Exploring Disability Identity and Disability Rights through Narratives: Finding a Voice of Their Own

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I witnessed numerous occasions when the teenagers were perhaps unintentionally, but effectively, excluded from conversations. Sometimes they did not have their VOCAs available because of pure practicalities. This might be when driving their wheelchair, doing sports, or when the VOCA battery was flat, and sometimes their communication book was also unavailable.

They were also clear about the need for particular types of behaviour from others in order to support their inclusion in conversation. As a group, they gave me a list of advice for people talking to them, including:. As the fieldwork progressed and I become increasingly familiar with each individual's complex and unique communication style, I reflected on the role of conversational partners as they interact with AAC users. As an anthropologist, I saw my gradual familiarization with the language and culture of AAC as similar to the classic ethnographic experience of exploring a foreign land.

I moved from being a complete outsider who often needed an interpreter to help me, to an insider position, where I sometimes found myself translating what the teenagers were saying for other relative newcomers. I saw that each individual had a spectrum of conversation partners who varied in their level of skill at facilitating conversations with them. By seeing the young people in a wide range of contexts, I saw how variably successful their interactions with others could be.

With family, close friends and those working regularly with them, they were able to have fast, subtle, multimodal conversations. This was possible because these familiar people were expert mediators, who were used to interpreting the meanings of facial expressions, eye gaze, and body movements in concert with output from low- and high-tech aids. Nearly every 'utterance' needs verbalising out loud by the conversational partner to check that it has been correctly understood, and although this sounds cumbersome, it is achieved with speed and fluidity that does not disrupt the flow of conversation.

In contrast, conversations with strangers or the uninitiated are much slower, more jerky and full of misunderstandings, repetitions and often some frustration on both sides. My own skills in becoming a more skilled conversation partner were revealed in the data over time. Upon reviewing audio-recordings of earlier conversations, I saw where I had misunderstood rather telegraphic messages, and had failed to understand individuals' shortcuts or nonverbal messages.

This led me to consider the skills and tasks required by both partners when one person is using AAC. These are summarized in Table 1. Some similar observations have been made by other researchers looking at the process of AAC interaction, but using different mainly psychological or linguistic theoretical frameworks and methodologies Pennington and McConachie , Clarke et al , Clarke and Kirton , Light and Binger Some participants seemed resigned to being misconstrued, and there were various examples during the fieldwork when, in retrospect, I discovered something which revealed that I had misunderstood a previous conversation, although the young person had kept quiet about this.

The teenagers learn to make judgments about what is worth the effort and really important to say and when to let a misunderstanding go. Of course, all conversation and interaction is reciprocal and has an element of interpretation and clarification between the partners involved. However, the possibilities for misunderstanding and for misconstruction of the message are amplified greatly when one person uses AAC. We can see that in co-constructed conversations there is risk that the AAC message may be constructed by the conversational partner in a way that is perhaps close enough to the intended meaning for the AAC user to decide not to correct it.

However, the cumulative effect of these frequent 'miss hits' might be that a quite inaccurate set of narratives about the person starts to be perpetuated. Thus, the AAC user's identity may be more actively externally constructed than is usual. Natural speakers can easily correct and retell stories in their own way, so that they have more control and authorship of their own identity construction.

Some fundamental aspects of the AAC user's identity may be misconstrued because of the challenges of communication. There are recognised issues about authorship and representation in the production of written ethnographic texts generated from the field Clifford and Marcus , Wallman However, these are even more complex in research with AAC users where a verbatim transcription from audio recordings will often only provide the conversation partners' voices if low-tech modes are used , or a complicated series of electronic clicks, spoken letters, and individual words, before the final phrase is built, with VOCA use.

Nonverbal communications such as eye gaze and signing are also problematic to document. For disabled people with few words at their disposal or who use very slow modes of communication, the danger of "putting words into their mouths" is very great Brewster Issues around authenticity and accurate representation are of a very real and ethical nature in this kind of study. AAC users themselves have expressed anxiety about research methods that use 'data' from their VOCAs in ways which they haven't approved Herd and Caryer I realised early in the fieldwork that there is a conflict between accurately and laboriously transcribing every aspect of the AAC users' 'output,' which would preserve authenticity, versus editing and reworking the messages for clarity.

The person in the disabled body: a perspective on culture and personhood from the margins

I sensed that verbatim transcription had more force and gave more sense of a person's individual communication style, and therefore their unique identity, whereas a more 'interpreted' style would be more accessible to readers. With the latter approach the message is maintained, but the minutiae of the process of producing it is lost. After some reflection, I chose mainly to use the latter method, but with the proviso that I should carry out as much 'respondent validation' of the messages as possible, in order to avoid misrepresentation Couser I spent considerable time checking with the teenagers that I had understood what they had said and that they were happy with my rephrasing or addition of conventional grammar.

This was done during our regular conversations, and also during revisiting of data near the end of the fieldwork. Although I was worried that they would find this boring, they were in fact amused and interested in hearing what they had said before. They were not afraid to tweak my representations for accuracy and nuance.

I was very aware that my representation of their voices could either reinforce negative and pathologising stereotypes about them, or conversely serve to humanize them and provide real insight into their lifeworlds and the processes by which their identities are in construction Davis and Watson Recent developments in both low- and high-tech AAC modes allow many possibilities for communication that were previously not available to people with little or no speech. However, these are not a panacea for the difficulty of not being able to talk quickly and easily.

Even with excellent technology, and skilled, subtle usage by the AAC user and their conversation partners, there are complex consequences for the social interactions and identity of those with unusual voices. One positive development is that the most recent technological advances in 'mainstream' computer based technology, such as iPads, text to speech systems etc are beginning to cross over into use for disabled people. This will make the use of technology for communication a more commonplace occurrence.

