"My mother wasn't around much, and I always felt in my sisters' way, like I held them back from things they wanted because they had to help care for me. My sisters would slap me and shut me in my room." [32-year-old woman with congenital osteogenesis imperfecta]
The issue of abuse emerged from this study with unexpected force. We were unprepared and found we had a lot of homework to do. On examining the literature on abuse of both women in general and women with disabilities, we found very little crossover. Although there has been a wealth of research on domestic violence and sexual assault against women, with clearly defined variables and strong scientific methodology, it almost never incorporates the element of disability. The literature in the disability arena has focused mostly on abuse of developmentally disabled children. A few studies have looked at the situation of women with disabilities; however, concepts are not well defined and the samples mix children and adults, and include the full spectrum of mental, sensory, and physical disabilities. Further, we found that the system of programs for battered women was only beginning to incorporate the need for accessibility for women with disabilities, and the system of disability-related services was almost totally unprepared to deal with issues of abuse. This is indeed new territory.
In the national survey we defined emotional abuse as being threatened, terrorized, corrupted, or severely rejected, isolated, ignored, or verbally attacked. Physical abuse is any form of violence against the body, such as being hit, kicked, restrained, or deprived of food or water. Sexual abuse was defined as being forced, threatened, or deceived into sexual activities ranging from looking or touching to intercourse or rape. In the survey, we included questions about which of these three types of abuse the women had experienced, and, for each experience, the age at which the abuse began and ended and their relationship to the perpetrator. Analyses we have conducted so far examined differences in the rates and types of abuse experienced by women with and without disabilities.
"After my child was born, my husband became jealous and didn't want me to get up and take care of her. He would take my chair away from me and tied me up when I pulled myself out of bed. I left him the first chance I had." [49-year-old woman with spinal cord injury since age 17]
Twenty-five of the 31 women with disabilities we interviewed in the first part of this study told us about 55 separate experiences of abuse. In many cases, these experiences strongly affected the way the women felt about themselves and their ability to engage in satisfying romantic relationships. Although most incidents of abuse were similar to those women in general experience, such as verbally abusive parents or partners, battering, and rape, some types of abuse were specifically disability related, such as withholding needed orthotic equipment (wheelchairs, braces), medications, transportation, or essential assistance with personal tasks, such as dressing or getting out of bed. Some factors that increase the vulnerability to abuse among women with disabilities are their physical difficulty in escaping dangerous or abusive situations, a need for assistance with personal tasks from the perpetrator, their higher rate of exposure to institutional facilities (including hospitals), and the stereotype that they are dependent, passive, and easy prey.
The national survey showed, however, that overall, women with disabilities appear to be at risk for emotional, physical, and sexual abuse to the same extent as women without disabilities. The prevalence of any abuse (including emotional, physical or sexual abuse) for women with and without disabilities was 62 percent for both. About the same proportion of women with disabilities compared to women without disabilities reported emotional abuse (52 percent versus 48 percent), physical abuse (36 percent for both), or sexual abuse (40 percent vs. 37 percent). When the categories of physical and sexual abuse were combined, 52 percent of women with disabilities and 51 percent of women without disabilities responded positively. None of these types of abuse was significantly different for women with or without disabilities.
In the survey, husbands and live-in partners were included in the same category. More husbands abused women (both with and without disabilities) emotionally (26 percent) and physically (17 percent and 19 percent) than other perpetrators. Parents were the next most common perpetrators of emotional and physical abuse for both groups of women. Strangers were the most often cited perpetrators of sexual abuse for both groups (11 percent for women with disabilities and 12 percent for women without disabilities).
Women with disabilities were significantly more likely to experience emotional abuse by attendants, strangers, or health care providers than women without disabilities. There was a trend for more women with disabilities to experience emotional abuse by mothers, brothers, and other family members, as well. Two percent of women with disabilities were physically or sexually abused by attendants. There was a trend for women with disabilities to be more likely to experience sexual abuse by health care providers.
Women who had experienced abuse that lasted longer than a single incident were examined to determine differences in the duration of abuse. Women with disabilities experienced all types of abuse (emotional, physical, or sexual) for significantly longer periods of time than women without disabilities.
Women with disabilities face the same risks of abuse that all women face, plus additional risks specifically related to their disability. Rates of abuse were extremely high in both groups of women in this study. It is notable that women with disabilities tended to experience abuse for longer periods of time, reflecting the reduced number of escape options open to them due to more severe economic dependence, the need for assistance with personal care, environmental barriers, and social isolation. It is difficult to separate the effect of disability from the effects of poverty, low self esteem, and family background in identifying the precursors to violence against this population. There is much more that we need to know about how women with disabilities escape or resolve abusive situations. This study has shown the critical magnitude of this problem. Steps must be taken to train girls and women with disabilities to understand inappropriate touch, including in medical settings, and to learn how to recognize and avoid or resolve abusive situations in the family and in the community. Important elements in this training are informing women that they do not need to tolerate abuse and linking them to community resources that could help them expand their options for removing violence from their lives. Consider this a loud call for advocacy to make all programs for battered women fully accessible, and all disability service programs equipped to identify abused women and refer them appropriately.