Ed other note: Since my conversation with Ari was not ‘on the record’, so to speak, I’ve limited the following to my side of the conversation. I’m fairly certain that I could print everything that Ari said as well, but, as we didn’t explicitly discuss it ahead of time, I feel that it would be a violation of his privacy to do so. As you will see, he did agree to be interviewed, so we will hear a lot more from him soon.
After we’d talked for a while, Ari asked me about myself. “I’m an accidental advocate,” I said. We talked a little bit about the blog, and I told him that I had had no idea that I was a writer – that I WASN’T a writer – until the day that I didn’t know how NOT to write. (I realize that the preceding sentence makes a pretty clear case against calling myself a writer now, but bear with me.)
I told him just a little bit about my journey, about the dramatic evolution of my perspective on autism, on advocacy, on dignity, on humanity. I told him that it had taken time for me to come to the place that I’m in now. That I started where so many of us well-meaning and loving parents do – prizing indistinguishability – believing that typicality, or at least a reasonable approximation thereof, is the ultimate goal. I told him that I didn’t have the slightest idea how damaging a message I was inadvertently sending to my girl in the process.
I told him that now, six years hence, my daughter has two friends – real friends, I said – two autistic girls who love her and who she loves in return – with whom there is no expectation, other than being her glorious, delightful, delicious, and autistic, self.
We talked about the time that I mentioned to Brooke’s BCBA in the integrated preschool that I wanted to set up a playdate with one of them. I told him how we’d just witnessed them participating in a joyful – if to us incomprehensible – exchange. And I told him how the BCBA had advised against it.
Preschool conference ~ 2007
“So, now that we have some strategies in place for facilitating play for Brooke at home, we’d really like to try to come up with some play dates for her.”
“That’s a great idea.”
“So we we’re hoping to get your feedback on who might be a good fit for her. We were thinking about starting with Lizzie. They seem to have so much fun together.”
The BCBA’s face has changed. Bubbly and smiling has turned to quiet and concerned.
There’s an awkward pause, then she haltingly continues, obviously measuring her words.
“It’s just that well .. they aren’t exactly .. um .. I’m not sure how to say this. They’re not really such good influences on one another.”
She says influences as one would say cancer. But ya know, contagious.
I picture Brooke and Lizzie, doing what they do every time they see each other.
They have this silly script they’ve fallen into. We call it doing the Doh Kas. They jump up and down and say “Doh Ka!” together again and again. It has meaning to no one but them. It’s their thing. Two little girls who thrive on knowing what to expect have come to know exactly what to expect from one another. It’s just not what’s expected by the rest of the world. So it’s not ok.
“Oh,” I say, deflated. “I guess that makes sense.”
We’re all so focused on giving Brooke the tools to interact ‘typically’ that I accept this as an answer.
For a while.
I told him how I didn’t know yet to say, my voice dripping with sarcasm, “Gee, you must be right. Who would want to encourage joy? Or heaven forbid, foster a beautiful connection between two little girls for whom connection is not easy?” I told him that I didn’t speak up because I didn’t know that we were chasing the wrong goal.
We talked about how freeing it is to have left behind the shackles of that desperately flawed thinking. How fulfilling it is to live a life of truth, of authenticity, that starts with my daughter but extends to each of us in her orbit. We talked about how determined I am now to encourage Brooke to spread her beautiful wings – to show us all — and the world — the magnificence of her unique colors. Not to hide what might be less palatable to those around her because it is different or confusing – not to teach her – wittingly or no – overtly or subliminally – that she should ever, ever be ashamed of who or what she is.
I told him that selfishly – purely selfishly – I am so grateful to her for breaking open my insular world. For opening my eyes to the variety of not just the autism spectrum, but the entirety of the human spectrum, in all of its divine glory.
I told him that I worry about the messages that the parents of newly diagnosed kids are getting when they turn to their peers for support. I told him that I worry that the entire paradigm is broken. I told him that what scares me most is the desperate lack of understanding about what he and other self-advocates do. I told him that I’m terrified that the myths, planted in the soil of fear and watered by frustration and anger and desperation, have grown tall and strong enough to stymie communication and thwart any hope of progress.
I told him that I want to help. That I want to bridge the gap. That I want to ask him the hard, thorny, even accusatory, questions that come from our community. And I want to ask them in an open forum – here on Diary. That I want to talk about why it matters so much that we understand who and what we think we’re fighting. Because the beast that we’re shadow boxing may just look very different in the light. Because it may just be our own children.
I told him that above all, I’ve come to understand that everything that I do in this arena — everything — must be guided by one principle and one alone – respect for my daughter’s dignity and her right to self-determination. I told him that I used to assume, because I am her mother and I love her and I want nothing but the best for her, that everything that I did was in her best interest. I told him that I owed him and other self-advocates an immense debt because it was they who had shown me the folly – and the danger – of that assumption. I told him that it is because of people like him that I now know that it is not enough to act on her behalf based on my inherently flawed view of the world. That I must instead do everything in my power to help her ultimately act – on her own behalf – on hers. That that is my job.
That it is also my job to assume that she has something to say, no matter how she may express it. That it is my job to assume that she has an opinion, whether or not she’s yet been asked to share it. That it is my job to make sure that she IS asked – and to help her find a way to understand and to respond. That it is my job to arm her — with services and therapies and accommodations and supports — that will give her the power to navigate the world around her, that will enable her to fully participate in it to whatever degree she chooses – in her own way. That it is my job to remind anyone who comes near my kid to teach her or guide her that our goal is not to create an adult who is indistinguishable from others, but one who is safe, happy, and as self-sufficient as is possible and comfortable for her.
That it is my job to teach her to be proud of who she is.
I told him that I’d be back with the questions – the ones that would address those damned elephants in the room.
I told him again that the questions would be unvarnished. That they would be raw. But that unvarnished and raw is real. And doing it any other way felt false. And, thanks to my daughter, I don’t do false.
I told him that I can answer some of them, but that it’s not my place to do so. It IS my place, my job, in fact, on behalf of my daughter and of all of our children, to ask them of him so that HE can answer them. So that we can, God willing, begin to understand each other. So that we can stop shouting and start listening – so that we can stop looking for compromise in this false dichotomy that we’ve set up and instead start searching for, and agreeing upon, the absolute truths hidden beneath the anger and the rhetoric and the fatal misperceptions of each other.
I left the inauguration believing in the possibility of progress, but also carrying the weight of the understanding that it will not come without our participation. Each of us has a role to play in moving us forward. Each of us has a sacred responsibility to the future to do what we can.
This is what I can do. I can try.