Our research on violence against women with disabilities has encountered several policy issues, which, if addressed, could reduce the risk of violence and greatly improve the availability of help for women with disabilities in violent situations. We offer the following observations related to:
Programs for battered women commonly have architectural, attitudinal, and policy barriers.
For women who are in life-threatening abusive situations, crisis intervention includes escaping temporarily to a woman's shelter, escaping permanently from the abuser, and having an escape plan ready in the event of imminent violence if the woman must remain with the perpetrator. These options may be problematic for the woman with a disability if the shelter is inaccessible or unable to meet her needs for personal assistance with activities of daily living, if there is no accessible transportation to the facility, if the shelter staff are unable to communicate with a deaf or speech-impaired woman, if she depends primarily on the abuser for assistance with personal needs and has no family or friends to stay with, or if she is physically incapable of executing the tasks necessary to implement an escape plan, such as packing necessities and driving or arranging transportation to a shelter or a friend's home. She may also be unable to make arrangements to take her children with her, and worry about leaving them alone with the perpetrator. She may have to devise a safety plan with a trusted friend or relative to help her make arrangements to escape.
Andrews and Veronen (1993) list four requirements for effective victim services for women with disabilities. First, service providers need to provide adequate assessment of survivors, including questions about disability-related issues. Second, survivor service providers should be trained to recognize and effectively respond to needs related to the disability, and disability service providers should be trained in recognizing and responding to physical and sexual trauma. Third, barriers to services should be eliminated by providing barrier-free information and referral services, by ensuring physical accessibility to facilities, by providing 24-hour access to transportation, to interpreters, and to communication assistance, and by providing trained personnel to monitor risks and respond to victims receiving services through disability programs. Finally, persons with disabilities who are dependent on caregivers, either at home or in institutions, may need special legal protection against abuse.
According to the National Coalition Against Domestic Violence and the National Coalition Against Sexual Assault, inaccessibility in battered women's shelters is a serious problem. These programs generally operate on very thin budgets and covering the cost of accessibility modifications and services is a substantial challenge. There is currently a very high and growing demand for these shelters, making bed availability a problem for all women. According to Veronica Robinson, former director of the abuse program at Access Living in Chicago, (personal communication, Nov. 11, 1996), making shelters accessible and generating an expectation that women with disabilities can be served there will only create cynicism when no beds are available. Vigorous advocacy is needed to increase funding for these programs and to expand options for temporary or transitional housing.
Despite these serious financial barriers, quality standards must be implemented for battered women's programs. Buildings must comply with the architectural requirements of the Americans with Disabilities Act, state laws, and local ordinances. Auxiliary aids and services must be made available. Program staff should receive training on basic disability facts, ways to communicate with women with disabilities, and the unique vulnerabilities and reduced escape options faced by women with disabilities living in the community and in institutions. In this way they can increase their sensitivity to disability issues and be more effective counselors. Women with disabilities should be hired as program staff and administrators.
A point of debate is whether every shelter needs to be accessible or is it acceptable to establish a limited number of fully accessible shelters that serve only women with disabilities. One side of the argument is that one accessible shelter is better than none, which is the unfortunate reality for most communities. Also, the needs of women with disabilities would be met more effectively by a highly trained staff and a totally accessibility facility. The other side claims that segregated facilities create the perception that general programs are absolved of their responsibilities to accommodate women with disabilities. Further, the demand is so great that one program in a community could never meet the needs of abused women with disabilities seeking help.
Service providers often fail to recognize abusive situations, are silent when abuse is recognized, and are unable to refer abused individuals appropriately.
Anecdotal evidence indicates that providers of social services, including Social Security workers, human services workers, and rehabilitation counselors, do not generally believe that addressing the abuse-related needs of their clients is within their role or responsibility. The same can be said for physicians and the whole spectrum of health care workers. Information about abuse prevention and intervention, and the availability of community resources for battered women, was rarely included in the professional training for any of these disciplines. Service providers are often unaware of the degree to which abuse can interfere with their clients' achievement of program goals. In-service trainings are called for to enable service providers to increase their skills in discussing abuse with their clients and to establish an information base for referring their clients appropriately to community resources. Research is needed to identify the extent of this problem and to discover training techniques that would be the most effective.
