c. Pat Kenschaft
56 Gordonhurst Avenue, Upper Montclair, NJ 07043
One of the great blessings of my life has been
a brother whose IQ was diagnosed to be 50 when he was four years old and
I was seven. It was a "real" diagnosis in that he was clearly less
intelligent than the Downs syndrome children with whom he played.
In 1992, at the age of 49, he moved into his own apartment, where he has been living independently in a complex with "normal" people. He has a kind superintendent and easy access to nearby relatives. When he was forty, he obtained his driver's license, having failed the test four times when he was eighteen. Now he has owned and driven his own car for 16 years without a reportable accident. Sometimes he drives several hours to the home of our brother in another state.
He has paid income tax every year since he was nineteen. Then he became the first handicapped employee of a nearby pharmaceutical company, sorting and delivering mail in and from its large mail room. On the basis of his performance, the company hired other people with a variety of handicaps. After twenty years, he was laid off on the same day that the company dismissed a thousand other employees selected by a consulting firm. His attendance had been excellent and his performance reports at least adequate.
News quickly spread around town and within two weeks he was hired as a custodian by a nearby animal hospital. He successfully learned to use a variety of modern equipment during the months after he was hired without specially trained educators. Now is he routinely responsible alone for locking the hospital each night, having cleaned the busiest places after the other employees left. While supporting himself in his own apartment, he is now saving for a comfortable retirement at his own expense.
There were no special provisions for retarded children
when we were little. A mother of a handicapped child was expected
to sacrifice the rest of her life to the service of her child, implicitly
in penance for whatever sin had caused her to be inflicted with this burden.
My mother (Bertha
Francis Clark, 1913-1985) wrestled with the theological implications
of this and decided she simply couldn't believe she was guilty. She
couldn't imagine a God so cruel as to punish a child in this supremely
pervasive way for the sins of a parent. Thus she refused to take
personal responsibility for an accident of fate (or even the incompetence
of a doctor).
The family searched for a suitable school. There was nothing nearby, so my brother was placed in a residential school about a four hour drive from our home. My mother got a job to pay the bills. During the five years that my brother was away, our only red meat was hamburger. I wore only hand-me-down clothes except for a few wonderful dresses that my grandmother made. My parents repeatedly told me, and I believed them even at the time, that I was the lucky one to be able to think easily and to have their full attention. They often took me to the public library. They could afford little else for my entertainment, but they took me to anything that was free.
My brother's school was run by a middle-aged couple, their specially educated daughter in her twenties, their teen-aged son, and a collie. The collie supervised the children's swimming in the bay that adjoined the school property. There were forty retarded boys and girls in the school, who slept ten to a room in the large house that contained the school. My seven-year-old eyes popped at the sight of my brother's bedroom which contained five bunk beds. The oldest children were twelve when he moved in at the age of four, but he was the oldest when he left at the age of nine.
It is somewhat disconcerting to remember how glad I was to see him go. Distraught parents could not dispense discipline adequate for his frustration. Slapping and minor biting were my daily lot. Shortly before he left he bit a friend of mine on her arm to draw blood while she held him back from running in front of an oncoming train.
The first challenge of the school was to tame him. It wasn't easy. After our first visit, a month after he entered the school, he was so uncontrollably wild that they asked us not to return for three months. When we did, he was much better behaved. Ever since, he has been a very quiet person, hesitant about expressing feelings. His quietness is not something that correlates with intelligence, but perhaps reflects his being "abandoned" at a young age. It wasn't until after she died and I read her autobiography that I realized how guilty my mother felt about this, so I didn't comfort her. No child should be torn from his family like that, but even in retrospect, I can't see any better options open to my parents at that time. He needed an education beyond anything loving parents could provide, and there was none available near home.
For five years, we made a pilgrimage once a month to see him for a few hours, driving four hours on Saturday and often much more on Sunday afternoon when the traffic was heavier. We would stay in the homes of old friends ten or twenty miles from the school, sharing in the cooking and food expenses. It became much more challenging when another brother was born, and still more arduous when our sister was born the following year. Sunday morning my father and I would drive twenty or forty miles to retrieve my retarded brother, bring him back to the rest of the family at the friends' home and spend a few hours together. The entire family would drop him off on the way home.
He became increasingly friendly, and soon learned his colors, an achievement for which he drew abundant praise. He then learned to sing and we would sing together as a family. My mother's eyes would fill with an emotion that puzzled me then, but I understand now. He began to enjoy hiking with the family and playing with the new little ones. Eventually he learned his letters and began to understand what reading was. As he became one of the older children in the school, he took responsibility for cleaning, food preparation, and some child care. My mother was impressed that he could use a paring knife safely at the age of nine.
