Confronting the Sexual Abuse of Women with Disabilities
R. Amy Elman With contributions from Tiffany Lodholz
The immense and important research on the sexual abuse of women often ignores disability, and disability research rarely considers the sexual abuse of women with disabilities. Similarly, service providers and various advocates often fail to connect these crucial issues. For example, although legislation such as the 1990 Americans with Disabilities Act affirmed, “that disabled persons have been subjected to a history of purposeful unequal treatment … in our society,” it confronted neither the covert nor the sexual forms such purposeful mistreatment takes. Likewise, the Violence Against Women Act, adopted four years later, may have considered the gender-specificity of male violence against women but not the particular vulnerabilities of women with disabilities. In both instances, reformist efforts to politicize issues exclusively around either gender or disability are problematic for women with disabilities and for those engaged in feminist and disability politics.
Thinking about and organizing against the sexual abuse of women with disabilities renders gender a more explicit component of disability studies and activism. As well, it enriches feminist analyses of and activism against violence against women.
This document opens with a brief overview of the origins of our knowledge concerning the sexual abuse of women disabilities. It then considers the methodological quandaries related to sexual abuse research in general and the data on women with disabilities and the men that abuse them. Recognizing the obstacles and related gaps in our knowledge about the sexual abuse of women with disabilities may put us in a better position to both grasp the problem and pursue effective strategies for its prevention. I conclude with an exploration of the efforts of women with disabilities and their allies to counter sexual abuse. These include, but are not limited to, research, personal and group confrontation techniques, administrative remedies, and formal legal redress.
Activists affiliated with battered women’s shelters and rape crisis centers were among the first to successfully highlight the sexualized abuse of women (and children) with disabilities. In one of the first and most often cited accounts (between M ay of 1977 and December of 1979), feminists at the Seattle Rape Relief Center recorded over three hundred cases of sexual abuse against women and children with physical or cognitive disabilities. They noted that less than a third of these individuals made the decision to report their abuse to authorities (Lonsdale, 1990). After extrapolating statewide, the Center estimated that perhaps 30,000 such incidents occur annually in Washington (Bellone & Waxman, as cited in Fine & Asch, 1988).
That feminists, rather than authorities, came to learn of and play a crucial role in politicizing such abuse is hardly surprising. The routine anonymity within shelters and rape crisis centers enabled women to speak freely, without fear of retribution. In addition, unlike authorities that had a history of indifference to women’s suffering, shelter and rape crisis center staff established relatively favorable reputations within their communities. Because many of the staff within these settings had survived abuse themselves, they were unlikely to excuse or belittle reported abuse. Instead, they believed the women that came forward to tell them about it. Thus, like many survivors of abuse, those with disabilities are often better able to disclose the facts of what happened to them in these environments to advocates and researchers than to others, including “experts” within more conventional settings (e.g., hospitals and police stations).
While feminists within crisis settings were better positioned to underscore the pervasiveness of sexual abuse by decreasing the reluctance of survivors to disclose it, their relative inexperience with disability issues limited their ability to reckon with the unique vulnerabilities (both real and perceived) for abuse that occurs in disability-specific contexts (Nosek, Foley, Hughes, & Howland, 2001). This might include, for example, appreciating the difficulties in implementing an escape plan for a woman who depends on her abuser for assistance in executing personal tasks. As well, it might similarly entail frank discussions of how attendants manipulate such tasks to unwarrantedly intrude on and perpetrate “harmful genital practices” – like using a washcloth to rub a woman’s genitals until they are raw (Ramsey-Klawsnik, 2004, p. 94).
The disability community has shown that without disability specific discussions pertaining to, for example, assistance in bathing and getting dressed, feminists lack the potential to reveal abuse that might otherwise go undetected and, therefore, unresolved. Nonetheless, despite their shortcomings, activists (like those at the Seattle Rape Relief Center) helped forge the public’s recognition of what had previously been a private matter. In doing this, they established a crucial foundation that made future action oriented research possible.
Reading through sexhale abuse studies that address women with disabilities to determine the frequency (i.e., incidence and prevalence), character, and the consequence(s) of abuse can be daunting. This is not because there are so many studies, but because most employ such different sample populations, survey methods, definitions, terminology, and timeframes that determining the optimal and most appropriate response becomes nearly impossible. One must read between the lines to draw conclusions.
