Should the Profoundly Mentally Handicapped Get Reparations, Too?
Geraldo Rivera exposed the outrageous treatment of the mentally handicapped at Willowbrook. As we discuss Reparations, my own view is that if we give them we should give them to all the groups who have been treated unfairly in America. Thinking about this made me dig out a story I wrote over 40 years ago. Back then we were politically incorrect. I wrote it on a typewriter, don't know if we even had computers back then. Writing this story was very cathartic for me. It had always saddened me to see my brother so handicapped and not to be given the same rights that I had. Writing this story lifted that sadness from me.
I scanned the original story into my computer. Then changed it from a pdf document to a word document and then copied and pasted it here. When I copied and pasted it, I lost the formatting. So, although, the words are here - the formatting isn't. Sorry about that. Just didn't want to retype all 20 pages here.
Bonnie Calcagno 1
She Had A Retarded Brother
It was hard for her to pass by him in the house as she went about what she was doing, to always see him there, just sitting, often alone, doing nothing, unable to do anything unless she did it with him. If only he could play by himself, she thought. Even when she was away from him, enjoying a beautiful day, she knew he would not feel the warm sunshine unless she took him out. She wondered what it would be like to get up in the morning and not have a retarded brother to think about, to just think about herself; but then, people needed to live interdependently, she reasoned: to alternately be needed, to lean on others.
She remembered the day he was born, champagne, a second son, how they picked a name for the sandy-haired infant with blue-gray eyes. He was such a good, beautiful baby. She remembered that day, when he was six months old, seeing her mother sitting at the kitchen table, crying, after a visit to the baby's doctor, after learning he was mentally retarded. It was 1959, before John Kennedy had become President, had made mental retardation a matter of public understanding through knowledge of his retarded sister. Her 42 year old mother sat crying, alone, not knowing what mental retardation was. If he starts affecting the lives of your other children, the doctor had counseled, you can put him in an institution. But there was really never any question that they would keep him. Some people go crazy for their dogs, her father had said, how can you put away a son.
Strange, she thought, how differently people react to the retarded, how just seeing him aroused fears in some young mothers about how they would cope with it if they ever had a retarded child. It bothered her how, when he was older, some people would pass him by as if he didn't exist, not knowing how to act near him. She saw the expectant look in his eyes as they passed him, maybe if he were a dog and could wag his tail, she thought, they would have understood. She knew he had the same needs for warmth and love and relationship that she had, she saw him smile and laugh and cry and feel the way she had felt, but because he was so different, some people didn't understand.
Developmental milestones were late in coming to him: he was late in turning over, late in sitting up. But her family loved him, took him out with them wherever they went, appreciated each new thing he learned to do. During Christmas when the house was filled with the music of the season, he said his first words - jingle bells. He learned to unwrap his own gifts. The family bought him all sorts of inappropriate toys, a tricycle that he would never learn to ride, but though trial-and
error, through the years, they grew in their understanding of him.
As a youngster he would sit on the floor, legs folded up near his stomach in a way that amazed everyone with the flexibility of his body, and rock himself in time to the music he loved to listen to. Although he never crawled, he learned to propel himself around the house by pulling his body along with his legs while seated and sliding along the fl0or. Her family wondered if he would ever walk. Then one day, while her parents were out riding in the car, they saw a little boy playing in his yard who looked almost exactly like their son. They stopped to talk to the parents of the child who so resembled their son, and learned that he had Down's Syndrome. In talking about their children, her parents found out this boy learned how to walk when his mother and father bought
him orthopedic shoes at a store in another state that took special care in fitting retarded children.
When her parents returned home and told her about the little boy, she was amazed there could be a child who looked just like her brother. Not long after, her parents went to the recommended shoe store, and at the age of four, saw their son, get up, all of a sudden, and start walking in the living room.
Life was like that, growing up with a retarded
brother, strange and unpredictable. In a traditional family the full burden of his care fell on her mother, who bore the brunt of raising a child who would never become independent at bathing or feeding or toileting
himself. She wished her mother would confront the challenge of having a retarded child much as Dylan Thomas would have his father face death:
And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray. Do not go gentle into that good night.
Rage, rage against the dying of the light.
But her mother didn't rage and fight to live as normal a life as she could; each day she just quietly did what she knew she had to do. But then, it was easier to be a sister of a severelyretarded child than his mother. The idea of having so helpless a child herself was so repugnant, she wouldn't let herself even imagine what it could feel like.
