The Story of Beautiful Girl (43 page)
Then one day, after a talk in Itasca, Illinois, when I was browsing through vendor exhibits, I came across a book with a compelling title:
God Knows His Name: The True Story of John Doe No. 24,
written by a journalist, Dave Bakke. The cover had a photo of a young African American man who looked frightened; the description said it was a true story, re-created from research and interviews. I bought the book and finished it before I’d boarded my plane.
This is the story I learned. One morning in 1945, police found a young deaf man, approximately fifteen, wandering in an alley in Illinois. No one understood his signs, and he seemed to be illiterate. Rather than bring him to a nearby school for the deaf or print notices in the paper that a missing teenager had been found, he was labeled feebleminded and sent to an institution, where he was given a number because no one knew his name. After a period of rage, he took on a sense of responsibility. Staff came to like him, with many coming to feel he had no mental disability. But their concerns went
unheeded, and when efforts were made to communicate in American Sign Language, he didn’t respond. Were his signs in a different language? Had he never received an education, a fate that befell many poor black people in that era? No one ever knew; he remained in one facility after another until his death almost fifty years later.
My heart broke as I finished the book, and I couldn’t stop thinking about this man. Who was he? Whom had he loved, and who had loved him, before he got trapped? Why had no one come to find him? What might have happened if he’d come to love another resident? What if he had escaped? Would he have eventually found language, a home, and an awareness of his rights? Would he have become happy?
I couldn’t change history, but I wanted to give John Doe No. 24 the life he’d never had.
For a while, though, I held off starting this book. I knew that, as a hearing person, I could only approximate the way someone like Homan (as well as Lynnie) would view the world and express his thoughts. I understood too that the voices of people with disabilities have been suppressed throughout history, and that if their stories were told at all, it was by such outsiders as medical professionals, officials, or family members. Yet John Doe No. 24 wouldn’t leave my mind; his story had become too important to me. Eventually the value of paying tribute to him, and all those who were put away, made me hope that with research, interviews, and, when necessary, imagination, I could come close to doing him, and Lynnie, justice.
This book therefore incorporates details from many people I’ve met, including former residents and staff of institutions; residents and direct support professionals in group homes and senior care facilities; friends, acquaintances, and relatives of people with disabilities; disability studies scholars; and my sister, Beth, and her boyfriend, Jesse. It also draws on numerous historic
news reports and books and a visit to the closed Pennhurst State School.
My interviews with self-advocates and people who once lived in institutions tended to be informal and impromptu, and I did not always record names, so I will extend my gratitude by naming a few of the conferences where I had helpful conversations: Everyday Lives, in Hershey, PA; the New Jersey Self-Determination Initiative, in Edison, NJ; PEAK Parent Conference, in Denver, CO; Indiana’s Conference for People with Disabilities, in Indianapolis, IN; and the Community Residential Support Association, in Yakima, WA. I also learned a great deal from individuals who receive support from Keystone Human Services in Pennsylvania. Others who offered insights about life as a person with a disability, a family member, a friend, or an activist include Katharine Beals, Susan Burch, Allison C. Carey, Vicki Forman, Dan Gottlieb, Kathleen McCool, Jim Moseley, Nick Pentzell, and members of the Sibling Support Project and the Sibling Leadership Network. My friendship with the late Bethany Broadwell was also deeply helpful, in ways too numerous to list. I miss her dearly.
My interviews with the following professionals were invaluable: Nancy Grebe and Robin Pancura, who worked at Pennhurst; Frederika Ebel, Michael McClure, Tracey Schaeffer, Bill Gingrich, Nancy Greenway, and Wade Hosteder, who are or have been direct support professionals; Lillian Middleton, who is a personal care assistant; the staff at the assisted living facility where I have been a hospice volunteer; Dennis Felty, Charles Hooker, Ann Moffitt, Janet Kelley, Michael Powanda, Joanna Wagner, and Patti Sipe, of Keystone Human Services, who permitted me to visit their group homes; Dr. Paul Nyirjesy of Drexel University College of Medicine, who talked me through details about Lynnie’s pregnancy; Karl Williams, who shared memories of working at an institution and assisted the famous self-advocate Roland Johnson in his
autobiography,
Lost in a Desert World
; Beth Mineo, of the University of Delaware’s Center for Disability Studies, who talked with me about selective mutism and physical aspects of speech; and William Gaventa, of the Elizabeth M. Boggs Center on Developmental Disabilities, who provided insight into the theology of disability.
I was fortunate to have had guides who assisted with geographic details: David Hoag, Susan Hoag, Joey Lonjers, Cece Motz, Julie Hiromi Nishimura, Rob Spongberg, and Harriet Stein. My visits with Ginny and Eliza Hyde, and my discussions with Lauren Lee, helped me enrich the sections on Martha and Julia. Wil and Sylvia Cesanek supplied me with numerous books about and replicas of lighthouses.
Among the resources that proved enormously helpful were the documentary films
Without Apology
, by my friend and fellow sibling Susan Hamovitch, and
Through Deaf Eyes
, by Diane Garey and Lawrence R. Hott; and these books:
Inventing the Feeble Mind: A History of Mental Retardation in the United States
, by James W. Trent Jr.;
Minds Made Feeble: The Myth and Legacy of the Kallikaks
, by J. David Smith;
Raymond’s Room: Ending the Segregation of People with Disabilities
, by Dale DiLeo; and
Unspeakable: The Story of Junius Wilson
, by Susan Burch and Hannah Joyner.
I produced the first chapter of this book for Bonnie Neubauer’s birthday, and her faith in the project from that day on saw me through the next few years. Beth Conroy and Mark Bernstein offered encouragement and information early in the process. As the writing progressed, Anne Dubuisson Anderson gave reassurances, perceptive readings, and as much hand-holding as I needed. Mary McHugh provided loving insights and literary cheerleading. Marc Goldman ensured I never lost sight of the value of what I was doing. A number of my former students also provided inspiration by inviting me to their weddings, introducing me to their children, telling me about their publications, sharing the struggles
and triumphs of their careers, asking for my advice on their writing and lives, and simply—no, wonderfully—staying in touch.
Infinite appreciation goes to my agent, Anne Edelstein, for her editorial savvy, sparkling enthusiasm, natural warmth, and plain old friendship; and to Anne’s assistant, Krista Ingebretson, for her cheer and generous support. You are the team that keeps me going; I could not climb these writing mountains without you.
I feel blessed to have had this book land at Grand Central Publishing. My editor, Deb Futter, immediately embraced it with the kind of wholehearted excitement that all writers dream of. Then she gave incisive editorial suggestions that strengthened the story in every way. Dianne Choie, her assistant, handled hundreds of details with efficiency, competence, and the most pleasant of personalities. Anne Twomey designed an exquisitely haunting cover. Leah Tracosas and Sona Vogel steered me gracefully through the copyediting process. And the sales team—true lovers of the written word and champions of books—gave my characters, and those who inspired them, the hope they’d always yearned for: that their story would finally be known by the world.
As always, my hugest thanks go to Hal. My Blue, my Buddy, my lighthouse man.
Author’s Note and Acknowledgments
The House on Teacher’s Lane
Riding the Bus with My Sister
The Writer’s Survival Guide
The Magic Touch
Little Nightmares, Little Dreams
This book is a work of fiction. Names, characters, places, and incidents are the product of the author’s imagination or are used fictitiously. Any resemblance to actual events, locales, or persons, living or dead, is coincidental.
Copyright © 2011 by Rachel Simon
All rights reserved. Except as permitted under the U.S. Copyright Act of 1976, no part of this publication may be reproduced, distributed, or transmitted in any form or by any means, or stored in a database or retrieval system, without the prior written permission of the publisher.
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First eBook Edition: May 2011
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ISBN: 978-1-609-41870-0
