Intimacy, Sex, and Babies

Whatever your situation—newly injured or living with a disability all your life, young or mature, single or in a committed relationship—sexuality is a part of your nature. You can find a way to express your sexuality in a way that is satisfying and meaningful for you and your partner.

Adjusting to a new disability has its difficulties. Some loss of sexual function occurs with many injuries and disabling conditions. However, this is a matter of adaptation. You are fully deserving of love and sensuality. Understanding the physiological impact of your disability is crucial to knowing your limits and therefore your possibilities. Unrealistic expectations are far more destructive to your love sensual life than the actual physical limits.

Advances have been made that allow paralyzed men to participate in intercourse and fatherhood. Women’s experience of sex—a topic largely taboo in the rehabilitation community until recently—is getting more attention, in addition to the question of having babies.

This chapter looks first at the pressures that culture and our own expectations place on a narrow range of sexual activity. We then look at options for intimacy and finding partners. Next we turn to sexual activity itself: talking it over, concerns about revealing your body, orgasm and other sexual responses, changing expectations and style, bowel and bladder issues, male erection, etc. Finally, we look at reproduction and parenting.

Sexual beings

Is sex possible for a disabled person? Absolutely.

Is childbearing possible for a disabled person? That depends.

These are big questions. It is human nature to desire intimacy and to reproduce. These needs are in no way diminished by a disability.

Sexuality does change for a person with a disability, often in dramatic ways. You will need to ask questions, experiment, and perhaps readjust some of your notions of what sexuality means to you. There are physical limits and adjustments you might face which can affect your sexual options.

Intimacy and sexual pleasure

Intimacy really has little to do with sexual function. Caring touch is what truly satisfies—giving and receiving it. Loving and being loved is ultimately a more powerful human exchange than “raw sex.” Love can be expressed in an infinite variety of ways, as simple as a touch or a kiss, or cuddling together. These experiences have nothing to do with genital contact, and are clearly available to anyone.

At its best, sexual intimacy is an experience of unity, of joining, of feeling as if there is no longer any boundary between you and your partner. For couples who don't have this deep a romantic connection, sex is nonetheless an act of trust, a choice to make yourself vulnerable, and an opportunity to share the incredibly powerful experience of human sexuality. The remarkable sensations, the sense of bliss, the shift in consciousness, the quality of relief and clarity—are all life experiences possible in sexual intimacy. These qualities are no less available to people with disabilities. They simply take other forms.

Culture and sexual mechanics

Modern culture places so much emphasis on the mechanics of sex that the range of sexual possibilities becomes very narrow. Advertising, media, and the easy availability of explicit materials on videotape and the Internet focus on the clinical act of intercourse. This focus places undue strain on sexual adjustment to a disability, as this woman with Traumatic brain injury says:

Results-oriented sex—he gets one big O [orgasm], I get one (or three) then we've “had sex”—is not very compatible with what my body likes right now. Too bad I've grown up in a culture that trumpets this sort of sex above all others.

Men are expected to maintain an erection and complete the sexual act in ejaculation.

For women, the ability to use their hips and to control the vaginal muscles seem indispensable.

Orgasm is particularly glorified as the indispensable goal of sexual contact. Glorya Hale, in Sourcebook for the Disabled says:

Although the aim of most sexual expression may be reaching orgasm, it's clearly not necessary to have an orgasm for both partners to achieve intense sexual satisfaction.

Recent disability

Immediately after an injury or the onset of a disabling disease, you are still defined by your previous identity. A sudden and dramatic change is not easily absorbed. Finding a sexual identity is part of the larger process of finding your identity as a person with a disability.

Sandra Loyer, Clinical Social Worker at the University of Michigan Medical Center works in the Department of Physical Medicine and Rehabilitation. Loyer is part of the team which is immediately involved with spinal cord injury patients. She says,

There are guys who come out of surgery and their first question is “Will I ever get it up?”

People also labor under their existing beliefs, as reported by women studied by the Baylor College of Medicine:

For women disabled in adulthood, it is often a realization of their worst nightmare. The have grown up absorbing the social stereotype that women with disabilities are asexual and are a burden to their families, and they feel that this type of life has now been thrust upon them.

Often, medical personnel, counselors, family, and friends find the topic of sex and disability uncomfortable. They avoid the issue and instead reinforce the notion that sex is not an option. Doctors have been known to suggest that a person with a disability forget about a sex life and move on to other things.

At one time, these attitudes were presented to the medical community as fact. One study in 1967 stated that “to those who have it, paraplegia is sexually totally disabling.” It was left to people with disabilites to find out for themselves what was possible, weighed down by such beliefs, and the resulting lack of support and information.

In their book, Enabling Romance, Ken Kroll and Erica Levy Klein tell of a quadriplegic who had been told by his doctor that he could not be sexual. Then he met a woman with whom he had an immediate physical attraction.

Much to Gary's delight, he found that, despite his being paralyzed, his relationship with Beverly awakened feelings of sexual excitement he never thought he'd experience again.

The book tells that they went on to a long-lasting marriage and satisfying sex life.

Putting sex aside for a time?

You are not obligated to be sexually active, as people who practice abstinence by choice will tell you. You might be engaged in work or a community of friends and family that is satisfying, that provides you with affection and fun and affirmation. Intimacy takes many forms, and not everyone needs to be sexually active in order to feel whole.

It can also be understandable to choose to set sexuality aside when your disability demands so much of you in addressing day-to-day matters. Reasons to abstain might include the difficulty of finding a partner, fear around muscle spasticity, bowel and bladder weakness, the presence of catheters or other appliances, fear of infections, or the simple loss of the urge—more likely repressed than actually gone. You might be taking medications that suppress sexual impulses. For most people, even during times of abstinence, the desire for sensual expression remains. You may need to integrate these other issues of adaptation into your life first, moving onto sex when the time is right are you.

Overemphasizing intercourse

For those who were sexually active prior to their disability, the memory of sexual sensations remain, amplifying their sense of loss entailed by their given limits. They know what they are missing, so the idea of redefining their sexuality might feel like nothing more than compromise and loss. These feelings need not last as you discover what previous—and new—pleasures are now available.

Someone disabled prior to the loss of virginity might carry an unresolved curiosity about intercourse—feelings that might never be satisfied in their lifetime. This is the case for many of the young people who statistically make up a large portion of the spinal cord injured population or for those born without certain capacities for orgasm such as some people with spina bifida. They might envy the general able-bodied population, and imagine a normal an able-bodied sex life to be more ideal than it actually is.

Staying stuck in what you want to happen increases the distance between you and your partner. It reinforces your association of tragedy with your disability, and costs you the pleasures that remain available.

For a person with a disability, sex may become more precious precisely because of the existence of limitations. Once you have lost certain options, those that remain become more valued. If you experienced early fears that sexual activity might not be an option—or worried that sex would be complicated—the discovery of deep intimacy in a relationship becomes all the more precious. Changing the emphasis from intercourse to sensuality and caring intimacy—wherever it may lead—is key.

A 1993 study of men with spinal cord injury performed by Drs. Craig Alexander, Marca Sipski, and Thomas Findley of the Kessler Institute for Rehabilitation in New Jersey found that:

Postinjury there was a dramatic reduction in the percentage of subjects engaging in penis-vagina intercourse. The majority of subjects preferred penis-vagina intercourse preinjury. Postinjury, however, subjects seemed to prefer a wider variety of sexual activities with not as strong a preference for one activity. Moreover, preference for penis-vagina intercourse decreased substantially while preference increased for oral sex, kissing, and touching.

Finding partners

If you’re not currently in a committed relationship, how do you get started?

