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As our communityWhat I have always been hoping to accomplish is the creation of community.Community is magic. Community is power. Community is resistance.Disability Visibility: First-Person Stories from the Twenty-First Century https://www.amazon.com/Disability-Visibility-First-Person-Stories-Twenty-First-ebook/dp/B082ZQBL98/ https://www.amazon.com/Disability-Visibility-Adapted-Young-Adults-ebook/dp/B08VFT4R9T/... More navigates the deficit modelBriefly, deficit ideology is a worldview that explains and justifies outcome inequalities— standardized test scores or levels of educational attainment, for example—by pointing to supposed deficiencies within disenfranchised individuals and... More, the medical model, and the pathology paradigmWhen it comes to human neurodiversity, the dominant paradigm in the world today is what I refer to as the pathology paradigm. The long-term well-being and empowerment of Autistics and members of... More, we live this:
Every descent into the medical system for disabledThe 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 neurodivergentNeurodivergent, 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 traumaIn expanding our definitions of trauma, we must make sure we see trauma as a structural issue, not just an individual one. Scholars now recognize what people from marginalized communities... More, 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 differencesOur friends and allies at Randimals have a saying, What makes us different, makes all the difference in the world.Randimals We agree. Randimals are made up of two different animals... More 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
- People Suffer, and When They Do, It’s for a Reason
- Profound Edge: A Line Between What Is and Seems
- No One Knows Best the Motion of the Ocean Than the Fish That Must Fight the Current to Swim Upstream
- Design for Real Life
- Social Model of Disability
- Books of the Edges: We Are Fractal
- Get Where You Belong: Community of Resistance
- Let’s organize our lives around love and care.
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 errorThe Fundamental Attribution Error is that we overestimate the power of the person and underestimate the power of the situation.Student Culture and Learning: What’s the Connection? Lee Ross defined FAE... More, and sameness-based notions of fairnessEquityA 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 are exhausting, often impossible. We are perpetual hackers, mappers, and testers of our systems by necessity of survival.
A necessary part of design is compassionCompassion Isn't CoddlingPeople often mistake compassion for “being nice,” but it’s not.The point of compassion isn’t to soften bad news or stressful situations with niceties. It’s to come from a... More, and necessary parts of compassion are acknowledging the structural realities of marginalizedFor 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... More people and rejecting narratives of resentment. “Compassion is not coddling.” Compassion is practical and effective restorative magic. Compassion humanizes flowEntering flow states - or attention tunnels - is a necessary coping strategy for many of us.Fergus Murray People need to feel appreciated and safe, to give themselves to an... 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 truthJustice, equality, fairness, mercy, longsuffering, Work, Passion, knowledge, and above all else, Truth. Those are my primary emotions.Very Grand Emotions: How Autistics and Neurotypicals Experience Emotions Differently » NeuroClastic https://youtu.be/uPRa6G2a48E... More in such a way that you’re allowing others to tell their truths, too.Design for Real Life
Profound EdgeFor 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... More: A Line Between What Is and Seems
Our designs, our societies, and the boundaries of our compassion are tested at the edgesFor 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... More, where the truths told are of bias, inequalityEquityA 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, 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
James Baldwin…deserves flowers everyday, most of all, because he was willing to discuss things that were painful, hard to look at, hard to see, hard to accept.Meshell Ndegeocello
For me this space of radical openness is a marginFor 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... More 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 awarenessAcceptance means training mental health service providers to look at autism and other disabilities as a part of a person's identity, rather than a problem that needs to be fixed. Acceptance... More 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 marginalityFor 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... More 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 powerThe 20th Century political scientist Karl Deutsch said, “Power is the ability not to have to learn.”I quote this statement often, because I think it’s one of the most important... More, 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 purposeSelf-determination Theory (SDT) is... — a model, a macro theory, of human motivation. It’s one of several models of human motivation, but it’s one that has been confirmed over and... More 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 ideologyEducators 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 equity literateEquityA 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 (Gorski 2013), capable of imagining the sorts of solutions that pose a genuine threat to the existence of class inequityEquityA 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 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 equityEquityA 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 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 playThere is nothing more human than play. Humans were designed to learn in play. In fact, nearly all mammals evolved this way.Play's Power At our learning space, we provide learners fresh... More a significant role in sustaining inequity.