She had read Pearl S. Buck's book about her retarded
daughter, Josh Greenfeld's journals about life with his retarded son; had read of the anguish felt by those burdened with the total responsibility of such children. "The only way I can keep my own head," Josh Greenfeld wrote, "is to regard him as a pet. Because if I regard
him as anything else I will destroy myself. He is my luxury, my whim, my hobby. He is not my son. He is my pet." She loved Greenfeld's brutal honesty; it helped her to accept her own ambivalent feelings: to love her brother and want to kiss the baby softness of his skin, yet to want to run away from the whole family too.
She watched her brother's feelings change so rapidly:
one minute crying, the next laughing; maybe that's what
we're all really like underneath our social veneers, she thought, a kaleidoscope of rapidly changing feelings; maybe consistency was a socially fabricated myth. It was okay, she decided, to feel what she really felt.
But if life with a severely retarded child was physically and emotionally taxing, dealing with his schools was worse. It wasn't until he was eight that he started school, not public school, but a private day school for retarded children. It felt good to see him walking each morning to get on the bus, good that he had a place to go each day. A social worker came to the house; label the furniture, she instructed, it will help the child learn to read.
Her parents were soon disillusioned with the day school her brother attended. They use the same water to brush all the children's teeth, she heard her mother say after visiting the school; the floors are dirty; while I was there a man sat on his lap to make him stay in his seat. She felt hurt to see her mother so upset.
But there was nothing the family could do. If.you leave
him home, the Superintendent of the district said, when her mother tried to get him to take her son into the public school, he'll become a vegetable.
So her mother sent him off to the day school for four years.
When the site of the day school was ·switched to
a different city, it took her brother forty minutes each morning to get to school. It bothered her mother to see her son along with blind children, crippled children, hard-of-hearing children ride so long to get to school each day, to see some fall over as the bus pulled away, children unable to help themselves or each other pull up in their seats. Although her mother had heard the day school program was getting better, she still had her doubts, but there were no alternatives.
Back at home, it was one step forward, one step
backward. He learned to turn on the faucet of the sink by himself, but he started making noises at night, keeping the family awake. He helped himself more in getting out of the tub, he was less restless when they took him out in the car, more observant. And they
were finally told he would be allowed to go to the public
There was a program for trainable retarded children.
To attend it, he had to be toilet trained. Although her brother really had his family trained to take him to the bathroom periodically to keep hi:n dry, though he
didn't really meet the criteria, the public school agreed to let him attend. Even if it was a trial placement,
her parents were happy. He would have certified teachers now; her mother was sure the public school would have speech teachers, even janitors to keep the school clean.
And though his progress was slow, he kept on learning: to T.-,alk up and down stairs without holding hands, to take delight in his toys, the sound, the movement of a toy train, cars with sirens and flashing lights, to pull the string on a talking doll. Now he sat calmly at the table when the family had company. He was more manageable when they took him visiting.
But the public school was not pleased with his progress. The school psychologist recommended that his teachers use behavior modification, a method of learning
that had been successful in teaching the severely and profoundly retarded basic skills. But his teachers knew little
about it. He is unresponsive to my directions, his teacher complained; he's disrupting the other children. We don't think he can profit from our instruction they told his parents. We're recommending he be sent back to the private day school.
Her parents were angry. They were the public school; they had classes for the retarded. They wanted their son in a school with certified teachers, a school their tax dollars helped to keep running efficiently, controllably. She wrote a letter to the principal for her parents, asking that her brother be allowed to stay in the public school, explaining why they wanted this for their youngest boy-child. The school decided he could stay, but only for a half day. So for two years he went to school mornings only. But the tasks they gave him in school were often too hard for him. His sister visited his classroom and saw his teacher stand in front of the clqss, explaining to one of her students how you use a voting machine, as the rest of the class of trainable retarded children looked on silently. Because of the inappropriate school environment, because he was
often sick with colds, because he banged his head when he was sick or frustrated, her mother kept him home much of the time.
Then, one day, when the house stood in disarray, furniture moved in the middle of the floor, painters all over the place, giving the walls of the house a new coat of paint, he started banging his head. Since
he was a small child he had sporatically hit his own head with his fist or slammed it against a wall or floor. But this time he didn't stop. ·The family took turns holding his hands, trying to keep hi from hurting himself, but as soon as they let his hands
go he would do it again. All day they tried to restrain
him. They tried tying his hands in an attempt to keep him from hurting himself more than he had. Late one afternoon his sister left the house; there had to
be something, she thought: maybe a medical supply store had a helmet for retarded children; maybe other children did this too. The medical supply store told her about a doctor's son who did the same thing; he had gotten his retarded son a football helmet. She went to a sporting goods store. There were all sorts of sizes - small, medium, large. She tried one on herself; his head
was about the same size as hers. It fit; so she bought it.
