A Chronicle of Living with a DisabilityIrving Kenneth Zola
, foreword by Nancy Mairs
The personal odyssey of a man with a disability, this passionate book tries to tell as well as analyze what it is like to have a disability in a world that values vigor and health. Zola writes,
"Missing Pieces is an unraveling of a social problem in the manner of Black Like Me. Like its author, I, too, am a trained social observer, but for me 'passing' was not an issue. For I already have the stigmata of the disabledthe braces, the limp, the canethough I have spent much of my life denying their existence."
The author started out in the role of a social scientist on a seven-day excursion to acquaint himself with an extraordinary experiment in livingHet Dorp, one of the few places in the world designed to promote "the optimum happiness" of those with severe physical disabilities. Neither a medial center nor a nursing home, Het Dorp is a village in the western-most part of the Netherlands. What began as a sociological attempt to describe this unusual setting became, through the author's growing awareness, what can only be called a socio-autobiography.
Resuming his prior dependence on a wheelchair, the author experienced his own transformation from someone who is "normal" and "valid" to someone who is "invalid." The routine of Het Dorp became his: he lived in an architecturally modified home, visited the workshops, and shared meals, social events, conversation, and perceptions with the remarkably diverse residents.
The author confronts some rarely discussed issuesthe self-image of a person with a chronic disability, how one fills one's time, how one deals with authority and dependence, and love and sex.
Missing Pieces offers striking insights into an aspect of the human condition shared by nearly 30 million Americans. It is must reading for the general reader, as well as for the rehabilitation counselor, social worker, or social scientist.
"(An) important addition to the growing literature... Missing Pieces is a fascinating and readable 'socioautobiography' that I had difficulty putting down." Paul J. Corcoran, The New England Journal of Medicine
"Full of insights about the experience of disability and chronic illness, it shows us a variety of social and cultural institutions through the eyes of those whom they exclude and deny. Such studies are all too rare in the sociology of health and illness. It tells not only Zola's own story but the story of handicapped people, disabled as much by society as by any fact of body and/or mind. It is a moving, powerful, and profoundly human examination not of "them" but of us all." Joseph W. Schneider, Contemporary Sociology
"Important and moving. We see a man grow whole as he discovers and accepts his particular limits and his complex limitlessness." Christina Robb, The Boston Globe
"An absorbing book that will sensitize and enlighten...Zola has paved the way in providing us with a rich, humane, and provocative account of disability in the modern world." Sol Levine, Qualitative Sociology
"Crisp and candid... full of compassion." David A. Buehler, Library Journal
"His account is delivered with humour, honesty, respect, and humility. It offers insights into the world of disability, but really tells the reader as much about the wider society and its difficulty to adjust the word to embrace the needs of disabled people." Disability and Society
"...a classic." Review of Disability Studies
"Today's college kids take identity politics and area studies for granted, but they only exist because of people like Zola. His sociological look inside an assisted living facility, first published in 1981, was a foundational text for the study of disability. And its re-release couldn't be more timely: It comes as the idea of politics organized around identity is increasingly considered obscene. Zola's exploration of what it means to live as an embodiment of the body's frailty in a culture that fetishizes perfect health reminds us of identity politics' relevance." City Limits