The “Poverty of Culture” Principle: InequitiesEquityA 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 are primarily power and privilegeTo not have conversations because they make you uncomfortable is the definition of privilege. Your comfort is not at the center of this discussion.Brené Brown Power can be understood as... More 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, mindsetsThe marketing of mindsets was everywhere this year: “How to Develop Mindsets for Compassion and Caring in Students.” “Building A Tinkering Mindset In Young Students Through Making.” “6 Must-Haves for... More, 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 LiteracyEquityA 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, ableismable·ism /ˈābəˌlizəm/ nounA system of assigning value to people's bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness. These constructed ideas are deeply... More, and childismChildismEmpowering children by transforming norms.Wall, The Concept of Childism, Exploring Childism Across Disciplines, January 22, 2021 Childism empowers children by transforming norms and structures. It is like feminism but related... More. All of us making for and with other people would serve our clients, customers, users, students, coworkers, constituents, and communitiesWhat I have always been hoping to accomplish is the creation of community.Community is magic. Community is power. Community is resistance.Disability Visibility: First-Person Stories from the Twenty-First Century https://www.amazon.com/Disability-Visibility-First-Person-Stories-Twenty-First-ebook/dp/B082ZQBL98/ https://www.amazon.com/Disability-Visibility-Adapted-Young-Adults-ebook/dp/B08VFT4R9T/... More 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.
I think it’s about time we start listening to women.
I think it’s about time we start listening to people of color.
I think it’s about time we start listening to QueerBeing queer means constantly questioning what's considered "normal" and why that norm gets privileged over other ways of being. It means criticizing who sets these norms and recognizing the privilege... More folk.
When they get the radical idea that maybe they can take their own matters into their own hands.
Can you imagine?
This is a song about that.
Finding out if you’re flesh and you’re bone.Sammy Rae & The Friends “Flesh & Bone” (Live at the Sinclair-2/8/20) – YouTube
And we can’t BE a community unless we get past white supremacy,
You cannot get there. The parts we need to survive are scattered All amongst us.Tinu on Twitter
We all find a way to love & live interdependently.
Or we all die.
The whole of humanity.Tinu on Twitter
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 hierarchyThe belief in the existence and relevance of social hierarchies must be suspended.The Beauty of Collaboration at Human Scale: Timeless patterns of human limitations The extent to which a community... More (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.
Source: Black Cyberfeminism: Intersectionality, Institutions and Digital Sociology by Tressie McMillan Cottom :: SSRN
Intersectionality as a theory and practice was quickly adopted by prominent black feminists to describe the need they saw for a more holisticSystems Thinking Is Not Indigenous Holistic ThinkingIndigenous holistic thinking is not systems thinking because many Indigenous peoples and communities do not separate their world or landscapes into “systems” in the... More 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 valuesRemind yourself that shared values, rather than shared beliefs, are what matter when it comes to interacting with others, and that there is no replacement for doing the hard work... More of justice and equalityEquityA 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.
Oluo, Ijeoma. So You Want to Talk About Race (pp. 74-75, 77-79, 81-82). Da Capo Press. Kindle Edition.
- 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.
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.
Source: Kimberlé Crenshaw on What Intersectionality Means Today | Time
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 lifeCompassion Isn't CoddlingPeople often mistake compassion for “being nice,” but it’s not.The point of compassion isn’t to soften bad news or stressful situations with niceties. It’s to come from a... More is complicated. It’s full of joy and excitement, sure, but also stress, anxiety, fear, shameShame, 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 casesCompassion Isn't CoddlingPeople often mistake compassion for “being nice,” but it’s not.The point of compassion isn’t to soften bad news or stressful situations with niceties. It’s to come from a... More define the boundaries of who and what you careThe activities that constitute care are crucial for human life. We defined care in this way: Care is "a species activity that includes everything that we do to maintain, continue,... More 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 casesCompassion Isn't CoddlingPeople often mistake compassion for “being nice,” but it’s not.The point of compassion isn’t to soften bad news or stressful situations with niceties. It’s to come from a... More: 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 lifeCompassion Isn't CoddlingPeople often mistake compassion for “being nice,” but it’s not.The point of compassion isn’t to soften bad news or stressful situations with niceties. It’s to come from a... More: for people with complex emotionsJustice, equality, fairness, mercy, longsuffering, Work, Passion, knowledge, and above all else, Truth. Those are my primary emotions.Very Grand Emotions: How Autistics and Neurotypicals Experience Emotions Differently » NeuroClastic https://youtu.be/uPRa6G2a48E... More, 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 ignoranceIf you could redesign society from scratch, what would it look like?How would you distribute wealth and power?Would you make everyone equal or not? How would you define fairness and... More. 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
The choice to frameWhen we successfully reframe public discourse, we change the way the public sees the world. We change what counts as common sense. Because language activates frames, new language is required... More 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: Wikipedia: Social Model of Disability
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.
