Different River

”You can never step in the same river twice.” –Heraclitus

March 29, 2005

A future Harvard student who got his tube back

Filed under: — Different River @ 3:51 am

From The Crimson, Harvard University’s student paper, comes this fascinating story by Joe Ford, a Harvard student:

The case of Terri Schiavo has been framed by the media as the battle between the “right to die” and pro-life groups, with the latter often referred to as “right-wing Christians.” Little attention has been paid to the more than twenty major disability rights organizations firmly supporting Schiavo’s right to nutrition and hydration.

The reason for this public support of removal from ordinary sustenance, I believe, is not that most people understand or care about Terri Schiavo. Like many others with disabilities, I believe that the American public, to one degree or another, holds that disabled people are better off dead. To put it in a simpler way, many Americans are bigots. …

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. (I have severe cerebral palsy, the result of being deprived of oxygen at birth. While some people with cerebral palsy do have cognitive disability, my articulation difference and atypical muscle tone are automatically associated with cognitive disability in the minds of some people.)

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.

Essentially, then, we have arrived at the point where we starve people to death because he or she cannot communicate their experiences to us. What is this but sheer egotism? Regardless of one’s religious beliefs, this is obviously an attempt to play God.

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.

There is some more information about Joe Ford here.

2 Responses to “A future Harvard student who got his tube back”

  1. romy Says:

    i’d like to point out two inaccuracies here DR :
    1. it wasn’t a feeding tube, but an oxygen tube that student had removed then reinserted, and
    2. the link for more info on him doesn’t work (you seem to have left off the initial “ht” from “http”).

  2. Different River Says:

    Duly corrected. Thank you!

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