House Panel Hears Disability Rights Perspective Surrounding
By Dave Reynolds, Inclusion Daily Express
April 22, 2005
WASHINGTON, DC--A Congressional panel heard testimony Tuesday from the much overlooked disability rights point-of-view regarding Terri Schiavo's March 31 death.
Members of the Subcommittee on Criminal Justice, Drug Policy and Human Resources, part of the U.S. House of Representatives Committee on Government Reform, was examining the rights and responsibilities of people with certain disabilities in Medicaid and Medicare programs. In particular, the panel focused on how the federal health care programs deal with ordinary care of "incapacitated citizens who are not in the dying process".
Diane Coleman, president of the disability rights group Not Dead Yet, told the panel that, in the wake of Schiavo's dehydration and starvation death, it is time to "go back to the table and talk about how to build a health care and legal system that respects us all."
Coleman said that, leading up to Schiavo's death, the disability rights message was drowned out by the debate that erupted between pro-life religious conservatives and pro-choice liberals.
"When we analyze, why have the pro-life and religious advocates received such disproportionate attention, we are forced to conclude that disability rights advocates don't fit a script that everyone else seems determined to follow."
"For the last three decades, certain bioethicists have told the press and the public that euthanasia is about compassionate progressives versus the religious right. Never mind that these bioethicists are actually talking about the legal parameters for statutory guardians and health care providers to medically end the lives of people with disabilities on a discriminatory, non-voluntary or involuntary basis. Never mind that it takes more documentation to dispose of our property than to dispose of our lives. Concerned disability groups don't fit the script and so we have been marginalized or ignored entirely."
Bob Sedlmeyer, whose 19-year-old daughter is "not unlike Terri Schiavo", told the subcommittee: "Valerie will ever remain a life in need of total care. She will never hold a job. She will never vote in an election. She will never exercise her freedoms of speech, assembly or religion. She will never make a positive contribution to society. Of what value, then, is her life? For what purpose, then, should her life be sustained?"
"It is frightening to me that the value of Ms. Schiavo's life, as measured by the scales of our justice system, did not merit even food and water. I fervently hope that such scales will never be used to assess the value of my daughters life, and dreadfully anticipate the day when her right to die may become her duty to die."
Kate Adamson told the panel: "I know what it is like to be hooked up to respirators, to be fed by a feeding tube. I even know what it is like to have your feeding tube turned off for eight days."
Adamson explained that age 33 she sustained a catastrophic injury that left her, from all outward appearances, in an unconscious state. The truth was, however, that she was "fully conscious, alert, awake, aware and in extreme pain with no capability of expressing what I thought."
"As I laid there in my room I heard the doctors talk about my impending death and their plans not to treat me. I can assure you at that moment of abject fear and despair my idea of what was the right thing to do for an incapacitated person had drastically changed from my early uneducated beliefs."
Adamson gave a horrifying account of how she was able to feel every sensation as doctors cut her open -- without anesthesia -- to insert a feeding tube through the wall of her stomach.
Testimony by Diane Coleman
Testimony by Bob Sedlmeyer
http://reform.house.gov/UploadedFiles/Bob%20Sedlmeyer%20Testimony.pdf [PDF format requires free Adobe Acrobat Reader]
Testimony by Kate Adamson
http://reform.house.gov/UploadedFiles/Kate%20Adamson%20Testimony.pdf [PDF format requires free Adobe Acrobat Reader]
"Federal Health Programs and Those Who Cannot Care for Themselves: What Are Their Rights, and Our Responsibilities?"
(Subcommittee on Criminal Justice, Drug Policy, and Human Resources Committee on Government Reform)