How could the discussions of representation NOT lead to a discussion where at the crux of it we are talking about lives of people that are fit for living ... or not .
The personal is political. What decision you make as a citizen , is yours alone to make to a certain extent. When you are serving as a policymaker, those value judgement color the lens you are seeing the world through . It is informed by a number of things messages from the media , from family , from your own personal experiences and whatever lesson you learned from that.
If images of disability , physical , cognitive, emotional , communication or adaptive, sends the message that the one who OVER comes is inherently special , not because they (and maybe friends or families ) have navigated systems successfully ,among other factors, but because they are the exception to the rule .. then no you would not want to bet on that.
I will continue to say that we are the society who talks who tries to critique the top 1% but are tired and willing to do everything to attain that sense of wealth and comfort . The gym and diet industries are billion dollar industries because the message of being healthier, faster, fitter inundates our screens on what it is to be the best you can . Second is never ok, it is second. People subscribe to that .
When I tell people about my son. as I describe him , the only fact about him that makes people look like they have lost their puppy is the fact that he has an extra chromosome. So no , it is not the only the person with the disability who this is problematic. While Simi Linton's book was sidelined in our classroom discussion , it was reading this book , my body politic and meeting other adults with disabilities who had a strong sense of identity and questioned representation that allowed me to begin crafting a positive identity for my son , that included his disability rather than using the language of the status quo .
SO when it comes to end of life decisions ,or as is the case for many children with genetic conditions , pre life conversations forgive me , if I cannot be analytical about it . I believe in a women's right to choose and I ALSO wish the target that is on the back of a child with an extra chromosome would go away . I wish that instead of talking about killing people , we would talk about respecting the choice of someone who is autonomous and providing systems of care for [people who might make the choice because our infrastructure of services and supports lack . In these types of conversation the latter gets lost . The WHY of decision making gets lost. But the WHY is what illuminates ableism , racism , class ism , that are embedded in our structures and impacts access to what we consider quality lives . Again the word quality is subjective .
I know that no parent wants to bury the child . But I would . I pray for a long life , because I don't trust this world for him without me. I mean look at the very conversations we are having .
I am done .