AAC users may experience less unwanted attention, and the attribution of personhoods that are closer to their own images of themselves. The greater the variety of ways in which those without speech can express their inner language, the more they will be included and recognised as people with voices that should be heard. As Bourdieu says: "Language is not only an instrument of communication or even of knowledge, but also an instrument of power" Voice is then both 'natural' and 'cultural. Being able to tell one's own story is an important part of selfhood and is potentially empowering.

The responsibility of communication partners and researchers is to represent what AAC users say as authentically as possible. Systems of communication which are used in addition to or instead of natural speech. The different methods are called 'modes' and may be low tech, such as signing, gestures, or pictures symbols or letters arranged on a board or book, or high tech devices operated by switches which produced an electronic voice voca.

Most AAC users use a combination of these methods, depending on their skills, the context and the skills of the conversational partner. Typically about words per minute, compared with words per minute for natural speech. The notation convention used here is that all verbatim utterances are marked in italics. Those said with natural speech are in lower case, and those using other low tech modes are indicated as such in brackets.

Whose voice is that? Abstract This paper presents findings about identity, voice and representation arising from a broader ethnographic study with disabled teenagers who use AAC. Introduction This paper presents findings on issues of identity, voice and representation, arising from a broader ethnographic study that explored aspects of identity and the lifeworlds of disabled teenagers using AAC and living in England.

Theoretical background — voice, communication and identity Voice A person's voice is often seen as a window into their mind, and human beings have been seen as definitively 'homo loquens' Fry Augmentative and alternative communication AAC Usually people who are unable to use natural speech well or at all spontaneously develop informal alternative ways to express themselves e.

Symbol output AAC user when, go, shopping, where? AAC user nods yes. Identity Links between thought and language have long been debated and are complex Geertz , Csordas , Goffman Overview of the main study Research aims and questions The study aimed to explore identity and the lifeworlds of teenagers who use AAC. The research questions were: How do young people with severe physical and communication impairments who use AAC see themselves selfhood?

How are young people who use AAC seen by others personhood? What kinds of social relationships do young people who use AAC have? What role does the body play in the development of selfhood, social relationships and personhood for young people who use AAC? What kinds of methodologies work best when doing research with young people with severe communication impairments? Participants Participants were 9 key young people aged years 6 girls, 3 boys. Methods The main research method was participant observation, which took place over an eighteen-month period in the teenagers' homes, schools and extra-curricular clubs.

Overview of the main findings The 5 main themes that emerged were given user-friendly names when they were presented to the teenagers for comments, and so these names have been used subsequently: Whose voice is that? Conclusions of the main study The conclusions of the study were that despite the teenagers' positive and normative views of themselves, they were seen very differently by others, especially those outside their families.

Teenagers' views of their communication During the eighteen months of fieldwork the participants' views and feelings about their communication arose intermittently in many different contexts. Josie I like having a moan! Processes of co-construction — negotiation and collaboration As the fieldwork progressed and I become increasingly familiar with each individual's complex and unique communication style, I reflected on the role of conversational partners as they interact with AAC users.

Some similar observations have been made by other researchers looking at the process of AAC interaction, but using different mainly psychological or linguistic theoretical frameworks and methodologies Pennington and McConachie , Clarke et al , Clarke and Kirton , Light and Binger Some participants seemed resigned to being misconstrued, and there were various examples during the fieldwork when, in retrospect, I discovered something which revealed that I had misunderstood a previous conversation, although the young person had kept quiet about this.

Table 1. What is worth saying? Choose which mode to use Make 'shortcuts' strategically — how much to shorten the message effort vs. Knowing and recognising the different systems used signs, symbols Anticipating meanings too early Misunderstanding, misrepresenting or patronizing the AAC user Being confident in asking and responding in ways which make conversation easy for the AAC user Being able to help when VOCA crashes Imposing own world view on other person or controlling the topic too much Of course, all conversation and interaction is reciprocal and has an element of interpretation and clarification between the partners involved.

Authorship and representation of the research data There are recognised issues about authorship and representation in the production of written ethnographic texts generated from the field Clifford and Marcus , Wallman Conclusion Recent developments in both low- and high-tech AAC modes allow many possibilities for communication that were previously not available to people with little or no speech. Works Cited Allan, M. AAC and Self-Identity.

Communication Matters. Vol 20 3 : Aull Davies, C. Reflexive Ethnography: A guide to researching selves and others. Bohanek, J. Journal of Early Adolescence. Vol 28 1 Bourdieu, P. Outline of a Theory of Practice. Brewster, S. Putting words into their mouths? British Journal of Learning Disabilities. Vol Clarke, M. McConachie, H. Price, K. Views of young people using augmentative and alternative communication systems. Patterns of interaction between children with physical disabilities using augmentative and alternative communication systems and their peers.

Child Language Teaching and Therapy June Clifford, J. University of California Press. Collins, S. Interaction between impaired and unimpaired speakers: Inter-subjectivity and the interplay of culturally shared knowledge and situation specific knowledge. British Journal of Social Psychology. Cohen, A. Self-Consciousness: An alternative anthropology of identity. Couser, G. Paradigms' Cost: Representing Vulnerable Subjects. Vol 24 1 : Cromby, J.

Cyborgs and Stigma; Technology, Disability, Subjectivity. In Gordo-Lopez ,A. Eds Cyberpsychology. Chap 6: Csordas, T. Embodiment and Experience: the existential ground of culture and self. Davis, J. Continuum International Publishing Group. Chap Fry, D. Homo Loquens: Man as a talking animal.

