Great minds don’t always think alike.
To face the challenges of the future, we’ll need the problem-solving abilities of different types of minds working together.
Instead of connecting neurodivergent and disabled kids with an identity, tribe, and voice, we segregate and marginalize them. We medicalize and assess them. We demand their compliance and rarely ask for consent. We define their identities through the deficit and medical models and then tell them to get some grit and growth mindset. We reduce emancipatory tech to remedial chains.
Let’s embrace instead the voice and choice of self-directed, passion-based learning informed by neurodiversity, the social model of disability, and assistive technology. Create a future of education and work where diverse teams use technology to communicate, collaborate, iterate, and launch to authentic audiences of fellow humans.
End the segregation of special. Fix injustice, not kids. Together, we will iterate our way through massive software-driven change. We will navigate disruption with compassion, finding opportunity and inspiration in the diversity of our shared humanity. We are humans making things for and with other humans, helping each other cope with sentience and senescence on our pale blue dot.
To that end, the quotes and resources below provide a primer on neurodiversity, the social model of disability, and design for real life. The social model, for both minds and bodies, is essential to inclusive design. We are responsible for humanizing flow in the systems we inhabit, and we need the social model to do it.
- Social Model of Disability
- Stimming and Quiet Hands
- Advice to Teachers and Parents of Neurodivergent Kids
- Design for Real Life
- Rules of Thumb for Human Systems
Neurodiversity is the diversity of human brains and minds – the infinite variation in neurocognitive functioning within our species.
The neurodiversity paradigm is a specific perspective on neurodiversity – a perspective or approach that boils down to these fundamental principles:
1.) Neurodiversity is a natural and valuable form of human diversity.
2.) The idea that there is one “normal” or “healthy” type of brain or mind, or one “right” style of neurocognitive functioning, is a culturally constructed fiction, no more valid (and no more conducive to a healthy society or to the overall well-being of humanity) than the idea that there is one “normal” or “right” ethnicity, gender, or culture.
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.
“Great minds don’t always think alike.” We already understand the value of biodiversity in a rainforest. The presence of a wide variety of life forms – each with its own distinctive strengths and attributes – increases the robustness and resilience of any living community as a whole, and its ability to adapt to novel conditions. The same is true of any community of human minds, including workplaces, corporations, classrooms and society as a whole. To face the challenges of the future, we’ll need the problem-solving abilities of different types of minds working together.
The word “neurodiversity” was coined in the 1990s by an Australian sociology grad student named Judy Singer after reading a book about the social model of disability, which proposes that disability is a product of the way society is organised, rather than by limitations imposed by a person’s condition. In a world without wheelchair ramps and accessible buildings, wheelchair users have very few choices about where they can go. But in a world that accommodates wheelchair users, they have many more choices. Neurodiversity extends the social model of disability into the realm of cognitive differences like autism, dyslexia, and ADHD. How can we make the world safer and more welcoming to people with these conditions so they can lead happier, healthier, and more autonomous lives? That’s the question that the neurodiversity movement asks.
Neurodiversity: the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions.
Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment?
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.
It seems that for success in science and art, a dash of autism is essential. For success, the necessary ingredient may be an ability to turn away from the everyday world, from the simply practical, an ability to re-think a subject with originality so as to create in new untrodden ways.
The revenge of the nerds was taking shape as a society in which anyone who had access to a computer and a modem could feel less disabled by the limitations of space and time.
The kids formerly ridiculed as nerds and brainiacs have grown up to become the architects of our future.
If you meet one person with autism, you’ve met one person with autism.
Human cognitive diversity exists for a reason; our differences are the genius – and the conscience – of our species.
Dyslexic children often have better imaginations than non-dyslexics, after all, but nobody labels the “normal” children as having an “imagination disability.”
