Impact Impact Feature Issue on Violence Against Women with Developmental or Other Disabilities

Women with developmental disabilities face double discrimination. As women and as individuals with disabilities they experience numerous inequities and injustices on a daily basis (Asch and Fine, 1988; Boyle, Rioux, Ticoll, & Wight-Felske, 1988; Hanna & Rogovsky, 1991; and Hutchison, Beechley, Foerster, & Fowke, 1992). At the root of this double discrimination are sexism and ableism, which set standards for “woman” and “normal” that exclude, devalue, and marginalize women with developmental and other disabilities.

As a result of this double discrimination women with disabilities have higher unemployment rates and earn less than women without disabilities and men with and without disabilities (Altman, 1982; Jans, & Stoddard, 2000). They have the least amount of education, training, and rehabilitation services (Menz et al. 1989; Altman, 1985) compared with women without disabilities and with all men. They have the overall smallest amount of social welfare benefits in comparison to men with disabilities (Altman, 1985). Women with disabilities, in general, are less likely to marry (Asch and Fine, 1988; Bowe, 1984), have difficulty maintaining custody of their children if they divorce (Corbett, 1989), have higher rates of divorce than men with disabilities (Chartbook on Women and Disability, online resource; Fine and Asch, 1981), and they experience high levels of intimate personal violence (Young, Nosek, Howland, Chanpong, & Rintala, 1997; Riddington, 1989; Sobsey and Doe, 1991). In addition, many women with developmental disabilities have been isolated for years in institutions, have experienced forced sterilization, and have often been segregated from their communities and from having intimate relationships with men due to societal fears of the bearing of genetically “inferior” children.

Even though many women with developmental disabilities living in the community today experience new freedoms, rights, and responsibilities, they still confront cultural stereotypes and discriminatory practices. Double discrimination perpetuates violence against women with developmental disabilities, justifying that violence on the basis of their devalued status in society – in some people’s minds, they’re not really “women” and not fully “human.” And they are also perceived as easy targets. As a result, women with developmental disabilities have among the highest rates of physical, sexual, and emotional violence by spouses, ex-spouses, boyfriends, and family members of all women, with and without disabilities.

What then should we consider as useful steps to end this devalued status, and to stop the violence against women with developmental disabilities? The response proposed here is fourfold: (1) education and empowerment of women with developmental disabilities; (2) changes in domestic violence and sexual assault services; (3) changes in disability services; and (4) decreasing the double discrimination resulting from ableism and sexism.

Educating and Empowering Women with Developmental Disabilities

Women with developmental disabilities need support and encouragement in personal development and societal interaction to shed the devalued societal status that makes them the most vulnerable population for physical and emotional violence and sexual assault. They must be the first priority for receiving information on self-advocacy and protection from violence (Berkeley Planning Associates, 1996, as cited in Lagergren-Fieberg & Schaller, 1998). They must become empowered through learning specific vocabulary regarding body parts, touch, and sexual acts, enabling them to recognize and speak out about abuse (MCASA, 1999). There are many avenues through which women with developmental disabilities and their families can obtain factual and specific information on domestic and sexual violence, such as having speakers and programs at residential living sites, work/day programs, self-advocacy group meetings, and other community settings.

Beginning with the family and extending through all the points of social contact, girls and women with developmental disabilities must be involved in educational and social programs and activities which foster positive emotional and social development. Girls and young women with developmental disabilities should be developing self-determination skills throughout their school years. Learning appropriate and effective interpersonal behaviors, and learning ways to deal with physical, emotional, and sexual boundary violations, abuse, and assault should be contained within a self-determination curriculum. They need to learn what are positive relationships that include personal and sexual intimacy and how these relationships are different from professional relationships (e.g., personal attendants), casual acquaintances and friendships. It is critical for girls and women with developmental disabilities to learn to be comfortable talking about their sexuality and intimate relationships with mentors or significant others who are able to offer experience and information that support them in making self-affirming and positive decisions.

And, most importantly, positive peer and adult mentoring and role modeling combined with cooperative learning need to be educational and human service expectations, not additional activities. This must be at the center of how we teach girls and women with developmental disabilities to live effectively in the world – connecting them with real-life role models, women with and without developmental disabilities who operate in their communities as contributing, resilient adults.

Changing Domestic and Sexual Violence Services

Over the past two decades, persons with disabilities, families, and allies have established a solid record of advocacy promoting the basic human and civil rights of persons with disabilities. These latest developments combined with the feminist movement have enabled the issue of violence against women with developmental disabilities to emerge, and provide a strong foundation from which to develop strategies to decrease the violence. Domestic violence and sexual assault practitioners can draw upon this foundation to enhance their work with women with developmental disabilities.

