Summary:

Writer Paul Monette's first-person account of living through his lover Roger's last nineteen months with AIDS, from diagnosis to death (1986), told in language that is poetic and highly articulate. The couple faces not only progressive physical degeneration (Monette calls time with AIDS a "minefield") but also the agonizing issues of truthtelling with their families, friends gay and straight, and the world, in "the double closet of the war."

Fact-finding is a constant obsession in this story, not only about who is positive and who knows, but also in the rapidly-changing medical arena, where through Monette's extraordinary efforts Roger becomes the first person west of the Mississippi to be put on the drug, AZT. Monette is so devoted a caregiver that he often loses himself--a problem he solves in part by turning to the subject of AIDS as a writer.

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In the final year of World War II, in a bomb-damaged villa in the hills north of Florence, four characters seek shelter and in their various ways attempt to undo the damage of the war. Kip, the Indian munitions expert, by day disarms unexploded mines and bombs. The title character, badly burned all over his body when his plane crashed in the desert, lies in a bed, morphine deadening his pain and loosening his memory, reminiscing about a love affair and his career in military intelligence as a desert expert.

The young Canadian nurse Hana, emotionally shut down as the result of her work in the war and the death of her lover, has refused to withdraw with her unit and lovingly tends to the English patient and develops an intimate relation with Kip. Caravaggio, a friend of Hana's parents and with an ambiguous interest in her, dips into Hana's supply of morphine and uses his intelligence skills to steal things for the group and also to probe into the mystery of the history and identity of the "English" patient. The novel ends shortly after radio news of the dropping of atomic bombs in Hiroshima and Nagasaki drives Kip away from the company of the companions he sees with angry irony as part of a destructive "Western wisdom" (p. 284).

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Franklin Hata, comfortably retired from his medical supply business, reflects on his life--a life that spans several continents, three cultures (ethnic Korean brought up in Japan and emigrating in adulthood to the U.S.), service as a medic in World War II (in the Imperial Army of Japan), adoptive fatherhood, and a fizzled out romance with a well-to-do suburban Caucasian widow. At first out of place in the wealthy New York suburb where he settled, Hata has worked hard to achieve acceptance there, taking pains to fit in, creating no disturbances, never complaining, even when provoked by thoughtless schoolchildren or narrow minded adults.

The major disappointment of his adult life has been his tempestuous relationship with his adopted mixed-race daughter, Sunny, who left his home to live on her own when only a teenager. Even failed parenthood, however, has been absorbed by Hata. For although Hata claims that he had always wished to "pass through with something more than a life of gestures," (299) in fact he has labored to maintain equilibrium with a carefully designed "gesture life" of daily routine and superficial social niceties.

In the idleness of retirement and the solitude of his large, empty Tudor home, disturbing memories impinge on these routines and force a re-evaluation of his life and his relationship with the estranged Sunny. As a young medic during World War II, Hata had undergone an emotional and moral crisis when he fell in love with one of the Korean "comfort women" brought into his care in the Japanese army camp (in Burma) to which he was assigned. In the midst of rape and murder, Hata had to make choices, and these choices he can no longer justify to himself.

Further, he comes to understand that his relationship with his daughter has been colored by those long ago events. "In a way, it was a kind of ignoring that I did, an avoidance of her as Sunny -- difficult, rash, angry Sunny -- which I masked with a typical performance of consensus building and subtle pressure, which always is the difficult work of attempting to harmonize one's life and the lives of those whom one cherishes." (284)

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Primo Levi was imprisoned at the Auschwitz concentration camp in 1944. He survived the experience, probably in part because he was a trained chemist and as such, useful to the Nazis. Soon after the war ended, he wrote several books about his experience. The Drowned and the Saved, however, was written 40 years later and is the work of memory and reflection not only on the original events, but also on how the world has dealt with the Holocaust in the intervening years. Fundamental to his purpose is the fear that what happened once can happen (and in some respects, has happened) again.

Chapter 1, "The Memory of the Offense," dissects out the vagaries of memory, rejection of responsibility, denial of unacceptable trauma and out and out lying among those who were held to account by tribunals as well as among the victimized. Levi does not spare himself: "This very book is drenched in memory . . . it draws from a suspect source and must be protected against itself" (34). Even so, he insists, memory and the historical record are crucial to combating Nazi assumptions that their deeds would go unnoticed (they were destroying the evidence), or disbelieved.