Meanwhile, shortly after he left home, my parents
saw a letter in a major state newspaper about a new "Parents' Group of
Retarded Children," later to become the "Association for Retarded Children,"
then the "Association for Retarded Citizens," and now simply, "ARC."
The first meeting was a turning point in their lives. Soon
our family conversation frequently focused on the new organization.
During the next few years Mother often visited families that had a retarded
child hidden in a back room. When she came back I was the one who
listened to the horror stories of how such children were ruining the lives
of so many families because they were accepted as emotional shame and unbearable
financial burdens. Mother told me often how much she believed this
was unfair and wrong, and how much she wanted to help these families.
Why should an individual family be forced to shoulder such tragedy alone, she wondered aloud? I listened, my pre-adolescent conscience much affected by these tragedies and my ego much bolstered by the confidence my mother displayed by confiding so much in me. Actually, she didn't have much choice; I was what was available. Long distance telephone calls to adult relatives would have been far too expensive. But those long conversations in my childhood gave us a bond that few mother-daughter pairs have been fortunate to share.
During the years when I was an "only child," (after my brother had left and before the other two were born), I read the series of autobiographical books by Laura Ingalls Wilder. Between two of the books Laura's sister Mary became blind. I was deeply distressed, and said to my mother, "Laura's mother said that now she had to see for two." (No doubt Laura's continuing descriptions to her sister of what she saw as a child facilitated her vivid writing as an adult.) My mother and I looked at each other for a long time, and then she verbalized what we were both thinking, "And you must think for two."
Mother became state publicity chair for the Parents' Group. The overriding goal was to pass state legislation that would require municipalities to educate all their children, no matter how handicapped. Mother wrote endless newspaper articles that Dad edited and she then telephoned in to newspapers. Our family was featured on a radio program, "The People Act."
When I was twelve years old, the Parents' Group's legislation, "the Beadleston Bills," were passed. It was the first of its type in the country to require that communities educate all children including the handicapped. Its immediate impact on me was that my brother would return home after five years and live with us again. Our town had to find appropriate classes for him nearby and pay the bills. The lifetime impact on me can't be stated briefly, as I have watched "special education" classes become accepted. My belief in one woman's ability to change the world is greater than most.
In early adolescence my brother began asking Mother about the difference between us. "Teach me to learn like Patty," he would beg her. "Why can't I learn like Patty?" "If the doctor hadn't made a mistake when I was being born, would I be as smart as Patty?" That one doctor had delivered several mentally retarded children to well educated parents facilitated the organization of an effective Parents Group. As they kept surfacing, I asked my parents why nobody made that doctor stop delivering babies. They told me anyone would be sued for libel who accused a doctor of doing what my brother's doctor had obviously done. This repeated conversation had a permanent effect on my attitude toward both doctors and lawyers. Years later I was one of the early pioneers in unmedicated childbirth, since I wanted to watch -- and dictate! -- my own obstetrician's every move.
The graded ungraded classes in a nearby municipality that my brother attended were excellent. He progressed well, and was allowed to stay in school for a year beyond his eighteenth birthday. Everyone, including him, agreed he was learning at such a gratifying rate that he should continue. The June after I graduated from Swarthmore College with a degree With Honors in mathematics, he told Mother he wanted to learn long division, even though his teachers thought it was too difficult for him. Together they spent much of the summer in the effort, and by September he could do long division.
When he was nineteen, he obtained a job delivering
newspapers in a large apartment complex in a nearby city. He had
to get up every morning at 3:00 AM for the morning shift, and the evening
shift ran though the family dinner hour. It was grueling, but a job.
After a few years, tenacious politicing by my mother resulted in his getting a job in the mail room of a large corporation within walking distance of my parents' home. Mail was delivered four times a day. He sorted it and then walked around delivering it. The hours were regular working hours and the pay much better than for delivering newspapers. It seemed wonderful.
Mother "did" his finances. She would sigh and say how easy it would be for a scoundrel to take everything from him. Many times she warned me that when the responsibility for him would be mine, I would have to be eternally alert to the threat of rogues. One clever way she devised of preventing future fraud was his lending money to his siblings as mortgages on their homes, which we would pay back over thirty years, so that during that time a considerable amount of his assets would be safe. Since he lived with his parents paying only a modest rent, couldn't drive, and was earning a blue-color wage, he saved money at a significant rate. When he was forty, he held the total mortgages on the middle-class homes of all three of his siblings. We were fortunate to obtain our mortgages at an incredibly low rate without bank investigations.
