Proceedings: Theorizing Queer Disabled/Deaf Experience: John B. Kelly

"Your Sexuality, Your Body, Get Over It!: The Liberatory Ethic of Queer and Disability Theory."

Queer-Disability Conference, SF CA, June 2002
John B. Kelly, Brandeis University

Is dignity something that some people have more than others, is it something you can lose? In other words, is it inherently shameful to be physically or cognitively dependent on other people, to drool or be incontinent; is it shameful to enjoy casual sex, have sex in public or for pay, to cross dress, to switch genders or to refuse to choose one? According to the dictates of able-bodied and straight normality, the answer is such an obvious yes that it never needs to be stated. Through its practices of marginalization, normality has demanded that we hide our disreputable differences if we are to be granted even quasi admission to the majority culture. Yet we are lured by the possibility of acceptance, and seduced into denying our own experience, thereby leaving behind our brothers and sisters who least measure up, normally speaking. I specifically mean the way disabled people are pressured to hide our impairments, to pretend that we are just like everyone else; the way that some very prominent gay people are now obsessed with the legalization of gay marriage, to both win respect and to civilize the unruly masses. Against these pressures, I will hold up the best of disability and queer theory, which make a simple but radical statement: that dignity is something inherent in each of us, in equal degree, that cannot be removed, no matter what -- whether by disability, disease and the dying process, or by non-normal sexualities and sexual practices. These theories both refuse to be assimilated to the normal, and offer hope to those caught in normal's web of a freer, more humane life.

After a little history of the concept "normal" and the creation of homosexual and crippled identities, I will talk a little about the resulting identity politics, its strengths and weaknesses. Then I will discuss how normality uses what Michael Warner calls "the politics of shame" to further separate our populations into the most and least acceptable.

Neither normality, disability, nor homosexuality existed as concepts in the West before the 19th century. The word "normal" came into use about 1840 following the deployment of statistics to measure averages and deviations from those averages among populations. Early statisticians thought that they were discovering either God's or natural laws, so the average quickly became equated with the moral and the good. Medical science began applying the concept of the norm to bodies and sexualities in the search for pathological deviations. It was only then that the modern conception of "homosexuals" and "crippled" people, as pathological others in societies of otherwise normal people, came into being.

In the pre-modern period, there was no concept of a normal way bodies should be and behave. All bodies were perceived as inevitably imperfect, as cultures looked to the ideal, which was attainable only by the gods of mythology and the heroes of ethics. The birth of extraordinary bodies (today's "congenital malformations" or "birth defects") was greeted with awe and wonder. Such a birth was a portent, a breaking in of the divine into human affairs, either for good or ill. There was no status as a disabled person.

Likewise, before the 19th century there was no talk about a sexuality that informed whole beings, no sexuality status. Rather, certain acts such as sodomy were forbidden and severely punished, but only rarely. Medical discourse, as Foucault so convincingly described in his History of Sexuality, Part 1, "discovered" homosexuality in order to disqualify it and the people tarred with it. It did the same with people who are now characterized disabled, comparing and marking off and noting inferiorities. Both groups were constructed as threats to family, nation, the germplasm, and so forth.

Although these identities were created through the forces of oppression, they also gave the people so marginalized a language to speak back for themselves, often in the same language by which they were disqualified. Organizing around a common identity has brought us together for mutual support and activist coalitions. Making that identity prideful, or discovering that such an identity is even possible, has made a huge difference in many of our lives. But identity politics has drawbacks.

First, identity by its very nature is restrictive: in organizing a movement for change, some people may be left behind. For example, in the 1970s, the independent living movement was founded with a definition of independence -- the cognitive ability to recruit and manage one's own care system -- that left behind those who for whatever reason could not or were deemed inappropriate for self managing.

Second, the identities that we embrace as liberatory are the same ones that have been given to us by the majority culture. So gay identity as a category of sexual orientation developed at the turn of the last century, while there are many other possible ways to group the genital activity of people.
In his wonderful book "The Trouble with Normal," Michael Warner describes how 19th century medical experts created a special category for such people by labeling as perverse the entire person, rather than condemning specific acts. As Warner writes:

The concept of perversion, as distinct from perverse acts, led to the concept of sexual identity (or its close kin, sexual orientation). Each distinguishes between identity and sex, between the person and the act, status and conduct. The doctors had inadvertently made it possible for their former patients to claim that being gay is not necessarily about sex. Homosexuals could argue that any judgment about their worth as persons, irrespective of their actions, was irrational prejudice. In so doing, they could challenge the stigma of identity, without in the least challenging the shame of sexual acts. To this day, a similar logic governs much of gay politics.

The official gay movement, Warner charges, has focused ever more narrowly on sexual orientation to the exclusion of other stigmatized identities and practices. The quest for gay marriage epitomizes this approach and represents the victory of heterosexual norms concerning the shame of sex.. In his 1995 book, "Virtually Normal," Andrew Sullivan writes that gay marriage "is, in fact, the only political and cultural and spiritual institution that can truly liberate us from the shackles of marginalization and pathology." The pathology he is referring to is those sexualities and practices most outside heterosexual norms.

Marriage is a privileging institution that can only exist by discriminating against other types of relationships and sexualities. "As long as people marry," Warner writes,

the state will continue to regulate the sexual lives of those who do not marry. It will continue to refuse to recognize our intimate relations -- including cohabiting partnerships -- as having the same rights or validity as a married couple. It will criminalize our consensual sex. It will stipulate at what age and in what kind of space we can have sex. It will send the police to harass sex workers and cruisers. It will restrict our access to sexually explicit materials. All this and more the state will justify because these sexual relations take place outside of marriage.

And yet advocates of gay marriage idealize it with the mystifying rhetoric of love and free choice.

The shame around the sex is everywhere. In Boston, where I live, the gay bathhouse "The Safari Club" thrived from its opening in 1993 until it was closed by health inspectors in 1999 -- for mostly technical reasons. At its closing, the club was doing almost $150,000 in business per month, about 10,000 visits worth. There was no organized opposition or protest to the closing. It would be hard to look conventionally respectable at a pro casual sex protest, especially for the considerable number of straight-identified men that almost certainly went there.

The identity that disabled people were handed by the majority culture was of a defective body, mind, senses, non normal appearance, or anything outside the ideal of the young to middle-aged fit male. We were tied to the body by a language of ability, which held that our inferiority and difference was the natural result of our bodies. Generally speaking, our response has been to minimize the effects of our impairments upon our lives, emphasize our similarities to the general population, and focus on removing societal barriers to the expression of our abilities. If these barriers are removed, many people believe, we would become normal.

A few years ago, I wrote into the British Disability Research list serve asking for advice about how to handle teaching in the face of the possibility of incontinence. The respondents were in agreement that, although it is legitimate and educational to discuss our "disabilities," i.e. how our impairments are used as an excuse to oppress us, it is best to leave impairment and especially "plumbing" issues to the side. This is the rehabilitation message which many of us received: keep our differences hidden, try to pass so that normals can disattend from our difference. We act sometimes as if it is shameful to be dependent upon another human being. We tout our independence.

Meanwhile, the greatest losers are those so-called able-bodied people who would never considered themselves disabled. The people who are afraid to go out unless they have their route plotted, bathroom to bathroom, like some connect the dots contest. The shame peddled in those Detrol ads, where the grandfather disappoints and perhaps even loses the love of his grandson by having to leave the fairground to pee. The shame of retirement communities that will not admit members who use a cane or wheelchair.

Most deadly has been the rise of the assisted suicide movement, with its constant talk of "death with dignity. Assisted suicide advocates keep talking about pain and the actual process of dying, but what they are really talking about is their shame around physical dependence and incontinence. So the Oregon assisted suicide law keeps being hailed as a success, despite the fact that two-thirds of the assisted suicide deaths list incontinence as a major reason for wanting to die. More and more people are listing "not wanting to be a burden" as a reason. This has occasioned no comment. A leading advocate gave the real reason: .

