There is a phenomenon in the Down syndrome community that I just don’t understand. I want to understand it because I feel like something is eluding me.
Recently, there was an article in the NY Times about a neuroscientist researching pharmaceuticals that might enhance the cognitive function in people with Down syndrome. His situation is a bit unique in that he himself has a teenaged daughter with Down syndrome.
The article mentions a phenomenon I have seen in the Down syndrome community both online (message boards and blogs) and in real life. Some people balk at the idea of “treating” or “curing” the cognitive disability associated with Down syndrome.
Color me confused. I’m not quite sure what to make of this. On one hand, I think I understand. Down syndrome is an inextricable part of our children. Literally in every cell. To say that needs a treatment or a cure is somehow saying who they are is not ok.
On the other hand, why is it that we will treat the health conditions that can come with Down syndrome but we stop short of doing anything about cognitive disability? Do we presume that personality is determined in part by cognitive ability? Would increasing the cognitive ability of someone with Down syndrome somehow change who they are?
Is the opposite also true? If someone with typical cognitive abilities is in a car accident and develops a cognitive disability, is that person now less than who they were before? Is cognitive ability really so tied to personality, who you are?
Rowenna was born with a heart defect. We fixed it. Rowenna had difficulty eating. We treated it with an ng-tube. Rowenna has hypothroidism. We’re treating it. Rowenna has low tone. We’re working on it with therapy. Rowenna has little stability in her ankles. We’re using orthotics.
Rowenna has a cognitive delay. Why do I think twice about “treating” that part of Down syndrome? Should I think twice? Why do I think twice about possibly opening more doors to my daughter?
It’s a strange feeling, to be sure. Definitely something for me to keep thinking about.