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CUP Forster, C. Goffman, E. The presentation of self in everyday life. Stigma: Notes on the management of spoiled identity. Hammersley, M. Ethnography: principles in practice. Herd, J. The experiences of AAC users. James, A. Learning to Belong: The boundaries of adolescence in A. Manchester University Press. On being a child: the self, the category and the group In Cohen, A. Questions of Consciousness. Chap 3: American Anthropologist. Vol 2 : Jenkins, R. Social Identity. Brookes Pub Co Mackenzie, C.

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Leach Scully. J, Moral Imagination, Disability and Embodiment. Journal of Applied Philosophy. Morris, J.

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Vol 17 5 : Ochs, E. Harvard University Press. Hughes, B. Disability Studies and Phenomenology: the carnal politics of everyday life. Vol 14 5 : Percy —Smith, B. London: Routledge. Pennington, L. Mother-child interaction revisited: communication with non-speaking physically disabled children. Vol 34 4 : QSR International Pty. Ltd Rabiee, P.

Sloper, P. Doing research with Children and Young People who do not use speech for communication. Shakespeare, T. Disability, Identity and Difference. In Barnes, C. Exploring the Divide. The Disability Press. Smith, M. The dual challenges of aided communication and adolescence.

Vol 21 1 : Thomas, N. The ethics of participatory research with children. Thomas, C. Narrative identity and the disabled self In Corker, M. Disability Discourse. Buckingham OUP. Developing the social relational in the social model of disability; a theoretical agenda. Implementing the Social Model of Disability; Theory and research. Wallman, S. In James, A. Hockey, J. Watson, N. Disability and Society. Wickenden, M. Communication Disorders Quarterly. XX X Los Angeles: Consafos. His quest for a cure forces him to completely transform his life, which ultimately becomes the key to his miraculous recovery.

Written in a young, alternative voice that weaves powerful prose with original poetry, "Dazed and Fatigued in the Toxic 21st Century" reveals a remarkable story of determination and personal insight, that sheds new light on what it means to grow up and live in today's toxic age. Source: Book Description, Amazon. Harland, K. A will of his own: Reflections on parenting a child with autism. A Will Of His Own should be enjoyed by other parents whose child has taken them into uncharted territory, as well as by readers who want to imagine what that journey entails.

Source: Excerpted from publisher book description, WoodbineHouse. Hockenberry, J. Moving violations: War zones, wheelchairs, and declarations of independence. New York: Hyperion. 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 Source: Center on Human Policy, Syracuse University. Secret Girl is a memoir about a well-to-do Baltimore family that for decades guarded a secret they felt too ashamed to reveal, much less discuss among themselves.

Anne has never been home to visit, and Jacobs has never seen her. Despite his participation in several forms of treatment, Jezer did not achieve fluency. His memoir tells of his experiences with dysfluency but also of his successes and satisfactions in professional and personal life Source: Ray D. Johnson, H. Too late to die young: Nearly true tales from a life. New York: Picador. With a voice as disarmingly bold, funny, and unsentimental as its author, a thoroughly unconventional memoir that shatters the myth of the tragic disabled life.

Harriet McBryde Johnson isn't sure, but she thinks one of her earliest memories was learning that she will die. The message came from a maudlin TV commercial for the Muscular Dystrophy Association that featured a boy who looked a lot like her. Then as now, Johnson tended to draw her own conclusions. In secret, she carried the knowledge of her mortality with her and tried to sort out what it meant.

By the time she realized she wasn't a dying child, she was living a grown-up life, intensely engaged with people, politics, work, struggle, and community. Due to a congenital neuromuscular disease, Johnson has never been able to walk, dress, or bathe without assistance. With help, however, she manages to take on the world. From the streets of Havana, where she covers an international disability rights conference, to the floor of the Democratic National Convention in Chicago, to an auditorium at Princeton, where she defends her right to live against philosopher Peter Singer, she lives a life on her own terms.

And along the way, she defies and debunks every popular assumption about disability Source: Excerpted from Book Description, Amazon,com. Johnson, R. Lost in a desert world: The autobiography of Roland Johnson.

Exploring Disability Identity and Disability Rights through Narratives

Wallace, CA: Massey-Reyner. Forty or fifty years ago, when a child was born with a developmental disability - mental retardation, in Roland Johnson's case - the doctor would invariably counsel the parents to put their son or daughter away and forget about them. Roland Johnson's mother and father did not take this advice.

But in the s in Philadelphia they had no one to help them - no counselors, no psychologists, no therapists, no teachers. And when the problems that Roland's disability presented began to overwhelm them, they had no choice but to resign themselves to that original advice. Roland Johnson spent half his childhood at Pennhurst State School outside Philadelphia, where he saw fellow residents abused and where he himself was abused.

But somehow he was able to keep his spirit alive. When he won his freedom as a young adult, he spent several years putting his life together. Then, as president of Speaking for Ourselves, he became an internationally known speaker and leader in the self-advocacy movement Source: Excerpted from Book Description, Amazon.

Karasik, P. New York: Washington Square. In this remarkable book, the Karasiks present a sibling's viewpoint of growing up with autism. Alternating between Judy's memoir and Paul's comics, they chronicle the life of their brother, David, from the s to today. The authors recount the heartbreaks and joys of growing up with an autistic sibling and offer insights into the treatment of the condition at a time, when the medical and educational professions knew little about it and blamed parents namely, "refrigerator moms". Events such as David's recitations of whole TV shows and his slapping his head as a response to uncomfortable situations take on new meaning through the unique format.