These children’s brains are organizing themselves differently, and it should go without saying that their developmental arc may therefore be different. When we interfere in the process of this organization, when we stigmatize it and test it and remediate it prematurely -– when we try to teach dyslexics to think like other children by aggressively drilling them in phonics –– Cooper says we are robbing these children of the opportunity to build organically on their many strengths rather than being treated as something broken that needs fixing.
Some simply have a different learning strategy; one that absorbs, considers, consolidates, integrates, and then suddenly blossoms fully formed
If your learning style doesn’t fit this year’s theory, you will be humiliated, remediated, scrutinized, stigmatized, tested, and ultimately diagnosed and labelled as having a mild defect in your brain.
Dyslexia is not a disease, it is an identity. An identity is not something one cures; it is the basis of community and is an element of self you aim to understand and embrace. My hope is that you and your child will learn to own dyslexia, to understand it, and ideally, to celebrate it.
This book— and your mission as a parent— is about moving the model for your child from dyslexia as disease to dyslexia as identity, an identity we can all be proud of.
Most schools and reading programs designed for remediation of dyslexia are based on the idea that dyslexia equals brokenness. Their aim is to transform the child into a person who can read without problems. But I’m here to tell you that’s just wrongheaded. I’ve learned that if you make your primary goal teaching your child to read or spell just like every other child, you’re going to decrease your child’s chances of achieving success. It’s like telling a person in a wheelchair that she needs to put in more time to learn how to walk.
I am introducing these terms to address an underlying bias in our schools: that eye reading is the only form of reading. You can help move the needle on this limited assumption by using the terms eye reading, ear reading, and finger reading yourself and explaining them to your child. We need to celebrate children’s love of ideas and quest for knowledge and give them permission to not like standard books at the same time! When we give kids opportunities to gather information and explore ideas in other ways, they will thrive.
Focusing on eye reading overlooks the real goals of education, which are learning, independent thinking, and mastering the ability to make new connections in the world of ideas.
A central theme in this book is that we must question what we are taught is the “normal” way to do things, and instead integrate multiple ways for our children to access information.
If you are a dyslexic person or the parent of a dyslexic child, I recommend that you allow technology to become your new best friend.
The key to my happiness occurred when I stopped trying to change my brain, and started changing the context around me.
One dyslexic friend of mine described his shame as “slow-drip trauma.” He felt unworthy and “not normal” every day. As an adult, he was treated for post-traumatic stress syndrome that was caused by his experiences in school.
Ninety percent of my injuries happened when I was in school and before I was talking about my dyslexia publicly. Hiding who you are can translate into self-harm. When I talk with my peers in the dyslexia movement, a majority of them had a specific plan for suicide when they were teenagers. I regularly meet dyslexic kids who cut themselves or worse when they were young. I am fine today, but the hiding left scars, figurative and literal, for many of us.
My friend Steve Walker, a very successful dyslexic entrepreneur, tells me all the time that you could not pay him enough money to go back to any type of school setting. He even says that he would sooner kill himself than go back to school. Yet in the same breath he will also say that you could not give him enough money to take away his dyslexia, because it is a part of who he is. Many times when I was in school or taking a standardized test, I rejected an accommodation because I was embarrassed and ashamed: I did not want to stand out, or I was frustrated that it would take too much effort to get permission to have my exam read aloud to me.
The majority of teachers and administrators are well-intentioned and look for ways to help your child. However, they often miss the most important point, which is that the goal is not to fix your child— your child is not broken. The goal is, instead, to play to your child’s strengths, support his weaknesses, and give him access to information.
Dyslexia is a genetic, brain-based characteristic that results in difficulty connecting the sounds of spoken language to written words. It can result in errors in reading or spelling as well as in a number of areas not considered major life activities, such as determining right and left. Individuals who are dyslexic can be highly independent and intelligent. Dyslexia is also characterized by a set of strengths that typically come with this profile in one or more of the following areas: verbal, social, narrative, spatial, kinesthetic, visual, mathematical, or musical skills. Overall, it is characterized by an increased ability to perceive broad patterns and a reduced ability to perceive fine detail in systems.
