Inside the old house, they found Bjorner Andersen.  For some reason they had envisioned he would be a younger man; this one was much older and weaker, he looked thin, gaunt, and barely alive.  He had stepped on a rock wrong with his right foot, causing his leg to give way and him to fall on another rock, cracking his fistula up close to his hip.  They would soon learn that this old man may have been frail and weak, but he was far from death.  He had survived laying out in the snow for a day and a half until finally, a passing neighbor happened to look his way and saw him waving his cap in the air.  Mr. Andersen’s broken leg was such that all the doctor could do was to immobilize it as much as possible; the rest of the healing would be up to him keeping as much weight as possible off the leg.  The doctor prescribed morphine to ease his pain, and told Mr. Andersen nothing else could be done.  He feared the worse for the old man since these types of breaks almost never healed correctly in elderly people and usually signaled the beginning of the end of their life.  At age 89, it looked like the end may be near for old Bjorner Andersen.

They stood over a bed that had been moved from a second floor bedroom into the living room, staring in silence at old Mr. Andersen, who was in a deep, morphine induced slumber.  As they watched him, both wondered how he had been able to keep up even minimal farm chores before he broke his leg and how he would ever get back to doing them.  Of course, that was not the problem Bjorner Andersen faced today.  Lar’s father cleared his throat several times and waited patiently for the old man to wake up.  As soon as he opened his eyes, his father spoke with all the authority he could muster:

“Mr. Andersen, I am a carpenter and farmer from Riset, and here is my son Lars.  We have heard of your misfortune, and your need for some help with your farm.  We own a small family farm just east of Riset.  My son Lars here is an excellent farmer, the best farmer in our family, much better than myself or his grandfather at growing crops and caring for our animals.  He wants to earn money to go to America and it would be good experience for him to work on your farm until, ah, you know, until you get better.  He is hard working and honest, if you would pay him a fair wage and give him room and board, he will take care of your fields and your animals.  I guarantee you he will leave your farm in better condition than he found it”

The old man, now fully awake, took a long look first at Lars and then his father; he was squinting through eyes set deep in their sockets:

“I have never seen you two in my life and I sure as hell didn’t ask for you to show up uninvited into my house.  I didn’t hear, where did you come from?”

“I said, we come from Riset and our family has been there for generations and no one has ever had a complaint with us.  Our pastor mentioned your problem to us, and so we have come to help you.  We are good, honest people” Lar’s father replied, all the while gradually speaking louder.

“Why should I believe you?  For all I know, you are God damn crooks from Sweden.  And you supposedly good, honest people cause 90% of the problems in the world.  You seem to think you know what’s best for everyone else because of God, or the church or the state is on your side” Andersen shot back.

“Well, what else can I tell you that will make you understand that we are here to help you?  Perhaps I could suggest this.  Hire my son for a week and have someone from your family or a neighbor come to Riset and talk to anyone there about my son or my family, ask questions and have them see for themselves that what I am telling you is true.  If you find any problems with my family or my son, he will not require any pay for the week he has taken care of your farm.  You don’t really have any choice do you?  From what we understand….., well…., no one here in Kleppe is interested in helping you out.  Do I understand that correctly Mr. Andersen?”

“Then he has to start immediately” the old man said, he was too weak to object any further.  “I’m in no shape right now to take care of my farm.  But as soon as I am healed, out he goes.”  Andersen replied in a thin, snarling voice.

What ensued was a long discussion between Lar’s father and old Mr. Andersen over Lar’s wages.  Sensing the old man’s isolation and lack of options for staying on his farm, his father held out for a good and decent wage, higher than the near poverty wages normally paid for a farm hand.  He also knew that if Lars would stay on into the spring and summer of the following year, he would produce more than enough in crops and farm produce to justify the higher wage.  Besides, Lars would have more responsibilities than just being a farm hand, a common worker.  There would be farm management decisions to make, and some household chores.  Finally, after what seemed to be an eternity to Lars, they came to terms.  Lars knew the haggling was over when his father said.

“He will start now; I will bring him his clothes in a day or two”.

