Miracle Boy Grows Up Read Free

for damage and scooping me up off the garage floor and placing me back in my chair. This time he remembers the seat belt.
    He keeps asking if I’m okay. This is when I start to cry. A few heaves at first, then gushes. He rushes me upstairs, to our apartment, to Mom. I can’t stop crying, though I try. I become breathless.
    “There, there,” says Mom, taking me into her arms. She quickly turns practical. “Stop your crying and tell me what hurts.”
    I can’t stop bawling and haven’t a chance of answering. She holds me still a moment and it feels warm and lovely. Then Mom sees a bump on my head. I mutter about my finger and try to produce my right hand. Its ring finger is swollen and rosy-purple and aching. Mom calls for ice, which Dad promptly delivers. My weeping subsides, replaced by a youch at the touch of ice to my scalp.
    “You’ll be fine,” Mom declares.
    She puts the ice to my finger and looks up at Dad with lightning bolts.
    Parents of kids with disabilities tend to be unduly overprotective. It’s the extra layer of guilt. From the start they feel responsible for their child’s limitations. It doesn’t matter if the disability is from an accident or heredity; parents see it as a gnawing reminder of their own shortcomings. They feel intrinsically blameworthy. I’m grateful my parents aren’t overly overprotective, but they feel the guilt. For Mom, the day she learned my floppiness was permanent and inborn was the worst of her life. She tells me this whenever I ask and even when I don’t. That’s partly because she’s concerned about my future, but she also questions what she did to deserve this. For Dad, the guilt feelings evolve into a hunt for solutions, and for someone to blame besides himself.
    Many parents turn angry—an animal rage directed at doctors, bureaucrats, God, or even the child him- or herself. Sometimes these feelings spark a crusade for remediation or justice, a frantic pursuit of a lawsuit, a cure, or political action. But whatever the merits of the cause, the fire is stoked primarily by the need to alleviate the parent’s unbearable burden, which is not necessarily in the child’s best interest.
    “You must, must, must remember the seat belt,” Mom scolds Dad, who stands silently nodding. “How could you forget?”
    A spate of rhetorical questions follows. Could she trust him ever again? By extension, if my own father can forget my seat belt what about other people to whom my care is entrusted?
    “This cannot happen again!” she says repeatedly.
    Then Mom’s hard tone turns abruptly to me. It’s in her Republican upbringing to have no patience for self-pity and whining. Look out for yourself. Don’t wait for a handout . She’s always quick with advice to step up to the plate . She keeps an ongoing, or quickly composed, mental to-do list, which she likes to whip out like a gunslinger.
    “And Ben,” she says then, “Ben, it’s your responsibility to check if the person with you has forgotten your seat belt. Do you understand? Do you hear me? Ultimately it’s your responsibility. You must always, always speak up. Understand?”
    Not yet four, I’m stunned yet struggle to comprehend. I try to take her admonitions as seriously as I can. Speak up. Don’t be shy. Ask for what you need. People aren’t mind readers. You’ve got to speak up . I hear these phrases a lot. Light a candle instead of cursing the darkness. The squeaky wheel, etc .
    In those days, the mid-1960s, there are scant resources for my parents to draw on, other than doctors. No support groups. No disability-rights organizations or independent-living centers. No sense of a shared, group identity disability-wise, except perhaps for disabled veterans. Any notion of the disabled as a class of ordinary citizens, a population worthy of civil rights, is years away. The first Civil Rights Act, passed in July 1964, when I’m nineteen months old—two years before my garage accident—applies almost