In this issue:
- Autistic empathy and the mind-blindness of everyday people
- Accessible consumerism and #FoodieAbleism
- Decolonize science
- Disability and in-class testing
- #OwnVoices #CripLit
- Disability journalism
- Toxic autism awareness
- Autism Awareness Month
- Autism puzzle piece
- Let them stim
- Corporate D&I
- Guys and bots
- Trans women “male privilege”
- Autism discovery
- Autism representation
- AP stylebook on gender-neutral pronouns
- Ableism, unintentional inaccessibility, rights-based supports, universal design
- Newsroom diversity
- Disability and dress codes
- Autism mom
- Toxic Masculinity, Predatory Men, and Male Paralysis
- Ableist gates
- Ableist attendance policies
- Event accessibility information
- Analyzing inspiration porn
- Prove your disability
- #ThePricePWDPay, #CripTax, and #AcademicAbleism
- Trans Broken Arm Syndrome
- Blaming autism
- Race and racism in the Middle Ages
- Autism and Moonlight
- Neuroscience and self-esteem
- Ableist kink and relationship anarchy
- Disability shouldn’t define you
- Tech spreads hate
- Inclusive work culture
- Majorities and edge cases
- Designing for color blindness
- The Mask You Live In – an exploration of American Masculinity
- Acute and chronic
- Meritocracy myth
- Transgender census
- Online safety guides
- Resisting exclusion
- Sensory overload
- End the awkward
- Wheelchair flow in NYC
- Burnt Out: Experiences of Women on the Autism Spectrum
- Spoons, poverty, and disability
- #Chronicloaf #FilmDis
- Racism + capitalism + ableism + education + the violence of the security state
- Social/medical model misery calculator
- Data bias
- Presentation accessibility and comic sans
Autistic empathy and the mind-blindness of everyday people
What I saw in these students instead was hypersensitivity – painful hypersensitivity that caused them to be persistently confused and disoriented about their surroundings and the people around them. It wasn’t that they didn’t care or weren’t empathic; not at all. It was that life was too loud and too intense, full of static and confusion (this idea would soon be called the Intense World theory of autism, see Markram, Rinaldi, & Markram, 2007).
My students were incredibly sensitive to everything around them: sounds (especially very quiet sounds that other people can ignore), colors and patterns, vibrations, scents, the wind, movement (their own and that of the people around them), the feeling of their clothing, the sound of their own hair and their breathing, food, touch, animals, social space, social behavior, electronics, numbers, the movement of traffic, the movement of trees and birds, ideas, music, juxtapositions between voice and body movements, the bizarre, emotion-masking behaviors of “regular” people (oh man, how I empathize)… and many of these students were struggling to stand upright in turbulent and unmanageable currents of incoming stimuli that could not be managed or organized.
These autistic students were overwhelmingly and intensely hyper-empathic – not merely in relation to emotions and social cues, but to nearly every aspect of their sensory environments. Their social issues arose not from a lack of empathy, but from an overpowering surplus of it. I knew what that was like.
I had not landed in a world of aliens; I had dropped right into a community of fellow hyper-empaths who became my friends.
Accessible consumerism and #FoodieAbleism
I need every restaurant and gas station in America to have straws, preferably plastic and bendy. My son, a 10-year-old boy with Down syndrome, has never quite mastered that complex series of motions to drink consistently from the lip of the cup. What he can do, though, is curl his tongue around a straw and create appropriate suction to drink, which was quite the triumph when he first learned it. A whole world of easy hydration opened to us. My family is not alone. Straws are a wildly successful example of assistive technology for millions of people with diverse abilities, all of whom are best served by ubiquitous straws. If Grenier gets people to stop sucking, what about my son?
There’s a deep tension between environmental consumerism and accessible consumerism. Many disabled people have come to rely on prepackaged foods, single-serving products, plastic cups, and yes, straws. On the other hand, there are those in the environmental movement who use shame to push people toward better individual decisions for the environment. Last year, a Twitter user named Nathalie Gordon posted a picture of plastic wrapped pre-peeled oranges, taunting: “If only nature would find a way to cover these oranges so we didn’t need to waste so much plastic on them.” It rapidly went viral and today has over 100,000 retweets and likes.
