The Terri Schiavo Success Story

Austin, Texas

If it hadn’t been for that moment when the potassium imbalance brought about by her bulimia caused Terri’s heart to stop, she might have been the woman in the television ad I just watched, selling the latest weight-loss method. “I lost a hundred pounds,” declares the svelte looking woman on TV, “you too can lose weight and keep it off.”

If we had any amount of decency in our culture, weight-loss ads would have been hastily pulled off the air this week, as Terri Schiavo’s body died from lack of water.

There is much to be angry about the indignant, callous manner the right-wing has exploited the plight of this family. They have taken hypocrisy to new levels, and much ink has been spilt on that. But I am disappointed that the progressive community has not seized upon the publicity generated by this tragedy to do more on two very important moral issues.

One is that this is an opportunity to shout from many rooftops that the cause of her condition is bulimia, and that her plight was not so far removed from that of the typical woman trying to keep her weight at a level that is considered socially desirable but is, in fact, nearly impossible for most women without heroic measures, such as forcing yourself to throwing up your food, eating too little to nourish your body, or exercising obsessively.

Second, that there is genuine reason to “err on the side of life” — and that a system that gives a husband or a parent the right to terminate a person’s life based on the argument that “she wouldn’t want to live like that” is fraught with grave danger for the sick and the disabled. That’s why many in the disability-rights community cheered when Federal courts intervened, however hypocritical the source of that intervention might have been. Frankly, when someone is coming to yank your feeding tube, and you can’t speak, you take whatever help you can get.

Progressives should give be better allies to them. The current alignment means that many in the disability-rights community are forced to work with an outrageously-hypocritical right-wing political machine. As a case in point, Senator Tom Harkin of Iowa, a well-known advocate of disability-rights, chose to work with the Republicans in this case. This is no aberrant occurrence; many of the issues raised in the Schiavo case are of genuine concern to people with disabilities and chronic illnesses.

I personally know of one person who was thought to be a “vegetable” and abandoned in a corner, unable to communicate, who was, in fact, very much cognizant and, if anything, wickedly intelligent. The reason that he ended up in law school rather than in a hospice where he might well have been put to death because of “lack of quality of life” is a story of luck, perseverance and very good advocates — the kind of advocates that appear irrational, and looking for hope when there is none, until proven right.

About a week ago, I wrote on my blog that I found it hard to believe that her husband was oblivious to her bulimia, and that her parents were obviously in denial about it. ( Michael Schiavo knew “she had peculiar eating patterns.” She had lost more than a hundred pounds. She had stopped menstruating regularly. She was trying to survive on liquids. I got a lot of angry letters from people with eating disorders and their loved-ones about the secretive nature the illness. Terri’s condition, bulimia, brings about its own shame and secrecy. Many argued out that it was unfair to blame him for her actions, which she most likely kept secret.

Fair enough. Maybe Michael Schiavo could not see. Maybe neither he nor the rest of the family could recognize the signs. That simply highlights the urgency of talking about this subject. Terri was just 110 pounds when she collapsed, down from more than 200 in her high school years.

Most people’s first reaction to such a drastic weight-loss would be to congratulate the person. As Schiavo’s case illustrates, concern may be more appropriate. And her behavior was practically broadcasting that something was amiss. In his Larry King interview, Michael Schiavo said that “When I was with her, when we were together, Terri would eat and eat and eat” — yet she was able to maintain her weight-loss. Michael’s brother, Scott remembers noticing in family gathering that, “Terri was eating a huge plate of food, but she was thinner than ever.” How can you eat like that and still be so thin, he asked her. “She laughed,” recalls Scott, “and said she must just have a good metabolism.” It is not really possible for someone who has a propensity to gain weight, as Terri obviously did, to suddenly develop a “good metabolism.”

Although we don’t know, there might have been other typical signs of bulimia present in Terri. Bloodshot eyes, as the eye vessels burst during the forced throwing up. Chronic sore throats. Brittle nails. Dull hair. Rapid weight-shifts and a fluctuating weight. Frequently bruising. Menstrual irregularities. Smell of vomit in hair or hands. And, yes, cardiac arrest in A 26-year-old.

