Seven years ago, the national press was much taken with a battle between the United States government and the parents of a New York infant invariably described by the press as severely handicapped or more often, severely deformed (as if she were the Elephant Man). She was a spina bifida child.
Spina bifida is a lesion in the spinal column. If it is not repaired through immediate surgery, there is a danger of infection that can lead to permanent brain damage. Usually accompanying spina bifida is an accumulation of spinal fluid in the brain. If a shunt is not inserted to drain the fluid, the pressure on the brain often leads to mental retardation.
The parents, however, chose to give the child -- known in the headlines as Baby Jane Doe -- only "conservative treatment." No surgery, and for a long time, no shunt. After all, as nearly all the reporters and nearly all the editorial writers assured their readers and viewers, it really did not matter what was done for Baby Jane Doe.
Either way, she wouldn't live all that long and as long as she did live, she would be profoundly retarded and in constant pain, would always be bedridden, would never be able to learn anything, and would never be able to recognize anyone, even her parents. In grim sum, her quality of life would be so low -- the press implied -- that her departure would be a blessing to her parents and, of course, to herself.
The only problem with this prognosis was that a number of leading pediatric neurologists -- based on what they knew of Baby Jane Doe's condition -- told me it wasn't true. I talked with, among others, Dr. David McLone, chief of neurosurgery at Children's Memorial Hospital in Chicago. He said that his extensive experience with spina bifida children gave him confidence that if she were treated at his hospital, she would grow up to have normal intelligence and would be walking, probably with some bracing.
Also much interested in the case was Dr. C. Everett Koop, then the Surgeon General -- and for many years before, one of the more renowned pediatric surgeons in the country. He wanted to see the hospital records, which had been sealed because of so much national attention to the case.
The federal government brought suit -- under Section 504 of the 1973 Rehabilitation Act -- to find out from the records whether Baby Jane Doe was being discriminated against because of her handicap. Section 504 says that where federal funds are involved, there can be no such discrimination. Therefore, said the government, handicapped infants -- like all other infants in the nursery -- must get appropriate medical treatment.
The legal team for the parents included the attorney general of New York as well as the New York Civil Liberties Union. They maintained that the privacy rights of the parents and of the infant must be protected at all costs against "Big Brother."
Supporting the government -- though there was little notice of these allies in the press -- were the American Coalition of Citizens with Disabilities, the Association for Persons with Severe Handicaps, the Disability Rights Education and Defense Fund and the Disability Rights Union.
Unlike many able-bodied Americans, the disabled know that treatment based on "quality of life" can strip you forever of all your civil liberties, and your life.
The government lost in the courts all the way. The privacy rights of the parents and the infant getting "conservative treatment" prevailed. The "intruders" were routed.
In the years since, it has been learned that the child's real first name (we've never known the last) is Keri-Lynn. And in a recent Newsday story by Kathleen Kerr, it turns out that Keri-Lynn is not in pain, that she laughs and plays with her parents and other children, and recognizes her parents with no trouble at all.
But she cannot walk. She attends special classes; her intelligence is considered between low-normal and educable.
What would have happened if the government and Dr. Koop had won in 1983 and Keri-Lynn had received what is called "aggressive treatment"? Kathleen Kerr of Newsday asked Dr. Koop. He said to her, as he has said to me, that if Keri-Lynn had been able to get full treatment through the anti-discrimination provisions of the federal Rehabilitation Act, "she would be in a considerably different condition today."
It never occurred to the American Civil Liberties Union, which was protecting the right of the parents to be the sole decision-makers in the case, that Keri-Lynn was not a fetus and had her own due process and equal protection rights under the Constitution. By their own principles, the civil libertarians were on the wrong side. Keri-Lynn was being discriminated against because she was handicapped. But the ACLU saw her, and still does, as being an extension of Roe v. Wade.