My friend Bobby Schindler, the late Terri Schiavo’s brother, is one of the kindest, humblest, most decent people I know. And yet, because he dared to stand up for the inherent value of his sister’s life and against the injustice of her court-ordered dehydration — and has continued to fight on behalf of brain-injured people and their families — journalists and bioethicists often look down their noses at him as someone just beyond the pale of sophisticated society.
But in a story in this Sunday’s New York Times Magazine reciting how many allegedly unconscious patients are actually aware — I refuse to use the term “vegetative” as it is a dehumanizing denigration of intrinsic human value — much to my delighted surprise, Bobby is treated fairly and with respect by journalist Katie Engelhart.
As the head of the Terri Schiavo Life and Hope Network, Bobby toils as a patient advocate for people who are being pressured to end the lives of their cognitively disabled loved ones. It is in this context that a woman fighting for her husband’s life meets Bobby:
One day, someone in the group told Tabitha that she should contact a man named Bobby Schindler, a patient advocate who helped people like Aaron.
Tabitha messaged Schindler through his website, and he called her the next day. He listened as if he really cared. Schindler told Tabitha that her hope for Aaron was right and just. That it was correct to resist the doctors’ appeals for “comfort care.” He offered to introduce Tabitha to a lawyer he knew, so that, in dealings with the hospital — for instance, if the hospital wanted to discharge Aaron to a nursing home before she felt he was ready — she could say, “My lawyer will handle this.” And Schindler seemed to understand everything that Tabitha was going through, because of what had happened to his sister, Terri Schiavo.
Bobby is not in it for himself, but to help:
In the 20 years since he established the Terri Schiavo Life & Hope Network, Schindler has never advertised his services. “I think just the fact of Terri’s name is enough for people to find us,” he says. Most of the time, people wanted his advice. Or the name of a good lawyer. Or money. Almost everyone wanted more time. They called from the I.C.U. to say that doctors had started talking about comfort care, about organs.
Schindler would tell the callers what he had come to believe in the years since his sister died one of the most litigated deaths in U.S. history: that there might be hope for their loved ones. That they could fight hospital administrators. That the persistent vegetative state diagnosis was “subjective.”
This is what he does. When Bobby stood shoulder-to-shoulder with Jahi McMath’s mother at a news conference when she was fighting against a brain death diagnosis for her daughter in Oakland, he saw a mother’s pain. Behind the scenes, to my shame, I counseled him against getting involved. Fighting brain death is not the policy hill to die on, I said. Nothing can prevent Jahi from being taken off life support.
I was doubly wrong. In the end, Jahi was not taken off life support but moved to New Jersey, and it turned out, she was catastrophically disabled but not dead. I witnessed it myself. (She later died of complications from intestinal surgery.)
In any event, one can disagree with Bobby’s beliefs and his family’s valiant struggle (in my view) to save Terri’s life. But I am pleased that — finally — a mainstream journalist treated Bobby with the respect and fairness he deserves. And in the New York Times, no less. Will wonders never cease.