AMERICAN ISOLATION IS HERE

December 14, 2021
by Kirby
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Anna Olson / Background / Isolated In America

THE long-awaited sequel to my first book, American Genes is now available. American Genes ended with poor Anna Olson on her way to a state institution called Helmhurst. It wasn’t a cheery proposition because it would separate her from the only two people left in her life who loved her. Here is the back cover description of this new and exciting book.

BUY BOTH BOOKS HERE

America has a dark past of isolating and sterilizing the “unfit”; will the nightmare ever end?

     In 1933, Anna Olson is terrified by the unknown. At age 16 she is committed to a large state institution, and labeled as epileptic and “feebleminded,” both which she knows are wrong. Anna discovers a group of girls her age with epilepsy who help ease her fears.

     Together they adapt, learning that life is hard with physical and mental dangers at every turn. But they are not alone; the young women join over a thousand other patients working long hours at menial jobs. As she struggles to find her way out, to be free, she sinks deeper into the chaos, noise, and heartache that comes with living in a large institution.

     A mysterious man preys on Anna and her friends, eventually raping two of them. Administrators lie to them, promising them discharges if they agree to become sterilized. As the years pass, the accumulated pressure of confinement in close quarters with thousands of people takes a toll on Anna’s mind and body. Still, she never loses hope that someday her nightmare will end.

     In American Isolation by Kirby Nielsen, the reader lives with Anna Olson in Helmhurst, one of the large, horrible institutions from Americas’ recent history.

BUY BOTH BOOKS HERE

Words That Hurt: Don’t Say The R-Word

August 14, 2021
by Kirby
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Background

UPDATED 08.23.21- Speaking of unacceptable words, check out the reaction one professional organization had to something an attorney for a January 6 defendant said. IDD reacts to comments of attorney Albert Watkins.   

I think everyone reading this blog knows using the R-word is offensive. Over 100 organizations have made a coordinated effort to equate the R-word and its variants with the N-word. Calling someone a retard, or something retarded, has led to the shaming of celebrities who slip up and use either word. Congress passed a bill in 2009 called Rosa’s law, requiring the replacement of all R-words with the term “Intellectual Disability” in all federal statutes. Still, R-words remain buried somewhere deep in our collective arsenal of derogatory names.

     But the R-word isn’t the only derogatory word that I think should be avoided. There are three older words that also deserve to be banned. They are moron, idiot, and imbecile. It’s probably true to say that most people today don’t know that at one time, these three words were just as sensitive as the word retarded. They were hurtful labels with serious connotations.

     When I began working with intellectually and physically impaired people in 1974, we used several variations of the word retarded to categorize those on the lower end of an intelligence scale. If we step back to the year 1920, before the word retarded appeared, moron, idiot, and imbecile described the same degrees of intellectual impairment as the R-words. We can still find these three words used every day. Here is a chart comparing the 1974 words with those used in 1920:

In 1974* You Were CalledIf You Scored This On An IQ TestIn 1920 ** You Were Called
Normal100Normal
Mildly Retarded51-70Moron
Moderately Retarded35-50Idiot
Severely Retarded25-34Idiot***
Profoundly Retarded0-24Imbecile

*One can still find these words in medical diagnostic classification systems.[i] [ii]

** The word Feebleminded was widely used in this same era, although it is missing from this list. This diagnosis was not tied to an IQ score but rather referred generally to people who were considered incapable of making good decisions. Those who were mentally ill, alcoholic, or poor were often called feebleminded.

*** The term idiot described people whose IQ was between 25-50.  

     In 2021, I regularly hear people call others a moron, an idiot, or an imbecile with absolutely no embarrassment or hint of inappropriateness. Most don’t realize what these three words even mean. I recently found Gary Larson’s 1985 book Valley Of The Far Side on my bookshelf. If you’re not familiar with his work, he specialized in finding humor by twisting sayings and situations into weird cartoon scenarios. In the small, one hundred- and four-page book, one character describes another using the word idiot in three cartoons, imbecile in two. If we are honest, we all use one of the three older words now and then. They, too, are buried in our collective arsenal of hurtful words.

     All the words I describe are derogatory. And by no means are they the only ones; cretin and mongoloid are two more. I’m not saying we need to shun people or ban books that use these words. I am suggesting that if people understood what they were saying, maybe they wouldn’t be so quick to label others.

[i] Diagnostic and Statistical Manual of Mental Disorders 4th Edition published by the American Psychiatric Association

[ii] Also see the Handbook of Genetic Counseling/Developmental Delay and Mental Retardation

Belly Of The Beast

February 2, 2021
by Kirby
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Anna Olson

     There is a saying about history repeating itself. It does, and I will show you how it is happening right now. In America, during the golden age of eugenics (1900-1950), proponents of this mindset advocated for the involuntary sterilization of anyone thought not fit to produce the right kind of offspring. Mainly, this meant the mandatory sterilization of women.

