Killing the Handicapped:
Is It Discrimination?

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A burden

His parents felt he was too much of a burden. He was mentally retarded, and they just couldn't deal with him. Perhaps it was the embarassment of having an imperfect child, a child who would never be an honor student, would never become a doctor or a lawyer or some such prestigious profession to make his parents proud. Or perhaps it was simply all the extra work that taking care of a mentally handicapped child must mean. No doubt extra financial expense would be involved.

So they decided to kill him. State officials found out just in time. They asked a judge for a court order to take custody away from the parents so that the poor boy's life would be saved.

The judge said no. The next day, the boy was dead.

Why did the judge refuse? Was he not convinced that the child was really in danger? A tragic miscalculation? No, the parents made no secret of the fact that their intent was to kill their child. If you strip away all the complexities, the courts ruled that parents have a legal right to deliberately cause their children's death provided that two conditions are met: 1. The child must be a newborn baby; and 2. The child must be handicapped.

This particular case happened in Bloomington, Indiana in 1982. The parents' names were kept secret in the legal proceedings. If they ever gave their baby a name, it was never known either, so he was called simply "Baby Doe" or "The Bloomington Baby". He was born with Down's syndrome, which usually results in mental retardation; and an esophogal atresia, a medical problem which makes it impossible to digest food. With modern medical technology this condition can be corrected with relatively simple surgery. But the parents refused to let the operation be done, condemning their child to death by starvation.

Death as a form of discrimination

Officials at the Department of Health and Human Services were shocked that such a thing could happen. Surely deliberately refusing life-saving surgery for your child with the deliberate intention of causing his death was child endangerment, if not actual abuse! Why hadn't the state done something? But the state had done nothing, indeed had very emphatically stated that it had no intention of doing anything, in this or in similar future cases. As the state would not enforce its own laws against child endangerment, they searched for a federal law that they could use.

One law quickly became apparent: Section 504 of the Rehabilitation Act of 1973, which says that "[n]o otherwise qualified handicapped individual ... shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance." No one had made any secret of the fact that the reason for denying Baby Doe a life-saving medical procedure had been solely because he was mentally retarded, that is, handicapped. As this happened at a federally-subsidized hospital, it certainly sounded like it violated this anti-discrimination law. So Health and Human Services sent a notice to hospitals explaining how they saw the law applying to such cases. They also told hospitals to post a notice about this, including a toll-free hotline that people could call to report possible violations.

A survivor

One of the first calls to come in on the hotline came from Long Island, New York. A little girl was born with spina bifida, a crippling defect in which the skin has not properly closed around the spine; and hydrocephalus, excess fluid around the brain, which can cause mental retardation. Her parents refused to consent to surgery, on advice of doctors who told them that without surgery she would quickly die.

She didn't. Seven years later, the Washington Post (April 2, 1992) interviewed her parents. They had named her Keri-Lynn. Her school classified her intelligence as "between low-normal and educable mentally retarded". She is confined to a wheelchair. But her mother describes her as a "very happy but also very stubborn child". She now says, "I couldn't be happier being the way she is, [though] it's a lot more work than a normal kid". (They also have a healthy 1-year-old.)

Medical experts say that if she had received prompt treatment, she probably would have done even better. Doctors can surgically close the skin over the spine, and can drain the extra fluid from the brain. Over 90% of spina bifida children who receive treatment survive. But Keri-Lynn was not given a "brain drain" for four months; and she was never given an operation to close her spine -- it closed by itself after six months.

How does her mother now explain their decision to let their daughter die? "We were doing what we felt was right for our daughter." But finally their hearts softened. "The first time I got a reaction smile out of her, we decided to take her home. Thank God it worked out the way it did."

But not before a long court battle against the HHS application of the law.

Reaction of the medical community

Hospitals and doctors came out forcefully against these rules. A survey of pediatricians asked if they would "acquiesce in parents' decision to refuse consent for surgery in a newborn with intestinal atresia if the infant also had Down's syndrome" (the condition of Baby Doe). 50% of pediatricians said yes; 77% of pediatric surgeons said yes. What if the child was not mentally retarded? Then only 3% of pediatricians and 8% of pediatric surgeons would not object to such a decision.

The Journal of the American Medical Association (April 11, 1986) printed an article blasting the HHS rules. Among their insightful conclusions: "The Baby Doe rule appears doomed by its nature to interfere with what it proposes to regulate." In other words, the rule is a bad idea because it might make a difference sometimes.

Their final conclusion was that "a federal proclamation would probably have sufficed, indicating (1) that the best interest of the child should always come first ... (2) that decision making should be fair (just) and consistent with the Constitution and its laws ... and (3) that any guidelines for decision making should not undermine widely held moral values of our society ...". One can only reply, Huh? The best interest of the child should come first, but we shouldn't say that killing a child might not be in his best interest? We should not have laws to protect people from being killed, but instead should encourage people to make decisions "consistent" with laws that you just said we should not have? We should tell people to respect the "moral values of society", but we can't say what those moral values are?

The Supreme Court speaks

Various organizations challenged the HHS rules in court, and in the end, the Supreme Court struck them down.

In one sense, their decision was correct by a meticulous reading of the law: They said that the law forbids discrimination against handicapped people by hospitals, but in these cases the hospitals were simply following the wishes of the parents, and nothing in the law forbids discrimination by parents. If the court had left the decision at that, it could, perhaps, have been read as one of those sad-but-true legal technicalites: We cannot prosecute this person because, even though what he has done is clearly terrible, he has not technically broken the law.

Even on these grounds, one could still question this decision. The law also forbids racial discrimination. Suppose a mixed-race couple declared that they wanted a white child, and because this child was born black, they wanted the hospital to starve him to death. Would the courts really say that because the parents made the original decision, that therefore the hospital should simply go along and starve the child as requested? Would they have no legal responsibility to do something?

But in any case, the court didn't stop there. They made it clear that their motive was not simply devotion to the letter of the law, but rather the fact that they believed that handicapped children are best disposed of to save inconvenience to all.

They stated that denial of medical care to a handicapped person cannot be considered discrimination if the reason for denial was related to the handicap. After all, they explain, the existence of a handicap might be relevant to medical decisions. But of course, if someone could prove that the handicap had nothing to do with the treatment decision, then clearly there was no discrimination. So they make the law meaningless. This is like saying that if an employer can prove that his decision not to hire you had nothing to do with your race, than of course he can't be charged with racial discrimination; but if you can prove that it was because of your race, then he need only say that he felt your race was relevant to his decision, and so it's not discrimination.

Perhaps the court's decision can best be understood by their description of parents who decide to deliberately let their children die to avoid the burden of caring for them: They describe them as "concerned and loving parents" who have "chosen one course of appropriate medical treatment over another".

In America today, our highest court refers to starving a baby to death as a form of "medical treatment".

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Posted 10 Sep 2000.

Copyright 1996 by Ohio Right to Life.
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