In October, 2003, I ran across a story while browsing CNN. A judge was to decide whether to allow the removal of Terri Schiavo's feeding tube.
My attention captured, I began reading more about the case. Terri was not on a respirator. She simply received her nutrition through a tube instead of by mouth. She was said to be in a "persistent vegetative state," but this evidence has been disputed by several doctors. In fact, research exists demonstrating that PVS is misdiagnosed in as many as 30 percent of cases!
Video exists showing that Terri is responsive. It isn't just a speculation. The video is available online at http://www.terrisfight.org by clicking on "downloads."
The audio of Terri communicating with her father reminds me of interactions I had with my grandmother during her final weeks of life. Her vocalizations are not normal or intelligible, but they are very emotional.
I am appalled reading about Michael Schiavo's plans to continue his battle to kill Terri. I am even more appalled by George Philos' talk about his "deeply loving her." Michael Schiavo has a girlfriend and a child. Does he love the girlfriend or Terri? I wonder if he would be willing to endure 14 days without food or drink in order to experience the dignity he thinks Terri will experience when she dies. Perhaps he thinks she can't really feel it--CNN states that on day 1 of the removal of the feeding tube, "Patients who do not have mental cognition to have a sense of thirst or hunger will not be uncomfortable." Yet even a newborn baby will cry when she is hungry!
It's easy to think things like this when one assumes that a person is not conscious. In fact, there was a time when babies were denied anesthesia during major surgery because doctors assumed they could not feel pain. Pain management is now a regular part of the care of premature infants because failure to provide it is considered cruel. In fact, animals are expected to receive better care than Terri is currently receiving. Starving an animal would be grounds for accusation of cruelty to animals.
Just what is a persistent vegetative state? Terri is not comatose. She is severely physically and neurologically disabled. Professionals claim that she is cognitively disabled as well. How are we to know this if she cannot communicate? We don't know what she's thinking. The same used to be assumed of people with severe cerebral palsy. It's amazing what we learn when those people are given the tools and opportunity to communicate!
Most people quickly say that they would not want to live "like that." In fact, Terri's husband, Michael Schiavo, claims that she once told him she wouldn't. Despite the fact that Terri did not have a living will, Michael uses this claim to justify having her feeding tube removed. Under Florida law, a feeding tube is classified as a type of "life support." Yet there are people in this world who are walking around doing everyday activities, whose primary source of nutrition is a feeding tube! What is the difference between them and Terri? Only the fact that Terri can't communicate and is at someone else's mercy. Why not just give her a lethal injection? That's the dignified, quiet, peaceful way to die! But that would make a person physically responsible for her death--she would be murdered instead of "allowed to die." What a nice, soft way to absolve ourselves of the responsibility for starving a person, something that would be considered abusive if a parent did it to their child. Why is it ok? Perhaps Terri would not want to live "like that..." Would she have wanted to die like this? I wouldn't. ... Would you?
The line between "life support" and alternative means of nourishment is too thin. Disconnecting a respirator when the person has no brain activity makes sense. Disconnecting a premature infant from machines when the infant continues to require extreme measures and resuscitation over and over makes sense. Starving a person because she cannot eat normally does not make sense. This case is not about "do not resuscitate" orders. This case is about killing a human being who cannot speak for herself and justifying the act by claiming she has no quality of life.
People often talk abstractly about "quality of life." They may think they understand the concept because they live with or are friends with someone who has a disability. But how accurate are these assumptions? The only evidence of "quality of life" is the healthy person's perception and interpretation of the disabled person's actions. "Quality of life" is a convenient weapon for people who are healthy and who fear disability or who feel burdened by the responsibility of caring for a family member with a disability.
