The not so beautiful story of disability history

Rachel Simon speaking at the PACSTX conference in San Marcos, Texas.

Rachel Simon speaking at the PACSTX conference in San Marcos, Texas.

My friend and colleague Rachel Simon was in Central Texas last week to speak before the Providers Alliance for Community Services of Texas, a group that supports nonprofits and companies that serve people with intellectual disabilities.

As usual, Rachel was superb in front of the audience. She is a gifted speaker – one who knows how to tell good stories and elicit strong emotion.  I admire her tremendously.

Most of Rachel’s talk was about her latest book, The Story of Beautiful Girl, a powerful novel about a young man and woman who escape from an institution for people with intellectual disabilities. I highly recommend it, not only for the great story it tells, but also because it draws attention to the terrible conditions that once existed in these institutions.

She also talked about the history of institutional care, which dates back to 1848, when the first facility to house people with intellectual disabilities opened in Boston, Massachusetts. Unbelievably, it was called the Massachusetts School for Idiot Children.

A history that bears repeating

Over the remainder of the 19th century, some 35 such state schools sprang up across the country. Institutionalization really took off in the early 1900s, when the eugenics movement swept the United States and there was a big push to segregate and isolate people who were considered “defective.”

By 1969, there were almost 300 institutions in the United States housing 190,000 people. The institutional movement ground to a halt in the 1970s when the news media began exposing the overcrowding, filth and abuse that occurred in many facilities.

The most notorious media exposé was produced by WABC-TV reporter Geraldo Rivera at Willowbrook State School on Staten Island, New York.  He managed to get inside with a video camera and shoot footage of the deplorable conditions.

Civil rights for those with disabilities

The civil rights movement for people with disabilities took off in the 1970s and by 1980, the first institutions began closing. Today, there are 160 institutions nationwide with a dozen states having closed all facilities. (Willowbrook closed in 1987.)

In Texas, two state schools were closed in the 1990s but 13 remain open.  My Uncle Melrose lived in one of those institutions and like thousands of others, he was able to move to a group home setting.

I was glad that Rachel reminded us about the unhappy history of the institutional movement. It’s good to remember history, unpleasant as it may have been.

I do believe the day is coming when all people with disabilities will live in non-institutional settings and have the chance to be as independent and productive as possible. It can’t come soon enough.

Only God knows his name

‘Life’s a mystery, but so, too, is the human heart.’

These are lyrics from a song titled John Doe #24, written by Mary Chapin Carter after she read a New York Times obituary of a man by the same ‘name.’  He was so called because no one ever knew his identity.

As a teenager in 1945, he had been picked up by police in Jacksonville, Illinois, while he was rummaging through trash.  He was carrying no identification and was unable to speak because he was deaf.  The police sent him before a judge, who deemed him feeble-minded and ordered him committed to the Lincoln State School and Colony.

For the next 50 years, he lived in various institutions, homes and nursing homes. No one ever came looking for him. Authorities never learned his name. Many of his caregivers were convinced that he did not have an intellectual disability.

When Mary Chapin Carter read of his death, she wrote the above-mentioned song, included it in an album and sang it on concert tours. Journalist Dave Bakke, who writes for the Springfield Journal-Review, read about the song and became intrigued with the story behind it.

He eventually was able to secure the man’s records from the state and from those documents, constructed a biography of the man with no name. It is titled God Knows His Name: The True Story of John Doe No. 24.

But that is not the end of John Doe’s story. After Mary Chapin Carter read of his death and wrote the song, she purchased a grave marker for John Doe No. 24’s theretofore unmarked grave.

John’s story inspired another writer Rachel Simon, who happened upon Bakke’s book and felt compelled to write a novel, The Story of Beautiful Girl. One of the main characters in the book is based on John Doe No. 24.  The Story of Beautiful Girl, which was published earlier this year, has been on the New York Times Bestseller List.

Stories like this, while tragic and heartbreaking, also give hope. Few people have been more anonymous than John Doe No. 24. But because he could not communicate and no one claimed him, he was shuffled off to a state school.

He represents tens of thousands of individuals who have lived in obscurity and anonymity in similar institutions throughout history. I have to wonder what human potential has been lost because people didn’t know how to give individuals like John Doe No. 24 what they needed.

I have embarked on a quest similar to that of Dave Bakke, writing a book about my Uncle Melrose, who had a profound intellectual disability and who spent nearly 60 years in a state institution. Like Dave Bakke, I want a once obscure story told. I want people to know what a great person my Uncle Melrose was.

The sibling syndrome – revisited

After my last post about siblings of people with disabilities, my friend Rachel Simon (who wrote the very fine book Riding the Bus With my Sister) pointed out that there is an excellent organization that helps with sibling issues.

It’s called the Sibling Support Project, a nationwide support system for brothers and sisters of people with special health, developmental or mental health needs. The project trains service providers throughout the United States on how to implement the Sibshop program. This program helps siblings know they are not alone with their unique concerns.

Support for siblings of all ages

The project seeks to provide support not only to children but also to teens and adult siblings. An excellent video has been released about the sibling project. It features siblings of all ages talking about the joys and trials of having a family member with a disability.

I am so glad that our society is open enough to talk about such issues and to find ways to help families cope with disabilities. I only wish these services had been available when my Dad was growing up during the Depression.

His younger brother, my Uncle Melrose, had an intellectual disability and at the time, there were no services to help the family. My uncle couldn’t even go to school because there were no special education classes.

A childhood lost

As a result, my Dad — the oldest of five children — was called into service to take care of Melrose. My Uncle, who was nicknamed Pie, was anything but the saying “easy as pie.” He was often frustrated at his limitations and in response, he threw violent tantrums. He couldn’t dress himself and he needed help with almost everything. My Dad became his caretaker.

The situation robbed Dad of much of his childhood. I have often wondered how his life — and Uncle Melrose’s — would have been different if the world had been more open to them.

I’ve wondered what Pie might have learned if he had been able to go to school. And I’ve wondered if Dad could have been more emotionally open if he had been able to be around others who understood his situation.