DISABILITY STUDIES:
INFORMATION AND RESOURCES

Edited and Compiled by
Steven Taylor, Bonnie Shoultz, and Pamela Walker

With contributions by
Jagdish Chander, Beth Ferri, Perri Harris, Lori Lewin, 
Michael Schwartz, Zach Rosetti, Julia White, and Rachael Zubal-Ruggieri

November 2003

Listing of Academic Programs Updated August 2006

Preparation of this information package was supported in part by the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), under Contract No. No. H133A990001 awarded to the National Resource Center on Supported Living and Choice, Center on Human Policy, School of Education, Syracuse University. The opinions expressed within are those solely of the authors, and no official endorsement by the U.S. Department of Education is inferred. The Center on Human Policy would like to thank Ellen Blasiotti, Project Officer, NIDRR, for her support and assistance.

DISABILITY STUDIES: INFORMATION AND RESOURCES

Table of Contents

 

Introduction

Disability Studies refers generally to the examination of disability as a social, cultural, and political phenomenon. In contrast to clinical, medical, or therapeutic perspectives on disability, Disability Studies focuses on how disability is defined and represented in society. From this perspective, disability is not a characteristic that exists in the person so defined, but a construct that finds its meaning in social and cultural context.  

Disability Studies is a vibrant and diverse “field” or “area of inquiry.”  First of all, it is interdisciplinary and multi-disciplinary. No single academic discipline can place a claim on Disability Studies. Rather, the field is informed by scholarship from such different disciplines as history, sociology, literature, political science, law, policy studies, economics, cultural studies, anthropology, geography, philosophy, theology, gender studies, communications and media studies, and the arts.

Second, Disability Studies covers an incredibly diverse group of people. People who are blind, deaf, use wheelchairs, have chronic pain, learn at a slower pace than other people, and so on have vastly different experiences and perspectives. Does it make sense to lump such different human beings under a simple category such as disability? It does—not because they are the same in any biological or philosophical sense, but because society has placed them in this category, with consequences for how they are viewed and treated by the majority presumed to be nondisabled.

Finally, it is usually easier to define what Disability Studies is not (not medicine, rehabilitation, special education, physical or occupational therapy, and professions oriented toward the cure, prevention, or treatment of disabilities) than to specify what it is. Although Disability Studies scholars generally subscribe to the “minority group model” of disability—the view that the status of people as a minority shapes their experiences in society, they agree on little else. For example, some scholars view disability in terms of culture and identity, while others see disability as a label and a social construct.  

Scholars even use different language to refer to the people at the center of inquiry in Disability Studies. “Disabled person” is used to draw attention to the centrality of disability in individual identity; “person with a disability” or “people first language” conveys the idea that having a disability is secondary to the people’s identity as human beings; “person labeled disabled” (mentally retarded, mentally ill, and so on) focuses on how disability is a socially constructed definition imposed on people. Within sub-groups, minor variations in language and spelling can carry tremendous significance. Thus, “deaf person” and “Deaf person” mean very different things, with the latter emphasizing membership in a culture defined linguistically.

This information package reflects the diversity of the field of Disability Studies. We have included contributions representing different disability groups, perspectives, and disciplines.

The information package is divided into nine sections. The first contains annotations and listings of books, chapters, and articles. Practically every week a new writing related to Disability Studies is published. It is almost impossible to keep up with scholarship in this area. In preparing these annotations and listings, we have undoubtedly overlooked important work. An omission of a book, chapter, and article does not necessarily mean that we think it does not belong. It likely means we did not come across it or forgot about it. In addition, although we tried to annotate what we see as the most important contributions in Disability Studies, some readings on the non-annotated list warrant serious attention.  As with any writing project, at some point you need to “get it out the door.”

The next section includes annotations and a listing of films and documentaries. As in the case of the readings, these are not intended to be comprehensive.

The following section contains a list, with a general description and contact information, of academic programs in Disability Studies in North America. Of course, Disability Studies scholarship is not limited to North America. Academic programs can be found in the United Kingdom and other countries. Since we are located in North America, information on programs  in the United States and Canada is most readily accessible to us. In a future version of this package, we might attempt to identify programs on other continents.  Before reviewing this list of academic programs, readers should consult our criteria for inclusion.  The list is confined to colleges and universities that offer formal degrees, minors, majors, certificates, or concentrations in Disability Studies.  Many other universities and colleges offer courses on Disability Studies or host relevant research institutes and conferences.  We did not attempt to identify these in this listing.

The next five sections contain information on periodicals, special or feature issues of periodicals, organizations, special interest groups of professional or academic associations, and Internet resources.

In the final section of this information package, we make suggestions of books and readings on Disability Studies that can be used in courses in various academic disciplines.

If we have overlooked any writings, films, programs, organizations, or resources in preparing this information package, we would appreciate it if readers brought these to our attention. Although this package is dated November 2003 to reflect when formatting and editing were completed, most of the listings were finalized in summer 2003.

Steven J. Taylor, Ph.D.
Director, Center on Human Policy
Professor, Cultural Foundations of Education
Coordinator, Disability Studies
Syracuse University

 

  DISABILITY STUDIES BOOKS, CHAPTERS, AND ARTICLES

Annotated Books, Chapters, and Articles

The following section is comprised of selected Disability Studies books, chapters, and articles. They are across disciplines, and a large amount of them are edited books that cover a variety of topics, including disability rights, identity politics, cultural studies and disability, social perspectives on disability, and perspectives of people with disabilities. Also included are a number of fictional pieces and poetry. For other resources, following this listing is a separate section on autobiographies and personal narratives, a selection of classics from one Disability Studies scholar’s perspective, and a bibliography of titles that we were unable to include either due to time constraints or space limitations.


Albrecht, G. L., Seelman, K. D., & Bury, M. (Eds.). (2001). Handbook of Disability Studies. Thousand Oaks, CA: Sage Publications.

This volume includes contributions from an international, multidisciplinary set of Disability Studies scholars. It is divided into three sections: the shaping of Disability Studies as a field; experiencing disability; and disability in context. Each section contains chapters addressing conceptual, theoretical, methodological, practice, and policy issues. Overall, the intent of the book is to organize existing knowledge within Disability Studies, highlight tensions and debates within the field, and point to future research and practice needs. It is a comprehensive resource, which will be of use to disability activists, scholars, and policy makers.


Barnartt, S., & Scotch, R. (2001). Disability protests: Contentious politics, 1970-1999. Washington, DC: Gallaudet University Press.

This book presents an analysis of contentious political action within the deaf and disability communities. The authors note that within scholarly examinations of social movements, there is almost no literature addressing the deaf or disability movements. This book is intended to fill that gap, through analysis of actual protest events. In examination of protests, the authors discuss the history of collection action, various aspects of protests (e.g., cross disability and impairment-specific), the effects of protests, and the future of such political action.


Barnes, C., & Mercer, G. (2003). Disability [Key Concepts]. Cambridge, UK: Polity Press.

Drawing from international literature and a range of disciplinary perspectives, Barnes and Mercer explore the evolution of the concept of disability. The book highlights the exclusion and marginalization of disabled people across different historical and cultural contexts, such as family life and reproduction, education, employment, leisure, cultural imagery, and politics. Disability is discussed in relation to social oppression, similar to that experienced by women, minority ethnic and racial groups, and lesbians and gay men. Key issues addressed include: theorizing disability; historical and comparative perspectives; experiencing impairment and disability; professional and policy intervention in the lives of disabled people; disability politics, social policy, and citizenship; and disability culture.

 
Barnes, C., Mercer, G., & Shakespeare, T.  (1999). Exploring disability: A sociological introduction. Cambridge, UK: Polity Press.

This book provides an introduction to the Sociology of Disability. The authors trace the history of sociological theorizing on disability and chronic illness and pay special attention to the British “social model of disability” that emerged in the late 1980s and 1990s. As noted by the authors, the social model of disability is a political account of disability grounded in the experiences of disabled people and activists, rather than a sociological framework. The authors review literature and policies on disability in both the United Kingdom and North America. The book would be a useful introductory text in Sociology of Disability, Disability Studies, and Disability Policy courses.    


Barnes, C., Oliver, M., & Barton, L. (Eds.). (2002). Disability studies today. Cambridge, UK: Polity Press.

The book compiles the works of some of the leading scholars of Disability Studies from the UK, USA and Canada. The contributors include Paul Abberley, Gary L. Albrecht, Colin Barnes, Len Barton, Peter Beresford, Anne Borsay, Harlan Hahn, Chris Holden, Bill Hughes, Phil Lee, Geof Mercer, Mike Oliver, Marcia H. Rioux, John Swain, Carol Thomas and Ayesha Vernon.

This textbook presents an analysis of the issues in Disability Studies primarily in the context of Britain and the United States, while contributors like Chris Holden and Peter Beresford (Chapter 10) and Marcia H. Rioux (Chapter 11) present issues in the context of globalization. Other main topics covered in the book include: the history of the development of Disability Studies in Britain and America; key ideas, issues and thinkers; the role of the body; divisions and hierarchies; history, power and identity; work, politics and the disabled peoples' movement; human rights, research and the role of the academy.

 
Baynton, D. C. (1996). Forbidden signs: American culture and the campaign against sign language. Chicago: University Of Chicago Press.

Douglas C. Baynton, an assistant professor of history and American Sign Language at the University of Iowa, has produced a rich history of the varied and sundry attempts that have been made to oppress the use of sign language. The book touches upon the cultural aspects of deafness and presents an interesting study of American cultural history with reference to the difference in perception of hearing people like Alexander Graham Bell and deaf people who asserted for their right to use sign language. Through a very powerful narrative, “Baynton places this struggle between the 'manualists' and the 'oralists' into its very broadest cultural context, seeking to offer fresh perspectives on the shifting ways in which Americans have conceptualized human history and American identity, nature and human nature…” (Journal of American History , September 1997).


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.


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 exposé 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.


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 labeled retarded. The authors argue that mental retardation is not a real entity, but rather a social construction.


Braddock, D. (Ed.). (2002). Disability at the dawn of the 21st Century and the state of the states. Washington, DC:  American Association on Mental Retardation.

