On Sunday, November 17, 2019, people around the world lit candles in honor and remembrance of Max Benson. The local vigil was powerful, but worldwide, the hashtag #ShineOnMax became a unifying and powerful movement to bring the world together in solidarity of valuing autistic lives.
Max was killed after being placed in an illegal prone restraint for nearly two hours at his school. Soon, NeuroClastic will cover this story in more detail, but right now the world needs to know Max outside of “the boy who was killed.”
Max was a boy who lived, a bright, vibrant, loving, curious, hilarious, creative, outgoing soul whose life had purpose and value.
I talked to Stacia Langley, Max’s mom, to get to know Max outside of the sparse, often-dehumanizing soundbytes that have punctuated the news stories about his last days.
Me: What was Max’s special interest? Tell me what Max loved to do.
Stacia: Max’s first love was numbers. He could do complicated arithmetic at a very young age. Like 5 digit problems in his head at 4 or 5. He was obsessed with so many things it would take a week to tell you about them.
Me: Why was Max called “the mayor” in your neighborhood?
Stacia: He was the funniest, most energetic person I know. He made everything so fun. It’s like my whole family is missing its sun now…
Me: What was his humor like? What did he love to laugh about?
Stacia: Fart jokes, like all human beings…. Just kidding… although he did. He also loved puns. He liked doing silly dances and being the center of attention.
Me: What do you want people to know about Max?
Stacia: 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.
Me: Was he an Old Soul?
Stacia: I don’t really know. He was a free soul. He experienced unadulterated joy more easily than the rest of us.
His giggle was the best song I ever heard.
At this time, Stacia sent me a video of Max, who was very much alive. It was a window into their home, and it leveled my soul. It was like a day in my house. Max was putting on a show. Stacia asked, “What are you wearing,” and Max responds with exceptionally flamboyant verve, with an impromptu song. “Bad guy pants” was the joyful refrain he kept repeating.
Behind the camera, Stacia laughs heartily. You can hear the love in her laughter. The respect, the joy, the gratitude. In the background, the walls look like my house– the actual walls themselves are just canvases for the kids’ crayon creativity. Their lives are– were– filled with whimsy.
Orders of magnitude more.
Me: Were your walls canvases?
Stacia: They always are. We had a bathroom like that in my childhood home, so I just took it a step further.
Me: Nothing is sacred. My entire home is a canvas.
Stacia: I am making a giant possum statue to put on our roof. We are unapologetically weird & artsy.
Me: What is the possum symbolism?
Stacia: I guess I identify with them because people don’t like them because they don’t understand them. My grief possum has babies on its back. I suppose it is about the weight of motherhood, but it is really just a funny way to freak out my neighbors. After that, I am going to do one of Max as some kind of boy king.
Me: I love irreverence so hard.
Stacia: Humor is the only way to deal with existence, because existence is fairly painful. Laughing > crying, and I consider myself an expert in both at this point.
Me: Can you offer some winning advice for people who are facing hardships and challenges that are bigger than what anyone should ever have to face?
Stacia: 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.
Me: What do you want people to be thinking about tomorrow when they light a candle for Max?
Stacia: I think I would like them to try to feel Max’s spirit, because some people might find him, and I think he would love that. But 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.
The Vigil & Beyond
Sunday, the International Coalition Against Restraint and Seclusion, along with many allies and advocates, lit candles for Max. Click here to read more about the vigil. The vigil has ended, but the hashtag, #ShineOnMax, continues. Autistic people around the world continue to relate stories of when they were abused or restrained in schools.
Parents of autistic children tell stories of how their children have been forced into restraints and seclusion. People of color know that the risks are even higher for their children and their adult autistic loved ones as totally harmless autistic behavior, like stimming (rocking back and forth), failure to speak, or atypical eye contact is regarded with suspicion and often met with violence.
Allies and citizens have called for journalists to check their language. Many articles discussing 13-year-old Max, who was only 5’3″ tall, reported that he was over 6′ tall. They referred to him as “severely autistic” and “violent.” All of these statements were ways to justify what happened to Max, who did nothing to deserve being restrained for nearly two hours while a teacher sat on him the entire time.
Hundreds of people responded to media stories in challenge to the ableist language, calling for the humanization of Max. The hashtag began to be used on other stories, too.
For Max Benson, for his mother and family, for the autistic community and their loved ones, we are asking the world to put on your #BadGuyPants and continue #ShineOnMax, challenging the dehumanizing media coverage that seeks to justify and distill abuse and death of autistic children.
We are asking that you connect with the autistic community in solidarity by expressing condolences with the hashtag #ShineOnMax.
We ask that you express your sadness and grief over what happened to Max and what has happened to many autistic and disabled people with the hashtag, #ShineOnMax.
Keep the hashtag alive as a challenge. Refuse to let the media normalize prejudice, dehumanization, and ableism against autistic children and adults. You don’t have to be autistic, you don’t have to have autistic family members, and you don’t need to be educated about autism to take a stand.
This gesture of solidarity is a metaphor of the Light of Max’s life, the good he brought to the world. It’s a goodness that didn’t end with the abuse he suffered, and a symbolic gesture that we have all acknowledged the life of Max and others whose lives ended too soon. It is putting truth to power and purposing to make the world safer, kinder, and more human for those who are different.
Shine on, Max. Shine on.
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