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Reader Helen sent a link to this discussion from a NYT blog entry asking whether or not a parent should cure his child’s Down syndrome if a cure became available. My first response is, “Absolutely” — but it turns out that the discussion is rather more complicated. A mother of children with Down responded to the news that science may be on the path to curing the condition responded with tears. Here’s a snippet of what she wrote:
As you know, I have many years of history supporting people with intellectual disabilities. Through my connections with these remarkable people, both personal and professional, I have become more and more convinced of the fundamental human dignity present in each person, the vital importance of diversity among the human race, and the particular and irreplaceable role that folks with intellectual disabilities play in creating a more humane, compassionate, and hospitable society. It is clear to me that, as a society, we need what people with intellectual disabilities have to offer.
Before we welcomed Josh and Jacob into our family, I might have had a much easier time responding to this particular piece of research. But 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. I find it hard to read this article without hearing a judgment on the value of my children, children who have transformed my life and the lives of many others — for the better — with the help of an extra chromosome.
I can see where she’s coming from, but still disagree. If I had a child with Down, and a cure were possible, I would seek it, for the same reason I would seek to cure my child of deafness or blindness. It seems perverse to me to deny a child the pleasure of hearing Mozart or Billie Holiday, or seeing a sunset or one of Monet’s Giverny paintings, for the sake of upholding the dignity and worth of deaf and blind people. Why must one preclude the other? Is my attempt to lose the extra weight I’ve gained this past year an intolerable judgment on the dignity of the obese? Again, this seems perverse.
But here’s where it gets especially complex. The Times blogger puts the fundamental moral question like this:
If there were a cure for your child that would fundamentally change who he is, would you welcome it?
That casts disability in terms of personal identity — which makes this a minefield. There are people who have Asperger Syndrome, a mild form of autism, who very much resent the idea that so-called “neurotypicals” think they have to be cured of anything. Some deafness activists feel very much the same way about their condition. You would think that nobody could possibly object to helping a lame person to walk again — but you would be wrong. I was reading the other day about a disability activist who resents the idea that there’s anything about him that needs to be fixed.
Again, I understand where these folks are coming from. A few years ago, I heard an anguished story on NPR in which a dwarf spoke about how there are fewer and fewer people like her, because they are being aborted. She fears a slippery slope between finding someone’s condition to be seriously flawed, and deciding that they are not worthy of life (you’ll remember, perhaps, the horrifying finding that 90 percent of all fetuses diagnosed with Down are aborted, and the social pressure on mother’s of unborn Down babies to abort). To claim that one’s disability is a constitutive part of one’s identity is in part a strategy to defend one’s right to exist by lashing disability to personhood. Still, it seems to me cruel to deny a Down syndrome child the ability to lead a more independent life by curing them, if medical science can offer that one day. Same logic applies to deafness, blindness, and so forth.
And a question that’s actually realistic here and now: if you would choose to intervene via medical technology to cure your child’s disability or condition, on the principle that it would improve your child’s life, on what moral grounds do you refuse to allow your child to have cosmetic surgery, if you could otherwise afford it, and your child wanted it? If your child had a disfigurement, that would be an easy call — but what if he or she looked otherwise normal, but wanted a more ideal appearance?
Again, the line is going to be drawn somewhere in matters like this. The question is, where? And how do we make that determination? Thoughts?