Just when I thought I was out, they pull me back in. ~ Michael Corleone
Note: What follows is drenched in sarcasm …
So there I was yesterday, perfectly happy being miserable. Taking a day to indulge in a good wallow in the futility of it all, spoon poised above the bowl, ready as I was to drown my sorrows with my old friends Ben and Jerry.
And then a couple of readers had to come along and kill my perfectly good pity party with their pep talks. They had to go and remind me that we do here matters. That me telling my story and you telling yours has an effect far beyond Diary’s front door.
Of all the gin joints in all the towns in all the world, they had to come into mine and say this ..
Everyone is allowed to feel this way sometimes. Just wanted to let you know that despite the sea of crap surrounding this, your efforts ARE reaching others. I’m on my way to a doctorate in child psychology, and I read your blog faithfully. The kids and parents I work with don’t know it, but they owe you one. I owe you one. Understanding autism from the inside out helps me be a better clinician. I’m better able to talk to my families, better able to understand and support my kids. Not that I’m making an enormous impact anywhere, but I like to think that the small things still count for something.
Hope tomorrow is better.
— and —
Jess – I have to echo what E said. From you, I have learned to look and listen in ways that hadn’t occurred to me previously. You’ve given me a better perspective on what my families deal with on a daily basis, and tools to be a more effective advocate.
What you say here has a ripple effect. Keep throwing those stones in the water!
Clearly, they weren’t playing fair.
So, despite my best efforts to believe that we are shouting into the wind in vain, these ladies convinced me otherwise. I tried. I suppose we all knew that my attempt at fatalism would be short-lived anyway.
So after a paltry one day’s reprieve, I’m back to my usual hopey changey blogging. Back to ‘Our stories matter’. Back to ‘Changing the world one heart, one mind at a time.’ Which, I must admit, is a much, more comfortable place for me to be.
So here it is …
With all the talk about capital A Awareness this month, and all of the derision aimed at efforts to raise it, a couple of things have stood out for me. Firstly, I’m going to go out on a limb and say that I don’t think that most folks – even those who most vocally object to it – actually have a problem with the concept of raising awareness in and of itself. Correct me if I’m wrong (seriously, please do), but from what I can gather, the real trouble is with what ‘Autism Awareness’ has come to represent — trademarked puzzle pieces, light bulbs, numbers, statistics. Marketing and fundraising campaigns riddled with words like disease, tsunami, burden, liability, prevention. A focus on parents, caregivers, siblings. Everywhere except where it needs to be.
And even though we can all agree (please tell me that we can all agree) that FAR (FAR, FAR) more resources and support and services are DESPERATELY needed RIGHTTHISVERYSECOND, it’s not hard to see why some folks take exception to these popular methods of raising ‘awareness’ in order to get them.
To my mind, awareness — the kind with a little ‘a’ – the concept, not the brand — is something else entirely. Raising awareness is the sharing of stories. Nascent awareness is finding out that autism means very different things to different people – that it is experienced in vastly different ways. That it is viewed differently. That it is a word that describes a certain set of common traits but that does not – cannot – serve to define a life.
Becoming aware is getting to know PEOPLE and beginning to understand their experience.
In my experience, that kind of awareness starts a domino effect, leaning into acceptance, nudging action.
Ever since the media haphazardly (and inaccurately) suggested that Adam Lanza’s Asperger’s somehow contributed to his monstrous act, there has been a significant uptick in efforts to show that autistic people are, well, ya know, people. One doesn’t have to search far to find photographs of autistic people sporting captions along the lines of “This is Joey. This is autism.”
I applaud and am grateful for each and every one of those efforts to personalize autism in the public realm, and I was thrilled when I was asked to participate in one of them by sharing a photo of Brooke. But when I started to type on it, ‘This is Brooke. This is autism.” I paused. I just couldn’t do it.
While I understand the purpose of writing it that way (and don’t take issue with anyone who does!) it just didn’t sit right for me. This is Brooke, yes. And she is delicious and fabulous and loved beyond measure. But IS she autism? Well, no.
So when I sent the photo to Autism Shines, it looked like this …
She has a laugh that could fuel a thousand suns
she is love personified
she is joy
she is light
she is autistic
Just as there is no one autism, there is no one person who can represent it. And even if there were — even if there were someone out there whose experience somehow miraculously summed it all up, they still would not BE autism. They would be a human being. A human being with thoughts and feelings and a beautiful, rich, complex – and yes, different, kind of mind. A human being with skills and talents and preferences and opinions. A human being in need of accommodation, help, and support, yet fully deserving of all of the respect and dignity, all of the rights and responsibilities, all of the assumptions of competence and potential and worth that would be afforded to any other human being.
A human being like Brooke.
Who catches and reflects light like a prism. Who lives BIG and loves hard. Who laughs (and cries) with every part of her being. Who crawls into hearts and changes everyone she touches for the better. Who loves without reservation and who is more authentically herself than any other human being I’ve ever encountered.
This is my girl.
Her name is Brooke.
She is autistic.
And this April, as every other month of every year, I would like to make the world aware that she and others like her are very much worth getting to know. Because, for me, it all starts there.
Thank you, Jill and E. Damn you both. 🙂