Lars realized then that within a matter of two days, his life had just changed forever, that a whole new life lay ahead of him.  As he walked his father out to their wagon, his father looked at him and winked:

“I have a good feeling about this.  This will be a good chance for you to earn some money for America.  You know you can’t save enough off what little we have left over on our farm, and despite this old guy acting like a troll, I think he is really a good person.  Your good disposition will make him more agreeable and you will get along with him fine.  We will do what we need to do to get by there on our farm, and maybe you can return to help us from time to time.  But I know you are old enough and smart enough now to be independent, to start living on your own, to making your own decisions.”

With that, he put his hand on Lar’s shoulder and said goodbye.  He picked up the reins and slapped them gently over the horses back and began to move out the driveway.  As he watched his father leave, Lars could hardly contain his emotions, there was the excitement of getting his first job away from home, plus this would be the first time he had ever lived away from home for any extended time.  He had no way to know what to expect, but whatever it was, he was sure he could handle it, he was strong, smart, and 23 years old after all.  But if anything, he thought this would be good practice for when he moved to America where he would face even greater challenges, and where there would be an untold number of problems to overcome.  Lars stood in the driveway a moment longer before heading back into the old man’s house.  He acknowledged that his father, brother, and the women back home would have to do all the work he had done.  His family was sacrificing the rather easy way of life Lars had given them in order to provide this opportunity for him.  The moment was bittersweet, a moment when he was torn between a young man’s longing for more independence and the comfort of his home and family.

It will all work out he thought before stepping back into the old man’s stale smelling house.

Anna Olson’s father Lars was born on 2 October, 1886 with the chill of autumn painting its first golden strokes on the small stands of Aspens.  His first memories were those where he was sitting on his grandfather’s knees at the large dining room table.  The table occupied nearly the entire room and served not only as the family’s eating place, but it’s social and business center as well.  Guests were entertained around this table, which made them feel accepted, almost as if they were part of the family.  There was something about that table, and sitting in an oval, which gave everyone a sense of inclusion.  Even the children, as noisy and demanding as they can be, were always welcome, and gathering at the table gave them a sense of growing up as a part of a small tribe.  Children could always find a knee, and any knee was a good knee.  Lars would sit there, on his Grandfather’s knee, his favorite, leaning forward to play with a toy soldier, some blocks, or a marble or two.  He was perfectly content to ride the swaying motion of that knee, balancing himself with an elbow.  As he got older, he and his older brother, on a knee across the table, would take turns making funny faces for the entertainment of the other.  When they got too far out of hand, an adult would simply put their hand over a face and that would quietly end the distraction they created.  Lars grew up in this home, a contented and happy person, always smiling and courteous to others.  Lars loved everyone, and everyone loved Lars.

His grandfather’s face was round and jolly, with a white, well-trimmed beard.  It was the kind of face that instantly made people feel at ease.  Even though he didn’t work very much anymore, his hands were rough, covered with hard skin and scars accumulated from all the years of working with wood and doing farm chores.  As a little boy, Lars would trace those scars with his little fingers, wondering what they were and how they got there.  There was something about his grandfather that he loved from the time he was little, and as he grew up, there was a special bond between them.  His grandfather always had time to tell him a story, give him a lesson in how to use a knife, or play hide and seek with him.  He was the ideal grandfather, always available to love and teach and make each child feel special.

Grandfather was the head of a growing family living in a small house, and Grandmother was the loving matriarch.  Grandmother and Grandfather watched over Lars, his parents, an uncle, older brother, and younger sister, plus his mother was pregnant again, meaning one more person would soon join the group around the table.  His uncle Albert remained at home even though he was well past the age where he would normally get married and move out on his own.  With the occasional addition of a new daughter or son in law, and the subtraction of the young adults who married or went out on their own, the small houses found in that part of Norway were often crowded.  In the late 19^th century, it was not uncommon for a family to have several generations living under one roof because most families in Norway were poor, and there were few jobs.  Families lived together to save money and take care of each other.

Lar’s family lived on a small farm, created on or about 1821 when the old communal method of strip farming was gradually replaced by independently owned farms.  It was a radical change to the way things were done, and it resulted in a large increase in food production.  Farmers, working independently for a profit were much more productive, demonstrating that the old communal system was a failure.  When the dividing was all done, the Olsons ended up owning a small farm of about 10 hectares.  It was not large enough to support a large family, so the primary occupation for the men was carpentry and they were known as some of the best wood craftsmen in the region.

