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Personal Essays On Disability



Paul Longmore (2003). Why I Burned My Book and Other Essays on Disability. Philadelphia, PA: Temple University Press. Paperback, 278 pages, $22.95

Reviewed by Bonnie O'Day

Why I Burned My Book and Other Essays on Disability, by Paul K. Longmore presents an overview of almost a century of disability issues and activism. Beginning with a foreword by Robert Davidoff, the book contains four units, including "Analysis and Reconstruction"," Images and Reflections"," Ethics and Advocacy", and "Protests and Forecasts." The sections provide a historical perspective on disability, a discussion of media portrayals, an exploration of assisted suicide, and a look at the movement's evolution.

Why I Burned My Book truly brings the last century of the disability civil rights movement alive! Long time followers of Dr. Longmore's writings will be pleased to find his essays--mostly written during the 1980s and 1990s and many out of print--gathered into one easily accessible, very readable volume. Beginning students of disability studies will find this a wonderful introduction to the field and Dr. Longmore's work. Because each essay was written to stand on its own, there is some repetition in the essays. But most of the issues Longmore discusses are still relevant today and each essay contains new insights that many readers will find fresh and interesting.

Dr. Davidoff's "Foreword" asks why we still see disability as such a frightening subject, asserting that it challenges our beliefs about normality and our own vulnerability. While these assertions are quite familiar to disability researchers and advocates, young students of disability studies will find them, and the essays presented in this book, insightful and provocative. Davidoff illuminates how Dr. Longmore's experience with disability and the barriers he faced in the social service system uniquely place him in a position to combine the research skills and expertise of a historian with the perspectives of a disability activist in his essays. Dr. Longmore's personal experience with disability brings a lively and personal perspective to his writing and demonstrates why it is crucial for people with disabilities to become trained academicians and scholars.

In the introduction, Dr. Longmore makes a sound argument for the need to move beyond traditional ways of viewing disability and argues for disability studies programs that analyze American society through a disability lens. His essays are located in the overarching paradigm that today grounds disability studies and disability activism. He points out that disability studies critically analyzes the ideas about disability that have shaped societal organization, public policies, cultural values, architectural design, individual behavior, and interpersonal encounters from the perspectives of people with disabilities. Dr. Longmore points out that many of his essays reflect the evolution of analysis of the mid-1970s and 1980s, when they were originally written. He points out that a more nuanced and deeper analysis is needed for a further exploration of American culture and social values from a disability perspective.

Particularly outstanding are the essays on "Randolph Bourne" and the "League for the Physically Handicapped"—historical readings that are often overlooked by today's disability scholars. These must-read essays combine provocative and insightful historical research with scholarly perceptions based upon the new perspectives of disability studies. These essays help us understand the obstacles and triumphs of people with disabilities of our parents' or grandparents' generations. These experiences are often lost, because most of us never hear of these issues from older family members.

Other essays, such as "Disability Watch", which chronicles the inaccessibility and lack of accommodation in our society, are written purely from an advocacy angle. The essays on assisted suicide cogently present the perspective of disability rights advocates, such as "Not Dead Yet". Readers interested in the essays on advocacy to release the implementing regulations for Section 504 of the Rehabilitation Act and the independent living movement may also wish to pursue more recent writing and analysis on the disability rights movement by other authors, such as Scotch, Shapiro, and Brown, who explore these issues more fully.

The essays on movie and television stereotypes provide an interesting perspective on portrayal of disability in the media during the 1970s and 1980s; these portrayals of disability are probably still true today. Dr. Longmore's analysis of A Beautiful Mind would have been a fascinating addition to this section.

The final essay, Why I Burned My Book, is brilliant and worth the purchase. This combines a historical and thoughtful analysis of modern rehabilitation and welfare programs with Dr. Longmore's personal experiences. This compelling essay should be required reading for those who craft, implement, and study public policy.

References

Brown, S. (2000). Freedom of movement: IL history and philosophy . Houston, TX: Independent Living Research Utilization.

Scotch, R. (1984).� From Good Will to Civil Rights: Transforming Federal Disability Policy. Philadelphia: Temple University Press.

Scotch, R. (2002). Paradigms of American social research on disability: What's new?� Disability Studies Quarterly , 22, 2, 23-34.

Shapiro, J. (1993) No Pity: People with Disabilities Forging a New Civil Rights Movement, New York: Random House.

This article is an excerpt of writings regarding body acceptance while living with a disability. As a young woman in my early twenties with a physical disability, I've come to accept and own the body I've been given regardless of society's pressures and conception of able-bodied beauty.

Life has given me twists and turns, and at times I've been confused as to which way is up.

People have told me that I'm weak -- that I won't measure up to anything, that my dreams cannot be fulfilled. And science cannot treat or stop a progressive disease. I've been left to fend for myself. My innocence stripped away and abandoned as a child, afraid and conflicted in the eye of a storm.

I've been searching for answers and looking for serenity for years; whether that's in a human connection, scriptures, or quotes in hopes of making peace with a card I was not expecting to be given.

For years I thought I was living a nightmare, aimlessly waiting to be awoken and told that I was experiencing a horrifying hallucination. I felt crushed and hopeless when thinking about a future, and if there was one, when living in a body that may fail my dreams and aspirations.

I cried.

And I cried for nights.

Since then, I've questioned where I've belonged -- in relationships, friendships, in my community, in society. I've questioned my talents. I've questioned my opinions and capabilities. I even questioned how I can measure myself in a body that conflicts with my desires.

But as inner turmoil may come and go, I've come to realize that my body is pure, specifically designed, and not left to be abandoned. That my body is a dimension of myself, and something of power and strength. Whether society, strangers, friends, lovers or family understand the true perception of me may or may not matter. What matters is how I see myself.

It doesn't matter if science ever has answers for me.

What matters is that I continue to push forward.

It doesn't matter what society thinks of me.

What matters is that I see my body's pureness.

It doesn't matter if I use a walker, wheelchair, power chair, or any medical devices.

What matters is that I can move freely and independently.

It doesn't matter what doctors tell me.

What matters is that I own my body and that I'm my own advocate.

It doesn't matter.

None of it matters.

What matters is that I continue to live.

Like my finger to the wind, I will continue to live on. I will continue to chase after and live my dreams. Because I can. I am autonomous and it's my prerogative to live the life specifically designed for me, guided by my inner light. That light, an inner flame that has guided me from a child in the eye of a storm to now, taking a stand and owning my body.

My body has taken me to places I once dreamed of. My body has traveled across the world through different time zones -- the Acropolis, Olympic stadiums, the Andes Mountains to Nelson Mandela's hometown. My body has a powerful voice-- from attending the United Nations, Capitol Hill, the White House to meeting a president. And my body has broken records; shattering preconceived limitations of the human body. With every stroke and deep breath, my body has pushed passed every roadblock and closed door; and will continue to do so. My body is beautiful. My body is an incredible gift

My physical dimension is a magnificent piece of artwork; carefully painted, sculpted, and drawn to its truest form. Every freckle, mole and piece of skin was intentionally designed. My body is not a mistake. It has carried me through every chapter of my life and will continue to do so; regardless of not knowing what the future holds. My body is miraculous as it molds into different phases of my life and carries me through moments of pain and exertion to times of peace and relaxation.

My body is incredibly strong. It was not made of porcelain and intended to easily break. My body is cohesive and sturdy -- like water and the trunk of a tree, and perfectly blends with nature's elements. Its bark may be rough and torn around the edges, but its inner being was specifically created to withstand all storms in any season.

My body has always been there for me. It will never leave me and it will always do its best at whatever we encounter together. My body is a dimension of myself and will forever stay by my side. It's time to fully own my body as it's one incredible creation.

My body is a gift.

A gift I am grateful for.

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