Following is a terrific — if somewhat ancient — list of books by authors with various disabilities. It was compiled by Barbara Beckwith of the National Writers Union, and was last updated in 1999—which means the only recent books are a few that came to my attention. Still, most of these books are well worth reading. (I’ve placed a star * or two ** on titles I particularly recommend.)
This is something new in the world of disability writing–stories from parents who feel like they don’t always fit in with disability organizations or support groups. You know what I mean–people who do sex writing, for instance, or live in communes, or in polyamorous arrangments–anything outside the mainstream. I’ll never forget the first time I went to a conference, surrounded by a very homogenous group of 300 middle-class people, terrified my grown kids might innocently blow my cover; I told people I wrote newsletters.
I’ve got two pieces in the book–one anonymous (so as not to publicly criticize the hard-working group described therein) and another that’s a version of My Friend Christine, on this blog. You can visit the book on facebook.
My Body of Knowledge is a collection of personal essays, poetry, and fiction that accesses the wealth of insight and knowledge people with disabilities often gain simply from living in their bodies. This collection gathers 34 pieces of writing from both new and established authors, including Molly Ivins, Floyd Skloot, and Yours Truly. Honest, raw, humorous, and poignant, the writing captures experiences of those with cancer, depression, chronic fatigue syndrome, Crohn’s disease, paralysis, repetitive strain injury, Lyme disease, multiple sclerosis, hydrocephalus, muscular dystrophy, AIDS, and other physical conditions.
Codeine Diary: True Confessions of a Reckless Hemophiliac, by Tom
Andrews (Little Brown 1998 hardback; Harcourt Brace 1998
paperback). After experiencing pain that only codeine could quell, and a long, slow convalescence including grueling physical therapy, Andrews took his wife’s advice to “write it all down.” Often hilarious, Andrews’ memoir transcends its subject and becomes the story of a man’s desire to inhabit the world fully no matter what the cost.
Horizontal Woman: The Story of a Body in Exile (Houghton Mifflin
1996) by Suzanne E. Berger. Memoir of the six years Berger spent
“living lying down” after a back injury (from bending down to
pick up her child) damaged the connective tissues that allow her
to stand upright (hypermobile sacrum). Her “invisible” disability causes people to misinterpret why she lies down in stores, theaters, or airports.
Wired for Sound: A Journey into Hearing, by Beverly Biderman
(Trifolium Press, 1998). Biderman tells the story of her deafness
and of her decision to have a cochlear implant, an artificial
Big Girls Don’t Cry by Connie Briscoe (Ballantine 1994) Briscoe, an African-American, was born with a mild hearing loss but in her late 20’s went from 20 to 80 percent hearing loss.
Don’t Worry, He Won’t Get Far on Foot, by John Callahan (1989 Wm
Morrow hardback. 1990 Vintage paperback). The 38-year-old
cartoonist, a quadriplegic and recovering alcoholic, tells the
story of his life with taboo-shattering humor.
Meditations From a Movable Chair, essays by Andre Dubus, who died
of a heart attack in February, 1999. Dubus was struck by a car in 1986 when he stopped to help a couple whose car had broken down on the side of the highway. One leg was amputated, the other paralyzed. Dubus, considered a master of the short story, has published several collections as well as novels.
Bone Truth: A Novel, by Anne Finger (Coffee House Press 1994)
A disabled activist, facing an unplanned pregnancy, reflects back
on her battles with polio and repeated surgeries. Finger has
achieved recognition for her photographs of nude, disabled women.
The Seeing Glass: A Memoir (Riverhead hardback 1997, paperback
1998) by Jacquelin Gorman. The sudden onset of multiple sclerosis
leaves the author temporarily blind. Gradually, her sight does
return, though imperfectly. Meanwhile, she allows her blindness
to help her recall memories of her autistic brother, who was
sent away to a mental institution at age 12 –memories that she
had dutifully erased many years before.
Thinking in Pictures and Other Reports from My Life With Autism,
by Temple Gradin (foreword by Oliver Sacks). (Doubleday hardback
1995, Vintage paperback 1995). Writing from the dual
perspectives of a scientist and an autistic person, Gradin tells
how she experiences autism and how she managed to function in
the outside world.
