Treatment Messes with the Essence?

Do we love Down syndrome, or do we simply love our child who has Down syndrome?  If we treat the syndrome, does that mean that we are rejecting the core identity of our child?

One of the most common objections to treating Down syndrome is that the child’s essence would be changed.  For years I’ve heard this regarding treating with targeted nutritional intervention.  “But I love my child just the way he is.  I don’t want to change him.”  Nowadays it is a concern regarding any treatment which would result in improved cognition or neurogenesis.

My daughter Grace just addressed this objection with her usual insightful commentary.  The whole post is worth reading, but her thesis is here:

But changing Mary’s future doesn’t change who she is. That Mary isn’t made yet. As we treat her brain, she will have new experiences that shape her. She’ll grow. But her identity won’t be distorted, because she remembers those struggles. Everything she ever tried to learn, say, or do, and couldn’t is a part of her history.

We’re adding to Mary, not subtracting.

In her post Grace itemizes some of the changes she has seen in Mary since we began the fluoxetine (Prozac) over three months ago.  Her observations are different from mine.  She uses these examples to show that Mary’s essence has not changed, even though her abilities have.

One Response

  1. [...] treat cognition (brains) in Trisomy 21 is surprisingly controversial among parents.  Last week I discussed whether cognitive treament changes core identity. My answer was “no.”  We are changing [...]

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