In fact, the Olson ancestors had been carpenters long before they were farmers, taking up the skilled trade when large oak forests covered much of that part of Norway.  Carpentry was in the family blood, as certain as their blue eyes and blond hair.  It would probably be true to say that an Olson had probably had a hand in building most of the structures in the area, and going back a thousand years, they may have made the Viking ships that terrorized Northern Europe and the world beyond.  From the time they were little, all the Olson boys would learn to build bird houses, repair rabbit hutches, or shape a toy out of a block of wood, it was their initiation into the woodcrafts.

The Olson men, over time, converted what used to be a one room hunting cottage into the family home.  Lars’ great grandfather expanded the cottage into three rooms, and his grandfather extensively remodeled it many years ago.  Now, there were three small bedrooms, a dining room, kitchen with a large pantry, and an entryway which served many purposes.  In addition to the house, there was a barn, a chicken house, and a hay drying shed.  Each of the buildings was constructed so well that they had been standing straight for many years and would be standing strong for many years to come.  Any board, or shingle which came lose due to wind or age was soon repaired or replaced.  The Olson men saw to it that the farm was always neat and well maintained; theirs was the farm others envied.

Lars grew up a happy child in this happy home.  With the normal exceptions, when tempers would flare, or someone would make a big mistake, a general cheerfulness prevailed in the home.  Lar’s parents were quiet, deferring to Grandfather and Grandmother Olson in both decision making and conversations.  Grandfather was the apparent head of the family.  He would lead the family in daily devotions and prayers, discussions of world events, or progress being made in the growing season, harvest, or home building.  But it was his grandmother who made the final decision on anything of importance; no major purchase, or sale, or change took place without her consent.  If one looked closely at the family dynamics, they would notice that Grandmother and Grandfather had a way of communicating without speaking, as do all people who have been married for decades.  Grandmother conveyed her opinions from across the table in the way she sat, or looked at her husband, or folded her arms.  As in any household, things work best if everyone knows who is in charge, and the Olson family was no different.  If anyone really wanted a certain thing to be done, or allowed, or changed, they first lobbied for its approval with Grandmother Olson, then brought it up with Grandfather.

Grandmother Olson was a heavy set lady, who seemed to wear the same blue dress and checkered apron all day every day.  She loved to grab a child, enclose them in her large arms and give them a big kiss before handing out a treat; the little ones often thought they would suffocate in her embrace, but they always emerged no worse for the affection.  Her dominion was the kitchen, where she would make the most wonderful traditional Norwegian food using ancient recipes.  There was nothing more enticing and powerful than the smell of her fresh breads, and she had a hard time keeping them around for the evening meal.  As jovial and good natured as Grandfather was, Grandmother’s demeanor was somewhat reserved, and at times, she appeared angry, when in fact she wasn’t.  It was just the way she was, and everyone accepted her as a normal, loving grandmother, as quick to correct the children, as she was to give out kisses.  There was one thing however, that would always upset Grandmother, and that was Grandfather’s drinking.

June 12, 1975

Sometimes, ordinary tests reveal extraordinary results, and then comes a cascade of questions.  This was the case with Jim Madsen, who for over a month now, tried to comprehend how the extraordinary results he came to know about could possibly have been undiscovered for all these years.  The results emerged out of the depths of time, but in fact, they had been hidden in plain sight all along.  He stepped out of his office building, lit up a cigarette, and while he pulled the swirling smoke down into his lungs, his mind tried unsuccessfully, to understand why the test had never been given before.

He was on his way to Arrow Woods cottage that bright, sunny morning, to take his turn leading a planning meeting for a relatively new resident, the person who had the extraordinary test results.  As he made his way across the street, then past the administration building and the dining hall, he began thinking for what seemed like the hundredth time, about how he was going to conduct the meeting, and why the test had not been administered before, long before.  He stopped to let a laundry cart pass.  While stopped, he noticed a small group of people, still in hospital gowns, smoking at a picnic bench.  It always seemed odd to him and he wondered why some programs didn’t require people to get dressed before coming outside in the morning, or all day for that matter.  He knew that if he asked the question, the staff would give him a hundred different answers, none of them acceptable.  Perhaps they would say it helped prevent the inmates from escaping the asylum.

