What's It All About? Thoughts on Disability, Difference, and Dissatisfaction

"We spend nearly every minute wanting things to be a little bit different, a little bit better. Even now, reading this, you might be thinking defensively: But I only want what’s best.

We call it wanting the “best.” We say we want “advantages” for our children. We say we are “enriching” their environment and “exposing” them to more “opportunities.” That’s all well and good, but what do we mean when we say that? Do we mean that we want them to turn out smarter? More talented? More popular? More attractive? More admired? More successful? More accomplished? With more status and money? Yes! We mean all of that and more! To what end? To serve whom? To serve ourselves? So we can be satisfied? We won’t be satisfied then unless we know how to be satisfied now.

What do we mean by all these things we want “for our children?” All these things we think they “need?” Whatever they are, and however, we acquire these things, the fact remains: desires are inexhaustible. Chasing them, however, will exhaust you. It will frustrate you. It will cause worry and anxiety, grumbling and dissatisfaction. It will disrupt your home and impose expectations on those around you. It will cost you money, and it will cost you time, all the while distracting you from your life, bountiful and precious, right in front of you.

- Karen Maezen Miller, Momma Zen: Walking the Crooked Path of Motherhood

I recently shared on Facebook a guest post by one of the bloggers I read regularly: Lisa Morguess’s “On the Possibility of Curing Down Syndrome.” In it Lisa talks about her thoughts on emerging technology that could potentially “cure” Down Syndrome by shutting down the extra copy of the 21st chromosome (this, in case you didn’t know, is what Down Syndrome is – an extra copy of that particular chromosome). At the crux of her position is this: “What bothers me about the question of whether I would change the fact that my son has Down syndrome that it’s just another example of how we value people based on arbitrary standards, like intelligence and achievement and performance.”

When I posted this, another friend commented to share a TED Talk by Andrew Solomon (and by the way Lisa has blogged about Solomon’s book too which made watching this talk a little weird for me knowing that Lisa did not find him to be all that diversity-friendly, but that’s a side note) in which he talks about the tension between new science that can or will allow us to prevent, treat, and cure disabilities and the growing social acceptance of people with disabilities.

In it, Solomon quotes Jim Sinclair, an autistic adult who co-founded Autism Network International: “Therefore, when parents say, I wish my child did not have autism, what they’re really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead. Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.”

This is a powerful message that shouldn’t be brushed aside: when you try to fix us, we feel that you want to erase us. I can’t pretend to know a lot about disability or how people with disabilities feel, but Sinclair’s statement reverberates within me. It seems to me that a lot of the disability in disability stems from the rest of us – mainstream, able-bodied, neurotypical people – refusing to make room for other ways of being.

Andrew Solomon compares disability to homosexuality in his talk, in the sense that gayness also used to be considered a condition or mental illness that should be treated and cured. I too thought of this comparison when I was reading Lisa’s essay. If we discovered a way to shut off the genes that make a person gay while still in utero, would people do that? Would we allow it? How is that different from shutting down Down Syndrome, or autism, or (to use some other disabilities that Solomon has researched) deafness or Dwarfism?

The question at the heart of all of this is not a small one. It’s the Big Question, really: What is the meaning of life? I don’t think many people would come right out and say that the meaning of life is living independently, finding gainful employment, choosing a life partner and reproducing, but these seem to be our unspoken assumptions about what makes a life meaningful. These are little more than American conventions and yet they are the goals that we drive people towards with great intensity and anxiety from the moment those little people are born without really ever explicitly asking ourselves what we truly value. Whether it’s Early Intervention for the toddler who doesn’t speak or working on literacy with your preschooler so that he’ll enter kindergarten ready to read – I think we have to stop and take a moment to ask ourselves what it’s all about.

This is why I put the quote from Karen Maezen Miller (author, mother, and Buddhist priest) at the top of this post. It seems to me that the desperation to give our children head starts and to “intervene” in the development of young toddlers and even to “cure” disabilities all arise from this same, fearful, inexhaustible desire to make everything better, different, to maximize potential, to do what’s BEST with really no clue what “best” even means or whether it’s something worth achieving.

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