issue 233 - July 1992
Why shouldn't disabled people have sex or become parents?
Anne Finger examines one of the deepest and most damaging prejudices.
Before she became a paraplegic, Los Angeles resident DeVonna Cervantes liked to dye her pubic hair 'fun colours' - turquoise, purple, jet black. After DeVonna became disabled, a beautician friend of hers came to the rehabilitation unit and, as a Christmas present, dyed DeVonna's pubic hair a hot pink.
But there's no such thing as 'private parts' in a rehab hospital. Soon the staff, who'd seen her dye job when they were catheterizing her, sent the staff psychiatrist around to see her. Cervantes says that he told her: 'I know it is very hard to accept that you have lost your sexuality but you don't need to draw attention to it this way.' Cervantes spent the remainder of the 50-minute session arguing with him, and, in perhaps the only true medical miracle I've ever heard of, convinced him that he was wrong - that this was normal behaviour for her.
Cervantes' story not only illustrates woeful ignorance on the part of a 'medical expert'; equating genital sensation with sexuality. But it shows clearly a disabled woman's determination to define her own sexuality.
Sadly, it's not just medical experts who are guilty of ignoring the reproductive and sexual rights and needs of people with disabilities. The movements for sexual and reproductive freedom have paid little attention to disability issues. And the abortion rights movement has sometimes crudely exploited fears about 'defective fetuses' as a reason to keep abortion legal.
Because the initial focus of the women's movement was set by women who were overwhelmingly non-disabled (as well as young, white, and middle-class), the agenda of reproductive rights has tended to focus on the right to abortion as the central issue. Yet for disabled women, the right to bear and rear children is more at risk. Zoe Washburn, in her poem, 'Hannah', grieves the child she wanted to have and the abortion she was coerced into: '... .so she went to the doctor, and let him suck Hannah out with a vacuum cleaner... The family stroked her hair when she cried and cried because her belly was empty and Hannah was not only dead, but never born. They looked at her strange crippled-up body and thought to themselves, thank God that's over.'
Yet the disability rights movement has certainly not put sexual rights at the forefront of its agenda. Sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain. It's easier for us to talk about - and formulate strategies for changing - discrimination in employment, education, and housing than to talk about our exclusion from sexuality and reproduction. Also, although it is changing, the disability rights movement in the US has tended to focus its energies on lobbying legislators and creating an image of 'the able disabled'.
Barbara Waxman and I once published an article in Disability Rag about the US Supreme Court's decision that states could outlaw 'unnatural' sex acts, pointing out the effect it could have on disabled people - especially those who were unable to have 'standard' intercourse. The Rag then received a letter asking how 'the handicapped' could ever be expected to be accepted as 'normal' when we espoused such disgusting ideas.
Because reproduction is seen as a 'women's issue', it is often relegated to the back burner. Yet it is crucial that the disability-rights movement starts to deal with it. Perhaps the most chilling situation exists in China where a number of provinces ban marriages between people with developmental and other disabilities unless the parties have been sterilized. In Gansu Province more than 5,000 people have been sterilized since 1988. Officials in Szechuan province stated: 'Couples who have serious hereditary diseases including psychosis, mental deficiency and deformity must not be allowed to bear children'. When disabled women are found to be pregnant, they are sometimes subjected to forced abortions. But despite widespread criticism of China's population policies, there was almost no public outcry following these revelations.
Even in the absence of outright bans on reproduction, the attitude that disabled people should not have children is common. Disabled women and men are still sometimes subject to forced and coerced sterilizations - including hysterectomies performed without medical justification but to prevent the 'bother' of menstruation. Los Angeles newscaster Bree Walker has a genetically transmitted disability, ectrodactyly, which results in fused bones in her hands and feet. Pregnant with her second child, last year, she found her pregnancy the subject of a call-in radio show. Broadcaster Jane Norris informed listeners in a shocked and mournful tone of voice that Bree's child had a 50-percent chance of being born with the same disability. 'Is it fair to bring a child into the world knowing there's two strikes against it at birth?... Is it socially responsible?' When a caller objected that it was no one else's business, Norris argued, 'It's everybody's business.' And many callers agreed with Norris's viewpoint. One horrified caller said, 'It's not just her hands - it's her feet, too. She has to [dramatic pause] wear orthopaedic shoes.'
The attitude that disabled people should not have children is certainly linked with the notion that we should not even be sexual. Yet, as with society's silence about the sexuality of children, this attitude exists alongside widespread sexual abuse. Some authorities estimate that people with disabilities are twice as likely to be victims of rape and other forms of sexual abuse as the general population. While the story of rape and sexual abuse of disabled people must be told and while we must find ways to end it, the current focus on sexual exploitation of disabled people can itself become oppressive.
As Barbara Faye Waxman, the former Disability Project Director for Los Angeles Planned Parenthood states, 'The message for disabled kids is that their sexuality will be realized through their sexual victimization... I don't see an idea that good things can happen, like pleasure, intimacy, like a greater understanding of ourselves, a love of our bodies.' Waxman sees a 'double whammy' effect for disabled people, for whom there are few, if any, positive models of sexuality, and virtually no social expectation that they will become sexual beings.
The attitude that we are and should be asexual seems to exist across a broad range of cultures. Ralf Hotchkiss, famous for developing wheelchairs in Third World countries, has travelled widely in Latin America and Asia. He says that while attitudes vary 'from culture to culture, from subculture to subculture,' he sees nearly everywhere he travels, 'extreme irritation [on the part of disabled people] at the stereotypical assumptions that people make about their sexuality, their lack of it.' He also noted: 'In Latin American countries once they hear I'm married, the next question is always, "How old are your kids?"'
