Service User Voice: Sexual desire is universal

Recently, I heard of a physically disabled man who was dying in hospital. A relative had been looking through his house, and discovered his collection of pornographic videos. She was so upset that she called him “dirty” and “disgusting” in the middle of the ward, where everyone else could hear.

In all of the discussions about disabled people there are thousands of words about increasing people’s opportunities to be self-directed, to have more control over their care, with direct payments and individual budgets, recognition that people need education, employment, access to transport and the risks of social isolation.

There is one subject which is always pushed into the background: sex.

On the whole, the only time that sex and disabled people are officially mentioned together is when there is a suspicion of abuse: it’s as if everyone assumes we are asexual, and that the only time that we experience sex is as a victim in an abusive relationship.

Women in the caring professions have always been aware that some of their (male) clients might try to meet their sexual desires through their carers. They tell each other, informally, that someone has “wandering hands trouble”, or talk about “inappropriate remarks”. It’s usually left to the individual carer to deal with this sexual harassment in their own way. The original problem, that the man in question is trying to meet his sexual desires inappropriately, is usually brushed under the carpet.

Even when disabled people aren’t behaving badly, you are embarrassed to put people’s sexuality and their desires on the agenda, even though other aspects of their lives can be described in the tiniest detail – their personal finances, or the most intimate details of their personal care. Have you ever looked in someone’s case notes and found any mention about their sex life – or lack of it?

Many of us are semi-detached from mainstream life in many ways, and sexuality is no exception. We are often not as pretty as “normal” people some of us behave oddly, or look as if we couldn’t take responsibility for sexual relationships. Expressing one’s sexuality may not be a human right, but having sexual feelings is an almost universal human experience. If you are meant to be helping someone live in the community, and you ignore this part of their lives, you’re doing them a grave disservice.

Simon Heng is disabled and involved in service user organisations

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