But for many disabled people, these pre-peeled oranges were wonderful.
Yes your work has a political program: white supremacy. And in order to work towards one that respects & works with the everyone’s humanity in mind you must work to become a historically competent scientist. Its time for us to examine the values and political relations in our lives and around us and envision better ones that aren’t based on colonial ideas about gender, race, sexuality, age, ability, etc..
Disability and in-class testing
I’ve been inching away from the blue book for years, but it’s time to go cold turkey and match my praxis to my principles. Whatever pedagogical gains the in-class test might bring – and I’ll argue they are few and increasingly less relevant – I can no longer justify forcing people with disabilities to disclose their conditions in order to receive basic test-related accommodations.
Not only do students have to disclose disability to their professors —who are no more immune to ableism than to any other sort of bias — but the most common form of accommodation extends the disclosure to classmates. Many students with invisible disabilities (such as anxiety disorders or ADHD) require quiet rooms and extra time to work on a test. I’m thrilled to provide both. On the other hand, when the whole class gathers to take an exam, with one student conspicuously absent, everyone notices.
Use it for whatever marginalized/diverse identity you want (I personally like the WNDB definition) and for whatever genre, category, or form of art you want. As long as the protagonist and the author share a marginalized identity.
Research shows journalists routinely fail to interview disabled people; the humanity of victims is erased from the discourse about such cases; and news outlets often imply that murders of disabled people by caregivers are “justified” or “mercy killings.”
We found it when we saw that in 2015, not a single journalist who reported on one of these stories reached out to a disabled person, let alone the professional experts within the disability rights community. Journalists don’t talk to disabled people.
In the disability rights community, we tend to pass around the worst of the articles. And the worst of the articles are really bad. But I was quite interested in the places where it was clear journalists went into reporting on a murder and were trying to do it in a neutral kind of way, and they still didn’t follow the best practices of “Journalism 101.” Being thoughtful about where you get your reaction quotes: If you get a highly prejudicial quote from one side, try to balance it out on the other side. If you hear a defense attorney put forth a theory on why a crime happened or why a crime didn’t happen, remember that they’re a defense attorney and be really thoughtful about how you use that quote. Really kind of basic stuff. Not in the worst of the cases, not in the worst of the articles, not in the cases where the journalist affirmed a “mercy killing” narrative, which is where I see the really awful examples, but in really pretty OK, kind of neutral reporting, still not following best practices. And as a journalist, that was really useful for me to see, especially to see it 50, 60, 70 times, again and again as a real pattern.
Toxic autism awareness
Our autism awareness campaigns of recent years have indeed made everyone aware of autism, but that public awareness does not match the facts. In fact, in many regards, John Q. Public is only aware enough of autism so as to be toxic to actually autistic people. This is serious. The definition of toxic by Merriam-Webster is “containing or being poisonous material especially when capable of causing serious injury or death.”
Today it seems socially acceptable to blame the evil behaviors of criminals on autism and reprehensible behaviors of politicians on mental illness. Don’t buy into this societally acceptable behavior. To buy into it is to perpetuate it. Each time you do so you are drawing that line between us darker, deeper and wider inviting fear to take up residence, distancing yourself from autistics and/or people mental illness, making us “those people,” the ones othered. In turn we are feared. Remember, people in power can do strange things when they are afraid. Is this the kind of world you want your children to grow up in?
Autism Awareness Month
Autism puzzle piece
Let them stim
When people feel comfortable sharing their perspectives, diversity can be a competitive advantage; but you can’t have true diversity of perspective without visible diversity. If you’re visibly different from the person sitting next to you, those differences will have played a part in shaping previous interactions and experiences for both of you. As a result, you’ll approach solving problems differently, and together, you’ll make better decisions that don’t give undue privilege to one perspective. Visible diversity is a strong proxy for diversity of perspective.
Guys and bots
Even though many people see “guys” as a harmless, genderless word, not everybody does. You can think of the opposite word to guys (for example: gals or girls) and wonder if a group of men would feel comfortable being referred to as girls. When someone refers to you using a word that you don’t identify with, it’s easy to feel excluded from conversation or misidentified.