In this definition, dyslexia is characterized as a “disorder,” as opposed to a characteristic. The word disorder suggests that something is “wrong” or that the person is broken. However, disability can be defined only in a particular context, which is to say if there was no such thing as written text, there would be no disability related to reading.
Often people discuss dyslexia in terms of it having been diagnosed, but that word reinforces the notion that dyslexia is a disease, a scourge, an imperfection, and that someday we can find a cure. As I said in the introduction, there will be no cure because there is no disease! Dyslexia is a characteristic, like being male or female, or from a certain state, or a graduate of a certain university. There’s nothing less than perfect inherent in any of those descriptions, is there? You can start changing this practice in your own house today, replacing the phrase “diagnosed with dyslexia” with “identified with dyslexia.”
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.
Here is what I have learned from my years in the field and from Ros Blackburn and others: There is no such thing as autistic behavior. These are all human behaviors and human responses based on a person’s experience. When I present workshops and seminars about autism, I often tell the audience that I have never seen a person with autism do something that I haven’t seen a so-called normal person do. Of course, many people find this difficult to believe. So I make it a challenge. I ask the listeners— usually parents, teachers, and professionals— to name a behavior that is central to autism, and I predict that I have witnessed it in a typical person. Immediately people in the audience raise their hands.
“How about repeating the same phrase over and over one thousand times?”
Plenty of kids do that when they’re asking for an ice cream cone or how much longer the drive will be.
“Talking to yourself when nobody’s around?”
I do that in my car every day.
“Banging her head on the ground when she’s frustrated?”
My neighbor’s “typical” son did that when he was a toddler.
Rocking, talking to yourself, jumping up and down, flapping your arms? We all do these things. The difference, of course, is that you might not have seen it as persistently or as intensely (or at an older age) in a typical person. And if we do engage in such behavior, we generally make sure we’re not doing so in public.
Ros Blackburn says people stare when she jumps up and down and flaps her arms. They’re simply not accustomed to seeing an adult act with such abandon. She points out that it’s common to see people on TV doing just what she does, after they’ve won the lottery or a game show. “The difference,” she says, “is that I get excited more easily than you do.”
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?
Discourse and education on autism, in the academic and professional realms, has thus far been dominated by what I have termed the pathology paradigm. At the root of the pathology paradigm is the assumption that there is one “right” style of human neurocognitive functioning. Variations in neurocognitive functioning that diverge substantially from socially constructed standards of “normal” – including the variations that constitute autism – are framed within this paradigm as medical pathologies, as deficits, damage, or “disorders.”
In recent years a new paradigm has begun to emerge, which I refer to as the neurodiversity paradigm. The term neurodiversity, coined in the late 1990s, refers to the diversity of human minds – the variations in neurological structure and functioning that manifest within the human species. Within the neurodiversity paradigm, neurodiversity is understood to be a form of human diversity that is subject to social dynamics – including the dynamics of oppression and systemic social power inequalities – similar to those dynamics that commonly occur around other forms of human diversity such as racial diversity or diversity of gender and sexual orientation.
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 it could rightly be argued that the term‘disorder’ is not just descriptive. The term ‘disorder’ implies the natural order has gone awry and that the individual’s underlying cognition and neurobiology is dysfunctional is some way – even if for environ-mental reasons. But when we examine the cognition and biology of autism, arguably what we see is not evidence of dysfunction but rather evidence of difference (Lai, Lombardo, & Baron-Cohen, 2014).
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.
Many in the autism community adopt the neurodiversity framework, coining the term ‘neurotypical’ to describe the majority brain. Steve Silberman’s terriﬁc book Neurotribes is a kind of manifesto for the neurodiversity movement, encouraging us to recog-nise autism as an example of diversity in the set of all possible brains, none of which is ‘normal’ and all of which are simply different. 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. Left-handers are an example of neurodiversity in a majority right-handed world, and left-handers used to be seen as a pathological condition that needed correction. In the same way, the concept of neurodiversity challenges whether people with autism should automatically be ‘treated’ and ‘normalised’.
