-- Alex Comfort, 1975, "The Joy of Sex"
Disabled people are people, and people are people ... virtually nobody is too disabled to derive some satisfaction and personal reinforcement from sex with a partner if possible, alone if necessary.
Helen was an avid skier, mother of three, career woman and role model for her teenage daughter's youth group. She and her husband of 15 years decided to join three other couples on an "adult" ski trip to Aspen -- pristine mountains, wine, hot tubs and a chance to rekindle the romance that was so easily dampened by two careers and three active children. On a particularly icy afternoon, Helen slid down a mogul field and landed with her back against a tree, unable to feel her legs -- her life changed forever. After two months in a rehabilitation hospital, Helen returned to her family, viewing life from a wheelchair -- trying to figure out how to, once again, be a mother, wife and lover. Fortunately for Helen, her doctor and psychologist were tuned in to helping her regain her sexuality and make the transition to enjoy the rest of her life.
Sex is something we've only felt comfortable talking about in public for the last 30 years. The sex lives of the disabled and elderly are still a hushed topic that causes feelings of discomfort amongst the public and unfortunately many healthcare professionals.
What Is Sex?
Sex was traditionally described as foreplay leading to intercourse and male orgasm in the vagina. It was defined in the 1970's by the Hite Report as men who are "doers" and women who were "done to." But, there is a wide range of non-coital expressions of love, eroticism and affection, as articulated in the more recent study by the Kinsey Institute that demonstrated that "sex" means different things to different people. Sex and sexuality are not synonymous and you can easily have one without the other -- a key concept when we start to talk about the sexual issues of people with disabilities.
Society has traditionally viewed sex in a conventional male/female heterosexual orientation, emphasizing the physical aspects of sexuality. But, the last few decades have seen a significant change in attitudes toward accepting a much wider range of sexual behaviors. Sex is not just the ability to perform the motor aspects of sexual activity, but includes the behavioral and cognitive components as well: what we say, see, smell and hear. It is a combination of communication, feelings, interests and desires. A fulfilled sexual life requires competent social skills, body image and self esteem; all things that can be changed by a disability. However, we must remember that problems with self image, inter-personal relationships and sexuality are very common in society at large -- not just the disabled. People with disabilities bring with them their prior strengths and weaknesses.
We, as a society, including the medical profession, tend to view both the disabled and the elderly as "asexual," placing little emphasis on the quality of the life of the sexually disabled person. We view both the disabled and the elderly as being different from the rest of us, not sharing the same feelings and desires. But, the concerns of persons who are disabled do not differ significantly from other individuals. They are first women and men, then disabled.
Clearly, certain things do change with disability. Disability can affect a person's physical, cognitive or behavioral performance. Gender roles can change with disability. The partners of people with disabilities can find themselves as both caregivers and lovers -- creating conflict and stress. The person they fell in love with may be "someone else" after a stroke or brain injury, losing the personality quirks that they found attractive and exaggerating those traits that they never liked, but overlooked.
As in most disability issues, we tend to focus more on what we can see with our eyes. What has been lost physically? However, we are talking about sex, where what goes on in our heads is just as important as what goes on elsewhere in our bodies. We must look at the psychological and psychosocial impact of the disability or chronic medical condition. Spence divides the psychological influences on sexuality into three major areas. These three categories are useful in examining the impact of disability on an individual's sexuality.
Maladaptive Cognitive Factors
• Masculine/feminine roles: Does the illness or disability cause a change in the traditional bread-winner or homemaker role? Does it create dependency issues that the person has never faced before? Does this change in roles affect the couple's sexual identities?
• Fear of failure: The disability may create anxiety over performance at home, at work and in the bedroom. If I am not the same person I was before, will I be able to do the same things? The person may avoid sex, worried that "failure" will be humiliating and they may not know how to be successful in a "changed" body.
• The sick role: They may hide behind their disability, avoiding the responsibilities that still exist as a parent, spouse and lover; hiding behind the myth that people with disabilities are not interested in or can't have sex.
• Negative body image: The person may feel that their altered body image and scars may interfere with intimacy and inhibit sexual functioning. They may believe that they are no longer attractive to their partner or would be embarrassed to seek out a new one.
• Fear of pain: Many chronic diseases and disabilities may have pain associated with particular activities. A husband may avoid sex, fearing that he will "hurt" his wife's arthritic or osteoporotic back.
• Further injury: Couples may fear that sexual activity will bring on another stroke, worsen a spinal cord injury or cause a disease to worsen. It isn't so, but, it will take education and counseling to change this belief system.
• Only for the young: There is a common misconception that sex is only for the young and that as we age it is no longer important.
• Perceptions: How someone adapts to a disability will depend a good deal upon on how they view themselves. Do they view themselves as sexually disabled and incapable of having an intimate relationship with their partner?
• Socialization: As in the rest of our society, the disabled tend to make a decision as to whether they wish to socialize with or marry another person with a disability or expose themselves to the wider array of individuals in their community. They may feel excluded from their former peer group and uncomfortable re-entering their previous social sphere.
• Prior experiences: What were their relationships like, not just sexual, prior to the disability? If they formed unsatisfactory relationships prior to their disability, it is unlikely they will do better without counseling now.
• Pre-morbid personality: Who was the person before the onset of the disability? Did they have a close marital and sexual relationship? How did they react to stress and adversity? Remember, the past predicts the future.
• Distress: Is there evidence of depression, anxiety, or anger? All of them adversely affect sexual desire and performance.
The sexual revolution may have taken place in the 1960's for the able bodied population, but it still has a way to go for the disabled and the elderly. Physicians and health care professionals need to recognize that the disabled have the same dreams, desires and aspirations as the able bodied. Sexual health and satisfaction are an important part of these, but health care professionals have to first ask about them before than can help a person meet their needs.
Follow Richard C. Senelick, M.D. on Twitter: www.twitter.com/RichardSenelick