*Autobiography of a Face (Houghton Mifflin 1994), by Lucy Grealy.
Grealy is an award-winning poet. Because of cancer, half her
jaw had to be removed in childhood, which gives her face a
Twitch and Shout: A Touretter’s Tale, by Lowell Handler (Dutton
1998; Penguin/Plume 1999). Lowell Handler is a photojournalist, and was the narrator and associate
producer of the Emmy-nominated PBS documentary Twitch and Shout.
**Moving Violations: War Zones, Wheelchairs, and Declarations of
Independence (Hyperion 1995), a memoir by John Hockenberry, ABC
News correspondent. Hockenberry has been a paraplegic since an auto accident at age nineteen. He spent more than a decade with
National Public Radio as a general assignment reporter, Middle
East correspondent, and program host. He describes riding a mule
up hillsides in Iraq to cover Kurdish refugees, navigating his
wheelchair through Middle Eastern sand, auditioning to be the first journalist in space, and dealing with crip sex and the inaccessibility of NY subways.
Stuttering: A Life Bound Up in Words (Basic Books 1997), by Marty
Jezer. Jezer describes his lifelong struggle to speak fluently, via meditation, speech therapy, psychotherapy, oration, and finally the self-help movement. His memoir goes from childhood to parenthood, and includes how, after a job hunter told him he was unemployable, he created his own career.
Count Us In: Growing Up With Down Syndrome, by Jason Kingsley,
Mitchell Levitz, Andy Bricky (Harvest Books, 1994). Two young men
with Down syndrome celebrate, with the support and word-
processing assistance of their mothers, their successful coming
of age and hard-won independence. The book, written in dialogue
form, is drawn from 50 conversations between the two young men
over the course of three years. They talk of the usual issues of
adolescence: sex, girls, God, death, love, war, independence.
Slack Jaw, by Jim Knipfel. (Putnam/Jeremy P. Tarcher 1999) A darkly comic memoir in which the author traces his 3-decade descent into blindness caused by a rare genetic disease, retinitis pigmentosis. A columnist and staff writer at The New York Press, Knipfel spares no one — including himself–in his manic story.
Sight Unseen, by Georgina Kleege (Yale University 1999). Legally
blind (she has 10% sight) since the age of 11, Kleege describes
her own experience with and the world’s view of visual
impairment. “I hope to turn the reader’s gaze outward, to say not
only ‘Here’s what I see’ but also ‘Here’s what you see,” to show
both what’s unique and what’s universal,'” says Kleege, a
novelist, essayist, and translator. Kleege describes the negative social status of the blind, analyzes stereotypes perpetuated by movies, and discusses how blindness has been portrayed in literature.
Planet of the Blind: A Memoir, by Stephen Kuusisto (Dial Press
1998). Kuusitso, legally blind since birth, describes the decades
of his life in which he tried to pass as a sighted person, and
how finally acquiring a seeing eye dog changed his life.
The Invention of George Washington, by Paul K. Longmore
(University Press of Virginia 1999). Because of childhood
polio, Longmore has no use of his arms, has a severe spinal
curvature, and sleeps with a ventilator. He wrote an important
edtiorial in Newsweek calling for changes in disability
regulations to allow him to collect royalties on books he
publishes without losing medical insurance and assistive devices.
Everybody’s Different: Understanding and Changing Our Reactions to Disabilities, by Nancy B. Miller, Catherine C. Sammons (Paul H. Brookes Pub Co, April 1999). Authors explore how our reactions to and beliefs about disabilities influence our progress toward
an inclusive society, and share their innovative approach to become more at ease with the concept of disability. Includes specific interaction tips and awareness activities that show how we see differences. Gives practical ways to improve our personal, professional, and community relationships.
*Waist-High in the World: A Life Among the Nondisabled (Beacon
1996), by Nancy Mairs. Mairs is an essayist and teacher. With the progression of her multiple sclerosis, she now uses a wheelchair.
