Guest Author - Monica J. Foster
People with physical or intellectual disabilities are often regarded by others without disabilities as non-sexual beings. Sex, in our current culture, is very much associated with youth and physical attractiveness. When it isnít, is often seen as highly inappropriate. If sex and disability are discussed, it is mostly in terms of capacity, technique, and fertility Ė particularly in terms of a manís capacity to perform and his virility. In terms of women, technique and the ability to have children is a main focus.
However, in neither case is there mention of natural sexual feelings. Why are we ignoring other aspects of sexuality, such as touching, affection, and emotions? Young adults with disabilities experiencing changes from puberty to more mature adults with disabilities deserve the opportunity to express their sexual and emotional feelings as well as their identity as men and women.
If we accept that sexual expression is a natural and important part of human life, then perceptions denying sexuality for people with disabilities deny a basic human right of natural expression. The perception of people with disabilities as non-sexual beings presents insurmountable barriers to safe sex education, both for workers who may be influenced by these views, and for people with disabilities themselves in terms of gaining access to information and acceptance as sexual beings.
It was difficult blossoming into womanhood having young boys and men constantly asking me "Can you do it?" when I was just trying to get to know them first and had no idea myself until I was able to approach my family. Luckily, my parents were very supportive and responsible. I was able ask those questions like any other young woman in development and no question went unanswered, but was tempered to the situation and stage of life I was in. Iíve had doctors in my youth patently assume I was unable to experience and enjoy intercourse without examining me or asking me any questions. I was basically dismissed. To them it was not only immoral to be an unmarried young woman interested in sex and my sexuality as a vibrant woman whose legs just didnít happen to work, but it was doubly immoral for anyone to want that from me. The appointed themselves judge and jury of my sexual development.
For paraplegics and quadriplegics, a loss of sexual function does not mean a corresponding loss of sexuality. Sex is about a lot more than ďTab A goes into Slot B,Ē or another other combination, to put it bluntly. Sexual function may be impaired but can, like other functions, be enhanced, although fertility is still in question depending on the individual. After spinal cord injury the spinal centre for sexual function is generally intact, but messages from the brain to the spinal cord are usually disrupted.
Unless some sensation in the area of the sexual organs remains, the typical sensation of orgasm is lost, but phantom orgasm elsewhere in the body may be experienced. I saw in an interview with Christopher Reeve and his wife Dana that, even though he was a quadriplegic, he had a sensitive area on his shoulder that enhanced intimacy with his wife, so they found new ways to adapt to his new bodily functions. And he and his wife recognized they both still had needs the other could fulfill in their marriage. The accident was not the end. It takes creativity and getting to know the body again after an injury or illness.
In my case, as someone who was born with spina bifida, I had to get to know my body from Day One in all of its functions. And, my sexuality was part of that, and still is as a new amputee now. Physical and emotional aspects of sexuality, regardless of a physical loss of function, continue to be just as important for people with disabilities as for people without a disability. Itís not only about touching, but about how you feel and think of yourself. Iíve been supported all my life to have good self esteem as a woman. I keep myself looking healthy and well-kempt as I can, and Iím always aware of how I smell, how neatly Iím put together. Itís all part of my self-image and sexuality to be mindful of how Iím dressed, wearing nice under things, wearing my favorite perfume, etc. Itís more for me than anyone else, but if I feel good about me, others will as well. Everyone with a disability deserves to have that confidence and security in themselves.
In relation to intellectual disability, society frequently takes the view that people with intellectual disabilities have no rights at all to pursue social and sexual relationships. They have often been completely denied sex education, to the detriment of their overall health and safety. Did you know that women with intellectual disabilities are at higher risk for sexual health risks and gynecologically connected cancers because they are only 30 percent likely to have said checkups? Therefore, these women are more likely to contract sexually-transmitted diseases because of lacking education, are more likely to contract breast or ovarian cancer because they didnít know how to perform self exams properly or their sexual health is disregarded completely.
People with intellectual disabilities are sometimes regarded as sexually deviant or as children because they may exhibit socially inappropriate behavior, but if they are taught how their bodies work in terms compatible to their understanding and how to act in public and private, this behavior can often be lessened or avoided altogether. Not every person with an intellectual disability is going to do something inappropriate in public, particularly if taught correct etiquette for public behavior. Just as can happen in the rest of the community, some people with intellectual disabilities grow up in segregated environments, such as institutions, which differ from the typical family or community setting in many ways. This can cause difficulties in social and personal development, and can contribute to the development of socially inappropriate behavior. It can also make it hard for people with intellectual disabilities to appropriately distinguish between public and private behaviors because professionals in the institutional setting may let the subject of sexuality and sexual development go by the wayside for ďmore importantĒ areas of therapy and health.
In addition, opportunities for sexual exploration among people with disabilities, particularly the young, are very limited. There is often a lack of privacy because of the circle of professional caregivers coming in and out of their day and they are much more likely than other young people to receive a negative reaction from an adult if discovered. It takes caring and understanding from the professionals and family to approach these situations delicately so as not to cause embarrassment or confusion. The general reduction in life choices also has an impact on self-esteem which in turn affects sexuality. I am not saying that the sexual education of an individual with disabilities should ever deviate from the familyís values. Quite the contrary, itís very important that a family be able to discuss their values about sex and sexuality with the individual and seek support from disability-focused organizations and other families in support groups about appropriate, safe ways to discuss such things with their child or relative.
It is also important for educators ó particularly those involved in education programs with direct support workers or people with disabilities ó to understand community attitudes towards disability and sexuality, and the impact of these views upon people with disabilities.
Remember, having a disability does not negate our status as people. Weíre whole inside. Weíre able and we want the same things out of life as anyone else even if we do those things in a different way. Support us in exploring and developing as whole vibrant people without embarrassment or shame in safe ways. Weíre your friends, siblings, children, parents, significant others, co-workers, community leaders and more. Support our quest to become fully-actualized human beings deserving love, affection and respect.