27 Nov A “cure” for Down syndrome? — Reader feedback #7
Previous posts questioning the efforts to “cure” Down syndrome begin here and here.
Tora Frank of Madison, Wisconsin, whose daughter Asha has Down syndrome, offers a different view:
I would be eager to provide my daughter with a medication that could help her to learn more quickly, struggle less with everyday tasks, communicate better with those around her, make her needs known, allow her more independence. No, not eager—I would be *frantic* to do so. But is that assertion a comment about how I value my daughter? Am I somehow saying that I want her to be different—or that I want a different child–that I am dissatisfied with my daughter as she is?Not in the slightest. I’d argue that I’m just like any parent who wants to ensure, to the best of their ability, that their children are happy, healthy, and well.
The difficulty, if there is any, is that I feel the need to fiercely protect my daughter’s right to be exactly who she is. There are plenty of folks who believe that my daughter is …an accident …a mistake …a waste of space …a burden that society must bear. There are people who think her life should have been avoided, and even some who think that bringing babies like her into the world is unethical. So I feel as though I need to express, for all to see, that I’m proud of her every day. That I love her just the way she is.
But am I willing (even hypothetically) to put my need to assert that I love my daughter, the proud possessor of an extra chromosome, exactly as she is *above* my desire for her to thrive? Nope, not at all.