Anatomy, Autonomy and Abuse: An Analysis of the Abuse of Physically Disabled Women
Abuse, a complex phenomenon, arises largely from power imbalances and is perpetuated by certain behavioral and situational trends, including isolation, blame, and dependence. In particular, the abuse of women by men is a problem of enormous proportions. Likewise, people with disabilities have been disadvantaged at every turn in social and political systems and often in personal relationships. They have been subjected to social inequality, denied their rights, and suffered physical and sexual abuse.
Julia “Juju” Lan ’17’s research reveals how the correlating factors of gender-based abuse and the lives of women with physical disabilities compound to prolong the abuse of these women. Her presentation will allow us to gain a more thorough understanding of abuse and gender-based violence as well as the preventative actions required.
Faculty Advisor: Donald Slater, Instructor in History and Social Science
People with disabilities have been disadvantaged at every turn in social and political systems and, as this paper will demonstrate, in personal relationships. As Grue and Sherry assert, “Most of history has been unkind to people with disabilities. Society’s response to [them] has vacillated from benign neglect to extreme abuse” (Grue and Sherry 60). While this abuse has often manifested itself in the denial of rights to disabled people, there has also been abuse in a physical sense. Abuse in general has been defined as any “act of aggression and hostility… that affects the victim physically, psychologically, and socially” (Milberger et al. 6). Physical and sexual abuse as general phenomena are very complex, arising from power imbalances, and abuse is perpetuated by certain behavioral and situational trends, including isolation, blame, and dependence (“The Duluth Model”; “Why do Abuse Victims Stay?”). Yet the abuse of people with disabilities is even more complex, as the concept and the social construction of disability present many complications and “interacting factors” (Sobsey et al. x).
This paper is centered on the physical and sexual abuse of women with solely physical disabilities, in their late teens to middle age, when men are the abusers. This analysis focuses specifically on physically disabled women because the abuse of these women is comparable in many ways to the abuse of non-disabled women, and this close comparison allows for the examination of subtleties (Elman and Lodholz). As such, the systemic and historical social oppression and disadvantage of women with physical disabilities correlates with the behavioral and situational trends of gender-based abuse of women by men in the United States. Women with physical disabilities have less agency or control over their lives, especially in clinical settings; they are more socially isolated; they are more dependent; they may perceive that they are to blame for their disability and the resulting dependency, as was emphasized throughout history; and they have fewer alternatives and resources than do non-disabled women, in order to escape abuse.
Studies have displayed that the abuse of physically disabled women lasts longer than the abuse of non-disabled women — for example, responses collected from a national sexuality survey revealed that women with physical disabilities who were abused experienced abuse for an average of 7.4 years, while non-disabled women who were abused experienced an average of 5.6 years (Young et al. 36-7). As such, these physically disabled women experienced abuse for 32% longer than those who were not disabled. This paper will reveal how the correlating factors of gender-based abuse and the lives of physically disabled women — these factors being issues of agency and control, social isolation, dependency, perceptions of blame, and a lack of resources — compound upon one another to prolong the abuse of women with physical disabilities. This analysis reaches the conclusion that, in addition to certain systemic and procedural changes, increased personal, economic, social, and civic participation (Chan, Da Silva Cardozo, and Chronister 43) for physically disabled women would work to combat abuse, giving more choice and control, access and opportunities, social connection and inclusion, to name a few, to these women. And, by studying the abuse of disabled people, we may gain a more thorough understanding of the larger phenomenon of abuse (Sobsey et al. x) and the actions required to stop and prevent it.
What is disability?
The concept of disability is extremely complex, and its varied definitions are instrumental in the lives of people with disabilities. When disability is socially defined in a negative way, the psychology of people with disabilities and their chances of “full inclusion” in society will be harmed (Chan, Da Silva Cardozo, and Chronister 23). Likewise, the words used to describe disability are powerful. Because words function to express our thoughts or to cause someone else to think something, words can manipulate one’s understanding or misrepresent a concept (Russell 268-271). For example, the words “impairment, disability, and handicap” might be used in place of “function, activity, and participation,” creating a more negative connotation around the notion of disability (Chan, Da Silva Cardozo, and Chronister 30). We will see how the ingrained stigma of disability, as a concept and in its presentation, acts as an obstacle to the empowerment of people with disabilities.
From a legal viewpoint, disability is assessed in terms of impairment and function. The ‘Americans with Disabilities Act of 1990’ defines a person’s disability as “a physical or mental impairment that substantially limits one or more of the major life activities of such individual; a record of such an impairment; or being regarded as having such an impairment” (“Americans with Disabilities Act”). Impairment, though, is largely rooted in the ways that a person’s body differs from the norm (as related to an underlying pathology) (Chan, Da Silva Cardozo, and Chronister 25).
The idea of normality is crucial in any study of disability. Grue and Sherry state that “disability is never constructed without reference to something else–usually normality, or normality thinly disguised as ‘able-bodiedness’” (Grue and Sherry 14). But how do we learn disability? How do we learn what is normal and “culturally appropriate” (Burch and Rembis, 131-2)? An examination of material culture can provide insight into the early introduction to American children of problematic disability conventions and views of normality. For example, the toy pictured above at right allows the user to swivel and mix/match parts of different animals’ bodies. This toy teaches the user “the undesirability of diversity in bodily difference” along with the notion of “correct and incorrect bodies” (Burch and Rembis 131-2). Such an object exemplifies the relation of disability to the norm. Normality also plays into gender and the creation of gender roles.
The normative gender roles of western civilization — the social prescription of a set of behaviors supposedly appropriate for a person of a certain gender — strongly affect physically disabled women. These women have faced great discrimination by not fitting the normative appearance, actions, or life course of their gender (Burch and Rembis 356-357). As Chimamanda Ngozi Adichie said, “The problem with gender is that it prescribes how we should be rather than recognizing how we are” (Adichie 34). It is, of course, only by the perception of others that an individual is declared to diverge from the norm, and our immediate perception of a person, without any interaction, relies on their physical state: “their movements, their physiological processes, and the sounds they emit” (Russell 54). The physiology of many people with physical disabilities is observably different from that of a non-disabled person, thus judgments and conclusions are instantly drawn about them.