Churches may be the first point of contact and first point of rejection for abused women with disabilities who are reaching out for help.
This statement by the Reverend Nancy Lane, Ph.D., an Episcopal priest who has cerebral palsy, (personal communication, Nov. 18, 1996), illustrates the desperation of many abused women with disabilities. Churches generally offer counseling and some social services to their members, but for women with disabilities, the effectiveness of these services is sometimes diminished by religious stereotypes about disability. In some religious traditions women are devalued and women with disabilities are devalued even more. Obedience and submission to the husband is expected. Disability may be associated with punishment for past deeds or sins of the family. Since many churches place a high value on the authority and integrity of the family, they are silent when issues of abuse come to their attention. Their preoccupation with the disability may obscure their recognition of abuse within the family. They may even convince women with disabilities who have been abused to remain silent and seek resolution of their problems through prayer.
Dr. Lane found that the literature on abuse of power by the clergy over women never mentions disability, and that the literature on church and disability never mentions abuse. She cites a fundamental need to change church attitudes toward disability before this problem can approach resolution. Policy declarations about recognizing and addressing the abuse of women, including women with disabilities, must be made from the highest levels of church hierarchies and implemented uniformly through the ranks of community congregations. Although churches are familiar with and refer to battered women's shelters, there is rarely such communication between churches and independent living centers and other disability advocacy organizations. The involvement of religious organizations in community coalitions and organized disability advocacy will increase the breadth of outreach. Churches are the first and main point of contact for many people in minority communities and individuals who are in no other way connected to service providing systems. Their role in abuse prevention and intervention could be invaluable.
Protective services are overwhelmed and often unresponsive.
Adult Protective Services in most states have a mandate to protect only those adults with disabilities who reside in institutional environments; adults living in the community have to be at least 65 years old to receive protective services. These services, while generally regarded as well intended, are compromised by limited funding and very large caseloads. The bureaucracy in place to administer protective services often further compromises effectiveness. Shortcuts in the bureaucracy are necessary in order to reduce the response time when police calls are received about women with disabilities who are in danger. A more investigative approach is necessary in order to identify feasible living alternatives for abuse victims. Field workers and program administrators should receive extensive training to increase their awareness and sensitivity to the vulnerabilities and realities of living with a broad range of physical, intellectual, mental, and sensory disabilities. Advocacy is needed to expand the mandate of these services to cover a larger age range and variety of living situations, as well as to increase the resources available for the delivery of services.
The lack of options for personal assistance forces dependence on abusive caregivers.
The dynamics of receiving personal assistance from a family member or unrelated, hired person are very complex. Persons with severe physical disabilities depend on another individual to assist them with intimate daily survival needs, such as toileting, bathing, dressing, transferring, and eating. It is very easy to abuse such individuals by assisting in a way that causes pain, threatening not to assist with essential tasks, or abandonment altogether. The National Study received numerous reports of women whose assistants withheld medication or refused to give them their orthotic devices, such as wheelchairs, crutches, or braces, until money, sex, or other favors were given. Opportunities are ample for voyeurism and contact with genitals when assistance with toileting and bathing is necessary. Other types of non contact abuse, such as stealing and extortion, are also made easy when the individual cannot directly control their possessions.
In some cases, emotional and physical violence is not deliberate. Family members may resent their responsibility to provide assistance, or may feel stress, fatigue, jealousy, or displaced anger due to dysfunctional family relationships. Paid assistance may, out of incompetence, insensitivity, or general carelessness, be rough or inattentive to special needs resulting from painful limbs or joints, vulnerability to skin breakdowns, lack of sensation, hypersensitivity, osteoporosis, or susceptibility to respiratory or other types of infections. In many cases, despite repeated efforts to train and reinforce correct behaviors, assistants are unable or unwilling to change.