He turned left onto the long sidewalk that led to his destination, stopping again, this time to rub out his cigarette on the sidewalk, then kicking the butt into the grass.  About this test thing, weren’t most tests given to validate what is already known or expected?  Or, were tests given to look for the extraordinary?  Perhaps they were done so one would know where to put things in some orderly classification system, in this case, people.  One might say he was toiling with how to compare the actual findings, with every notion he had about intelligence and intelligence tests.  Things just didn’t make sense in this case, and the dissonance he felt made him uneasy.  If the test had been given 10, 20, or even 30 years ago, the results could have perhaps saved a person from being denied their right to live in the least restrictive environment for all those years.  To him, it meant a person had been sentenced to a life in hell, without cause or reason.

His mind switched back to the people in hospital gowns.  There was little sense to a lot of things in an institutional environment.  Odd and sometimes bizarre conventions or norms just evolve over time in  an isolated world.  Even the name “Arrow Woods”, his destination, was a contrived, nonsensical name for what was simply building twelve on the campus of the Lake View State Hospital.  Building twelve was in the middle of a row of three large identical buildings that looked more like a convoy of battleships than cottages.  Built in the 1920′s, their brick exteriors were accented by Navy gray stucco stairs, gray stucco girdles at ground level, gray wire mesh window screens, and Navy gray stucco trim around the top, all of which fit the battleship theme-all they needed were gun turrets and the analogy would be complete.  The three buildings were the last three buildings on the edge of the Lake View campus, and one could imagine them sailing off into the corn fields beyond, out onto the vast prairie that stretched infinitely out into the distance.  They were otherwise featureless and imposing two and a half story residential buildings, old styled institutional one might say.  Looking at them, no one would logically conjure up the word “cottage”, the word depressing would be more appropriate.  But the words Arrow Woods Cottage called to mind the notion of a cozy little white house to the outside world, and it surely sounded better than Building Twelve to the staff.  It rolled easily off the tongue, but it meant nothing, in fact it misled everyone, it hid the reality of what life inside was like.

Madsen looked at his watch and slowed his pace, he wanted just a little bit more time alone to think and maybe smoke another cigarette.  Cigarettes helped ease the nervous tension he felt over this meeting.  The tension was stage fright which came before every critical meeting, speaking engagement, or job interview he ever had.  But he was especially nervous about this meeting.  He was about to confront a person and admit to them that they had been wrongly deprived of their freedom for most of their life.  No one who knew Madsen would ever guess he had anxiety about any of these things.  On the outside, he seemed calm and collected, a natural speaker and leader, full of self-confidence.  But inside, he had always doubted himself and his skills.  Perhaps that is why he worked twice as hard as everyone else at understanding what to do and when to do it.  But here, hard work failed him, and he had trouble understanding what to make of the results of this test, he was unsure how to explain things to himself, let alone to the woman who had taken the test.  He reached for the pack in his shirt pocket and lit up another cigarette.

When he reached the Arrow Woods building steps he stopped to take one last drag before putting out the half smoked cigarette, giving himself one more minute.  Then he slowly climbed the steps to the first floor.  The large foyer at the top of the stairs was just big enough to have a hollow sound and it triggered that empty, drab feeling one gets when entering a bank or any other large public building built during the 1920s.  The marble floors and stucco walls, painted an institutional green, combined to make the interior seem lifeless and cold.  Directly in front of him were an identical set of stairs leading down to the entrance on the opposite side of the building.  To his left was a long hall splitting rows of bedrooms.  To his immediate right were another set of stairs, leading down to the garden basement and further on, beyond those stairs, was a large day-room followed by still another hallway and more bedrooms.

On the opposite side of the foyer, a few people mingled outside the conference room, but everyone involved in the meeting were inside and seated, ready for the confrontation that was about to take place.  “Good” thought Madsen, he didn’t want to talk to anyone before this particular meeting, it would break his concentration, for this meeting, he just wanted to show up and walk on stage.  When he got to the seat that had been reserved for him, Jim dropped the folder he brought from his office onto the conference room table from a chest high position, it landed with a loud “splat” that caught everyone’s attention, they all turned to look at him, which is what he wanted.  Suddenly everyone got silent, the dropped folder signaled that the time had come for the meeting to start.  It also signaled that he wanted all eyes on himself, he wanted total control of the meeting.  As he sat down he smiled, a smile that disarmed them and made them more relaxed.  Those that knew him, liked him for the fact that he ran good meetings, he was always prepared, and seldom let people ramble on.  The conference room was crowded that day, it was all hands on deck for the extraordinary, or lets even say the mysterious.  Either of which can do that sort of thing, tweak everyone’s curiosity and their desire for deeper understanding.

