Compassion is not coddling. Design for real life.

Compassion is an essential tech skill that needs to be taught as an integral part of tech education.

Source: Get Ready for the Future – JavaScript Scene – Medium

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

I recommend the book Design for Real Life to anyone making things for and with other humans. That’s pretty much all of us. Educators, for example, are always designing, particularly forms. Learn how to make compassionate forms that avoid inadvertent cruelty and exclusion.

A necessary part of design is compassion, and a necessary part of compassion is recognizing stress cases and the structural realities of marginalized people. To design for inclusion and real life, look to the stress cases and the margins. They “put our design and content choices to the test of 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.

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

Technology companies call these people edge cases, because they live at the margins. They are, by definition, the marginalized.

Source: Design’s Lost Generation – Mike Monteiro – Medium

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.

Source: The Intersectional Presidency – Tressie McMillan Cottom – Medium

“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

“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 LifeEric 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”.

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

Design for Real Life and the pathways principle from The End of Average will make you reconsider what you call an edge case.

Normative thinking— the belief there is one normal pathway— has fooled scientists in many fields.

The fact that there is not a single, normal pathway for any type of human development— biological, mental, moral, or professional— forms the basis of the third principle of individuality, the pathways principle. This principle makes two important affirmations. First, in all aspects of our lives and for any given goal, there are many, equally valid ways to reach the same outcome; and, second, the particular pathway that is optimal for you depends on your own individuality.

The first point is rooted in a powerful concept from the mathematics of complex systems called equifinality. According to equifinality, in any multidimensional system that involves changes over time— like a person interacting with the world— there are always multiple ways to get from point A to point B. The second point is derived from the science of the individual, which tells us that, because of the jaggedness and context principles, individuals vary naturally in the pace of their progress, and the sequences they take to reach an outcome. It is in understanding the why that we discover how to leverage the pathways principle to work for us as individuals and as a society.

Source: Rose, Todd. The End of Average: How We Succeed in a World That Values Sameness (p. 129). HarperCollins. Kindle Edition.

Design for Real Life is informed by and compatible with neurodiversity, the social model of disabilityintersectionality, and structural ideology. I have more on developing compassion for the stress cases of the neurodiversity and disability communities in my primer on the social model for minds and bodies and my “I’m Autistic” piece. Social model understanding is essential to every designer’s and maker’s education and work. It is essential to informed compassion. When we design from a social model mindset, we build pluralism into the world. When we design for stress cases and the margins, we build better things and benefit everyone. Without the social model and intersectionality, we’re just bikeshedding injustice. 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.

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.

Source: From Hostility to Community – Teachers Going Gradeless

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.

Source: Psychiatric Retraumatization: A Conversation About Trauma and Madness in Mental Health Services – Mad In America

See also,

 

Inspiration Porn, Mindset Marketing, and Deficit Ideology

Navigating ableist systems built on the deficit and medical models is a full-time job for my neurodivergent family. We must be caseworkers constantly pushing back against deficit ideology and promoting instead the social model and structural ideology.

There have been many attempts to dress up deficit ideology, to put new clothes on the same old systems. In education, grit and growth mindset are currently popular. These deficit model veneers, like the self-esteem movement veneers before them, ignore the structural problems of school and society and instead blame kids, putting the burden of change on them instead of on our systems and institutions. Broken systems cannot be fixed by telling kids to have a good attitude. We must fix injustice, not kids.

Disabled and neurodivergent folks also face deficit ideology. The deficit and medical models are ableist gauntlets. Like students, we are told to get a good attitude, that we just need the right mindset. Instead of the growth mindset served students, the veneers applied to disability are inspiration porn and the supercrip narrative.

The statement “the only disability in life is a bad attitude” puts the responsibility for our oppression squarely at the feet, prosthetic or otherwise, of people with disabilities. It’s victim blaming. It says that we have complete control of the way disability impacts our lives. To that, I have one thing to say. Get stuffed.

