An important recap and analysis of the past several months in the autism communities from Michael John Carley of GRASP. One of his main focuses is the recent, and unfortunate resurrection of the "Competition of Suffering":
Through the mid-2000s, the Competition of Suffering was fierce. Militant spectrumites and angry parents of significantly-challenged kids went to great lengths to invalidate the seriousness of the others’ experiences. And outside the anonymity of the internet, parents of spectrum kids might meet at a playground and start sharing stories, ending when the parent of the more-challenged kid would exclaim to the parent of the less-challenged kid; “Oh, what you’re going through is nothing.” Somewhat akin to the counter-productivity of ancient, light skin vs. dark skin arguments, these battles for pity supremacy put the stamp on this being our most dysfunctional period. But around early 2010, after the “I Am Autism*” debacle, things finally cooled off to at least the degree where there was shame bestowed on someone in a position of responsibility who irrationally shot off at someone on the other side of the spectrum fence. People were learning to share.
Why has this heated up again, with things like Autism Science Foundation founder Alison Singer attacking the very idea of autistic people being a part of decision-making about autism?
Carley thinks the change in autism diagnosis is to blame, and I enjoyed his intelligent explanation of why.
More important is what he says we need to do about it:
1) We need to leverage our power to create negative consequences for such damaging and inaccurate media coverage (Ha-ha. Pipe dream, I know).
2) We need overwhelmed people to not have so much opportunity to write articles, or have leadership roles in prominent organizations—Let them appropriately voice this venom at home, with friends, or in a support group setting instead.
3) We desperately need the more enlightened journalists, and the more emotionally-together parents to speak out more, and police their own. And
4) that we stop, stop, stop using the ability to communicate as a measuring stick for happiness.
Zoe Gross is one of the people featured in the documentary Citizen Autistic which I posted earlier today. She is also the subject of a wonderful profile in Vassar's Alumnae/i Quarterly. Zoe talks about the accommodations that allow her to succeed in college and how she became involved in autism advocacy.
She describes the world she wants to help build as a professional advocate:
“The biggest myth I’d like to bust is that autism is bad,” she explains. The net effect, Gross says, is that the general public “writes off [autistic people] as less than a person.”
“What I want people to know is that autism is different,” she says. “Just as we have different races, genders, sexual orientations, abilities, and disabilities. Autism is part of human diversity and just as valuable.”
Via Mama Be Good.
William Davenport of Talk Story Films, who made the wonderful documentary "Too Sane for This World", has made a new film called "Citizen Autistic", about the autism rights movement. Its featured subjects include Ari Ne'eman, Zoe Gross, Robyn Steward-- and me! I love the way I come across in this movie and the fact that I get to talk about thAutcast in it. Lots of people have ideas about Ari being some kind of fire-breathing radical, but he's a wonderfully sweet, smart guy who cares about all kinds of people, and you really get to see that here. Zoe is one the emerging leaders in autism advocacy, whose contribution to a meeting with President Obama is a highlight of the film. Others are a meeting of AASCEND in San Francisco and Robyn Steward's dissection of an Autism Speaks walk. Robyn works with autistic people like herself.
The film is nearly finished, and you can see the current version above. You can also donate to help distribute the film. This is a movie we really want shown in film festivals, and the entry fees can cost thousands of dollars. Please watch and please donate if you can.
How I love to hate you.
Today, Slate answers the question "What if the media treated LGBT people the way they treat autistic people?" by publishing a post from Quora(!) and titling it "What Is It Like to Have an LGBT Child?"
The title is part of the problem. Although this piece of writing emerged from a general discussion about parenting LGBT people, it is about one parent's experience of raising a gay son. Just like raising a boy who is diagnosed with Asperger's syndrome in middle school is not very much like raising a non-speaking autistic girl with intellectual challenges, raising a gay son is not very much like raising a transgender girl. This mother probably does not mean to present her experience as anything more than just that-- her experience-- but the way it is framed suggests that it is more universal.
Her attitude is basically great. She loves her son and has no trouble accepting him for who he is:
David was very definitely born gay. One of his favorite words was "pretty," which he would chant over and over while stroking my clothing. He liked to do waaaay too many things most folks consider "little girl" activities, and he didn't care for many "little boy" activities, at all.
Well, we didn't care. Dave's Dave—cute, funny, scarily intelligent, curious, and could put ideas together in a way that got him in more trouble than not. In junior high, he told us about a girlfriend, and went to a few dances, but we didn't do any sigh of relief or anything because we really didn't care one way or the other. His two brothers didn't care, either, and they were 17 months older and younger; it just wasn't something we made any kind of deal out of.
I would love for all gay kids to have parents who are this accepting, and I think getting narratives like this out to the public is still important.
I would not bother to complain about the problems with this piece for a gay audience-- they don't matter very much because this is not typical of how gay people are seen in the media. Reporters are more likely to speak to gay adults about gay rights issues than to ask our moms about them. There are gay people with TV shows who can talk to their audiences about LGBT issues. The HRC has a bigger budget than PFLAG.
These things are not true for autistic people. Reporters are much, much more likely to talk to our parents than to us. Policy about autism is set by organizations dominated by parents that give autistic people no more than a token presence. They would never think about holding a government hearing on autism and inviting parents of autistic people as an afterthought.
We are not equal.
Gay people and straight people are not equal, either, and that matters more to gay people than to straight people.
Even to our loving and accepting parents:
Apparently, now that his state has passed gay marriage laws, Dave and Rob will be getting married soon. That's nice, I'm glad they get a chance to be like everyone else. But to me, it doesn't matter—that's Dave, and that's Rob, and that's fine with me.
Benign indifference to marriage equality is not a pro-gay position. And Dave and Rob will not be like "everyone else" because they get to be married in their state-- the Defense of Marriage Act still means that they will not have federal marriage rights, and those are the important ones. Just because Dave has the same status as her other children to her, that does not mean he has equal status in the world.
And this "that's nice, dear" attitude would never get marriage laws changed if people who held it made all the decisions about policy.
To this mom, her son's gayness is not important, and she has a hard time respecting the idea that it might be important to him:
So, I think for us it worked well because no one really cared—except Dave, and he never thought he was hiding some big secret, he just hung around with folks who told him how traumatic or life-affirming or soul-cleansing coming out would be, so he wanted to try it. I always get a slight cringe when I think that I ruined that for him—but forevermore! Why would he think we cared? We always supported him because he was Dave, not because he was gay
That's the same voice that says, "My son is not autistic. He has autism, but it does not have him."
It's the voice of someone who has accepted their child despite a difference.
It is not a voice that can or really wants to advocate for making people with that difference equal.
And, again, not a big deal for gay people, because our voices are seen as being more important than our parents when it comes to making decisions about policy.
A VERY big deal for autistic people, who are still usually seen as either being not competent enough or too competent to have valid things to say about autism.
Congratulations to Rosie King and the rest of the people between the wonderful BBC production "My Autism and Me." When the first international Emmy Kids Awards were announced last Friday, it won in the factual category.
Watch it! It's good!