Potential, Disability, and Human Worth

So what is potential?  Is it a bottle that we fill, predestined to be a certain size at birth?  Is it a balloon that stretches and deflates according to our circumstances?  What, specifically, are we discussing here?  Potential for what?  Happiness?  Wealth?  Influence?  Raw ability?  What kind of ability?

I hear a lot of talk about potential.  I want my baby to develop to his full potential.  One of the reasons I was anxious about LP’s sleep apnea and his thyroid was that both conditions, left untreated, carry the very real possibility of causing permanent brain damage.  I’ll be honest here and admit that one of the hardest parts about hearing the words Down syndrome was the idea of my child having an intellectual disability.  So the idea of him having somehow more intellectual disability due to untreated health conditions freaked me out.  The future, his potential, loomed out in front of me, constricting, because I worried that he was losing something he could have had.  Lost potential.

I was wrong.

We live in an ableist world that defines potential against arbitrary values that change over time and context.  A person in a wheelchair is only disabled because the majority of the world uses two legs to get around.  A person who is intellectually disabled is only disabled because the majority of our society values certain cognitive skills and learning styles over others.  A person who is blind is only disabled because the majority of society relies heavily on their sight.  What modern day societies view as important is how we create our society.  Our roads, schools, buildings, are all created with this in mind.

Judging another human’s potential through the lens of their disability is not only a futile exercise, but it creates a hierarchy of worth.

It is dangerous.

This is why new prenatal tests are a vehicle for eugenics, under the guise of medical care.  This is why Ethan Saylor’s death was so tragically uncontroversial.  He was judged as already so limited in his potential due to his genetic makeup that his death was worth less scrutiny than another’s.  This is why parents fight to get their children included in the public school system; children with disabilities are seen as having less potential, less worth, just less.  Adults struggle against an employment system that believes their work is worth less than that of their non-disabled counterparts.

If most of us had one arm and were not neurologically wired to do math, the world would have developed to favor those characteristics.  Disability and a person’s potential are defined by the world’s ability to interact meaningfully with them, and not the other way around.  Potential is simply a mirror, reflecting the world’s biases, but having nothing to do with an individual himself.

So let’s stop drawing lines.  We are all disabled, we are all abled.  We are all different, we are all typical.  Let’s include each life into the web our collective potential, simply because we value human life.  No one is born with a smaller bottle or balloon.  Potential is potential, simply by living, no matter how we are born or how our life’s events unfold.  We are all infinite by our very existence.

***I can’t take all the credit for this post.  This here wonderful mama helped me find clarity on this issue while I was wading through my muddy thoughts all week.
***…and I also need to say that this post came after discussing the idea of potential at this blog here. Please accept my applies for not linking right away!

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19 Comments on “Potential, Disability, and Human Worth”

  1. I really dislike the whole ‘full potential’ thing. I don’t know anyone that lives up to their full potential.

  2. Stephanie says:

    BAM! That was awesome. I love you!

  3. Andrea Dunning says:

    I felt equally freaked out when my poor Ds 4m/o (now 6m/o) son, Gavin, began having infantile spasms! if they were the harmful ones, instead of the benign ones, they can cause cerebral palsy and brain damage. I was terrified that he could be robbed of what limited cognitive ability he was born with. I had to come to grips with his situation too and realize that we can only do so much with modern medicine, but whatever his cognitive ability ends up to be does not diminish his worth, or how important he is to our family. Thanks for sharing!

  4. I’ve been thinking about this very thing, as well Couldn’t find the words, though. I like yours, I remember thinking along these lines when Charles was an infant and he would not nurse, I kept thinking that he really, really needed that breast milk, After pumping for four months, I gave up and felt like I had failed him. I kept thinking “HE NEEDS THOSE 5 IQ POINTS!”, which, at the time was what they were saying was the difference between a breastfed child and a formula child. It was silly, wasted worry. He’s lived up to his potential as an awesome kid. That’s enough. :)

    • jisun says:

      “He’s lived up to his potential as an awesome kid. That’s enough.”

      Plus, IQ test… what a mind f*ck we invented with that test. Jeez.

  5. Galit says:

    Very well written! You certainly gave me a lot to think about:
    http://matir-asurim.blogspot.com/2013/06/more-about-potential.html

    • jisun says:

      Ok, so what is it like watching me discover all the stuff that you’ve already BTDT??? You’re very patient while you watch me work it all out on this blog, friend. :)

      • Lisa says:

        I think you’re coming to a lot of this stuff sooner than I did! I think you’re very wise, and I enjoy reading the things you express.

  6. Lyn says:

    Such clarity in you words.

  7. “The flowers seemed like servants, ready to follow my sister into death, bound by the shortening of their own lives.” That is a beautiful sentence, Jisun, and captures the hard emotion of the scene.

    Are you familiar with the Jizo Bodhisattva? They are the Buddhist guardians of women, infants, children and those at life’s crossroads. The Zennies use them in ceremonies for children and there is a sweetness about them. The loss of a child is more poignant because it is not the natural order of things, parents burying children. But you cannot live in that place and must come to see, as you point out, that it is what it is.

    After four boys, my Lyra was born with Ds. A few days later, and the only time really, I wept for all the things I had anticipated in having a daughter that I felt I would not have because of her Ds. And then I went through the list:
    -Shopping? who says she won’t, but more importantly, I don’t like to go shopping!

    -Wedding? I’m not a big fan of expensive weddings. I don’t think about my sons’ weddings, why a daughter’s? And then I saw “Monica & David” and realized again, who says she won’t?

    -That special bond that only a mother and daughter have because, as the saying goes, “A son is your son until he takes a wife, a daughter’s your daughter all of your life.” Well, my boys don’t seem like they’ll be going anywhere far, especially emotionally. And now that she’s nearly a year old, I’m not worried that Lyra and I won’t have exactly the relationship we both need most.

    Of course. I graze on this a little with my own post today: http://whoopsiepiggle.wordpress.com/2013/06/27/lyras-latest-baby-doll-to-baby/


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