Challenges for Disabled Lesbians Accessing Mental Health Services
Lesbians with disabilities have atypical life experiences – they are virtually invisible within the mainstream culture. Both women with disabilities and lesbians experience societal, familial and economic pressures that directly impact their lives and the range of options available to them. When a lesbian is also a woman with a disability, the combination of these pressures can be enormous. This article explores the issues and barriers related to disabled lesbians accessing mental health services. Because no systematic research on the mental health needs and experiences of lesbians with disabilities exists, it is unknown how many of them are in need of, access, or are denied appropriate mental health services. The little research that exists on the mental health needs of women with disabilities has either excluded or ignored the particular experiences associated with lesbian identity. Likewise, lesbian mental health research has historically overlooked disabled women’s identity and experiences. Shared experiences and other similarities, such as discriminatory attitudes in the health service system, social stigma, and self-devaluation, are discussed within the context of disabled lesbians’ compounded risk for mental health problems. Service access and barriers, key therapeutic issues, and cultural competency are discussed as additional issues that emerge when addressing mental health services. We also examine how lesbians with disabilities have proactively networked, caring for each other through informal supports within their communities, and by creatively developing their own strategies and resources. The paper concludes with a discussion of new efforts toward gaining visibility, successful strategies for mental health practitioners in addressing issues and challenges associated with providing care to lesbians with disabilities, and recommendations for further research.
Lesbians with disabilities have a history of being excluded or overlooked as distinct or valued groups in our society (Brownworth & Raffo, 1999; O’Toole, 2000; Tremain, 1996). Although it is reasonable to suggest that there are mental health concerns shared by all lesbians, if not all women, this paper focuses specifically on mental health issues and community-based services for lesbians with disabilities whose disability is not primarily psychiatric. We contend that this group of women are at risk for mental health issues which often go unrecognized. Traditional sources of empirical information have not addressed disability and lesbians together, and more research is needed to examine the intersections of lesbians and disabled women’s mental health. A review of the literature reveals only anecdotal glimpses of hypothetical connections between these sub-groups, primarily based on scarce, but rich, narrative accounts where disabled lesbians have written about their lives and experiences (O’Toole, 2000; Tremain, 1996; Panzarino, 1994)).
Traditional western concepts of health often come up against the disability community’s argument that “health” and “disability” are distinct constructs, each defined by world views and social forces that determine how biomedical or physical differences are recognized, classified and assigned value. Acknowledgment from within the health community that persons with disabilities can have the same range of health and well-being as non-disabled persons, or that one’s “mental” health status is as integral to personal well-being as one’s “physical” health status, has been slow in coming (Gill, 2000). Surprisingly, the intersecting relationships or integration of identity status generally are not explored within women’s, lesbian, or disability research (Brogan, Elon, & O’Hanlan 2001; Berkeley Planning Associates 1997; O’Toole, 2000).
Invisibility and Marginalization
Lesbians with disabilities may be ignored because both sex and disability have traditionally been considered taboo (Olkin, 1999), or this may reflect (on a more insidious level) a tendency of our society to devalue and consequently overlook certain groups of people (O’Hanlan. Cabaj, Schatz, Lock & Nemrow, 1999). Effects of invisibility are demonstrated by the non-existence of relevant mental health information for and about disabled lesbians, and for mental health professionals who provide them services (Olkin, 1999). Gaining visibility is a critical concern because the lack of academic inquiry into issues pertaining to disabled lesbians has a direct impact on funding and policies affecting the lives of these women. No data are available from which to estimate the proportion of women with disabilities who also identify as lesbian. Incidental data identifying either sexual orientation or disability, are often collected in studies of women’s health, but rarely are both.
The term “lesbians with disabilities” encompasses a diverse range of women. A major problem in researching lesbians with disabilities lies in the multiplicity of terms and their meanings. Like “lesbianism”, inconsistency in the language of “disability” and consequential conflation of terms pose many challenges to policy makers and researchers, disallowing a uniform comparison of groups in many research traditions (Brogan, Frank, Elon, & O’Hanlan, 2001; O’Toole & D’aoust, 1999; Solarz, 1999). A related concern expressed in literature of disabled women is the tendency to generalize and minimize disability in ways that dismiss the minority experience through assertions that because everyone has “differences”, we all can be viewed as handicapped in certain settings (Brownworth & Raffo, 1999; Olkin, 1999; Tremain, 1996). Lesbian health researchers have addressed similar difficulties in defining the terms “lesbian” and “lesbianism” (Solarz, 1999). Diverse sub-groups within communities may not agree with, or adhere to, any one way of delineating groups. Nevertheless, even if categories and definitions remain arbitrary, overlapping, or conflicting, they are needed. To explore and refine our understanding of similarities and differences within and between groups we label groups in certain ways and we use specific group characteristics to generate ideas about which factors have greatest effects on individuals’ lives.
