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Recommended Memoirs About the Disability Experience

Click on the first letter of the book title you want to read about:

A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

Other Books about the disability experience
Not memoirs  •  For children

A

A Difference in the Family (1981). Helen Firestone. New York: Basic Books. In this wise, compassionate account, Helen Featherstone, educator and mother of a severely disabled child, traces the long, often heartbreaking road toward complete acceptance of disability. Drawing on interviews with parents and professionals, published accounts, and her own personal experience, she discusses how parents and siblings cope with their feelings of fear, anger, guilt, and loneliness (Source: Publisher book description, Amazon.com). Recommended by Jamie Ruppmann, Associate Director, The Advocacy Institute; Sue Swenson, Executive Director; The Arc of the United States; and Lynne Tamor, Parent and Advocacy Coordinator, Association for Children's Mental Health.

A different kind of boy: A father's memoir about raising a gifted child with autism. (2001) D. Mont. 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.com). Recommended by Sue Swenson, Executive Director, The Arc of the United States.

A loss for words: The story of deafness in a family.(1986) L. A. Walker. 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. Kent, http://www.mnsu.edu/comdis/kuster2/therapy/firstperson/consumerbooks.html).

A whole new life (Reprinted 2003) R. Price. New York: Scribner. 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.

Adventures in the mainstream: Coming of age with Down syndrome. (2005) Greg Palmer. Bethesda: Woodbine House. Like many parents, Greg Palmer worries about his son’s future. But his son Ned’s last year of high school raises concerns and anxieties for him that most parents don’t experience. Ned has Down syndrome; when high school ends for him, school is out forever. The questions loom: What’s next? How will Ned negotiate the world without the structure of school? Will he find a rewarding job in something other than food service? To help him sort out these questions Palmer, an award-winning writer and producer of PBS documentaries, keeps a journal that’s the basis of this thoughtful and entertaining book (Source: Excerpted from publisher book description, WoodbineHouse.com). Recommended by Deborah Safarik.

A will of his own: Reflections on parenting a child with autism. (2002) K. Harland. Bethesda, MD: Woodbine House. Reflecting on her life before and after motherhood, Harland finds that despite the pain and chaos of Will’s autism, her life’s horizon has stretched and grown. Her son’s disorder has pulled her in directions she never meant to go, but wouldn’t reverse for anything. 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.com). Recommended by Deanna Pedicone, Project Coordinator, Center for Disabilities Studies, University of Delaware.

Adventures in the Mainstream: Coming of Age with Down Syndrome. (2005). Greg Palmer. Like many parents, Greg Palmer worries about his son’s future. But his son Ned’s last year of high school raises concerns and anxieties for him that most parents don’t experience. Ned has Down syndrome; when high school ends for him, school is out forever. The questions loom: What’s next? How will Ned negotiate the world without the structure of school? Will he find a rewarding job in something other than food service? To help him sort out these questions and document his son’s transition from high school to work, Palmer, an award-winning writer and producer of PBS documentaries, keeps a journal that’s the basis of this thoughtful and entertaining book. (Amazon.com)

After the Tears: Parents Talk About Raising a Child With a Disability. (1987). Robin Simons. San Diego: Harvest Books. 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." Well-written book with sections on guilt and anger, adjustments, isolation, marital stress, relatives, siblings, other family needs, strangers, professionals, the school system, meeting one's own needs, chronic sorrow, communication, and personal growth. Highly recommended for both parents and professionals. (Source: The Arc Minnesota, http://www.arcminnesota.com/res-parents.htm).

Aidan's Way: The Story of a Boy's Life and a Father's Journey. (2004). Naperville, IL: Sourcebooks. George T. Crane An Asian studies professor at Williams College, Crane mines his academic field to tell the story of his profoundly disabled son's life, unpacking a grab-bag of Asian philosophy and its relationship to his son's humanity and worth. Crane's thesis that "disabled people are not marginal to the human experience; they are central to it, for without them there could be no definition of ability," while not novel, is a stimulating addition to the public debate over the rights of the disabled. Crane's son, Aidan, has had seizures since he was 10 days old, and at age seven he "still could not walk or talk or see. His abilities were closer to those of a three-month-old infant." The author recounts the many years of doctor visits and the frustrations and triumphs he and his wife experience as they attempt to give their child meaningful care. Publishers Weekly. Sam Crane was unprepared to be the father of Aidan, a boy who would never walk, talk or see. Aidan’s Way is an endlessly inspiring account of parental love and devotion, of the lessons of ancient eastern philosophy and of what it means, ultimately, to be human (Source: SpecialNeeds.com). Recommended by Susan Marks, Associate Professor, Northern Arizona University.

All by Self. (1991). Ron Taylor. Boulder, CO: Light on Books & Videotapes. Describes the author’s first six years of adventures with his son Micah who has CP and significant challenges. It is beautifully illustrated in pencil/paper and some color drawings by both Micah and his brother Jonah. The book was revised in 1995 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. The first chapter is illustrated by Jay Jacoby, and the second chapter ("Bonsai: The Art of Swimming through Life's Challenges") is illustrated by Micah and his brother Jonah. Review and Recommendation by Ron Taylor, Independent Filmmaker [for copies, contact author at lightoncom@aol.com].

As We Grew Up with Barbara . (1980). Lotte Moise. Fort Bragg, CA: Cypress House. A common sense book and personal account by a mother of her daughter's growth and their adult relationship. (Cypress House) 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.net). Recommended by Ronnie Cohn, Independent Evaluator; and Patty McGill Smith, Parent, Grandmother, Advocate, President, The Arc of Nebraska.

Autobiography of a Face. (1994). Lucy Grealy. 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 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. (Source: Center on Human Policy, Syracuse University).

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B

Barbara and Fred, Grownups Now. (1998). Lotte Moise. Fort Bragg, CA: Cypress House. Living fully with a disability is the theme of this mother's book about her daughter growing up. It is the sequel to As We Grew Up With Barbara. 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. The author feels that "attitudes are the real disability” (Source: SpecialNeeds.com). Contains a good list of resources. Recommended by Patty McGill Smith, Parent, Grandmother, Advocate, President, The Arc of Nebraska.

Before and after Zachariah: A family story about a different kind of courage. (1998) F. Kupfer. 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.com). Recommended by Lynne Tamor, Parent and Advocacy Coordinator, Association for Children's Mental Health.

Beyond Ramps: Disability at the End of the Social Contract: A Warning from an Uppity Crip. (1998). Marta Russell. Monroe, ME: Courage Press. An award-winning producer and photographer whose investigative reporting earned her a Golden Mike Award for best documentary from Radio & Television News Association of Southern California in 1994, Russell delivers a vividly written, lucid analysis of the social safety net and ts failure to cover people with disabilities and their families — Marcus Raskin, co-founder, Institute for Policy Studies, Professor of Public Policy, George Washington University. Marta Russell exposes the neoliberal drive to shrink social services with the Reinventing Government mantra. "We are dangerously close to a Jerry Lewis democracy where middlemen beggars and corporate CEOs getting huge paychecks may replace entitlements with charity," reveals Russell in her devastating analysis of the "reform" of the social safety net. (Source: Book Description, Amazon.com). Recommended by Maureen Keyes, Associate Professor, University of Wisconsin – Milwaukee.

Beyond the Silence: My Life, the World and Autism. (2000). Mukhopadhyay, T. R. 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. The initial two sections present Tito’s autobiographical narration while the remaining two sections present a collection of his selected poems. Source: Center on Human Policy, Syracuse University).  

