RU Ignored Shunned & Invisible the Love & Nurturing that John Received Discussion answer the 10 questions from the book. I uppload the files for the questi

RU Ignored Shunned & Invisible the Love & Nurturing that John Received Discussion answer the 10 questions from the book. I uppload the files for the questions and the book 1. Under what circumstances does John become invisible?
2. What does it mean to be “not a drooler.” How does this explain the definition
of mental retardation?
3. What does it mean, “As men grow more civilized…a complex mutual
dependence becomes the universal rule?”
4. What is the ethical implication of James Watson’s paper Looking Forward?
Which side of the debate are you on and why?
5. What was the underlying cause of John’s physical outbursts?
6. What was Darwin’s personal dilemma? What might have happened had he
wrote his book after he faced this dilemma?
7. Who were Eldridge Cleaver and Floyd Cochran and how did their personal
experiences change their worldview? What might the world be like if there
were no “defective” individuals?
8. John was featured in a newspaper article. What effect did that have on John?
9. What happened when Dr. Smith moved to South Carolina?
10. What did Dr. Smith conclude about his impact on John’s life?
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Ignored, Shunned, and Invisible
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IGNORED, SHUNNED, AND
INVISIBLE
How the Label ‘‘Retarded’’ Has Denied
Freedom and Dignity to Millions
J. David Smith
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Library of Congress Cataloging-in-Publication Data
Smith, J. David, 1944–
Ignored, shunned, and invisible : how the label ‘‘retarded’’ has denied freedom
and dignity to millions / J. David Smith.
p. cm.
Includes bibliographical references and index.
ISBN: 978–0–313–35538–7 (alk. paper)
1. Lovelace, John, 1931–2001. 2. People with mental disabilities—Biography. 3. Mental
retardation facilities patients—Biography. 4. People with mental disabilities—Institutional
care. I. Title.
RC570.2.S63 2009
616.890092——dc22
2008033673
British Library Cataloguing in Publication Data is available.
Copyright © 2009 by J. David Smith
All rights reserved. No portion of this book may be
reproduced, by any process or technique, without the
express written consent of the publisher.
Library of Congress Catalog Card Number: 2008033673
ISBN-13: 978–0–313–35538–7
First published in 2009
Praeger Publishers, 88 Post Road West, Westport, CT 06881
An imprint of Greenwood Publishing Group, Inc.
www.praeger.com
Printed in the United States of America
The paper used in this book complies with the
Permanent Paper Standard issued by the National
Information Standards Organization (Z39.48–1984).
10 9 8 7 6 5 4 3 2 1
Every reasonable effort has been made to trace the owners of copyright materials in this
book, but in some instances this has proven impossible. The author and publisher will be
glad to receive information leading to more complete acknowledgments in subsequent
printings of the book and in the meantime extend their apologies for any omissions.
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This book is dedicated to the memory of my father, Walter Harrison Smith, Jr.
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Contents
Preface
ix
Acknowledgments
xi
Introduction: Speaking of Mental Retardation
1
Chapter 1 What Are You Going to Do About It?
12
Chapter 2 Minimally Decent Samaritans
20
Chapter 3 Feebleminded: John Lovelace, Patient #6839
27
Chapter 4 ‘‘Patient Is Full Code’’
36
Chapter 5 Becoming Invisible
43
Chapter 6 Broken Ties: ‘‘Addressee Unknown’’
50
Chapter 7 Looking Backward, Looking Forward
59
Chapter 8 Headaches, Smoking, and Fights: Leaving the Home
71
Chapter 9 Defining Disability Up and Down
81
Chapter 10 John Lovelace and the Mercantile Theory of Mental
Retardation
95
Chapter 11 Darwin’s Last Child: Disability, Family, and Friends
108
Chapter 12 ‘‘Fairview Is Nice to Me’’
120
Chapter 13 Ethics, Powerlessness, and Informed Consent
131
Chapter 14 Blindness and Finding Yourself in Purgatory
148
Chapter 15 Policies, People, and No Room at the Graveyard
161
Epilogue
172
Notes
175
Bibliography
183
Index
189
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Preface
No man is an Iland, intire of it self; every man is a piece of the continent,
a part of the main.
—John Donne, Devotions upon Emergent Occasions
Historically, segregation and social isolation have been recurring
responses to people who are considered defective or deficient in some
way. People tend to keep social and physical distance from those they
consider to be too different from themselves; too different from the
social norms and values they embrace. A society that believes that
having a home is essential to normal human life will view homeless
people as being deviant, and it will distance them socially from its
other members. A society that expects its members to be selfsufficient will look down on and isolate those who are too dependent
on others. A society that worships youth will revile old people. A society obsessed with physical and psychological perfection will seek
ways to quarantine those who are considered imperfect.
This book is a collection of stories about the struggle that people
with the label mental retardation face as they try to connect with the
society in which they live, and the reluctance of that society to let them
do so. It is also a biography of one man who spent a lifetime on isolated social shores. It is a tale of the ways in which he was often
ignored, regularly avoided, and treated as less than a person. The
ebb and flow of social policies and practices regarding people with
disabilities will be examined through the lens of his life experiences.
The book is also a story of our society, of our parents, friends, and
teachers; those who in many cases encouraged us to be kind and generous to others. It is a story about the society that continues to promote
values that sometimes inspire us, sometimes challenge us, and sometimes tell us to look the other way when facing unsettling human differences or disturbing human need.
The isolated person, the metaphorical island to which each chapter
will return, is John Lovelace. He lived 70 years, and for all of his life
his identity was that of a person who was mentally retarded. I use
x
Preface
his real name because I hope to reveal, rather than hide, a man who for
most of his life was made to be invisible. For John, like others with the
label, the risks of visibility are minor compared to the consequences of
invisibility and isolation.
JDS
Acknowledgments
Thanks go to my family, friends, and mentors who may read this book
and find that their influence in my life has been profound. Thank you
for caring about me and believing that I had something of value to say.
Much of the credit for all of my work belongs to my wife, Joyce, and
our children Lincoln, Allison, and Sallie. I have been sustained by this
love and support over the decades. They have added the greatest richness to my life.
Jennifer Jones has blessed this book with her care and attention to
detail. My thanks go also to Natsuko Takemae and Andrea Cox.
Finally, my appreciation goes out to my students, past and present,
who have listened to my stories and who have encouraged me to keep
telling them.
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Introduction
Speaking of Mental Retardation
How does being called mentally retarded influence the feelings and
self-esteem of people who are so labeled? Historically, how has it
influenced the way that people receiving the diagnosis have been
treated? What does it mean for them today? This book presents arguments that the label of mental retardation is and has long been a myth,
a myth that possesses destructive power. The evidence offered consists of the voices of people whose lives bear the impact of the retardation designation and who have struggled with the stigma associated
with it. Some of the voices are those of fictional characters, their words
coming from the insightful observations of acclaimed writers. Others
are the words of real people who give voice to their struggles with
an identity that is not of their own choosing. In particular, the story
of a man named John Lovelace will serve as a personification of the
meaning that mental retardation has had in American society.
The stories and voices presented in this book are intended to provoke questions about the meaning of mental retardation, and the people to whom the term and concept is and has been assigned. It is
written as an attempt to explain a complex and abstract psychological
construct in a manner that does not require prior knowledge, only a
willingness to understand the compelling human needs of people
who have long been misunderstood.
2
Ignored, Shunned, and Invisible
FORREST: ‘‘BEIN A IDIOT’’
The 1994 film, Forrest Gump, was a humorous and yet moving portrayal of a man who was diagnosed during his early school years as
having physical disabilities and an IQ that categorized him as mentally retarded. This highly romanticized saga of life with disabilities
unfolds with Forest attending regular public school classes due to the
persistence of his mother, becoming a college football star, being decorated as a Vietnam War hero, founding a business that yields millions
of dollars, and becoming a spiritual cult figure. Most importantly, it
depicts him as a sensitive and strong friend, husband, and father.
The most famous line in the movie appears in the first scene. Forrest
offers a chocolate to a nurse sitting next to him at a bus stop. He
explains to her, ‘‘My momma always said, life is like a box of chocolates. You never know what you’re gonna get.’’ In the book by Winston
Groom on which the movie was based, however, Forrest’s actual reference to a box of chocolates is quite different. It provides a contrasting
portrait of his struggle with being classified as retarded.
