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part of what makes me stand out from the crowd, so to speak. It’s a piece of my identity.
    My “identity” seems to be one thing in these MDA ads and quite another in my real-world daily life. My handicap may be measurable to Dr. Spiro, but what it means—its impact on who I am and my place in the world—is open to broad interpretation.
    The following Labor Day, after I’ve quit, we turn on the TV to watch a little bit of the telethon. To me, it’s boring and corny and my mind wanders. Mom doesn’t like TV (which is funny since she used to work in TV), and has little patience for the broadcast despite her fondness for the muscular-dystrophy organization itself, but Dad is transfixed. “Oh, oh, oh!” he erupts suddenly with forced melodrama. “Those poor kids! I’ve got to call right now and pour out my nickels and dimes!”
    Then he bursts into a hearty laugh. Alec laughs at Dad’s laughing, and I do too. I’m not sure I get the joke, but it has something to do with the schmaltzy profiles of weird, dying kids. Usually Alec and I like to watch comedies like
    F Troop and I Dream of Jeannie , which Mom and Dad don’t watch with us. Another show I like is Ironside , which Mom suggested I try. She thinks I like it because the police chief is in a wheelchair, but that’s not really the point of the show, is it? Still, it’s a very different image of people like me than what you usually see on the telethon.
    “You shouldn’t make fun of them,” Mom says, reentering the room. The TV is in Mom and Dad’s bedroom, and she’s come in to get something from her desk. “Just because they’re not like Ben doesn’t give you the right. It’s a good cause and it just might help Ben one of these days.”
    Dad says he’s sorry and didn’t mean any harm. “I know it’s important,” he says from the phone. He’s gotten up from their king-size bed to call in a donation. They’re not like Ben . That’s what Mom said. That’s what I hear. It’s been the going line for a long time. I’m different from other handicapped kids. When people treat me like I am one of those pathetic dying kids, when strangers feel sorry for me, it’s funny in both senses of the word—odd and humorous. On occasion little old ladies offer to buy me cookies, and my parents won’t let them. Mom says I shouldn’t feel sorry for myself and shouldn’t encourage other people to either.
    So why, I wonder, does she defend the telethon? It does bring images of kids in wheelchairs into people’s homes, instead of maintaining the status quo of unsightliness and shame. But it certainly doesn’t make them look good or competent or equal. It doesn’t glamorize them. It offers them up covered in a syrupy goo of sentimentality.
    And if those kids aren’t like me—and they aren’t—then why does Mom say the Muscular Dystrophy Association helps families like ours? What’s it got to do with me? I don’t have muscular dystrophy. I’m not going to die from my spinal muscular atrophy—that’s what Dr. Spiro says, anyway. I’ve outlived the dying phase.
    I don’t see how the pathetic spazzes on the telethon have anything to do with me except for being in wheelchairs.
    Unless I’m wrong about myself. About them.
    No, I definitely don’t want to be confused with those kids. I don’t want to feel sorry for them, either. It’s too depressing to bear, and I wonder if it’s real anyway, if those kids are as bad off as they say, or if they’re actually like me and the telethon is just telling people to feel sorry for them. In any case, I’m brought up to keep moving forward, never to pause for pity. Pity is useless, the enemy of self-esteem and industry.
    Mom always says I can be anything I want when I grow up, and I believe it’s true.

DIVORCE, BAR MITZVAHS, AND PREADOLESCENCE—WASN’T MY LIFE HARD ENOUGH?
    1972–1976
    “For her, of course, the measure of how you held up in the face of a life-threatening illness was not how much you