EDUCATION
Disability Studies
Disability Studies: What it is and Why it is Needed?
Diane N. Bryen, Professor of Curriculum, Instruction & Technology
and Sieglinde A. Shapiro
Institute on Disabilities
An article from the Temple University Faculty Herald 25(4), February 12, 1996
U.S. Census data from 1990 indicates that 49 million Americans have some type of disability. Using the World Health Organization's (WHO) definition of disability, the 1992 "Digest of Data on Persons with Disabilities" by R. C. Ficke reports that 14.1% of the population is disabled in terms of an activity limitation and 20.6% is disabled in terms of a functional limitation. The United Nations estimates that 10% of the world population has some type of disability. Whatever statistics are adopted, it is a fairly safe assumption that individuals with disabilities constitute the largest single minority group in our nation and around the world. Yet, despite its size, the "community" of persons with disabilities remains unknown or misunderstood and experiences significant disadvantage.
According to a Louis Harris survey commissioned by the National Organization on Disability and conducted in early 1994, the majority of persons with disabilities in the U. S. are poorer, less independent, less well educated and less likely to reach their full potential than any other identifiable group, including ethnic minorities and other disadvantaged individuals. From the perspective of economics, 59% of adults with disabilities live in households with a total income of less than $25,000, and 25% report that they receive all of their personal income from benefits and insurance programs.
In the area of employment, two-thirds of working age Americans with disabilities are not working, yet eight out of ten of those individuals say they want to work. Only one in five working age adults with disabilities works full-time, while 11% work part-time. Work disincentives play a major role in keeping these individuals unemployed. Fifty-seven percent of them fear they will lose vital benefits and supports if they secure a job; 50% of current students and trainees with disabilities expect to encounter job discrimination, and 30% of disabled workers report discrimination due to their disability. For example, in 1988, workers with disabilities earned only 64% of what their nondisabled co-workers earned.
From an educational perspective, people with disabilities are faring slightly better than they have in the past but they remain far behind their nondisabled peers. A much larger percentage of them have not completed high school (25%) than those without disabilities (12%).
Finally, we find that approximately 40% of Americans with disabilities believe that things have not gotten much better for them over the past 10 years despite the passage of the Americans with Disabilities Act in 1990. People with disabilities have lower levels of satisfaction with life in general.
This is an appalling picture of waste and lack of fulfillment for millions of individuals with disabilities who live in a nation which has dedicated itself to equal rights and opportunities for all of its citizens. When viewing this picture, leaders in the educational arena should ask: "Why is this so? What are the root causes of these problems?" and most importantly "What can we do to alter this situation?"
One answer is to see that those who are being educated in our colleges and universities are provided with more information about people with disabilities and the issues and policies that concern them. The typical portrayal of individuals with disabilities is as victims of affliction who must be cured, helped to overcome their "deficiencies," cared for and pitied. The plethora of such images interspersed with rare glimpses of "extraordinary" people with disabilities who are successful in sports or other endeavors leaves most with a false image of America's disabled citizens and encourages continued oppression. Information on people with all kinds of disabilities, their cultures, their needs, issues and concerns must be infused into all areas of university study. Only then will Americans with disabilities be accorded full recognition as equals and be included in housing, transportation, places of public accommodation and recreation, educational programs and the workforce alongside their non-disabled peers.
Harlan Hahn, a political science professor at the University of Southern California states:
"Without an understanding of policy issues that shape the alternatives available to people with disabilities, persons who enter careers in the health sciences, the helping professions, and other occupations are deprived of valuable resources and a crucial context for their efforts to serve the interests and needs of this segment of the population." (1985, p. 293)
The vast majority of college students today study business and human resources management, architecture and engineering, social and political sciences, literature and the arts, broadcasting and health care delivery; however, they rarely encounter basic information regarding the single largest minority group in this country. If these students have little or no opportunity to learn more about their peers with disabilities than how to "care for" or "treat" them it is little wonder that they fail to hire, accommodate, become friends with, marry or otherwise interact with individuals with disabilities later on.