Mother and I both repeatedly told each other how much having him in our lives had enriched ours. We enjoyed our abilities as few around us seemed to. Just to be able to think is such a privilege! We also were grateful for our attitude toward potential social change; neither of us was nearly as complacent with the status quo as most people. The effect on our relationship with each other was also something we openly appreciated.
However, it was a terrible price he paid for our heightened awareness and sharing. The impact on Mother's religious contemplations was far-reaching. What kind of a God would condemn a person to an eternity of incapacity because of a doctor's mistake? On the other hand, if he were changed mentally after death, in what sense would that person be him? When asked in middle age, Mother would call herself a Buddhist (Buddhism being an atheistic religion), but she never sought out the company of other Buddhists. A wife's proper religious affiliation was with her husband's, and my father called himself a Christian. However, increasingly she "didn't have time" to go to church with him. When the minister arrived at his home two hours after my mother's death, the first thing my father said to him was, "I want no mention of any afterlife at her memorial service." With no evident sign of surprise, the minister nodded. He occupied a full-length service full of Biblical quotes with no mention of life after death. Fourteen years later, at my father's memorial service (without any instructions from the survivors), the same minister observed that Dad had never missed a church service any Sunday when he was home during the seven years that that minister had served his church, that Dad thought about religion, and that "his religion suited him."
When he was forty, my brother told Mother that he
wanted to get a driver's license. It was autumn. She gave him
a driver's manual, told him to study it during the winter and if he passed
the written test in March, she would pay for a professional driving school
to teach him how to drive. He kept the book beside his bed that winter,
apparently read it each evening, and passed the test at the first try in
March. Since he had failed repeatedly in his teens, Mother was surprised
that he passed immediately two decades later -- and not totally happy.
But she had made a promise and she kept it.
She telephoned a driving school, explained the situation, and they sent a teacher. In a reasonable amount of time he passed the road test. Then he told me (not Mother) that jobs were opening up for people who had driver's licenses to deliver mail from one corporation site to another, and that the pay was more than he was now getting. His eyes glowed with healthy human ambition. When I told them, my parents were startled, amused, and pleased. He was setting goals for himself and pursuing them, just like their other children.
However, less than a year later, before this dream was fulfilled, the company had a downturn, and hired consultants. One Friday it told all its employees to take home all their personal effects and to come to work on Monday prepared never to come back if they were one of those chosen to be laid off. My parents were beside themselves that weekend, but I thought they were silly; he earned very little and was an ideal employee.
I will always remember Mother's phone call the following Monday. "Pat, are you sitting down?" In the next two days Mother and I made up a resume and composed many letters. Thursday evening the clan gathered for one of Mother's twice-weekly dinners. She was very quiet, despite the presence of my brother, my sister, her husband and two children, my husband, and me. My two children were in college. The following day she had an emergency operation, after which she went onto a respirator. She never came off. Three and a half weeks later she was dead. It was exactly a month after my brother's lay-off, her heart broken. She never spoke to me after that Thursday evening dinner, but I did tell her that he had been offered another job. I wonder if she understood.
The job was at an animal hospital two miles from home, so it was a good thing my brother could drive. Gradually, he learned to handle the heavy equipment. Eventually, he was given responsibility for locking up the hospital each evening and setting the security system in place. The veterinarian who owned the hospital told one of my mother's best friends that fall that my brother was doing far more than they expected when they hired him. He enjoys their annual holiday parties very much, and obviously has a comfortable conversational friendship with the secretaries and other supporting staff.
Some years later Dad's health took an ominous turn,
emphasizing that his son would not be able to live with him forever.
We decided that his housemate's fate should be determined before the family
faced other drastic adjustments. I telephoned various organizations
serving handicapped people and discovered there was no help available to
people as well adapted as my brother. I received lavish compliments
about my family's responsible attitude, but was told that because we were
responsible, he was not eligible for amenities such as group housing.
I discussed the situation with many friends, and one told me about a nearby
apartment complex with a kind superintendent where friends of hers had
successfully found a home for their unusual son when they retired to Florida.
After visiting there, we put my brother's name on the waiting list.
About six months later, a nice efficiency apartment became available, and we put a down payment on it. We took almost a month after it became "ours" to visit it often and make preparations of various types. For example, my brother and I spent an evening shampooing the carpets. We gradually furnished it, as is our family's wont, with various donations from the extended family and house sales. After several weeks Dad said he thought it was time to move the bed and its inhabitant.
