JOY

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Isolated In America

JOY

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.

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HATE

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Isolated In America

I saw her coming at me from the back of the room. Her red face, furrowed brow, and wrinkled eye brows told me she was angry. I was right. She wasted no time on pleasantries before she unloaded on me with a fury like I had never experienced. The way she saw things, I represented all that was wrong in the world of children with special needs. She made it very clear she hated me and the children under my care.

It was 1976 and for those of us in the business of caring for physically and mentally handicapped children, a mountain had just moved. In November of 1975, Gerald Ford had signed PL 94-142, (also known as the Education for All Handicapped Children Act*). The law required every child be given a free and appropriate education. This applied to all children, regardless of their degree of impairment. It was awesome and humbling to imagine an education for the children I served who had no known abilities.

That night I had finished a presentation to an advocate group telling them about the services my organization offered. Twenty-four hours a day, seven days a week, we provided a comfortable home and professional services for some of the most intellectually and physically handicapped children in Iowa. Our only admissions criteria was that he or she had to be turned away from every other program except a state institution. No child was too handicapped. Put another way, we were a community alternative to the warehousing that took place in state institutions.

During my presentation, I discussed some of the difficulties in determining what “school” meant for severely disabled children. They could not talk, walk, eat independently, or help themselves in any way. What would their classroom look like? This question loomed large over our entire profession. It was a great challenge, but I assured my audience we were up to the task ahead. We considered the new law a great step forward.

I soon learned there was a false belief floating around that providing an education for children like those I served meant taking funding away from less handicapped children. The angry woman was more explicit: “Why do we waste money on children like yours when my two hearing-impaired children can’t get any hearing devices for their classrooms? Those kids of yours are going to die soon anyway; there’s no need to spend money providing them a nice place so they can ‘live like normal people.’ Why bother with education?” She paused momentarily. “Those kids probably shouldn’t have been allowed to live in the first place. They’ll never amount to anything. Why not let them die?”

I was shocked, but my reply was straightforward. “No one appointed me God and until they do, I’ll provide these children the best life and education possible.” The confrontation was over as quickly as it started.

I’d never heard such sentiments before nor have I heard them since. I’m not sure why, but after forty-one years, this memory popped out while I was talking with a writing group about my essay FEAR. Another terrible thought followed. I’ll bet many people still feel this level of hatred toward people they think are getting the money they are entitled to receive. No doubt her kind of hatred for seriously handicapped people lives today. There have always been people who hate others whom they see as diverting money away from the things they want.

Hate was alive and well in America in a past era when handicapped people were considered a tangible threat to the fabric and future of a proper society. While America isolated impaired and handicapped people in crowded institutions, Hitler killed them.

For reasons beyond my understanding, hatred is all in vogue these days. Our country’s leaders evoke it in many of their followers. Give hatred the right voice, and those vulnerable children like I served, the children we’ve fought so hard to make a better life for, could once again become the enemy. Some will see individuals with handicaps as costing society too much. As I write this, essential programs and services are being jeopardized by proposed Medicaid reform. I’m certain that other threats lay ahead and I worry that “let them languish” will be the unspoken mantra of a new generation of haters.

 

* This law was amended and became known as the Individuals with Disabilities Education Act (IDEA) and signed into law by George HW Bush in October of 1990.

America Must Be Kept American

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Anna Olson

America must be kept American” is indeed a patriotic call for tighter immigration rules. But which president had this as a rallying call for immigration reform?

 

Southern and eastern Europeans, especially Italians and eastern European Jews were the “undesirables” back in 1924. When Coolidge signed the Immigration Act of 1924 there was a growing concern that the increase in immigration from these areas was much too high. The new law all but eliminated immigration from those parts of the world.

All the buzz back then was that too many of these people would dilute the American blood line. Which is code talk for a desire to keep America northern European white. These racist views on immigration were encouraged by the Eugenics movement which help mold public opinion in a major way. This is the same movement which encouraged institutionalizing and/or sterilizing mentally or physically handicapped people.

The 1924 Immigration Act is yet another example of why restricting immigration based on race or place of birth is ill conceived. I’m sure you recognize how this topic relates to our 2017 immigration debates. Sadly, history repeats itself.

FEAR

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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.

 

No inspiration here

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Isolated In America

Once in awhile, a quote stands out that expresses the belief of a whole generation. 

