The peculiar series of events which have led up to the current debate seem to have avoided both the judge's scrutiny and media coverage. Michael Schiavo says his wife would not have wanted to live in her current condition. And under Florida law a spouse has the right to decide, though his powers are limited by the U. S. Constitution.
Michael Schiavo conveniently remembered Terri's alleged wishes only after the malpractice judgment was awarded. A review of court records shows that of the $700,000 from a malpractice settlement Michael won that was to go for her care, over half has been spent on his legal fight to disconnect her feeding tube. Over $200,000 of it has been paid to his attorney George Felos. Michael Schiavo has refused to let his wife receive therapy from a speech pathologist, a common type of rehabilitation available to people with brain injury. A prominent expert filed an affidavit that Terri Schindler-Schiavo can swallow her own saliva, and could potentially be weaned from the feeding tube and recover some speech, so that she could indicate her own wishes.
A recent report in the New York Times Sunday Magazine stated that after months or years with little sign of consciousness, people may still be capable of complex mental activity. The reporter, Carl Zimmer, wrote, "To the medical world, ...hundreds of thousands of ...Americans who suffer from impaired consciousness present a mystery." Whether Terri Schindler-Schiavo is -- or isn't -- capable of "high level thought" is not the real issue here. It is clear that she is conscious and responsive beyond mere reflexes, as has been demonstrated by her ability to track with her eyes, respond to verbal commands by physicians who examined her on video, and react to those she loves.
She has a severe brain injury, yet has not undergone the rehabilitation that is typically given to people with this type of disability. People with severe cognitive disabilities are devalued as lives not worth living. In truth, the lives of all of us with severe disabilities are often considered expendable. This is why we are speaking out.
Americans who have disabilities -- cognitive disabilities like Ms. Schindler-Schiavo -- have rights. Congress decided that in 1990 when it passed the Americans with Disabilities Act. Yet most of society does not consider that Terri Schindler-Schiavo has any rights other than the right to die. We believe she has a right to therapy and support; we believe the Americans with Disabilities Act requires that.
Consider David Jayne, a 42 year old man with ALS. Every five seconds, a ventilator on a cart next to his bed pumps air into his lungs. He is not able to move. Twelve years ago, Jayne would have dismissed this existence as a living hell. "Yes, I am very passionate about the Terri Schindler-Schiavo issue, because I live it," says Jayne, who was profiled in TIME Magazine in 2001. Jayne, like many of us, would have once said he could not imagine living in his current state. "If someone had told me I would be paralyzed and tethered to a ventilator, yet still find meaning in life, I would not have believed them." Today he says, "It is incredibly wrong for society to decide who lives or dies based on their opinions of what level of quality of life is worth living."
In this matter of living as a disabled person, those of us who live with disability, are the experts -- not husbands, not parents, not doctors. We know that life with a disability is worth living, and we know that what makes life awful for us is the attitude of "better off dead" that drives much of the thinking surrounding people like Terri Schindler-Schiavo.
The fear of disability and the resulting bigotry adhered to by most non-disabled Americans is often cited by people with disabilities as one of the most difficult barriers to overcome. In a recent column, Bill Press stated, "I wouldn't want to live like that, would you?" We respond: like what? Terri Schindler-Schiavo is characterized as "...a brain-damaged woman who has been kept alive artificially." Meant to signal horror, the concept has no real meaning to us who live by "artificial" means. Is a person on dialysis being kept alive artificially? Is a person taking insulin being kept alive artificially? Is a person who undergoes open-heart surgery, or cancer treatment, or intensive care in a hospital being kept alive artificially?
It is a well-known fact among those of us who live with disabilities that a feeding tube is a low-tech support, and people who use them can and do live full and meaningful lives. It was invented in the nineteenth century and relies on nothing more than gravity to make it work.
Terri Schindler-Schiavo is said to be in a "persistent vegetative state." But is she? In court, the medical experts were divided. Florida Circuit Judge George Greer say she has not demonstrated sufficient actions to prove "cognitive function" because her actions were not "consistent" or "reproducible." But Florida law defines "PVS" as a condition in which there is no evidence of responsiveness. By ignoring Florida law, Judge Greer has violated her due process rights, as many of us asserted in our friend-of-the court briefs.
Historically, many people with disabilities such as autism, Down syndrome and cerebral palsy have been thought to be incapable of communication. Increasingly, yesterday's assumptions about inability are being thrown out when confronted with the reality of people exceeding the low expectations put on them by others.