Why Self-Advocacy Matters
In early November, I went with my brother, sister, and one of our friends to see I Dont Know How But They Found Me (iDKHOW) in concert. iDKHOW was formed and is fronted by Dallon Weekes, former bassist for Panic! at the Disco. It was one of the best shows I’ve ever been to—and I’ve seen Paul McCartney three times!—but that’s beside the point.
Weekes was diagnosed with Autism and ADHD during/after the pandemic and reflected that it was like turning the light bulb on in a dark room and you can see it now. I knew this going into the concert and it shaped some of the ways I experienced the show as a fellow ADHDer.
There was one particular moment that has stuck with me. During one of the last songs, Weekes did what many artists do and made his way into the crowd. He did it a little bit differently though.
As the music faded into the background, Weekes used gestures to ask the crowd to part down the middle. Then he had a chat with his fans. Half talking, half singing, Weekes intoned:
“If you were me and I were you, and you went walkin’ through a crowded room, would you want strangers touchin’ you? Would you want them pullin’ on your hair? Would you want them tuggin’ at your clothes? Or invadin’ your personal space? Well, how ‘bout that? We’re exactly the same.”
He then proceeded to walk into the divide he’d asked the crowd to create and lead a call and response. As far as we could tell, everyone was respectful and had a great time. Back on stage, he thanked the crowd for their trustworthiness. (You can see this part of the show here at the 5:00 mark until about 7:30).
A day or so later, I was excitedly chatting about the show and described this part. I described how it was lighthearted and a bit flamboyant but taken seriously and goodnaturedly. My communication partner, with curiosity, not judgment, asked: “Why did he go into the crowd then?”
I fumbled my answer at the time and the exchange has bubbled around in my mind since then, until a few days ago.
Perhaps Weekes wants the experience of being surrounded by people who love and appreciate his art even though he obviously does not want to be touched and groped by those same people. The two are not mutually exclusive.
Perhaps he wants his fans to have the experience of him walking alongside them and singing with them and has created boundaries so that he can give them that experience without compromising his own comfort.
Perhaps it’s both. Perhaps he has his own entirely different reasons. The specifics don’t matter.
What matters is that we are not bound by what other people think about a situation. My communication partner didn’t understand the point of his going into a crowd if he didn’t want to be touched. “That’s just part of it,” was the implication, “If he doesn’t want to be touched, he shouldn’t go into a crowd.”
Except that’s not just it. And that’s why self-advocacy matters.
Weekes has found a way to advocate for what he wants— to both go into a crowd and not be touched while doing so. He’s able to do it in a way that seems true to his personality and his on-stage persona, and that is amusing and endearing for his fans.
(Side note: His wish to not be touched might have absolutely nothing to do with him being neurodivergent. It’s possible, of course, since we tend to be a bit more averse to touch and sensory input than others but definitely not the only possibility.).
It’s one of the best examples of self-advocacy I’ve seen.
On New Year’s Day, my husband and I went to Starbucks with our planners and journals and talked about our intentions and plans for the year. One of those plans was to set aside blackout dates every month. We’ve noticed a recurring trend of having our weekends fill up with back-to-back bigger events, and it was creating tension. We’re both introverts, and I’m neurodivergent. He struggles to say no to people. We would find ourselves becoming frustrated when people initiated a weekend plan or something unexpected popped up.
And then we had the realization: we weren’t advocating for our own time but were instead expecting people to think about and/or know our schedules and our limitations without us telling them. And we were becoming offended when they didn’t get it right.
As we penciled in upcoming events and designated blackout dates, we chatted about the need to advocate for those blackout dates with others. We discussed the fact that people don’t know if we don’t tell them and that it might be more selfish of us to not tell them and then become frustrated with them behind their backs.
Self-advocacy matters for everyone, neurodivergent and neurotypical alike.
Our students have a lot of specific things they might need to advocate for, ranging from their speech intelligibility to their ability to comprehend in a classroom setting to meeting their sensory needs. Even though helping them improve skills is important, giving them the power and the confidence to advocate for themselves may be even more important.
And helping them do that with some flair that fits their personality? Icing on the cake.
P.S. Showing your students the clip from above as an example of self-advocacy could be a great idea! Limit it to the designated 5:00-7:30 timeframe though—there might be some language before and after.
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