The attitudes and values of family, society, carers impact enormously on the sexuality of people with disabilities. People who are intellectually, psychologically or physically disabled are viewed either as sexless creatures or people whose sexuality is out of control. In reality the main problems are a lack of privacy for people to engage in consensual sexual activity, a lack of information about how their condition impacts on their sexuality and access to suitable resources for people.
Many carers of people with an intellectual disability cite their inappropriate sexual behaviour as troubling, most commonly public masturbation. The behaviour is looked at in isolation and attempts are made to modify it. More valuable is to look at what needs are being met by that behaviour and to help people develop a more appropriate way to deal with those needs. Often people caring for the disabled wait for a sexual issue to come up before discussing sex, rather than initiating discussion first. There is still often hesitancy in showing sexual videos and providing sexual material to people with disabilities. Teaching in this area is best if it is pro-active, rather than waiting to deal with behaviours which have become problematic for other people. When medical histories are taken and the physical condition of people with disabilities is charted this needs to include their sexual history as well.
Sex education for the disabled should cover the three dimensions of sexuality: reproduction, socio-emotional and physiological. The most important dimension is the socio-emotional one, with the most crucial aspects of that being self-esteem and attitudes and values. If these are positive and solid then if anything untoward happens in other areas of your life then you are able to deal with them.
Matthew was an intellectually disabled 16-year-old boy, whose carer was concerned about his inappropriate public sexual behaviour, particularly his habit of rubbing his genitals up against fences, doorways and posts. They wanted to know how to stop this behaviour. A sexual counsellor spoke to the carer extensively about Matthew’s relationship with his body and they said that he had a reluctance to touch his penis at any time, even when urinating. This habit had developed quite young after he had been caught masturbating, had been physically punished and told “Don’t touch that, it is bad”. He had formed a belief that he should not touch his genitals, but at 16-years- old, with hormones racing through his body he needed some sort of touching and physical relief. The counsellor worked with Matthew and his carer to unlearn all his negative early messages about his genitals and replacing them with positive ones. However, this is often difficult to do.
In her late 30s Jenna had a physical accident which left her with no feeling from her waist down. She had been happily married for 12 years and was concerned about how this injury would affect her sexual relationship with her husband. It was important to her that their sexual relationship continue. She learnt to concentrate not on what she had lost, but what she could use to replace it, and to enjoy the sensations she still had. After much experimentation she realised she could still feel every physiological sensation of orgasm but now this was located at the back of her neck. She had orgasms this way and these were very satisfying.
Interview: Tuppy Owens
U.K. sex writer, educator and counsellor, specialising in working with people with disabilities. She is the organiser of the notorious Sex Maniac’s Ball, which raises money for services for people with disabilities.
“The most difficult issues for people with disabilities is in getting in touch with their sexuality. Most people with disabilities have negative images about themselves and often think that their body has such defects that nobody will ever desire them, or that they are hideous or sexually inadequate. Some lucky disabled people manage to reject these views. If you have a lively erotic imagination and can find ways of pleasuring yourself, this will help to overcome the negativity. This pleasure can easily be shared with another and bring mutual delights and joy.
“If your disability is very obvious to people who meet you, you have to develop your own approach to socialising and finding sex partners. Even if people are initially put off by your appearance, many people have experienced bad relationships and seek deeper, more meaningful ones. If they look beneath the external surface they might discover that people with disabilities still have true erotic potential. They might not want to marry you because of what their parents and peers will think, but they may find you an exotic sexual adventure. Then you have the chance that love will keep you together, privately, if not publicly!
“Practicalities may make it difficult for some disabled people to be in touch with their sexuality: short or inactive arms may make genital masturbation impossible. Visual impairment may confuse erotic imagery, hearing impairment may isolate people so that they do not know there are places to go to enjoy voyeuristic or exhibitionist experiences where speech is unnecessary. A general lack of communication may frustrate a disabled person who is gay and does not know there are gay or lesbian communities they can be part of.
“My tips include throwing caution to the wind and stating your sexual desires. You will often be surprised that people will be pleased to know you want to find lovers, and that you are prepared to take such risks. The bigger the risks you take, especially if it is with a sense of humour, the more likely you are to find sex. It is important to remember that everyone gets rejected and the loss is as much for the person who rejects you as it is for yourself. If you view the mating game more as a game than an emotional drama, you will do better. Having some friends to laugh with over rejections, helps enormously. Accept yourself. Pleasure yourself. There is nothing as off-putting as a panting, frustrated, strange-looking person chasing you. Never be that person. Be cool and skilled.”