Finding love is tough enough for anyone these days. Single Americans complain more and more about the difficulty of finding companionship, much less a mate. Singles clubs and personal ads abound, flooded with people on the hunt for a partner. Bringing a disability into these environments is hardly an advantage.

This 23-year-old man with a spinal cord injury struggles with finding a partner:

My hormones are raging, but I have no outlet. I go out a lot with friends, but even friends who were potential lovers before are now certainly just friends. I can't seem to shake that “Wow, you are a great person” line. I know that in the long run I will end up with someone who is great, but I could really just go for a one night stand or two! I'm a pretty good-looking guy so the prospects are there, but what do I do!?

The good news in the search for partners is that there are more singles on the market now. People are marrying later. Women have more options for a profession and independence than society once allowed. Life expectancy is much longer as medical advances preserve our health; making a commitment when you are still young can mean being together for quite a long time, so what's the rush? With later marriages and the increased divorce rate, there are a lot of unattached folks out there looking for love.

You certainly won't meet anyone by sitting at home. You can meet people through volunteer activities, political groups, clubs of all sorts, classes at the local college or community center, or professional organizations and trade shows. Independent Living Centers sponsor activities including social and educational events. Although the percentage of success is not high, you might meet someone through personal ads. It's worthwhile to say hello to someone interesting at the grocery store or movie theater. You never know.

Prostitutes and surrogate partners

Since it is can be difficult to find a partner, being with a professional might solve the need for sensual experience. Some have explored the use of prostitutes or sex workers, such as this 26-year old paraplegic quoted in Enabling Romance:

Despite my paralysis, I wanted and needed sex, and prostitutes seemed like the easy way out. I was a virgin, yet I had this driving need to find out what sex was all about. I started going to this very kind and sincere call girl who taught me a lot about sex and about my own physical capabilities as a man.

The book relates that he ultimately found a steady lover.

Sexuality researcher Mitch Tepper notes that there are risks in interacting with a sex worker prostitute. At the worst, it is possible to acquire a sexually transmitted disease such as HIV from a person who has that much sexual contact with many different people. There have also been cases of a sex worker luring people into situations where they can be robbed. A prostitute is also unlikely to understand the emotional aspects of your disability experience.

Going it alone

Masturbation can play an important role in your discovery of a new sexual identity as a person with a disability. It might even be easier than starting with a partner, no matter how recent or long term your disability might be. The emotional demands of being with a partner at this time can be overwhelming. This is not to say that the right partner couldn't share the process of exploring your sexuality with you in an atmosphere of deep and giving acceptance. However, don’t overlook self-stimulation as an option which can help you find your sexual identity and ultimately find a partner, if that is your desire.

Getting started with someone new

Having met a new partner, it will be necessary to explain your unique sexual style. At first this can be a daunting task. Explaining about catheters, bowels, levels of sensation, and other details is not very sexy. But by demonstrating your willingness to be open and honest you will set the tone of mutual intimacy needed in a healthy sexual relationship. If you show you are unafraid, you will help your partner relax into the process with you.

A new partner might not be comfortable asking what is possible, so it will fall to you to raise the issue. This is the chance to demonstrate that you want to be with this person, that you are attracted to and excited by her them. Once you know the feeling is mutual, then you are in for a wonderful experience and they are likely to be open and accepting about understanding your needs.

One time I had become romantic with a woman, and we had enjoyed some very satisfying kissing on several occasions. The opportunity arrived for her to stay the night, and I did not explain that I had limited penile sensation and did not ejaculate. I just wanted to have what I imagined to be a normal experience without having to explain things. Inevitably, we reached a point where her expectations were not met. She felt she was perhaps not attractive enough, and suddenly there was an emotional obstacle which we never overcame. I learned clearly that the pre-sex talk is crucial for a satisfying and mutual experience.

You may need your partner to assist with clinical tasks such as changing a catheter or helping in the bathroom. This can have a negative effect on creating a romantic mood, but it can also be a shared process that enhances intimacy, even as an opening to sexual intimacy. Once these duties are addressed, a couple can enter into the space of closeness and passion just as any other couple must—with patience, gentleness, and doing those simple things that begin the process of arousal.

