Transitioning from invisible to visible disability

It’s 9am, and I’m still in bed. I’ve been uncomfortably conscious for hours thinking about how I will spend my spoons. Gravity pulls like a sickness. Just being awake costs.

I have to go out in public today. I can’t walk or stand for more than 5 minutes without suffering. I need something to sit on everywhere I go. My journeys are a seating map. The grocery store has few seats, and they are often sticky. Aisles and aisles without seating means I have to bring my own. My rollator makes errands possible.

I’m dreading today’s doctors’ appointments. Doctors’ offices and hospitals have seating, but those seats are in sensory spaces that make me stim. I still have the reflex to pace to manage sensory overwhelm, but my body ain’t having it. I’ll gouge my scalp bloody instead.

I can walk when I must. I can push myself through as much as 20 minutes of standing and walking, but the cost is great. I need the rest of the day to recover from such a reckless waste of spoons.

I sometimes long for a wheelchair. Far from being confining, a wheelchair would be liberating. I could stim with movement. I could save some spoons. I could stay below my diminishing thresholds.

I dread the moment of rising from the chair in front of others, though. Getting up from a wheelchair to navigate an inaccessible threshold, reach for something, or simply stretch does not compute for our ableist societies. You are judged a fraud, a fake, someone trying to get something you don’t deserve.

A wheelchair is in my future. Without one, I can’t go on outings with my family without melting spoons. I can no longer push past the shrinking limits of my endurance. I’m using a rollator now, but it can be slow, uncomfortable going. Even with rollator assistance, walking is a struggle with pain and gravity. A wheelchair would be enabling, but using one involves a direct confrontation with systemic inaccessibility and ableism. Am I up for it? My body becomes more and more convincing about its need for a chair, but I am reluctant to put up with more ableism than I already experience.

Wheelchairs are the symbol of disability. Transitioning to visible disability would avoid some invisible disability tropes, but those would be replaced by other tropes. And the moment I demonstrate that I can still, for now, walk, that symbol becomes an indictment.

Diversity & Inclusion Recap #5

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
  • #AutisticWhileBlack
  • Toxic autism awareness
  • Autism Awareness Month
  • Autism puzzle piece
  • Let them stim
  • Corporate D&I
  • Guys and bots
  • #NotSpecialNeeds
  • Trans women “male privilege”
  • Autism discovery
  • Autism representation
  • AP stylebook on gender-neutral pronouns
  • Ableism, unintentional inaccessibility, rights-based supports, universal design
  • Newsroom diversity
  • Wheelchair-bound
  • 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
  • Backstopping
  • 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.

Source: Autism, empathy, and the mind-blindness of everyday people – Karla McLaren

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.

Source: Saving the Oceans With My Son and Adrian Grenier – Pacific Standard

http://autchat.com/eating-difficulties/

http://autchat.com/july-5-2015-eating-difficulties-revisited/

http://autchat.com/autchat-mar-19-2017-eating-difficulties-transcript-of-chat/

Decolonize science

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..

Source: We Need Decolonial Scientists | Decolonize ALL The Things

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.

Source: Why I’m Saying Goodbye to In-Class Tests | Vitae

#OwnVoices #CripLit

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.

Source: #ownvoices

Disability journalism

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.

Source: ‘We’re Not Burdens at All’: A Q&A on Media Coverage and the Murders of Disabled People – Rewire

#AutisticWhileBlack

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?

Source: Toxic Autism Awareness: Fact from Fiction? | Judy Endow

Autism Awareness Month

https://boren.blog/2017/04/01/navigating-autism-acceptance-month/

Autism puzzle piece

Let them stim

Corporate D&I

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.

Source: Monzo – Diversity and Inclusion at Monzo

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.

Source: 18F: Digital service delivery | Hacking inclusion: How we customized a bot to gently correct people who use the word ‘guys’

#NotSpecialNeeds

The 21st was Down Syndrome day, which saw the amplification of #NotSpecialNeeds by self-advocates. The effort was accompanied by this great video.

David Perry, a journalist covering disability and neurodiversity who is well-respected among self-advocates, wrote this piece for the occasion. Stop calling some needs special.

I recommend following Mr. Perry on Twitter at@Lollardfish. He is a great outlet for disability perspective.

Also, peruse the #NotSpecialNeeds and #SayTheWord hashtags.

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.

Source: What Trans Women Have Is Far More Complicated Than ‘Male Privilege’

Autism discovery

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.

Source: Adult Asperger’s / autism discovery is kind of like the movie ‘The Matrix’… – the silent wave

Autism representation

Representation matters.

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.

Source: The New Autistic Muppet Could Save People Like Me A Lifetime Of Pain

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.

Ableism threads

https://twitter.com/taylewd/status/84618203953974476

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.

Source: Autistic voices, and the problem of the “vocal minority” | DART

Ableism, exclusion, and intersectionality

Newsroom diversity

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.

Source: One question that turns courageous journalists into cowards – Columbia Journalism Review

Wheelchair-bound

Disability and dress codes

Autism mom

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.”

Source: Toxic Masculinity, Predatory Men, and Male Paralysis

Ableist gates

Ableist attendance policies

Event accessibility information

Thread on providing accessibility information for events.

https://ryelle.codes/2016/02/accessibility-for-wordcamps/

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.

Source: ‘Trans Broken Arm Syndrome’ and the way our healthcare system fails trans people | The Daily Dot

Blaming autism

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.

Source: How Did We Get Into This Mess?: Coroner Blames Autism. for the death a Latino Autistic Student held Upsidedown

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.

Source: Feeling ‘British’ | The Public Medievalist

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.

Source: Chiron, James Baldwin, and Autistic Experience | NOS Magazine

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.”

Source: For advertisers, algorithms can lead to unexpected exposure on sites spewing hate – The Washington Post

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.

Source: Catt Small on Designing an Inclusive Workplace Culture | Design.blog

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?

Source: Ash Huang: How Much Poison Is Acceptable in Our Technology? | Design.blog

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

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.

Source: Backstopping: Supporting the Autistic Person in Your Life | Musings of an Aspie

Meritocracy myth

Thread.

The Pipeline Problem and the Meritocracy Myth

Transgender census

Online safety guides

http://geekfeminism.wikia.com/wiki/Online_harassment

https://onlinesafety.feministfrequency.com/en/

https://www.adl.org/cyber-safety-action-guide

http://smartprivacy.tumblr.com/buy-it-now

Resisting exclusion

Some backstory on how my town (Dripping Springs) resisted exclusion. Seeing some folks slowly change their minds was heartening.

https://twitter.com/many_stripes/status/846434938538901505

Sensory overload

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

Thread.

#Chronicloaf #FilmDis

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:

Medical

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?

Social

Physical Barriers
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?

Ableism
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.

Source: Misery Calculator: Reheated, Renamed — Disability Thinking

Data bias

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.”

Source: Hating Comic Sans Is Ableist – The Establishment

Diversity and Inclusion Recap #4

In this one:

  • Autism self-diagnosis, #SelfDxIsValid
  • Ally Skills
  • Eugenics and deficit ideology
  • “Doing something” about autism
  • Networked protest, inclusion, and coalition building
  • Face blindness
  • 4Chan, GamerGate, and lonely toxic masculinity
  • Reporting on trolls
  • Bathroom bills and controlling women’s bodies
  • Unique ways white women enact racism
  • ASL syntax and injustice
  • Agency and institutions
  • Mental health and policing
  • Hierarchical ableism
  • Accountable activism
  • Racism + ableism
  • Addiction and injustice
  • Disability in America
  • Getting older in tech, life-long learning
  • Design thinking and exclusion
  • Unpacking the “common sense” of bathroom bills
  • Programming and prejudice
  • Technical Majority and Tech Forward
  • Her Story
  • Blog for inclusion
  • Civil rights data
  • Race in architecture
  • Domestic violence, stress cases, and personas
  • Mental health and stigma
  • Dyslexia and tech
  • Ethics in algorithms
  • Aro, ace, cishet, and allosexual
  • Exponential growth devours and corrupts
  • Identity, tribe, and voice
  • Intersectionally exhausted
  • A week as a woman
  • Respectful collection of data
  • Interaction badges
  • Low-functioning and high-functioning labels
  • Autism and LGBTQIA intersectionality
  • The ableism of #EndofDisability
  • Representation in online gaming
  • Uber

Autism self-diagnosis, #SelfDxIsValid

Getting an official autism diagnosis requires time, patience, money, and a quest for professionals in touch with neurodiversity and modern views of autism. The process can be a medical model gauntlet. #SelfDxIsValid

Autism self-diagnosis is a topic that can evoke strong feelings in many people. It isn’t unusual for adults to self-diagnose. It also isn’t unusual to get a lot of push back or even violent threats for self-diagnosis. Why does self-diagnosis make people so angry? More importantly, why do people self-diagnose in the first place? The hostility directed at self-diagnosis is, fundamentally, based in ignorance of what factors lead to its existence: Healthcare inaccessibility, rapidly changing diagnostic tools and the changing face of what autistic people and autism even look like.

While self-diagnosis shares the search for a vocabulary of self-expression, there are more sociological aspects that go into why it is so widespread to begin with. These aspects are not related to Tumblr or other popular social media platforms.

The root of self-diagnosis is a lack of good resources. A lot of people, particularly women and people of color, didn’t get diagnosed as children because autism was seen as a white, male disease. When I compare stories about my early childhood with male autistic peers, I am astounded at the similarities.

Some parents avoided formal diagnosis of their children because they wanted, desperately, for their children to be normal. Many people who were diagnosed later in life have developed their own ways of coping with a world that was not designed for autistics. Life may have been easier for them if they’d had access to certain supports.

As someone who was diagnosed as an adult, I feel the paradox of late diagnosis acutely. On one hand, I wonder if I would have struggled less in school if I’d had access to an individualized education plan, or even the awareness of why life was different for me than it was for my sister or my peers. I stumbled through most of my childhood angry, confused and often alone without knowing what I was doing differently. On the other hand, I feel extremely fortunate and grateful that I have not suffered through the applied behavior analysis and other abuses masquerading as treatment that has deeply scarred many of my autistic peers who were diagnosed as children.

Even if adults have histories and impairments that point to autism, autism is still largely viewed as a children’s disease. As a result, very few professionals can provide adult autism diagnoses. A diagnosis can include up to three days of cognitive testing if you can even find someone who is qualified to perform the tests in the first place.

The difficulty of finding professionals who deal with adult autism isn’t the main limiting factor in diagnosis though. That dubious honor falls to the sheer cost of an official diagnosis. Of the few autism specialists who are qualified to diagnose adults, only a tiny number take insurance.

Source: Autism Self-Diagnosis is not Special Snowflake Syndrome | NOS Magazine

I am also more aware that professional diagnosticians are human too with their own weaknesses and strengths. Some use “clinical judgment” only, like my current psychologist. She flat out denies I can or should receive any testing. Others rely heavily on testing or on developmental interviews. Professionals also have different areas of expertise. My first diagnosis was made under supervision of the psychiatrist at the autism center in the city I lived in at the time. My second diagnosis was also made by a psychologist with expertise in autism. My third official diagnosis, which was partly based on the second, was made by a psychologist with mainly expertise on blind people.

Source: Thoughts on Self-Diagnosis by #ActuallyAutistic People #SelfDXIsValid | Blogging Astrid

Because, getting an autism diagnosis is actually a very grey area. Yes, there are ‘official criteria’ but these are very much up to clinical interpretation, and often different tests are conducted by different professionals, reflecting both their own biases and also those of the country or area they are in. For example, my son was diagnosed by a multi-disciplinary team who were very much into ticking boxes, and conducting a gruelling battery of tests. And in a way that’s what they needed to do as it later became clear to me that they were fresh out of college and very inexperienced. My daughter got her diagnosis from the leading child psychiatrist in the country, who has written many books on autism, has over forty years of experience and is rumoured to be autistic himself. He was able to diagnose her in a much quicker and more efficient manner, using different tests but following the same criteria. He also relied on his experience and picked up on nuances others may have missed, as my daughter’s autism presents in a more atypical manner that doesn’t fit into many of the usual boxes. If she had been seen by those who diagnosed my son, she could have easily been denied a diagnosis. Yet she would have been no less autistic.

And that’s diagnosing autistic children. When I enquired about diagnosing adults, I was told that there were no professionals in my area who could do that through the public health system, and given a short list of private practices, mostly on the other side of the country. And this is where more of the ‘not just black-or-white’ nuance about getting a diagnosis comes in. There are some people who say that self-diagnosed autistics should ‘just go get a diagnosis if you’re so convinced you’re autistic’. They do not take into account the many factors that might go against this. My husband and I have discussed whether or not I should seek an official diagnosis. And have decided against it. Here are some of our reasons:

Source: My thoughts on Self-Diagnosis | autisticzebra

Ally Skills

With guidelines on terminology, terms not to use, workshop discussions, responding to oppression, and future ally work.

Guidelines for future ally work

  • Don’t expect praise and credit for fighting inequality –
  • Follow and support leaders from target groups
  • Assume people from target groups have more knowledge about their oppression and wait for invitation to help or explain
  • Follow your discomfort – if something makes you feel bad, find out more and understand why before reacting
  • When you make a mistake, apologize and move on

Source: Ally Skills

Eugenics and deficit ideology

The GOP is not the only party stuck in deficit model thinking, though it takes grit and bootstrap notions to eugenic lengths.

Trump’s comments are merely an open expression of a long-standing, institutionalized disdain for the poor and the sick.

But the Republican Party expresses this antipathy to dependency in vicious ways and in all avenues of public life. The GOP gets particularly vicious when dependency combines with race (eugenics and racism are toxins that have always reinforced each other anyway).

Republicans target weakness as energetically as eugenicists did. They have embraced capitalism so fully that they will admit no flaw in it. Confronted with inequality, they tell us the problem lies, not with the system, but with the individual and his incurable deficiencies. “We don’t want a dependency culture,” Paul Ryan said in2013. According to the Center for Budget and Policy Priorities, Ryan’s “Better Way” budget would increase the wealth of America’s extreme upper class while prohibiting new funds for the Affordable Care Act and expanding work requirements for welfare recipients. The implications-that the wealthy deserve to be even wealthier, and that the poor are poor because they make bad personal choices-have been long reflected in Ryan’s personal views on the subject.

Race and poverty and disability also intersect in a way that makes the eugenics comparison unavoidable.

Republicans are dedicated to perpetuating that system. Thus they cut welfare for the same reason eugenicists once sterilized the poor: Poor people drain resources better spent elsewhere.

If DeVos funds a voucher expansion in this manner, without also expanding the reach of the ADA, parents of students with disabilities would be trapped in under-funded, under-equipped public school districts. And that’s a throwback to a more discriminatory age of American history. Before the ADA, the IDEA, and the Education for All Handicapped Children Act, children with disabilities weren’t guaranteed access to quality public education. Instead, they were frequently confined to institutions or the home; a few attended disability-specific schools. Many were sterilized under eugenics laws.

If Price’s plan ever becomes federal law, he and his Republican colleagues will force Americans with disabilities back into their traditional role as an inferior class. People with disabilities will live shorter, poorer lives. We already have a real-life example of what this would look like nationally: In Texas, Medicaid cuts have already seriously harmed children with disabilities.

Their ideal society excludes us and every other group ever deemed an obstacle to prosperity. And when they come for us they will call it progress.

Source: Trump Has Turned the GOP Into the Party of Eugenics | New Republic

“Doing something” about autism

If you want to help autistics, ask them what they want. We do not want vaccine scares and eugenics.

  1. Focus on services for adults with autism
  2. Make access to education and autism services more equal
  3. Support research projects that are already in place

Source: If Trump Really Wants To ‘Do Something’ About Autism, Here Are 3 Suggestions | The Huffington Post

Networked protest, inclusion, and coalition building

Face blindness

I love cartoons. 🙂

Here’s what it’s like to watch a new television show or a movie while faceblind:

Source: How Faceblindness Makes TV and Movie Watching a Hot Mess – Autistic Academic

4Chan, GamerGate, and lonely toxic masculinity

Those of us in the tech trenches lived through ElevatorGate and GamerGate–which very much contributed to and presaged our current national and global climate.

Reporting on trolls

Bathroom bills and controlling women’s bodies

Unique ways white women enact racism

1 — White women use their status below white men to deflect from their racism.

2 — White women use their own white femininity as a bludgeon to harm.

3 — White women merge all men into one group while discussing misogyny.

4 — White women use “we’re all women” rhetoric, overwhelming familiarity, and niceties to disarm women and femmes of color.

Source: Unique Ways White Women Enact Racism – Medium

ASL syntax and injustice

Agency and institutions

Attacks on the ACA, Medicaid, and home care are particularly felt by those facing possible institutionalization and the loss of agency.

Mental health and policing

Hierarchical ableism

Accountable activism

Racism + ableism

Addiction and injustice

The notion that drug addiction is a brain disease is catchy but empty: there are virtually no data in humans indicating that addiction is a disease of the brain, in the way that, for instance, Huntington’s or Parkinson’s are diseases of the brain. With these illnesses, one can look at the brains of affected individuals and make accurate predictions about the disease involved and their symptoms.

This situation contributes to unrealistic, costly, and harmful drug policies. If the real problem with drug addiction, for example, is the interaction between the drug itself and an individual’s brain, then the solution to this problem lies in one of two approaches. Either remove the drug from society through policies and law enforcement (for example, drug-free societies) or focus exclusively on the ‘addicted’ individual’s brain as the problem. In both cases, there is neither need for nor interest in understanding the role of socioeconomic factors in maintaining drug use or mediating drug addiction.

An insidious assumption of the diseased brain theory is that any use of certain drugs is considered pathological, even the non-problematic, recreational use that characterizes the experience of the overwhelming majority who ingest these drugs. For example, in a popular US anti-drug campaign, it is implied that one hit of methamphetamine is enough to cause irrevocable damage: http://www.methproject.org/ads/tv/deep-end.html.

For their part, the scientific community has virtually ignored the shameful racial discrimination that occurs in drug law enforcement. The researchers themselves are overwhelmingly white and do not have to live with the consequences of their actions. I don’t have this luxury. Every time I look into the faces of my children or go back to the place of my youth, I am forced to face the decimation that results from the racial discrimination that is so rampant in the application of drug laws and is abetted by arguments poorly grounded in scientific evidence.

Source: Viewing addiction as a brain disease promotes social injustice : Nature Human Behaviour

Disability in America

“You don’t matter.”

“You’re not worth it.”

“You’re not a person.”

In his campaign, and so far in his presidency, that has been Trump’s message to me. And it’s not O.K.

What Trump has done is bullying and shaming people in the worst possible way — by judging them. I think about young people with disabilities. Has Trump given any thought to them? What about the teenager with a disability who’s getting bullied every day at school? What about the kid who has spent more time in the hospital than on the playground? What about the young woman struggling with self-esteem issues, desperately trying to come to terms with her disability? If mocking and bullying are seen as O.K., vulnerable people with disabilities may come to believe that they deserve it. I know from experience that this is a dangerous message to send.

The truth is, I’m afraid. I’m afraid of living in a country that would shun people with disabilities as if they didn’t exist. I’m afraid to live in a country that sends these kinds of messages and think it’s perfectly all right. Because it’s most definitely not all right and never will be.

Source: Disabled, Shunned and Silenced in Trump’s America – The New York Times

Getting older in tech, life long learning

After years of scoffing at talk of prejudice in the information technology field — as a white male with good hair –, I’m starting to call prejudice against my being old(er). It’s true: age discrimination is a real thing.