Madsen noticed that Anna Olson and her Residential Care Advocate Rhonda Jones had followed him into the room, not more than a few seconds after he arrived, and made their way to two empty seats just to his left.  Where Anna ended up sitting, Jim could easily look directly into her eyes.  Anna’s shoulders were slightly slumped and she seemed to shuffle a bit as she followed Miss Jones to their seats, mostly she looked at the floor ahead of her, sneaking quick glances to see who was in the room.  To the casual observer, there was nothing terribly unusual about her entrance, but Jim noticed the familiar walking pattern, it came from years of going from one place to another slowly in an unnecessary straight line.  It came from wanting to blend into the environment and in the case, from assuming the persona of a mentally retarded person.

He was pleased to see that her appearance was nice, almost attractive.  She had just gotten a new dress at a local department store and her hair had been washed and styled at a real, off site beauty salon, two things she had never before experienced.  She even wore a bit of makeup, another first.  Miss Jones had told her about the meeting, that it would be about her, and that she should look nice for it.  Anna on the other hand, wondered what was going on, everything about this was completely foreign to her.  She had never been to a meeting in her life, let alone one that had to deal with herself, she was afraid something bad was about to happen.  Her fear was justified since the last time she had gotten all dressed up, was they day they took her away from her home.

Within seconds of their sitting down, Jim took a deep breath and started the meeting by looking straight at Anna:

“Anna, thank you for being here this morning, this meeting will be all about you, we will try to find a way to help you live in that we call the ‘least restrictive environment’.  What that means is we want you be in a place where you can live as independently as possible.  We feel it is important to have you involved in this process since you are the person to be effected by what we do here today.  So thank you again for joining us”.  Anna avoided looking back at him, choosing instead to stare at her folded hands, which were resting on her lap.  There was the hint of a frown on her otherwise expressionless face.

Jim continued, now focusing his attention on the rest of the people at the table:

“I want to thank everyone else for being here today,” turning to his right, he continued; “and to our guest from Redwood county, welcome to Lake View and the New Start Training Center.  I believe that this is your first visit to Lake View so I am wondering if you would take a moment to introduce yourself and maybe tell us a little bit about what your role is there in Redwood County.”

“Well, I am Beth Smith, and I am the Adult Services Coordinator for the county.  Basically, I am responsible for making sure that all of our handicapped adults get the proper care and services they need.  As you probably know, the state of Minnesota now requires that we review the status of all the residents from our county living in various types of state institutions.  Part of our mission is to return as many institutionalized people to the community as possible, which I am finding very difficult since there are so few community resources or alternatives available.  There are two of us in our department, myself and another person who does the same thing I do, except she works with children.  Since this is my first visit here, I have to say I am overwhelmed at how big this place is and how many people must be kept here.  I had no idea.”

“It is big” Madsen replied, “but with your help and some pressure on community leaders to get us options, hopefully, we can make this place smaller.  There are sure a lot of people here who don’t need to be here.  And today we have a good example of that.”

Madsen continued;

“Beth and Anna, we are going to dispense with the formality of going around the room introducing ourselves to you, not many of us can remember who people are when we do that kind of thing anyway.  Instead, I am going to ask the New Start staff who have input, to state their name and what they do here, before they speak.  That way you will have a better chance of remembering who is speaking and not have to try to remember everyone else s’ name.”

“So I will start.”

I am Jim Madsen, director of Professional Services.  I have a background in behavioral Psychology, and am responsible for making sure all the appropriate psychological, physical, speech, occupational, educational, and behavioral services are provided for each of our residents.”

He turned his full attention again to Anna and this time he caught her eyes.

“Anna, since you arrived at New Start a few months ago, you have been evaluated by all of our professional staff, which is our normal procedure when people first come into our program.  I am sure you recall that you went with Mr. Eton over there, and took a long test.  Since the results of that test were very unusual, at least for someone living here, he took you downtown to the community mental health center, where they did a similar test.  Both of these tests were designed to measure your intelligence.  In both cases they found that your intelligence level is what we call normal, your score was 100 in both tests.”

