This is the Archive site for Firedoglake. To go to the main site please click on the following link

Wednesday, March 30, 2005

Why Does Looking At Terri Schiavo Make Us Uncomfortable?

While liberals across the country rub their hands gleefully at the thought that the GOP has finally overreached itself on the Schiavo issue, the Village Voice is speculating that the Republicans may go into spin mode and save their bacon yet -- by putting the fear into baby boomers about what fate lies before them when they reach old age. Will they simply be expected to die when they become old, disabled, expensive and inconvenient?

Will the public remember that when George Bush signed the 1999 Texas Futile Care Law that gave hospitals the right to remove life support if the patient could not pay and there was no hope of revival, regardless of the patient's family's wishes, it was because the state did not want to pick up the tab? Or that with each new federal budget that comes down the pike, Medicare funding gets slashed again and again? No, the GOP is hoping that all they will remember is the middle of the night grandstanding "for life" in the Schiavo case. They are hoping once again that emotion trumps logic.

Nonetheless, there is a conversation that needs to be taken up about disabled people and the role they play in society. Many disabled individuals were made keenly uncomfortable as the nation's gaze rested on tapes of Terri Schiavo in her hospital bed and overwhelmingly came together in the pronouncement that "I'd rather be dead." A telling article was sent to me by John Huffman, written by a Harvard student with cerebral palsy:
Our country has learned that we cannot judge people on the basis of minority status, but for some reason we have not erased our prejudice against disability. One insidious form of this bias is to distinguish cognitively disabled persons from persons whose disabilities are “just” physical. Cognitively disabled people are shown a manifest lack of respect in daily life, as well. This has gotten so perturbing to me that when I fly, I try to wear my Harvard t-shirt so I can “pass” as a person without cognitive disability...

The result of this disrespect is the devaluation of lives of people like Terri Schiavo. In the Schiavo case and others like it, non-disabled decision makers assert that the disabled person should die because he or she—ordinarily a person who had little or no experience with disability before acquiring one—“would not want to live like this.” In the Schiavo case, the family is forced to argue that Terri should be kept alive because she might “get better”—that is, might be able to regain or to communicate her cognitive processes. The mere assertion that disability (particularly cognitive disability, sometimes called “mental retardation”) is present seems to provide ample proof that death is desirable....

Not Dead Yet, an organization of persons with disabilities who oppose assisted suicide and euthanasia, maintains that the starvation and dehydration of Terri Schiavo will put the lives of thousands of severely disabled children and adults at risk. (The organization takes its name from the scene in Monty Python and the Holy Grail in which a plague victim not dying fast enough is hit over the head and carted away after repeatedly insisting he is not dead yet.)...

Besides being disabled, Schiavo and I have something important in common, that is, someone attempted to terminate my life by removing my endotracheal tube during resuscitation in my first hour of life. This was a quality-of-life decision: I was simply taking too long to breathe on my own, and the person who pulled the tube believed I would be severely disabled if I lived, since lack of oxygen causes cerebral palsy. (I was saved by my family doctor inserting another tube as quickly as possible.) The point of this is not that I ended up at Harvard and Schiavo did not, as some people would undoubtedly conclude. The point is that society already believes to some degree that it is acceptable to murder disabled people.
Now, I don't happen to think the Schiavo case is a particularly good example of where the line blurs. But I can certainly understand that someone who has undergone a life experience like this can look at the national gaze and see something more than altruism in people's desire to see Terri Schiavo pass on. And the question must certainly arise in the minds of all of us who struggle on a daily basis with the expenses of health care -- how do we as a nation plan to pay for a future where life is valued, and people do not feel compelled to "just die" because they feel they have become a burden, financial or otherwise?

I can't imagine looking toward the grandstanders in the GOP for relief on this issue, but stranger things have happened. As the Democrats stand by and gloat at the lousy public approval ratings for the GOP, they would do well to take a proactive stance and heed the words of Barney Frank (D-MA), who said last Sunday on ABC: "I think Congress needs to do more. Because I've spoken with a lot of disability groups who are concerned that, even where a choice is made to terminate life, it might be coerced by circumstances."

Update 3:53pm: Just to clarify -- I don't think Terri Schiavo is an appropriate poster girl for the rights of the disabled, and I think the decision of many disabled groups to hitch their wagon to this case, the GOP in general and Bill Tierney specifically is a hideous, hideous mistake. The picture of Stephen Hawking is provided as it relates to the author of the piece in the Harvard Crimson, and not Terri Schiavo herself. I bring the subject up apropos of the Schiavo case only because I don't think we should be letting the GOP get away with this new PR spin that "they care so very much." They don't. And they never will.

"Compassionate conservatism?" Bollocks.