This little bot is a small way we can bake in our values, culture, and practices into a communication tool we use every day.
The 21st was Down Syndrome day, which saw the amplification of #NotSpecialNeeds by self-advocates. The effort was accompanied by this great video.
I recommend following Mr. Perry on Twitter at@Lollardfish. He is a great outlet for disability perspective.
I incorporated the video and article above into my post on The Segregation of Special. Check it out for more disability and neurodiversity perspective on “Special Needs”.
Let’s stop using the word Special. It is tired and hack and in the way of inclusion.
Trans women “male privilege”
Even those of us who spend years in relative comfort with our gender are socialized in a vastly more complex way than Adichie posits. When she says that we are “treated as male by the world,” that’s partly true, but ignores the other ways trans people are treated in Western society: as mentally disturbed fetish objects Hollywood can mine for cheap material. Small wonder I was never able to get rid of that sense of wrongness; it was always being reinforced by the world around me. This comic by Sophie Labelleillustrates (heh) the problem with movies like, say, Ace Ventura: Pet Detective, or The Hangover 2, or any number of other movies where the idea of transness is played for shock and/or laughs. Whether you know you’re trans or not, society has many ways of making sure you know the consequences of straying outside your prescribed gender.
I relate to this tale of autism self-discovery.
The discovery of my Asperger’s/autism spectrum status was eerily similar for me, except for the “frightening world” part (the world into which I awoke is colorful, peaceful, comforting, nurturing, supportive, validating, connected, and loving). This was only made possible by the loving, supportive, and comforting people and blogs I found early on, however. Otherwise, despite an increased understanding, the world might have become an even colder, pricklier place.
Like Neo in “The Matrix”, I, too, realized the truth about the world, the truth about my role and my place in it, and indeed….who I really was. I realized that my own interaction with-and responses to-the world were based on an illusion of my own: the illusion that I was neurotypical and the accompanying assumption that I “should”, then, be like the “rest of the world”.
I, too, realized that my life up until that moment had indeed been lived under false pretenses.
And in a way, I have to retrace my steps and make a correction to something I said above-the part about the “frightening world”. To be clear, it’s not the world of the Asperger’s/autism spectrum that I found frightening. I actually find the Asperger’s/autism spectrum world infinitely more peaceful and comforting. Rather, it’s the general world at large that eventually has some changing to do. Inclusion and accommodation benefit everyone.
The “rest of the” world became a bit more frightening to me. Not the anxiety-inducing kind…more of the appalling, disgusted kind. Suddenly, I had given myself permission to view the world through a raw and honest lens, and it revealed itself to be one of irrationality, obnoxiousness, boorishness, confusion, rash judgments, and harsh criticism. I gave my permission to be honest with myself about what I saw, and what I saw was unpleasant.
So when I found out that Julia was making the leap to television, I didn’t want to get too excited. But the new videos, released in preparation for her network debut in April, give me tentative hope. In particular, the videos demonstrate care and attention to showing non-autistic kids how to interact kindly with autistic friends and classmates - something that could make the new generation of little Sarahs a lot less isolated, anxious, and unhappy. That’s why watching Abby and Julia singing together makes me weep. My heart’s breaking for what could have been if this kind of programming had existed when I was growing up, but it’s also growing three sizes over the thought that it might not happen again in the future.
Whether Big Bird is learning that Julia didn’t mean to offend him when she didn’t acknowledge him right away, Elmo is using his stuffed animal to initiate a game with Julia and her bunny, or Abby is learning to interact and play with her on terms that work for both girls, there’s a distinct focus on learning to socialize with autistic people in these segments that’s been missing from most autism-related media so far. For many non-autistic kids, this will be the first time that they’ve seen autistic kids as equal human beings whose differences can be celebrated instead of shunned. For autistic kids, this isn’t just the first time they’ll be able to see someone like themselves on screen-it might be the first time they’ve ever seen anyone like them treasured by their peers. The inclusion of interactions like this in one of the most influential and beloved children’s television programs of all times has the power to change what happens in classrooms and on playgrounds across the world.
