Home from Purgatory: Freedom, Choice and Life After Christmas in Purgatory

By Judith Daniel Leasure

Shortly after Mom passed, I opened her tiny file on Eddies wrongful death case, she recalls. No one can imagine the pain I felt for Mom and for Eddie, and then it hit me that she must have lived in hell from that time forward. It would be early in 1995 that June would take on the journey her mother had begun on that day she walked into the room in 1973. First there were the calls to the nursing home that still was caring for the boy many now believed was Eddie B. but who was being called Eddie Schabbing. Their response was for her to take her story and her concerns elsewhere, take them to APSI, the states protective service agency.

• Language: English
• Publisher: Xlibris US
• Release date: Jan 20, 2017
• ISBN: 9781524555757

Judith Daniel Leasure

Judith Daniel Leasure is statewide coordinator for Ohio’s Lest We Forget initiative to record and preserve the first-person histories of people who lived in state institutions, their families, professionals, and advocates. She is the writer and coproducer of the audio documentary, Lest We Forget: Spoken Histories along with Jeff Moyer (Music from the Heart) and writer and executive producer of the award-winning film documentary, Lest We Forget: Silent Voices, directed by Mark Lyons. She is a long-time disability rights activist and advocate, including Ohio statewide art exhibits Accessible Expressions Ohio and Art and Soul; the founding of the Developmental Disabilities Hall of Fame, Miami Valley Very Special Arts Festival, and founding trustee of The Brighter Tomorrow Foundation. She is author of Out of the Silence: Stories from a Quaker Life and associate producer of the film documentary, Quakers: That of God in Everyone. Nancy Reder, RN, is a long-time professional and advocate and coauthor of The Gifts of Autism and Alzheimer’s: Stories of Unconditional Love and Self-Determination.

Book preview

Copyright © 2017 by Judith Daniel Leasure. 746094

ISBN:   Softcover           978-1-5245-5576-4

              Hardcover         978-1-5245-5577-1

              EBook               978-1-5245-5575-7

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

This is a work of non fiction.

Rev. date: 01/20/2017

Xlibris

1-888-795-4274

www.Xlibris.com

Image%203%20-%20with%20Paul%20Laurence%20Dunbar%20poem.tif

image from Christmas in Purgatory

I know why the caged bird beats his wing

Till its blood is red on the cruel bars;

For he must fly back to his perch and cling

When he fain would be on the bough-a-swing;

And a pain throbs in the old, old scars

And the pulse again with a keener sting-

I know why he beats his wing!

I know why the caged bird sings, ah me,

When his wing is bruised and his bosom sore, -

When he beats his bars and he would be free;

It is not a carol of joy or glee,

But a prayer that he sends from his heart’s deep core,

But a plea, that upward to Heaven he flings –

I know why the caged bird sings!

Sympathy

Paul Laurence Dunbar

(native son of Dayton, Ohio)

Contents

Acknowledgements:

In Dedication

Prologue:

Chapter 1: Purgatory

Chapter 2: Out of Purgatory

Chapter 3: Home from Purgatory

Chapter 4: Purgatory No More

Acknowledgements:

There is a hell on earth and in America, there is a special inferno. We were visitors there during Christmas,1965. Our Christmas in Purgatory brought us to the depths of despair. We have again been caused to realize that man’s inhumanity to man makes countless thousands mourn." – Burton Blatt, Introduction to Christmas in Purgatory.

The 1966 publication of Burton Blatt’s and Fred Kaplan’s Christmas in Purgatory was an integral part of the national convergence of philosophical, political and societal change in the civil rights movement for people with developmental/intellectual disabilities. The book, with its stark black and white images and the behind the scenes look into the dark world of those warehoused out of sight and out of mind, was a powerful catalyst in the de-institutionalization effort that would continue into the decades following its publication.

A thousand copies of the first edition, published by Allyn and Bacon, Inc., were distributed without charge by parents and friends of those labeled mentally retarded. It was sent to prominent legislators, university scholars and leaders in the advocacy movement. The 1974 edition was published by Syracuse University Press.

We gratefully acknowledge the continuing advocacy and leadership of Syracuse University Center on Human Policy as we share our stories of people who left Purgatory to find new hope, new dreams and new lives in the community. We are indebted for their support in sharing photographs and references from Christmas in Purgatory.

