As our community navigates the deficit model, the medical model, and the pathology paradigm, we live this:

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 in a way that doesn't happen with temporary, one-off injuries.

— Dr Gill Loomes-Quinn (@GillLoomesQuinn) April 9, 2018

Every descent into the medical system for disabled folks, for everyone really but not equally, risks dehumanization. I wrote a story for Pacific Standard about one such case.

How Did We Get Into This Mess?: Story: Ableism in the Hospital

Disabled and neurodivergent people are always edge cases, and edge cases are stress cases.

People Suffer, and When They Do, It’s for a Reason

The logistics of disability and difference in a structurally ableist and inaccessible world poisoned by Tall Poppy Syndrome, the politics of resentment, fundamental attribution error, and sameness-based notions of fairness are exhausting, often impossible. We are perpetual hackers, mappers, and testers of our systems by necessity of survival.

A necessary part of design is compassion, and necessary parts of compassion are acknowledging the structural realities of marginalized people and rejecting narratives of resentment. “Compassion is not coddling.” Compassion is practical and effective restorative magic. Compassion humanizes flow and improves outcomes.

Profound Edge: A Line Between What Is and Seems

Our designs, our societies, and the boundaries of our compassion are tested at the edges, where the truths told are of bias, inequality, injustice, and thoughtlessness.

Though incomplete I was working in these statements to identify marginality as much more than a site of deprivation, in fact I was saying just the opposite: that it is also the site of radical possibility, a space of resistance. It was this marginality that I was naming as a central location for the production of a counter hegemonic discourse that is not just found in words but in habits of being and the way one lives. As such I was not speaking of a marginality one wishes to lose to give up or surrender as part of moving into the centre but rather as a site one stays in, clings to even because it nourishes one’s capacity to resist. It offers to one the possibility of radical perspective from which to see and create, to imagine alternatives, new worlds.

I am waiting for them to stop talking about the “other”, to stop even describing how important it is to be able to speak about difference. It is not just important what we speak about but how and why we speak. Often this speech about the “other” is also a mask, an oppressive talk hiding gaps, absences, that space where our words would be if we were speaking, if there was silence, if we were there. This “we” is that us in the margins, that “we” who inhabit marginal space that is not a site of domination but a place of resistance. Enter that space. Often this speech about the “other” annihilates, erases. No need to hear your voice when I can talk about you better than you can speak about yourself. No need to hear your voice. Only tell me about your pain. I want to know your story. And then I will tell it back to you in a new way. Tell it back to you in such a way that it has become mine, my own. Re-writing you I write myself a new. I am still author, authority. I am still the coloniser, the speaking subject and you are now at the centre of my talk. We greet you as liberators. This “we” is that us in the margins, that “we” who inhabit marginal space that is not a site of domination but a place of resistance. Enter that space. This is an intervention. I am writing to you. I am speaking from a place in the margins where I am different, where I see things differently. I am talking about what I see.

Speaking from margins. Speaking in resistance. I open a book. There are words on the back cover NEVER IN THE SHADOWS AGAIN. A book which suggests the possibility of speaking as liberators. Only who is speaking and who is silent. Only who stands in the shadows — the shadow in a doorway, the space where images of black women are represented voiceless, the space where our words are invoked to serve and support, the space of our absence.

Silenced. We fear those who speak about us who do not speak to us and with us. We know what it is like to be silenced. We know that the forces that silence us because they never want us to speak differ from the forces that say speak, tell me your story. Only do not speak in the voice of resistance. Only speak from that space in the margin that is a sign of deprivation, a wound, an unfulfilled longing. Only speak your pain.

This is an intervention. A message from that space in the margin that is a site of creativity and power, that inclusive space where we recover ourselves, where we move in solidarity to erase the category colonised/coloniser. Marginality as site of resistance. Enter that space. Let us meet there. Enter that space. We greet you as liberators.