AP stylebook on gender-neutral pronouns
Ableism, unintentional inaccessibility, rights-based supports, universal design
Thread on ableism and unintentional inaccessibility that touches on rights-based supports and universal design. Relevant to flash talks and GMs.
Variability and identity first
A specific manifestation of the argument that one autistic person cannot represent their community applies when considering the perspective of those people on the autism spectrum who don’t easily advocate for themselves. This includes people with intellectual disability and those who are non-speaking or who have extremely limited vocabulary. A great deal of autism research is focused on understanding and providing support specifically to those individuals, their families and their allies. How can we capture their opinions and filter those into our research?
A glib answer is to say that we should ask them. Of course this is true. We could all work harder to find effective ways to understand those autistic people who do not use traditional modes of communication. But this is a massive endeavour, and one in which I think we have only recently begun to make progress. In the meantime, I argue, talking to Autistic self-advocates and representatives of autistic-led organisations is a good starting place.
This isn’t to say that other perspectives should not also be taken into account. Parents, siblings, and people who provide professional support to people on the autism spectrum have a clear role to play. They can be proxy-advocates, with intimate knowledge of the likes and dislikes, strengths and needs of their loved ones. Furthermore, when developing new ways to provide support to autistic people, it is likely that parents and professionals will be involved in the delivery of those supports. Thus, we need to engage with these groups in their own right, as stakeholders in the design and outcomes of research.
BUT we are missng the point if we think doing so can replace engagement with autistic people themselves. Autistic people can elucidate aspects of the autistic experience which are common to many – what does it feel like to flap or stim? what does it feel like to be prevented from doing so? More than that however, I struggle to understand how anyone can claim to care about people with autism and intellectual disability if they don’t also respect people with autism and no intellectual disability. There is an interesting and important conversation to be had about how to better represent the voices of non-speaking autistics. We cannot begin to have this conversation if we don’t first demonstrate our respect for the wider neurodivergent community by listening to their voices, and amplifying them.
Ableism, exclusion, and intersectionality
Liz Spayd, the public editor of The New York Times, wrote an excellent piece noting that of the paper’s 20-plus political reporters during 2016, two were black, and none were Latino, Asian, or Native American. Susan Page of USA Todayresponded within minutes of my sending an initial email to say that the paper’s core political staff consisted of 10 women and eight men; and among those, two Latinos and one African-American. Their level of candor is both refreshing and rare. So far, several other news organizations have promised numbers but are still in the process of delivering.
So I’m going to put this out there for everyone to see. I’m looking for metrics on the racial and gender diversity of newsroom political teams-notes on how to share yours are below-and for us to self-report because it’s the right thing to do. We should not be ashamed by these numbers, whatever they are, but we should be deeply ashamed if we hide them.
Why write about diversity in newsrooms now?
Arguably, 2016 was the most racially contentious and gender-fraught election of the modern era. This election required extraordinary things of journalists. Sometimes we lived up to the challenge; but in many other ways, we missed the mark. When it comes to the diversity of our political reporting teams, it seems we can’t even find out what the mark is, because despite our proclaimed love affair with data, we won’t disclose our own.
Disability and dress codes
On the term “autism mom” and centering parents.
Toxic Masculinity, Predatory Men, and Male Paralysis
I work hard to practice what I preach and feel I make contributions small and even large to a kinder and more compassionate world - a world in which women and children need not ever fear men.
But even the best men walk in the wake of the worst men have given this world - the worst men continue to give to this world, and the females and children who must suffer for that.
Each man must moment by moment examine how he is culpable, where and how he stands in this world in relationship to females and children.
The dilemma of navigating the world as a man is couched in the unearned privilege, the potential for an abuse of unearned power that shouts out “First, do no harm.”
Ableist attendance policies
Event accessibility information
Thread on providing accessibility information for events.
Analyzing inspiration porn
This thread analyzes an inspiration porn meme.
Prove your disability
#ThePricePWDPay, #CripTax, and #AcademicAbleism
Trans Broken Arm Syndrome
Would a licensed medical doctor with years of training really be unsure of what to do with a broken arm just because it was attached to a transgender person?
