‘Miracle Boy Grows Up’: Ben Mattlin Speaks to Jay McInerney

Born with spinal muscular atrophy, Ben Mattlin grew up before laws protected him. He speaks to Jay McInerney about his new memoir.

Dave Teel

I met Ben Mattlin when he attended a reading I was giving in New York some 25 years ago. I admit, he was easy to pick out of the crowd—occupying a wheelchair in the front row. We talked after the reading and stayed in touch. Over the years I saw Ben in New York and Los Angeles, where he currently resides, and gradually learned about his life. Ben isn’t your typical guy in a wheelchair. He attended top New York City private schools and graduated from Harvard, and he is a contributor to Institutional Investor, the Los Angeles Times, and NPR. He’s married and has two kids. But Ben wasn’t supposed to be able to do any of these things. He was born with spinal muscular atrophy, which kills 50 percent of the babies diagnosed with it before the age of 2. Ben was born at a time before there were laws protecting his right to attend any school he wanted, or to be treated as an equal applicant for jobs, and he was fortunate to grow up during a time when the Disability Rights Movement was gaining traction. Laws were changing all the time, ensuring equality for the disabled at work and school. Developments in voice-recognition software enabled Ben to make a living following his passion, writing. I have always hoped that Ben would write a memoir, and here it is, Miracle Boy Grows Up, a very honest and entertaining look at the realities of living with a serious disability.

I guess the obvious place to start is, what’s your writing process? How do you write and how has that changed with technological advances?

To write this book, I started first thing every morning (well, after coffee) while I was still somewhat dreamy-headed. Parked my wheelchair in front of the laptop, which is on a table in a corner of my living room. Kids were at school, wife was at work, and my attendant kept mostly quiet. And I made myself keep writing, following my outline (I had never used an outline before!), in 20-page chunks before going back to do revisions. It went surprisingly quickly.

The process itself involved lots of closing-of-the-eyes to focus the mind and conjure memories—as well as unexpected bouts of weeping. Some memories are more painful than others.

How do I write physically? I use voice-recognition software. I was one of the early adopters of this technology when it became feasible in the early 1990s. Before that, I slowly and painstakingly pecked out one letter at a time, sometimes using the eraser end of a pencil for leverage, and other times copying and pasting letter by letter. When I could write longhand, I did that sometimes and then paid a typist. But even in those bad old days of the 1980s—after I had graduated from Harvard and begun looking for work, in vain—I knew I had to learn to “interface with a terminal with sufficient rapidity,” as one would-be employer put it. So I kept up with technology. I remember going to an early demonstration of voice-recognition computing at the California State University in Northridge. The machine took up an entire room, you had to dictate extremely slowly—Word. By. Word.—and the equipment cost about $40,000. Still, I was thrilled by the possibility. I hoped but doubted I would live long enough to see voice-recognition become something I could use.

To my amazed delight, in very few years there was a home version available for less than $5,000. I finagled the state vocational-rehabilitation department into splitting the cost with me. The technology was still slow-ish, and I had to dictate into DOS and subsequently convert documents into Windows. Yet I was ecstatic! I had been wanting to use a computer for so long! Three months later I had written a second novel, whereas my first novel—etched out manually, letter by letter—had taken five years to complete. Voice recognition computing was simply the right tool for the job.

Now, of course, you can buy a version for about 100 bucks. And it’s faster and more accurate than ever.

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.

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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 more constructive emotions. I certainly have my moments of rage, but somehow—it was true, he was right—I invariably came around to feeling hopeful. Why?

So I began writing about where my sense of optimism came from. I wasn’t at all familiar with the memoir form and had no idea what I was doing. But soon the idea filled me up. It practically grabbed me by the throat. I had to continue.

I sent out pages, got feedback. A few kindly agents gave me homework assignments—memoirs I had to read. Soon memoirs were all I read. Not celebrity memoirs, either. I wanted books that justified themselves by their literary merit. I began to gain a sense of what worked and what didn’t, at least to me. I was still dead set on writing the unadorned truth, but I had to do it in a way that leveraged my strengths as a writer … and would appeal to readers.

Ultimately I had some sample chapters and an outline. But I couldn’t complete the book until I had a contract. Just couldn’t make that leap. It took five years to find a publisher. At that point, like a taut and twisted rubber band, I sprung into action and completed the book in about two months.

Were you inspired or influenced by other memoirs? Are you a fiction or non-fiction guy?

Well, I’m a real guy, but my taste has always run toward fiction—until I started working on this book. Then I became obsessed with memoirs, and pretty much read nothing else. At its best, a memoir blends the importance of history and the relevance of journalism with the readability—the sheer escapist enjoyment—of a good novel. (At worst, it’s self-indulgent narcissistic score-settling, or just boring.)

For me, the archetype of the modern memoir has to be Frank McCourt’s Angela’s Ashes. From it I learned the importance of limning a particular setting, a sense of place. With humor and charm McCourt’s masterpiece transports you, yet it also has an immediacy that I hoped to emulate as well. Only, without the brogue.

At the same time, I was moved by Mary Karr’s voice, especially in Lit, which I think is her best. I should have had no interest in that book—what do I care about a divorced mother’s battle with alcoholism and ultimate Catholic epiphany? Yet she drew me in and carried me along breathlessly. Not because of the events in her story. It was 100% because of her voice, her writing style. Magic! Also, it’s a memoir about adults, not just childhood, which I wasn’t sure was possible before reading this.

I liked the way Wilfried Sheed’s In Love With Daylight weaved his polio-stricken childhood into a narrative about alcoholism and other challenges. It normalized the disability experience as one of the many facets of a complicated life—not the centerpiece, but not trivial either.

Jeannette Walls’s The Glass Castle is maddening but irresistible. It contains such riveting graphic detail that you simply can’t put it down. From it I think I learned that no matter how upbeat I may try to be, readers need a sense of danger, too—some feeling that things might not turn out all right after all.

Also enjoyed Liz Murray’s Breaking Night, which helped me learn the difference between writing everything you can remember about your past and focusing in on those events that are relevant to your theme—specifically, those events that are not the same as everybody else’s, that make your particular story interesting, different, and worth publishing.

I could go on and on, but I don’t want to leave out Harriet McBryde Johnson’s Too Late To Die Young, Simi Linton’s My Body Politic, Jean Stewart’s The Body’s Memory, and Anne Finger’s Elegy For A Disease, among others related to disabilities. Each of these delves into the disability perspective from a savvy, class-conscious viewpoint that taught me a great deal about the interchange between the political and personal.