I am located in the margin. I make a definite distinction between that marginality which is imposed by oppressive structures and that marginality one chooses as site of resistance as location of radical openness and possibility. This site of resistance is continually formed in that segregated culture of opposition that is our critical response to domination. We come to this space through suffering and pain, through struggle. We know struggle to be that which is difficult, challenging, hard and we know struggle to be that which pleasures, delights, and fulfills desire. We are transformed, individually, collectively, as we make radical creative space which affirms and sustains our subjectivity, which gives us a new location from which to articulate our sense of the world.

Spaces can be real and imagined. Spaces can tell stories and unfold histories. Spaces can be interrupted, appropriated and transformed through artistic and literary practice.

Choosing the Margin as a Space of Radical Openness, bell hooks

Call on the law
I'm fixin' to draw
A line between what is and seems
And call up a brawl

Call 'em up now
'Cause it's about to go pow
I'm standing on the threshold
Of the ups and the downs

No One Knows Best the Motion of the Ocean Than the Fish That Must Fight the Current to Swim Upstream

The insights of intersectionality, the social model of disability, and design for real life help us design and build for these truths and do the “truly essential work”:

“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.” “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.” “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.”

There is no path to inclusive design that does not involve direct confrontation with injustice. “If a direct confrontation of injustice is missing from our strategies or initiatives or movements, that means we are recreating the conditions we’re pretending to want to destroy.” Structural ideology—an ideology shared by intersectionality, the social mode of disability, and design for real life–is necessary to good design.

With this in mind, my purpose is to argue that when it comes to issues surrounding poverty and economic justice the preparation of teachers must be first and foremost an ideological endeavour, focused on adjusting fundamental understandings not only about educational outcome disparities but also about poverty itself. I will argue that it is only through the cultivation of what I call a structural ideology of poverty and economic justice that teachers become equity literate (Gorski 2013), capable of imagining the sorts of solutions that pose a genuine threat to the existence of class inequity in their classrooms and schools.

Poverty and the ideological imperative: a call to unhook from deficit and grit ideology and to strive for structural ideology in teacher education

The Direct Confrontation Principle: There is no path to equity that does not involve a direct confrontation with inequity. There is no path to racial equity that does not involve a direct confrontation with interpersonal, institutional, and structural racism. “Equity” approaches that fail to directly confront inequity play a significant role in sustaining inequity.

The “Poverty of Culture” Principle: Inequities are primarily power and privilege problems, not primarily cultural problems. Equity requires power and privilege solutions, not just cultural solutions. Frameworks that attend to diversity purely in vague cultural terms, like the “culture of poverty,” are no threat to inequity.

The Prioritization Principle: Each policy and practice decision should be examined through the question, “How will this impact the most marginalized members of our community?” Equity is about prioritizing their interests.

The “Fix Injustice, Not Kids” Principle: Educational outcome disparities are not the result of deficiencies in marginalized communities’ cultures, mindsets, or grittiness, but rather of inequities. Equity initiatives focus, not on fixing marginalized people, but on fixing the conditions that marginalize people.

Basic Principles for Equity Literacy

Equity literate makers are better makers. We live and make in the context of structural racism, sexism, ableism, and childism. All of us making for and with other people would serve our clients, customers, users, students, coworkers, constituents, and communities better with some equity literacy.

The big three in our toolbox for developing equity literacy and better understanding human systems are:

As neurodivergent and disabled parents and young people, discovering these was a critical part of our journey. With them, we are better self-advocates and allies. We’ll quote from a selection of favorite sources by way of introduction.

Intersectionality

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.

The Intersectional Presidency – Tressie McMillan Cottom – Medium

In the black feminist tradition, examining the points of various structural processes where they most numerously manifest is a way to isolate the form and function of those processes in ways that can be obscured when we study them up the privilege hierarchy (Hill Collins 2000). 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.

Millions of people use social media to navigate identities too complex for single analytical frames like race, class, gender and sexuality to fully capture. We are messy and complicated and we seem to want our digital tools to reflect that. But, intersectionality was never intended to only describe lived experiences. Intersectionality was to be an account of power as much as it was an account of identities (Crenshaw 1991). Here, the potential of intersectionality to understand the reproduction of unequal power relations have not yet been fully realized.

In brief, intersectionality is one of those rare social theories to combine precision of theoretical mechanisms with broadness of method (Lykke 2011). That combination has served intersectionality’s diffusion through social sciences and humanities quite well.

