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by Alan Toy


Terri Schiavo and the Disability Rights Movement


'Is this a disability rights case?' continued

Let's for a moment assume that Terri does actually have the kind of brain damage the experts say she does. Her doctor showed the judge MRIs that show she has a "black hole" of spinal fluid where her cortex was. He doesn't say what part of the cortex, which has many functions. But if true and borne out by x-rays the public has never been privy to, Terri will never have an independent conscious thought as long as she is kept alive. And she is being kept alive, by feeding tubes that go directly into her stomach. With damage to the cortex, she can't taste, or smell. Her sense of touch would be gone or seriously impaired. Her vision would be damaged, her hearing may be seriously impaired.

Communicating her wishes is out of the question for a couple of reasons: She can't talk and she can't wish. If you think she can be trained (like a dog, no, more like the way you'd try to train an animal with a very small brain function), then try this: Go to sleep tonight and try to train yourself to do something, like drink a glass of water. Make it easy. Put it right by your bed, or have someone actually put the water to your lips while you are sleeping and, without waking up, try to drink some.

The argument that Terri is a thinking, vital human, capable of making her own choices and living more or less independently is nothing more than a projection.

Oh, you may react some, or grunt, as Terri does. You probably wouldn't smile, with someone trying to pour water down your throat. And, I bet you'd bolt upright at some point. But that's where the similarity between you and Terri would end. For you'd be sitting up conscious, wondering what the hell was going on. Then you would then start making decisions about having water poured in you while you were sleeping, by going back to sleep and trying again, or by realizing how silly the exercise is and calling it off. Terri, on the other hand, goes on "sleeping." She reacts occasionally, her eyes are open. She may even contort her face into what others interpret as a smile. She looks awake. But she is still unconscious and most certainly always will be until brain transplants become part of our world. And even then, it wouldn't be Terri's brain anymore, would it?

The argument that Terri is a thinking, vital human, capable of making her own choices and living more or less independently is nothing more than a projection, the same as we project our complex thoughts and feelings onto animals. With five years of evidence to the contrary, it is beyond explanation how Terri's "supporters" can think she would ever have to grapple with "disability rights." Without the tube, she has no capacity whatsoever to do anything but die. With the tube, she has no capacity whatsoever to do anything but live, until other organs fail her. In either case, choice isn't an issue because she can't make choices, no matter how badly the disability community activists want to believe that she can.

So the issue of choice falls to others. This is a "right" usually granted to next of kin, which would be a spouse, if one exists. In this case, there is a spouse, as well as parents. And they disagree. This is where it gets muddy. I personally think her husband ought to the easy thing and give custody to the parents and then move on with his life, knowing he had done his best for Terri. But I don't blame him for trying stubbornly to do what Terri had said she wanted, while she could still make a choice, which is to remove life support. Whether she made those statements in the midst of watching an emotional television movie about right to die issues, or not, is irrelevant. It is the only record of her choice that we have to go by and we should respect that, knowing that she'll never again have a mind to change.

Some say her husband only wants the settlement money. Well, there is very little of that money money left. Terri is now being cared for at the public's expense. Others argue that since he lives with and has fathered children with another woman, he has given up his spousal rights. That's harder to respond to, but he is still her husband. He says he has never topped loving his wife or wanting to do what is best for her. Shouldn't we respect that too, instead of reading into it all kinds of sinister motives?

What about her parents? What are their motives? Why do they want Terri kept alive? Well, that's completely understandable too. She is their baby. A parent should never hasten the death of their child. But is this a disability rights case?

To me disability rights entail choices, self-direction, opportunities unfettered by discrimination and an equal place in society to give, as well as to take. Terri's case doesn't even come close to fitting into what I consider to be the disability rights movement. For starters she will never, can never, choose to do anything ever again in her life. Will she be ever moving anywhere, accessible or not? Will she be looking for an attendant who gives her great care? Will she be taking a bus, or learning to drive a van? Will she look for a job? Will she have a say in her survival benefits? Will she ever be voting? Will she ever have any communication whatever about her needs or desires? Again, the answer is "no."

So why is this so important to many of my friends and colleagues? I'm sure there will be lots of emotional responses, "slippery slope" types of reasons. But there is no factual or actual basis for their concern. Terri may be a person with a disability, but medical evidence shows she is not capable of a single self-directed thought or action. So it comes down to a question of life and death, not living with rights or with dignity. Where is the dignity in her current situation? How will that get any better when her parents die, if she should outlive them? And, wouldn't she already be long dead were it not for the medical science my community is so quick to condemn?

This is not Elizabeth Bouvia, who petitioned the courts for the right to starve herself, or even Tina Cartrette, another woman with cerebral palsy who was starved to death by her mother. "Saving" Terri Schiavo saves a body, not a person. And it sure doesn't help save or promote a beleaguered rights "movement" when our lines are so deeply drawn in the sand over cases like Terri's, which should be decided without us screaming that the sky is falling.

Now, I have to go back to work -- trying to make housing accessible and independent living resources available, so people can make some choices about the real disability rights issues in their lives.

Posted Nov. 16, 2003

Alan Toy, Project Director at the UCLA Advanced Policy Institute, in the School of Public Policy and Social Research, describes himself as "a lifelong activist/organizer in the disability community, working to increase individual and community-based empowerment."

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