Part of the reason why I didn't see a gynecologist until I was 28 years old was because I was scared to go because I was afraid of what she would tell me. I was afraid that she would say you can't have sexual relations. And in my early twenties, that wasn't a problem because I didn't have a boyfriend. I blocked it out is basically what I did. I just didn't want to find out. Another scary thing for me is going to the gynecologist and finding out that I may not possibly be able to carry a child.
- [33-year-old woman with cerebral palsy]
Studies that have been done on women in the general population show that they learned about sex primarily from their friends.
For younger generations, more and more information is gained from school and parents. The social isolation experienced by women with disabilities, combined with the stereotype that they have no interest in sexuality, are serious barriers to obtaining information. Some girls with disabilities have fewer opportunities to interact with their peers.
Older women with disabilities were raised in a time when the stereotype was even stronger about sex, and sexuality was considered inappropriate for persons with disabilities. In the public schools of that time, even if girls with disabilities were in classes with their able-bodied peers, they may have been excused from health and physical education classes where important basic information on reproductive health may have been taught. With the establishment of integrated educational systems mandated by legislation first enacted in the mid 1970s, we are seeing more opportunities for girls with disabilities to learn about health and sexuality, both from classes and from peer interaction.
In the national survey, we were interested in finding out when and from whom women with disabilities learned about sex and sexuality, and whether or not they believed they had received adequate information about how their disability affected their ability to maintain good reproductive health and bear children.
The women with disabilities we interviewed told us about numerous frustrations in getting information about sexuality and reproductive health. Like women in general, most learned very little from their families or schools. Some did receive information, but thought that because they had a disability, it didn't apply to them. Many had no idea growing up how their disability would affect their ability to have sex or bear children. They reported learning the most in answer to their questions from friends, books, romantic partners, and, unfortunately, violent experience. Those who received formal rehabilitation reported that sexuality classes predominantly dealt with issues of men and were offered too early during recovery when they had other, more pressing concerns. Many women who received information about sexuality and disability decades ago believe that they have not had the opportunity to gain more current and correct information.
The national survey showed that women with and without disabilities learned about sex and sexuality from generally the same sources, but in a different order of frequency. Women with disabilities listed their sources as books and printed materials first, then their partner, friends, and having sex. Women without disabilities listed having sex first, then their partner, books and printed material, and friends. On average, both groups learned about the physical aspects of sex at about the same age, 13 years old. Only 59 percent of the women with disabilities believed that they had received adequate information about how their disability affects their sexual functioning.
When given a list of professionals who give information and/or advice about sexuality, both groups indicated with the same order of frequency those who had helped them. Gynecologists were selected the most often, then family physicians, and psychologists. For women with disabilities, the fourth most frequently checked category was rehabilitation counselors, but for women without disabilities, it was members of the clergy.
Women with disabilities are able to obtain information about sexuality, but in different ways and often after more of a struggle than women without disabilities. Whereas most women learn about sex more from direct experience with romantic partners, women with disabilities have limited opportunities to have such experiences and to gain sexual knowledge through such means. Women with disabilities who were growing up before the integrated education laws of the 1970s faced even more serious barriers to obtaining information on reproductive health and sexuality. A large portion of this sample of women believed that they had never received the information they needed to understand how their disability affects their sexual functioning and their ability to bear children. There is a strong need for sex education programs offered through the public schools, community organizations, churches, or other resources to be equally available to women with disabilities and to include the message that disability need not be a barrier to a healthy, satisfying sex life. Programs offered in medical rehabilitation settings must offer equal time and information on the sexuality issues of women. Parents must overcome the fears and overprotectiveness that prevent them from imparting sexuality information to their daughters with disabilities. They must communicate the attitude that their daughters will grow up to be valuable, sexual, and marriageable women.