By Ben Brown
While diversity has always been a goal of Tourette's Podcast, I could certainly do better work toward it. That’s true not only in the guest lineup but in the narrative discussion as well. Thankfully, better informers exist.
She gave a well-put reminder in a recent Twitter thread identifying problems in how we message our own disabilities and experiences -- yes, even in the Tourette community.
In a recent post here, we broke out the figure that about 90 percent of Touretters have at least one comorbid condition (ADHD, autism and so on).
"Yo," Jaleesa posted on Monday, "I just recently found out that about 12% of people with #Tourettes have an intellectual disability."
(That's a figure I've seen, too, from the U.S. Centers for Disease Control and Prevention.)
She continued: "That seems like a lot of people our community leaves behind & even actively excludes when we brag about how smart we all are."
Yeah. The word "intelligence," or some synonym of it, comes up a lot in TS talks, including on Tourette’s Podcast. And it's nothing to doubt on its own. But let's be careful, Jaleesa reminded us.
"Sometimes we even use our intelligence as a reason we shouldn't be discriminated against or mistreated," she noted in her thread. "That's kind of really messed up when you think about it."
We can do better, Jaleesa said, at including people who have TS as well as an intellectual disability.
"In fact, in general, we need to do better at including people with Tourette's who aren't the most privileged, socially acceptable Touretters," she declared. "People who are trans, who swear, who can't work, who are different races besides white, who don't speak English, etc."
In fact, in general, we need to do better at including people with Tourette's who aren't the most privileged, socially acceptable touretters. People who are trans, who swear, who can't work, who are different races besides white, who don't speak English, etc.— TheDisabilityEnthusiast (@twitchyspoonie) May 28, 2019
While I’m sure none of us brings any oppressive intent to our TS messaging (I sure hope not), these awareness reminders are golden. We've talked plenty on this podcast about coprolalia and the problem of Touretters saying problematic things like, "I have TS, but not the swearing kind," which essentially translates to, "Don't worry, I've got a more acceptable brand of it, and you can enjoy my company knowing I won't embarrass you in the food court."
Before starting this podcast, I was, in some variation, guilty of that kind of thinking, even as I seldom ever acknowledged my TS in open company. I was embarrassed of it in general, and didn’t want the associations. Which is, of course, not a good mentality, marginalizing good people on my own team. Realizing how ridiculously wrong I was on that was one of the most important evolutions of thought I’ve had as a Touretter — and indeed many Touretters have told me they no longer try to win acceptance via distancing themselves from the coprolalia community. That’s awesome.
I, myself, have learned so much from the people I’ve encountered on these episodes and have come to understand that awareness efforts should spread within the TS community, too, not just outside it. I'm so grateful to people like Jaleesa and others — including especially my wife, a vocal advocate for her Native American and LGBTQ+ communities — who are improving character with better awareness framing and perspectives that I wouldn’t get from mainstream conversations. (I also think back to Season 1, Episode 3, where Melissa C. Water and I covered the coprolalia thing.)
"Touretters are diverse in every way," Jaleesa concluded. "Our support groups, online spaces, organizations, representation, etc., should reflect that."
I haven't audited any Tourette group out there on this, and don't have plans or time to. But I can agree with her. We can always do way better. The key is actively hearing out different perspectives, even ones -- or especially ones -- that challenge how we already think. Which is what the Tourette community has long asked the broader world to try.
With all of this in mind, if you ever hear me get off track, show weak judgment or fail to consider something important for the community, or if I ever just flat-out get something wrong, please let me know. Improvement doesn't have a finish line. It’s always something to run.