HISTORY'S TRAGEDY AND HOPE, PART I
I often share the experiences of my son, Ben, an eleven-year-old boy, and the life he leads as an included
member of his community. Ben's life is testament to what is possible for people with disabilities to achieve, and
without doubt, the driving force behind the message of what I write.
The severity of Ben's disabilities causes him to be only a crisis away from being forced to live in a state-run
institution, nursing home, or other kind of large congregate facility.
Current public policy is not strong enough to prevent such a tragedy from occurring.
At times, I am left very frustrated with the lack of general acceptance and appreciation for people with disabilities,
an attitude too often reflected in the actions of our policymakers, the media, employers, teachers, and even
parents. It leaves Ben's life hanging in the balance and I don't like it much.
Consequently, I am always looking for better ways to constructively challenge these attitudes, and with the
persistent influence of friends and my teenage daughter, Michelle, I have come to understand that history has a
more significant role to play than I was previously willing to acknowledge.
Recently, Michelle reminded me that as long as she has been in school she has learned along side kids who are
Jewish, African American, and Japanese. She has learned of their heritage, culture and what they were forced to
endure. Michelle has studied; Nazi Germany and the slaughtering of the Jews, slavery, Martin Luther King and
the Civil Rights Movement, the attack on Pearl Harbor and the subsequent bombing of Hiroshima.
Yet, Michelle and her classmates have not been given an opportunity to understand history in its treatment of
people with disabilities like her brother, Ben.
"Mom, we have never been given a chance to appreciate their existence as we have the others."
I was deeply affected by the wisdom of my daughter's words causing me to more closely examine how we cared
for people with disabilities only thirty years ago. The undeniable truth is reflected on the pages of "Christmas in
Purgatory," a photographic expose of America's institutions by Dr. Burton Blatt, founder of the Center on Human
Policy, Syracuse University.
I can see images of my son on every page, as I knew I would. The very reason I have avoided it until now.
It was only in 1967 that Dr. Blatt wrote, "Now I know what people mean when they say there is a hell on earth," in
describing his tour of four Eastern state-supported institutions for the mentally retarded.
In the October 31, 1967 issue of Look magazine an article appeared entitled "The tragedy and hope of retarded
children," by Blatt with Charles Mangel, Look Senior Editor. The article was adapted from "Christmas in
Purgatory," in which Blatt advocated for humane reforms in America's institutions.
The following excerpts from the Look article my children and I retrieved from our library archives give only a
glimpse of the horrible truth.
"The institutions I visited, located in three different states, are huge repositories for human beings. The largest
contains some 6,000 adults and children. The smallest, about 1,000 of all ages. It is the sight of the children that
tears at you."
"Children are tied down. I saw many whose hands or legs were bound or waists secured. One boy, tied on the
floor to a bench leg, was trying to roll away from a pool of urine. He could not."
"Countless human beings on rows and rows of benches in silent rooms, waiting for - what? One or two
attendants stood in each room. Their main function was to hose down the floor periodically to drive wastes into a
sewer drain."
"I don't want anyone to think that we are discussing just these four homes. They are the symbol of national
disgrace."
And, it wasn't that long ago.
According to Dr. Steve Taylor, current director of the Center, by the 1970's, Blatt had concluded that the effort to
reform institutions was hopeless. Thus, he wrote in his 1979 book, The Family Papers: A Return to Purgatory, "If
there is any hope in what we have learned in our examination of institutionalization, it is not in any improvement
of institutional life-imprisonment and segregation can be made more comfortable, but they can never be made
into freedom and participation."
History and the enormous societal changes taken place over the past thirty years are crucial to a better
appreciation of the existence of people with disabilities and their participation in the mainstream.
Next week's Disability Matters, will be a glimpse of Nancy Gardner's beginnings in the field of developmental
disabilities. She was nineteen years old in 1971 when she went to work for Eastern Nebraska Community Office
of Retardation based out of Omaha.
At that time, professionals were starting to explore different methods of treating and teaching kids with
disabilities, and were finding that even kids with the most severe disabilities were capable of learning skills that
would enable them to live outside an institution and in the community.
