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Against The Odds, A 'Miracle Boy Grows Up'

Aug 31, 2012
Originally published on August 31, 2012 12:48 pm

Ben Mattlin has defied expectations for his entire life — starting with being alive at all. Mattlin has a condition called spinal muscular atrophy, and many infants born with it don't live past age 2. But Mattlin grew up to be one of the first students using a wheelchair to attend Harvard. He married, had a family and is now the author of a new memoir, Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity.

Mattlin, whose commentaries have aired on Morning Edition, talks with NPR's David Greene about his condition. "I'm in a wheelchair," he says. "I have a head-rest support because I can't hold my head up. I now drive my chair with a mouth control — a plastic collar around my neck and little itty-bitty joystick I can push with my lips." And, he adds with a laugh, "I wear glasses."


Interview Highlights

On his experience as a poster child for the Muscular Dystrophy Association, a charity long associated with fundraising telethons publicized by comedian and former MDA chairman Jerry Lewis

"My parents kind of believed in it. This was the only organization that existed that would serve them — parents of a child with a neuromuscular disability. First, it was fun — 'I'm going to be famous,' I thought. But after a short time, it got a bit tiresome. ... My final ad was a big full-page ad. ... They had me stand in leg braces and they told me the caption was going to be: 'If I grow up, I want to be a fireman.' I was 6 [or] 7 years old. I was told I had a normal life expectancy at that point [and] I did not want to be a fireman. So I was quite upset. ... I knew I couldn't be a fireman. That was absurd. ... It felt untrue. It felt exploited.

"It gave me a sense of what it meant to be a disabled kid that was not flattering, and did not feel like reality. It made me distance myself from ... my people, from people like me. And when I got over that and came to associate with other disabled people, it was a ... realization that there are some pretty cool people out there and I shouldn't turn my back on that community just because of ... the impression I had of it from these fundraising things that really are not doing justice — and frankly a disservice — to the community they aim to serve."

On how he and his wife learned how to balance her role as his life partner and her role as his attendant

"From the beginning of our relationship, I did not want her to do anything custodial for me. I had a full-time attendant at that point — I was in college — and I didn't want her to do anything at all, until my stubbornness about that became a problem. So gradually, bit by bit, I gave in to her desire to do more things for me.

"There was a big day — I think it was a friend's college graduation or something — and, coming home, for some reason we were stuck — there was nobody else to lift me. And she said, 'Let me try it.' ... She's only 5[-foot-]2 but I'm not that heavy. And she did lift me into the car, and it was suddenly so liberating — that she could lift me, and we could get in the car and go somewhere and didn't need to rely on anybody else. Ever since, there's been a constant balancing act."

On the people who thought he couldn't be a parent, and how he proved them wrong

"I had this dumb idea from childhood that I could do anything anybody else could do, and it never occurred to me that I couldn't. ... So we just assumed we would have children [and] do all the normal things. We did it not without some trepidation — figuring out what I could contribute as a parent. I think my real strength was entertaining the kids, telling them stories — I became a storyteller. There are a lot of aspects to being a parent, and I wanted to be a part of that — and I think I am and have been and continue to be an active, involved parent."

Copyright 2012 National Public Radio. To see more, visit http://www.npr.org/.

Transcript

DAVID GREENE, HOST:

Ben Mattlin has exceeded expectations his entire life. He has a condition called spinal muscular atrophy. Many with the disease don't live past age two, but Ben grew up to be one of the first students in a wheelchair at Harvard. He's married and has a family and now he's written a memoir called "Miracle Boy Grows Up." Mattlin visited NPR West and so our conversation was not in person, but I asked him to describe the man I'd be looking at if we were face to face.

BEN MATTLIN: I'm in a wheelchair. I have a head-rest support because I can't hold my head up. I now drive my chair with a mouth control - it's a plastic collar I put around my neck and a little itty-bitty joystick I can push with my lips to drive the chair. And, I wear glasses. I have (unintelligible) .

GREENE: Those are the same types of wonderful details that are in the book. You actually spent some time, Ben, as a poster child for the Muscular Dystrophy Association, the charity that Jerry Lewis and all of his telethons that we remember were associated with.

MATTLIN: Yes.

GREENE: But you write that that was a very imperfect campaign.

MATTLIN: Yeah. Well, I didn't - all I knew was the Labor Day telethon existed and my parents kind of believed in it. I mean, this was the only organization that existed that would serve them - parents of a child with a neuromuscular disability. Well, at first it was fun. I'm going to be famous, I thought. But after a short time, it got a bit tiresome.

