Body, Remember: A Memoir

PREFACE

PREFACE Seven Years Later: A Signifying Wheelchair and a Pristine Field of Snow QVHAT is the value of one person's story? This question, or variations of this question, have haunted me since I finished writing Body, Remember in the winter of 1995-96. I have often asked and been asked this question and I have asked it of myself. Until recently, stories about people who live with disabilities have been written by the nondisabled. And most of the stories, even when written by a person with a disability , center on the experience of one person. This narrative , familiar from television movies-of-the-week and films, tells of an individual overcoming his or her disability. These narratives have helped give rise to defining disability according to what is known as "the medical model," where the focus is on the impairment of the individual and how an individual deals with the impairment. Emphasis is on the cure or eradication of the impairment. However, in the past decade, writers, theorists, and historians have begun to look at disability from a social model, which instead places the emphasis on how society disables physically impaired people. Disability is defined by a social structure that does not allow full participation of the disabled in the life of the culture. An acknowledgment xi Kenny Fries of the change in the paradigm of how disability is viewed was the passage in 1990 of the Americans with Disabilities Act (ADA), called at the time the most far-reaching civil rights legislation since the Civil Rights Act of 1964. My own understanding of this paradigm shift was just beginning when I started writing Body, Remember. The narrative of my memoir can be seen as the growing awareness I had of this shift, the movement from viewing myself as an isolated person with a disability, as a disabled person who internalized the misinformation and stereotypes of disability , to being in community with others, disabled and nondisabled, who have a more accurate understanding of disability, and to a growing understanding of disability as a social construct. There is no overcoming my disability, only a movement toward a different understanding of the place disability has in our culture and in our lives. There is no resolution because the narrative of disability is not a narrative of answers. The narrative of disability is a narrative of questions. In Past Due: A Story of Disability, Pregnancy, and Birth, Anne Finger tells of her experience at a feminist conference where she talked about the inhumane treatment she received as a child in the hospital because of complications from palio . After publicly sharing her story, a colleague said: "If you had been my child, I would have killed you before I let that happen. I would have killed myself, too." Finger reacts: "My heart stops. She is telling me I should not be alive. It is myoId fear come true: That if you talk about the pain, people will say, 'See it isn't worth it. You would be better off dead.'" Perhaps Body, Remember can be read as a reaction to Finger 's experience. I wanted to make it clear that my life, a life that includes a congenital physical disability, is worth living. xii Body, Remember Misreadings of disabled lives continue to be abundant. The media is filled with "inspiring" stories of cure. Television still airs telethons, the most famous being Jerry Lewis's annual muscular dystrophy telethon, which raise funds for cures by parading disabled children as objects of sympathy and pity. Christopher Reeve gains the spotlight for wanting to walk again while the voices of tens of thousands of people with disabilities who lack attendant care are drowned out by a nursing home lobby that threatens the independence and dignity essential to our lives. The U.S. Supreme Court ignores the intention of Congress by whittling down the definition of the disabled whose civil rights should be protected under the ADA. Seventy percent of people with disabilities in the United States remain unemployed. Recently I encountered an essay linking Body, Remember to the recovered memory of child abuse and the backlash against memoir. Although I was fascinated with some of what the essay had to say, I strongly disagreed with some of the conclusions, as well as the description of my book as a narrative of "agony and inspiration." What I took from the essay was a crucial misreading...