The abuse of women in the United States “is epidemic” and a drain on the health care system (McFarlane et al. 861). The Missouri Coalition Against Domestic & Sexual Violence asserts that abuse is not a question of money, race, or class — rather it is an issue of gender and a “socially supported behavior, learned through observation, experience and reinforcement. It is learned through our culture, families, schools and peer groups” (“Understanding the Nature and Dynamics” 13-14). The performance of traditional western gender norms for both men and women are believed to be risk factors for domestic violence, as well as historical and “[i]nstitutional structures that promote unequal power” between genders (“Understanding the Nature and Dynamics” 18).
The Power and Control Wheel, a wheel-shaped chart with “power and control” at the center and various abusive behaviors written between the spokes, was created by the Domestic Abuse Intervention Project (DAIP) in order to denote and explain abuse to “victims, offenders, practitioners in the criminal justice system and the general public” (“The Duluth Model”). The Power and Control Wheel specifies the abuser as male and the victim as female in order to show the “power imbalances in relationships between men and women that reflect power imbalances in society… [to] provide advocacy and support for victims, accountability and opportunities for change for offenders, and system and societal changes that end violence against women” (“The Duluth Model”).
The Power and Control Wheel describes common behaviors used to perpetuate abuse, including a segment about isolation (“The Duluth Model”). Isolating the victim is a common controlling tactic used by abusers, often to prevent anyone from finding out about or questioning the abuser’s actions (“Understanding the Nature and Dynamics” 5). Other abusive tactics include “preventing [the victim] from getting or keeping a job,” “saying she caused [the abuse],” and “making her feel guilty” (“The Duluth Model”). There are many factors to consider when analyzing why someone would remain in an abusive relationship or situation. The victim’s emotion, psychology, and “situational realities” all come into play. The abuser may be emotionally manipulative, saying he will stop the abuse, and the victim may be afraid, lack support systems, or feel “helpless, hopeless and trapped” (“Why do Abuse Victims Stay?”). The victim may also feel responsible or blamed for the abuse, for whatever reason. She may be financially dependent on the abuser or may not have the skills to become employed and support herself. Being socially isolated may also prevent a victim from leaving the abuse, and she may not have another place to go. A victim may also lack information or knowledge about resources that could help her report or respond to abuse (“Why do Abuse Victims Stay?”). All of these factors must be taken into account when attempting to understand any abusive situation or relationship.
Abuse of Physically Disabled Women
Women with disabilities face unique risks of abuse because of their “particular vulnerabilities” (Elman and Lodholz), and the abuse of these women remains largely hidden for a variety of reasons. These include limited media coverage, a lack of records, disregarded claims of abuse, and a lack of reporting (West and Ghandi). While this paper focuses on “[p]hysical abuse (e.g. hitting, slapping and/or restraining)… [and s]exual abuse ([i.e.] forcing someone to engage in sexual acts),” verbal, emotional, and financial abuse may also be involved (“Abuse of Women with Disabilities).
The specific form of disability can greatly impact the risk and manifestation of abuse. Studies indicate that people with developmental disabilities are up to ten times more likely to experience sexual abuse than people without those disabilities. As shown below, the numbers are very different when analyzing the abuse of physically disabled women, and the differences between this abuse and that of non-disabled women are more subtle (Elman and Lodholz). As stated above, this paper’s analysis aims to investigate why physically disabled women who are sexually or physically abused are often unable or unwilling to report and seek help for abuse compared to non-disabled women who are abused (West and Ghandi). A series of studies conducted within the last 20 years serve as the basis for the analysis within this paper.
Firstly, a study at the Baylor College of Medicine, published in 1997, collected 860 responses from a national sexuality survey, with responses from 439 non-disabled women with self-reported physical disabilities — with no sign of cognitive disability or mental health issues — and 421 non-disabled women (Young et al. 34-6). The study assessed if each woman had ever been subject to emotional, sexual, or physical abuse, and if so, by whom, and for how long. The results included surveys from women with a wide range of physical disabilities, who were between 18 and 65 years old, and 68.9% of these women reported using a wheelchair (Young et al. 34-6). The results of the Baylor study show that, contrary to the belief that physically disabled people don’t experience abuse, disability is not a “protective factor…when it comes to abuse” (Young et al. 37). In fact, the study reported that physically disabled women “are most at risk for abuse of all types from their husbands or live-in partners, compared with other perpetrators, in the same proportions as women without physical disabilities” (Young et al. 37). However, it was discovered that the emotional, physical, and sexual abuse of physically disabled women lasted for “significantly longer periods of time than women without physical disabilities (7.4 years vs 5.6 years) [emphasis added]” (Young et al. 36-7). This finding is crucial for the analysis in this paper, as it demonstrates the prolonged abuse of physically disabled women.
Another study, led by Sharon Milberger of Wayne State University and published in 2002, assessed 177 physically disabled women over the age of 18 in Michigan. The study included women with “those disabilities that result in functional impairment such as cerebral palsy, postpolio, spina bifida, amputation… rheumatic conditions… multiple sclerosis, spinal cord injury, [etc.]” (Milberger et al. 5-6). One hundred women (56% of the participants) reported having experienced abuse since the age of 18, and 85 of these women then completed a follow-up survey. Of these women, “87% reported [non-sexual] physical abuse… [and] 66% reported sexual abuse… Most of the women (74%) reported abuse that was chronic in nature (i.e., for at least 3 months) and over half (55%) reported multiple abuse situations during their adult life. The majority of women (80%) indicated their abuser was a male partner…” (Milberger et al. 11).
The 2001 study of the abuse of physically disabled women, led by Judith McFarlane, used the AAS-D (Abuse Assessment Screen-Disability) method, which includes abuse-assessment questions specific to disability. In this study, 1 in 10 participants reported that they “had been abused within the last year [emphasis added]” (McFarlane et al. 861-4). This study also revealed that the physical or sexual abuser of the physically disabled women “was most likely to be an intimate partner” (McFarlane et al. 861). In general, also, most perpetrators of sexual abuse of disabled women are male caregivers or male family members (Elman and Lodholz).
