After writing my recent post about my decisions on testing I read this article about a widespread program of testing in Denmark. Denmark now has a program of free and readily available prenatal testing. The number of babies born with Down Syndrome in that country initially dropped by half and then has declined by 13% per year. Tests do not, of course, prevent or cure Down Syndrome. Tests simply make it possible to identify and terminate affected fetuses. In the US and UK, the rate of termination following a positive diagnosis of Down Syndrome is 90-92%. In Denmark it's even higher. The idea of a social policy designed and implemented to eliminate kids like mine makes me sad. It is impossible for me to think about this issue without personalizing it. It is impossible to separate public and medical policy from the reality that these policies are designed to eliminate and prevent children like Nathan from being in the world. For the record, I believe that Nathan is better off alive than dead, and my family is better off with him in it. I also would prefer to live in a society that includes and values all members rather than one that seeks to eliminate whole categories of people.
I then read this article in the New York Times Magazine, "A Drug For Down Syndrome". Among the issues raised in this article is the idea that there is not much funding for Down Syndrome research, as compared to disorders such as cystic fibrosis, possibly because if prenatal testing can take care of the problem, there's no need to invest resources in research. It seems as though the scientific and medical community has spoken about the value of these lives, by investing resources in "prevention" rather than intervention.
It seems to me as though parents of children with Down Syndrome could band together, raise funds, push for more funding for research. Why doesn't this happen? We band together to raise funds for support programs and awareness much more than for research. Some parents are quite vocal in their concerns about drugs for Down Syndrome having the potential to change their kids in negative ways. Some parents also feel that we need to accept and love our kids the just as they are rather than trying to change them.
I think that on balance, a drug that could enhance learning and memory and allow people with Down Syndrome to function more independently in their communities would be a good thing.
I understand the concerns about possible side effects or negative changes on personality or behavior. And I also worry that the emphasis on being "high functioning" detracts from the important message that all of us are good enough the way we are, we all have strengths and challenges, and we all need to be included. Dr. Costa, the researcher and father profiled in the New York Times article tells the journalist about his daughter's academic strengths, including the fact that she is one of only 2 people with Down Syndrome that he knows of who can do algebra. “If Tyche were really severely affected, I don’t know if I would have had the energy to go on with this business.” He does go on to describe positive feelings for all the adults in his study, regardless of intellectual level, but it's clear that his emphasis is on being high-functioning.
Where does this leave individuals with Down Syndrome who do not do as well on various measures of cognitive ability? Where does it leave their families? Envious and hoping for a drug? Wondering if there was something they did or didn't do (if only we'd started speech therapy earlier, tried vitamin therapy, pushed harder, etc. etc....)? Our kids all have different strengths and challenges, and I don't like valuing some above others. It feels like it parallels the "typical" world that doesn't value our kids because they aren't as high functioning as others.
I feel conflicted, both wanting to see increased funding for research that leads to developments to improve the lives of people with Down Syndrome, and wanting to say people with Down Syndrome are okay as they are. My child is wonderful as he is. Yes, I am willing to take steps to help him to succeed and be more independent. Yes, we'd be willing to try a medication to enhance cognitive functioning for Nathan. However, I also want to embrace him as he is, appreciate what he is doing, celebrate the successes he has. I suppose that as with any child, we love him as he is, but do want to see him grow and develop, and would be willing to try a product that is shown to help with this if the benefits outweighed the risks. I think funding this research is important. Clearly, as the Denmark situation shows us, there is a need for increased awareness too. The challenge for us as parents will be figuring out how to push for both.
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