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Want to Know Why I’m Obsessed With Educational Equity? Meet My Disabled Son.

Want to Know Why I’m Obsessed With Educational Equity? Meet My Disabled Son._5fbec02b344b9.jpeg
2016 Presidential Elections Accountability Association of University Centers on Disabilities Common Core State Standards (CCSS) Disability Month Disability Rights Education and Defense Fund ESSA Every Student Succeeds Act Laura Waters Leadership Conference on Civil and Human Rights National Disability Rights Network Opt-Out standardized tests students with disabilities

Want to Know Why I’m Obsessed With Educational Equity? Meet My Disabled Son.

Want to Know Why I’m Obsessed With Educational Equity? Meet My Disabled Son.

Here’s Donald Trump, America’s likely Republican presidential nominee, describing his vision of the federal role in public education:

I’m not cutting services, but I’m cutting spending. But I may cut Department of Education. I believe Common Core is a very bad thing. I believe that we should be—you know, educating our children from Iowa, from New Hampshire, from South Carolina, from California, from New York. I think that it should be local education.

His perspective—shared by, apparently, millions of Americans on both sides of the aisle—is worth unpacking because March is Disability Awareness Month.

First, full disclosure. My husband Dennis and I are the parents of Jonah, a handsome, funny and delightful 20-year-old with multiple disabilities. Jonah has a genetic mutation called Fragile X Syndrome which can cause a constellation of impairments, particularly in males (who, unlike females, don’t have a compensatory backup X chromosome.) Hence, my sweet son is “cognitively impaired” or “developmentally disabled” or whatever politically-correct descriptor you prefer. Nowadays you don’t say “retarded” because someone would call the language police and that word, when not used as a slur, means “slow” and connotes that one day you’ll catch up. Jonah never will catch up with his neuro-typical peers and, barring some miracle, never will live independently.

As one of our other children says, both wryly and fondly, “Jonah is the gift that keeps on taking.”

Sometimes people wonder why I’m so consumed with issues around educational equity, school choice, standards, accountability and the need for a strong federal role in education. Jonah’s not the complete answer to that question, but he’s part of it. Given this month’s designation, let’s look at what Jonah’s educational trajectory would look like without the heft of what Donald Trump, Ted Cruz and other champions of local control (which doesn’t exclude Democratic contenders) would so blithely eliminate.

Jonah’s Story

Jonah was born in 1995 but if he was born a generation ago, before the 1975 passage of the Individuals with Disabilities Education Act (IDEA), he would have had no federal right to public education.

States can’t, as they once did, ban children like Jonah from school. In fact, children with disabilities are guaranteed a “free appropriate public education” in the “least restrictive environment.” In 2004, when Jonah was 8-years-old, IDEA was aligned with No Child Left Behind (NCLB) and his rights were expanded to include highly-qualified teachers, annual data-based assessments and state sanctions if his cohort didn’t make adequate yearly progress.

In other words, Jonah’s development—and in spite of his diagnosis he has outstripped most dire prognostications—must be objectively measured. There’s no, “well, he’s cognitively-challenged so he’ll never learn how to read” (actually, he reads at a sixth-grade level). And no, “well, he has loose ligaments from Fragile X so he’ll never have good fine motor skills” (I defer to him on all technological household problems). Or my personal favorite: “I think you have to prepare yourself for the likelihood that he’ll be nonverbal” (Try to shut the kid up!).

His educational program, by weight of federal law, must be unlinked from preconception and prejudice.

And that’s why the National Disability Rights Network, Disability Rights Education and Defense Fund, and Association of University Centers on Disabilities linked arms with the nation’s major civil rights groups to demand that the new version of NCLB, the Every Student Succeeds Act, include annual standardized assessments to measure student progress and that state compliance be overseen by the strong arm of the U.S. Department of Education.

The Leadership Conference on Civil and Human Rights, which includes disability groups, describes why testing is so important:

Standardized tests, as “high stakes tests,” have been misused over time to deny opportunity and undermine the educational purpose of schools, actions we have never supported and will never condone. But the anti-testing efforts that appear to be growing in states across the nation, like in Colorado and New York, would sabotage important data and rob us of the right to know how our students are faring.

When parents “opt out” of tests—even when out of protest for legitimate concerns—they’re not only making a choice for their own child, they’re inadvertently making a choice to undermine efforts to improve schools for every child.

This is one reason among many why I respond so viscerally to demands by not only Trump and Cruz, but, sadly even the National Education Association and the American Federation of Teachers, to weaken federal oversight and rely on local control to secure rights for historically disenfranchised children like those of color, those in poverty, and those with disabilities.

That’s why I’m so enraged by the “opt-out” movement, which does indeed “undermine efforts to improve schools for every child.” Without the threat of federal intervention, Jonah’s educational rights would be relegated to local political whims. Without federal requirements for objective annual data collection, our son’s once-latent abilities would be subjugated to prejudicial subjectivity.

So, as Annual Disability Month draws to a close, I wonder whether die-hard local control advocates would reevaluate their antipathy towards federal oversight and their embrace of local control if they were parents of a child like Jonah. If politics is even partially personal, I’d think that they would.

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