This fifth edition is the most extensive edition of The State of the States volumes. It is divided into three parts. Part I explores the historical basis of disability services, based on a cross-disability perspective. Part I also includes a cross-disability empirical study of public financial support for disability in the United States, across federal, state, and local levels, and across mental and physical disability categories. Part II presents updated state-by-state profiles, which examine programmatic structure and financing of mental retardation/developmental disabilities services. Emerging trends and issues are identified, including aging family caregivers, class action litigation with regard to waiting lists for residential services, and the growth of the Medicaid Home and Community Based Services Waiver. Part III is an in-depth comparative study of the development of institutional and community services in two states: Michigan and Illinois.  


Bragg, L. (2001). Deaf world: A historical reader and primary sourcebook. New York: New York University Press.

This is a comprehensive anthology of Deaf history and culture.  It includes several chapters on race and gender.


Brueggemann, B. J. (1999). Lend me your ear: Rhetorical constructions of deafness.  Washington, DC: Gallaudet University Press.

Weaving personal narrative with critical analysis, Brueggemann explores the social construction of deafness through a variety of discursive practices. The book explores issues of passing as well as Deaf identity, culture, and the rhetorics of silence.


Burch, S.  (2002). Signs of resistance: American Deaf cultural history, 1900 to 1942.  New York: New York University Press.

Historians have assumed that the triumph of oralism was total, but Susan Burch aims in her book to debunk that assumption by showing that deaf students, teachers, and staff in the schools for the deaf consistently and creatively subverted oralist policies and goals within the schools.  Burch’s main argument is that the strenuous efforts of oralists to assimilate deaf children resulted in strengthening the children’s ties to a separate Deaf cultural community. In her book, Burch, a professor of history at Gallaudet University, reinterprets early 20th-century history of the deaf community.  Using community sources such as deaf newspapers, memoirs, films, and interviews with deaf people, Burch demonstrates how the deaf community mobilized against the oralist onslaught, defended its language, became more and more politically conscious, and clarified its cultural values. In this struggle, a collective deaf consciousness, identity, and political organization arose.

 
Campbell, J., & Oliver, M. (1996). Disability politics: Understanding our past, changing our future. London and New York: Routledge.

This book uses the voices of disabled people to describe the changes in the disability sector in Britain as a result of the social movement of disabled people, particularly in the 1970s to mid 1990s. According to the authors, “the book is based upon the ethnographic and action research traditions” (p. 25) and “is a mixture of social theory, political history, action research, individual biography and personal experience” (p. 1). This work is regarded to be a significant contribution to history, social theory and policy, and political studies. The book clearly traces the emergence and survival of the disability movement and provides an honest evaluation of its successes and failures. It then goes on to consider possible future directions for disabled people in 21st century Britain. It is great contribution to the promotion of the understanding of the disability movement in Britain.
 

Charlton, J. I. (1998). Nothing about us without us: Disability oppression and empowerment. Berkeley: University of California Press.

The author uses a disability rights standpoint to discuss the international oppression of people with disabilities. He provides a theoretical framework for understanding disability oppression not as something that has come from the attitudes of people without disabilities, but because of systems and structures of oppression from which these attitudes stem. He uses interviews with disability rights activists from around the world to back his argument.

 
Clare, E. (1999). Exile & pride: Disability, queerness, and liberation. Cambridge, MA: South End Press.

“Gender reaches into disability; disability wraps around class; class strains against abuse; abuse snarls into sexuality; sexuality folds on top of race…everything finally piling into a single human body. To write about any aspect of identity, any aspect of the body, means writing about this entire maze. This I know, and yet the question remains: where to start?” (p. 123)

Eli Clare investigates disability, class, queerness, child sexual abuse, and conflicting political and environmental awarenesses, using the metaphors of landscape and her own experience. She recalls and brings to life images of the mountains and forests, rivers and oceans of her childhood in rural Oregon, her body, and her many homes, in these musings on home, exile, politics and experience.   

 
Corker, M. (1998).  Disability discourse in a postmodern world. In T. Shakespeare (Ed.), Disability Studies reader: Social science perspectives (pp. 221-233).  London & New York, NY: Cassell.

Argues for a discursive approach for understanding deafness and disability.


Corker, M., & Shakespeare, T. (Eds.). (2002). Disability/postmodernity: Embodying disability theory. New York: Continuum.

This collection of 17 essays from leading scholars around the world applies the analysis of postmodernity to Disability Studies in hopes of bridging social science perspectives and humanities perspectives on disability. Recognizing that the global experience of disability is far too complex to be limited by one set of ideas, the editors attempt to build on the social model of disability, in essence “thinking globally and acting locally at the same time.” While the theory advances to the next level, the goal remains the same: to achieve inclusive communities and “to contribute to the emancipation of disabled people, whoever they are, and whatever they decide that emancipation means.” Loosely organized into three sections, the volume begins with an exploration of theoretical perspectives, including concepts of difference, identity, and the body. It follows with a focus on culture and disability and ends by delving into social practice, inspiring us all to ponder what it will take to realize inclusive societies.


Couser, G. T. (1997).  Recovering bodies: Illness, disability, and life writing.  Madison, WI: University of Wisconsin Press.

Literary analysis of the ever-growing genre and subgenre of personal narratives of disability and illness.
 

Crutchfield, S., & Epstein, M. (Eds.). (2003). Points of contact: Disability, art and culture [Corporealities: Discourses of Disability]. Ann Arbor: University of Michigan Press.

Overview of the role of art in the social construction of disability. Also explores counter images of disability in art that resist or talk back to conventional portrayals.
 

Davis, L. J. (1995).  Enforcing normalcy: Disability, deafness, and the body.  London & New York: Verso.

A critical and historical analysis of the construction of normalcy. Includes a chapter interrogating disability and the female nude and concludes with a cogent argument for why disability must be included in the usual triad of gender, race and class.


Davis, L. J. (Ed.). (1997). The Disability Studies reader. New York: Routledge.

This edited reader is a collection of classic and new essays, as well as fiction and poetry, in the field of Disability Studies. This perspective places disability in a political, social, and cultural context that theorizes the construction of disability in this society. The authors address such areas as feminist theories of disability, the construction of deafness, and disability as metaphor. The book is divided into seven sections, including historical perspectives, politics of disability, stigma and illness, gender and disability, disability and education, disability and culture, and fiction and poetry. This is progressive reading, but it should be of note that it is traditional in the sense that Disability Studies translates to “physical Disability Studies” and there is little mention of developmental disability.


Davis, L. J. (2002). Bending over backwards: Disability, dismodernism & other difficult positions [Cultural Front]. New York: New York University Press.

This is a book of essays focusing on themes related to disability identity and Disability Studies. He notes the silence regarding disability identity versus other identities such as race, gender, or sexual orientation.  He argues that instability of the disability category can be the beginning of a new way of thinking about all identity categories. As he states, “The dismodern era ushers in the concept that difference is what all of us have in common. That identity is not fixed but malleable.” Essays in the book illustrate the key role that Disability Studies can play in terms of cultural criticism and theory.

 
Deutsch, H., & Nussbaum, F. (Eds.). (2000). “Defects”: Engendering the modern body [Corporealities: Discourses of Disability]. Ann Arbor: University of Michigan Press.

Organized around three broad topics: disability, monstrosity, and imperfections, the collection examines the cultural construction of dis/ability during the early modern and Enlightenment periods. The final chapter by Kaplan troubles feminism’s historical grounding in the rhetoric of liberal individualism and autonomy.


Eiesland, N. (1997). The disabled God: Toward a liberation theology of disability. Nashville, TN: Abingdon Press.

Through this book, Eiesland, who became disabled as a child when she had polio, helps the reader to see how the “hidden history” of conventional bodies living ordinary lives with grace and dignity, disgust and illusion, can make for both a theological and pastoral contribution. Arguing for a liberation theology, she calls on us to move away from our defining of people with disabilities as people who need to adjust to a minority group that is subject to social stigmatization. While her examples tend to be based on the experiences of people with physical disabilities, what she has to say also is insightful for those working to include people with developmental disabilities in faith communities.


Fawcett, B. (2000). Feminist perspectives on disability. London: Pearson Education.

Illustrates the parallels between Disability Studies and feminist theory, as well as possibilities of a feminist poststructuralist approach to the study of impairment and disability.


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

A historical study of social policy and practice toward people labeled "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.

 
Ferguson, R. J. (2001, July). We know who we are: A history of the blind in challenging educational and socially constructed policies--A study in policy archeology [Critical Concerns in Blindness Series, No. 1].  San Francisco: Caddo Gap Press.

Most of the academic works dealing with the history of education of blind people and the social policies related to the field of blindness in the last century were written by the people who worked within the “blindness system” and/or were sympathetic to its interests. This book is a rare academic work of its kind that provides a different perspective in order to show the conflicts that the organized blind encountered with the professional culture of the blindness system and their efforts to create educational policies for the blind instead of in conjunction with the blind. By using “policy archaeology” as a framework, the author has made a good attempt to write a history, from the perspective of the organized blind, of their struggle against discrimination as the result of educational and social policies created by professionals in the area of blindness.

The author describes the nature of the conflicts and issues raised by the organized blind in their pursuit of having their voice heard in educational policy decisions related to themselves.


Fine, M., & Asch, A. (Eds.). (1988). Women with disabilities: Essays in psychology, culture, and politics [Health, Society, and Policy Series]. Philadelphia: Temple University Press.

Fine and Asch, the editors of this volume, have for a number of years been involved in examining what it means to be a woman with a disability in today’s society. Their early conceptualization of the problems facing women with disabilities has been very influential in the field. This comprehensive, edited collection addresses a wide range of issues that are critical in the lives of women with disabilities. The chapters are organized in three categories: “Bodies and Images,” “Disabled Women in Relationships,” and “Policy and Politics.” In a lengthy introduction, Asch and Fine review past work on the subject and point toward future exploration. The editors also close the book with an epilogue entitled, “Research and Politics to Come.” Like all collections of essays, the quality is uneven. Taken together, however, this is an important collection, covering a broad range of critical issues. For example, the volume addresses issues relating to women with developmental disabilities, a group that has traditionally been neglected in volumes on women with disabilities. Other critical issues dealt with include:  disability and ethnicity, the moral dilemma between reproductive rights and disability rights, a discussion about girls with disabilities, and an analysis of the exclusion of women with disabilities from the women’s movement. This is a book that everyone interested in the lives and experiences of women with disabilities should read.

