Will New Legal Protections Come From Terri's Death?
By Dave Reynolds, Inclusion Daily Express
March 28, 2005
WASHINGTON, DC--One voice that on March 16 got drowned out by the noise of the partisan circus and the "right to life" versus "right to die" debate was that of Democratic Senator Tom Harkin of Iowa.
For years, Harkin has been well respected in the disability community for his efforts on behalf of citizens with disabilities, including sponsoring major legislation designed to give people more control over their Medicaid benefits and championing the 1990 Americans with Disabilities Act.
Just before Terri Schiavo's feeding tube was removed and the push came for Congress to intervene, Harkin sponsored a broad measure in the Senate that would have allowed disputes over an "incapacitated" person's wishes to be reviewed in federal court if the person left no specific instructions regarding medical and end of life care.
"The more I looked at the Schiavo case, the more I thought, wait a minute," Harkin said. "There are a lot of people in similar situations -- maybe not in her specific situation -- but because of a disability cannot express themselves or cannot in any way make their desires known."
The Senate passed a more narrowly-defined bill, then headed home for the Easter break.
The Senate later passed a compromise bill with the House which dealt specifically with Terri Schiavo.
If nothing else, the debate over Terri's situation has brought to international attention the issue of who should decide whether a person with certain disabilities lives or dies.
Congress reportedly plans to go back and look at the issue.
Even Congressman Barney Frank, the Massachusetts Democratic who most strongly opposed the legislation which the Republican-controlled Congress passed on March 21, told the Sunday morning ABC news show "This Week" that the issue needs to be addressed.
"I've spoken with a lot of disability groups who are concerned that even where a choice is made to terminate life, it might be coerced by circumstance," he said.
The New York Times reported that the Senate Health Committee is scheduled to hold a hearing next week with neurologists and palliative care experts on the issue of health care provided to people who can not walk. The House Government Reform Committee also plans to hold hearings on the larger issues raised by the Schiavo case such as the long-term options available to people with disabilities.
And Senator Harkin is currently working with legal experts and disability groups to get his bill refined and introduced back into the Senate.
According to the National Conference of State Legislators, lawmakers in at least seven states -- Alabama, Hawaii, Kansas, Kentucky, Nevada, South Dakota and Florida -- all have proposals dealing with situations such as Terri Schiavo's.
On Monday, disability rights advocates in Minnesota, including an 18-year-old who uses a feeding tube and a 15-year-old who plays adaptive sports, called for state lawmakers to protect their rights in light of the debate over Terri's rights.
"We must not acquiesce to the culture of death and disregard for disability being promoted in our nation," said Jean Swenson, who has used a wheelchair since a spinal cord injury 25 years ago, at a news conference.
"Schiavo case may be just the beginning" (Toronto Star)
"Congress Ready to Again Debate End-of-Life Issues" (New York Times)
"Congress Takes a Look at Disabled Rights" (Associated Press)
"How the Schiavo Federal Court Case Might Have Been Won" by Michael C. Dorf (FindLaw)
"Florida seniors wrestle with care decisions" (Christian Science Monitor)
"Schiavo case spurs Kansans to action; House approves measure making tube removal more difficult for guardians" (Journal-World)
"Schiavo-inspired law goes to Kansas Senate" (Wichita Eagle)
"Disabled seek law on sustaining life" (Star Tribune)