A SCHOLARLY BOOK REPOSITORY13 start with P start with P
The search for a “patient zero”—popularly understood to be the first person infected in an epidemic—has been key to media coverage of major infectious disease outbreaks for more than three decades. Yet the term itself did not exist before the emergence of the HIV/AIDS epidemic in the 1980s. How did this idea so swiftly come to exert such a strong grip on the scientific, media, and popular consciousness? In Patient Zero, Richard A. McKay interprets a wealth of archival sources and interviews to demonstrate how this seemingly new concept drew upon centuries-old ideas—and fears—about contagion and social disorder.
McKay presents a carefully documented and sensitively written account of the life of Gaétan Dugas, a gay man whose skin cancer diagnosis in 1980 took on very different meanings as the HIV/AIDS epidemic developed—and who received widespread posthumous infamy when he was incorrectly identified as patient zero of the North American outbreak. McKay shows how investigators from the US Centers for Disease Control inadvertently created the term amid their early research into the emerging health crisis; how an ambitious journalist dramatically amplified the idea in his determination to reframe national debates about AIDS; and how many individuals grappled with the notion of patient zero—adopting, challenging and redirecting its powerful meanings—as they tried to make sense of and respond to the first fifteen years of an unfolding epidemic. With important insights for our interconnected age, Patient Zero untangles the complex process by which individuals and groups create meaning and allocate blame when faced with new disease threats. What McKay gives us here is myth-smashing revisionist history at its best.
We all have a good idea of how we want things to go when we visit a physician. We expect to be able to explain why we are there, and we hope the physician will listen and possibly ask questions that help us clarify our thoughts. Most of us hope that the physician will provide some expression of empathy, offer a clear, nontechnical assessment of our problem, and describe "next steps" in a way that is easy to understand. Ideally, we would like to be asked about our ability to follow treatment recommendations. Some experts say that these expectations are not only reasonable but even necessary if patients are to get the care they need. Yet there is a growing body of research that suggests the reality of physician communication with patients often falls short of this ideal in many respects.
A careful analysis of the findings of this research can provide guidance to physician educators, health care administrators, and health policy makers interested in understanding the role that improved physician communication can play in improving quality of care and patient outcomes. Physician Communication with Patients summarizes findings from the academic literature pertaining to various aspects of this question, discussing those findings in the context of current pressures for change in the organization and delivery of medical services.
In a series of unflinching vignettes laced with heartbreak and often with humor, Places in the Bone gives an unforgettable account of loss and survival, childhood secrets banished from memory, and the power of language to retrieve the missing parts of oneself and one’s past. Woven together with unmistakable lyricism, Carol Dine’s narrative moves back and forth in time and place—from the childhood bedroom that fills her with fear, to a hospital room after her surgery for breast cancer, to an adobe hut in a New Mexico artists’ colony where she escapes and finds her voice.
This voice, it turns out, is a chorus—a harmony of cries, both anguished and triumphant. Among them we hear a young girl speak about the abuse by her father; we hear the tormented reflections of a mother who, for several years after a divorce, loses contact with her young son; and we hear the testimony of a cancer survivor. Through it all, we feel the determination, courage, and creativity of a woman who has spent more than two decades confronting her past, her body, and her identity. Despite her struggles, Dine finds positive influences in her life, including her mentor, Anne Sexton, who recognizes the fire in her words, and Stanley Kunitz, whose indomitable spirit provides enduring inspiration.
More than a story of personal loss, the memoir moves us with its humanity, its unnerving wit, and its defiant faith. As the fragments come together, we experience Dine’s joy in living and her reconciliation with the past that allow her to renew bonds with her son, her sister, and her mother. In page after page, we witness the power of art to refigure a body, to transform suffering, and ultimately, to redeem.
It was not long ago that scientists proclaimed victory over polio, the dread disease of the 1950s. More recently polio resurfaced, not conquered at all, spreading across the countries of Africa. As we once again face the specter of this disease, along with other killers like AIDS and SARS, this powerful book reminds us of the personal cost, the cultural implications, and the historical significance of one of modern humanity's deadliest biological enemies. In Polio and Its Aftermath Marc Shell, himself a victim of polio, offers an inspired analysis of the disease. Part memoir, part cultural criticism and history, part meditation on the meaning of disease, Shell's work combines the understanding of a medical researcher with the sensitivity of a literary critic. He deftly draws a detailed yet broad picture of the lived experience of a crippling disease as it makes it way into every facet of human existence.
Polio and Its Aftermath conveys the widespread panic that struck as the disease swept the world in the mid-fifties. It captures an atmosphere in which polio vied with the Cold War as the greatest cause of unrest in North America--and in which a strange and often debilitating uncertainty was one of the disease's salient but least treatable symptoms. Polio particularly afflicted the young, and Shell explores what this meant to families and communities. And he reveals why, in spite of the worldwide relief that greeted Jonas Salk's vaccine as a miracle of modern science, we have much more to fear from polio now than we know.
In The Political Economy of Stigma, Ally Day offers a compelling critique of neoliberal medical practices in the US by coupling an analysis of HIV memoir with a critical examination of narrative medicine practice. Using insights from feminist disability studies and crip theory, Day argues that stories of illness and disability—such as HIV memoirs—operate within a political economy of stigma, which she defines as the formal and informal circulation of personal illness and disability narratives that benefits some while hindering others. On the one hand, this system decreases access to appropriate medical care for those with chronic conditions by producing narratives of personal illness that frame one’s relationship to structural inequality as a result of personal failure. On the other hand, the political economy of stigma rewards those who procure such narratives and circulate them for public consumption.