By far the most disabling thing in my life is the physical environment. It dictates what I can and can’t do every day. But if Hamilton is to be believed, I should just be able to smile at an inaccessible entrance to a building long enough and it will magically turn into a ramp. I can make accessible toilets appear where none existed before, simply by radiating a positive attitude. I can simply turn that frown upside down in the face of a flight of stairs with no lift in sight. Problem solved, right?

Source: We’re not here for your inspiration – ABC News (Australian Broadcasting Corporation)

We are all too aware of the risk of being filmed for someone’s feel-good story (or for someone to mock, but that could be another post). We already face enormous pressure to not ask for help – to be the “supercrip” and “overcome” our disabilities – and the risk of being a viral story is yet another reason we might avoid asking for help when we need it.

Source: How the Media and Society Objectify Disabled People | Paginated Thoughts

Inspiration porn makes us feel that everything is going to be OK. That’s possible only if we stop being distracted by pretty stories and have the tough conversations.

Source: inspiration Porn Further Disables the Disabled | Al Jazeera America

Inspiration porn. What’s that?

It’s a portrayal of people with disabilities as one-dimensional saints who only exist to warm the hearts and open the minds of able-bodied people.

Source: Speechless on Twitter: “Not your inspiration porn, thank you very much.”

Growth mindset and inspiration porn are pretty stories. Pretty stories that bikeshed the deficit and medical models, never changing anything, always blaming down. Inspiration porn, the overselling of gratitude, and the marketing of mindsets serve only to make neurotypical and abled majorities feel good about themselves.

Mindset marketing and inspiration porn are gaslighting. They’re an attempt to overwrite another person’s reality. We must develop the critical capacity to see gaslighting and inspiration porn. They kill trust between teachers and students, between institutions and those they serve.

The excerpts below discuss inspiration porn from the point of view of disability self-advocates and the social model. Note the common ground between inspo porn, mindset marketing, and canned social emotional skills programs.

Inspiration porn is a term used to describe society’s tendency to reduce people with disabilities to objects of inspiration. You’ve all seen the memes, “the only disability in life is a bad attitude.” Or a picture of a small child running on prosthetic legs accompanied by the caption “what’s your excuse?” These images make the people viewing them feel great, but often they take images of people with disabilities simply living their daily lives and make them extraordinary. But at what cost?

I’ve been the subject of inspiration porn. One of my earliest “inspiration porn” memories is from my primary school days. There was a prize giving at the end of each year. Without fail every year I would get an award for overcoming obstacles or perseverance. It was never explicitly stated what exactly I was overcoming, but I knew they were referring to my disability.

Everybody around me seemed thrilled. Everybody except me. While everybody around me was feeling inspired by the tenacious little disabled girl with a “can do” attitude, I wanted to run out of the building and hide. The awards emphasized my difference, and all I wanted was to be the same. They seemed to benefit those giving the award more than me.

Source: How to Avoid ‘Inspiration Porn’ When Talking About Disability | The Mighty

When people with disabilities being genuinely included in friendships is an item that makes the news, we as a society assume that isolation, exclusion, and loneliness is not only the norm, but the natural outcome for people with disabilities. Furthermore, praising non-disabled people for merely being with us implies that we are not deserving of friendship, or not worth spending time with in the absence of money, volunteer hours, or “feel good” attention from social media outlets. The fact that someone may just want to be with a disabled person for the sole purpose of eating lunch seems to be too much for the media to handle. Disturbingly, the photo is accompanied by hashtags such as #volunteerism. Volunteerism? It is obvious that our world remains in a terribly backward place if spending time with a person with a disability is considered an act of charity. They should try #ableism, if the writers are seeking greater accuracy.

Just because I have a disability does not mean being with me is community service. I am a person worth getting to know, and anyone who considers eating lunch with me an act of charity to be documented on Reddit is not a friend. Unfortunately, our culture often trains non-disabled children to view those with disabilities exclusively in the context of volunteerism and charity. Thus, inspiration porn like this news story is born.

Inclusion should not be shocking. Friendship should not be newsworthy, and no one should assume that the only company a wheelchair user will have is the result of an act of laudable compassion. One article even suggested that the football players were helping a “less fortunate man”. Not only does it imply that people with disabilities must have a lesser quality of life, it implies that the only friendships we will ever have will exist because someone feels sorry for us.

Source: The Squeaky Wheelchair: I’m Not Your Fodder For A Feel Good Story: People With Disabilities & The Assumption That Friendship Is Charity

We, disabled people, see these types of things spread like wildfire, time and time again:

– A disabled person does something that a non-disabled person does, which often plays into the “supercrip” media model of disability

– A non-disabled person treats a disabled person with kindness.

– A non-disabled person helps a disabled person (whether the disabled person asked for help or not).

The effects of these viral stories are quite damaging, even when one does not go to the most extreme consequences. Any one of us could be the next story by asking for help, or getting help even if we don’t want it. Since the conductor announcements of what train is approaching are hard to hear, a  blind person asks a subway stationmaster to help them get on the right train. An autistic person has a shutdown. Their friend helps them retreat to a quiet location without fanfare at the scene. A wheelchair user faces a curb cut, and they decide to complain to the city after finding another route. But a stranger rushes over anyway and helps get them over the curb cut. Someone could film any one of these situations and unleash the tidal wave of feel-good comments, shares, and news stories.

We are all too aware of the risk of being filmed for someone’s feel-good story (or for someone to mock, but that could be another post). We already face enormous pressure to not ask for help – to be the “supercrip” and “overcome” our disabilities – and the risk of being a viral story is yet another reason we might avoid asking for help when we need it.

Finally, we notice when we get objectified as inspiration porn. We feel objectified. It is toxic. Being objectified hurts our self-image and mental health. It erodes our ability to feel safe and like we can have even some privacy. It hampers our ability to set boundaries around privacy. It makes us feel like we have no control over our life and story. We notice, and it hurts in more ways than one.

Source: How the Media and Society Objectify Disabled People | Paginated Thoughts

Inspiration porn is an image of a person with a disability, often a kid, doing something completely ordinary – like playing, or talking, or running, or drawing a picture, or hitting a tennis ball – carrying a caption like “your excuse is invalid” or “before you quit, try”.

The statement “the only disability in life is a bad attitude” puts the responsibility for our oppression squarely at the feet, prosthetic or otherwise, of people with disabilities. It’s victim blaming. It says that we have complete control of the way disability impacts our lives. To that, I have one thing to say. Get stuffed.

By far the most disabling thing in my life is the physical environment. It dictates what I can and can’t do every day. But if Hamilton is to be believed, I should just be able to smile at an inaccessible entrance to a building long enough and it will magically turn into a ramp. I can make accessible toilets appear where none existed before, simply by radiating a positive attitude. I can simply turn that frown upside down in the face of a flight of stairs with no lift in sight. Problem solved, right?

Inspiration porn shames people with disabilities. It says that if we fail to be happy, to smile and to live lives that make those around us feel good, it’s because we’re not trying hard enough. Our attitude is just not positive enough. It’s our fault. Not to mention what it means for people whose disabilities are not visible, like people with chronic or mental illness, who often battle the assumption that it’s all about attitude. And we’re not allowed to be angry and upset, because then we’d be “bad” disabled people. We wouldn’t be doing our very best to “overcome” our disabilities.

I suppose it doesn’t matter what inspiration porn says to us as people with disabilities. It’s not actually about us. Disability is complex. You can’t sum it up in a cute picture with a heart-warming quote.

So next time you’re tempted to share that picture of an adorable kid with a disability to make your Facebook friends feel good, just take a second to consider why you’re really clicking that button.

Source: We’re not here for your inspiration – ABC News (Australian Broadcasting Corporation)

In other words, inspoporn is a collection of overcomer, supercrip, and saintly helper stories. The common undercurrent to all types of inspiration porn, however, is the disabled person’s role in the story. Instead of being an individual character, fleshed out and made fully human and at least potentially relatable to the reader/viewer, the disabled person (or disabled people, if there’s a group) exists as a prop for the non-disabled person in the story. The disabled person’s existence serves as edification for the non-disabled people around them, or as a moral yardstick to measure whether the non-disabled people (the ones who are relatable as main characters to the presumed non-disabled only audience) are sufficiently good tolerant people who are minimally not shitty. This is not the same as being actively anti-ableist, by any stretch of the imagination.

