Bev

By Rory Janis Miller

Bev was an intellectually disabled little girl born at a time when such children were hidden away, many of them in state-run facilities constructed to house people that conventional society considered defective.  At the age of nine she was sent to one of the worst such institutions in the United States -  Pennhurst State School and Hospital. In those chaotic wards and day rooms Bev lost not only her childhood, but also her dream of going home.  While she languished at Pennhurst, her family struggled with overwhelming personal conflicts that tore them apart and pushed Bev further away from them.  Her brother and sisters barely knew her and rarely saw her.  Finally, after spending thirty two years in Pennhurst, she became part of a historic class action lawsuit that released her into the community to begin a new life and reconnect with the family she left behind.  Her story is one of lost hope, a second chance, and the harrowing journey in between.

• Language: English
• Publisher: Pine Top Press
• Release date: Mar 5, 2016
• ISBN: 9781524281953

Book preview

PREFACE

There is a photograph on the shelf above my computer, part of a small gallery of family pictures that watch over me while I work.  It is an 8x10 professional portrait in sepia tones showing six people, my family as they were late in the year of 1951 or early 1952.  It is unique, the only such portrait we ever had taken.  We all look very stiff, very posed, very serious.

On the far left of the photo is my mother Amelia, holding my baby sister Jonnie, around 14 months old, on her lap.  Mother is wearing a suit, the jacket buttoned up the front to the neck.  Although the sepia tones show no color, I remember vividly the colors of everyone’s clothing.  That suit jacket was light brown with brown and tan and coral colored piping that matched a checkered skirt with the same pattern.  Little Jonnie, in a blue plaid dress with a white collar, is happily playing with the laces of her scuffed white shoes.  On the far right stands my father John, dressed in a camel colored corduroy jacket with wide lapels, a dark sweater vest and a bow tie.  Standing between our parents is my nine and a half year old brother Greg, wearing a red plaid shirt and a navy jacket that he had yet to grow into.  Seated in front of Greg is myself, a bit past 4 years old. I am wearing a light blue short sleeved dress with two red plaid stripes across the bodice and two above the hem.  Sitting next to me, and in front of my father, is Beverley, age 8 1/2.  She has on a brown and white hounds tooth patterned dress with a large round collar and three quarter length sleeves, a dress I remember wearing years later as a hand-me-down.

Beverley is a beautiful child with dark brown hair, dark eyes under straight bangs, and a distant dreamy expression.  She looks angelic with her hands folded obediently in her lap.  Not long after this photograph was taken, that little girl entered an institution called the Pennhurst State School, and our family lost her forever.

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This book is the story of my intellectually disabled sister Beverley.  I can tell her story only through my own memories.  I explain how her experience affected me and our family, how my thoughts and feelings about what I witnessed haunt me to this day.  Piecing the story together hasn’t been easy.  Our mother, who was never forthcoming with information about Bev, had a way of suppressing many memories, especially the painful ones.  When pressed for facts she invariably said she just couldn’t remember.  Sometimes she truly couldn’t remember, but sometimes she simply didn’t want to discuss it.  Now she is gone, our father is gone, and so are the few other relatives who could have supplied information.  The only person who knows the whole story is Bev, and her memories are locked away in her mind just as she herself was once locked away in an institution.  Luckily, a wall of medication keeps the nightmares contained - most of the time.  I am happy for her oblivion.  And so I tell the tale as remembered by myself, with help from my younger sister, Jonnie and older brother, Greg.  To our memories I have added facts gleaned from Beverley’s Pennhurst records and other documents, as well as additional material from books, Internet sources, and interviews.  The story that emerged is a puzzle whose pieces don’t always fit, with some pieces missing, with no final solution.  One of Bev’s favorite activities, and one she is very good at, is putting puzzles together.  What a pity she couldn’t help me do this one.

When I set out to unravel the puzzle of my sister, I had very little information to go on.  My parents and other relatives who would know about Bev’s past are all dead.  When Greg, Jonnie, and I got together to compare our memories, we realized that we knew very little about our parents and even less about our sister. To make matters worse, my father could tell a lie with the best of them, which always made it hard to know what the truth really was.  For all of those reasons, much of our family history remains shrouded in mystery.

When it came to Bev, both our parents avoided talking about her in any detail.  Though we knew that she became a resident of the Pennhurst State School and Hospital in southeastern Pennsylvania, we had only the vaguest idea of how or why that happened.  Luckily for me, there were records from Pennhurst stored at the Norristown State Hospital that provided me with a great deal of information about Bev’s case history.  It was from those records that I pieced together my mother’s journey through hospitals and doctors’ offices in her quest to get help for her daughter.  Once Bev was admitted to the Pennhurst State School, those same records documented much of her experience in the institution.  Getting at these records wasn’t easy.  They were stored in a musty old building and made available only through the generous efforts of two staff members who were willing to work in the building for one day every few months so that family members or approved researchers could come in and pore through the stacks of documents.  The state hospital bureaucracy seemed to make it as inconvenient as possible for anyone to find or use those records.  Indeed, their contents were not for the faint of heart.

