"Cure" with Caution: Why We Shouldn't Jump to "Fixing" Disabilities

From ChristianityToday.com (2.12.10):

Considering 'Curing' Down Syndrome with Caution

Why we shouldn't be too quick to think disabilities need correcting.
By: Amy Julia Becker

"Should Down syndrome be cured?" read the title of a Motherlode (the parenting blog at The New York Times) post a few weeks ago. "Would you cure your kid's Down syndrome?" was Rod Dreher's version of the question. Both posts and the hundreds of comments they provoked originated with a study published in Science Translational Medicine last November. The study detailed research conducted on mice that had been genetically engineered to mimic Down syndrome. The researchers provided a drug to alter the brain chemistry of these mice, and the mice who received the drug demonstrated improved cognitive function...

...the study itself raises ethical and philosophical questions, but even more problematic is the writers' suggestion that this treatment offers a way to "cure" Down syndrome. The language implies that Down syndrome is a disease, a sickness...This language demonstrates more than ignorance of biology. It reduces Down syndrome to a medical condition rather than understanding people with Down syndrome as whole—emotional, physical, social, spiritual—persons...

...Readers who commented on the posts reflected this perspective with comments like, "DS is a disease that limits a child's potential. You'll never meet a Doctor or a Lawyer with DS," or, "The reason it is called a disability is because it is a lack of something (mental ability in the case of Downs) that makes a complete human being. That is a tragedy; it is not another equally good form of personhood." Again, the language is telling. Limitations are bad. Being a doctor or lawyer is good. People with Down syndrome are incomplete human beings.

...[One] theological lens I use to think about Down syndrome, and about human life in general, comes from John 10:10, where Jesus says, "I have come that they might have life, and have it to the full." When our daughter was a few months old, I wrote in my journal, "It is hard to believe that she won't be able to solve problems or read literature. And yet it is easy to believe that she will rush to a friend, or even a stranger, in need. Easy to believe she will bring joy and light and life. Can she live a full life without ever solving a quadratic equation? Without reading Dostoyevsky? I'm pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I'm pretty sure I can't."

This recent research demonstrates a theoretical possibility that drug therapy can increase the cognitive potential of people with Down syndrome and also potentially protect against Alzheimer's disease, which is prevalent among people with Down syndrome. This research is probably good news for those with Down syndrome. But the language used to discuss this potential therapy demonstrates that we have a long way to go before we understand these individuals for who they are: members of the human family who, like the rest of us, are limited and vulnerable and have much to offer. We should all watch how our language and assumptions can unintentionally exclude and devalue human beings created in the image of God.

People with Down syndrome don't need to be cured. They do need to be treated as the complete human beings they are.

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Comment Below:  How does your faith affect your perception of disability?  Where do you draw the line between acceptance of the person and seeking a cure for the condition?

Comments

[ivy]

ahhh church. that's one reason why i don't go. they claim to be acepting but they're not.

[Stacy]

I thought this excerpt was particularly interesting (and true):

"...whereas other research demonstrates that children with Down syndrome have been socially conditioned to meet low expectations for their ability to learn. (Low muscle tone as babies leads to low success at the tasks babies try to accomplish, which leads to lower expectations by parents, therapists, teachers, and others, which leads the child to try less. Taken from Teaching Reading to Children with Down Syndrome, by Patricia Logan Oelwein.)"