The style with new partners is to relax into the process of discovery, to discuss and learn about each other’s needs, to find every possible touch and contact that is pleasurable, and to separate from the various cultural pressures which create skewed expectations. Getting started with honest discussion and exploration puts the focus where it belongs: on people loving each other, and expressing it through touch, trust, and sincere giving.

Pretty damn sexy.

The physiology of sexual function

Sexual function varies greatly according to the disability, its degree and type. The stage of a degenerative disorder such as multiple sclerosis, the level and completeness of a spinal cord lesion, nerves attacked by the polio virus, the area and extent of an infectious disease of the brain or spinal cord—all are examples of what will differently determine sexual function. The better you understand how your body works, the more realistic your expectations will be of your sexual capacities. Know your body, and you will be freed of unnecessary frustrations and more open to the many enjoyable options which remain available to you.

Some physiological features of your disability will not change. A spinal cord injury, depending on the level and completeness, will affect penile or clitoral sensation and response. Weakness and spasticity from advanced muscular dystrophy, Cerebral Palsy, or ataxia may disrupt the ability to rotate the pelvis. Examples like these are a fact of your body and its disability.

Orgasm is a response which men and women generally associate with peak sexual experience. Stages of the sexual response cycle are marked by increases in blood flow and muscle tension. Changes in the body you might experience include erection of the penis in men, enlargement of the clitoris or vaginal lubrication in women, sex flush (blood flow to the skin, an increase in heart rate, blood pressure, a focusing of the mind to the body, and a deep quality of relaxation.

Orgasm is very much a matter of where you put your attention. Sexuality researcher Mitch Tepper says:

Orgasmic sex is about being in the moment and forgetting about quad bellies, atrophy, catheters, and making embarrassing sounds. What's right is what works now.

What's possible for a disabled lover?

What sexual activities remain possible? Start with kissing—an extremely enjoyable and underrated pastime. Don't limit yourself to each other's lips. The face, the ears, the neck, the shoulders, the back—so many places that even the most severe disabilities leave capable of sensations—are extremely erotic. For example, many men have failed to appreciate the pleasure of having their nipples licked.

Touch alone is very powerful. A gentle touch of a hand on your face, or the slow exploration of each other's body is very erotic. Caressing expresses loving feelings, and promotes the relaxed, take-your-time approach to lovemaking which helps a couple reach deeper levels of passion and intimacy.

Sensual massage—in which you incorporate erogenous zones such as nipples and genitals—is an excellent way to sidestep the pressure of performance. There are books which illustrate techniques of massage which are possible for persons with limited grip strength by using vibrators or gloves. You can take turns with this, and allow each other the absolute luxury of receiving totally, knowing that you will be able to return the favor. Sensual massage is a great way to find those previously undiscovered areas of sensitivity.

There are usually many undiscovered places. Try the palms of the hands, inside the elbow, or behind the knee. There are thousands of nerve endings in places like this that light up when kissed or touched but which many people take for granted. Research has shown that when parts of the body lose sensory function, the brain turns up the volume elsewhere. Parts of the body still with feeling become more sensitive.

Changing your style

New sexual possibilities open up when you are willing to change your attitudes and reconsider previous beliefs. You might need to become more the giver of pleasure rather than focusing so much on your own, and perhaps discover a surprising degree of stimulation in that role. You can use sex toys, view adult video, or read erotic material together.

If you are with a fully orgasmic partner, you can “ride the wave,” drawn into the intensity of their climax. The deep, shared connection with your lover is itself an orgasmic experience, a shifted consciousness. If your attention is fully with them, and not thinking about what you aren't feeling, you have a greater chance of experiencing emotions and sensations that will be very satisfying.

