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A Hidden World

 

Chair in roomThere is a hidden world behind those walls and many dark secrets down those halls in lives thrown thoughtlessly in the air, determined only by a toss of the dice as the ultimate personal sacrifice. But what do most people care when they do not see the extent of the damaged identity, which has been forever altered by fate with the only option left to incarcerate in institutions whose purpose it is to accommodate?

During the years our family lived in Chicago, Illinois, and then in Victoria, British Columbia, my parents would take trips to check out long term care facilities for my developmentally disabled sister, Karen. Back in the day, these facilities were actual institutions – and not very good institutions at that – except for one we visited in Valparaiso, Indiana, that was run by the Lutheran Synod of Churches. It would have been a wonderful place for Karen to live, but it was very costly and my parents could not afford it. They also researched long term care facilities in Illinois, Wisconsin, and Minnesota as well as British Columbia and Washington State.

I accompanied them on many of their trips to each of these state run facilities which, by and large looked more like old mental institutions than anything else. I have to say the places we visited were largely in disrepair, the residents were dirty, and you could tell the care was minimal, if non-existent. One of those institutions which shall remain nameless actually housed the mentally insane in the same building as the developmentally disabled residents. The storied building looked like the mental institution in the movie “One Flew over the Cuckoo’s Nest” and I expected to see the somber, snarling Nurse Ratchet pacing those dark hallways. Needless to say, my parents definitely were not going to consider putting my sister in that one

When the family moved to the Los Angeles area leaving me behind in Canada with my husband and infant son, they found a facility that I thought was by far the best one of all (except for the Lutheran one in Valparaiso.) They had bought a house in Diamond Bar and the long term care facility was only a mere ten minutes away which was perfect for my parents to stay involved with their daughter, no matter where she lived. Pacific State Hospital as it was called then looked more like a children’s summer camp than an institution. It had separate buildings spaced out on the 400 acre grounds with gardens, playground equipment and picnic areas.

The early years of the long term care housing complex where my sister ended up living were fraught with archaic and somewhat barbaric beliefs regarding the developmentally disabled because that was all science knew at the time. Pacific Sate Hospital in Pomona, California, was first established on May 2, 1927 under the name of The Pacific Colony to house ‘feebleminded people’ who were thought to be a social menace in those early days. Individuals with developmental disabilities were locked away in institutions as inmates because of their assumed ‘insanity.’

The Pacific Colony housed 1900 inmates in 1946 and was the result of the application of the misguided and misused Eugenics movement which took root in the early 1900’s ‘for the purpose of improving the natural, physical, mental, and temperamental qualities of the human family.’ Founded by Charles Davenport, the Eugenics Movement Record Office collected data on various families relating to the physical, mental, and moral traits of their members because science thought these traits were genetically inherited. Their focus was on creating a race of people that only carried socially desirable traits. Does this sound familiar?

It should because Hitler applied the Eugenics philosophy in his supposed ethnic cleansing and genocide programs. The Eugenics researchers were particularly interested in the inheritance of ‘undesirable’ traits such as pauperism, mental disability, dwarfism, promiscuity, and criminality. That’s right. Pauperism was thought to be an undesirable genetically inherited trait. Poor women were sterilized, so as not to pass their ‘social defect’ of being poor on to future generations.

Also, women who got pregnant out of wedlock were considered to be insane under the ‘promiscuity’ definition and were locked away in institutions for the rest of their lives. Their male partners were naturally held blameless because men couldn’t be promiscuous per se according to the socially accepted definitions, but, conveniently, they were also the ones deciding the parameters of acceptable human behavior and coining the terminology to match. Forced sterilization of the undesirables based on the assumption that unwanted human traits were genetically inherited became a hallmark of the movement.

The name of the institution was changed to Pacific State Hospital in 1953 and the new prevalent philosophy at the time was that the ‘patients’ were considered to be merely sick and needing treatment to become well. This was a giant leap from believing in genetically inherited defects to the assumption that these traits were the result of physical and mental disease. The introduction of socio-psychologists and in-house trained nurses helped patients prepare for living in the broader community and the Eugenics movement thankfully became a thing of the past.

