What Mothers Say about Special Education: From the 1960s to the Present

257 Pages·2009·2.029 MB·English

by  Jan W. Valle (auth.)

What Mothers Say about
Special Education
Palgrave Studies in Urban Education
Series Editors: Alan R. Sadovnik and Susan F. Semel
Reforming Boston Schools, 1930–2006: Overcoming Corruption and Racial Segregation
By Joseph Marr Cronin (April 2008)
What Mothers Say about Special Education: From the 1960s to the Present
By Jan W. Valle (March 2009)
Charter Schools: From Reform Imagery to Reform Reality
By Jeanne M. Powers (forthcoming)
The History of “Zero Tolerance” in American Public Schooling
By Judith Kafka (forthcoming)
What Mothers Say about
Special Education
From the 1960s to
the Present
Jan W. Valle
WHAT MOTHERS SAY ABOUT SPECIAL EDUCATION
Copyright © Jan W. Valle, 2009.
Softcover reprint of the hardcover 1st edition 2009 978-0-230-60651-7
All rights reserved.
First published in 2009 by
PALGRAVE MACMILLAN®
in the United States—a division of St. Martin’s Press LLC,
175 Fifth Avenue, New York, NY 10010.
Where this book is distributed in the UK, Europe and the rest of the world,
this is by Palgrave Macmillan, a division of Macmillan Publishers Limited,
registered in England, company number 785998, of Houndmills,
Basingstoke, Hampshire RG21 6XS.
Palgrave Macmillan is the global academic imprint of the above companies
and has companies and representatives throughout the world.
Palgrave® and Macmillan® are registered trademarks in the United States,
the United Kingdom, Europe and other countries.
ISBN 978-1-349-37380-2 ISBN 978-0-230-61973-9 (eBook)
DOI 10.1057/9780230619739
Library of Congress Cataloging-in-Publication Data
Valle, Jan W., 1956–
What mothers say about special education : from the 1960s to the
present / by Jan W. Valle.
p. cm.—(Palgrave studies in urban education)
Includes bibliographical references.
ISBN 978-0-230-60651-7
1. Special education—United States. 2. Learning disabled
children—Education—United States—Case studies. I. Title.
LC3981.V24 2009
371.90973—dc22 2008031123
A catalogue record of the book is available from the British Library.
Design by Newgen Imaging Systems (P) Ltd., Chennai, India.
First edition: March 2009
10 9 8 7 6 5 4 3 2 1
Transferred to Digital Printing in 2009
To my mother
Myra Weatherly
and
in memory of my children
Jessica, Zachary, and Franco
Contents
Series Editor’s Foreword ix
Preface xi
Acknowledgments xvii
One Setting the Stage: Context and Method 1
Two From Past to Present: American Culture,
Public Schools, and Parents 19
Three The Early Years: First Generation Mothers 53
Four The Implementation Years: Second Generation Mothers 99
Five The Maintenance Years: Third Generation Mothers 143
Six Mothers Speaking to Mothers:
A Cross-Generational Conversation 183
Seven Special Education as Ethical Practice 199
Appendices 225
References 233
Index 243
Series Editor’s Foreword
Jan Valle’s book looks at 15 mothers whose children have special needs,
from the early 1960s through 2004, roughly 40 years. At the time her work
begins, Willowbrook was still operating, warehousing youth and adults in
deplorable conditions, not unlike the prisons Dorothea Dix visited over a
century ago. As Valle demonstrates to us in her book, much has changed
over the time of her work, yet much remains the same.
Valle writes both scholarly and movingly about the experiences of moth-
ers of special needs children who learn, often painfully, how to negotiate
the system to obtain basic social and medical services that their children
are entitled to and to ensure that they be educated to the best of their
abilities. Novices at the birth of their children, many become experts, cog-
nizant of their legal rights with various degrees of success, in dealing with
medical and educational professionals. What is so important about this
book is that it illuminates the actual experiences of mothers over a histor-
ical period in which the laws were changing, but often not, the attitudes
of the professionals.
I speak from firsthand experience. Although not one of Valle’s mothers
in the book, I am the mother of a special needs child, Margaret “call me
Mags” Semel, born in 1969. From the beginning I knew that something
was wrong when she did not develop according to what my old undergrad-
uate psychology textbook stated as the norm. However, I will never forget
the words of my pediatrician, who informed me when I raised the issue of
Mags not speaking, that “even the most severely retarded children learn to
talk.” As it was before the passage of the Education for All Handicapped
Children Act (PL 94–142), from then on, it was a constant struggle to
find speech therapists, psychologists, educators, and of course, schools that
would be willing to take Mags and work with her. Along the way I was
told by medical professionals that I was “hostile to the medication” they
prescribed, even though I knew that it made her more hyperactive, not less
as it was supposed to, and that because she did not follow instructions, she
might be deaf. Only a few of the medical professionals who I encountered
over 39 years actually asked me what I thought.
x / series editor’s foreword
Thus Valle speaks for all mothers of special needs children in her book.
It is history as seen through a particular group of mothers—women who
are often overlooked by special educators and healthcare professionals and
who work tirelessly to help their children achieve their potentials often
against great odds. Her book makes an important contribution to the liter-
ature on special needs and disability studies, but it also personalizes a very
special group of women whose stories needed to be told.
This book comes at an important time. With debates among aca-
demics over the neurological versus social determinants of disabilities—
neuroscientists arguing that disabilities are organically and biologically
based and disability studies theorists often arguing that they are socially
constructed—it is essential that the voices of families be part of the con-
versation. Through her interviews with mothers, Valle’s book is a powerful
investigation into the world of mothers and their children with disabilities
and the necessity for medical professionals and school professionals to lis-
ten to them.
SUSAN F. SEMEL
New York City
August 2008
Preface
I chose special education as my college major the same year that the
ninety-fourth United States Congress committed to provide a “free and
appropriate education for all handicapped [sic] children” (Education for
All Handicapped Children Act [PL 94–142], 1975). As a college student
during an era dubbed The Me Generation, I longed for the political activ-
ism that had defined the 1960s. It was through my studies in special edu-
cation that I discovered political activism—alive and well—in the parents
of children with disabilities and their advocates whose efforts redefined a
nation’s response to disability. Building upon the momentum of the civil
rights movement, parents and advocates likewise drew upon the fourteenth
amendment to challenge the separate and unequal education of children
with disabilities. I clamored to join the ranks of this educational revolu-
tion that culminated in the passage of PL 94–142—the most sweeping
legislation for persons with disabilities that Congress had passed in our
country’s history.
In the fall of 1978, the year in which states were required to have imple-
mented PL 94–142, I began as a first-year teacher in a middle school learn-
ing disability resource room. I imagined entering an educational context
that embodied the spirit of the law. Instead I met a school community—not
unlike most of this era—that viewed the new law’s complex requirements
for institutional structures and regulations as a considerable intrusion. It
was a transition marked by resentment and resistance on the part of many
administrators and classroom teachers.
Even more surprising to me, I found that parents seemed disconnected
to the law that promised a free and appropriate public education for their
children with disabilities. So, as a young, White, middle-class teacher, I
set out to cultivate meaningful partnerships with the parents of my stu-
dents. I was astonished that my overtures were met with responses ranging
from surprise to suspicion. From a parent perspective, uninitiated contact
from school personnel rarely signaled a prelude to positive conversation.
In fact, parents steeled themselves to hear a litany of offenses committed
by their child, followed by the familiar demand that they work with the