     In the United States, over 30 states passed laws permitting involuntary surgical sterilization. The result was over 63,000 people losing their reproductive rights. The National Socialist Party (NAZI) of Germany studied American sterilization legislation and then implemented its more aggressive plan. Between 1934 and 1945, the Nazis sterilized approximately 350,000 (1) people against their will.

     But that’s all in the past, right? Actually, no. I recommend you Google a November 2020 Independent Lens documentary, Belly of The Beast. (2) This movie digs deep into the California prison system’s illegal and involuntary sterilization of female prisoners, a practice that ended within the last decade. In the film, California prison doctors lied when they said they sterilized approximately 140 women, stating that they wanted the operation. (3) The physicians doing the surgery went on to say they believed that both the women and society stood to benefit from their actions. And that is the kernel of the ugly truth that ties the past to the present.

     The government’s logic was and is that they are unburdening women from the responsibility of caring for unwanted children. Officials also argued that these low income, mostly minority, women would live a higher quality of life with fewer children. Plus, society benefited from not having to pay welfare for their children. They said those things in the 1930s, and that’s what they said in 2013.

     Still needing verification is a whistleblowers’ 2020 claim (4) that ICE has involuntarily sterilized immigrant women they are holding in detention centers. If true, this would fit the pattern of sterilizing incarcerated, mostly minority women for the sole crime of being poor.

     American Genes tells the story of how I envisioned eugenics playing out in a small town in the heartland of America. In my book, the threat of involuntary sterilization is one of the tools used to stop “undesirable” people from having children. The fictional characters in American Genes, the people of Germany, and the poor women in California prisons all have one thing in common, the reality that a government violated their reproductive rights.

(1) Eugenics: Compulsory Sterilization in 50 American States, Lutz Kaelber, Associate Professor of Sociology, University of Vermont.

(2) Belly of the Beast is a production of Independent Lens and PBS, November 2020.

(3) Also see the Center for Investigative Reporting’s: Female inmates sterilized in California prisons without approval Corey G. Johnson July 7, 2013

(4) See The Outcry over ICE and Hysterectomies Explained VOX September 18, 2020

It’s All In The Genes

October 9, 2020
by Kirby
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Anna Olson
American Genes

     GOOD NEWS! American Genes, my forthcoming novel, will be released by my publisher, Atmosphere Press, on or about November 15, 2020. The book tells the story of a Minnesota farm girl who had the misfortune of having two seizures. While technically not enough to diagnose her as a person with epilepsy, she was still branded as such by an overly zealous social worker. Having epilepsy in the 1920s and 1930s meant one had inferior genes. In those days, this diagnosis had severe consequences such as involuntary sterilization, or, more frequently, forced institutionalization.

     The idea of inferior genes springs from a belief in what is known as eugenics. People who subscribe to this way of thinking believe some people are superior to others because of their genes. People with good genes are smarter, quicker, healthier, and contribute to their community. On the other hand, eugenics subscribers believed that people with bad genes were a burden to society. Eugenics, as a widely held belief system, began to die out after the horrors of WWII, when everyone saw what Hitler had done with the concept of bad genes.

     BAD NEWS! Eugenics and it’s gene theories didn’t entirely go away. For example, President Donald Trump resurrected the importance of genes when he addressed a crowd in Bemidji, Minnesota, on September 18, 2020, and on more than a dozen other occasions. He resurrected the misbegotten idea that white people have better genes than people of color, or who came from undesirable countries. President Trump implied that native Minnesotans had better genes than those from Somalia. Making those comments to a group of mostly white people whose origin traces back to northern Europe is no accident. Trump was telling the crowd what they wanted to hear, that they were the most desirable Americans. They were the hard-working people who built our country into the powerhouse it is. They had the best genes.

     As often happens, the real world meets the fictional world, and my book American Genes is a case in point. Written long before Mr. Trump made his “gene” comments in Bemidji, it illustrates intolerance for those with bad genes, just like in the old eugenic days. Hearing his words sent a chill down my spine. The history I warn about in my book is already starting to repeat itself. I firmly believe we don’t want to go back to a world where people are measured solely by their genes.

     Watch for the release of my new book American Genes, November 15, 2020! Or it is currently available for presale on Amazon.

SPEAK UP AGAINST TYRANNY

July 10, 2020
by Kirby
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I’m afraid of tyranny. I fear that America is slipping and sliding into an autocratic takeover of our government. It’s happening right here, right now, before our very eyes. Many of our wisest leaders say that we’ve reached the “red zone” danger level.

When I think of tyranny, I recall post-WWII and the observations made by a German pastor, Martin Niemoller, who first supported, then opposed the Nazis. You’ve probably heard or read this before, but it’s worth reading again.

Reverend Niemoller’ reflections on what he failed to do, reads like a poem:

First they came for the socialists, and I did not speak out—

     Because I was not a socialist.

Then they came for the trade unionists, and I did not speak out—

     Because I was not a trade unionist.

Then they came for the Jews, and I did not speak out—

     Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.*

So what can we do? Speak out! Get involved in your local government, vote, write letters, make phone calls, protest, support those who are actively working to resist the suppression of the truth. Help others through acts of caring, welcome strangers, give to food banks. Be kind. Don’t let any form of intolerance take root in your community, because once it starts, it grows like cancer.