That’s the simple question at the heart of a complex issue dubbed “Trans Broken Arm Syndrome.” The term was coined by Naith Payton at British LGBT site Pink Newson July 9 to describe when “healthcare providers assume that all medical issues are a result of a person being trans. Everything – from mental health problems to, yes, broken arms.”
This phenomenon is just one of many difficulties transgender people face when seeking healthcare. Even for something as common as a cold, trans people frequently don’t receive appropriate medical care due to a combination of under-educated physicians, insurance coverage denials, and fear of discrimination.
Anthony Corona died after being placed with his head between his legs for twelve minutes. In the aftermath, the coronor at least partially blamed autism for his death.
I’m looking for the actual report, but this trend of blaming a diagnosis, rather than the violence visited on the disabled body, is both pernicious and pervasive. This kind of restraint is lethal far too often to far too many people, and in the aftermath, medical and law enforcement authorities fixate on the disability rather than the action (even should the action be justified). See both Ethan Saylor and Eric Garner for widely publicized examples.
Race and racism in the Middle Ages
A lot of the excellent new work that has been done on race and racism in the Middle Ages-both in this series and also within academia-focuses either on telling the stories of people of color in the Middle Ages, or understanding how the racial categorizations of people of color came to be. But whiteness, as a racial category, was also under construction during this period. In medieval Britain, there was a centuries-long dispute over who had the right to feel British.
Over the course of the Middle Ages, ‘Britishness’-the right to claim British identity-became racial property. I call this racial identity a ‘property’ (an idea I’m taking from Cheryl I. Harris) to emphasize its status as an object of political power. Like real estate, Britishness in the Middle Ages became a thing to be owned. And it had value. By appropriating the anti-imperialist ideas of the very peoples they had subjugated, English writers represented themselves as the heroes of their political history.
Autism and Moonlight
Everyone is human. Everyone is mundane. We are all just mundane in our own specific ways
“It’s not about homosexuality at all. It’s about what happens to you when you can’t love anybody. It doesn’t make a difference if you can’t love a woman or if you can’t love a man”).
For the autistic viewer, I Am Not Your Negro should serve as a strong reminder of the importance of self advocacy.
Neuroscience and self-esteem
Mindset marketing is not support.
Ableist kink and relationship anarchy
Disability shouldn’t define you
Tech spreads hate
One the monetization of hate.
On a website owned by white nationalist leader Richard Spencer, Ellis saw an ad for his engineering company, Optics for Hire, pop up on the screen – even though he had never knowingly bought the ad.
What Ellis had stumbled on was a little-known facet of the booming world of Internet advertising. Businesses using the latest in online advertising technology offered by Google, Yahoo and major competitors are also increasingly finding their ads placed alongside politically extreme and derogatory content.
That’s because the ad networks offered by Google, Yahoo and others can display ads on vast numbers of third-party websites based on people’s search and browsing histories. Although the strategy gives advertisers an unprecedented ability to reach customers who fit a narrow profile, it dramatically curtails their ability to control where their advertisements appear.
“No one has any idea where their ads are going,” said Ellis. In some cases, he added, ad networks “are monetizing hate.”
Inclusive work culture
In 2013, I wrote a lengthy rant about culture in tech workplaces. It was a symptom of larger problems I was experiencing at the time-I was a woman of color drowning in a tech bro’s paradise. Constant rumors and bullying caused people to form cliques; alcohol was the only escape most employees had from the hostility. It was impossible for me to be productive, and I wanted to understand why.
The only answer was culture. I couldn’t change culture at this company, so I wrote about it then left as soon as possible. Nonetheless, the experience stayed with me. How do companies, I continued to wonder, design workplace cultures that retain employees? I spent the next few years learning from my time at other companies. Now, I would like to share some of those learnings with you.
Recently, “culture” has become a buzzword in tech. Free beer, ping pong tables, and other material perks such as endless snacks and sleeping rooms are often paraded as reasons for prospective employees to join. I was swayed by these kinds of benefits at a few points in my career. Each time, I found myself burned out, overworked, and undervalued after the honeymoon period passed.
Fancy offices and alcohol-laden parties, it appears, can’t replace a lack of direction. Organizational culture is about more than materialism.