A Nearly Normal Life (Little Brown 1995) by Charles L. Mee. The
Brooklyn-based playwright and author describes his experience
having his legs paralyzed by polio in the 1950s and his life
Remembering Mr. Shawn’s New Yorker, by Ved Mehta (Overlook Press
1998). Author of 21 books (including fiction, travel,
biographies, history, and theology), Mehta writes a memoir of his
editor, William Shawn of the New Yorker. In the process, Mehta
tells the equally interesting story of the shaping of his own
career. Mehta was born in British India, educated in England and
the U.S., and became a writer at the New Yorker at age 25. He has
been blind since childhood.
A Stillness Built of Motion: Living With Tourette’s (Echolalia
Press 1996), by Emma Morgan. A volume of poetry by Morgan, who has both a disability (Tourette’s
Syndrome, a congenital neurological disorder) and a chronic
The Me in the Mirror, by Connie Panzarino (Seal Press 1994). In
this memoir, Panzarino writes of her relationships with family
members and her long-time lover Ron Kovic (author of Born on the
Fourth of July), her eventual turn to lesbianism, and her years
of pioneering work in the disability rights movement. She was
born with Spinal Muscular Atrophy.
Reynolds Price: A Whole New Life: An Illness and a Healing (Plume
1994). Price, one of America’s most acclaimed and accomplished
writers, recounts without self-pity his struggle with cancer,
which made him a paraplegic, with agonizing, intractable pain,
with the trials of rehab and with reliance on drugs. Price did
**Still Me, by Christopher Reeves (Random House 1998). The actor
writes about his experience and his activism on disability issues.
After the Stroke: A Journal, by May Sarton (W W Norton 1990). The prolific author (House by the Sea, At Seventy: A Journal) describes her stroke and slow recovery.
Slow Dance: A Story of Stroke, Love, and Disability, by Bonnie
Sherr Klein (PageMill Press 1998/originally published by Knopf
Canada). The award-winning filmmaker was struck in 1987 (she was in her mid-
forties) by a stroke. From a “locked-in state” she recovered
enough to get around with canes or on Gladys, her motorized
*The Body’s Memory, by Jean Stewart (St. Martins, 1989) Stewart uses journal entries, poems, third-person narratives, lyrical inner monologues and letters to tell the story of her becoming disabled from cancer. The Disability Rag called it “The first real novel for a disability rights movement.”
Bare-Bones Meditation: Waking Up From the Story of My Life, by
Joan Tollifson (Bell Tower, 1996). Tollifson portrays her
struggle against society’s labels (she was born without a hand)
and cultural biases (she is a lesbian). She finds identity as a
bisexual lesbian and a disability rights activist, but also sinks
into drug addiction and alcoholism, then embraces Zen Bhuddism,
and finally discovers a very bare spirituality that has no form.
Anthologies by Writers with Disabilities:
**Staring Back: The Disability Experience from the Inside Out
(Plume 1997), edited by Kenny Fries. Nonfiction, poetry, fiction
and drama by 38 writers with disabilities, including Andre Dubus,
Stanley Elkin, Anne Finger, Lucy Grealy, Marilyn Hacker, John
Hockenberry, Ved Mehta, Emma Morgan, Adrienne Rich.
With Wings: An Anthology of Literature by and about Women with
Disabilities (The Feminist Press 1987), edited by Marsha Saxton
and Florence Howe. Thirty writers, both well-known (Nancy Mairs,
Adrienne Rich, Muriel Rukeyser, Alice Walker) and previously
unpublished, go beyond clichéd inspirational tales to describe
the day-to-day reality of disabled women’s lives.
What Happened to YOU? Writing By Disabled Women, edited by Lois
Keith (The Women’s Press/London 1994; The New Press 1996). The
anthology covers the psychological aspects of each individual
woman’s experience with disability.
Eyes of Desire: A Deaf Gay And Lesbian Reader, edited by Raymond
Luczak (Alyson Press 1993). The writers tell about their lives:
sexual identity, barriers to communication in a sound-based
world, and creating a deaf gay and lesbian culture in a world
that is too often afraid of differences.
