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Sex despite disabilities: an oxymoron?
To many people: yes. The mention of 'disabled' people having sex is guaranteed to raise a lot of eyebrows. An individual in a wheelchair is seen as an object of pity, not of desire. Being 'ugly' or overweight doesn't make a person asexual, but having a physical disability does. And the worst part of this is that many people with disabilities believe this myth themselves. To many men, a spinal injury that results in impotence is seen as the end of their sex-lives. My own Multiple Sclerosis has had a similar effect as the affected areas in my case are mainly spinal. But even less dramatic disabilities often cause people to shut themselves off sexually out of feelings of inadequacy, or out of a fear of rejection.
It would be easy to say that the problem is worse for men, as even moderate dysfunction is immediately evident, and sexual potency and functioning can not be simulated, but the truth is that the problem can be just as devastating for men and for women; just in different ways. The problem may not be as obvious in women, but cultural demands to be "perfect" are so overwhelming that any disability just adds to the already impossible task of living up to the unrealistic ideals all media perpetually assault women with.
And men are just as conditioned by those images as women. We try to live up to what we are expected to be (admittedly, much easier), but disabilities do not enter into that picture. Or if they do, the images of men in wheelchairs that are shown, use men in sport-chairs who have the bodies of Olympic athletes and who are casually whizzing around with the greatest of ease. And of course, men are conditioned to desire that unrealistically perfect woman -- who naturally must not have any disabilities.
So, for each gender, disabilities often cause people to either shut themselves off sexually in order to avoid rejection and embarrassment, or we are shut out, out of fear and lack of understanding.
Wake up everybody!
To both those with disabilities, and those without, I've got news: sex is still very possible and very pleasurable. Just in different ways. Speaking personally, all I can say is that I lost my virginity at age 28, after my M.S. was already starting to affect me. I can actually say that my sex life didn't even start until after I was "disabled". Through four relationships over my 22 years of disability, I've had more, and better, sex than some perfectly potent men have after marriage. My last two relationships in particular (the latest led to a wonderful marriage I am happy to say), was/is very active sexually.
Why am I so lucky?
Partially because of very understanding and open-minded ladies, but also because I have discovered other ways of feeling, and giving, pleasure -- and of communicating.
That latter point is crucial.
For men, it is necessary to learn a new way of looking at a relationship. One thing to be un-learned is the myth that it is not masculine to be sensitive or tender -- and I am not talking about the recent fad where men would force themselves to try to be "oh, so sensitive", and would wind up either wimping out entirely, or concentrating so hard on being 'sensitive', that they didn't pay attention to what their partner really wanted. I'm talking about communicating with your partner; talking to her -- to, not at! -- and listening to her.
The next step is to start listening to your body. Women have a bit of an advantage here, because it is not only "okay", but expected of them to be more sensitive, and that extends to a (usually) greater body awareness than what men typically have. What I mean by this is that, with many physical disabilities, erectile dysfunction and/or reduced sensation is common, and in some cases, catheters (external or indwelling) interfere with normal intercourse. Combine that with the social and cultural conditioning that condition men to equate their sexuality with their penis, and any dysfunction is perceived as a total loss of sexuality.
Not (to borrow from current slang)!
The whole body is covered with sensitive receptor cells capable of being pleasured in an infinite variety of ways. Learn to feel with them. Later on, I detail sensitization exercises I've developed, and through them, I hope, it will be possible to learn to understand what I am talking about. But a change of mind-set has to come first. You have to learn to focus on what you have, and are able to do, not on what you've lost and are unable to do. It's also important to face the fact that if you have a partner, her needs and desires did not get shut off because of your disability. But if you have your mutual love, the challenge is simply to find new ways of expressing those feelings.
For women suddenly dealing with a disability, you may find that you have to educate and reassure your partner. Especially if it has been a prolonged relationship. Chances are that he is going to perceive your disabilities as a signal to "protect" you. Culturally, the male is supposed to protect his "frailer" mate, and you are "injured" and thus to be treated differently. But you don't need that. You need to be treated as a woman, just as before. It is also possible that you have fallen into the trap of letting yourself be sheltered and protected, and that you use that as an excuse not to face your sexuality because you feel less than desirable due to your disabilities./
Both perceptions are faulty.