Another study, conducted by West and Ghandi and published in 2006, was centered on the reporting of abuse of people with disabilities. The results of this study indicate that, when people with disabilities choose to report abuse, they may report to family members, law enforcement officers, and agency staff. Participants of this study also noted that “social support systems often do not believe them or discount their reports because of their disability status” (West and Ghandi). In Milberger’s study, only 33% of the women reported having “sought help for their abuse” (Milberger et al. 12).
The studies discussed above have displayed that men are most likely to physically or sexually abuse women with physical disabilities. This allows us to assess the abuse in part as an issue related to gender. It is also clear that women with physical disabilities who are abused are either less willing to report abuse or less able to escape from abuse scenarios, because their abuse lasts longer than that of women without physical disabilities (Young et al. 36-7). Because the abuse of someone with a disability is similar to abuse in scenarios where disability is not a factor (Sobsey et al. ix), we can analyze the latter case of abuse in order to better understand the abuse of physically disabled women. As we subsequently apply the unique situation of a physically disabled woman to the trends of gender-based abuse (presented in Section III), it becomes evident why the abuse of physically disabled women goes on for longer periods of time. The factors which will be considered in this analysis are control and agency, social isolation, dependence, blame and responsibility, and the lack of resources or alternatives.
Control, Power, and Agency
Just as abusers are motivated by control (Elman and Lodholz), abuse is made possible and exacerbated by gender power imbalances (“The Duluth Model”), and victims may have a sense of powerlessness (“Why do Abuse Victims Leave?”). Likewise, physically disabled women who are abused “may perceive that they are powerless to escape” (Young et al. 37). Issues of power, control, and lack of agency are rampant in the lives of physically disabled women. These issues arise in how disability is defined — in the theoretical model used — and in dehumanization and lack of agency for patients in clinical encounters, all of which compound upon the power and control imbalances in abuse scenarios.
According to Grue and Sherry, the only value in a theoretical model of disability is “insofar as it makes disability better understood, more clearly seen” (Grue and Sherry 29). The theoretical models of disability that health practitioners select are quite impactful, because the chosen model largely determines a practitioner’s view of and approach to disability, as well as the treatment that disabled people receive. There are three traditional categories of theoretical models of disability: medical, functional, and social (Chan, Da Silva Cardozo, and Chronister 24-27). These models allow us to comprehend how disability, and disabled people, are viewed and treated by doctors and others involved in health intervention. The medical model will be considered in this analysis, as its implications represent the potentially harmful aspects of clinical encounters.
The medical model of disability is one of the oldest models — it is hinged on the assessment of a patient’s body in terms of “normalcy versus pathology.” This model disregards all social and environmental factors that might be involved in the construction of disability, instead viewing disability solely as part of the patient’s body, and the patient alone must be fixed or repaired to standards of physical normalcy. There are few and inadequate support services in this “paternalistic” model, and the disabled person’s life is dictated by doctors (Chan, Da Silva Cardozo, and Chronister 24-5; Burch and Rembis 127). As such, the medical model may be understood as “denying agency to disabled people.” Grue and Sherry equate this to “inhumane treatment” and argue that this approach may be viewed not as a model, because it does not offer a “theoretically viable perspective,” but rather as the medicalization of disability (Grue and Sherry 38). Many analyses at the basis of disability studies assert that the medicalization of disability acts as “a form of social control” (Grue and Sherry 53).
In clinical encounters, many disabled women are put in situations where medical models of disability are being used — where the practitioner’s sole focus is the patient’s impairment — too often without sufficient privacy. One woman attested to a sense of dehumanization: “I felt like I wasn’t even human” (Devlin and Pothier 234-5). These feelings may arise when exposed to such “form[s] of violation” that women with physical disabilities have reported, such as “‘public stripping’: the practice of being forced to disrobe and display our different-looking bodies in medical educational settings …often before mixed audiences of professionals and non-professionals or photographers’” (Devlin and Pothier 234-5).
Studies have displayed how women with physical disabilities “did not often feel included in the dialogue or judgment about their well-being.” Instead, conversations about the women were between doctors or with family members. The physically disabled women were not included in the dialogue (Devlin and Pothier 235). In general, women with physical disabilities experience more invasive medical examination and more frequent exposure to sometimes dehumanizing medical practices/experiences than others (Devlin and Pothier 236-7) and are given less agency to determine their own lives and care.
And, if social power imbalances are reflected in relationships (“The Duluth Model”), then it seems likely that a physically disabled woman, whose life is so determined by others, is faced with greater power imbalances in personal relationships. The power imbalances in medical settings, to which these women are exposed because of their disabilities, compound upon the power imbalances of abuse scenarios, likely exacerbating a sense of powerlessness and contributing to the prolonged abuse of women with physical disabilities.
Firstly, to address the harmful gender power dynamics that play out in instances of abuse, legislators and reformers must acknowledge and examine the intersection of disability and gender (Elman and Lodholz). Moreover, decisional autonomy is a crucial component in empowering and giving agency to women with physical disabilities in medical or care scenarios, by reconsidering independence and autonomy. “Independence…needs to be understood not as being able to perform activities for oneself without assistance, but as being able to exercise control over whatever help is required in order to achieve chosen goals and objectives” (Fine and Glendinning 610). With this independence, a physically disabled person could “continue to exercise a substantial level of decisional autonomy, which maintains a sense of self and personhood intact, even though the execution of those decisions may involve others.” (Fine and Glendinning 610). As such, women with physical disabilities must be included in their own treatment and in the assessment of their health and wellbeing (Devlin and Pothier 235). An additional solution could be a law requiring periodic private and confidential discussions between physically disabled women and their health practitioners.
Furthermore, there must be a de-emphasis of the medical model of disability in order to combat dehumanizing methods and entirely individualized views of disability. A new model of disability should become the norm for researchers, practitioners, the public, and for people with disabilities. The theoretical model created by the World Health Organization, called the ICF model of disability (International Classification of Functioning, Disability, and Health) (Chan, Da Silva Cardozo, and Chronister 13), takes personal and environmental influences into account, in relation to each individual’s health. The ICF model has the potential “to improve the efficacy and effectiveness of current health, psychosocial, and vocational interventions, leading to full participation for persons with disabilities” (Chan, Da Silva Cardozo, and Chronister 29-30). Participation is the cornerstone of this model; rehabilitative measures aim to increase the quality of life and lead to greater participation and integration for disabled people in society (Chan, Da Silva Cardozo, and Chronister 30-5). To combat dehumanizing methods, Drum, Khran, and Bersani argue that the “evolution of disability history and policy in the United States can be described as the increasing humanization of disabled people: humanization is defined as recognition that disabled people have human needs and characteristics, and public policy must be designed to reflect and further this human potential” (Drum, Krahn, and Bersani 56-7). Grue and Sherry also recommend a focus on the political and civil rights of people with disabilities (Grue and Sherry 53).
