Summary:

This thought-provoking book is a collection of readings which the editors have found to be particularly useful for a course they teach, "What’s Normal?" It is their intent to facilitate consideration of how the world is experienced by those who are socially marginalized because of their physical appearance. The title of the anthology derives from an article written by the literary critic, Leslie Fiedler, and reproduced as the lead-off essay. Fiedler argues that the propensity of cultures throughout history to define the normal and to make political decisions about physical "abnormality" has reached a point where the rich will perpetuate the cult of normalcy (by paying for medical treatments that ensure it) while "the poor . . . will be our sole remaining Freaks."

The anthology is divided into several sections: Part I contains nonfiction articles, essays, and excerpts from books. Part II reproduces fiction, poetry, and drama and is further subdivided into "Abnormal Weight and Eating Disorders"; "Abnormal Height-Dwarfism"; and "Deformity and Disability." Many of the pieces have been annotated individually for this database (e.g. Fat by Raymond Carver, annotated by Carol Donley and also by Felice Aull and Irene Chen; Skanks by Rennie Sparks; The Fat Girl by Andre Dubus; Weight Bearing by Patricia Goedicke; Dwarf House by Ann Beattie; The Song the Dwarf Sings by Rainer Maria Rilke; The Dwarf by Ray Bradbury; The President by Donald Barthelme; The Birthmark by Nathaniel Hawthorne; The Elephant Man by Bernard Pomerance and others).

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Bessie, who has been caring for her invalid aunt and her father who is helpless after suffering a stroke, discovers she has leukemia. While this does not seem like a subject for comedy, this warm-hearted play really has some funny moments. Laughter is good medicine in this caregiving household. Bessie’s sister, Lee, who has been out-of-touch for years, arrives with her two sons in the hopes that one of them might be a bone-marrow match for Bessie. For Lee the idea of devoting her life to caring for helpless aging relatives would be wasting it.

One reason Lee doesn’t want to take over the caregiving for her father is that she has plenty of trouble trying to be a mother to her two sons, particularly Hank who has been committed to a mental hospital because he burned down the family home. She tells the hospital psychiatrist "Hank is something I cannot control, so what is the point of my visiting?" While Bessie will not find a cure for her leukemia, an important start on healing does occur in the play as Bessie helps both Hank and Lee to care for each other.

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The poet considers pain as a place she inhabits, from which she could (hope to) escape, " . . . returned magically to life . . . ." But it is inescapable, "like your softest skin . . . a room no one else can come into . . . . " Finally, it is "only feeling" that defines this place, a place of silence, suffering, and separateness.

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Editor Helman is a physician and anthropologist as well as a published author of short stories, essays, and a medical anthropology textbook. For this anthology he has selected short stories, case studies, memoir and novel excerpts whose purpose is "to illustrate different aspects of [the] singular but universal relationship" between doctors and patients (1). In the introduction he discusses how these selections illustrate storytelling in medicine; the unique experience of individual illness; differences between fast-paced contemporary technological specialized medicine, and an older more leisurely medicine where the physician employed all his/her senses to diagnose illness, doctors made house calls, and patients recovered over time, or died.

The anthology is subdivided into three parts: "Doctors," represented by the work of Mikhail Bulgakov, Franz Kafka, Sir Arthur Conan Doyle, and Rachel Naomi Remen; "Patients," represented by authors Renate Rubenstein, Ruth Picardie, Rachel Clark, Clive Sinclair, W. (William) Somerset Maugham, and O. Henry; and "Clinical Encounters," with work by Oliver Sacks, Cecil Helman, William Carlos Williams, A. J. (Archibald Joseph) Cronin, Anton P.Chekhov, and Moacyr Scliar. (In total there are 16 selections.) Each piece is preceded by a paragraph of biographical information about its author and an introduction to the text.

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This story follows John and Aileen Crowley and their three children, the two youngest of whom have a rare "untreatable" genetic disease. Pompe disease gradually degenerates muscle until patients cannot breathe or sit up; it also dangerously enlarges the heart. Determined to try to save his children, John Crowley started up a biotech company to develop an enzyme that would replace the non-functioninging one in his children. Others researchers in other companies were trying different approaches. Everyone made mistakes and created problems along the way.

Finally, in "the mother of all experiments," the four promising drug developments were tested against each other in a double-blind trial. After five years of development, the "special medicine" was finally given to the Crowley children. Daughter Megan, a real fighter and outgoing personality, won over the hearts of the researchers. Interesting conflict of interest issues increase the tension in this race for a cure.

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Angels in America is really two full-length plays. Part I: Millennium Approaches won the 1993 Pulitzer Prize for Drama. This play explores "the state of the nation"--the sexual, racial, religious, political and social issues confronting the country during the Reagan years, as the AIDS epidemic spreads.

Two of the main characters have AIDS. One, Prior, is a sane, likeable man who wonders if he is crazy as he is visited by ghosts of his ancestors, and selected by angels to be a prophet (but the audience sees the ghosts and angels too). The other main character, Roy Cohn, based on the real political figure, is a hateful powerbroker who refuses the diagnosis of AIDS because only powerless people get that sickness.