Ari Ne’eman, Autistic Self Advocacy Network co-founder and president, describes the third category of inspoporn as Very Special Episode syndrome — where a disabled character is newly introduced for one or a few episodes of a long-running series (in a book or film, this could easily be adjusted to a single chapter, single scene, or background plot) to teach the main characters (of course not disabled themselves) a very important lesson about tolerance before going back to the institution or special needs school where they “really belong.”

Source: Autistic Hoya: Disabled people are not your feel-good back-pats.

“Inspiration porn” is any meme, video or feel-good article that sensationalizes people with disabilities. Browse social media long enough and you’ll inevitably find images of disabled children doing ordinary activities, like coloring or running, usually captioned with the now-infamous Scott Hamilton quote, “The only disability in life is a bad attitude.” The disability community rejects depictions like these, because according to activists, their only purpose is to make the non-disabled viewer feel good about themselves. Inspiration porn turns people with disabilities into mere objects, placing their physical differences on display and reassuring the viewer that “If these people can live with just one leg,” for example, “I can do so much more without a disability.”

We’re drawn to inspiration porn like this because it comforts us. The idea that anyone can be suddenly diagnosed with bone cancer or get into a car accident and break their spine is terrifying; it reminds us of our frailty and, ultimately, our mortality.

In other words, inspiration porn paints people with disabilities as nothing more than modern-day Tiny Tims—pitiable people who help us put our own problems into perspective while making us smile with their courageous outlook on life. The problem with this is twofold: It not only assumes that disability automatically equals hardship, a tragedy that must be overcome, but it also incorrectly assumes that disability can actually be overcome with a smile and a little bit of determination.

The reality is that disability is a social experience, not simply a medical impairment or disorder. While a person can be born with a congenital condition, like muscular dystrophy, for example, they aren’t truly disabled until they enter a world filled with stairs instead of elevators, or workplace discrimination that prevents them from getting a job. Civil rights legislation like the Americans With Disabilities Act of 1990 and the United Nations Convention on the Rights of Persons With Disabilities (which every major nation has ratified except for the U.S.) are crucial to the lives of people like Purdy and O’Neill. However charming their smiles are, they could never be enough to overcome the oppression that disabled people face.

Source: “Inspiration porn is not okay”: Disability activists are not impressed with feel-good Super Bowl ads – Salon.com

Many disability advocates have expressed disdain for being viewed as “inspirational” in popular media and reject the premise that this emotion adds any positive value to their status. This often used description associated with able-bodied individuals’ emotions in connection with accomplishments or just daily living of those with disabilities is seen by some in the community as separating, objectifying, condescending and regressive in terms of equality and inclusion.

Ask yourself: Who do you overly praise and overly compliment? You do that to children. The implication is that our accomplishments are somehow heroic and need to be reinforced, that we are not naturally motivated from within, from an organic developmental impulse that we all share.

Excessive compliments, like patting us on the back and saying, ‘Look at how brave you are’ or ‘How wonderful you are able to do this’ are based on a negative feeling about us. The assumption is that we in fact carry a negative feeling about ourselves. It is their negative emotion, their aversion, being masked by the apparently positive sentiment.

By over-complimenting us, one may think they are helping our mental health when in fact they are harming it. It makes me feel infantilized, angry and discounted, but stimulates my darker sense of humor as well. Sometimes veiled irony or biting humor is social strategies for subverting their assumed but incorrect assumptions about me.”

Source: Disability as Inspiration: Can Greater Exposure Overcome this Phenomenon?

At its core, inspiration porn demonstrates the need for a broader engagement with the social model of disability. People typically view disability through the medical model, in which diagnosed conditions present obstacles to be cured or overcome. But according the social model, while many people may have all kinds of medical conditions, people are disabled by the lack of accessibility in our society.

