Sexuality and people with disabilities: What experts often are not aware of
For most people sexuality is a very intimate area of their personal life which they do not wish to share with other people with the exception, perhaps, of a few very close persons. On the other hand, other peoples' sex life is of great interest to a large part of the population as evidenced by the huge market for sex-oriented films, magazines and similar products. Often, this interest in other peoples' sex life has to do with one's own deep personal problems in this area. I do not want to oversimplify the issue but I have the impression that experts on disabled peoples' sexuality who are mainly concerned with topics such as erective and ejaculatory capability, positions or sexual technical aids may have little knowledge of our every-day lives. How else can one explain why they overlook the most blatant obstacles that prevent many of us disabled people from fully enjoying our sexuality? In this short comment I would like to draw attention to a few obvious but nevertheless often forgotten difficulties that many of us face who have more extensive disabilities.
Sexuality is a form of communication, of expressing one's own personality to another person. The way I present myself will largely depend on how I see myself. How can I feel attractive, how can I love somebody, if I do not love myself! Society constantly bombards us with outright and indirect messages that our lives are worthless, that we are helpless, hopeless cripples. Often I have received the dubious compliment: "You must be strong, because in your place I would have killed myself long ago." The most important task we face is to build up our own value system independent of our surroundings. Only then can we reach the point where we appreciate our personal resources and our uniqueness as human beings. To reach this position is nearly impossible, if each of us had to do it by himself or herself. In this task we need the support of other disabled persons. By sharing our experiences and insights we understand that we are not alone. By learning to appreciate each other as the capable, interesting and caring people we are we can immunize ourselves against negative attitudes.
Let's face it, society does not think of us first and foremost as sexual beings. Most of us are considered objects of care, somebody one has to be nice to. Disabled people are often seen as sick. Sick persons are not expected to have a regular life with social responsibilities such as work. Sick people are definitely not expected to start a family. In many countries disabled people are begging in the street. Elsewhere well-intentioned politicians try to mobilize taxpayers' money for disability programs by depicting us as the weakest members of society. In both instances our unproductive image does not help our self-esteem, it does not contribute to our sex appeal. Who wants to fall in love with a sick person, who would want to spend the honeymoon with a beggar?
Disabled people often receive inferior schooling, if any, and face enormous problems in getting employment. No wonder that so many of us have poor self-confidence. Without self-confidence it will be difficult to see oneself as an attractive sexual being.
Those of us who need assistance in their daily lives with such tasks as getting dressed, washed, going to the toilet, etc. are exposed most to the paternalistic and protective attitudes of our surroundings. Our physical dependence on others is automatically equated with intellectual and emotional dependence. If we ourselves feel dependent and if other people believe that too, it will be difficult to be sexy in your own and somebody else's eyes. A person who feels inferior will not be able to establish a sound relationship with another person that is based on equality.
In countries without personal assistance services many of us have to spend their lives with their parents. How can one develop a mature sexuality, if one has to live in forced dependency and childhood?
Those who do not have any relatives who can assist them often are locked up in institutions where they share their room with several other persons, where the inmates are separated into a male wing and a female wing, where they cannot come and go as they please, where they have to eat and defecate according to specific schedules. I myself spent 5 years of my youth in one of these institutions; it felt like prison. Who can develop a gratifying sexuality in a prison?
For many disabled people who need personal assistance the only liberation from the institution or the parental home is marriage with a non-disabled partner. Without tax-funded personal assistance services partnership and marriage - not to speak of childrearing - under these circumstances involve an enormous amount of responsibility on the part of the non-disabled partner. Often this means forgoing a career and a life of one's own. Providing the practical assistance is then seen as a sign of love. When the non-disabled partner becomes overpowered by the tremendous mutual dependence and the sheer amount of work, guilt feelings will result on both parts. Some relationships are kept together by guilt feelings which are often mistaken for love. I am a personal assistance user myself married to a non-disabled woman. I am in the privileged position that the government provides me with money to employ my personal assistants. I am not dependent on my wife in that respect. Those times when I am negligent in arranging personal assistants for myself and have to ask my wife to help me, I feel and function differently. Dependency does influence a relationship negatively.
Sexuality is the result of the whole person's life situation. Without the prerequisites for self-esteem and personal independence there can be no sound sexuality. What I hope to have shown in this brief comment is that for many of us who have extensive disabilities our sexual liberation does not so much depend on sex counselling or mechanical sex aids but on the availability of tax-funded personal assistance services which empower us to take control over our own lives.
Adolf D. Ratzka, Ph.D
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