or years, because of my cerebral palsy and certain other physical difficulties, I doubted my ability to give and receive pleasure in sexual intercourse. For a long time I did not want to ask my doctors about sex because I felt that a negative answer would make me regard myself as nonhuman— such is the value our society places on sexuality. . . .
Finally, since I was extremely hazy about what physical movements were involved in coitus, I decided to go to a movie. After the first two minutes I got the idea down pat and saw that I was perfectly capable of performing. My self-image skyrocketed. I, just like other women, had something sexual to offer a man!
There are various reasons why sexuality of the handicapped was avoided for so long and why it makes many professionals intolerably uncomfortable. First, most physical disabilities alter the looks of the person—deformities, bizarre head and arm motions, drooling, and poor eye-contact. Few professionals are able to see their patients as sexually desirable, and there is even the subtly expressed attitude that there is something a bit wrong with anyone who is sexually attracted to a disabled person. You can imagine what such an attitude does to the self-esteem of the handicapped person—"Anyone who wants me must be nuts!"
The couple too disabled to have sex by themselves must decide whether they want to forgo sex or whether they want to make love in spite of needing help to do so. There are many reasons for making love—recreation, bribery, consolation, procreation, the desire for one-on-one attention, religious experi-
ence. Some of the reasons are more amenable than others to third-party participation. But I feel strongly that no couple who wants to have sex should be denied the necessary help to do so, and that, if they live in a health-care facility, it is the duty of the healthcare professional to provide such help.
Initial access to potential partners is extremely limited, in large part due to my distorted speech. Opportunities to meet are few, and when they do exist, men who are not trained to work with handicapped people tend to shy away from me. Somehow I hardly think the father of young children who held me in his arms as he helped me into the YWCA swimming pool was making plans to have me as a future bed partner. Even if I did get to know a guy well enough so that the moment for sex drew near, there would be the problem of birth control. An able-bodied woman can have herself fitted with a diaphragm with very little failure, and furthermore she can insert the device herself at the opportune time. . . .
Intellectually I know that sexually I can perform— the movie proved it. Yet at what might be called the subintellectual level I doubt my body’s ability to give another pleasure. Rarely does my body give me pleasure. When I tell it to do something as often as not it does exactly the opposite, or else it flares out in wild, tantrumlike motions. How could my body possibly conform to the wishes of an expectantly excited lover? This is the question I still ask myself.
Source: Sutherland, 1987, pp. 25, 27.
anger, resentment, anxiety, and depression, all of which can adversely affect sexual desire and functioning. Many illnesses cause disfiguration and force a person to deal with radical changes in body image; after removal of a limb, breast, testicle, or the need to wear an external bag to collect bodily waste, many people wonder: How could anyone possibly find me sexually attractive?
Serious illness often puts strains on loving relationships. A partner may be forced to become nurse, cook, maid, and caretaker as well as lover. The caretaker of an ill person may worry that the sick partner is too weak or fragile for sex or be too concerned with his or her illness to want sexual contact. Still, many couples do enjoy loving, full relationships (see Personal Voices, “Stories of Love Among the Disabled,” on page 488).
A majority of the research on the sexuality of the disabled has been done on men, and physicians are more likely to talk to their male patients about sexual issues than their female ones. Healthcare workers often assume that female patients do not want to have sex or that they are interested only in whether or not they can still do it; yet the little research that exists on gender differences in the sexuality of the disabled has found that disabled women have more sexual difficulties than disabled men (Fine & Asch,
1988) .
Another common assumption is that all patients are heterosexual, and so, for example, disabled lesbians may be given contraceptive advice without being asked if they need it (O’Toole & Bregante, 1992). Heterosexual women looking for information about sexuality and their particular disability may find little, and lesbians may find none at all.
The real questions that sick people and their partners have about their sexuality are too often ignored by medical professionals. They may be questions of mechanics, such as “What positions can I get into now that I have lost a leg?”; questions of function, “Will my genitals still work now that I have a spinal-cord injury?”; questions of attractiveness, “Will my husband still want me now that I have lost a breast?”; even questions of appropriateness, “Should I allow my mentally ill teenage daughter to pursue a sex life when she may not understand the consequences?” We will now review a sample of physical and mental challenges that confront people and also some of the sexual questions and problems that can arise.