As our family navigates the medical and deficit models, we live this:
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.
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.
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.
People with disabilities are the original life hackers because our motivation is so high. If we don’t hack we often go without.
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.
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.
Source: 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. The insights of intersectionality, the social model of disability, and design for real life help us design and build for these truths:
“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.
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.
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 my toolbox for developing equity literacy and better understanding human systems are:
- Design for Real Life
- Social Model of Disability
As a late-Dx autistic parent with autistic and ADHD kids, discovering these was a critical part of our journey. With them, we are better self-advocates and allies. I’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.
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.
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.
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.
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.
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.
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.
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
“Disability is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which they live.”
A mismatched interaction between a person and their environment is a function of design. Change the environment, not the body. For people who design and develop technology, every choice we make either raises or lowers these barriers.
Source: Kat Holmes: Who Gets To Play?
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.
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.
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.
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.
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.
3.) The social dynamics that manifest in regard to neurodiversity are similar to the social dynamics that manifest in regard to other forms of human diversity (e.g., diversity of ethnicity, gender, or culture). These dynamics include the dynamics of social power inequalities, and also the dynamics by which diversity, when embraced, acts as a source of creative potential.
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.
The key to my happiness occurred when I stopped trying to change my brain, and started changing the context around me.
Source: Foss, Ben (2013-08-27). The Dyslexia Empowerment Plan: A Blueprint for Renewing Your Child’s Confidence and Love of Learning (Kindle Locations 387-389). Random House Publishing Group. Kindle Edition.
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?
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?
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.
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.
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.