I have a child with Down syndrome, but I’m not involved in the “community” in any way at this stage of our lives. (When she was little, I was on the board of directors of the local Arc, which advocates for and serves people with disabilities, but that’s pretty much been the extent of my activism or involvement.) I get a monthly email from the National Down Syndrome Society (or is it Congress? see: I don’t pay a lot of attention), and I sometimes read it. But generally, I don’t pay a lot of attention to the latest news.
This month, I’m late to the party in hearing about this latest bombshell of research: scientists have found a way to “silence” the extra chromosome that causes trisomy 21 in the lab.
I’m still trying to get a handle on what the research really means. But essentially, it could mean there could be some kind of treatment developed in the future to help reverse some of the symptoms associated with people having a whole extra chromosome. Biggies: maybe reducing the likelihood of heart problems or even the cognitive delays that affect all people with Down’s. Apparently, it couldn’t “cure” DS before birth, but it would be a treatment sometime during a person’s life.
Of course, people who have children or other family members with Down syndrome, or who are self-advocates, have varying opinions about this news. Some worry that “curing” DS would remove a valuable segment of the population that arguably helps teach others about love and understanding.
Here’s my take: if it’s possible to give my daughter a better life, I’m all for it. Of course, I love her just the way she is, and I love how she is just herself and how she contributes in her unique way to our family. But I have every confidence she would be just as wonderful and a delightful contribution to our family and to the community if she didn’t have Down’s. I am not actively seeking or hoping for a cure. No, but if this research were to lead to some improvement in her life, even a drastic change, I’d still take it. If it allowed her to be able to (finally) understand math, for heaven’s sake, I’d take it. Why not?
I don’t expect that this research will lead to any real change or treatment within her lifetime, really. But in the land of what-if’s, I’m firmly on the side of taking a cure. I don’t think Down’s makes her the delightful, amazing kid she is; I think she’s just that person anyway. And if she could lead an even more productive and healthy life, I’d let her. Doesn’t every parent want the best for their child? I know I do.
As for the idea of taking away a whole “culture,” I still feel there are plenty of other people with disabilities of varying types that still teach us that extra love and compassion. I don’t see us curing any of those things wholesale. It would just be a strange kind of selfish to just keep people with a disability disabled if they didn’t have to be, just so we could have another way to help people be compassionate. That just seems upside-down and weird to me.
I’ll be interested to see what comes of this research. I won’t hold my breath for a cure or any real life-changing treatment from it. But it’ll certainly be interesting to see what happens.