“...... Account from Paris of a Terrible Operation” (1812) by Frances Burney 5 English author Frances Burney recounts her breast cancer diagnosis and the radical mastectomy she underwent in Paris in 1811. Because the mastectomy was performed without the aid of anesthesia, she was able to provide a detailed description of her experience and her interaction with various doctors before and during the procedure.

After...... the Stroke: A Journal (1988) by May Sarton 10 May Sarton uses her diary entries over the course of nearly a year following a mild stroke to document her treatment, solitude, struggle to write, and recovery. Throughout the text she discusses the value of friendships, the deficiencies in modern medicine, and the healing properties of nature.

And...... There Was Light: The Extraordinary Memoir of a Blind Hero of the French Resistance in World 14 War II (1953) by Jacques Lusseyran And There Was Light is Jacques Lusseyran’s memoir of being blinded in an accident when he was a child and then later leading a French Resistance group during the German occupation of France in World War II.

...... Aphasia, My World Alone (1973) by Helen Harlan Wulf 18 Aphasia, My World Alone is Helen Harlan Wulf’s account of her experience of aphasia (speech impairment) after suffering a stroke. She explains adaptations she had to make because of difficulties in communicating, and she emphasizes the negative impact of medical professionals who are dismissive of patients with aphasia.

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Assembly...... Required: Notes from a Deaf Gay Life (2009) by Raymond Luczak 22 Assembly Required is a collection of autobiographical essays by Raymond Luczak that reflect on his identity as a Deaf gay man. His essays describe important events leading to his discovery of, and eventual participation in, gay and Deaf cultures.

Autobiography...... of a Face (1994) by Lucy Grealy 26 Lucy Grealy’s work recounts her battle with Ewing sarcoma as a child, which left her with facial disfigurement. She also explores the profound impact self-image has on a person, especially a woman.

The...... Autobiography of Charles Darwin, 1809–1882 (1887) by Charles Darwin 30 Charles Darwin’s autobiography is a personal account of his private and professional life, including his time on the HMS Beagle and the development of his theory of natural selection. Darwin repeatedly refers to a debilitating illness throughout this work but does not give details; the nature of his health problems has been the source of considerable and usually highly speculative debate among scholars.

The...... Autobiography of James L. Smith: Including, Also, Reminiscences of Slave Life, Recollections of the 35 War, Education of Freedmen, Causes of the Exodus, Etc. (1881) by James L. Smith The Autobiography of James L. Smith is the personal account of an impaired slave’s life in the American South and his later escape to the North. Smith’s narrative explores slavery’s physical toll, its relationship to disability, and its lasting influence on African American citizenship and identity.

The...... Ballad of Blind Tom (2009) by Deirdre O’Connell 40 The Ballad of Blind Tom is Deirdre O’Connell’s biography of the enslaved pianist and composer Tom Wiggins (1849–1908), who was blind and, many now believe, an autistic savant.

The...... Bells of Nagasaki (1949) by Takashi Nagai 45 The Bells of Nagasaki is a memoir by radiologist Takashi Nagai about the American atomic bombing of Nagasaki, Japan, in August 1945. The book explains the destructive effects of the bombing and details the relief efforts undertaken by Nagai and his colleagues.

Beyond...... the Pale: Folklore, Family, and the Mystery of Our Hidden Genes (2015) by Emily Urquhart 50 Emily Urquhart’s memoir details her experiences as the mother of a young daughter diagnosed with albinism. Urquhart, a writer and folklorist, describes her study of her family’s history for evidence of albinism, her experiences with superstitious and prejudicial treatment of people with albinism in Tanzania, and her research into the representation of albinism throughout history and in other cultures.

Bitter...... Medicine: A Graphic Memoir of Mental Illness (2010) by Clem Martini and Olivier Martini 54 This graphic memoir by brothers Clem and Olivier Martini addresses their individual experiences with schizophrenia, an illness shared by both Olivier and their brother Ben. Clem and Olivier discuss the disease’s impact on their family, the deficiencies of the health-care system when dealing with mental illness, and the difficulty finding medications without harmful side effects.

Blindsided:...... Lifting a Life above Illness: A Reluctant Memoir (2004) by Richard M. Cohen 58 Emmy Award–winning journalist and television news producer Richard M. Cohen writes about living with multiple sclerosis (MS) and surviving colon cancer. The memoir offers a first-person account of Cohen’s decades with progressive chronic illness, its effects on the body and psyche, his two bouts of colon cancer, and the impact of both conditions on his work and family life.

Bob...... Flanagan: Supermasochist (1993) by Bob Flanagan; interviews by Andrea Juno and V. Vale 62 Bob Flanagan: Supermasochist is a collection of interviews with performance artist Bob Flanagan, who confronted the complications and effects of cystic fibrosis through sadomasochism. viii DISABILITY EXPERIENCES TABLE OF CONTENTS

The...... Body Broken: A Memoir (2009) by Lynne Greenberg 67 The Body Broken details Lynne Greenberg’s various treatment efforts to deal with chronic pain, the result of an accident in which she broke her neck. She recounts the devastating effect of pain on her life and her relationships with her family, and she records her efforts to understand her suffering through literature.

Body,...... Remember: A Memoir (1997) by Kenny Fries 71 Writer Kenny Fries was born with incompletely formed legs, a congenital condition that entailed multiple surgeries to partially correct. His memoir explores issues of identity and the intersectionality of being disabled, gay, and Jewish.

The...... Body Silent: The Different World of the Disabled (1987) by Robert F. Murphy 75 This final book by acclaimed anthropologist Robert F. Murphy is considered a classic in the field of disability studies. Murphy details his immersion in the world of disability as an inoperable spinal tumor progressively limited his physical capacities over a fourteen-year period. His memoir focuses on the sociology and anthropology of illness and disability.

A...... Body, Undone: Living On after Great Pain (2016) by Christina Crosby 79 Christina Crosby, a professor of English and feminist, gender, and sexuality studies, wrote this memoir some ten years after a cycling accident left her with quadriplegia. The book relates her life experience from childhood to the present, weaving an account, informed by gender and sexuality theory, of how the body shapes human identities and existence.

...... Born on a Blue Day: A Memoir of Asperger’s and an Extraordinary Mind (2006) by Daniel Tammet 83 Born on a Blue Day is a memoir about Daniel Tammet’s autism, synesthesia, and savant syndrome. Published when he was twenty-seven years old, the memoir focuses on his difficult early life and his later happiness with his partner, Neil Mitchell.

...... Brain on Fire: My Month of Madness (2012) by Susannah Cahalan 88 Journalist Susannah Cahalan recounts her experience with NMDA-receptor encephalitis, an only recently identified autoimmune disorder that causes inflammation of the brain, affecting the part of the brain that controls thoughts, moods, and movements. No one seems able to provide a diagnosis of her condition despite her continued deterioration and what she experiences as a descent into madness.

...... A Brain Wider than the Sky: A Migraine Diary (2009) by Andrew Levy 91 In his memoir, Andrew Levy documents his experiences with frequent migraines. He discusses a four-month period in which he had migraines daily, surveys historical and medical accounts of headaches, and describes the toll that an invisible illness can take on a person’s public and private life.

...... Breath: A Lifetime in the Rhythm of an Iron Lung (2003) by Martha Mason 96 Martha Mason’s Breath is a memoir that describes her experience of surviving polio and living for over half a century in an iron lung. The book is notable for its observations about medical care, community support, and the potential for technology to provide access for people with disabilities.

...... The Broken Cord: A Family’s Ongoing Struggle with Fetal Alcohol Syndrome (1989) 100 by Michael Dorris The Broken Cord blends Native American author Michael Dorris’s account of his adopted son’s struggles with fetal alcohol syndrome (FAS) with the author’s own investigative research about the effects of alcohol use during pregnancy. Dorris’s book contributed to the increased concern regarding FAS and other fetal alcohol spectrum disorders in the late twentieth century.

...... Bug: Deaf Identity and Internal Revolution (2007) by Christopher Jon Heuer 105 Christopher Jon Heuer’s collection of essays and poetry challenges expectations and perceived limitations placed on Deaf people. Heuer seeks to awaken his audience’s social consciousness by

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playing the role of a “bug,” a seemingly insignificant “pest” who nonetheless “believes it’s his destiny to start an infestation.” The book ultimately adopts a humorous and entertaining position in turning the tropes of Deafness upside down.