Neurodiversity as a term is related to the much more familiar concept of biodiversity, and we now recognise the importance of respecting our environment, with the rich diversity of life forms that inhabit it. In many ways, the concept of neurodiversity is just the next step in this more respectful way of thinking about our planet and our communities.
Many feel that the term ‘disability’ is softer, and that the term ‘disorder’ is quite hard-hitting. Moreover, while the concepts of disability and neurodiversity are not incompatible, the concepts of disorder and neurodiversity are incompatible. This is because we all have areas of strength or difﬁculty and some cognitive proﬁles are adaptive in certain environmental niches but manifest as a disability in others. If someone is tone-deaf, that is only a disability in a situation where the person is expected to sing. Expanding on the quote attributed to Einstein, a ﬁsh will appear as having a disability if required to climb a tree. And to expand on the quote attributed to a person with autism, ‘we are fresh water ﬁsh in salt water. Put us in fresh water and we are ﬁne. Put us in salt water and we struggle to survive’.
But the case for not applying the term ‘disorder’ to autism is that, in an autism-friendly environment, the person can function not just well, but sometimes even at a higher level than a typical individual. People have made the case for including other neurodevelopmental conditions and ‘phenotypes’, such as ADHD, dyslexia, dyspraxia, dyscalculia or synaesthesia, within the framework of neurodiversity.
There are several messages from the concept of neurodiversity. First, there is no single way for a brain to be normal, as there are many ways for the brain to be wired up and reach adulthood. Second, we need more ethical, nonstigmatising language and concepts for thinking about people who are different and/or who have disabilities. Third, we need a framework that does not pathologise and focus disproportionately on what the person struggles with, and instead takes a more balanced view, to give equal attention to what the person can do. And ﬁnally, genetic or other kinds of biological variation are intrinsic to the person’s identity, their sense of self and personhood, which seen through a human rights lens, should be given equal respect alongside any other form of diversity, such as gender.
In considering the question of how to deal with the diversity of neurological conditions, we would do well to remember H. G. Wells’s story, where “normal” is a fluid term. Nunez thinks of the blind as abnormal, but so do they of him. That each human being is biologically unique is, in fact, the norm. These biological differences are, in turn, inextricably intertwined with the different ways we have of seeing and being in the world. Eliminating this rich biological and psychological diversity in the ostensible interests of ameliorating or preventing suffering would in the end diminish our humanity. It would make us less visibly like the country of the blind, but more like them in their prejudice. 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.
For more on neurodiversity:
- Presume Competence: A Hippocratic Oath for Education
- Autistic Burnout: The Cost of Coping and Passing
- Autistic Empathy
- The Double Empathy Problem: Developing Empathy and Reciprocity in Neurotypical Adults
- Eye Contact and Neurodiversity
- Navigating Autism Acceptance Month and Autism Myths
- The Gift: LD/ADHD Reframed
- Identity First
- Neurodiversity Library
- Interaction Badges
- Navigating Autism Acceptance Month and Autism Myths
- Hidden Disability
- Ben Foss on Dyslexia and Shame
- Compassion is not coddling
- Neurodiversity and Gender Non-conformity, Dysphoria and Fluidity
- Bathroom Bills, Neurodiversity, and Disability
- Neurodiversity and Cognition Representation
- Harm reduction, addiction, tough love, 12 steps, neurodiversity, and the troubled-teen industry
- Transitioning from invisible to visible disability
- Atypical and Autism Representation
- A collection of links on stimming
- On the autism puzzle piece
- On Autism Speaks
Social Model of Disability
The social model of disability is a reaction to the dominant medical model of disability which in itself is a functional analysis of the body as machine to be fixed in order to conform with normative values. 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
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.
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
“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?
