With his signature wit, twenty-something author, blogger, and entrepreneur Shane Burcaw is back with an essay collection about living a full life in a body that many people perceive as a tragedy. From anecdotes about first introductions where people patted him on the head instead of shaking his hand, to stories of passersby mistaking his able-bodied girlfriend for a nurse, Shane tackles awkward situations and assumptions with humor and grace.
In 1976, Gelya Frank began writing about the life of Diane DeVries, a woman born with all the physical and mental equipment she would need to live in our society--except arms and legs. Frank was 28 years old, DeVries 26. This remarkable book--by turns moving, funny, and revelatory--records the relationship that developed between the women over the next twenty years. An empathic listener and participant in DeVries's life, and a scholar of the feminist and disability rights movements, Frank argues that Diane DeVries is a perfect example of an American woman coming of age in the second half of the twentieth century. By addressing the dynamics of power in ethnographic representation, Frank--anthropology's leading expert on life history and life story methods--lays the critical groundwork for a new genre, "cultural biography."
My Wonderful Life as a Vegetable shares the story Birger Bergmann and his zeal for life. After developing the incurable degenerative neurological disease amyotrophic lateral schlerosis—also known as Lou Gehrig’s Disease—Birger became fiercely determined to educate other ALS patients and their families. My Wonderful Life as a Vegetable raises valuable ethical dilemmas including the question of whether governments have the right to deny life-saving medical equipment when costs become exorbitant. As a resident of Denmark, Birger was given access to a mechanical ventilator, a machine that has kept him alive for more than ten years. When Birger learns of Johan, a young Swedish father of two who may die without the same technology, Birger travels to Sweden to encourage him to be more proactive in soliciting the medical community’s help. Birger also persuades Susannah, a grandmother suffering from ALS to undergo lifesaving procedures. My Wonderful Life as a Vegetable offers a meaningful example of someone who sees life for its opportunities, rather than its difficulties.
One Little Finger is the story of Malini Chib′s search for independence and identity, and her zeal to live a full, meaningful life despite lifelong disability. Malini has Cerebral Palsy, a neurological condition similar to adult stroke, which makes body movement and speech extremely difficult. However, the cognitive functions of brain can often remain unimpaired, as in the case of Malini. She recounts her experiences from childhood to adulthood, her struggles with motor skills and speech, managing day-to-day activities, and the apathy and indifference of people towards her and others who are disabled. She educates herself, learns to type with her little finger and speak through the Lightwriter. Finally, she works through unfavourable social systems and attitudes to get a career as an event manager.
The twenty-five luminous and intensely personal essays in this collection are, like Andre Dubus's celebrated short stories, a testament to the author's vulnerability, vision, and indestructible faith. Since losing one leg and the use of the other in a 1986 accident, Dubus has experienced despair, learned acceptance, and, finally, found joy in the sacramental magic of even the most quotidian tasks. Whether he is writing of the relationship with his father, the rape of his beloved sister, his Catholic faith, the suicide of a gay naval officer, his admiration for fellow writers like Hemingway and Mailer, or the simple act of making sandwiches for his daughters' lunchboxes, Dubus cuts straight to the heart of things. Here we have a master at the height of his powers, an artist whose work "is suffused with grace, bathed in a kind of spiritual glow" (The New York Times Book Review).