The political economy of stigma is theorized from three primary research sites: a reading group with women living with HIV, a reading group with AIDS service workers, and participant observation research and critical close reading of practices in narrative medicine. Ultimately, it is the women living with HIV who provide an alternative way to understand disability and illness narratives, a practice of differential reading that can challenge stigmatizing tropes and reconceptualize the creation, reception, and circulation of patient memoir.
For most people, a diagnosis of cystic fibrosis means the certainty of a life ended too soon. But for twin girls with the disease, what began as a family’s stubborn determination grew into a miracle.
The tragedy of CF has been touchingly recounted in such books as Frank Deford’s Alex: The Life of a Child, but The Power of Two is the first book to portray the symbiotic relationship between twins who share this life-threatening disease through adulthood. Isabel Stenzel Byrnes and Anabel Stenzel tell of their lifelong struggle to pursue normal lives with cystic fibrosis while grappling with the realization that they will die young. Their story reflects the physical and emotional challenges of a particularly aggressive form of CF and tells how the twins’ bicultural heritage—Japanese and German—influenced the way they coped with these challenges.
Born in 1972, seventeen years before scientists discovered the genetic mutation that causes CF, Isabel and Anabel endured the daily regimen of chest percussion, frequent doctor visits, and lengthy hospitalizations. But they tell how, in the face of innumerable setbacks, their deep-seated dependence on each other allowed them to survive long enough to reap the benefits of the miraculous lung transplants that marked a crossroads in their lives: “We have an old life—one of growing up with chronic illness—and a new life—one of opportunities and gifts we have never imagined before.” In this memoir, they pay tribute to the people who shaped their experience.
The Power of Two is an honest and gripping portrayal of day-to-day health care, the impact of chronic illness on marriage and family, and the importance of a support network to continuing survival. It conveys an important message to both popular and professional readers as it addresses key psychosocial issues in chronic illness throughout the sufferer’s lifespan and illuminates the human side of advances in biotechnology.
Even as gene therapy and stem cell research increase the chances for eradicating CF, this stirring account portrays its effects on one family that refused to give up. These two remarkable sisters have much to teach about the power of perseverance—and about the ultimate power of hope.
Until February 15, 2001, Howard Reich’s mother, Sonia, had managed to keep almost everything about her experience of the Holocaust from her son. That night, she packed some clothes and fled her house in Skokie, Illinois, convinced that someone was trying to kill her. This was the first indication that she was suffering from late-onset post traumatic stress disorder, a little-known condition that can emerge decades after the initial trauma. For Howard, it was also the opening of a window onto his mother’s past.
In Prisoner of Her Past, Howard Reich has written a moving memoir about growing up as the child of Holocaust survivors and finding refuge from silence and fear in the world of jazz. It is only when Sonia’s memories overwhelm her and Howard begins to piece together her story that he comes to understand how his parents’ lives shaped his own. The paperback edition includes an epilogue by the author that relates developments since the publication of the cloth edition.
To promote and ensure consumer protection in an increasingly adversarial and complicated health-care culture, Kinney first analyzes the procedures by which consumer concerns are presently discerned and resolved and then explains why these systems are unsatisfactory. She also discusses problematic procedures for making coverage policy and quality standards and proposes reforms in a variety of processes that would enable all consumers, including the uninsured, to influence key policies and standards and also to raise concerns and obtain appropriate remedies.
As the first comprehensive treatment of administrative procedures in American health plans and other such institutions, Protecting American Health Care Consumers will be welcomed by state and federal policymakers, managed care executives, and lawyers charged with designing and implementing protections for consumers in public and private health plans.
• Two weeks after Johnny Moore was discharged from a psychiatric hospital, the deeply troubled teenager took a lethal overdose of the antidepressant prescribed by his psychiatrist.
• Dennis Gould suffered from paranoid schizophrenia. He let a streetcar cut off his right arm rather than carry out his divine mission to kill his ex-girlfriend, Shelley Rotman; three years later––while under psychiatric care and after several hospitalizations––Gould stabbed the young woman to death with his left arm.
• After seven months of psychotherapy as his only treatment in a private psychiatric hospital, Raphael Osheroff’s symptoms of the agitated depression that had destroyed his medical practice and personal life were more severe than ever. At a second hospital, Osheroff was given the antidepressant drugs he had been asking for––and he rapidly improved.
• Joan Barkley went to Dr. Jonathan Fox for help in overcoming her addiction to Darvon. After a year of therapy, the twice-weekly sessions turned into intense sexual encounters, which continued for two years.
James Kelley tells the true stories of people who sought help from psychiatrists and ended up suing them for malpractice. These tales are compelling, tragic, and sometimes bizarre. They offer a unique view into a relationship that is normally confidential and caring––but can be catastrophic when it goes wrong. Kelley discusses several cases that received national attention: former Reagan administration press secretary James Brady's suit against the psychiatrist who had been treating John Hinckley; the Tarasoff decision that established the psychiatrist’s duty to warn potential victims of a patient’s threats; and the disciplinary proceedings against Dr. Margaret Bean-Bayog for her unusual “mothering” treatment of Paul Lozano.
Kelley accompanies detailed accounts of courtroom clashes––based on court records––with clear, even-handed treatments of four kinds of psychiatric malpractice cases: a patient’s suicide, a patient’s violence against other people, a psychotherapist's sexual misconduct, and the use of unconventional treatments. With a wealth of examples, he explains the role of psychiatrists as expert witnesses against each other, the difficulties of predicting the outcomes of these suits, and the balances psychiatrists and judges have to strike between the duties owed to patients, on the one hand, and to society on the other.
Whether you identify with the patients or the psychiatrists, you will find these tales unforgettable. Kelley writes in nontechnical language for the general reader, stressing the human elements. His lucid analyses of key, current issues make his book essential reading for professionals in mental health or law––and for anyone contemplating a malpractice suit.
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