Body, remember.  (1997). Kenny Fries. 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. Source: Center on Human Policy, Syracuse University).

The Body Silent: An Anthropologist Embarks on the Most Challenging Journey of his Life: Into the World of the Disabled. (1987) Robert Murphy. 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. 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). Recommended by Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

The Broken Cord. (1990). Michael Dorris.  New York: Harper Perennial. When Michael Dorris, 26, single, working on his doctorate, and part Indian himself, applied to adopt an Indian child, his request was speedily granted. He knew that his new three-year-old son, Adam, was badly developmentally disabled; but he believed in the power of nurture and love. This is the heartrending story, full of compassion and rage, of how his son grew up mentally retarded, a victim of Fetal Alcohol Syndrome whom no amount of love could make whole. The volume includes a short account of his own life by the 20-year-old Adam, and a foreword by Dorris' wife, the writer Louise Erdrich. The Broken Cord won a National Book Critics Circle Award in 1989. (Source: Amazon.com).

Bus girl: Poems by Gretchen Josephson. (1997) L. O. Lubchenco & A. C. Crocker. 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. Instead, she simply creates poetry about her life (Source: Center on Human Policy, Syracuse University). Recommended by Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

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C

Changed by a Child. (1997). Barbara Gill.  New York: Doubleday. This is a book of meditations for parents of children with disabilities. Many parents have said that they use this as a centerpiece in discussions, and give copies to new parents they meet. Raising a child with a disability can often be more isolating and frustrating than any parent ever imagines. Finally, here is a book that honestly describes the inner needs and range of issues parents with disabled children face. Changed by a Child invites parents to take a moment for themselves. Each of the brief readings offers comfort and hope as they capture the unique challenges and joys of raising a disabled child. (Source: RandomHouse.com). Recommended by Sue Swenson, Executive Director, The Arc of the United States; and Susan Yuan, Associate Director, Center on Disability and Community Inclusion, University of Vermont.

A Child Called Noah. (1989). Josh Greenfeld. (Reissued ed.). New York: Pocket Books. The joy and hope with which Greenfeld recorded Noah's birth in his journal were not to last. By the age of two and a half, Noah had stopped talking, had difficulty performing the simplest tasks, and could not communicate with his parents. The doctors consulted by the Greenfelds were as baffled as Noah's beleaguered parents. Vacillating between hope and despair, and increasingly aware of the impact caring for a child like Noah would have on their lives, the anguished Greenfeld family journeyed from New York to Connecticut to California in search of help. An honest, harrowing, and profoundly human story. (Wyoming Parent Information Center)

The Child Who Never Grew. (1992). Pearl S. Buck. Bethesda, MD: Woodbine House. (Original work published 1950). "...Buck turned away from fiction for this heartfelt 1950 volume about her mentally retarded daughter. The volume broke the taboo against raising the subject [of mental retardation] in public and laid the groundwork for the literature on the disabled that followed." -Library Journal This edition brings back into print a classic in disability literature. Written by a Nobel and Pulitzer prize- winning author, this personal account broke a national taboo when it was originally published in 1950. Buck’s inspiring account of her struggle to help and understand her daughter with intellectual disabilities was perhaps the first disclosure of its kind by a public figure. Today, much of the emotional experience Buck so eloquently describes still rings true. New material written especially for this edition amplifies her story and gives the book an important historical perspective (Source: WoodbineHouse.com). Recommended by Diana Lawrence-Brown, Chair, Inclusive Graduate Programs, St. Bonaventure University; Deborah Safarik; and Sue Swenson, Executive Director, The Arc of the United States.

Choosing Naia: A Family’s Journey. (2003). Mitchell Zuckoff. Boston: Beacon Press. For a 1998 Boston Globe article, reporter Zuckoff interviewed Greg and Tierney Fairchild, a happily married, interracial professional couple who went for the usual prenatal screenings and came away knowing that the fetus carried a major heart defect that could signal Down syndrome. Up against Connecticut's 24-week deadline for elective abortions, the couple struggles with complicated ethical and practical concerns, since the newborn would have to undergo major open-heart surgery and face lifelong disabilities. In the end, they decide this will simply be one more challenge they'll face together. Cahners Bus. Inf. 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. The nature of the defect leads doctors to suspect it might be a symptom of Down syndrome. 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.com). Recommended by Deb Einhorn, Director, Family Matters, Family Support Program, Parent Training and Information Center and ARC Community Support System.

Count Us In: Growing Up with Down Syndrome. (1994). Jason Kingsley & Mitchell Levitz. 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." Hearing about Down syndrome directly from these young men has a good deal more impact than reading any guide from a professional or even a parent. Their comments are eye-opening and heartening. (Booklist). Recommended by Diana Lawrence-Brown, Chair, Inclusive Graduate Programs, St. Bonaventure University; Deborah Safarik, Phil Smith, Assistant Professor, Special Education, Eastern Michigan University; and Liz Weintraub, Quality Enhancement Specialist, Council on Quality in Leadership.

Cushla and Her Books. (1980) Dorothy Butler Cushla and her books is a heartwarming story of two parents who are devoted to raising their daughter with significant disabilities. Even though these disabilities stunted her physical and cognitive development, her parents were determined to give Cushla the best quality of life. Cushla's mother introduced books to her at a young age and read to her on a continual basis. As Cushla aged, the constant exposure to books increased her cognitive development began to recognize words and pictures, and simply developed a love for books. However, several aspects of the story were presented in a textbook manner that made the reading often tedious and disengaging. Overall, the book has a strong message and is very informative (Amazon)

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D

Dazed and Fatigued in the Toxic 21st Century (1998). Mark Llewellyn Hall. Los Angeles:Consafos.....an astonishing first person experience in recovering from chronic fatigue syndrome. Written in an alternative voice that is raw and at times wildly spontaneous, the story weaves poetry with ironic insights and commentaries. ... Amazon.com

A Difference in the Family. (1981). Helen Featherstone. In this wise, compassionate account, Helen Featherstone, educator and mother of a severely disabled child, traces the long, often heartbreaking road toward complete acceptance of disability. Drawing on interviews with parents and professionals, published accounts, and her own personal experience, she discusses how parents and siblings cope with their feelings of fear, anger, guilt, and loneliness. (Wyoming Parent Information Center)

Differences in Common Straight Talk on Mental Retardation, Down Syndrome, and Life. (1991) Marilyn Trainer. This collection of engaging essays goes a long way toward improving understanding of the effects and potential of Down Syndrome. Trainer, mother of a young adult with Down Syndrome and activist for the rights of the disabled, writes with perception and eloquence on the many issues which families of children with Down Syndrome must face: public attitudes, family adjustment, education, mainstreaming, adolescence, and independence. Particularly compelling is her report of the employment situation facing mentally retarded adults. Trainer makes a strong case for the worthwhile accomplishments which can be realized through the combination of a supportive family, funds for training, and a willing community. (Library Journal)

A Different Kind of Boy: A Father's Memoir About Raising a Gifted Child with Autism. (2001). Dan Mont. 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. (Jessica Kingsley, Publisher)

The Diving Bell and the Butterfly. (1997) Bauby, J. New York: Alfred A. Knopf. On December 8 1995, Elle magazine editor-in-chief Bauby suffered a stroke and lapsed into a coma. He awoke 20 days later, aware of his surroundings but physically paralyzed with the exception of some movement in his head and left eye. Bauby had Locked-in-Syndrome, a rare condition caused by stroke damage to the brain stem. Eye movements and blinking a code representing letters of the alphabet became his sole means of communication. It is also how he dictated this warm, sad, and extraordinary memoir. Bauby's thoughts on the illness, the hospital, family, friends, career, and life before and after the stroke appear with considerable humor and humanity. Actor Rene Auberjonois's narration adds to the poignancy of the story. Sadly, Bauby died of his condition in 1997 (Source: Stephen L. Hupp, Univ. of Pittsburgh at Johnstown Lib., Library Journal, Amazon.com).