It sort of worked. He couldn't hit himself, although he tried to plunge his fist up under the guard into his chin. But it wasn't the solution. He had to be hospitalized; his doctor prescribed tranquilizers. When her parents came home from the hospital they were
content that at least he had stopped hitting himself. His face looked like the face of a boxer who just stepped out of the ring. I asked the nurse if they had taken him to the bathroom, her mother said. The nurse said
he didn't ask to go; she didn't realize he couldn't
talk. It hurt the whole family to have a child that nobody understood.
His sister had become a teacher of normal children.
She was going to graduate school at night to get her Master's Degree when her brother was hospitalized. To try to understand her brother better, she decided to get her degree in teaching the mentally retarded. In her first course in the program she sat down with her textbook and read about the causes of mental retardation, different concepts of intelligence, classification, and then finally reached the section she was most interested in: the section explaining the characteristics of the child; she read about speech and communication in the mildly and moderately retarded, about their social interaction, their self-care and academic abilities, their motor skills and vocational adjustment; then she reached the part of
the textbook she hoped would tell her about her brother, the part that dealt with the severely retarded. The first sentence in that section said, "We have defined severely retarded children as those who require institutional
or some other type of continued custodial care." She read about the physical characteristics of the severely and profoundly retarded, but there was nothing more, no discussion of how to teach them self-care skills or motor skills or social skills or skills to help develop their minds. The opening words of the section reverberated through her ind - these children will require institutional care. She began to understand why her family never found a program that met her brother's needs. Damn it, she thought; it's a self-fulfilling prophesy.
Her other courses were like the first, geared to the education of the mildly and moderately retarded. So this was why his teachers didn't understand him, rejected him, wanted him out of their classrooms. Her
family had thought that because they were teachers of the retarded they would understand him, know how to get through to him. But they didn't; because in teacher
training colleges, teachers of the retarded were learning - these children will usually be found in institution.s
She remembered a professor in one of her courses who stood before the class and said: the mildly retarded have an IQ range of 66-80, the moderately retarded, 50-65, the severely retarded 30-49, below that they are vegetables - no hope. And he was training future teachers of the retarded.
What she learned was that in the early seventies methods used to reach the severely and profoundly retarded were just starting to be popularly reported in educational journals. A teacher getting her Master's Degree in the field during that time or before could graduate from college learning next to nothing about how to educate the severely and profoundly retarded in the classroom. So his sister geared all her reports and papers to learning more about them. She
read how even medical schools were only recently giving attention to the problem of mental retardation.
She took an'in dependent study in which she collected
ideas for a curriculum for the severely and profoundly retarded.
For one course she had to visit an institution.
It was the only day in her life she got so upset she couldn't eat. She walked into a room as big as a gym where retarded men sat lining the walls, sat, doing nothing. When her class entered the room
the men encircled their visitors, some talking,
some shaking hands with her classmates. She walked down a long narrow hall, past a room filled with lockers,
past a room lined with toilets to another very large
room filled with about fifty beds. Two men were still lying in those beds; one was a good looking man in his twenties with red hair. Because they were not feeling well, both men remained in bed. She looked at them, alone, in this big room, at a fly that sat on the nose of the good looking man with red hair, at how he didn't even try to knock it off.
The class went on to another part of the institution,
another large room filled with beds, beds with frail adults whose twisted bodies were dressed in white gowns.
She past crib after crib with babies in them; some were wet, others soiled. And she remembered what she had learned in her child psychology courses, how babies needed to be cuddled and hugged and stimulated to grow normally, as she walked by all these cribs with babies lying alone.
The class was guided in its tour by an administrator of the institution, a man she respected for what he tried to do, who sat with her in her graduate class, who explained how when he had first come here, the adults in this room stayed on their backs all day in bed with nothing to look at but the white ceiling. He started, in good weather, to have their beds taken outside so they could get fresh air. As she drove home in her car with a friend, the friend commented how good it felt to
be able to walk out of that place. She felt that way too.
After reading so many journals in graduate school, she was beginning to understand her brother better, beginning to wonder how much of his behavior was due to his retardation, how much due to lack of appropriate stimulation. The problem, she remembered a woman
professor saying, is that you think of yourselves as special education teachers, when you should really think of yourselves, be thought of, as - just teachers. She
knew what the professor meant: retarded children are really just children, much more like other children than different from them. Like her brother they were slow, sometimes painfully slow, but even in their most bizarre behavior they were like their normal peers in
their development. A small percentage of normal children even bang their heads, she read, in the last half of the first year of life, but they quickly grow out of that behavior; whereas her brother might never reach the mental age of 38 months when headbanging normally sto,s.