When the Lanterman Act was passed in Sacramento in 1969, ensuring civil rights to the developmentally disabled and guaranteeing them life long care services, there was another name change at the facility in 1979 to the Frank D. Lanterman State Hospital and Developmental Center. People were now perceived as individuals with special needs and referred to as ‘residents’ who received progressive habitation training through daily living services at the facilities. Those services included skill training; specialized medical and dental care; physical, occupational and speech therapies; language development, vocational programs; high school classes; and leisure and recreational activities such as holiday parties and Special Olympics.

Lanterman Developmental Center contained nine resident buildings, one hospital, a few training and work sites, a vocational training center, recreational facilities, a playground, a camp, a carousel, a track, and a ballpark. The four hundred or so acres were sandwiched between the cities of Diamond Bar, Walnut, and Pomona, California. The complex could comfortably house 700 to 1000 residents although, during some years, there were more and it became a part of the California Office of Protective Services.

The developmental disabilities accepted at the Center ranged from Down ’s syndrome, autism, the catch-all terminology of pervasive developmental disorders, fetal alcohol syndrome, cerebral palsy, and intellectual disability or those with IQ’s below 70. I might add that people damaged by drug overdoses, people with rare diseases that debilitated them, people becoming quadriplegic through traumatic accidents or babies with hydrocephaly were also housed at Lanterman. The causes of many of these disabilities were (and still are) unknown in the majority of cases and they affected only 1-2% of the total population of the country. Developmental disabilities have also been twice as common in males as in females.

After most of the residents had been passed over to their families for care, Lanterman State Hospital and Developmental Center was finally closed on June 30, 2015, largely as a result of state budget cuts and a falling new resident population. The land and buildings were transferred over to the California State Polytechnic University for educational use and management. As of 2016, there are only three developmental disability centers left open in the whole State of California and those will be closed by the year 2021.

The last time I drove through the grounds of Lanterman was in 2012 and the wards were empty and dark. The only lights that were on were in the hospital, so I assumed there were still residents housed in there who had either failing health or who had no family left or both. Many residents had families who just dumped them off at the door and took off, never to return for whatever reason. I just could not reconcile that those children were rejected out of hand because they were supposedly imperfect with parents too immature to handle their condition and too insensitive to continue to visit every once in awhile in order to stay a part of their child’s lives. Thank god my parents were not like that with my sister.

According to the research article, the number of new applicants to these developmental centers dropped precipitously in the last few decades, leaving state officials to conclude that the long term care facility was no longer needed. Why this happened is anyone’s guess – possibly because of advanced prenatal screening in the medical field to sort out those embryos that would not be functional in their lives for whatever reason as well as advanced medical treatment to correct abnormalities either pre or post partum. Most of the states in the nation have done the same – closed facilities for the sake of the bottom line. I don’t think it’s fair, but that is the name of the game when the monies to fund these long term care facilities were scarce and almost non-existent especially during the Great Recession.

My sister, Karen, entered Lanterman gradually when she was twenty-one years old, and she visited part time during the week until she became comfortable with the environment and the people. Eventually, she moved to the long term care facility full time and settled into her little nook in one of the wards which was populated by people with similar disabilities. She had her little bedroom sectioned off with a single bed and dresser that my mother decorated with a comforter and stuffed animals.

Eventually, Karen seemed to like her little bedroom nook and new home with new friends more than she liked going home, so I can only assume she was comfortable there. Caring for a developmentally disabled child is a grueling twenty four-seven proposition and my mother lost ten years off her face when they put Karen in full time because Mom could sleep through the night and not worry that her daughter was juggling with the kitchen knives after bedtime or eating all the food in the fridge before breakfast or deciding to take a walk down the center of the street after midnight.

Tragedies can come in threes. I moved from Seattle to Diamond Bar in July of 1986 with my twin girls just after my father died of a sudden coronary in April of the same year. My mother was devastated with the loss of my father who had been her husband for almost fifty years. To complicate the situation, my sister, Karen, had been diagnosed with terminal cancer of the liver the year before and my mother needed help surviving her care and all the personal tragedies.