Does She Know She's There? (2000), Nicola Schaefer. Garden City, NY: Doubleday. With candor, poignancy and humor, Schaefer chronicles her steadfast determination not to institutionalize or stigmatize her daughter. Readers may be moved to tears and laughter as they share the tragedies and triumphs of these two unique women. Due to the challenges faced by Catherine, stories of even the most ordinary events in her life become extraordinary. This a celebration of the lives of some remarkable people; in that respect, it succeeds admirably." - Canadian Book Review Annual. The inspiring story of one family's determination to love, cherish, and keep their only daughter. 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. "Cath" emerges as an engaging personality in her own right, as terribly challenged as she is. 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.com). Recommended by Diana Lawrence-Brown, Chair, Inclusive Graduate Programs, St. Bonaventure University; and David Wetherow, CommunityWorks.

Don't Pull the Plug: A Lesson in Life. (2002). Thomas Matola and Roberta  Johnson. 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.com. Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University.
 
Don’t Worry, He Won’t Get Far on Foot. (1989). John Callahan. 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. (Source: Center on Human Policy, Syracuse University).

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Emergence Labeled Autistic (1996). Temple Grandin. Novato, CA: Arena Press. Grandin was diagnosed with autism at the age of three. An intelligent child with a thirst for knowledge, but unable to properly express herself or control her behavior, Temple struggled through grade school. Eventually moved from a 'normal' school to an educational program for autistic children, she began to suffer 'nerve attacks.' Now Temple tells the story of how she went from a fear-gripped child to a successful professional and a world leader in her field. A chronicle of perseverance and courage, EMERGENCE gives new hope and insight into the tragedy of autism and the vast potential of the human spirit. (Amazon) Recommended by Deb Einhorn, Director, Family Matters, Family Support Program, Parent Training and Information Center and ARC Community Support System.

Exile & Pride (1999). Eli Claire. Cambridge, MA: South End Press. Eli Clare, a poet with cerebral palsy, movingly describes her attempt to climb Mount Adams -- not, she points out, as a "supercrip," but just as an impaired person who loves to hike: a story about ableism rather than disability. Avoiding easy answers and journalistic sunshine, she recounts the story of the fight for disabled access. "I think of the words crip, queer, freak, redneck," Clare remarks. "None of these are easy words. They mark the jagged edge between self-hatred and pride, the chasm between how the dominant culture views marginalized peoples and how we view ourselves, the razor between finding home, finding our bodies, and living in exile, living on the metaphoric mountain." --Regina Marler. 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 (Source: Center on Human Policy, Syracuse University).

Exiting Nirvana: A Daughter's Life with Autism. (2001). Clara Claiborne Park. 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 adultstill 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.com). Recommended by Phil Ferguson, E. Desmond Lee Professor in Education of Children with Disabilities, University of Missouri – St. Louis.

Expecting Adam, A True Story of Birth, Rebirth, and Everyday Magic. (Reissue 2000). Martha Beck. New York: Berkley. An autobiographical tale of an academically oriented Harvard couple who conceive a baby with Down's syndrome and decide to carry him to term. Despite everything Martha Beck and her husband John know about themselves and their belief system, when Martha gets accidentally pregnant and the fetus is discovered to have Down's syndrome, the Becks find they cannot even consider abortion. The presence of the fetus that they each, privately, believe is a familiar being named Adam is too strong. As Martha's terribly difficult pregnancy progresses, odd coincidences and paranormal experiences begin to occur for both Martha and John, though for months they don't share them with each other. Martha's pregnancy and Adam become the catalyst for tremendous life changes for the Becks.

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Faking It:  A look Into the Mind of a Creative Learner. (1992). C. Lee & R. Jackson. 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.com). Recommended by Maureen Keyes, Associate Professor, University of Wisconsin – Milwaukee.

Fighting for Darla: Challenges for Family Care and Professional Responsibility : The Case Study of a Pregnant Adolescent With Autism (1994).New York: Teachers College Press. Ellen Brantlinger, Susan Klein and Samuel Guskin. The authors say, “Often the professional literature implies that a consensus exists regarding meeting needs and delivering services to people with disabilities. On the contrary, our research has led us to the strong conviction that tentativeness, anxiety, and misgivings often surround the actions of those providing care and well as those who receive care. Darla reminds us that the real world is complicated and never easy; she forces us to struggle with our own sense of helplessness and despair when the real world does not live up to our expectations. Although she has not language that we can understand, Darla teaches us...."(Source: Excerpted from Ontario Adult Autism Research and Support Network Book Review, www.ont-autism.uoguelph.ca/). Recommended by Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

Finally, Dreams Coming True. (2006). Jacqueline Speciner. Lulu.com: Author. 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.

Fragile innocence: A father’s memoir of his daughter’s courageous journey. (2006) J. Reston. 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.com). Recommended by Karen Lee, Executive Director, SEEC.

From the Heart: On Being the Mother of a Child With Special Needs. (1995). Jayne Marsh. Bethesda, MD: Woodbine House. 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. (Source: Excerpted from Midwest Book Review, Amazon.com). Recommended by Lynne Tamor, Parent and Advocacy Coordinator, Association for Children's Mental Health.

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I Don't Want To Be Inside Me Anymore: Messages from an Autistic Mind. (1995). Birger Sellin. New York: Basic Books. Sellin is a 21-year-old autistic German who has written a slender volume of epigrammatic musings using the technique of facilitated communication (FC), 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., Library Journal, Amazon.com). Recommended by Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

I Had No Means to Shout. (1999). Charles Hale. Bloomington, IN: 1st Books. 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. 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.”  (Source: Center on Human Policy, Syracuse University). Recommended by Cornelia Moisuk, Parent.             
 
I Raise My Eyes to Say Yes. (1989). Ruth Sienkiewicz-Mercer. New York: Avon Books. A powerful account, written with the assistance of Steven Kaplan, of Sienkiewicz-Mercer’s 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. (Source: Center on Human Policy, Syracuse University). Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University; Linda Lengyel, Assistant Professor, Duquesne University; Cynthia Levine, , Shrieber Clinical Services Corporation; Ruby Moore, friend of Ruth’s for 28 years and Executive Director, Georgia Advocacy Office; Lori Noto, Professor, School of Education and Human Resources, University of Bridgeport; and David Wetherow, CommunityWorks.  

If Your Dreams Are Big Enough, The Facts Don't Count. (1990). Michael S. Long. Wallace, CA: Massey-Reyner. Long's story is deceptively candid and truly intriguing. Clinically, Long has mild cerebral palsy and intellectual disabilities 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," 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. (Source: Excerpted from Today’s Librarian, September 2000, Virgo Publishing, Inc., http://www.karlwilliams.com/if_your_dreams.htm).

Incurably Human. (2000). Micheline Mason. 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. (Source: Center on Human Policy, Syracuse University).

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Letters to Sam: A grandfather's lessons on love, loss, and the gifts of life. (2006) Daniel Gottlieb. New York: Sterling Publishing Co., Inc. In the tradition of such bestsellers as Tuesdays with Morrie, this is a powerful collection of love letters from a quadriplegic grandfather to his autistic grandson. Written by award-winning radio host and psychologist Daniel Gottlieb, it is sure to touch readers deeply. (Source: SpecialNeeds.com).
 
Life as We Know It:  A Father, Family, and an Exceptional Child. (1998).Michael Berube. 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.    

Like Colors to the Blind. (1996). Donna Williams. New York: Times Books. This is Donna Williams’ third book about her life as a person with autism. 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). Recommended by Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

Lost in a Desert World: The Autobiography of Roland Johnson. (1999). Roland Johnson and Karl Williams. 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 1950s 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. (Amazon) Recommended by Ruthie Marie Beckwith, Director, Tennessee Microboards Association; Donna Martinez, Co-Vice President, National Coalition on Self Determination; Phil Smith, Assistant Professor, Special Education, Eastern Michigan University; and Liz Weintraub, Quality Enhancement Specialist, Council on Quality in Leadership.

Lucy’s Story: Autism and Other Adventures. (1999). Lucy Blackman. 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.  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). 

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The Me in the Mirror. (1994). Connie Panzarino. 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. (Source: Center on Human Policy, Syracuse University).

Meditations from A Movable Chair: Essays (1998). Andre Dubus. New York: Vintage. ....the twenty-five pieces in this powerfully moving new collection [are] a continuation of Dubus's candid, intensely personal exploration into matters of morality, religion and creativity. ... Here is Dubus on the rape of his beloved sister, his first real job, a gay naval officer, Hemingway, the blessing of his first marriage, his dear friend Richard Yates, his own crippling, lost autumnal pleasures, ... the Catholic church and, of course, his faith." (The Council on Disability Rights) His second essay collection, Meditations from a Movable Chair, is about the people who have meant the most to him. The book conjures a cloud of witnesses--Dubus's father, his sister, Norman Mailer, Liv Ullmann, a gay military officer--so vividly that their gifts to Dubus become gifts to the reader, as well. Many of these people helped Dubus understand the holiness, even sacramentality, of everyday life, which he describes in explicitly Catholic terms. Meditations from a Movable Chair is a rare and wonderful thing--a book written out of love, whose richness of heart is expressed by an exacting and challenging mind (Source: Michael Joseph Gross, Amazon.com).

Movie Stars and Sensuous Scars, Essays on the Journey from Disability Shame to Disability Pride. (2003). Steven E. Brown. Lincoln, NE: iUniverse. Chronicles the author’s journey from disability shame to disability pride — and then some. Includes a too-brief biography of his friends, Ed Roberts and Ed’s mom, Zona (what a woman!); the story of how Kalamazoo, Michigan got America’s first curb cuts in 1945; a tale of first CIL to wrest control from a bad board; the best work we’ve seen on the reality of pain in his chapter “Hooked on Symptoms”; “The Truth about Telethons” and altogether more surprising and beautiful work than we can describe here. Just get it.” --Mouth Magazine. Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride is a combination of autobiographical stories about living with a disability, scholarly essays about disability rights and disability culture, and profiles of disability rights leaders, in the context of a world-wide disability rights movement by Steven E. Brown, Ph.D., Co-Founder, Institute on Disability Culture, and Resident Scholar, Center on Disability Studies at the University of Hawai'i, who is an internationally-renowned disability rights activist. Brown is a historian and award-winning poet, Brown's written five books about disability rights and culture and six books of poetry (Source: DisabilitiesBooks.com). Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University.

Moving Violations: War Zones, Wheelchairs, and Declarations of Independence. (1995). John Hockenberry. 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. (Source: Center on Human Policy, Syracuse University). Recommended by Maureen Keyes, Associate Professor, University of Wisconsin – Milwaukee.

My Body Politic. (2005), Simi Linton. Ann Arbor, MI: University of Michigan. In this volume, Linton recounts her personal odyssey, from flower child "walkie" in 1971 to disability-rights/human rights advocate in 2005. A car accident en route to a Vietnam War protest took the lives of Linton's husband and her best friend, and left Linton in a wheelchair. In the '70s, this meant almost a year in hospitals and rehab facilities before being released to cope with Manhattan before the Americans with Disabilities Act—no cut-throughs on street curbs, unusable public transportation, rarely accessible bathrooms in public buildings and inaccessible rooms in most schools and workplaces. Linton managed, as others have, but it wasn't until she went to the West Coast and discovered the growing disability rights community that she began to see her situation in a political light. Reed Business Information, a division of Reed Elsevier Inc. While hitchhiking from Boston to Washington, D.C., in 1971 to protest the war in Vietnam, Simi Linton was involved in a car accident that paralyzed her legs and took the lives of her young husband and her best friend. Her memoir begins with her struggle to regain physical and emotional strength and to resume her life in the world. Then Linton takes us on the road she traveled (with stops in Berkeley, Paris, Havana) and back to her home in Manhattan, as she learns what it means to be a disabled person in America (Source: Excerpted from University of Michigan Press description, http://www.press.umich.edu/).

My Left Foot. (1998) Christy Brown. London: Vintage. (Original work published 1954). My Left Foot tells of the childhood and adolescence of Christy Brown, the author. Though Brown is born with severe cerebral palsy, unable to communicate or control his movements, his mother believes that his mind is unaffected. Her confidence in Brown's growing abilities never falters as her son grows up and becomes increasingly aware of his physical disabilities. BookRags.

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Nobody, Nowhere: The Extraordinary Autobiography of an Autistic. (1992). Donna Williams. 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.” (Source: Center on Human Policy, Syracuse University). Recommended by Diana Lawrence-Brown, Chair, Inclusive Graduate Programs, St. Bonaventure University; and Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

Nobody’s Perfect: Living & Growing with Children Who Have Special Needs. Miller, N. (1994). Baltimore, MD: Paul H. Brookes Company. Four "moms" who have had a child with a disability talk about the feelings of loss, acceptance, support, set-backs, and rewards related to their children with special needs. 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.

Nothing About Us Without Us: Disability Oppression and Empowerment (1998). James Charlton. "Jim Charlton, in a deeply moving work, demolishes old myths about disabilities. He reveals in stunning oral histories, conducted in ten different countries, possibilities yet untapped." — Studs Terkel. A defining document in the literature of disability culture. Jim Charlton chronicles both the history and experience of exclusion so familiar to people with disabilities. But he does it all in a style and with sensitivity that connects the voices of a unique community to the universal narrative of human rights. This is oral history and political manifesto rich with wisdom and insight on every page." — John Hockenberry (author of Moving Violations)
 
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Out of silence. (1994) R. Martin. New York: Henry Holt & Co. 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. Kent, http://www.mnsu.edu/comdis/kuster2/therapy/firstperson/consumerbooks.html).
 
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Parents Speak Out: Growing with a Handicapped Child. (1979). Ann and Rud Turnbull. Columbus: C. E. Merrill. Parents of children with disabilities discuss their experience and lives from a number of perspectives. Recommended by Jamie Ruppmann, Associate Director, The Advocacy Institute.

Planet of the Blind: A Memoir. (1998). Stephen Kuusisto. A beautifully written account that graces the reader with painful insight and self-revelation." — Jo Holzer, CDR Executive Director "Born with only residual vision, Kuusisto was led by the insistence of his mother and the ignorance of the society around him to an elaborate and harrowing attempt to appear sighted. ...the story of a lifelong struggle that leads to acceptance." — John Longenbaugh

The Power of the powerless. (1998) C. DaVinc. New York: Doubleday. De Vinck writes about his brother Oliver, who lives a life of profound disability, and shows how much Oliver means to him and to all he comes in contact with. Oliver "lay in the same bed for 33 years, unable to see, walk, communicate or feed himself." The book jacket says the book "is a doorway into the deep lessons of life, love, and faith Christopher de Vinck learned from his brother Oliver. It poignantly affirms the immeasurable worth of every person." The book has introductory and closing remarks by Henri Nouwen, Sargent Shriver and Fred (Mr.) Rogers. Recommendation and review by David Coulter, M.D., Department of Neurology, Children's Hospital, Boston, Massachusetts.

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The Ragged Edge: The Disability Experience from the Pages of the First Fifteen Years of The Disability Rag (1994). Barrett Shaw (ed.) Louisville, KY: Avocado Press. Reading The Ragged Edge anthology is like sitting in on a vigorous, sometimes funny, and often irreverent roundtable discussion of the issues that most concern all humanity, disabled and nondisabled, whether they admit it or not. 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. (Source: Nancy Mairs, author of Plaintext, Carnal Acts, Ordinary Time and Waist High In the World, AvacadoPress.org). Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University.

Reflections from a Different Journey: What Adults with  Disabilities Want All Parents to Know. (2005). Stanley D. Klein and John D. Kemp (eds.) 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. Disabilities Books. Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University.

Rescuing Jeffrey (2000) R. Galli. Chapel Hill: Algonquin Books. In one terrible instant, on July 4, 1998, the lives of the Galli family changed forever. Their 17-year-old son dove into a pool and broke his neck when his head hit the bottom. So begins the account of the next 10 days in Jeffrey's life as told by his father. When the Gallis were informed that their son's fracture had resulted in quadriplegia, their world crumbled. As doctors, specialists, social workers, and clergy tried to explain the future that Jeffrey was facing, his parents started to consider another possibility. Perhaps life under those conditions was not the best choice for their son-maybe the best option for Jeffrey was death. This is an honest and heartrending account of a family facing a dire reality (Source: Excerpted from Carol DeAngelo, Kings Park Library, Burke, VA, School Library Journal).

Retarded Isn't Stupid, Mom! (Rev. 1999) Original1988. Sandra Kaufman. Baltimore: Paul H. Brookes. A moving, direct account of a mother's and daughter's struggle for mutual independence. Nicole's retardation is obviously a center issue, but the trials of growing up, making mistakes, learning how to function in a complex world, and forging an identity independent of one's family are processes every adolescent faces. —Marty Wyngaarden Krauss, Ph.D. Nicole is 2 years old, and her family, after months of worrying, has just learned she has intellectual disabilities. 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! remains a celebration of all that a child can grow to be (Source: BrookesPublishing.com). Recommended by Cynthia Levine, Shrieber Clinical Services Corporation (who remembered this book being recommended by Rosemary Dybwad).

The Ride Together: A brother and sister’s memoir of Autism in the family. (2003) Judy and Paul Karasik. 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 1950s 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. of Toledo Libs., OH, School Library Journal, Amazon.com). Recommended by Karen Lee, Executive Director, SEEC.

Riding the Bus with My Sister. (2003). Rachel Simon. New York; Plume. This perceptive, uplifting chronicle shows how much Simon, a creative writing professor at Bryn Mawr College, had to learn from her mentally retarded sister, Beth, about life, love and happiness. Beth lives independently and is in a long-term romantic relationship, but perhaps the most surprising thing about her, certainly to her (mostly) supportive family, is how she spends her days riding buses. Rachel joined Beth on her rides for a year, a few days every two weeks, in an attempt to mend their distanced relationship and gain some insight into Beth's daily life. She wound up learning a great deal about herself and how narrowly she'd been seeing the world. Rachel juxtaposes this with the story of their childhood, including the dissolution of their parents' marriage and the devastating abandonment by their mother, the effect of which is tied poignantly to the sisters' present relationship. Although she is honest about the frustrations of relating to her stubborn sister, Rachel comes to a new appreciation of her, and it is a pleasure for readers to share in that discovery. (Publishers Weekly) 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. 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.com). Recommended by Diana Lawrence-Brown, Chair, Inclusive Graduate Programs, St. Bonaventure University.

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Secret Girl. (2006). Molly Bruce Jacobs. New York: St. Martin’s Press. Imagine being 13 years old and discovering you have a younger sister secreted away in an institution. For Jacobs, the implications of her family's utter rejection of this sibling, diagnosed with hydrocephalus and labeled mentally retarded at birth, are not fully revealed until she reaches adulthood and survives her own battles with alcoholism and an unsuccessful marriage. When she finally deems herself ready to come face-to-face with the sister she's never seen, Jacobs unearths a shocking portrait of abandonment and denial, exposing parents who were woefully ill equipped to handle imperfection in either of their daughters. For her part, Jacobs admits to being a conflicted sibling. As an adult, a guilt-driven Jacobs tries to compensate for those years of neglect by integrating Anne into her own unsettled lifestyle. With disarming candor, Jacobs creates a graphic account of one family's physical loss and one woman's emotional gain. American Library Association. 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. When Brucie Jacobs, the family’s eldest daughter, finds herself newly sober at the age of 38, she finally seeks out and comes face-to-face with this secret—a younger sister Anne who was diagnosed at birth with hydrocephalus and intellectual disabilities, then institutionalized. Anne has never been home to visit, and Jacobs has never seen her. This memoir goes beyond the story of simply one family; it sheds light upon the struggle for human connection that we all share, and upon the need to accept one’s limitations, as well as to learn forgiveness (Source: MollyBruceJacobs.com). Recommended by Steve Eidelman, Robert Edelsohn Professor, Department of Individual and Family Studies, University of Delaware; and Liz Weintraub, Quality Enhancement Specialist, Council on Quality in Leadership.

Send in the Idiots. (2006). Kamran Nazeer . London: Bloomsbury. As a child diagnosed with autism, Nazeer attended a privately funded New York school program where he and his classmates were painstakingly taught to relate to other people, understand facial expressions, and verbalize their feelings, among other lessons autistics typically struggle with. As an adult with several degrees and a British civil-service job, Nazeer sought out some of his childhood classmates to determine how they function as grownups. While his book is full of anecdotes and narratives about their current lives, jobs, relationships, problems, and coping mechanisms, those stories serve as a jumping-off point for a scholarly yet comfortably approachable Freakonomics-style discursive essay that touches on subjects ranging from changing political styles to uses and misuses of the word "genius" to theories on the purpose and methods of conversation. Nazeer explains autism from the inside - historical views to illuminating personal experiences. A.V. Club. Nazeer, a successful British government policy adviser, was diagnosed early 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, Nazeer visits the school's former director and special-needs teacher to learn how teaching autistic students has evolved. (Source: Publisher’s Weekly, Amazon.com). Recommended by Steve Drake and Phil Ferguson, E. Desmond Lee Professor in Education of Children with Disabilities, University of Missouri – St. Louis.

The Siege: A Family's Journey Into the World of an Autistic Child. (rev. 1982) Original 1967. Clara Claiborne Park. Boston: Little, Brown. At age two, in 1960, 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. This powerfully moving book charts a surprising journey of discovery as it records the challenges and rewards of the first eight years of Jessy’s life. Phil Ferguson writes: "Park is an English professor and writes in a way that I found both honest and insightful." A reader writes: "This is an excellent book that chronicles in minute detail autistic behavior and a family's love and acceptance. Jessy's three older siblings love her unconditionally as do their parents. Theirs is an intellectual family whose literary pursuits are quite evident throughout this account. It is one of the best early personal accounts of autism in a family." Recommended by Phil Ferguson, E. Desmond Lee Professor in Education of Children with Disabilities, University of Missouri – St. Louis.