I spent many uncomfortable hours in that depressing, derelict old building sifting through hundreds of pages of letters and reports and ledgers documenting my sister’s official life history.  Most of the story about what happened clinically with Bev in those very early years is contained in copies of four reports dating from October 1951 to February 1952.  These brief reports shed some light on Bev’s diagnosis and track the efforts Mother made to find help for her within the medical system, from her first encounter with mental health professionals to her eventual admission to the Pennhurst State School.  These documents are a puzzle in themselves and contain many discrepancies that give an unclear picture of Bev’s mental condition.

I’ve tried to piece together Bev’s confusing journey through a maze of physical exams and psychological tests, but in those days record keeping was not what it is today.  The information is poorly arranged and typographical errors abound.  It was also disturbing to discover that opinions often seemed to carry more weight than facts.  By today’s standards these reports seem rambling and disorganized, very unprofessional, yet the people who wrote them were respected members of the mental health community.  When I read the reports I have to wonder why the people involved made the decisions they did concerning Bev’s treatment.  In the cold light of 20/20 hindsight, these haphazardly typed reports are a sad testimony to an antiquated mental health system that failed Bev and so many others like her.

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BOOK ONE––––––––1943 - 1952

The First Night

Nine-year-old Beverley lies awake in her bed listening to the thumping of her heart, not quite loud enough to drown out the strange night sounds around her.  Last night she slept at home in her own bed, her little sister breathing softly in the bunk above her, her big brother close by, and her parents below her in their bedroom downstairs with the baby.  Tonight she is sleeping in a dormitory full of unfamiliar children, snoring and grunting and sniffling around her in the darkness.  After being fed and bathed, she was put to bed by strangers in a strange land.  She had fussed and cried and pleaded for her mother, to no avail.  She is alone, lost in a clinical wilderness.  Her fear paralyzes her.  It is hard enough to think clearly at the best of times, but tonight her mind is a white wall of blind panic.  She does not know what has happened to her. She cannot know that she has been committed to an institution, that this night is just the first step of a journey into insanity, that what she had suffered in her soul before is nothing compared to what is to come, that thirty two years of nights far worse than this lay ahead of her, that hell is a place and she is in it. The name of that place is Pennhurst State School, Spring City, Pennsylvania.

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~1~ ––––––––The Journey Begins

Monday’s child is fair of face, Tuesday’s child is full of grace, Wednesday’s child is full of woe...  Traditional Children’s Folk Rhyme

When our parents ran away to Elkton, Maryland to get married, Mother was already pregnant with my brother Greg.  Seven month pregnancies were not uncommon in those days.  They had no intention of returning home after the clandestine civil ceremony, but fate brought them back for a funeral when one of  Mother’s sisters passed away.  They stayed, and it wasn’t long before they settled down in their own little house with their new baby son.  Just a year later, they prepared for the birth of their second child.  This time it would be different.  They were married, they had a house, Dad had a good job.  As it turned out, it was very different, indeed.

She was born on a rainy Wednesday, June 9, 1943, a gloomy Pennsylvania day with low hanging clouds and a spring chill in the air.  She was their second child, an adorable girl with a full head of straight black hair, and they gave her the name Beverley Lynne.  Though she arrived full term after an uneventful pregnancy, what should have been a normal delivery somehow went wrong.  Our mother was not sure about what happened, but she told us that her regular obstetrician was not there, that an intern delivered the baby, that the baby came quickly and that no one was prepared.  She firmly believed this intern injured her baby when he used forceps to assist the delivery.  However it happened, somehow damage occurred to Beverley’s brain, either at birth or shortly thereafter, and their beautiful newborn daughter did not develop normally.

I don’t know exactly when our mother first realized that Beverley wasn’t developing normally or when signs of trouble first appeared.  Eventually it became apparent that Bev was on her own timeline for sitting up, crawling, walking, and talking, progressing more slowly than most children.  She took longer to reach each milestone and struggled to get there.  Mother never discussed these things with us in any detail.  When questioned, she gave only the briefest answers and always claimed not to remember the particulars.  Nevertheless, she already had one healthy baby, a boy exactly one year older than Bev.  Even though Mother was young and relatively inexperienced, she must have been aware of the obvious contrast between Bev and her older brother Greg.  The truth couldn’t be ignored, and it wouldn’t be long before our parents understood the frightening fact that Bev was going to present them with a formidable challenge.  For these naive young people, that challenge would become overwhelming.  Her birth was the beginning of a long journey which would take them to places no parent should ever have to go.

