Disability activists marked the anniversary of Terri Schiavo’s death and vowed to renew their resolve to continue the battle to promote meaningful safeguards for the thousands of disabled Americans who, like Terri Schiavo, have guardians making life-and-death decisions on their behalf. The dangers to people with disabilities did not begin with the publicized tragedy of Terri Schiavo and they did not end with her death.
In fact, there are indications that things have gotten worse during the year since Schiavo’s death. Activists point to the case of Haleigh Poutre, an 11-year-old girl in Massachusetts. After she was allegedly beaten by her adoptive mother and stepfather, the Department of Social Services sued to disconnect young Haleigh from her ventilator and feeding tube. Ironically, she was saved by a court challenge from her stepfather, who would have faced a murder charge had she been disconnected from life support. Within days of a court order “allowing” her to die with “dignity,” DSS reported that Haleigh Poutre showed signs of awareness and the ability to follow simple requests. She is now in a rehabilitation hospital. This case raises questions about doctors’ “rush to judgment” in declaring people with brain injury permanently unconscious, and about the state’s – through the courts and its agencies – eagerness to withhold treatment and end their lives.
Activists fear that the Poutre case is the tip of an iceberg, and expressed frustration with the media and its inability or reluctance to engage in open, complex discussions of these issues.
“Even though at least 26 national disability groups expressed concern over apparent violations of civil rights and guardianship laws in the withholding of food and fluids from Terri Schiavo, the ‘culture war’ framework imposed by others carried the day and still dominates the discussion,” says research analyst Stephen Drake. “Players as diverse as Howard Dean, Randall Terry, Fox News and the New York Times all seem invested in making the public forget that the debate around Schiavo was never a simple right-left controversy.” Drake pointed out that in addition to national disability groups, Reverend Jesse Jackson, Ralph Nader and Senator Tom Harkin all expressed concern about Schiavo’s death and about people in similar situations.
“The media, pundits and demagogues have all but erased that complexity from the public consciousness,” says Drake.
In the year since Ms. Schiavo’s death, even more disability organizations have joined in a Statement of Common Principles developed by the national disability groups that filed three amicus curiae briefs in the Schiavo case. The Statement (see http://thechp.syr.edu/endorse/) sets out principles to guide a guardian’s decisions with respect to life sustaining medical treatment. “We see many indications that managed care, government funded health care providers and overburdened courts have ignored constitutional principles that we used to take for granted, threatening millions of old, ill and disabled Americans who are endangered on many fronts,” added Diane Coleman, president of Not Dead Yet.
Not Dead Yet is a national disability rights organization that leads the disability community’s opposition to legalized assisted suicide, euthanasia and other forms of medical killing.
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