Life on Wheels (64 page)

In their book
Enabling Romance,
Ken Kroll and Erica Levy Klein tell of a man with quadriplegia 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.

They achieved a long-lasting marriage and satisfying sex life. A 23-year-old woman born with cerebral palsy recalls:

There is often not time in rehab to address sexuality when other medical and rehabilitation tasks must take priority. Staff might also be lacking sufficient training in sexuality. Sexuality educator Mitch Tepper gives seminars on sexuality and disability to professionals and observes:

The problem is more pronounced for people who acquire their disability at a young age:

In the Baylor study, only 59% of women felt that they had received adequate information about how their disability affects their sexual functioning.
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Don’t allow anyone to convince you that sex is no longer an option, regardless of your disability. Success is possible in ways you may not have yet explored.

In
Enabling Romance,
Randi—a nurse who discovered a deep relationship with Tom, a quadriplegic, while he was a patient in rehab—describes his change after they became intimate sexually:

The process of exploring your capacities for sexual function, your sexual style, and your sexual identity is one that takes time, as your body reaches medical stability and as you begin to learn from your own experience. Time is on your side. According to Mitch Tepper:

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 have community of friends and family that is intimate and 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, pain, medical challenges, or the simple loss of the urge—more likely repressed than actually gone. You might be taking medications that suppress sexual impulses. You may need to integrate these other issues of adaptation into your life first, moving on to sex when the time is right for you.

Some people may use their disability to avoid sexual issues that have no real relationship with the disability itself. Disability can be a convenient excuse to simply give up the game, driven by fears of which you may not even be fully aware. However, not addressing fears or other feelings means that you might miss out on the potential for greater personal fulfillment through discovery of your sexual identity—all the more in the context of your disability.

Past abuse, failure, or adjustment to your disability might simply feel overwhelming. A period of recovery and healing might be necessary and entirely appropriate before you can address your sexual identity. Just remember that, for many people with disabilities, these issues have been surmountable.

All of us face the work of sorting through our sexual psyche. The challenge of discovering your identity as a sensual disabled person can bring new levels of exploration to this universal life process in which absolutely everybody is engaged. Ultimately, our deepest needs are for intimacy, affection, trust, and love. Some people find that they are able to live a lifestyle abstaining from sexual activity yet rich in these affirming qualities in relationship. In the
Journal of Rehabilitation,
A. Frankel notes:

Loss of sexual function—multiplied by the burden of inaccurate messages from some healthcare providers, family, and the broader society— can erode your self-confidence. If you were already struggling with issues of sexuality prior to your disability, they will certainly not just disappear. They will have an impact on your overall adjustment and so need to be addressed as directly as are the physical or social aspects of your disability experience.

Even if you accept that you will have some sexual limits, and you want to relax and have as much pleasure as possible for yourself and your partner, there can be a feeling of having been left on the sidelines. You might find yourself experiencing feelings of resentment toward your partner for having what seems to be a more substantial sexual response than you experience. Despite the advice of many rehab professionals or well-meaning loved ones, “thinking positively” is not necessarily easy, independent of doubts or painful emotions, nor is it automatic. You may want to take pleasure in your partner’s enjoyment and in providing your partner with sexual satisfaction, but you may still struggle with other feelings. If negative feelings can’t be worked out through trusting communication, the support of a counselor may be called for if you want the relationship to succeed.

Ablebodied partners may find themselves feeling guilty over the fact that they are capable of sensations that are not possible for you. Just as you may struggle with emotions unique to your sexual experience, the feelings an ablebodied partner might experience are natural and deserve to be recognized and discussed. Often these feelings can be brought into perspective, if not altogether resolved. A partner experiencing guilt, for example, can learn that his pleasure actually reinforces your confidence in yourself as a sexual partner. The real issue is equal pleasure, not equal intensity.

For those who were sexually active prior to their disability, the memory of sexual sensations remains, amplifying their sense of loss. 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 available.

People disabled prior to the loss of virginity might carry an unresolved curiosity about intercourse—feelings that might never be satisfied in their lifetime. They might envy the general ablebodied population and imagine an ablebodied sex life to be more ideal than it actually is.

Losing the capacity for intercourse in adolescence includes some unique issues, coming at a time when the anticipation of a first sexual experience is extremely high. This grand sense of expectation can linger for a long time. A meaningful rite of passage has been missed. Experience ultimately teaches us that our maturity is based on values and accomplishments—and pleasures—other than genital intercourse.

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.

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 treasured. Changing the emphasis from intercourse to sensuality and caring intimacy—wherever it may lead—is key.

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

Once you gain sexual experience in the context of your disability, you will find that your relationships are not defined by your disability as much as you might have imagined.

Orgasm is different for everyone, defined in each individual’s terms. If you have acquired a disability later in life, you should know that you can redefine fine what orgasm is for you, even if it is different from what it might have been in the past. As this married C5 quadriplegic man found:

Orgasm is not exclusively either physical or mental. Or emotional. The feelings and chemistry if you are being sexual with a partner—as compared to stimulating yourself—are all part of the formula as well. All of it is part of the whole, all of it interacts, and all of it is brought to bear in the course of redefining orgasm—toward the goal of allowing yourself the most optimal experience and pleasure your body allows. As this woman with an SCI learned:

There are a lot of ways that a man identifies himself as manly. Physicality is a big part of this, whether it’s about being a construction worker or an athlete—in bed or otherwise. Loss of physical capacity is a major adjustment when your very identity is substantially based on it. That is where men’s sense of power resided, that’s how you impressed and attracted your intimate partner. It’s a real loss.

In fact, men are wired by evolution and culture to play the role of protector and provider. As much as historically recent social changes point men toward being more “sensitive” and women are sharing more of the financial load, the expectation to protect and provide is deeply set in men. A disability is a direct threat to that part of what the male psyche thinks it is supposed to be.

Is it just as manly—and attractive—to be a person who has a strong sense of yourself, who believes in values that are infused throughout your life and actions, that you mean your word and are reliable, are decisive, and are able to do your share in getting your needs met and those of the ones you love? Try to look beyond the physical, and you might well find that there is plenty to base your masculine identity on, and that you’re anything but “crippled.”

Which brings us to the penis. Granted, it may not be up to its usual performance, and perhaps you are no longer capable of ejaculation—something you and your partner might have valued a great deal. More real loss, absolutely.

When it comes to erection, though, you probably don’t have much to worry about. The pharmaceutical solutions that are out there—be they pill or injection—work really well once you learn how to use them. In some cases, men with higher level SCIs are prone to dysreflexia that preclude the use of these drugs, but that is something to be explored and possibly solved working with your urologist.

Which brings us back to the question of what it is to be a man. In heterosexual relationships, at least, many women report that their men are in too much of a rush for insertion, and, once that happens, ejaculation is not far off. All done, lovemaking over. Too quick for a lot of women. Ask around, and women will tell you it’s true.