I also needed help managing with two children after my house went into foreclosure in the Seattle area. My son stayed in the Pacific Northwest and is still there to this day. As it turned out, my mother’s mother died six months after my sister did, so that was three close family deaths within fourteen months that our family had to endure. Life sucks sometimes, but hardships can lead to hope and it turned out to be a kind of blessing for all of us – my mother, my girls, and me – and even my son.

I started going down to the Lanterman Developmental Center with my mother to walk my sister through the gardens in her wheelchair in the evenings because her stomach had bloated up with the cancer and she could barely walk with difficulty. This was after she had been transferred to a wing in the hospital where the medical personnel could monitor her medical status. The residents of the hospital ward that I got to know were varied in their disabilities and had been housed in rooms with others that had similar disabilities. My sister was the only ambulatory one and had a room of her own that my mother had also decorated.

There was also a separate hospital ward for hydrocephalic babies where my younger sister, Carole, had worked as a volunteer one summer. She said that she would come home every night just crying her eyes out because the prognosis of these babies was terminal. Their life span was only a couple years because the medical profession had not created drain shunts to drain the fluid off the inside of the skull like they do today, so the infant brain can develop normally. Most of the babies with huge heads would just lie in their cribs all day and many had been dumped off at the hospital as well, never to see their parents again.

Kathy Gianos had been a resident for most of her life. Born in Greece and relocated to California, she had developed an undiagnosed condition which atrophied her legs and arms to the point where they became non-functional and turned inward, leaving her a quadriplegic. Her family could not care for her around the clock, so she was transferred to the earlier Pacific State Hospital for long term care. When I met Kathy the year my sister died, she was in her forties and had an electric wheelchair that had a control on the right arm which she could manipulate with a few of her right hand fingers.

Her neck bent forward which pushed her head downward, but she could talk into her chest and there was nothing wrong with her mind. She would see us walking my sister around the grounds in her wheelchair after dinner and would race to catch up with us, so she could gossip about what was really going on at the facility. She always knew when the head honchos from Sacramento were coming for an inspection because she said the cafeteria workers brought out the crystal glassware, the silverware and linen tablecloths which they never used for the residents.

She had told us she had acted as the resident representative of Lanterman Developmental Center in legislation sessions at the State Capitol regarding conditions at the state hospitals for the developmentally disabled for a number of years. They would fly her to Sacramento for information gathering sessions in the legislative chambers and she would always speak the truth while sometimes giving them a piece of her mind if conditions were wanting. Kathy worked at the post office every morning and was able to take the Lanterman shuttle van to Walmart when she wanted to shop for the day or to Denny’s when she wanted to eat out. Kathy’s brother and his family lived in Pomona, so, unlike many of the residents who had been dropped off and abandoned, she had regular visitors.

When she heard that the State Legislature was thinking of closing Lanterman in a few years, she became livid and exclaimed that “those assholes in Sacramento didn’t know what the hell they were doing!” She explained that she had to be lifted onto the toilet and lifted into the tub as well as dressed and fed everyday, so how did they think she was going to survive living on her own?! She protested that they were all “bastards with fucking loose screws in their heads to think that closure of the facility and releasing residents out on to the street was going to work!” That lady did not want for explicative terms and, inheriting the strength of Hercules, she had endured with gusto!

Then there was Maria who was a pretty illegal immigrant from Mexico who tried to cross the interstate 8 freeway near San Diego with her husband after they had slipped over the border before the wall was built. Her husband made it across, but she did not and she was hit by a car that broke her back. The accident left her a quadriplegic with use of one hand and she could motion with her lower arm to attempt to tell the aides what she wanted. She could not speak English, but seemed to know generally what people were saying and there was nothing wrong with her mind. She knew what was going on. Unfortunately, her husband finally stopped visiting her and she never saw him or her family in Mexico ever again.

I joined her in the common room one day while the aides were bathing my sister. The television was tuned to a sitcom that she was watching as she sat in her wheelchair and I think it may have been a rerun of “All in the Family” with Archie and Edith Bunker. When I laughed, Maria would look over at me and laugh, too. We enjoyed the show together until it was over and then Maria started pointing to her lap and blinked her eyes. I told her I didn’t understand what she wanted, but she repeated the gesture a little more forcefully. I waved down an aide passing by in the hall to get someone to help her, but it took awhile for the proper medical aide to arrive.