Frankly, it was no comfort to hear Michael Schiavo’s long-time lawyer, George Felos, declare that he’d never seen “such a look of peace and beauty upon her,” as Terri Schiavo was more than a week into her starvation. With this level perversity among Michael Schiavo’s team, one could not help but wish that Terri Schiavo had had independent protection. In fact, all these last two weeks, I have kept hearing many people, progressives among them, say “this is a private matter” and “government should stay out of this.”

This is very hard to understand. I keep wondering do these people really not understand how hostile and uncaring families can become when faced with a member who requires long-term care? One often hears of stories of remarkable heroism and perseverance from family members of the disabled and the chronically-ill. Outside of Planet Reader’s Digest, there are also other stories.

It is very human for loved ones of people who are seriously sick or disabled to project their own wishes unto the situation. From every reading of the story, it seems clear that Michael Schiavo first tried very hard to see if she could recover, realized that the chances were almost zero, and gave up and moved on with his life; forming a new family and having two kids. In such a situation, he would humanly be tempted to see Terri, who is obviously gone as a person, also be gone in body. There is a genuine conflict of interest here, regardless of the lack of interest in Terri Schiavo the Republican leadership has shown.

And the problem here is much bigger than Terri Schiavo. In her case, there has been enough controversy that we have a reasonable belief that she may have had no brain-activity. Her EEG was flat. Most of her brain had been replaced with fluid. Not all people whose quality of life may be deemed “too low to be worth living” have such clear medical diagnosis. Many in disability-rights community fear the consequences giving legal guardians such sweeping authority over life-and-death. The same issue comes up with the right to euthanasia. While I also believe in a person’s right to choose to die, I am truly scared of the consequences of this right if it is not coupled with very strong social support in favor of people who wish to live with their disability. To put it bluntly, if the right to assisted suicide is recognized, some of the time, it will bring down pressure on the disabled to commit suicide.

Just think about it: many families can have bitter, cruel fights over who will inherit that valuable piece of jewelry. Can you imagine the kind of bitterness and resentment that accumulates upon a severely-disabled family member whose care is incumbent upon the family? I have hard many stories of loving, caring families, but I have also heard many horror stories.

I have a friend who has very severe cerebral palsy caused by lack of oxygen to his brain during birth. For the first many years of his life, it was assumed he was almost like “a vegetable,” and he was parked in a corner of his family’s home. He could not talk, and he had almost no control over body. Yet, somehow, his mind persevered. He learned to read through the scattered observations he could make from his corner. Years later, he managed to trace out a few letters, enough to alert people to the fact that perhaps there was a person “in there.” With much intensive therapy, a means for him to communicate was devised — he can shape his mouth and throat to the words he is trying to vocalize and he makes up the kind of sounds that Terri’s parents got ridiculed for saying that their daughter was trying to make: saying “aaaaaah, whaaaaa” in order to start the sentence “I want to live.” I understand that, in a persistent vegetative state, those are sounds not words.

But that’s exactly how my friend speaks. Only trained-interpreters and his close friends can understand his words. The reaction to claims made by Terri’s parents scared me. It scares me to see the idea that someone could communicate in spite of severe speech impediments ridiculed. In fact, most people’s first reaction to hear my friend speak is that the interpreter is making it up — a conclusion soon overcome as one’s ear gets used to his articulations and one starts recognizing a few words here and there. (Besides, my friend’s vocabulary and range of knowledge is often much greater than that of his interpreters.)

To make it clear, I do support the right to die. Many of our methods of artificially extending life for people who are terminally ill and in pain are downright cruel and perverse. But there should be extraordinary pause in cases where the person is not terminally ill remember Terri Schiavo was not dying; the required assistance is minimal, a feeding-tube, not a respirator; and the wishes of the person is unclear.

Terri Schiavo’s situation has apparently prompted a boom in living-wills; I wish it would also prompt a will-to-live among all the women who may have skipped or thrown-up their breakfast, lunch, or dinner this very day. I also hope it prompts a deeper dialogue between progressives and the disability-rights community about the right to live with dignity, as well as about the right to die with dignity.

ZEYNEP TOUFE publishes the blog Under the Same Sun. She can be reached at: