*SELECTED ANNOTATED BIBLIOGRAPHY DISABILITY STUDIES AND MENTAL RETARDATION

Compiled by Steve Taylor and Perri Harris
Reprinted from Disability Studies Quarterly, 16(3), 4-13.

History

Blatt, B., & Kaplan, F. (1974). Christmas in purgatory: A photographic essay on mental retardation. Syracuse, NY: Human Policy Press.

This is a reprinted edition of Blatt and Kaplan’s 1966 photographic expos‚ of conditions in America’s institutions. Shot with a hidden camera, Christmas in Purgatory depicts overcrowded and dehumanizing conditions found at eight institutions in the Northeast. Blatt was one of the few professionals to speak out against institutional warehousing in the 1960s.

Bogdan, R. (1988). Freak show: Presenting human oddities for amusement and profit. Chicago: University of Chicago Press.

A social history of the depiction of “human oddities,” including people with disabilities, for amusement and profit. Freak Show is a classic study of depictions of disability in popular culture.

Ferguson, P. (1994). Abandoned to their fate: Social policy and practice toward severely retarded people in America, 1820-1920. Philadelphia: Temple University Press.

A historical study of social policy and practice toward people labelled “idiots” or “severely retarded.” Ferguson examines the problem of “chronicity” and shows how people with the most severe disabilities have been and continue to be excluded from reform movements.

Gelb, S. A. (1995). The beast in man: Degenerationism and mental retardation, 1900-1920. Mental Retardation, 33(1), 1-9.

Gelb describes the chain of scientific and theological reasoning that led to the perception of people with mental retardation as a social menace prior to the eugenics movement around the turn of the 20th century. According to degenerationism, the “feebleminded” formed a missing link between humans and lower species.

Gould, S. J. (1981). The mismeasure of man. New York: W. W. Norton & Company.

This is a history of attempts to define and measure the illusive concept of intelligence. Gould does a masterful job of demonstrating the ideological assumptions underlying psychological science.

Smith, J. D. (1985). Minds made feeble: The myth and legacy of the Kallikaks. Austin, TX: PRO-ED.

Debunking Goddard’s infamous Kallikak study that purported to show the hereditary transmission of “feeblemindedness,” Smith traces members of the Kallikak family and demonstrates how facts were twisted by the eugenicists to prove their theories.

Trent, J. W. (1994). Inventing the feeble mind: A history of mental retardation in the United States. Berkeley: University of California Press.

A sobering historical analysis of institutions and mental retardation. Arguing from a political economy perspective, Trent locates the source of abuse of people with mental retardation in the tendency to equate moral worth with economic productivity.

Wolfensberger, W. (1975). The origin and nature of our institutional models (Rev. ed.). Syracuse, NY: Human Policy Press.

This is an analysis of the development of and growth in institutions in the 19th and 20th centuries. The book examines institutionalization in terms of the ideas and philosophies of leaders in the field of mental retardation. This book contains the foundations for Wolfensberger’s influential writings about “normalization.”

Theory

Biklen, D. (1988). The myth of clinical judgment. Journal of Social Issues, 44(1), 127-140.

This article challenges the primacy of professional decision- making and argues that clinical decisions are influenced by other factors such as economics, bureaucratic exigency, politics, service traditions, and societal prejudice.

Bogdan, R., & Biklen, D. (1977). Handicapism. Social Policy, 7(4), 14-19.

The authors introduce the concept of handicapism as a way to understand disability as a social construct. They define it as a “set of assumptions and practices that promote the differential and unequal treatment of people because of apparent or assumed physical, mental, or behavioral differences.” Handicapism results in prejudice, stereotypes, and discrimination.

Dexter, L. (1994). On the politics and sociology of stupidity in our society. Mental Retardation, 32(2), 152- 155.

Dexter offers one of the first discussions of the social meaning of mental retardation. Using labeling theory and a social constructionist approach, he argues that traditional notions of mental retardation and intelligence need to be more critically examined.

Nibert, D. (1995). The political economy of developmental disability. Critical Sociology, 21(1), 59-80.

The article outlines the history of the treatment of people with disabilities from a historic materialist perspective. Framing his discussion around issues of political economy, the author argues that the experiences of people with disabilities, from work to cultural devaluation, stems from the political and economic context. He further asserts that exclusion of people with disabilities from the labor force and society, and by making them scapegoats for economic and social problems, have served to legitimate 20th century American capitalism.

Social and Cultural Studies

Bercovici, S. (1983). Barriers to normalization. Baltimore: University Park Press.

Focusing on people with mental retardation living in seven residential care facilities, Bercovici discusses how the human service system employs practices that promote dependency, passivity, fear, and incompetence for the people receiving these services. She links these problems to the larger service delivery system and to a dominant culture that oppresses and controls a subordinate group’s aspirations to achieve a normal life style.

Bogdan, R., & Taylor, S. J. (1989). Relationships with severely disabled people: The social construction of humanness. Social Problems, 36(2), 135-148.

The authors discuss how nondisabled people define their caring and accepting relationships with people with severe disabilities. The authors frame their discussion around a sociology of acceptance and identify four dimensions which maintain humanness of the people with severe disabilities: attributing thinking to the other, seeing individuality in the other, viewing the other as reciprocating, and defining social place for the other.

Bogdan, R., & Taylor, S. J. (1994). The social meaning of mental retardation: Two life stories. New York: Teachers College Press.

The concept of mental retardation is challenged through life histories based on in-depth interviews with former inmates of institutions for people labelled retarded. The authors argue that mental retardation is not real entity, but rather a social construction.

Edgerton, R. B. (1993). The cloak of competence: Revised and updated. Berkeley: University of California Press.

This updated edition focuses on former inmates of institutions for people with mental retardation. The author addresses stigma, passing, and the role for normal benefactors.

Edgerton, R., & Gaston, M. A. (Eds.). (1991). “I’ve seen it all!”: Lives of older persons with mental retardation in the community. Baltimore: Paul H. Brookes Publishing Co.

The authors offer life histories of nine elderly people who have lived independently in the community for at least thirty years. These qualitative studies are based on participant observation and highlight each person’s background, family history, institutional experience, and community life.

Ferguson, P. M., Ferguson, D. L., & Taylor, S. J. (Eds.). (1992). Interpreting disability: A qualitative reader. New York: Teachers College Press.

Compilation of qualitative and interpretive studies of people with disabilities or their families. The chapters are divided into four parts: disability at the edges of life, disability and the schools, disability and the community, and disability and culture.

Goode, D. (1994). A world without words: The social construction of children born deaf and blind. Philadelphia: Temple University Press.

Based on his study of two girls who were born with rubella and are deaf-blind and mentally retarded, Goode argues that despite a use of formal language, human beings can communicate and be understood through other means. He shows how the children created their own set of symbols to construct their reality using senses other than sight and sound.

Goode, D. A. (1992). Who is Bobby? Ideology and method in the discovery of a Down Syndrome person’s competence. In P. M. Ferguson, D. L. Ferguson, & S. J. Taylor (Eds.), Interpreting disability: A qualitative reader (pp. 197-212). New York: Teachers College Press.

Goode discusses using an “emic” approach to the study of people with developmental disabilities. This approach is contrasted with the typical “etic” or medical/objective approach. An emic approach is a subjective or insider point of view that may offer a better understanding of the competency of a person with a developmental disability.

Groce, N. (1992). “The town fool”: An oral history of a mentally retarded individual in small town society. In P. M. Ferguson, D. L. Ferguson, & S. J. Taylor (Eds.), Interpreting disability: A qualitative reader (pp. 175-196). New York: Teachers College Press.

Groce explores the life of Millard Fillmore Hathaway, an individual labeled mentally retarded who lived in a small northeastern town in the late 19th and early 20th centuries. Groce reports that villagers categorized Millard as the town fool, although he was an accepted part of the community.

Langness, L. L., & Levine, H. G. (Eds.) (1986). Culture and retardation. Dordrecht, Reidel.

This compilation of ethnographic articles focus on the life experiences of people labeled mildly mentally retarded. They stress that mental retardation is more of a socio-cultural phenomenon than a medical/psychological one. The articles cover the subjects’ lives in terms of their childhood, patterns of adapting to everyday life, and their response to the label of retardation. In addition, the editors offer a discussion about life history research of people labeled mentally retarded, as well as a discussion about anthropological contributions this type of study.

MacEachen, E., & Munby, H. (1996). Developmentally disabled adults in community living: The significance of personal control. Qualitative Health Research, 6(1), 71- 89.

The authors explore issues in community living from the perspective of people with mild developmental disabilities. Participants report imposed control by service providers and isolation from the community. Most important, they wanted to be independent and in control of their own lives.

Mercer, J. (1973). Labeling the mentally retarded. Berkeley: University of California Press.

Based on an eight year study that used IQ tests to screen 7,000 people for mental retardation, Mercer discovers that schools label people mentally retarded more than any other institution, that minorities are over-represented in the category of mental retardation, and that after leaving school most people are no longer included in this category. Mercer examines the social and cultural aspects of being labelled mentally retarded, but does not question the construct itself.

Taylor, S. J., & Bogdan, R. (1989). On accepting relationships between people with mental retardation and nondisabled people: Towards an understanding of acceptance. Disability, Handicap & Society, 4(1), 21-36.

The authors discuss a “sociology of acceptance” as a theoretical model for understanding relationships between people without disabilities and people with mental retardation. They state that family, religious commitment, humanitarian sentiments, and feelings of friendship are all sentiments expressed by nondisabled people who have relationships with people with mental retardation.

Taylor, S. J., Bogdan, R., & Lutfiyya, Z. M. (Eds.). (1995). The variety of community experience: Qualitative studies of family and community life. Baltimore: Paul H. Brookes Publishing Co.

The editors present qualitative case studies that focus on people with disabilities living in communities and assuming roles as full members of society. The studies present the perspectives of the people with disabilities or their families, rather than service providers. This provides the opportunity to understand how people with disabilities make choices, earn a living, form friendships, and maintain family relationships.

Law and Policy

Braddock, D., Hemp, R., Bachelder, L., & Fujiura, G. (1995). The state of the states in developmental disabilities (4th ed.). Washington, DC: AAMR.

Published by the American Association on Mental Retardation (AAMR), this book provides a financial analysis of mental retardation and developmental disabilities services on a state by state basis. The information is statistical and is presented in the forms of graphs, charts, and tables. Information covers the last 16 years, and includes an analysis of trends in developmental disability services, profiles of resource allocations and service delivery, and technical information. Topics covered include institutional services, closure of institutions, trends in community services, and costs of care.

Lakin, K. C., Braddock, D., & Smith, G. (Eds.) (1994-2000). Trends and milestones. Mental Retardation.

This is a regular one-page feature of the journal, Mental Retardation. “Trends and milestones” summarizes current national data on issues such as institutional closures, state and national deinstitutionalization trends, and federal and state expenditures for developmental disability services.

Rothman, D. J., & Rothman, S. M. (1984). The Willowbrook wars. New York: Harper & Row.

Documents events that occurred after court ordered reforms of Willowbrook, an institution for people labeled mentally retarded. Rothman and Rothman followed events at Willowbrook from 1975 to 1982 in an attempt to understand social reform and its implications for people being deinstitutionalized.

Taylor, S. J. (1988). Caught in the continuum: A critical analysis of the principle of the least restrictive environment. Journal of The Association for Persons with Severe Handicaps, 13(1), 41-53.

This article examines the principle “least restrictive environment” and the associated “continuum” concept, which have served as frameworks for the design of residential, vocational, and special education services for people with developmental disabilities. The author identifies the conceptual and philosophical flaws underlying these notions and argues for the need to develop new concepts and principles to guide the development of services.

Wehman, P. (Ed.). (1993). The ADA mandate for social change. Baltimore: Paul H. Brookes Publishing Co.

Contains articles that explore the importance of the ADA and its impact for people with disabilities and specifically people labelled mentally retarded. The articles explore such issues as educational reform, family empowerment, employment opportunities, reasonable accommodations, and attitudinal changes.

Parent and Family Issues

Ferguson, P. M., Ferguson, D. L., & Jones, D. (1988). Generations of hope: Parental perspectives on the transitions of their children with severe retardation from school to adult life. Journal of The Association for Persons with Severe Handicaps, 13(3), 177-187.

This study explores how parents interpret the events and relationships surrounding the transition of their children with severe disabilities from school to adult life. The authors show how transitions are complex socially constructed processes that need to be understood in both their historical and their cultural context.

Foster, S. B. (1987). The politics of caring. Philadelphia: The Falmer Press.

Foster studied 13 admissions to the Weston Center, an institution for people labeled developmentally disabled. She also studied four people whose applications for admission were denied. She offers discussions on institutionalization and deinstitutionalization, the limits and powers of professionals, and private troubles such as family involvement or lack of involvement.

Turnbull, H. R., & Turnbull, A. P. (1985). Parents speak out: Then and now. Columbus: Charles E. Merrill Publishing Co.

The editors offer a compilation of essays that present the perspectives of parents or relatives of people with disabilities. The essays illustrate that having a child with a disability is not invariably a burden to the family. This second edition offers updates from families profiled in the first book as well as three new essays.

Contemporary Issues

Dybwad, G., & Bersani, H. Jr. (Eds). (1996). New voices: Self-advocacy by people with disabilities. Cambridge: Brookline Books.

Documents the self-advocacy movement through a collection of papers by both advocates and self-advocates. It examines the status of self-advocates with developmental disabilities and projects the future of the movement as it expands worldwide. Topics include the historical setting, the self-advocate experience, worldwide views, critical views, and future work in the movement.

