Becoming Citizens. Susan Schwartzenberg
Becoming Citizens
Becoming Citizens
Family Life and the Politics of Disability
Susan Schwartzenberg
University of Washington Press
Seattle and London
© 2005 by Susan Schwartzenberg
Printed in the United States of America
A project by Susan Schwartzenberg
Design: in collaboration with Diane Burk
12 11 10 09 08 07 06 05 5 4 3 2 1
Funded by the Office of Arts & Cultural Affairs, City of Seattle.
All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopy, recording, or any information storage or retrieval system, without permission in writing from the publisher.
University of Washington Press
P.O. Box 50096, Seattle, WA 98145
Library of Congress Cataloging-in-Publication Data
Schwartzenberg, Susan.
Becoming citizens : family life and the politics of disability / Susan Schwartzenberg.
p. ; cm.
Includes bibliographical references.
ISBN 0-295-98519-4 (pbk. : alk. paper)
1. Parents of children with disabilities--Washington (State)--Personal narratives.
2. Learning disabled children--Washington (State)--Family relationships.
3. Special education--Parent participation--Washington (State).
4. Legal assistance to children--Washington (State). I. Title.
HQ759.913.S374 2005
649'.15--dc222005000390
The paper used in this publication is acid-free and recycled from 20 percent post-consumer and at least 50 percent pre-consumer waste. It meets the minimum requirements of American National Standard for Information Sciences—Permanence of Paper for Printed Libraray Materials, ANSI Z39.48-1984.
All contemporary photographs by Susan Schwartzenberg unless otherwise noted. Cover, The Nelson family c 1940. Page x, Nelson Family, xeroxed page, courtesy of Linda Nelson. Page xviii McNary Family trunk. Page xviv Hiramatsu Family snapshot, c.1956, courtesy Mary Hiramatsu. All other snapshots and documents courtesy of the families.
Contents
Foreword by Office of Arts & Cultural Affairs, Seattle
Introduction by Susan Schwartzenberg
The Nelsons
The Dolans
The Safioleses
The Pyms
The Werners
The Taggarts
The Hiramatsus
The Chapmans
The Basses
Marie Strausbaugh
Lance Peake
Jeff McNary
Sharon Gowdey
Afterword by Steve Eidelman
Becoming Citizens: Family Life and the Politics of Disability is a chronicle of the lives of thirteen families in the Seattle area who raised children with developmental disabilities between 1940 and 1980.
In January 2002 I began working with the Seattle Family Network, a small group of people connected to one another because they each have family members with a developmental disability. They came together to work with an artist to tell the story of the “senior families” in the disability community. This was a generation of parents who, after World War II, went against the conventional medical wisdom of that time and refused to institutionalize their children with significant developmental disabilities or “mental retardation.” Growing up in the community, these children were often denied access to public schools, churches, programs, and medical benefits. At the heart of this document is the story of four mothers turned parent advocates, who, with grass-roots support from all over the country, became the principal authors of the Education for All Handicapped Children Act, passed as a Federal law in 1975. This civil rights legislation secures educational rights for every person with a disability in America.
This project explores through interviews and photographs the experience of family life and disability and the ways ordinary citizens become activists.
—Susan Schwartzenberg
Foreword
The City of Seattle Office of Arts & Cultural Affairs is honored to support Becoming Citizens, a collaboration between artist and photographer Susan Schwartzenberg and her partners in the disabilities community in Seattle. Believing in the critical importance of art in our civic life, the city has initiated and funded this and dozens of other projects through its innovative ARTS UP program, which supports community-artist teams in a collaborative process of exploration and creation.
Extending the parameters of contemporary public art practice, ARTS UP (Artist Residencies Transforming Urban Places) paired artists and communities to develop arts-based collaborations around shared goals. ARTS UP was an act of faith in the creative process and reinforced the notion that art could be at once community-based, challenging, and articulate. The program deployed the potential of arts in community change and development, grounded in the principles of cultural democracy, selfdetermination, collaborative cultural production, and social justice. ARTS UP sought to develop public infrastructure in support of arts-based civic dialogue, sustaining the City of Seattle’s public art mission "to actively engage artists in the civic dialogue" and its goal of strong, healthy communities.
The ARTS UP model supposes a role for the artist that embraces his or her potential as a critical thinker and agent of change. The artistic results may cross disciplinary boundaries, so that their character as “art” may not even be readily apparent. Yet the artist’s creative thinking, focus, and aesthetic are essential to such projects. Across the country, artists are engaging communities