Barriers and Strategies in Addressing Abuse: A Survey of Disabled Women's Experiences. (PAS Abuse Survey)

Increasing our understanding of abuse against women with disabilities has been identified as a major research priority (NIDRR, 1994). Evidence suggests that violence and abuse pose significant health risks for women with disabilities, who are at greater risk for abuse than non-disabled women (Furey 1994; Gill, 1996; Young, Nosek, Howland, Chanpong & Rintala, 1996; Stimpson & Best, 1991; Sobsey, Gray, Wells Pyper & Reimer-Heck, 1991; Sundram & Stavis, 1994; Waxman, 1991). The social context of disability, including factors such as inaccessibility, reliance on support services, poverty and isolation, is critical for understanding women's increased risk for abuse. One critical contextual issue relates to women's use of caregivers or personal assistants. Indeed, abuse by personal assistance providers has been identified by women with disabilities as a particularly significant problem (NIDRR, 1994). Approximately 4.5 million women use personal assistance services (PAS), which are defined as one or more persons assisting another person with tasks which the individual would typically do if they did not have a disability (Litvak, Zukas, & Heumann, 1987). The majority of community-based PAS services are provided by unpaid, informal providers (79%), while approximately 11% of users receive a combination of paid, formal and informal services, and only 10% receive exclusively formal, paid services (Rutgers University Bureau of Economic Research, 1990). For many women with disabilities, access to quality PAS is a critical requirement for personal independence and community living (Litvak & Kennedy, 1991). Abuse has unique meaning for women with disabilities in the context of personal assistance services relationships. This meaning is integrally related to the experiences of dependence and interdependence in disability, and encompasses the life experience of disabled women who may require assistance with personal care, equipment, medication, finances and auxiliary services such as adaptive transportation. Thus, when PAS abuse occurs, women's abilities to engage in daily life activities are compromised along with their personal health and safety. Very little is known about women's experience and management of PAS abuse. The majority of research has focused on the experiences of sexual abuse among children and adults with developmental disabilities (Sobsey, 1994). Only a few studies have focused on women with physical disabilities who did not have cognitive disabilities. Sobsey and Doe (1991) were among the first to report the patterns of sexual abuse and assault among children and adults with developmental disabilities. In their review of 162 reported cases of sexual abuse in North America, the mean age of victims was 19.2 years, with a range of 18 months to 57 years. The majority of victims were women (81.7%) and the majority of offenders were men (90.8%). Over 50% of the abusers had a relationship with the victim that was similar to those found among nondisabled victims of abuse. These included biological family members, acquaintances, strangers, dates and step family members. However, in another 44% of the cases, the abusers had a relationship with the victim that was specifically related to the person's disability. Nearly 28% of these included personal assistance services and health care providers. Three studies have focused on the experiences of abuse among women with physical disabilities and they are also the only studies that have examined other types of abuse among persons with disabilities (Nosek, Young, & Rintala, 1995; Young, Nosek, Howland, Chanpong, & Rintala, 1997; Riddington, 1989). The Disabled Women's Network of Canada (Riddington, 1989) surveyed 245 women, among whom 40% had experienced abuse and 12% had been raped. Spouses and ex-spouses were the most common perpetrators, followed by strangers, parents, service providers, and dating partners. …

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