"And as I get to know more and more of my self-worth, it sort of helps me to identify myself, thinking I am a woman created by God and I am so precious and I am so loved and I have so much beauty inside of me. I should let it come out. I should not hide it."
-[36-year-old polio survivor with scoliosis]
There is a long journey of discovery that many women with physical disabilities go through to acknowledge their value and their womanhood. That journey is fraught with assaults from every sector. For women disabled at birth or early in childhood, parents often expected that they will be dependent all of their lives, they must be protected from a cruel society, and they should never hope for much in life. For women disabled in adulthood, it is often a realization of their worst nightmare. They have grown up absorbing the social stereotype that women with disabilities are asexual and are a burden to their families, and they feel that this type of life has now been thrust upon them. One of the most powerful findings of this study was that the majority of women with physical disabilities were triumphant over these assaults. They are living lives of fulfillment and are active, contributing members of their community. We entered the study with questions about what factors made some women more resilient against social stereotypes that they should be asexual and dependent, why some women had a generally positive perception of themselves and others were more negative, and what role family and environment played in their development of sense of self.
"I always felt that my body didn't belong to me."
- [26-year-old polio survivor]
The women with disabilities we interviewed who had a strongly positive sense of self tended to appreciate their own value, asserted their right to make choices that would improve their lives, felt ownership of their bodies, avoided allowing their sense of sexual self to be diminished by negative images associated with their disability, were accepting, not ashamed of their bodies, and took action to enhance their attractiveness.
In the national survey, we found that 78 percent of the women who had disabilities reported high or moderately high self-esteem. On average, however, they reported lower self-esteem than women without disabilities. Interestingly, this did not seem to be related only to having a disability. Whether the woman had a severe disability or a mild disability, incurred disability earlier or later in life, or had ever been in special education didn't make much difference in self-esteem. It was a combination of factors that seemed to make the difference. For example, women with disabilities who were in a serious relationship, worked, or were satisfied with their activities tended to have higher levels of self-esteem, about equal to that of women without disabilities. For women without disabilities, whether they worked or not was unrelated to their level of self-esteem. There was also an association between family expectations and self-esteem. Women with disabilities whose families never expected them to marry or live on their own were more likely to have lower self-esteem.
Abuse had a strong effect on lowering self-esteem. All women who reported any incident of physical or sexual abuse in their lives had significantly lower self-esteem than women who had never experienced abuse. Those women who had disabilities had even lower levels of self-esteem than women without disabilities who had been abused. When women with and without disabilities who had never been abused were compared, their levels of self-esteem were about the same.
Women with disabilities, on average, do indeed express stronger feelings of being asexual than women without disabilities. The percentage who had these feelings, however, was only a fraction of the sample as a whole (16 percent of women with disabilities compared to 8 percent of women without disabilities). Feelings of being asexual were about the same for women who had more severe or less severe disabilities, and women who had disabilities early in life compared to later in life.
There was also a difference in body image, with women with disabilities expressing, on average, more negative feelings. Women with disabilities face all the issues that women in general face in terms of body image (such as size, weight, breast size and shape, and physical fitness), but this is complicated by disability related issues. These issues include scars, deformities, disfigurement, abnormal expressions and gestures, the presence of devices such as wheelchairs, crutches, artificial limbs, and braces, devices for bowel and bladder management, and the possibility of public bowel and bladder accidents. Many women use clothing and grooming to draw attention away from parts of their body that are affected by their disability.
We identified three important factors that affect the sense of self of women with physical disabilities even more strongly than women without disabilities: 1) work, 2) relationships, and 3) abuse. Noticeably absent are factors related to the disability itself. Women with disabilities must deal with the combination of barriers and disincentives to employment faced by all people with disabilities and barriers to employment faced by women in our society. Findings from this study confirm census reports that they are much less likely to be employed than women without disabilities, even though on average they had a higher educational level in this sample, and that they have a lower personal and household income. Women with disabilities have significantly less opportunity to benefit from the positive effect on self-esteem that comes with economic independence. Similarly, as will be described in the next section, they have significantly less opportunity to benefit from the positive effects of establishing romantic relationships. Although abuse is seriously damaging to all women, it is associated with lower levels of self-esteem in women with disabilities.
The question remains whether women with disabilities have high self-esteem because they work, have romantic relationships, and have not experienced abuse, or whether they work, have romantic relationships, and have not experienced abuse as adults because they have high self-esteem. There is certainly need for further analysis of these data and additional studies to answer this question; however, the results obtained so far clearly indicate the importance of esteem building activities and programming for girls and women with disabilities, be they within families, in schools, in churches, incorporated in medical and vocational rehabilitation services, or in the community at large.