As our community navigates the deficit and medical models, we live this:
Every descent into the medical system for The label "disabled" means so much to me. It means I have community. It means I have rights. It means I can be proud. It means I can affirm myself... More 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, sometimes abbreviated as ND, means having a mind that functions in ways which diverge significantly from the dominant societal standards of “normal.”NEURODIVERSITY: SOME BASIC TERMS & DEFINITIONS Neurodivergent is quite... More people are always edge cases, and edge cases are stress cases.
People who enter services are frequently society’s most vulnerable-people who have experienced extensive trauma, adversity, abuse, and oppression throughout their lives. At the same time, I struggle with the word “trauma” because it signifies some huge, overt event that needs to pass some arbitrary line of “bad enough” to count. I prefer the terms “stress” and “adversity.” In the book, I speak to the problem of language and how this insinuates differences that are not there, judgments, and assumptions that are untrue. Our brains and bodies don’t know the difference between “trauma” and “adversity”-a stressed fight/flight state is the same regardless of what words you use to describe the external environment. I’m tired of people saying “nothing bad ever happened to me” because they did not experience “trauma.” People suffer, and when they do, it’s for a reason.Psychiatric Retraumatization: A Conversation About Trauma and Madness in Mental Health Services – Mad In America
The logistics of disability and difference in a structurally ableist and inaccessible world poisoned by the politics of resentment 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 Isn't CoddlingPeople often mistake compassion for “being nice,” but it’s not. At A List Apart, the editorial team still says no when a submission isn’t a good fit. At... More, 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 Monotropism is a theory of autism developed by autistic people, initially by Dinah Murray and Wenn Lawson.Monotropic minds tend to have their attention pulled more strongly towards a smaller number of interests at... More and improves outcomes.
The point of compassion isn’t to soften bad news or stressful situations with niceties. It’s to come from a place of kindness and understanding, rather than a place of judgment. It’s to tell the truth in such a way that you’re allowing others to tell their truths, too.Design for Real Life
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.
What Lorde and other black feminists … realized was that the more dehumanized groups a person belongs to, the more their experience forces them to understand about the way society is structured: what and who it takes for granted, the truths about itself it chooses to ignore, who is doing the truly essential work.Letters To My Weird Sisters: On Autism and Feminism
For me this space of radical openness is a margin a profound edge. Locating oneself there is difficult yet necessary. It is not a “safe” place. One is always at risk. One needs a community of resistance.
Living as we did on the edge we developed a particular way of seeing reality. We looked both from the outside in and from the inside out. We focused our attention on the centre as well as on the margin. We understood both. This mode of seeing reminded us of the existence of a whole universe, a main body made up of both margin and centre. Our survival depended on an ongoing public awareness of the separation between margin and centre and an ongoing private acknowledgement that we were a necessary, vital part of that whole. This sense of wholeness, impressed upon our consciousness by the structure of our daily lives, provided us with an oppositional world view a mode of seeing unknown to most of our oppressors, that sustained us, aided us in our struggle to transcend poverty and despair, strengthened our sense of self and our solidarity.Choosing the Margin as a Space of Radical Openness, bell hooks
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.
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
“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 Educators with a structural ideology understand that educational outcome disparities are dominantly the result of structural barriers, the logical if not purposeful outcome of inequitable distributions of opportunity and access... More of poverty and economic justice that teachers become EquityA commitment to action: the process of redistributing access and opportunity to be fair and just.A way of being: the state of being free of bias, discrimination, and identity-predictable outcomes... More 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 EquityA commitment to action: the process of redistributing access and opportunity to be fair and just.A way of being: the state of being free of bias, discrimination, and identity-predictable outcomes... More
Equity literate makers are better makers. We live and make in the context of structural racism, sexism, A system that places value on people's bodies and minds based on societally constructed ideas of normality, intelligence, excellence, desirability, and productivity. These constructed ideas are deeply rooted in anti-Blackness,... More, 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’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.
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 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 EquityA commitment to action: the process of redistributing access and opportunity to be fair and just.A way of being: the state of being free of bias, discrimination, and identity-predictable outcomes... More by helping to keep our privilege from getting in our way. Intersectionality makes our systems more effective and more fair.
- 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.
Everything we do publicly can be made more inclusive and uplifting with intersectionality, and everything we do can become exclusionary and oppressive without it. Intersectionality, and the recognition and confrontation of our privilege, can make us better people with better lives.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.
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.
Design for Real Life
Real life is complicated. It’s full of joy and excitement, sure, but also stress, anxiety, fear, Shame, she points out, is not the same as guilt. Guilt happens in response to an action or inaction. It is linked to an event, not a person. It can... More, 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.
“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”.
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.
Source: 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.
Social Model of Disability
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
Source: The social model of disability
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.
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.
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.
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.
The idea of neurodiversity has inspired the creation of a rapidly growing civil rights movement based on the simple idea that the most astute interpreters of autistic behavior are autistic people themselves rather than their parents or doctors.NeuroTribes: The Legacy of Autism and the Future of Neurodiversity
The key to my happiness occurred when I stopped trying to change my brain, and started changing the context around me.The Dyslexia Empowerment Plan: A Blueprint for Renewing Your Child’s Confidence and Love of Learning
Turns out that, more than anything else, Kristin had one of those square-peg personalities that didn’t quite fit her world’s round- and shrinking- holes. The human brain has evolved over many thousands of years, yet only in the last hundred, a blip on that time line, have we demanded that each and every young one sit still and pay attention for seven hours a day. Kristin couldn’t. But was that really her underlying problem?ADHD Nation: Children, Doctors, Big Pharma, and the Making of an American Epidemic
Autism isn’t an illness. It’s a different way of being human. Children with autism aren’t sick; they are progressing through developmental stages as we all do. To help them, we don’t need to change them or fix them. We need to work to understand them, and then change what we do. In other words, the best way to help a person with autism change for the better is to change ourselves- our attitudes, our behavior, and the types of support we provide.
We’re all human, and these are human behaviors.
That’s the paradigm shift this book will bring: instead of classifying legitimate, functional behavior as a sign of pathology, we’ll examine it as part of a range of strategies to cope, to adapt, to communicate and deal with a world that feels overwhelming and frightening. Some of the most popular autism therapies make it their sole aim to reduce or eliminate behaviors. I’ll show how it’s better to enhance abilities, teach skills, build coping strategies, and offer supports that will help to prevent behavioral patterns of concern and naturally lead to more desirable behavior. It’s not helpful to dismiss what children do as “autistic behavior” or “aberrant behavior” or “noncompliant behavior” (a phrase used by many therapists). Instead of dismissing it, it’s better to ask: What is motivating it? What purpose does it serve? Does it actually help the person, even though it looks different?Uniquely Human: A Different Way of Seeing Autism
But the language of disability is very different to the language of disorder. Disability requires societal support, Compassion Isn't CoddlingPeople often mistake compassion for “being nice,” but it’s not. At A List Apart, the editorial team still says no when a submission isn’t a good fit. At... More 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.
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.
Let’s organize our lives around love and care.
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.
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 Bodymind: A term used to challenge the idea the body and mind are experienced separately (Descartes). Written in various ways, Bodymind or Body-mind, this usage foregrounds the understanding that experiences... More.
We pledge to act and interact in ways that contribute to an open, welcoming, diverse, inclusive, and healthy community.
We steer by these acquired phrases. They are compasses and stars that align us on our mission.
It is time to celebrate our Interdependence acknowledges that our survival is bound up together, that we are interconnected and what you do impacts others. If this pandemic has done nothing else, it has illuminated how... More. 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.
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