Having a partner who is or becomes disabled

Obviously, disabled people can make wonderful partners. In fact, it is quite common, when a person whose disabled partner dies, for them to seek out another disabled partner. As in any relationship, there can be problems and these can be solved with good communication, openness and love.

Image by David Steinberg, www.davidsteinberg.us 

Many British people, especially those who went to single-sex religious schools where sex was never discussed at home, find if very difficult to communicate about sex and their emotions, and such people might find it harder to accept disabilities and the intimate challenges they present. People who are brought up in cultures that consider that a disabled child brings shame to the family or that a disabled person must have been very bad in a past life will also have problems. Chances are, non of these people will be reading this article, but it is good for the rest of us to be aware of the reasons why some people are so stuck and limited in their outlook.

I shall be discussing three rather difference scenarios: starting a relationship with a disabled person; being in a relationship when your partner becomes disabled; and thirdly, enjoying a sexual relationship in which both of you are disabled. The latter is expanded on this website in a separate article.

Starting a relationship with a disabled person

You are falling for a disabled person but probably feel nervous. You may not know about their sexual potential, how much they will welcome you, whether it will be hard work pushing, helping and caring, and whether you can cope with the stigma you may inherit. Don’t be put off – disabled people can be great lovers. You will be entering a world of the special, not lesser, people whose values can be even deeper and more meaningful than many others.

Many people say that it’s often easier when the disability is obvious than when it is hidden. This has been described as “you can see what you are getting”. Many disabled people are nervous of starting a relationship, but this fear is a far greater when they have yet to reveal that they use a catheter, have an ostomy or have severe depression, mental illness or a phobia.

Some people complain that however much they want to start a relationship with a disabled person, the disabled person seems to mess it up. This is often due to fear and even self-loathing. Until the disabled person has accepted their disability, they cannot easily start a relationship. They expect rejection because they are rejecting themselves. This situation commonly occurs online, when the sex and friendship has developed before they have ever met. The problem is compounded by the fact that people often lie online. Most of our Outsiders members say that online dating is unsuitable for disabled people, that it is bedeviled by endless disappointments, although of course, there are some exceptions.

It’s very important that the disabled person trusts you sufficiently to be completely honest and safe to guide you through the ins and outs of their impairments and daily routines. It is especially important for them to be honest about fatigue and their limits.

All relationships have to have a balance, be it a power balance, sharing tasks and responsibilities, or giving each other space, respect, love and sexual pleasure. The chances are that the balance between you and your disabled partner might be quite different from many other couples’, and that is fine. It may change over time, being re-negotiated. If your partner has a progressive disability, continual negotiation is essential.

Most people find it very difficult to be a lover and a carer at the same time. Obviously, it’s not very romantic doing the chores for someone and wiping their bottom, so it is important to set separate time aside for sex and fun. However difficult it is having a PA coming into the home, this may well be preferable to you doing all the work.

If your partner does have a team of PAs working for them, you may wish to have some input into the contract that they draw up. The PAs may witness your intimacy, and your disagreements, and boundaries need to be happily agreed in advance. There may be moral conflicts if you have very different religious beliefs, and there is nothing worse than a disapproving PA. It’s really important that they don’t cramp your style.

Probably more than with non-disabled partners, having a supportive network of friends is essential, including disabled friends.

Being in a relationship and your partner becomes disabled

When one of you becomes disabled, it will automatically change the balance in your relationship and some people look upon that as an interesting challenge, whereas others feel defeated.

Both of these can change with time, but it’s really a good idea to find out as much as possible, to communicate and accept advice and support. If this support omits sexual issues, demand that sex be put on the agenda.

A sudden change, such as a broken back through accident or an illness causing loss of sight, might be easier to adapt to than the slow or evolving process which takes place with MS, for example. Sometimes disabilities such as ME, where there is little support from the medical and health professions, make it even more of a challenge.

Adapting and accepting might seem easy in theory, but in practice a couple may struggle and one of the most important methods of coping is through peer-to-peer support – talking to other disabled people and couples who have been through the same process and carry on enjoying pleasures together, including sex.

Sometimes disabled men complain that their wives stop fancying them, because they no longer look like the dashing hero they married. Most women have a caring instinct but it’s important for them not to slip into the role of carer and out of the role of lover. Set aside evenings or times you are not tired, to be dashing and sexy.

Sometimes disabled women complain that their husband stops having sex for fear of hurting them, and they don’t know how to convince him otherwise. Others complain that their husbands no longer fancy them.