Some of these prejudices are enshrined in law. In the US, 'marital disincentives' remain a significant barrier. To explain this Byzantine system briefly: benefits (including government-funded health care) are greatly reduced and sometimes even eliminated when a disabled person marries. Tom Fambro writes of his own difficulties with the system: 'I am a 46-year-old black man with cerebral palsy. A number of years ago I met a young lady who was sexually attracted to me (a real miracle).' Fambro learned, however, that he would lose his income support and, most crucially, his medical benefits, if he married. 'People told us that we should just live together... but because both of us were born-again Christians that was unthinkable... The Social Security Administration has the idea that disabled people are not to fall in love, get married, have sex or have a life of our own. Instead, we are to be sexual eunuchs. They are full of shit.'
Institutions - whether traditional hospitals or euphemistically named 'homes', 'schools', or newer community-care facilities - often out-and-out forbid sexual contact for their residents. Or they may outlaw gay and lesbian relationships, while allowing heterosexual ones. Disabled lesbians and gays may also find that their sexual orientation is presumed to occur by default. Restriction of access to sexual information occurs on both a legal and a social plane. The US Library of Congress, a primary source of material for blind and other print-handicapped people, was instructed by Congress in 1985 to no longer make Playboy available in braille or on tape. And relay services, which provide telecommunication between deaf and hearing people have sometimes refused to translate sexually explicit speech. In her poem, 'Seeing', blind poet Mary McGinnis writes of a woman being watched by sighted men while bathing nude:
...the guys sitting at the edge of the pond
looked at her, but she couldn't see them...
and whose skin, hair, shirts and belts
would remain unknown to her
because she couldn't go up to them and
say, now fair is fair, let me touch the places
on your bodies you try to hide,
it's my turn - don't draw back or sit on
your hands, let me count your rings, your
the hairs coming from your nose...
I have quoted poets several times in this piece; many disability-rights activists now see that while we need changes in laws and policies, the formation of culture is a key part of winning our freedom. Disabled writers and artists are shaping work that is often powerful in both its rage and its affirmation. In Cheryl Marie Wade's 'side and belly', she writes:
He is wilty muscle sack and sharp bones fitting my gnarlypaws. I am soft cellulite and green eyes of middle-age memory. We are side and belly trading dreams and fantasies of able-bodied former and not real selves: high-heel booted dancers making love from black rooftops and naked dim doorways.
...Contradictions in the starry night of wars within and being not quite whole together and whole. Together in sighs we say yes broken and fire and yes singing.
Anne Finger teaches English literature at Wayne State University, Detroit, US. In her book Past Due (Women's Press, 1990) she describes her experience of childbirth as a disabled woman.
Alan - hot legs and body love
I'm on a beach in Greece. The temperature is in the 90's but I'm still wearing long pants. Around me are tots of men sporting a range of tasteful and bizarre shorts. You see I've got this leg. This bad leg.
This leg, not me you understand, had polio when I was one year old and it is not normal. If I cover it up perhaps they won't realize for a while, at least until I get up. This leg was my passport to being bullied in school, to being called names like to being both and feared as well as over-protected to shield me from both. Throughout my teens I wanted to join in, to be accepted, to be one of them. Normal... able bodied, The fact that there were people 'worse oft than me', as my mother put it, was of no interest. I was not allowed to be a lover, not even with girls who got close to me. I was the friend they could trust because my sexuality was denied me by both sexes.
From about 16 I would go to discos and dance on my own. This stopped when I saw myself in a mirror. At 17 I found a lover. I was grateful, very grateful and very possessive... after six months she'd had enough. I was devastated and remained celibate for the next seven years. I couldn't face the hurt of being told I was not normal by someone I loved. I was also the only Disabled Man in the World. I guess it's difficult, if you hate yourself or some part of yourself, to expect someone else to love you.
At 24 I had my first long relationship, which ended four years later and since then I have always been in a relationship. All these women were strong and they helped me to open up and relax and to become less possessive. They also introduced me to politics.
For the next 12 years, despite my leg, I grew up. When I was 34 I got a job which gave me the opportunity of working with a group of people with learning disabilities. I resisted this strongly. After all, what did I know about them? After a year of persistence by a non-disabled woman colleague, I relented and began a piece of work that changed my life. After a few months I realized that their issues were the same as mine.
I experienced with them the denial of their sexuality, the control over their lives by parents, professionals and care-givers. I became angry and, without my knowing, forever affiliated to the disability movement. This is where I resolved my own identity crisis. I looked at my legs again and saw two different legs, but both of equal value.
I began the process of reclaiming my body for myself and being proud of who I was. The myths of normality shattered like the glass in the mirror and for the first time, the whole of me was able to express myself and my sexuality as a Disabled Man. At last I was coming from where I was really at and I was comfortable about that.
As a Disabled Man, from a working-class background, I had been denied not only sexual highjinks, but also participation in the racism and explicit sexism which engulfed the men I grew up with. As a victim of injustice, I never saw the point of dishing it out. Despite the scars of bullying, name-calling and being left out, I had been given gifts I never realized.
So back to the beach in Greece and I am now wearing the most disgusting pair of fluorescent shorts. My partner, a Disabled Woman, is coaxing an ice cream away from Jasia, our 15-month-old daughter, and everyone is staring at us. They've been staring all my life. The difference is now it's their problem not mine.
Wearing shorts, for some people, is a trivial thing but for me it's a practical demonstration of my liberation as a Disabled Man. I love my body, it's the only one I've got and we're going to stay together for a tong time.
Alan Holdsworth is a London-based poet, singer and song-writer who, under the name Johnnie Crescendo, tours with the Tragic But Brave Show.