Three Women

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I met the real life Anna Olson only once although I was briefed extensively on her background and test results by my staff.  There are some basic facts that my staff and I knew about the real Anna.  She spent over 40 years in various institutions in Minnesota, she scored exactly 100 (normal) on two separate intelligence tests, and she was able to independently care for all her day to day self care needs. Apparently, somewhere in her past, she had experienced some seizures, which were probably the main reason for her admission to an institution although there were no seizures noted in her file.  I did not make note of any specific dates at that time, but I assume from what we did know, that Anna probably was committed (admitted) somewhere around the early 1930’s as a teenager and at the time of her discharge in the mid 1970’s, she was in her mid to late fifties.

For all these years since I met her, I have assumed that Anna’s story was unique and presented unique issues.  But as I research her story, I have discovered there were likely tens of thousands of people all across the US who were put into institutions at that time, for many reasons we would now consider entirely inappropriate.  Many of these people remained in institutions for their entire lives despite the fact that they could have easily been discharged.

The main question I carry away from my encounter with Anna is how could she have been institutionalized for all that time?  Why didn’t someone ever bother to evaluate her before we did, or talk to her, or realize there was no reason for her to remain in an institution?  After spending her entire adult life experiencing the degradation and at times the horrors of institutional life, I wonder what kind of freedom she experienced once she was discharged? My goal then, is to write a fictional account of what her life might have like before, during, and after her institutionalization.


The second story I have carried with me all this time, is that of a very severely handicapped girl who lived in Iowa.  She was so handicapped by Cerebral Palsy that when I first met her, she could not control any of her muscles.  This young lady grew up in a loving family and was cared for mainly by her mother until her mother began to develop health problems and could no longer lift her.  She was then placed in a nursing home, her parents being unaware of any other options other than the State of Iowa institution for developmentally disabled people at Woodward, Iowa.  A placement the parents wanted to avoid at all costs.

We admitted her to the organization I directed at the time, Winnebago Handicapped Services, on a last resort, desperate appeal from her parents.  When I met her, this young lady was most likely around 16 and was just barely clinging to life.  She appeared to have “failing to thrive” syndrome, a rare condition seen mostly in abandoned or neglected babies, her vital signs were gradually weakening for no apparent reason.  After months and months of caring, touching, holding, and physical therapy, she came back to life, she put on much needed weight, and the color returned to her skin.

One day, in what seemed like a miraculous discovery, a staff member noticed what she thought was a very slight head nod in answer to a question she had been asked.  She had finally broken through to the outside world!  What we soon found was that this young lady knew how to spell, count, and the answer countless questions even though she had never been to school.  In many respects, she was a “Helen Keller”.  We considered her progress as an affirmation of our treatment philosophy that even the most handicapped individual can benefit from therapy, nurturing and good care.

I have often wondered what it would be like to be her, to understand everything, but have no way to interact with the outside world, no way to smile, blink your eyes, sign, or tap your finger to answer questions or make comments.  What would it be like to live in a world where everyone assumed that your mind didn’t work just because your body didn’t work?  And finally, what must it feel like to one day find you can communicate?  Hopefully, after finishing the story of Anna Olson, I will write her story and try to answer some of these questions.


The third woman is actually another young girl.  She was well-known in West Virginia by all types of social services agencies for two reasons, she was a notoriously difficult to serve troubled teenager, and she served as the lead plaintiff in a “failure to provide appropriate services” Federal class action lawsuit.

If you met her, she would most likely impress you as a rough around the edges teenager, and she had a big smile, which hid a world of hurt.  She swore like a sailor and had either run away from or wrecked havoc in every foster home, school, or state institution she had ever been in, and it was a very long list of places.  At every place and at every turn, people said they could not help her.  No one seemed to be able to get her settled down and under control, she just didn’t fit in anywhere.

A county judge somewhere in West Virginia sent her to my facility simply because she had not been admitted there before.  The State of West Virginia told the judge they were out of all other options.  It may help you to know that my facility, the Greenbrier Center, served severely and profoundly retarded (the language of the day) individuals and she was anything but that, so there was no reason she should have been sent to me.  When a sheriffs car pulled into the driveway with her in the back seat, it was followed by a car carrying staff members from a West Virginia advocacy group.  In my right hand I had a court order to admit this young lady, in my left hand was a letter saying that if I admitted her, there would be a class action law suit against the State of West Virginia and possibly, myself.  The judge’s order won out, and besides, the lawsuit was going to happen anyway.

I have always wondered what terrible things had transpired in what we knew to be her X-rated past, and how they had shaped her into the very complex person she had become.  But I have thought more about the fact that this is more the story of a complete breakdown in the State of West Virginia’s social services system.  She was a victim, first of psychological and physical abuse in her home, then from neglect and ineptitude on the part of the people appointed to help her.  I would like to someday explore the back stories of this young lady’s life and the system which failed her, finally leading to the lawsuit which changed the entire system of institutions and many social services in West Virginia.

My next post will be an excerpt from the first chapter of the story of Anna Olson.  