Pushing the Limits: Disabled Dykes Produce Culture, edited by
Shelley Tremain (Women’s Press, October 96). Poetry and
autobiographical works about sexuality, disability, and the
interactions between the two.
With the Power of Each Breath: A Disabled Women’s Anthology
(Cleis Press 1985), edited by Susan E. Browne, Debra Connors and
Nanci Stern. The anthology’s 45 contributors include Maureen
Brady and Ann Finger. Highly political, personal, and
unromanticized, the pieces in this book cover the economic,
psychological, and physical aspects of the contributors’ experience.
A Selection of Practical Guides:
One-Handed in Two-Handed World (Prince-Gallison Press 1996), by
Tommye K. Mayer.
Mayer self-published her step-by-step guide to managing “just about
everything” with the use of one hand. This how-to book is based
on her experience coping with everyday life after her stroke at
age 21. The book includes illustrations.
A Guide for People Who Become Deaf or Severely Hard of Hearing: A
Late-Deafened Consumer’s Perspective, by Karen Rockow
(Massachusetts Commission for the Deaf and Hard of Hearing 1997).
Stroke (Deerfield River Press 1996), by Margaret Robison. Her
pre-stroke poetry books include The Naked Bear, Red Creek, and
Here. Robison leads writing workshops for women with disabilities
and for people in nursing homes and senior centers. She has no
use of her left arm or hand, has difficulty speaking, and uses a wheelchair.
Living Well With a Hidden Disability: Transcending Doubt and
Shame and Reclaiming Your Life, by Stacy Taylor, Robert Epstein
(New Harbinger Publications, May 1999). The author is disabled by
chronic illness and offers strategies to those who appear able-
bodied but who are disabled by chronic health problems such as
lupus, fibromyaligia, chronic fatigue syndrome, chronic pain, inner ear problems, etc.
The Fibromyalgia Relief Book: 213 Ideas for Improving Your
Quality of Life (Walker and Co. 1998), by Miryam Ehrlich Williamson.
Books By Non-Disabled Writers:
**A Difference in the Family, by Helen Featherstone (Viking 1981)
Shows how families cope with the responsibilities of a disabled child. Gives first-hand accounts of people who have various relationships with a disabled person, including those with physical, mental, and emotional disabilities.
Life as We Know It: A Father, A Family, and an Exceptional Child,
by Michael Berube (Vintage 1998). When Jamie Berube was born with
Down syndrome in 1991, he was immediately subjected to medical
procedures, representations, insurance guidelines and policies
that surround every child our society designates as disabled.
Berube describes not only the challenges of raising his son but
the challenge of seeing him as a person rather than as a medical,
genetic or social problem.
Train Go Sorry, by Leah Hager Cohen (Houghton Mifflin 1994).
Memoir about growing up among deaf people. Cohen is bi-lingual
(ASL/ENGLISH) and a native signer. Her book deals with the
controversy over mainstreaming and the use of cochlear implants
vs. the right to choose to be culturally Deaf. The title is an
exact translation from American Sign Language; it basically
means, “Sorry, the train has already left.”
**No Pity: People with Disabilities Forging a New Civil Rights Movement
By Joseph P. Shapiro (Times Books , 1990) Shapiro traces the history of the disability rights movement by identifying individual strands that eventually came together: the 1988 deaf students’ protests demanding that a deaf president be installed at Gallaudet University; People First; the development by users of lightweight wheelchairs; Berkeley’s evolution to “a mecca for the handicapped.” Inspirational story of a progressive social movement.
Perfectly Normal: A Mother’s Memoir, by Marcy Sheiner. (New Disability Press, iUniverse.com 2000). A mother’s experience of giving birth to and raising a child with a hidden disability, hydrocephalus, a neurological disorder.
Why Can’t Sharon Kowalski Come Home? by Karen Thompson
(Spinsters/Aunt Lute 1988). Kowalski was profoundly disabled when
a drunk driver struck her car, leaving her unable to move or
communicate. Thompson, her life partner and a physical therapist, helped Thompson with early rehab and communicating via a letter board. Kowalski’s parents won a years-long custody battle and ousted Thompson from their daughter’s life, denying that their daughter had been lesbian. They eventually put Sharon into a nursing home.