Exchange of opinion on the risks and benefits of facilitated communication. (1994). Mental Retardation, 32(4), 299-318.

A series of commentaries on the potential risks and benefits of facilitated communication (FC). The first commentary by Levine, Shane, and Wharton is a critical analysis of FC by leading opponents of FC. This is followed by reaction papers by Ferguson and Horner, Goode, Halle, and Hitzing, none of whom are identified with a pro or con position on this technique. Levine, Shane, and Wharton provide a response to the reaction papers at the end. An editorial introduction provides background on this mini-symposium.

Ferguson, D. L. (1994). Is communication really the point?: Some thoughts on communication and membership. Mental Retardation, 32(1), 7-18.

This article examines communication inventions as one example of professional efforts to ameliorate the effects of severe disability. The author argues that the real point of such efforts is not so much improved communication as membership in society and that attention should shift from changing behavior to insuring that membership is achieved.

Kennedy, M. J. (1994). The disability blanket. Mental Retardation, 32(1), 74-76.

Written from the perspective of a person with a disability, Kennedy discusses the problems of being an individual in a service system that invades privacy and takes away choices. He argues that the people with disabilities should be allowed to be in control of their own lives, to receive services when and where they want them, and have professionals consult with them rather than answering to professionals.

Mank, D. (1995). The underachievement of supported employment: A call for reinvestment. Journal of Disability Policy Studies, 5(2), 1-24.

Despite the thousands of individuals benefitting from supported employment, access to these programs is limited and investment in change is lessening. Mank provides recommendations for change such as new alliances with people with disabilities, investing in community and employers, putting greater control into the hands of people with disabilities, and rejecting the segregation of the current system.

Jacobson, J. W., Mulick, J. A., & Schwartz, A. A. (1995). A history of facilitated communication: Science, pseudoscience, and antiscience. American Psychologist, 50(9), 750-765.

This article is must reading for anyone interested in understanding the controversy surrounding facilitated communication. According to the authors, facilitated communication is an example of postmodernist trends that have challenged the supremacy of psychological and clinical decision-making. The article demonstrates why facilitated communication has aroused such passionate opposition among certain professionals.

Perske, R. (1995). Deadly innocence? Nashville, TN: Abingdon Press.

Perske documents the life of Joe Arridy, a man labeled “feebleminded” who was forced to confess to the rape and murder of a teenage girl. Despite little evidence, Arridy was convicted and executed in 1939. Perske examines the case against Arridy and the possible connections between being labeled “feebleminded” and confessing to crimes. His arguments offer implications for the present day criminal justice system.

Meyer, L. H., Peck, C. A., & Brown, L. H. (Eds.) (1991). Critical issues in the lives of people with severe disabilities. Baltimore: Paul H. Brookes Publishing Co.

This is an edited book sponsored by The Association for Persons with Severe Handicaps (TASH). The book includes TASH resolutions on major policy issues confronting people with severe cognitive disabilities as well as literature reviews and essays authored by major TASH leaders. The contributions to the book provide an excellent summary of recent trends and current thinking on community living, supported employment, social relationships, inclusive education, nonaversive behavioral interventions, and advocacy.

O’Brien, J. (1994). Down stairs that are never your own: Supporting people with developmental disabilities in their own homes. Mental Retardation, 32(1), 1-6.

O’Brien discusses the recent changes in living for people with disabilities from group home residences to homes of heir own. Meeting the challenges of supported living requires new relationships among people who provide and receive supports so that people with developmental disabilities can establish a sense and security of place and of personal control over their own homes and over the assistance they require.

Special topic on facilitated communication. (1994). Journal of The Association for Persons with Severe Handicaps, 19(3), 149-199.

This is an exchange of opinion between leading proponents, Biklen and Duchan, and opponents, Shane and Green, of facilitated communication. The exchange of opinion is followed by reaction papers commenting on the pro and con positions.

Taylor, S. J., Bogdan, R., & Racino, J. A. (Eds.). (1991). Life in the community: Case studies of organizations supporting people with disabilities. Baltimore, MD: Paul H. Brookes Publishing Co.

The editors provide qualitative case studies of organizations that support people with disabilities in community places. Topics covered include organizations supporting children with severe developmental disabilities, and organizations supporting adults with developmental disabilities in their own homes.

Steve Taylor is Professor and Coordinator of the Disability Studies Concentration in Cultural Foundations of Education and Director of the Center on Human Policy at Syracuse University. Perri Harris is a doctoral student in the Disability Studies Concentration. Preparation of this article and annotated bibliography was supported in part by the National Resource Center on Community Integration, which is funded by the National Institute on Disability and Rehabilitation Research. Of course, the authors’ opinions are their own.