Disability is at its core a women’s issue, and therefore inherently an issue of importance to lesbians. Over 20% of women and girls in America have a disability (Jans & Stoddard, 1999). Infants and children with conditions leading to lifetime impairment are more likely than ever before to survive into later childhood and adulthood. In addition, the past century has seen a dramatic increase in life expectancy for women. As the likelihood of survival over time increases and women continue to live longer, the population of women with disabilities will grow (Jans & Stoddard, 1999). Emerging disability for women will help shape what America will look like in the coming decades. Likewise, the care and management of people with disabilities is most often relegated to women – whether caring for themselves, an aging parent, a child, a spouse, a lover, or a close friend – and often includes caring for more than one person. Yet, like most issues particular to women, the gender dimension of disability remains underresearched and underfunded. Barile (2000) discusses the importance of advocating for and securing adequate funding for research and programs because policy makers cannot create effective models if they are not aware of the economic and social problems experienced by people with disabilities.
Multiple Identity Issues
The disability and lesbian communities have a shared history of inadequate social and legal supports (Gill & Brown, 2000; Gill, Kirschner & Panko Reis, 1994; O’Hanlan et al., 1999; Rankow, 1995; Tremain, 1996). As Hershey wrote in response to the Matthew Shepard case and other hate crimes:
“When politicians and/or citizens craft laws designed to limit one group’s civil rights or educational opportunities, our society takes a step back from the lofty ideals of Justice and Equality…an intolerant society just isn’t a safe place for anyone who is considered “different.” (1999).
For many lesbians or disabled women, forming an identity as a member of another similarly oppressed group provides valuable support and resources. Indeed, lesbian/queer women with disabilities have written about their struggles with either their lesbian or disability identity while embracing the other . Disabled lesbians may find opportunities to “come out” within some parts of the disability and lesbian communities independently. Identity management can be thought of as a skill developed by lesbians with disabilities to maintain a sense of control over their environments (O’Toole, 2000). In order to attract a sexual partner, or to obtain membership in the lesbian community a lesbian with a disability must be able to “present” herself as a lesbian. Yet, there are few settings where it is acceptable (or safe) to be a sexual disabled woman who loves women. In an effort to protect themselves, many disabled women do not easily disclose their private sexual behavior or label themselves as lesbians (O’Toole & D’aoust, 2000). Clare describes her experience of her disability identity in relation to queerness:
“Somewhere in there, my desire to pass as non-disabled – really to be non-disabled – reluctantly let go but at the same time left its mark…Isolation and connection tug against each other…I never feel this way about queer community…My butchness, my love of dykes and queer culture, my gender transgressiveness all make my connection to queer community unambiguous.” (Clare 1999, p. 134)
`Disabled women often are perceived as either incapable of sexual relationships, or unable to manage them (Fine & Asch, 1989, Gill, et al.,1994). Disabled lesbians, in particular, are not thought of as having the same range of sexual choices as either non-disabled women or heterosexual women (Corbett, J., 1994; O’Toole & D’aoust, 1999; Tremain, 1996). Like nondisabled lesbians, disabled women who choose women as sexual partners are routinely assumed to have accepted the only option available to them. Disability and chronic illness clearly affect the sexual relationship, financial stability, and plans for the future of lesbian couples (Axtell, 1999). However, the impact of a partner’s disability, personal and social support networks, and adjustment to disability by the non-disabled partner, have not been studied. Similarly, no research has focused on lesbian relationships in which both partners are disabled. One of the most well-known examples of “tangled” intersections between disability and lesbian issues in relationships is the story of Karen Thompson who had to fight for many years to gain legal representation of her partner, Sharon Kowalski, after Sharon became disabled (Thompson & Andrezejewski, 1988).
Emergent Mental Health Issues
Because of the lack of research, basic questions about the prevalence and characteristics of mental health issues for disabled lesbians remain unanswered (O’Toole & D’aoust, 1999; Saad, 1997). Studies involving people with disabilities and those focusing on lesbians independently document that discrimination creates an increased need for mental health services. (Olkin, 1999; Gay and Lesbian Medical Association, 2001). Because of persistent discrimination in health services, women with disabilities often are faced with the dilemma of having to choose between allowing misperceptions to persist or exposing multiple stigmatized identities and risking denial of quality care (O’Toole; 2000). The experience of multiple minority status is believed to increase risk for mental health disorders (Greene, 1994). Therefore, understanding how self-concept is affected by social stigma and how disability affects relationships with partners, family, and health care professionals are of key importance to mental health (Saad, 1997).
