Abused Women with Disabilities
The emotional, physical, and sexual abuse of women with disabilities is a problem of crisis proportions.
Women with disabilities face unique vulnerabilities beyond those experienced by women in general: Caregivers assisting in a way that causes pain, threatening not to help with essential tasks, or withholding medication, wheelchairs, and other orthotic devices until money, sex, or other favors are given; abandonment; voyeurism and contact with genitals during hygiene tasks; stealing; and extortion. Tolerating such abuse may be the only way for some women with disabilities to survive.
Dr. Margaret Nosek is executive director, Center for Research on Women with Disabilities (CROWD), and professor in the Department of Physical Medicine and Rehabilitation at Baylor College of Medicine in Houston. She was principal investigator, and Rosemary B. Hughes, PhD, was project director, of an investigation that resulted in “Violence Against Women With Disabilities: Fact Sheet #1—Findings from Studies 1992–2002.” On CROWD’s Web site (www.bcm.edu/crowd), Dr. Nosek describes how it came about:
“When we embarked on our initial study of women with physical disabilities in 1992, we intended to explore sexuality in its full range of meaning and experience. One of our advisors, Dr. Sandra Cole at the University of Michigan, strongly urged us to include in this study questions about abuse. To our great surprise, a very high rate of abuse emerged as one of the most prominent findings of the whole study. Nearly two thirds of the participants with disabilities and those without had experienced emotional, physical, or sexual abuse at some time in their lives. We took this finding as a mandate from the more than 1,000 women who participated in the study to delve deeper into the causes of and solutions to this problem.
“In listening to the stories of the women with disabilities in our study, we began to understand that there are at least three aspects to the problem of abuse. First and foremost, it is a very personal problem of the woman as an individual. Her abilities to recognize her experiences as abusive, seek help, protect herself, remove herself from the abusive situation, or discover some other way to resolve the abuse are all very much affected by her disability and the limitations imposed by barriers in her environment.
“Second is the role of disability-related service providers. In the broad spectrum of social, vocational, and medical services available to women with disabilities, abuse is rarely detected or addressed. Third is the availability of services from battered-women’s programs, which only recently have begun to appreciate the importance of making all their services and facilities accessible to women with all types of disabilities. ”Dr. Nosek subsequently prepared “Violence Against Women With Disabilities: Fact Sheet#2—Issues and Recommendations.
” Since this fact sheet was compiled, a few research project shave developed tools to improve screening for abuse and to educate law enforcement personnel about these issues. One of these investigators is Rosemary B. Hughes, PhD, who says, “My colleagues in Portland and I have conducted some recent qualitative but unpublished research on the perspectives of law enforcement related to crime victims with disabilities. I am currently conducting/involved with several studies on violence against men and women with disabilities. ”Dr. Hughes is senior research scientist at the Rural Institute: Center for Excellence in Disability Education, Research and Service as well as research associate professor, Department of Psychology, University of Montana (Missoula). Sheand Laurie E. Powers, PhD, and Emily M. Lund, with contributions by Mary Wambach, wrote “Interpersonal Violence and Women With Disabilities: A Research Update” (September 2009). Excerpts from this paper are in the sidebar “A Research Update,” p. 47).
Dr. Nosek says, “All the problems outlined in Fact Sheet #2 are still current. There has been little improvement in the situation of abused women with disabilities.” The document cites 7 issues and 14 recommendations, as noted in the following text.
It’s a Fact
Two key factors may contribute to the tendency for [women with disabilities] to be subjected to abuse for significantly longer periods of time than most women:
- The perceived and real lack of options for escape and for receiving assistance from programs for battered-women and other abuse-relief services.
- The general inability of disability-related service providers to identify those who are in abusive situations and refer them appropriately.
Issue #1: Programs Have Barriers
For women who are in life-threatening abusive situations, crisis intervention includes escaping temporarily to a women’s shelter or permanently from the abuser, and having a plan ready in the event of imminent violence if the woman chooses to remain with the perpetrator. These options may be problematic for women with a disability if:
- The shelter is inaccessible or unable to meet her needs for personal assistance with activities of daily living.
- There is no accessible transportation to the facility.
- The shelter staff are unable to communicate with a deaf or speech-impaired woman.
- She depends primarily on the abuser for assistance with personal needs and has no family or friends to stay with.
- 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.
