The accommodations for natural human variation should be mutual.
@laurenancona
Yet on a programmatic basis, disability policy and other social programs remain enmeshed, even at their best, in accommodation models, where specific proven needs or deficits generate specific individualized responses. What might it look like to shift our framing of the social safety net to a universal model?
I Shouldn’t Have to Dehumanize My Son to Get Him Support | The Nation
This captures an aspect of accommodation models that really frustrate us. They encourage individualized responses to structural design problems. Instead of designing by default for “proven needs” well-known in disability and neurodiversity communities, accommodations models require individual episodes of forced intimacy, repeated over and over and over for the rest of your life. We should treat each episode of forced intimacy as a stress case that puts our designs to the test of real life.
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.
Design for Real Life
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.
Design for Real Life
School IEPs are a treasure trove of stress cases and structural problems currently treated individually. Let’s design for pluralism instead of putting us through a soul-chipping accommodations process that, at best, patches over bad design driven by “artificial economies of scarcity”.
Disability systems rely on artificial economies of scarcity. Programs are underfunded, so caregivers, teachers, social workers, and disabled people themselves are all pushed to project their needs as necessary and virtuous.
I Shouldn’t Have to Dehumanize My Son to Get Him Support
What you can’t know unless you have #disability is how all the paperwork chips away at your soul. Every box you tick, every sentence about your “impairment” and “needs” becomes part of the narrative of your identity…
Gill Loomes-Quinn on Twitter
Bascom tells me that experiences like ours happen because disability service systems are never designed to support people with disabilities but are “about managing access to scarce resources. We start with the assumption that these resources are limited, so you have to prove over and over again that you need them more than anyone else. If we as a society invested more resources in supporting people with disabilities, we could redesign our systems accordingly.”
I Shouldn’t Have to Dehumanize My Son to Get Him Support | The Nation
Accessibility is a collective process! Invest in care, and design for real life. “The accommodations for natural human variation should be mutual.”
The medical model is essentially individualist.
The prevalence of deficit-based thinking has the further consequence of focusing attention directly on the individual and away from social and environmental factors that might in fact play a significant role in shaping autistic lives (Engel, 1977).
Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science
Terzi (2005, p.446), for example, is of the view that the medical model as played out in educational environments results in ‘perspectives emphasising individual limitations’ rather than the ways in which the organisation and design of schools might create those very difficulties in the first instance.
Wood, Rebecca. Inclusive Education for Autistic Children (p. 38). Jessica Kingsley Publishers. Kindle Edition.
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