Depression, Stress and Suicide
Emerging research shows that women with disabilities have very high rates of stress and depression (DisAbled Women’s Network, 1993; Gill, 1999a; Nosek, Howland & Young, 1997). The risk for suicide is believed to be high for women with disabilities, but this issue is complicated because suicide can be masked or facilitated under more “acceptable” social pretenses, such euthanasia. Older women with disabilities have engaged in what Osgood and Eisenhandler (1994) call “acquiescent suicide” — passively reacting to the loss of meaningful social roles by refusing to eat or take medication. New evidence suggests that psychosocial factors are strong indicators of disabled women’s risk of physician-assisted death (Kaplan, et al., 2000). This raises serious questions about whether disabled women are freely choosing assisted-death, and whether they would have the opportunity to withdraw from physician-assisted suicide if underlying depression had been acknowledged and treated (Gill, 1999b). If disabled lesbians come to believe messages from major societal institutions that their lives are undesirable and avoidable (e.g., as in disability campaigns which focus exclusively on “prevention” or “cure”), what does that mean for the person who is (or was) unable or unwilling to prevent her impairment, and cannot be cured? Gaining an understanding of the insidious ways in which external prejudice and internalized devaluation affect mental health is critical to the development of effective mental health services for all women.
Abuse and Violence
Advocates and researchers document alarmingly high rates of abuse and violence against women with disabilities (Berkeley Planning Associates [BPA], 1997; Fiduccia, 1999; Tyiska, 1998; Nosek, et al. 1997; Sobsey & Doe, 1991. Likewise, some evidence suggests that lesbians are at least as likely as heterosexual women to experience adult sexual assault or rape (Brannock & Chapman, 1990), and that sexual coercion may be as prevalent in lesbian relationships as in heterosexual relationships (Waldner-Haugrud & Gratch, 1997). However, there is no information about how many of these disabled women who experience violence or abuse are lesbian.
The lack of recognition by health care providers of disabled women’s risk for abuse and violence, disabled women’s daily contact with, or dependence upon, an abuser (e.g., spouse or family member, teacher, or personal attendant), lack of training for law enforcement officers in the identification and appropriate response to abuse, programmatic and attitudinal barriers to accessible services, and the consequences of ableism, heterosexism, and homophobia, combine to place disabled women, and in particular, disabled lesbians, at considerable risk (BPA, 1997; Fiduccia & Wolfe, 1999; O’Toole, 2000). Domestic violence shelters are virtually inaccessible to lesbians with physical disabilities, and even ten years after passage of the Americans with Disabilities Act, facility directors fail to see the need for changes or to advocate for improved access (Fiduccia & Wolfe, 1999).
Olkin (1999) suggests that people with disabilities may have the highest rates of substance abuse of any minority population, estimated at over 25% compared with 10% to 12% in the general population (SARDI, 2001). Disability is associated with a number of risk factors for substance abuse such as lower education, poverty, and fewer options for dealing with family violence (SARDI, 2001). Emerging evidence of high rates of substance abuse use by women with disabilities is believed to be closely associated with high rates of violence and abuse (Li, Ford & Moore, 2000; Masuda, 1996). The risk increases dramatically as disabled girls transition out of elementary school (Ferrerya 2001). Other risk factors may include enabling behavior and lenient attitudes by family and friends, constrained social opportunities, higher rates of parental alcohol abuse, and physical and attitudinal barriers to drug treatment programs (Olkin,1999).
Despite the prevalence of substance use disorders among people with disabilities, these individuals are less likely to enter or complete treatment due to compounded physical, attitudinal and policy barriers within service systems (SARDI, 2001). Disabled lesbians’ risk for substance abuse is unexplored. In spite of the evidence suggesting that disabled women and lesbians are independently at risk for substance use problems (Li, Ford & Moore, 2000; GLMS, 2001; Masuda, 1996), community mental health providers appear unwilling or unable to acknowledge that disabled lesbians are a high risk group (Olkin, 1999; Fidduccia & Wolfe, 1999).
