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Disability Studies and the Ethics of Research on Disability
Deborah J. Gallagher
Department of Special Education
University of Northern Iowa
Presentation for the University of Northern Iowa 2009 Interdisciplinary Research
Symposium, February 13, 2009
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Over the past decade or so, educators at all levels have increasingly
turned their attention to issues of diversity and social justice. Much, if
not most, of this attention has been centered on the very crucial
concerns about race, ethnicity, gender, social class, sexual orientation,
and religious/ideological preference. Disability as a form of diversity has
arguably received less attention. Disability Studies scholar Lennard
Davis (1997) captured the persistent prejudice and discrimination
directed against people with disabilities as follows:
People with disabilities have been isolated, incarcerated, observed,
written about, operated on, instructed, implanted, regulated,
treated, institutionalized, and controlled to a degree probably
unequal to that experienced by any other minority group. As
fifteen percent of the population, people with disabilities make up
the largest physical minority within the United States. One would
never know this to be the case by looking at the literature on
minorities and discrimination. (p. 1)
A friend and close colleague of mine, Lous Heshusius (recently retired
from York University in Toronto…and previously a faculty member
here at UNI) traces the origins of this prejudice and discrimination to
what she calls our “exclusionary fears” – our need to keep a safe
distance from those who remind us of our own vulnerabilities and
threaten our ideal self-images as competent, healthy, intelligent, and
therefore “worthy” people (Heshusius, 2004). Likewise, Davis (2001)
pointed out that (and I quote),
We have created a firewall between them [disabled people] and
us. While many white people have embraced the cause of people
of color, and while many straight people have taken up the cause
of gay, lesbian, bisexual, and transgendered people, few
“normals” have resonated with people with disabilities. The
reasons for this are telling. No whites will become black; few
straights will become gay; but every normal person can become
disabled. All it takes is a swerve of a car, the impact of a football
tackle, or the tick of the clock to make this transformation…what
people fear is that disability is the identity one may become part
of but didn’t want. This is the silent threat that makes folks avoid
the subject, act awkwardly around people with a disability, and
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consequently avoid paying attention to the current backlash
against disability rights. (p. 3-4)
Intent on ameliorating this situation, the interdisciplinary field of
Disability Studies has sought to provide an alternative conceptual
framework for understanding the phenomenon we call “disability.”
Spurred on by the Disabled People’s Movement in Great Britain and
the Disability Rights Movement in the U.S., Disability Studies scholars
developed what is now referred to as the social model of disability.
Invoking a non-foundationalist epistemology and non-realist ontology,
this model takes a constructivist or interpretivist approach to
understanding disability. Thus, disability is a set of social, physical,
educational, legal, and economic restrictions imposed on people whose
differences consequently come to be understood as disabilities. The
social model does not deny that people differ from each other. Rather, it
frames these differences (physical and otherwise) as “normal” human
variation. It places a moral/ethical demand on us to “own” our
interpretations of normality and disability by asking – What kind of
differences make a difference to us, and why? It further entreats us to
address the kinds of barriers we create as a community that turn some
people’s differences into a disadvantage we then come to understand as
a disability.
Prior to the 1980s, academic interest in disability centered almost
exclusively on the medical model of disability. Like any conceptual
model, the medical model also makes certain epistemological and
ontological assumptions about the nature of disability. Specifically, its
realist epistemology frames disability as an objective condition inherent
in the individual in the form of physical, intellectual, or emotional
abnormality/pathology. Its ontological assumptions paint disability as a
“reality” separate from our beliefs, values, judgments, interpretations,
and so on. Yet there is an ethical world of difference between declaring
that a person “has a disability” and understanding that we interpret
certain differences in some people as disabilities.
Let me offer an example to illustrate how the social model prompts a
shift in our metaphors for understanding disability from one of
“discovery” to “construction” or “interpretation.” Late in the 17th
century, some early settlers of Martha’s Vineyard carried a gene for
deafness. After many generations, a significant portion of the
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population of West Tisbury and Chilmark were deaf. So commonplace
was deafness that all the residents used simultaneously a combination of
sign language and oral language. Consequently, deafness was not
conceived of as a disability given its ubiquity and the fact that because
everyone knew sign language being deaf posed no social or cultural
restrictions. It simply was not relevant; and to the extent it was noted at
all, it was understood as merely one of many ways of being in the world.
When this shift of metaphors takes place, we can no longer think in
terms of discovering one’s disability. Instead we think in terms of how a
person becomes disabled within a particular social, physical, and
historical context.
As I mentioned earlier, Disability Studies is an interdisciplinary field of
study. Currently, Disability Studies scholars can be found in academic
disciplines ranging from the arts, literature, history, sociology,
anthropology, medicine, film studies, women’s studies, and many
others. The Modern Language Association and the American
Anthropological Association have formed special interest groups in
Disability Studies for their members.
More recently, an international coalition of education scholars have
instituted the field of Disability Studies in Education. As a founding
member of this growing field, my research centers on methodological
approaches for conducting educational inquiry and, more to the point,
the ethical consequences of these approaches in the education of
students labeled as having disabilities. For example, drawing on the
philosophy of science literature, I have made the case that the debate
over inclusive education for students with disabilities cannot be resolved
by empiricist research seeking to settle the question by “scientifically”
establishing the “effectiveness” of separate versus inclusive instructional
arrangements. In the process, I have explored how the assumption of
scientific neutrality plays itself out within the debate over inclusion.
References
Davis, L. J. (Ed.) (2006) The disability studies reader. New York: Routledge.
Heshusius, L. (2004). Special education knowledges: The inevitable struggle with the
“self.” In D. J. Gallagher, L. Heshusius, R. P. Iano, & T. M. Skrtic, Challenging
orthodoxy in special education: Dissenting voices (pp. 283-309). Denver, CO:
Love Publishing.