Judy formerly worked as a book editor, and Paul is a professional cartoonist. Their book fills an important gap in the literature, complementing the parental view found in most autism narratives. This work is strongly recommended for all public libraries and academic libraries with collections on autism and disability studies, as well as for book groups that wish to include a graphic novel.

Given the focus on children with special needs, secondary school libraries should also consider it Source: Corey Seeman, Univ. Kaufman, B. Son-rise: the miracle continues Reprint ed. Tiburon, CA: H. The original Son-Rise described the family trauma of the author, his wife Samahria and their son Raun, who had been diagnosed as autistic, mentally retarded and untreatable.

Rather than relegating Raun to permanent institutionalization, the Kaufmans designed a program of their own, which provided intensive therapy on a rigorous schedule that changed all of their lives. Did Raun continue to progress? In this book, that question is answered not only by the parents and extended family but also by Raun himself, now a college student and a participant in the family's educational foundation, The Option Institute and Fellowship, based in Sheffield, Mass.

Testimonials from similarly afflicted families who practice the Kaufmans' techniques for treating the communications disorders of so-called "unreachable" children round out a heartwarming, inspiring chronicle that should offer hope to many Source: Publishers Weekly, Amazon. Recommended by Ron Taylor, Independent Filmmaker. Kaufman, S. Retarded isn't stupid, mom! Baltimore: Paul H. Nicole is 2 years old, and her family, after months of worrying, has just learned she has mental retardation.

In a fast-paced, engaging story, mother Sandra Kaufman frankly reveals the feelings of denial, guilt, frustration, and eventual acceptance that result in a determination to help her child live an independent life. This edition, revised on the 10th anniversary of the book's original publication, adds a "progress report" that updates readers on Nicole's adult years and reflects on the revolutionary changes in society's attitudes toward people with disabilities since Nicole's birth.

Retarded Isn't Stupid, Mom! Keith, L. Mustn't grumble: Writings by disabled women. London: The Women's Press. This book 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. New York: The New Press. Disabled women face even greater obstacles than do women generally, and physically challenged lesbians and women of color deal with yet another set of problems. This anthology of prose, poetry, fiction, and personal memoirs by 36 disabled British women provides an interesting view of their life experiences.

Full of anger, pain, rage, hope, warmth, humor, and politics, their work shows readers daily life with its struggles, failures, and triumphs Source: Barbara M. Bibel, Oakland P. Kingsley, J, and Levitz, M. Count us in: Growing up with Down syndrome. San Diego: Harvest Books. Kingsley and Levitz write about education, employment, ambitions, families, sex and marriage, and their disability -- Down syndrome. At Jason's birth, the obstetrician said that he'd never learn anything and should be institutionalized. Fortunately, the Kingsleys ignored this advice, and their son has since attended school, written poetry, registered to vote, and memorized scripts for appearances on "Sesame Street" and "The Fall Guy.

Kisor, H. What's that pig outdoors? New York: Penguin Books. Kisor, book editor of the Chicago Sun-Times , lost his hearing after a bout with meningitis at age three and has since relied on spoken language and lip reading. Klein, S. Reflections from a different journey: What adults with disabilities want all parents to know. New York: McGraw-Hill. Most parents of children with disabilities lack personal experience with adults with disabilities. Hearing from people who have lived the disability experience can provide all parents with essential information about the possibilities for their children.

Reflections from a Different Journey includes forty inspiring and realistic essays written by successful adult role models who share what it is like to have grown up with a disability Source: DisabilitiesBooks. Kupfer, F. Before and after Zachariah: A family story about a different kind of courage.

Chicago: Academy Chicago. An intimate chronicle of one family's life with a young, severely neurologically disabled child. The author describes and defends the decision to place Zachariah in an institution. A teacher of writing, Ms. Kupfer has publicly and bitterly criticized families who decide to keep their children with disabilities at home. Even those who condemn this attitude, as we do, will nevertheless find this important reading Source: SpecialNeeds. Kuusisto is a poet, a graduate of the Iowa Writer's Workshop, and a Fulbright scholar.

He is currently director of student services at Guiding Eyes for the Blind, a nationally renowned guide dog school in Yorktown Heights, New York. Kuusisto has been legally blind since birth owing to a condition known as retinopathy of prematurity. In his memoir, he writes about his parents' denial of his blindness and his struggles to read and learn in a public school. The author describes his long-standing reluctance to accept his disability because he did not want to feel dependent, recounting his attempts to "pass" as sighted throughout childhood and into adulthood.

The most hopeful passages of this compelling story occur near the end, when Kuusisto trains at Guiding Eyes for the Blind and receives his guide dog, Corky. Kuusisto's poetic prose is filled with perceptive reflections on the tribulations of blindness and common misconceptions about the blind Source: Ximena Chrisagis, Fordham Health Sciences Lib.

Lee, C. Faking it: A look into the mind of a creative learner. Portsmouth, NH: Heinemann. Faking It is Chris Lee's story of almost two decades of academic frustration, matched by remarkable persistence, resilience, and ingenuity. It is a moving account of how people with his problems can be helped to overcome them.

The story Chris tells of what happened to him when he wound up in the University of Georgia Learning Disabilities Adult Clinic, where he met Rosemary Jackson, is both a moving account of how people with his problems can be helped to overcome them and, at the same time, a powerful indictment of the system--and it is nationwide--that leaves people like Chris feeling incompetent and stupid Source: SpecialNeeds. While hitchhiking from Boston to Washington, D. Her memoir begins with her struggle to regain physical and emotional strength and to resume her life in the world. Long, M.