"The successes were tremendous," said Gardner, Executive Director of North Bay Regional Center
I often share the experiences of my son, Ben, an eleven-year-old boy, and the life he leads as an included
member of his community. Ben's life is testament to what is possible for people with disabilities to achieve, and
without doubt, the driving force behind the message of what I write.
The severity of Ben's disabilities causes him to be only a crisis away from being forced to live in a state-run
institution, nursing home, or other kind of large congregate facility.
Current public policy is not strong enough to prevent such a tragedy from occurring.
At times, I am left very frustrated with the lack of general acceptance and appreciation for people with disabilities,
an attitude too often reflected in the actions of our policymakers, the media, employers, teachers, and even
parents. It leaves Ben's life hanging in the balance and I don't like it much.
Consequently, I am always looking for better ways to constructively challenge these attitudes, and with the
persistent influence of friends and my teenage daughter, Michelle, I have come to understand that history has a
more significant role to play than I was previously willing to acknowledge.
Recently, Michelle reminded me that as long as she has been in school she has learned along side kids who are
Jewish, African American, and Japanese. She has learned of their heritage, culture and what they were forced to
endure. Michelle has studied; Nazi Germany and the slaughtering of the Jews, slavery, Martin Luther King and
the Civil Rights Movement, the attack on Pearl Harbor and the subsequent bombing of Hiroshima.
Yet, Michelle and her classmates have not been given an opportunity to understand history in its treatment of
people with disabilities like her brother, Ben.
"Mom, we have never been given a chance to appreciate their existence as we have the others."
I was deeply affected by the wisdom of my daughter's words causing me to more closely examine how we cared
for people with disabilities only thirty years ago. The undeniable truth is reflected on the pages of "Christmas in
Purgatory," a photographic expose of America's institutions by Dr. Burton Blatt, founder of the Center on Human
Policy, Syracuse University.
I can see images of my son on every page, as I knew I would. The very reason I have avoided it until now.
It was only in 1967 that Dr. Blatt wrote, "Now I know what people mean when they say there is a hell on earth," in
describing his tour of four Eastern state-supported institutions for the mentally retarded.
In the October 31, 1967 issue of Look magazine an article appeared entitled "The tragedy and hope of retarded
children," by Blatt with Charles Mangel, Look Senior Editor. The article was adapted from "Christmas in
Purgatory," in which Blatt advocated for humane reforms in America's institutions.
The following excerpts from the Look article my children and I retrieved from our library archives give only a
glimpse of the horrible truth.
"The institutions I visited, located in three different states, are huge repositories for human beings. The largest
contains some 6,000 adults and children. The smallest, about 1,000 of all ages. It is the sight of the children that
tears at you."
"Children are tied down. I saw many whose hands or legs were bound or waists secured. One boy, tied on the
floor to a bench leg, was trying to roll away from a pool of urine. He could not."
"Countless human beings on rows and rows of benches in silent rooms, waiting for - what? One or two
attendants stood in each room. Their main function was to hose down the floor periodically to drive wastes into a
sewer drain."
"I don't want anyone to think that we are discussing just these four homes. They are the symbol of national
disgrace."
And, it wasn't that long ago.
According to Dr. Steve Taylor, current director of the Center, by the 1970's, Blatt had concluded that the effort to
reform institutions was hopeless. Thus, he wrote in his 1979 book, The Family Papers: A Return to Purgatory, "If
there is any hope in what we have learned in our examination of institutionalization, it is not in any improvement
of institutional life-imprisonment and segregation can be made more comfortable, but they can never be made
into freedom and participation."
History and the enormous societal changes taken place over the past thirty years are crucial to a better
appreciation of the existence of people with disabilities and their participation in the mainstream.
Next week's Disability Matters, will be a glimpse of Nancy Gardner's beginnings in the field of developmental
disabilities. She was nineteen years old in 1971 when she went to work for Eastern Nebraska Community Office
of Retardation based out of Omaha.
At that time, professionals were starting to explore different methods of treating and teaching kids with
disabilities, and were finding that even kids with the most severe disabilities were capable of learning skills that
would enable them to live outside an institution and in the community.
"The successes were tremendous," said Gardner, Executive Director of North Bay Regional Center
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