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Isolated In America


Joy is the emotion evoked by well-being, success, or good fortune or by the prospect of possessing what one desires. A synonym, delight.

Mirriam Webster Dictionary

Noreen’s classroom was next to my office. I heard one of her teachers ask her a question: “Do you want to go outside?” The teacher wasn’t prepared for what happened next. Noreen slowly pulled her head to an upright position then let it fall forward. Not quite sure of what she just seen, the teacher asked Noreen: “Was that a yes?”

When she once again pulled her head upright and let it fall forward, the teacher knew something wonderful had happened. I’m not sure if it was a scream or a shout that came from her but it got my attention. Seconds later I realized it was an expression of pure, unadulterated JOY. That day, my staff and I felt an elation that’s better than finding gold. It was the JOY of discovering a person inside the twisted and frozen body of a girl with Cerebral Palsy.

If you’ve read my essay on HATE, you may recall that in 1976, I was the director of a residential facility and school for very severely impaired children. Most of our children had no known abilities. They needed total care and were unable to communicate with the outside world. That is until that one afternoon when Noreen finally gained enough neck strength to give very slow, painful looking nods. For the first time in her life, she answered a question with an affirmative head nod. For the first time, we knew she had cognitive awareness, she understood. What a thrill we all felt.

Noreen came to our facility the same way most of our children arrived -her parents were desperate. She was living in a nursing home and their staff were planning on putting a feeding tube in her stomach. They said that feeding Noreen with a spoon took too much time. Her parents were opposed to the feeding tube and needed to find another place for her to live.

They were right. Imagine the psychological and physical harm of doing this to any teenager. For Noreen, the nursing home placement was nearly fatal. She was the only young person among elderly people. She received no age appropriate stimulation or therapy. No one was willing to take the time to help her eat properly.

At her admissions meeting our nurse described her status as near death. Failure to thrive was the only diagnosis that fit. Her prognosis was poor but we admitted her anyway. Noreen was exactly the type of person we served, someone who was one step away from a large state institution, or death. The day she arrived she was ashen, thin, and her skin was like a blanket over bones.

She had one especially difficult problem, a tongue thrust. If her tongue were stimulated for any reason she pushed it forward and out of her mouth. Unless food or liquids were given to her properly, it came back out. To help her eat, our staff had to push food way back, past the point where it could come out but not so far that she would choke. Eating this way took a long long time and required practice and patience.

At first the staff complained. “It takes so long to feed her we can’t get our other work done.”

“Find a way” I said. “Noreen’s going to eat with everyone else and she’s going to eat the same food (pureed in a food processor) as everyone else. I don’t care how long it takes.” Slowly, painfully, we got her to eat. She put on weight and her color returned.

1976 was our nation’s bicentennial anniversary. For impaired children however, it was year one of their receiving the same rights to an education as a non-impaired child. That in and of itself was a cause for JOY. For Noreen, a “free and appropriate education” as was required by the new Federal law included physical therapy, music therapy, and activities designed to stimulate her senses. She was going to school for the first time. Her Individual Education Plan (IEP) wasn’t addition or spelling, it was to give her the ability to control her neck muscles enough to nod her head to answer questions.

Within a few days of her first communication, we realized Noreen had been learning all along. She knew the alphabet, basic math, words, and more abstract concepts, all without the benefit of formal classwork.

Most people go through life not knowing if what they did really mattered to someone else. I count myself as one of the lucky ones. I know what it feels like to be part of a team that created an environment that allowed someone to become a person who could communicate with the world. That is my JOY.

If Noreen were alive, she would be in her mid-fifties. She would interact with the world via eye movements that control a language board which would either speak for her or create written words on a screen. If she had received the health care, training, and assistance technology she deserved, she could possibly be employed as a project manager -or a newspaper editor.

I doubt it’s possible for us to understand Noreen’s life. To be a thinking, understanding, feeling person trapped inside a body that doesn’t move, would be indescribably frustrating. There was no way for us to understand her JOY when she broke through. But, I’d like to think it was thrilling. I’m thankful I was there to share that JOY with her.

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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