A rabbi opens the play, saying that in the American "melting pot" nothing melts; three Mormons try to reconcile their faith with the facts of their lives. Belize, an African-American gay nurse, is the most compassionate and decent person in the play, along with Hannah, the Mormon mother who comes to New York to try to untangle the mess of her son and daughter-in-law’s marriage. In contrast to their commitment, Prior’s lover, Louis, abandons him in cowardly fear of illness. The play portrays a wide range of reactions to illness, both by the patients and by those around them. Included is the realization that much of the nation’s reaction is political and prejudiced.

The second play, Part II: Perestroika (winner of a Tony Award), continues the story, with the angel explaining to Prior that God has abandoned his creation, and that Prior has been chosen to somehow stop progress and return the world to the "good old days." Prior tells the angel he is not a prophet; he’s a lonely, sick man. "I’m tired to death of being tortured by some mixed-up, irresponsible angel. . . Leave me alone."

Ironically, Belize is Roy Cohn’s nurse, as Cohn--even as he is dying in his hospital bed--tries to manipulate the system to get medication and special treatment, and to trick the ghost of Ethel Rosenberg into singing him a lullaby. Meanwhile, the Mormon mother, Hannah, manages to help save the sanity and integrity of her daughter-in-law, Harper; and she also is a good caregiver for Prior.

At the end of the play, we see Prior, Louis, Belize, and Hannah sitting on the rim of the fountain in Central Park with the statue of the Bethesda angel. They say that when the Millennium came, everyone who was "suffering, in the body or the spirit, [and] walked through the waters of the fountain of Bethesda, would be healed, washed clean of pain."

These four characters represent Jews and Christians and agnostics; homosexuals and heterosexuals; blacks and whites; men and women; caregivers and patients; two generations--the American mix, in this case, caring about each other. Somehow, although the real angels in this play seem inept and reactionary, these folks together at the Bethesda angel fountain seem competent contributors to the future.

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Knapp describes how she gradually became an alcoholic, drinking more and more, until she couldn't live without alcohol. She found drinking to be the most important relationship in her life; she loved how it made her feel, how it coped with her fears and worries. When family and friends spoke to her about her drinking, she made promises to them she couldn't keep. Finally one time while drunk she was carrying two children accross the street when she fell. She could have killed them. Three months later she checked into rehab and gave up drinking. She used the support of Alcoholics Anonymous to help her stay sober and to gradually learn how to love people, instead of alcohol. Her need for protection and for escape, which alcohol gave her, had to be replaced with an honest facing of problems and with social skills. This memoir also describes her struggling with anorexia.

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The poet's daughter suffered from Guillain-Barré Syndrome and was in a rehab institute. The mother, who narrates the poem, observes several of the other children there, all of whom seem either abandoned by their parents or orphaned. Each stanza describes a different child with a different disability (and no family there for him or her).

The only mother who appears stays far away from her child. "When he goes home, Frankenstein with cane, his mother / clicks her high heels quickly away, as far ahead / of him as she can get."

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Contrary to what the title might suggest, this is not a memoir of drug addiction. Writer and poet Tom Andrews has hemophilia, and codeine is the analgesic he requires during excruciatingly painful internal bleeding episodes. In this diary, begun while recovering from a leg injury, Andrews reflects on his particular experience of life and hemophilia. He makes clear that " . . . hemophilia is only one of the stories my life tells me . . . " (p. 29)

The memoir interweaves the author's physical, emotional, and existential journey through the convalescent period with flashbacks of childhood and his relationship with his ailing brother, now dead, to whose memory the book is dedicated. Brother John's fatal illness with kidney disease shaped--and continues to shape--Tom's life as much as did the hemophilia.

On the one hand their parents' concern for John took Tom out of the spotlight and allowed him to pursue his own interests. These extended to motorcycle racing, playing in a punk band, and setting a record for continuous hand clapping--at age 11--that was recorded in the Guinness Book of World Records. On the other hand, Tom's guilt over surviving John's early death may account for an almost reckless disregard of his own precarious physical condition. A constant subtext is the deep grief and abiding love of the living brother for the dead one.

But this is not a mournful book. It is an engaging memoir that provides unusual access and insight into the world of hemophilia, especially with regard to the painful "bleeds." It is the sense of exile and separation from others that is most disturbing for Andrews when in the throes of unrelieved pain. He takes us through the mental concentration required to endure this pain and the liberating relief to mind and spirit provided by codeine. Memory, perception, and writing provide the additional resources he needs to re-connect with the world.

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This is an autobiographical novel in which the author relates the emotional life of a childhood and young manhood lived with cerebral palsy. The disease is never named (except on the fly-leaf of the book cover); its impact is revealed through incidents and personal relationships experienced by the protagonist in a narration which reflects by its style, the intellectual maturation from childhood to adulthood.

As a child, Felix spends long periods in a children’s home, to receive therapy and educational training, and to relieve his family of the strain of his care. Felix learns to walk with painstaking effort and surges of determination, but the reactions of others, even of his mother, make clear that he is not normal. His social life is complicated by anti-semitism and by just being from a different religious background. With puberty comes sexual longing and the need for female affection, and eventually the painful recognition that his desire will not be reciprocated. What saves Felix is the life of the mind and a love of literature and writing which a few influential mentors and a clever, similarly disabled friend help him to develop.

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