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THE CAT WITH MY foot on its tail shrieked suddenly, his vocal chords stretched out to their full length. I stepped back. Kathryn darted from across the room, picked the cat up and turned towards the door. One half of her attention was for the flea-bitten mutt-cat that she held in her arms to "comfort." The other half was for me. "Idiot," she said. "You hurt a kitties tail."
Ten years ago an especially long summer was ending. We hadn't gone visiting or to the shore because Mom had Kathryn, and babies cried a lot. Mom cried a lot too that summer, and we didn't really understand. One hot night Daddy came in and sat on my bed and talked a little. Finally I gave him the opening he needed. I wanted to take trombone lessons in school in September.
"Gee hon, I don't know if I'll have the money this year. You know I'm going to have three children to put through college."
I was good at playing games like that. "No Daddy," I said. "You have four. Me and Peter and Martha and Kathryn."
Daddy settled into the purpose of his visit. "No, hon, Kathryn's not going to be like other children."
THE MOTHER OF A friend of mine identifies each of her nine children by their "causes." "Well, the first three times I tried rhythm. My diaphragm slipped twice. For the next one, I think I missed a pill ..."
Mothers of mongoloid children, that is, children like Kathryn, can't really point to anything that caused the birth of this child. Medical science has so far only discovered a correlation between the age of the mother and the child's possession of the one extra chromosome that is characteristic of Mongolism: the older the mother is, the greater the chance of having a Mongoloid baby. So when a Mongoloid child is born, even the doctors do not really know what went wrong. They only know that that one little chromosome will make a Mongolian idiot out of a normal baby. They know it will give this infant bendy knees, slanted eyes, a slack jaw, a low IQ and a nebulous place in society.
When Kathryn was born, the doctor came to see my mother. He told her about Down's Syndrome and how it could not be cured. He felt that mothers should be told the facts and he didn't spare any.
"She will probably never have an IQ of more than 20. She will not be able to talk, or probably ever to walk. For all practical purposes she will be a vegetable. Mongoloids have a life expectancy of around five to ten years. I would advise you right now to put her in an institution and tell the other children that she has already died."
THERE ARE MANY ways that infanticide--the killing of less-than-perfect children--can be accomplished. Some are more socially acceptable than others. One simple way is institutionalization which is often recommended at the moment of birth. While not precisely infanticide, social "killing" of a defective infant by shutting him or her off from the world could not be more complete. In addition, given the poor quality of public institutions, the assumption is generally that the infant will die before attaining maturity.
Although public sentiment today seems to be moving toward the humanization of the institutionalizing process, technology seems to be veering in the opposite direction, toward a more dehumanizing goal. One thing that has emphatically not changed, however is professional attitudes towards retardation and especially towards Mongolism. And what this means is that Mongoloid children may be, in ever increasing numbers, the victims of a society that finds it easier to bury its problems than to deal with them.
One technological advance that affects the fate of Mongoloid children is the development of amniocentesis. This method of determining if a fetus has genetic defects by analyzing fluid drawn from the amniotic sac during pregnancy was developed during the early 1960s to detect blood type incompatability between the mother and her child.
Since then, doctors have found that with amniocentesis Mongolism can be detected in a fetus as early as the third month. With this knowledge, a doctor would be free (and legally justified) to advise the mother to abort. Since the incidence of Mongoloid children is higher in older women, some suggest that amniocentesis be routinely performed on pregnant women over 40. Others would like to see amniocentesis become a routine part of prenatal care for all women.
The only scientific problem with that idea at this point is a possible danger to the mother and to the fetus from the puncturing procedure. Undoubtedly, however, this procedure can be made as safe as the delivery of the baby.
The real problem is the chance for error that is inherent in amniocentesis. There is not only the chance that a normal fetus could possibly be incorrectly identified as being deformed, there is also a chance that doctors' and professionals' misconceptions about Mongolism may cause them to advise parents, wrongly, to destroy "the vegetable."
Since Mongoloids make up about 20 per cent of the retarded population, they are often used in case studies of medical ethics situations. Opponents of amniocentesis and subsequent abortion, and of mercy-killing after birth defend their positions on purely humanistic grounds. Normal or not, they say, "it"--the baby--is human and its life should be preserved.
On the other side of the issue are the doctors and scientists who say that the test is accurate enough and that the child's low IQ will make him or her a burden on the parents and on the society. Very often in actual cases the request for abortion or mercy-killing comes from the parents themselves. Nevertheless, the impetus comes from the medical profession.
The vocabulary used by doctors to describe Mongoloids is frightening. Just the word Mongoloid itself conjurs up a race--labelling this child as someone not just handicapped, but practically outside of our own familiar species. In the best pregnancy counselling offered, the parents are told that the child will need "love and affection," but will never be "like other children." At worst, we learn that this child will be a burden on society. It is obvious that there is a fear of this handicap--a fear over and above that of other handicaps. A child born blind or paraplegic will obviously be more of a burden to the parents than a normal child and will never be completely "like other children."
It has never been proved though, that a child with the one extra chromosome cannot, with good care and an education as good and thorough as that afforded normal children, develop into a happy and productive member of society. On the contrary, most evidence indicates that child who manages to sneak by the preconceptions, although not of "normal" intelligence is as sensitive, as creative and as loving, or more so, than his or her normal brothers and sisters.
KATHRYN HAS DEEP blue eyes and blond braids. She leaves out articles when she talks. She talks loud and fast. She is bossy.
A teacher took Kathryn down to the high school to illustrate a lecture on mental retardation. Kathryn pulled the teacher over into the corner and whispered in her ear.
"You tell them. I'm the teacher. Tell them." Then she moved to the front of the room. "Good morning boys and girls." She waited. "Good morning boys and girls." Nothing happened. "I said good morning boys and girls." Finally someone caught on.
"Good morning teacher," a boy said from the corner. He looked like a greaser, like a hood. His dark hair was slicked back and he was wearing Italian pointed shoes and a purple translucent shirt. Kathryn beamed.
"What's your name?" she asked him.
"Hi, Joseph, you're my friend," she finished them all.
"Okay boys and girls we'll sing a song. "The Lord said Noah, build me an arky arky. Lord said Noah, build me an arky arky...build it out of hickory barky barky..." The room was quiet and 40 pairs of eyes watched this 4'11" nine-year-old who wanted to lead a class of cool high school seniors in singing. Kathryn stopped waving her pencil and tapped her foot.
"You're not singing," She looked mildly reproving. "You--sing!" She pointed at another boy. He looked nervously around the room and began to squeak with her singing. "The animals they came on they came on by twoseys twoseys..." The rest of the class joined in. "El-e-phants and Kan-ga-rooseys rooseys, children of the Lord."
Someone had copied a textbook description of Kathryn's problem on the blackboard: Mongolism (Down's Syndrome)--Educable or Trainable. IQ range 20-60. Low perceptive abilities, low motor control." Kathryn spelled out her name in chalk below her definition.
When it was time to go, she turned and beamed at the class. "Bonjour, ca va, au 'voir." She spoiled the dramatic exit, though, when she poked her head back in the door and grinned and waved. "So long, Crabby," she said.
When she got home, she took off her pink pants suit and unbuckled her patent leather shoes. She put on a pair of cutoff jeans and a green shirt with an alligator on one pocket. She hung up the pants suit, but left the shoes and socks in the middle of the floor.
She crashed down the stairs. "Hey mum, I was teacher. Can I have money? Can Kara and I go to the store? I want bubblegum." My mother gave each of them a dime and they walked down the street to the little store. Hand-in-hand with the girl next door, the vegetable went to market.
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