A common tactic used by abusers, to control their victims, is to isolate them (“Understanding the Nature and Dynamics” 5; “The Duluth Model”). Disabled people have faced social isolation and exclusion throughout history (“Americans with Disabilities Act”); before the mid-20th century, as the United States government followed a policy of segregation, disabled people were “isolated from the social mainstream and denied the benefits and opportunities available to nondisabled persons” (Drum, Krahn, Bersani 51). This social isolation inherent in the disability experience compounds upon abusive tactics of social isolation, creating further obstacles to reporting or seeking help for abuse.
Social isolation can be defined as either the objective quantity of a person’s social interactions with others, or a person’s subjective dissatisfaction with the quality of their social interactions (equivalent to loneliness). While social isolation can be a result of many factors, gender does play a role — “for men, social isolation is commonly linked to the loss of a partner/spouse, whereas for women the absence of wider social networks can be of equal concern” (“Social Isolation” 4). A study by the National Organization on Disability designated social isolation “as one of the most important, persistent problems that affect people with disabilities” (“Social Isolation” 7), and the ‘Americans with Disabilities Act of 1990’ acknowledges the historical isolation and segregation of people with disabilities (“Americans with Disabilities Act”). Social isolation is a particularly serious problem for disabled women (“Social Isolation” 7). While all people with disabilities “share similar experiences of isolation, marginalisation, and discrimination,” research has revealed that disabled women are even more isolated than disabled men (Habib 50), and Baylor College highlighted social isolation “as a common secondary condition associated with any primary disability in women” (“Social Isolation” 7).
Physically disabled women are also isolated from resources that could enable them to report and end abuse. These women “often do not view doctors as confidants, thus these women are frequently isolated from potential sources of help” (Milberger et al. 4). Additionally, women with disabilities “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” (Elman and Lodholz).
Thus it is evident that women with physical disabilities are already more isolated than both non-disabled people and men with physical disabilities. And, since abusers may also intentionally isolate victims, limiting contact with networks of friends and family who might be able to help stop the abuse (“Understanding the Nature and Dynamics” 5), women with physical disabilities become even more isolated when they are abused. In this manner, social isolation creates difficulties for a victim to report or escape abuse (“Why do Abuse Victims Stay?”). Thus it is likely that physically disabled women who are abused, with their now significantly above-average isolation, would be less able to do so. This would result in prolonged abuse. Increased opportunities for participation and involvement in their communities are necessary to decrease the social isolation of women with physical disabilities and thus to prevent abuse.
As we have seen, when a victim is dependent on her abuser, financially or otherwise, she may be less likely to leave the relationship/situation. This may be a result of a lack of skills or employment opportunities (“Why do Abuse Victims Stay?”). In a similar vein, women with physical disabilities suffer from employment discrimination, which would likely increase their financial dependence, and they are often more physically dependent on their abusers than other women; abusers may be primary caretakers. These dependency factors likely create greater barriers to a physically disabled woman’s leaving an abusive situation, because she may not be able to support herself financially or find other people who will provide care.
By and large, people with disabilities are provided with fewer resources, opportunities, and skills than others in society. They are often disadvantaged in the job market, with lower salaries and fewer employment options, in the health care system, in education, in housing, and in problems of physical accessibility (West and Ghandi; “Social Isolation” 7; Kittay, Love’s Labor 49). Disabled women, in particular, “are likely to be more economically dependent, mainly due to a high rate of illiteracy, and limited vocational training, making them less attractive to employers” (Habib 50). These disadvantages likely impact the frequency of abuse of physically disabled women; in the study led by Milberger, 46% of the respondents who had experienced abuse were unemployed or had lost their jobs (Milberger et al. 10).
In the Baylor College study, it became apparent that physically disabled women “faced some unique risk factors that made them susceptible to physical or sexual abuse… [including the] inability to leave an abusive situation because of mobility impairments or dependency on a caregiver” (Young et al. 35). Physically disabled women who are abused by their caregivers “may be so dependent on their caregivers that they fear risking either not having their needs met or being placed in a more restrictive environment if they try to do something about the abuse” (Young et al. 37), and other researchers and scholars reached the same conclusion (Milberger et al. 3; Elman and Lodholz). In that manner, participants in one study did not report abuse because, among other reasons, they feared “losing a needed caretaker, and consequently [were] willing to tolerate a certain level of abuse” (West and Ghandi). Women with disabilities may also have fewer possible courses of action or resources because of their disability-related dependency. They are often cared for by perpetrators, which complicates the process of reporting; perpetrators may force themselves into all medical discussions, settings, or places where victims might be able to report, so that victims have no chance to report abuse (Elman and Lodholz).
These findings demonstrate that the increased economic and care-related dependency of women with physical disabilities creates obstacles to reporting and escaping abuse. Thus, to fight abuse, it is first necessary to combat the economic dependency of physically disabled women by bringing an end to employment discrimination for women with disabilities. The ‘Americans with Disabilities Act of 1990’ acknowledges the continuation of this discrimination and states:
No covered entity shall discriminate against a qualified individual with a disability because of the disability of such individual in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions, and privileges of employment. (“Americans with Disabilities Act”)
This law, and others like it, must be rigorously enforced.
To further combat abuse, other facets of dependency must be addressed. A victim may be so dependent on her abuser that she cannot find any private place or method to report abuse, so medical care providers must actively look for signs of abuse in dependent patients, and they must be trained to do so (Young et al. 38). If there are any signs or suspicions of abuse, practitioners “should talk with the client directly and privately about the abuse, assess the degree of danger she is experiencing, help her develop a safety plan (including emergency shelter, transportation, supplies, medication…), document the incident in the medical record, plan for follow-up care, and give her information on resources that could help her” (Young et al. 38).