Majorities and edge cases
The Googles, Facebooks, and Twitters were conceived as services for all. And yet, they were unsurprisingly born prioritizing the needs of their creators: primarily able, young, white American men. While many of these companies are trying to march to a more inclusive tune, much of Silicon Valley still designs exclusively for that particular American man. The rest of us are an edge case, someone to deal with after the “majority,” and only if it’s convenient for this said “majority.”
If you design with a white male majority in mind, the math is easy. Inconvenience the fewest number of people, allow an escape hatch for emergencies. But what happens when someone we consider an edge case actually receives a rape threat?
Designing for color blindness
The Mask You Live In – an exploration of American Masculinity
On the harm of “be a man”.
Acute and chronic
Backstopping is by nature a form of back-up support. It’s a tricky balance of recognizing that a potential crisis is arising and then giving me a chance to deal with it before stepping in to help or offer support.
Online safety guides
Some backstory on how my town (Dripping Springs) resisted exclusion. Seeing some folks slowly change their minds was heartening.
End the awkward
Wheelchair flow in NYC
Burnt Out: Experiences of Women on the Autism Spectrum
Successful to Burnt Out features women who’ve considered ourselves successful in our primary role. We’ve had to slow down or stop working. Some of us didn’t know why life became exponentially harder. Why we had burnt out. We realised our limitations and finally put names to them. Anxiety. Depression. Late in life, we found out it was also from being on the Autism Spectrum. How have we dealt with being a shell of what we once were? How did we go from being successful to burnt out? Where are we now in life’s journey?
Abianac, Karletta; Abbott, Lorraine; Isaacs, Kathy; Eartharcher, Laina; Marxon, Liz (2017-04-02). Successful to Burnt Out: Experiences of Women on the Autism Spectrum (I’ve been there too Darl Book 1) (Kindle Locations 30-34). Self Published. Kindle Edition.
Spoons, poverty, and disability
Racism + capitalism + ableism + education + the violence of the security state
Social/medical model misery calculator
One of the first things I wrote on my blog that came straight out of my head, and wasn’t a commentary on something else, was an idea I called the Misery Calculator.
It grew out my attempt to more fully understand one of the core ideas of disability culture … that the suffering in disability comes from ableism and external barriers, not from our disabilities themselves. I accepted this for years. Yet, I always found that there were some aspects of my actual disabilities that were hard to live with, and couldn’t be blamed on anything or anyone else but my own physical condition. When I got into disability blogging, I found others in the disability community, particularly “chronically ill” people and “spoonies,” who seemed to have the same experience, somewhere between the Medical and Social Models of disability. A perfectly accessible, non-ableist world would be a lot better in a thousand ways, but at least some of our disabilities would still be there, causing at least some amount of misery.
So I came up with six measures of “misery” associated with disabilities. Three of them are basically “medical,” existing in your own body, and three are “social,” factors that exist in the world outside of yourself. For this post, I’ve tweaked the categories and definitions a little, but they’re basically the same. I’ve also decided to change the name of the thing to Disability Calculator. Here are the measures, roughly defined:
Pain / Illness
How much do you hurt and / or feel like garbage?
Stamina / “Spoons”
How much energy do you have to do things?
Physical & Mental Functioning
How well or poorly is your body and / or mind operating?
How often are you blocked or inconvenienced by physical barriers?
Lack Of Tools & Supports
To what degree do you have or lack the tools and supports you need, and do they work right?
How much does disability prejudice deprive you of opportunities and / or add to your stress?
This corresponds to the Medical Model / Social Model idea. The six point set of measures, divided into two broad categories, allow you to get a feel for how much each “model” really describes your disability experience. You also get a 0 to 30 point measure of how much overall disability you experience, both Medical and Social.
Presentation accessibility and comic sans
The day my sister, Jessica, discovered Comic Sans, her entire world changed. She’s dyslexic and struggled through school until she was finally diagnosed in her early twenties, enabling her to build up a personal set of tools for navigating the written world.
“For me, being able to use Comic Sans is similar to a mobility aid, or a visual aid, or a hearing aid,” she tells me while we’re both visiting our family in Maryland. “I have other ways of writing and reading, but they’re not like they are for someone who’s not dyslexic.”