Showing 141 - 150 of 264 annotations tagged with the keyword "Illness Narrative/Pathography"

Annotated by:
Bertman, Sandra

Primary Category: Performing Arts / Film, TV, Video

Genre: Video

Summary:

West coast dancer John Henry made his life the subject of his final performance. Choreographer Bromberg and film maker Rosenberg collaborate with Henry in the creation of a work for the theatre based on his desire to leave an autobiographic legacy. Filmed during the last few years of Henry's life with HIV/AIDS, the documentary examines the image of self as one individual prepares to separate from body and personhood, and continues after his death.

View full annotation

Annotated by:
Garden, Rebecca

Primary Category: Literature / Nonfiction

Genre: Autobiography

Summary:

This is the first of several autobiographies written by Donna Williams. In this she describes her earliest memories and experiences of being autistic through to her late twenties and the writing of the autobiography itself. Her account begins with descriptions of personality characteristics understood to be typical of people with autism. Contrasting her highly visual nature--a fascination with patterns and color and seen or imagined spots of light--with her difficulty understanding language and formulating it, Williams’s narrative is an account of neurological difference within a family that responded to it with impatience, anger, and violence.

She describes her fear of other people and how she learned to communicate primarily through objects, attaching to things and their symbolic meanings more easily than to people and language. As a means of managing her fear of people and her encounters with sometimes abusive family members and partners, Williams developed alternative personalities. She would perform those different personalities when she wanted to socialize or if she needed to protect herself. Williams develops relationships, some exploitative and some comforting to her, and finds ways to do well in aspects of school and work. The autobiography ends with a discussion of her first draft of the narrative itself providing a means for diagnosis. Initially thinking she has schizophrenia, Williams experiences a revelation when she realizes she is autistic.

View full annotation

The Forbidden Woman

Mokeddem, Malika

Last Updated: Feb-15-2007
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Sultana, a doctor who escaped her illiterate nomadic background to study and work in France, returns to her native Algeria when she hears of the death of her former lover and fellow physician, Yacine. She is treated with hostility, but defiantly stays in Yacine’s place at the clinic. Vincent, a Frenchman who is the baffled recipient of a perfectly matched kidney from a young Algerian woman, travels to the desert to explore the culture of this unknown person whose death has brought him back to life.

Sultana and Vincent meet through their common friendship with the furtive, questioning children, Dalila and Alilou. Vincent and Salah, Yasmine’s best friend, both fall in love with Sultana, but she seems indifferent to them. The violence and suspicion of the town leaders causes her to regress into anorexia and mutism, during which she is tormented by the horrible memory of the loss of her parents. Her three male friends and the village women help her to recover a sense of self worth, but she must flee when the leaders set fire to their dwellings. A glimmer of optimism can be found in the aspirations of the children and the solidarity of the women.

View full annotation

Common Threads

Epstein, Robert; Friedman, Jeffrey

Last Updated: Feb-14-2007
Annotated by:
Duffin, Jacalyn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

This documentary film is narrated by Dustin Hoffman; all other characters play themselves. Five stories (pathographies) introduced as panels from the 14-acre AIDS quilt are interwoven with each other, together with personal photos, newsreels and radio reports to recount the history of the first decade of AIDS in the United States.

Tom was a highly educated and athletic, gay man whose story is told by his lesbian friend and co-parent of his adored little daughter. Rob was a married Afro-American, I.V.-drug-user whose loving wife recounts his battle with drugs as well as his disease and who views her own HIV seropositivity as "God’s will." Jeff’s story is told by his grieving male lover over images of his once golden health.

The parents of twelve-year-old hemophiliac, David, tell the story of his entire life as a rush to consume, from his babyhood forward until the sadness of his last Christmas. The shy, handsome architect, David, is mourned by his bisexual lover, a naval officer at the Pentagon, who now lies dying with the lesions of Kaposi’s sarcoma quite visible on his face.

The narrators describe solace they derived from quilting memorial panels for their loved ones. In the final scene, the AIDS quilt lies on the Mall in Washington as names of hundreds of loved ones are read by grieving families and friends.

View full annotation

Annotated by:
Clark, Stephanie Brown

Primary Category: Literature / Nonfiction

Genre: Handbook

Summary:

As the two physician-authors suggest, this book is kind of a primer for medical educators who plan to integrate medial humanities materials and approaches into curricula for healthcare providers and trainees. It is a "how-to" manual for teaching medical humanities content to clinicians.

The book's Introduction asks "why use the arts In medical education?" and identifies their utility in understanding the patient's unique and personal experience of illness, and the effects of  patients' social locations and psychological responses to their disease and to the healthcare professionals who care for them. And further, the arts offer a way for healthcare professionals to explore and reflect emotionally on their personal interactions with patients, to think creatively and practice empathetically.

The next chapter provides a model of "how to teach the arts" using a non-didactic, interactive approach as a series of questions around the work of art. Illustrative examples are included at each step. In the subsequent chapters, each focuses on an individual art forms-- literature, visual art, sculpture, photographs, music and drama-- with specific examples, exercises and activities for learners that have been piloted by the authors. For the music chapter, a CD with examples is included.

