“The supreme art of war is to subdue the enemy without fighting.”
― Sun Tzu, The Art of War
It is very late, and I"m extremely tired. My body is telling me about it. But I need to write this while I have this quiet moment and everyone else is asleep.
I found Estée Klar's blog, The Joy of Autism, after yet another failed attempt to join a parent support group. My husband and I tried to fit in. We really did. But 45 minutes of doom, despair, and agony and we just couldn't take anymore. It was supposed to help us. It did the opposite. It brought us down. And we just didn't feel about our son the way the other parents in the group felt about their children. We saw other parents thought we were insane because we wanted to use the time to request parents share strategies and resources for our loved ones on the spectrum. We wanted assistance in adapting our home and accommodating our son in our community and our lives. Other group members wanted a safe place to complain about their "damaged" children and mourn the lives they were not able to live as a result of giving birth to them.
I began reading Estée's blog because I liked the title. I became a frequent reader because she gave me hope that there were loving parents out there, parents who accepted their children. She spoke the language of love, human rights, dignity for neurodivergent people. She was the first parent I found who spoke from a place I understood. This came at a very critical time for me and I'll always have the deepest respect for Estée because of that.
Now I see a great many new sources jumping to place themselves first with an idea that has been around awhile, that is the idea of autism acceptance. Autistic disability rights advocates (see Loud Hands: Autistic People Speaking, by Julia Bascom), and some very enlightened parent advocates, Estée one of the leaders among them, were fighting for autism acceptance for years . Estée continues to advocate passionately for dignity for all regardless of neurology. So this situation is a bit annoying for those of us parents who learned the language of acceptance from pioneering voices. While in the best of all possible worlds autism acceptance is a concept that naturally should be expanding, we don't want those individuals who were avant-garde in the autism acceptance movement, people like the great autistic disability rights advocate Paula Durbin-Westby, who organized the first Autism Acceptance Day to be erased by the newfound popularity of the concept. The roots of a movement need to be firm in order to support its expansion.
If you have the autism acceptance song in your heart, add Paula and Estée's voices to your blog rolls, Subscribe to their blogs. Tweet, 'like', and show your respect and support to these powerful women. Don't allow their names to fade into internet oblivion as others try to opt into autism acceptance because it is now the fashion. They were doing it before it was cool. It is easier to say accept autism now because others paid the high cost for daring to say it before us.
Much Love
Estée's Joy of Autism gave me so much... not "hope," because I often think hope is a dangerous concept, and won't get into that here, but... something. A spark of illumination, anyway, that I was not getting from the mainstream groups that were what I mostly found when I first started reading about autism. I printed out the logo from Joy of Autism and had it on the wall in my office. I don't use that office any more. It's in an outbuilding here. I wonder if that is still on the wall.... yes, it's still there! I think I stuck that to the wall with thumb tacks in 2006 or 2007.
ReplyDeletePaual <3
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