Gaining Access to Mental Health Services
Lesbians with disabilities are often denied access to mental health services because of disability-related physical, attitudinal, policy or programmatic barriers (Olkin, 1999; Brownworth & Raffo, 1999; RRTC on Drugs and Disability [RRTC], 1996). If accessibility is addressed at all, most mental health centers focus exclusively on physical barrier removal, in part because of assumptions that disability means physical impairment. Contemporary models of mental health care are based on a medical model in which disability is defined in terms of individual deficits and the ways in which people with disabilities vary from highly valued mainstream norms. The emerging minority or social model of disability takes into account societal forces and environmental influences affecting how individuals experience disability, or lesbianism, within a given society The social model also removes the onus of responsibility and deficit from the individual, and places greater emphasis on social forces and perceptions that can be altered or modified (Gill, 2001).
Traditional mental health training generally does not assist providers in gaining insight into the constellation of factors that influence the everyday life of a lesbian with a disability (O’Toole 2000; Olkin 1999). Mental health providers are not exempt from the powerful influence of stigma and social stereotypes (American Psychological Association [APA], 2000) and may unknowingly perpetuate stereotypes of lesbians, of people with disabilities, or both (Olkin, 1999). Health providers’ beliefs about disability affect how disabled clients are viewed – they are often surprised to discover that many disabled women are independent, self-directed, and fulfilled (Gill, 2000; Olkin, 1999; Rousso, 2001).
The notion of cultural competence urges mental health professionals to examine aspects of diversity within a larger population, acknowledge existing disparities in resources and services, and develop the necessary skills for addressing the unique experiences shared by individual members of a cultural group. Disabled women and lesbians share many concerns and experiences yet have distinct cultural realities. Integrated cultural competence is key to developing successful mental health service models. Often approaches which are considered to be exemplary for non-disabled or non-lesbian clients may be based on beliefs or experiences which are irrelevant or do not adequately address the distinctive experiences  of being a person with a disability (Olkin, 1999) or a lesbian. Gill (2000) summarizes the challenges in assisting health professionals to gain cultural competence in working with disabled clients:
“What health professionals perceive the key problem (functional limitation) is viewed by many disabled persons as insignificant compared to socially derived limitations. What they thought was a tangible problem in the individual is in fact abstract and complicated, requiring cultural, political, social and economic analysis. What they expected to address successfully through systematic application of their skills is a frustratingly entrenched problem that eludes fixing. When they thought they were helping, it could be said that they were participating in a system that has hurt and dominated disabled people… When they thought they were supporting the client’s goals, it could be said that they were in collusion with cultural pressures to be normal.”
Mental health service providers need to recognize that they can learn a great deal about cultural issues from their clients . However, serious ethical concerns surface when women with disabilities are asked or required to “educate” mental health service providers about basic disability issues during paid counseling time (O’Toole, 2000). Therapists need to be able integrate into the therapeutic process new discoveries about personal, professional and political factors that affect the lives of clients (Olkin, 1999). Mental health providers who avoid discussing issues associated with disability or sexual orientation send a powerful social message that being a disabled lesbian is a taboo or shameful aspect of the client’s life. The American Psychological Association [APA] (1999) and the National Clearinghouse for Alcohol and Drug Information (Center for Substance Abuse Treatment, 1998, 2001) have published specific guidelines for mental health professionals who provide clinical services to certain underserved groups, including people with disabilities and the LGBT community. These guidelines recognize that lesbians with disabilities experience a wide range of challenges associated with both disability and sexual orientation.
Access and Barriers
Attitudinal access is reflection of policy and of individual staff members who are responsible for providing services (APA, 1999; Brownworth & Raffo, 1999; Olkin, 1999; O’Toole, 2000; SARDI, 2001). Do mental health providers have the knowledge and skills to make lesbians and women with disabilities feel understood, safe, and welcome. If not, what needs to happen to change this? Asking these basic questions can help mental health providers evaluate their cultural competence. Potential strategies for improving cultural competence include reading about lesbians with disabilities; discussing issues important for lesbians with disabilities; getting consultation from lesbians with disabilities; making a personal commitment to learn more about the needs of lesbians with disabilities.
Policy service barriers are entrenched in the assumption that what works for a “normal” person is what’s best for all people. Examples of how assumptions become barriers include the requirement that personnel have a driver’s license (when what they really need is to be able to get to clients’ homes); that clients must be seen only in the agency’s offices (which may have specific physical or psychological barriers); lack of appropriate fee adjustments (or sliding scales that do not allow for the inclusion of disability-related expenses such as special transportation); and lack of funding for basic accessibility needs (e.g., sign language interpreters, ramps). Related barriers include the lack of information about disabled or lesbian clients; lack of knowledge by outreach staff; lack of written or electronic materials in accessible formats (e.g., Braille, large print, accessible websites);  and inaccessible consent forms (i.e. not easily or independently accessed and understood by the person receiving services). Although staff may feel uncomfortable asking clients directly about access issues, avoiding such discussions may perpetuate the belief that lesbians with disabilities are unwelcome in community mental health centers.
