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.
Asher is holding his first political office -- class treasurer. He smiles. "No one ran against me, and I was pretty satisfied because I had to put in no effort, or speeches, or anything."
And while he gives the electoral edge to Obama, don't expect a ringing endorsement. "I am in favor of Obama being re-elected. I mean I don't like him that much, but the problem is I don't like the alternative either."
All that knowledge -- but no girlfriend, yet.
"I wish I did but I don't," Asher said. At 14, he is smart enough to know, there are some things even more complicated than politics. "I probably don't have good enough social skills for starters. I'm not exactly a charmer. I'm not Bill Clinton."
The National Forum on Disability Issues is happening today in Columbus, Ohio:
The National Forum on Disability Issues is an historic nonpartisan event. The 2012 event builds on the success of the first ever forum organized by the disability community in 2008. The forum will focus on the disability positions of the 2012 Presidential candidates; Edward M. “Ted” Kennedy, Jr. and Rep. Cathy McMorris Rodgers (R-WA) are speaking on behalf of their respective parties to present their campaign’s positions on matters relating to Americans with disabilities. Ohio Senate Republican nominee Treasurer Josh Mandel will participate, as well as Rep. Nancy Garland (D-New Albany) on behalf of Ohio Senator Sen. Brown. The speakers will be given the opportunity to provide their positions on a wide variety of disability issues directly to the disability community. Frank Sesno, director of the School of Media and Public Affairs at the George Washington University and former CNN White House correspondent, anchor and Washington bureau chief, is serving as Forum moderator.
You can watch a webcast by registering here.
Both Autism Speaks and the Autistic Self Advocacy Network are among the event's sponsors.
I made this:
"I want to know why my brother has autism."
"I want my sister to stop telling people that I'm a public health crisis."
Autism Speaks put out a video yesterday. It looks different from what you may have seen them do in the past. For one thing, it prominently features autistic adults speaking for themselves.
Are people going to find plenty to take issue with? Yup. They always will. Autism is far too sticky and messy and God, it affects us all in so very many different ways – I can imagine almost nothing that will please everyone in one fell swoop. But is it a hell of a closer? Yup. Is change happening? It is.
The other night, I listened to Liz Feld, the President of Autism Speaks, speak to a room full of some 220 people. She talked about autistic young people transitioning to adulthood. She talked about transportation and housing and employment. She talked about bullying and respect. She talked about research as an avenue to make life better – to mitigate the challenges of those on the spectrum. She talked about returning money to the communities from which it comes – supporting services for autistic individuals and their families.
Speaking to her at the end of the evening, she said, “See, Jess? I listened.” I told her I’d heard it. That I’d heard my words reflected back to me.
She looked at my friends Judith and Jersey who were standing with us. “She taught me,” she said, “that our words matter.”
I don't care what he does or does not do for the rest of this administration. Because of this picture, part of me will always love President Obama. This image matters more to me than him appointing the first autistic person (ever) or saying he supports gay marriage (finally), even though I'm autistic, gay, and white.
The boy in the picture is Jacob Philadelphia:
“I want to know if my hair is just like yours,” he told Mr. Obama, so quietly that the president asked him to speak again.
Jacob did, and Mr. Obama replied, “Why don’t you touch it and see for yourself?” He lowered his head, level with Jacob, who hesitated.
“Touch it, dude!” Mr. Obama said.
As Jacob patted the presidential crown, Mr. Souza snapped.
“So, what do you think?” Mr. Obama asked.
“Yes, it does feel the same,” Jacob said.
I wish every little boy who looks like the President could touch his hair, if he wanted to.
And I wish every little girl knew what it was like to see someone like her as president, too. And could touch her, too, if that made it real. And know that someone just like her can be anything.
We need to see people like ourselves.
Especially when we are young.
Especially when who we are is devalued.
And maybe especially when we tend be visual thinkers who are very literal in our understanding of language.
I was reminded of Jacob and President Obama, by Melissa Harris Perry's recent segment on Black hair.