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After finishing my Masters degree in child clinical psychology (Drake University in Des Moines, 1974) I went to work in the field of what today is called developmental disabilities.  In a relatively short period of time I worked as the Director of Professional Services at the Glacial Ridge Training Center in Willmar, Mn., the Director of Winnebago Handicapped Services in Forrest City Iowa, and the Director of the Greenbrier Center in Lewisburg, W.Va.  All were residential services facilities providing 24 hour a day care for people who were moderately to severely impaired.

I took with me from each of these organizations a great deal of respect and admiration for one woman. Their real life stories of abuse, suppression, and survival have remained with me.  I often thought about their lives and circumstances and I believed that someday, I would write a book about them.  At first I thought it would be one book with three stories, I have notes from a long time ago to this effect.  Now however, it is clear to me that each woman’s story deserves its own treatment, its own book.  It is a fact I am not a good enough writer to be able to tell the story of whole sections of a person’s life without using a lot of words.


The decades rolled by since I knew these ladies but I kept thinking about them.  With my insurance career at an end and my health stabilized, I believed the time had come to finally get started writing.  With the encouragement of my friend Ric and Cheryl’s support, I started to write a fictionalized story of Anna Olson, the first of the three ladies I met.  All the scenarios about her life that I had considered for all those years served as a starting point.  But the story itself is simply flowing out of my head as I type, and it has been truly amazing for me to experience characters and events simply appearing on the screen.  The story soon blossomed in many directions, hopefully, making it richer and more complete.


After writing for just a few weeks, I realized that it would likely take me years to write the story of Anna Olson.  First of all, I am limited in my writing time by two things, my ability to concentrate for very long, and my desire to enjoy life with Cheryl and our family.  Additionally, I knew I had to learn more about the subject matter and this involved research.  Online research and good old-fashioned book reading about the diverse subject matters now takes more of my time than the actual writing.  I don’t want to write a formal history book about Anna and her life, but I do want the story to come with an authentic background.

I have discovered that to tell a story that spreads out over nearly a century, and in several places, things get complicated. Maintaining consistency and readability in regard to the various characters, dates, and environments is hard.  All of this has resulted in pages an pages of notes, a story outline, a timeline, and a bibliography, all of which takes time to construct and maintain.  Having no training or even extensive practice in writing is also a problem.  Sentence structure, tenses, and how to describe things clearly are each challenging for me. Sentences and paragraphs have to be done and re-done, sometimes three or four times, or more if needed when the actual editing takes place.  I understand now how it can take so long for a book to be finished.  It is less creative thinking and more hard work than I imagined.


I am still not quite complete with the first draft of what I believe will be the first third of Anna’s story.  I thought that perhaps, for those of you who know I am doing this and have been asking to see a sample, or read the first draft, and for those of you with whom I would like to share my work, I would post samples of what the story is like on my blog from time to time.  These will just be slices of life so to speak, and I will try to supply some context to go with each post.  These excerpts may not make it into the finished product, or they may be significantly re-written, so take what I post with a grain of salt.

I would appreciate very much your reaction to these snippets, especially any critical comments, observations, or questions you may have.  I will send you an e-mail from time to time with a link to each new posting.  If this is of no interest to you, that is fine, I realize this is not a story that will tweak the interest of very many people.  Let me know and I will stop sending you the links.

Finally, I have no great illusions about any of this writing business.  I am doing it because I like to do it, because I think there is a story to tell, and because it is my “work”, it makes me structure my time more carefully and hopefully, helps keep me mentally alert.  In other words, I am not planning on being the next great American novelist nor on any of this getting published.  If it does, it will be icing on the cake.  I will be happy just ending up with a good story about a woman (or women if time were to allow) who would otherwise have been long forgotten.

NEXT POST-Before we begin, a little bit about the real lives of the three women.

I Want Watson

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The Grab Bag

I want Watson. You may know Watson, it is the super fast speed reading, odds setting, wiz of a computer that can understand complex questions and provide answers graded according to their probability of being correct, in mere seconds. Just ask the world champions at Jeopardy, they know all about Watson.

As a health care consumer, I don’t care about answers to Jeopardy question, I want the information that IBM’s Watson can provide about rare diseases. Certainly, I don’t expect to access it personally, nor do I care if it provides me information in mere seconds, a few days or even weeks would be fine with me. But my imagination spins at the idea that Watson could sift through every published piece of medical information to answer difficult medical questions.

Currently, Wellpoint, one of the United Sates’ largest health insuring companies is planning to add Watson to its already formidable compilation of medical data, which may be a tremendous step forward for their clients. But I want Watson available to my doctors, without an insurance company acting as a gatekeeper. In fact, I want it available to all physicians or medical researchers around the globe, who wish to use it in order to help them better understand their most complex patients or for clues to understanding complex research questions.

Here is why I want Watson. I have a complex neurological disorder that qualifies me to wear the label of a person with an orphan disease. In the 8 years I have been sick, no physician has ever treated anyone like me nor seen any reference to someone with my combination of symptoms in the medical literature. I am truly orphan even among those with orphan diseases.

Somewhere in this world, I believe there exists someone like me, someone who had a sudden onset movement disorder with no known cause other than it is related to the immune system. I believe Watson can find that person(s) and my physicians can learn from him or her. I also imagine a “Wiki Watson” where medical and research information can be updated as soon as it is available, even before it is published.