Some people say that they would do anything to bring the sex back into their relationship but their partners won’t discuss it and refuse to go to a sex therapist. This is sad, as communication is the key to success and sex therapy is actually fun and easy and quickly helps couples enjoy sex again. Call the Sex and Disability Helpline for advice.

I once got a call on the Sex and Disability Helpline from a man with Parkinson’s Disease, whose medication made him extra horny, but his wife wouldn’t let him, his arms were too weak to masturbate and he couldn’t afford a sex worker. Saddest call I have ever had. I tried to help by suggesting a change of drugs and that he purchase a vibrator to help him reach orgasm, but he kept calling with the same problem and I realised that his memory was fading, on top of everything else! Perhaps the best advice would have been to suggest some medication to reduce his libido, to take him out of his sexual purgatory.

It is not possible to predict what will happen in any relationship; many fail without disability entering the equation. Try not to let feelings of guilt and rejection swamp you if your relationship fails. Don’t live a life of anger or blame. Obviously you will be upset if you part, but hope to move on when you are ready.

Couples who stay happy together can make the most out of every situation that presents itself. You may have more time to enjoy each other, disability can bring you closer and to be more intimate.

Some couples who have accepted the changes still crave a little of what was before. For example, they enjoy sex without erections but once in a while want a stiffy. They may hire an escort or reply to a personal ad and enjoy a threesome. Other couples find ways of bringing the disability into their BDSM fantasy enactments.

With communication and courage, plus a solid relationship based on love, the onset of disability can become a catalyst for change and growth, so that you share a common purpose, struggle together to overcome the hurdles, with humour, and still enjoy the beauty of being with one another, giving each other lovely sensations and watching each other getting off.

When both of you are disabled

There are many happy relationships where both parties have disabilities and sex is enjoyed. Part of the bond is that both experience the stigma, understand each other, and accept each other.

Sex can be great because you are used to asking for what you want and find ingenious ways around difficulties. Finding warmth, discovering you are desirable, and having access to another body to play with are enormously thrilling.

There are usually more difficulties out of bed than under the covers. You may have different energy levels so that one of you wants to go out socialising more than the other. Going out can be expensive if you need two taxis rather than one. One man said that when he took another wheelchair user out he felt like a packhorse. If you are both blind, neither of you can read the signs and you can’t storm off in a rage.

Severely disabled couples may find it impossible to have sex without assistance. You may need to be placed into position by your PA. The regulations in most residences and care work agencies is that two disabled people can be put into position, but they cannot be helped any more than that – for example placing the penis inside the vagina, anus or mouth. This seems pretty mean. If you need such help, you may decide to hire a professional sex worker. He or she could do anything required to help you along, and ensure they are not left hanging in frustration. This might be very important for two disabled people when the woman has cerebral palsy who finds it difficult to open her legs and goes into spasm when the penis tries to enter her vagina. The sex worker can help her relax and guide the penis inside.

Disabled sex has lots of potential

There is no reason why disabled people cannot enjoy a hot and passionate relationship. It’s important to keep the channels of erotic communication open. Erica Jong once declared that sex with her current husband stayed fresh and hot because he listened to her tell him about one of her fantasies every day.

Happily for those of you who are interested, erotic clubs such as swinging and fetish are usually welcoming to disabled people, and accepting. Nowhere is this more true that at my charity event, the Night of the Senses. We hold it annually in London, welcoming people of all sexualities, sexual tastes and all disabilities.

Dr Tuppy Owens

Outsiders and Sex and the Disability Helpline

Outsiders the website features leaflets, our book Practical Suggestions, copies of our magazine INSIDE which updates Practical Suggestions and resources. Our club is a self help group for physically and socially disabled people to find partners. www.outsiders.org.uk. Our group the Sexual Health and Disability Alliance campaigns for the sexual rights of disabled people, formulates policies and runs a conference.

Sex and Disability Helpline 0707 499 3527 11am – 7pm weekdays. Sexdis@outsiders.org.uk

Night of the Senses www.nightofthesenses.com tups@nightofthesenses.com

TLC for disabled men and women to find responsible sex workers, therapists and teachers www.tlc-trust.org.uk

Playing with Disabilities book about BDSM by Angela Stassinopoulos.

The Nazza Plains Corporation, 4640 Paradise Road, Suite 141, Las Vegas, NV 89109-8000. ISBN 978-1-934625-48-4

Posted in Sex, Sex And Disability