Deinstitutionalization and Dr. Martin Luther King, Jr.   3 comments

Human progress is neither automatic nor inevitable… Every step toward the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals.

–Dr. Martin Luther King, Jr.

The work of Dr. Martin Luther King, Jr. in bringing about massive social change extends well beyond his accomplishments in securing civil rights for African-Americans.  Not too long ago, it was the norm for people like my daughter Skylar to be sent to what were known as state schools.  These places weren’t actually “schools” but extremely overcrowded, taxpayer-funded warehouses that stockpiled people with special needs while providing little to no therapeutic or educational activity but plenty of squalor, violence, and sexual assaults for them to endure. Staff-to-student ratios were sometimes as high as 1:40 and as many as thirty kids would be crammed into one room.  Human waste filled the hallways and only the strongest and/or most fortunate ate with regularity.  Civil rights?  Human beings in state schools weren’t even treated as human. It wasn’t until Dr. King’s struggles during the Nineteen Sixties provoked national dialogue about equality for all citizens and changed the hearts and minds of millions that the road was paved for another, lesser known movement which took place in the Nineteen Seventies: the deinstitutionalization of people with special needs.

Dr. Martin Luther King, Jr. positively impacted the lives of millions of people, including those with special needs.

Dr. Martin Luther King, Jr. positively impacted the lives of millions of people, including those of people with special needs and their families.

There are books and websites that can educate anyone interested in what took place inside state schools. For this blog, I will share the stories of three amazing people I know who survived them.  The first is of a feisty, engaging man named Doug.  Doug had Down syndrome. He’d been born prematurely in the Nineteen Thirties and was so underweight that doctors simply threw their hands in the air and sent him home with his mother to die.  But it didn’t happen.  Against all odds, Doug’s mother nursed him to health with an eye dropper.  To her, Doug was a miracle but, to me, his survival was more about a great mother’s will than divine intervention.

When Doug reached school age, doctors and education administrators alike strongly suggested his mother send him to a state school to live so he could be “properly cared for.”  It’s easy for us now to question why parent would even consider doing such a thing but, back then, practically every parent of a kid with special needs chose that route. Plus, she figured, who was she to ignore the advice of experts?  Again, very few people in her position did.  She loved her son with all her heart and only wanted what was best for him so she agreed to send him away. Of course, like the majority of those other parents, she had no idea of the horrors awaiting her child.

Doug’s smallish stature and innocent nature made him a prime candidate to be victim to any variety of assaults by predatory staff persons and/or other students with special needs who’d become products of their hideous environment.  But it didn’t happen.  Against all odds, Doug was eventually discharged relatively unscathed during the deinstitutionalization movement.  For the second time in his life, though, his survival wasn’t due to a miracle but the will of an incredible person who loved him.  In this case, the person was Charlie, a then-young man about ten years older than Doug who’d been institutionalized around the same time.

Charlie was sent to the state school after stealing a car, an act chalked up by the experts to his need to be institutionalized.  While this was tragic for Charlie, who likely had an IQ well above the threshold for mental retardation, it proved to be a lifesaver for Doug.  Charlie protected Doug from being brutalized like he was his brother.  Unfortunately, I can’t say that Charlie was as fortunate as his little buddy in regard to being shielded from abuse inside the state school.  His haunting silence beyond an occasional polite “yes” or “no” towards anyone who wasn’t Doug and faraway stare told a story that probably indicated otherwise.

Life inside of state schools for people with special needs was not pretty.

Life inside of state schools for people with special needs was not pretty.

Doug and Charlie both passed away over fifteen years ago.  Doug led what felt like a fairly happy existence after being discharged, moving into a supportive group home with people who cared deeply about him and visiting his mother on weekends even as she neared the age of ninety.   I don’t know how Charlie’s life went because he was so guarded.  I do believe, on balance, his existence was an extraordinary one because he saved Doug.

                 Allowing and/or committing rapes, beatings, starvation, and the spread of diseases weren’t the only atrocities perpetrated by those entrusted to care for the lives of people with special needs in the decades leading up to deinstitutionalization. Bob (previously written about here http://www.autismresourcecentral.org/What-We-Offer/Online-Community/blog/my-friend-bob) endured a different type of inhumane treatment after being sent to a state school at the age of seven for being “a slow learner.”

“They asked me to join the Science Club but we never did any experiments, we just ate oatmeal,” he recalls.  This was because Bob and his fellow students were the experiment.  “They put radon in the oatmeal and fed it to us to see what would happen.”  Fortunately, Bob didn’t suffer many health effects but his best friend Walter, who was also victimized, wasn’t as lucky. “The poor guy was always sick until the day he died,” Bob remembers.

Walter passed away before the deinstitutionalization movement took place but Bob, after years of terrible residential placements, has finally found peace late in life with a provider he admiringly calls “The Boss.”  His days are filled performing volunteer activities mostly agreeable to him with friends at his day hab while juggling a number of female admirers throughout Central Massachusetts.  He even has a cellphone that he won’t put my name into because I am, after all, male.

Bob survived years in a state school to not only thrive late in life but to also provide a lesson to people everywhere of how to be cool.

Bob survived years in a state school to not only thrive late in life but to also provide a lesson to people everywhere of how to be cool.

I would never suggest Bob, Doug, Charlie, or anyone else was lucky Dr. King came along when he did because nobody forced to spend a significant part of their life in what amounted to Hell can be considered lucky in any way, shape, or form. But Dr. King’s sacrifices, vision, and leadership sparked the movement which ultimately freed people with special needs who were confined to state schools a lot sooner than it would have otherwise and, for that, I thank him. And I also thank Doug, Charlie, Bob, and everyone else forced to endure what they did for persevering.  Your bravery allowed people like my daughter the chance to lead a normal, productive life filled with love and free from abuse years later.  Like Dr. King you, too, are true American heroes.

Skylar 2012 Book 21

Posted January 20, 2014 by seandal in Autism, MLK, special needs

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3 responses to “Deinstitutionalization and Dr. Martin Luther King, Jr.

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  1. Wonderful reminder of how grateful we should all be to those who have paved the road to where we are now. I remember with heartache your writing about Bob in the ARCCM newsletter. His is truly an amazing story. Thank You Sean for bringing this awareness to the minds of everyone today. Maybe in doing so it will spark an interest in people with non disabled family to consider providing a home or becoming an AFC provider to one of these amazing people.
    I am grateful to Sue Loring. She doesn’t realize what a great emotional support she was when John was newly diagnosed and the center was in its infancy with nothing more than a few bookshelves of books and some VHS tapes. It was my visits to that office and bumping into Sue, with Ed usually sitting and playing on one of the computers while she worked, that helped me keep plodding along and persevering through the tough road that lay ahead. She was a wealth of information but more than that, there was that genuine concern and kindness she expressed every time I visited.

  2. Thanks for your kind words and reading, Annette! I think the plight faced by people with special needs years ago is often overlooked , as are all the people Dr. King helped.

  3. Reblogged this on Diamond Is the Sky.

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