What Should You Do When Your Favorite Celebrity Gets Autism Wrong? - Pacific Standard

What Should You Do When Your Favorite Celebrity Gets Autism Wrong?

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Talking (and tweeting) with Kim Rhodes and William Shatner about learning to be an autism ally.

By David M. Perry

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Kim Rhodes. (Photo: The CW)

Kim Rhodes’ voice crackles with static as she calls me from her car. The actress, best known for her recurring role in the long-running show Supernatural, promises me that she’s “hands-free and breathing deeply,” but she scarcely pauses for breath as she launches into her story. Rhodes is the mother of an autistic girl, and, a few years ago, she tells me, she tweeted her support for the annual “Light It Up Blue” campaign, sponsored by the mega-charity Autism Speaks. Some of her autistic fans quickly interceded. They told her that Autism Speaks was controversial, even hated, within some segments of the self-advocate community, thanks principally to its focus on curing autism.

“My immediate response was: ‘Screw you, shut up.’ That’s a horrible admission, but that’s the truth. But because the people who came to me [are people] I know within the fandom of Supernatural, they were able to say to me, ‘Look — your actions are not consistent with who you say you want to be.’” Now, Rhodes is a passionate supporter of both individual self advocates and groups like the Autistic Self Advocacy Network.

On April 2nd, William Shatner, a.k.a. Captain Kirk, tweeted a picture of the Autism Speaks “Light It Up Blue” logo: a blue puzzle piece in a lightbulb. Things on Twitter escalated quickly, as detractors of Autism Speaks weighed in. Shatner started arguing with his critics, and, by the end of the day, he had blocked many autistic tweeters, disabled and non-disabled allies alike, and a number of journalists (including me). He blocked Ari Ne’eman, the founder and former executive director of ASAN. He blocked Steve Silberman, author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, an award-winning book on the history of autism that centers on the self-advocacy and neurodiversity movement.

The issue dominated Shatner’s feed for days, as he moved from accusations against ASAN to fighting with noted science journalists about whether—and how deeply—Autism Speaks was implicated in anti-vaccination conspiracy theories. On day four, Shatner blamed autistic folks for the whole mess, tweeting: “All I did was put up an icon & a hashtag. If they just kept quiet it would have been gone the next day until next year.” (Through a spokesperson, Shatner declined to comment for this article, citing a busy filming schedule.)

How do minds get changed? What’s the best way to challenge preconceived notions in this era when we often can’t even agree on the same facts, let alone what facts mean? Throughout the week of watching Shatner (via a second, unblocked, account), I kept thinking that there had to be some way to reach him, to help him understand the context, and why it was so troubling to his autistic fans, and to ASAN, the organization most associated with the self-advocacy movement. Whereas Autism Speaks has an annual budget of around $60 million, ASAN has just six full-time employees. I wanted him to understand he was siding with Goliath against David. That’s when I asked Rhodes to call me.

“I tried something new — actually listening to autistic people!”

Supernatural is a show about two brothers — Sam and Dean Winchester — who fight monsters. They’ve imprisoned Lucifer, killed Death, and, last season, defeated God’s sister. In between these epic arc plots, they fight vampires, ghosts, werewolves, low-ranking demons, and other scary creatures. It’s now been on the air for 12 seasons, making it the longest-running fantasy show in television history, and a top-25 show in terms of duration overall. It’s kept alive by a devoted community of fans united by, of all things, a commitment to social justice. Sure, the actors are dreamy and the quips good, but when I attended a convention in Minneapolis, I was struck by how consistently the stars and fans alike were talking about disability, mental health, and other key causes. Moreover, they were doing so in a way that focused on support for diversity, rather than a quest for a cure. The Supernatural commitment to social justice is about identity, not charity.

When Rhodes took the stage in Minneapolis, for example, the very first comment came from a woman who identified herself as the mom of an autistic child. Rhodes plays a relatively small role in the TV show, but enjoys an outsized visibility among the fans. When the woman thanked Rhodes for her advocacy work, Rhodes immediately directed attention away from herself, explaining that she had evolved in her activism because “I tried something new — actually listening to autistic people!”

Listening, Rhodes tells me, hasn’t always been easy. “It was painful to hear at first. Every parent wants to be right. Every advocate wants to be an ally. For me, it’s more important to listen to the experts than for me to be told I am an expert.” The key, Rhodes says, is that she was approached with kindness and by people with whom she felt she already had a connection, who told her, “We can see you love your kid, let us help you with the language she speaks.” When an autistic person said, “You know, I wish my mom had known what I’m telling you,” Rhodes took that seriously and changed her whole approach to parenting and advocacy.

I asked Rhodes how Supernatural generated this extraordinary community for what is, let’s face it, a niche show. She laughs and says, “Nobody fucking knows,” but it’s clear that everyone involved knows how lucky they are. They’re trying to leverage that luck to do good. Jensen Ackles, one of the stars, raises money for a Down syndrome group in Dallas (where his nephew, who has Down syndrome, lives). Jared Padalecki, the other principal, has been open about his struggles with depression and suicidal ideation. At the show’s Minneapolis convention, T-shirts — whether for sale or on fans’ bodies — were as likely to bear Padalecki’s “always keep fighting” mantra as they were “Got Salt?” or arcane symbols associated with the show.

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William Shatner attends The Hollywood Christmas Parade benefiting the Toys for Tots Foundation in Hollywood, California. (Photo: Imeh Akpanudosen/Getty Images)

Self-advocates like Ne’eman (now CEO of MySupport.com) and Julia Bascom, the current executive director of ASAN, recognize the importance of communities like Supernatural when it comes to changing minds. Ne’eman says he’s often been most successful persuading people who come from communities with a “profound respect for difference” to accept the “neurodiversity framework.” Bascom notes that generic awareness-raising is a big part of what celebrities do, and often without much information. “Identify what sort of script they’re running off,” when they share stories and causes, Bascom says, “then suggest a different kind of script.” All this advice, though, presumes a willingness to listen.

In the end, Shatner does seem to have started to listen — in his own way. After a few days, he started referring to the whole flap as a misunderstanding. He still stands by his support for Autism Speaks, noting that they now have autistic people on their board, do not officially support anti-vaccination fear-mongering or quack treatments, and are no longer fixated on a cure. He even unblocked me after some friends pointed out to him that he had shared and liked a piece I wrote about the time my daughter wanted to buy ice cream at an Autism Speaks fundraiser (spoiler: I bought her ice cream somewhere else). Sure, he’s still blocking plenty of other experts, but he’s no longer trashing ASAN. If Shatner tweets the lightbulb logo again next year, it will be from a place of better information. That’s not a bad outcome.

The lesson that change comes best from within affinity groups, rather than from external pressure, is perhaps not shocking. Challenge people all you want, but changing minds begins by laying the groundwork within your own communities. Are you prepared to hear new things, even if they’re uncomfortable? We could all benefit from being a little more like Supernatural—or like its fan community anyway. The show has way too many Apocalypses for comfort.

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