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.

5 responses to this post.

  1. It reminds me of the debate within my other community, the deaf community. Over “fixing” hearing. You may or may not know but many Deaf are violently opposed to cochlear implants – and even the use of hearing aids.

    My two cents: the brain is a muscle like any other. Moxie’s spirit is hers and won’t change. It’s not what’s linked. If there was a medicine that would help her cognitive functioning and if it was safe, I’d give it to her, much in the same way that I wear my hearing aids every day to help myself function better in the world.


  2. I completely agree.


  3. Treating is different from “fixing” or “curing”. I too would work to improve cognitive ability. I think we do it by the therapies we use; even the good nutrition we choose to consume. Totally totally agree.


  4. Posted by Denised2004 on August 15, 2011 at 6:16 am

    Do you still have the article?? I would like to read it. I do think we should work on their cognitive ability. Anything to help them in the future with life!


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