Dissenting View

Harriet McBryde Johnson had a a recent article in Slate discussing the Schiavo case. She makes ten points that she thinks are being obscured in the current emotional maelstrom surrounding the issue. I don’t want to respond to every single point, but I want to respond to some of her statements that caught my attention:
Ms. Schiavo is not dependent on life support. Her lungs, kidneys, heart and digestive systems work fine. Just as she uses a wheelchair for mobility, she uses a tube for eating and drinking. Feeding Ms. Schiavo is not difficult, painful or in any way heroic. That Ms. Schiavo eats through a tube should have nothing to do with whether she should live or die.
I’m not sure I get the distinction. I’ll use myself as an example, simply because it’s convenient. I use both a feeding tube and a ventilator. If either device were removed, I’d probably die. The feeding tube may not have as many flashing lights or buttons but that doesn’t make it any less critical to my survival. I agree that the fact she has a feeding tube isn’t determinative in Schiavo’s case, but it is an intervention on the same level as a dialysis machine or a ventilator.
There is a genuine dispute as to what Ms. Schiavo believed and expressed about life with severe disability before she herself became incapacitated; certainly, she never stated her preferences in an advance directive such as a living will. If we assume that she is aware and conscious, it is possible that, like most people who have lived with a severe disability for as long as she has, she has abandoned her preconceived fears of the life she is now living. We have no idea whether she wishes to be bound by things she might have said when she was living a very different life.
Most of the court-appointed physicians seem to agree that Schiavo is in a vegetative state. Putting that aside, I think it’s presumptuous for us to project our own views on living with a disability onto a woman we don’t personally know. Many people with acquired disabilities never completely accept their altered existence. It is true that Schiavo didn’t leave an advance directive; that’s why we look to the judgment of those who know the individual best; in this case, the husband.
In addition to the rights all people enjoy, Ms. Schiavo has a statutory right under the Americans With Disabilities Act not to be treated differently because of her disability. Obviously, Florida law would not allow a husband to kill a non-disabled wife by denying her nourishment. It is Ms. Schiavo’s disability that makes her killing different in the eyes of the Florida courts. Because the state is overtly drawing lines based on disability, it has the burden under the ADA of justifying those lines.
I’m curious to understand exactly how the ADA applies in this situation. It’s not the state that is withholding treatment from Schiavo, which pretty much rules out a Title II claim. Title I (dealing with employment) and Title III (addressing places of public accommodations) don’t apply. It is not solely her disability that distinguishes Schiavo’s case; it is the role of her husband as health care proxy to which so many people are objecting. In every state, marriage is defined as a bundle of rights and obligations. The ability to make health care decisions, barring an explicit directive to the contrary, is part of that bundle of rights. To turn the tables, do we take away that right from a spouse once the other spouse becomes disabled? Isn’t that a more obvious deprivation of rights–for both spouses?
The whole society has a stake in making sure state courts are not tainted by prejudices, myths, and unfounded fears�like the unthinking horror in mainstream society that transforms feeding tubes into fetish objects, emblematic of broader, deeper fears of disability that sometimes slide from fear to disgust and from disgust to hatred. While we should not assume that disability prejudice tainted the Florida courts, we cannot reasonably assume that it did not.
This one has me scratching my head. What makes federal courts any likelier to be enlightened on disability issues? The judges on federal courts are not endowed with Solomonic wisdom when they assume the bench. They are humans and they have their own prejudices and biases, for good or ill. To second-guess the decisions of state courts is tantamount to creating a grown-up table and kiddie table of jurisprudence.
I have a lot of respect for Ms. McBryde Johnson’s writing and advocacy work, but some of her statements on this issue need clarification. Maybe someone will send this blog entry to her and we can have a good ol’-fashioned debate. Like I’ve said before, the disability community is not of one mind on this, despite media portrayals to the contrary.