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From There to Here: Stories of Adjustment to Spinal Cord Injury.

Comforting, empowering, disappointing

By William J. Peace

From There to Here: Stories of Adjustment to Spinal Cord Injury, by Gary Karp (Editor), Stanley D. Klein (Editor). No Limits Communications (March, 2004). Softbound, 271 pages, $18.95.

I'D BEEN LOOKING FORWARD TO the publication of Gary Karp's From There to Here.

Last year I had seen ads on the internet and in New Mobility asking spinal cord injured people for submissions about how their life had changed as a result of spinal cord injury. The call for essays was narrowly focused: how do spinal cord injured people get from "there," meaning the point of injury to "here," their current circumstances of life. I considered writing an essay but hesitated to do so given what I considered the conservative and religious editorial viewpoints of the places I'd seen the announcements.

After reading From There to Here, I feel I made a wise decision. The book consists entirely of essays which fall into the "insightful," "inspirational" "and comforting" category, reinforcing stereotypes of disability as a tragedy that needs to be overcome.

Two diverse audiences will have opposite reactions to the book, I think: Committed disability rights activists and those interested in the social significance of disability will find little of value in From There to Here. The 45 contributions that make up the text consist of 3- to 6-page autobiographical essays about how disability changed an individual's life. Each essay states and restates what is already well known -- that unemployment among disabled people is rampant, discrimination common, the lack of adequate transportation and housing appalling, and the social stigma associated with disability overwhelming. The vast majority of essays are too superficial, but given that the editors chose so many contributors, one can hardly expect a more nuanced view of disability. Those who know little about disability, or those who have sustained a spinal cord injury recently, though, may find the text interesting and enlightening. Even the most resistant reader will not be able to deny that the social impact disability has on one's life is profound.

I found that the essays blurred together, that one story sounded identical to another and wondered why a medical model of disability was accepted without question -- until I saw the "Word from our Sponsor" at the start of the book. It troubles me that a grant from Independence Technology, a Johnson & Johnson Company, sponsored the book's publication.

Readers familiar with the problems disabled people encounter accessing adequate health care and insurance will cringe when they read Johnson & Johnson's "Word": the book, says the company, "reflects our vision as a partner and advocate of people with disabilities and our mission to provide products and services that increase their independence"; it shares "a longstanding belief that our first responsibility is to be of service to health care professionals, nurses, consumers, mothers, fathers, and all others who use our products." Maybe this pabulum makes the Johnson & Johnson company feel good but does not reflect reality as disabled people know it. Johnson & Johnson is not a charity or nonprofit organization, but a giant multinational corporation whose primary function is to make money. And the company clearly sees disability as a medical problem.

From There to Here will appeal to those in the medical profession who deal with spinal cord injury on a regular basis. But the book's real market is the families of recently paralyzed people and those who are coping with the immediate impact of a spinal cord injury. Reading essays from disabled individuals of diverse ages, social status and type of disability will likely empower readers who are in the midst of dealing with a spinal cord injury that seems totally overwhelming physically and emotionally, and so it does meet the mission of the National Spinal Cord Injury Association -- "to educate and empower survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health, and personal fulfillment," as NSCIA Director Marcie Roth writes in a brief Foreword. I know that the book would certainly have helped me at the time of injury. Reading it then, I would not have felt so alone. And though the contributors stress repeatedly that they're not superstars, martyrs, or heroes, I sincerely doubt these readers will share this view. It is simply too easy to accept the dominant socio-cultural norms associated with disability -- especially for those unfamiliar with the social consequences of a disability.

Yet as a longtime survivor of spinal cord injury, I'm disappointed in the book. Like many of the contributors, I have spent much of my life wondering about the nature of disability in American society. I remain perplexed as to the reasons why we are still the most underrepresented and disenfranchised minority group in the United States. This fact is not well known and is the key to equality and justice for disabled Americans. Regardless of when, where, and how one became disabled we all share the same social standing. Given this, I think From There to Here as a missed opportunity, one that could have enlightened readers and been an important contribution to disability rights understanding.

Posted Jan. 10, 2005

William J. Peace's most recent article for Ragged Edge is 26.2 Miles of Trouble.

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