My Suspicions About “Curing” Down Syndrome

This week is the final week of Down syndrome Awareness Month, and therefore the final week of posts addressing the question of whether we should try to “cure” Down syndrome. Today we hear from Alison Piepmeier, Professor of Women and Gender Studies at the College of Charleston and mother of Maybelle. Tomorrow we hear from John Swinton, Professor of Theology at the University of Aberdeen. On Thursday, you’ll get my thoughts once more–on how this discussion has challenged, supported, and changed the way I think. I hope you’ll offer your own perspectives as well. For now, here’s Alison Piepmeier:

I’m a disability studies scholar and activist. My description that I’m now trying to make into a catch phrase is that disability is an embraceable form of human diversity.

This is a foundational belief for me.  I see that the things we categorize as “defects,” “flaws,” “problems,” can be framed entirely differently. We’ve identified loads of things as flaws in the past and now see them as beneficial, as part of human diversity.  And I think that’s always a good thing.

For instance, “scientific evidence” categorized African Americans as subhuman in the 19th century. In the same time period middle-class white women were medically understood to be incapacitated during their menstrual periods, and in danger if they used their minds then—blood would be inappropriately drawn away from the uterus and into the brain.

Framing, right? Cultural construction. We understand now that these “medical” and “scientific” truths were based on cultural assumptions and stereotypes. Now we can see how problematic those claims and arguments are. Just because something comes from a doctor or a scientist doesn’t mean it’s accurate.

I encourage us to have the same skepticism when it comes to our various approaches to disability. As a culture we still feel quite comfortable seeing disability as something that should be eradicated. Many of us think this is an obvious, non-controversial claim:  “Of course we should get rid of disability if we can!” But I’d like us to be suspicious.

My daughter has Down syndrome, and I’m quite happy with her just the way she is.

But here’s where it becomes a bit tricky, for me and for other disability studies scholars.  Michael Berube says, in the voice of critics,

After all, who’s in favor of spinal cord injuries? What’s wrong with curing a disease, or remediating a syndrome, or alleviating an injury? Isn’t it a general species good that smallpox and polio and tuberculosis no longer sweep through the population? There’s no such thing as a Tay-Sachs Preservation Society, right? Well, right, but when you start talking too aggressively about “curing” or “eradicating” certain disabilities, some of us get kinda antsy.

This is the hard part:  we’re all grateful that a vaccine for polio was developed and that the condition has been essentially eradicated. And yet, the language of curing and eradicating does, as Berube says, make me antsy.

So what do I make of the (really, really early, inconclusive) suggestions that we might one day have a way to treat Down syndrome? To treat the minds of people with Down syndrome, to make it easier for them to think and remember?

I am suspicious.

If there’s a treatment that would allow my daughter to have less pain, I’d be open to it. But Maybelle’s not in any pain unless she falls on her knees or touches the hot stove. She’s a perfectly healthy, happy, robust person in the world. This isn’t true for all people with disabilities, and some of these individuals would like treatments.

But I don’t want a treatment that would change Maybelle’s thinking. I don’t fully understand how her mind works. She can comprehend more than she can communicate. Often she communicates through emotional actions (giving me a hug when she can tell that I’m sad, for instance). She’s often slow and deliberate in processing things: this morning in occupational therapy she stared and stared at the Connect Four board until she delightedly put the black checker into a row.

I don’t want to alter this. I don’t want to mess with her way of interacting with, assessing, and moving through the world. I don’t believe that I have infinite knowledge, that I should interfere in potentially identity-altering ways with another’s personhood.

How is this different than taking an antidepressant like Lexapro, something that many of us do to change the ways we move through the world? I don’t know that I have a concrete answer to this question. The easy answer—and one that I’m not certain about—is that people get to decide to take SSRIs or other psychiatric medications when they’re adults and making decisions about their own lives. I don’t think I want to do that with Maybelle, particularly when there’s not a problem (depression, debilitating anxiety, OCD, etc.) that I’m trying to solve.

Down syndrome isn’t a problem. It’s a condition. It’s one of the many characteristics that defines my daughter. And because I love, value, and treasure her just the way she is, I think I’ll keep my suspicious attention on the research with no plans—not even any hopes—for its progress.

Alison Piepmeier is a feminist disability studies scholar at work on a book called The Good Mother:  Confronting Impossible Choices and Changing the Game.  She’s also director of the Women’s and Gender Studies Program at the College of Charleston.  For more information, visit www.alisonpiepmeier.com.

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