Pain is not the main reason we want to die. No. It's the indignity. I can speak for literally hundreds of people whose bedside I've sat at over the years. Every client I've talked to... they've had enough when they can't go to the bathroom by themselves. Most of them say, "I can't stand my mother, my husband wiping my butt." That's why everybody in the movement talks about death with dignity. People have their pride. They want to be in control.

In this politics of shame, what heterosexual and able-bodied majority cultures have done is to claim that their sexualities and practices, their bodies, are dignified, while ours aren't. What elements among the LGBTQ movement and among disabled people have done is to tacitly agree with this formulation, and to try to win acceptance by denying what the majority finds so distasteful. There are other, more productive, responses.

Most obviously, we can reject the shame and assert our difference with pride. Not just pride in a sexual orientation status, or in what disabled people can do, but pride in a range of sexualities, genders, and practices, and pride in all of our bodily manifestations, all our forms of dependence. Michael Warner takes another, provocative approach, in which he admits the shame of all sexuality, because of its loss of control, vulnerability, not to say the absence of clothes. In the queer ethic that he promotes, "shame is bedrock." "In those circles where queerness has been most cultivated, the ground rule is that one doesn't pretend to be above the indignity of sex.... The rule is: Get over yourself. Put a wig on before you judge. And the corollary is that you stand to learn most from the people you think are beneath you." What heterosexuals have done, and what the gay marriage movement wants to mimic, is to pretend that the sex within marriage, in private, is more dignified than other forms of sex.

The queer ethic rejects any pathologizing of consensual sex, but is also not tempted by the normal. Warner writes that "against assimilation, one could insist that the dominant culture assimilate to queer culture, not the other way around. Straight culture has already learned much from queers, and it shouldn't stop now. In particular, it needs to learn a new standard of dignity, and won't do this as long as gay people think that their 'acceptance' needs to be won on the terms of straight culture's politics of shame."

I don't know of a disability-related term which correlates to queer. But there are queer renegades everywhere. In her book "The Me in the Mirror," the late Connie Panzarino described her 1970s struggle to both work and receive attendant care. She had a newspaper photographer come out to her house and film her getting transferred out of bed in a Hoyer lift. "Some of my friends with disabilities were appalled," she wrote, "that I allowed myself to be shown to the able-bodied public in a vulnerable, dependent position because they felt that it would increase oppression by encouraging the stereotype of the 'helpless cripple.' I believed that in order to have our needs met we needed to stop trying to 'pass' in the able-bodied community and pretend that we were self-reliant because that fed the misconception that attendant care was a frivolity rather than a necessity for life support." Connie had no shame, and I think rejecting shame around the body, as ancient as it is, is the best way forward for disabled people.

We need to take the shame on directly, proclaim our dependence, and challenge so-called able-bodied people on their unwillingness to be dependent. Morrie Schwartz, the subject of the incredible best seller "Tuesdays with Morrie," recommended as he was dying from ALS that when we are dependent, we should indulge ourselves, revel in it. Just as babies do.

We should reject what I call the "ideology of ability," which says at its most basic that those with more physical or mental ability have better quality of life than those with less. We all know this to be untrue. Ability is what ability says it is. Anytime you use the word "can," you proclaim an ability. So Connie Panzarino wrote a poem saying "I can kiss for hours without coming up for air." She had a tracheostomy. So the fact that I can go to an outdoor concert and roll by thousands of people waiting plaintively in line for food -- I don't eat lunch -- could be claimed an ability.

Conversely, so-called able-bodied people need to be reminded about their bodies, as the Supreme Court blithely supports any discrimination against them, as long as they can brush their own teeth. Now that's shameful! It turns out that the most common disabilities in our society are held by people who most often identify as able-bodied: arthritis, bad back, respiratory problems, and so forth. And that leaves aside depression. Everyone who gets old, unless they die of a trauma, will collect a number of impairments. Someday it may become obvious that not being impaired is the exception, not the rule.

Ability and queer theory are radical and liberatory. They point not only to the end of our oppression, but to the loosening of the normalizing grip on those now on the other side of the body and sexuality binary.