One of the first points to consider is this: Several sexual abuse studies may include women with disabilities among research subjects without necessarily being about women, gender, or the specificity of sexualized abuse and subordination (e.g., Sobsey & Doe, 1991). This is especially evident in research including children (e.g., Chamberlain, Rauh, Passer, McGrath, & Burket, 1984). Those sensitive to and concerned about women’s grievances falling below the threshold of public concern would be well advised to realize that, far from enhancing the authority of either group in adjudicating claims of sexual abuse, lumping together women with children may do both a disservice. After all, the consequences of abuse and the ways in which women and children are able to make sense of it often differ greatly. However unintentionally, overlooking this fact can be detrimental for those involved.
Second, women with disabilities comprise such a heterogeneous population that generalizations about their risk for sexual abuse can be tenuous. On the one hand, women with disabilities are diverse in age, race-ethnicity, class, gender identity, and sexuality. On the other hand, the variety of conditions considered a disability is wide and can include physical injuries, chronic disease, mental illness, and sensory and/or cognitive impairments – all of which may make a significant difference in the risks and forms of abuse women face. Consider an early study of women with a variety of disabilities (Doucette, 1986), which estimated this population to be one and a half times as likely to have been sexually abused as their counterparts without disabilities. When researchers focused instead on people with cognitive disabilities, they found rates of sexual victimization ranged from four to 10 times higher than for those without them (Baladerian, 1991; Valenti-Hein & Schwartz, 1993).
Abuse rates appear to plummet when researchers restrict their survey population to women with physical disabilities (Young, Nosek, Howland, Chanpong, & Rintala, 1997) . After asking both women with physical disabilities and those without them whether they had ever experienced emotional, physical, or sexual abuse, scholars found no significant difference in sexual abuse rates between women with disabilities (39.9%) and their peers (37.1%). A similar proportion of women with physical disabilities compared to women without physical disabilities reported emotional abuse (51.7% vs. 47.5%) and physical abuse (35.5% vs. 35.6%) (Young et al., 1997, pp. S34-36). Nonetheless, these researchers did discover that women with disabilities experienced physical or sexual abuse for longer durations than those without disabilities (i.e., 3.9 years as opposed to 2.5 years). They were only able to discern this because these scholars had designed the study so that women with disabilities could indicate whether the abuse they experienced directly related to their disability (e.g., withholding equipment, medications, transportation and personal care).
In an effort to accommodate the crucial distinctions among women with disabilities while acknowledging key similarities, t he literature primarily focuses on one of two broad categories, “physical disabilities” and those that are “developmental” (i.e., cognitive impairments beginning before age 22 and resulting from brain injuries, mental retardation, or mental illness) . Whatever the shortcomings associated with this dichotomous scheme, a cursory review of the research appears to confirm its usefulness. After reviewing numerous such studies, Stimpson and Best (1991) suggest that more than 70% of women with a wide variety of disabilities have been victims of violent sexual encounters at some time in their lives .
A growing number of activists are aware that perpetrators of sexual abuse may be especially keen to exploit women with cognitive disabilities because abusers perceive these women as those that will not tell or will not be believed. Researchers note that, in contrast to the varied characteristics of different types of physical disabilities, those that are cognitive (i.e., limited learning behavior, limited social skills, limited understanding of social cueing, limited intellect) can interfere with procedures of investigation and criminal prosecution (Cole, 1991; Valenti-Hein & Schwartz, 1993).
Finally, one of the most persistent and least discussed complications for researchers and others is our own inability to agree on what we mean by “sexual abuse” and how best to characterize those that perpetrate it, to say little of our insensitivities to the consequences of this shortcoming. Some researchers define sexual abuse comprehensively, including a wide range of physical and verbal behavior (e.g., sexual harassment and obscene phone calls) often perpetrated by known assailants. They are apt to discover higher rates of abuse than those that define it narrowly, within a context of overt and severe criminal sexual assault by strangers (e.g., rape). However, because most women – not least those with disabilities – are especially reluctant to describe any coerced sexual experience with men they know as abusive, determining the full extent of sexual abuse via crime statistics, reports by victims/survivors, or anecdote remains a challenge (Russell, 1983; Koss, 1993). Alternatively stated, underreporting seriously undermines efforts to estimate the prevalence of sexual abuse.
