Saturday morning ..
Later that afternoon …
And finally …
I’m not sure how to write about that day – about attending the meeting, about being in, what felt to me, like that sacred space. I was nervous going in. I didn’t know what to expect, which, in and of itself, can be nerve-wracking. But more than anything, I feared that my presence might somehow compromise the sanctity of the space. The freedom to do, be and say anything in the comfort of knowing that everyone around you shares your neurology, and with it, at least some of your experiences.
But I wanted to be there. It was an honor to be asked to attend the meeting — to not just sit behind my screen and write about being an ally, but to show up as one, live and in the flesh. To listen — really, truly LISTEN to what was going on in that room. To hear what their lives are like. Not in blog posts or e-mails, not in personal messages or even phone calls, but face to face. Meeting people “in real life” is different. It’s transformative. I wanted to be there. To offer myself up to help their cause in whatever ways I might.
But I am struggling with how to write about it. Because just as I felt that walking into that room might change it, I feel too as though my writing about it might make it seem less sacred, or God-forbid, less safe. But I have the blessing of the amazing people who were there, and so, I will write about just a couple of the thousands of things that I took away from that meeting.
Watching the interaction around that table was a lesson in humility. It looked like no other meeting I’ve ever attended. People took turns talking. They looked out for each other — when someone was trying to interject but couldn’t find his way into the conversation, someone else would alert the speaker to cede the floor. Every time.
When one person began to appear agitated, rocking in his chair with far more vigor than he had before, a hand went out to him. And a gentle question — “Are you okay?”
People were aware of each other, tuned into each other, in a way that I rarely see in a room full of NTs competing for airtime. It was beautiful. It was what we all should aspire to be.
Unemployment and underemployment are staggering problems. People who are eager to work and capable of working aren’t. People who have Master’s degrees are stamping letters in mail rooms. We have to figure this out. For them, and for us. And that doesn’t just mean software companies reaching out to autistic programmers, as wonderful a start as that may be. It means support – real programs with real help. It means understanding – job coaches and recruiters learning about autism (not the word, the people). It means an end to discrimination and abuse in the workplace so that everyone has the opportunity to contribute what they can and reap the reward of their participation. Period.
Housing. We know this. We have to fix this. We just have to.
I was blown away by the level of civic engagement in that room. You can argue of course that it’s to be expected in that the meeting itself was of an advocacy group, so, well, yeah, they’re advocates. Not exactly shocking. But ..
It was the degree and breadth of their advocacy that I found incredible.
I once wrote, There’s a desperate misperception in the autism community — I’d go so far as to call it a paralyzing fear in some corners — that so-called ‘high-functioning’ self-advocates (a term which I abhor, but which, for the specific purpose of this discussion should be read as referring to people who are verbal, articulate and able to effectively and eloquently present their case in Washington) speak only for those like themselves. That they can’t possibly understand nor empathize with (yeah, I said it) the needs of those more severely impacted by autism. That their speaking up for their themselves and their needs will leave those with different, and at times more exigent, needs behind.
I thought of those words as I sat in the meeting, listening to conversation after conversation, update after update, about the myriad advocacy efforts in which they are involved around the state and around the country. The level and wingspan of their involvement is incredible. Each and every person at that table was advocating for things far beyond the realm of what we might call self-interest. And this wasn’t just the verbal fighting for the nonverbal, as it were. This was advocacy throughout and surpassing autism: Insurance reform. Social Program reform. Legal reform. Disability Rights advocacy.
This was far, far bigger than self-interest. Unless you see, as everyone in that room so clearly did, that our self-interest is indeed served by fighting for the rights of the entirety of the human community.
Inspiration (keep reading, it’s not what you think)
I was blown away by how much everyone in that room is doing, day after day, to make our world a better place. I was inspired by their efforts. Not because they are autistic, or, as one young woman told me she prefers, have autism. But because they see what needs to be changed and they are up off their asses and fighting for that change. They are making their way to the capitol day after day. They are testifying. They are working on bills and actually creating the language that will become law. They are DOING the thankless and exhausting work that so many of us TALK about some mystical someone needing to do. They are stepping up to be that someone. And that inspires me.
There is something about the autistic expression of joy that simply makes me really happy to be human. I don’t know how else to say it.
I made new friends. The kind that feel, within minutes, like old ones. The kind whose gentle spirit and well of generosity you feel across a table. The kind who draw you in because you want so much to be in their presence.The ones who will cross the room and wrap you in the warmest, most comforting hug when you get emotional trying to say, “Thank you so very much for having me here.” Actually, I got through that part; it was when I said, “I can’t wait for the day that Brooke can come, if she is so inclined, and join a meeting like this. And I am so grateful that you all will be here for her when she does,” that I broke down and found myself in the sweetest, most gentle embrace.
I am overwhelmed with gratitude. For the invitation, for the welcome, for the warmth, for the openness, for the friendship. And above all, for all the work that these amazing people are doing to make life on this spinning globe better, not just for themselves, not just for my daughter, but for all of us who walk together toward the future.
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