While few in number, the stories within Home from Purgatory are reflective and representative of thousands of stories that could be told from any community in any state in our nation.

We are indebted beyond measure to those whose courage, strength, perseverance, dignity and indomitable human spirit made these stories possible, to those sharing their life stories during and after their time in institutions, as well as those living in the community who, by example, confirm and affirm that we are more alike than we are different.

"Ours is not to place the blame for the past

but to set the course for the future."

-President John F. Kennedy

_____________________

The images and messages within Christmas in Purgatory were not an anomaly that represented the story of only one institution in one state. The book evoked outrage and change because it represented what was happening in institutions in every state in our nation. It was not necessary for us to see images from Ohio, California, Texas or any other state. They would have all looked the same. Purgatory was all around us.

The images and messages within Home from Purgatory are not an anomaly that represents stories from Ohio only. They are stories that are representative of the dramatic political, philosophical and societal changes that have taken place across our nation since the publication of Christmas in Purgatory.

The stories in these pages are replicated in homes, neighborhoods, cities and states across our nation, giving us reason to celebrate just how far we have come together in our journey, always hopeful, yet always cautious – lest we forget.

Home from Purgatory is the third in a series of Ohio-based productions to chronicle the first-person stories of people who lived in state institutions, the stories of their families and pioneering professionals and advocates, as well as those who struggled to find their place within their own communities. We are indebted to the Ohio Historical Society for the depth and breadth of their archival history of state institutions.

Film Documentary

Lest We Forget: Silent Voices was directed by filmmaker Mark Lyons and written and produced by Partners For Community Living (Judy Leasure, Executive Producer), with support from organizations and individuals across Ohio dedicated to preserving a little known part of the civil rights movement, while recognizing and honoring the history of those who survived Purgatory and who continue to build more inclusive communities. Following premieres at Wright State University in Dayton and in New York City, the film is in national distribution by Icarus Films (www.IcarusFilms.com).

Audio Documentary

Lest We Forget: Spoken Histories is a 2 CD audio documentary presented in chapter style co-produced by Jeff Moyer: Music from the Heart, and Partners For Community Living (Judy Leasure.) It features stirring and inspirational music by Jeff Moyer. It is available at www.partnersohio.com.

In Dedication

It is time for history to unfold, not the history as we know it to be in textbooks, filled with dates and places to memorize. It is history as it can be told only by those who lived it. It will at times be a difficult history for us to read. We may want to turn away, to not have the words disturb us – to not have the faces haunt us.

Most of us do not expect to shed tears when we open a book – and tears there well may be, for this is a history of human suffering at its darkest and of loss at its deepest.

Most of us do not anticipate anger as we turn page after page – and anger there well may be, for this is a history of injustice based on fear and prejudice and of inequality based on stereotypes and labels.

Most of us cannot contain our joy when we read something that touches us deeply – and joy there surely will be, for this is a history of our humanity – of how strong our will to survive is – of how powerful our ability to learn and to change is – of how forgiving our spirits can be – this is a history of homecoming.

If, as you move from page to page, there be tears, do not push them aside or deny them, so that we may never again push aside or deny anyone we see as different than us.

If there be anger, let it be righteous anger that leads us to advocacy and to action, now and into the future, so that all may be independent, accepted, included, valued.

If there be joy, let us acknowledge it, applaud it, celebrate it – unafraid of the expression of our humanity that is but one of the gifts that has come to us through this shared journey out of Purgatory.

Let us do all of this in honor of the thousands who teach us about tolerance and acceptance by the lives they lead. Do this in remembrance of the thousands whose freedom came only in death, who lie in abandoned grounds in unmarked graves where no flowers are ever placed. Do this in community and in homecoming for all those whose voices from across a changed and changing nation are represented in the stories within these pages.

Home from Purgatory: Freedom, Choice and Life after Christmas in Purgatory is dedicated to those who came home from Purgatory to share their stories, to those lying in forgotten places who call on us now to never forget – to always remember the ultimate sacrifice they paid; to the mothers and fathers and brothers and sisters who have left us a legacy of dogged determination in the face of injustice and inequality and those still speaking for their children and the children of others; to so many unnamed professionals and advocates who walked into Purgatory and closed it down, who feared for their own safety during zoning hearings, those who serve and advocate today, knowing the struggle can never be over – Lest We Forget and doom others to walk again into Purgatory.

Prologue:

Home from Purgatory: Freedom, Choice and Life after Christmas in Purgatory is a deeply felt and moving account of the history of services for people with intellectual and developmental disabilities, as illustrated by stories from in and around Ohio.

Home from Purgatory also weaves together some of the national movements in the changing approaches to services for people with intellectual/developmental disabilities from their direct and lived experiences – as users of services, as family members, as advocates and state officials and providers.

The original photo exposé, Christmas in Purgatory, shockingly documented the inhumane conditions of institutionalization for the generations of us who were drawn to the field of disabilitiy as a civil and human rights issue. Home from Purgatory provides a wrenching chronicle for younger generations to understand this not-so-distant past, while celebrating the lives of individuals who made change and those who lived through such difficult circumstances and now are living lives of community and contribution.

The power of advocacy, caring and the resilience of the human spirit resound throughout this volume.

Deborah M. Spitalnik, PhD.

Executive Director, The Boggs Center on Developmental Disabilities

Professor of Pediatrics, Rutgers Robert Wood Johnson Medical School

New Brunswick, New Jersey

"I was with the Arc of Summit Portage County and Ray Thomas (Arc Director) and I went to Columbus State Institution for a meeting in 1977. Upon entering the grounds, there was this huge concrete sign that read:

STATE INSTITUTION FOR IMBECILES, IDIOTS AND MORONS

That was just an overwhelming statement to me."

-Jean Tydings, Arc of Summit/Portage County, Citizens Advisory Committee for Apple Creek Institution - Lest We Forget documentaries

"Staff would teach individuals that lived there to call other people nicknames. I remember one person was referred to as a pinhead because they (staff) had taught all the other people who lived with him to call him pinhead. He did in fact have a very small head. But it wasn’t really funny. It wasn’t really - it was for some people, but it wasn’t funny to see that."

-Barbara Jones, Apple Creek Developmental Center

Lest We Forget documentaries

There are too many who know that words have the power to haunt, hurt, wound, scar and alter the very spirit of who we are. Within the pages to follow there will be many of those words, used as they were used during a particular time and place in history. They are included here as they were used then, not to shock or offend but only as they reflect a particular point in history as told by the people who lived it.

Bear witness now to this collection of stories and articles from a part of the civil rights movement for people with intellectual/developmental disabilities, as told through first-person stories from people who lived in state institutions, families, professionals and advocates as shared in the Lest We Forget: Silent Voices film documentary and the Lest We Forget: Spoken Histories audio documentary. Follow the journey out of Purgatory from places with names like Willowbrook, Pennhurst, Orient and more.

Meet mothers, fathers, and advocates who recount decades of history as shared in their interviews for Home from Purgatory - stories of love and legislation, change and courage, hope and home. Celebrate the lives of those living in our communities today.

Read perspectives from leading voices on behalf of people with intellectual and developmental disabilities, in articles as relevant to the future as they were when written for Home from Purgatory.

Chapter 1 Purgatory

Historical background on some of our nation’s most infamous institutions and first-person stories of people who lived in institutions, as well as stories from their families, advocates and professionals.

Image%204%20-%20Purgatory.tif

image from Christmas in Purgatory (1960s)

Christmas. It wasn’t Christmas. It was just like maybe having dinner or breakfast and lunch, maybe watching TV. No where to go but there. They never changed. It wasn’t Christmas there. It was just like a nightmare. When they say they got rid of Orient it was a blessing because nobody never knew what happened in them places. Until they hear it from people that’s been there and suffered. It was just a shame to have a place like that and nobody didn’t care. Nobody to listen to them. They didn’t have nobody to cry to …. nobody to cry to.

James Tuck, on being a ‘patient’ at Orient State Institution

Lest We Forget documentaries

image1.tif

Her little toes would be so chafed I had to pull them apart. Her long hair was so matted I had to cut it short. - a Willowbrook mother

Its very name lives in infamy. One reporter (Geraldo Rivera) would use a stolen key to gain entry into this Purgatory, with his resulting documentary,