Buy Timothy Snyder’s short and to the point book ON TYRANNY.

* This is one of several versions of Pastor Niemoller’s comments, which he never committed to writing.

INCLUSION

February 12, 2018
by Kirby
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      Late last fall I went for a walk on a gloomy, misty, day in Oak Park, Illinois. I noticed the sign above on the side of an old church. The big white banner stood out against the faded limestone.

I’ve written about INCLUSION before, but on that day, I saw it in a different light. Up to that point, I thought of INCLUSION as all things to do with access for people with physical or intellectual impairments. But on that day, I understood it in a wider context. Jesus was radically INCLUSIVE. He was the first to open the door for all to enter heaven. He took the worst sinners, the most physically handicapped, the mentally ill, and invited them in.

One need not be a person of faith to absorb the message on the banner or to understand the lesson Jesus taught. In today’s parlance, we need to be ALL INCLUSIVE, like Jesus. Regardless of gender, sexual orientation, physical abilities or disabilities, or socio-economic status, we should welcome everyone into our world.

There was a fad sometime back where people wore wristbands that had the initials WWJD which stood for What Would Jesus Do? He would be INCLUSIVE. Simple as that. And like the white banner on a gloomy fall day, we should stand out as being proactive. Each day, we can all actively INCLUDE everyone, regardless of how different they might be. It’s as simple as that.

 

SAD

October 30, 2017
by Kirby
comment 1
Isolated In America

At first, it made me angry, then SAD to watch a group of approximately twenty five developmentally disabled people slowly make their way across the crosswalk and into the grocery store. Don’t get me wrong – – please. I wasn’t angry at the people.

Some things in life are relative. What was considered progress forty years ago might be inappropriate today. When evaluating something we are compelled to ask, “compared to what?” Take group shopping as an example. Is it appropriate to take at least twenty-five developmentally disabled adults into the grocery store in one large group?

In 1975, I was Director of Professional Services in a state hospital in Wilmar Minnesota. Back then, I was excited and pleased when group activities like this happened. The mere idea that these individuals were outside one of the big, old, horrible state institutions was considered monumental progress. Since then I’ve seen improvements in the way developmentally disabled people receive the services they need. That’s why I was surprised when I saw the large group in the crosswalk.

In 2017 it is generally accepted that disabled people should not or do not wish to be put on display. If one of them needs to go to the grocery, he or she has the right to be helped by one person. It’s less likely that the public would notice that one of them needed some help. That is the way life should be, assistance with dignity.

To make things worse, in the parking lot, were four green and blue vehicles with the name of the organization that brought these individuals splashed all over the sides. The largest, a mini-bus contained some trite, demeaning phrase about loving the developmentally disabled. Four vehicles screaming out “Hello – – I’m helpless.”

Inside I needed only two things, a prescription and a gift card. I was, however, intent on seeing what was happening with all the developmentally and/or intellectually impaired people. To my dismay, I found fifteen people crowded closely around one, maybe two staff. They reminded me of a swarm of bees as they completely blocked the aisle. The queen bee was giving orders to individual members of the swarm. She asked one woman to pick up a loaf of bread. A man was told to stay with the group. Most of the group wasn’t paying any attention to what was happening.

On down the narrow aisle, the small mass of humanity crept. Other shoppers had to notice this group and like me, they might have felt a twinge of pity on these poor people’s status in life. Pity, a useless emotion if there ever was one, made even worse by the fact it’s not what an impaired person wants or needs. In my opinion, these people have a right to a higher quality of service.

A few aisles over, another group appeared, hovering and swarming near another staff person. This group was smaller, ten people. At this point, I stopped counting or looking for more swarms. I felt disgusted with the agency responsible for this outing. They might as well have dressed all these individuals in red, or in clown outfits; their presence in the store was that obvious.

I can’t blame the staff. They’re simply doing what they are trained to do – – or allowed to do. Every organization has a culture, an atmosphere which sets the tone of how it behaves. It was abundantly clear the culture of this organization didn’t value the privacy and individualized help each of their clients deserve. My only hope is that other services this organization provides are delivered more appropriately.

I plan to share this little essay with the organization whose staff carried out this large group grocery shopping trip. Perhaps there is a logical reason for doing what they did. For example, maybe they were picking up a few items for a spontaneous picnic. Even then, one or two people could have been selected to do the shopping with the help of one staff member. Other staff could have remained in the vehicles for the safety of the others.

I’m still bothered by this incident, SAD to have witnessed it. SAD that the individuals involved had to live it. I hope my words make the agency angry. Angry enough so that they are prompted to be more respectful of the dignity of their clients.

Kirby V. Nielsen

kirby.nielsen@gmail.com

JOY

August 18, 2017
by Kirby
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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.

HATE

May 4, 2017
by Kirby
comment 1
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

March 26, 2017
by Kirby
comment 1
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.