Ben Mattlin

Ben Mattlin is the author of Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity.

From his Q & A at The Daily Beast with Jay McInerney:

What’s the genesis of Miracle Boy? Didn’t you first try an autobiographical fiction approach?

You’re exactly right! I was afraid to tell my story directly, wanted to couch it in a fanciful (and imitative) yarn of sex and intrigue. That was doomed to failure for several reasons. First, I was in my 20s and didn’t really have sufficient perspective on my life to tell it right. Second, it was the 1980s, and the world wasn’t ready for the kind of disability story I had in mind. The Americans With Disabilities Act hadn’t even passed yet. People like me just weren’t on people’s radar. We weren’t recognized as a minority group, let alone an interesting, diverse minority group with something to say.

Also, I wasn’t prepared to be honest then. Not until I was in my 40s did I realize that I no longer worried if people thought I was cool. I didn’t have to coat my story in a hip sheen. There was no need to pretend, to fashion myself as something other than what I was and am. I could write about and from my own perspective—write truthfully, authentically—and perhaps establish something new.

But still, I had a block. I just didn’t believe my life was as interesting as people kept telling me.

It was only when I saw my life through someone else’s eyes that I began to get the idea. I had hired a young man from UCLA as my part-time “PA,” as we say. That’s “personal assistant” or “personal-care attendant.” He got me washed and dressed and in my wheelchair in the morning. To me he was a particularly impressive young man—from Africa, with a thirst to better himself and then better his nation. I was as inspired by him as he was by me.

I was no stranger to being called inspiring. Most disabled people are, and we grow tired of it. So I didn’t take it personally. But what he actually said was, “How do you stay so positive?” Apparently, most men he knew were practically drowning in anger.

Which got me thinking about my relationship with anger and...[read on]

--Marshal Zeringue