 
Fries, K. (1995, September/October). Cross-cultured. Disability Rag & Resource, 47-48.

Fries explores what it is like to be both disabled and gay, to be in the minority in each of his communities and the interesting intersections in how a disabled gay man is viewed. He gives the example of how gay men are viewed by non-gay people as sex-obsessed, while disabled men are stereotyped as asexual. On the other hand, one of the major problems he and others face is lack of presence if not invisibility. He asks editors and producers, in particular, to recognize the gay disabled man as a character and a reader/viewer.


Fries, K. (Ed.). (1997). Staring back: The disability experience from the inside out. New York: Plume.

This book, edited by Kenny Fries, explores the experience of disability through writings by contributors who have disabilities. The collection includes nonfiction, poetry, fiction, and drama by such authors as Nancy Mairs, John Hockenberry, Anne Finger, Adrienne Rich, Mark O’Brien, and Marilyn Hacker. Each chapter explores disability not as something that limits one’s life, but as an experience all its own. Fries considers the theme of this edited book as one of human connection, “connection with the past, connection with one another, connection with our bodies, connection with ourselves.”


Garland-Thomson, R. (1994). Redrawing the boundaries of feminist Disability Studies. Feminist Disability Studies, 20(3), 583-597.

In this review essay, Rosemarie Garland-Thomson argues for the recognition of feminist Disability Studies within feminism. She states that feminist critical analysis does not usually recognize disability as a category of otherness (as it does with race, class, and gender) unless the study specifically states this focus. Although helpful, she would like to see a shift away from women’s autobiographical accounts of their own experiences with disability, which often promote the “disaster/terror/pity scenario of disability,” to an articulation of feminist Disability Studies as a “major critical subgenre within feminism.” She asserts that feminist Disability Studies can be located in the broader area of identity politics if discourses of the body marked as deviant are included.
  
To illustrate her argument, Thomson draws on four feminist works.  The first three, Invalid Women: Figuring Feminine Illness in American Fiction and Culture, 1840-1940 by Diane Price Herndl, Monstrous Imagination by Marie-Helene Huet, and Tattoo, Torture, Mutilation, and Adornment: The Denaturalization of the Body in Cultural Text edited by Frances E. Mascia-Lees and Patricia Sharpe, do not deal with “disability” specifically; instead, Thomson interprets these works in a feminist Disability Studies perspective. She uses the fourth book, Barbara Hillyer’s Feminism and Disability , because it specifically addresses the issue of disability and feminism, and because it embodies the feminist principle that the personal is political. Thomson hopes that these four books introduce perspective into the emerging field of feminist Disability Studies.


Gleeson, B. (1999). Geographies of disability. New York: Routledge.

Space, mobility, and accessibility are critically important issues for people with disabilities, but this is given very little attention by social policy makers, urban planners, architects, and social science researchers. Brendan Gleeson steps into the breach with this book, which looks at how geography shapes disabled people’s experiences and explores the relationship between space and disability. Gleeson explicates how space, place, and mobility are central to the lives of people with disabilities.  

Drawing on a wide range of case studies and historical and contemporary data sources, including maps and photographs, Gleeson, an Australian scholar, presents the key theories and issues of the geography of disability. The book is organized into three parts. The first part presents a critical appraisal of theories of disability and space and develops a disability model based on geography. The second part is a historical perspective and relies on case studies to show the impact of the emergence of capitalism on the lives of disabled people. The third part explores contemporary disability issues: the Western city and the important policies of community care and accessibility planning.

 
Goode, D. (1994). A world without words: The social construction of children born deaf and blind [Health, Society, and Policy Series]. 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.

 
Groce, N. (1985). Everyone here spoke sign language: Hereditary deafness on Martha's Vineyard. Cambridge, MA: Harvard University Press.

This ethno-historical study is an excellent portrayal of community life for deaf and hearing individuals of Martha's Vineyard. The reader is presented with the history of how the deafness was brought to the island. The book allows the reader to view the typicality of the lives of Islanders who were deaf, typicality due to the community's acceptance and ability to communicate with them. Groce takes us beyond the confines of medical or social definitions of deviancy and offers evidence that our pre-conceived stereotypes of what a disability may mean are really determined by the social construct we create as a society.
 
This well-researched book is a must, not only for people interested in the field of disabilities, but for anyone trying to struggle with inclusion into community life. The book is a simple thesis offering a profound message in a wide array of disciplines. It will add thought to issues that will remain unresolved and discussed for a long time to come.

 
Herndl, D. P. (1993). Invalid women: Figuring feminine illness in American fiction and culture, 1840-1940. Chapel Hill, NC: University of North Carolina Press.

Close textual readings of literary representations of disability and illness in literary texts by such authors as Harriet Beecher Stowe, Charlotte Perkins Gilman, Edith Wharton, Tillie Olsen, and others.

 
Hershey, L.  (various dates).  Poems and tapes: On the lawn , In the way, Dreams of a different woman (these are books of poetry); The prostitutes of Nairobi , You get proud by practicing (these are tapes of the author reading her poems). Denver, CO: Author.

Hershey’s very powerful poems are about disability rights and lesbian sexuality. Her work includes essays in a variety of periodicals as well as these books and tapes. Well worth sending for, at $5 per book and $7 per tape. Some of the poems can be read at http://www.cripcommentary.com/ .
 

Hillyer, B. (1993). Feminism and disability. Norman, OK: University of Oklahoma Press.

Written out of a need in the feminist movement to include women with disabilities and a need in the disability rights movement to address the unique experiences of women, Feminism and Disability combines the personal, political, and intellectual aspects of feminist theory and disability theory. Hillyer discusses such issues as body awareness, community, nature and technology, and the ways in which cultural standards of language, independence, and even mother-blaming are constructed. She also challenges political movements which stress productivity and normalization in order to include more types of people and more aspects of the human condition.


Hubbard, R. (1997). Abortion and disability: Who should and should not inhabit the world. In L. Davis (Ed.), The Disability Studies reader (pp. 187-202). New York: Routledge.

Links reproductive technologies and genetic testing with the history of eugenics.  

 
Imrie, R. (1996). Disability and the city: International perspectives.   London: Paul Chapman Publishing Ltd.

Rob Imrie takes exception in this book to the common perception of people with disabilities as helpless dependents who survive only on government benefits. Imrie challenges the stereotypes of disability as “pitiful,” and as “less than human,” and does so by exploring a critical context within which disabled people experience marginalization and ostracism: the built environment and physical access. In eight chapters dealing with the city, the physical environment, state policy, design, planning, and access, Imrie considers the role of design professionals--architects, planners, and building control officers–-in the construction of specific spaces which bar people with disabilities and keep them out. From broken streets and sidewalks to the absence of FM loop systems in buildings, disabled people constantly and repeatedly negotiate hostile environments.  Drawing on a range of data and material from the United Kingdom and the United States, Imrie shows how the environmental planning system in Britain attempts to address the inaccessibility of the built environment, and how people with disabilities contest the restrictions placed on their mobility.  Rob Imrie derives his insights from a wide range of social science disciplines–-geography, sociology, and environmental planning–-to craft a full picture of inaccessibility and struggle.

 
Ingstad, B., & Whyte, S. R. (Eds.). (1995). Disability and culture. Berkeley: University of California Press.

This edited book takes a global look at disability. Each chapter reflects understandings of disability from different cultures. Its anthropological focus examines the relationship between disability and culture, explaining disability in terms of social processes from a multicultural perspective. Contributing authors, who have done research in places such as Borneo, Kenya, Uganda, Nicaragua, as well as Europe and North America, explore the meanings of different types of disabilities to different cultures, and seek to understand the assumptions about humanity and personhood derived from their understandings of disability.

 
Jahoda, S. (1995). Theatres of madness. In J. Terry & J. Urla (Eds.), Deviant bodies: Critical perspectives on difference in science and popular culture (pp. 251-276). Bloomington, IN: Indiana University Press.

Photo-essay of 19th and 20th century representations of insanity and “female disorders” juxtaposed with advertising images, letters, diaries, case histories, and fictional texts.

 
Johnson, M. (2003). Make them go away: Clint Eastwood, Christopher Reeve & the case against disability rights. Louisville, KY: The Advocado Press.

This must-read book analyzes individual, state, and federal reactions to the Americans with Disabilities Act of 1990 (ADA). Kicking it off with the media examples of Clint Eastwood and Christopher Reeve, Mary Johnson, founder and editor of The Disability Rag and Ragged Edge magazines, ties together individual experiences, watershed cases, popular culture, and media coverage to offer a cultural and historical analysis of disability rights before and after the ADA. With an honest tone she confronts an overwhelming prejudice against people with disabilities manifest by an inexcusable inaccessibility to the world in which we all live. She describes the current state of the ADA and challenges a society that welcomes people with disabilities in theory but prevents them from living full lives in practice. “A law cannot guarantee what a culture will not give.”
 

Keith, L. (Ed.). (1994). Mustn't grumble: Writings by disabled women. London: The Women's Press.

This edited book, compiled by a woman with a disability, presents writings by other women who have a range of physical disabilities. The short stories and poems included in this book range in topic from issues of accessibility to abuse to equality. Disability is framed by these narratives as a social, cultural, and political issue, not only as a personal one. This is an excellent account of disability issues from a woman's perspective. It is powerful, moving, and educating for all readers.

 
Keith, L. (Ed.). (1996). What happened to you? Writings by disabled women. New York: The New Press.

Lois Keith compiled collections of fiction, essays, and poetry by disabled women in her new book, What Happened to You?   Her goal is to give women with disabilities a space to express their views on such topics as abuse, equality, sexuality, prejudice, and legislation dealing with disability issues. These narratives construct disability as a cultural and political issue, not only as a personal one.


Keith, L. (2001). Take up thy bed and walk: Death, disability and cure in classic fiction for girls. New York: Routledge.

Literary analysis and critique of disability and gender in 19th- and early 20th-century children’s literature.