The day after my brother slept in the apartment alone we had one of our weekly clan gatherings. When we asked how things were going, the response indicated that a firm upper lip was being held. The following week, however, the reply was much cheerier.
Many people contribute to my brother's success, as
indeed is also true of my own and that of anyone else who has adapted satisfactorily
to our complex society. His employers and family keep in touch, always
with him in the loop. When the electricity in his apartment went
out, my brother telephoned Dad, who talked him through changing a fuse.
Each month he telephones my husband when his bank statement comes and together
they balance his books and pay bills. For each check he needs to
be told how to spell "hundred," and the meaning of this difficult word
is clearly not well understood. However, I felt reassured the day
he realized that he had been hoodwinked by a telephone salesperson and
immediately called our home to recount what he had done. My husband
sternly called the company and cancelled the contract, which is legally
possible in our state within three days of an impromptu, high-pressure
sale. Like many of us, he realized after the fact that he had been
He does need help of a type that I don't. After he had adjusted to sleeping in his apartment, I visited one afternoon to help him prepare his own breakfasts and sandwich lunches. (He buys dinners at the deli across the street from the animal hospital where he works into the evenings.) He had never been shopping for himself in a supermarket before, so that was an adventure. Before that expedition, I defrosted his refrigerator. While doing so, I notice an egg next to the sink.
"What is that doing there?" I asked.
"You said you were going to teach me to fry an egg, so I got an egg."
"How long has it been there?
"Only a few days."
We had told him that whenever a bill came in the
mail, he should telephone Dad or us for help, so when his first bill arrived,
he called Dad immediately.
"Well," said Dad, "I guess either I should come to your apartment or you should come here."
"Oh, I have to go there."
"You have the stamps."
People often ask me about his social life.
It is minimal. He comes to our weekly clan dinners, but always leaves
first, often significantly before anyone else. He seems to enjoy
the people with whom he works, and sometimes tells us about their problems
such as the secretaries' traumas with new computers. For many years
he drove twice a year several hours to our younger brother's home and enjoyed
his much younger children. After his car broke down on one such trips,
the trips stopped. But when we siblings go for a vacation together
at a resort about a two-hour drive away, he manages to find his way alone
and join us there.
His social skills have increased since he began living alone. When my daughter brought home a young man to meet the family, my brother reached out and did his part to make the visitor comfortable.
Before he could drive, he used to negotiate public transportation to visit museums and baseball games in a nearby city. However, that ended abruptly when a passerby demanded his wallet and relieved him of all his cash.
He used to attend regularly a church singles' group that our much younger sister belonged to when she was in college. She invited him to try it and took him along. For years after she was married and had moved onto other social settings, it was still a Sunday evening habit for him. A few months before Mother died he suddenly stopped attending. Despite her deep concern, he wouldn't tell her or anyone else why. After her death following his sudden lay-off, my husband, concerned that there be some stability in his life, inquired with all the leaders in the church group about what had happened but they were as mystified as the family. Indeed, they told my husband that they had repeatedly telephoned my brother to invite him back, but to no avail.
Eventually my father signed himself into a Continuing Care Community. At first my brother did not join us when we ate dinner in their lovely dining hall, but eventually he learned to make that half hour drive. The first time he was clearly uncomfortable with a sit-down dinner with waiters, but he learned to enjoy it.
Once as we were sitting in those elegant surroundings, he turned to me. "Do you know wht the rent is here?" I was startled, but then admitted that I helped Dad with paying his bills. "Do you think I could afford it some day?" I told him that my husband and I hope that some time the three of us will move together to such a place. He glowed. "I'm fifty-five. I still have ten years to save up. I'm going to try!"
Is he happy? Not as happy as I am, but few
people are. He isn't as happy as he seemed as a child; our younger
brother remembers lots of laughter and joking in their joint bedroom before
sleep during the years following his return home. But then, many
middle aged men aren't as bouncy as they were as pre-teens. He doesn't
seem nearly as miserable as many people I know.
He certainly is far better off than anyone predicted he could become when he was diagnosed. A friend of Mother's arranged for an in-depth analysis some miles away. Afterward, she was told to put him in an institution and throw away the key. On the way home, in those days before seat belts, he tried to strangle her while she was driving across a bridge. She considered driving off the edge and ending them both. Then she thought of her little girl, and drove safely home to me. I'm so glad! Both of them have been a loving and inspiring part of my life. As Mother and I used to say to each other, our lives have both been enormously enriched because of someone different in our family.