Disabled people see the case as part of their fight for civil rights
Jane Barth, Staff Writer
NEW YORK — Last October, a baby girl was born at University Hospital in Stony Brook, Long Island. Baby Jane Doe, whose first name was recently revealed to be Keri Lynn, was born with spina bifida (exposed spinal cord). Her parents, in consultation with doc- tors, decided to forego surgery which might enable the child to live to 20 years. Without surgery, she is expected to live just two years.
The case came to national attention as a “right-to-life” lawyer tried unsuccessfully to obtain a court ruling ordering surgery f o r t h e baby. The right-wing “right-to-life” movement has rallied behind this stand, calling the parents’ decision “infanticide’ ‘ and linking it to its efforts to outlaw abortion.
Then the federal government intervened, attempting to obtain the baby’s medical records to determine whether the baby was a victim of discrimination, but was recently turned down in federal district court. Many liberals opposed government intervention in what they consider to be a personal decision by the parents. The ACLU says the government is violating the parents’ right to privacy, while a New York Times editorial criticized the Reagan Administration for using “big brother” tactics.
But much of the debate misses the mark. Both the right wing and liberals fail to address an essential point—the rights of the 36 million disabled people in the U.S., including the right of disabled babies to full medical treatment. The decision to withhold medical treatment from a disabled infant should not be seen as a personal decision for parents and doctors alone to make, because disabled infants have civil rights, too.
But disabled activists also call the Reagan Administration’s intervention hypocritical, since Reagan has slashed disabled benefits and undermined their rights. Due to the enormous costs which few parents can afford, the demand that the government pay for medical, rehabilitative and educational costs for disabled babies becomes literally a life or death issue.
Disabled infants should have the same access to medical treatment as the non-disabled. When treatment is withheld not for medical reasons, but because doctors and parents believe the disabled baby’s life is “not worth living,” that is discrimination.
Such discrimination is unlawful under Section 504 o f the 1978 Rehabilitation Act. Disabled activists and advocates struggled for many years to win this civil rights legislation, and now they are seeing these rights eroded under the guise of “medical judgment” and “patient-doctor confidentiality.”
UNITY spoke with several disabled activists who want Keri Lynn to receive surgery, but unanimously disagree with the “right-to-life” forces’ demand that everything possible be done to prolong the lives of babies born with fatal illnesses or extreme birth defects. Marilyn Saviola, executive director of the Center for Independence for the Disabled in New York, told UNITY, “I’m not for heroic efforts to prolong the life of a vegetable. But we are concerned that any handicapped infant has the right to treatment . . . like anybody else.”
But the disabled are not treated “like anybody else.” Since capitalism is only interested in those who can work, the physically and mentally disabled are shunted aside, denied adequate medical, social and educational aid. Society regards them with contempt (or fear) and considers them unable to function or learn.
Quality of life
Disabled people want to and can be socially productive. Many have struggled against great odds to overcome society’s unequal treatment and live up to their full potential. Many were falsely diagnosed by doctors as “vegetables” at birth.
Doctors’ bias is no small factor. In the original Baby Doe case, a boy was born with Down’s syndrome (mental retardation) and a malformed esophagus (pipe connecting the mouth to the stomach). Although the degree of retardation cannot be measured at birth, doctors and parents decided to withhold surgery on his esophagus, thus starving him to death. One doctor defended the Doe case claiming Down’s children cannot attain ” a minimally acceptable quality of life.”
In spina bifida cases like Keri Lynn’s, surgery can close the spinal cord, and cerebral fluid can be drained to relieve pressure on the brain. Children with spina bifida grow up with varying degrees of physical disability, often without mental retardation. Disabled activists are therefore wary of press reports that Keri Lynn’s case is hopeless, that she would be severely retarded, bedridden for life and in constant pain.
Medical opinion is divided, with some doctors recommending surgery, including one with experience in 300 spina bifida cases. But the parents are following the advice of a doctor who feels the baby is not worth saving.
Who should decide?
Disabled activists feel that parents are frequently unable to make a genuinely informed decision. Frieda Zames of Disabled in Action told UNITY, “Ultimately, the parents should decide. But the parents are not being informed.” Most of the parents are distressed and rely on doctors’ opinions, which are often biased.
Hitting at the core of the problem, Marilyn Saviola said, “Perhaps if society provided more resources and support for the disabled, the parents would not be so distressed in making these decisions.”
Most disabled activists favor some form of government procedures to protect disabled infants’ rights. Disabled in Action and five other disabled organizations filed a friend of the court brief on behalf of the government’s request to see Keri Lynn’s records. They wonder why all the hullabaloo by liberals about “gov- ernment interference,” since the government routinely asks to examine records when investigating cases of racial or sexual discrimination.
Rani Kronick, vice president of the disabled student organization at Harvard, stressed to UNITY, “These decisions (to withhold treatment — ed.) should not be regarded as individual decisions, because they affect a whole community of (dis- abled) people.”
Oppose Reagan’s attacks
Disabled in Action states in its newsletter, “It is ironic and even hypocritical that the political right, as exemplified by the Reagan Administration, supports Baby Doe’s right to live, (yet) . . . has drastically cut funding for essential services for disabled people in health care, education, housing, transportation, civil rights, etc.” The right-to-lifers are just as hypocritical, since they are not interested in expanding services and rights for the disabled. In fact, they push an “anti-life” agenda of more nuclear arms, more death penalty executions and social service cutbacks.
Disabled activists are distancing themselves from the right, yet cannot go along with the liberal alternative which concludes they might be “better off” dead. Hopefully, out of the Keri Lynn case can come a stronger movement for civil rights, government medical funding, social services and dignity for all the disabled people in the U.S.