It happened more than 10 years ago. I was pregnant with my third child and the controversy over Baby Doe was still swirling.
Baby Doe was a newborn boy who was born with Down Syndrome and a defect in his esophagus that needed surgical correction before he could drink from a bottle. Although this operation was routine for newborns with this problem, Baby Doe's parents refused it, and a court upheld their decision. Several parents came forward offering to adopt Baby Doe and even pay for the operation. They were rebuffed, and Baby Doe died six days later without being fed.
I was shocked. Why didn't the court or the law protect Baby Doe from such obvious discrimination? How could the parents' lawyer maintain that it was a "loving decision"? Did that mean that parents who make sure their disabled children receive life–saving treatment are unloving?
Four months later I gained a new understanding of the gravity of those questions when my daughter, Karen, was born with Down Syndrome and an even more serious condition than Baby Doe's: a life–threatening heart defect. I was stunned when Karen's doctor said that there was an operation available with an 80 to 90 percent success rate, but that he would support my husband and me "100 percent" even if we chose not to operate.
I was furious. As a nurse, I knew that such an operation would have been presented as a technological blessing, not an option, if my baby were not mentally retarded. I told the doctor that I resented such discrimination, that my daughter had rights of her own, and that if he was prejudiced against children with Down Syndrome, he could not touch her.
To the doctor's credit, he recognized his well–intentioned mistake and promised that he would do his absolute best for my daughter. And he did.
But it frightened me that there was such a biased attitude among even good, caring doctors. Could I really trust any of those health–care providers on whom my child and I depended? I came to realize that Baby Doe's parents "private" decision had an enormous impact on public policy and attitudes, leaving my baby at risk if I did not protect her.
Even though both Baby Doe and my Karen died several years ago (one by parental decree, one despite the best medical care), I found them often on my mind as I followed the Christine Busalacchi controversy. She, like Baby Doe and Karen, had mental disabilities, although at different points on the disability spectrum. Christine's father, like Baby Doe's parents, felt his child had no quality of life and went to court to prevent feeding. Mr. Busalacchi also "won" the right not by changing the law but by political and judicial aquiescense.
But the same question raised in the Baby Doe case must be raised again: Should parents have absolute power over their children's lives or do the state and society have an obligation to ensure that everyone, disabled or able–bodied, has a right to necessary care and treatment?
We have forgotten that, before the Baby Doe case, the answer used to be obvious.
Why do we view harm to children and the elderly as an issue that the state and society must address regardless of family involvement, while maintaining that no one may even question whether a father has a right to act on his opinion that his mentally disabled daughter would be better off dead? Are mentally disabled people any less vulnerable?
The Busalacchi controversy was not about making a medical decision: Christine was neither dying nor too sick to receive food. In fact, in 1991, she was able to take most of her food by mouth before her father insisted that only the feeding tube be used.
The controversy was not about the severity of disability: There are many people who cannot smile, eat, or laugh like Christine could (even as a so–called "reflex") who are currently receiving care and treatment. And despite the offensive and medically untestable label of "vegetative," a recent study showed that most of the families studied were unwilling to withdraw food and water.
No, the issue is really about equality. No one should be denied care or treatment required for others just because he or she has a mental disability.
But for now, the Missouri Supreme Court and the state administration have refused to act on cases such as Busalacchi's, allowing family choice to be the overriding issue. And, as I personally found out, it is not hard to find doctors or others who would be willing to concur with the family in death decisions.
It is families like mine who have tried to give their mentally disabled loved ones the best quality of life possible who must now watch sadly as the planned death of Christine Busalacchi is portrayed as a victory for family rights.
The disability rights movement has had great success in ensuring access to parking spots, public buildings and education for the disabled. It's a tragedy when the disabled cannot be ensured access to something as simple as food and water.