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“Participants associated puzzle pieces with imperfection, incompletion, uncertainty, difficulty, the state of being unsolved, and, most poignantly, being missing,” “If an organization’s intention for using puzzle-piece imagery is to evoke... More 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.
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
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, acceptanceAcceptance means training mental health service providers to look at autism and other disabilities as a part of a person's identity, rather than a problem that needs to be fixed. Acceptance... 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 acceptedAcceptance means training mental health service providers to look at autism and other disabilities as a part of a person's identity, rather than a problem that needs to be fixed. Acceptance... More 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”.
I’ve finally got a title for my book of Earthseed verses—Earthseed: The Book of the Living. There are the Tibetan and the Egyptian Books of the Dead. Dad has copies of them. I’ve never heard of anything called a book of the living, but I wouldn’t be surprised to discover that there is something. I don’t care. I’m trying to speak—to write—the truth. I’m trying to be clear. I’m not interested in being fancy, or even original. Clarity and truth will be plenty, if I can only achieve them. If it happens that there are other people outside somewhere preaching my truth, I’ll join them. Otherwise, I’ll adapt where I must, take what opportunities I can find or make, hang on, gather students, and teach.Parable of the Sower (Parable, 1)
Inspired by Butler, we think of the philosophy captured here on our website as “Books of the Edges“. We platform and witness the edges.
I wrote this book with images of and books by sick and disabled ancestors ringing my desk. I wrote this with their support and witness. Often when I got stuck, I would ask them what was needed. I call their names: Baba Ibrahim Farajajé, Audre Lorde, Frida Kahlo, Gloria Anzaldúa, Marsha P. Johnson, June Jordan, Taueret Davis, my great aunty Stasia Piepzna Smolon, Leslie Feinberg, Galvarino, Jerika Bolen, and Laura Hershey.Care Work: Dreaming Disability Justice
Octavia wrote novels with young Black women protagonists meeting aliensI believe all persons with Autism need the opportunity to become friends with other Autistic people. Without this contact we feel alien to this world. We feel lonely. Feeling like... More, 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) emergentEmergence is the way complex systems and patterns arise out of a multiplicity of relatively simple interactions.Emergent Strategy: Shaping Change, Changing Worlds Emergent strategy is a way that all of... More 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
Rather than narrowing into one path forward, Octavia’s leaders were creating more and more possibilities. Not one perfect path forward, but an abundance of futures, of ways to manage resources together, to be brilliant together.Emergent Strategy: Shaping Change, Changing Worlds
We have to embrace our complexity. We are complex. These sayings from our philosophy, from our Books of Edges, point us toward the real.
Design is tested at the edges.
Foreground complexity as the baseline.
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.
Multiplicities are an intention: We build the best collaboration, the deepest learning, when we expand the opportunities for complex vision.
We have to embrace our complexity. We are complex.
When we build things – we must think of the things our life doesn’t necessitate. Because someones life does.
It’s not a problem in the person; it’s not a problem with the difference; it’s a problem in the interaction between a difference and a context built for the myth that we should all be the same.
We need to have universally designed systems designed around the reality of human variance opposed to the myth of human sameness.
Democracy is served by centering and empowering people’s voices.
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.
It is in the dignity of the most vulnerable that the dignity of all mankind is upheld.
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.
Accommodation is fundamentally about not changing the person but changing the environment around the person.
Accessibility is a collective process!
Affordability is a part of accessibility.
The accommodations for natural human variation should be mutual.
Provide freedom to those who deal with a world that’s built to be hostile toward them.
Prioritize the most marginalized, and we’ll all rise together.
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
List of Demands by Saul Williams
Let’s organize our lives around love and care.
We exist for the direct support and mutual aidPut simply, mutual aid is a form of political participation in which people take responsibility for caring for one another and changing political conditions by building relationships, networks of reciprocity,... More 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 bodymindsBodymind: 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 interdependenceInterdependence 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