Yet those interested in understanding the social phenomenon known as mental retardation and reversing the historical pattern have yet to find a comfortable intellectual and academic home. On the one hand, special education, vocational rehabilitation, and other helping professions are dedicated to treating or “fixing” what is presumably wrong with the mentally retarded. Even humanistic approaches in these fields are based on a belief in the objective existence of mental retardation. On the other hand, it has not always been clear whether people labelled mentally retarded can fit under the broad umbrella of the disability rights movement and Disability Studies as an area of inquiry.
In this brief article, I argue that the study of mental retardation, as a social and cultural construct, belongs in Disability Studies and demonstrate how many of the principles associated with Disability Studies can be applied to the study of mental retardation. At the conclusion of this article, we provide an annotated bibliography of selected books and articles that can serve as a foundation for inquiries in this area.
The perspectives and experiences of people labelled mentally retarded must provide a starting point for all research and inquiries in the study of mental retardation. Consistent with a Disability Studies perspective, studies must focus on how people tagged as mentally retarded view and experience their worlds. In contrast to people with disabilities such as deafness, blindness, or mobility impairments, many of those labelled mentally retarded cannot easily communicate their views. From a Disability Studies perspective, this becomes a problem to be solved–how can we understand their subjective experience?–rather than grounds for dismissing their points of view.
Mental retardation is a social construct and cultural artifact. This is not the place to provide a critical review of efforts to measure the illusive concept we call intelligence or to explain how mental retardation has been reified. Selections in the following annotated bibliography address these issues in depth. Suffice to say: of course, there are differences among people in intellectual ability, but this does not prove the objective existence of the construct of mental retardation or the utility of dividing humanity into two groups–the retarded and non-retarded. Who is or is not considered mentally retarded hinges on arbitrary and professionally controlled definitions and classification procedures. The construct of mental retardation exists in the minds of those who label other persons, and not those so labelled.
People labelled mentally retarded represent a minority group. The category of people labelled mentally retarded represent an historically powerless and discriminated-against minority group. The minority group model associated with Disability Studies generally (Hahn, 1987; Linton, 1994) applies equally well to people with this label.
That said, the concepts of a disability culture and a disabled identity are foreign to people labelled mentally retarded. If the starting point for inquiries into the disability experience is the point of view of disabled persons themselves, then we must take seriously the perspectives of people defined as mentally retarded. For people labelled as mentally retarded, the concept of culture carries negative meanings. One meaning associated with culture is the professional construct of cultural-familial retardation, a construct rooted in the Eugenics movement and used to justify sterilization and other policies designed to prevent the spread of feeblemindedness. Another meaning of culture is Goffman’s (1961) notion of the subterranean life of inmates of total institutions. In this latter sense, people labelled retarded may be said to share a distinctive culture to the extent that they have been forcibly removed from their families and communities and subjected to the routines of various forms of total institutions and human service settings.
Whereas many leaders of the disability rights movement claim pride in an identity as a disabled person, representatives of the growing “self-advocacy” movement reject the mentally retarded tag and insist on being defined as “people first.” What draws people labelled mentally retarded together is a recognition of their oppression and determination to oppose how they have been defined and treated in society. Coming together represents an affirmation and celebration of common humanity.
The important role that family members play in the lives of people labelled mentally retarded must be recognized. For various reasons–some legitimate and some not, parents and other family members are influential in the lives of children and adults labelled mentally retarded. Scholarship in this area includes inquiries into the views and experiences of families of people with the mental retardation label. It should go without saying that the voices of family members cannot be regarded as a substitute for the voices of labelled people themselves.
Inquiries into the social, cultural, political, and economic situation of people labelled mentally retarded must be grounded in concepts and philosophies associated with Disability Studies generally. The classics and the heroes guiding Disability Studies can also guide those wishing to understand and change the situation of people labelled mentally retarded. The point of studies in this area is not to establish a separate field of inquiry, but to explore how people labelled as mentally retarded can be included in broader discussions of such issues as disability, gender, race, culture, and class.
This raises the interesting and challenging question of who should speak for people labelled mentally retarded in academic and scholarly circles. Should the voices of members of other groups who have faced societal prejudice and discrimination be privileged? Or should we listen to parents and family members of people labelled mentally retarded and especially those defined as severely disabled? Should long-term allies and advocates of people defined as mentally retarded lead the way? Each of these groups can play an important role in studies in this area.
Consistent with a Disability Studies perspective, however, people labelled mentally retarded must be permitted to speak for themselves. The culture of academe, with its emphasis on literacy and intellectual skills, poses obstacles to the participation of people so labelled in research and training in this area. A culture that evaluates students by their SAT or GRE scores hardly presents a welcoming environment for those with a substandard IQ. Herein lies the challenge for those of us concerned with understanding this social and cultural phenomenon. We must find creative ways of involving people labelled mentally retarded in our work, whether through oral histories and autobiographies, jointly authored articles, guest lectures and presentations, or professional staff appointments at research and training centers.
Above all, we must stay close to the reality and experience of those we seek to understand.
REFERENCES
Goffman, E. (1961). Asylums. Garden City, NY: Doubleday.
Hahn, H. (1987). Advertising the acceptably employable image: Disability and capitalism. Policy Studies Journal, 15(3), 551-570.
Linton, S. (1994). Disability Studies vs. disability policy studies. Disability Studies Quarterly, 14(2), 23-26.
See also the Selected Annotated Bibliography on Disability Studies and Mental Retardation