Although human diversity, the social model of disability and inclusion as human rights framework concepts are developing traction, for much of society the “special story” still goes like this:
A child with “special needs” catches the “special bus” to receive “special assistance” in a “special school” from “special education teachers” to prepare them for a “special” future living in a “special home” and working in a “special workshop”.
Does that sound “special” to you?
The word “special” is used to sugar-coat segregation and societal exclusion – and its continued use in our language, education systems, media etc serves to maintain those increasingly antiquated “special” concepts that line the path to a life of exclusion and low expectations.
Further, the “special needs” label sets up the medical “care” model to disability rather than the social inclusion model of disability. It narrows and medicalises society’s response to the person by suggesting that the focus should be on “treating” their “special needs”, rather than on the person’s environment responding to and accommodating the person – including them for the individual that they are.
In other words, the language of “special needs” leads to, and serves to excuse, a “can’t do” attitude as the default position of many general educators – it effectively deprives inclusive education of its necessary oxygen – a conducive “can do” classroom culture.
The label of “special needs” is inconsistent with recognition of disability as part of human diversity. In that social framework, none of us are “special” as we are all equal siblings in the diverse family of humanity.
It’s that last one, special needs, that I really want to take aim at, because I believe that seemingly innocuous phrase does serious damage to disability rights.
Every time someone says “special needs,” they reinforce the false notion that disabled people are asking for “extras” when we require accommodations, modifications, and/or support to access the same things that non-disabled people are able to access, such as education, public spaces, community involvement, and so on.
That’s the first problem, because access is not “special” for disabled people. It’s our right.
The second problem is, the phrase “special needs” flies in the face of the social model of disability. The social model says, the disabled person’s inability to access things is due not to the disabled person’s failings, flaws, or deficits, but on the environment’s failure to provide access to the things. For example, a Blind person is not disabled because they can’t see, they are disabled because the world was set up by seeing people for seeing people and is made of many things that are inaccessible to non-seeing people.
To make a metaphor of it, imagine taking a brand new car and submerging it in a lake. The car is disabled; there’s nothing wrong with the car itself, it still does everything it’s designed to do, but it cannot operate in its current environment. If were in an environment well suited to its needs and purposes, like say a road, it would be able to do all the things a car does.
So, when you say “special needs” instead of disabled, you are saying, this person needs all sorts of special things to help them do what we can do. We, the people who designed the buildings, the curriculum, the programs, the services, so that they are tailored to our needs – we don’t need anything special to access those things. Well of course!
Some people shy away from the word disabled because they feel that it’s stigmatizing. (Some people feel the same way about the word autistic.) But you don’t remove stigma by dancing around it and being coy and hush-hush about it. That actually increases stigma. Disabled is not a slur and never was; it’s a neutral description. I believe that the truth is people are not just uncomfortable with the word, they are uncomfortable with disability itself.
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.
The way disability is viewed in our culture—as a deficit, failure, or something to be “overcome”—sets parents up to never feel good enough.
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.
You don’t need somebody to fix you. You need somebody to fight for you, and with you.
The myth of normal is what’s broken.
Disability industrial complex is all about what people can’t do. We spend most of our time trying to fix what they can’t do. When all we do is fix people the message we give to them is that they are broken.
We have created a system that has you submit yourself, or your child, to patient hood to access the right to learn differently. The right to learn differently should be a universal human right that’s not mediated by a diagnosis.
For more on the social model of disability:
- Presume Competence: A Hippocratic Oath for Education
- Inspiration Porn, Growth Mindset, and Deficit Ideology
- Hidden Disability
- Transitioning from invisible to visible disability
- Identity First
Stimming and Quiet Hands
I’ve yet to meet a student who didn’t instinctively know to pull back and put their hands in their lap at this order. Thanks to applied behavioral analysis, each student learned this phrase in preschool at the latest, hands slapped down and held to a table or at their sides for a count of three until they learned to restrain themselves at the words.
