“It’s an ethical mistake whenever we sacrifice the possible in the name of the probable. As national nonprofits, like government so far, we too have failed to lead. Our centrists have frequently been too hesitant, but more damaging are the militants on opposite ends of the controversies who have pandered to their members’ anger, anxiety or depression with alarmist rhetoric, misinformation, fight talk, and all this encouraging the search for a bad guy — somebody to blame — thereby pouring gasoline on the fires of the people who are looking to us for leadership instead of helping them with messages of acceptance, respect, openness to a path that may be different from what was expected, and helping them get the services they need.”
Michael John Carley GRASP
“I’d like to begin with a story. Earlier this year I was visiting a service provider in New York and I happened to meet a young man my age — we’ll call him Joe. And Joe is autistic like me. But unlike me, Joe doesn’t speak. He had come in with his father to try and find a job and I had the chance to sit down with him and his dad and ask some questions. And Joe, despite not speaking, found ways to be very actively involved in that conversation. He pointed at what he was interested in, shook his head at what he wasn’t. He had plenty to say and few people had ever bothered to pay attention. No one had ever given Joe the simple support of a communication device. That technology exists — it has for years; we just don’t invest in it. I think about Joe a lot at times like this because the current autism research agenda largely ignores his needs.”
Ari Ne’eman ASAN
Ed note: That was Ari’s opening salvo.
I took the time to transcribe it for a reason.
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.
But that was Ari’s OPENING. It was the FIRST thing he said when he had the opportunity to speak to those in a position to affect change.
And then this was one of the last …
“I’m not here to speak for all autistic people; that’s impossible. But I am here to speak for the right of every autistic person to get the support they need to speak for themselves …”
Amen, Ari and Michael John.
And thank you.
On behalf of my daughter, on behalf of our community, on behalf of all of us as a society who have to do better at caring for and respecting one another …
Ed note: Any errors in transcription are unintentional. Please point them out if you find them.