Let me say this: bein a idiot is no box of chocolates. People laugh, lose
patience, treat you shabby. Now they says folks sposed to be kind to
the afflicted, but let me tell you—it ain’t always that way. Even so, I got
no complaints, cause I reckon I done live a pretty interestin life, so to
speak.
I been a idiot since I was born. My IQ is near 70, which qualifies me, so
they say. Probly, tho, I’m closer to bein a imbecile or maybe even a
moron, but personally, I’d rather think of mysef as like a halfwit, or somethin not no idiot—cause when people think of a idiot, more’n likely they
be thinkin of one of them Mongolian idiots—the ones with they eyes
too close together what look like Chinamen an drool a lot an play with
theyselfs.
Now I’m slow—I’ll grant you that, but I’m probly a lot brighter than
folks think, cause what goes on in my mind is a sight different than what
folks see. For instance, I can think things pretty good, but when I got to
try sayin or writin them, it kinda come out like jello or something . . .
Now I know somethin bout idiots. Probly the only thing I do know
bout, but I done read up on em—all the way from that Doycheeeveskie guy’s idiot, to King Lear’s fool, an Faulkner’s idiot, Benjie,
an even ole Boo Radley in To Kill a Mockingbird—now he was a serious
idiot. The one I like best tho is ole Lennie in Of Mice an Men. Mos of them
writer fellers got it straight—cause their idiots always smarter than
people give em credit for. Hell, I’d agree with that. Any idiot would.
HeeHee.1
Introduction: Speaking of Mental Retardation
3
DEBORAH OR EMMA? SEARCHING FOR THE TRUE VOICE
In his 1912 book, The Kallikak Family: A Study in the Heredity of Feeblemindedness, the psychologist Henry Goddard portrayed a very real
young woman to whom he gave the pseudonym Deborah Kallikak.
He presented her as the prototype of his conception of the moron,
the term he created for mild mental retardation. He argued that her
institutionalization at the Vineland Training School in New Jersey
was necessary for her own well-being and for the protection of society.
He asserted that if she were released she would almost immediately
fall into a life of depravity and promiscuity. He also talked of the institution’s positive effects on her life. He included pictures of her in the
book that displayed not only her handiwork (sewing and woodworking), but also made evident her physical attractiveness. According to Goddard, she was thriving and growing, in spite of her
retardation, because she was institutionalized.
Indeed, Deborah would never be a member of a society other than
that of an institution. She was destined to live a total of 81 years in
two institutions. From the time she entered the training school until
she died at the Vineland State School across the street, she would
never know life free of institutional influence. When she died in
1978, she was buried in the institution’s cemetery under a marker
bearing only her name, her real name: Emma Wolverton.
Descriptions of Deborah subsequent to the publication of the Kallikak study repeatedly refer to her beauty and charm. Edgar Doll
worked with Goddard as an assistant from 1912 to 1917, and in 1925
he became director of research at Vineland. In 1983 his son Eugene,
who had known Deborah as a child, wrote:
There is no doubt that, whatever her mentality, she radiated that extra
spark of personality which makes one stand out in a crowd and which
not only attracts but holds friends. J. . . . E. Wallace Wallin [an eminent
American psychologist] wrote urbanely of his first encounter with
Deborah—finding her in charge of the kindergarten at the Training
School and mistaking her for the teacher. At lunchtime he was surprised
to find the same attractive young woman waiting on his table . . .
Time and again visitors in both the Training School and the Vineland
State School . . . to which Deborah was later transferred, commented on
her seeming normality.2
Helen Reeves, executive social worker at the Vineland State School,
commented on Deborah’s transfer from the training school:
4
Ignored, Shunned, and Invisible
For our part we knew we had acquired distinction in acquiring Deborah
Kallikak, for by this time the story of her pedigree was becoming well
known. And such an able, well trained and good looking girl must be an
asset . . . She excelled in the manual arts of embroidery, woodcraft and
basketry, played the cornet beautifully and took star roles in all entertainments as a matter of course. She was well trained in fine laundry work
and dining room service, could use a power sewing machine and had
given valuable assistance as a helper in cottages for low grade children.3
As an adolescent, Deborah served in the home of the superintendent
of the Training School. In addition to performing housekeeping duties,
she cared for the family’s infant son. She later assumed child care
responsibilities for the assistant superintendent of the State School.
