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Isolated In America

On November 9, 2016, I woke up for my usual two am bathroom call and a snack. What was unusual that morning was my curiosity regarding the election results.

I recall watching the TV the night before as talking heads and pundits grew pale and nearly speechless as the election results came in. I admit it was fun watching those who like to tell us what to think and believe being confronted with their limitations and biases. Trump was leading but I was sure the results would change when all was said and done.

I turned on my iPhone and in the bright glow there were two headlines. One was from USA Today, the other from Bloomberg and both announced Trump’s win. I stood in our dark kitchen thinking surely it wasn’t true. My disbelief very quickly turned into anxiety. I had a hot flash followed by a slight turn of my stomach. I felt a tightness in my chest  –the sensation was fear. Why fear? I hadn’t felt fear in years! Why would a presidential election elicit such a visceral response? Maybe the answer could be found in my past.

My first career was working with severely emotionally disturbed children. After obtaining my master’s, I worked with institutionalized developmentally and intellectually impaired children and adults. I often witnessed the detrimental effects institutions had on human beings. At that time, my passion was deinstitutionalizing residents which meant finding them community services.

Now, some thirty plus years later, my new passion is researching and writing about a time in American history when civil rights were denied to nearly every disabled American. They were denied services and opportunities that intellectually and/or physically impaired people take for granted today.

In the early to middle part of the 20th century, forced institutionalization, sterilization, isolation, and even lobotomies were commonplace for hundreds of thousands of Americans. How did these horrible things come to be? The answer was a domino effect. One small abuse of their rights expanded to even more significant abuses. Ultimately, impaired people were believed to be a threat to our society.

Looking back, I wonder if my fear was the same fear Carrie Buck felt when she learned she had lost her Supreme Court case (Buck v Bell). The decision led to her mandatory sterilization. She was labeled as “feebleminded” and incapable of producing offspring that would be fit for society. The date was May 2, 1927. The ruling ushered in a whole new era of compulsory sterilization.

Standing in the early morning darkness, I wondered. Was this the same fear parents of mentally handicapped Germans experienced in 1940? In the 1930s they accepted mandatory sterilization of the genetically “unfit.” Then they accepted forced institutionalization. However, they were horrified to find in 1939 little children were being euthanized. Soon to follow were the teenagers, and finally the adult handicapped. By January 1940 World War II had just broken out and the first mass gassing of adults deemed racially or genetically unfit began at the now infamous 4 Tiergartenstrasse in Berlin. The dominos fell hard.

Perhaps my fear was the same fear a teenage Minnesota girl felt in 1933 as she waited for a judge’s word on whether she would be allowed to stay with the foster parents she loved. The answer was no, instead she was forced to live in a large state institution. I met this woman after she had been institutionalized for over forty years and against all odds, I found her to be normal in every respect. The story of her life became the material for my two novels.

America eventually found its moral compass with the expansion of services and rights for the disabled. Federal laws such as the Americans with Disabilities Act and IDEA demonstrate how far we’ve come. Still, there’s much left to do to ensure a disabled person gets the same treatment as their able-bodied neighbors.

I’m still afraid today; writing this essay makes me anxious. I fear for the erosion of disability rights. Like America in the early 20th century and Nazi Germany in the 1930s, will we see a gradual worsening of the quality of life for those who are least able to fight for themselves?

The whole country watched a campaigning Mr. Trump mock a disabled reporter. I believed this was a sign that he thought the reporter was less than an equal. Then came an onslaught of actions that leave me no room for optimism when it comes to the rights of those who need the most help. In ways I don’t totally understand, I have a core belief that the current political climate signals the return of harsh times and fewer services for intellectually or physically impaired citizens. I fear for a return to putting people in institutions.

I pray for some sign I’m worrying about nothing. So far, no luck. I’m still afraid the first domino will soon start to fall.


The Author

My goal is to write excellent novels about impaired people who suffer from unjust treatment. I hope is that my work will inspire the disability community to move forward. Any status quo would make it easier to go back to the dark days of institutionalization and isolation.

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