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Four Steps On The Road To Invalidity: The Denial Of Sexuality, Anger, Vulnerability And Potentiality

From: Australian Disability Review
Creator: Irving Kenneth Zola (author)
Date: 1988
Publication: Australian Disability Review
Source: Available at selected libraries

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A number of years ago I lived in a place in the Netherlands called Het Dorp (Zola 1982). This was a village specifically created for people with severe physical disabilities and chronic diseases. When I lived there almost every villager agreed that the six aims of the founders: to guarantee every inhabitant the right to privacy; work; recreation; religion; culture; and self-governance were, if not solved, at least being worked on seriously. Yet these 'six building blocks of happiness' were just that, building-blocks, a foundation which awaited an edifice. Ironically, the satisfaction of these basic needs did not so much make us thankful for what we had been given but provided us the time and opportunity to be aware of what we had lost; emotional needs that seemed to have been taken away, or never granted. As a result, those of us with a disability necessarily spend much of our time in a continuing effort to reclaim what we have lost: the right to act sexy, get angry, be vulnerable, and have possibilities. These basic needs do not seem like the kind of things that one person can give to another, but they are needs whose satisfaction the rest of society has helped impede and deny. It is the fact as well as the implications of this I wish to illuminate in this talk.

On Being Sexy

I probably need to say the least about sexuality. Sexuality is one of the first things 'to go' when one becomes ill, and its return, often framed in standard jokes, supposedly indicates recovery. Much is made of sickness being a period of social withdrawal, when one feels less attractive and less interested in sex. And when one becomes permanently disabled, the attractiveness, the ability and the interest to engage in sex are often regarded as similarly impaired.


More and more I realise that this is true only as long as sex is associated exclusively with youth and physical attractiveness. Our society does not like to picture people who are weak, sick, and even dying, having needs for sexual intimacy. It is regarded as unseemly. Such people are thought to have better things to do with their time than holding or being held. Yet my personal experience and professional observation has taught me to distrust this notion. The desire I believe is always there but it is shunted aside, suppressed by fear. We do not express or even show our wishes because we have learned that in our condition of disablement or disfigurement no one could (or should) find us sexually attractive.


I need to take a brief aside here about what 'should' be. Several years ago I was consulting with a sexuality and disability counselling program, and the staff were discussing a project of sexual experimentation in Sweden. It involved able-bodied counsellors being sexually involved with people with severe disabilities. It was ultimately discontinued; not because of the experimentation, nor because of any lack of success but because it was found that many of the counsellors were enjoying themselves. They actually began to find these very physically disabled people attractive and that was regarded as shocking if not sick.


To return to my original point those with a physical disability withdraw or deny the need for intimate contact not through lack of desire but fear of rejection. A self-fulfilling prophecy has thus been created.


Still another dilemma in dealing with sexuality amongst the disabled is a certain male and culture-boundedness in thinking. Thus it seems that the existence of sexuality is either denied entirely or if recognised is located entirely in the genitals: and the male genitals at that. What society in general and the rehabilitation literature in particular seem to have focused on is sex as capacity and technique. Thus if the researchers are not counting the marriage and divorce rates, or the number of children, they are measuring the number, frequency and type of orgasm. And where those with a chronic disability are concerned the research and clinical efforts are on compensatory techniques, ways to stimulate or simulate ejaculations and erections, ways to reclaim some lost or weakened ability. And while I agree that sex involves many skills, it seems to be foolish and limited to focus on one organ, one ability, one sensation to the neglect and exclusion of all others. Sex and loving can surely involve the genitals and what is euphemistically called penetration. But we can also touch, show, and experience love in our fingers, hands, feet, tongues, lips, eyes and ears and words.


The loss of bodily sensation and function associated with many disorders, and its replacement with a physical as well as psychological numbness has made sexuality a natural place to begin the process of reclaiming some of one's self-hood. But as the self is located in no single place, neither is sexuality.

On Getting Angry

The dilemma of anger for those with a disability was summed up best by a friend of mine. For months, she had what she called 'weak spells' and then she learned that the condition would be permanent, that she had indeed a debilitating progressive disorder. While there were many things about this that bothered her, one in particular stuck in her throat: 'Now that I've got this problem I just can't afford to be angry with anyone. I need them too much'. And so began with her, and with many others, a lengthy process of learning to be nice in the face of one after another upsetting events.

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