Journal of Social Work in Disability & Rehabilitation

Journal of Social Work in Disability & Rehabilitation

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Journal of Social Work in Disability & Rehabilitation

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Disability Controversies: Past, Present, and Future

Romel W. Mackelprang

To cite this article: Romel W. Mackelprang (2010) Disability Controversies: Past, Present, and Future, Journal of Social Work in Disability & Rehabilitation, 9:2-3, 87-98, DOI: 10.1080/1536710X.2010.493475

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Disability Controversies: Past, Present, and Future

ROMEL W. MACKELPRANG School of Social Work, Center for Disability Studies and Universal Access,

Eastern Washington University, Cheney, Washington, USA

This article addresses issues and controversies involving social work and disability. Historic and contemporary disability perceptions and roles are considered. Definitions of disability and disability language are discussed. The place of disability and disabled persons within the National Association of Social Workers and Council on Social Work Education are explored. Social work practice issues are addressed and the futures of disability and disabled people are considered.

KEYWORDS disability, disability controversies, disability defini- tions, disability models, language

This special issue of Journal of Social Work in Disability & Rehabilitation, devoted to disability controversies, is extremely salient. The profession—as well as society in general—have grappled with disability and place of per- sons with disabilities and disabled people since the beginning of recorded history. The last three decades have been a time of transition and con- fusion as social work has struggled to define and redefine disability in society and within the profession. This article provides an overview of some of the controversial issues in disability in social work. Social work’s conundrums mirror larger societal controversies. This article addresses con- temporary controversies facing the profession. It is not intended to be an exhaustive exposé but it addresses some of the major issues facing the profession.

Address correspondence to Romel W. Mackelprang, Professor, Social Work and Director, Center for Disability Studies and Universal Access, Eastern Washington University, 121 Senior Hall, Cheney, WA 99004, USA. E-mail: rmackelprang@ewu.edu

Journal of Social Work in Disability & Rehabilitation, 9:87–98, 2010 Copyright # Taylor & Francis Group, LLC ISSN: 1536-710X print=1536-7118 online DOI: 10.1080/1536710X.2010.493475

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DEFINING DISABILITY

How Are Disabled People as a Group Viewed and Treated by Social Work?

A discussion of disability as a controversial issue begins with disability defi- nitions. Disability theorists and historians have identified three historical and contemporary societal approaches to disability. The moral model, which has been prevalent through much of recorded history, defines people with disabilities by their deficiencies. Within the moral model, the place of disability in society varies and includes explanations such as dis- ability is a manifestation of sin or of God’s displeasure, a test or challenge for nondisabled people, an opportunity for nondisabled people to achieve salvation through serving disabled people, and an aberration in nature’s harmony (Albrecht, 1992; Arneil, 2009; Longmore, 2003; Mackelprang & Salsgiver, 2009). Charity and ostracization are typical mechanisms used to assist and to control people ‘‘afflicted’’ with disabilities.

With the Renaissance, the medical model emerged that ascribes scien- tific explanations to the deficiencies of people with disabilities. The medical model eschews moral model explanations, but keeps people with disabilities dependent on society for charity and care. Health and human services pro- fessionals are employed to ameliorate or cure symptoms and problems (DePoy & Gilson, 2004; Foucault, 2006). They also control resources distrib- uted to disabled patients or clients. In job roles such as case manager, profes- sionals are the managers and decision makers for their clients and patients who are relegated to the role of a case to be managed (Mackelprang & Salsgiver, 2009).

In both the moral and medical models, disabled people are expected to be subservient and to rely on charity. In stark contrast, the social model of dis- ability has arisen within the last generation. A basic premise of this model is that the majority of problems with disabled persons arise as a result of external factors such as discrimination and devaluation. Disability and disabled people are contributors to the diverse tapestry of society and have the right to self-determination (DeJong, 1979; Groce, 2005; Snyder & Mitchell, 2006).

Social work has traditionally employed the medical model of disability. Social workers provide services to disabled ‘‘patients’’ and ‘‘clients’’ in set- tings such as hospitals and other health organizations, mental health agen- cies, and other social service organizations. Concomitantly, disabled social workers are few and far between. One study of accredited programs of the Council on Social Work Education (CSWE) revealed that 2% of master’s in social work (MSW) students and 0.4% of doctoral students have disabilities (Mackelprang, Ray, & Hernandez-Peck, 1996). These data suggest that people with disabilities are significantly underrepresented in the profession and that social workers with disabilities are ‘‘closeted’’ about their disabilities.

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The preceding discussion begs the question of how social work should treat disability and people who have disabilities. Traditionally, the profession has viewed disabled people as an at-risk population along with others such as people in poverty, racial and ethnic minorities, women, and lesbian, gay, bisexual and transgender (LGBT) populations. Because they are at risk in society, these are populations that are most likely to be served by social workers. However, in defining diverse groups that the profession embraces as members and leaders, disabled people have not been embraced as have people from the other at-risk populations (Gilson, DePoy, & MacDuffie, 2002). Therefore the profession is faced with the conundrum of whether or not to embrace and fully integrate disabled people into the diverse tap- estry of its membership and even its leadership. Or, does social work prim- arily treat the disability community as an at-risk group in need of its services but not as a diverse group it embraces within its membership? The answer lies, in part, in whether social work embraces the medical model in which disabled people’s problems are primarily a result of individual pathology or a result of ableism, devaluation, and lack of opportunity.

LANGUAGE AS A DISABILITY DESCRIPTOR

What Language and Terminology Should Be Used to Describe Disability and People Who Have Disabilities?

Given the competing models already described, an emerging controversy in social work is the proper use of language as a disability descriptor. Morris (2001) argues that language is key to understanding and that disabled per- sons have been extensively subjected to the insidious power of negative lan- guage. Since the 1980s, common practice has been to refer to people with disabilities using person-first language. People are referred to as persons with disabilities or persons with deafness rather than disabled persons or deaf people. Person-first language arose, in large measure, as a challenge to medi- cal and moral model beliefs that define by their disabilities. This has been an important mechanism to redefine disability and embrace people with disabil- ities as ‘‘people first.’’ However, language is slowly evolving and, arguably, person-first language also implicitly defines disability as innately pathologi- cal. Consider, for example, person-first language to describe other character- istics. One does not call a woman a ‘‘person with femaleness,’’ an African American as a ‘‘person with Blackness,’’ or gay individuals as a ‘‘man with gayness,’’ or a ‘‘woman with lesbianism.’’ Thus, disabled people who embrace the social model of disability are increasingly adopting disability as an identity characteristic that is embraced, therefore, using disability-first language as in ‘‘disabled person.’’ Capitalizing Disability or disAbility in cultural contexts is borrowed from a long-standing practice within Deaf

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culture, a unique subculture of a larger Disability culture. American Deaf cul- turalists differentiate Deaf American Culture (DAC) from Mainstream Ameri- can Culture (MAC). People who belong to Deaf culture in which American Sign Language is the primary language commonly capitalize Deaf when referring to Deaf culture and to Deaf people as part of that culture (Wilcox, 1989). Some Disability advocates who embrace the idea of a culture of dis- ability capitalize the D in Disability when referring to Disability culture, and others use the moniker disAbility, thus emphasizing Ability.

Language use can present a conundrum for social workers, including some social work scholars who adopt a social model approach to disability, embrace disability as an identity, and adopt disability-first language. For example, some social workers, steeped in person-first language as politically correct language, might interpret disability-first language by colleagues as offensive. For social work authors, peer-review journal panelists might reject disability-first usage in an attempt to avoid pejorative language. Ironi- cally, strict adherence to person-first language might limit progressive dialogue relative to disability.

One approach to disability terminology is to use language that is context specific. Disability-first language can be used to discuss disabled people and the disability community. When referring to Disability culture, Disability or disAbility might be used. Person-first language might also be used in some contexts, especially in some social work settings. For example, people who seek health care or social services might be referred to as persons with schizophrenia or individuals with multiple sclerosis. Finally, as a component of culturally competent practice, social workers who are unclear about appropriate terminology should inquire of the people with whom they are working for clarification (Mackelprang & Salsgiver, 2009).

THE COUNCIL ON SOCIAL WORK EDUCATION AND THE NATIONAL ASSOCIATION OF SOCIAL

WORKERS AND DISABILITY

What Is the Place of Disability Within Social Work’s Professional Organizations?

Uncertainties relative to evolving disability definitions and language have affected social work’s two primary professional organizations, the CSWE and the National Association of Social Workers (NASW). From the 1980s to the present, the place of disability and disabled persons in the social work profession has been evolving and producing significant controversy. The CSWE (1992) Curriculum Policy Statement (CPS) provided curriculum organizing guidelines. One such option provided for programs to organize curricula according to population groups such as race, ethnicity, or women.

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Alternatively, programs could organize according to problem areas that included racism, sexism, and disability. Unlike other ‘‘vulnerable groups’’ in which problems such as racism or sexism were identified, disability and disabled people rather than ableism were defined as the problem area. The 1992 CPS placed disabled people outside social work’s diversity umbrella while clearly embracing them in their roles as clients and patients. The CSWE (1994) Handbook of Accreditation displays similar ambivalence and the Education Policy and Accreditation Standards (CSWE, 2001) nearly omitted discussion of disability. As Gilson et al. (2002) stated:

It is of great concern that disability in social work curricula is primarily presented and examined through a diagnostic lens, not only because of the current academic trends towards pluralism, but because of the fundamental commitment of social work to eradicating oppression and disenfranchisement, promoting equal opportunity, and advancing self-determination. (p. 3)

In the early 1990s, an informal Task Force on Disability was created that was subsequently afforded official sanction by CSWE. In 1996, CSWE created the Commission on Disability and Persons with Disabilities (CDPD). The CDPD joined CSWE’s three long-standing diversity commissions on women, race and ethnicity, and sexual orientation and identity. Creation of the CDPD heralded CSWE’s first formal acknowledgment of disability as diversity. Later, CSWE bylaw changes replaced the four distinct diversity commissions with a single diversity commission, with the four former diver- sity commissions organized into distinct councils under the overarching diversity commission.

In recent years, CSWE has begun seeking disabled social workers in leadership positions and as members of its commission. Further, the CSWE (2008) Educational Policy and Accreditation Standards departs from previous CSWE curriculum and accreditations standards by including disability in its diversity framework, stating:

The dimensions of diversity are understood as the intersectionality of multiple factors including age, class, color, culture, disability, ethnicity, gender, gender identity and expression, immigration status, political ideology, race, religion, sex, and sexual orientation. Social workers appreciate that, as a consequence of difference, a person’s life experi- ences may include oppression, poverty, marginalization, and alienation as well as privilege, power, and acclaim. (pp. 4–5)

CSWE’s recognition of disability as diversity has evolved significantly over the last two decades. The NASW has been slower to embrace disabled persons, disability as diversity, and Disability culture. Its publications often use a medical model rather than a social model to address disability. For at

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least a decade, disabled social workers have advocated for the NASW Board of Directors to apply a diversity-based approach to disability. Yet, the NASW Diversity and Equity Web site (NASW, 2009a) embraces sex, race and eth- nicity, and sexual orientation, but not disability as diversity characteristics. NASW supports commissions on sex, race and ethnicity, and sexual orien- tation, but disability continues to be absent.

The NASW (2008) Code of Ethics addresses disability stating, ‘‘social workers should not practice, condone, facilitate, or collaborate with any form of discrimination on the basis of race, ethnicity, national origin, color, sex, sexual orientation, age, marital status, political belief, religion, or mental or physical disability (4.0.2., italics added). The designation of ‘‘mental or physi- cal disability’’ is a term rejected by disability advocates, including the former CSWE Disability Commission. It medicalizes disability into two diagnostic categories rather than as an identity or characteristic. It addresses limited dis- ability subgroups while excluding others such as those with hearing, visual, and cognitive disabilities. It falsely distinguishes between mental and physi- cal characteristics, although the two are highly interrelated. NASW (2006) demonstrates indecisiveness in its Cultural Competence Indicators. It repeat- edly uses terms such as ‘‘physical or mental disability.’’ One section excludes disabled people from its definition of cultural competence; replacing dis- ability with the euphemism ‘‘physical and mental abilities’’ (NASW, 2006, p. 8). The 1992 CSWE disability task force soundly rejected this terminology when CSWE proposed to include it in its curriculum and accreditation documents.

On a positive note, a different section of the Indicators document states, ‘‘The term culture includes ways in which people with disabilities or people from various religious backgrounds or people who are gay, lesbian, or trans- gender experience the world around them’’ (NASW, 2006, p. 10). The latest Social Work Speaks (NASW, 2009b) offers the most inclusive approach to dis- ability to date in that it, ‘‘advocates a national policy that ensures the rights of people with disabilities to participate fully and equitably in society’’ (p. 249), and ‘‘the inclusion of social workers with disabilities in all areas of the professional organization’’ (p. 250).

In summary, the third controversial issue addressed in this article, the place of disability in social work’s professional organizations, is evolving. Disability advocates, Disabled social workers, and allies advocate for fully integrating disability into the diversity framework of the profession. NASW continues to define disability as an at-risk group but displays ambivalence about embracing disabled persons and the disability community as a diverse population within the profession. In contrast, CSWE has made strides toward adopting a social model of disability and welcoming disabled educators into its structures and leadership.

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SOCIAL WORK PRACTICE AND DISABILITY

How Should Social Work Practitioners Approach Work With Disabled People and Groups?

HOW CAN SOCIAL WORKERS INCORPORATE CIVIL RIGHTS APPROACHES TO DISABILITY?

Historically, social workers have worked in settings such as social services, child welfare, mental health, residential institutions, hospitals, and criminal justice. Organizational and public policies in employing organizations demand hierarchical relationships with professionals as decision makers and controllers of resources. Further, the behaviors of clients and patients in some of these settings justify the need for social workers to be the agents of social control. At-risk populations identified by NASW such as African Americans and disabled Americans are among the populations most likely to be involved in these organizations of social control. Yet, although NASW actively condemns racism, it is relatively quiet about ableism that places disabled people at risk.

As a case in point, consider the disproportionate rates at which Blacks and Disabled people are placed in foster care. For example, a U.S. Govern- ment Accountability Office (2007) study found that African American youth represented 15% of the total youth population; however, they represented 34% of the foster care population. Reasons given for these disproportionate numbers included poverty, lack of access to resources, cultural misunder- standings, and distrust. The social work profession has been active in fighting against racism and discrimination, which contribute to high rates of foster care placement.

A National Council on Disability (2008) report on disabled children found that they are also highly overrepresented in the foster care system. Further, once in the system, disabled youth are at greater risk of mistreatment and other problems than nondisabled youth. The National Council on Disability report concluded that African American youth and disabled youth faced similar problems leading to foster care placement, treatment in foster care, and transition out of foster care.

Although social work utilizes a civil rights approach for at-risk ethnic groups such as African American youth in foster care, the profession has not addressed issues such as foster care discrepancies as a Disability rights issue. Problems facing African American and disabled youth in foster care should be addressed as care and treatment concerns. In addition, problems facing disabled youth in foster care should be treated as civil rights and class discrepancies in the same way as they are addressed with African Americans.

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ARE INDEPENDENT LIVING PHILOSOPHY AND APPROACHES CONSONANT WITH SOCIAL WORK VALUES AND PRACTICE AND, IF SO, HOW CAN SOCIAL

WORKERS BE PREPARED TO WORK IN INDEPENDENT LIVING?

The independent living (IL) movement began as disabled people like Justin Dart, Ed Roberts, and Judy Heumann, who had been denied education, jobs, and access to society’s other resources began demanding rights and organiz- ing to advocate for full inclusion in society. In the early 1980s the federal government began funding Centers for Independent Living (CILs) with the mandate that their boards and administrative staff must consist of a minimum of 51% disabled persons (Shapiro, 1994). Contemporarily, multiple CILs exist as nonprofit organizations in every state. In addition, every state is mandated to have a State Independent Living Council that oversees strategic disability planning for each state in collaboration with CILs.

IL and CILs began as a grassroots rebellion against social policies; health, education, and social service organizations; as well as the health, edu- cation, and social service professions running organizations and implement- ing social policy. IL eschews hierarchically based approaches such as case management. Providers of IL services are perceived as co-equals serving ‘‘participants’’ who determine their needs and services with the assistance of IL staff. There are no clients or patients in IL; participants have the ultimate say and direct how and with what help they are provided.

Traditionally, IL and social work employ different approaches and philosophy to practice, however, social work and IL share commonalities that, arguably, complement each other (Mackelprang & Salsgiver, 1996, 2009). Cardinal social work values such as individual worth and dignity, self-determination, and unconditional positive regard strike a harmonious cord within the IL movement. However, relationships are nonexistent between social work and IL organizations such as the National Council on Independent Living and the Association of Programs in Rural Independent Living. Within academia, social work education and disability studies have little in common.

The extent to which the social work profession embraces Disability as diversity and as a civil rights issue will influence the legitimacy of disability organizations such as CILs as sanctioned social work venues. Social work educators will need to determine whether IL and social work have enough in common to educate for IL work, including providing practicum experi- ences for bachelor’s and master’s social work students. Increasingly, social workers are being lured to work in CILs and employ IL approaches to practice. If social work and social work education embrace disability as diversity and IL as a valid approach to social work, then educators need to arm themselves with an understanding of disability community, Disability culture, and IL philosophy and approaches to human service work. This will require social work field faculty to familiarize themselves

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with IL so they can determine the fit between students and CIL practicum placements. In addition, classroom faculty will need to educate about IL as a practice modality. Concomitantly, NASW and state chapters will need to grapple with the place of disability organizations and their employees who have been educated as social workers. The connection between social work and IL has been slowly evolving from the beginning of the IL move- ment and will likely continue for years to come.

TO WHAT EXTENT WILL DISABILITY RIGHTS INFLUENCE THE SOCIAL WORK DISCOURSE RELATIVE TO CONTROVERSIAL ISSUES?

The extent to which social workers embrace the social model of disability and disability rights will significantly affect policies and practices concerning controversial issues. End of life policies and decisions illustrate.

The official NASW policy on end-of-life decisions states:

End-of-life decisions encompass a broad range of medical, spiritual, and psychosocial determinations that each individual should make before the end of her or his life. End-of-life issues are recognized as complex because they reflect the varied value systems of different populations. NASW does not take a position concerning the morality of end-of-life decisions, but affirms the right of any individual to direct his or her care wishes at the end of life. (NASW, 2009b)

NASW affirms the right of people to direct decisions at the end of life, including in the states of Oregon and Washington that allow for assisted sui- cide for people with terminal illness. However, social work’s affirmation of this right has limitations. For example, the profession has been actively involved in suicide prevention, especially with youth, and it does not advo- cate for nonterminally ill people’s choice to end their lives. However, the profession has remained silent on the practice of physically disabled persons ending their lives. For example, in 1989, two young men, David Rivlin of Michigan and Larry McAfee of Georgia, successfully sued the courts for the right to end their lives. Both men had ventilator-dependent quadriplegia and had been incarcerated in nursing facilities for years. In both cases the courts determined that their physical conditions justified their decisions to end their lives. In neither instance, nor in subsequent cases, have the courts considered their unbearable living conditions in their decisions. People with severe physical disabilities like Rivlin and McAfee are routinely incarcerated in institutions, even though their physical care would be less expensive and more humane if provided in the community. Rivlin completed his request by having his ventilator turned off; however disability activists in Atlanta arranged for McAfee to live in the community with physical attendant care. Rivlin subsequently moved to the community and did not end his life (Mackelprang & Mackelprang, 2005; Shapiro, 1994).

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The IL community and other disability rights advocates view end-of-life decisions as human rights issues. They protest against and work to change the discriminatory public policies and practices that keep disabled people in institutions and dependent on others. In contrast, social work has remained silent on end-of-life cases such as those of Rivlin and McAfee. If social work adopts the social model of disability and embraces disabled per- sons within a diversity framework, the profession will be forced to address disability issues as a civil rights matter. Silence will not be a responsible option. Alternatively, the profession might choose the status quo.

CONCLUSIONS

What Is the Future for Disabled Social Workers and Their Allies?

In the late 1980s, the author, as a young educator attempting to develop a scholarly agenda and achieve tenure, submitted an article to an NASW jour- nal on including disabled persons in the social work profession. The article was rejected with one reviewer’s comments, stating, ‘‘Reject, reject, reject, do you really think we want those people in our profession?’’ The lesson learned from this experience for disabled social work academics with invisible dis- abilities was to remain securely in the closet. For social work educators with visible disabilities, the message was to minimize the impact of the disability to the extent possible. Subsequently, as discussed in this article, social work educators organized and have been instrumental in changing disability atti- tudes within the profession. Social workers with disabilities have become active in promoting disability rights, and embracing the experiences that their disability affords them. For example, one of the author’s colleagues with a physical disability from birth expresses his gratitude for his disability and how it led him to his chosen profession, his life partner, and his life. Mackelprang and Salsgiver (2009) provided numerous life stories of disabled men and women who embrace their disabilities and revel in disability com- munity and Disability culture. The profession, and especially CSWE, have made strides in accepting the social model of disability. However, the social model of disability is still far from being universally accepted as evidenced by the current ‘‘fact sheet’’ item published by NASW: ‘‘Social workers help people overcome some of life’s most difficult challenges: poverty, discrimi- nation, abuse, addiction, physical illness, divorce, loss, unemployment, educational problems, disability, and mental illness’’ (NASW, 2010).

Disabled social workers and allies who adopt a social model of disability reject this NASW characterization of disability as one of life’s most difficult challenges. Although many do not suggest that ‘‘pathology be totally removed from an examination of disability’’ (Gilson et al., 2002, p. 3), they aver that the primary challenges disabled social workers, including those with mental health disabilities, need to ‘‘overcome’’ are externally imposed

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and include discrimination, poverty, abuse, unemployment, and educational discrimination. In contrast, this NASW fact sheet contends that disability itself is one of life’s most difficult challenges. Just as the primary challenges facing Blacks, women, and gays are externally derived, adherents to the social model of disability contend that external factors, not individual pathology, are the most difficult challenges disabled people face in society and in the social work profession.

In summary, the place of disability and disabled people in social work is a continually evolving process. For generations, disabled people have been the clients and patients of social workers, and they will continue to be patients and clients in the foreseeable future. Along with racially and ethnically diverse groups, women, and LGTBs, they are firmly ensconced as an at-risk group that benefits from the attention and interventions of social workers. Whereas racially and ethnically diverse groups, women, and LGTBs are also embraced as diverse populations, disabled people have not been universally considered as such. Social model adherents look forward to the day that disabled social workers are fully embraced in the profession. The extent to which this occurs will be an ongoing controversy in the years to come.

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