If your dreams are big enough, the facts don't count. Long's story is deceptively candid and truly intriguing. Clinically, Long has mild cerebral palsy and mental retardation arising from difficulties during his birth. Reading his life story in his words--getting inside his head in a sense--is an eye-opening experience.

His story is not terrifically unique or absurd, which is part of the book's charm: the "fact" of his disability did not stand in the way of his dreams, nor should the reader's "disabilities," whether physical, mental or emotional, prevent them from fulfilling their own dreams. The book is honest and forthright. Long's goal with the book is to pass along his sense of confidence and fortitude, and remind readers that no matter how insurmountable their problems may seem, nothing is impossible. Long eventually became the first person with a developmental disability to be appointed to a government office by a state governor.

Lubchenco, L. 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. Josephson does not write about disability. Mairs, N. Waist-high in the world: A life among the disabled. Boston: Beacon Press. Mairs, a brilliant essayist and poet who has authored six previous books, reflects upon her experiences as a woman with multiple sclerosis.

She discusses such topics as adjusting to change, reconciling body image, experiencing sexuality, 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 Source: Center on Human Policy, Syracuse University. Marsh, J. From the heart: On being the mother of a child with special needs. In From the Heart: On Being the Mother of a Child with a Disability, nine mothers explore the intense, sometimes painful, emotional terrain of raising children with special needs in eye-opening narratives developed from their parent support group meetings.

The children who shape these women's lives have disabilities that include autism, Down syndrome, Tourette syndrome, and ADD. From the Heart is organized around several themes: relationships with professionals; family life and school issues; and issues about the "self" and closest friends and family. Their experiences resonate with the common struggles of healing; being heard and understood; coping with life; and dealing with greater emotional intensity than most parents do. These mothers affirm the experience of other parents like themselves.

From the Heart speaks to anyone who may know little about raising a child with special needs -- until they have one and must then forge a strong family unit nonetheless Source: Excerpted from Midwest Book Review, Amazon. The author's nephew Ian became autistic after his brain was damaged by a reaction to a routine vaccination for diphtheria, pertussis, and tetanus. The book is a graphic and scholarly account of autism but it also explores the essence of language learning, the child's attempt to cope with the objective world Source: Ray D.

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 Source: Center on Human Policy, Syracuse University.

Matola, T. Don't pull the plug: A lesson in life. Los Gatos, CA: Intrepid. Matola was a teacher, a hiker, a dancer. Then at age 61, he suffered a major stroke. Shut off from the world, from almost all communication, from his joys and his livelihood, he felt anger, frustration and despair.

When his doctor asked him if he wanted to have the plug pulled, he thought about the life he had, and the life he could look forward to. And he decided to live; to learn to live a new life — a fulfilling life, full of love and growth, and a determination to improve physically, mentally and spiritually Source: DisabilitiesBooks. Meyer, D. Uncommon fathers: Reflections on raising a child with a disability. Nineteen fathers of children with disabilities write about the loss they felt when their child was born and regaining the pride in their children. They talk about their own self-awareness as well as how other men and members of the community response to their children Source: Center for Disabilities Studies, University of Delaware.

Miller, N. Baltimore, MD: Paul H. Written in both first person accounts and from professional perspectives, this book examines the emotional, social, and functional impact of having a child with special needs Source: Center for Disabilities Studies, University of Delaware. Shares the story of Barbara Moise, born with developmental special needs, and the trials that led to Barbara's growing independence.

Includes overview of the resources available for persons with developmental disabilities and recommendations on important aspects of programs and services Source: EdGateway. Moise, L. Barbara and Fred, grownups now. This is a definitive book for parents and social workers in the field of developmental disabilities.

This book explores the issues and achievements of a mature couple tracing their growth from birth through significant and intimate relationships. There is not a hint of sentimentality here, just common sense, a bit of humor, political and social awareness, and an unflinching look at the life and times of an American family. Contains a good list of resources. Mont, D. A different kind of boy: A father's memoir about raising a gifted child with autism. London: Jessica Kingsley.

A little nine-year old boy looks down at the gymnasium floor. The room is filled with children who like and respect him, but he has no real friends. He can barely name anyone in his class, and has trouble with the simplest things - recognizing people, pretending, and knowing when people are happy or angry or sad. Much of his life has been filled with anxiety. And yet he was only one of seven fourth graders in the United States to ace the National Math Olympiad. In fifth grade he finished second in a national math talent search.

That boy is autistic. He is also loving, brilliant and resilient. In this book, his father writes about the joys, fears, frustration, exhilaration, and exhaustion involved in raising his son. He writes about the impact on his family, the travails of navigating the educational system, and the lessons he has learned about life, what it means to connect with other people, and how one builds a life that suits oneself.

And, oh, yes, math. Lots about math Source: Adapted from Jessica Kingsley book description, jkp. Mukhopadhyay, T. 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 has autism 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. 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.

Murphy, R. The body silent: An anthropologist embarks on the most challenging journey of his life: Into the world of the disabled.

Exploring Disability Identity and Disability Rights through Narratives - Human Rights - Law

London and New York: W. 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.

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 Source: Center on Human Policy, Syracuse University. Murray, J. And say what he is: The life of a special child.

The parents of a "special child" who has a severe developmental disability write of their experiences and their growing recognition of the boy's personality and meaning to their lives Source: Ray D. Nazeer, a successful British government policy adviser, was diagnosed early on with autism; he now seeks out the fate of four autistic classmates at his former New York City school.

He first encountered the "idiots" as one of them called the group more than 20 years ago, in an unnamed private school that has subsequently closed. In addition to interviewing the former pupils, all but one who committed suicide enjoying varying degrees of success in the greater world, Nazeer also visits the school's former director and special-needs teacher to learn how teaching autistic students has evolved. Considered a neurobiological disorder, autism largely confines a child to his or her own mental world. Randall, a courier in Chicago, demonstrates how early "parallel" play led to a satisfying love relationship developing empathy is difficult for the autistic.

