The Problem With Down Syndrome: Part 4

What is the problem with Down syndrome?  I have been struggling with this, but I think it is not so much whether there is a problem (there’s not), but the drive behind the creation of a “problem” label.  It is not, in and of itself, anything but a genetic condition.  Just like anyone who lives on this earth, health outcomes are wide and varied.  Most will have an intellectual disability and many get hung up on that.  I see no inherent problem with intellectual disability, however.  Intellectual disability has no guaranteed bearing on quality of life, as far as I can see.  Some people live happy lives, some people don’t, intellectual disability or not.

So what is the problem?

Why is Down syndrome itself such a problem that its erasure is such a dire need?  Go look at some of the comments in the news articles and one could think that existence of Down syndrome has the economy teetering on the brink while dooming individuals and families to tragic, depressing lives. Nothing could be further from the truth. Honestly, it gives me a nauseous feeling.  I’m all for treating medical conditions, but there’s nothing to “cure” with a genetic existence.  The way a person’s genes will turn off, turn on, react together and change (yes, that all happens, look up epigenetics) is variable with the environment.  Down syndrome is mode for existing.  Nothing more, nothing less.

I can’t accept that Down syndrome is a “less than”, because I’m then compelled to label a “greater than”. What would constitute this better, ideal existence?  Being tall?  Being white?  An IQ of over 100?  Man?  Woman?  Two arms and two legs?  What would be moderately acceptable?  Would a person with mosaic Down syndrome be acceptable, or would we abide by a genetic “One-Drop Rule”?  Perhaps obesity is ok, but diabetes is not.  Perhaps being nearsighted is ok, but being blind is not.  Math and language required, but musicality optional?

Hitler had some ideas on this topic.  Hitler took Neitzsche’s idea of the Übermensch and applied it racially, insisting that the Aryan race was superior to all else.  I won’t go into the details of the logic, as I am assuming that anyone reading this blog is firmly of the opinion that what  happened in Nazi Germany was one of the sickest chapters in our human history.  (If not, please move along now.  Go on.  Shoo.)

Just like my “less than” versus “greater than” quandary, insisting that a genetic master race exists has one also feeling compelled to label its opposite.  Thus was created the idea of an “untermensch”–translating literally as “under person”, or subhuman.  One was not subhuman simply for being Jewish.  Homosexuality, lower IQ score, and many other things were reasons to be killed or forcibly sterilized.  Remember, the ultimate goal was the extermination of these perceived inferior existences, for the greater good. Disabled people, specifically, were considered useless eaters.

While I’m not suggesting that this new scientific research is going to create the next Holocaust, I am suggesting that the logical underpinnings of the discussion following it are disturbingly similar.

Down syndrome does not predicate a less than ideal life.  Moreover, the definition of an ideal life is very much up for debate.  The hope of this research should be to create healthier, vibrant lives, Down syndrome or not.  “Curing” Down syndrome would not eradicate a single medical issue associated with the syndrome.  Instead, we would be systematically trying to erase a difference that is very difficult to even define.  If we agree that Down syndrome must go, where will we draw the line?  Where will we decide to stop?

Aldous Huxley wrote A Brave New World over eighty years ago, but the book rings eerily true now.  A world without Down syndrome seems closer to utopia for so many, but the relentless negative discussion I see around this new Down syndrome research conjures more of Huxley’s “negative utopia” for me.

We are so obsessed with worshiping at the altar of an ideal existence that we are willing to stratify our very existences.  The problem with Down syndrome is that our world so desperately insists that there needs to be a problem.

You can read the first, second, and third parts of this long ramble as well.  I’m done now.  I’m open to hearing other opinions.  Let’s talk.

11 Comments on “The Problem With Down Syndrome: Part 4”

  1. momshieb says:

    I was discussing this topic with my husband last night, as I was telling him about your blog. It reminds me very much of similar feelings and thoughts that were raised in the deaf community fifteen or twenty years ago when cochlear implants were introduced and true deafness was all but eliminated. I wonder if you might find it useful to read some of that discussion? As a speech/language pathologist, I was privy to some very personal and very troubled conversations about whether or not “deafness” needed to be cured.
    And that quote by Aldous Huxley is wonderful. I’m putting it on my classroom wall this year.

    • jisun says:

      Yes, I think about the Deaf community a lot because of their further history of activism. I see that most separate physical abs intellectual disability, but I question it. I do want to read more. I also want to hear more about your teaching experiences, those are some of my favorite posts of yours!

  2. Galit says:

    Hah! We keep doing this, you and me – we keep saying the same thing from opposite points of view:

    I don’t think that we really disagree in the practical sense. I think we just have different philosophical underpinnings. I hope you don’t hate me…

    • jisun says:

      Ha. OK I don’t hate you but I do think we agree and I wouldn’t say we end up in the same place. I need to read again but will leave a comment on your post. But no, never hate here. Disagreement, but never hate. :)

  3. Mardra says:

    This whole thing is so hard to face. It’s hard to make the words come out, when the concepts involved are complex and for some, emotional. You do a fine job. Thank you for it.

  4. Lisa says:

    I am moved by everything you’ve written on this topic, as you so eloquently and rationally express my own thoughts.

  5. Jaime says:

    I always feel like my views align so much with what you are saying. Wish I could express my feelings as freely and openly as you do. I was just thinking today about how much it bothers me that people dehumanize people with disabilities (both physical and intellectual) by thinking that they are innately innocent and free of “sin.”

    • jisun says:

      I’m sad that you don’t feel like you can express yourself openly. Yes, the duality bothers me as well, you’re either a subhuman animal, or a superhuman angel. Funny to find myself advocating for my son’s right to sin! Life takes us in unexpected places.

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