I’m Autistic. Here’s what I’d like you to know.

We assembled this as a quick introduction for those interacting and working with our neurodivergent, social model family.

Hello teacher, principal, professor, coach, tutor, therapist, psychiatrist, psychologist, nurse, doctor, coworker,

I’m autistic. You probably believe some wrong things about me. Myths, misconceptions, and misguided awareness campaigns overwhelm and erase the actual lived experiences of autistic people. Here is what I’d like you to know about me, autism, and my needs.

Contents:

Autism, Society, and Me

Press Play for Perspective

For an introduction to autism and a taste of sensory overwhelm, check out these videos:

For a deeper dive, the entirety of the Ask an Autistic series is great:

“Empathy is not an autistic problem, it’s a human problem, it’s a deficit in imagination.” We can’t truly step into another neurotype, but we can seek story and perspective. These videos offer a taste of what it is like to endure the daily gauntlet of neurotypical questioning. To not respond to questions is to be called rude. To not respond will get you publicly color-coded as an orange or red and denied perks that the compliant NT kids get. To not exchange this social styrofoam is to be a problem. Make it stop. Empathize with what it is like to navigate these interactions while dealing with the sensory overwhelm of raucous environments not designed for you.

Advice to Teachers and Parents of Neurodivergent Kids

Our family follows and recommends this advice:

  • 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

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

Rules of Thumb for Inclusive Learning

The following heuristics bring together ideas acquired from neurodiversity, the social model of disability, student-directed learning, passion-based learning, contemporary progressive education, the equity literacy framework, critical pedagogy, critical instruction design, restorative practices, hacker ethos, just culture, and distributed work. Try them when building inclusive spaces and culture.

For more on these rules of thumb, see Rules of Thumb for Human Systems.

Neurodiversity and the Social Model of Disability

Our family often writes on neurodiversity, the social model of disability, and education.

Diversity & Inclusion Recap #2

In this issue,

  • Trans Autistic
  • Medical model flow
  • Embrace the obsession
  • Designing with mental health in mind
  • Minority Media
  • Psychological safety in the age of Trump
  • Disability in the age of Trump
  • Written communication as social equalizer
  • Hidden disability
  • Sensory Regulation, Sensory Diet
  • Biased design
  • Design, Engineering, Skills, and Social Justice
  • Self segregation
  • Empathy Gap and Critical Distance
  • Racial Wealth Gap
  • The Green Book, Erasure of Black History, School to Prison
  • Inspiration Porn
  • Bias at Work
  • Accessibility for Real Life

Trans Autistic

I added this selection from ASAN’s statement on the needs of trans autistic people to Neurodiversity and Gender Non-conformity, Dysphoria and Fluidity .

Misperceptions about what it means to be transgender or about autistic people’s ability to understand their gender or make decisions about their bodies often prompt service providers or family members to stand in the way of transgender autistic people’s attempts to live life with authenticity and dignity. This can include denying transgender autistic people access to transition-related care, subjecting them to “normalization” treatments aimed at suppressing their gender expression, or placing them in guardianship or institutional settings that restrict their decision-making power. While research suggests a large overlap between transgender and autistic communities, trans autistic people often lack access to services and supports that understand and respect all aspects of their identity.

“Too frequently, autistic people are denied basic rights to make decisions about our own bodies and health care, including when it comes to expressing our gender identity,” said Sam Crane, Legal Policy Director for the Autistic Self-Advocacy Network. “Whether we’re transgender or not, autistic people’s gender identities are as real as anyone else’s and should be respected and supported, not dismissed based on baseless stereotypes.”

Source: Autistic Self-Advocacy Network, LGBT Groups Release Statement on Needs of Trans Autistic People | Autistic Self Advocacy Network

I also added this selection.

“A common misconception is the assumption that gender and sexuality are irrelevant to autistic people, or that our sexuality and gender identities are symptoms of our autism,” said Bascom. “These beliefs are not only inaccurate but also profoundly harmful to autistic people and are often used to prevent autistic LGBT folks from accessing LGBT spaces, authentic relationships, and transition-related health care. The reality is that autistic people can have a beautiful diversity of gender identities and sexualities, and we have the same right to self-determination as anybody else.”