Inspiration porn makes us feel that everything is going to be OK. That’s possible only if we stop being distracted by pretty stories and have the tough conversations.

Source: Inspiration Porn Further Disables the Disabled | Al Jazeera America

When you define things in simple terms, you also imply that those who don’t beat their illness or disability are “losers.” Were they not as tough as the kids wearing the super hero costumes in the video? The ad begins with the line, “Sick doesn’t mean weak.” In the video, the word “defeat” flashes. Does that mean some kids “surrender?” Do we really want to suggest that children have that much control over their medical conditions? And at some point, don’t images of boxing and blowing things up conflict with ideas about health and healing?

In her 2015 book Malignant Metaphor: Confronting Cancer Myths, science writer Alanna Mitchell writes about why the battle metaphor isn’t helpful to cancer patients and their families (she also writes about why it’s not a great analogy for the latest clinical treatments). “A main concern is that when someone dies of cancer,” she writes, “the message that remains is that that person just hasn’t fought hard enough, was not a brave enough soldier against the ultimate foe, did not really want to win.”

Many children, like my son, have congenital disabilities or complex medical problems that can’t be defeated. Did they, or their parents, not try hard enough?

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.

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

ABC’s “Speechless,” a sitcom about a family with a son who has a disability, tackled why it’s often offensive to call people with disabilities “inspirational.” And it’s done so, so well.

“Inspiration porn” is a term used to describe a common tendency in which able-bodied people condescend to those with disabilities by suggesting they are brave or special just for living. Ray DiMeo, a character in “Speechless” who is the younger brother of a teen with cerebral palsy, explained it perfectly in Wednesday night’s episode:

“It’s a portrayal of people with disabilities as one-dimensional saints who only exist to warm the hearts and open the minds of able-bodied people,” he said.

To which his brother, JJ, who has cerebral palsy, hilariously adds: “I blame Tiny Tim.”

While these sorts of simplistic attitudes may seem harmless, if misguided, they can have real consequences in a world where disabilities are stigmatized. Research even shows stigma can lead to damaging health care consequences.

What’s more, these kinds of portrayals render the person who is disabled as a side character only revered for what they provide to others.

Source: ‘Speechless’ Just Schooled Everyone On Disability ‘Inspiration Porn’ | The Huffington Post

Media coverage of disability is often informed by some of our worst ideas about difference. Coverage of disability tends to be pornographic - not in the sense of sexual titillation (mostly), but focused on evoking feelings in the consumer, rather than authentically displaying the lived experience of the subject. In the disability rights community, we tend to critique suchrepresentations as “inspiration porn,” a phrase popularized by the late activist Stella Young.

There are at least three basic types of inspiration porn. In one, a disabled person does something normal - like dance to Lady Gaga - and the viewer feels inspired because the disabled person can do this normal thing. Look at them overcome their disability! the narrative goes. This framework cheapens real accomplishments and rarely considers the socially-constructed obstacles to broad success for people with disabilities.

In the second type, an abled person does some basic act of kindness - such as having lunch with an autistic kid isolated at school, stopping work to feed a disabled customer at a restaurant, or inviting a disabled teen on a date. The abled person is then celebrated for their goodness, with the disabled person turned into an object on which the able person acts. Again, structural issues leading to the need for abled intervention vanish.

In the third type, often distinguished as “tragedy porn,” a horrible situation involving a disabled person is displayed, sometimes with comments about overcoming or courage, with the goal of providing perspective on your own (presumably not as bad) troubles. Perspective can be good, but again, the disabled person’s experiences are being leveraged as a tool to make the viewer feel something.

Cuteness is a way of aestheticizing powerlessness.” Many disabled adults, especially those with Down syndrome and Little People, are treated as perpetually cute children.

Because disability is a part of humanity’s natural diversity, it needs to be part of the important conversations we’re having about inclusivity.

Disability as identity and disability pride may be familiar concepts within the disability rights community, but they’re still pretty radical for the ableist world as a whole.