I would like to suggest a pair of exercises, one for each gender, to try with your partner. For men, this can be an augmentation of, or interim step to, the various solutions I discussed in the chapter on incontinence and impotence. But with or without Viagra, injections, or an implant, this is a sensitizing exercise I highly recommend, and which I think will enhance any relationship -- including ones where neither partner has any disabilities! For women, it is a way of trying to get past some of the fears and insecurities that come with disabilities. It is vital to get back in touch with the fact that you are a woman, with desires and needs that deserve to be just as fulfilled as anyone else's.
For Men
Unfortunately, this works more for paraplegic and high-functioning quadriplegics with a degree of upper body control and sensation. I have to explore, through interviewing, some options for quads with lesser functioning.
But for the former, select a time where you have nothing to interrupt or stop you, and take the phone off the hook. Take a shower together to get good and scrubbed and clean together. Enjoy that! Get naughty if the mood strikes. Make a game out of it and relax. Dry off briskly to get the blood circulation to your skin going good. Next, if you have incontinence problems, catheterize or empty your bladder as much as possible with the Credét maneuver I described in the incontinence chapter. Put on a fresh catheter, and instead of a leg-bag, get out a bedside bag or container with a longer hose that you can drape over the edge of the bed to bag or container. This exercise will take time, so remove any worries.
Now, make sure your bedroom is suitably warm, and get on the bed with your partner, after turning the lights down low. Get comfortable. Depending on your disability, this will vary. If you have less mobility, you may want to lie down next to your your partner, with her on her stomach or facing away from you at first. If you can balance sufficiently to sit up next to her, have her lie on her stomach next to you. The idea is to take it slow and easy.
Begin with a gentle massage, using a little massage oil if you like. Run your hands over her back and explore it, concentrating on the feeling in your hands. If parasthesias reduce your sensation, try using your wrists and the back of your hands if you have more sensation there. Feel the softness of her skin, the warmth. Find the muscles underneath the skin and knead them lightly, lengthwise, slowly. Relax her, and yourself. Close your eyes from time to time and concentrate on what you feel with your hands. If you're able, work your way up and down her body. Don't be shy about kissing her, using your tongue or nibbling lightly. Relax, have fun 'discovering' her. Have her shift and move around you if necessary.
And talk to her!
What does she want? What gives her pleasure? The answers will be more complex than you might expect. Woman are not as fully wrapped up in "orgasm" as the end-all, be-all of sex as many men think. Neither yours nor hers. You will probably also find that what you are doing is one of the things she enjoys. Build on that. Find the little erogenous zones that may surprise you. Not all pleasure is centered where you might think. And concentrate on your feelings for her and savor your closeness!
Turn her over and continue your exploration. Let her take your hands and guide you if she wants. Rest your head on her chest, feel and hear her heart-beat. Listen to that. Caress and cradle. Use your cheeks, your mouth and face to feel her, and learn her contours. Time doesn't exist. Only the two of you. Close your eyes for a while and focus on the physical sensations and sounds. Listen to the pattern of her breathing as you explore her and feel her movements. And don't be shy about oral sex and bringing her to orgasm. That does not mean that sex is over! Again, savor each sensation. Tactile, aural, olfactory and taste. As you move with her, you'll find what brings her pleasure, beyond what she told you. You may both find surprising responses that neither of you expected.
The next step is to find out what gives you pleasure, despite any disabilities. Unless you're dead, you will have found a lot of that already. Which was the point of beginning with her. You need to forget about "what was". This is "what is". Many men never explore a woman the way you have just done, and don't know the pleasure to be found in it. Sublimate a bit. If you truly care for your partner and get into what you are doing, her pleasure will be yours. Each of you gives to the other to receive.
Now it is your turn to be explored. Let her work her way over you. Forget about the myth that the penis is the only erogenous zone a man has. Concentrate on the feel of her hands and mouth on your body as she explores you. Hold her in your arms and have her lie on top of you. Embrace her. Feel the length of her on you as you kiss her. Your skin has receptor cells all over -- concentrate on what they are telling you! That was another reason for getting good and clean, and scrubbing dry. It will have washed away and abraded dead skin cells to expose a fresh and more sensitive epidermal layer. The increased circulation from the toweling will also have increased sensitivity.
And as I said, be sure to let your feelings for each other be part of your mutual exploration. This is not just a physical act you are engaging in. Sex can never be as fulfilling as making love. And making love is not merely a matter of 'penis into vagina until, hopefully mutual, orgasm'.
