A few days later I got back on my bicycle and rode across the Charles River into Boston and on down to the headquarters of the Federation for Children With Special Needs. There I spoke with another old friend of mine, Rich Robison, the federation's executive director. Nearly 20 years earlier Rich and I had met in a support group for fathers of children with disabilities. At that time Rich was the pastor of the First Baptist Church in the working-class neighborhood of South Gardner, Mass.

Rich left full-time ministry long ago and has been a full-time disability rights advocate for 15 years -- a dozen or so within the Massachusetts Department of Mental Retardation, and the last few at the federation. Two of his (and wife Dottie's) three children have Down Syndrome; one of their differently abled children is adopted. Down Syndrome is caused by extra genetic material on the 21st chromosome.

He had been considering leaving his ministerial post in Gardner for some while, he once confided to me. The turning point came when a member of a prayer group of which he was a member began to offer a prayer that his two children who had Down Syndrome be cured of their affliction. "Wait, wait," the minister interrupted. "Do you know what Down Syndrome is? Do you know what chromosomes are? I'm not going to pray that my children be reinvented on the fly." He later found out that this same person had surreptitiously anointed one of his children with oil, Old Testament-style. Soon thereafter, the Rev. Robison submitted his resignation. (He still is a part-time minister at a church in Boston's Jamaica Plain neighborhood.)

The Federation for Children With Special Needs is an umbrella organization that brings together dozens of groups organized around the needs of children with specific concerns. One of its founders is a powerhouse named Betsy Anderson. Her relentless and at times ferocious advocacy -- and her organizational skill -- resulted in the passage of Massachusetts' sweeping overhaul of special education law, known as Chapter 766, which mandated that students with special needs be given education to achieve "maximum feasible benefit" (MFB).

Massachusetts law, in turn, provided the model for the federal law which is, in its own way, the moral equivalent of Brown vs. Board of Education. Chapter 766 has been resisted since its passage, of course, and recently MFB has been scaled back to the lower federal standard of "free and appropriate public education." But it has given an entire generation of parents across the country a fulcrum, at least, with which to budge the apelike ablist pecking order that had hitherto confined their children to imprisonment in basements and storage rooms instead of giving them an education.

The Federation for Children With Special Needs, and Betsy Anderson herself, had been instrumental not only in helping my wife and me learn how to promote our child's interests, but also in our becoming militants. It wasn't just that the federation (often Betsy herself) gave us advice over the phone; it wasn't just that the federation's handbooks gave step-by-step instruction in how to do judo with school systems and HMOs. Rather, Betsy and the federation were the proverbial revolutionary vanguard. They transformed our consciousness.

Before going to meet Rich at his federation office, I happened to read a paper by Eric Parens and Adrienne Arch that had been included in one of the heavy binders that Withers gave me at the Whitehead. It was called "The Disability Rights Critique of Prenatal Genetic Testing."

This closely argued, heavily footnoted, 22-page article examines the proposition, asserted by a militant wing of the disability rights movement, that prenatal genetic testing should be abolished because it changes the status of people with disability, inherently establishing their own instantiation of humanity as pathological; because it reinforces stereotypes and bigotry, causing people with nonstandard DNA to be identified with their phenotype in a way that people with standard DNA are not; because it endangers disabled people by subjecting them to backlash at their ever having been born; because it perverts the nature of the parent-child relationship, causing children to be regarded as accessories to fit into their parents' preferred lifestyle, rather than as autonomous persons to whom parents have a nonnegotiable and inviolable responsibility.

I asked Rich about the "backlash" argument against prenatal testing: that as more information became available about prenatal detection of abnormalities, there would be a backlash against parents who didn't choose abortion. I knew, of course, that people resent paying taxes for special education. Had the nature of this resentment changed with advances in genetic research?

Rich laughed. "Without a doubt," he said. "You wouldn't believe how shameless people have become. They stand up in town meetings when people are voting on school budgets and point their fingers at the parents who betrayed their neighbors by not doing the right thing." According to Robison, after years of hard-won progress in the battle for civil rights of people born with disabilities, the federation is now fighting hard just to preserve the status quo. The cost of educating a child with an "expensive" condition is increasingly seen not as a stroke of fate to be addressed by the community, like a house afire, but as an unfair burden imposed by profligate and sentimental parents on their tax-oppressed fellow citizens.

So I asked him if he had paid any attention to the Human Genome Project, and whether he saw a connection between it and a resurgent eugenics movement. "Oh sure," he said, and we talked a while about that. His opinion was that genetics research in itself was not the point of his concern, but whether society should be normalized to accommodate individuals with different abilities, or whether individuals who did not conform to norms would be devalued. His concerns were pragmatic; for the philosophy he suggested that I chat with Betsy. We'll come back to that.

Recent Stories