On page 14 of his book Humans of New York Stories, Brandan Stanton, author of the wonderful website Humans of New York captured the essence of INCLUSION. On that page you will find the picture of a pretty young lady in a wheelchair. After growing up in an ISOLATED world she explains what INCLUSION means to her. Here is what she said:

“I want to make life easier for people in China who have disabilities. I know what it’s like, because I lived in a Chinese orphanage until the age of ten, and I wasn’t able to go to school because I couldn’t walk. But that’s just a small part of who I am. I want to be a diplomat, and travel, and do all sorts of things that have nothing to do with being disabled. I don’t want people to pity me. I don’t want to be another ‘poor her.’ I don’t want to inspire people. ‘Inspiration’ is a word that disabled people hear a lot. And it’s a positive word to you. But to us, it’s patronizing. I’m not living a wonderful life for a disabled person. I’m living a wonderful life, period. This morning I got accepted into the London School of Economics. Now hold on, let me put on some lip gloss before you take the photo.”

She said it all. Right!

 

 

 

Lest We Forget: From Isolation to Inclusion

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Background / Isolated In America

I’m a relic of sorts. A throwback to the time when words like retarded and disabled were used professionally. In the late 1960’s I was a direct care giver for seriously emotionally disturbed children. Later, I oversaw professional services in a state hospital unit for the mentally retarded. In the late 1970’s I directed two facilities for severely mentally and physically handicapped children. The labels I used above were accepted at the time.  I was a specialist in programs where the people I was responsible for were excludedisolated from society. Like I said, I’m a relic.

My peers and I knew isolation and exclusion were the wrong approach. We worked hard to change the status quo. We tried to move people from living in institutions to residing in the community. That was called it de-institutionalization. Regardless of where an impaired person lived, we fought to upgrade their living conditions. We called that normalization. In school settings, we pushed and pleaded and forced our children into traditional classroom. That was mainstreaming.

The same work continues today only it’s called inclusion, as in giving impaired people the same rights, opportunities, and choices as any other person. As I read about and study the current state of affairs for emotionally, intellectually, or physically impaired people I am thrilled with some of what I see. It seems like everything has changed for the better. Yet after the thrill wears off, I realize impaired people still live in institutions. This time in small group homes, or individual residences hidden away in towns and cities across America. I believe people are still isolated, some excluded from work or educational opportunities. It makes me realize nothing has changed.

Today, my job is to write about the old days, when society believed some people were deviant and genetically passed along undesirable traits. They feared for a country over-run with idiots, morons, imbeciles and cripples. Their fears were unfounded of course. Yet before their mantra of exclusion had run its course, they damaged hundreds of thousands of Americans. I want current day readers to get a sense of how harsh and demeaning it was to live in an institution with its lack of care and stark horror. Why? To remind us all to push forward, expand the boundaries of civil rights. It is my opinion that accepting the status quo is tantamount to sliding back to the bad old days of exclusion and isolation.

I am currently writing a book called Girl On the Edge. The book will explain the forces that led to people being isolated in institutions. The heroine, Anna Olson, is a pretty young lady -isolated and excluded, eventually institutionalized. I’ve already completed one book, an historical novel, Isolated in America, (any publishers out there?) which describes how bad life was in the large institutions of the past. Here, we follow Anna as she fights to survive in one of the largest institutions in America. Hopefully, these two books will help people understand why we can’t give up the progress we’ve made. We have to push forward for more inclusion, less isolation.

Would it be wise to forget about the holocaust? No one would say yes. The old expression is still true, if we don’t know our past, we are bound to repeat it. Hence I think the little phrase “lest we forget” is applicable when it comes to how we treat our fellow human being who just happens to have a limitation or two. We all need to keep working -don’t go back!

Eugenics

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Isolated In America

Eugenics: A combination of the Greek words for well and born.

If the word Eugenics is new to you, join the club, most people don’t recognize it. Today it is seldom if ever used. Still, you know what it means, you know what its end game is; you simply don’t pair the results with the word.

Eugenics is a pseudo-social science started in the late 19th and wildly popular up through the 1930’s. Its’ foundations were based on genetic research by an Englishman named Galton. Although Galton later disassociated himself from the movement, his work was touted as proof the way to improve society was through purifying the gene pool.

Eugenics champions were convinced something must be done to stop the rapid growth of “deficient” people. Their concern was that unless the psychologically, intellectually and physically impaired were dealt with, their offspring would outnumber the good, hard-working, taxpaying, citizens.

They believed they had some solutions, ways to save their society. Institutions were built to isolate people with bad genes. Sterilization was encouraged and sometimes forced on people who had epilepsy, were mentally ill, and the “feebleminded”, to name a few.

In Europe, one individual was paying close attention to this American movement, Adolph Hitler. He saw it as a way to build the master race. You now recognize what Eugenics is and what it ultimately led to.

In my novels, Girl on the Edge, and Isolated in America, I write about Eugenics and what it was like to live in the United States during a time when society deemed many of its own were not fit to enjoy the same freedom the normal, good, white, Northern Europeans enjoyed. Eugenics became a well-accepted norm and we should know about the harm it can cause. Why? So we will be able to recognize it when it reappears. Here we are in 2014 and it is starting to make a comeback.

