Resource Center - Rehabilitation Institute of Chicago

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Resource Center

The Donnelley Ethics Program has a unique collection of books and videos on topics related to disability ethics, clinical ethics and research ethics. The library, located on the ground floor of the Rehabilitation Institute of Chicago's (RIC) Superior Street hospital, is open to employees, patients, families, NU staff, students and visitors. The book collection is catalogued through the Northwestern University Galter Health Science Library. RIC employees and NU faculty/students may borrow books and videos from the collection for personal use and educational purposes.

The collection includes many first person narratives about the lived-experience of disability, such as:

The Diving Bell and the Butterfly by Jean-Dominique Bauby

"The Diving Bell and

the Butterfly"

by Jean-Dominique Bauby

"In 1995, Jean-Dominiqu Bauby was the editor in chief of French Elle, the father of two young children, a 43 year old man known and loved for his wit, his style, and his impassioned approach to life. By the end of the year he also sustained a rare kind of stroke to the brain stem. After twenty days in a coma, Bauby awoke in a body that had all but stopped working: only his left eye functioned, allowing him to see and, by blinking, to make clear that his mind was unimpaired. Almost miraculously, he was soon able to express himself in the richest detail, blinking to select letters one by one as a special alphabet was slowly recited to him, over and over again. In the same way, he was eventually able to compose this extraordinary book."


From the book jacket

How I Became a Human Being by Mark O'Brien 

"How I Became a

Human Being"

by Mark O'Brien

"In 1955, [Mark O'Brien] contracted polio and became permanently paralyzed from the neck down. O'Brien describes his childhood without the use of his limbs, his adolescence struggling with physical rehabilitation and suffering the bureaucracy of hospitals and institutions, and his adult life as an independent student and writer. Despite his weak physical state, O'Brien attended graduate school, explored poetry, and worked as a journalist...O'Brien's story does not beg for sympathy. It is rather a day-to-day account of his reality -- the life he crafted and maintained with a good mind, hired attendants, decent legislation for disabled people in California, and support from the University of California at Berkeley."

From the book jacket

Life As We Know It by Michael Berube

"Life As We Know It"

by Michael Berube

"In telling the story of his son's development during the crucial first four years of life-- learning to walk and talk, to move into the world and the lives of those around him -- Michael Berube engages the charged issues that each stage of Jame's growth leads into: I.Q. Testing, the politics of education, disability law, social services, health care, and entitlements. Framing these issues is the larger debate, which Berube brilliantly illuminates, over concepts such as social justice, what it means to be human, and, ultimately, what kind of society we value and by what means we determine it."

From the book jacket

Over My Head by Claudia L. Osborn 

"Over My Head"

by Claudia L. Osborn

"This book is... an attempt to provide insight into what happens when the neural pathways in the brain are damaged and the most sophisticated computer in the universe goes awry. I hope to show the effect head injury has on behavior and personality, and how thinking and problem-solving ability can be so altered that the simplest actions require extraordinary conscious effort. My purpose is to forever change the way you see someone you love, know, or employ who has experienced a brain injury. We are different, we know it, and we would give much to have the dimensions of that loss understood, and thereby bridge the chasm between those of you who have not had this experience and those of us who have."

From the author's note

Babyface by Jeanne McDermott

"Babyface"

by Jeanne McDermott

"Loving Nathaniel demanded a whole new way of seeing, not simply him and others, but ourselves, writes Jeanne McDermott... Nathaniel -- her second child -- was born with Apert syndrome, a genetic craniofacial condition that results in a towering skull, a sunken face, and fingers webbed so tightly that hands look like mittens....McDermott masterfully balances her dual roles as science journalist and mother to share her family's singular experience, while showing, paradoxically, how a child with a rare syndrome illuminates universal truths about the human condition....a remarkable look at a child, a family, and life on the outskirts of normal."

From the book jacket

 

"Aidan's Way"

by George T. Crane

and Sam Crane

"Aidan’s crisis had liberated me in a way. We had come close to death, had looked over the edge of the precipice, and then moved back. He would die at some point, perhaps young, maybe very young. He was profoundly disabled, even more so than he had been before. But his near-death had altered my vision. The length of his life or the physical particulars of his life were not as important as the mere fact of his life itself. He was following along in his own season, moving on the currents of the Way...."

Excerpt from the book

Where's the Mango Princess? by Cathy Crimmins

"Where's the Mango Princess?"

by Cathy Crimmins

"From the frustrations of dealing with doctors ("The first doctor, whom we call Dr. Asshole, swooped down from the great Neurosurgery in the Sky to tell me he has nothing to tell me") and insurance plans ("You know what our HMO's brain surgery plan is? They give your wife a Black & Decker drill and an instruction booklet") to the enigmas of personality, mortality and modern science, Where Is the Mango Princess? is a chronicle of an unforgettable transformation. Crimmins's story is full of the unexpected and hard-won wisdom: a reminder of the precariousness of health of fortune, of life itself...."

From the book jacket