By this time, Anna was showing interest in what Madsen had to say, her eyes remaining in contact with his, she put her hands on the table and leaned slightly forward.  As soon as he finished speaking, she suddenly and caustically blurted out; “I could have told you that.”  The quickness of her response and the tone of her voice caught him off guard for a second.

“I am sure you could have told us that, but no one here thought to ask you that question since our staff aren’t used to working with people who talk very much, let alone someone with a normal IQ.  Your situation is, so, well, rare, for a lack of a better word”.

He stopped to get his breath before he continued.  “The thing that is bothering us, is why you are even here, surrounded by some pretty retarded people, let alone why you have been in other state institutions for so long.  As far as we can tell from your records, you have been in one institution or another since you were a teenager.  It seems almost impossible to find your IQ, or intelligence level to remain exactly normal after all that time, and for you to be in the wrong place, surrounded by people who are so much less able to care for themselves.  I mean you were admitted on July 7^th 1933, which was 42 years ago.”

Jim continues, still looking at Anna; “There is one other thing.  In looking at the records sent with you from the Carpenter Center, we notice that at one time, perhaps you had some seizures and a disease called Epilepsy.  Do you recall anything about that?”

“Maybe a long time ago” Anna replied in a somewhat softer tone, by now her eyes drifting, focusing on something far away, perhaps she was trying to figure out what this was all leading up to.

Jim waited a moment to see if Anna would add anything else, then he continues; “So the thing is, according to your records, no one has seen you have a seizure of any kind.  Now somewhere along the line you were put on seizure medication, which you still take, but our doctor tell us that the level of this medication found in your bloodstream is so low, it couldn’t possibly be controlling any seizures.  The other thing is that even if you did have Epilepsy, or some other type of seizure disorder, now-a-days, that would be no reason for you to stay here at New Start or live in any other institution.”

Madsen looks around the table as he asks, “Does anyone have anything else they would like to add at this point?”  No one spoke.  They were all transfixed on how Madsen was confronting the issue of the extraordinary test result and the terrible truth it exposed.

He returned his full attention to Anna; “The bottom line Anna, is that we can’t find any reason for you to be here.  You are as intelligent as any of us in this room, you take care of all your own needs,  and you are in good health.  So we need to find you another place to live, you can’t stay here, New Start  isn’t the right place for you.  We work with people here who are very mentally or physically handicapped.  I am sure I speak for everyone here in saying we all believe you can live a more independent life.  But before we get to where you should live, I want you to know that you have the right to leave here at any time you wish.  You are completely free to get up and walk out of here right now if you wanted to.”

“Oh sure, and where would I go?  Anna replied, her tone was again crisp and caustic, she immediately caught the irony in what Madsen was suggesting.  “I don’t know anything about money or how to do things for myself outside of here.  I haven’t a clue as to what things cost, or where I would even get money.  Someone would have to show me how to do things.”

“That’s true,” Jim replied, “But I just wanted you to know what your rights are.”  At this point, Madsen had to admit his view of the Anna’s life was shallow, without perspective.  He had assumed she would immediately want to be free of this place, to go out in the world, to enjoy life away from the severe limits imposed by institutional life.  He failed to consider that institutions were her home, they were all she knew.  He failed to consider that to suddenly pluck her out of her home and plop her down in the outside world would be as hard on her as putting her inside an institution was over 40 years ago.

“Have you ever thought about where you would like to live if you didn’t live in an institution?”

“Yes, I have always liked Minneapolis.  I was there a couple of times when I was young, and on some bus trips, I think that would be a good place to live.”

Copyright 2012

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 YOUNG WOMAN FROM IOWA

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.

WEST VIRGINIA PLAINTIFF

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.  

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.

TIME

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.

WORK

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.

SHARING

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.

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.

 “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 2^nd is the day Mr. Adams had in mind as the birth of our nation:

• The actual vote for  independence came on July 2^nd.
• The announcement of the Declaration of Independence was July 8^th  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 2^nd 1776.

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

Kirby V. Nielsen

Source; David McCullough John Adams

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