Procedural improvements can also be made — research has shown that private interview questionnaires are significantly more effective at detecting abuse of physically disabled women than self-reporting, for example, on medical history forms. In one study, “[a]pproximately 8% of women self-reported abuse on a standard medical history intake form, but when asked the same abuse assessment questions in a private interview, 29% of the women reported abuse” and, as such, “four simple clinical screening questions can detect abuse. Assessment for physical, sexual, and disability-related abuse must be standard care for disabled women” (McFarlane et al. 864-5).
The findings in this section reveal that economic dependency, exacerbated by employment discrimination, as well as disability-based dependency can serve to prevent physically disabled women from reporting and escaping abuse. Thus, as outlined above, the enforcement of employment equality and innovations in health care procedure can help to detect and stem the abuse of physically disabled women.
Blame and Responsibility
The perception of blame or responsibility for one’s own abuse can prevent an abuse victim from escaping the situation or relationship (“Why do Abuse Victims Stay?”). Perceived blame and accountability play an even greater role in the abuse of women with physical disabilities. Firstly, there is a misconception that the stress from the dependency of disabled people causes caretakers to abuse them (West and Ghandi). So, when disability is cast as an individual’s flaw, there may be a resulting notion of responsibility for the dependency that results from that supposed flaw, which poses further challenges to a victim’s escape from abuse. Blame is also a common thread throughout disability history; disabled people were blamed for their condition (Burch and Rembis 351), and women with physical disabilities were blamed for social ills (Burch and Rembis 345). The amplification of blame in the perception of women with physical disabilities likely contributes to their unwillingness or inability to report abuse.
This is displayed in the study led by Milberger: women with physical disabilities who did not report abuse or seek help said that “feeling guilty about being a burden or… [believing the abuse] was their fault” were some of the reasons that they did not report abuse (Milberger et al. 12). Similarly, by some participants in a study cited by West and Ghandi, “stress was seen as a factor that sometimes caused anger to be redirected away from the abuser and inappropriately focused it on the person being abused” (West and Ghandi). And, as we have seen, in the medical model disability is thought to exist solely within the person, with no effects from social or environmental factors (Chan, Da Silva Cardozo, and Chronister 24). With this view, there might stem the perception that an abuser’s stress results entirely from the victim’s disability, transferring the blame onto the victim. With disability “cast… as a personal deficit or deviance” (Dolmage 37) in so many discourses and practices, a victim might easily internalize this kind of view because models of disability have the power to impact the psychology and social mentality of disabled people (Chan, Da Silva Cardozo, and Chronister 24).
Yet it is necessary to understand the power of disability stigma, to comprehend how disability is cast as a flaw or something to be blamed. The concept of disability is very powerful; according to Jay Dolmage, “the attribution of disability is used to shore up other stigmatization–for instance, categorizations of race and homosexuality have relied upon the attribution of biological inferiority.” Thus disability, with historically linked concepts of flawed physical difference and inferiority, is the supposed rationale behind and justification for other types of discrimination (Dolmage 20). Disability is a “historically bound construct” (Burch and Rembis 318-9), as we will see, and blame is one factor that shaped definitions and perceptions of disability, as well as the disability experience, throughout numerous historical contexts.
There is evidence that even in prehistoric times disabled people were ostracized and often left to die in some cultures. In Greek culture many physical disabilities were viewed as “signs of evil and its victims were regarded as ‘monsters’” (Drum, Krahn, and Bersani 46-8). Disability was also linked to sin and divine punishment and, as late as the 17th century, it was associated with “demons, witches, and other evil powers.” Disabled people could even be banished from communities to avoid bad luck (Drum, Krahn, and Bersani 46-8). In the North American Colonies, disabled people were seen as “unproductive burdens” and “the existence of a disability justified denying a person the right to participate in the community” (Drum, Krahn, and Bersani 49-51).
In the United States around the mid-20th century, a new view of disability and dependence began to take shape, with an emphasis on “the individual failings of welfare clients… [which] certainly would have informed how women with disabilities perceived their own situations as well as how public officials interpreted their behavior” (Burch and Rembis 351). These attitudes of blame are reflected in the statements of two prominent medical officials, Mary Switzer and Howard Rusk, in 1953. Switzer and Rusk declared that a woman’s disability “was a leading cause of ‘broken homes and the disintegration of healthy family life.’ They warned that disability, especially of a wife and mother, had the power to ‘destroy a home, cast children adrift, exhaust the husband’s earnings, and produce public costs which are so large, and so prolonged, as to be almost immeasurable’” (Burch and Rembis 345). Here, responsibility for social problems was placed on the disabled woman.
Adichie states, “[w]e are all social beings. We internalize ideas from our socialization” (Adichie 30). Surrounded by notions of gender- and disability-based blame and projections of disability and dependency as individualized flaws, it is logical that women with physical disabilities may internalize blame. By internalizing a sense of responsibility for her disability and dependency, an abused woman could then feel responsible for, or perhaps even deserving of, the abuse supposedly caused by her dependency. This would contribute to prolonged abuse. To prevent the abuse of physically disabled women and its prolongation, these misconceptions and negative views must be remedied in our society.
Firstly, it is necessary to combat the notion that stress — supposedly caused by the dependency of a person with a disability — is the cause of, or an excuse for, abuse. Physically disabled women, and the general public, must be informed that “[d]omestic violence is not caused by… stress, the behavior of the victim or problems in the relationship” (“Understanding the Nature and Dynamics” 13-14). It is problematic when a victim of abuse perceives stress as a cause of abuse, and it is also harmful when anyone else has this perception because, it could prevent the proper response to a report of abuse. As a disabled woman in a focus group said:
“[T]here seems to be more of an excuse for the person who’s an abuser because they’re care giving [sic] someone with a disability, so they must be tired or they’re overworked and so that abuse goes on longer because people kind of turn their heads and make excuses when if it were in reverse they probably wouldn’t. They would probably be a little more involved…” (West and Ghandi)
Furthermore, Habib cites “negative attitudes which set up social barriers to integration and participation” (Habib 50); to combat these negative attitudes, and the perception of blame that can stem from them, there must be a more positive perception of disability. Grue and Sherry explain that “[p]ositive valuations tied to the category of disability can always and only be associated with emergent properties of the disability experience or disability community… [including c]ultural and artistic forms of expression, solidarity, social connectedness, a deeper or broader understanding of human life and the human condition” (Grue and Sherry 100).
