I’ve been thinking a lot about this month and what it means. Thinking, but not really finding the words to write about it. I’ve read many articles and blogs about how we don’t need autism awareness now, only acceptance. I’ve read about people lighting it up blue, refusing to light it up blue.
The first World Autism Awareness Day took place when Pudding was just a few months old. It came and went without me giving it any thought. I was an outsider.
Sometimes I still feel like an outsider. Perhaps it is all these years of living as an expat- I don’t seem to fit in even where I’m supposed to belong. Even when I’m fully in agreement with someone’s perspective, I seem to see another side. I’m divided. Conflicted.
I have my reservations about the Light It Up Blue campaign. I’m concerned that Autism Speaks is speaking without listening to autistic adults.
And yes, what good is awareness without acceptance?
But what if there is a fundamental lack of awareness? What if, instead of the right to a free and appropriate education, schools (even private, special needs schools) refused admission because of an autism diagnosis? What if there are barriers here that individuals and families have to face that I will never even understand, coming from a whole different world.
So when we lit up blue, it was in a spirit of solidarity. Less about the charity that initiated this campaign, and more about how autism has connected me to people in this beautiful country who I would never otherwise have known. Like my friend who started a charity from her living room, because she knew that there wasn’t going to be one if she didn’t. Or my friend Di– unable to find a school to meet her son’s needs- opened her own!
Or people whose lives have been touched and forever changed by knowing our daughter. Her beloved teacher wrote to us this week:
I just can’t tell you how much of a privilege it is to be Pudding’s teacher (or Pudding being my teacher?)- she is a shining light. Today as we got ready for Show and Share, she somehow got herself ready to talk to the group before we had even had a chance to choose who went first. She had her picture of a spider (in black – no sign of pink or Hello Kitty??!!!?) that she had drawn as she got to school this morning and put on the show and share table before assembly. She is better at planning her day and being ready than anyone I know. She then lapped up the limelight while she showed her classmates her picture and waited for the applause. How things have changed!
She continues to surprise me and teach me, but most of all she makes me smile.
Happy World Autism Awareness day! Pudding has made me aware of so many things and I am so grateful!
And I think about one of my local colleagues who came to me today realizing that as I talked about my daughter, I could have been describing his. Through awareness coming to understanding and acceptance.
And beyond South Africa. I think of other people I’ve met through this blog, all over the world who are my heroes, my friends, my community.
My girl wouldn’t shine blue. She is all pink. But she shines.
For me it is beyond a campaign, beyond a charity, beyond one country. I think of a whole planet with lights scattered all over. Some of them may be clustered together, some may be the only light around. We shine together.
Maybe I don’t really fit in, but I still know I belong. That might be what we all really need from this month.