Which brings up a point. Just how severe is your impotence?
In my case, it is enough of a problem that I do not have sufficient rigidity for penetration, and orgasm during intercourse has not been possible for a long time. Even masturbation was a 20/80 proposition (on the negative end) fairly early and usually took so much effort that it fell under the heading of arm exercising rather than pleasurable activity. And now it doesn't work at all. But if your problem is similar to mine earlier on, work with it. After the initial mutual exploration, empty the bladder again, get a soapy wash-cloth and a towel, remove the catheter and clean up thoroughly -- and don't get clinical. Have fun. Then work together to masturbate. Take turns and use some lubricating jelly or lotion to keep from getting sore, if you have to. And as you masturbate, touch each other in other ways to pleasure yourselves. Involve your partner! If it works and you feel yourself approaching release, have her be the one to bring you to climax, either orally or manually. Let her be the source of your pleasure. For both of you, it will add to the sensation, and she needs to know that she is responsible for your pleasure. It may take some experimenting to get the timing right, and it may not work, but if it does, trust me: it's wonderful! And if it doesn't work, don't feel as if you have failed! Focus on the pleasure you have already given each other, and don't worry about one small part of it that didn't work out. The important thing is to learn new ways of appreciating love-making, and to let your partner know that she is important to you, that you still desire her, and that she still gives you pleasure.
For Women:
The same caveat about functional level applies here, but for women with more sensation, try this. There are many similarities to the previous exercise, but it is different in some important ways.
Select a time where you have nothing to interrupt or stop you, and take the phone off the hook. Make sure to plan this out ahead of time so that your partner knows that this is going to be a prolonged and relaxed exercise. Begin by taking a shower together to get good and clean together. Enjoy that! Get naughty if the mood strikes. Make a game out of it and relax. Dry off briskly to get your circulation going good. Next, if you have incontinence problems, catheterize or empty your bladder as much as possible with the Credét maneuver I discussed in the incontinence chapter. Normally, it is advisable to drink a fair amount of fluid before sex, to help reduce infection risk, but in this case, as this exercise will take some time, you may want to reduce your fluid intake for some hours prior, for additional security. If you have painful bladder problems, you may want to take a mild analgesic for the pain, and if your doctor directs, an antibiotic. You want to remove as many distractions, worries and discomforts as possible so you can focus on pleasure.
Now, make sure your bedroom is suitably warm, and get on the bed with your partner, after turning the lights down low. Get comfortable. Depending on your disability, this will vary. If you have less use of your arms, you may want to lie down next to your partner, with him on his stomach or facing away from you at first. If you're a para and can balance sufficiently to sit up next to him, have him lie on his stomach next to you. The idea is to take it slow and easy.
It may seem strange to start with him like this, but there is a reason, so ask him to relax and enjoy it. Begin with a gentle massage, using a little massage oil if you like. Run your hands over his back, explore it, concentrate on the feeling in your hands. If parasthesias reduce your sensation, try using your wrists and the back of your hands if you have more sensation there. Feel the texture of his skin, the warmth. Feel the muscles underneath the skin and knead them lightly, lengthwise, slowly. Relax him, and yourself. Close your eyes from time to time and concentrate on what you feel with your hands. If you're able, work your way up and down his body. Don't be shy about kissing him, using your tongue or nibbling lightly. Relax, have fun 'discovering' him. Have him shift and move around you if necessary.
And as you work him over, talk to him!
He will be more relaxed and open at this time than he might otherwise be. Take advantage of that and explore his true feelings about your disability. He may be having a hard time in coming to grips with them and may simply not know what to do, or how to act. He may be feeling overly protective about you. Your "disabilities" probably make you seem frail and vulnerable in his eyes. He may have been uncertain of how to approach you sexually for fear of "hurting" you. And if you are unable to achieve orgasm because of spinal injuries or a neurological condition, he may feel frustrated by the misperception that he can not give you pleasure. Perhaps you may have contributed if you don't lubricate normally and intercourse has been painful, causing you to avoid sex. If so, explain that and reassure him. If this has been a problem, have some sterile, water soluble lubricant like KY Jelly on hand for later to help ease this problem. Let him know that it is not that you don't desire him, but that you need to find new ways of enjoying sex.