Women with physical disabilities must not be made to feel that they are to blame because of the dependency that results from disability. Currently, dependency’s “connotations are almost entirely negative” (Fine and Glendinning 605-6) — Tom Shakespeare explained how dependency frequently “connotes negative ‘burdens’ and deficiencies on the part of the person needing help, and [he] argued that the voices of those needing help must be heard” (Fine and Glendinning 610). To counter these negative views of dependency, Eva Feder Kittay writes that it is “better to acknowledge our dependency as a feature of all human life, and to develop relationships that are genuinely caring and respectful” (Kittay, “The Ethics of Care, Dependence, and Disability” 54-5). She is a proponent of the so-called “ethic of care” (Fine and Glendinning 604). Kittay asserts:
We need an ethic that can also help guide relationships between different sorts of care providers (family members, hands-on care assistants, medical [personnel]) and people with different sorts of care needs. Paternalism is the only alternative to autonomy when autonomy is the norm of all human interaction. Cooperative, respectful, attentive relations are, I suggest, better alternatives than paternalistic responses toward those who depend on us in times of need (Kittay, “The Ethics of Care, Dependence, and Disability” 54-5).
Resources, Alternatives, and Accessibility
As demonstrated above, when a victim of abuse has no alternative, or no means to support or live by herself, she may be more likely to remain in an abusive situation or relationship. A lack of somewhere else to go and a lack of information about resources are reasons abuse victims might not leave; they may also feel “helpless, hopeless and trapped” (“Why do Abuse Victims Stay?”). Likewise, women with physical disabilities face more and greater obstacles to accessing resources than do others in society, preventing the successful reporting of abuse and giving these women fewer or no alternatives to remaining in an abusive situation. Some physically disabled women may not have the understanding, sexual education, or information about the actual definition of abuse, to recognize themselves as victims (Chan, Da Silva Cardozo, and Chronister 465). Medical systems are also responsible for the prolonged abuse of women with physical disabilities.
The Baylor College study found that physical disability indeed plays a part in the prolonged abuse of women with physical disabilities because “interventions that are available for women in general, such as shelters and battered women’s programs, may not be available or accessible to women with physical disabilities” (Young et al. 37). A study in Texas found that over one third of domestic violence shelters were not “physically accessible” to disabled women, and these women are also simply refused by many shelters. Furthermore, when women with physical disabilities are able to access these shelters, they find workers who “are often not fully trained to respond adequately to [their] specific needs” (Milberger et al. 3-4). Similarly, in the study led by Milberger:
Roughly half of the participants reported a good experience [of reporting abuse] where service providers were able to accommodate their disability, the women received counseling and were able to resolve the crisis situation. The other half indicated a less positive experience in which service providers were not able to resolve their abusive situation (e.g., called the police but no action was taken… [or] the shelter could not accommodate their disability) (Milberger et al. 12).
For women with physical disabilities, obstacles to reporting and ending abuse might be related to “the absence of accessible reporting devices… assistance personnel… comfortable examination devices, and community spaces that are architecturally accessible” (Elman and Lodholz), as well as the absence of transportation. Women with physical disabilities are also “less likely to receive pelvic exams than women without disabilities because of doctors’ reluctance to provide them” (Milberger et al. 4).
Many resources are not available to people with disabilities, often including sexuality education, without which they are in greater danger of sexual abuse (Chan, Da Silva Cardozo, and Chronister 465). Disabled people may be exposed to unique intimate care situations and are often denied “appropriate sex education and opportunities for sexual expression” (Sobsey et al. x). One 2003 study involving health practitioners revealed that 90% of respondents felt that some sexual education should be included in care, yet “86% of staff was found to be poorly trained, and 94% indicated that they were unlikely to discuss sexual issues with their patients or clients… Women may be twice as likely as men to not receive any sexual education or counseling” (Chan, Da Silva Cardozo, and Chronister 465).
It is clear that the systems in place for service providers, both in medicine and law enforcement, are currently inadequate in addressing and preventing the abuse of women with physical disabilities, and there is a serious lack of disability accommodation and training in domestic violence shelters. And, as described, women with physical disabilities frequently do not have access to resources or information that could help them report or seek help for abuse. Left without resources and alternative places to live, physically disabled women who are abused are unlikely to be able to escape the abuse. Therefore certain changes must be made to health care and abuse response systems.
The results of West and Ghandi’s 2006 study indicate that, to grasp and confront issues like abuse, the perspective of the affected groups should be accounted for, and disabled people should be able to attain training to learn self-advocacy skills, understand their rights, and be introduced to possible courses of action when rights are violated, and there should be specific training concerning abuse (what exactly can be considered abuse, where are people vulnerable, who are likely perpetrators, etc.) (West and Ghandi) and abuse response programs should coordinate with programs serving disabled people to achieve this (“Understanding the Nature and Dynamics”). Likewise, appropriate sex education, addressing their distinct vulnerabilities, must become available to women with physical disabilities (Elman and Lodholz). Police and providers of care should also be given training (West and Ghandi), and those working with disabled women who have been abused should never assume anything “about a person’s abilities based on appearance and, when in doubt, should not be afraid to ask the individual what support she needs. Advocates should be open, respectful and flexible—as they are when working with all victims” (“Understanding the Nature and Dynamics”).
Participation and Conclusion
A number of disability and abuse-related factors have been discussed in this analysis. The factors in the lives of physically disabled women that correlate with trends in gender-based abuse (which prevent victims from reporting or leaving abusive scenarios) are as follows: 1) control and power; 2) social isolation; 3) dependence; 4) the self-perception of blame or responsibility; and 5) the lack of resources and alternatives. As we have seen, these factors compound upon the related trends of gender-based abuse, and cause the abuse of physically disabled women to last longer than the abuse of non-disabled women. Thus, in order to prevent and fight the abuse of physically disabled women, these factors must be specifically combatted, as discussed in the sections above. The fifth factor — the lack of resources and alternatives — can be addressed with systemic and procedural changes, but the other factors require more subtle, yet no less crucial, modifications, which greatly rely on increased participation (explained below) for women with physical disabilities . The task of instating these changes falls on health practitioners, policy-makers, disability advocates, and members of society as a whole.
