Principled, Pedantic, Non-compliant Canary

“I have my principles and am pedantic, and therefore I will not do it.”

Source: Silberman, Steve. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (p. 96). Penguin Publishing Group. Kindle Edition.

Readwise surfaced this quote from NeuroTribes, which rolled film on a succession of flashbacks of professional regrets, but also on an appreciation of my canary moments.

Autistic man Freestone Wilson suggested in the 1990s that autistic people are functioning as the “miners’ canaries” of civilisation. When the air in the mine is poisoned we do not prevent canaries being born in case they suffer from the poison and upset us: we clean the air or close the mine.

Source: Discussion paper on eugenics and diversity

Autists are like the canary in the coal mine of mainstream society. We are amongst the first who are affected by pathologically hyper-competitive cultures.

Source: What society can learn from autistic culture | Autistic Collaboration

…at the same time, Asperger insisted that the non-compliance of his patients, and their tendency to rebel against authority, was at the heart of what he called “autistic intelligence,” and part of the gift they had to offer society.

Source: THINKING PERSON’S GUIDE TO AUTISM: On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies

And, take my word on this, no one can identify and rebel against an unfair system as efficiently as a kid or adult with ID, except perhaps an autistic person. They know the system is unfair!

Source: PBIS is Broken: How Do We Fix It? – Why Haven’t They Done That Yet?

Some of those pedantic principles were part of an inchoate affinity for structural ideology and reflexive disdain for deficit ideology that I’ve only recently gained the vocabulary and framing for through neurodiversity and disability rights communities.

Imagine that you have a neurodevelopmental disability that gives you some challenges with social skills and possibly the occasional rigid adherence to things like truth and fairness. Chances are good that you’ve been explicitly and implicitly told that you are pedantic, rude, blunt and not considerate enough of others’ points of views for your whole life.

Source: I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder: A Memoir: Kurchak, Sarah: 9781771622462: Amazon.com: Books

We Exist As Friction

I highly recommend Liz Jackson’s episode of UX Cake, Changing the Disability Design Narrative, to all designers, tech workers, and educators.

Selected quotes:

…how do we insert somebody with a disability studies background into a design space so they can start asking the hard questions and the right questions so that we can get past this — this frame of mind that only thinks of disability in terms of just accessibility?

We exist as friction. The work that I do; it’s wildly painful.

People are creating interventions to get around actually having to talk to us.

And we burst that bubble.

But the thing is, is when you look at empathy, you realize that — that like other sort of charitable approaches, it’s actually caused just as many problems as the solutions that it’s trying to sort of create.

And so, if you boil it down and look at it step-by-step, you know, the first step is, is cultivating empathy. But to a disabled person, it can feel a little less like empathy and a little bit more like designers are coming in, they’re speaking with us, they’re observing us, they’re taking our life hack welcomes right? Our ingenuity, and then they’re going to sell it back to us as inspirational do good, right? Without ever giving us credit.

Source: Changing the Disability Design Narrative – UX Cake Podcast

Yes! We need disability studies folks in every school and company. We need folks who speak and live the social model of disability on our teams.

I’m disabled and neurodivergent with two disabled and neurodivergent kids. “We exist as friction.” I let forth a “hell yeah” when I heard those words. We exist as friction, and we’re constantly educating others on and hacking our way around structural friction, to the betterment of all.

disabled people, we are the original life hackers, right? Our innovative solutions have changed the world, right? Like, we created the Internet, we created the bicycle, we created the iPhone touch screen, we created audio books and curb cuts. And, you know, just item after item. And, you know, I think that it just demonstrates the value of really existing on the margins.

It’s tiresome work. We could use some help from abled and neurotypical allies working with us and alongside us instead of for us. Develop the lens.

…who is capable of developing this lens? I don’t think as a society we’re there yet, right? Like, we don’t always — we’re not so eager to have our bubble burst. Especially with one of the few things that sort of traditionally makes us feel good about ourselves which is what disabled people call inspiration porn, right?

Where the objectification of our body is used to inspire other people, right? Disabled people make everybody else in society feel better about themselves. And I’m taking that away. Right? And that’s not fun.

Develop the lens by changing our framing from deficit ideology to structural ideology.

Design is tested at the edges. Invite friction into our companies, schools, and teams. We’ll all be better off for it.

A Change of Frame: From Deficit Ideology to Structural Ideology

When your kid is DXed as autistic, almost all of the professional advice you get from education and healthcare is steeped in deficit ideology. The unhealthiness, unhelpfulness, and disconnectedness of this worldview leads some to consult autistic adults. Then, you discover neurodiversity and the social model of disability. And then, maybe, intersectionality, design for real life, and equity literate education. And then you find yourself in the healthier framing of structural ideology that is better for your kid and better for the systems and institutions that you’re now trying to improve.

Reframe.

I used to tell my students that ideology never announces itself as ideology. It naturalizes itself like the air we breath. It doesn’t acknowledge that it is a way of looking at the word; it proceeds as if it is the only way of looking at the world. At its most effective, it renders itself unassailable: just the way things are. Not an opinion, not the result of centuries of implicit and explicit messaging, not a means of upholding a power structure. It just is.

Source: the shame is ours

In politics our frames shape our social policies and the institutions we form to carry out policies. To change our frames is to change all of this. Reframing is social change.

When we successfully reframe public discourse, we change the way the public sees the world. We change what counts as common sense. Because language activates frames, new language is required for new frames. Thinking differently requires speaking differently.

Source: The ALL NEW Don’t Think of an Elephant!: Know Your Values and Frame the Debate