Additional time and research are needed to explore the particular struggles and vulnerabilities that women with disabilities confront in their own efforts to end sexual abuse. These include, but are not limited to, stereotypes of passivity, frequent lack of privacy, the physical difficulties associated with escaping sexual abuse, and higher rates of exposure to institutional facilities where mistreatment is notoriously rampant and thus normalized. Moreover, “disabled women, in greater numbers than disabled men, have been incarcerated in prisons, hospitals, nursing homes and a multitude of institutions” (Meekosha, 1998, pp. 177-178). Few studies have been done to ascertain the incidence of sexual abuse in institutions, however the high incidence of abuse by service providers combined with anecdotal information points to “the probability that institutional sexual abuse is a significant problem” (Crossmaker, 1991, p. 205). As well, many women themselves appear to accept their abuse as “normal,” particularly within intimate contexts of repeated violation.
Nosek and her colleagues at the Center for Research on Women with Disabilities propose that researchers and service providers employ disability sensitive queries that explicitly request detailed information about a woman’s treatment or lack thereof and if it has lead to humiliation or injury ( Nosek et al., 2001 ). Noting the subtleties of disability-specific sexual abuse is crucial. For example, “A woman with a spinal cord injury whose attendant fondles her while helping her get dressed may not consider that being forced into sexual activity and may not label it as sexual abuse” (Nosek et al, 2001, p. 186). In the end, an attendant’s intentions and behavior and the judgment(s) that we render about them (e.g., our understanding that he is motivated by control and a sense of entitlement) matter less than whether we are sensitive to the potentially injurious consequences that the recipient experiences.
Although most women with disabilities live independently, one cannot ignore the greater reliance of women with disabilities on others for care and their fear that reporting abusive providers and companions might trigger the end of a relationship and loss of essential care. As with many abused women, those with disabilities face the untenable position of having to choose between “protecting their lovers and husbands from incarceration or protecting themselves by relying on a criminal justice system that is unresponsive to their individual needs” (Mills, 2003, p. 25). Healthcare providers face a similar conundrum when tending to abused women. Since 1998, several states adopted laws requiring mandatory reporting from practitioners that suspect that their patient’s injuries may have resulted from abuse. Fearing the retribution against women that can result from such reporting, these professionals may worry whether they should issue a formal complaint (Mills, 2003). The issue of women’s relationships with caregivers and abusers raises the question of research about perpetrators.
Disability researchers continue to operate from varied conceptions of what sexual abuse is, but the data leave little doubt that the overwhelming majority of perpetrators are male caregivers, a significant portion of whom are paid service providers who commit their crimes in disability service settings (ca. 44% found in Sobsey & Doe, 1991). Male family members are the second largest perpetrator group (see Sobsey, 1994, Table 2a, p. 76) and only a miniscule percentage of abusers are strangers (ca. 3% in Furey, 1994 and 6% in Sobsey, 1994, Table 2a, p. 76 ).
Even when researchers in one study concluded, “Male strangers were the most often cited perpetrators of sexual abuse” (Young et al. , 1997, pp. S-36), their own data did not substantiate the finding (see Table 2, pp. S-37). Closer inspection of the published data table reveals that while strangers comprised 10.5% of those that sexually abused women with disabilities, a tally of the numerous other categories of assailants (e.g., husbands 8% and dating partners 8.9% alone) reveals that the percentage of known assailants surpass those identified as strangers. The same table also shows that fathers (4.1%), brothers (6.2%) and “other family members” (6.8%) combined surpass the percentage of strangers (10.5%). T his particular example further demonstrates the earlier point about the comparability of data and the need to interpret them with care. In this instance, researchers had so disaggregated the assailants that it seemed “strangers” posed the greatest harm to women although they did not. Unfortunately, this claim has since been repeated in other venues (e.g., Nosek & Howland, 1998, p. 2).
