraction of postmodern plasticity by continually grounding itself in the "messiness" of bodily variety. Disability theory also provides the notion of the "normate" against which all cultural Others are defined. But disability studies also provides practical tools for activists and all of us who inhabit bodies.

1Doctoral candidate in Anthropology at the University of Iowa, Iowa City, IA 52242.

2Doctoral candidate in the School of Journalism & Mass Communication at the University of Iowa, Iowa City, IA 52242.

3For example, conditions that may not cause physical limitation, but still stigmatize individuals include fat/obesity and facial scars.