The literal meaning of the words is irrelevant when you’re being abused.
When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy.
They actually teach, in applied behavioral analysis, in special education teacher training, that the most important, the most basic, the most foundational thing is behavioral control. A kid’s education can’t begin until they’re “table ready.”
I need to silence my most reliable way of gathering, processing, and expressing information, I need to put more effort into controlling and deadening and reducing and removing myself second-by-second than you could ever even conceive, I need to have quiet hands, because until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me.
Source: Quiet Hands
I will never understand how people can justify the use of “quiet hands”. If you are unaware of what this phrase means, or of the implications for autistic people, you need to read Quiet Hands by Julia Bascom.
When a parent, sibling, educator, therapist, medical professional, etc justifies the use of quiet hands, it baffles me. Do they understand what stimming is? Do they realize that my hands are the key to helping me see the world? Or do they just see my movements as separate from me, as a source of embarrassment for them? I tend to think it’s the latter, that it’s because stimming draws unwanted attention that people want to quiet my hands in the first place. They don’t understand the point of stimming, or I think (hope) they wouldn’t try and prevent it.
So this is what happens when you “quiet hands” us. It’s the equivalent to duct taping an NT person’s mouth shut or preventing a nonspeaking D/deaf person from signing. You are taking away our natural language. You make interacting with the world that much harder.
I handled the thoughtless compliance better than many of my peers. I could disappear into myself and hide in almost still silence. The tugging of my hair betrayed my perpetual anxiety and my yearning to scratch my scalp. In the head beneath the scalp I wanted to scratch and the hair I wanted to pull, a young mind churned: Scratching is not conforming; I must not break the envelope and compromise table readiness; that will rouse them. Hide in compliance. Don’t talk; don’t move; align your body on the auditor at the front of the room. The safe places are your head, books, and libraries. The books are waiting on the other side of compliance.
I sometimes close my eyes to better parse the speech coming at me. I swim in sensory overwhelm. I must pick a firehose. Eyes front preserves the illusion of compliance, so I’ll stop listening. I’m not interested anyway. The books are so much more. The books are waiting. The written word is where my soul abides. This place in which I layover is just where my body resides – an eyes front, knees front, raise your hand to piss layover that I secretly indict. I tell no one.
Within the constant overwhelm is a pilot flame of anxiety, burning always. Anxiety and overwhelm, the torrid pas de deux that belies the silent, almost still compliance. Their dance is steam and froth, resonance foam on the sensory ocean I swim beneath the almost stillness – still but for the tugging of my hair. Don’t disallow me that, but some of them will. Fidgeting is a threat.
For more on stimming, see this continuously updated collection of links.
Advice to Teachers and Parents of Neurodivergent Kids
- Be patient. Autistic children are just as sensitive to frustration and disappointment in those around them as non-autistic children, and just like other children, if that frustration and disappointment is coming from caregivers, it’s soul-crushing.
- Presume competence. Begin any new learning adventure from a point of aspiration rather than deficit. Children know when you don’t believe in them and it affects their progress. Instead, assume they’re capable; they’ll usually surprise you. If you’re concerned, start small and build toward a goal.
- Meet them at their level. Try to adapt to the issues they’re struggling with, as well as their strengths and special interests. When possible, avoid a one-size-fits all approach to curriculum and activities.
- Treat challenges as opportunities. Each issue — whether it’s related to impulse control, a learning challenge, or a problem behavior — represents an opportunity for growth and accomplishment. Moreover, when you overcome one issue, you’re building infrastructure to overcome others.
- Communicate, communicate, communicate. For many parents, school can be a black box. Send home quick notes about the day’s events. Ask to hear what’s happening at home. Establish communication with people outside the classroom, including at-home therapists, grandparents, babysitters, etc. Encourage parents to come in to observe the classroom. In short, create a continuous feedback loop so all members of the caregiver team are sharing ideas and insights, and reinforcing tactics and strategies.
