Summary:

Simi Linton, a major voice in disability rights activism, has written the story of her journey from car accident "victim" to college professor, disability studies scholar, and political activist. Her memoir of personal experience is interwoven with the evolution of her thinking about disability as social construct and the development of the disability studies movement and political engagement.

In 1971, Linton was a young married hippie--a college dropout hitchhiking her way to a protest march against the Vietnam War, together with her husband and best friend. Suddenly there was a car crash: her husband and best friend were killed and Simi sustained a spinal cord injury that left her legs paralyzed. There followed a year of hospitalization, surgeries, and in-house rehabilitation.

Although forced to be a recipient of attention and care, Linton even then was not inclined to play a passive role. "Even in this forest of overseers, where every move I made was scheduled . . . I had opinions. . . . Doctors . . . had saved me, and saved all my new friends, but I was outraged when they spoke for me or spoke down to a nurse I liked" (15). While still institutionalized, Linton took on the cause of petitioning the medical staff to educate patients like her about leading a sexual life as a disabled person. She determined to return to college as a psychology major so that she could eventually implement sexuality programs in rehab centers.

Linton details the activities of daily life that she had to adjust to and the strategies she adapted to maneuver, with her wheelchair, in her home, to go shopping, to travel, to attend classes. Family and friends and some social services were helpful but everywhere, life was designed for the abled body. This was a "fact of life"--"I had a feeling it could be different, but didn't know where to begin. I was having enough trouble just getting around" (28). She kept from thinking too much about her situation and her losses by staying busy and trying to be as independent as possible, but eventually needed the support of a therapist "who could bear my weight" (37).

It was in 1975 that Linton's disability rights "consciousness" was first stirred. On her own, she left her New York apartment to live in Berkeley, California for awhile. There she discovered "The Center for Independent Living" where the employees and volunteers were themselves disabled and whose goal was to assist disabled individuals to find ways of living independently. "I had been so tentative about my disability, and had, up to now, only ascribed a very personal meaning to it--this is what happened to me, this is the effect on me--that their forthright ownership of disability and their drive to take action based on the collective experience set my mind racing" (53).

Another defining moment came when Linton took a course on the psychology of women at Barnard College. "We examined the myths inherent in the so-called objective knowledge base" (64). Simi drew a parallel between knowledge generated from the male perspective and knowledge presented from the perspective of the abled body. "Unlike the [classroom] readings . . . which challenged traditional conceptualizations of women's roles and framed issues from an insider's perspective, the rehab literature recounted clinicians' views about disabled women's needs and experiences that seemed far removed from the way that I and the disabled women I had been meeting actually felt. It looked at us, and, it felt, through us, and I mistrusted all of it" (64).

The memoir continues with Linton's decision to work outside the realm of institutional medicine, her co-organizing the National Coalition of Sexuality in Disability, her falling in love with and marrying the man who is her (second) husband, her growing awareness of the silence surrounding disability and questions of access, and her dedication to change individual and society's discriminatory practices and to bring awareness of what we now call "the social construction of disability."

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This is the second edition of Hawkins's groundbreaking work on illness narratives--autobiographical and biographical accounts of illness that she calls "pathographies." This edition preserves the text of the earlier (1993) work but updates it with a new preface and a new concluding chapter. This new chapter (chapter 6) surveys works written since 1992 and expands the discussion of mythic thinking and narrative.

Hawkins posits that mythic thinking pervades illness writing. Mythic constructs, she argues, organize the way patients understand their illness, how they interact with the institution of medicine, and how they write their narratives. Myths are formulative in that they attempt to create order out of the disorientation of illness. In the texts selected, Hawkins identifies "archetypal" (transcultural, transhistorical) myths--myths of journey, battle, and death and rebirth (discussed in the first edition as well).

In this edition Hawkins introduces a new term: "ideological" myths. Ideological myths are "linked to a particular culture at a particular time" (xiii). In this category is the myth of healthy mindedness, a way of thinking that was labeled "mythos" in the earlier edition. Hawkins proposes two additional ideological myths, discussed in chapter 6: the Gaia myth (that links illness and environmental problems), and the "myth of narrativity" (xiii).

The book's chapters are organized around the myths enumerated above, with many examples. Most of the works discussed were written in the latter part of the 20th century, but there are several pages devoted to John Donne's Devotions upon Emergent Occasions (see annotation in this database). Hawkins determines how, in specific cases, the myths she has identified function--whether they are "enabling" or "disabling," and whether they are "medically syntonic or dystonic" (21-24). Myths that have an enabling function are adaptive, useful, help recovery or adjustment, ameliorate suffering. They are often medically syntonic--compatible with the belief system of Western medicine. One notable exception to this is Hawkins's paradigm of the ideological "myth of healthy mindedness," in which to be enabled often means to controvert traditional medical practices.

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Fraser’s subtitle is accurate; this book tells about a middle-aged woman rediscovering her difficult past of incest from her father and abuse, as a child, from another man. She tells her life story of growing up in a working-class neighborhood in Hamilton, Ontario, Canada, going to university, marrying, and becoming a journalist. All the while, anger and rage fuel her, but it is only after surgery (for fibroids) and psychotherapy that she can recall the abuse and has it corroborated by others. Fraser understands that her personality split into three personae; she uses her dreams, her writing (including six novels), and her childhood drawings to understand what happened to her. Finally she is able to forgive her father (although after his death) and continue with her successful career as a writer.

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The author, a renowned monologist, gives a hilarious account of his adventures as he attempts to cure a disturbing change in vision, diagnosed as macula pucker. His encounter with conventional medicine, including a physician who coldly recommends "a little macula scraping" leads the author on a worldwide search for the perfect, alternative cure.