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When Bev was born our parents had been married less than two years and were struggling to make ends meet during the Second World War.  Life was tough for everyone.  Typical of many couples in those days, our parents married young - our mother nineteen, our father twenty.  Most women didn’t have careers, they had families.  Years later I asked Mom one of those kid questions, Why do people get married?  They get married to have children, she said.  Can’t people have children if they’re not married?  She didn’t have an answer ready for that one.  I spent my preteen life thinking that once you marched down the aisle God somehow knew you were married and sent you some kids.  It was a rude awakening when I found out otherwise.

Our own parents never actually marched down the aisle.  They were wed by a justice of the peace in November of 1941, just two weeks before the attack on Pearl Harbor and the entry of the United States into World War II.  Although he was drafted, our father somehow managed to fail the service requirements and never enlisted in the army, fulfilling his duty by working in an aircraft factory instead.  It was not an auspicious time to start a family, especially when their marriage had already gotten off to a shaky start.  My grandmother refused to give her permission for Mother to marry Dad, forcing them to elope to Maryland and marry in secret.  Because Mother was already pregnant, they had no time to wait for Granny to change her mind.  They were a mismatched couple in so many ways, and the differences between them did not make for an easy road when the going got rough and important decisions needed to be made.  They both brought emotional baggage with them that prevented them from building the kind of strong foundation in their relationship that would help them cope later with the demands of raising a family.

Our mother, Amelia, was born in 1922 into a family of Polish immigrants in Hadley, Massachusetts.  When she was very young her family moved to Reading, Pennsylvania and settled into a corner row house in a Polish neighborhood.  The house sat on a steep hillside street across from a cemetery where Mother would one day bury her fourth child.  She had two older sisters and a much younger brother.  When she was around twelve years old, her father died from tuberculosis, leaving her mother to take care of four children on her own.  Polish was Mother’s first language at home, in their neighborhood, and at her Polish Catholic grammar school, and it wasn’t until she attended Reading High School that she entered an English speaking world.  Our grandmother ran a corner grocery store in the front of their house, one room crammed with the necessities of life, from milk and bread and deli meats to ice cream and penny candy.  During the Great Depression of the 1930’s, she not only supported her own family, but also kept the neighborhood fed by extending credit and running tabs, many of which were never paid.  Though Granny was tough in many ways, she had a soft heart that the neighbors were all too willing to take advantage of.  Life was difficult for her and her children during the Depression, but thanks to the store, there was always food on the table and a roof over their heads.  Everyone needed to work hard, and Mother and her sisters spent endless hours waiting on customers, doing household chores, and taking care of their little brother, Joe.

After high school, Mother’s two older sisters, Mary and Anna, were lucky enough to be able to attend Kutztown State Teacher’s College, a small rural college not far from Reading.  While her two older sisters were away studying at school, Mother was needed at home to help out in the store as well as to care for her young brother, who was sickly and in and out of the hospital often as a boy.  However, only one of her sisters ever graduated from college.  Anna, who became ill with tuberculosis and passed away, never had a chance to finish school. Mary did graduate, but instead of using her college degree, she went on to study cosmetology and opened her own beauty shop in Reading.  After Mary opened the hair salon, Mother also went to hairdressing school so that she could work with her sister in her shop.  So it was that our mother, highly intelligent and academic, wound up toiling away in her sister’s beauty salon and in our grandmother’s grocery store instead of going to college.

Disappointed that she never got her chance at college and resentful of the fact that she was relegated to a life of drudgery instead of opportunity, Mother wanted desperately to escape and become independent.  She was beautiful, intelligent, and full of life.  At the same time, she was naive and immature and emotionally vulnerable.  When a handsome young man named Johnny Miller pursued her until he swept her off her feet, she fell in love and dreamed of a chance for a new life.  If college and a career were not in the picture, she hoped that marriage and her own home and family could help make her feel fulfilled.  When she married our father and gave birth to her first baby much too soon thereafter,  our grandmother was furious.  Her daughter had gone off and married a brash, fast talking rogue instead of a good solid Polish Catholic boy like her older sister had.

Since her family was dead set against her choice of husband, she had to settle for a hasty elopement instead of a proper Catholic wedding.  To his credit, Dad did try to win Granny over any way he could.  After their rebellious marriage, Dad thought he could smooth ruffled feathers by converting to Catholicism.  He dutifully went to see the local parish priest to begin the process, which turned out to be very brief.  After just a couple of sessions of indoctrination, Dad told the priest to go where no priest ever should, and stomped out of his office.  My mother wound up becoming a Protestant.

