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Without further ado, here's the next installment of "Miracle Boy Grows Up: How the Disability-Rights Revolution Saved My Sanity" --
According to government statistics, in 1968 only one in five "handicapped" kids is educated in a public school—usually a separate special-ed school. The majority stays home or gets sent off to live-in institutions. More than a million handicapped kids have no access to the school system at all. Many states have statutes specifically excluding the deaf, blind or mentally retarded from public schooling. This despite the Elementary and Secondary Education Act of 1965, which addressed the need for equity for "educationally deprived children," as President Johnson puts it when he signs it into law. A year later the act is amended to establish a federal Bureau of Education of the Handicapped and, under Title VI, special funding to accommodate handicapped students. This basically fueled special-ed, not inclusion or "mainstreaming" in regular schools. Not until September 26, 1973—when I'm ten years old and starting sixth grade—do handicapped kids begin to gain the right to an integrated, quality education, with passage of the U.S. Rehabilitation Act. Its Section 504 will prohibit discrimination based on disability in educational facilities that receive federal funding. Two years later, the Education for All Handicapped Children Act will put federal money where its mouth is by supporting state efforts to improve schooling for handicapped kids. It will set no clear national standards, however, and follow-through will be slack. So 15 years after that—in 1990, when I'm already out of college for six years—the Individuals with Disabilities Education Act will set terms for full integration in public schools of all kids with disabilities, to the fullest extent possible. Soon some six-million kids with disabilities will attend public schools, receiving specialized services as needed to meet their educational requirements.
Though not held to the same standard, unless they receive federal funds, private schools will gradually try, at least, to follow the example of their public counterparts.
Mom and Dad are way ahead of their time in refusing to have me segregated. In fact, they raise me in isolation from other handicapped kids. Or rather, they protect me from them. I don't want to be around other kids like me anyway, mostly because they are not like me. At least I don't see myself as being like them. I figure if I'm being separated from them, there's got to be a reason. Got to be something wrong with them. They must be spastic, talk funny and drool. I'm certain they dress badly, have choppy haircuts and sometimes smell bad. I don't know for sure because I haven't really been around other handicapped kids, but you kind of pick up impressions.
"Handicapped" is the word my family uses—the polite word, that is, as opposed to "crippled."
Dad is editor of GQ magazine, which he calls Gentleman's Quarterly. Mom worked for the producers of a TV program called Playhouse 90 on CBS before Alec was born. They're modern thinkers. In a time when it's widely accepted that even the best parents can't easily cope with having a handicapped child, or wouldn't want to, Mom and Dad go against the grain. Yet every now and then Mom wonders if the kids who are warehoused in these special-ed ghettos develop a sense of camaraderie, of shared frustration, that I'm missing. She says being with these kids might provide me with an "emotional support system." But I don't want one. I say I don't need a way to deal with being different, with confronting the non-handicapped world around me. I know how to fit in. She says that's terrific and she's proud of me. For her, being properly socialized is half the point of keeping me mainstreamed. "It's important to learn to get along with others, to look nice and behave attractively, if you want to get anywhere in the world."
"I don't make the rules, that's just the way it is. We all have to face it."
Mom has her reasons, beyond vanity. She grew up poor because her father, Grandpa Sam, a Cincinnati defense lawyer, had such an unpleasant manner the only clients he could keep were the most desperate and destitute.
The other reasons she and Dad insist on a regular private school are (1) they know separate isn't equal, (2) they want the best education possible for their kids and (3) they're snobs and only consider the finest schools.
So I start first grade at the Walden School, on West 88th Street.