That people with disabilities are, like those without disabilities , most at risk for abuse from individuals they know and on whom they rely for personal care, typically complicates their ability to report abuse or level formal charges against those who abuse them. Some abusers may be so controlling that those they victimize have no way to disclose the abuse. For example, abusers may insist on always attending all meetings and discussions such that the women in their “care” have no opportunity to discuss the abuse. Service providers might mistake the persistent presence of these men with genuine concern, remaining unaware of the relationship’s horrendous dynamics. Moreover, for women with the chance to report and the knowledge of where best to make their grievances, disclosing the abuse does not ensure that they will be believed. Decreasing the risk for abuse among women with disabilities requires, among other actions, countering social cynicism.
Consider Traci whose husband began beating her when she was pregnant with her first child. She recalls that one of the primary reasons that she did not leave him sooner was because she did not feel that she could manage on her own. Moreover, she feared that no one would believe that her husband abused her. Traci was well aware of the veil of privacy and the assumption of benevolence that cloaks marriage and men’s power to abuse women within it. Indeed, her ex-husband’s attorney was able to exploit this assumption when he made her disability the major focus of his client’s defense. She explains, “I was made to feel as if I was the one at fault and my disability explained why I was beaten. My husband’s lawyer held up a picture of a naked woman , her body twisted and misshapen, and said, isn’t this the type of disease you have? Isn’t this what you look like?” In addition to this sexual taunt, the lawyer also suggested that Traci’s broken bones and bruises were due to her use of steroid medications (Center for Research on Women With Disabilities, 2004, ¶5, emphasis added). Acknowledging that these tactics constitute sexual harassment and are among many strategies that perpetrators and their defenders will use in order to escape the allegations made against them helps diminish the effectiveness of such stonewalling.
Perpetrators of sexual abuse are far more calculating than we may realize (see Scully & Marolla, 1993), a point evidenced in diverse media ranging from news articles detailing their public boastings (e.g., Nieves, 2000, p. A20) to seemingly innocuous adolescent “humor” magazines. The latter offers explicit counsel to young men on sexuality. In one, the publisher tells readers that they can sexually abuse the individuals with mental retardation with impunity precisely because such victims are rarely believed (see Elman, 1997, p. 259). This particular example underscores an alarming fact, noted earlier. Perpetrators frequently select their victims for their perceived powerlessness and vulnerability – and for their seeming limitations. Consider Bruce Allen Young, a registered nurse, found guilty of raping a sedated 15-year-old girl in a hospital recovery room (“Nurse Pleads Guilty,” 1995). He stated that he had chosen her because she was “helpless” (“Scores of Florida Women,” 1994). Sex offenders may similarly assume that women who are deaf will not be able to call for help or report their abuse. They may also believe that women who are blind will be unable to identify them and defend themselves. These assumptions need not be accurate to be powerful.
If to be forewarned is to be forearmed, then prevention requires nothing less than a candid and on-going acknowledgment of risks. Yet, as Hwang notes, “Warnings about possible problems should be realistic – but not overwhelming – and, whenever possible, the focus should be on solutions, not problems” (1997, p. 129). The following section is written with this in mind. It first addresses several key disability-specific issues for women in countering sexual abuse and posits some possible solutions.
Tracking Perpetrators. First, let us consider the source of the problem by focusing on the perpetrators of sexual abuse and noting that even when they are not the “intimates” of the women they abuse, abusers are rarely “strangers”. Like women in general, those with disabilities are most at risk for abuse from men they know. However, because women with disabilities generally have more contact with men in the so-called caring or healing sectors of the economy (i.e., everyone from physicians and psychiatrists to orderlies and volunteers), the number of people on whom they rely for physical care, emotional and moral support, and companionship, is often high – which increases their potential exposure to abusers.
Data demonstrate that many of the places where women with disabilities are supposed to feel most safe may often be those where they may have to be on guard. In a pornographic magazine dedicated exclusively to women amputees entitled Amputee Times , men request that a national register of addresses be compiled of “attractive amputees” (Elman, 1997, p. 266-267). They also offer instructions to one another on where best to gain access to women with disabilities, including rehabilitation centers, hospitals, and orthopedic supply stores. Many, like pornographers more generally, have moved to the Internet as a preferred venue for such exchanges (Hughes, 1999, for more conversation, see amputee-online.com). This information is certainly troubling but the Internet can also serve as an important organizing tool to rescind the security and sense of entitlement that perpetrators may feel they have.