Also let him know about your own feelings and fears. Tell him what it is you want and feel, as you work your way over his body to explore it. You'll be getting to that in a while, so lay the groundwork Use that time to communicate verbally, and non-vervally. Make sure also to tell him to really relax and 'feel' everything you are doing to him.
Have him turn over, and continue your exploration. Rest your head on his chest, feel and hear his heart-beat. Let him hold you. Caress and cradle. Use your cheeks, your mouth and face to feel him. Time doesn't exist. Only the two of you. Close your eyes and concentrate on sensations and sounds. Listen to the pattern of his breathing as you explore him, feel his movements. And don't be shy about oral sex and bringing him to orgasm unless he feels insecure about being able to climax twice. You don't want him to suffer "performance anxiety" which will keep him from focusing on what you are doing. But if he does have aan orgasm, it does not mean that sex is over! You have time. Again, savor each sensation. Tactile, aural, olfactory and taste. As you move with him, give him a chance to learn new ways of feeling pleasure.
The next step is to focus on what gives you pleasure. By this time, he will understand how much pleasure can be felt, even without intercourse. Which was the point of beginning with him. He needed to understand that his pleasure need not be focused just on his penis, and he will have an easier time appreciating how much more you can feel, beyond your own orgasm. You both need to forget about "what was". This is "what is". Many couples never explore each other the way you are doing, and don't know the pleasure to be found in it.
Let him work his way over you now, the way you explored him. Guide him if necessary. Let him know when he hits an erogenous zone he didn't know about -- or that you weren't aware of. Concentrate on the feel of his hands and mouth on you as he explores you. Feel the length of his body as he holds you. Your skin has receptor cells all over -- concentrate on what they are telling you! That was another reason for getting good and clean. It will have washed away dead skin cells and exposed a fresh and more sensitive epidermal layer. Learn about your own body. You both need to learn how to help you maximize your own pleasure if orgasm is difficult to attain. But don't believe that spinal injuries or neurological impairments make orgasm impossible. It may feel a little different, and may not be as intense, but many spinal injury and neurological deficit individuals report pleasurable semi-orgasmic feelings. Work together to try to elicit those -- and maybe you will even achieve an actual orgasm.
If you are both ready for intercourse, work together to find a comfortable position and angle of penetration. Relax and concentrate on the full experience, and your feelings for each other. The psychogenic component of sex is a powerful one. You have to let your feelings for each other be part of your mutual exploration. This is not just a physical act you are engaging in. Sex can never be as fulfilling as making love.
And if you never get to the point of intercourse or orgasm -- so what? Making love is not merely a matter of 'penis into vagina until, hopefully mutual, orgasm'. What you just did, was to make love. There is always next time if you want to vary the routine. Now that you have started learning, it's easy to go on.
If both partners have disabillities
This gets tricky, and is dependent a lot on the degree of disabilities. My advice would be to contact rehab centers and talk to their clients to find people in such relationships - and get some straight advice. This is something I would advise anyway. (NOTE: My wife and I both have M.S. related impairments [her's less than mine] and we have just found our own ways mixing the above techniques .
A Final Note:
The point of this whole exercise is to teach you and your partner to be more aware of each other. For the person with disabilities, it is crucial to redefine 'pleasure' and to extend the definition of it. For the partner, it is important to know that they are desired and loved -- and that they can still bring their 'disabled' partner pleasure, and they need to learn how to go about continuing a healthy sexual relationship.
This is a time-consuming exercise, and perhaps all your love-making can't be as prolonged or involved, but why not try to take the time once in a while? One thing that disturbs me to no end, is that we have all become increasingly conditioned to become what I call a "microwave society". If it can't be done palatably in three or four minutes with the simple push of a button, then many don't have the time or patience for it. But relationships are not frozen dinners, even if some have all the warmth of a Budget Gourmet. If couples would take a little time to 'make love', not just have obligatory and mechanical sex, it would probably do a lot to enhance all facets of their relationship. Make a 'date' with your partner and set aside some time for it. It's a wonderful relaxer, and these days we all need some 'time out'.
Take the time to feel, to listen, and to learn.
Post-script: I want to mention a book worth reading: Enabling Romance, by Ken Kroll and Erica Levy Klein (Harmony Books: New York, 1992). It is an outstanding book that gives an inspiring sample of personal tales of individuals with disabilities living and loving in the many ways they are able to. It is must reading for anyone doubting their sexual future. Also be sure to check out SexualHealth.com, a wonderful web site with loads of resources.
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