Fault Lines
Disability, accountability, and the biases we don't even know we have
Hi! I’ve been quiet here for a bit because things have been really crazy as I finalize my book which is due to the copy editors in a couple weeks. It’s so busy but so exciting, and I can’t wait to share it with everyone!
As I wrap up writing, there is one major theme that I have been thinking a lot about which is: we’ve made a lot of progress reducing stigma around diagnoses, but we haven’t necessarily reduced stigma around the underlying struggles. As a result, diagnostic labels are often necessary to provide people cover, grace, and a framework for making sense of the things in life that are really hard. For example, it’s understandable to fail an English test if you’re dyslexic—it’s not your fault, and it doesn’t mean you’re a terrible student—but if you don’t have that diagnosis, then you don’t have an explanation when you struggle the same way. I don’t say this to sound patronizing or to cast doubt on the validity of the diagnoses; instead, I’m pointing this out as a meaningful aspect of diagnosis that many people find really helpful and that clinicians should take into account when using diagnostic labels (or not).
At the same time, I’ve been sitting with a worry that diagnosis can sometimes slip into something that forecloses growth. If dyslexia means something is wrong with your brain and you just can’t read, full stop, there’s a ceiling on what you can accomplish. If ADHD means something is wrong with your brain and you just can’t manage your time, same problem. I think we have to be really intentional, especially when we’re working with kids, about holding competing ideas at once: this is real, this is hard, this is not your fault AND you can learn to read, you can develop the executive function skills you need, you are not stuck. Even if we don’t frame this as assigning fault or personal responsibility, we should frame it as maintaining agency, and we should celebrate and validate the hard work inherent in treating these disorders.
Then I read this piece about Tourette’s Disorder. TLDR: At the BAFTAs, John Davidson, an activist with Tourette’s whose life inspired an award-winning film, involuntarily shouted a racial slur while two Black actors were on stage presenting an award. The audience had been warned in advance that this sort of thing might happen, but even so, Davidson left out of shame and embarrassment and later issued a public apology for what happened. The piece argues that shouting the slur wasn’t Davison’s fault, and he never should have been expected to apologize for something he didn’t choose to do and couldn’t control.
I’ll be upfront that I did not follow this story closely and I am not a TD expert. But I found myself agreeing with the author’s framing and feeling that an apology wasn’t owed. And then I caught myself because I don’t feel this way about other disorders. I think, for instance, a kid with dyslexia who avoided weeks of schoolwork should be required to make it up, and a kid with ADHD who impulsively punched someone on the playground should absolutely have to make amends. Of course I think both of these kids should be given grace, empathy, and support, but we should also maintain high expectations. All of it, together, simultaneously. Both/and, not either/or.
So why does this story about TD feel different to me? Why does this diagnosis specifically feel more like something external that happened to this person, something they’re not responsible for changing? It’s not that all these diagnoses are fundamentally different in kind. They are all neurodevelopmental disorders. They all have identifiable neural correlates. They all exist on a continuum from normal to abnormal (yes, even TD; transient tics, for instance, are common in the general population).
I’ve been turning this over and I think it might come down to treatment. With dyslexia and ADHD, we have solid, evidence-based interventions, and we routinely see kids with these diagnoses make real gains. With TD, maybe the general impression (even if that impression is not entirely accurate) is that the treatment picture is murkier, and maybe that’s quietly shaping my intuitions about agency and responsibility in ways I haven’t previously examined.
Maybe the difference is also familiarity. Dyslexia and ADHD are far more common than TD, so we encounter more people who have them, we have more personal experience with them, and that shapes our impressions of what these disorders look like and what people with them are capable of.
I don’t have answers here, just questions, and my mind is currently mush. But I think it’s worth examining the possibility that our intuitions about disability, agency, and responsibility are less principled than we’d like to believe, and more shaped by exposure, treatment optimism, and our own unexamined biases than anything else.
This is such a salient topic in my line of work, especially when college and grad school essay season comes around.
Can't wait for your book!