Kleege, G. (1999). Sight unseen. New Haven, CT: Yale University Press.

Critical and cultural analysis of both vision and blindness.  Incorporates a critical reading of stereotypical tropes of blindness in literature, film, and everyday discourse.

 

Krieger, L. H. (Ed.). (2003). Backlash against the ADA: Reinterpreting disability rights [Corporealities: Discourses of Disability]. Ann Arbor: University of Michigan Press.

This edited book examines the backlash or resistance to the Americans with Disabilities Act (ADA) and disability rights generally by federal courts, the media, and businesses. The 12 chapters of the book describe how courts have ignored the spirit and watered down the provisions of disability rights laws and how the media have misconstrued and ridiculed the ADA. The authors argue that judges, media representatives, and others do not understand or openly reject the minority group or civil rights model underlying disability rights. Although some of the chapters analyze the legal reasoning and interpretations of court cases in depth, the book is generally accessible to non-legal readers. In addition to Linda Krieger, contributors include Ruth Colker, Lennard Davis, Matthew Diller, Harlan Hahn, Vicki Laden, Wendy Parmet, Stephen Percy, Marta Russell, Kay Schriner, Gregory Schwartz, Richard Scotch, Anita Silvers, and Michael Stein.

 
Lane, H. (1992). The mask of benevolence: Disabling the Deaf community. New York: Vintage Books.

The reviewer wonders if Lane would be put off that this book is annotated in an information packet on Disability Studies. Throughout the book, Lane asserts that deafness is not a disability, rather it is a linguistic minority, and that the hearing (audist) establishment has a long history of oppressing members of this linguistic minority through enforced school mainstreaming, which Lane terms the “most restrictive environment.” While Lane does not dispute that other students (he discusses students with cognitive impairments and behavioral issues) might require special education services, he refutes the idea that deaf students require oral special education.

Much of what Lane presents can be generalized to many other minority groups, including people who are labeled with disabilities (e.g., obstacles that the deaf community faces are enforced by the hearing community, his discussion of colonialism and paternalism, and the role of the oppressed). Much of Lane’s focus is the hegemony of audist institutions that oppress the Deaf cultural minority. Lane attempts to unmask, critique, and fight the institutions that serve to oppress and disable deaf people.  

While Lane does not critique the ADA itself, he comments upon the necessity of deaf people to participate in lobbying for its passing, but he reminds the reader that those energies instead might have been spent in lobbying for the application of the Bilingual Education Act to teaching students in American Sign Language (ASL). In particular, Lane critiques two main institutions—the education and medical establishments. The education establishment teaches deaf students from a hearing perspective, and Lane emphasizes the need for reform in the education of deaf students, for a return to how deaf education operated in the 19th century—residential schools, deaf teachers, teaching from a Deaf cultural perspective, ASL as the mode of instruction. Lane offers the Gallaudet Revolution of 1988 (Deaf President Now) as a philosophical model for deaf people taking back deaf education. Lane acknowledges the controversy surrounding residential schools, so he offers a detailed plan to reform the education of deaf students in the mainstream, comparing it to bilingual education. Lane also discusses the medical establishment’s attempt to eliminate Deaf culture by enforcing oralism onto deaf children through cochlear implants.

He discusses in depth the history, the process, and the outcomes of implanting cochlear devices. In providing the history of the FDA approval of cochlear implants, he discusses the failure of the FDA to consult deaf leaders and scholars, thus reinforcing his argument that the Deaf cultural minority is devalued and oppressed in the majority audist society.   
 

Linneman, D. R. (2001). Idiots: Stories about mindedness and mental retardation. New York: Peter Lang.

Personal and powerful, this collection of field notes, letters, interviews, and insight challenges us all to rethink prevailing notions of intelligence. At the forefront of this book is the concept of mental retardation. Sharing his experiences and stories with four children, Linneman confronts this socially constructed concept, pointing out the limitations it imposes on children’s lives and on adults’ perception of children’s potential. While the feel of this book is anecdotal, it deals well with the questionable perpetuation of oppressive assumptions of incompetence and ideas of normalcy. Linneman deconstructs the concept of mental retardation and suggests focusing on the concept of mindedness rather than embracing unhelpful labels.

 
Linton, S. (1998). Claiming disability: Knowledge and identity [Cultural Front]. New York: New York University Press.

In this book, Simi Linton studies disability in relation to identity. She argues that Disability Studies must understand the meanings people make of variations in human behavior, appearance, and functioning, not simply acknowledge that these variations “exist.” Linton explores the divisions society constructs between those labeled disabled and those who are not. She avoids a medicalized discussion of disability and promotes the notion that people with disabilities need to claim their identities as disabled and as contributing members to the understanding of disability as a socio-political experience.
 

Linton, S. (1998). Disability Studies/Not Disability Studies. Disability & Society, 13(4), 525-540.

In this article, Simi Linton seeks to define the boundaries between what should be considered Disability Studies and what should not. For reasons that she outlines, she proposes that curriculum and research that emphasize intervention should be viewed as separate from Disability Studies, which is a socio-political-cultural examination of disability. Linton advocates a liberal arts-based model similar to that which frames women's studies and African-American studies.

 
Lloyd, M. (1992). Does she boil eggs?  Towards a feminist model of disability. Disability, Handicap & Society, 7 (3), 207-221.

The author examines disability from the perspective of women with disabilities. She focuses on the social model of disability rather than a medical model and asserts that disability is another form of oppression experienced by women. She argues that disabled women have been excluded from both the women's movement, which is oriented toward non-disabled women, and from the disability rights movement, which is oriented toward disabled men. Using the history of black feminism, the author argues for a reframing of the analysis in which to explore the simultaneous experiences of gender and disability.  
 

Longmore, P. K. (2003). Why I burned my book and other essays on disability [American Subjects]. Philadelphia: Temple University Press.

This book is composed of a series of essays on disability scholarship and advocacy by historian Paul Longmore. The book contains an introduction and four parts. Part One, Analyses and Reconstructions, includes essays on disability history, including the League of the Physically Handicapped and the Great Depression and Activism in the 1970s and Beyond. Part Two addresses portrayals of disability in television and films. Part Three focuses on ethics and advocacy, and specifically medical decision making and physician assisted suicide. Part Four, Protests and Forecasts , includes essays on disability culture and bioethicist Peter Singer as well as an autobiographical account of experiences that lad to the title of the book.
 
Why I Burned My Book relates to the author’s public protest of discriminatory and unfair Social Security Administration policies that discourage disabled people from working. The book is extremely well-written and is must reading for anyone interested in Disability Studies.


Longmore, P. K., & Umansky, L. (Eds.). (2001). The new disability history: American perspectives [The History of Disability Series]. New York: New York University Press.

Co-edited by Paul K. Longmore (Professor of History and Director of the Institute on Disability at San Francisco State University) and Lauri Umansky (Associate Professor of History at Suffolk University and the author of Motherhood Reconceived), this volume, containing a collection of fourteen essays, contributes to the academic debate on the history of disability in the United States. The volume explores the complex meanings of disability as identity and cultural signifier in American history. Rejecting the historical examination of disability based on medical pathology, the contributors to this collection offer a new approach that examines social, cultural, and political factors.
  
The introductory chapter by the editors emphasizes that “…like people of color, people with disabilities have complex and often hidden histories; these need to be found and explained. Like gender, like race, disability must become a standard analytical tool in the historian's tool chest.” They advocate for the need “to join the social-constructionist insights and interdisciplinary of cultural studies with solid empirical research as we analyze disability's past.”

The fourteen essays here are arranged both chronologically and thematically. The timeline runs from the early 19th century to the present, with a majority of the pieces situated in the late 19th to early 20th centuries. These essays have been divided in three parts and the thematic groupings have been titled as (1) "Uses and Contests," (2) "Redefinitions and Resistance," and (3) "Images and Identities.” As explained by the editors, while these overarching themes appear in each of the historical periods in question, they seem to emerge with particular force in the 19th century, at the turn of the century, and in the mid-to-late 20th century, respectively.

 
Lonsdale, S. (1990). Women and disability. New York: St. Martin's Press.

Lonsdale explores how women with physical disabilities experience the double discrimination of being both a woman and a person with a disability in society. Placing physical disability in a social and political context rather than an individual one, she uncovers how women with disabilities have been rendered invisible, how they see their self image and body image, how physical disability often leads to dependence, and how women experience a loss of civil liberties and how they face discrimination. Lonsdale also considers the ways in which these situations can change for women; specifically, how policy practices can change so women can achieve greater independence. Chapters include subjects such as the social context of disability, invisible women, self-image and sexuality, employment, financial consequences of disability, discrimination, and independence.
 

Luczak, R. (1997). Ten reasons why Michael and Geoff never got it on. In K. Fries (Ed.), Staring back: The disability experience from the inside out (pp. 264-277). New York: Plume.

An ironic and sad short story about a deaf man and a hearing man who, though very attracted to each other, do not become lovers.  Also in Staring Back:  Gay/lesbian poets Kenny Fries, Adrienne Rich, Tim Dlugos, and Elizabeth Clare.
 

Makas, E., & Schlesinger, L. (Eds). (1996). End results and starting points: Expanding the field of Disability Studies. Richardson, TX: Society for Disability Studies.

This edited book is comprised of chapters from extended abstracts of some of the presentations given at the Society for Disability Studies in Rockville, Maryland in 1994. The authors discuss numerous topics relating to Disability Studies, although the focus is almost exclusively physical disabilities. The book is divided into sections, including: Disabling and Nondisabling Images of Disability, Family Reactions to Disability , Cultural Differences in Response to Disability , Acknowledging Challenges to Self Determination , A Progress Report on the ADA , Increasing Access to Services , Designing Relevant Research , Expanding Approaches to Disability , Contact and Communication as Vehicles for Change, Self Definition and Self Support, and The Power of Community as an Agent of Social Change.

