Life, Death and Advocacy

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Josie Byzek

Recently on Facebook, a professor of mine from seminary posted a beautifully-written article by Robin Marantz Henig called “Choosing to Die After a Struggle with Life” that ran in the New York Times. I settled in to read it, but found myself confused as at first it seemed that the man who died, Brooke Hopkins, had a fatal disease, such as ALS or cancer. But in fact, I came to realize, he was paralyzed from a bike accident in 2008.

He decided to stop using a vent, his pacemakers and his feeding tube, check into hospice and wait for the inevitable.

This was his right under law and under any moral or ethical code worth adhering to in a free society. No one should ever be forced to accept any kind of medical treatment or use any kind of durable medical equipment (DME) they don’t want. Plus, we know there was no underlying depression-causing medical issues because his wife, Peggy Battin, who is described in the article as, “a philosopher known for her defense of people’s right to choose the manner and timing of their own death,” had him tested since she says she wanted him to live.

But the factors that led to his decision are infuriatingly everyday frustrations that people with paralysis and other disabilities and diseases constantly deal with. He couldn’t teach anymore, for example.

And he lived with a philosopher who actively supported the right of guys like him to die, which isn’t seen as suspicious at all.

“So beautiful,” read the comments underneath the article on my FB friend’s page. They didn’t even question what it was that made Hopkins think death was preferable to how he was living. That’s how insidious the “better dead than disabled” viewpoint is, even among professors.

I’m glad Hopkins had a good death, I think that’s important, and it’s important for people to know where their line is — what medical support they are willing or not willing to accept. But what can be said about a society that seems to find the deaths of disabled people to be more beautiful than the lives well-lived of disabled people?

Here at United Spinal we have a constellation of programs and projects and services all designed toward one goal: So people with spinal cord injuries and diseases, such as Hopkins, can have great lives. But it’s a fight that requires lawyers and policy departments and caseworkers and advocates and reporters and public speakers and grassroots membership chapters. It requires endless treks to the halls of Congress and the courts of justice. It requires passion and persistence and patience.

And it’s worth it, because our lives are worth fighting for. Your life, specifically and especially, is worth fighting for.

Progress happens every day and one day the built environment will work for everyone, not just those who stand. And receiving health care, including personal assistance and appropriate wheelchairs and tubes and all types of disposables, will be seen as being as much of a basic right as not being forced to stay on a vent.

Someday, and this may just be dreaming, a powerchair user will even be able to hail a cab in downtown Manhattan.

Josie Byzek