Source: How doctors’ offices and queer culture are failing autistic LGBTQ people.

Medical model flow

I’ve had a lot of exposure to the medical model and relate to these grafs.

“Yes, there are some who understand that my medical and mental health needs directly correlate to my gender and sexual identity, but it is not an easy thing to find,” said Rox Herrington, an autistic trans man. “It took me years to find doctors who understood how to relate to me, and there are still many times where I mention that I’m autistic and that I’m transgender that I will be immediately shut down.”

“As a genderqueer, nonbinary trans person, I’ve found that it is possible to find health care providers who are very competent with transgender/gender-nonconforming people, but they are highly unlikely to also be competent in working with autistic people in a non-pathologizing way,” said Lydia X.Z. Brown, chair of the Massachusetts Developmental Disabilities Council. “Likewise, most health care providers I might feel comfortable sharing about being autistic with, and who would be more likely to be more respectful and non-ableist, seem not to have much experience working alongside [transgender/gender-nonconforming] people.”

I am sorry to admit this pervasive ableism has too often informed the way I’ve interacted with autistic patients, LGBTQ or otherwise. Regardless of their gender or sexual identity, autistic and other disabled patients have every right to have those identities acknowledged by their medical providers. Everyone who delivers care to autistic patients should be sure they’re aware of the full person in front of them, not a preconceived notion of what they may or may not understand about themselves.

It was also dismaying to see how many people told me they don’t tell medical providers they are autistic because they fear being patronized or dismissed. Just as LGBTQ people should feel no inhibition from sharing information about themselves with their physicians, people with any kind of disability should be able to walk into a doctor’s office and feel confident they’re going to receive care that is respectful and meets their needs. Clearly the medical community has work to do when it comes to how we care for our autistic patients.

Source: How doctors’ offices and queer culture are failing autistic LGBTQ people.

Embrace the obsession

“Many of our study participants referred to their preferred interests as a ‘lifeline,’” said Kristie Patten Koenig of New York University who led the study published this week in the journal Occupational Therapy in Mental Health.

Overall, 92 percent of study participants said that their interest areas provide a calming effect for them.

What’s more, the vast majority — 86 percent — said they have a job or are in school or other training that’s related to their preferred area.

Of the adults studied, most reported that their interests were not static over time, with 68 percent saying that they have different preferences as adults than they did as youngsters.

While about half of those surveyed said that their parents were supportive of their intense interests, only 10 percent said their teachers were.

“This highlights an important gap in the educational practices of supporting students on the spectrum and the potential for incorporating their preferred interests in the classroom,” Koenig said.

Source: Study: For Those With Autism, Fixations Can Be Beneficial – Disability Scoop

For more on embracing obsession, see Advice to Teachers and Parents of Neurodivergent Kids from my primer on the social model for minds and bodies.

Designing with mental health in mind

With great examples of designing for real life.

For those who work in consumer products, for every company that hopes to serve a billion or more people, there is a challenge and responsibility to build products in a way that serves and supports customers who are the most vulnerable.

Another step we can take in supporting vulnerable customers is allowing them to choose their preferred form of communication.

While the high majority of our customer support is done through in-app chat, we are regularly in touch with our users via email or phone calls. However, for many people speaking on the phone is something that can cause great anxiety, or accessing emails isn’t straightforward, or perhaps they find the Intercom method of chat unusual.

Source: Monzo – Designing a product with mental health issues in mind

My autistic operating system particularly relates to this:

for many people speaking on the phone is something that can cause great anxiety

I’m an autistic parent trying to get my neurodivergent kids through systems that don’t accommodate us. A big barrier is the amount of spoken communication required to navigate hospitals, insurance companies, school systems, recreational sports leagues, and even agencies and institutions that claim to understand autism. If my wife wasn’t a high energy talker, we’d be doomed. “Phones, phones, phones” and “Call if you have a problem” are barriers.

Using the phone appears to be a challenge for many autistic people. All of the non-verbal cues which (we have tried to learn) aid communication — are stripped away. It’s just a voice.