First the concept of participation must be introduced. While scholars and researchers of disability have attempted to specifically define participation in the community, many disabled people view participation as “an individualized concept” that should be left to each person to determine. Participation has been variously defined as “active and meaningful engagement; choice and control; access and opportunity/enfranchisement; personal and societal responsibilities; having an impact and supporting others; and social connection, inclusion, and membership” (Chan, Da Silva Cardozo, and Chronister 33-5). Participation can be evaluated with relation to “mobility; role functioning; community, social, and civic life; domestic life/self-care; economic life; interpersonal relationships; communication; work; [and] education” (Chan, Da Silva Cardozo, and Chronister 43). Increased participation will combat the disability factors and general trends of abuse, to prevent abuse and to spur earlier and successful reporting and aid to women with physical disabilities when abuse occurs.
Physically disabled women are often deprived of control in their lives and decisions, frequently in relation to clinical encounters, and the usage of the medical model of disability contributes to dehumanization and the lack of agency given to physically disabled women. These women should be able, and actively encouraged, to participate in dialogues regarding their health and treatment. This will give them more power over their lives and their care, which will reinforce the knowledge that they have control over what happens to their bodies (this knowledge might otherwise be undermined by abuse). Such empowerment may prevent abuse or encourage victims to seek help. As such, increased participation, viewed as “active and meaningful engagement… [and] choice and control” (Chan, Da Silva Cardozo, and Chronister 33-5) and assessed in terms of “domestic life/self-care” (Chan, Da Silva Cardozo, and Chronister 43) would combat abuse.
There are also misconceptions that the dependency of physically disabled women is to blame for abuse, likely causing women to feel responsible and keeping them from reporting abuse. By dispelling these misconceptions and introducing more positive views of disability and dependency, as well as by emphasizing social contributing factors, we will be able to encourage earlier reporting of the abuse of physically disabled women. If these women, their unique perspectives, and their participation in society were celebrated, giving a more positive valuation to disability, the perceptions of blame could be undermined, thus undermining the perpetuation of abuse.
In current times and throughout history, disabled people have been excluded from society, and social isolation is a particular problem for women with physical disabilities. Because social isolation is a risk factor of gender-based abuse (“Understanding the Nature and Dynamics” 14), this is amplified by disability, posing even more challenges for women with physical disabilities to report and escape abuse. As such, if these women were to have more participation — more “social connection, inclusion, and membership” (Chan, Da Silva Cardozo, and Chronister 33-5) evaluated in relation to “community, social, and civic life… [and] interpersonal relationships” (Chan, Da Silva Cardozo, and Chronister 43) — then they would have less social isolation and would likely be more able to report abuse.
Women with physical disabilities face discrimination in employment, increasing their financial dependence upon others (including an abuser) which can create challenges to leaving an abuse situation. These women may also be dependent on their caretakers in other ways, related to disability, which may prevent escape from abuse. Increased participation, viewed as increased “access and opportunity” (Chan, Da Silva Cardozo, and Chronister 33-5) assessed in terms of “economic life… [and] work” (Chan, Da Silva Cardozo, and Chronister 43), would decrease the economic dependency of women with disabilities, and greater participation — in “personal and societal responsibilities” (Chan, Da Silva Cardozo, and Chronister 33-5) — would limit the harmful effects of disability-related dependency.
Participation is nearly always cited as a major — if not the ultimate — goal of rehabilitation efforts for people with disabilities. Some scholars have “identified participation as the key final outcome of the interaction of personal and environmental factors with the domains of body structure, body function, and activities” (Chan, Da Silva Cardozo, and Chronister 38). Similarly, disabled people aim to achieve more participation, status, and control (Grue and Sherry 53). These are legal aims as well; according to the ‘Americans with Disabilities Act of 1990’, “the Nation’s proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals” (“Americans with Disabilities Act”). Because people with disabilities are “denied full participation in society… their marginalization places them at a serious disadvantage within the community” (West and Ghandi). Indeed, a lack of participation also puts physically disabled women at risk for abuse. Participation is a certain goal for people with disabilities — acknowledged as such by scholars, practitioners, lawmakers, and the disabled people themselves — but participation must be recognized for its links to, and its power to combat, the abuse of physically disabled women.
From this analysis of the correlating trends of gender-based abuse and of physical disability factors, it becomes clear that women with physical disabilities are at risk for prolonged abuse because of these exaggerated phenomena — of control and power imbalances, social isolation, financial and disability-related dependence, the perception of blame or responsibility, and the lack of resources or alternatives — in the lives of these women. The solutions to these obstacles rely greatly on increased participation for physically disabled women. We may then learn something about abuse in general. The Missouri Coalition Against Domestic & Sexual Violence states that abuse “is a gender issue” (“Understanding the Nature and Dynamics” 13). The studies and research behind this paper demonstrate that, for physically disabled women, abuse is in fact an issue of gender and disability, rooted in history, care systems, social attitudes, and participation.
About the Author and Acknowledgements
I chose this topic because I have had experience with chronic illness; in the course of this project, I began to better understand my own experiences. While I am fortunate enough to have never been abused — I have a loving and caring family — I have had some of the same experiences of disability that I’ve read about during my research. I have felt at times powerless, hopeless, and dehumanized by clinical encounters. I’ve had the same struggles with psychosocial adjustment to chronic illness that were put into words by Chan, Da Silva Cardozo, and Chronister. Thus, at several points, this project became very emotional for me. In the past I have struggled to cope with my own powerlessness over my body — but I can only begin to imagine the horror of the compounded physical powerlessness of disability plus the real or perceived powerlessness caused by abuse. I am in awe of the strength and resilience of many of these physically disabled women in taking action to escape abuse, despite the numerous obstacles that they face. I feel the deepest sympathy and respect toward them. I truly believe that something must be done to help physically disabled women who are abused, and this project has given me hope that viable steps can be taken, realistic changes instated.