And the one that I remember most clearly, my final ad, that was a big full-page ad which I reproduce in the book.

GREENE: Yeah. It's quite a picture.

MATTLIN: They had me stand in leg braces and they told me the caption was going to be: If I grow up, I want to be a fireman. And I was six, seven years old. I was told I had a normal life expectancy at that point. I did not want to be a fireman. So I was quite upset.

And I do remember crossing my fingers kind of behind my back during the photograph and trying to visualize some other profession. Maybe I wanted to be a scientist or a detective or an astronaut. I knew I couldn't be a fireman. It was absurd.

GREENE: And what did that say about the campaign? What was wrong about it?

MATTLIN: It felt untrue. It felt exploitive. And it gave me a sense of what it meant to be a disabled kid. It was not flattering and did not feel like reality. It made me distance myself from - what, from my people, from people like me. And when I got over that and came to associate with other disabled people, it was a real realization that, oh, there are some pretty cool people out there and I shouldn't turn my back on that community just because of what - the impression I had of it from these fundraising things that really are not doing justice - and frankly, doing a disservice - to the community they aim to serve.

GREENE: Well, Ben, part of your book is a romance story. You and your wife Mary Lois, who you call ML throughout the book...

MATTLIN: Yes. ML. Yes, that's right.

GREENE: And I wonder, one of the struggles that really came through was both you and her balancing her role as your life partner and in some ways her role as your attendant, someone who took care of you. How did you both make that work in your marriage?

MATTLIN: Good question. From the beginning of our relationship, I did not want her to do anything custodial for me. I had a full-time attendant at that point. I was in college. And I didn't want her to do anything at all, until my stubbornness about that became a problem. So gradually, bit by bit, I gave in to her desire to do more things for me.

There was a big day. We - I think it was a friend's college graduation or something, and coming home, for some reason we were stuck, there was nobody else to lift me. And she said let me try it. I said all right, fine. She's only five-feet-two or something but maybe she could. I'm not that heavy.

And she did lift me into the car, and it was suddenly so liberating, that she could lift me, and we could get in the car, we could go somewhere and didn't need to rely on anybody else. Ever since, it's been a constant balancing act. To this day, frankly, as my story progresses and we have children, for instance, it becomes even more complicated.

GREENE: You as a parent, it really - there were some friends who you mentioned in the book who couldn't understand how you could be a parent, being disabled.

And boy, it sounded like you were determined to prove them wrong.

MATTLIN: Yeah. I had this dumb idea from childhood that I could do anything anybody else could do, and it never occurred to me that I couldn't, other than be a fireman.

(LAUGHTER)

MATTLIN: But, you know, so I just - we just assumed we would have children, do all the normal things. We did it, not without some trepidation figuring out what I could contribute as a parent. And I think my real strength was entertaining the kids, telling them stories. I became a storyteller. And there are a lot of aspects to being a parent, and I wanted to be a part of that, and I think I am and have been, continue to be an active, involved parent.

GREENE: You know, Ben, if you could just read the - as long as you don't think this will give too much away, I would love to hear you read the ending, because it was, you know, it was incredibly powerful. Just the last paragraph there. You're talking about your - you and your wife, ML.

MATTLIN: Right. And the murderer was - no, sorry.

(LAUGHTER)

MATTLIN: OK.

GREENE: Don't give that away.

MATTLIN: And indeed, ML and I are both growing older, more fragile. Yet whatever happens, I know we're a good team. Deep in my osteoporotic bones and atrophied muscles, I feel we were designed for each other. We keep planning, mourning what's lost, celebrating what's gained, and then going on. That's just the way our lives are. Try not to be too jealous.

GREENE: Wow. And Ben, why do you think that people might be jealous?

MATTLIN: That was sort of a little joke. I just thought it's sort of funny. You know, I'm trying to say good things about my life and talk it up and yet it's ironic because it's been quite a struggle. So people should just, I guess, take it for what it is, the good and the bad.

GREENE: Ben, this has been a true pleasure talking to you. Thank you. Thank you for joining us.

MATTLIN: Oh, it's a pleasure and a privilege. Thank you.

GREENE: Ben Mattlin. You can read an excerpt of his book, "Miracle Boy Grows Up," and npr.org. You'll likely hear Ben's voice again. He offers occasional commentaries on this program. This is MORNING EDITION from NPR News. I'm David Greene.

STEVE INSKEEP, HOST:

And I'm Steve Inskeep. Transcript provided by NPR, Copyright National Public Radio.