In the Watson world I desire, I see rapidly shrinking medical unknowns, where people with heretofore rare, or “orphan” diseases will find themselves less rare. In my Watson world, more information can be applied to better diagnosis or treatment, not only for an individual, but for the next person to be told that they are an “orphan” and because of this label, nothing can be done.

John Adams Wishes You a Happy Birthday

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The Grab Bag

It was John Adams who was most vehemently encouraged America to continue to celebrate its birth. Here is what he wrote to his wife Abigail;

 “The second day of July 1776 will be the most memorable epocha in the history of America. I am apt to believe that it will be celebrated by succeeding generations as the great anniversary festival.  It ought to be commemorated as the Day of Deliverance by solemn acts of devotion to God Almighty.  It ought to be solemnized with pomp and parade, with shows, games, sports, guns,bells, bonfires, and illuminations from one end of this continent to the other from this time forward forever more.”

The date above is not a typo, July 2nd is the day Mr. Adams had in mind as the birth of our nation:

  • The actual vote for  independence came on July 2nd.
  • The announcement of the Declaration of Independence was July 8th  which was the great day of celebration in 1776. By this time, Thomas Jefferson’s draft had undergone more than 80 changes.
  • The actual signing of the Declaration of  Independence came on Friday, August 2nd 1776.

Happy Birthday indeed, and as Mr. Adams would often say, “rejoice ever more”.

Kirby V. Nielsen

Source; David McCullough John Adams

Say “No Way” to IO-way

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The Grab Bag

I am from Iowa so I can say this.  Thank God their caucus’ are over tonight.  The average Iowan has been subjected to more pounds of hot air per person than anywhere else in the United States.  It is a wonder there is any air left in Iowa.  And the rest of us have been forced into being witnesses to the prolific misuse of hot hot air.

Regular folks in Iowa can’t even eat their lunch in peace.  A story in the Wall Street Journal told about a life long Republican, a senior citizen who was eating his lunch in his favorite restaurant and in walks Hillary Clinton and a bevy of media and secret service folks and who knows who else.  He has never liked either of  the Clintons and has to slink down low so she doesn’t see him and come over to him.  Now that is a situation no American should have to be subjected to.  When faced with being cornered by a politician, every American should be guaranteed the right to be able to duck down a side street of their choice.  Perhaps campaigns should be required to send out a runner ahead of the candidate warning everyone that they are approaching.   That way people who don’t want to be bothered could get out of the way.

Imagine being bombarded by TV ads for months and months on end, getting piles of glossy junk mail you don’t want, and listening to those annoying canned phone messages all hours of the day.  I wouldn’t blame Iowans for demanding a special privacy law where one could “opt out” of the political ad blizzard.  Of course, all this hoopla brings in millions of dollars to the state and of course one has to take that into consideration before being too critical of the whole process.

In fact, perhaps Iowans could create a whole new industry called POLITICALOPINIONATING.  Since politicians are apparently willing to spend millions of dollars just to curry the favor of otherwise sensible people, why not make Politicalopinionating a full time industry?  Instead of bothering with having a Congress, whenever the country is facing a major issue, just have the pros and cons of the issue presented to Iowans for them to “Caucus” on it.  Paid volunteers could be sent swarming over every corner of the state to badger the citizens into sharing their opinions.  Individual Iowans who “cacus” could be paid a fee for their participation.  It would probably be more entertaining and cheaper than having a Congress where people are paid for doing nothing.

Iowans have to put up with alot these days.  Not only do innocent people have to dodge political zealots, but suppose they want to get stay in Des Moines over the Christmas Holidays.   Why they couldn’t do it because every room has been taken up with TV talking heads who can spend hours explaining that a race is too close to call.   I just hope they charge plenty to all those New Yawk and Warshington experts to stay at the Best Western out in Clive.

To top things off, Iowans have had to suffer the indignaty of having their own politicians put a tax on pumpkins if they are used for decorations, but not if they are used for making pies.  Who is gonna follow Eldon Farmsmith home to see if his grandkids carve them up or if his wife bakes pies with them?  I tell you it is going to teach a whole generation of God fearing people to learn to lie.  Like Meridith Wilson said in the famous song Music Man song, trouble starts with the letter P except it isn’t P for pool, it is P for Pumpkins.  I think if any of these presidential candidates wanted to do some good, they would take a strong position on the pumpkin tax.  Better yet, maybe the whole state could have a pumpkin party just like the Boston Tea party only they could throw all the pumpkins they can gather together into Spirit Lake or the Mississippi River.

For the sake of the country lets all just say “No Way” to the IOwa-way.  No more cornering innocent senior citizens who are just trying to eat their lunch in peace.  No more annoying junk mail.  Lets support Iowa moving their cacus day back to November 2, long after both parties have held their nominating convention. I like the guy who was interviewed on TV tonight when he said ” I will vote for any politician who leaves me alone”.  Finally, a voice of reason in the media wilderness we know and love as Iowa.

Kirby V. Nielsen January 3, 2007