It turned out she was pointing to her crotch and signaling that she had to go to the bathroom, but the aide still had not come. Not able to hold it any longer, she voided herself through the seat and urine ran all over the floor. Maria looked up at me sheepishly and, since I didn’t want her to feel any shame, I pointed to the floor, said a quick ‘Ooops!’ and started laughing. Well, she knew what I meant and started laughing with me, pointing to the wet puddle on the floor as well. The aide finally came and cleaned up the mess with a mop and bucket before wheeling Maria down the hall to her room to get dry clothes on. After that incident, she would try to join Karen, my mother, and me in the common room anytime she could.

Kathleen was another sad case. She was in her late teens that summer and she had suffered an overdose of drugs that had damaged her nervous system to the point where she would go into convulsions every time someone touched her. Since they had to bathe her everyday for hygienic reasons, special aides would have to attend to her bathing and her convulsions. She just lay in her bed staring off into space most of the time. I got a couple of smiles out of her when I passed her room and waved at her, but her condition killed her eventually and she died in her mid twenties.

Liz was another resident who had suffered a spinal chord injury and was permanently in a wheelchair. She was a paraplegic though and could feed herself and comb her hair. I don’t recall her ever speaking, but she was animated and would smile often. She also gravitated to my sister, Karen, as well as Maria when they went to the common room to watch television. I never could find out the story behind Liz being in Lanterman, but I did meet her mother who came to visit her faithfully every week. Liz was one of the lucky ones.

When I met Jerome, I was taken aback by the appearance of a middle aged man with graying hair in a wheel chair holding a teddy bear close to his chest. Jerome was in his mid fifties when I was there that summer and he had the mind of a five year old in a man’s body. He could speak quite well and, when my mother came to see Karen, he would rush down the hall in his wheelchair to greet her with “Hey, Lady!” Jerome had been there most of his life and he would complain if the aides did something that he did not approve of, chastising them with verbal exuberance. He always rode his motorized wheelchair into each of the rooms every day as if he were checking up on all the residents in there.

Then there was Bill who was in his sixties and also confined to a wheelchair. Supposedly, he had been brain damaged by an alcoholic father who would beat him with his fists. I found that out one day when Bill stopped me in the hallway and said he wanted to talk, so I stood by his wheelchair and asked him when he had moved into the center. He replied in very simple, broken phrases that he was a teenager when he came to Pacific State and his parents just dumped him off and left.

He explained that he didn’t speak very good and his brain didn’t work well because his dad used to beat him around the head with his fists when Bill was bad. He explained that his dad liked the moonshine too much and would lock him in the shed with no food for days, even in the winter. He added that he became scared of small spaces because of ‘that fuckin’ shed.’ His dad was always drunk and his mom was too afraid of him to do anything, so that’s the reason Bill couldn’t learn to be on his own. He also explained that he helped the landscaping crews dig holes to plant all the trees on the grounds back in the early days and added that he had planted so many trees that he felt like the place was his. Bill would call me ‘Hey, Missus!’ when he saw me.

One day while Karen was having her bath, I wandered down the hall and through the rooms which had four beds in them. I came across one bed where an ‘elephant boy’ lay. One side of his head was enormous, his face horribly disfigured, and his body was hugely deformed. He had the extremely rare disease called Proteus Syndrome in which a mutant gene causes asymmetrical growth of various body parts like legs, arms and hands, spines and heads. Richard Merrick, a nineteenth century Englishman who became the main character in the movie, “Elephant Man,” had this debilitating disease and he also ended up in a long term care facility before he died in his mid twenties due to the weight of his head when he lay down suppressing his airways, so he could not breathe and he suffocated.

The boy in the hospital bed just lay on his side all day long staring off into space and I asked the aides if he knew what was going on around him. They said they didn’t know because he never responded to voices or touching or anything, even with blinking his eyes. The truth be known, people born with this rare disease usually have normal intelligence, but you never really know if he knew when he didn’t communicate that he was aware of his surroundings or verbalize his needs. He was literally imprisoned in his deformed body unable to interact with anyone. I smiled at him when I passed by just in case, but there was no reaction. It was like I wasn’t even there.

