Sunday, April 1, 2018

Farewell, Stephen Hawking. Take Your Chair With You!

The death of Stephen Hawking is a great loss for the scientific community, the disability community, and the whole world…or the whole universe, if we are thinking like Professor Hawking. As is usual when a disabled person dies, there has been a lot of chatter about how Hawking is now “free” from his body, his wheelchair, and his communication device. The trite, stereotyped cartoons circulating show him striding away from the power chair into the waiting stars, and it is implied that a mind “trapped” in a limited body has been released to achieve true greatness. But what if I told you when I picture Hawking floating freely through the cosmos, I picture him zooming by in his chair, in a place where it truly doesn’t matter what you use to get around, because everything is 100% accessible?

As someone who has grown up using a power wheelchair, the cartoons depicting Hawking sauntering into the cosmos in a suddenly ambulatory body make me uncomfortable in ways that are difficult to articulate. But after reflecting over the past day, I can say that some of my discomfort can be summarized like this: Why does society assume that true peace and freedom can’t exist in a body like mine? Of course, if there is an afterlife, which I believe there is, we may well have no bodies at all. However, whenever the great beyond is depicted, disabled bodies are erased. Essentially, I am erased, because existing like me has been deemed incompatible with the joy of a Heavenly reward. Ouch.

Stephen Hawking was one of the greatest thinkers the world has ever known. His talent is ordinarily contrasted with his disabled body. The world saw his thoughts as brilliant, his body as broken. But the disabled body (and the disabled mind, for the matter), is not without its own magic. Those of us with disabled bodyminds live in bodies and minds that must adapt and innovate and grow every day around both medical realities and deep social prejudices that we ourselves must unlearn. The very act of taking up space on the planet without apology is one of resistance. That, to me, is pretty damn brilliant. Thus, Hawking’s talent and his disabled body need not be seen as a contradiction. Hawking made his mark not in spite of a disabled body, but in harmony with it, and when we erase that, we feed into the lie that disability and greatness cannot coexist. That lie has tragic consequences that seep into every aspect of society.

That said, “greatness” need not look like a scientific genius. Our world, especially in these challenging times, demands that we recognize greatness in all of its forms and acknowledge that greatness manifests itself as much in a man who uncovers the secrets of the galaxy as it does in the person who shares a kind word with a stranger. When I contributed to a video this summer explaining the importance of Medicaid in my life as a woman with cerebral palsy, an Internet troll challenged my very right to exist because I need help. She asked “in what way I was useful” since I need physical help “just to do basic stuff.” When another person called out her ableism, the troll replied that “unless you’re Stephen Hawking,” she just wasn’t seeing my usefulness.  While Stephen Hawking is one of the standard answers nearly anyone can give when asked to name a disabled person, remember that for every Hawking there are millions of other disabled folks who may never become world renowned professors or famous writers or movie stars…and they shouldn’t have to in order to be treated as people of value.

That troll revealed an ugly sentiment that bubbles beneath the polite veneer of society: too many nondisabled people still believe that disabled folks need to earn the right to exist. The truth is, whether one has unlocked the galaxies or merely spent the day eating a bag of chips, disabled folks deserve life and a world that makes room for us simply because we are human beings.


Don’t celebrate Hawking as an example of what humankind can do when we “overcome disability.” Celebrate him as a testament to what we can do when each and every bodymind in the universe is accommodated and supported. Stephen Hawking did not find true greatness when he “broke free” of his disabled body. He was true greatness in a disabled body. That shouldn’t be so hard for the universe to believe.