 
Matson, F. (1990). Walking alone and marching together: A history of the organized blind movement in the United States, 1940-1990 (1st ed.). Baltimore: National Federation of the Blind. Also available in public domain on the website of the National Federation of the Blind at: http://www.nfb.org/books/books1/wamtc.htm

Written by Professor Floyd Matson who happens to be a former student and colleague of Professor Jacobus Ten Broek (founder of the National Federation of the Blind [NFB] in 1940), this huge volume is a nice compilation and synthesization of various important speeches by the leaders of NFB and other relevant documents dealing with various core issues in the field of blindness from 1940 to 1990. The book captures the history of the NFB, the largest national advocacy organization of the blind in United States. As the author himself summarizes, “this book is the story of those fifty years of Federationism in America: the history of a unique social revolution, democratic and nonviolent but not always peaceful; the drama of an irresistible force, what some call blind force, colliding again and again with the seemingly immovable objects of supervision and superstition; and the narrative of a minority group once powerless, scattered, and impoverished coming together as a people and forging an independent movement, gaining self-expression and learning self-direction, proclaiming normality and demanding equality.”  

 
Meekosha, H. (1998).  Body battles: Bodies, gender, and disability. In T. Shakespeare (Ed.), Disability studies reader: Social science perspectives (pp. 163-180).  London & New York, NY: Cassell.

Calls for the need for a feminist theory of embodiment complicated by insights gained from Disability Studies.

 
Minow, M. (1990). Making all the difference: Inclusion, exclusion, and American law. Ithaca, NY: Cornell University Press.

Martha Minow, a renowned Harvard Law School professor, takes a close look at the way our legal system operates in dealing with people on the basis of race, gender, age, ethnicity, religion, and disability. Minow confronts a number of dilemmas of difference resulting from contradictory legal strategies--strategies that either acknowledge or ignore difference when attempting to correct inequality. She explores the historical sources of ideas about difference and offers new ways of thinking about difference. Minow’s book is a brief for a new jurisprudence that recognizes and respects people’s difference.

Minow is interested in how people’s differences are shaped and misshaped by the way the law treats difference. Literary and feminist theory, as well as anthropological and social history, informs Minow’s work; she identifies the unstated assumptions about difference that tend to perpetuate discrimination through the very reforms that attempt to eliminate it.  Education for children with disabilities, bilingual education, and Native American land claims are among some of the problems Minow discusses from a fresh perspective.
 

Mirzoeff, N. (1995).  Framed: The deaf in the harem. In J. Terry & J. Urla (Eds.), Deviant bodies: Critical perspectives on difference in science and popular culture (pp. 49-77). Bloomington, IN: Indiana University Press.

Historical account of how deafness and difference served to shore up Western ideas about normalcy.


Mitchell, D. T., & Snyder, S. L. (Eds.). (1997). The body and physical difference: Discourses of disability [The Body, In Theory: Histories of Cultural Materialism]. Ann Arbor: University of Michigan Press.

This collection of fifteen essays explores the subject of human disability by focusing on the representations of disability in literature and art throughout history. It aims to introduce Disability Studies to the humanities and to challenge conceptions of physical and cognitive difference that strengthen definitions of “normal” based on stigmatization of the “other.” In outing discourses of disability that perpetuate the dominant ideology of ableism, the contributors call for new conceptions of the disabled body in the arts and the rightful place of Disability Studies within the humanities. This compelling volume is split into two sections that break down the political economy of representations of disability: Part 1, Representations in History and Part 2, A History of Representations . Authors include Martha Edwards, Martin S. Pernick, Paul K. Longmore, Felicity A. Nussbaum, Jan Gordon, and Rosemarie Garland Thomson.

 
Morris, J. (1993). Feminism and disability. Feminist Review, 43 , 57-70.

The author discusses the absence of women with disabilities from feminist scholarship and feminist theory. Morris claims that a significant failure of feminism is that it fails to incorporate disabled women into its politics, theory, research, and methodology. She argues that feminist theory would benefit from the inclusion of the concerns and experiences of disabled women, and that feminist theory and feminist methodology have major contributions to make to disability research. The author discusses her anger and frustration with feminism in two ways: first, that disability is generally invisible from feminism's mainstream agenda, and second, that when disability is a subject of research by feminists, the researchers objectify disabled people so that the research is alienated from their experiences rather than attempting to understand the experiences of disabled women.


Morris, J. (1992). Personal and political: A feminist perspective on researching physical disability. Disability, Handicap & Society, 7 (2), 157-166.

Morris asserts that feminist theory and methodology have largely ignored and alienated women with disabilities and the research conducted by disabled people. She argues that feminist theory needs to take up the challenge of applying its principles to the study of disability and to examine the lives of disabled women. In turn, Morris feels that disabled women and disability research in general has much to learn from feminist methodology; mainly the principle of making the personal political. In addition, Morris outlines the role she sees for nondisabled researchers interested in researching disability-related issues. She views the role of the nondisabled researcher as an ally, and calls on nondisabled as well as disabled researchers to continue to study the ways in which the nondisabled society oppresses its members with disabilities. Lastly, she argues that disability research is of great importance in the general understanding of the perpetuation of inequalities in society.

 
Morris, J. (1998). Pride against prejudice: Transforming attitudes to disabilities (Reprint ed.). North Pomfret, VT: Trafalgar Square.

Morris, a disabled feminist and activist, provides a feminist analysis to the study of the experiences of women with disabilities. Basing her arguments on the feminist principle that the personal is political, Morris eloquently challenges such issues as prejudice, abortion, and the notion that people with disabilities lead lives that are not worth living. She further discusses the history of people with disabilities in institutions and under the Nazi regime. Morris also examines the meaning of disability in Western culture and the meanings of history of segregation, dependence, and an emerging independence of people with disabilities. Pride Against Prejudice is a commentary on political activism and rights, and stresses the need to fight back against the prejudice, stereotypes, and oppression of an ableist culture.

 
Nagler, M. (Ed.). (1993). Perspectives on disability (2nd ed.). Palo Alto, CA: Health Markets Research.

In this second edition edited by Mark Nagler, he once again explores the meaning of disability in our society. Using an interdisciplinary perspective, he offers articles by sociologists, psychologists, therapists, and others to explore the ways in which disability is constructed and understood. The book includes a foreword by Evan Kemp Jr. and an introduction by Nagler. He divides the book into the following sections: “What It Means To Be Disabled,” “Society and Disability,” “The Family and Disability,” “Sexuality and Disability,” “Medical and Psychological Issues and Disability,” “Education, Employment, Social Planning and Disability,” and “Legal And Ethical Issues and Disability.” The selections for this second edition are good, but there are not many articles relating to people with developmental disabilities. This is the one main weakness of this text.

 
Nielsen, K. (2001). Helen Keller and the politics of civic fitness.  In P. K. Longmore & L. Umansky (Eds.), The new disability history: American perspectives (pp. 268-290). New York: New York University Press.

Explores why, despite her affiliation with a range of radical social and political identities, Helen Keller failed to bring such politicized understandings to the topic of disability or blindness.
 

O'Brien, R. (2001). Crippled justice: The history of modern disability policy in the workplace. Chicago: University of Chicago Press.

Inspired by the lack of change and negative reaction after the passage of the Americans with Disabilities Act of 1990 (ADA), O’Brien traces the history of people with disabilities in the workplace from World War II to the present. From normalization and vocational rehabilitation to a lack of support for rights-oriented disability policy, she identifies the roots of a perpetuated inequality at the workplace in society’s attitudes toward disability. This book outs societal resistance to disability rights by examining the social and political implications of the historical debate for civil rights and its continuation today. Central to this current debate is the state of the ADA, and O’Brien clearly describes the dangers of where we are so that we can work to overcome these barriers in future successes.

 
O’Connor, E. (2000). Raw material: Producing pathology in Victorian culture. Durham, NC: Duke University Press.

Focuses on the cultural production pathology in Victorian culture.  Includes chapters on Victorian beliefs about the causes of breast cancer, as well as chapters on masculinities and prosthetic technologies.

 
Oliver, M. (1990). The politics of disablement. London: The MacMillan Press.

Michael Oliver, a renowned British disability rights theoretician, gives voice in this book to the challenge disabled people have hurled at the dominant ideology that devalues and demeans disability as a medical condition. Oliver argues that disability is a social problem, and that society needs to change how it conceptualizes and deals with disability. He takes a look at the individualized and medicalized views of disability and describes how they have been produced in a capitalist society. Oliver also analyzes the possibilities of achieving political change in the capitalism of the late 20th century and how the emerging disability rights movement has a role in effectuating change.

 
Oliver, M. (1996). Understanding disability: From theory to practice.   New York: Palgrave.

Michael Oliver, the preeminent British disability rights theoretician, engages in a wide-ranging collection of essays with recent and perennial problems involving disability, citizenship and community care, social policy and welfare, education, rehabilitation, and the politics of new social movements. Reflecting on his own life as a disabled person and theorizing about the broader social, economic, and political aspects of disability, Oliver attempts to deepen and broaden our understanding of disability.

The book consists of eleven essays and represents Oliver’s vision of moving from theory to practice in various contexts such as welfare, education, rehabilitation, and politics. Oliver seeks to apply a materialist analysis to disability issues, rooting his theoretical insights in the current realities of society that impact on disabled people.

 
Pelka, F. (1997). The ABC-CLIO companion to the disability rights movement. Santa Barbara, CA: ABC-CLIO, Inc.

This text is a general introduction to the disability rights movement and the people and court cases that support or challenge it. It includes entries on such people as Ed Roberts and Judy Heumann. The book is organized as a dictionary, and has references from every aspect of the disability rights movement, from court cases to famous people, to historical events and disability culture. It also includes a chronology, beginning with the founding of the American School for the Deaf in 1817 and concluding in 1996.


Pernick, M. S. (1996). The black stork: Eugenics and the death of "defective" babies in American medicine and motion pictures since 1915. Oxford and New York: Oxford University Press, Inc.

Based on extensive research, this text uses the story of a Chicago surgeon who allowed the death of the infants he diagnosed as so-called "defectives" in the 1910s. The case was well publicized through the print and film media. The author goes into depth to analyze the broader questions on how eugenics became linked with euthanasia and social prejudice, how medicine influences modern culture, and how mass culture redefined key medical concepts. As the author summarizes in the first chapter, the book explains: “’Mass culture,' which includes any production made for a mass audience whether or not it was demonstrably ‘popular’ in origin, constituted a crucial battleground on which professionals, popularizers, journalists, censors,   and audiences struggled to shape the meanings of ‘eugenics’ and ‘euthanasia’ and to define the connection between them.” This text is a great source to understand the eugenics movement and the role of film media in the pre-Nazi era since the 1910s, particularly for those in biomedical ethics, medical care, disability rights activists, and film enthusiasts.