...... The Cancer Journals (1980) by Audre Lorde 110 Poet Audre Lorde’s memoir chronicles her experience, as a black feminist and lesbian, with breast cancer and radical mastectomy. Lorde rejects the “path of prosthesis, of silence and invisibility”; while she acknowledges that every woman has the right to make her own choices about her body, she objects to prosthesis as the norm.

...... The Center Cannot Hold: My Journey through Madness (2007) by Elyn R. Saks 115 Author Elyn R. Saks’s narration of her life with chronic schizophrenia and psychosis is one of the few memoirs written by a person diagnosed with schizophrenia. The memoir covers a period from her first psychotic episode at approximately age eight and includes episodes and treatments during her undergraduate work at Vanderbilt, graduate work at Oxford, and law school at Yale.

...... A Child of Sanitariums: A Memoir of Tuberculosis Survival and Lifelong Disability (2010) 120 by Gloria Paris Gloria Paris’s memoir details her childhood experience of being treated for skeletal tuberculosis, during which time she was often immobilized and institutionalized. The book also describes her life after being discharged, pursuing a career as a microbiologist and raising three children.

City...... of Corpses (1948) by Yoko Ota 124 City of Corpses is a memoir by Yoko Ota about surviving the atomic bombing of Hiroshima, Japan, in August 1945. The book provides an account of what she witnessed in the four months after the attack, including information about radiation sickness, the psychological states of the victims, and the political situation in Japan.

Codeine...... Diary: A Memoir (1998) by Tom Andrews 128 In his memoir, poet Tom Andrews considers the mythology of illness from his perspective as a hemophiliac and through his relationship to his brother, who died from complications related to kidney disease.

Confessions...... of an English Opium-Eater: Being an Extract from the Life of a Scholar (1821) 133 by Thomas De Quincey Thomas De Quincey’s work is among the earliest first-person accounts of addiction, relating his forays into memory, philosophical speculation, and visionary experience with the aid of opium. The book is notable as a highly stylized and influential literary exploration of the pleasures and pains of the drug.

Count...... Us In: Growing Up with Down Syndrome (1994) by Jason Kingsley and Mitchell Levitz 138 Count Us In compiles a series of conversations between Jason Kingsley and Mitchell Levitz, both of whom have Down syndrome, about their experiences living with the disorder. The work seeks to challenge the stigmas regarding the capabilities of people with intellectual disabilities.

The...... Cry of the Gull (1994) by Emmanuelle Laborit 142 French actress Emmanuelle Laborit’s autobiography The Cry of the Gull describes the importance of sign language to her development of a sense of self, her relationship with her family, and her career.

Darkness...... Visible: A Memoir of Madness (1990) by William Styron 146 Pulitzer Prize–winning novelist William Styron describes his battle with severe depression, his suicidal ideation and behaviors, and his eventual recovery. Styron also confronts cultural taboos regarding suicide and the assumptions held by loss survivors. His reputation as an acclaimed author positioned him as an influential spokesperson for others with depression and contributed to the destigmatization, understanding, and acceptance of mental illness. x DISABILITY EXPERIENCES TABLE OF CONTENTS

The...... Days: His Autobiography in Three Parts (1926–1955) by Taha Hussein 150 The Days is a three-part autobiography by influential Egyptian writer Taha Hussein in which he discusses his experiences with blindness as a young boy, the failures of higher education in Egypt and France to be inclusive to people with disabilities, and his participation in the modernist movement in Egypt.

...... Deaf in Delhi: A Memoir (2006) by Madan Vasishta 155 Madan Vasishta’s memoir describes his childhood in a small town in India after becoming deaf due to typhoid fever and mumps. He discusses the evolution of his perception of disability as he moved to Delhi and became involved in the deaf community, followed by his eventual move to the United States to attend Gallaudet University.

...... The Deaf Mute Howls (1930) by Albert Ballin 160 The Deaf Mute Howls is Albert Ballin’s discussion of deafness, including his own that began when he was three years old, and his advocacy for the use of sign language rather than lipreading or speech in deaf education. His memoir contains fictional elements, in order to provide a composite portrait of the average deaf student of his era.

...... Deafness: A Personal Account (1969) by David Wright 164 Deafness is a memoir by the poet David Wright about his life after becoming deaf at age seven. Wright also provides a history of deaf education, in which he expresses his support for oralism (lipreading and spoken language–based communication) rather than manualism (sign language).

...... Deep in the Brain: Living with Parkinson’s Disease (2006) by Helmut Dubiel 168 Helmut Dubiel’s memoir Deep in the Brain addresses the author’s changing sense of self as a result of his Parkinson’s disease and his treatment through deep brain stimulation.

...... Deformity: An Essay (1754) by William Hay 172 A self-described hunchback with a pock-scarred face, William Hay wrote this essay as a repudiation of Francis Bacon’s 1625 essay “Of Deformity,” in which Bacon argues that deformity can shape the behavior of affected individuals—for good or for ill. Hay argues that deformity is both advantageous to society and in some ways makes a person actually superior to able-bodied counterparts.

...... Diary Drawings: Mental Illness and Me (2010) by Bobby Baker 177 This collection of 158 drawings, along with three essays and other supplementary text, chronicles Bobby Baker’s daily life as she struggled with a period of severe mental breakdown and the shortcomings of her mental health treatment. The drawings were originally part of a touring exhibition.

...... The Diary of Alice James (Late 1800s) by Alice James 182 Alice James, sister of novelist Henry James and philosopher/psychologist William James, was diagnosed with neurasthenia, a contemporary term for depression. A detailed account of her experience of being ill and disabled as a Victorian woman, James’s diary was published posthumously.

...... The Diary of Frida Kahlo: An Intimate Self-Portrait (1995) by Frida Kahlo 187 The Diary of Frida Kahlo was written and illustrated by the Mexican artist during the last decade of her life and published posthumously. Prominent among the various issues covered in the diary are Kahlo’s experiences with chronic pain and disability due to polio, scoliosis, and the debilitating injuries sustained in a bus accident.

...... Divided Minds: Twin Sisters and Their Journey through Schizophrenia (2005) by Pamela Spiro 191 Wagner and Carolyn S. Spiro Divided Minds, by identical twins Pamela Spiro Wagner and Carolyn S. Spiro, is an account of Pamela’s schizophrenia and how it affected both sisters over the course of their lives. The authors

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also touch on the evolution of medical treatments for mental health issues, public perceptions of schizophrenia, and the importance of self-representation for people with disabilities.

The...... Diving Bell and the Butterfly: A Memoir of Life in Death (1997) by Jean-Dominique Bauby 195 This memoir is an account by Jean-Dominique Bauby of having locked-in syndrome after suffering a stroke. Bauby, who was editor-in-chief at Elle magazine, was left with near-total paralysis and unable to speak or write—but his interior life remained vibrant; he dictated the book letter-by-letter to a transcriber by blinking his left eye.

Don...... ’t Call Me Inspirational: A Disabled Feminist Talks Back (2013) by Harilyn Rousso 199 In Don’t Call Me Inspirational, Harilyn Rousso reflects on her evolving understanding and acceptance of herself as a woman with cerebral palsy. Among the many concerns Rousso addresses are disability rights, sexuality, and the importance of an intersectional understanding of oppression.

Double...... Take: A Memoir (2009) by Kevin Michael Connolly 203 Double Take is a memoir by Kevin Michael Connolly, a photographer and athlete who was born without legs. He discusses how people react to his disability and his frustration with the limitations of contemporary prosthetics.

Dry:...... A Memoir (2003) by Augusten Burroughs 207 Augusten Burroughs followed up his successful 2002 childhood memoir, Running with Scissors, with this adaptation of ten years’ worth of journals he kept while recovering from alcoholism.

Elegy...... for Iris (1999) by John Bayley 211 Elegy for Iris is a structurally and thematically complex memoir about John Bayley’s final years with his wife, Iris Murdoch, after she was diagnosed with Alzheimer’s disease and he served as her primary caregiver.

Emergence:...... Labeled Autistic (1986) by Temple Grandin 216 The title Emergence refers to author Temple Grandin’s “emergence” from a childhood that was largely defined by her inability to communicate with others. Throughout her book, Grandin strives to account for the experience of autism, disproving claims that autists are indifferent to social relations.

Everything...... Happens for a Reason: And Other Lies I’ve Loved (2018) by Kate Bowler 221 Everything Happens for a Reason is a memoir about Kate Bowler’s late-stage colon cancer. Bowler situates her story of faith, doubt, and illness in relation to the American prosperity gospel, a faith tradition about which she is an acknowledged authority.