Source: Black Cyberfeminism: Intersectionality, Institutions and Digital Sociology by Tressie McMillan Cottom :: SSRN

Intersectionality, the belief that our social justice movements must consider all of the intersections of identity, privilege, and oppression that people face in order to be just and effective, is the number one requirement of all of the work that I do. When I first learned about intersectionality in college, I honestly had no idea what a huge part of my life it would later become. What was at first an interesting if not abstract theory I wrote about for college papers became a matter of my political, social, spiritual, and yes, even physical survival. Because I am not capable of cutting myself to pieces. I’m not capable of cutting away my blackness in order to support feminism that views the needs of women of color as divisive inconveniences. I’m not capable of cutting away womanhood in order to stand by black men who prey on black women. I’m a black woman, each and every minute of every day—and I need you to march for me, too.

The idea of intersectionality provides a more inclusive alternative to the status quo. Coined by the brilliant race theorist and civil rights activist Kimberlé Crenshaw in 1989, the term “intersectionality” was born from Crenshaw’s work to shed light on the ways in which experiences in both race and gender intertwine to uniquely impact the lives of black women and women of color. Crenshaw referred to those intersections of race and gender as intersectionality and stressed the need to consider intersectionality in our social justice movements.

Intersectionality as a theory and practice was quickly adopted by prominent black feminists to describe the need they saw for a more holistic view of race and gender. From there intersectionality spread to a large section of feminist scholarship and activism and was expanded to include class, ability, and sexuality as well.

Intersectionality, and the necessity of considering intersectionality, applies to more than just our social justice efforts. Our government, education system, economic system, and social systems all should consider intersectionality if they have any hope of effectively serving the public.

Intersectionality helps ensure that fewer people are left behind and that our efforts to do better for some do not make things far worse for others. Intersectionality helps us stay true to our values of justice and equality by helping to keep our privilege from getting in our way. Intersectionality makes our systems more effective and more fair.

So if intersectionality makes all of our social justice efforts so much better, why isn’t it a more prominent part of our social justice movements? I believe there are many reasons that may be why social justice movements have been slow to adopt intersectional practices:

• Intersectionality slows things down.
• Intersectionality brings people face-to-face with their privilege.
• Intersectionality decentralizes people who are used to being the primary focus of the movements they are a part of.
• Intersectionality forces people to interact with, listen to, and consider people they don’t usually interact with, listen to, or consider.

It’s not enough for you to personally believe in intersectionality. We need to start demanding intersectionality of all those who seek to join us in our social justice movements.

Oluo, Ijeoma. So You Want to Talk About Race (pp. 74-75, 77-79, 81-82). Da Capo Press. Kindle Edition.

It’s basically a lens, a prism, for seeing the way in which various forms of inequality often operate together and exacerbate each other. We tend to talk about race inequality as separate from inequality based on gender, class, sexuality or immigrant status. What’s often missing is how some people are subject to all of these, and the experience is not just the sum of its parts.

Intersectionality is simply about how certain aspects of who you are will increase your access to the good things or your exposure to the bad things in life. Like many other social-justice ideas, it stands because it resonates with people’s lives, but because it resonates with people’s lives, it’s under attack. There’s nothing new about defenders of the status quo criticizing those who are demanding that injustices be addressed. It’s all a crisis over a sense that things might actually have to change for equality to be real.

Source: Kimberlé Crenshaw on What Intersectionality Means Today | Time

The term intersectionality is used more broadly today to describe the cumulative effect within one’s lived experience of being in the world with two or more socially constructed identities; and the world’s perception, storying, and interaction with them.

The crux of intersectionality as a philosophy is that it does not allow for socially constructed identities to occur discreetly in the sociopolitical and sociocultural sphere. When someone like me walks into the room, I don’t have the opportunity to negotiate with others which of my identities they intend to hyperfocus on or criticize. I am a package deal. We all are. This is what I feel is so important when advocating for affirmation of intersectional autism. Just as we seek to discuss misogynoir, we need to bring in the complexity of these sorts of social dynamics into the autistic experience. Intersectionality can serve as a silencer of autism if the other seeks to home in on some other stereotype or archetype they find more threatening or — said with disgust — fascinating.

Autism doesn’t occur in a vacuum, and neither do any aspects of our intersectionality. They all happen at once, in the moment, and influence our being in the world, and how the world is with us at all times.

Intersectionality is not only arguing for factualizing these marginalized identities as inextricably intertwined, but also acknowledging that their accumulative interactions are absolutely inseparable.

It is unjust to only think of intersectionality as a crossroads of one dependent and independent variable. Instead, we must grow to see intersectional disability as a radial: multiple streams of energy coalescing at one central point of consciousness and lived experience.

Black Autistics Exist: An Argument for Intersectional Disability Justice | South Seattle Emerald

Design for Real Life

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.

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.

Sara Wachter-Boettcher – Design for Real Life (video)

“Edge case” is, to be frank, a phrase that should be banned from all developer conversations (and then tattooed onto the forehead of anyone who continues to use it).

When we say “Edge Case” we mean “Stress Case”. In their book, Design for Real Life, Eric Meyer & Sara Wachter-Boettcher point out that what we glibly call an “edge case” is normally an enormously stressful event for a user.

It often accompanies high emotions, stress, physical problems, financial problems, etc. When we discount and dismiss the “edge case”, we’re actually saying “I don’t care about that particular user’s stressful situation”.

Dear Developer, The Web Isn’t About You | sonniesedge.co.uk

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

Imagine the frustration of people who use things designed by people who don’t take their basic needs into consideration. I think it is dehumanizing.

When I sit down to design things I try to put on the veil of ignorance. I imagine a world where I am not who I am right now. And I think about all the things that could possibly frustrate me. Then I think some more.

I try to design for that reality. I don’t design for myself and my perfect eyesight, my retina screens, and my fast internet connection.

The Veil of Ignorance

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.

From Hostility to Community – Teachers Going Gradeless

Social Model of Disability

Through the lens of the neurodiversity paradigm, the pathology paradigm’s medicalized framing of autism and various other constellations of neurological, cognitive, and behavioral characteristics as “disorders” or “conditions” can be seen for what it is: a social construction rooted in cultural norms and social power inequalities, rather than a “scientifically objective” description of reality.

The choice to frame the minds, bodies, and lives of autistic people (or any other neurological minority group) in terms of pathology does not represent an inevitable and objective scientific conclusion, but is merely a cultural value judgment.

Autism and the Pathology Paradigm

The social model of disability identifies systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) that mean society is the main contributory factor in disabling people. While physical, sensory, intellectual, or psychological variations may cause individual functional limitation or impairments, these do not have to lead to disability unless society fails to take account of and include people regardless of their individual differences.

Source: Wikipedia: Social Model of Disability

The social model of disability says that disability is caused by the way society is organised, rather than by a person’s impairment or difference. It looks at ways of removing barriers that restrict life choices for disabled people. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives.

Source: The social model of disability

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.

Source: Histories of Violence: Neurodiversity and the Policing of the Norm – Los Angeles Review of Books

They didn’t actually speak to his own limitations. They spoke instead to the thoughtlessness all around him. As he began to see it, disability wasn’t a limitation of his, but rather a mismatch between his own abilities and the world around him. Disability was a design problem.

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. So it’s all the more puzzling that design, as a discipline, has so often tended to focus on a mythical idea of the average consumer.

Source: Microsoft’s Radical Bet On A New Type Of Design Thinking: By studying underserved communities, the tech giant hopes to improve the user experience for everyone.

Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.

Source: World Health Organization on Disabilities

The history of autism makes clear that the notion that there is one best way to learn, one best way to experience the world, and one best way to be human, is bunk.

Think about it: why would the community of human minds be less diverse than, say, a rainforest? But it isn’t. We’re part of the natural world, and nature thrives by experimenting, by fostering the development of many different types of individuals. In a rainforest, this wild riot of variety and difference makes communities of plants and animals more resilient in the face of changing conditions. As we face the challenges of the 21st Century – which include a rapidly changing global climate! – we will need many different types of minds working together.

Inclusion sends a crucial message to all students: If you’re born disabled or become disabled in your lifetime, society will build a place for you.

Source: A Q&A about autism with Steve Silberman, author of NeuroTribes

When your child has a disability, you start out trying to “fix it” through intensive therapy. Over time, you push back. You learn that “fighting” is not a good model for living. Instead of making the child change to fit the world, you want the world to change to fit your child-to accept your child as a full human being.

Source: Illness Isn’t a Battle · thewalrus.ca

But the language of disability is very different to the language of disorder. Disability requires societal support, acceptance of difference and diversity, and societal ‘reasonable adjustment’, while disorder is usually taken to require cure or treatment. These are very different frameworks.

The notion of neurodiversity is highly compatible with the civil rights plea for minorities to be accepted with respect and dignity, and not be pathologised.

Source: Editorial Perspective: Neurodiversity – a revolutionary concept for autism and psychiatry

Rather than working to create another set of public labels, the real value of the neurodiversity movement may be in helping us to recognize that we each face challenges and opportunities – and that a decent society is one in which we are each able to strive to make the best of what we are given.

Source: Mental Disorder or Neurodiversity? – The New Atlantis

Books of the Edges: We Are Fractal

The disabled protagonist of Octavia Butler’s “Parable of the Sower” riffs on the Egyptian and Tibetan Books of the Dead in naming her philosophy “Earthseed: The Book of the Living”.

Inspired by Butler, we think of the philosophy captured here on our website as “Books of the Edges“. We platform and witness the edges.

Octavia wrote novels with young Black women protagonists meeting aliens, surviving apocalypse, evolving into vampires, becoming telepathic networks, time traveling to reckon with slave-owning ancestors. Woven throughout her work are two things: 1) a coherent visionary exploration of humanity and 2) emergent strategies for being better humans.

Emergent Strategy: Shaping Change, Changing Worlds

We are the edges. We are emergent. We are fractal. We describe an infinite perimeter.

The Koch fractal has an infinite perimeter, but a finite area. In the 1990s, a radio astronomer named Nathan Cohen used the fractal antenna to rethink wireless communications.

Fractal antennas are different. As the fractal repeats itself more and more, the fractal antenna can pick up more and more signals, not just one. And because the perimeter of the Koch snowflake grows way faster than its area, the fractal antenna only takes up a quarter of the usual space.

What Is A Fractal (and what are they good for)? – YouTube

We have to embrace our complexity. We are complex. These sayings from our philosophy, from our Books of Edges, point us toward the real.

Get Where You Belong: Community of Resistance

I got another plan
One that requires me to stand
On the stage or in the street
Don't need no microphone or beat

And when you hear this song
If you ain't dead then sing along
Bang and strum to these here drums
'Til you get where you belong

I got a list of demands
Written on the palm of my hands
I ball my fist and you're gonna know where I stand
We're living hand to mouth
You wanna be somebody?
See somebody?
Try and free somebody
Got a list of demands
Written on the palm of my hands
I ball my fist and you're gonna know where I stand
We're living hand to mouth
Hand to mouth

Let’s organize our lives around love and care.

Mission

We exist for the direct support and mutual aid of neurodivergent and disabled people.

We serve our loved people so we can keep on living through the onslaught.

Creed

I center the marginalized and the different. I center edge cases, because edge cases are stress cases and design is tested at the edges. I center neurodivergent and disabled experience in service to all bodyminds.

Covenant

We pledge to act and interact in ways that contribute to an open, welcoming, diverse, inclusive, and healthy community.

Philosophy

We steer by these acquired phrases. They are compasses and stars that align us on our mission.

Interdependence

It is time to celebrate our interdependence. Interdependence acknowledges that our survival is bound up together, that we are interconnected and what you do impacts others. Interdependence is the only way out of most of the most pressing issues we face today.

Edges

Our designs, our societies, and the boundaries of our compassion are tested at the edges, where the truths told are of bias, inequality, injustice, and thoughtlessness.

Let's organize our lives around love and care
Let's write each other letters and call it prayer
Let's congregate in the place that isn't anywhere
At the temple of broken dreams