What is the definition of quality of life? George Philos has been widely quoted as saying: "The litmos test is whether a person can bring a spoon to his mouth." What does this mean? It certainly isn't a statement about Terri! It's a statement about every person in this country who requires intravenous feeding, be it temporary or permanent. I thank God that I don't require it; I'm offended enough by the statement as it is. What comes next? Will the litmos test change and become whether a person is able to walk down the street without asking what the name of the upcoming street is? If so, I guess I as a blind person could legally be killed by anyone who claims I wouldn't want to live "like that." Thank God I can speak for myself! I know people who claim they would kill themselves if they ever became blind. Shall we kill them when they are old and start to lose their sight because of macular degeneration? Shall I be killed because I live with the blindness that they fear?
When I was in college, I lived for a time in an apartment complex for senior citizens and people with various disabilities. Many of the residents were quadriplegic and could not feed themselves. Fortunately, they had received rehabilitation and were able to swallow. But they required someone to come and feed them physically. Some were able to talk. Others were able only to grunt. What is the real difference between them and Terri Schiavo? Only that they were provided appropriate services and treated as valuable human beings.
This debate isn't about the "right to die." This isn't about Terri's rights. It's about whether someone else should have the right to destroy her life with no written record of her wishes. It frightens me. What kind of decisions will people make about the value of my life if I ever become unable to speak or communicate? How accurate are assumptions about quality of life for people with disabilities, especially when therapies have been withheld because a person who wants to kill in order that he might be able to move on with his own life and avoid the painful consequences of marriage vows can find "professionals" who will declare his wife in a persistent vegetative state when she is not?
Our country's Declaration of Independence claims that all men are created equal and have the right of "life, liberty, and the pursuit of happiness." This tells me a number of things:
Isn't the "right to die" a bit strange in comparison to this document? Who but healthy people afraid of disability initiated this movement? Saying, "I wouldn't want to live like that," is very easy when we have only our fear of "that" as a guide. When we become "like that," our perspective can change dramatically. I know... I've been there. I once was a healthy child who had a small amount of usable vision. I am now an adult with chronic pain, neurological symptoms that make travelling alone or enjoying some of the things I love difficult, chronic respiratory illness, and so little vision that I cannot see colors on most days. My quality of life has not decreased. I have simply found that I enjoy things differently and I enjoy some different things. I enjoy my life, and I treasure every opportunity to love and to be loved, whether I show it by shouting out and running to hug my family and friends or by squeezing their hands while I'm in the emergency room having that "breathing treatment."
I once feared living in the condition that I am now in. I feared that if I lost my remaining sight, I might become withdrawn and socially inept. Looking back, I see how irrational that fear is! I am still myself. The things that truly make me who I am have never changed--and neither have the things that make Terri Schiavo who she is. But she is now expendable because she feared disability.
Every person with a traumatic brain injury is a person with a past and a soul and a heart. Even looking at Terri Schiavo's web site, ignoring this fact is still easy. It isn't so easy looking at Mandy Bradshaw's site. When I visited the site and heard the recording of her singing "My Life is in Your Hands," I realized how serious these debates are. Mandy cannot sing now. She cannot speak up and make her feelings known. But she is still Mandy. She still loves life. And Terri is still Terri ... and she needs my help--and your help--to cling to life.
There is a reason why people live for ten minutes without air and two weeks without food and water. We were made to cling to life! How can we justify taking life using a statement made when the person had no experience or understanding of what living with disability is really like? What will the "right to die" advocates advocate next? The "right to die" is already becoming the "right to kill and call it merciful" as long as the person cannot physically protest. Will it become legal for someone to come up behind me and shoot me because he believes that my quality of life is too low? Will it become legal for a doctor to inject me with a lethal substance whether I want to live or not? Perhaps these thoughts sound paranoid; but the quality of life debate has no boundaries. Blindness is already often cited as a "severe disability" worth considering when making decisions about whether or not to provide treatment for critically ill newborns. In Nazi Germany, people with disabilities were called "useless eaters." What's to keep this mentality from becoming prevalent again? Terri Shiavo is not a pawn. She is a person with disabilities, and what happens to her touches me as a person with disabilities very deeply.
If these controversies make you think, please don't just sit ruminating. Do something.
Listen to Terri's song.
Read the lyrics.
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