I Remember

A pen and paper

Trigger/content warning: derogatory language, institutionalization, dehumanizing treatment.

My name is Carol Quirk. I’m the Chief Executive Officer of the Maryland Coalition for Inclusive Education and a former Board Member of the Autistic Self Advocacy Network. While the majority of my career has been devoted to advocacy and organizational capacity building for including people with disabilities in their own communities, it began with exposure to institutionalization practices, which – while diminishing here in the US – continue to exist in many other parts of the world.

It is worth noting that 3% of the overall school age population of students with disabilities are served in segregated schools or residential settings. However, almost 8% of students with autism are completely segregated or removed from their homes, as are 4% of Black students with disabilities. While 13.5% of students with disabilities are educated in self-contained special education classes, away from their nondisabled peers, 33% of students with autism are educated in segregated classrooms, as are 17% of Black students. Discriminatory and restrictive practices continue.
(Source: U.S. Department of Education, EDFacts Data Warehouse (EDW): “IDEA Part B Child Count and Educational Environments Collection,” 2015-16. Data extracted as of July 14, 2016 from file specifications 002 and 089.)

I remember.

When I was a young psychology student fascinated by the science of learning, helping my professor with his research on using behavioral methods to teach deaf and blind youth to discriminate shapes. I was instructed to give them a candy when they paired one shape with the correct one in a succession of 3 alternate shapes. They lived in a residential institution and were our “subjects” for this experiment: figuring out if they could actually learn. This was Mansfield “training school” which did not offer training and was definitely not a school. What in the heck did they do when I did not see them? What was their life?

I remember.

Southbury Training School, built in the late 1930’s in Connecticut as home for individuals with intellectual disability. I remember folks who rocked, had things to twirl… I was retained to help develop behavioral programs to increase their participation… I remember that there were people designated as “low grades” and “high grades” based on their perceived abilities. I remember well-meaning staff but more importantly the people who were hosed down to be cleaned off and those who had only spoons to feed themselves. I am so sorry.

I remember.

Willowbrook – where in New York a lawsuit moved to improve conditions, but in an evaluation of the changes, we still saw many residents THERE with minimal humane changes.

I remember.

I remember Gina. I can never forget her. North Carolina. I met her when she was in a 24-hour restraint (ok, they gave her an hour off- 23 hours). We/I realized that she functioned in cycles and if we prevented her from hurting herself in those extremes, she would… get out of it! So, our job was to help her work through the bad times, to get to the good ones. She changed. She dressed, went to school, had a life of social interaction. She laughed. I left. They… the minders… forgot. She died in an episode that could have been prevented.

I cannot forget.

Rosewood – an institution in Maryland. It was supposed to be a classroom that was innovative on an institutional campus. Not even a possibility! A student came to the classroom with his shoes soaked with urine. WHAT WERE THE RESIDENTIAL FOLKS THINKING! How horrible for this young man… I’m sorry.

I remember and will never forget.

It was Boston at a gathering of people who use facilitated or alternative communication systems. Autistic people, most of whom had limited traditional communication had a lot to say, and were heard. I saw, felt and listened as I understood how many of the people I had met who were treated inhumanely had been without a voice, without support, without dignity. What had we done as a humanity? I still struggle with knowing what we, as a society, did for so many years and how far yet we have to go.

Never again. We must never do this again.