Thursday, November 15, 2012

Is difference an illness, an identity, or both?

I'm ferociously reading Far From The Tree by Andrew Solomon. His insights on how parents find meaning in raising children with disabilities and other differences is fascinating. I've marked up the first chapter with lots of underlining and asterisks, but this passage really made me think.

"Anomolous bodies are usually more frightening to people who witness them than to people who have them, yet parents rush to normalize physical exceptionalism, often at great psychic cost to themselves and their children. Labeling a child's mind as diseased -- whether with autism, intellectual disabilities, or transgenderism -- may reflect the discomfort that mind gives parents more than any discomfort it causes their child. Much gets corrected that might better have been left alone.

..."We often use illness to disparage a way of being, and identity to validate that same way of being. This is a false dichotomy...Many conditions are both illness and identity, but we can see one only when we obscure the other. Identity politics refutes the idea of illness, while medicine shortchanges identity. Both are diminished by this narrowness.

"Physicists gain certain insights from understanding energy as a wave, and other insights from understanding it as a particle, and use quantum mechanics to reconcile the information they have gleaned. Similarly, we have to examine illness and identity, understand that observation will usually happen in one domain or the other, and come up with a syncretic mechanics. We need a vocabulary in which the two concepts are not opposites, but compatible aspects of a condition. The problem is to change how we assess the value of individuals and of lives, to reach for a more ecumenical take on healthy. Ludwig Wittgenstein said, 'All I know is what I have words for.' The absense of words is the absence of intimacy; these experiences are starved for language."

Louise here again -- I've often felt I don't have the words to describe my experience with a son who won't achieve conventional success, but who has a rich and valuable way of being and from whom I've learned the most about what matters. As Solomon says: "These experiences are starved for language." We don't have the vocabulary or imagination to articulate them because they fall outside mainstream thinking and language. We need new words -- new ways of defining beauty, wisdom, purpose, movement and strength that capture the diversity of how our children express these things.


Hi Louise. We've had a fierce conversation going on over at my blog about this topic. I'd love to get your insights. Best, Ellen

I was going to say .. .that conversation is happening in spades in spiritual/religious circles and conversations... with a sometimes deeper and broader language and also an ability to think wave/particle (i.e., non-dualistically). So, of course, I will now head over to Ellen Painter Dollar!!!!

Actually, tread over there with gentleness in your heart! Or,maybe,instead go read Judith Snow about the need for a different kind of story, one that parents sometimes cannot give their children. and a good reason to be reading widely (thank you Louise)and particularly listening to voices that could be our children's (instead of just parent's stories).

I'm looking forward to reading this book -- and to joining in the debate about it. I agree with you about needing a language to articulate what we experience, although I find that stories are this language. I feel as if I know your Ben through your words -- I guess what I'm saying is that those who have the ability describe it quite well. It's the understanding part of others that is difficult to overcome --

You are a wise woman and you are blessed with sunch a wonderful child.