But in the journals she read of successful methods that were being used to stop retarded children from hurting themselves. She read how children banged their
heads to express anger or frustration or fatigue, to get attention, to provide compensatory stimulation in otherwise unstimulating lives, how this behavior stopped when they were given developmentally appropriate tasks. She read of ways to teach language to nonverbal children, ways to teach self-help skills and social skills to them. She found out her brother's education should focus on sensory-motor training to help his mind to develop, to make him better able to act on his environment.
But many teachers didn't read the journals, weren't interested in searching out the new textbooks that
had begun to outline educational programs for the severely and profoundly retarded. Some teachers, speiial education teachers, didn't care. His sister was a teacher herself, yet even though she enjoyed the security of tenure, respected it as a means to keep school districts from replacing teachers with years of experience with younger teachers whose salaries ',vould be less - she saw its other side: she hated how it protected incompetence. Only
when parents had free choice, she thought, through a voucher system, to put their children in schools with teachers that wanted to meet their needs and knew how to do it or were willing to learn, would they be the frustration her parents, her brother had known.
It seemed insane to her that institutions were supported, funded, whether they met the needs of
the people they were supposed to serve or not, that teachers were paid whether they met the needs of the children
in their classrooms or not; sometimes the whole educational system looked to her like a horse galloping wildly
without a rider in the saddle to guide it.
She could never understand why the state, which
had given her so much, even a scholarship to pay for her college education, gave her brother so little. About
this time she learned about the Education For All Handicapped
Act. It seemed so perfect; it guaranteed every handicapped child an individualized education program to meet his needs; its require.ments made it almost impossible for any child not to be given the education he needed. Or so she thought; her optimism was short-lived. Her brother
was going to school full-time now. He had many teachers
through the years. peace for a while.
With one teacher, the family found He was new and young, and for the
first time her family got positive messages from the school: your son is making good progress; he throws and catches a ball; he sits quietly in a chair and he responds when I make requests of him. Her mother watched as the aide in the classroom took her son by the arm and helped him participate in field day. For a
while her family's life seemed almost normal. But there were new classes, more teachers who complained he didn't fit into their programs. The law meant nothing. The horse ran wildly wherever it pleased.
Finally a special class for the severely and profoundly retarded was started in the public school her,,-brother attended. He was two years away from graduation, reaching the age when his school days would end. The teacher hired for his class had a severely retarded sister; finally the family found someone who understood. They watched this new teacher with amazement; she conformed to the spirit as well
as the letter of the law: each month she set objectives, this month working to get him to walk halfway across the room without sitting, to sit at a table with
other children, to play with toys, play games. Next she would work at helping him :to dress himself, devising a way to get him to go into the bathroom without being taken in. He sat on a log today when we went
for a walk outside, she wrote to the family, and played with the dirt and felt it in his hands. The aide
in the class was a big-hearted person with a sense of humor that made the classroom a happy place of laughter and enthusiasm. His sister went to his classroom and saw her brother laughing, in a setting she never dreamed could have existed for him.
Over the years her ideas about what she wanted for
her brother, thought he needed were changing. At
first she had ped he would get a teacher aware of behavior
modification techniques, one who understood and
accepted his developmental level and the activities that would take him a step higher. But now she realized that something a ?rofessor had said in the first class on mental retardation she ever took was true - the most important thing, he had said, to be a good teacher, is to love your students. It sounded silly, impossible
to her then, but watch ing the love, the respect her brother's teacher and aide showed the children in his new classroom made her think otherwise.
She knew her brother would mentally always be like a small child, that next year her family would face the new challenge of coping with him as an adult, but books she had read, growing up with a retarded brother, taught her to stop expecting a logical, linear world of easy answers. While writing this story she met the mother of a retarded child loaded down with books,
in the library, rushing off to a college classroom. The mother was becoming a social worker to help other mothers with p oblems like hers. People that care, that understood, she thought as she was driving home, would make it different.
6 Cak Street
Newburgh, New York 12550
How We Used To Treat The Mentally Handicapped in America
I would be in favor of reparations if All the people wronged by society were given reparations. It's called equal protection of the laws.
Equal Protection of the law - applies to Profoundly Mentally Handicapped, too. It even applies to ordinary citizens - Gang Stalked by Police, Firemen, Ambulance Drivers, Security Guards, Neighborhood Watch Groups/the REDS - For 15 Years.
Senator Lee: If the FBI can unfairly target a presidential campaign, imagine what it can do to regular Americans. Senator Durbin: To Attorney General under Bush, Michael Mukasey - the authority you enabled could result in the FBI conducting a "long-term physical surveillance of an innocent American citizen".