"In the movies, the woman can go and she can jump on the guy's lap and do all these gymnastic things, but I have to get him to put me in bed. That takes out some of the spontaneity, but it doesn't take out the thrill."
- [37-year-old married polio survivor]
One of our investigators who has a severe physical disability was overheard saying, "I'm sure I could function just fine sexually, if I could only find a man!" This illustrates one of the main dilemmas facing women with disabilities. Social attitudes constitute a significant, if not insurmountable, barrier to realizing sexual potential. For this reason, many of the questionnaires that have been developed and validated for assessing sexual functioning for women in the general population are not relevant when applied to women with disabilities. They tend to focus on frequency of sexual activities of various sorts. For women with physical disabilities, frequency is more often a reflection of opportunity rather than interest or ability. To circumvent this problem, we let the assessment of sexual functioning in this study generate from the comments of the women themselves. In the interviews that preceded the national survey, the participants spoke about intimate touch as much as sexual intercourse. Sexual functioning for them included a broad range of activities. Throughout the survey, we were very careful to use the term "partner" as opposed to "boyfriend" or "husband" to allow accurate responses from homosexual or bisexual participants. We assessed sexual functioning in terms of desire, both fulfilled and unfulfilled, frequency of sexual activities, satisfaction with sexual activities, and physical problems encountered. We also examined the influence of various psychological, social, and environmental factors on level of sexual activity and degree of satisfaction with sex life.
"I think my disability has affected my response to sex and this happens with a lot of MS people. I am not easily aroused. It takes a lot of patience and I'm very grateful that my husband has had a lot of patience. I do not probably respond as fast as most females do to sexual stimulation."
- [51-year-old married woman with multiple sclerosis and post-polio syndrome]
Almost all of the women with and without disabilities in this study reported having had sexual activity at some time in their lives. Only 3 percent of the able-bodied women and 6 percent of women with disabilities had never had sexual intercourse. About half of women with disabilities are currently sexually active, compared to about two-thirds of women without disabilities. There were, however, significantly lower rates among women with disabilities of having intimate touch (58 percent versus 68 percent) and sexual intercourse (49% versus 61%) within the past month. Most problems with sexual activity reported by women with disabilities were different from those reported by women without disabilities. Women with disabilities reported that problems with sexual activity often related to weakness (40 percent), vaginal dryness (39 percent), lack of balance (38 percent), hip or knee pain (32 percent), and spasticity of legs (28 percent).
The women with disabilities we interviewed for this study talked about sexuality in terms of desire, activity, response, and satisfaction with their sex lives. We first investigated whether or not there were differences between women with and without disabilities on these four dimensions. We found significant differences in level of sexual activity, response, and satisfaction, with women with disabilities reporting much lower levels. There were no differences, however, between the groups on sexual desire.
Next, we wanted to know if age at onset of disability made any difference in sexual functioning. There were no differences in levels of sexual activity, response, or overall satisfaction with sex life. Women who had childhood onset of disability reported higher levels of sexual desire than women with adolescent or adult onset of disability.
Finally, we examined how psychological factors and factors related to disability, social status, social attitudes, or environmental barriers affected sexual functioning among women with physical disabilities. Sexual desire was most related to social status variables, including work status and age. Women who were younger expressed more sexual desire. Women who perceived more negative stereotypes in society's attitude toward sexuality and disability experienced higher levels of sexual desire.
The strongest predictor of sexual activity was, not surprisingly, whether or not the woman lived with a significant other. Secondary predictors were in the psychological domain. Women with disabilities who had a more positive sexual self image and who perceived themselves to be approachable by potential romantic partners also had higher levels of sexual activity. It is very notable that severity of disability was not significantly related to level of sexual activity.
We were not successful in predicting sexual response. The only factors that had some relationship were more positive attitudes toward the use of assistive devices, less concern about stereotypes, and higher household income. It is difficult to interpret the meaning of this finding. Women with spinal cord injury and stroke reported the lowest scores.
Social status and psychological variables were the best predictors of sexual satisfaction. Women with disabilities who lived together with a significant other, and therefore had a higher level of sexual activity, also reported greater sexual satisfaction. Interestingly, lower household income was positively associated with sexual satisfaction. Women who felt more positive about their use of assistive devices and who had never experienced sexual abuse reported higher levels of sexual satisfaction.
"I still pee sometimes during sex. It's just one of those things where you just have to lay a towel down. Or get the mat out. That's what we do, get the mat and the towel. It's no big deal to him."
- [26-year-old married woman with paraplegia]
Most of the differences in sexual functioning between women with and without disabilities can be accounted for by the difficulties women with disabilities experience in finding a romantic partner. Level of sexual desire was the same, but level of activity was less because significantly fewer women with disabilities had partners, and, therefore, level of satisfaction was less. For women who had a partner, levels of sexual activity were about the same, regardless of disability, but level of satisfaction with sex life was still lower for women with disabilities. It was interesting to note that severity of disability was not related to level of sexual functioning or satisfaction with sex life. It must be acknowledged, however, that in some cases problems related to disability, such as weakness, pain, or spasticity, can affect the physical aspects of sexual functioning; and problems associated with certain types of disabilities, such as the neurologic effects of spinal cord injury, stroke, or multiple sclerosis, can affect sexual response.
There is a need for more medical research and collaboration with physicians and physical therapists on ways that weakness, pain, and spasticity can be managed to allow for more satisfaction from sexual activity. In previous sections, we have discussed the importance of expanding opportunities for self-esteem building and socialization activities for women with physical disabilities. If significant progress can be made in those areas, improvements in sexual functioning will follow.
