HISTORY'S TRAGEDY AND HOPE, PART II
Thirty years has brought about tremendous change, but we still have a ways to go
Thirty years ago, children with disabilities had no legal right to receive a public education, and families were
encouraged to institutionalize their children in the horrible places described in 1967 by Dr. Burton Blatt as "hell
on earth."
Since, there has been tremendous social change -children with disabilities expect to live and grow up with their
families, receive an education, and as adults, work and live in the communities they call home.
To more fully appreciate how far we've come in a relatively short period of time, I've spoken several times with
Nancy Gardner, Executive Director of North Bay Regional Center in Napa, California.
In 1971 Gardner was a civil rights minded nineteen year old looking for a cause, when she went to work for
Eastern Nebraska Community Office of Retardation (ENCOR) based out of Omaha. ENCOR, started by parents
of children with disabilities, was an innovative organization with a vision that regardless of the severity of a
disability, children could learn skills necessary to live in their communities.
"ENCOR is where I got my first exposure to people with developmental disabilities and it was an opportunity to
use the passion I had as a teenager to make a difference," said Gardner.
Gardner, a college student at the time, was hired to teach and live with eight of the most severely behaviorally
challenged adolescents with mental retardation, ages six to sixteen, in the basement of a sprawling converted old
house in a middle class neighborhood. It was an experiment called the Behavior Shaping Unit.
Gardner's first assignment was to accompany her supervisor to Beatrice State Home and select, from more than
2,000 people, the eight kids with the most profound disabilities and self-abusive behaviors to participate in the
program at the Behavior Shaping Unit.
Gardner's recollection of her first visit to Beatrice was shocking and will always remain vivid in her mind.
"I will never forget the smell, or I should say, the stench. The wards were all overcrowded and most of the people
were naked. Since there were only a couple of chairs on each ward, the people all paced or rocked or laid on the
cold and filthy floor.
"In the sleeping ward, beds were next to one another with barely room to stand up in between and the lights were
blazing 24 hours a day. There was a constant sound of wailing and moaning.
"I saw one woman standing naked in a locked box the size of a coffin, with one tiny barred window. She was
sobbing and begging to be let out. It was heart wrenching.
"One particular image stands out; a bare tiled room with a drain in the middle where about 20 children of various
ages and genders were left for hours on end. Occasionally they were hosed down with cold water by an
impersonal attendant to clean away the urine and piles of feces. Animals in the zoo were treated better."
Children ran up to Gardner begging her to take them away from there.
Bart, ten years old, was one of the first children that would go home with Gardner. He had lived the majority of
his life in Beatrice where the staff kept him from banging his head, a self-abusive behavior commonly acquired
from frustration and boredom, by tying him to a bench with his hands tied to his ankles 22 hours a day.
Even when Bart arrived to his new home, where he was no longer tied up, he would sit with his hands holding his
ankles, as if he were.
"We got him a helmet so he wouldn't hurt himself, and made it fun for him to have the helmet off," said Gardner.
"Over time we saw significant decreases in self-abuse."
Terry was fifteen years old when she came to live and learn at the Behavior Shaping Unit.
"She looked awful," said Gardner. "I remember her so distinctly, she would kneel on all fours and make grunting
noises and sometimes scream like a wild animal. I was afraid of her at first."
Terry's teeth were rotten and she had pulled out her eyelashes and her hair to cope with the pain she endured
and the years of having nothing to do.
"We got her dentures, a wig and taught her how to wear clothes. She turned into quite a little young lady."
Terry, like Bart, was never taught to use the toilet before arriving at the Behavior Shaping Unit.
Gardner remembers feeling thrilled to be awakened at night by the alarm system that would alert her to a child
leaving their room. "It meant one of the kids was using the toilet, and that was a biggie!"
While a goal of the Behavior Shaping Unit was to reunite kids with their families, most never did because families
had abandoned all hope for their children.
"None of the kids I taught, went home to their families," said Gardner. Some families would visit their children at
the unit once a year during Christmas and bring them a new shirt or something, but would never bring them out. I
think they were scared of them."
The tragedy of only thirty years ago has developed into hope because of the parents who would not abandon
hope for their children, and the professionals who faced the scrutiny and criticism of their colleagues because
they recognized that all children could learn if given the opportunity.
This is a significant part of the history of our nation - a part we would either like to forget or not know about.
As long as our ignorance persists, state hospital cemeteries will still have thousands of unmarked graves for the
people that never made it out of the institutions.
As long as we protect our minds from mistakes of the past, abuse and dehumanization will continue inside
institutions and out.
As long as we don't want to know about history's tragedy, acts of Congress and decisions of the United States
Supreme Court prohibiting unnecessary segregation in institutions, will not keep us from having institutions
anyway.
As long as we live in the bliss of our ignorance, families will continue to receive inadequate support to keep their
children at home, special education will continue to be grossly under funded, and the hope we hold for a better
tomorrow will weaken.
As long as we look the other way, the truth will never set us free.
Thirty years has brought about tremendous change, but we still have a ways to go
Thirty years ago, children with disabilities had no legal right to receive a public education, and families were
encouraged to institutionalize their children in the horrible places described in 1967 by Dr. Burton Blatt as "hell
on earth."
Since, there has been tremendous social change -children with disabilities expect to live and grow up with their
families, receive an education, and as adults, work and live in the communities they call home.
To more fully appreciate how far we've come in a relatively short period of time, I've spoken several times with
Nancy Gardner, Executive Director of North Bay Regional Center in Napa, California.
In 1971 Gardner was a civil rights minded nineteen year old looking for a cause, when she went to work for
Eastern Nebraska Community Office of Retardation (ENCOR) based out of Omaha. ENCOR, started by parents
of children with disabilities, was an innovative organization with a vision that regardless of the severity of a
disability, children could learn skills necessary to live in their communities.
"ENCOR is where I got my first exposure to people with developmental disabilities and it was an opportunity to
use the passion I had as a teenager to make a difference," said Gardner.
Gardner, a college student at the time, was hired to teach and live with eight of the most severely behaviorally
challenged adolescents with mental retardation, ages six to sixteen, in the basement of a sprawling converted old
house in a middle class neighborhood. It was an experiment called the Behavior Shaping Unit.
Gardner's first assignment was to accompany her supervisor to Beatrice State Home and select, from more than
2,000 people, the eight kids with the most profound disabilities and self-abusive behaviors to participate in the
program at the Behavior Shaping Unit.
Gardner's recollection of her first visit to Beatrice was shocking and will always remain vivid in her mind.
"I will never forget the smell, or I should say, the stench. The wards were all overcrowded and most of the people
were naked. Since there were only a couple of chairs on each ward, the people all paced or rocked or laid on the
cold and filthy floor.
"In the sleeping ward, beds were next to one another with barely room to stand up in between and the lights were
blazing 24 hours a day. There was a constant sound of wailing and moaning.
"I saw one woman standing naked in a locked box the size of a coffin, with one tiny barred window. She was
sobbing and begging to be let out. It was heart wrenching.
"One particular image stands out; a bare tiled room with a drain in the middle where about 20 children of various
ages and genders were left for hours on end. Occasionally they were hosed down with cold water by an
impersonal attendant to clean away the urine and piles of feces. Animals in the zoo were treated better."
Children ran up to Gardner begging her to take them away from there.
Bart, ten years old, was one of the first children that would go home with Gardner. He had lived the majority of
his life in Beatrice where the staff kept him from banging his head, a self-abusive behavior commonly acquired
from frustration and boredom, by tying him to a bench with his hands tied to his ankles 22 hours a day.
Even when Bart arrived to his new home, where he was no longer tied up, he would sit with his hands holding his
ankles, as if he were.
"We got him a helmet so he wouldn't hurt himself, and made it fun for him to have the helmet off," said Gardner.
"Over time we saw significant decreases in self-abuse."
Terry was fifteen years old when she came to live and learn at the Behavior Shaping Unit.
"She looked awful," said Gardner. "I remember her so distinctly, she would kneel on all fours and make grunting
noises and sometimes scream like a wild animal. I was afraid of her at first."
Terry's teeth were rotten and she had pulled out her eyelashes and her hair to cope with the pain she endured
and the years of having nothing to do.
"We got her dentures, a wig and taught her how to wear clothes. She turned into quite a little young lady."
Terry, like Bart, was never taught to use the toilet before arriving at the Behavior Shaping Unit.
Gardner remembers feeling thrilled to be awakened at night by the alarm system that would alert her to a child
leaving their room. "It meant one of the kids was using the toilet, and that was a biggie!"
While a goal of the Behavior Shaping Unit was to reunite kids with their families, most never did because families
had abandoned all hope for their children.
"None of the kids I taught, went home to their families," said Gardner. Some families would visit their children at
the unit once a year during Christmas and bring them a new shirt or something, but would never bring them out. I
think they were scared of them."
The tragedy of only thirty years ago has developed into hope because of the parents who would not abandon
hope for their children, and the professionals who faced the scrutiny and criticism of their colleagues because
they recognized that all children could learn if given the opportunity.
This is a significant part of the history of our nation - a part we would either like to forget or not know about.
As long as our ignorance persists, state hospital cemeteries will still have thousands of unmarked graves for the
people that never made it out of the institutions.
As long as we protect our minds from mistakes of the past, abuse and dehumanization will continue inside
institutions and out.
As long as we don't want to know about history's tragedy, acts of Congress and decisions of the United States
Supreme Court prohibiting unnecessary segregation in institutions, will not keep us from having institutions
anyway.
As long as we live in the bliss of our ignorance, families will continue to receive inadequate support to keep their
children at home, special education will continue to be grossly under funded, and the hope we hold for a better
tomorrow will weaken.
As long as we look the other way, the truth will never set us free.
Permission to reprint granted by TheArcLink, Incorporated at www.TheArcLink.org
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