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 a 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, via a personal communication dated November 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 (ADA), 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 must be accessible. Is it acceptable to establish a limited number of fully accessible facilities 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 accessible facility.
The other side claims 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 those seeking help.
Issue #2: Service-Provider Failures
Anecdotal evidence indicates that providers of social services—including Social Security workers, human services workers, and rehabilitation counselors—do not generally believe 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 healthcare 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.
Issue #3: Religious Facilities Fail
“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 (in a personal communication dated November 18, 1996) by the Reverend Nancy Lane, PhD, an Episcopal priest who has cerebral palsy, 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 those 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 literature on abuse of power by the clergy over women never mentions disability, and 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, such communication between churches and independent living centers and other disability advocacy organizations is rare. Religious organizations’ involvement 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.
Issue #4: Overwhelmed or Unresponsive Protective Services
Adult Protective Services programs in most states have a mandate to protect only those adults with disabilities who reside in institutional environments; those living in the community must be at least 65 years old to receive protective services.
While generally regarded as well intended, these services are compromised by limited funding and very large case loads. The bureaucracy in place to administer them 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 there sources available for the delivery of services.
Issue #5: Lack of Options for Personal Assistance
The dynamics of receiving personal assistance from a family member or unrelated, hired person are very complex. People 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 easy to abuse them 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 noncontact abuse, such as stealing and extortion, are also made easy when individuals 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 displace danger 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 their lives and were raised to believe 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, and trial work periods are time consuming and physically and emotionally stressful. It is 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 our 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 for decades 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.
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 is available. Only then will women with disabilities have a feasible and attainable alternative to abuse as the price of survival.
Issue #6: Undertrained Law Enforcement Personnel
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 people with disabilities. Some progress has been made in increasing awareness of the needs of individuals who have hearing impairments or developmental disabilities. Children should never be used as interpreters, and able-bodied 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 a woman to confront her abuser 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 ADA.
Issue #7: 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 financial exploitation 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.
Issue #8: Lack of Integration of Community Services
The array of needs experienced by women with disabilities is complex. The fragmentation of social services and the lack of communication among community-based resources feed the perception that no help is available and, there fore, abuse must be tolerated. In a personal communication (November14, 1996), Sharon Johnson, a rehabilitation counselor in Duluth who deals often with abuse among her clients, says the integration of social services is a key to providing women with disabilities alternatives to abusive living situations.
She cites the following factors that contribute to the supportive environment in her community:
(1) Protective orders are easy to get.
(2) Police receive sensitivity training about disability issues.
(3) 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.
(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.
We offer the following recommendations for increasing the accessibility and availability of battered-women’s services for women with disabilities:
- Modify shelters for battered women so they are fully accessible, including barrier-free access to sleeping rooms and common areas, architectural features that comply with ADA, visual and auditory alarm systems, available interpreters, and TTYs for telephone communication.
- Ensure that all services offered by battered women’s programs are fully accessible and integrated for women with disabilities, including hotlines, individual counseling, and support groups.
- Provide or refer legal assistance for obtaining restraining orders and managing court systems.
- Keep statistics on the number of women with disabilities who call crisis hot lines or use other program services.
- Assist and encourage police in recording disability status in their crime reports, as well as encouraging adoption of a separate category for perpetrators who are caregivers.
- Train staff on how to communicate with people who have hearing, cognitive, speech, or psychiatric impairments. Staff should understand environmental barriers faced by women with physical and sensory disabilities when offering advice or referrals for obtaining shelter.
- Have on hand an extensive network of community referrals and contact numbers, including volunteers or other community resources for obtaining personal assistance.
- Offer training to disability-related service providers, including independent living centers and churches, on recognizing the symptoms of abuse and the characteristics of potential batterers. Service providers should be familiar with and able to refer to resources for battered women in their community.
We further offer the following recommendations for social service providers (such as rehabilitation counselors, social workers, ministers, case managers, and people working in medical settings) who may have contact with women with disabilities:
(1) Seek out information about how to recognize the signs and symptoms of abuse. Suggest that in-service training on this topic be offered for staff of your organization.
(2) Incorporate into your work the practice of talking with clients directly and privately about the suspected abuse. Assess the degree of danger they may be experiencing. For situations of extreme danger, contact the police and Adult Protective Services.
(3) Help clients suspected of being in abusive situations to develop a safety plan they could follow to escape their situation should it become life threatening, including identifying accessible emergency shelter, transportation, supplies, medication, cash, and keys.
(4) Document in the client’s record your observations and discussions about abuse, including your suspicions of abuse
(5) Plan for follow up to discuss the abusive situation.
(6) Give clients information on resources that could help them deal with abuse, including phone numbers for the local program for battered women, family violence division of the local police department, and a legal-services organization.
Solving the problem of violence against women with disabilities will require the involvement of segments of the community that have not traditionally been active in efforts to reduce domestic violence. It is essential that networks of communication be established among those working in the battered women’s movement, the disability-rights movement, disability service organizations, legal defense organizations, law enforcement, religious organizations, and health care.
In this way we can expand the awareness and understanding of the critical importance of removing the barriers that face women with disabilities who are trying to remove violence from their lives.
This article is based on “Violence Against Women with Disabilities: Fact Sheet #2—Issues and Recommendations,” posted onwww.bcm.edu/crowd, and is used by permission.
Contact: Center for Research on Women with Disabilities, One Baylor Plaza, Houston, TX. 77030. Phone: 800-443-7693 (toll-free) / 713-798-5782 / 798-4688 (fax).
If you are in danger, call:
- The National Domestic Violence Hotline 800-799-SAFE.
- The Rape, Abuse, and Incest National Network (RAINN) Hotline 800-656-HOPE.
- The National Teen Dating Abuse Helpline 866-331-9474
A Research Update
by Rosemary B. Hughes, PhD; Laurie Powers, PhD; and Emily M. Lund
A small but ever-growing body of literature addresses ways to reduce the risk for and experience of interpersonal violence (IPV) among Disabled and Deaf women [capitalized to indicate a minority group]. Women living with disability face not only traditional and disability specific forms of abuse but also unique barriers to leaving and reporting abusive situations such as mobility and accessibility barriers, fear of losing their independence, and dependence on the perpetrator for assistance with daily-life activities.
Because research on the prevalence and nature of violence against Disabled women was not initiated until the late twentieth century, investigation of the benefits of safety-promoting interventions is in its infancy. Research conducted to date or currently underway highlights improvements in Disabled women’s abuse awareness and knowledge, safety planning, safety planning self-efficacy, safety skills, safety-promoting behaviors, and social networks.
Notable gaps exist in the research related to the issues and needs of ethnic or racial minority survivors, and/or survivors who are gay, lesbian, bisexual, or transgender. Numerous methodological issues must be considered when conducting research with Disabled and Deaf women. Interpretation of the growing body of research is particularly complex due to the diverse definitions of disability and IPV applied across studies and the different methods used for participant identification and recruitment. Researchers need to understand that telephone-based surveys and surveys of people who receive disability-related government services may exclude certain segments of the disability community.
In addition to these methodological considerations, we stress the importance of involving people with disabilities in all phases of research, from designing studies to disseminating the findings. We call for continuing advancement of legislation and policies; acceleration of efforts to provide response and accessible services, and disability-specific violence training for professionals; and attention to the issue of violence against men with disabilities.
Source: Powers, L. E., Hughes, R. B., & Lund, E. M. (2009, September). Interpersonal Violence and Women With Disabilites: A Research Update. Harrisburg, PA: VAW net, a project of the National Resource Center on Domestic Violence/Pennsylvania Coalition Against Domestic Violence. Retrieved from www.vawnet.org.
Excerpted by permission.
Help from VA
Did you know that April was Sexual Assault Awareness Month? About one in five women and one in a hundred men seen in VA medical facilities report they have received military sexual trauma (MST)—sexual assault or repeated, threatening sexual harassment during military service. MST can affect veterans’ physical and mental health many years after the event.
VA offers a variety of services designed to assist veterans who have experienced MST. For example, treatment for physical and mental-health conditions related to MST is available at every VA facility and is provided free of charge, regardless of service-connection status. Veterans can receive this free care even if they aren’t eligible for other VA care. Every VA facility also has an MST coordinator, who serves as a point of contact for veterans and staff. It’s important to remember, however, that every VA employee has the power to help vets recover from MST by responding sensitively to inquiries about MST, remaining knowledgeable about VA’s MST-related services, and ensuring that information is kept confidential.
Abused Women with Disabilities
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