I will discuss examples of the new Eugenics in future posts.

One Can Never….

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Slow Motion Poetry

The inaugural Slow Motion Poem is;

One Can Never

June

One can never read enough good books.

One can never hear enough good music.

One can never show too much compassion.

One can never have enough green in springtime.

 

July

One can never share enough  joy.

One can never show too much love to your family.

One can never replace the years in a child’s life.

One can never measure the true strength of a family.

 

August

One can never eat enough chocolate.

One can never walk too long in a park.

One can never get enough exercise.

One can never play too much.

 

September

One can never see too many mountains.

One can never soak in too much solitude.

One can never comprehend the vast Great Plains.

One can never hear too many babbling brooks.

 

 

SLOW MOTION POETRY

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Slow Motion Poetry

I know almost nothing about poetry.  I know it can take any number of forms.  Some are pretty darn interesting.  Take sonnets, haiku, rhyming, prose, and micro poetry for examples, although they may be interesting, their complexity scares me to death.  Yet I still wanted to write poetry.  Given my naiveté in this area, for me to write a poem, I need something simple and easy.  So I think I created another form, one I call Slow Motion Poetry, or SLOMOPOEMS.

Every time I tried to write a poem, things soon got awkward.  My mind froze up after a few lines and I would soon forget the whole thing.  Too bad, it sounded so wonderful in my mind.  As I mentioned above,  I think I found a solution for those of us with this problem.

I recently tweeted @kirbyvon “One can never read enough good books”.  I have no idea why I tweeted it.  Perhaps I was thinking I needed to start expounding something to my few, faithful followers.  A week later, I tweeted “One can never hear enough good music.”  The next week brought “One can never show too much compassion.”

The light-bulb flashed.  This might become a poem, one that avoided the pressure of immediately having to come up with another line, a rhyme, or something heady.  There is no need to hurry.  I could take a week to think about the next line.  Additionally, why not keep this type of poetry simple, start every line with the words “One can never”.  In this inaugural SLOMOPOEM the line would be finished by something that you can’t have too much of, something good.  No nasty crap, cheap hits on society and the like, the line has to be positive.

What do you think?

My next insight; why not invite writing friends and family, (sorry family, you are forced to put up with me, it’s an unwritten rule) to e-mail me a line?  I’ll add it to the poem when the time is right.  Would you join me in writing my new kind of poem?  Send me a few words to finish the phrase “One can never……”  I’ll add your line as time and space allow.

How long will this go on?  Why not try a year?  Symmetrical people would like 4 lines per month times 12 months.  This sounds good to me, so the inaugural poem will be 48 lines long.

The idea might be taken up by others who will start their own poems using a different theme and lasting for a different period of time.  Off the top of my head I can think of any number of them; rare things, two of a kind, emotional states, and the question why.  In my poem, there are only two rules; only one line per week, and the lines follow a theme.  Ok three rules, no cussing, or erotica, nothing hateful, nor personal.

I hope you enjoy writing your own SLOW MOTION POEM and if you write your own SLOMOPOEM, please share.  E-mail me at kirby.nielsen@gmail.com.

Update

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Anna Olson

After completing the first draft of the story of Anna Olson in December of 2012, I had a huge document, almost 200,000 words long!  I’m not sure how many pages that translated to but those were a lot of words.  It was cumbersome and wordy and need to be trimmed down.  For one thing, I included un-needed material on Anna’s parents growing up in Norway, how they met, and why they came to the US.  One person commented the story was nice, but what about Anna Olson, my protagonist?  When was I going to get to her?

I cut, pasted, reorganized, removed sections, and divided the story into three major topics.  One section, approximately 85,000 words, described her institutionalized life.  I recognized this as the novel I first set out to write.  Isolated in America was born.  This book has been read by several readers and their comments and suggestions incorporated where appropriate.  I believe I’ve edited and revised Isolated in America to the best of my ability.  Now I begin the search for a publisher.

Another topic (about 60,000 words) described how Anna grew up, the eugenics movement, how society marginalizes people who are different, and why she ended up in an institution. This manuscript is my second novel and called Girl on the Edge.  Currently I am re-reading and editing Girl on the Edge and I hope to be ready to send it out to anyone who would like to read the draft sometime around first of July.

The third topic (approximately 50,000 words) told the story of her life after her discharge.  Right now, this book is known as Breaking Bonds.  After the shackles of institutionalization were broken, Anna was free to realize a potential beyond even her wildest dreams.  I believe the major framework is completed but the first complete draft will likely need to wait until late this year or early next. Be sure to check out the Novel tab on my website www.kirbynielsen.com and get a synopsis for each book.