Needless to say, he, too, had been abandoned by parents too emotionally immature to even handle visiting him once in awhile. This all brought to mind that some people aren’t equipped to be parents and they end up running when the road gets rough because they can’t handle it emotionally. I think there should be a degree requirement for parenting for everyone because it should be for better or worse until death do us part, just like marriage. These kids didn’t ask to be born into this world and look at the horrible hand they were dealt. It just boggles my mind sometimes if I dwell on it too long.

My sister had her 36th birthday party in late September of that year and all of her friends came, including Kathy Gianos. My mother and I bought party hats and blowers as well as cake and ice cream to take to the Center for a birthday party for Karen. We had some gifts for her as well as small token gifts for all of her friends. The aides set up a long table in the television room and we decorated it with a party table cloth and matching paper plates with balloons on the walls before the residents came.

Across the table from where I was, Karen sat down next to my mother who was next to Maria. If my sister was in any pain with her extended stomach, she didn’t show it. She actually looked excited to be having a birthday party in her honor. Jerome and Bill sat next to me, Liz was on my other side, and Kathy Gianos sat at the end of the table. My mother stood up and lit the candles on the cake after which they all sang the birthday song as best they could. Karen took a shallow breath and managed to blow out the candles before I cut the cake, placed slices next to scoops of ice cream on the paper plates and passed the plates around.

Kathy, Maria and Liz had to be fed by the medical aides, but Jerome and Bill were doing just fine … until Bill’s piece of cake fell off his fork and on to the floor. Bill muttered a four letter word under his breath which set Jerome off and he responded with it was a bad word, so don’t say it. Bill looked over at him and said plainly to his face – “ Fuck!” Jerome’s face went red and cried out to Bill not to say that dirty word because he would get a spanking. I heard Kathy mumble “Go, Bill!” between giggles at the end of the table.

Well, Bill enjoyed pushing Jerome’s emotional buttons, so he spat out “Fuck! Fuck! Fuck!” in Jerome’s face in succession which caused Jerome to have a conniption fit. With that, he hit Bill on the arm with his teddy bear and yelled that Jesus didn’t like bad words! Bill responded by loudly repeating over and over again in Jerome’s “Fuck – fuck – fuck – fuck- fuck – fuck!” which almost made Jerome pass out! By this time, my sister was laughing so hard that she almost fell out of her chair. My mother laughed hard, too. Maria just sat there eyes wide, but you could see she knew Bill had a potty mouth. Liz giggled a little next to me and the small piece of cake smiled up from the floor, never to be retrieved. It had been a great birthday party and just as well because my beautiful baby sister, Karen, passed away of liver cancer within weeks of her birthday. Now, they are all gone and the lights at Lanterman Developmental Center have been turned off.

Most people on the street are not aware of this hidden world within a world where babies are born physically and mentally damaged to the point where they do not grow up normally nor will they ever be able to fend for themselves or live on their own. Most of them need care twenty-four-seven. I have always thought that the Right-to-Lifers should be required to visit one or two of these long term care facilities, just so they could see first hand what kind of life those babies had after they were born into this world. Only when they saw these disabled children first hand would they know that preserving the right of every baby to be born may not be such a good thing after all because many of those babies end up imprisoned in the hell of their useless bodies and minds.

To me, it becomes a matter of quality life versus quantity life and the medical aides I talked to at the hospital agreed. God doesn’t allow only perfect babies to be born as the hidden world of Lanterman Developmental Center showed and people need to know that when they spout their platitudes of righteousness to the masses, passing anti-abortion bills. Pro-Life means just that and those that vow to protect the unborn should also be the ones protecting the lives of the born, no matter what condition the babies are in or at what cost. To do any less equates with hypocrisy at the base level and it leaves those unable to care for themselves in harm’s way … unless they happen have access to compassionate and effective long term care like Lanterman Developmental Center provided for them. To my beloved sister and all those individuals who, for whatever reason, ended up living in this hidden world, I want to say “God bless you all.”