Part 33 of "Miracle Boy"

Under deadline pressures, so without further ado –

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She says she can see my room out her window, but I don't see hers.

She has a tumor removed from her ovaries. She's forty-three, scared because ovarian cancer is what killed her mother. I'm convinced she's worrying over nothing. She usually does. Mom calls her operation a "procedure." What we don't know is it'll be the first in a long series of procedures.

One afternoon, accompanied by a nurse, Mom drags her I.V. over the bridge connecting the two buildings and visits me in pediatrics. She's weak and pale but tries to be cheerful, and I do too.

We're also unaware that, that same April, disability activists are protesting at federal office buildings in ten major cities. The Rehabilitation Act of 1973 still has not been signed into law, four years after Congress passed it. Specifically, the guidelines necessary to enforce Section 504 of the Act, which bars discrimination against people with disabilities in federally funded programs, haven't been finalized. Without those guidelines, the nation's first disability-rights legislation is rendered meaningless.

Protesters believe newly installed President Carter may be sympathetic to their cause, but so far he's done nothing.

The San Francisco demonstrations are the largest. Scores of activists occupy the local headquarters of the U.S. Department of Health, Education and Welfare, the body responsible for the guidelines. They camp out for twenty-five straight days and nights, sleeping in their wheelchairs or on the floor. They share urinals, catheters and personal-care attendants, bathing in front of each other without shame—most are used to being undressed in front of others.  I know the feeling. 

These activists are inspired by the Black civil-rights movement, of course, but more than that, they have nothing to lose and nothing else to do. They're unemployed or, in many cases, barred from all but a handful of mainstream schools. Having benefited from the latest medical advances, they've survived crippling, once deadly, diseases and accidents to live active lives with the aid of crutches, power wheelchairs, portable ventilators, guide dogs, sign language and other modern marvels. Many don't have their own homes or families to tend to. They feel they've been patient long enough.

At the end of the month the protesters are victorious! Joseph Califano, Carter's H.E.W. secretary, finalizes the regulations and the president signs them into law. A modicum of rights, at last! Power to the people!

It will prove only the first battle of a long war, of an ongoing revolution, but it's one from which I'll personally benefit very soon. For all institutions that receive federal funds are now required to become accessible by 1980. The year I start college.

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