#ShineOnMax Becomes an International Call to End Ableism and Humanize Autistic People in the Media5 min read

Last weekend, a vigil was held in honor of Max Benson, an autistic teen who was killed at school. What started as a small local event became an international social media blitz as people from around the world connected over the hashtag, #ShineOnMax.

For nearly a year, the story of Max’s death slid mostly under the world’s radar. It was reported that Max 6′1″ tall, “severely autistic,” and that he “became violent” at school. The sheriff’s department reported “no signs of foul play” from the teachers. The story was barely a blip on the radar of social consciousness– that is, until last weekend.

The autistic community and its allies weren’t satisfied with that rhetoric. Advocacy groups like The International Coalition Against Restraint and Seclusion, spoke up and kept speaking up. Other autistic advocates called attention to the story, too, and eventually a large list of advocates, celebrities, and organizations signed on to express support and condolences in advance of the vigil.

Last weekend, while a small vigil was held in Placerville, California, the rest of the world was learning about Max Benson. A beautiful and heartfelt interview with Max’s mother, Stacia, made its way into the hearts of thousands around the world. In it, she said of Max,

I would like them to know that he was a hero. He enriched my life in ways I cannot fully articulate, but he was like a fiery star. He taught me things I could not have learned from any other person.

He taught me that happiness only exists in the moment, and that nature is the only place we really feel at home. He taught me a lot of Yo’ Momma jokes… He taught me how much we love our children. Most people think they know, as I did, but I can assure you it’s so much more than that.

Orders of magnitude more.

The interview featured a home video of Max talking about his “Bad guy pants.” His mother laughed heartily behind the camera. Later, she gave advice to people that wherever they faced seemingly-insurmountable obstacles, they put on their Bad Guy Pants™, magical pants you wear when you need to be especially brave or awesome.

#ShineOnMax and #BadGuyPants

It was an emotional weekend as #ShineOnMax became a beacon of hope, a unifying force, a light on truths, a call for justice, an expression of solidarity, an expression of grief and fear, and a refusal to let autistic people continue to be dehumanized by school systems, the media, or the justice system.

It’s clear that #ShineOnMax is a Light that is only continuing to grow brighter, too.

Special Interests

Autistic people are known for their special interests and passions. Many people took initiative the read about Max, and they learned he had a special interest in rocks. They honored that with their tweets.

And this from novelist Echo Miller, who wrote The Insiders Club, a young adult novel with four autistic primary characters.

Ableism in the Media

Others called out the media coverage of the circumstances surrounding Max’s death, which was either dehumanizing, ableist, or completely inaccurate.

Neuroscience professor Laura Dilley challenged CNN’s reporting of Max as 9″ taller and at least fifty pounds heavier than he actually was:

Parent Fears and Experiences:

Many parents talked about their own children’s experiences or the fears they have for their children:

Kim Rhodes, American actress most known for her role in Supernatural, acknowledged that the same fate could’ve befallen her beloved autistic child.

Inspired to Action

Some people were so moved by their grief about what happened to Max that they were inspired to act.

 

Faye Fahrenheit even made a YouTube video in advance of the vigil:

Intersectional Justice

While Max’s story deserves all the attention it has gotten, and all the outrage, so do all the unnecessary restraints that result in injury and death. Many called attention to the fact that people of color are more likely to be restrained and killed in dangerous restraints and systemic abuse.

Autistic Solidarity

Some of the most heartrending responses were autistic people relating so profoundly, knowing that it could have been them.

Autistic poet and Aspergian contributor Yana Tweeted to Bobby_Rubio, creator-animator of Disney Pixar’s short film, “Float,” a metaphor Rubio wrote inspired by parenting autistic children and feeling so protective that you’re afraid to let them go,

And Bobby Rubio replied,

Really, the world has gotten away with too much when it comes to the oppression of autistic people.

In the interview I conducted with Max Benson’s mother, Stacia, she asked this of the world,

I would also like people to think about a small way they might be able to help make the world a safer place for people like him. He was so good at speaking truth to power, and I think if we follow his lead we can save some lives.

And really, #ShineOnMax feels like the beginning of making the world a safer place. It feels like maybe Bobby Rubio was right, that we’re not alone. It feels like maybe more people are going to be outraged the media tries to portray autistic children as if they are huge, destructive, and soulless.

It feels like the world cares more than it did a week ago. It feels that the world is more aware. It feels that the world is more willing to listen to the autistic community.

It feels like hope. But the work isn’t done. We have to put on our Bad Guy Pants and get to work, now. Keep Max’s memory alive, and keep the hashtag alive. Use #ShineOnMax to:
challenge the media when they dehumanize autistic people,
to protest restraint and seclusion,
to express condolences for the loss of autistic lives,
to demand justice for autistic people and their families,
to resist practices which are harmful to autistics,
to show the autistic community that you want to be an ally,
to let the world know that you care about autistic people,
to connect in shared grief,
to express hope for a better future for the next generation of autistic children.

 

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