 
Reinders, H. (2000). The future of the disabled in liberal society: An ethical analysis. Notre Dame, IN: University of Notre Dame Press.

Hans Reinders, Professor of Ethics and Mental Disability at the Vrije Universiteit in Amsterdam, shows the meaning of life and the place of the disabled person cannot adequately be understood within liberal society. As Reinders argues in his book, liberal society gives us two conflicting messages: on the one hand, it encourages prenatal diagnosis and selective abortion, but on the other hand it breaks down barriers so as to help improve the lives of people with disabilities. This is a philosophical treatise in three parts in which Reinders shifts the discussion from the medical paradigm of disability to the paradigm of normalization where potential for life and love is emphasized and valued. Given the Human Genome Project that seeks to uncover the billions of genes that regulate human life and that seeks to give humankind the power to correct physical and mental “anomalies,” Reinders raises very interesting philosophical questions about liberalism, morality, genetics, reproduction, dependency and responsibility for others.  


Rothman, D. J., & Rothman, S. M. (1984). The Willowbrook wars: A decade of struggle for social justice. New York: Harper & Row, Publishers.

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.


Russell, M. (1998). Beyond ramps: Disability at the end of the social contract. Monroe, ME: Common Courage Press.

Written in the immediate post-ADA era in the second half of the 1990s, through a radical perspective based on the political economy approach, this book vividly exposes the evils of a capitalistic and charity model and its impact on the marginalized people such as the poor, the elderly, and particularly people who are disabled. The author questions the rhetoric of civil rights as enshrined under ADA in the absence of concrete affirmative action to bring about a significant change in the lives of disabled people in United States. She makes reference to the models of social policies in a country like Sweden to cite an example of greater social justice in regard to the treatment of the disabled.

 
Schlesinger, L., & Taub, D. E. (Eds.). (2003). Instructional materials for sociology and Disability Studies. Washington, DC: ASA Teaching Resources Center.

This packet includes a broad array of information related to teaching sociology and Disability Studies. The information is organized into the following sections: Editors’ Introduction; Introductory Articles; Disability Studies: Interdisciplinary and International Perspectives , including articles on Disability Studies, syllabi for Disability Studies courses, syllabi for other interdisciplinary courses, and syllabi for courses taught outside the United States; Sociology of Disability Courses , including syllabi for sociology of disability courses and syllabi for courses on social psychology and disability; Sociology and Disability Courses, including a syllabus for a course on the sociology of Deafness and Deaf people, syllabi for courses on health and disability, syllabi for courses on gender and disability, syllabi for courses on social policy and disability, and syllabi for courses on representations of disability in literature and the arts; Disability Studies in General Sociology Courses , including articles on the inclusion of disability and syllabi for general sociology courses; Exercises and Assignments , including book reviews, exercises, assignments that focus on writing, media, film, and videos, and other projects; Additional Resources , including articles, recent publications and bibliographies, journals and magazines, and films, music and art.


Scotch, R. K. (2001). From good will to civil rights: Transforming federal disability policy (2nd ed.) [Health, Society, and Policy Series]. Philadelphia: Temple University Press.

First published in 1984, this book was a landmark contribution to Disability Studies at a time when the disability rights movement was gaining momentum in the United States. In its first edition (1984), the author traced the changes in federal disability policy, focusing on the development and implementation of Section 504 of the Rehabilitation Act of 1973. The second edition (published in 2001) includes an added epilogue which briefly touches upon the effects and disappointments associated with the Americans with Disabilities Act, passed in 1990, in the context of the continuing movement to secure full civil rights for people with disabilities in the 1990s.


Shakespeare, T. (Ed.). (1998). The disability reader: Social science perspectives. London and New York: Cassell.

This reader offers to the student or researcher new to the field a broad introduction to Disability Studies from a social science perspective. The volume focuses on Disability Studies as it has evolved in Britain. In the “Introduction,” the editor describes the book as promoting a dialogue between new disability researchers, the political disability community, and traditional academic approaches. The book is composed of three parts. Part One contains two articles that provide a background to the origins and development of Disability Studies. Part Two attempts to cover the range of approaches within contemporary Disability Studies, including sociology, education, geography, and cultural studies. The final part, which contains five chapters, discusses various controversies and directions for the field.  The editor does not claim this collection to be either comprehensive or exhaustive, but rather to offer an “introduction to the types of intellectual and political engagements which are taking place…”

 
Shakespeare, T., Gillespie-Sells, K., & Davies, D. (1996). The sexual politics of disability: Untold desires. London: Cassell Publications.

One of the authors of this British book is Kathy Gillespie-Sells, a lesbian with a disability. She also runs Regard, an organization and campaigning group for lesbians and gay men with disabilities. Regard’s email address is regard@dircon.co.uk . Chapter 6, “Double the Trouble?”, is about being gay or lesbian and disabled. Lesbian, gay, and bisexual accounts occur elsewhere in the book, but this chapter deals exclusively with their issues, including community access, prejudice against disability, choosing a living situation, and practical issues such as how one can meet people when he or she is accompanied by personal assistants.

 
Shapiro, J. P. (1993). No pity: People with disabilities forging a new civil rights movement. New York: Times Books.

This well-written book presenting a nice account of the disability rights movement was published soon after the passing of the ADA. The author is a well-known journalist who was covering social issues for the U.S. News & World Report at the time of the writing of this book. It is a product of the author’s research of five years which involved over 2,000 interviews with hundreds of disabled people. Written in People First language and based on the “minority model” approach, the book vividly and succinctly covers the disability rights movement primarily since the late 1960s onward leading to the passing of the Rehabilitation Act of 1973, the Education for All Handicapped Children Act (1975) and culminating in the passing of the ADA.

 
Shildrick, M., & Price, J. (1999). Breaking the boundaries of the broken body. In J. Price & M. Shildrick (Eds.), Feminist theory and the body: A reader (pp. 432-444). London and New York: Routledge.

Argues for a radical politics of disability that conceives disability as a transgressive category that “demands that we rethink not simply the boundaries of the body, but equally those between sameness and difference, and indeed self and other” (p. 442).


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.


Snyder, S. L., Brueggemann, B. J., & Garland-Thomson, R. (Eds.). (2002). Disability Studies: Enabling the humanities. New York: The Modern Language Association of America.

This collection of 25 essays builds on earlier volumes and claims an overdue space for Disability Studies within the humanities. Stressing that disability remains an unspoken topic or stigmatized subject, this collection defines the “universalization of disability across the humanities” and both the need and benefits of studying disability as a subject of critical inquiry and category of critical analysis. It demonstrates how to integrate ideas and representations of disability into all teaching and scholarship, as well as people with disabilities into academia. The essays then become models of disability finally being recognized as an important aspect of diversity and tied to larger social justice values, worthy of the highest scholarship in literary and language studies.

 
Stiker, H. (1999). A history of disability (W. Sayers, Trans.) [Corporealities: Discourses of Disability]. Ann Arbor: University of Michigan Press. (Original work published 1987).
    
Stiker offers a framework for analyzing disability across the ages in this thorough and passionate work. Focusing on cultural reactions to disability from ancient times to the present, he examines the societal assumption that sameness and conformity are ideal, thus preventing the celebration of diversity. He reflects on how attitudes toward disability reveal the true nature of societies and offers plenty of examples suggesting that difference is still demonized, disability stigmatized. He proposes a “discourse of difference” that would allow society to finally achieve its potential and humanity by embracing all members. The book takes on a conversational style but is thorough. It includes a foreword by David T. Mitchell and the chapters The Bible and Disability: The Cult of God; Western Antiquity: The Fear of the Gods ; The System of Charity ; The Classical Centuries: The Chill ; and The Birth of Rehabilitation .

 
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.


Thompson, K., & Andrezejewski, J. (1989). Why can’t Sharon Kowalski come home? Denver, CO: Spinsters Ink.

This book by Karen Thompson, a woman whose lover Sharon Kowalski was injured in a car accident, tells the story of her fight to have authority over Sharon’s care and living situation after her brain injury. Kowalski’s parents, to whom she had not yet come out, refused to acknowledge their relationship and took steps to prevent Thompson from visiting or having any say in their daughter’s care. Their low expectations of their disabled daughter and of the rehabilitation system, combined with their disbelief and homophobia, resulted in their daughter being warehoused without the opportunity to see many of the people she loved. The book was published before Thompson successfully obtained guardianship. A powerful and descriptive narrative.


Thomson, R. G. (1997). Extraordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University Press.

This is a key work in the field of literary criticism and Disability Studies. It examines literary and cultural representations of physical disability, framing disability within a cultural and minority context rather than a medical one. The book contains three parts. Part I, Politicizing Bodily Differences , provides an introduction as well as a theoretical framework.  Part II, Constructing Disabled Figures: Cultural and Literary Sites, examines American freak shows, as well as representations of disability in literature, including Harriet Beecher Stowe, Toni Morrison, and Audre Lorde. In a brief conclusion, the author summarizes her intent in this writing “to critique the politics of appearance that governs our interpretations of physical difference, to suggest that disability requires accommodation rather than compensation, and to shift our conception of disability from pathology to identity.”


Thomson, R. G. (2001).  Seeing the disabled: Visual rhetorics of disability in popular photography. In P. K. Longmore & L. Umansky (Eds.), The new disability history: American perspectives (pp. 335-374). New York: New York University Press.

Illustrates taxonomy of four visual rhetorics employed in the visual representation of disability in popular photography.

 
Tremain, S. (Ed.). (1996). Pushing the limits: Disabled dykes produce culture. London: Women’s Press.

This anthology begins with “Introduction: We’re here. We’re disabled and queer. Get used to it,” by Shelley Tremain, and is divided into seven sections: searching; becoming; loving; positioning; enduring; not surrendering; and testifying, with five to twelve pieces by disabled dykes in each section. This sensitive, intelligent, and questioning collection addresses topics such as the power and importance of language, the misuses of power, the corruption and convenience that governs the medical profession, and the passive disinterest of non-disabled sisters. The selections include essays, poetry, stories, and personal narratives.