Exile...... and Pride: Disability, Queerness, and Liberation (1999) by Eli Clare 225 In the essay collection Exile and Pride, activist and author Eli Clare explores not only his experiences as a queer person living with cerebral palsy but also political issues concerning the disabled community.

Exploding...... into Life (1986) by Dorothea Lynch and Eugene Richards 230 Dorothea Lynch’s memoir of her battle with breast cancer is a collection of her diary entries augmented with photographs taken by her partner, Eugene Richards, which often portray the stark realities of cancer and cancer treatment. The book was published three years after Lynch’s death.

Fading...... Scars: My Queer Disability History (2015) by Corbett Joan OToole 234 Fading Scars is an essay collection by activist and writer Corbett Joan OToole about her forty-year engagement with disability issues. The book is noted for its documentation of the disability rights movement and its intersectional approach. xii DISABILITY EXPERIENCES TABLE OF CONTENTS

Falling...... into Life: Essays (1991) by Leonard Kriegel 238 Leonard Kriegel’s collection of autobiographical essays is a follow-up to his earlier memoir, which chronicles his experience with polio and rehabilitation. This essay collection focuses on his difficulty in dealing with the rage he feels over being (what he terms) a “cripple.”

...... Fat Girl: A True Story (2005) by Judith Moore 242 Fat Girl is a confessional memoir by Judith Moore that describes her feelings of self-loathing resulting from the social stigma associated with being overweight.

...... The Flock: The Autobiography of a Multiple Personality (1991) by Joan Frances Casey, with Lynn 245 Wilson The Flock presents the first-person account of Joan Frances Casey’s treatment for dissociative identity disorder, in which a person’s identity is fragmented into two or more personality states. The case notes of her therapist, Lynn Wilson, are interwoven with Casey’s story, which allows the reader to encounter Casey’s experience of trauma and mental illness as well as the perspective of a health-care professional.

Fortunate...... Son: The Autobiography of Lewis B. Puller, Jr. (1991) by Lewis B. Puller, Jr. 249 Fortunate Son is a Pulitzer Prize–winning autobiography by Lewis B. Puller, Jr., in which he details his recovery after losing both of his legs and portions of his hands in a land mine explosion during the Vietnam War.

Fun...... Home: A Family Tragicomic (2006) by Alison Bechdel 254 Alison Bechdel’s Fun Home: A Family Tragicomic is a graphic memoir that addresses the author’s obsessive-compulsive disorder (OCD), her emerging sexuality, and the impact of her father’s death on her life. Bechdel is also known for her long-running comic Dykes to Watch Out For, and for being the namesake of the Bechdel Test, which assesses the portrayal of women in a text.

Gaby...... Brimmer: An Autobiography in Three Voices (1979) by Gabriela Brimmer, with Elena 258 Poniatowska This collaborative autobiography details the first thirty years of Mexican-Jewish disability rights activist Gabriela Brimmer’s experiences living with cerebral palsy in Mexico as told from the perspective of Brimmer, her mother, and her caregiver (the “three voices”) prior to Mexico’s disability rights movement.

“...... The GENIUS, Number II” (1761) by George Colman the Elder 263 “The GENIUS, Number II” is a humorous essay written by George Colman the Elder to promote his and actor David Garrick’s periodical the St. James’s Chronicle. It details the many disadvantages of what Colman calls his “littleness,” lamenting in particular the humiliations he suffers as the result of the bigoted opinions of his friends and acquaintances.

Geography...... of the Heart: A Memoir (1996) by Fenton Johnson 268 Fenton Johnson’s memoir relates his experiences with his partner, Larry Rose, who was diagnosed with HIV and later died from complications of AIDS. Set during the height of the AIDS epidemic, Johnson’s account explores the personal implications of HIV/AIDS as well as the stigma and misconceptions associated with the disease and its largest affected population, gay and bisexual men.

The...... Girl from Aleppo: Nujeen’s Escape from War to Freedom (2016) by Nujeen Mustafa, with 272 Christina Lamb The Girl from Aleppo is the story of a sixteen-year-old girl with cerebral palsy who flees civil war in Syria. Although she is confined to a wheelchair, Nujeen Mustafa and her sister journey over a period of sixteen months until they find refuge in Germany.

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Girl...... in Need of a Tourniquet: Memoir of a Borderline Personality (2010) by Merri Lisa Johnson 277 Merri Lisa Johnson’s Girl in Need of a Tourniquet explores the effect of borderline personality disorder (BPD) on the author’s life and interpersonal relationships. The title refers to Johnson’s belief that BPD is causing her to “emotionally bleed to death,” leading to her need for “a proverbial tourniquet to prevent her from losing touch with reality.”

...... Girl, Interrupted (1993) by Susanna Kaysen 281 Girl, Interrupted details Susanna Kaysen’s experiences in the late 1960s while institutionalized for eighteen months following her diagnosis of borderline personality disorder. This best-selling memoir was adapted into a feature film in 1999.

“...... Grove of the Infirm” and “Wonder at the Works of God” (1470s) by Teresa de Cartagena 286 Teresa de Cartagena’s treatises “Grove of the Infirm” and “Wonder at the Works of God” are among the earliest examples of disability life writing by a woman. They describe the spiritual advantages of Teresa’s deafness and address the backlash against her writings in medieval Spain.

Happy...... Old Year: An Autobiography (1982) by Marcelo Rubens Paiva 291 Happy Old Year is a memoir by author Marcelo Rubens Paiva in which he recounts losing the use of his hands and legs after a diving accident in 1979, during a time when Brazil was ruled by a brutal military dictatorship responsible for the abduction and murder of his father for political dissension.

A...... Healing Family (1995) by KenzaburōŌe 295 This collection of short autobiographical essays by novelist and Nobel laureate KenzaburōŌe describes his relationship with his son Hikari, who has several intellectual disabilities and who learned to express himself through musical composition.

Heart...... Berries: A Memoir (2018) by Terese Marie Mailhot 299 Heart Berries is a memoir about mental illness by Terese Marie Mailhot, a First Nations Canadian. The book is noteworthy for Mailhot’s reflections on the cumulative mental health effect of multigenerational oppression on Indigenous people.

Heaven...... ’s Coast: A Memoir (1997) by Mark Doty 303 Heaven’s Coast is a witness memoir by poet Mark Doty about the death of his partner from AIDS. The book functions as an AIDS journal, chronicling the toll of the disease and Doty’s mourning process.

The...... History of the Carolina Twins: Told in “Their Own Peculiar Way” by “One of Them” 307 (1866–1869?) by Millie McKoy and Christine McKoy The History of the Carolina Twins is an undated pamphlet, probably composed and published between 1866 and 1869, that describes the lives of Millie and Christine McKoy, African American conjoined twins who were born into slavery. The pamphlet provides insight into the ways in which the twins were exploited for profit and is notable for their testimony on wishing not to be separated.

Home...... Bound: Growing Up with a Disability in America (2004) by Cass Irvin 311 Cass Irvin recounts her life with quadriplegia resulting from polio, her rehabilitation at the Georgia Warm Springs Foundation, and her eventual career as an outspoken activist and author. Her memoir exemplifies the notion inherited from second-wave feminists that the personal is political.

How...... I Became a Human Being: A Disabled Man’s Quest for Independence (2003) by Mark O’Brien, 316 with Gillian Kendall Mark O’Brien’s memoir chronicles his experiences living with polio-induced paralysis from age six. The memoir narrates his quest to become a “human being” from his early years in which he had very little options in life, to eventually taking control of his life, including earning a bachelor’s degree and publishing poetry and journalism. xiv DISABILITY EXPERIENCES TABLE OF CONTENTS

I...... Knock at the Door: Swift Glances Back at Things That Made Me (1939) by Sean O’Casey 320 The first volume of Irish playwright Sean O’Casey’s six-volume autobiography, I Knock at the Door describes the author’s experience as a poor Irish child with a painful disease of the eyes, likely trachoma. The volume strongly criticizes the inequalities brought about by capitalism and also describes how ableist medical, religious, and educational authorities further contributed to his sense of alienation.

...... I Raise My Eyes to Say Yes (1989) by Ruth Sienkiewicz-Mercer and Steven B. Kaplan 324 Ruth Sienkiewicz-Mercer’s memoir describes her life with cerebral palsy, detailing the trauma she experienced at Belchertown State School, her eventual release from that institution, and her marriage to another former patient there. The book was written with the help of Steven B. Kaplan, who recorded it by means of a complicated system involving custom word boards and a series of yes/no questions that Sienkiewicz-Mercer answered via eye movements.

