Saturday, August 29, 2015

Liz Feld and Autism Speaks: No, Really, You Need to Listen

Shannon Des Roches Rosa

Liz Feld may be the President of Autism Speaks, but her recent A Call for Unity letter is not exactly presidential
. Unless your idea of a good President is someone unable to take clues from the majority of the people they are supposed to be leading and serving. Ms. Feld's letter is as tone-deaf and wrongheaded as then-President George W. Bush feeling insulted by Kanye West's post-Katrina remarks that Bush "doesn't care about Black people" -- instead of asking himself why Kanye was so outraged.

Feld's letter is an equally clueless, defensive, and dismissive response to NeuroTribes author Steve Silberman's Los Angeles Times op ed Autism Speaks Needs to Do a Lot More Listening, in which Silberman critiques Autism Speaks outright on its leadership, community outreach, and research investment practices.

Feld rarely addresses Silberman's points directly (she doesn't even link to his article), choosing instead to writing a promotional piece about all the good she thinks her organization does -- based on its own yardsticks. And she completely ignores Silberman's observations about exclusion and representation, such as, "Imagine a world in which the leadership of the NAACP was all-white; now consider that not a single autistic person serves on the board of Autism Speaks. This absence makes itself felt."

I am the parent of high-support autistic teenager. And this is what I believe being a supporter of, a loved one to, or a reporter on a community one does not belong to requires: a specific humility mandate to listen to the people in that community, and put them and their concerns first. That doesn't mean ignoring the concerns of parents, supporters, or organization heads. But it does mean letting autistic people themselves lead and guide autism efforts.

Which makes it doubly insulting when Feld goes on to prove Silberman's statement that "The people most often sidelined or excluded from the public discussion are autistic themselves. It is often assumed that the experts, or the parents of people on the autism spectrum, will do the talking in their stead." Feld's Call for Unity completely omits autistic perspectives, while including and prioritizing parents' voices and talking about the importance of "families" -- as though individual autistic adults are incapable of having a real opinion.

And that's the real problem. As autistic activist and parent Lei Wiley-Mydske tells Feld in the A Call for Unity comments:
"It's not just Steve Silberman's point of view. Actually Autistic people have been saying this for YEARS about your organization. Nice of you to finally listen when it's a non Autistic person speaking. It just shows how much you continue to disrespect us and why there can never be unity as long as you continue to erase our voices."
Other autistic critics of Autism Speaks, like M. Kelter, point out that this lack of unity is actually a positive sign, for autistic people:
"I like division. I like what it represents. In the context of discussions about autism, division means the old [negative] view has some competition. And yes, that's going to make some people uncomfortable, but that's okay. You don't need to be comfortable.
"You just need to make space at the table."
Admitting that one has made -- and can learn from -- misfires is not easy. It takes a lot of that previously mentioned humility. But if Feld truly wants to be of service to her community, I'd advise her take a cue from Cara Liebowitz on learning from one's ableist (disabilty-discriminatory) mistakes:
"...if you screw up, well, it happens to the best of us. Just apologize, ask what you can do to make it right, and make a conscious effort not to make that mistake again in the future."
I'm not going to hold my breath, though. Autism Speaks has a lot of apologizing to do. A lot. So until they start listening -- something they've shown very little ability to do -- the criticism will continue. 

A photo posted by Boycott Autism Speaks (@boycott_as) on
[Image: Dark textured background. Light text reads:
"Autism Speaks wants "unity" without addressing a single criticism of their organization by actually Autistic people.
Unity can only come when Autistic voices are centered, when Autistic lives are valued and when Autistic people are treated with respect and dignity.
Autism Speaks, if you want unity, that's where you start.
We're waiting......
‪#‎BoycottAutismSpeaks‬ "]

1 comment:

Anonymous said...

In terms of the funding for adult services, let's look at the math. All the numbers come from Liz Feld's blog post.

$560M Total Private Funding
Adult Services as a percentage of total $560M
$2.25M Adult Programming 0.401%
$1.2M Adult Services 0.214%
$0.550M Post Secondary 0.0982%
Total Adult Services $4M 0.714%

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