By Ben Mattlin
When I heard that Professor Stephen Hawking had died, at seventy-six (March 14), my first question was, What of?
The media and general public seemed to assume that his disability had finally caught up with him. Perhaps it had, but I wanted to make sure. I have a similar disability. Mine is spinal muscular atrophy type 2, a progressive neuromuscular weakness that’s practically indistinguishable from Hawking’s "motor neurone [sic.] disease," as the UK’s Guardian newspaper put it (most other sources dubbed his a form of amyotrophic lateral sclerosis, or ALS).
To my surprise, I could find no cause of death in any of the obits I read. Yes, I saw over and over that he had surpassed his doctors’ original prognoses by more than fifty years. So maybe it was reasonable to assume that his demise was at least related to his disability, if not caused by it. But I’m not completely sold. I know how easy it is to blame everything on a disability.
Worse still, for me, were the maudlin comments and cartoon drawings on the Internet that hinted he was better off dead—that now his spirit was free of the shackles of his wheelchair. Puh-lease! Don’t we know by now that a wheelchair is not a prison but a liberating vehicle?
In the Wall Street Journal, op-ed contributor Melissa Blake wrote, “The idea that wheelchairs hold people back is such an outdated misconception; in fact, they do just the opposite. They’re not a hindrance. They’re incredible tools that give people with disabilities new freedom and power—a chance to thrive in an able-bodied world. To see them as anything less is insulting to those who depend on them every day."
At the same time, fellow disability-rights activist Mike Ervin opined in The Progressive: “Rolling through life in a wheelchair like Hawking is not a life of perpetual Hell. But it is Hell when my wheelchair breaks down. Because then I’m stranded. My wheelchair is what makes it possible for me to get around and enjoy life. My wheelchair makes me free.”
I sounded a similar note back in 2005 on NPR: “Are there no wheelchairs in heaven? ... For me, if there is a heaven, it’s not a place where I’ll be able to walk. It’s a place where it doesn’t matter if you can’t."
Clearly, it didn’t matter much to Hawking. He lived a full (and highly visible) life from his wheelchair. Many people, including those of us in wheelchairs, were awed by his many accomplishments. He traveled around the world, gave lectures to large crowds using his computerized voice-output gizmo, wrote books, and made scientific discoveries I’ll never understand.
In middle age, he left his wife of many years, just like many other middle-aged guys do! (Sorry, those of you who loved the romantic biopic, The Theory of Everything. It gave some viewers the false impression of a happily-ever-after ending.) Then Hawking married a second time, to one of his nurses. That didn’t last either, as I found out when researching my book on interabled relationships, In Sickness and In Health.
I had wanted to include Dr. and Mrs. Hawking in my collection of couples who were successfully living with one member’s disability. When I finally got a hold of an assistant for Professor Hawking, she told me flatly, “There is no current Mrs. Hawking.” I still tried to get a comment from him, but she said he was not interested.
Those of you who’ve read my previous essays know that I’ve often been mistaken for Stephen Hawking—or as some strangers have put it, “that science guy.” I don’t actually look like him at all, but as I said before, I have a similar disability to his. My posture is not unlike his. My wheelchair is fairly high-tech, too. I drive it with my mouth. And I wear glasses, which he did. But other than that, I don’t see the resemblance.
Nonetheless, like many of us wheelchair-users, I couldn’t help feeling a deep personal affinity with the professor. I’m not sure if, given the chance to chat, we would’ve had a single thing in common. But I imagine we shared a number of experiences. And I admire the way he didn’t just hide in his laboratory or think-tank. He got out there!
I’ve often wondered, Would Hawking have become so famous if he didn’t have such a highly visible disability? Sure, he became known because of his groundbreaking ideas about black holes, but he stayed a megastar because his disability became emblematic. It boosted his persona. It helped him get noticed and listened to. It made him cool, intriguing.
And now, who will replace him in the disability iconography? I suppose the most famous living disabled person is Peter Dinklage, that dashingly handsome and charismatic short-statured actor who stars as Tyrion Lannister in Game of Thrones. Or doesn’t dwarfism count?
About the Author
Ben Mattlin is the author of Miracle Boy Grows Up and In Sickness and In Health: Love, Disability, and a Quest to Understand the Perils and Pleasures of Interabled Romance, and a frequent contributor to Financial Advisor magazine. His work has appeared in the New York Times, Los Angeles Times, Washington Post, Chicago Tribune, USA Today, and Vox, and on NPR. He lives in Los Angeles, California. Follow him on Twitter at @benmattlin and visit his website.