Six parts love: One family's battle with Lou Gehrig's disease. (1985) R. Rabin. 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 1979 and died in October 1984, conforming to the usual prognosis of death following diagnosis within 3 to 5 years (Source: Ray D. Kent, http://www.mnsu.edu/comdis/kuster2/therapy/firstperson/consumerbooks.html).

The Social Meaning of Mental Retardation: Two Life Stories. (1994). Bob Bogdan and Steve Taylor. New York: Teachers College Press. This was an amazingly powerful story written in first person. To understand the meaning of social retardation, read these life stories. they put an interesting and sad perspective on the manner in which they are dehumanized for being who they are. I would recommend this book for anyone who is ging to be teaching or around these wonderful individuals. Adam Wilson. The concept of mental retardation is challenged through life histories based on in-depth interviews with former residents of institutions for people labeled as having intellectual disabilities. The authors argue that mental retardation is not a real entity, but rather a social construction (Source: Center on Human Policy, Syracuse University). Recommended by Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

Somebody Somewhere: Breaking Free from the World of Autism (1994). Donna Williams. New York: Times Books. The author continues the incredible story of her battle with autism begun in her first book, Nobody Nowhere. Here she offers more revelations about the mind of an autistic person and the role that emotions play in our inner lives."...one of those books that opens your mind. ... — Amazon.com 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). Recommended by Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

Son Rise. (Rev. 1994) Original 1976. Barry Kaufman.Tiburon, CA: H.J. Kramer. In a world where parents of special-needs children are constantly told they don't know what's best for their children and the "experts" favorite answer is to forcefully "modify" a child's behavior to appear normal, this book is a refreshing demonstration of the power of parental love and determination. When told by the recognized experts that their son, Raun, was hopelessly autistic and mentally retarded, uneducable and in need of institutionalization, the Kaufmans chose to look to their child as his own expert. Hours of open-minded observation, experimenting and lovingly joining Raun's actions, gave them a unique understanding of him and the key to reach into his strange world and ultimately inspire him to become a part of theirs. Raun's total recovery from a supposedly incurable disorder is a demonstration that the "experts" don't always know best and that scientific studies often fall short. An Amazon reader. The original Son-Rise (1976) 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. Raun is now a college student and a participant in the family's educational foundation. Testimonials from similarly afflicted families who practice the Kaufmans' techniques for treating the communications disorders round out this chronicle (Source: Publishers Weekly, Amazon.com). Recommended by Ron Taylor, Independent Filmmaker.

Songs of the Gorilla Nation - My Journey Through Autism. (2004). Dawn Prince-Hughes. New York : Harmony Books. This memoir tells how Prince-Hughes learned to manage her form of autism, Asperger's syndrome, by observing and interacting with gorillas. The author's accounts of her early childhood are intensely moving as she describes how she viewed her world and how she tried to deal with it. What makes this book unique is the author's discovery of the gorillas at Seattle's Woodland Park Zoo, and how she learned about personal relationships, the need for companionship, and the need for a group to belong to by watching them. Though she dropped out of school at 16, wanting to learn more about the gorillas helped her to find a focus and led to an eventual Ph.D. in anthropology. American Library Association. 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. (Source: Book Description, Amazon.com). Recommended by Deb Einhorn, Director, Family Matters, Family Support Program, Parent Training and Information Center and ARC Community Support System.

The Spirit Catches You and You Fall Down. (1998). Anne Fadiman. New York: Farrar, Straus & Giroux. Lia Lee was born in 1981 to a family of recent Hmong immigrants, and soon developed symptoms of epilepsy. By 1988 she was living at home but was brain dead after a tragic cycle of misunderstanding, overmedication, and culture clash: "What the doctors viewed as clinical efficiency the Hmong viewed as frosty arrogance." The Spirit Catches You and You Fall Down is a tragedy of Shakespearean dimensions. (Source: Center for Disabilities Studies, University of Delaware).

Staring back: The disability experience from the inside out. (1997) Kenny Fries, Ed. NewYork: Plume. This book 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.” (Source: Center on Human Policy, Syracuse University).

The State Boys Rebellion.  About the boys  deposited at Fernald.  Fascinating.  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."  This was important to Fred. The history of eugenics is in this book as well. It's a great read. I couldn't put  it down. Cynthia Levine.

Sticks and Stones. by Elizabeth Pieper.  Syracuse, NY: Human Policy Press. 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. Review and Recommendation by Jack Yates, Secretary-Treasurer, Ohio Safeguards.

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There’s a boy in here. (1992) Barron, J., & Barron, S. 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. Barron describes in great detail her son Sean’s difficult behaviors and his seeming indifference to his family, as well as her own efforts to simultaneously understand his behaviors and help him diminish them. Sean then retells some of these accounts with his own memories of these events. He emphasizes how these behaviors were not only pleasurable for him, but were an attempt to control his environment and lessen the possibilities of failure. Except for nine months he spent in a residential school, Sean was fully included in general and Sean provides a detailed perspective of his classroom experiences. While the account provides the perspectives of both the parent and the person with autism, unfortunately, the narrative ultimately reinforces the idea that autism is something to be cured or overcome (Source: Center on Human Policy, Syracuse University).

Thinking in Pictures: And Other Reports from My Life. (1995). Temple Grandin. New York: Bantam. 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. (Source: Center on Human Policy, Syracuse University). Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University.

Too Late to Die Young: Nearly True Tales from a Life. (2006). Harriet McBride Johnson. New York: Picador. It's hard to believe that one Charleston, S.C., woman, from the seat of her wheelchair, has faced off President Reagan's Secret Service detail, disrupted a National Democratic convention, joined disability advocates in Cuba and—for 13 years straight—protested the Jerry Lewis muscular dystrophy telethon. Johnson, who was born with a congenital neuromuscular disease, wants kids with disabilities to grow up "prepared to survive," not merely waiting to die. Equally problematic for the spirited lawyer are media heroes like the late Christopher Reeve, who revived "telethon melodrama" by displaying himself as "a disability object, presumably tragic but brave, someone to gawk at." Johnson, whose law practice specializes in disability advocacy, has a personal assistant, a motorized wheelchair and a supportive circle of family and friends that make her active, satisfying life possible. Reed Business Information. 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). Recommended by Fredda Brown, Professor, Special Education, Department of Educational and Community Programs, CUNY/Queens College, Division of Education.

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Uncommon Fathers: Reflections on Raising a Child with a Disability. Meyer, D. (1995). Bethesda, MD: Woodbine House. 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).

Under the Eye of the Clock. (1987). Christopher Nolan. 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.

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Waist-high in the world: A Life among the Disabled. (1997). Nancy Mairs.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).

We Have Been There: A Guidebook for Parents of People with Mental Retardation. Dougan, T., Isbell, L., & Vyas, P. (1979). Salt Lake City, UT: Dougan, Isbell, & Vyas Associates. 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.

Where is the Mango Princess? (1991). Cathy Crimmins. Although it was frightening when Crimmins's husband, Alan, an attorney, suffered a traumatic brain injury (TBI) while on a family vacation, it was his long-term rehabilitation that proved most daunting, for brain injuries can cause significant personality changes. This chronicle of Al's injury, treatment and rehabilitation shows how perplexing and stressful traumatic brain injury can be for both victim and family. Reed Business Information,

What Happened to You: Writing by Disabled Women. (1996) 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.L., Cal., Library Journal, Amazon.com).

