The Gift No One Wants Until They Get It

Shmuley Boteach, the Orthodox Jewish rabbi and author of bestselling books, is perhaps best known as a friend and adviser to the late “King of Pop,” Michael Jackson. He is also currently a Republican candidate for Congress in Bergen County, New Jersey.

This is all to say that he is a man”a religious man, at that”with a voice in the public square. I’ve never read his books, in part because books with titles such as Kosher Sex , Kosher Adultery: Seduce and Sin with your Spouse , and Kosher Jesus don’t often find their way into my Amazon cart.

But I am the father of a child with Down syndrome, so when someone sounds off in the media on that subject, it often finds its way to me and I am almost always interested in reading it. Last week, Rabbi Shmuley published a piece on the Huffington Post with the provocative title, “Why Does G-d Allow Children to Be Born with Disabilities?”

It’s a time-honored question. And I was very interested in his take on some theological differences between the Jewish and Christian traditions:

Whenever Jews witness human suffering, we never accept it, we do not seek to understand it, and we do not explain it away as something lofty and blessed. Indeed, one of the principal differences between Christianity and Judaism is that the former insists that suffering can be redemptive”as when Jesus suffers on the cross to pardon human sin”while the latter insists that suffering is a tragedy without redemptive merit that must be remedied and removed.

Interesting. I never really thought of it that way.

But I found much in Rabbi Shmuley’s piece to take issue with, notably his presumption that those born with developmental or physical disabilities suffer by virtue of their differences. I am not at all at ease with this notion, as it presupposes an objectively “normal” physiological and/or mental state, deviation from which amounts to something akin to pain.

To be sure, there is suffering associated with some disabilities. But can Rabbi Shmuley say with certainty that the disabled suffer more than the non-disabled? Can he say that my daughter, Magdalena, will suffer more in this life by virtue of her disabilities than her “normal” older sister will? Her older sister, after all, will probably be betrayed by a close friend. She will surely end up with a boss who makes her feel like a useless idiot. She may alienate those who love her, and spend a good portion of her life fretting about missed opportunities and poor choices.

Yes, Magdalena will miss out on most of that. Is she worse off because of it? Does Rabbi Shmuley know for sure?

But my gripe with Rabbi Shmuley goes far deeper than merely his inelegant, and perhaps inadvertent, choice of words. If he’d limited his piece to a meditation on religious teachings on disability, I would not feel compelled to respond. But I am compelled to respond. Here’s why. He writes:

Even as we love and cherish every Down-syndrome child, we dare never dignify Down syndrome itself, and I honor all doctors who work tirelessly so that this disease can be purged and children came into the world healthy.

Where to begin? Down syndrome is not a disease. A syndrome”any syndrome”is merely a combination of symptoms or associated characteristics. My daughter is not ill by virtue of having Down syndrome, and saying so is just plain wrong. I could not sit idly by as someone with such a prominent perch in the public square spread misinformation on an issue as dear to my heart as this one. So I Tweeted to Rabbi Shmuley to set him straight. Here’s what I wrote:

“@RabbiShmuley Some interesting things to think about in your HuffPo piece on disability. But 1 thing wrong: Down syndrome is not a disease.”

To which he replied, “My point is it’s not a blessing.”

“You’re wrong @RabbiShmuley,” I wrote back. “Down syndrome is the gift no one wants until they get it.”

I included for him a link to “A Gift Named Magdalena,” a piece I wrote last year. In it, I explained that, “Magdalena isn’t sick. Down syndrome is not a disease; it’s merely a collection of traits, all of which occur, though not all at once, in so-called ‘normal’ people.”

Something tells me he didn’t actually read the piece. His final reply was both dismissive and condescending: “Gift? Seriously?”

If he had read it, he would have been asked to grapple with these questions:

How could a lifetime of likely dependency be a gift? How could impaired cognitive development be a gift? Wouldn’t you think it a gift to live every day with someone who is always happy to see you? Wouldn’t you be grateful to have a child who never judges other people, or insults them, or begrudges them?

Rabbi Shmuley seems like a sharp guy. If I lived in Bergen County I would probably vote for him. But his piece, and our Twitter exchange, indicate that he lacks both empathy and imagination. He may know about the gift of “kosher sex,” but I can assure you he knows next to nothing about the gift of Down syndrome.

Down syndrome is the gift that no one wants until they get it. I know, because my family received it. Don’t listen to anyone who tells you otherwise.

Matthew Hennessey is a writer and editor who lives in New Canaan, CT. You can follow him on Twitter @MattHennessey .

RESOURCES

Shmuley Boteach, Why Does G-d Allow Children to Be Born with Disabilities?

Matthew Hennessey, A Gift Named Magdalena

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