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When most babies are born, possibilities abound. But, the discovery of her extra chromosome changed all that for my daughter and our family, at least in the beginning. Instead of possibilities, a whole new set of restrictions, rules and traditions descended upon us. As her parents, as good parents, we were supposed to followed the prescribed traditional route of specialized, segregated services aimed at fixing her (wink, wink) so she could be a contributing member of society (triple wink).
One embedded ideology locking in the traditional route- which I now believe to be false – is that we are all just individuals, unaffected by each other, disconnected in any real, meaningful way, and that we rather like it that way. We can claim our “success” as a result of our individual self, our individual labors, and somehow believe that we are best as individuals. And, with our individualistic view, we can justify the segregation of certain individuals who can’t claim success – since it is their fault (or weakness) and beside, we don’t need them anyway.
Katie’s presence in my life and my relationship with her uncovered some sadly mistaken assumptions about people with an extra chromosome and others deemed ‘different’ by our society. Most importantly, this knowing helped me uncover sadly mistaken assumptions about myself and offered me the opportunity to hold traditional ideologies up to the light of day and see them for the fallacies they are. This knowing gave me the chance to rethink status quo ideologies and replace them with hopeful ideologies that are more connected, holistic, honest…..and well, human. I’ve been trying to live out those new beliefs since. Some call it an inclusive life but, whatever its called, the idea is that we are enriched when we are together in all our diversity. This page from my journal is a reflection on ideology -old and new.
Oh….and this journal entry led – in a nonlinear way – to the development of several paintings- including this one.