August 28, 2019

A note on blog policies

Posted in Uncategorized at 9:08 pm by chavisory

Hi everyone!

So if you’ve ever gotten around to reading my About section, you’ve seen that I have a contact e-mail address for this blog.

The reality is that I do not get around to checking this address very often. I’m trying to get better about that, but the reality is that I have kind of a ridiculous and unpredictable work schedule that often leaves me with very limited bandwidth for non-work related communication for months at a time, and if your message is time-sensitive, there’s a good chance I won’t see it in a timely manner.

A lot of the messages that I miss have been asking for my permission to share, cite, or mention my work for another blog post or article or campaign, and I just totally didn’t see it in time to respond in a useful way.

So this is just a reminder that this blog has a Creative Commons License. It’s an Attribution/Non-Commercial/No-derivatives license, and it already lays out most of the terms under which I’m okay with my work being used, but basically, you do not need my explicit permission to quote anything I’ve written, to mention it, to cite it in academic work, to link back to it, to print it out and make copies for students to read, or to use it in a way that would legally be considered “fair use,” as long as you accurately credit/ attribute the authorship to me.

I do ask that you not use it for commercial purposes, or change and then redistribute it.

Otherwise, go to town. Have fun.

(Of course, if you’re using one of my posts in an educational setting or academic work, if you’ve shared it and people have found it helpful, I would love to know about it, but you don’t need my advance permission to do it. If for some reason you need my actual full name for a citation to satisfy someone else’s requirements, then do please e-mail me. I will give it to you, but I don’t publicize my real name here.)

August 16, 2019

Betrayed on Sesame Street

Posted in Uncategorized tagged , , , , at 2:37 pm by chavisory

I wrote this story down intending it to be part of a different post entirely, about a particular set of musical experiences. I didn’t really want to be telling it for this, but here we are.

A few years ago, shortly after Sesame Street came under fire from the autistic community for its participation in Autism Speaks’ annual Light It Up Blue campaign, I was one of many people, invited through various organizations, to give feedback on development of the “See Amazing” web materials, centered on the character of a 4-year-old autistic girl.

I didn’t have any illusions that our feedback would all be incorporated or that the end result would be everything we wanted, but it was a chance worth taking that some of it would be, that we could affect on a really basic level what American children learn about autism.

And what might be some of the earliest representation of themselves that autistic children ever see.

I got very busy, and when the campaign was finally released to the public, amid a flurry of mixed reviews from the autistic and parent communities, I just didn’t have the bandwidth to engage with any of it. But some of the criticism was confusing to me based on the initial materials I’d seen, which had been deeply imperfect, but also far from being anywhere as offensive as many mainstream depictions of autistic children or characters. There were fallacies that I hoped would’ve been corrected; there were places where I hoped the focus or language would be shifted, but for a curriculum set aimed at preschool-aged children, it had had a lot of good potential. Of course different people can have sincerely different reactions to the same thing, but it made me wonder whether the final product had somehow gotten much worse than it had started.

I was too afraid to find out.

Spring of 2017 came and, once again during a week when I just didn’t have spoons to spare, the announcement that Julia would become a real muppet, and not only a web character, and another wave of commentary that I didn’t feel I could usefully engage with until I had my own opinion of the results. But I hadn’t watched any of it. I just didn’t have it in me. Although assertions like “obviously they didn’t talk to autistic adults” made me furious, as I knew that they had. I didn’t know what the impact of our contributions had been, or if it had been disregarded entirely.

Finally one morning I knew it was past time that I caught up with Julia, and clicked on a video, of Abby Cadabby and Julia singing the Sesame Street theme song together. It started with Julia alone with her bunny, humming to herself, before Abby joins her. I assumed I knew how the skit would go. Abby would join in and sing along, Julia would keep humming, and they’d finish the song together, each in her own way. Cute. Mostly harmless.

But then after Abby sang a line, Julia started singing, too, and my jaw hit the floor.

I couldn’t figure out how they’d come up with it; I had never told anyone about this yet. I had never seen this portrayed or described anywhere.

Julia’s echolalia worked just like mine.

And the message wasn’t “See? She can be included too, even though she has autism!” She just was. It was that her echolalia was just like mine, and it was just …okay.

I have seen a lot of autistic characters portrayed in media. I’ve felt genuine kinship with some of them.

And I had never, ever seen that.

And yes, the portrayal of the character and the way her story was told was imperfect in many ways, but that mattered, and it was something I wanted four-year-old autistic kids, and four-year-old non-autistic kids, and their parents and families, to see

That the way we do things can actually just be allowed to be okay.

I went back to the notes that I’d submitted to see if I could figure out if I’d said anything that could have caused this, but I hadn’t really. It was extreme serendipity, or something someone else had suggested, or that the alchemy of all of our input together had made such an extrapolation or leap of understanding possible, I guess.

Research even showed that exposure to the program measurably increased parental feelings of competence, acceptance, and hope for their autistic children’s potential to be included in the their communities.

And it made what happened next all the more a betrayal of our input and good faith.

This week ASAN announced the end of its partnership with Sesame Street and the “See Amazing” program, after the show leadership declined to reverse course from its decision to use Julia to advertise Autism Speaks’ 100 Days kit, notoriously full of stigma against autistic children and poor-quality information.

A friend asked whether any of us are truly surprised by this development, and the answer, I guess, is no, not really. But it still hurts, like so many things that happen to us again and again and again and yet still hurt, every time. Like so many things that you see and hear when you’re an autistic person at all engaged with a popular media that presumes people like you aren’t watching or listening.

But God, there was so much reason to hope this time.

I really think Sesame Street owes the autistic community, and every family for whom Julia’s inclusion had been a positive development, an explanation for this.