What's that pig outdoors?: A Memoir of Deafness. (1990). Henry Kisor. 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. Genial and moving, sharp and witty. With unflinching candor and telling details, Kisor cites the ways in which being deaf among the hearing shaped his personal and professional experiences. Publisher's Weekly. Recommended by Maureen Keyes, Associate Professor, University of Wisconsin – Milwaukee.

Why can’t Sharon Kowalski come home? (1989). Karen Thompson & J.Andrezejewski. 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 (Source: Center on Human Policy, Syracuse University).

Women with Disabilities: Found Voices. (1994). Binghamton, NY: Haworth Press. Mary Willmuth and Lillian Holcomb, eds. 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).

A World Without Words. (1994). by David Goode. During the Rubella Syndrome epidemic of the 1960s, 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.

Why I Burned My Book and Other Essays on Disability (2003). by Paul K.  Longmore. Understanding disability as a major variety of human experience, Longmore urges us to establish it as a category of social, political, and historical analysis in much the same way that race, gender, and class already have been. The essays here search for the often hidden pattern of systemic prejudice and probe into the institutionalized discrimination that affects the one in five Americans with disabilities. The title essay, which concludes the book, demonstrates the necessity of activism for any disabled person who wants access to the American dream. (Amazon)

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Yes! She Knows She's There. (1996) Nicola Schaefer. Toronot, Ont.: Inclusion Press. Nicola Schaefer, a loving mother with the capacity to reflect and the ability to give meaning to experience, has written another chapter to bring us up to date about her daughter Catherine. While she's an extraordinary person, Nicola also reveals herself to be no different from any other mother: she worries she's unsure she has doubts; she makes mistakes. But she believes in life, in the potentialities of friendship, and in the gifts her daughter has to give. As is true about all great stories, this one touches your heart with its honesty and its everyday-ness. Nicola tells us about her struggles to support her family, about how she gets tired, and about how she comes to realize that she needs time for herself. But it is delightful to learn how she takes care of it all without compromising her daughter's opportunities to take her own place in the world. Nancy Thaler. 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.com). Recommended by Diana Lawrence-Brown, Chair, Inclusive Graduate Programs, St. Bonaventure University; and David Wetherow, CommunityWorks.

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Other Books (fiction and non-fiction, but not memoir-style)

Abandoned to their fate: Social policy and practice toward severely retarded people in America, 1820-1920. (1994) Phil Ferguson. Philadelphia: Temple University. 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 (Source: Center on Human Policy, Syracuse University).

A world without words: The social construction of children born deaf and blind. (1994) David Goode. Philadelphia: Temple University. During the Rubella Syndrome epidemic of the 1960s, many children were born deaf, blind, and 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 intellectual disabilities. 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.edu). Recommended by Phil Smith, Assistant Professor, Special Education, Eastern Michigan University.

Bending over backwards: Disability, dismodernism & other difficult positions. (2002) L. J. Davis. 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. 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 (Source: Center on Human Policy, Syracuse University).

Claiming disability: Knowledge and identity. (1998) Simi Linton. New York: New York University. 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 (Source: Center on Human Policy, Syracuse University).

Communication unbound. (1993) Doug Biklen. New York: Teacher's College Press. 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. Kent, http://www.mnsu.edu/comdis/kuster2/therapy/firstperson/consumerbooks.html).

Christmas in purgatory: A photographic essay on mental retardation. (1974) Burton Blatt & F. Kaplan. 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 (Source: Center on Human Policy, Syracuse University).

The curious incident of the dog in the night-time. (2003) M. Haddon (Fiction) New York: Doubleday. Christopher Boone, the autistic 15-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. As the mystery leads him to the secrets of his parents' broken marriage and then into an odyssey to find his place in the world, he must fall back on deductive logic to navigate the emotional complexities of a social world that remains a closed book to him (Source: Excerpted from Publisher’s Weekly, Amazon.com).

Disability at the dawn of the 21st Century and the state of thestates. (2002) D. Braddock, Ed. Washington, DC: American Association on Intellectual and Developmental Disabilities 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. Part II presents updated state-by-state profiles, which examine programmatic structure and financing of 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 (Source: Center on Human Policy, Syracuse University).

Disability politics: Understanding our past, changing our future. (1996) Michael Oliver & J. Campbell, 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. 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).

Everyone here spoke sign language: Hereditary deafness on Martha's Vineyard. (1985) N. Groce. 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. (Source: Center on Human Policy, Syracuse University).

Freak show: Presenting human oddities for amusement and profit.(1988) Robert Bogdan. 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).

Forgotten Crimes: The Holocaust and People with Disabilities. Evans, S. (2004). Chicago, IL: Ivan R. Dee Press. A stark look at the policies and actions towards people with disabilities of the Third Reich during the 1930s. Such programs as "The Children’s Killing Program" and the "T4 Adult Euthanasia" program. This sometimes unremembered step toward the larger holocaust is documented in this readable, relatively short book. (Source: Center for Disability Studies, University of Delaware).

From Disability to Possibility: The Power of Inclusive Classrooms. (2006). Patrick Schwarz. From Disability to Possibility leads the way presenting the specific kinds of teaching, classroom practices, and support approaches that will make this new model of possibility a reality. Drawing on the stories of learners, both with and without disabilities, as well as families and teachers, Patrick Schwarz shows you not only why many current special education frameworks don’t work, but also how they damage children, often for life. Then he demonstrates how possibility studies offers a meaningful, practical, and doable alternative to traditional special education practices both during the school years and after. This book illustrates, through stories of struggle and success, how creative, conscientious teachers can work with everyone involved in a student’s learning to make special education work.

Getting Life. (2002) Julie Shaw Cole. Louisville, KY: Avocado Press. 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. What makes this so interesting a task is that 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, but more importantly it's a fascinating one which takes us into the minds of several nursing home residents, touches on the lives of several staff members of an independent living center and includes an ADAPT-like group for emphasis. As I read, my only regret was that not every town has an independent living center like the one in the book - patient, knowledgeable, resourceful, and persistent. (Source: Steven E. Brown, Institute on Disability Culture, AdvocadoPress.org).

Honor Thy Son. (1994). Lou Shaw. Jack Ingraham deserts his family when his first child, J.J., is born with a disability. Years later J.J. is implicated in a murder, and Jack gets involved with his son for the first time. "As soon as I started reading, I could see J.J. in my mind. I love the suspense.”--Chris Burke, star of "Life Goes On.”

Idiots: Stories about mindedness and mental retardation. (2001) D. R. Linneman. NewYork: 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 intellectual disability. 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 (Source: Center on Human Policy, Syracuse University).

In This Sign (1984). Joanne Greenberg. Joanne Greenberg has taken the world of the deaf and made it an extension of everyone's experience-and made it a metaphor for childish innocence, for grown-up alienation and loneliness . . . and for the inability of all of us to truly listen and speak. -The New York Times.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. In a story that spans four generations, we are witness to one family’s struggle to carve a place for itself out of the tides of wealth, war, and human strivings that have swept America in this century (Source: Publisher book description, Amazon.com).

