In the wake of their loss, the Schindler family created the Terri Schindler Schiavo Foundation to stand up for the intrinsic equal dignity of profoundly disabled people and to hold the line against bioethical agendas such as assisted suicide and Futile Care Theory. This has caught the attention of the estimable Nat Hentoff. From his column:“We fight daily,” Bobby Schindler emphasizes, “to shed light on the fact that having a disability of any kind does nothing to diminish a person’s inherent value and worth.” A considerable number of calls come into the Schindlers from members of families faced with the desperate need to save the lives of their disabled loved ones from those who would end them.
“When the foundation gets a call,” says Terri’s brother, “we first ask if they need legal representation or also help from a neurologist or other medical expert.” Referrals are then made to lawyers and doctors who agree with the foundation’s vital educational, lifesaving work.
This is just the start, however, of the Schindler family’s mission to counter the growing pressures for euthanasia; physician-assisted suicide; and the “futility doctrine” at hospitals that judge certain lives not worth living. The Foundation is now seeking support as it establishes such programs as:
“Terri’s Alert”—an emergency notification system to notify our network and supporters when a person like Terri is threatened with the loss of care or treatment. Also, creating a Terri Schindler Schiavo Medical Center as a safe haven for those like Terri who need life-sustaining medical treatment denied to them elsewhere.” (Terri was fatally deprived of water and food, though she was not terminal, and was responsive.)I am surprised that so far there have been no major donors. It’s an indication that disability rights, including denial of life itself, are still of minor interest to much of the public and the far-flung media including the struggles of those families. The struggles of those families whose loved ones are far from dead, but, like Terri, are in imminent danger of being disappeared.
Hentoff ends with an advertisement, which I am happy to repeat here:
As Terri’s father, Bob, has said: “We pay great lip service in this country to disability rights, but as the degree of a person’s disability increases, the level of legal protection that person receives decreases.” This can be changed only by action from those Americans who realize that we are all only temporarily able.To learn more about the Terri Schindler Schiavo Foundation, its Web site is terrisfight.org. Located at 5562 Central Ave., Suite 2, St. Petersburgh, FL 33707, the phone number is (727) 490-7603. All donations to this nonprofit foundation are tax deductible.
I have seen this work ongoing behind the scenes—and these folk are committed. Terri’s death was a tragedy and an injustice. But the Schindlers are working as hard as they can to create a wonderful silver lining around that very dark cloud.
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