Thompson, an Assistant Professor of Physical Education and
Recreation and Adjunct Professor of Human Relations at St. Cloud
State University in Minnesota, became both “out” and outspoken: she won many awards for her justice work on behalf of disabled people and same-gender couples.
An Anthropologist on Mars: Seven Paradoxical Tales, by Oliver W.
Sacks (Vintage 1996). Neurologist Sacks shows how people adapt to
neurological conditions such as color blindness, Tourette’s
syndrome, seizures, autism, etc.; including a blind man given the
ambiguous gift of sight, and a painter who loses color vision but
finds new creative power in black and white. Sacks gives readers
an appreciation of the adaptability and power of human beings
when confronted with diversity. He is author of The Man Who
Mistook His Wife for a Hat and Other Clinical Tales.
Books Written for Academics or Human Service Providers:
Psychosocial Aspects of Chronic Illness and Disability Among
African Americans, by Faye Z. Belgrave (Auburn House 1998).
Looks at the prevalence of disabilities and chronic illness among
African Americans and explores cultural factors and factors that
contribute to successful outcomes.
Recovering Bodies: Illness, Disability, and Life-Writing
(Wisconsin Studies in American Autobiography, by G. Thomas Couser
(University of Wisconsin Press 1997). Couser, a professor of
English at Hofstra University, analyzes personal narratives by
people with HIV-AIDS, breast cancer, paralysis, and deafness. He
considers why and under what circumstances people choose to write
about illness or disability, what role does plot play in such
narratives? How is closure achieved?
Defects: Engendering The Modern Body (Corporealities, Discourses of Disability), edited by Helen Deutsch and Felicity Nussbaum (U. Michigan Press, November 1999).
Everyone Here Spoke Sign Language: Hereditary Deafness on
Martha’s Vineyard, by Nora Ellen Groce, John W.M. Whiting
(Harvard University Press, pb reprint 1998). Describes how the
hearing residents of a Massachusetts town where a high proportion
of the townspeople were deaf learned sign language. When later
interviewed by Groce, the residents could not always remember who
was deaf and who was not, since everyone communicated easily with each other.
Disability: A Diversity Model Approach in Human Service Practice,
by Romel Mackelprang and Richard Salsgiver (Brooks/Cole 1999).
The book covers societal and professional stereotypes, disability culture, disability history in the U.S., life stage development, and particular chapters on persons with mobility disabilities, deaf and hard-of-hearing people, persons with visual disabilities
and blindness, persons with developmental disabilities, persons with psychiatric disabilities, persons with cognitive disabilities. A third section deals with assessment in human service practice, models of professional practice, and guidelines for practice with persons with disabilities.
Understanding Disability: From Theory to Practice, by Michael Oliver (St. Martin’s Press 1996).
Beyond Ramps: Disability at the End of the Social Contract, by
Marta Russell (Common Courage Press 1998). Russell has written a
“devastating analysis” of the “reform” of the social safety net,
according to reviewers. Andrew Cockburn calls the book “vividly
written…goes to the heart of many matters, starting with the
profound desire of ‘normal’ people, many of them supposedly
broad-minded types squarely within the liberal tradition, to
reach for the sterilizing knife, or the medicine cabinet of Dr.
Kevorkian when confronted with an affront to their sense of the
‘normal.'” Disabled from birth, Russell began writing when her
disability progressed and she had to navigate the disability
policy netherworld to survive.
Magazines that focus on work by writers with disabilities:
(Caveat: I have no idea if these magazines are still publishing.—MS)
P.O. Box 491861
Los Angeles CA 90049
(new address as of 1999)
Hikane: The Capable Woman
PO Box 841
Great Barrington MA 01230
International Magazine of Literature, Fine Arts, and Disability
701 South Main St.
Akron OH 44311-1019
I just read a very interesting review of The Memory Keeper’s Daughter, on Simi Linton’s website:
- Walgreens Bets Big On Employees With Disabilities (ahrcnyc.wordpress.com)