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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Subtitled "A Daughter's Search for Her Father," this memoir chronicles author Mary Gordon's quest to recapture the essence that was her father, a man she idolized and adored while he was alive--and long after his death when she was only seven years old. This death she saw as the single most defining event of her life. Identification with her father was essential to the conception of self, both as a creative writer, and as a worthwhile person. So she "entered the cave of memory" but found that memory was discordant with the facts.

Gordon's father was a writer, and a convert from Judaism to Catholicism. His persona was that of an intellectual, a graduate of Harvard, a frequenter of literary circles in Oxford and Paris. He claimed to be an only child, born in Ohio. As Gordon explores her memory and the historical record, forcing herself to confront her father's political opinions--opinions which are repugnant to her, and which she had earlier chosen to ignore--she uncovers a charade.

Her father, it turns out, was an immigrant from Vilna (in Eastern Europe) and had never finished high school. He had two sisters whom he never acknowledged to his family--one spent years in a mental institution where she ultimately died. Among his published writings are pornography and political diatribe (he was an anti-Semite and a facist); his writing was stylistically flawed.

This memoir is Mary Gordon's attempt to come to terms with what she learned about her father. It is the narrative deconstruction and reconstruction of the author's self; it is both biography and autobiography; a reflection on loss and recovery.

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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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Sims sees his book in the tradition of blazons anatomiques, “poetic tributes to the individual parts of the female body” originating in France in the mid-sixteeenth century. He adds, of course, men, including Adam. Working from head to toe, Sims assembles a very wide variety of scientific facts, cultural perceptions, and representations of the human body by artists, writers, and scientists.

Sims sticks to the outside of the body—no internal organs, nor, it follows, no sense of the integrated body. After a brief Overture (on skin), Part One, Headquarters, treats hair, face, eye, ear, nose, and smile (mouth). Part Two, The Weight of the World, discusses arms, hands, breasts, and the navel. Part Three, “A Leg to Stand On” (but no mention of Oliver Sacks), deals with “Privy Members” (the genitals), the buttocks, legs, and feet. There is no concluding chapter.

Sims draws on sources as diverse as Greek myth, Darwin, Lombroso, French painters, movies, popular culture, Jane Goodall’s chimps, the Bible, feminist writers, William Blake, etymologies, anthropologists, and modern science writers. There are some references to Native American cultures, Africa, and the East, but he stays mostly in the Western tradition.

Chapter 8, “The Monkey’s Paw,” is a good example of Sims's method. He discusses (in this order) handshakes, carpal tunnel problems, Michelangelo’s God and Adam on the Sistine ceiling, the “phalangeal formula” of handbones in mammals, Jesus’s crucifixion, Robert Schumann’s hand troubles, the importance of the thumb for humans, fingerprints, palmistry, and handedness (Ben Franklin was left-handed) and more in 40 pages. The interesting facts keep coming, but there is no basic theme or concluding overview.

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Peter Selwyn spent the first ten years out of medical school at Montefiore Medical Center in the Bronx, caring for HIV-positive patients--mostly intravenous drug users and their families--in the early years of the AIDS crisis. As he worked with dying young men and women and their families, Selwyn returned to his own unexplored pain surrounding the loss of his father, who fell or (more likely) jumped from a 23-story building when Selwyn was a toddler. Mirroring their function in Selwyn’s life, the stories of the five patients who most affected him serve in this book as the threshold to the narrative of how Selwyn investigated, mourned, and commemorated his father’s death, finally revaluing it as central to the person and doctor he became.

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According to the U.S. Department of Health and Human Services, nearly thirty-one percent of the American public is obese; obesity accounts for 300,000 deaths a year, making it the second-most common preventable cause of death after cigarette smoking; individuals who are obese have a fifty to one-hundred percent increased risk of premature death from all causes.  On the opposite end of the scale, so to speak, is anorexia, which, as one of the deadliest of psychiatric diseases, claims up to fifteen percent of its sufferers who either die of suicide or complications related to starvation; about one-third spend their lives dominated by their obsession with food, and almost half never marry. 

How can we ever understand the psychological, physical, emotional, cultural and spiritual complexity of eating disorders, whether they result in morbid obesity or in a starving body digesting itself?  Ann Pai's memoir opens a window to reveal the inner world of a food obsession, her own, and holds up a mirror to reflect the outer experience of a dying, five hundred fifty pound woman, her sister.

The narrative weaves together three strands:  the sweet but unsentimental history of two sisters growing up in the midwest--Joyce, the elder of the two, and Ann, younger by almost five years; the detailed and horrific account of Joyce's sudden hospitalization on September 11, 2001, and her inexorable decline through multiple, undiagnosable and fatal illnesses as the result of her obesity; and the stream-of-conscious and raw monologue of Ann's own struggle to manage a compulsive eating disorder.

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This absorbing, sad, humorous evocation of an impoverished Irish Catholic childhood describes the first nineteen years of Frank McCourt’s life--from his birth in Brooklyn, New York; through the family’s emigration four years later to his mother’s roots in the slums of Limerick, Ireland--and ends with McCourt’s return migration to America, a young man on his own. McCourt sets the scene in his first lines: "When I look back on my childhood I wonder how I survived at all. It was, of course, a miserable childhood: the happy childhood is hardly worth your while. . . the poverty; the shiftless loquacious alcoholic father; the pious defeated mother moaning by the fire; pompous priests; bullying schoolmasters . . . . "

Born during the Great Depression, the author leads us in lilting present-tense narrative through the struggle and occasional small joys of daily life with siblings, school friends, and the adults who circumscribe his life. He is an alien in his parental homeland, the oldest child of a father whose background in "the North" engenders continual suspicion, and a mother (Angela of the book’s title) who had never known her father and whose own mother is as miserly with her affections as with offers of economic assistance.

The hardships in Limerick are so profound that starvation is a way of life. "Consumption," pneumonia, and typhoid are rampant; children go to school barefoot or in pieces of flopping rubber; stealing is a necessity. Frank’s tiny sister and twin brothers die. Above all, there is "the drink"--the endemic disease of Irish fathers who spend their weeks’ wages in the pub on Friday night.

Frank leaves school to earn money for the family (his father had joined the war-time wave of work in England, but continued to drink his earnings away), and to save for a return to America. Blessed with verbal skills and stamina, through stealth, charm and struggle he manages to save what is needed to book ship’s passage to America. As the Hudson River flows by en route to Albany, the ship’s Wireless Officer says to Frank, "My God, . . . isn’t this a great country altogether?" Answers Frank in the single phrase comprising the last chapter, " ’T. is."

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The text explores the experiences of a nurse practitioner in an inner city OB-GYN (Obstetrics & Gynecology) clinic and four of her women patients, from a fifteen-year-old homeless pregnant child to a mature woman struggling with cancer. Another of her patients is pregnant and drug addicted; a fourth suffers from pains that come from buried memories of sexual abuse. The stories of all four patients weave in and out of the narrator's own stories about herself, her own health and illness experiences, her own respectful appreciation of the female body.

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Couser, long interested in autobiography, explores the ethics of representation in biographical writing, and in particular, the ethics of representing vulnerable subjects--for example, the aged or very young, the sick or impaired, or those who are "socially or culturally disadvantaged." He is concerned with representation of people who are intimately connected to the biographer, either as family members, or in some other "trust-based relationship." Couser argues that the relationship between vulnerable subjects and their biographers is analogous to that between patients and their physicians and that therefore principles of bioethics should be applied to such life writing, especially the principles of autonomy, nonmaleficence, and beneficence.

Couser explores life writing and betrayal (Chapter 1), outlines how he will apply the principles of biomedical ethics and ethnographical ethics to life writing (Chapter 2), and applies these principles to examples of collaborative autobiography (Chapter 3). He then critiques in detail Michael Dorris’s memoir about his adopted son, The Broken Cord (Chapter 4); the work of Oliver Sacks (Chapter 6); memoirs of euthanasia (Couser calls these "euthanographies"), Saying Goodbye to Daniel: When Death Is the Best Choice, by Julia Cassutto Rothman; Rescuing Jeffrey, by Richard Galli, and But What If She Wants to Die, by George DeLury (Chapter 7). Finally, in the last chapter, Couser considers how investigation of the human genome might influence the "scripts" of our lives and hence life writing, and also how life writing might be a counter discursive force against genomic essentialism.

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