Life on Wheels (63 page)

Riders of both manual and power chairs develop elegance in the way they move. The relationship of your awareness to your terrain and your sense in your body of what you feel through your chair is exactly the kind of integral experience taught by Buddhist masters. Wheeling with mindfulness will preserve your energy, reduce stress, and even protect you from the chance of an accident. You might even find that the quality of attention to other aspects of your life will improve.

View a series of brief, video examples of wheeling techniques at www.lifeonwheels.net/wheeling.

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 and a component of your intimate relationships that need not be sacrificed, regardless of the degree of your impairments. 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 sensual experience. 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 sensual life than are the actual physical limits.

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

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 is different from “normal” 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. There are physical limits and adjustments you might face that can affect your sexual options.

At the Baylor College of Medicine, the Center for Research on Women with Disabilities conducted an extensive study, drawing from the responses of 475 women with disabilities and 406 ablebodied women. Margaret Nosek, PhD, principal investigator in the Baylor study, says about that study:

Ultimately, the study is reassuring.

Especially interesting is the finding that level of disability is unrelated to the level of sexual functioning or satisfaction. Other factors were found to be the cause of limited dating, relationship, marriage, and childbearing options.

Even for the most confident women with disabilities, it was harder for them to find partners. Nosek observes about the Baylor study:

This woman has been with her partner for the last 20 years:

In a study on sexual response in women with spinal cord injury (SCI) conducted by Marca Sipski, MD, and Craig Alexander, PhD, at the Kessler Institute for Rehabilitation in New Jersey, they found that:

The study goes on to conclude that those who had a greater number of partners pre-injury had more partners post-injury. Sexual experience and confidence have been found to correlate with successful sexual adaptation for those who acquire a disability. Someone with a disability since childhood will face unique adjustments, in contrast to the way their peers will experience puberty.

There are indeed challenges, but most chair users still have many options for sensual contact available to them. You can discover that you are not only still a very sexual being, but that sex in the context of disability can offer some surprising and gratifying new experiences.

Sexual function actually plays only a partial role in the overall experience of authentic intimacy. Caring touch by itself can be truly satisfying—loving and being loved, giving and receiving it—and still rich with erotic possibilities is a powerful human exchange in and of itself. Love can be expressed in an infinite variety of ways, as simple as a touch or a kiss or cuddling together. These experiences do not necessarily require genital contact, are clearly available to anyone, and in the context of disability often rise to higher levels of preference and satisfaction.

At its ultimate, 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, and 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 might simply take other forms. The emotional, in fact, is a necessary foundation, as for this woman:

Sexuality is about fun and trust and sharing pleasure with another person. Sexuality empowers you with self-worth and reduces the stresses of your daily life. It can even be healing.

Mitch Tepper is the founder of the Sexual Health Network and holds a doctorate in human sexuality education. Tepper—himself quadriplegic, married and a parent—has noticed that, although there is much written about issues of erection, ejaculation, pregnancy, and disability in marriage, there is little said about sexual pleasure for people with disabilities.

Although love in an intimate committed relationship contributes in its own particular way to sexual pleasure, it is by no means a mandatory ingredient. Erotic experience comes in many, many forms, including casual sex— an activity in which some people with disabilities find that society somehow doesn’t believe they are entitled to participate. A different set of possibilities arise with someone you don’t intend to partner with in life, but with whom you share a desire to explore sensual experience in a safe, consensual interaction.

Naturally, your personal values or perhaps religious views will inform your choices regarding with whom you choose to have sexual experiences, but, remember the most important rule: ensure your safety, both physically and emotionally. Your greatest potential for sexual pleasure—and all the benefits of selfesteem, physical release, and sense of personal wholeness— happen when you are with someone who equally wants to share the benefits of the experience. If you’ve found a sexy friend who is game for respectful, consensual sex, you’re entitled.

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 DVD 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:

Men are expected to maintain an erection and complete the sexual act in ejaculation. For women, the ability to move 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:

Initially, any sexual limitations at variance with “norms” as described by the culture can appear to mean a life sentence of loneliness and sensual deprivation. This is simply not true, unless you allow yourself and your options to be defined externally rather than by your own desires and imagination.

Cultural pressures are hard on everyone. Ablebodied persons also struggle to find true sexual identity amidst this cultural noise and the emphasis on externals—large breasts, sculpted muscles, the right car,
etc.
For a person with a disability, the challenge to find sexual identity can seem horribly amplified. False cultural myths promoted for commercial motives can rob you of selfesteem and incorrectly lead you to believe that you have no sexual identity.

Immediately after an injury or the onset of a disabling disease, your previous sense of self remains intact, although it might not feel that way at first. It takes some time for sudden and dramatic change to be integrated, and it may not be an easy process. Redefining your sexual identity is part of the larger process of finding your identity as a person with a disability. It is natural and understandable that concerns about sexuality would arise early after the onset of 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 that is immediately involved with patients with SCIs. She says:

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

It is equally true that a strong male role is presumed, where men are the protectors and seducers of women. A disability forces a core reassessment of what it is to be a man or a woman in society and tests your ability to disengage from socially implied roles and find your own way.

Often, medical personnel, counselors, family, and friends find the topic of sex and disability uncomfortable. They avoid the issue and unintentionally reinforce the notion that sex is not an option. Yet there are people who are familiar with sex and disability—an increasingly well-studied topic— who can comfortably answer your questions and guide you in your efforts to achieve an integrated sexual identity.