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

James W. Trent, Jr. is an Associate Professor of Sociology and Social Work at Southern Illinois University at Edwardsville and also happens to be the 1995 winner of the Hervey B. Wilbur Award of the American Association on Mental Retardation. In this well documented study, Trent uses public documents, private letters, investigative reports, and rare photographs to present an interesting historical analysis of mental retardation and the evolution of the institutional system for people labeled mentally retarded in industrialized American society. The book goes into depth about the process of institutional treatment of people labeled intellectually disabled in the United States over the past 150 years and vividly traces the practices leading to an institutional system. It is a great contribution to the social history of the United States and an excellent source for students, researchers, human-services professionals, as well as historians engaged in the area of intellectual disabilities.


Vernon, A. (1998). Multiple oppression and the disabled people’s movement. In T. Shakespeare (Ed.), The disability reader: Social science perspectives (pp. 201-210).  London & New York: Cassell.

Advocates for an analysis of simultaneous oppressions of race, gender, sexuality, age, and class in Disability Studies scholarship and activism.

 
Wendell, S. (1999).  Feminism, disability, and transcendence of the body.  In J. Price & M. Shildrick (Eds.), Feminist theory and the body: A reader (pp. 324-334). London and New York: Routledge.

Critiques contemporary feminist theorizing around the body as uninformed by the lived experience of women with disabilities and argues for a rethinking of the possibilities for strategic transcendence of the body in ways that do not necessarily lead to alienation.


Wendell, S. (1997). Toward a feminist theory of disability. In L. J. Davis (Ed.), The Disability Studies reader (pp. 260-278). New York: Routledge.

The author argues that disability is not a “biological given,” rather it is a social construction of biological reality (like gender) and because of this, the fact that 16% of women have disabilities, and that feminist thinkers have raised the most radical issues concerning cultural attitudes to the body, a feminist theory of disability is needed. Wendell argues that those with disabilities are constructed as “the other” and because of this are seen as failing to control their bodies (control of our bodies is demanded by society) and as symbolizing the threat of pain, limitation, dependency, and death. She calls for people with disabilities and their knowledge and experience with their bodies to be fully integrated into society, and concludes that in this way bodies would be liberated.  


Wendell, S. (1996). The rejected body: Feminist philosophical reflections on disability. London and New York: Routledge.

In The Rejected Body, Susan Wendell, a woman with Chronic Fatigue Syndrome, draws parallels between her own experiences with illness to feminist theory and Disability Studies. She argues (as many others have), that feminist theory has neglected to incorporate the perspectives and experiences of women with disabilities, and that these perspectives must be included in future discussions of feminist ethics, the body, and the social critique of the medical model. Wendell also examines how cultural attitudes about the body contribute to disability oppression and society's unwillingness to accept different types of bodies.

 
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."

 

Autobiographies/Personal Narratives

This section highlights autobiographies and personal narratives of people with disabilities.
 

Barron, J., & Barron, S. (1992). There’s a boy in here. New York: Simon & Schuster.

There’s A Boy In Here tells two stories: that of the mother of a child with autism, and that of the child. The book is mainly told from the mother’s point of view, recounting her gradual recognition that something was “wrong” with her baby. Judy Barron describes in great detail her son Sean’s difficult behaviors, his tantrums, his compulsions and fixation, and his seeming indifference to his family, and her own tumultuous efforts to simultaneously understand his behaviors and help him diminish them. Sean then retells some of these parent accounts with his own memories of these events; in particular, he emphasizes how these fixations and behaviors were not only pleasurable for him, but were also an attempt to regulate and control his environment and lessen the possibilities of failure for him. Judy chronicles the family’s treatment at the hands of psychology and medical professionals—Judy is repeatedly addressed as “Mother,” not by her own name, and Sean’s autism is blamed on her—and Sean writes of his fear and distrust of these professionals. Except for nine months he spent in a residential school, Sean was fully included in general education throughout his schooling, and Sean provides a detailed perspective of his classroom experiences. The cover of the book states that it tells “the story of his emergence from autism” and the narrative hinges upon Sean’s realization that he must gain control of his compulsions, his fears, and his behaviors in order to “breakthrough” and “overcome autism.” While the account provides the perspectives of both the parent and the autistic person, the narrative ultimately reinforces the idea that autism is something to be cured, to be overcome, to be vanquished.                         

 
Blackman, L. (1999). Lucy’s story: Autism and other adventures. Mt. Ommaney, Australia: Book in Hand.

In her autobiography, Lucy Blackman gives a very detailed insider’s view of autism before and after she learned to communicate through typing.  Blackman adeptly discusses the social construction of speech and how her lack of a method of communication allowed the process of the experience of receiving and speaking to pass her by in her early years.  In her later years, she developed a friendship with an Australian writer who became her mentor in her burgeoning desire to be a writer.  This book, as well as being a fascinating autobiographical narrative, is essential reading on the aspects of sensory discrimination, issues of visual perception, and discussion of the rituals associated with autism.  Blackman also provides an in depth discussion of her school placements, what worked, what did not work in her school settings, and how her family relationships bridged both her school and communication gaps.  A majority of the book provides a comprehensive discussion of the method of facilitated communication (FC).  Blackman goes into meticulous detail as to how she came to learn FC and she takes text from when she first acquired the method and analyzes it to show the process of communication.  In this discussion she provides her own explanation for message passing errors (language keys, personal communication perceptions, vision issues), and discusses how she used the method in high school—what types of classroom situations and student-teacher/home communication methods were successful and not.  Blackman also gives the reader an honest and sometimes humorous account of her relationship with her mother and sisters.      

 
Bérubé, M. (1996). Life as we know it:  A father, family, and an exceptional child. New York: Vintage Books.

This remarkable book is a father's story of the life of his 4-year-old son James, who has Down syndrome. It is far more than just a personal memoir of his son's birth and young life. In following the developmental stages, social experiences, and involvement with social services that James passes through, Bérubé explores their social implications, including such topics as IQ testing, the politics of education, disability law, social services, health care, and entitlements. Implicit in these discussions are not just his own family's experiences in these realms, but also concepts such as social justice, what it means to be human, and what kind of society is valued and by what means we determine this value.    

 
Callahan, J. (1989). Don’t worry, he won’t get far on foot. New York: Vintage Books.

Equal parts laugh-out-loud funny and angering to the point of disbelief, this is John Callahan’s story told in his own words and pictures. John is a cartoonist whose work not only challenges but attacks and explodes social norms. He is also a quadriplegic and recovering alcoholic who has suffered through abusive support providers, endured battles with the welfare system, maintained his vicious sense of humor, and emerged from some difficult times happy, successful, and determined to change prevailing attitudes about disability, potential, normalcy, and employment. He shares all of his experiences and lessons learned in a straightforward way that does not allow pity or ego to enter the picture. He describes his own brand of faith and sheds some light on our collective humanity.

 
Fries, K. (1997). Body, remember. New York: Plume.

In this memoir, Kenny Fries explores his life and experiences with his disability. Having been born with congenital deformities that affected the lower part of his body, Fries searches medical records, talks with family and friends, and examines past relationships in order to better understand his disability. In addition to an understanding of his physical body, Fries also explores his sexuality and personal relationships. This is a memoir about disability, but it is also about the discovery and understanding of his identity.


Grealy, L. (1994). Autobiography of a face. New York: HarperCollins.

Autobiography Of A Face is Lucy Grealy’s compelling account of her experience with childhood cancer. The narrative’s starting point of view is that of Grealy as a child, from her early diagnosis at age nine, replete with the singular distinction of being sick and thus being special and not having to turn in a book report, through surgery that removed half of her jaw, almost three years of radiation and chemotherapy, to her growing awareness that she is alone and experientially set apart from her family, her classmates, and her physicians. The book chronicles her hospital and school experiences (an encounter with her junior high guidance counselor is particularly poignant) as well as her internal struggle to eschew the mirrors that reflect difference, what she gradually realizes is, by society’s standards, her “ugliness” or to embrace the mirrors that reflect liberation from image and instead reflect the face of the self. Many issues converge in this account, including family attitudes (bravery, not crying, and minimizing expressing pain are valued), the cruelty of children, the medicalization of difference (Grealy underwent 15 years of surgery to “improve” her appearance), beauty and Beauty, and self-awareness and freedom from the dictates of society.

 
Grandin, T. (1995). Thinking in pictures: And other reports from my life. New York: Bantam Doubleday Dell Publishers Groups, Inc.

Thinking In Pictures is about the childhood and development of Temple Grandin, a woman with autism. She likens herself to the robotic character, Data, on the science fiction television program, Star Trek: The Next Generation . She says words are like a second language to her, noting that she thinks primarily in images. Grandin, who holds a Ph.D. in animal science and has designed equipment that revolutionized the livestock industry, proposes that genius and autism may sometimes be closely related.


Hale, M .J. G., & Hale, Jr., C. M. (1999). “I had no means to shout.” Bloomington, IN: 1st Books.

Charles Hale, a man with autism, discovered the communication technique of facilitated communication (FC) when he was 36 years old, and this book chronicles his life before and after he began to use FC through both Charles’ and his mother’s narratives. When he was a child, Hale was diagnosed as “trainably mentally retarded,” and it was not until he began using FC that he discovered he was autistic. The book opens with a history and discussion of the facilitated communication method and the controversy surrounding the method. While the book is primarily written by Mary Jane, Charles’ comments are liberally spread throughout the text. While some of Charles’ narrative has been edited for easier reading, the authors make a conscious choice to leave many of Charles’ passages as originally typed, so that reader can see the clear intended meaning through errors made while using the method. The narrative provides, in Charles’ voice, a fascinating and detailed insiders’ perspective to what autism feels like, how Charles’ apraxia and dyspraxia have affected his life and his communication, and how FC allows Charles not to emerge from autism, but rather, to express himself “as the intelligent, cognizant man he really is.”                

 
Hockenberry, J. (1995). Moving violations: War zones, wheelchairs, and declarations of independence. New York: Hyperion.

