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

Writing

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.

Everyone must have a personal answer to the question of what life’s all about, but maybe as a culture we can come up with some new, less exclusive and materialistic values. I might be a bit of an idealist but I think it is possible. Maybe we can value people simply because they are people and not because of what they are able to achieve. Maybe we can encourage authenticity. Respect diversity. Ease suffering. Embrace difference.

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6 thoughts on “What’s It All About? Thoughts on Disability, Difference, and Dissatisfaction

  1. Imagine my surprise at seeing my name peppered throughout such a wonderful, thought-provoking post, Erin!

    I really, really like what you’re saying here. I’ve been pondering all of this even more lately, too, and thinking about the relationship between self-determination, ability/disability, achievement, etc. My thoughts haven’t completely gelled yet, but I wonder what our kids would want for themselves if given the choice. I mean, obviously, as parents, we have to make kids do a lot of things they’d rather not do for their own good – like brushing their teeth and eating their vegetables. But when we start talking about interventions like speech therapy for the speech delayed child, or even flashcards for the “typical” preschooler – we do those things because it’s “for their own good.” Would they choose those things for themselves, though? I think it’s all tied up in our own ideas, like you say, about what constitutes a meaningful, worthwhile existence. Do those things actually make the child’s life better? Or have we just talked ourselves into believing that based on our own ideas of success and achievement?

    I wonder, too, how many adults with disabilities who had childhoods filled with therapies and interventions look back and feel glad that they received all those therapies and interventions.

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    1. Oh, I am so interested in what adults with disabilities have to say about all this! I wish we could hear their voices more often in this discourse, and I have wished many times I could hear their thoughts about therapies (I know there is some stuff out there on the internet but it takes some digging through message boards and such). It’s so hard to make certain decisions for young children who can’t really weigh in yet. I think it’s becoming more popular to hear from adults with autism in particular (thanks in part to Temple Grandin’s relative fame probably) but a lot of those people grew up in a time before early intervention and therapy were prevalent.

      I just know that I look at my son, who has some communication issues – I don’t blog about that much because I feel like he is too young for me to tie him up with a bow publicly on my blog – and I just see a kid who is doing pretty well in life, all things considered. I am open to changing my tune in the future if he has specific challenges that are causing him unhappiness, but I don’t want to throw a bunch of therapies at him to “fix” who he is when he is perfectly fine being who he is. I loved what you said in your piece about wanting to spend your energy on getting the world to be more accepting of your son rather than on trying to make him fit in better.

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  2. We need idealists. Idealists dive head first into areas that “feel” wrong. I think that all individuals are born with a strong sense of justice. How often have my children said, “it’s not fair!” Is justice an emotion? Or does it stem from compassion, pity, outrage, and/or joy? These are some of the things I think about. Would I love my typically developing child less if he or she had an accident that utterly changed him/her? That’s what I think about so much. The idea that to “escape” a child’s disability means that it’s home free from then on. None of us know how our lives will unfold. To have a compassionate world that embraces all individuals can only be good for all of us. Here’s to idealists!

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    1. Thanks Theresa! That’s how I feel, deep down. But when I think that way I sometimes imagine how people might say I am being unrealistic and not living in the “real world” where it’s dog-eat-dog, etc. I just can’t give up on the idea that we as human beings can do better, be more compassionate, and that raising children with that mindset is one way to participate in making it a better world.

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  3. How appropriate that I FINALLY had time to read this today – just went to a session on working with students who have disabilities today and it was reiterated over and over again that disabilities are a DIFFERENCE, not a deficiency. And that most of the problems that people with disabilities face are as a result of the way society treats them and operates.

    I don’t have any fully formed coherent thoughts on this (or really, any) subject right now but it is something I think about often. I remember when I was considering doing the NT scan or whatever, or the quad screen during pregnancy and was leaning against it – and the midwife rightly pointed out that a “disability” can come at ANY time – as her teenager had just been diagnosed with bipolar disorder. And you adjust and you deal with it.

    The topic of the need for preparation and extreme success is one I think about often too – as we debate “real” preschool for Annie next year and I am totally of the thought that she is FINE and does not need anything more than she has but then everyone else seems to do it so should we? I lean toward no mostly out of pure laziness and cheapness, but also because I do think that the need to achieve so so so early is ridiculous. I think it stems from having a lot of interactions with the truly “gifted” with several friends, and they are some of the most unhappy people I have ever met, and of everyone I know are the ones now (at 30) who are still so wholly unsatisfied with their life – even as Harvard educated (truly) as they are. All the brilliance and preparation in the world does not make you appreciative or give you the ability to just be happy with who you are and what you are doing right now, it turns out.

    Anyway, I have to sleep now but this was a great, thought-provoking post and I loved reading it.

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    1. Thanks Erin! You make excellent points. And I totally understand that feeling – when all the other parents seem to be doing X, including parents you respect and like, it can make you question your own instincts.

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