Source: Don’t Turn My Son’s Lady Gaga Dancing Into Your Inspiration Porn

With these more challenging fitness practices coming into the mainstream, reports of resulting injuries have come to the fore. Paradoxically, or perhaps not, many of these fitness practices are packaged as ways to heal the body and mind, particularly for injured and traumatized veterans. The narratives of adaptive athletes have become vital for the promotion of these fitness practices. The narratives are packaged as “inspirational stories,” but more often compress the story into that of the “supercrip.” The supercrip, as defined by disability studies, is a disabled person who is lauded for overcoming their disability. This construct is meant to combat the stereotype of disabled people as being doomed to inactivity and having no agency. But as Amanda K. Booher observes, the supercrip narrative forces the disabled body to conform to “normalcy” in order to become acceptable:

A person with a disability, then, may only be included in society if that person overcomes her or his disability, disciplines/controls her or his body, conforms to expectations of “normal,” abled bodies, and does not need (or, even worse, demand) any accommodations for her or his “differences.”

Source: Nursing Clio  No Excuses: The 21st-Century Supercrip in Three Snapshots

See also,

Education, Neurodiversity, the Social Model of Disability, and Real Life

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.

Source: Steve Silberman recommends the best books on Autism

Instead of connecting neurodivergent and disabled kids with an identitytribe, 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.

Contents:

Neurodiversity

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.

Source: Neurodiversity: Some Basic Terms & Definitions

“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.

Source: Steve Silberman recommends the best books on Autism

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.

Source: NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

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.

Source: A Thousand Rivers: What The Modern World Has Forgotten About Children And Learning

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.”

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?

Source: Schwarz, Alan (2016-09-06). ADHD Nation: Children, Doctors, Big Pharma, and the Making of an American Epidemic (Kindle Locations 140-143). Scribner. Kindle Edition.

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?

Source: Prizant, Barry M. (2015-08-04). Uniquely Human: A Different Way of Seeing Autism. Simon & Schuster. Kindle Edition.

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.

Source: Autism and the Pathology Paradigm

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.

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

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.

Source: Mental Disorder or Neurodiversity? – The New Atlantis

For more on neurodiversity:

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.

Source: Wikipedia: Social Model of Disability

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

Source: The social model of disability

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

One day someone will write a history of the Internet, in which that great series of tubes will emerge as one long chain of inventions not just geared to helping people connect in more ways, but rather, to help more and more types of people communicate just as nimbly as anyone else. But for the story here, the most crucial piece in the puzzle is this: Disability is an engine of innovation simply because no matter what their limitations, humans have such a relentless drive to communicate that they’ll invent new ways to do so, in spite of everything.

You could describe this in that old cliche that necessity breeds invention. But a more accurate interpretation is that in empathizing with others, we create things that we might never have created ourselves. We see past the specifics of what we know, to experiences that might actually be universal. So it’s all the more puzzling that design, as a discipline, has so often tended to focus on a mythical idea of the average consumer.

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

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

Source: World Health Organization on Disabilities

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.

Source: “He ain’t special, he’s my brother” – Time to ditch the phrase “special needs” – Starting With Julius

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.

Source: #SayTheWord, Not “Special Needs” | The E is for Erin

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

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.

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

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.

Source: Jonathan Mooney: “The Gift: LD/ADHD Reframed” – YouTube

For more on the social model of disability:

Stimming and Quiet Hands

“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 know.

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.

Source: On Stimming and why “quiet hands”ing an Autistic person is wrong

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.

Source: CHAMPS and the Compliance Classroom – Ryan Boren

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.

Source: A parent’s advice to a teacher of autistic kids

  • 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

Source: Respectfully Connected | #HowWeDo Respectful Parenting and Support

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.

Source: The Basics of Open Technology | Edutopia

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.

Source: “Presume Competence” – What Does That Mean Exactly? | Emma’s Hope Book

“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.

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

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.

Source: Respectfully Connected | Neurodiversity Paradigm Parenting FAQs

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

Compassion Isn’t Coddling

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.

Source: Get Ready for the Future – JavaScript Scene – Medium

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

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

See also,

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: