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Thursday, 3 May 2012

Rabbi Boteach and Children With Disabilities...Revisited

So, my friend Geoff (name changed) and I have been having a Facebook debate on the Rabbi Boteach blog on why God allows children to be born with disabilities. Here's the blog in question:


Geoff and I often debate American politics. You'd expect that it would come to blows more often than it does, him being a staunch Conservative and me being a bleeding heart Liberal. However, we find that often our beliefs match, more or less, on the basics of many things.  How we've arrived at those beliefs is often a different story.

We debated the Rabbi Boteach blog the way we do American politics - calmly and respectfully (well, we debate that way most of the time, anyway). And, as usual, I think each of us made the other do some thinking.

Debating Rabbi Boteach

Geoff said that he couldn't understand why I had problem with doctors working to cure disabilities. I don't. I'm not against researchers working to find cures for conditions that cause disabilities or interventions that improve quality of life.  I do have a problem with the blanket assumption in the Rabbi Boteach blog that disability = suffering, and therefore must be eliminated. Certainly some forms of disability are very painful and very isolating and cause a great deal of suffering...but I'm not suffering. My friend Martyn, who has spinal muscular atrophy, uses a wheelchair, and can't lift much more than a 1-litre bottle is having the time of his life doing humanitarian work in Spain right now. There are plenty of people who have severe hearing impairments and reject the cochlear implant and any improvement it could offer, for various reasons.


"The idea that difference must always equal suffering and a yearning to be "normal" is ablist thinking," I said to Geoff, which he appeared to understand. But he was concerned that I misunderstood the Rabbi's desire that researchers find cures with a desire to *force* cures on people afflicted with disabilities.

I do think I came away from the Rabbi's blog with that impression, but I really had to think about why. I think it was his use of the word "purge" when he was talking about Down's Syndrome.  "Purge" is such an emotionally loaded word for me that that seeing it used in relation to Down's Syndrome had really set me off, quite frankly. In my world, you purge to get rid of things that disgust you, that you don't want near you, that you want no part in your life. I've never felt that way about Down's Syndrome or anyone in my life who's had it. I'd rather "purge" the attitudes that make my friends with Down's Syndrome or any other disability feel excluded, unsafe, or just generally like second-class citizens in their own towns, states/provinces, and countries.

But Geoff always encourages me to read carefully and monitor whether my emotions are getting the better of me when I'm reading, lest I miss the whole story.  I went back and read the Rabbi Boteach blog again and saw Geoff's point that Rabbi Boteach was answering the question about children and disabilities from several vantage point: theologian, counselor to parents who'd just found out that their child would be born with Down's Syndrome, and as a refuter to the argument about children with disabilities being advanced souls in sinless bodies. He'd always came back to the idea that children with disabilities are precious and worthy of life, and he eventually hit the points on which he and I agreed: That children with disabilities are no more or less "divine" than any other children, and that we need to find ways to rally both natural and agency supports around children with disabilities and their families to give them as fulfilling a life as possible.

And for someone that believes those things and is willing to work for them...I can overlook the other stuff that didn't sit quite right. I apologize to Rabbi Boteach for any of my knee-jerk reactions to his wording that might have caused me to misunderstand the rest of his message.

And thanks, Geoff, for helping me get on track again. :)

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