View full annotation

Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This story of love and marriage under the shadow of AIDS travels a couple's unlikely journey from meeting to courtship to disclosure of the male partner's AIDS, through a subsequent breakup, then a decision to marry, and four years of almost inexplicably happy marriage dogged from the beginning by the specter of death.

Over this time the couple has a chance to explore their respective understandings of the life of the spirit and for Hyung Goo to entertain and reject a number of avenues of comfort before joining his wife, a Presbyterian theologian and seminary professor, in her faith. Much of their short life together is lived in the context of intersecting circles of medical people and church community, in both of which they are active participants whose challenging marriage becomes a mirror and a lamp to their cohort.

View full annotation

Love in the Driest Season

Tucker, Neely

Last Updated: Dec-14-2006
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Neely Tucker, a white journalist from Mississippi on assignment to Zimbabwe, and his wife, Vita, an African American from Detroit, volunteer to spend time with orphaned and abandoned children, many victims of the desperation caused by AIDS. In the orphanage, where a distressing number of children die due to lack of medicines or basic materials, or lack of adequate staff training, they come upon and find themselves deeply drawn to a particularly tiny, sick, vulnerable baby, abandoned in the desert. The director of the orphanage picks a name for her as she does for the other orphans: Chipo.

The Tuckers arrange to take her home, first for weekend care visits, hoping thereafter to do a more permanent foster care arrangement and then adopt her. A long story of struggle with Zimbabwean bureaucracy ensues, through which one learns much about suspicion of white Americans who want children, the ways in which child care becomes one more issue in partisan politics, and how abandoned children are caught in adults’ power struggles. Interspersed with this moving story are brief accounts of sometimes harrowing trips to other parts of Africa, including sites of major warfare in Rwanda and Uganda.

Tucker also intersperses memories of encounters with families in Bosnia during his work there. Ultimately, and only after much persistence, empathetic individuals in the system, and some newly learned under-the-table skills, the adoption papers come through and the family makes its way back to American where Tucker begins his ongoing assignment at the Washington Post.

View full annotation

Annotated by:
Stanford, Ann Folwell

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

South African lawyer and leading member of the ANC (African National Congress) during the tumultuous 70s and 80s, lost an arm, sight in one eye, and suffered hearing loss and diminished use of his legs when the bomb planted in his car exploded on April 7, 1988. This book chronicles the accident, his long recovery in a hospital and rehabilitation unit, and the process of re-entering life and politics after such a harrowing experience.

Sachs connects his personal recovery with the emergence of an apartheid-free South Africa and tells his individual story within the context of political struggle. The 2000 edition includes a forward by Desmond Tutu, an introduction by Nancy Scheper-Hughes, and a new epilogue by Sachs.

View full annotation

Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Subtitled "My Journey through Autism," Prince-Hughes's memoir leads the reader through a poetic, at times mystical, journey from "being a wild thing out of context" (1) to finding a way to understand the world and live "in context" (11). The author, an anthropologist, has Asperger's syndrome. Prince-Hughes explains that Asperger's is a form of autism in which the individual develops "age-appropriate" language and cognitive skills as well as "self-help skills" and curiosity about the environment but has marked difficulties with social interaction and shows the obsessive, ritualistic behavior similar to other autistic individuals.

As the author relates, her poor social skills, discomfort with physical closeness, sensory sensitivities (to touch and odors for example) and other odd behaviors annoyed her instructors and triggered taunts and even physical abuse from classmates and acquaintances. She describes her misery one such day when she was confronted by an impatient teacher: "I often couldn't take in people as whole entities, even when I was relatively relaxed . . . I was caught in a whirlwind of horrible sensory information and unrelenting criticism" (43).

Getting through each day was filled with emotional pain and suffering, and required a tremendous expenditure of energy in usually unsuccessful attempts to "fit in." Complicating her social isolation was the gradual recognition that her adolescent sexuality was somewhat blunted or, if anything, inclined toward lesbianism. She began drinking (alcohol) in the seventh grade. At 16 she left school and home, embarking on a long period of alcoholism, drug dependence, a "hippie" lifestyle and outright homelessness.

Prince-Hughes had always found refuge in nature, but later she also took pleasure in the physical activity of dancing, becoming a club performer in Seattle. During time off one day, she packed lunch and ate it at the zoo. She spent three hours watching the gorillas. "It was so subtle and steady that I felt like I was watching people for the first time in my whole life . . . Free from acting, free from the oppression that comes with brash and bold sound, blinding stares and uncomfortable closeness that mark the talk of human people. In contrast, these people spoke softly, their bodies poetic, their faces and dance poetic, spinning conversations out of the moisture and perfume, out of the ground and out of the past. They were like me" (93).

Thus began the author's profound relationship and identification with gorillas, an interaction that changed her life, resulting eventually in scholarly work and a Ph.D. in interdisciplinary anthropology, a faculty appointment, and gradual understanding of her own neuroatypical condition, not diagnosed as Asperger's until she was 36 years old.

View full annotation

My Body Politic

Linton, Simi

Last Updated: Dec-06-2006
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

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."

View full annotation