The life and death of Terri Schiavo showed the world the challenges people with severe disabilities face when they are unable to communicate their wishes. Unable to care for herself for 15 years, Schiavo had parents and siblings who so prized her life, they were willing to spend their own lives giving everything they could to maintain hers. It seems to me that this display of unconditional love gave Schiavo dignity during the darkest years of her life. They set examples for the world to emulate when caring for people with severe disabilities who can’t care for themselves.
Across the nation, tempers flared during the debate on whether Terri Schiavo should or should not be removed from life supports. Heated debates centered on the questions, what is life and, by extension, what is quality-of-life? Certainly one positive that came out of the agony over the Schiavo case was the attention it focused on the need for living wills. As Senator Tom Harkin (D-IA) said, “I have long been an advocate of the rights of people with disabilities. Many in that community are keenly aware of the risk of incapacitation. In such cases, I believe that every precaution should be taken to learn and respect their desires regarding the removal of life supports.”
The challenge confronting Schiavo on whether she should live or die was that she could not speak on her own behalf. The communication assistive technologies have not progressed far enough to assist someone in her incapacitated condition. For example, she could not operate an augmentative communications program to speak for her. She could not use eye gaze technology to communicate her desires. She could not use any form of communication to say whether she wanted to live or die. In the medical world, she was living in a vegetative state without any chance of recovery. Under these conditions her husband wanted to take her off her life support systems.
Even though she existed in a vegetative state, she was a human being who was living, breathing, and not terminally ill. She had the best quality-of-life available to her. But her quality of life tragically became a pawn in the match between her husband and blood relatives over whether she lived or died. She became a political pawn on state and national levels over whether she should live or die. Her husband’s unbending devotion to terminate her life, because she allegedly had told him she would not want to be kept alive artificially, showed legal flaws in a system that treated her as property and not as a human being with the right to live.
While I believe families have the right to terminate the lives of terminally ill people surviving by artificial means, the unanswered question is, since Terri Schiavo was not terminally ill, did she have to die? She had parents and siblings willing to care for her. The manner of her death-starvation-I believe, places a heavy black stain on the United States. We would not allow the worst killer on death row to starve to death, so why would we allow a person with a disability to?
Terri Schiavo’s death will be remembered for a long time. It teaches us lessons. One is that our legal system did, at least, provide more than 20 opportunities for Schiavo’s parents to present their case to keep her alive. I disagree with the outcome, but I think that is a positive: a sign of the wisdom of a system that values deliberation in the face of such a serious issue. We are reminded that despite legislative intimidation, we are three co-equal branches of government.
Another lesson is, we need stronger laws granting authority to a spouse to take someone off artificial life support systems. As it is, the system errs on the side of spousal rights, even to the point of accepting “he said/she said” testimony over matters of life and death. The laws should raise the bar, I believe, and err on the side of caution.
Another result is, as a nation, we must look at the human and economic costs to keep people alive when there is no hope for recovery.
Lastly, Schiavo showed us that when preparing people for death, we must allow them to die with dignity.
John M. Williams is Orbit’s assistive technology columnist. He lives in Virginia near Washington, DC.
Opinions expressed in this column are those of the author and not necessarily those of United Spinal Association or Orbit.