This paper has raised more questions than answers about the mental health needs of lesbians with disabilities. However, because of strong grassroots efforts in the past 25 years, lesbians and women with disabilities have become increasingly visible to each other, and to the lesbian and disability communities. Increased visbility created new views and ideas about women’s mental health. The proposed draft of the World Health Organization’s new ICIDH-2, (2001) includes components of health and well-being based on body functions and structures, and on activities and participation. Functioning, as defined in this report, is a dynamic interaction between health conditions and environmental factors which facilitate or hinder the impact of the physical, social and attitudinal world. This greater recognition of “contextual” aspects of disability reflects an encouraging shift in policy paradigms and an increasing awareness of sociocultural and environmental aspects of health and well-being.
Currently the APA (1999) formally recognizes disability issues in a set of guidelines for serving a diverse LGBT community, and mental health practitioners are writing about services for people with disability and other diverse identities. In addition, a few researchers are beginning to investigate the intersections of lesbian and disability identities and experiences in their work. Cultural events also reflect this trend – sign-language interpreters and wheelchair seating have been common since the mid-1970’s. For example, the Michigan Women’s Music Festival has a disabled resource area (DART) and has made a concerted effort to include disabled lesbian performers. In her report of a recent study on disabled lesbians in relationships Axtell (1999) writes:
“Participants described their community affiliations variously, but almost all seemed concerned with building communities… where they could be their whole selves. They described their community membership broadly including neighborhood, workplace, religious, ethnic, as well as disability and lesbian and bi women’s communities. They described many factors that influence their participation in and identity with their communities. Structural barriers like lack of wheelchair accessibility, lack of childcare, and insensitive scheduling of events, as well as classist, ableist, and homophobic attitudes were among the factors described. This suggests that in facilitating the development of collective identity, community activists and cultural workers must remain mindful of the multiplicity of communities to which any one person belongs.” (Axtell 1999, p.70)
National and international health research agendas and policies are beginning to change. In the United States, Healthy People 2010 (U.S. Department of Health and Human Services, 2000) includes a section on disability and secondary conditions that outline specific objectives that address depression, emotional support, life satisfaction, social participation, environmental barriers, and accessibility. Unfortunately, the unique concerns of lesbian, gay, bisexual and transgendered (LGBT) people are not formally recognized, and no comparable overarching goal or set of objectives was identified. In response to this omission, LGBT health organizations, including the Gay and Lesbian Medical Association (GLMA), developed the landmark Healthy People 2010 Companion Document for LGBT Health (2001). This document contains specific sections on mental health and mental disorders (GLMA 2001).
As important as these developments are, they are not enough. For example, we are unable to reliably estimate the number of disabled lesbians in the U.S. or in other countries.
Much of the available published material on disabled lesbians consists of anecdotal or personal accounts such as public letters from disabled lesbians or ethnographic interviews – rich information that is often ignored by researchers. Researchers are in a unique position to advocate for lesbians with disabilities by conducting studies that integrate the voices and experiences of lesbians with disabilities and what is known from existing research. Investigators need to learn how to build their research studies from within, rather than apart from pre-existing community mental health and consumer networks. Studies on surviving multiple oppressions and on culturally specific barriers are still needed. More research is needed that focuses on self- esteem, multiple identities and social stigma, depression, stress, suicide, abuse and violence, substance use and abuse, and relationships of disabled lesbians.
Studying lesbians with disabilities can create new ideas that enliven research and challenge investigators to create new paradigms. Studying disabled lesbians offers many exciting opportunities – to examine multiple identity communities, to bring together seemingly disparate fields of scholarship, and to create a base for further research. As the knowledge base continues to grow, training and dissemination programs can be designed to target service providers who work with the LGBT or disability communities, as well as consumers and advocates. Existing programs can be modified to incorporate new information to increase access to needed services. Scholarly communities can encourage and invite researchers, community organizers, service agencies, policy makers, advocates and lesbians with disabilities to participate in collaborative mental health conferences and agendas. More research that focuses on lesbians and women with disabilities needs to be conceived not only in reference to, or in comparison with, the “norm,” but in reference to themselves and the diversity within their own communities. Finally, the mental health community needs to recognize that the recommendations here reflect most, if not all, of the same issues shared by all women.
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