Children from both of these families continued to visit and correspond
with Deborah throughout her life. A woman in one of the families
acknowledged her affection and respect by naming her own daughter
after Deborah.4
On occasion, Deborah accompanied the official families to the shore
for holidays. Her preference in vacations, however, seems to have
been for a series of yearly excursions that she and social worker
Reeves took together. Following is Reeves’s recollection of their 1939
autumn trip to Washington, D.C.:
As we rolled along southward I did not realize—though I should have—
that I was establishing a precedent and that the succeeding five years
would find me doing exactly the same sort of thing at this season of the
year. Nineteen-forty would see us at the World’s Fair in New York City;
Luray Caverns would be visited in 1941 and Niagara Falls the year
following; New York City again in 1943, and then—gasoline being scarce
and travel facilities constricted—1944 would find us in Philadelphia for
those three precious days.5
Doll quotes one acquaintance as saying, ‘‘Hers was a body which
moved with full knowledge of the impact of its movements on the
opposite sex.’’ He goes on to cite the impression of an employee who
had accompanied a group of the institution’s girls on a boardwalk
stroll: ‘‘Every time we passed a man or group of men, they would stop,
turn, look after Deborah, and occasionally start to follow us. I do not
know what signals Deborah was sending out, but it seemed that one
glance from her eyes could summon a following. I was uneasy until
we got home, though Deborah had done nothing really fresh or out
of order.’’6
While Deborah was serving as a nurse’s aide during an epidemic,
she stayed in a room near the sick patients. There she was not under
Introduction: Speaking of Mental Retardation
5
the same close supervision as in her usual living area. It appears that
her woodworking skill enabled her to alter her window screen for easy
exit and entry. She had fallen in love with an employee of the State
School (apparently a maintenance worker). They seemingly enjoyed
the moonlit grounds and each other in a romantic interlude before
being discovered. The young man was ‘‘kindly dismissed by a lenient
justice-of-the-peace’’ and regulations were tightened for Deborah.7
After a similar experience sometime later, Deborah mourned, ‘‘It isn’t
as if I’d done anything really wrong. It was only nature!’’8 Years afterward, she would again fall in love. Helen Reeves provides some
insight into the institutional attitude concerning Deborah’s feelings
of love and her right to romantic involvement.
In the early fall of 1939 I returned to Vineland after a month’s leave to
find Deborah’s spirits and morale at low ebb. She had worked hard during the summer, trying to do justice to a housework job for one of the
official family, keeping on meanwhile with her responsibilities as custodian of the gymnasium and costume room. She had also managed to fall
in love while I was away, which romance had been discovered and quietly nipped in full bloom without her knowledge.9
How can it be that a woman of considerable talent in several areas of
her life, a woman of beauty and charm, a woman lacking in academic
skills but able to perform productive work is institutionalized for 81 of
the 89 years of her life? When so much of the information that is available indicates that Deborah (Emma) had the potential for living in
society, what factors contributed to her lifetime of segregation?
Repeatedly in the accounts of Deborah’s life, references are made to
her appearance of normality. Visitors and new employees often
expressed disbelief when told that she was mentally retarded. Time
and again, such skepticism about the validity of classifying Deborah
as feebleminded, as a moron, was countered with the results of standardized intelligence tests. Throughout the available reports, her performance on tests of academic or abstract ability was held to be of
greater importance than the obvious strengths she demonstrated in
her daily life. All subsequent descriptions echo to some degree Goddard’s summation of Deborah’s condition:
Here is a child who has been most carefully guarded. She has been persistently trained since she was eight years old, and yet nothing has been
accomplished in the direction of higher intelligence or general education.
Today if this young woman were to leave the Institution, she would at
once become a prey to the designs of evil men or evil women and would
lead a life that would be vicious, immoral, or criminal, though because of
6
Ignored, Shunned, and Invisible
her mentality she herself would not be responsible. There is nothing that
she might not be led into, because she has no power of control, and all
her instincts and appetites are in the direction that would lead to vice.10
Goddard eventually tempered his thinking on the issue of the
unchangeable nature of mild mental retardation, on the incurability
of the moron. Deborah, however, would be affected by the legacy o…
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