Jewel. (1991) B. Lott (Fiction) New York: Washington Square Press. In the backwoods of Mississippi, a land of honeysuckle and grapevine, Jewel and her husband, Leston, are truly blessed; they have five fine children. When Brenda Kay is born in 1943, Jewel gives thanks for a healthy baby, last-born and most welcome. Jewel is the story of how quickly a life can change; how, like lightning, an unforeseen event can set us on a course without reason or compass. In this story of a woman's devotion to the child who is both her burden and God's singular way of smiling on her, Bret Lott has created a mother-daughter relationship of matchless intensity and beauty, and one of the finest, most indomitable heroines in contemporary American fiction (Source: Book Description, Amazon.com). Recommended by Deanna Pedicone, Project Coordinator, Center for Disabilities Studies, University of Delaware.

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Make them go away: Clint Eastwood, Christopher Reeve & the case against disability rights. Louisville, KY: Advocado. This 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” (Source: Center on Human Policy, Syracuse University).

The Memory Keeper's Daughter (2006). Kim Edwards.( Fiction). New York: Viking Press. The story is about a family in the 1960's who have twins & one of them has Down syndrome. 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. They story is not just about Down syndrome but some really nice things are woven in the story about expecting your child w/a disability can learn, starting support groups, fighting w/schools for inclusion, the IDEA, etc. It also shows how a family is torn apart by an unknown secret. Review and recommendation by Deborah Safarik.

More Than a Mom: Living a Full and Balanced Life When Your Child Has Special Needs. (2006). Amy Baskin & Heather Fawcett. BEthesda: Woodbine House. Explores how women can lead rich, fulfilling personal lives while parenting a child with special needs. The authors’ skillful blend of research, personal experiences, and survey feedback from over 500 mothers across North America results in a book that is jam-packed with practical strategies, advice, and reassurance for mothers trying to create more manageable and fulfilling lives. (Book Description, Amazon.com). Recommended by Deborah Safarik.

Nothing about us without us: Disability oppression and empowerment. (1998). J. I. Charlton. 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). Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University.

The Power of the Powerless. Christopher de Vinck (be careful, there are other books out there with the same title). (non-fiction) Michael Lipsky's "Street-Level Bureaucracy," which revolves around the observation that in public services (and who knows where else?) "policy" is usually shaped--made, if you will--in the daily interactions of public service workers with members of the public.

The state boys rebellion. (2004) M. D'Antonio. New York: Simon & Schuster. About the boys deposited at Fernald, a state institution in Massachusetts. Fascinating. 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." This was important to Fred. The history of eugenics is in this book as well. It's a great read. I couldn't put it down. Recommendation and review by Cynthia Levine, Shrieber Clinical Services Corporation.

Views from Our Shoes Growing Up with a Brother or Sister with Special Needs. (1997). Ed. Don Meyer/ Illustrated by Cary Pillo. Although the number of books about disabled children has grown steadily, not many nonfiction books explore the feelings of a disabled child's brother or sister. These unpretentious, honest snippets, contributed by 45 children ranging in age from 4 ("My Mommy and Daddy told me that Nicole was born very early and her brain got hurt") to 18, seek to fill that gap. In talking about their sibs and their feelings, the writers admit to embarrassment ("I'm sure glad he doesn't go to my school . . . if they find out that he's my brother, they'd laugh"), anger, and jealousy. But at the same time, they show how protective and loving and surprisingly wise they are when it comes to getting along in a family that is different. Stephanie Zvirin

We Are All Welcome Here. (2006). Elizabeth Berg (Fiction). New York: Random House. As a student nurse, Paige Dunn once took care of Elvis Presley's mother in Tupelo, MS. 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 the girl wins $2500 in a contest, Paige gives most of the money to Peacie for medical care for her boyfriend, who was badly beaten for participating in a civil rights demonstration. 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 1960s (Source: Molly Connally, Chantilly Regional Library, Fairfax County, VA, School Library Journal, Amazon.com) Recommended by Carol Beatty, Executive Director, The Arc of Howard County..
 
We Dance Together, A Painted Essay about my Education with Katie. (2005). Candee Basford. Ohio: Author. A picture book that communicates the story of the author’s education with her daughter Katie. The journey begins when the author learns of her daughter’s diability and continues for the next twenty-six years weaving lessons of love, relationships, ambiguity and more. Painted and narrated by the author, We Dance Together features ten richly, evocative images, each revealing a lesson about self and society. The images depict her personal, often joyful revelations that lie in stark contrast to our society’s history of negative attitudes and actions toward people with disabilities. (WeDanceTogether.com).

What About Me?: Growing Up with a Developmentally Disabled Sibling. A wonderful resource and one that families with disabled children have needed for a long time. Edward Ziegler, Ph.D., Yale University

We have been there: A guidebook for parents of people with mental retardation. (1979) Salt Lake City, UT: Dougan, Isbell, & Vyas Associates. 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).

Why I burned my book and other essays on disability. (2003) Paul Longmore. Philadelphia:Temple University.

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 (Source: Center on Human Policy, Syracuse University). Recommended by Mary Cerreto, Associate Professor of Family Medicine, Boston University.

for Disabilities Studies, University of Delaware).

 

 

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For Children

The Best Worst Brother. (2005). Stephanie Stuve-Bodeen/Ilustrated by Charlotte Fremaux. This sequel to We'll Paint the Octopus Red (Woodbine, 1998) follows the relationship between three-year-old Isaac, who has Down's syndrome, and his older sister, Emma, who is frustrated by his slow language and motor development. Because he does not yet have the skills required for speech, the family attempts to teach him sign language. Emma works hard to make her brother understand, but he doesn't seem to make much progress. However, by the end of the book, he demonstrates that he is capable of learning, albeit at a slower pace than she expects. Emma, in turn, shows more understanding of his developmental disability and takes great pleasure in his successes. Amazon.

Petey. (2000). Ben Mikaelsen. A novel about the relationship between a teenager and a man mistakenly institutionalized for much of his life. Part one of the novel relates Petey's "backstory": in 1922, at the age of two, his distraught parents commit him to the state's insane asylum, unaware that their has severe cerebral palsy. Petey avoids withdrawal and depression despite the horrific conditions in his new "home" and, over the course of 60 years, caretakers befriend but then leave him. The point of view in part two shifts from Petey to Trevor, an eighth-grader suffering from both lack of friends and lack of parental attention after a series of moves. Trevor finds the answer to his needs in an unlikely friendship with the 70-year-old Petey, who has moved to a nursing home. Ages 10-up. Copyright 1998 Reed Business Information, Inc.

Stuck in Neutral. (2001). Terry Trueman . A truly unique journey into the mind of a truly unique character. Shawn McDaniel, who is literally trapped in his own body, will serve as a powerful metaphor for teens who feel cornered by circumstances or their own physical shortcomings. Terry Trueman's first-person portrayal of Shawn is made all the more poignant by the fact that Trueman's own son, Henry, also has cerebral palsy. This is an original and moving debut. (Ages 11 to 15) --Jennifer Hubert

We'll Paint the Octopus Red. (1998). Stephanie Stuve-Bodeen/ Illustrated by Pam DeVito. Emma isn't happy to learn that she will soon be a big sister. After talking with her father, however, she thinks of "at least a million things my new brother or sister could do with me," and she eagerly awaits her sibling's arrival. When Isaac is born, the family is confronted with the fact that he has Down Syndrome. Emma's father explains that Isaac will still be able to do all of the things that Emma has thought of; he will just do them at a slower pace. The story ends on a high note with an excited Emma and her father visiting Isaac and her mother in the hospital. (K-3). School Library Journal.

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Copyright @ 2006 by Susan Fitzmaurice All Rights Reserved
Last updated: June 30, 2007 9:35 PM