While you might shift your attention to your partner, that doesn't mean giving up the idea of being the recipient of direct pleasure for yourself. Sexuality researcher Mitch Tepper writes:

The possibility and benefits of receiving sexual pleasure still need to be pursued. Reciprocal sexual pleasure is seldom impossible.

Bowel and bladder issues

In a scene from the film Waterdance a recently-injured quadriplegic man is with his female lover for the first time since his accident. During their lovemaking his catheter slips, wetting the bed. His reaction is embarrassment and frustration while she attempts to reassure him that it is not a problem. But the moment has been lost. They are caught by surprise in these new emotional dynamics of their sexuality.

Certainly loss of bladder control can interrupt the romance of the moment, but the couple in the film was facing the shock of their first encounter with the issue. When a couple develop a true intimate bond, their bodily fluids need not be repelling. We all deal with body fluids—urine, semen, menstrual blood. Many people will be barely troubled by such slips.

A brief spasm of urination or movement of the bowels might occur during particular movements motions. Some of the same reflexes triggered during sex also control bladder and bowel activity. Choose techniques or positions that are less likely to exert pressure on these areas, or time such activities earlier in your lovemaking before the bladder begins to fill again.

Keep a towel handy just in case. Empty the bladder as fully as possible and take care not to drink excessively before sex. A regular bowel management program will help prevent surprises.

Male erection

While there are many other ways of being sexual, it is the desire of most men to be able to reliably participate in intercourse. It is psychologically gratifying for a man to perform intercourse. As much as their partner might not begrudge a limitation on erection, most partners enjoy this form of sexual contact. More to the point, it is a lovely experience to share.

Most men with spinal cord injury are able to achieve erction. In a study of male sexuality using 38 participants performed in a 1993 study at the Kessler Institute:

With the exception of 33% of complete paraplegics and 6% of complete quadriplegics, all stated they could achieve some type of erection. A substantial percentage of complete quadriplegic subjects and incomplete paraplegic subjects reported erections that lasted over an hour; whereas half of the complete paraplegic subjects reported fleeting erections lasting less than thirty seconds. A surprisingly high percentage of [persons with] complete injuries reported the ability to achieve orgasm with a large percentage of these reporting their orgasms were accompanied by antegrade ejaculation.

How erection occurs and is maintained is very complex, and depends on the physiology of the specific disability as well as psychological factors. Men with a disability experience either psychogenic or reflexogenic erections or both. More spinal cord impairments occur above the area of the spine where psychogenic erectile function is processed in the hypogastric nerve plexus between T10 and L2. This means that fewer men experience erection psychogenically, since their erotic thoughts cannot stimulate that area of the spine, but their reflexogenic processes remain intact. In either case, surface sensation is not necessary to accomplish erection.

Birth control

Disabled women need protection from pregnancy as much as able-bodied women. Some special considerations need to be made for disabled women, especially those who have limited sensations in the genital area. Find a gynecologist familiar with your disability who can advise you on the fine points.

Menstruation is usually interrupted in women after a spinal disease or injury, but usually returns within six months as the body recovers from its shock. Women who are close to menopause may find that their menses will not start again.

The pill is the most effective birth control method, but there is a risk for disabled women of thrombophlebitis—blood clotting as a result of poor circulation in the legs from not walking. Women who experience spasticity are less exposed to this problem since muscle contractions assist in the movement of blood. Your gynecologist can perform a test for susceptibility to clotting.

Some professionals feel that the risk of clotting plus the inability to recognize problems because of limited sensation are cause enough for disabled women not to use the pill. Guidelines developed by Planned Parenthood of New York City specifically recommend against them. Others say that with today's lower dosages, the risks are minimal, and that if clotting has not occurred within six months after disability, it is unlikely to occur with the pill. You must also consider interaction with other medications you might take.

Pregnancy and parenthood

Can disabled women conceive and have babies? Yes, in most cases.

Can disabled men make babies? Increasingly the answer is, “Yes.”

Until recently, not many paraplegic men were producing children. But now men with spinal cord injuries area are increasingly able to make babies. Likewise, spina bifida will affect the ability to produce children according to the scale of the disability and what mechanics of the reproductive system are affected by the disability. The question of childbearing seems to come up more with regard to spinal cord injury, thus its emphasis in the following discussion.

The Baylor College of Medicine study on women with disabilities found that the medical profession is not serving women well with regard to pregnancy. Providers and the women themselves often operated under the false belief that women with spinal cord injury should avoid pregnancy. Recent ten-year studies have found that women with spinal cord injury are giving birth more often, yet:

Very few clinicians have experience managing pregnancy, labor, and delivery in women with SCI. Unfounded assumptions of poor outcomes may influence clinicians to behave as though risks are greater than they actually are. If the chance of a positive pregnancy outcome is considered slim, or threat to the mother's life too high, clinicians may encourage women who want to have their babies to have unnecessary or undesired therapeutic abortions.

This paraplegic woman reports being given incorrect medical advice:

I was 13 when I broke my back and became a person with a disability. (I'm a complete para.) I remember being told by my blushing 60-year-old doctor that I could have children, but only by c-section. I have since found out that that is totally untrue.

Getting pregnant: other approaches

There are a number of methods for becoming pregnant—that is, when the traditional approach isn't working. They range in cost and complexity. Typically you would start with the least expensive and least invasive methods.

Committed couples are willing to invest almost any amount of time, expense, physical stress, and emotion to have a child of their own. It can be a considerable drain. A single advanced procedure can cost as much as $15,000 per try, while using vibration and at-home insemination is very inexpensive. Most who succeed say that, having had their child, it was well worth whatever they went through. Yet the success rate is not high, so there is the risk of being left exhausted and depressed—and broke! You and your partner need to fully explore your feelings about having your own biological child, and weigh what you discover against current medical options to decide what is best for you.

When the man is able to produce an ejaculate—by any of the methods mentioned above—sperm is collected and then the woman is inseminated by injecting the ejaculate with a needle-less syringe. When a procedure such as electro-ejaculation is performed in an office or clinic, the insemination will also be performed there. A couple can increase the odds of success by the use of drugs which stimulate the production of more than one egg per cycle, and by using standard methods to identify the woman's peak ovulation.

Pregnancy

Pregnancy involves major changes to the body and metabolism. Some of the possible effects for any woman include anemia, thrombophlebitis, swelling in the legs, blood pressure changes, carpal tunnel syndrome, infections, constipation, morning sickness, and so on. Any of these problems are minimized by being in good health at the beginning of the pregnancy, and making a commitment to the best pre- and post-natal care.

A pregnant woman using a wheelchair faces additional issues. As you gain weight there will be increased ischial pressure and so added risk of skin breakdown. Be certain to have a proper and well-maintained wheelchair cushion. A different product might be necessary during the later stage of the pregnancy. You will need to do pressure relief push ups or change your posture more often to prevent sores, so some upper body exercise for added arm strength might be in order. As you gain weight you might even need a wider wheelchair, especially if you are being pinched in the hips where there is risk of skin breakdown. Take measures to ensure the health of your skin, keeping it very clean, optimizing your diet for healthy tissue and circulation.

Finding your own way

Yes, there are a lot of adjustments to make, and some issues which are complicated in the already treacherous milieu of love, sex, and babies. But just as there are roadblocks, there are discoveries unique to sex with a disability, if you have the patience and the adaptability to find them. If you can overcome the initial obstacle of being discouraged by all the cultural messages of youth and body image and the over-emphasis on intercourse as sex, then possibilities will expand. Your sexual nature is a gift of your existence, and no disability—no matter how severe—disqualifies you from the capacity for intimacy and sensuality.

Even if sexuality or sensuality is just about kissing, private conversations between partners who have love and friendship, cuddling, or maybe reading poetry with incense and candlelight: Go for it.