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.