First, it is recommended that domestic violence and sexual assault practitioners receive training and background information on the disability rights movement, significant legislation, research about violence against women with developmental disabilities, and current communication and educational “best practices” for the delivery of services. Taking the necessary time to obtain accurate information will assist in understanding the disability culture. It will also enhance communication, therapeutic, and advocacy skills, enabling domestic and sexual violence agencies to interact more effectively with women who have developmental disabilities. The newly acquired information should be integrated into individual professional practice and agency programmatic systems and physical structures.

Second, it’s suggested that domestic violence and sexual assault practitioners expand their community education efforts about preventing and dealing with violence. Outreach should specifically include girls and women with developmental disabilities, their families, educators, and developmental disability service providers. In addition, domestic violence and sexual assault professionals should be included as presenters in training programs within agencies and at colleges that prepare people to work with individuals who have developmental disabilities in a variety of settings.

Third, for years, the domestic violence and sexual assault fields have been led and staffed by survivors of personal violence, abuse and sexual assault, as well as those interested in women’s rights issues. Staff and volunteer recruitment within the crisis fields should be specifically inclusive of women with developmental disabilities. Women with developmental disabilities can serve as positive mentors and role models for girls and other women with developmental disabilities. In addition to this mentor/modeling role, women with developmental disabilities can work in domestic violence and sexual assault programs as community educators, court advocates, outreach coordinators, support group facilitators, writers, advisory board members, agency research partners, technical assistance consultants on physical and programmatic accessibility for shelters and agencies, and public policy advocates.

Lastly, professionals from the domestic violence, rape crisis, special education, and disability fields, including and along with women with developmental disabilities and their families, must work collaboratively. Some strategies may include jointly speaking to policy-makers or state representatives, (i.e., information sharing, resource sharing) to develop effective programs and laws for women with developmental disabilities who have been victimized. Domestic violence shelters, sexual assault programs, and rape crisis centers must evaluate their services and draw upon the latest research and demonstration models that suggest innovative and successful strategies to improve their work with women with developmental disabilities. They must provide outreach to women with developmental disabilities in their communities in ways that support women to safely identify abusive or violent episodes and to determine what course of action is safest to take.

Changing Disability Services

Developmental disability specialists are in the best position to understand how to integrate prevention and intervention strategies and information related to domestic and sexual violence into the delivery of services with women with developmental disabilities. It is not acceptable that personal care attendants are the second highest group of individuals who commit acts of violence against women with developmental disabilities (in fact, 99% of the physical and sexual assault perpetrators are known to the victim with a disability and that person is often an integral part of her daily life, MCASA, 1999). Professionals who work with women with developmental disabilities have to accept responsibility for this situation and develop policy and practical solutions to end it. There is dire need for stronger restrictions on care attendants and quality care for persons with developmental disabilities. Including women with developmental disabilities, survivors of violence, and allies in defining the problem and formulating the solution is critical.

Disability service providers must educate themselves about the nature of intimate personal violence generally and specifically about violence against women with developmental disabilities. They need to determine how they will incorporate this information and understanding into the delivery of their services. They must honestly examine the degree to which their own personal biases and professional behaviors may support the root causes of this violence at an unconscious or conscious level towards the women with whom they work. They should evaluate the effectiveness of local support services to increase the positive impact of their referrals. And they should cooperate with domestic violence and sexual assault programs to expand their knowledge about the services and programs provided specifically for women with developmental disabilities. Also, it is critical for developmental disabilities professionals to advocate with domestic and sexual violence specialists for accessible crisis services for women with developmental disabilities who have been victimized.

Whenever possible, developmental disability professionals should team with domestic and sexual violence professionals and activists to promote the empowerment of survivors with disabilities. Asking questions about abuse and addressing issues of abuse as part of a routine protocol while working with women with developmental disabilities, the professional can provide the necessary resources and support help the woman break the cycle of violence in her life (Lagergren-Fieberg & Schaller, 1998). It is also essential that all professionals, families, and women with developmental disabilities advocate for increased program funding and legislation that advances the rights of domestic violence and sexual assault victims.

Challenging Sexism and Ableism

We have begun to break a long tradition of silence about a most horrifying and difficult problem. We have the courage and the commitment. Developmental disability and violence professionals, women with developmental disabilities, and their families must work together to find the solutions. Double discrimination against women with developmental disabilities is a complex systemic and personal problem. Those of us who are professionals must examine and improve our work with women who have developmental disabilities and who have experienced violence and abuse; we must ensure that we provide equitable and empowering services. We must also all act collectively at policy and programmatic levels to educate and advocate for social, personal, economic, political, and educational equity for all women, and particularly for women with developmental disabilities who have been the most marginalized and have the greatest barriers to overcome.