- Seek inclusion. This one’s a two-way street: not only do autistic children benefit from exposure to their non-autistic peers, those peers will get an invaluable life lesson in acceptance and neurodiversity. The point is to expose our kids to the world, and to expose the world to our kids.
- Embrace the obsession. Look for ways to turn an otherwise obsessive interest into a bridge mechanism, a way to connect with your students. Rather than constantly trying to redirect, find ways to incorporate and generalize interests into classroom activities and lessons.
- Create a calm oasis. Anxiety, sensory overload and focus issues affect many kids (and adults!), but are particularly pronounced in autistic children. By looking for ways to reduce noise, visual clutter and other distracting stimuli, your kids will be less anxious and better able to focus.
- Let them stim! Some parents want help extinguishing their child’s self-stimulatory behaviors, whether it’s hand-flapping, toe-walking, or any number of other “stimmy” things autistic kids do. Most of this concern comes from a fear of social stigma. Self-stimulatory behaviors, however, are soothing, relaxing, and even joy-inducing. They help kids cope during times of stress or uncertainty. You can help your kids by encouraging parents to understand what these behaviors are and how they help.
- Encourage play and creativity. Autistic children benefit from imaginative play and creative exercises just like their non-autistic peers, misconceptions aside. I shudder when I think about the schools who focus only on deficits and trying to “fix” our kids without letting them have the fun they so richly deserve. Imaginative play is a social skill, and the kids love it.
- Instead of intensive speech therapy – we use a wonderful mash-up of communication including AAC, pictures scribbled on notepads, songs, scripts, and lots of patience and time.
- Instead of sticker charts and time outs, or behavior therapy – we give hugs, we listen, solve problems together, and understand and respect that neurodivergent children need time to develop some skills
- Instead of physical therapy – we climb rocks and trees, take risks with our bodies, are carried all day if we are tired, don’t wear shoes, paint and draw, play with lego and stickers, and eat with our fingers.
- Instead of being told to shush, or be still- we stim, and mummies are joyful when they watch us move in beautiful ways.
- Instead of school – we unschool and can follow our interests, dive deep in to passions, move our bodies, and control our environment
No student will have mechanical limitations in access to either information or communication — whether through disability, inability at this moment, or even just discomfort. Learning is our goal, and we make it accessible.
Presume competence means – assume your child is aware and able to understand even though they may not show this to you in a way that you are able to recognize or understand.
To presume competence means to assume your child or the other person does and can understand when they are being spoken of and to.
Presume competence means talk to your child or the other person as you would a same age non-Autistic child or person.
Presumptions of competence means treating the other person with respect and as an equal without pity or infantilization.
It does not mean that we will carry expectations that if not met will cause us to admonish, scold or assume the person is being manipulative or just needs to “try harder”.
To presume competence does not mean we assume there is a “neurotypical” person “trapped” or “imprisoned” under an Autistic “shell”.
Presuming competence is not an act of kindness.
Presuming competence is not something we do because we are a “good” person.
We do not get to pat ourselves on the back because we have presumed competence. If we believe we deserve a pat on the back and/or acknowledgement, then we are not presuming competence, we are more likely being condescending.
“To not presume competence is to assume that some individuals cannot learn, develop, or participate in the world. Presuming competence is nothing less than a Hippocratic oath for educators.”
Never assume that the ability to speak equals intelligence. There are plenty of autistic people who have trouble speaking but who have glorious creative worlds inside them seeking avenues of expression. Never assume that an autistic person who can’t speak isn’t listening closely to every word you say, or isn’t feeling the emotional impact of your words. I’ve interviewed many autistic people who said they could hear and understand everything around them while people called them “idiots” or described them as “out of it” to their faces. Ultimately, presuming competence is the ability to imagine that the person in front of you is just as human as you are, even if they seem to be very impaired. If you understand that the autistic students in your class are just as complex and nuanced and intensely emotional and hopeful as you are, you’ll do everything in your power to help them lead happier and more engaged lives.
No child within the Albemarle County Public Schools should need a label or prescription in order to access the tools of learning or environments they need. Within the constraints of other laws (in particular, copyright) we will offer alternative representations of information, multiple tools, and a variety of instructional strategies to provide access for all learners to acquire lifelong learning competencies and the knowledge and skills specified in curricular standards. We will create classroom cultures that fully embrace differentiation of instruction, student work, and assessment based upon individual learners’ needs and capabilities. We will apply contemporary learning science to create accessible entry points for all students in our learning environments; and which support students in learning how to make technology choices to overcome disabilities and inabilities, and to leverage preferences and capabilities.
Source: Seven Pathways
I just want to do what is best for my child. Can this notion of Neurodiversity help me do that?
Yes, absolutely! The notion of Neurodiversity can allow you to embrace your child for who they are, and it can empower you to look for respectful solutions to everyday problems. It can also help you to raise your child to feel empowered and content in their own skin.
Do you think I am ableist? I thought I was helping my child…
Yes, I think you’re ableist. I think most of us are ableist (even if we are ourselves disabled), and because the social climate is ableist, it takes a lot to question ourselves. They way to be respectful is not about being perfect, but we can question our own ableism so as not to let it interfere with our children and their rights.
That is hard for me to hear. I didn’t think I was ableist and it hurts to be told I am.
That’s fair enough. However, if you want to do what is best for your child you will need to move past that in order to begin to shed this ableism from your everyday reactions and choices.
How does it feel to be autistic?
That is really complex and difficult to answer. I cannot explain that in as much depth as would give you a good knowledge of it, however there are so many autistic writers you can look to for guidance on that. If you are asking me to to describe how I experience life, as compared to how you experience life, this is a huge question.
Is there a quick way to understand all this?
No, not really. The hardest part is challenging yourself and dominant social assumptions. It is a long road but the great thing is that you’re already on it. You’ve started; because you’re questioning yourself.
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.
Communicate context and intent:
- Be intentional
- Be transparent
- Be precise
- When it matters most
People 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 MailChimp, Kiefer Lee’s colleagues are still quick to tell spammers, even the unintentional ones, that they can’t send more email.
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
Compassion is an essential tech skill that needs to be taught as an integral part of tech education.
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. In this talk, we’ll look at real-life examples of everything from onboarding processes to conversational UIs, and see how seemingly small design and content decisions can make or break your users’ experience. You’ll learn:
- Why being laser-focused on “delight” can cause major product failures
- When to communicate your personality—and when being light and funny is actually a risk
- How to build compassion into every step of your process, and strengthen your product as a result
- Excerpt from Design for Real Life
- Compassion is not coddling
- Sara Wachter-Boettcher – Design for Real Life – Amuse UX Conference
- Design for Real Life: ‘There’s no checklist for the human experience’
- Stress cases are “moments that put our design and content choices to the test of real life.”
- Inadvertent Algorithmic Cruelty
- Eric Meyer: Designing for Crisis
- Eric A. Meyer: Design for Real Life | WordPress.tv
- Design for Humanity: A New Perspective on User Experience | Udemy
- A collection of links on designing for real life
Rules of Thumb for Human Systems
Champion agency, transparency, and inclusion. Resist deficit ideology and compliance culture. Humanize flow in the systems we inhabit. The following heuristics bring together ideas from neurodiversity, the social model of disability, student-directed learning, passion-based learning, progressive education, social justice education, hacker ethos, and distributed work. Use them when building systems and culture:
- social model > medical model
- social model > deficit model
- spectrums > binaries
- structural ideology > deficit ideology
- agency > compliance
- compassion > coercion
- acceptance > awareness
- acceptance > accommodation
- rights based > needs based
- intrinsic motivation > extrinsic motivation
- agent > patient
- identity > diagnosis
- collaboration > curriculum
- projects > lectures
- communities > platforms