My Worlds Converge: A Personal Story About My Son, My Sister, Disabilities, and The Contraction of Education Reform.

Tomorrow is the Ides of National Disabilities Month, but in my family we observe this designation every day.  Our fourth child, Jonah, has Fragile X Syndrome, a genetic mutation that can cause (as it does in our son’s case) a constellation of symptoms including global developmental delays and autistic-like behaviors. My sister is afflicted by both physical disabilities and psychological disorders; as the only other surviving member of our original family (none of whom died of natural causes) I feel responsible for her.

In other words, my life is saturated by disabilities. Heck, I’m a wet blanket. I’d cut off my arm (hey — take two!) to repair Jonah’s dysfunctional X chromosome. While he brings us so much joy — and, in fact, is just a joyful person —  there’s a never-ending grieving process when raising a child with significant special needs. As for my sister, it’s a long schlep from Central New Jersey to her apartment on the Upper West Side (NJ Transit, the Number 1 train at Penn Station, the walk uptown from the 72nd St. subway). I wish she needed me less. I wish she’d recover her amazingly high-functioning self (she has a Ph.D. in biostatistics) but the odds are slim.  Her decline makes me quite sad.

I don’t, however, feel sad about the state and federal governing that affects my family. I’m just plain furious. Why? I’m sick of everyone in Washington and elsewhere who is moronically attracted to America’s political contractions, whether it be through the machinations of the monomaniacal orangeman currently in the Oval Office or the AOC’s of the capitol who seize on litmus tests for “progressive” purity. Either way, our nation gets smaller, the constituencies shrink, the world divides. The best lack all conviction while the worst are full of passionate intensity.

Our most vulnerable citizens suffer.

And my worlds converge.

My other role, besides as a caregiver, is in the world of education reform because I write for Education Post. As Rick Hess and Jay Greene note, those committed to repairing our broken public education system once hailed from diverse political views (mostly centrist, actually). But recently the movement has taken  “a hard left turn” which undermines the quality and effectiveness of all advocates. They write,

Political homogeneity helps explain many of the setbacks the reform movement has suffered in recent years, including the collapse of Common Core, the abandonment of new teacher evaluation methods, and a national stall in the expansion of charter schools. It is losing its ability to forge new coalitions and find new converts. Those who care about the effectiveness of K-12 education should think about ways to inject some red—or at least purple—into a movement that has become monochromatically blue.

We can’t provide for people who need us most when we color ourselves crimson or cerulean. We have to color ourselves a more inclusive and moderate purple (says this lifelong Democrat, a New York Jew, no less), whether we’re talking about the world of disabilities or the world of education reform. That’s because my boy and my sister are utterly dependent on our ability as a nation to expand, not contract, to be careful stewards, to be accountable, to throw out the pup tent and let everyone in, to just care.

I care. My husband cares. My children care. My extended family cares.

That’s not enough. It won’t do it. It just won’t get the job done.

Maybe this partisan imbalance, this polarization, this contraction of our major political parties can work for you lucky neuro-typical people out there,  but not for someone like Jonah, who needs a functional day program — hey, how about a supportive work environment? — and a roof over his head and someone to supply meals and someone to pay the bills. (And shave him. And help him brush his teeth. And, well, you get the idea.)

Jonah needs (along with NJ’s 213,727 other special education students) a functional Student Services Division in the DOE, not the inchoate mess that exists now.

Jonah needs the oversight of the federal government — as well as the cash — to ensure that he gets his entitlements like Medicare and Medicaid. He doesn’t need his representatives proposing extreme positions (looking at both the Dems and the GOP) that are politically and/or fiscally ridiculous. He doesn’t need viral soundbites that generate tons of retweets while undermining collaboration and consensus.

Jonah has no use for ignorant representatives who conflate Zionism with “allegiance to a foreign country” and, tacitly, disloyalty to America.  Jonah can’t afford for us to waste our time on silly  proposals like free universal healthcare or free four-year college. Jonah doesn’t need representatives who disdain school choice that they had access to in order to fire up a fragment of a political party.  He needs a Democratic Party that stops binging on progressivism and starts re-educating itself about how to, as Hess and Greene put it, “forge new coalitions and find new converts.” He needs a Republican Party that can stand up to a president who hasn’t the tiniest understanding of the needs of Jonah and my sister.  

The Economist recently quoted Senator Chris Coons, Democrat of  Delaware: “If we try to out-crazy the policy announcements of a troubled president, we will do nothing to restore confidence.” (The title of this article, by the way, is “The Democratic Primary is Already the Most Left-Wing in Decades: This looks like a bad strategy for beating Donald Trump.”)

Jonah needs our help to expand his comfort zone beyond his iPad and desktop. He needs his world bigger, not smaller. So does education reform.  Forget the litmus tests, the loyalty quizzes, the earnest moralities that deign others too unenlightened to qualify as fellow travelers in this journey.

Let’s expand, not contract.  Otherwise, Jonah and my sister will suffer and the education reform movement will continue to alienate those we need to grow.

 

What do you think?

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