In "The Gray Zone" (2) Levi challenges the tendency to over-simplify and gloss over unpleasant truths of the inmate hierarchy that inevitably developed in the camps, and that was exacerbated by the Nazi methodology of singling some out for special privileges. He outlines the coercive conditions that cause people to become so demoralized that they will harm each other just to survive. (And when they refused to collaborate, they were killed and immediately replaced.)

Chapter 3, " Shame," is, in my opinion, the most profound and moving section of the book. Levi begins it by discussing a phenomenon that occurred following liberation from the camps: many who had been incarcerated committed suicide or were profoundly depressed. This Levi attributes to shame and feelings of guilt. "Coming out of the darkness, one suffered because of the reacquired consciousness of having been diminished . . . Our moral yardstick had changed [while in the camps]" (75). Beyond that, there is the sense that "each one of us (but this time I say 'us' in a . . . universal sense) has usurped his neighbor's place and lived in his stead" (81-82).

In the concentration camp, says Levi, it was usually "the selfish, the violent, the insensitive, the collaborators of the 'gray zone,' the spies" who survived ["the saved"] while the others did not ["the drowned"] (82). Only the drowned could know the totality of the concentration camp experience, but they cannot testify; hence, the saved must do their best to render it. Since Levi was one of those saved, he is "in permanent search of a justification . . . " and although he feels compelled to bear witness, he does not consider doing so sufficient justification for having survived. In this chapter Levi also discusses why inmates did not commit suicide during their incarceration:" . . . suicide is an act of man and not of the animal . . . because of the constant imminence of death there was no time to concentrate on the idea of death" (76).

"Communicating" (4) deals with the emotional and practical consequences of not being able to understand the German commands of the captors, or the conversation of the mostly German speaking prisoners (Levi was Italian but spoke some German). Levi also describes the additional suffering of those who were cut off from all communication with friends and family. "Useless Violence" (5) gives examples of how the Nazis tormented their prisoners with "stupid and symbolic violence."

In "The Intellectual in Auschwitz" (6) Levi speculates about how and in what circumstances being educated or cultured was a help or hindrance to coping with the situation. In this chapter he considers also whether religious belief was useful or comforting, concluding that believers "better resisted the seduction of power [resisted collaborating]" (145) and were less prone to despair. Levi, however, was never a believer, although he admits to having almost prayed for help once, but caught himself because "one does not change the rules of the game at the end of the match, not when you were losing" (146).

Chapter 7, "Stereotypes," addresses those who question why many concentration camp inmates or ghetto inhabitants did not attempt to escape or rebel, and why many German Jews remained in Germany during Hitler's ascendance. As in all the other chapters of his book, Levi discusses the complexity of these situations. "Letters from Germans" summarizes his correspondence with Germans who read his earlier books. The book ends ("Conclusion") with the exhortation that "It happened, therefore it can happen again . . . " (199).

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This is American writer Richard Wright's story of his life as a black child in the American South (Mississippi, Tennessee, and Arkansas) in the early decades of the 20th century. Black Boy opens with the disaster in which Richard at the age of four accidentally burns down his grandparents' house and is beaten nearly to death by his mother as punishment. The book ends with Richard's hopeful escape north to Chicago at the age of eighteen.

In between are years of heart-stopping survival stories, as Richard, an intelligent and willful child who tries to resist many of the demands of his strongly segregated environment, runs head-on into the hatred of racists and the deep poverty, hunger, and oppression that so often were the lot of the system's victims. (On the subject of hunger, one of the book's working titles was American Hunger, and Wright was chronically hungry all these years. He gets so used to extreme hunger that at one point late in the book after a short interlude with regular meals he is surprised to discover that he can suddenly read faster!)

Black Boy, originally published by Harper & Bros. in 1945, is only the first half of Wright's original manuscript. After production had begun on the complete manuscript, Wright accepted an offer from the Book-of -the-Month Club to make his book one of their selections if only the first half were published. The second half was first published in its entirety by Harper & Row as American Hunger in 1977. The 1993 edition titled Black Boy (American Hunger) brings both halves together for the first time. The second volume describes Wright's experiences in Chicago from 1926 to 1936, including his frustrating attempt to work with the Communist Party as a way of supporting unemployed workers during the Great Depression.