As we use phones less and less in our social lives, I think it becomes even harder to communicate in this way. Every time I have discussed phones with other autistic women, we all describe high levels of anxiety around making and receiving phone calls. Screening calls seems to be common, as does silencing our phones, using caller display, and relying on our answer-phones. If we are expecting an important call, we will wait on tenterhooks, unable to do anything else until that phone call is complete.

Making phone calls is equally problematic. We plan what we need to say and adopt our ‘making a phone call’ persona, reminding ourselves of the conventions of making a phone call. We worry that the call will not be answered by the person we want, and have planned, to speak to. We dread having to explain the purpose of our call to a receptionist or some random person answering the phone. And what if it is an answer-phone? Before we make that call we prepare and rehearse numerous scripts for every conceivable possibility. Unfortunately, when an actual human answers, we are likely to forget the scripts and get in a muddle which sets the tone for the call.

Source: THINKING PERSON’S GUIDE TO AUTISM: Could Do Better: To Professionals Working with Autistic Mothers of Autistic Children

Aversion to phones is often used against us by placing phone requirements in cancellation flow.

Minority Media

This year, we saw more underrepresented groups being hired as writers, making media, and finding their voice. We’ve seen and felt their presence other platforms – black teens made culture on Vine, black women fueled worldwide movements like Black Lives Matter, and #BlackTwitter showed up making memes, vernacular, and blessing us with things like the Mannequin Challenge. That value cannot be understated, but it’s also not enough. As the death of Vine has shown us, simply being an individual creator on a platform isn’t always enough, since you’re at the behest of the powers that be – and those powers are mostly always white.

Despite hiring more minority writers, the power structure in legacy news organizations is still largely controlled by the same types of people. We need more Dodai Stewarts, Lydia Polgreens, and Elaine Welteroths leading editorial teams. We as an industry must invest in black women, Latina women, Muslim women, Asian women, Native American women, members of the LGBT community, and more.

Teen Vogue has shown us the way. Their incisive political coverage has shocked many who believe the magazine to only cover the best hairstyles or nail polish for teen girls, but after Welteroth took over as editor in May, Teen Vogue’s editorial strategy was steered to tackle the heady topics of racism, feminism, activism, and the rest of the -isms, covering these topics better than most traditional news organizations. They’ve demonstrated that when a black woman is in charge and gives younger women the room to write what they believe in, good things happen.

Source: The year of minority media » Nieman Journalism Lab

Psychological safety in the age of Trump

Disability in the age of Trump

For people with disabilities who are also from other marginalized populations, the dangers are heightened. Disabled people of color experience significant health disparities, have high unemployment rates, and are at heightened risk of being victims of violence and police brutality. Students of color with disabilities contend with discriminatory school discipline policies and an education system that reinforces the school-to-prison pipeline. These are only a few of the many examples of why we need an administration that understands the importance of intersectionality.

Moreover, students with disabilities aren’t truly given school choice: No choice exists if private schools can legally refuse to provide appropriate and necessary services and supports, which is often the case. In fact, generally, protections under federal laws such as the IDEA, the Americans with Disabilities Act (ADA), and the Rehabilitation Act, do not extend to students with disabilities who attend private schools. In other words, private schools who do not receive federal funding have absolutely no legal duty to support students with disabilities.

Source: The Right to Learn, Earn, and Live: What Trump’s Cabinet Selections Mean for People With Disabilities – Rewire

Written communication as social equalizer

Where would I be without pervasive written communication? Pursuing the ability to communicate with text is the defining arc of my career.

Written communication is the great social equalizer.

Remember this if you start to fear your Autistic child is spending too much time interacting with others online and not enough time interacting with others face-to-face.  Online communication is a valid accommodation for the social disability that comes with being Autistic.  We need online interaction and this meta-study demonstrates exactly why that is the case.

I couldn’t help wondering, since the study showed the durability of first impressions and the positive response to the written words of Autistics, with all visual and auditory cues removed, could we mitigate childhood bullying in any way by having a class of students meet first online, in text, and form their first impressions of one another in that format before ever meeting face-to-face?

Getting online was revolutionary and may have saved my life.

But when I got online, no one could see (or smell) that about me. All they could see was my words and ideas, and that was what people judged me by. For the first time in my life, I was not found lacking. I made friends of all ages. I was respected and liked. The difference between offline and online communication could not have been more dramatic.

Source: THINKING PERSON’S GUIDE TO AUTISM: Autism and the Burden of Social Reciprocity

I added that quote to the Backchannels section of Communication is Oxygen and to a new Backchannels section of Writing in Education and Plain Text Flow.

Hidden disability

I often bring up the ableist action of harassing/accusing ambulatory wheelchair users (as well as scooter, walker, crutches, and cane users) of “faking” because it’s something that happens ALL the time under the guise of “allyship” that people seem to WANT to remain oblivious to.

A person standing up from a wheelchair or standing without their mobility aid SHOULD NOT be cause for alarm, should not inspire accusations of faking, should not inspire you to say, “it’s a miracle!” in a mocking tone, or to ask me if I should “really be parked here”, or recommendations of weight loss so I won’t “need that chair anymore”, or whispering about how my karma is coming or how I’m going to hell for “playing with a wheelchair”; all comments I’ve received from strangers for just standing in public, getting my chair out of the trunk of my car on my own, or doing something as minimal as riding my chair while being young and smiling.

It’s prejudice; it lacks understanding to how diverse disability is, it uses a singular representation of wheelchair users to judge all wheelchair users. When people are called out on that ableism, those who do it will become defensive and claim to be acting in defense of disabled people because they truly deeply believe in the myth of a “faking disability epidemic”, but hear this: non-apparent disabilities/invisible disablities, etc. are REAL disabilities and you are harassing the very people you are claiming to be advocating for.

Source: Annie Elainey – Standing Up From My Wheelchair in Public – Standing Up From My Wheelchair in Public

I added this to Hidden Disability.

Sensory Regulation, Sensory Diet

Sensory regulation and sensory diet are important to knowing and managing my limits.

To live more comfortably in a world that is not set up with our sensory needs in mind we must learn to brings intentional regulation to our sensory system because out body does not do that for us automatically.

Something about autistic sensory difference that I do not see addressed in the literature is the fact that sensory system needs change over time.

However, over time, implementing the very same sensory regulating strategies doesn’t keep on delivering the same results. This is because the sensory system needs change over time (Endow, 2011).

It is important for autistic adults to be aware of the fact that their sensory needs will likely change over time. When you think of it, it makes sense because all human beings experience this. When you are autistic and have a very sensitive system that does not often regulate automatically you need to be aware of this possibility and watch for the changes.

Source: ‘Autism and A Changing Sensory System” by Judy Endow, MSW

Biased design

A biased, unethical design choice.

Design, Engineering, Skills, and Social Justice

Glad to see social justice as part of Girls Garage pedagogy.

We offer year-round instruction for girls to bring their audacious ideas to life.

After-school, over the summer, or on weekends, girls can work towards their 10-module Fearless Builder Girl certification and earn skill badges along the way. Integrating design, engineering, serious skills and social justice, our programs equip girls with the confidence and tools to build anything they can imagine and to grow alongside one another and their communities.

Source: Programs – Girls Garage

There is no path toward educational justice that contains convenient detours around direct confrontations with injustice. The desperate search for these detours, often in the form of models or frameworks or concepts that were not developed as paths to justice, is the greatest evidence of the collective desire among those who count on injustice to give them an advantage to retain that advantage. 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.

Source: Paul C. Gorski – Grit. Growth mindset. Emotional intelligence….

Self segregation

As a tool maker in the tech world, I’m feeling this one.

Many in the tech world imagined that the Internet would connect people in unprecedented ways, allow for divisions to be bridged and wounds to heal. It was the kumbaya dream. Today, those same dreamers find it quite unsettling to watch as the tools that were designed to bring people together are used by people to magnify divisions and undermine social solidarity. These tools were built in a bubble, and that bubble has burst.

The United States can only function as a healthy democracy if we find a healthy way to diversify our social connections, if we find a way to weave together a strong social fabric that bridges ties across difference.

