What I’ve learned in the five years since then is that parenting Edmund boils down to one major issue: Do I want to change my son so he can fit into the world, or do I want to change the world so it accepts my son as he is? I have learned I should strive for the latter.
Had a nice chat this afternoon with Boston Children’s Hospital’s inpatient neuroscience folks on autism, the social model of disability, identity first language, and designing for pluralism. The best hospital onboarding I’ve experienced.
I updated “Design is Tested at the Edges: Intersectionality, The Social Model of Disability, and Design for Real Life” with selections from “Histories of Violence: Neurodiversity and the Policing of the Norm – Los Angeles Review of Books” to further emphasize nuance and context.
Neurodiversity is a movement that celebrates difference while remaining deeply nuanced on questions of (medical) facilitation and the necessity of rethinking the concept of accommodation against narratives of cure. The added emphasis on neurology has been necessary in order to challenge existing norms that form the base-line of existence: the “neuro” in neurodiversity has opened up the conversation about the category of neurotypicality and the largely unspoken criteria that support and reinforce the definition of what it means to be human, to be intelligent, to be of value to society. This has been especially necessary for those folks who continue to be excluded from education, social and economic life, who are regarded as less than human, whose modes of relation continue to be deeply misunderstood, and who are cast as burdens to society.
Nonetheless, I think it’s fair to say that this enhanced perceptual field is an aspect of much autistic experience and something neurotypicals could learn a lot from, not only with regard to perception itself, but also as concerns the complexity of experience.
What is needed are not more categories but more sensitivity to difference and a more acute attunement to qualities of experience.
I updated “Classroom UX: Audit Your Context with the Social Model” with a selection from “PBIS is Broken: How Do We Fix It? – Why Haven’t They Done That Yet?”.
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!
Instead of being labeled “children with special needs” they are labeled “children with special rights.”
“No one knows best the motion of the ocean than the fish that must fight the current to swim upstream.” “By focusing on the parts of the system that are most complex and where the people living it are the most vulnerable we understand the system best.” “When we build things – we must think of the things our life doesn’t necessitate. Because someone’s life does.”
A great read on learning styles and cognitive imperialism. So much of the stuff I read on learning styles is out-of-touch with neurodiversity and social model communities, but this gets it.
I updated “Compassion is not coddling. Design for real life.”, “Design is Tested at the Edges: Intersectionality, The Social Model of Disability, and Design for Real Life”, “Neurodiversity in the SpEd Classroom”, and “Classroom UX: Bring Your Own Comfort, Bring Your Own Device, Design Your Own Context” with a selection from “From Hostility to Community – Teachers Going Gradeless”.
An education that is designed to the edges and takes into account the jagged learning profile of all students can help unlock the potential in every child.
I updated “Bring the backchannel forward. Written communication is the great social equalizer.” with a selection from “Microsoft’s Radical Bet On A New Type Of Design Thinking”.
One day someone will write a history of the Internet, in which that great series of tubes will emerge as one long chain of inventions not just geared to helping people connect in more ways, but rather, to help more and more types of people communicate just as nimbly as anyone else. But for the story here, the most crucial piece in the puzzle is this: Disability is an engine of innovation simply because no matter what their limitations, humans have such a relentless drive to communicate that they’ll invent new ways to do so, in spite of everything.
You could describe this in that old cliche that necessity breeds invention. But a more accurate interpretation is that in empathizing with others, we create things that we might never have created ourselves. We see past the specifics of what we know, to experiences that might actually be universal.
I added a selection from “Black Cyberfeminism: Intersectionality, Institutions and Digital Sociology by Tressie McMillan Cottom :: SSRN” to “Compassion is not coddling. Design for real life.” and “Classroom UX: Bring Your Own Comfort, Bring Your Own Device, Design Your Own Context“.
“Essentially, no one knows best the motion of the ocean than the fish that must fight the current to swim upstream. I study fish that swim upstream.”
Intersectionality and the social model are powerful tools for understanding systems. Use them to design for real life.
Intersectionality’s raison dêtre is to reveal the systems that organize our society. Intersectionality’s brilliance is that its fundamental contribution to how we view the world seems so common-sense once you have heard it: by focusing on the parts of the system that are most complex and where the people living it are the most vulnerable we understand the system best.
Real life is complicated. It’s full of joy and excitement, sure, but also stress, anxiety, fear, shame, and crisis. We might experience harassment or abuse, lose a loved one, become chronically ill, get into an accident, have a financial emergency, or simply be vulnerable for not fitting into society’s expectations.
None of these circumstances is ideal, but all of them are part of life-and, odds are, your site or product has plenty of users in these moments, whether you’ve ever thought about them or not.
Our industry tends to call these edge cases-things that affect an insignificant number of users. But the term itself is telling, as information designer and programmer Evan Hensleigh puts it: “Edge cases define the boundaries of who and what you care about” (http://bkaprt.com/dfrl/00-01/). They demarcate the border between the people you’re willing to help and the ones you’re comfortable marginalizing.
That’s why we’ve chosen to look at these not as edge cases, but as stress cases: the moments that put our design and content choices to the test of real life.
It’s a test we haven’t passed yet. When faced with users in distress or crisis, too many of the experiences we build fall apart in ways large and small.
Instead of treating stress situations as fringe concerns, it’s time we move them to the center of our conversations-to start with our most vulnerable, distracted, and stressed-out users, and then work our way outward. The reasoning is simple: when we make things for people at their worst, they’ll work that much better when people are at their best.
Source: Design for Real Life
The products we create can make someone’s day-or leave them feeling alienated, marginalized, hurt, or angry. It’s all depends on whether we design for real life: for people with complex emotions, stressed-out scenarios, or simply identities that are different from our own.
Technology companies call these people edge cases, because they live at the margins. They are, by definition, the marginalized.