The Problem With Down Syndrome: Part 4Posted: August 9, 2013
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.