Those who choose to work in fields where they will encounter large numbers of people with disabilities, such as special education, social work, medicine or the allied health professions, receive training which is for the most part outdated, incomplete and irrelevant when it comes to anything that goes beyond the scope of the medical paradigm aimed at "fixing" the individual. The real concerns of individuals with disabilities who must make their way in a world such as the one described above, a world which includes devaluation, discrimination and environmental barriers at every turn, are rarely addressed. Vital information and resources regarding such areas as disability rights, the independent living movement, employment supports and accommodations, barrier-free design, tax incentives, policy development, assistive technology and others support programs and services remain largely unknown and under used. The disturbing consequence is that millions of people with disabilities live lives that are separate from the majority and they remain misunderstood, unemployed, undervalued, unfulfilled and unhappy.
In a seminal paper presented at the 1993 annual research meeting of the Association for Public Policy Analysis and Management, Gerben DeJong, Ph.D.; Director of the National Rehabilitation Hospital Research Center; Midlantic Research Institute on Disabilities in Washington, D. C. and a well-known expert in the disability field states:
"Over the last 20 years there has been a marked shift in our understanding of disability policy issues....attributed to the rise of the disability rights/independent living movement. The movement, led by persons with disabilities, has fundamentally redefined the problem of disability from one of deficits in the individual to one of barriers in the environment. In so doing, the movement has identified public policy as an important environmental component in the lives of disabled people. However, our academic and analytic capacities in public policy from a disability perspective remain underdeveloped. Disability policy has not been recognized as a generic policy area. We often speak of a health policy, a tax policy, a defense policy, a transportation policy, an income policy, but seldom do we speak of a 'disability policy'." (pp. 55-6)
DeJong accounts for this failure to develop a distinct disability policy area (or the study of disability issues in generic fields) by pointing to the simple fact that people with disabilities have been a devalued group in our society, with their needs and concerns relegated to governmental agencies which are largely outside the mainstream of our society. "This isolation", says DeJong, "has also found its way into the academic community. For too many years, disability issues were considered the exclusive province of rehabilitation counselor and special education programs....The purpose of these academic programs was to train rehabilitation practitioners and providers of services, not independent and critical thinkers capable of forging national and state level policy by taking into account the myriad of other programs that impact on the lives of people with disabilities" (p.56). A new approach to Disability Studies is, therefore, indicated.
Disability Studies: What it is and what it's not
Disability Studies, like African-American and Women's Studies, has its origins in the civil rights movements. It is based on the notion that, as with other oppressed groups, people with disabilities share a history, a culture, and a desire for social, political and economic self determination. Through Disability Studies, the collective voices of the disability community and allies form the content and method of instruction that can inform others. The content of Disability Studies includes history, literature, politics, sociology, law and economics. Like African-American and Women's studies, Disability Studies is designed and taught by people who, as Sara Watson (1994) states, have toiled in and with the disability community and with disability policy and/or those who have fought in the real-world disability policy trenches individually and collectively.
Potential audiences of Disability Studies are not limited to the traditional audiences or disciplines who comprise the so-called "helping" professions (e.g., health, education, social work, rehabilitation and psychology). Rather, stakeholders are a much broader group and include business, law, political science, history, economics, public policy, the arts, sociology, journalism, engineering, recreation, sports and leisure, architecture, and the disability communities, themselves.
Disability Studies is different from the more traditional course work on disabilities offered to future disability service providers, such as rehabilitation counselors or special education teachers. First, the paradigm for viewing disabilities is quite different. It considers disability as a natural part of the human condition rather than a defect or impairment that needs fixing. Second, the focus of "intervention" is paradigmatically different—"fixing" systems so that they are accessible to and usable by people with disabilities rather than fixing people so that they can better fit into existing systems. Third, stakeholders or audiences are different. They include engineers, business people, journalists, lawyers and policy makers not just teachers, doctors and social workers. Fourth, teachers and researchers continue to be the "experts." However, "experts" are expanded to include people with disabilities themselves rather than solely professionals who may know about the various medical and educational conditions that have historically defined disabilities. Finally, the outcomes of Disabilities Studies are different. They include an understanding of history, politics, economics and civil rights, not just an understanding of diagnosis, prevention, and treatment.
In sum, Disability Studies is, according to Litvak:
"..the broad reframing of disability (i.e., out of an exclusive medical dominion) as a social phenomenon and social construct with a distinctive cultural and political history (in Zola, 1994)."
Simi Linton, one of the founders of the Disability Studies Project at Hunter College expands Litvak's definition, stating that:
"Disability Studies reframes the study of disability by focusing on it as a social phenomenon, social construct, metaphor, and culture, utilizing a minority group model. It examines ideas related to disability in all forms of cultural representations throughout history, and examines the policies and practices of all societies to understand the social, rather than the physical or psychological determinants of the experience of disability. Disability Studies both emanates from and supports the disability rights movement, which advocates for civil rights and self determination. This focus shifts the emphasis away from a prevention/treatment/remediation paradigm, to a social/cultural/political paradigm (Litvak, 1994, p. 24)."
Disability Studies is not curricula for disability service provider training programs, for example curricula that is devoted to vocational rehabilitation counseling (including how to be a good counselor, the psychological aspects of disability) (Litvak, 1994). Instead, Disability Studies embodies values based on viewing the person with a disability as a survivor not a victim, and as one who is limited by social attitudes and environmental barriers rather than an inherent "defect" or "deficiency" which must be remedied.
In the words of Hahn, over the past 20 years a more inclusive conception of disability has evolved "from functional impairment to economic limitations and finally to a sociopolitical perspective. The latter understands disability as an interaction between the individual and the environment rather than something primarily within the person.... [T]heir difficulties stem fundamentally from their status as members of an oppressed minority group." (1984, p. 362) This is not what is being taught in most college classrooms.
Temple University is uniquely positioned to take the lead on including Disability Studies within its academic curricula. Temple's mission, history and focus on diversity should embrace the concept of expanding its studies to include the nation's largest minority community—individuals with disabilities. Temple also has the resources to do so. Within our academic community we have nationally-known faculty and staff from the disability community who are closely linked to the disability communities across the nation. They can be found by contacting the Office of Disability Resources and Services and the Institute on Disabilities—Pennsylvania's University Affiliated Program on Persons with Disabilities. The Disabilities Studies program at the Institute on Disabilities can help you to address disability issues and policies in your field or discipline by providing course infusion lectures, technical assistance on course development and information on speakers from the disability community.
For more information about Disability Studies and opportunities to include Disability Studies within your curriculum, contact us at 1-1356. Also, join us on March 29th between 9:30 and 12:00 for the first in a four-part Faculty Forum series on Americans with Disabilities. Nationally-known writer and author of No Pity and Senior Editor of U.S. News and World Report, Joseph P. Shapiro will be on campus to discuss "Understanding How the Disability Rights Movement Has Had an Impact on American Society." For more information about the Faculty Forum, contact Dr. Rosangela Boyd, Associate Professor of Leisure and Recreation Studies and Director of University-based Training at the Institute on Disabilities at 1-6749.
References
DeJong, G. (1994). Toward a Research and Training Capacity in Disability Policy. Disability Studies Quarterly, 14(2).
Hahn, H. (1984). Reconceptualizing Disability: A Political Science Perspective. Rehabilitation Literature, 45(11 and 12).
Hahn, H. (1985). Disability Policy and the Problem of Discrimination. American Behavioral Science, 28(3).
Litvak, S. (1994). Disability Studies vs. Disability Policy Studies. Disability Studies Quarterly, 14(2).
Watson, S. D. (1994). Building a Disability Policy Studies Discipline within the Academic Field of Public Policy. Disability Studies Quarterly, 14(2).
Zola, I. K. (1994). Shaping an Interdisciplinary Field of Disability Studies: The Perspective of Sociology. Disability Studies Quarterly, 14(2).