...... In Our Hearts We Were Giants: The Remarkable Story of the Lilliput Troupe—A Dwarf Family’s 329 Survival of the Holocaust (2003) by Yehuda Koren and Eilat Negev This work recounts the lives of the Ovitzes, a Jewish family in which seven of ten siblings were born with a form of dwarfism. They formed a successful European vaudeville company early in the twentieth century, but in 1944 the Ovitzes were marked by Adolf Hitler and the Nazis for extermination as physical undesirables and sent to a death camp in Poland, where they became subject to medical investigations.

...... In Praise of Weakness (1999) by Alexandre Jollien 333 In Praise of Weakness is a memoir by the philosopher Alexandre Jollien in which he recounts growing up in a Swiss residential center for children with cerebral palsy. Jollien frames his reflections, informed by Buddhism, in the form of a fictional dialogue with Socrates.

...... In the Body of the World: A Memoir of Cancer and Connection (2013) by Eve Ensler 338 Playwright and activist Eve Ensler (best known for the play The Vagina Monologues, 1996) describes parallels and differences between her emotional experience and treatment options after being diagnosed with uterine cancer and that of Congolese women who had suffered rape and other forms of sexual violence and were treated in a sanctuary called City of Joy, which Ensler helped to establish.

In...... the Face of Death (1984) by Peter Noll 342 In the Face of Death is a memoir by Swiss jurist and law professor Peter Noll about his final months after deciding to forgo treatment for terminal bladder cancer.

In...... the Jaws of the Black Dogs: A Memoir of Depression (1995) by John Bentley Mays 346 In the Jaws of the Black Dogs, by John Bentley Mays, is an account of the author’s experiences with chronic depression, from his first feelings of isolation as a child to his subsequent institutionalization, psychotherapy, and drug therapies.

In...... the Land of Pain (1897) by Alphonse Daudet 350 Like many other noted writers in nineteenth-century France (such as Flaubert, Baudelaire, Rimbaud, Maupassant, and others), Alphonse Daudet suffered from syphilis, resulting in chronic nerve pain. This work is a collection of notes the writer compiled near the end of his life.

In...... the Shadow of Memory (2003) by Floyd Skloot 354 In the Shadow of Memory is a series of seventeen personal essays by Floyd Skloot in which he discusses his loss of motor skills and memory systems after contracting viral encephalitis. He considers the ways in which abuse and genetics affect memory and attempts to provide a counternarrative for negative social perceptions of memory loss and brain damage.

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An...... Iranian Odyssey (1991) by Gohar Kordi 359 In a society where being female was a disadvantage and women were treated as burdens, women with disabilities in Iran faced increased discrimination and were deprived of rudimentary needs and rights. An Iranian Odyssey describes Gohar Kordi’s experiences growing up blind and poor in Iran before becoming the first blind woman to attend Tehran University.

...... It’s Not Yet Dark: A Memoir (2014) by Simon Fitzmaurice 363 Filmmaker Simon Fitzmaurice’s memoir It’s Not Yet Dark, written using eye-gaze technology, describes his experience of being diagnosed with amyotrophic lateral sclerosis (ALS) at age thirty- four. The book includes discussion of the author’s decision to extend his life by remaining on a ventilator.

...... I’ve Heard the Vultures Singing: Field Notes on Poetry, Illness, and Nature (2007) by Lucia Perillo 366 Poet and former park ranger Lucia Perillo’s memoir explores the new ways she found to connect with nature once her multiple sclerosis (MS) curtailed many of her activities. The memoir also exposes the realities of life with MS and the complexities of gender and disability.

...... The Language of Me (2004) by Musa E. Zulu 370 The Language of Me is the story of how Musa E. Zulu overcame the challenges of paraplegia caused by an automobile accident and became a successful author and motivational speaker in post-apartheid South Africa.

...... Learning Sickness: A Year with Crohn’s Disease (2004) by James M. Lang 374 In James M. Lang’s memoir Learning Sickness, he discusses a year during which he experienced a severe flare-up of Crohn’s disease. He considers the effects of the disease on his personal, professional, and social lives and how illness transformed his self-perception.

...... Liar: A Memoir (2016) by Rob Roberge 377 Liar is a memoir by writer and musician Rob Roberge describing his life with ultradian (ultra- rapid cycling) bipolar disorder and his efforts to come to terms with the consequences of years of self-medication with drugs and alcohol.

Life...... as We Know It: A Father, a Family, and an Exceptional Child (1996) and 381 Life as Jamie Knows It: An Exceptional Child Grows Up (2016) by Michael Bérubé In Life as We Know It, Michael Bérubé describes his experiences during the first years after the birth of his son Jamie, who was born with Down syndrome. Bérubé reflects on Jamie’s early physical setbacks and the therapies that helped him. Life as Jamie Knows It, written twenty years later, tells of Jamie’s experiences as an adolescent and young man, interacting with people, attending school, and seeking independence.

...... Life Prints: A Memoir of Healing and Discovery (2000) by Mary Grimley Mason 385 When she was six, Mary Grimley was the nation’sfirst“poster child,” reluctantly posing for publicity shots with President Franklin D. Roosevelt at the Warm Springs Institute for Rehabilitation in Georgia. Her memoir reveals her real-life struggles with the intersectionality of being disabled (from polio) and being a woman.

...... Lighter than My Shadow (2013) by Katie Green 389 Lighter than My Shadow is Katie Green’s graphic memoir about her struggle with eating disorders. Green narrates her anorexia and bulimia as an intensified response to a combination of factors: adolescent angst, school pressure, parental stress, confusion about puberty, and sexual abuse by a therapist.

Listening:...... Ways of Hearing in a Silent World (1994) by Hannah Merker 392 Hannah Merker was a director of library services for the visually and physically handicapped at the Library of Congress when, as a result of a skiing accident, she herself lost her hearing. Listening xvi DISABILITY EXPERIENCES TABLE OF CONTENTS

discusses the experience of losing her hearing suddenly and “discovering the world anew,” and the nature of sound and listening.

...... Lit: A Memoir (2009) by Mary Karr 396 Mary Karr’s third memoir continues where the second, Cherry, left off, discussing her adulthood: alcoholism; writing career; marriage, motherhood, and divorce; and recovery.

The...... Little Locksmith: A Memoir (1943) by Katharine Butler Hathaway 399 Katharine Butler Hathaway was an English writer with spinal tuberculosis, which resulted in a physical disfigurement in her upper back. Her memoir is widely regarded as an originator of the modern disability memoir.

Little...... People: Learning to See the World through My Daughter’s Eyes (2003) by Dan Kennedy 403 Little People, by journalist Dan Kennedy, is a memoir about being a parent of average stature raising a daughter with dwarfism. His “quest to find meaning and purpose in [her] having a life- altering genetic difference” prompts reflections on dwarfism and its representation in culture, among other issues.

A...... Little Pregnant: Our Memoir of Fertility, Infertility, and a Marriage (1999) by Linda Carbone and 407 Ed Decker A Little Pregnant is a coauthored memoir about the effects of infertility on a husband and wife’s relationship and their respective senses of self. The book offers a deeply personal perspective on the medical model of disability as it relates to reproduction.

Long...... Time, No See (2003) by Beth Finke 411 Chronicling Beth Finke’s experience growing up with Type I diabetes diagnosed at age seven, losing her vision in her twenties, and parenting a child with developmental disabilities, Long Time, No See provides an honest account of her facing total vision loss, employment discrimination, a difficult postpartum period, her husband’s infidelity, and pursuing her dream of being a writer.

Look...... Me in the Eye: My Life with Asperger’s (2007) by John Elder Robison 415 John Elder Robison’s memoir focuses on his experience with an autism spectrum disorder at a time when very little about autism was understood by the medical community and the condition was not familiar to the general public. The narrative chronicles his struggle through social difficulties with his peers, compounded by a turbulent home life with an alcoholic father and a mentally ill mother.

The...... Loony-Bin Trip (1990) by Kate Millett 419 The Loony-Bin Trip is author Kate Millett’s protest against involuntary psychiatric treatment for mental illness. She believes that the medical model of mental illness is a fiction, and that mental illness is treated as a crime. Her memoir recounts her experience when she stopped taking lithium to prove herself “innocent” of the “crime” of manic depression.

Losing...... My Mind: An Intimate Look at Life with Alzheimer’s (2002) by Thomas DeBaggio 423 Losing My Mind is a memoir by Thomas DeBaggio in which he chronicles the progression of his dementia and his changing sense of self after being diagnosed with early-onset Alzheimer’s disease.

Love...... Like Salt: A Memoir (2016) by Helen Stevenson 427 Helen Stevenson’s Love Like Salt is her account of raising a daughter who has cystic fibrosis (CF), focusing on the effect of her daughter’s illness on her and her family.

...... Lucky Man: A Memoir (2002) by Michael J. Fox 431 In his memoir Lucky Man actor Michael J. Fox recounts the progression of his Parkinson’s disease during the seven-year period from diagnosis through the public disclosure of his illness. Fox discusses the increasing severity of his symptoms, their effect on his work as an actor and personal relationships, and his eventual acceptance of his condition.

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Lying:...... A Metaphorical Memoir (2000) by Lauren Slater 435 Lauren Slater’s memoir challenges the conventions of the genre by undermining her own account of what might be neurological or psychiatric illness.

Volume 2

Madonna...... Swan: A Lakota Woman’s Story as Told through Mark St. Pierre (1991) by Mark St. Pierre 439 Mark St. Pierre details Madonna Swan’s early childhood on the Cheyenne River Reservation and her experience being sent to a boarding school for Native American children, where she contracted tuberculosis. Swan recalls her time spent in sanatoriums receiving treatment, the responses of both her family and their larger Lakota community to her disease, and her eventual recovery.

...... The Man of Jasmine (1971) by Unica Zürn 444 The Man of Jasmine is a semiautobiographical account of mental illness by German surrealist artist and author Unica Zürn. Based on Zürn’s experiences in German and French mental institutions, the book juxtaposes descriptions of depression-induced fantasies and hallucinations with anagrammatic poetry.

...... Man to Man: Surviving Prostate Cancer (1996) by Michael Korda 449 Man to Man is a memoir by editor and writer Michael Korda, who was diagnosed with prostate cancer and underwent radical prostatectomy surgery.

Mapping...... Fate: A Memoir of Family, Risk, and Genetic Research (1995) by Alice Wexler 453 Alice Wexler’s memoir is a narrative account of how the author’s family came to terms with the risk of inheriting the genetic disorder Huntington’s disease following her mother’s diagnosis. Wexler, a history professor, also provides an overview of the medical research related to the disease.

Marbles:...... Mania, Depression, Michelangelo, & Me (2012) by Ellen Forney 458 Marbles is Ellen Forney’s account, rendered in words and drawings, of her experience with bipolar disorder, her therapy, and her acceptance of her condition. Forney’s book is the first major graphic memoir about the disorder by a bipolar author.

Matthew...... ’s Enigma: A Father’s Portrait of His Autistic Son (2003) by Matei Calinescu 462 Matthew’s Enigma by literary scholar Matei Calinescu is a meditation on his son Matthew’s life with autism, his family’s experiences learning about the condition, and the ways in which his relationship with Matthew informed his understanding of reading and language.

The...... Me in the Mirror (1994) by Connie Panzarino 466 Connie Panzarino’s memoir details her life with a rare neuromuscular disease that leaves her with limited and decreasing mobility. Set against the backdrop of emerging new left, anti-war, feminist, gay liberation, and disability activism of the post–World War II era, the memoir spans Panzarino’s early years leading to her diagnosis at the age of four, through adulthood.

Mean...... Little deaf Queer: A Memoir (2009) by Terry Galloway 470 Described as profoundly deaf in a hearing world, female in a patriarchal world, queer in a straight world, liberal in a conservative state, Terry Galloway recounts her life from the prenatal incident that left her deaf by the age of nine until the age of fifty-eight when she began contemplating surgery to reverse her hearing loss. Her memoir also serves as a critique of the institutions— medical, educational, religious, and artistic—that exclude and privilege.

Meaning...... of a Disability: The Lived Experience of Paralysis (1999) by Albert B. Robillard 474 Meaning of a Disability is an account by ethnomethodologist Albert B. Robillard of his paralysis due to the neurodegenerative disease amyotrophic lateral sclerosis (ALS) and his subsequent work to develop new methods of communication. xviii DISABILITY EXPERIENCES TABLE OF CONTENTS

Meditations...... from a Movable Chair: Essays (1998) by Andre Dubus 478 Meditations from a Movable Chair by Andre Dubus is a collection of essays that reflect on the author’s journey toward physical and emotional healing following an accident that caused him to lose lower-body mobility. Dubus contemplates his outlook on domestic life, spirituality, and personal autonomy before and after the accident.

Memoir...... of a Debulked Woman: Enduring Ovarian Cancer (2012) by Susan Gubar 483 Memoir of a Debulked Woman documents feminist scholar Susan Gubar’s diagnosis of terminal ovarian cancer and the new body-consciousness she developed after undergoing chemotherapy and invasive surgical procedures. Gubar’s experience prompts a wide-ranging historical examination of the misuse of women’s bodies in the field of medicine and the misrepresentation of women’s illness in culture.

Memoir...... of the Early Life of William Cowper, Esq. (1816) by William Cowper 487 Memoir of the Early Life of William Cowper, Esq., is a personal account of William Cowper’s religious conversion in the aftermath of his mental crisis and subsequent suicide attempts in 1763.

Memoirs...... of Mrs. Mary Robinson (1801) by Mary Robinson 492 Mary Robinson narrates her life as a celebrated English actress and socialite who contracted lower limb paralysis from a mysterious illness and went on to become a prolific writer and a radical feminist polemic. Scholars see the memoir as a significant literary, autobiographical, historical, and cultural document and as an important contribution to the genre of eighteenth-century British women’s life writings, as well as to the field of disability studies.

Memoirs...... of My Nervous Illness (1903) by Daniel Paul Schreber 497 Daniel Paul Schreber, a German judge diagnosed with dementia praecox (now known as schizophrenia), wrote this memoir as a part of his appeal seeking release from an asylum.

Memoirs...... of the Celebrated Dwarf, Joseph Boruwlaski, a Polish Gentleman (1788) 502 by Joseph Boruwlaski This confessional autobiography of Joseph Boruwlaski, a dwarf, is a testimony to the full humanity of small people as they battle the prejudices deeming them freaks, children, inhuman novelties, or animals. It traces Boruwlaski’s journey from court dwarf and princes’ plaything, to leisured aristocrat, to popular spectacle, and finally to contented solid citizen.

Memory...... ’s Last Breath: Field Notes on My Dementia (2017) by Gerda Saunders 507 Memory’s Last Breath is a memoir by Gerda Saunders in which she discusses the impact of her diagnosis of microvascular disease, an early form of dementia, on her personal and professional life.

The...... Mind Tree: A Miraculous Child Breaks the Silence of Autism (2000) by Tito Rajarshi 511 Mukhopadhyay The Mind Tree is a collection of essays and poems in which the author, Tito Rajarshi Mukhopadhyay (assisted by his mother), provides an account of living with severe autism.

Miracle...... Boy Grows Up: How the Disability Rights Revolution Saved My Sanity (2012) by Ben Mattlin 515 Miracle Boy Grows Up is a memoir by Ben Mattlin in which he discusses his life from the age of six months, when he was diagnosed with spinal muscular atrophy, until 2008. His book examines the effects that technology, politics, and social movements have on disabled bodies.

Missing...... Pieces: A Chronicle of Living with a Disability (1982) by Irving Kenneth Zola 519 Irving Kenneth Zola’s Missing Pieces is a genre-bending memoir that integrates sociological analysis with a first-person account of physical disability. The book is recognized for its exploration of independent living, its frank discussions of sexuality, and its evaluation of what it means to claim a disabled identity.

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Moonrise:...... One Family, Genetic Identity, and Muscular Dystrophy (2003) by Penny Wolfson 523 In Moonrise, Penny Wolfson describes how her life is changed by having a son with Duchenne muscular dystrophy, a condition that causes the body’s muscles to break down and leads to early death. The memoir addresses concerns about access to health care and education, as well as those surrounding the question of genetic testing.

Mortal...... Embrace: Living with AIDS (1987) by Emmanuel Dreuilhe 527 Emmanuel Dreuilhe, an Egyptian-born French writer, chronicles the early years of the HIV/AIDS epidemic while working in the United States as a translator and correspondent. His work covers his own illness, as well as that of his partner.

Moving...... Violations: War Zones, Wheelchairs, and Declarations of Independence (1995) 532 by John Hockenberry Moving Violations is a memoir by paraplegic journalist John Hockenberry. At age nineteen he suffered a T4-6 spinal cord injury in a car crash, which left him partially paralyzed and without sensation from his chest down. Eventually Hockenberry became a foreign correspondent for National Public Radio and a spokesperson for people with disabilities.

My...... Age of Anxiety: Fear, Hope, Dread, and the Search for Peace of Mind (2013) by Scott Stossel 537 My Age of Anxiety is a memoir by journalist Scott Stossel, who has experienced severe anxiety since early childhood. Stossel examines the symptoms and various treatments for anxiety disorder and the social stigmas associated with mental illness.

My...... Left Foot (1954) by Christy Brown 541 Little was known about cerebral palsy in Ireland when Christy Brown was diagnosed as a child. He affirmed his mother’s belief that—despite popular but uninformed opinion—he was not a “mental defective” when he began to use his left foot, the only body part he could fully control, to write. His work recounts his early life and the beginning of his career in painting.

My...... Life in My Hands (2005) by Alison Lapper, with Guy Feldman 545 My Life in My Hands describes Alison Lapper’s experiences living without arms and with shortened legs, a disability caused by the congenital condition phocomelia. Lapper’s autobiography discusses her traumatic childhood and adolescence in government institutions and how she later became a mother, a model for a controversial public monument, and an artist in her own right.

My...... Stroke of Insight: A Brain Scientist’s Personal Journey (2006) by Jill Bolte Taylor 549 Neuroanatomist Jill Bolte Taylor recounts her stroke and eight-year recovery. She notes that rather than panicking, she immediately appreciated the experience as a form of intimate firsthand research: “I kept thinking, Wow, how many scientists have the opportunity to study their own brain function and mental deterioration from the inside out?”

A...... Nearly Normal Life: A Memoir (1999) by Charles L. Mee 554 A Nearly Normal Life by Charles Mee combines a popular-historical overview of the twentieth- century polio epidemic in America with the author’s own experience of having the disease. The book also includes Mee’s meditations on masculinity, American culture, and the concept of normality.

No...... One’s Perfect (1998) by Hirotada Ototake 558 The best-selling memoir No One’s Perfect describes the early life of Hirotada Ototake, who was born without arms or legs. Ototake emphasizes the value of family and community support in helping him realize his self-worth. His memoir has been identified as an important work in changing perceptions of disability in Japan. xx DISABILITY EXPERIENCES TABLE OF CONTENTS

Nobody...... Nowhere: The Extraordinary Autobiography of an Austistic (1992) by Donna Williams 563 This best-selling memoir recounts Donna Williams’s search to understand her autism. She begins with her earliest memories of her neurological differences and continues with how she explored her past to better understand herself as an autistic person, rather than a “mad” woman.

...... The Noonday Demon: An Atlas of Depression (2001) by Andrew Solomon 567 In The Noonday Demon Andrew Solomon provides a survey of depression, including details of his personal struggle with the mood disorder, and examines its various dimensions, from medical to cultural.

Not...... All Black Girls Know How to Eat: A Story of Bulimia (2009) by Stephanie Covington Armstrong 571 Not All Black Girls Know How to Eat is an account of the first twenty-seven years of Stephanie Covington Armstrong’s life, tracing the root causes of her anorexia and bulimia and the path that led to her recovery. The first eating disorder memoir by a black American woman, this work examines the factors that discourage women of color from seeking help for disordered eating.

...... Notes on the Flesh (2017) by Shahd Alshammari 575 Shahd Alshammari’s Notes on the Flesh is a collection of semiautobiographical stories that explore the role of gender and disability in Middle Eastern life.

“...... On Personal Defects: Proposals for an Ugly Club” (1711) by Richard Steele 579 “On Personal Defects” is a humorous 1711 essay attributed to Richard Steele. It offers generalized advice about appearances, jokes, and polite society, before printing a joke “letter” about the secret history and proceedings of an Oxford social organization, the Ugly Club.

One...... More Theory about Happiness: A Memoir (2010) by Paul Guest 583 Paul Guest’s memoir One More Theory about Happiness describes his life with quadriplegia after a spinal cord injury sustained when he was twelve. He explains the misguided encouragement from his community that he might someday walk again, as well as his education and the development of his career as a poet.

Out...... of Joint: A Private and Public Story of Arthritis (2005) by Mary Felstiner 587 Historian Mary Felstiner integrates her personal experiences living with rheumatoid arthritis (RA) with her research into the cultural and medical histories of the condition. She addresses each stage of the disease and her relationship with it, and discusses the evolution of public and political views of arthritis and the role of broader social movements in the process.

The...... Outsider: A Journey into My Father’s Struggle with Madness (2000) by Nathaniel Lachenmeyer 591 The Outsider is a memoir by Nathaniel Lachenmeyer in which he attempts to understand his father’s schizophrenia and alcoholism by reconstructing the man’s past. Lachenmeyer examines the social constructs that result in the criminalization and marginalization of people with mental illnesses.

Over...... My Head: A Doctor’s Own Story of Head Injury from the Inside Looking Out (1998) 595 by Claudia L. Osborn Over My Head is Claudia Osborn’s account of sustaining a traumatic brain injury (TBI), experiencing the phenomenon known as loss of self, and coming to terms with the realization that she would not be able to resume her career as a physician.

“...... The Pain Scale” (2005) by Eula Biss 599 Eula Biss’s lyrical and literary essay explores the difficulties associated with communicating the experience of pain. She muses on the nature of temperature scales, whether zero is a number, Christ, Aristotle, the vastness of pain, and Dante’s Inferno, and ultimately affirms the value of literature, history, philosophy, and metaphor to evoke the experience of pain.

DISABILITY EXPERIENCES xxi TABLE OF CONTENTS

Pain...... Woman Takes Your Keys: And Other Essays from a Nervous System (2017) 603 by Sonya Huber Pain Woman Takes Your Keys is a collection of essays and poems about Sonya Huber’s experience with chronic pain resulting from two autoimmune conditions.

Passing...... for Normal: A Memoir of Compulsion (1999) by Amy S. Wilensky 607 Amy S. Wilensky’s memoir is an account of growing up with Tourette syndrome (TS) and obsessive-compulsive disorder (OCD) in the 1970s and 1980s, when those conditions were still rarely diagnosed and widely misunderstood.

Past...... Due: A Story of Disability, Pregnancy and Birth (1990) by Anne Finger 611 Past Due is a memoir about the birth of Anne Finger’s son and how that experience affected her politics, her attitudes toward abortion and polio, and her reaction to the emergence of symptoms of post-polio syndrome.

Planet...... of the Blind: A Memoir (1998) by Stephen Kuusisto 615 American poet and memoirist Stephen Kuusisto writes about his experiences with blindness over the course of four decades. His memoir addresses the nature of perception and how an unsighted individual learns to navigate in a dark world. Kuusisto illustrates how blindness can be conveyed as a philosophical construct by conceptualizing the image of a planet of the blind, a place where “no one needs to be cured.”

Poster...... Child: A Memoir (2007) by Emily Rapp 619 As a child, Emily Rapp had to have part of her left leg amputated because of a congenital deformity. Her memoir covers her time as Wyoming’s 1980 March of Dimes poster child, and her subsequent years navigating school, social life, and relationships, while under the continuous pressure she felt from herself and others to excel without complaint.

Prozac...... Nation: Young and Depressed in America (1994) by Elizabeth Wurtzel 623 Prozac Nation provides Elizabeth Wurtzel’s forthright descriptions of her experience of being chronically depressed. She offers a notable early account of the effects of the drug Prozac as a treatment for depression.

Putting...... Myself in the Picture: A Political, Personal and Photographic Autobiography (1986) 627 by Jo Spence Demonstrating photographer Jo Spence’s commitment to making photography accessible and her belief in its democratizing potential, this photographic autobiography focuses on her childhood, early projects, breast cancer diagnosis, and subsequent treatment and recovery. Throughout the text she interweaves her photography and events from her personal life with the politics of disability and health care.

The...... Question of David: A Disabled Mother’s Journey through Adoption, Family, and Life (1999) 632 by Denise Sherer Jacobson The Question of David is a memoir by Denise Sherer Jacobson about adopting a child at risk for cerebral palsy (CP). Jacobson and her husband both also have CP, and the book describes her struggles against ableism and self-doubt in the process of adopting and raising her son.

Reasonable...... People: A Memoir of Autism and Adoption (2007) by Ralph James Savarese 636 In Reasonable People academic Ralph James Savarese discusses the process by which he and his wife taught their adopted son with autism, DJ, to tell his life’s story through facilitated communication. The work challenges the suggestion that autists are incapable of literacy or attaining meaningful education. xxii DISABILITY EXPERIENCES TABLE OF CONTENTS

Reflections:...... The Life and Writings of a Young Blind Woman in Post-Revolutionary France (1825) 640 by Thérèse-Adèle Husson Written before the invention of Braille, Thérèse-Adèle Husson’s memoir provides insight into the life of a blind Frenchwoman in postrevolutionary provincial France. In her work, she also advocates for education and self-sufficiency for blind people.

...... Refuge: An Unnatural History of Family and Place (1991) by Terry Tempest Williams 644 Terry Tempest Williams blames radioactive fallout from the nearby Nevada Test Site for her mother’s cancer and that of her grandmothers and six aunts. Williams’s ecofeminist memoir interweaves the details of her mother’s struggle with cancer with escalating events related to the devasting overflow of Utah’s Great Salt Lake into the Bear River Migratory Bird Refuge, thereby providing personal testimony of the deep connection between the body and place.

Reversals:...... A Personal Account of Victory over Dyslexia (1979) by Eileen Simpson 649 Reversals is a narrative of Eileen Simpson’s early life and education with undiagnosed dyslexia. The book also describes how she came to be a psychotherapist and writer after her adult diagnosis and how her dyslexia affected her writing processes.

The...... Ride Together: A Brother and Sister’s Memoir of Autism in the Family (2003) by Judy Karasik and 653 Paul Karasik The Ride Together is a graphic memoir by Judy and Paul Karasik of their experiences caring for their autistic brother, David. The book includes alternating text chapters by Judy and comic panels by Paul that offer their perspectives on David’s life and his role as an integral part of the Karasik family.

The...... Secret Life of a Black Aspie: A Memoir (2017) by Anand Prahlad 657 Anand Prahlad’s memoir recounts his experiences as an African American man living with Asperger’s syndrome in the aftermath of the US civil rights movement. The memoir begins with his childhood in the South and continues through his adulthood in a spiritual commune and in academic settings.

Self-Consciousness...... (1989) by John Updike 661 Self-Consciousness is a collection of autobiographical essays by John Updike, a major American writer. The author’s stuttering is the sole subject of one of the essays, and he connects this condition to other elements of his life story throughout the book, particularly regarding his self- perception and his thoughts on the limits and possibilities of communication.

Seven...... Wheelchairs: A Life beyond Polio (2008) by Gary Presley 666 Paralyzed after contracting polio at age seventeen, Gary Presley recounts his long journey from confusion, bitterness, depression, and rage because of his diminished life, to a greater acceptance of his disability and value as an individual, lover, husband, and father. A central theme becomes the role wheelchairs played in lessening his sense of dependence.

Shadow...... and Sunshine (1906) by Eliza Suggs 670 Shadow and Sunshine is a volume of autobiography and poetry by Eliza Suggs, an African American woman who had rickets as a child, and, as a result, remained tiny in adulthood with brittle bones that left her unable to walk.

The...... Shaking Woman: or, A History of My Nerves (2010) by Siri Hustvedt 674 The Shaking Woman, by novelist and essayist Siri Hustvedt, is a memoir about coming to terms with a mysterious condition characterized by fits of uncontrollable shaking. She discusses the attacks in relation to her personal history, her experiences seeking treatment, and her attempts to find answers via multidisciplinary research.

DISABILITY EXPERIENCES xxiii TABLE OF CONTENTS

The...... Short Bus: A Journey beyond Normal (2007) by Jonathan Mooney 679 Jonathan Mooney struggled as a student due to severe dyslexia, attention deficit hyperactivity disorder (ADHD), and anxiety. The Short Bus chronicles his social and emotional travels throughout the United States in an old “short bus,” searching for encounters with a wide variety of people classified as disabled or perceived as different from the norm.

Sick:...... A Memoir (2018) by Porochista Khakpour 684 Sick is Porochista Khakpour’s account of the physical and psychological difficulties of living with chronic Lyme disease and the roles that race, gender, and class play in America’s health-care system.

Sight...... Unseen (1999) by Georgina Kleege 689 Sight Unseen is an autobiographical and theoretical work by Georgina Kleege. In it she draws on her experiences as someone who is legally blind and provides examples from art and science to dispel cultural misconceptions about blindness.

Smalls...... Acts of Disappearance: Essays on Hunger (2015) by Fiona Wright 693 Small Acts of Disappearance is a series of discontinuous essays by poet Fiona Wright that details her personal experiences with anorexia nervosa as well as the broader cultural and medical perceptions of the illness.

A...... Smell of Burning: The Story of Epilepsy (2016) by Colin Grant 698 Colin Grant’s autobiographical account details the effects on his family of his brother Christopher’s epilepsy. Throughout, Grant provides an overview of the history of the condition, including the roots of the social stigma that continues to surround epilepsy.

The...... Social Meaning of Mental Retardation: Two Life Stories (1982) by Robert Bogdan and 702 Steven J. Taylor The Social Meaning of Mental Retardation was an influential work in the development of the social model of disability. It presents the life stories of two adults diagnosed with “mild mental retardation,” as reconstructed from extensive interviews with scholars Robert Bogdan and Steven J. Taylor.

Songs...... of the Gorilla Nation: My Journey through Autism (2004) by Dawn Prince-Hughes 706 Songs of the Gorilla Nation is Dawn Prince-Hughes’s memoir of growing up with undiagnosed autism. She explains how working with gorillas as an anthropologist and primatologist taught her to interact more comfortably with humans.

Sounds...... like Home: Growing Up Black and Deaf in the South (1999) by Mary Herring Wright 711 Mary Herring Wright’s memoir narrates her experience as a deaf African American child in the Jim Crow South of the 1930s and 1940s. She describes attending (and later teaching in) all-black schools for the deaf and learning to communicate with her schoolmates using Black American Sign Language, a distinct version of American Sign Language developed in segregated Southern schools.

The...... Spiral Cage: Diary of an Astral Gypsy (1988) by Al Davison 715 British comics artist Al Davison’s graphic autobiographical narrative describes his struggles growing up and living with severe spina bifida, a congenital disability in which the spine and spinal cord do not develop fully. He learns to live fully through Buddhist meditation and martial- arts training, among other practices.

Squint:...... My Journey with Leprosy (2009) by José P. Ramirez, Jr. 719 Squint is a memoir about the seven years José P. Ramirez, Jr., spent confined at a leprosy hospital and the long-term psychological effects of that experience, including the stigma he faced after he was released. xxiv DISABILITY EXPERIENCES TABLE OF CONTENTS

Still...... Me (1998) by Christopher Reeve 723 Actor Christopher Reeve’s autobiography recounts his quadriplegia following a horse-riding accident. Reeve discusses his family’s role in helping him reconcile his life after the accident, his efforts to find a cure for spinal cord injuries, and his activism for people with disabilities.

The...... Story of My Father: A Memoir (2003) by Sue Miller 728 The Story of My Father relates Sue Miller’s experiences as she cares for her father, James Hastings Nichols, following his diagnosis of Alzheimer’s disease. Miller’s memoir offers personal anecdotes of Nichols before and after the symptoms of Alzheimer’s took effect, and it also summarizes the medical history and knowledge of the disease.

The...... Story of My Life (1903) by Helen Keller 732 Helen Keller’s first autobiography describes her life from her earliest memories through her education at Radcliffe College. Keller lost her sight and hearing before her second birthday, and the book describes how Anne Sullivan taught her to communicate through the use of the manual alphabet.

Stuttering:...... A Life Bound Up in Words (1997) by Marty Jezer 736 Stuttering is a memoir in which author and political activist Marty Jezer discusses his experiences with a long-term, severe stutter and its impact on both his sense of self and his career. Jezer also documents changes in social perceptions of stuttering between the 1940s and the 1990s and the history of medical treatments for the condition.

Sweet...... Invisible Body: Reflections on Life with Diabetes (1999) by Lisa Roney 740 Sweet Invisible Body details writer and professor Lisa Roney’s efforts as an adolescent and young adult to integrate Type I diabetes into her identity. It is among the earliest memoirs about the condition, celebrated by scholars as an exemplar of the value of first-person, patient-centered illness narratives.

Taking...... Heart (1990) by A. C. Greene 744 In Taking Heart, A. C. Greene discusses his 1988 heart transplant, beginning with his diagnosis of cardiomyopathy and ending with his gradual recovery. Throughout he examines the importance of advancements in organ transplantation, the difficulty finding a donor, and the importance of a patient’s medical and personal support systems while convalescing.

Teach...... Us to Sit Still: A Skeptic’s Search for Health and Healing (2010) by Tim Parks 748 British author and translator Tim Parks explored conventional avenues for relief from excruciating pain he endured from chronic prostatitis, but extensive tests indicated he was in fine health. After experimenting with alternative treatments, he eventually recovered with the help of meditation and began to doubt whether he was ever really ill and to question what is meant by disability.

Tell...... Me the Number before Infinity: The Story of a Girl with a Quirky Mind, 752 an Eccentric Family, and Oh Yes, a Disability (2016) by Becky Taylor and Dena Taylor Tell Me the Number before Infinity is a memoir written jointly by Becky Taylor, who has cerebral palsy, and her mother, Dena. The book addresses the authors’ experiences of family life as well as the discrimination Becky faced as a mainstreamed special needs student.

Too...... Late to Die Young: Nearly True Tales from a Life (2005) 755 by Harriet McBryde Johnson Disability rights activist Harriet McBryde Johnson’s memoir is composed of eleven episodes that she calls “Nearly True Tales,” which recount her experiences with disabilities due to a congenital neuromuscular disease. Her memoir openly challenges assumptions and expectations about life as a disabled person.

DISABILITY EXPERIENCES xxv TABLE OF CONTENTS

Touching...... the Rock: An Experience of Blindness (1990) by John M. Hull 759 This work is Anglo-Australian theologian and educator John M. Hull’s autobiographical reflections during the three-year period after losing his sight, which were transcribed from his audiotaped diary entries.

...... Truly Blessed (1998) by Teddy Pendergrass and Patricia Romanowski 763 Truly Blessed is a coauthored memoir recounting the life of American singer Teddy Pendergrass before and after a car accident left him quadriplegic in 1982, at the height of his musical career. The book presents Pendergrass’s disability as a personal tragedy exacerbated by a range of social factors.

Twitch...... and Shout: A Touretter’s Tale (1998) by Lowell Handler 767 Twitch and Shout is an account by photojournalist Lowell Handler of living with Tourette syndrome (TS). The book describes the difficulty of finding a diagnosis for his behavior, his experience of being ostracized, and his eventual understanding of TS as an important element of his identity.

The...... Two-in-One: Walking with Smokie, Walking with Blindness (1999) by Rod Michalko 772 The Two-in-One presents Canadian sociologist Rod Michalko’s meditations on his blindness, the concept of blindness as a cultural identity, and his relationship with his guide dog, Smokie. Using many (sometimes humorous) stories of learning from and moving with Smokie, Michalko invites the reader to explore with him what it means to encounter differing cultural understandings of blindness.

Ugly:...... My Memoir (2013) by Robert Hoge 776 Ugly is Robert Hoge’s memoir of growing up with underdeveloped legs and facial disfigurement caused by a tumor. The book concerns such topics as Hoge’s family’s reaction to his appearance, his experiences at school, his desire to play sports, and the two dozen reconstructive surgeries he underwent by adolescence.

Under...... the Eye of the Clock: The Life Story of Christopher Nolan (1987) by Christopher Nolan 779 An autobiographical novel about growing up with severe disabilities caused by cerebral palsy, Under the Eye of the Clock is narrated in the third-person and focuses on Nolan’s alter ego, Joseph Meehan, and his experiences with disabilities, including the inability to communicate orally. Nolan weaves together traditional, linear life writing with lyrical description and contemplative Christian reflection.

The...... Unheard: A Memoir of Deafness and Africa (2007) by Josh Swiller 783 The Unheard is a memoir by Josh Swiller in which he recounts the cultural differences he encountered as a deaf American man volunteering for the Peace Corps in Mununga, Zambia, in the 1990s.

An...... Unquiet Mind: A Memoir of Moods and Madness (1995) by Kay Redfield Jamison 786 Although a psychologist, Kay Redfield Jamison had difficulty diagnosing bipolar disorder in herself, especially during a time when the stigma for mental illness was still strong. She recounts her experience with manic depression (a previous term for bipolar disorder), including the various treatment methods she undertook.

Unspeakable:...... The Story of Junius Wilson (2007) by Susan Burch and Hannah Joyner 790 Junius Wilson, a deaf black man born in 1908 in North Carolina, was falsely accused of attempted rape, declared insane, castrated, and detained in the criminal ward of the State Hospital for the Colored Insane for more than sixty years. Unspeakable is important to the fields of disability history and deaf history, providing a distinctive view of deaf experience and highlighting the intersections among race, gender, and disability. xxvi DISABILITY EXPERIENCES TABLE OF CONTENTS

Until...... Further Notice, I Am Alive (2012) by Tom Lubbock 794 Until Further Notice, I Am Alive is a memoir by British journalist Tom Lubbock that documents the last two years of his life, during which he struggled with grade-four glioblastoma multiforme and a gradual loss of speech that resulted. His memoir is a reconstruction of entries from his journals and interpretations of his speech by others.

Victory...... in My Hands (1949) by Harold Russell, with Victor Rosen 798 Victory in My Hands describes Harold Russell’s experience recovering physically and emotionally after having both hands amputated following injuries he received serving in the military. The memoir covers his subsequent work in literature, film, and social movements, including his Oscar- winning role as an injured vet in The Best Years of Our Lives (1946).

Waist-High...... in the World: A Life among the Nondisabled (1996) by Nancy Mairs 803 Nancy Mairs’s memoir covers both her experience living with multiple sclerosis (MS) and the broader negative societal attitudes toward people with disabilities.

...... Waking: A Memoir of Trauma and Transcendence (2006) by Matthew Sanford 807 Matthew Sanford’s memoir describes his experiences as a recovering paraplegic, relating his initial medical care through traditional therapy and his later self-treatment through yoga.

...... Wasted: A Memoir of Anorexia and Bulimia (1998) by Marya Hornbacher 811 Wasted is Marya Hornbacher’s account of living with eating disorders throughout her childhood, adolescence, and early adulthood. She integrates reflections on medical treatment and its relationship to her own experience, and offers observations about the problematic nature of Western philosophical approaches to the body.

...... What Her Body Thought: A Journey into the Shadows (1999) by Susan Griffin 815 What Her Body Thought concerns philosopher, poet, and playwright Susan Griffin’s struggles with chronic fatigue immune deficiency syndrome (CFIDS). Presented in four sections, each with literary epigraphs, a lengthy essay, journal entries, and prose poetry, the book covers a wide variety of topics in exploring the relationships among disability, shame, and storytelling.

...... What’s That Pig Outdoors? A Memoir of Deafness (1990) by Henry Kisor 821 The first book by journalist and mystery novelist Henry Kisor, What’s That Pig Outdoors? details the various adaptations and assimilations that helped him excel as a deaf man in hearing society.

...... Wheelchair Warrior: Gangs, Disability, and Basketball (2008) by Melvin Juette and Ronald J. Berger 825 Wheelchair Warrior is Melvin Juette’s account of being partially paralyzed by a gunshot wound due to his involvement with a Chicago gang and how learning to play wheelchair basketball helped him come to terms with his new disability and changed his life.

...... White on Black (2002) by Ruben Gallego 829 White on Black recounts Ruben Gallego’s experiences as an orphan growing up with cerebral palsy in the Soviet Union. The book describes the ableist discrimination he was subjected to in children’s homes and other institutions.

A...... Whole New Life: An Illness and a Healing (1994) by Reynolds Price 833 A Whole New Life is a memoir by novelist Reynolds Price in which he reflects on his experiences with spinal cancer and the paraplegia that resulted from his treatment. Within the text he discusses his belief in the failings of contemporary medical practices and in the role of spirituality in recovery.

Wide...... Awake: A Memoir of Insomnia (2010) by Patricia Morrisroe 837 Patricia Morrisroe’s memoir explores the author’s suffering with chronic insomnia, her research into the sleep industry, and the history of treatments and literary accounts of insomnia.

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Willow...... Weep for Me: A Black Woman’s Journey through Depression (1998) 842 by Meri Nana-Ama Danquah Meri Nana-Ama Danquah, a Ghanaian immigrant in the United States, uses her memoir to share her experiences with clinical depression. Her narrative calls attention to the obstacles that migrants, people of color, and women encounter when dealing with mental illness and emphasizes the resilience of black immigrant women who live with depression and who fight their stigmatization as victims.

The...... Wounded Breast: Intimate Journeys through Cancer (2000) by Evelyne Accad 846 Lebanese feminist scholar Evelyne Accad’s The Wounded Breast is an autobiographical narrative describing the author’s breast cancer diagnosis, treatment, and recovery. Accad incorporates the perspectives of women whose cultures typically discourage open discussion of cancer and sharply critiques prevailing attitudes toward disfigurement, lax environmental policies, and the US health- care system.