As a result of her strict upbringing, Mother harbored feelings of resentment against our grandmother.  Sometimes she painted Granny, who seemed to us like such a sweet little old lady, as a stern taskmaster.  She told us of having to sit and embroider tablecloths and crochet doilies in the evenings instead of going out with friends.  She complained of waiting on fussy customers and stocking shelves in the store instead of meeting boys and going dancing.  And instead of sitting in a beauty salon to get her own hair done, she spent her Saturdays shampooing other women’s hair and sweeping up in her sister’s shop.  She saw her little brother Joe as the favored child, the spoiled baby of the family, and she was unhappy about having to watch over him and wait on him when he was sick.  Jealous of her two older sisters who got the opportunity to go to college while she was stuck in the role of Cinderella at home, she felt overlooked and over worked.  Since for her there was no fairy godmother to intervene, when someone who resembled Prince Charming came along, Mother seized the chance and ran off with him.

After her hasty marriage, she gave all her energy to her new family.  Once she had made her decision, she stuck with it and wound up sacrificing everything for us for the rest of her life.  Growing up, she had learned the lessons of hard work, honesty, and perseverance.  Unfortunately, she had not learned independence, self confidence, or assertiveness.  Later, when the time came for her to stand up for Bev, she didn’t have the tenacity to question or challenge.  Instead, she was unfailingly polite and compliant and honest and trusting.  She never learned that sometimes it doesn’t pay to be nice.  It would have been helpful if Dad could have provided the assurance that Mother lacked, but in the self esteem department, he was no better off than she was.

Our father, John, was born in Reading, Pennsylvania in 1921 to parents of German descent, their first and only child together.  His young mother Maude died when he was only two years old, leaving his father to cope on his own with an active toddler.  His father had a younger sister, Ruth, who was still living with their parents at the time of Maude’s death.  Dad was placed in that household to be looked after by both his grandparents and aunt, who took care of him while his father worked to feed the family and to rebuild his life after losing his wife. This supposedly temporary arrangement soon became permanent, and Ruth gradually took over the role of parent, raising Dad as if he were her own child.  As time went on, his father became less and less involved with him, and their relationship grew ever more distant.

Eventually our grandfather became involved with another woman and remarried.  He and his new wife set up their own household, one that did not include Dad, and raised a son there.  Even though the two boys were technically step brothers, they barely got to know each other.  They grew up like strangers, in separate homes.  We heard occasional references to this mysterious uncle in conversation, but we never met him, and Dad rarely spoke of him.  Not surprisingly, Dad carried a bitter seed in his heart for his father’s rejection and apparent preference for his second family.  His father’s lack of affection just reinforced the feelings of abandonment that had begun with his mother’s death, and those feelings plagued him for the rest of his life.

When we were children, Dad and his father had apparently made peace enough so that we could visit on occasion, but our grandfather seemed like a stranger to us and his wife had no affection at all for Dad or his brood.  She ignored us as if we didn’t exist.  When we did visit their home, we children sat stiffly on the sofa in their stuffy living room, afraid to move or speak unless spoken to.  Even Dad, the perpetual charmer, was ill at ease.  They had a little black and white Boston terrier that we loathed.  She was the darling of the household, allowed to sniff us and jump on us and growl at us at her pleasure.  I am a dog lover, but to this day Boston terriers make me wrinkle my nose.  They doted on her, though, and she returned the favor.  It seems appropriate that when our grandfather died suddenly from a massive heart attack after taking her for a walk, she was by his side.

In reality it was Aunt Ruth who raised Dad and devoted herself to his care and well being.  Although she eventually did get married, she never had children of her own.  She was a tall, statuesque woman, very attractive and glamorous.  With her smart clothes and glittery jewelry and fur coats, she looked like a movie star.  Her choice of husband however, was an odd one.  She married a short, thin, Milquetoast fellow who always smelled of whiskey and spoke so softly you could barely hear him.  They lived in a small apartment decorated with white rugs, blonde furniture, and mid century knick knacks including lidded crystal dishes filled with stale candy.  Ruth adored our father and affectionately called him Mugsy.  To her, he was a son, and we were her grandchildren.  It was Aunt Ruth who always made sure we had Christmas gifts and Easter baskets and birthday presents, and who provided financial help to our father when he was down and out.  Though she did her best to make up for his loss, he never got over his abandonment by his real mother and the later rejection by his father.

Dad never matured emotionally, and he held on to his childhood trauma for the rest of his life.  His quest for love in all the wrong places never failed to ruin all his close relationships.  When he married our mother, like her, he felt that he was breaking out to start a new life.  He had high hopes for the house with the white picket fence, where he hoped to find