Accommodations: Individualized Responses to Structural Design Problems

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 me. 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.

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”.

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

Invest in care, and design for real life.

Previously,

Just Sayin’

Design for real life.

Design for pluralism.

Solve for the infinity.

Foreground complexity as the baseline.

Multiplicities are an intention: We build the best collaboration, the deepest learning, when we expand the opportunities for complex vision.

Design is tested at the edges.

Compassion is not coddling.

Human cognitive diversity exists for a reason; our differences are the genius – and the conscience – of our species.

To face the challenges of the future, we’ll need the problem-solving abilities of different types of minds working together.

Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general.

Difference is not our deficit; it’s our operating system.

Diversity is strength. Difference is a teacher. Fear difference, you learn nothing.

The right to learn differently should be a universal human right that’s not mediated by diagnosis.

Written communication is the great social equalizer.

To not presume competence is to assume that some individuals cannot learn, develop, or participate in the world. Presuming competence is nothing less than a Hippocratic oath for educators.

Noncompliance is a social skill.

Laziness does not exist.

It’s not about behavior.

If a person’s behavior doesn’t make sense to you, it is because you are missing a part of their context.

Design learning where there is no option for oppression.

There is no path to equity that does not involve a direct confrontation with inequity.

Inequities are primarily power and privilege problems.

You cannot counter structural inequality with good will. You have to structure equality.

We are all accountable to the urgent work of building a more just, more equitable world.

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 make things for people at their worst, they’ll work that much better when people are at their best.

Everything we do publicly can be made more inclusive and uplifting with intersectionality, and everything we do can become exclusionary and oppressive without it.

When we build things – we must think of the things our life doesn’t necessitate. Because someones life does.

A mismatched interaction between a person and their environment is a function of design. Change the environment, not the body.

Flexibility makes a big difference in inclusion.

Putting care—not just care work, but care—at the center of our economy, our politics, is to orient ourselves around our interdependence.

Care is an organizational structure needed to keep our nation running. It’s, by definition, infrastructure.

Care work makes all other work possible.

Fix injustice, not kids.

Free, life-changing, and available to everyone.

Provide freedom to those who deal with a world that’s built to be hostile toward them.

Nothing about us without us.

We exist as friction.

Embracing pluralism is good citizenship. Democracy demands equal accommodation.

Fostering healthy pluralism, which democracy demands, means confronting intolerance.

Default to open.

Do not be the oppressor.

People suffer, and when they do, it’s for a reason.

Person-first Language and Sarcastic Teachers and Behaviorists

I hear administrators, and behavioral professionals mandate person first language but freely mock students in front of peers and teachers.

I am sick of it. Words matter.

This is how a lot of teachers in both general education and special education classrooms “communicate” with their students. Snide remarks abound. Direct answers are not provided to direct questions. Sarcasm from teachers is rampant, but the same behavior is not tolerated from students.

Sarcasm is never okay. When we are sarcastic with students it fits both the CDC definitions for relational and verbal bullying.

We are harming the child in front of their peers and we are intentionally denigrating them.

What is sad is that even the when teachers said no to using sarcasm, they managed to miss the point entirely. They avoid it because they may get in trouble or because famous education researchers like Robert Marzano are emphatic in his appeal to why sarcasm is never appropriate. It strikes me as puzzling that so many people defend using sarcasm in their day to day life as a form of humor, but then immediately turn and say it is never appropriate for a students to be sarcastic back to the teacher. It is a behavior that is a non-negotiable from students.

Source: Students Do Not Deserve Your Sarcasm – Why Haven’t They Done That Yet?

Person-first language is problematic:

“People-first” language is meant to divide, it is meant to demean, it is meant to dehumanize, it is meant to pathologize, and yet, it is meant, as I said before, to make its users feel good. In that way it is ultimately destructive because it covers up the crimes.

Only when people get to choose their own labels will we get anywhere toward building an equitable culture.

If we convert horrid prejudices into pleasant sounding phrases, we diffuse those prejudices as an issue.

Source: Using “Correct Language” And “People First” by Ira David Socol – Bowllan’s Blog

I’m autistic, not a person with autism. Autistic is my identity.

I’m a disabled person, not a person with disabilities. Disabled is my identity.

Identity first language is common among social model self-advocates. When hanging out in social model, neurodiversity, and self-advocacy communities, identity first is a better default than person first. Every autistic and disabled person I know uses identity first language. The words autistic and disabled connect us with an identity and a community. They help us advocate for ourselves.

“Disability’s no longer just a diagnosis; it’s a community.”

There’s a language gap between self-advocates and the institutions that claim to represent us. There’s a gap between parents and their #ActuallyAutistic and disabledkids. There’s a generational gap in the disability movement. This is confusing for those trying to be allies. The articles below offer perspective and advice on identity first and person first language from self-advocates. At the end, I collect tweets from autistic and disabled self-advocates in a Twitter moment. Witness and respect these perspectives.

Source: Identity First – Ryan Boren

This is autistic life in the person-first cultures of education:

We navigate systems stacked against us to get access to what amounts to dog training-that dog trainers know better than to use-and a segregated “special” track through our systems that pathologically pathologizes difference and fails to connect with the communities it helps marginalize.

The specialists that serve this “special” track aren’t so much specialized in the lives and needs of neurodivergent and disabled people (managing sensory overwhelm, avoiding meltdown and burnout, dealing with ableism, connecting with online communities, developing agency and voice through self-advocacy) as they are specialized in deficit and medical models that pathologize difference and identity.

So heartbreakingly many can’t even bring themselves to use our language or educate parents about our existence. After autistic students age out of our care, we erase them again as adults.

Source: Neurodiversity in the Classroom – Ryan Boren

We hear the “abuse them now to prepare them for later abuse” line regularly at school. It is used to justify bad practices not at all in touch with the “real world”.

More than a few teachers have notified me that by being sarcastic – particularly with autistic students – they are preparing the students for sarcastic people in the “real world” and these teachers ardently refuse to “coddle” these autistic kids because they demonstrate difficulty with recognizing or learning social cues.

Source: Students Do Not Deserve Your Sarcasm – Why Haven’t They Done That Yet?

“Coddle” suggests a lot about the people saying it. It suggests they don’t have a structural understanding of our society. It suggests their framing is deficit ideology and meritocracy myths. It suggests they’re out of touch with the workplace and the future of work.

They’re not interested in designing for real life. They’re not allies.

Compassion is not coddling, and sarcasm from teachers and therapists isn’t comedy.

There’s been a lot of talk, of late, about laughter. Laughter as power. Laughter as luxury. Laughter as empathy. Laughter as beauty. Laughter as philosophy. Laughter as complicity. Laughter as division. The current political moment has been in one way a lesson in how easily jokes can be weaponized: Jokes can win elections. Jokes can insist that, despite so much evidence to the contrary, lol nothing matters. Jokes can contribute to the post-truth logic of things. They can lighten and enlighten and complicate and delight; they can also mock and hate and lie and make the world objectively worse for the people living in it-and then, when questioned, respond with the only thing a joke knows how to say, in the end: “I was only kidding.”

Source: Trump Mocks Christine Blasey Ford; The Rally Loves It – The Atlantic

“We can hear the spectacle of cruel laughter throughout the Trump era.”

Source: The Cruelty Is the Point – The Atlantic

Suddenly, even the most powerful people in society are forced to be fluent in the concerns of those with little power, if they want to hold on to the cultural relevance that thrust them into power in the first place. Being a comedian means having to say things that an audience finds funny; if an audience doesn’t find old, hackneyed, abusive jokes funny anymore, then that comedian has to do more work. And what we find is, the comedians with the most privilege resent having to keep working for a living. Wasn’t it good enough that they wrote that joke that some people found somewhat funny, some years ago? Why should they have to learn about current culture just to get paid to do comedy?

Source: The price of relevance is fluency