Just as perpetrators list potential places and practices that facilitate sexual exploitation of women with disabilities, many activists are increasingly tracking perpetrators (e.g., via governmental websites listing those charged with criminal sexual assault). Moreover, women with disabilities are sharing information with one another to avoid potential dangers. They are doing this through national conferences like the 2003 Women with Disabilities and Allies Forum, an event cosponsored by The National Organization for Women Foundation and the American Association of People with Disabilities. Women with disabilities are also supporting one another through numerous websites like Disabled Women on the Web ( http://www.disabilityhistory.org/dwa/ ) and in community newsletters (e.g., Dykes, Disability, and Stuff and Disability Rag ) .
Improving Service Provision. Second, if as decades of research consistently reveals, men sexually abuse women with disabilities at a similar or more frequent rate than women without disabilities, professionals can better respond to abused women in general (and those with disabilities more specifically) by committing to services and outreach that directly address women with disabilities. For example, this could entail the design of examination tables and gynecological instruments that privilege the patient’s comfort over that of medical professionals. In the end, this might facilitate faster and more accurate physical examinations and improved healthcare for all.
It is worth noting that disabled women and girls may be especially reluctant to report or in any other way seek intervention fearing that contact with various state and medical authorities may only exacerbate the annoyances they already endure from these systems. That noted, additional obstacles abound for women with disabilities, making it particularly difficult for them to access assistance in ending sexual abuse. These can include the absence of accessible reporting devices (e.g. TTY’s), assistance personnel (e.g., interpreters for the deaf), comfortable examination devices, and community spaces that are architecturally accessible.
As key recipients of service provision, many women with disabilities are likely to be those best able to design and assess quality care. For this reason, they must play a major role in, among other matters, the screening of potential volunteers and employees and they should remain involved in the ongoing reviews of personnel within service settings.
Reflective Research. This article has thus far noted that while studies pertaining to the sexual abuse of women with disabilities are important, they have numerous shortcomings. Chief among them and one not yet noted is that most research has emphasized estimating the prevalence of sexual abuse and extended significantly much less attention to the impact of that abuse on survivors. A focus on prevalence requires quantitative methods, which typically preclude fine-grained accounts of women’s experiences, an emphasis that may therefore unintentionally perpetuate the very invisibility and silence that many women with disabilities have been working to overcome.
The importance of studies should be neither overstated nor dismissed; instead, research should complement the insights of survivors themselves. The incorporation of several unmediated and on-going exchanges is one possibility (e.g., Gilson, Cramer, & DePoy, 2001). One can find such conversations within the pages of community papers and disability oriented websites mentioned above. Just as women with disabilities are in an important position to assess the quality of their own care, they can play a key role in the production and assessment of research – and other educational efforts.
Creative Public Information Campaigns. Public information campaigns pertaining to sexual abuse need to reflect the findings of research on the sexual abuse of women with disabilities because this population experiences such high rates of sexual abuse. One of the best ways to offer a realistic acknowledgement of risks without overwhelming people is to emphasize pro-active measures in such campaigns. Sex education can be one such component. Although sex education classes have long been used to offer and encourage conversation and respect for people’s choices around sex, such courses have tended to transpire in venues less accessible to those with disabilities (e.g., in physical education settings). Moreover, the lack of information on sexuality and women with disabilities makes such discussions more difficult. It is therefore especially important to pay close attention to what women from within the disability community want. Self-determination must be more than a rhetorical claim, it must apply in pragmatic ways and sex education is one key venue.
Confrontational strategies can complement public awareness and sex education campaigns. This involves, among other things, naming abusive behavior directly and demanding that it stop. Imagine Zero Tolerance Campaigns focused on ending sexual abuse that is disability-specific. Though this may seem either a simple or a Herculean task, the point is that it is especially powerful because it is so unexpected and it provides a concrete example of cultural resistance.
Unconventional Empowering Measures. Confrontation can (but need not) be a solitary form of engagement that can enhance women’s assertiveness and confidence. Langelan, who is a self-defense instructor and former president of the D.C. Rape Crisis Center, discusses the importance of group confrontation, especially as a means of preventing retaliation. Male power is very real and while confrontation may not guarantee a woman’s safety, attempts to tolerate abuse have not worked. For a look into how and when these strategies have succeeded, I suggest Langelan’s (1993) Back Off: How to Confront and Stop Sexual Harassers . In addition, there is De Becker’s The Gift of Fear (1998), which emphasizes our capacity to predict when we are in the presence of danger so that we can better avoid it. Although neither work offers disability-specific insights, the pro-active measures both books describe may be particularly effective when it comes to coping with and escaping from sexual abuse in its more insidious forms.
Legal and Administrative Measures. Activists and others must work together to diminish even the appearance of indifference as sexual abusers can interpret apparent indifference as permissiveness. For example, the refusal of some states to maintain consistent crime statistics for people with disabilities sends a powerful and wrong message. So too does the U.S. National Hate Crimes Statistics Act of 1990 (HCSA), which mandated the monitoring of hate crimes nationally, but excluded crimes against women (Pendo, 1994) and failed to include the disability community as a group at risk (Waxman, 1991). Four years later, it appeared that the Violent Crime Control and Law Enforcement Act addressed this omission when it expanded HCSA coverage by requiring the FBI to report on crimes based on disability. However, the fact that the 1994 act extends only to those attacks that occur in national parks and other federal settings limits its impact. It remains practically impossible for the authorities to intervene in crimes motivated by such bias where states have not already developed their own initiatives to pursue prosecution. Thus, federal involvement is far more restricted than it might otherwise appear. U.S. indifference parallels international neglect; the International Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW) does not forcefully address the particular needs of women with disabilities, recent discussions of disability notwithstanding.
The implication here is not a call for mandatory reporting and a full embrace of the law, but rather a call for attention to the fact that context, public perception, and an appearance of official indifference matter. The consequences of the persistent disregard on the part of authorities to women with disabilities are tangible and self-perpetuating. When little outreach is done on the part of service providers to connect with women with disabilities it sends a powerful message that those in a position to provide redress are so disinterested and unreliable that one would be foolish to come forward in seeking assistance.
Conclusion and Current Sources
The erroneous assumption that women with disabilities are asexual has not freed them from sexual abuse. For nearly three decades, feminists and disability activists have generated knowledge about and public outrage against sexual abuse. It now seems support has increased for women with disabilities. In consequence, they are better positioned to both perceive assaults and pursue efforts to end them. This trend is perhaps most evident in important and empowering legal precedent (in Valenti-Hein & Schwartz, 1993, pp. 292-293) that validates the competency of abuse victims with cognitive disabilities to testify against their assailants. However, it is also perhaps most clearly manifest in the emergence of disability studies and the growing number of conferences, organizations, working papers, and events designed to raise public awareness and confront the problem of sexual abuse.
The fact that many of these consciousness raising and community projects are available through the web, suggests the depth of public involvement and a commitment to maintaining accessible resources. In addition, it suggests a shift in awareness and the growing recognition that sexual abuse is not an isolated problem but a central social problem of epidemic proportions affecting, not least, women with disabilities.
While it is impossible to provide an exhaustive list of electronic resources, several are especially noteworthy and this article closes by drawing your attention to them. All five offer a foundation for basic understanding and further inquiry.
- The Georgia Public Health Training Network (PHTN) offers a power-point presentation entitled Sexual Assault Against Persons Living with Disabilities . This simple overview well illustrates the creative outreach projects that proliferate the web ( http://www.phppo.cdc.gov/PHTN/svprev/Disability.pdf ).
- The Wisconsin Coalition Against Sexual Assault (WCASA) posts a concise though thorough information sheet, People with Disabilities and Sexual Assault through its website ( http://www.wcasa.org/resources/factsheets/disabfact.html ).
- The Michigan Resource Center on Domestic and Sexual Violence provides a general bibliography that covers several useful resources ( http://www.mcadsv.org/mrcdsv/ ).
- For the research oriented, there is Disability Studies Online http://www.disabilitystudies.com/ and the Society for Disability Studies (links) — http://www.uic.ed u /orgs/sds/links.html . While neither of these last sites is women-specific, they do provide links to numerous up-dated, relevant ones.
Author of this document:
R. Amy Elman, Ph. D.
Department of Political Science
1200 Academy Street
Kalamazoo, MI 49006