Humpty Dumpty

Filed Under (Adam) by Estee on 17-01-2009

“Terror is fuel, wounding is power. Darkness carries the seeds of redemption. Authentic strength isn’t found in our armor but at the very pit of the wounds each of us manages to survive. As one widow put it…’Strength doesn’t mean being able to stand up to anything, but being able to crawl on your belly a long, long time before you can stand up again.’ Transformation is in our wiring,” says Mark Matousek in When You’re Falling, DIVE.

I have been thinking a lot about “crisis” lately. Cancer, divorce, disability, illness, death. Ironically, these are also the things that keep us from slumber and vibrantly alive. Aristotle called good luck the moment on the battlefield when the arrow hits the guy next to you. It’s a torn-in-half feelings, “partly shattering, partly sublime.” (Matousek). Most of us will have our share of luck and misfortune. We are meant to experience both as they are temporary, fleeting. “Luck” can come at a great price to either ourselves or to others, so there can never be an enduring sense of satisfaction over it.

This is a great way to define how the “acceptance movement” in autism can become kitsch and cliche and end up achieving nothing at all. People think that “all acceptance is good.” Acceptance combined with a sugary dose of naivete is not acceptance. Acceptance can look a LOT like denial. I liked Dr. Rachel Ramen’s thoughts in this regard (a physician quoted in Matousek’s book who lived with a “painful physical condition for fifty years.”):

“…’optimism is not required for healing’ ….how liberating is that for those who’ve scrambled to keep their own smiley-face masks in place when what they needed to do was scream?”

“In a dark time, the eye begins to see,” poet Theodore Roethke reminded us. With our illusions of safety exploded, out side the bounds of ‘normal’ life…new abilities indeed dawn in a person; values, intuitions, skills, perspectives that might seem unnatural — even perverse — to those who’ve led more sheltered lives.” (p. 11. Matousek).

Hmmm… I believe I was name-called quite a bit BEFORE the terms “joy and autism” were used by others. Over time, with people who make he effort to come to know Adam and I along our journey, know that there are many struggles that enable us to find the joy in life.

In a neighbourhood I live in which is blanded-down by illusions of security and “normalcy”, most of us are never open enough to feel the pain to experience, on voit le soleil. No matter if you’ve been hit by some kind of crisis, we are suppose to absorb the wounds so that we can live brightly.

Joy is only given to those worthy of their “sufferings.” For many of us who have become unmoored, do not be afraid to suffer in order to live.


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About Me


I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (, and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.