Craig became an accomplished speech writer until his awkward social skills derailed him, while Elizabeth immersed herself in playing the piano before withdrawing completely. 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. 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.

Palmer, G. Adventures in the mainstream: Coming of age with Down syndrome. Bethesda: Woodbine House. Ned has Down syndrome; when high school ends for him, school is out forever. How will Ned negotiate the world without the structure of school? Will he find a rewarding job in something other than food service? Recommended by Deborah Safarik.

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 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 Source: Center on Human Policy, Syracuse University. Park, C. The siege: The first eight years of an autistic child. Boston: Little, Brown. At age two, in , Jessy Park was withdrawn, unable to walk or talk, yet oddly content within the invisible walls that surrounded her. The study of autism was still in its infancy. Exiting Nirvana: A daughter's life with autism Reprint ed.

Back Bay Books. Reprising her own now classic work The Siege, which covered the early years of her autistic daughters life, Clara Claiborne Park gives us a moving, eloquent portrait of Jessy as an autistic adult still struggling with language, with hypersensitivities and obsessions, and with the social interactions that most of us take for granted, but at the same time achieving more than her parents could have ever hoped for, becoming an accomplished artist, and growing into an active member of her family and community Source: Book Description, Amazon.

Recommended by Phil Ferguson, E. A very powerful and beautifully written story of Betty's son Jeff's first five years, and perhaps partly because Betty was a very early adopter of the principle of normalization, it does not feel out of date. I have given copies to scores of families and staff over the years, and I still use one story from the book in my regular staff training classes.

Price is James B. Duke Professor of English at Duke University. He came to disability as a mature and successful man and writer. He describes the experience in a very moving way and in plain, beautiful English. He also manages to find joy and meaning in the whole experience. Review and Recommendation by Cornelia Moisuk, Parent. Prince-Hughes, D.

Songs of the gorilla nation: My journey through autism. New York: Harmony Books. In this elegant and thought-provoking memoir, Dawn Prince-Hughes traces her personal growth from undiagnosed autism to the moment when, as a young woman, she entered the Seattle Zoo and immediately became fascinated with the gorillas.

Having suffered from a lifelong inability to relate to people in a meaningful way, Dawn was surprised to find herself irresistibly drawn to these great primates. By observing them and, later, working with them, she was finally able to emerge from her solitude and connect to living beings in a way she had never previously experienced. Songs of the Gorilla Nation is more than a story of autism, it is a paean to all that is important in life. Rabin, R. Six parts love: One family's battle with Lou Gehrig's disease. New York: Scribner.

This biography of the author's father follows him and his family as they face the trials of amyotrophic lateral sclerosis, a degenerative neurological disease. He was diagnosed with ALS in June of and died in October , conforming to the usual prognosis of death following diagnosis within 3 to 5 years Souce: Ray D. Reston, J. New York: Harmony. Reston writes about his third and youngest child, Hillary, who as a toddler was struck with an unknown medical condition that left her developmentally disabled and with a host of other medical problems. He makes it clear that the state of his daughter's health has severely impacted her family members' lives.

He makes no bones about the demands her condition has placed on them, just as he shows how much she means to them and to the many other people in her life. The book takes a strong stand in favor of cutting-edge medical research and putting the needs of the disabled in the planning and service forefront of any national heath-care plan. This work could have been a tale of suffering or of triumph over adversity as Hillary survived some close calls and continues to live a rich life, yet her father tells a much more nuanced and enjoyable story Source: Ted Westervelt, Library of Congress, Washington, DC, School Library Journal, Amazon.

Russell, M. Beyond ramps: Disability at the end of the social contract: A warning from an uppity crip. Monroe, ME: Common Courage. Marta Russell exposes the neoliberal drive to shrink social services with the Reinventing Government mantra. Schaefer, N. Does she know she's there?

Garden City, NY: Doubleday. From the moment the Schaefers were told their first-born Catherine would never walk, or talk, or even feed herself, they swore that to institutionalize her would be their last resort. The keeping of that vow was far from the story of tears and despair that some would assume. Now 37, Catherine Schaefer lives in her own home, with live-in support, plus friends-cum-tenants in the upstairs apartments. Still unable to move much, or to speak, Catherine's life has, nevertheless, been a rewarding success story.

This book is its chronicle, illustrated with black and white photographs Source: Book Description, Amazon. Nicola Schaefer has done it again! Her first book a best seller regaled us with the struggles of Catherine her daughter and Nicola enroute to making a life. Now, a decade after Catherine moved into her own home in Winnipeg, that story - told as only Nicola can. A 'must read' for every family even thinking about dealing with children approaching adulthood.

A powerful vision of hope, laced with reality and a liberal dash of fun. Source: Inclusion. Sellin, B. I don't want to be inside me anymore: Messages from an autistic mind A. Bell, Trans. Sellin is a year-old autistic German who has written a slender volume of epigrammatic musings using the technique of facilitated communication, a method whereby the autistic person types messages, one letter at a time, with one finger, using a "facilitator" to support the elbow or arm Source: Nina Wikstrom Aguilar, MLS, Melbourne, Fla.

Shaw, B. The ragged edge: The disability experience from the pages of the first fifteen years of the disability rag. Louisville, KY: Advocado. Some of the voices are reflective, some sad, some furious, but none will lull you to sleep. On the contrary, you'll feel ready to roll on out and transform the world. Sienkiewicz-Mercer, R. I raise my eyes to say yes. New York: Avon Books. 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 Source: Center on Human Policy, Syracuse University. When the book opens, Beth is spending her days riding the buses in the city where she lives, creating powerful connections with the drivers and passengers. Rachel, a driven professor and writer, is struggling to come to terms with her own ambitions and loneliness — as well as her distant feelings toward her one-of-a-kind sister.

Exploring Disability Identity & Disability Rights Through Narratives: Finding a Voice of Their Own

One day, Beth invites Rachel to join her for a year on the buses. Rachel says yes, and so begins a journey that changes both sisters' lives. Source: RachelSimon. Bonaventure University. Simons, R. After the tears: Parents talk about raising a child with a disability. Preface states, "In parenting a child with a disability, you face a major choice. You can believe that your child's condition is a deathblow to everything you've dreamed and worked toward until now. Or you can decide that you will continue to lead the life you'd planned - and incorporate your child into it.

Parents who choose the latter course find they do a tremendous amount of growing. Highly recommended for both parents and professionals. Speciner, J. Finally, dreams coming true. This is a book with a twofold purpose. It is a memoir about the life, challenges, and accomplishments of Jacquie, a woman with cerebral palsy. It is also a resource for people with disabilities who want to live independently Source: Lulu.

Taylor, R. All by self: A fathers story about a differently-abled child. The book was revised in with an additional story, fiction but full of insight, about Micah, his brother and mother taking a trip to a healing hot springs for a week. Review and Recommendation by Ron Taylor, Independent Filmmaker [for copies, contact author at lightoncom aol.

Thompson, K. Denver, CO: Spinsters Ink. 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. Turnbull, A. Parents speak out: Views from the other side of the two-way mirror. Columbus: C. Ann and Rud Turnbull. Parents of children with disabilities discuss their experience and lives from a number of perspectives.

Walker, L. A loss for words: The story of deafness in a family. New York: Harper and Row. Walker describes her experiences as the hearing child of deaf parents. While growing up, she often served as their ears and mouth, thereby living on the sometimes uneasy border between child and adult roles Source: Ray D. When she was diagnosed with autism at the age of 25, she wrote Nobody, Nowhere as an attempt to explore her experiences as a person with autistic symptoms.

In her sequel, Somebody, Somewhere, she continued to analyze how role-playing and ritualistic behavior helped her to cope with her environment, and how she was able to begin to replace these mechanisms with genuine interactions. This, her latest work, builds upon the last, addressing relationships and emotions. Williams describes her relationship with Ian, who became her best friend and eventually her husband Source: Center on Human Policy, Syracuse University.

Williams, D. Nobody, nowhere: The extraordinary autobiography of an autistic. 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. 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 Source: Center on Human Policy, Syracuse University. Willmuth, M. Women with disabilities: Found voices. Binghamton, NY: Haworth Press. This is a deeply personal and compelling discourse of the body, violence, sexuality, and disability. The authors offer a multicultural perspective, which speaks frankly about their experiences. They discuss the abuses they have endured and explain how they have struggled with the issue of being a woman with a body that does not conform to the image that society values Source: Center on Human Policy, Syracuse University.

Halfway through their first pregnancy, Greg and Tierney Fairchild hear the news all expectant parents dread: their baby isn't perfect. A routine ultrasound reveals that the fetus Tierney carries has a major heart defect. Making matters worse, the nature of the defect leads doctors to suspect it might be a symptom of Down syndrome. With those events as its starting point, Choosing Naia examines the exploding world of prenatal information--and the emotional maelstrom that ensues from an unwanted test result--through the prism of the Fairchild family's experiences.

Rapid advances in prenatal testing are enabling doctors to diagnose with great certainty a wide assortment of problems inside the womb. But that's where certainty ends. As they struggle with grief and confusion, would-be parents have only days or weeks to make choices--abortion, adoption, or continuing the pregnancy and keeping the child--whose reverberations are bound to alter the course of many lives.

In the Fairchilds' case, those choices are further complicated by race. Having married across racial lines, Greg and Tierney can imagine the discrimination felt by the disabled. Ultimately, that understanding informs their decision about whether and how to parent a disabled child. Once the choice is made, they face a difficult delivery, where Tierney's vigilance literally saves her baby's life, and high-risk open-heart surgery before the baby they name Naia can celebrate her first birthday.

After clearing those hurdles, the Fairchilds face new barriers they must tear down on behalf of their beloved child for all the days of their lives Source: Excerpted from Book Description, Amazon. Basford, C. We dance together: A painted essay about my education with Katie. Seaman, OH: Author. Painted and narrated by the author, We Dance Together features ten richly, evocative images, each revealing a lesson about self and society. Baskin, A. More than a mom: Living a full and balanced life when your child has special needs.

More than a Mom explores how women can lead rich, fulfilling personal lives while parenting a child with special needs. She contracted polio while pregnant with her daughter and is paralyzed from the neck down. Deserted by her husband and on welfare, Paige relies on Peacie, her black daytime caregiver, and on her daughter, Diana, now 13, for help at night. The teen is devoted to her beautiful, talented mother, yet at times is resentful that her mother's needs must come before her own. When their social worker learns that the money that would have provided for a nighttime caregiver has been used for other expenses, she demands that the situation be remedied.

Diana writes to Elvis, enclosing a song her mother had written long ago, he responds with a visit to Paige, and suddenly their life is made infinitely easier. Full of humor, devoid of self-pity, with lively characters that rise above their circumstances, this is the story of an adolescent accepting adult responsibilities, encountering the temptations of boys and booze, and experiencing the tensions between race and class in the s Source: Molly Connally, Chantilly Regional Library, Fairfax County, VA, School Library Journal, Amazon. Facilitated communication can open a world of communication to autistic children with other communicatively impaired individuals.

This book tells about several personal experiences with facilitated communication, and about the controversy surrounding this method Source: Adapted from Ray D. Blatt, B. Christmas in purgatory: A photographic essay on mental retardation. 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 s Source: Center on Human Policy, Syracuse University. Freak show: Presenting human oddities for amusement and profit. Chicago: University of Chicago. 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 Source: Center on Human Policy, Syracuse University.

Braddock, D. Disability at the dawn of the 21st Century and the state of the states. This fifth edition is the most extensive edition of The State of the States volumes. Part I explores the historical basis of disability services and includes a cross-disability empirical study of public financial support for disability. 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.

Campbell, J. 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 s to mid s. 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 Source: Center on Human Policy, Syracuse University. Charlton, J. Nothing about us without us: Disability oppression and empowerment.

Berkeley: University of California. 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 Source: Center on Human Policy, Syracuse University. Getting Life gets into the mind of the primary character in a way that draws you into her world so completely you don't want to let her go.

As the novel begins the protagonist, Emily, is a non-verbal, nursing home resident who has sat like a lump on a borrowed wheelchair for most of the past seventeen years. But Emily is not a lump; she is a thinking, feeling human being who has never had the opportunity to show her stuff. This is a triumphant story that touches on the lives of staff members of an independent living center and includes an ADAPT-like group for emphasis Source: Steven E.

The state boys rebellion. About the boys deposited at Fernald, a state institution in Massachusetts. Excellent read. Tragic story. Looks at how a system skews peoples lives and then responds or doesn't. I'm pleased to say that Commissioner Morrissey took matters into his own hands before Fred Boysce died and responded to Fred at least in part, telling Fred in writing that Fred was not a "moron.

The history of eugenics is in this book as well. It's a great read. I couldn't put it down. Davis, L. New York: New York University. 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. That identity is not fixed but malleable. Dougan, T. We have been there: A guidebook for parents of people with mental retardation.

Over 50 first person accounts of what family and community life is like with a child or adult family member with a cognitive disability. Topics examined include family holidays, support services, schools, advocacy, siblings, emotional responses and creating a community of support. Many of these vignettes are filled with raw emotion, both of tenderness and anger Source: Center for Disabilities Studies, University of Delaware.

The father a doctor asks his nurse to take the baby to an asylum but the nurse instead raises the child herself. The mother of the baby never is told. It also shows how a family is torn apart by an unknown secret. Review and recommendation by Deborah Safarik. Evans, S. Forgotten crimes: The holocaust and people with disabilities. Chicago: Ivan R. Dee Press. A stark look at the policies and actions towards people with disabilities of the Third Reich during the s. This sometimes unremembered step toward the larger holocaust is documented in this readable, relatively short book Source: Center for Disability Studies, University of Delaware.

Ferguson, P. Abandoned to their fate: Social policy and practice toward severely retarded people in America, Philadelphia: Temple University. A historical study of social policy and practice toward people labeled "idiots" or "severely retarded. Goode, D. A world without words: The social construction of children born deaf and blind. During the Rubella Syndrome epidemic of the s, many children were born deaf, blind, and mentally disabled.

David Goode has devoted his life and career to understanding such people's world, a world without words, but not, the author confirms, one without communication. This book is the result of his studies of two children with congenital deaf-blindness and mental retardation. Goode spent countless hours observing, teaching, and playing with Christina, who had been institutionalized since age six, and Bianca, who remained in the care of her parents. A World Without Words presents moving and convincing evidence that human beings both with and without formal language can understand and communicate with each other in many ways Source: Adapted from Temple publisher book description, Temple.

Greenberg, J. In this sign: The highly acclaimed novel of a family whose love and courage enable them to survive in the silent world of the deaf. New York: Henry Holt. Fiction Abel and Janice Ryder begin their married life together with all the hopes and dreams of a young couple deeply in love. But before long they realize that their deafness stands as an immense barrier between them and a society that seems to work only for those who can hear. Inexperienced, ignorant, and bewildered, they leave the harsh environment of a school for the handicapped and enter the insensitive world of the hearing.

Through years of debt and misunderstanding, hard and degrading work, the raising of a hearing daughter, common tragedies and joys, they learn that the remarkable tool of sign language enables them to survive and, indeed, to forge a love too powerful to be broken by the painful, extraordinary world into which they were born.

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

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 Source: Center on Human Policy, Syracuse University. Haddon, M. The curious incident of the dog in the night-time.

New York: Doubleday. Christopher Boone, the autistic year-old narrator of this revelatory novel, relaxes by groaning and doing math problems in his head, eats red-but not yellow or brown-foods and screams when he is touched. Strange as he may seem, other people are far more of a conundrum to him, for he lacks the intuitive "theory of mind" by which most of us sense what's going on in other people's heads.

When his neighbor's poodle is killed and Christopher is falsely accused of the crime, he decides that he will take a page from Sherlock Holmes one of his favorite characters and track down the killer. Hershey, L. Poems and tapes: On the lawn, In the way, Dreams of a different woman. Denver, CO: Author. Books of Poetry and Hershey, L. The prostitutes of Nairobi, You get proud by practicing.

Johnson, M. 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. Linneman, D. 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. 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 Source: Center on Human Policy, Syracuse University.

Linton, S. Claiming disability: Knowledge and identity. In this book, Simi Linton studies disability in relation to identity. 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 Source: Center on Human Policy, Syracuse University.

Longmore, P. Why I burned my book and other essays on disability.