I would like to express my utmost gratitude to those who have made this project possible. Dr. Slater — thank you for your dedication, and for providing invaluable guidance, wisdom, and support every step of the way during this project. I am deeply grateful for your faith in me. Dr. Vidal — thank you for giving me the opportunity to explore a facet of myself in the context of such an important topic as abuse, and for providing detailed feedback throughout this process. I have so much respect for the work that you do, and the time and effort that you invest in this program. Dr. Hawthorne — thank you for inspiring me to apply for this fellowship, and for all the support you have given me during my time at Andover. I would also like to thank the Brace Center for Gender Studies for giving me this chance to engage in independent research. This project has transformed how I view the concept of abuse, the concept of disability, and my own experiences.
“Abuse of Women with Disabilities.” American Psychological Association. APA, n.d. Web. July 2016. <http://www.apa.org/topics/violence/women-disabilities.aspx>.
Adichie, Chimamanda Ngozi. We Should All Be Feminists. New York: Anchor Books, 2014. Print.
“Americans with Disabilities Act.” Equal Employment Opportunity Commission. U.S. Equal Employment Opportunity Commission, n.d. Web. July 2016. <https://www.eeoc.gov/eeoc/history/35th/thelaw/ada.html>.
Burch, Susan, and Michael A. Rembis. Disability Histories. N.p.: Urbana: U of Illinois, 2014. EBSCOhost. Web. July 2016.
Chan, Fong, Elizabeth Da Silva Cardozo, and Julie A. Chronister. Understanding Psychosocial Adjustment to Chronic Illness and Disability: A Handbook for Evidence-Based Practitioners in Rehabilitation. New York: Springer Publishing Company, 2009. ProQuest ebrary. Web. July 2016.
Devlin, Richard, and Dianne Pothier. Critical Disability Theory: Essays in Philosophy, Politics, Policy, and Law. Vancouver: UBC, 2006. ProQuest. Ebrary, May 2014. Web. July 2016.
Dolmage, Jay. Disability Rhetoric. N.p.: Syracuse UP, 2014. EBSCOhost. Web. July 2016.
Drum, Charles E., Gloria L. Krahn, and Hank Bersani. Disability and Public Health. Washington: APHA Press, 2009. ProQuest ebrary. Web. July 2016.
Elman, Amy, and Tiffany Lodholz. “Confronting the Sexual Abuse of Women with Disabilities.” Violence Against Women. National Resource Center on Domestic Violence, n.d. Web. July 2016.
Fine, Michael, and Caroline Glendinning. “Dependence, independence or inter-dependence? Revisiting the concepts of ‘care’ and ‘dependency’.” Ageing & Society 25 (2005): 601-621. Web. July 2016. <http://www.yorku.ca/mandell/courses/4680/pdf/Fine%20+%20Glendinning%202005%20PDF%20file.pdf>
Grue, Jan, and Mark Sherry. Disability and Discourse Analysis. N.p.: Routledge, 2015. ProQuest ebrary. Web. July 2016.
Habib, Lina Abu. “‘Women and Disability Don’t Mix!’: Double Discrimination and Disabled Women’s Rights.” Gender and Development 3:2 (June 1995): 49-53. JSTOR. Web. Aug. 2016.
Kittay, Eva Feder. Love’s Labor: Essays on Women, Equality and Dependency. New York: Routledge, 1999. Digital file.
Kittay, Eva Feder. “The Ethics of Care, Dependence, and Disability.” Ratio Juris 24 (2011): 49-58. Web. July 2016. <http://evafederkittay.com/wp-content/uploads/2015/01/The-ethics-of-care.pdf>
McFarlane, Judith, et al. “Abuse Assessment Screen–Disability (AAS-D): Measuring Frequency, Type, and Perpetrator of Abuse toward Women with Physical Disabilities.” Journal of Women’s Health & Gender-Based Medicine 10(9) Nov. 2001: 861-66. ResearchGate. Web. Aug. 2016.
Milberger, Sharon, Barbara LeRoy, Angela Martin, Nathaniel Israel, Linda Potter, and Pam Patchak-Schuster. “Michigan Study on Women with Physical Disabilities, Final Report.” N.p.: National Institute of Justice: 2002. Digital file.
Robinson-Whelen, Susan, et al. “Depressive Symptoms in Women With Physical Disabilities: Identifying Correlates to Inform Practice.” Archives of Physical Medicine and Rehabilitation 94 (July 2013): 2410-16. ResearchGate. Web. Aug. 2016.
Russell, Bertrand. The Analysis of Mind. Auckland: The Floating Press, 2009. ProQuest ebrary. Web. July 2016.
Sobsey, Dick, et al. Disability, Sexuality, and Abuse: An Annotated Bibliography. Edmonton, Canada: Paul H. Brookes, 1991. Print.
“Social Isolation and Physical and Sensory Impairment.” Bristol City Council Services. Bristol City Council, Mar. 2014. Web. July 2016. <https://www.bristol.gov.uk/documents/20182/34732/Social%20isolation%20and%20physical%20and%20sensory%20deprivation_0_0_0.pdf/393c572d-5eeb-4b01-b013-b7139843af8e>.
“The Duluth Model – Power and Control Wheel.” Domestic Abuse Intervention Programs. Domestic Abuse Intervention Programs, 2011. Web. July 2016. <http://www.theduluthmodel.org/training/wheels.html>.
“Understanding the Nature and Dynamics of Domestic Violence.” MOCADSV.org. Missouri Coalition Against Domestic & Sexual Violence, Mar. 2012. Web. Aug. 2016. <https://www.mocadsv.org/FileStream.aspx?FileID=2>.
West, Bernadette, and Sampada Ghandi. “Reporting Abuse: A Study of the Perceptions of People with Disabilities (PWD) Regarding Abuse Directed at PWD.” Disability Studies Quarterly 26.1 (2006). Web.
“Why do Abuse Victims Stay?” Domestic Violence Roundtable. Sudbury-Wayland-Lincoln Domestic Violence Roundtable, 2008. Web. July 2016. <http://www.domesticviolenceroundtable.org/abuse-victims-stay.html>.
Young, Mary Ellen, Margaret Nosek, Carol Howland, Gail Fraser Chanpong, and Diana Rintala. “Prevalence of Abuse of Women With Physical Disabilities.” Arch Phys Med Rehabil – Department of Physical Medicine and Rehabilitation, Baylor College of Medicine 78 (1997): n. pag. ResearchGate. 19 May 2014. Web. July 2016.