Source: Why America is Self-Segregating

When we engage in the commons and diversify our connections, we create serendipity.

Empathy Gap and Critical Distance

Although there has been more and more discussion about the lack of diversity in tech, I believe there is still a startling empathy gap as most people do not realize the sheer amount of energy minorities expend trying to belong. The ideal solution is simply to have companies that are diverse, so that no one feels out of place and everyone can thrive.

As a first step, our white, male-dominated industry needs to recognize the real struggle that underrepresented groups face and start driving conversations and actions to create a more empathetic and inclusive workplace. Without such empathy, most companies will continue to fail to achieve true organizational buy-in and won’t be able to take the necessary actions to attract, retain, or get the best work from people who come from underrepresented backgrounds. We can all contribute to finding solutions, but many people in tech don’t bother looking for those solutions because they fail to see the problem in the first place.

Source: Jules Walter on Diversity in Tech: The Unspoken Empathy Gap | Design.blog

Critical distance is necessary not just to critical thinking, but to empathy.

Marginal people are those who are the dominant culture to some extent but are blocked from full participation because of their social status. One need not be a marginal person to be a sociologist, but marginality has often provided the critical distance necessary to inspire a thriving sociological imagination.

Source: Sociology: Understanding a Diverse Society

Racial Wealth Gap

https://twitter.com/rmc031/status/828824135413399553

Research probing the causes of the racial wealth gap has traced its origins to historic injustices, from slavery to segregation to redlining.1 The great expansion of wealth in the years after World War II was fueled by public policies such as the GI Bill, which mostly helped white veterans attend college and purchase homes with guaranteed mortgages, building the foundations of an American middle class that largely excluded people of color. The outcomes of past injustice are carried forward as wealth is handed down across generations and are reinforced by ostensibly “color-blind” practices and policies in effect today. Yet many popular explanations for racial economic inequality overlook these deep roots, asserting that wealth disparities must be solely the result of individual life choices and personal achievements. The misconception that personal responsibility accounts for the racial wealth gap is an obstacle to the policies that could effectively address racial disparities.

Source: The Asset Value of Whiteness: Understanding the Racial Wealth Gap

Get structural.

The Green Book, Erasure of Black History, School to Prison

Our collective lack of knowledge around many black heroes and heroines can also be attributed to the fact that we continue to rely on our nation’s school systems to educate us—the same systems that we are fighting against to make sure that slavery isn’t referred to as “unpaid work” and that our children aren’t stuck in the school-to-prison pipeline. Our collective lack of knowledge around many black heroes and heroines can also be attributed to the fact that we continue to rely on our nation’s school systems to educate us—the same systems that we are fighting against to make sure that slavery isn’t referred to as “unpaid work” and that our children aren’t stuck in the school-to-prison pipeline.

Source: The ‘Green Book’ Was a Travel Guide Just for Black Motorists – NBC News

Inspiration Porn

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 kidisolated 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

I updated Inspiration Porn, Growth Mindset, and Deficit Ideologywith these quotes.

Bias at Work

The bottom line is that patterns of unchecked biased and offensive behavior in the workplace have the potential to erode full employee participation and take a toll on organizational effectiveness.

Given the risks and challenges, how can you draw attention to the bias or offensiveness without putting the other person on the defensive? What are some approaches most likely to limit unintended adverse consequences?

Source: How to Speak Up If You See Bias at Work

Accessibility for Real Life

Here’s what I bring to the table: a valid credit card, 90 seconds of my time, and my right thumb. The rest is up to you

Make your content awesome, so I don’t have to be: I’m nearsighted and I just turned 40, so the other end of my vision is starting to go, too. I could jack up my font, but I literally don’t have time to wade through the settings menu. I’m probably squinting at a site at 4 am, hoping the headings and navigation are crystal clear, and that the first paragraph of text tells me no poop in five days is perfectly normal and I’m doing a great job.

Inclusive design and a great user experience used to be luxuries for me—now I understand how essential they are, especially for folks whose abilities and capacity are different from mine. Users really are relying on you and your team to create sites and apps that make their lives easier.

Source: 8 things parenting taught me about accessibility » Simply Accessible

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

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