Moving Violations is an honest and often humorous account of Hockenberry’s life as a man with a disability. He takes the reader on a journey in which he reflects upon the events in his life, from the accident that, at age 19, caused a spinal cord injury, to his work as a nationally renown broadcast journalist. He does not flinch at talking about the personal aspects of disability. And he shares the adventures of his career, such as riding a mule up a mountainside with Kurdish refugees who were being driven from their land by the Iraqis after Desert Storm. Hockenberry also explains how his disability, rather than limiting him, is a window through which he frames his view of the world--how it expands his gaze and gives him insight that defines who he is and what he does.

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

In this article, Michael Kennedy discusses his experiences being labeled under the “blanket term disabled.” First, he talks about ways that privacy is invaded under the disability blanket. This includes the degrading experience of having to attend meetings and deal with reams of paperwork related to other people’s ideas about goals for you. Second, he notes that under the disability blanket you are always being evaluated, but are hardly ever asked to evaluate the services you get. Third, everything you do must be part of a “program.” He concludes by stating, “If we could get out from under the disability blanket, the world would look different for us. We’d still get services but they wouldn’t be programs…Professionals would treat us like they would want to be treated…We’d hear about more of our options, and we’d get support in choosing what best fit our wants and needs.”

 
Lubchenco, L. O., & Crocker, A. C. (1997). Bus girl: Poems by Gretchen Josephson. Cambridge, MA: Brookline Books.

This book consists of 25 poems written by Gretchen Josephson, a woman with Down syndrome. She started writing poetry while still in her teens, when she began a job as a bus girl at a restaurant. Her poetry chronicles her life experiences with family, friends, love, and other areas of life. The editors have divided her poetry into sections, which include Bus Girl , Love for Always, Vacations and Travel , Family, Death and Greed , Faith, and Other Poems . Unlike other artistic works such as Musn’t Grumble edited by Lois Keith, Josephson does not write about disability. Instead, she simply creates poetry about her life.


Mairs, N. (1997). Waist-high in the world: A life among the disabled. Boston: Beacon Press.

Nancy Mairs, a brilliant essayist and poet who has authored six previous books, reflects upon her experiences as a woman with multiple sclerosis in Waist-High In The World.  She discusses such topics as adjusting to change, reconciling body image, experiencing sexuality and pleasure, and seeking equality and justice. She also probes other disability issues, such as assisted suicide and selective abortion, and she revisits an article she once wrote for Glamour magazine that focused on young people with disabilities.

 
Mason, M. (2000). Incurably human. London: Working Press.

Simultaneously personal and philosophical, this book is both a celebration of and call for inclusive communities and schools. Micheline Mason shares some of her experiences growing up and living with a disability in London. She challenges the dominant ideology of the medical model that suggests that she and others with disabilities are broken and need to be fixed, stressing that she is fully human as she is and does not need or desire a cure. The book chronicles her personal journey from experiencing segregation and discrimination to living a full life, fighting prejudice, and working for inclusive societies. She has dedicated the book to Marsha Forest, Jack Pearpoint, Judith Snow, John O’Brien, and Herb Lovett who “flew in as a team, crashed through our British reserve and, in their generosity, gave us the language and the tools of inclusion.” The book is divided into four sections: Exclusion Harms Everyone, The Inclusion Movement , Inclusive Education , Glimpses of a Possible Future.


Mukhopadhyay, T. R. (2000). Beyond the silence: My life, the world and autism. London: The National Autistic Society.

This work is an autobiographical narration of a young poet who happens to be an autistic child and it includes a collection of his selected poems with a foreword by Lorna Wing. Rajarshi Mukhopadhyay, known as Tito, wrote this fascinating narration before he was 12 years old in July 2000. Tito was also a subject of one hour-long BBC documentary and various newspaper articles including one published in the New York Times . This work represents a realistic presentation of what kind of struggle he and his parents had to go through during his early childhood in his native country (India) where intellectual disabilities like autism are hardly known or recognized. As pointed out in the editor’s note, “To retain the integrity of Tito’s writing, very little has been changed. Changes have only been made to ensure clarity, and [ ] have been used where information has been added.” The work provides a vivid description of the experience of living with autism in a country like India and Tito’s thoughts about the meaning of life presented in a highly philosophical and poetic manner. The book is divided into four sections. The initial two sections present Tito’s autobiographical narration while the remaining two sections present a collection of his selected poems.  


Murphy, R. F. (1987). The body silent: An anthropologist embarks on the most challenging journey of his life: Into the world of the disabled. London and New York: W.W. Norton.

Robert Murphy, an anthropologist by trade, eloquently and honestly describes how paralysis--and all disability--affects identity and interaction with others based on their reactions to disability. This book is his anthropological field trip to the world of disability, detailing his experiences and thoughts before, during, and after he becomes paralyzed during his 40s. The journey is compelling in itself and also offers a backdrop and source for inquiry into notions of stigmatization, independence/dependence, physical condition, and normalcy. This is a powerful book in which Murphy not only shares his personal story but deals with and challenges the ableism and medical model of disability he endures once he becomes disabled himself. It is split into three sections of three chapters each: I. In the Beginning (Signs and Symptoms, The Road to Entropy, The Return) II. Body, Self, and Society (The Damaged Self, Encounters, The Struggle for Autonomy) III. On Living (The Deepening Silence, Love and Dependency, There’s No Cure for Life).


Nolan, C. (1987). Under the eye of the clock. New York: Arcade Publishing, Inc.

Christopher Nolan is an award-winning Irish poet and novelist who has cerebral palsy, uses a wheelchair, and writes with a stick attached to his forehead while someone cups his chin for stability. Under the Eye of the Clock is his autobiography (told as the story of Joseph Meehan), a lyrical and metaphorical account of his family, schooling, faith, and emergence as a celebrated poet. Joseph communicates with eye movements, facial expressions, and body language that his family and friends decode, and Joseph used his language to tell his family and teachers at the Central Remedial Clinic School that he wanted to attend the local comprehensive school. While his family is completely supportive and respects Joseph’s autonomy, the board repeatedly turns down Joseph’s application, but Joseph eventually is accepted at the comprehensive school and finishes his primary education there. Nolan recounts his friendships at school (including his and his mates’ adventures with smoking) and how he was fully included in school trips and activities. Nolan also tells of his struggle to communicate outside the realm of gestures, through intense practice and training at typing.  Typing releases the poet within, and Joseph/Nolan writes his first book of poetry at age 15. While his accomplishments are often framed in the International Year of Disabled People, distinguished writers such as Brendan Kennelly recognize Nolan as a writer and poet outside the framework of disability.        


Panzarino, C. (1994). The me in the mirror. Seattle: Seal Press.

Written by writer, disability activist, and artist Connie Panzarino, The Me In The Mirror is an autobiography of the life of this amazing woman.  Born with Spinal Muscular Atrophy Type III, a rare disease, Panzarino describes her life as one of struggles and triumphs, and tells the stories of her relationships with her family, friends, lovers, her turn to lesbianism, and of her years of pioneering work in the disability rights movement.  This book is a must read for anyone interested in understanding the experiences of women with physical disabilities.

 
Sienkiewicz-Mercer, R., & Kaplan, S. B. (1989). I raise my eyes to say yes. New York: Avon Books.

This is Ruth Sienkiewicz-Mercer’s powerful account, written with the assistance of Steven Kaplan, of her incarceration in an institution for people labeled mentally retarded.  She vividly describes the abuse and neglect she experienced in the institution, and the isolation from family and community.  However, the book ends with her description of her successful struggle to gain her freedom, shatter stereotypes, and build a life in the community.  

 
Sinclair, J. (1993). Don’t mourn for us. Our Voice, 1 (3). Syracuse, NY: Autism Network International.

This article is addressed to parents of autistic children. The author begins with a discussion of parents’ grief over having an autistic child. While some amount of grief is natural, he emphasizes that continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child. He urges parents to make radical changes in their perceptions of what autism means: (1) autism is not an appendage, it isn’t something that a person has or is trapped inside; (2) autism is not an impenetrable wall, though relating to an autistic person takes more work and openness to different ways of relating and understandings about relating to one another; and (3) autism is not death, you didn’t lose a child to autism. In conclusion, he urges parents not to mourn for what never was, but to join with their children in an exploration of what is.  

 
Trueman, T. (2000). Stuck in neutral. New York: Harper Collins Publishers.

While this book is fiction, and closer to juvenile/young adult fiction at that, it reads as a first person account. Terry Trueman’s narrator is 14-year-old Shawn McDaniel who has cerebral palsy, cannot control any of his muscles, and does not speak. The story revolves around his father’s belief that he must kill Shawn to “put him out of his misery” despite the obviously positive relationships between Shawn and the rest of his family. Thus, the narration becomes all of Shawn’s thoughts that remain unknown to those around him, and even questioned by some. The book quickly delves in and out of family issues, notions of mental retardation, and quality of life questions. Most importantly, it stresses the importance of making the least dangerous assumption and offers one example of what could be going on when we just don’t know for sure.

 
Williams, D. (1992). Nobody, nowhere: The extraordinary autobiography of an autistic. New York: Avon Books.

Donna Williams, who was diagnosed with autism when in her mid 20s, wrote Nobody, Nowhere in an attempt to understand herself and to explore how she fit into the world around her. She candidly describes the teasing and mistreatment she experienced at the hands of her family and her ability to use role-playing to interact with others. Williams said of her book, “This is a story of two battles, a battle to keep out ‘the world’ and a battle to join it.  I have, throughout my private war, been a she, a you, a Donna, and finally, an I.”

 
Williams, D. (1994). Somebody, somewhere: Breaking free from the world of autism. New York: Times Books.

This autobiography by Donna Williams poignantly and defiantly illustrates her life and struggle with autism. She powerfully articulates her "awakening to the world" and how she fought for others to do the same.  She presents her perspective of autism and reminds readers that it is crucial that they seek to understand her perspective and the perspectives of others with autism rather that imposing their own notions onto someone else.  She asserts that she has taken control of her autism, that it does not control her.

 
Williams, D. (1996). Like colors to the blind. New York: Times Books.

Like Colors To The Blind is Donna Williams