Tuesday, July 13, 2010

Part 4 of "Miracle Boy"

The picture is irrelevant. It's Microsoft's clipart. But I figured I needed some illustration here, and it might as well be one that could draw in a few curious readers. (I considered uploading nude photos, but I didn't want to pander!)

Anyway, here's the next installment of "Miracle Boy" Grows Up...

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 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 seatbelt, 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 seatbelt. 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 19 months old—two years before my garage accident—applies almost exclusively to Blacks, of course. It never occurs to anyone, let alone my parents, to extend antidiscrimination and equal opportunity to people with disabilities. Not like in the early 21st century, when we know that some 51 million Americans—or 18 percent of the population—have a disability, making us the single largest minority. The percentage of disabled Americans in the 1960s is probably smaller, though, because medicine and technology aren't yet doing such a good job of keeping us alive.

Medicine aside, to survive with a disability involves equal doses of toughness, pluck, and grit mixed with humor, a stiff upper lip, love, luck and money. In those days, and perhaps still today, you'd best follow the Franklin Roosevelt model: Hide the handicap and its apparatus as much as possible. Minimize them. If and when they slip out, simply flash a winning grin. Use your limitation as a sign of strength and courage, not sorrow, shock or loss. An emblem of overcoming, of achieving despite all.

Or is that best?


1 comment:

  1. Thanks for these posts, Ben -- I am enjoying reading them and like the blend of memoir/historical data.