Life on Wheels (65 page)

Since you don’t have to rush—either because you know your erection is not going to suddenly go limp or because you’ve learned to love the kind of foreplay that your partner wants more of, you might just find your new sexual style is actually—in some truly meaningful ways—more appealing to your partner. You might find yourself being considered more of a man, not less.

It’s no small adjustment. Letting go of such a strong basis of your sense of self as your current masculine identity is heavy stuff. But it’s doable, and there is an even stronger self on the other side, with plenty of pleasure to go around.

You might already be in a committed relationship, have a sexual partner and wonder if it’s going to last, or be thinking about embarking on a search for a new partner. Each relationship has its particular dynamics, but all involve how you feel about your body.

The body goes through certain changes—depending on the given disability—about which you might feel insecure or self-conscious. Muscle atrophy that results in very thin, sometimes skeletal limbs is common with SCI. Amputees have their stumps. There might be scars from surgeries, leftover effects of skin rashes, burns, or other skin conditions. Higher-level spinal disabilities can result in a distended stomach and loss in tone in the abdominal muscles. People with quadriplegia have curled fingers and thin hands that they cannot use for handshaking or for certain sexual activities. Spinal fusions or the insertion of rods in the spine can impose a very upright posture that others may misinterpret as an uptight body language. You might adopt a stiff posture for fear that movement will induce muscle spasms. Your disability might entail different shapes or proportions in your body or limbs. These physical realities all affect the signals put out to potential partners. They also influence your sense of self. For this woman with paraplegia, this was a central part of her sexuality and disability process:

Over time, you will adapt to your “new normal” because you will no longer have the point of reference to what your body looked like prior to your disability. You become accustomed to your new shape, and it is just your familiar body. This might sound like it’s another quality of loss, but, in fact, it’s a feature of the amazing adaptive capacity of your being human. This, of course, has something to do with how well you take care of yourself: remember, body-image issues are not unique to disability but affect everyone. Your body-image issues are different and particular to your disability, but take care not to fall into the notion that someone who is ablebodied is confident in their body simply because they don’t have a disability and you do.

Your wheelchair becomes part of your body image and is part of what people react to when they first meet you, so body image is a factor in your choice of wheelchair—although it shouldn’t outweigh function. Choose a chair that fits your personality, but make sure that optimal mobility and safety get the highest priority.

Body image is a powerful force in how the world views you as a sexual person, as this paraplegic woman in her 30s found out in the early years after an SCI:

She went on to marry, have children, and discover a clear and satisfying sexual identity for herself.

The Baylor study reports:

It’s not hard to imagine that these things would be true for men as well. As one woman explained, “The sexiest thing to me is self-confidence.” Feelings of shame and embarrassment can be overwhelming, yet, again and again, people with disabilities have found that these feelings become irrelevant in the presence of a trusted, intimate partner.

There is a cultural assumption that an ablebodied person who stays with someone after the occurrence of a disability is either masochistic or heroic. This is among the most inaccurate of cultural assumptions about disability. Ultimately, people stay together because of love and loyalty, not obligation or sacrifice. Some couples will stay together, some won’t. Staying together is more about people and their values and what they mean to each other, not any social notions about being an “invalid” or a “caretaker.”

When love is real, it shows, as this wheelchair user discovered:

A sudden disability can be a strain to an existing relationship. Some couples might have allowed sexuality to be so much the foundation of their relationship that, in the presence of a sudden disability, they don’t have enough of a foundation in the other aspects of their relationship to carry them through. The issue of changes in their sexual relations can be the final straw that breaks apart a couple whose relationship was not strong to begin with.

In the Baylor study of women with disabilities,
⁵
several issues with existing partners were reported.

A woman with a disability may blame herself for everything that goes wrong in a relationship.

Her husband may take advantage of her self-blame and collude in blaming all their marital problems on the disability.

Nearly half of women with partners responding to the study sometimes felt like a burden to their partners.

Nearly half also felt that their relationship suffered because they were less able to contribute to housework or participate in previously enjoyed activities.

Baylor’s Dr. Margaret Nosek states:

Some reported cases of later-onset disability, in which the men they were with just couldn’t deal with it, and it broke up their marriage. In other cases, it didn’t, it made them significantly closer. Success in marriage didn’t depend on when the disability happened, whether they were born with it, or if it happened later in life.

Some couples don’t succeed. A man who broke his neck 10 years into his marriage recounts the subsequent breakup of his marriage. His wife had been very supportive during his rehabilitation and return home, but then they ran into severe difficulties:

The statistics about couples staying together are encouraging. The rate of divorce after disability is only slightly higher than in the nondisabled population. Successful couples have achieved a bond that goes beyond simple matters of sexual function. Though important, loss of sexual options have less impact than you might think on an existing relationship that is strong. Such a couple is capable of accommodating the disability and enjoying each other. A woman in her 40s describes her relationship:

The right partner—married or not—can make an important difference in one’s overall adjustment to a new disability, as this paraplegic man with an SCI says: