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Journal of Social Work in Disability &


Rehabilitation
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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
Version of record first published: 18 Aug 2010.

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
To link to this article: http://dx.doi.org/10.1080/1536710X.2010.493475

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Journal of Social Work in Disability & Rehabilitation, 9:8798, 2010


Copyright # Taylor & Francis Group, LLC
ISSN: 1536-710X print=1536-7118 online
DOI: 10.1080/1536710X.2010.493475

Disability Controversies: Past, Present,


and Future
ROMEL W. MACKELPRANG

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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 definitions, disability models, language

This special issue of Journal of Social Work in Disability & Rehabilitation,


devoted to disability controversies, is extremely salient. The professionas
well as society in generalhave grappled with disability and place of persons with disabilities and disabled people since the beginning of recorded
history. The last three decades have been a time of transition and confusion 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 works
conundrums mirror larger societal controversies. This article addresses contemporary controversies facing the profession. It is not intended to be an
exhaustive expose 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
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R. W. Mackelprang

DEFINING DISABILITY

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How Are Disabled People as a Group Viewed and Treated by


Social Work?
A discussion of disability as a controversial issue begins with disability definitions. 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 disability is a manifestation of sin or of Gods displeasure, a test or challenge
for nondisabled people, an opportunity for nondisabled people to achieve
salvation through serving disabled people, and an aberration in natures
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 scientific 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 professionals are employed to ameliorate or cure symptoms and problems
(DePoy & Gilson, 2004; Foucault, 2006). They also control resources distributed to disabled patients or clients. In job roles such as case manager, professionals 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 disability 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 settings such as hospitals and other health organizations, mental health agencies, 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 masters 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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89

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 tapestry of its membership and even its leadership. Or, does social work primarily 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 peoples 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 persons have been extensively subjected to the insidious power of negative language. 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 medical and moral model beliefs that define by their disabilities. This has been an
important mechanism to redefine disability and embrace people with disabilities as people first. However, language is slowly evolving and, arguably,
person-first language also implicitly defines disability as innately pathological. Consider, for example, person-first language to describe other characteristics. 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 culturalists differentiate Deaf American Culture (DAC) from Mainstream American 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 disability 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. Ironically, 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 Works
Professional Organizations?
Uncertainties relative to evolving disability definitions and language have
affected social works 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 works 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 CSWEs three long-standing diversity commissions on
women, race and ethnicity, and sexual orientation and identity. Creation
of the CDPD heralded CSWEs 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 diversity 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 persons life experiences may include oppression, poverty, marginalization, and alienation
as well as privilege, power, and acclaim. (pp. 45)

CSWEs 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 ethnicity, and sexual orientation, but not disability as diversity characteristics.
NASW supports commissions on sex, race and ethnicity, and sexual orientation, 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 physical 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 disability subgroups while excluding others such as those with hearing, visual,
and cognitive disabilities. It falsely distinguishes between mental and physical characteristics, although the two are highly interrelated. NASW (2006)
demonstrates indecisiveness in its Cultural Competence Indicators. It repeatedly uses terms such as physical or mental disability. One section excludes
disabled people from its definition of cultural competence; replacing disability 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 transgender experience the world around them (NASW, 2006, p. 10). The latest
Social Work Speaks (NASW, 2009b) offers the most inclusive approach to disability 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 works 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?

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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. Government 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 misunderstandings, 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 societys other resources began demanding rights and organizing 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, education, and social service professions running organizations and implementing 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 experiences for bachelors and masters 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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95

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 movement and will likely continue for years to come.

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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 suicide for people with terminal illness. However, social works affirmation of
this right has limitations. For example, the profession has been actively
involved in suicide prevention, especially with youth, and it does not advocate for nonterminally ill peoples 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 persons 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

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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 journal on including disabled persons in the social work profession. The article
was rejected with one reviewers 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 disabilities 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 attitudes 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 authors 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 community 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 lifes most difficult challenges: poverty, discrimination, 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 lifes 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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97

and include discrimination, poverty, abuse, unemployment, and educational


discrimination. In contrast, this NASW fact sheet contends that disability itself
is one of lifes 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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