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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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The narrative voice (probably female) links the ancestral past of a Chickasaw heritage with the present and future, "remembering" a long, forced march to Oklahoma under military surveillance. The women sewed tear dresses "because settler cotton was torn" but the miserable circumstances generated tears "so they were called / by this other name, / for our weeping." She sees herself as the reason for their survival, and at the same time, her ancestors ". . . walk inside me." The poem is cleverly constructed to give a strong sense of the continuity of generations and of the impact of a people’s history on individual lives.

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Written in a style resembling religious litany, this is the tale of a disastrous teen-age marriage and its criminal consequences. The setting is California. Maria is a poor Mexican-American who meets and attracts Russell, a working class Anglo. Although ambivalent, Maria sees marriage to Russell as the path to American, white respectability. Her earlier hopes of achieving this status through her own efforts have been frustrated by the reality of poor academic performance. She is eager to get away from the household of her deeply religious mother. Russell is brooding, taciturn, and carries the physical and psychic wounds of an abused childhood--his father is a partially reformed alcoholic who deliberately burned Russell's hand.

The pair are ill-equipped for marriage or parenthood and Maria soon feels trapped. Their son, John, avoids provoking them by being a "good boy," hoping to prevent their frequent arguments. Russell's deprived childhood accounts, perhaps, for his obsessively jealous fixation on Maria. He is jealous even of the attention she gives their son.

The catastrophe that seems always close at hand finally occurs: Russell sets fire to his own child. The second part of the novel is told primarily from John's perspective as he undergoes a prolonged, painful rehabilitation and tries to find meaning in these events. It is also the story of the plastic surgeon who attempts to restore John's horribly scarred body and who has come to doubt the purpose of his profession (there is nothing he can do about destructive family relationships and psychic scars). Russell, who has been brutalized in jail, is released, seeking redemption. Fire, significant throughout the story, plays a final shocking (redemptive?) role.

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Described as an autobiographical novel, this book is narrated in the first person and reads like a memoir. But it is a "memoir" charged with atmosphere, imagery, and longing. The narrator is an American woman, a mother of three children, and the wife of an academic. After an absence of 17 years she has returned to Niger--the country in northwestern Africa where she had lived with her three small children and husband, while the latter was completing his doctoral dissertation. Now she is visiting her oldest child, Zara, who has been living for the past two years in Niger, and working in a medical clinic.

As the narrator reacquaints herself with the culture and climate of the country, she re-visits--in memory--young motherhood, her relationship with the six-year-old Zara, and her interactions with the people and surroundings. The novel shifts back and forth between the past and the present Niger while the narrator attempts to integrate her experiences: she sees the country and her daughter through new eyes.

She is overwhelmed with guilt about what she calls her "inattention" (17 years ago) to the lives of the Nigerans around her; guilt about her failure to learn the native language; guilt toward her children, for her own self absorption. "After all, what was I doing the year we lived in Zinder [the city where they had lived]? That is the question that looms between Zara and me . . . Of what was I thinking? It is not enough to say that instead of working in a clinic [as Zara now does] I was spending my days with Lizzie and Tulu and herself. That doesn't answer it. All of Zinder waited beyond the gate." (71)

The narrator watches with admiration and envy as Zara interacts comfortably, even intimately, with the native women and their children, speaks the language fluently, and negotiates her way with self assurance in this foreign land. Not only does the narrator feel inept, she feels that she has "lost Zara to a world in which I am entirely a stranger." (73) Thus cultural dislocation becomes the trigger for intense reflections on the nature of parenthood, and the female experience of marriage, pregnancy, motherhood, and aging. These reflections are magnified by the narrator's loss of her own mother, who has recently died.

The native women that she meets through Zara help her to understand that some of these experiences transcend cultures, even though their surface manifestations may differ. For example, the often hyper-critical attitude toward first born children, and the refusal of native parents to even utter the name of the first born child relates to the shame associated with this evidence that the mother has lost her virginity. "Shame is the right word, exactly," thinks the narrator, "and I wonder now that I have not stumbled on this knowledge before." (77) But more than the "thorough and irrevocable . . . violation of the space around one's skin" it is the associated separation from the mother that the narrator recognizes as being at the core of sexual awakening; it is this inevitable separation from her own daughter that she is now trying to absorb.

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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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