Last weekend, a vigil was held in honor of Max Benson, an autistic teen who was killed at school one year ago. 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. Eventually a large list of advocates, celebrities, and organizations signed on to express support and condolences in advance of the vigil.
Last weekend, while the small vigil was underway in Placerville, California, lots of people all over the world were learning about Max Benson after reading a beautiful and heartfelt interview with Max’s mother, Stacia. 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. When asked what advice she might give to people facing seemingly-insurmountable obstacles, she had this to say.
I am so glad you asked me that. Bad Guy Pants™ are magical pants that you can put on when you need to be especially brave or awesome. They are perfect over big girl (boy, person) panties, unless you have sensory issues, in which case they work just as well commando. I will be wearing mine at the vigil tomorrow.
This story wasn’t flying under the radar anymore. People were inspired to don their #BadGuyPants and speak out on social media… and it’s still going.
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.
This was last year and i never heard of it til now?! Wtf… no gif for this, it seems too wrong. #ShineOnMax may he RIP beloved max— Dotti (@autistic_dotti) November 18, 2019
It’s clear that #ShineOnMax is a Light that is only continuing to grow brighter, too.
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.
(Gif: a candle burning in the midst of a circle of rocks. Because Max Benson loved rocks and might well have devoted his life to them had it been allowed to continue. #ShineOnMax)— Chris's Train of Autistic Thought || #NDWriters (@AutistTrainGuy) November 18, 2019
And this from novelist Echo Miller, who wrote The Insiders Club, a young adult novel with four autistic primary characters.
Max Benson liked rocks. I lit his candle near a slab of rainbow fluorite. I began collecting rocks a couple of years ago. I wish he was still around to teach me about them. Gone too soon. Why? Bc impatient, ignorant people won’t even try to understand autism. #ShineOnMax pic.twitter.com/Rikue0rije— Echo Miller (@MillingEchoes) November 18, 2019
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.
I’ve noticed with autism that you’re either: “severely autistic” which means you aren’t deserving of respect. Or you’re “high functioning” which means you’re totally normal and need to quit lying. It’s very disturbing to me. #ShineOnMax— iykyk (@angry_teen01) November 18, 2019
News clarified Max was "severely autistic" What do authors imply by the word severe? Was Max deserving less respect- shorter life? Max was killed in his school, by his teacher and we should all be very very angry and worried. #ShineOnMax .. when will we learn to do better? https://t.co/2GrLzxYoW8— Dr Georgia Pavlopoulou (@JoPavlopoulou) November 17, 2019
Max, you have been painted by the news as "severely autistic.” This reads to me as people implying you were less deserving of respect, bodily autonomy, and the outrage that should follow a teacher killing her student while others watched. #ShineOnMax pic.twitter.com/JKjv8KFAGp— NeuroClastic #RedInstead in April (@NeuroClastic) November 17, 2019
Neuroscience professor Laura Dilley challenged CNN’s reporting of Max as 9″ taller and at least fifty pounds heavier than he actually was:
To @CNN – December 2018 article you report the boy was 6’1” but the mother said he was 5’3”. The website for the El Dorado county Sheriff’s office, linked to from your article, also reports incorrect information about the boy’s height and weight. See Sacramento Bee.— Prof. Dilley (@laura_greenaura) November 14, 2019
Parent Fears and Experiences:
Many parents talked about their own children’s experiences or the fears they have for their children: https://twitter.com/rosemcarreiro/status/1196511536979828737?s=21
Kim Rhodes, American actress most known for her role in Supernatural, acknowledged that the same fate could’ve befallen her beloved autistic child.
TW— Melanie Creane, CAS (@Melani_e_) November 17, 2019
My 6 year-old #Autistic son is anorexic
If just one adult or even teen, pinned him on his stomach, face down
he'd suffer a cardiac arrest within moments
restraint would fracture his frail body within seconds
Restraint must end
Autistic ppl are HUMAN#ShineOnMax
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:
While Max’s story deserves all the attention it has gotten, and all the outrage, so do all the unnecessary restraints that have resulted 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.
And only those of us that are white have the privilege of experiencing these stories as rare, exceptional, sensational, outrageous…— Rua Mae Williams (@StarFeuri) November 17, 2019
So light a candle for Max. And light a candle for the kin that never made the news. #ShineOnMax
Some of the most heartrending responses were autistic people relating so profoundly, knowing that it could have been them.
When I was 13, rocks were my special interest, just like Max.— Steve Asbell #StayInReachOut (@steve_asbell) November 17, 2019
When I was 13, I went to a private school, just like Max.
When I was 13, I was punished for my autistic traits… although not quite like Max.
Because one day, I survived to become 14. #ShineOnMax https://t.co/tJGWWy8oSN
Autistic poet and Aspergian contributor Yana Tweeted to Bobby_Rubio, creator-animator of Disney Pixar’s short film, “Float,” a metaphor inspired by Rubio’s own experiences parenting his autistic son, Alex,
Thank you, @Bobby_Rubio, for advocating for all of us who have been packed with shame for being who we are. Especially today. Thank you for being vulnerable in your journey to acceptance & unabashedly celebrating your child. #Float #AllAutistics #RepresentationMatters #ShineOnMax— Yana – To Exist is to Resist (@APrismUncovered) November 18, 2019
And Bobby Rubio replied, https://twitter.com/Bobby_Rubio/status/1196299227086782464?s=20
It’s undeniable that the world has gotten away with too much when it comes to the oppression of autistic people.
Remembering Max Benson today, an Autistic person murdered by his teachers. People with disabilities are murdered by caregivers frequently – over 650 times in the past 5 years. Max Benson deserved better, and so did all the others. #ShineOnMax— Jessica Benham (@jessicalbenham) November 17, 2019
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.
With #ShineOnMax, It feels like the world cares more than it did a week ago. It feels like the world is more aware. It feels like 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,
-protest restraint and seclusion,
-express condolences for the loss of autistic lives,
-demand justice for autistic people and their families,
-resist practices which are harmful to autistics,
-show the autistic community that you want to be an ally,
-let the world know that you care about autistic people,
-connect in shared grief, and
-express hope for a better future for the next generation of autistic children.