The Damaging Language of “Cure” and Down Syndrome

When Amy Julia Becker asked me to write a post responding to the question “Should Down syndrome Be Cured?” I had a strong feeling of déjà vu all over again.

Haven’t we debated that question already?

A few seconds on Google revealed that yes, we have.

In early 2010, Lisa Belkin wrote a Motherlode column with the very same provocative question as its title. Her piece was responding to news that Stanford University researchers had made progress with drugs designed to improve memory and cognition in people with Down syndrome.

“Good news, right?”  Belkin asks. “Not necessarily.” She quotes at length a woman named Jenn Power, mother of twins with Down syndrome, who felt deeply conflicted about the new developments. She said she loved her boys as they were and would not want to make any intervention that might change them. Belkin concluded by asking, “if there were a cure for your child that would fundamentally change who he is, would you welcome it?” With sad predictability, the piece ends with a pileup of vitriolic comments that accuse Power of being selfish, ignorant, and delusional.

In an excellent response, Michael Berube argued that the problem was not with the research itself but with the damaging language of “cure.” As he pointed out sensibly, Belken’s title is something of a distraction. In truth, the research isn’t promising anything like a “cure,” but rather to mitigate some of the effects of Down syndrome. Put in these more reasonable terms, the news sounds a lot less threatening and a lot more along the lines of the kind of “reasonable accommodations” we are already supposed to be making for people with disabilities in the wake of the Americans with Disabilities Act. Mitigation might come in the form of drug therapy, Berube noted, but it might also come about through changes in the environment like providing people with Down syndrome with modifications in a school curriculum and support to live and work as independently as possible.

Once again we’re hearing news of a breakthrough in research on drug therapies to enhance the cognitive processing of people with Down syndrome. And once again, the discussions seem to fixate on the controversial notion of a “cure.”

Why do we keep having the same conversation?

Let me suggest a few reasons.

One is that the idea of a cure is much more sensational than the idea of mitigation (Berube only half jokingly points out the contrast between “race for the cure” and “race for reasonable accommodations”). I’m certainly not opposed to any research designed to improve the health and well-being of people with Down syndrome, nor am I opposed to curing diseases that cause suffering. Whenever I get news about new developments in drugs or gene therapy, I always read with interest. But when I look more closely at what the scientists are saying about their own work, they rarely speak of “curing” Down syndrome but rather of mitigating its effects. The problem really arises as the popular media attempts to translate what may be very complicated and very preliminary research findings into something newsworthy.

And why is the language of “cure” a problem? For one thing, it implies that Down syndrome is a disease. Disease comes with inherently negative connotations of being a medical condition in need of correction or elimination. Contrary to what many people, including some doctors, would believe, Down syndrome is not a disease. It is a genetic condition that may or may not come along with health-related problems. In a culture obsessed with impossible ideals of physical and mental perfection, is hard to make sense of the category of “healthy disabled,” which is where I would locate people with Down syndrome who do not experience other medical complications. For another thing, the quest for something so definitive as a cure can distract from smaller and more immediate ways to improve the lives of people with Down syndrome and their families by making changes in the social environment, like providing better educational opportunities, and access to therapy and meaningful work.

Another reason we keep having this conversation is a collective reluctance to believe the voices of those who claim they don’t want to change a loved one with Down syndrome. Responding to the earlier research breakthrough, Jenn power wrote, “as a mother of two little boys with Down syndrome, boys whose identity, personality, appearance, is linked to that extra chromosome, my ability to rationally argue my point is seriously compromised.” But what’s unreasonable about her position? Why, when it comes to Down syndrome, are we so much more willing to listen to doctors and scientists—some of whom, in my experience, have very little knowledge of people actually living with Down syndrome—than to the families whose lives are touched by the condition? Why do we discount the many parents, sibilings, teachers, and caregivers who tell us that a person with Down syndrome fills their lives with joy and purpose? Why do we assume that because someone approaches a question with an emotional investment they are less, rather than more, authoritative to speak the truth?

It’s time to stop asking whether Down syndrome should be cured. Let’s listen to parents for a change, when they dispute the misconception that Down syndrome brings suffering and hardship to the families it touches. Let’s also listen to the family members who tell us all the ways that caring for a person with Down syndrome is hard, and look for less sensational solutions to lessening the burden. And let’s listen to the scientists who are not promising anything like a “cure” for Down syndrome, but rather to better understand and mitigate its effects. Framed in this way, reports of the latest research might give us less to blog about, but that might mean, for once, that they’ve given us some news that most of us can agree is good.

Rachel Adams is the author of Raising Henry: A Memoir of Motherhood, Disability, and Discovery. She has also written for Salon, The Times of London, The Chronicle of Higher Education, Bloom, and she blogs regularly for The Huffington Post. She teaches at Columbia University and lives in New York city with her husband and two sons. Find out more at http://www.racheladams.net
About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. Alison Piepmeier says:

    Great piece, Rachel, and I agree completely. I’m nodding my head particularly enthusiastically at your discussion of “disease” and what it means. “Healthy disabled”–I have to make this point about Maybelle all the time, like today, when I filled out a form for camp.

  2. i don’t care about the terminology.. and if it is called a cure or a mitigation or whatever.. i want something to take away down syndrome from my son.. whatever you want to call that.. i would give all my life for a cure.. or a medicine that would make that extra chromosome disappear..

    • Sam, Thank you for your comment. Would you be willing to say more about why you want to take DS away from your son? My daughter Penny is one of the “healthy disabled” that Rachel describes in her essay, so I don’t even think about the effects of DS on her very often. But I can imagine other scenarios, and it would be helpful for me to understand why you feel so strongly about this on behalf of your son.

  3. Bob Schoen says:

    Note perfect Rachel…Thank you from Research Down Syndrome.

  4. Louise Kinross says:

    Well said Rachel! I remember the piece by Jenn Power SO clearly about her love for her sons AS THEY ARE! And I also remember the horrible comments that were so full of ignorance that implied that she couldn’t possibly know what she was talking about!
    Good point about the distinction between disease and condition. I think a synonym for “cure” is “normal.” That’s what cure is all about, right? Making someone “normal” again so they don’t threaten our sense of control.
    And we are seeing exactly what you describe with Down syndrome with autism re focus on cure which means no money is left for real supports that make a difference for the people living with it.
    And there have been many studies showing that physicians rate quality of life of people with disabilities as very low, while the people with the disabilities themselves rate their QOL as good, even excellent, and families rate it somewhere in the middle.

  5. Mike Sullivan says:

    Yes. Ironically, the next blog in the series by a Doctor starts of with the inevitable labelling of a disease.


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