He winds up naked and panting in a "Native American sweat lodge," following a rigid raw vegetable diet, trying the Christian Science prayers of his youth, and participating in a wild and gory psychic healing session in the Philippines with the "Elvis Presley of psychic surgeons." He finally controls his multiple anxieties about entering middle age, listens to his sensible fiancee, and undergoes conventional surgery.

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Having remarried after a long and partly happy life with a woman who bore him three sons, novelist Campbell Armstrong lives in rural Ireland with his second wife. He learns that his first wife, who works in Phoenix, has advanced lung cancer and, with his second wife’s blessing, goes to spend time with her and their grown sons. In the course of that trip, he reflects on their life together, their romance, his alcoholism and its effect on their family, their move to the U.S., their losses, and the remarkably enduring affection between them and, surprisingly, between the first wife and the second.

Completely surprising all of them, a daughter his first wife gave up for adoption, who has searched for years for her birth mother, shows up in the months before Eileen’s death and makes the trip to Phoenix to meet her birth mother. Her appearance turns out to be a gift to the whole family. She assuages decades of sorrow and longing in both her and her mother’s hearts. She herself has cancer, not as advanced as her mothers. Both she and her mother work in health care professions. Much psychological and spiritual healing is accomplished between them in the short time they have before Eileen’s death several months later.

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At seven months, Remy, daughter and second child of Heather and Lon Davis, is hospitalized with a seizure that, after several days of agonizing uncertainty, is traced to a brain tumor. This narrative of her diagnosis and treatment, told by her mother and very much from her mother’s perspective, is not only a chronicle of a medical event, but, perhaps more centrally, of a spiritual awakening in the mother’s life. From a person uncertain about and largely indifferent to prayer, faith, and spirituality, Ms. Davis becomes, over the course of her daughter’s treatment, convinced of the presence of God, the power of prayer, and the availability of grace in precisely those circumstances that threaten life and lifestyle and bring individuals face to face with their deepest fears and deepest needs.

A series of “coincidences” makes her more and more aware of how little she controls in the grueling process, and how much of comfort, relief, and unexpected aid comes as unsolicited gift from un expected places. The child recovers, unlike several others the mother encounters during her weeks of witnessing hospital life. The mother emerges profoundly different for the experience, and clearer in her purposes as a writer and, eventually, a teacher.

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In 1996, at the age of 31, David Biro is preparing for his specialty examinations in dermatology and is set to share a practice with his father. But he develops a visual disturbance. After repeated testing, he is found to have the rare blood disorder of paroxysmal nocturnal hemoglobinuria. The diagnosis was problematic, but the treatment choices are overwhelming. His youngest sister is a suitable donor, and he opts for a bone marrow transplant. He realizes that his decision was influenced not only by the diagnosis, but also by his personality and his reaction to the physicians.

Advance preparations are hectic and sometimes comic, especially his deposits at a local sperm bank. The pain of the transplant and the six weeks imprisonment in a small hospital room are told in graphic detail. The athletically inclined doctor suffers many complications: exquisitely painful ulcers of the scrotum, mouth, and esophagus; inflammation of the liver; unexplained fever; drug-induced delirium; weakness and weight loss.

His parents, sisters and friends leap into action to provide round-the-clock presence, but his independent wife, Daniella, resents the invasion. While David’s body is wracked with drugs and radiation, his family and his marriage are subjected to destructive forces too. Yet all--body, family, and marriage--emerge intact, though changed, by their experience.

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One morning in the shower Joyce Wadler, "a journalist, forty-four, Jewish, never married," discovers a lump in her left breast. In this brief, bright, and very readable account, Wadler describes what happened next, taking us through medical examination, diagnosis, and successful lumpectomy and chemotherapy.

But this is much more than a simple patient’s story. For one thing, Wadler is an intrepid researcher, and we learn a good deal about breast cancer and the often agonizing therapeutic choices its victims face. For another, she does not separate her medical adventure from the rest of her life, which includes a day job as a writer for People magazine, a book project, a semi-functional relationship, and a Jewish mother.

Finally, Wadler uses her ironic-sardonic sense of humor to great advantage--remarking, for instance, that through her post-diagnosis impulse to live in the present and not worry about her lover’s monogamy, cancer had made her "the dream girl of every uncommitted man in Manhattan"!

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This series of 12 related poems constitutes the final section of Ostriker’s collection, The Crack in Everything. In the first poem, the mammogram positive and her surgery scheduled, the poet crosses "The Bridge" to the hospital. In "The Gurney" she goes under. "Riddle: Post Op" begins: "A-tisket a-tasket / I’m out of my casket . . . . " The poet teases us by asking what the secret is "underneath my squares of gauze." The answer: "Guess what it is / It’s nothing."

Subsequent poems include a lament over "What Was Lost," "Wintering," "Healing," and an "Epilogue: Nevertheless." In the wonderful "Years of Girlhood (for My Students)," Ostriker begins: "All the years of girlhood we wait for them. / Impatient to catch up, to have the power / Inside our sweaters to replace our mother." But in the end, a year later, the poet is well again and tells her friends, "I’m fine, I say, I’m great, I’m clean. / The bookbag on my back, I have to run." ("Epilogue: Nevertheless").

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Actor Clark Middleton wrote this autobiographical dramatic monologue in collaboration with Robert Knopf. Stricken with juvenile rheumatoid arthritis at age four, Middleton enacts his early painful experience -- painful physically and emotionally. He takes us through an adolescence complicated by physical difference, his interaction with medical professionals over the years, and his craving to become an actor. Middleton struggles with the medical establishment, the pain and humor of coming-of-age, and ultimate self acceptance. Eventually, he was able to have both hip replacement surgery and a career in theater and film. The play is funny, poignant, and instructive.

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