When Carolyn Ellis, a graduate student, and Gene Weinstein, her Professor, fell in love, he was experiencing the first stages of emphysema. As he became increasingly disabled and immobile, these two intensely connected partners fought to maintain their love and to live a meaningful life. They learned to negotiate their daily lives in a way that enabled each of them to feel sufficiently autonomous—him not always like a patient and her not always like a caretaker. Writing as a sociologist, Ellis protrays their life together as a way to understand the complexities of romance, of living with a progressive illness, and, in the final negotiation and reversal of positions, of coping with the loss of a loved one.
This rare memoir full of often raw details and emotions becomes an intimate conversation about the intricacies of feeling and relating in a relationship. What Ellis calls experimental ethnography is a finely crafted, forthright, and daring story framed by the author's reflections on writing about and analyzing one's own life. Casting off the safe distance of most social science inquiry, she surrenders the private shroud of a complex relationship to bring sociology closer to literature.
Illness provides a mirror that allows sufferers to see themselves and to become more introspective. As they struggle for control over illness and control over time, they also struggle to control the central images of the self. For example, the chronically ill may situate their self-concepts in the past, present, or future. Charmaz examines under what conditions they situate their self-concepts in each of those timeframes. People may say they live one day at a time. They may bracket certain experiences, such as a heart attack, as timemarkers or turning points in the past. Or they may look ahead to recovering their health. Or ahead to death.
Charmaz artfully combines near jargon-free analysis with moving stories about how people have experienced illness, usually told in the sufferers' own words. She enters the world of the chronically ill, and brings us into it.
For children who live with a chronic illness, each day is filled with endless treatments, painful symptoms, confusion, and embarrassment. How can an eight-year old girl understand diabetes let alone explain to her schoolmates why she has to leave class to have her blood tested? How can the father of a child with asthma ever sleep soundly through the night with the fear that his son may suffocate in the next room.
In In Sickness and in Play, Cindy Dell Clark tells the stories of children who suffer from two common illnesses that are often underestimated by those not directly touched by them—asthma and diabetes. She describes how play, humor, and other expressive methods, invented by the kids themselves, allow families to cope with the pain. Clark’s work is one of the few studies to focus on maladies that kids must learn to live with rather than die from. Her interviews with forty-six families give readers an understanding of how children comprehend their illnesses and how parents struggle daily to care for their kids while trying to give them a “normal” childhood. Chronically ill children are at a greater risk of developing mental health or social adjustment problems than their peers, and asthma has been gaining ground in both incidence and fatality in recent years. Clark’s eye-opening work emphasizes the importance of improving the lives of these kids by understanding their perspectives, both imagined and real.
In Sickness and in Play is part of the Rutgers Series in Childhood Studies edited by Myra Bluebond-Langer.
Once associated only with the wealthy and privileged in Latin America, lifelong illnesses are now emerging among a wider cross section of the population as an unfortunate consequence of growing urbanization and increased life expectancy. One of these diseases is the chronic autoimmune disorder lupus erythematosus. Difficult to diagnose and harder still to effectively manage, lupus challenges the very foundations of women’s lives, their real and imagined futures, and their carefully constructed gendered identities. While the illness is validated by medical science, it is poorly understood by women, their families, and their communities, which creates multiple tensions as women attempt to make sense of an unpredictable, expensive, and culturally suspect medically managed illness.
Living with Lupus vividly chronicles the struggles of Ecuadorian women as they come to terms with the experience of debilitating chronic illness. Drawing on years of ethnographic research, Ann Miles sensitively portrays the experiences and stories of Ecuadorian women who suffer with the intractable and stigmatizing disease. She uses in-depth case histories, rich in ethnographic detail, to explore not only how chronic illness can tear at the seams of women’s precarious lives, but also how meanings are reconfigured when a biomedical illness category moves across a cultural landscape. One of the few books that deals with the meanings and experiences of chronic illness in the developing world, Living with Lupus contributes to our understanding of a significant global health transition.
Erectile dysfunction treatments like Viagra are popular in Mexico, where stereotypes of men as sex-obsessed "machos" persist. However, most of the men Wentzell interviewed saw erectile difficulty as a chance to demonstrate difference from this stereotype. Rather than using drugs to continue youthful sex lives, many collaborated with wives and physicians to frame erectile difficulty as a prompt to embody age-appropriate, mature masculinities.
Engaging interdisciplinary conversations from the rhetoric of health and medicine, disability studies, narrative medicine, and sociology, Kessler takes an innovative look at how stigma functions on individual, interpersonal, and societal levels. In doing so, Kessler reveals how stories and lived experiences have much to teach us not only about how stigma functions but also about how it can be dismantled.
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