Tolerating abuse in these situations may be the only way to survive. Many women with congenital disabilities have lived with family all of their lives and were raised to believe that no other living options were available to them. Women who depend on their spouses for personal assistance are told by their spouse that they must tolerate the abuse because no one else would ever marry them. The small percentage of women who have resources to hire assistants from outside the family sometimes develop a high tolerance for abuse because the alternative of finding new assistants is too daunting. Advertising, interviewing, running background checks, trial work periods are all very time consuming and physically and emotionally stressful. It is very difficult to fire an abusive assistant and pursue the course of finding another of better quality without some type of backup system from family, friends, or a reliable, affordable agency.
On the personal level, the solution to this problem is to develop a tight network of family and friends to check up on one's well-being and be available if emergency assistance is necessary. On the societal level, we must expand affordable and feasible options for providing high quality, reliable assistants. Plans for a national system for funding and providing long-term, respite, and emergency personal assistance services have been under discussion by the National Council on Independent Living, the Coalition of Citizens With Disabilities, the Administration for Developmental Disabilities, and the U.S. Department of Health and Human Services for decades; however, little progress has been made beyond local and statewide demonstration programs. National legislation with ample funding allocation is necessary before a uniform national system of services can be made available. Only then will women with disabilities have a feasible and attainable alternative to abuse as the price of survival.
Police have received little training in the special needs of women with disabilities.
Crime statistics make no record of disability. To do so would require police officers to be able to identify the wide variety of disabling conditions using only superficial information. This is an almost impossible challenge; however, some documentation is necessary before violence against women with disabilities will gain the attention it deserves. Standards for reporting should require some indication of functional limitations, such as mobility, sensory, or mental impairment.
Police officers, court justices, and other law enforcement staff should receive training in accommodations needed by persons with disabilities. Some progress has been made in increasing awareness of the needs of persons who have hearing impairments or developmental disabilities. Children should never be used as interpreters and nondisabled individuals should never be asked to speak in place of a disabled person who is capable of rendering the necessary information.
The courts have not proven friendly toward women with disabilities.
There is a tendency to order mediation, which forces women to confront their abusers and risk the possibility that the abuser will twist the facts to make her appear to be an abuser or harasser. When children are involved, there is a long and unfortunate tradition in the courts of judgments that the woman is not competent to serve as a mother solely on the basis of her disability. Solutions to these problems will come about when judges acknowledge the civil rights of women with disabilities and understand the principles of the Americans with Disabilities Act.
There is a serious lack of affordable legal services. Many women with disabilities do not see legal representation as an affordable option. The extraordinary expenses associated with living with a disability combined with the financial exploitation suffered by many women make the cost of legal services out of reach. There is a serious need to expand the amount of pro bono and low-cost services available to women with disabilities who are entitled to seek legal recourse to resolve cases of violence and long-term abuse.
Community services are not well integrated.
The array of needs experienced by women with disabilities is very complex. The fragmentation of social services and the lack of communication among community-based helping resources feeds the perception that no help is available and, therefore, abuse must be tolerated. According to Sharon Johnson, a rehabilitation counselor in Duluth, Minnesota, who deals often with abuse among her clients, the integration of social services is a key to providing women with disabilities alternatives to abusive living situations (personal communication, Nov. 14, 1996). She cites the following factors that contribute to the supportive environment in her community: (1) Protective orders are easy to get; (2) the police receive sensitivity training about disability issues; (3) the police know how to get interpreters quickly and easily; (4) perpetrators who are caught must go to "anger" management classes; (5) there are many high-quality battered women's programs; (6) service providers know about these programs and use them as resources for their clients; (7) there are crisis centers for children of battered women; ( 8) there is a county program that funds and refers individuals to serve as personal assistants; (9) there are various options for affordable housing, and (10) there is good communication among social service systems. Long term solutions to the problem of fragmentation depend on funding availability. In communities around the country, advocacy is needed to increase funding resources for disability-related social services, to encourage service providers to follow an integrated service model, and to train consumers on techniques to make the system work for them.
Based on excerpts from Nosek, M.A., Howland, C.A., Young, M.E. (1997). Abuse of Women with Disabilities: Policy Implications. Journal of Disabilities Policy Studies, 8 (1-2) 157-176.