Testimony given on April, 19, 2005
United States House of Representatives
Committee on Government Reform
Subcommittee on Criminal Justice, Drug Policy and Human Resources
“Federal Health Programs and Those Who Cannot Care for Themselves: What Are Their Rights, and Our Responsibilities?”
My name is Kate Adamson. The left side of my body is partially paralyzed. I was once completely and totally paralyzed. I could not move at all. I could not even blink my eyes. Yet I was completely conscious and aware and I was able to feel pain. I just could not tell anyone about it. I know what it is like to be hooked up to respirators, to be fed by a feeding tube. I know what it is like to have your feeding tube turned off for 8 days. Today you will hear my opinion and hear about my personal experience and unique perspective on the question before this honorable committee.
One night I was fit and healthy. A 33 year old mother of two with everything to live for; the next morning I was totally paralyzed. According to the doctors I had less than one in a million chances to survive.
Ten years ago, before this happened to me, I thought I was pretty clear about what I would want if I ever suffered a catastrophic injury or illness. I was sure that I would rather die rather than be a burden to anyone. I wanted no heroic measures taken when my time came. Of course I never expected my time to come so soon. But for me it came at age 33. As I hung on to life – for dear life, I realized how little we know about things until we have been there ourselves. We don’t know what it will be like – or what we will want – until it happens to us. When I found myself in that condition, I knew that I wanted to live. As I laid there in my hospital bed listening to the doctor’s talk about my impending death and their plans not to treat me, I can assure you that my idea of what the right thing to do for an incapacitated person had drastically changed.
Let me tell you what it is like to be aware of what is going on but have to rely upon others to speak for you. When they inserted a feeding tube into my stomach, thinking I could not feel. I could feel everything but I could do nothing. I felt everything they were doing. I felt every cut, every second. I had no way to communicate. I was totally locked into my body, unable to speak, unable to move any muscle in my body. I was on life support and received all my food through a tube, at one point in time my tube was turned off for eight days and I suffered all the pains and agonies of starvation. I was in excruciating pain, in silence. I was on the inside screaming out; I DO NOT WANT TO DIE. DON’T STARVE ME. I WANT TO LIVE, FEED ME SOMETHING.
And if you asked me today if it was worth going through everything I went through to live, I would say without a doubt, and without hesitation, “Yes!”
As a disabled person my life is as important as any life. My children love me as much as any children love their parents; my husband loves me as much as when I had the full use of 2 good arms and 2 good legs.
When I waged my fight to get treatment, the way life was viewed in this country was a potent weapon in my husband’s fight to save me. It would not be so today.
In 1995 you just didn’t do your best to speed up death. You just didn’t starve people to death assuming that was a painless death. Today people do. Today courts back up selfish disregard for human life with court orders that terminate life. The courts do not even require evidence proving the issues of life and death beyond a reasonable doubt. You can take a life if the person’s life is deemed by so-called experts to be not worth living. Courts are even willing to end lives based upon pure hearsay evidence presented by guardians who may no longer have their wards best interests at heart or may even have a conflict of interest.
In this country in the year 2005, federal judges, and state judges, said to people like me that we don’t count. Judges said to my family that I was not worth as much as a full bodied person. You think I am wrong? Then tell me of one case when this Congress or any courts of this land would allow you to starve to death an able bodied male or female, yet that is just what was done in the Terri Schiavo case. If I am wrong then explain it to me or to the other millions of disabled people in America who, I might add, do vote.
Terri’s case went so badly off course because antiquated civil guardianship law was applied to a life or death question. No person should ever be put to death in this country again without providing that person the same right you afford to mass murders. Michael Schiavo had the right to hire all the experts he wanted and he had the money to do it having won 1.3 million dollars in a malpractice case. Unbelievably, he was able to hire attorneys and experts who are proponents of euthanasia using the very money that was supposed to be used to treat and try to rehabilitate Terri.
Scott Petersen at the people’s expense got all the experts he needed to defend his life, but faced with the prospect of having a judge end her life Terri Schiavo initially had no experts to speak for her, and had no attorney to speak in favor of her life and could not even use the funds recovered in the malpractice case for her to get the help she needed in the legal system.There was no balance afforded to her.
Here comes my opinion. Never again allow judges the sole and unbridled discretion to make these kinds of decisions without affording the condemned all the rights of a criminal accused. Give the courts clear direction forcing them to make the guardian prove every element of a case that would result in taking a human life, no mater what condition that human life is in, beyond a reasonable doubt. Never allow hearsay evidence on any matter that would take a life. Make it mandatory for every person to have a lawyer whose sole job is to argue for his or her life, with a presumption in favor of life, and in all such cases pay for that lawyer if the person can not afford it. Provide that lawyer with all the tools he or she would have if they were defending the worst mass murderer.
We are not asking for special rights. Disabled people don’t want to be treated as special human beings. They just want to be treated as human beings.