Since 2008, the number of age discrimination complaints has grown to around 25,000 a year. Some may argue that everywhere we turn these days, someone is complaining about something being unfair. Alright. Let’s not just take complaints into account. But rather, let’s look at the average age of IT workers at well-established companies. Facebook: 28. LinkedIn: 29. Google: 30. To put that into perspective, the average age of all U.S. workers is 42. Well above the average age at these companies. Even Mark Zuckerberg once publicly said, at an event held at Stanford: “I want to stress the importance of being young and technical. Young people are just smarter.”

When I hear someone say they have 20 years of experience, I wonder if that’s really true or if they merely had 1 year of experience 20 times. I’ve known too many developers that used the same techniques they learned in their first year of employment for the entire span of their career.

My point is certainly not that these younger developers were smarter. It’s that many programmers let themselves grow stale. And the bigger problem is, after doing the same year’s worth of experience ten times, many programmers forget how to learn. Not only can it be extremely hard to catch up with ten years of technology, it can be next to impossible if you’ve forgotten how to learn.

If you plan on being in the IT field for more than 10 years, you need to be a lifelong learner. I’ve always been a lifelong learner.

Treat this year as if it were your first year as a developer and assimilate everything you can. Reclaim the energy you had in your first year of coding. Regain the drive you had to prove to yourself and to your employers that you were “all that” for this IT field. Resume reading about tech, playing with new techniques, and persuading others to teach you. Reacquire the excitement of collaborating on newfound knowledge with other developers. Be a lifelong learner and investigate all forms of learning, including:

Source: On Getting Old(er) in Tech

Design thinking and exclusion

Today, the Creative Reaction Lab holds workshops and pursues other projects that address several areas affecting marginalized communities, such as education, employment, and gun and domestic violence. And the workshops aren’t just for designers; they also bring together policy experts, speakers, community partners, and citizens working in different fields. Importantly, they look and sound nothing like a design event. You will not hear Carroll preaching about “design thinking” or solutionism. Rather, the Creative Reaction Lab starts from the premise that design’s greatest value is in exposing the invisible mechanisms of inequality, many of which were by design themselves. Here are three key insights the CRXLAB has gleaned from using design to combat systemic injustice.

DESIGN THINKING HAS AN EXCLUSION PROBLEM

She purposefully describes CRXLAB’s workshops, for example, as spaces that use “creative problem solving” to address instances of inequity, rather than the commonly used “design thinking.” The latter, which originated in the field of design but is now used more broadly in business and social sectors, is a solutions-based process that relies on the feedback of the end user. “While I’m a fan of it, I think it’s flawed, because it’s a system that continues to have outsiders,” says Carroll. The people who are being designed for are invited to give their perspective and to give their feedback, but are otherwise left out of the design process.

the communities that are impacted the most by a movement should have a prominent place in leading the movement. “You cannot say that you are effectively addressing these issues if you are not including the people affected by them into your efforts, and giving them access to power,” Carroll says. To come up with community-led responses to racial inequity in St. Louis, CRXLAB not only consults with the black and Latino communities who experience that inequity; they are the people participating in the workshops, benefiting from the resources, and building out their ideas.

ACT FAST—THEN KEEP ITERATING

Importantly, the workshop did more than just get people together to discuss ideas—it got them to start working on them that night, which built momentum.

“APPROACHES, NOT SOLUTIONS”

These systems are so embedded into history and society they are invisible to many, meaning there’s no one simple thing to solve for. That’s why Carroll prefers to use the word “approaches” rather than “solutions” when talking about the results of CRXLAB’s work. “I like the word ‘approach’ because it shows this is not a finite type of solution—it’s flexible, it’s agile,” she says. “I’m a ‘drops in the bucket’ type of girl.”

Source: Want To Fight Inequality? Forget Design Thinking | Co.Design | business + design

Unpacking the “common sense” of bathroom bills

This thread applies critical thinking to the “common sense” argument for bathroom bills.

Programming and prejudice

With comments from Anil on platforms pretending we’re neutral to avoid regulatory and social infrastructure.

Technical Majority and Tech Forward

Her Story

http://www.herstoryshow.com/season-1/

Blog for inclusion

Civil rights data

Race in architecture

The most craven instincts drove these statements, and they are to be repudiated. They are completely at odds with the fundamentally progressive mission that architecture not only represents, but that virtually every student and faculty member that I know in architecture espouses.

Leadership in the field has to be way more diverse. We need to see a complete sea change in who is running this profession. Because it isn’t just about the diversity of identity politics; it’s about the work that architects create and how they impact the cities in which they work.

As I became more interested in theory and questions around race and my own background and family history, I kept thinking, “Well, why isn’t my experience in the architecture narrative?”

I have an undergraduate education in architecture as well, and I never saw anything about work by black architects or architecture about black people unless it was traditional African architecture or the pyramids in Egypt. That’s as far as it went.

The content of what I was learning was very Eurocentric—the histories, the methodologies, all of the references. You’re in this space of whiteness; my critical questioning came about through a kind of absence of representation.

If we don’t change the body of knowledge, then people will always have that same reaction. You have to change the terms for it to have a profound effect.

The entire hip-hop culture is a critique of failed urban planning and architecture, so who better to now come and try to solve some of those issues than the hip-hop community? Now that you have individuals, such as myself, who went through the traditional architectural educational process, and also grew up in some of these failed areas, we have an opportunity to help solve some of the mistakes of modernism made in urban cities.

When stylistic approaches are applied in different regions, different cities, different states, it restricts the opportunity to create specific vernaculars that speak directly to the people in those communities. Those cookie-cutter approaches—take housing projects, these tall mountainous towers—are directly related to the destruction of African-American communities.

The profession needs to accept this idea that a lot of minorities might not follow some of these stylistic approaches of the past because those approaches have a direct relationship to significant traumas. Architectural curriculum is based on these stylistic approaches, which creates additional problems for new ideas and new concepts.

For a lot of designers and architects starting out, we often have to take very low-paying or unpaid internships. But if you don’t come from a privileged background, you can’t afford to do that.

How can you ask a kid from a minority background whose family doesn’t make that much—and the kid probably has $50,000 to $100,000 in loans—to take a long, unpaid internship? That’s a very unfair thing. In order to improve diversity, they have to completely make unpaid internships against the law.

I think that the greatest thing to happen to diversity was the advent of the internet. If you have a good idea, if you have a good project, don’t wait until somebody gives you an opportunity to take it out there—use the internet as a tool. Don’t wait for people to hand things to you, because you will wait for a very long time.

Source: 16 architects of color speak out about the industry’s race problem – Curbed

Domestic violence, stress cases, and personas

Mental health and stigma

Dyslexia and tech

‘Please enclose your CV and cover letter’. A statement that makes many dyslexics tremble and in itself I’m sure will have stopped thousands of gifted individuals from bothering to apply. When you’re being told that the first thing in the hiring process is to review a CV and cover letter, it’s easy to lose hope. Especially if, like me, you often look down to find your paper empty after 2 hours. All key skills for businesses during these times were based on paperwork, organisation and writing. For some dyslexics, myself included, even writing a simple sentence can cause anxiety.

The arrival of the computer and the adoption of the cloud have been nothing less than a miracle for the dyslexic brain. Social media, in particular, has changed business forever, the combination of web and mobile has dramatically altered people’s way of communicating, which has led to a drastic shift in the needs of businesses, almost overnight. Some content has been reduced to 140 characters instead of long story telling. Many websites have switched from written content to visual. Users’ attention spans have narrowed, making creativity in marketing a key skill.

Dyslexic brains have been identified not as worse or less intelligent, but as different, with different characteristics and capabilities. People with dyslexia may have a learning ‘disability’ when it comes to the traditional way of education. If success is based on spreadsheets and 30 page long documents, then yes, I have a disability. But people with dyslexia can have a different way to approach and process information and often find that they can be very skilled in other areas such as creative and spatial fields with abilities to engage a bigger picture approach. They can often see a problem from various angles at the same time, and sometimes their unique way of viewing the world gives those with dyslexia the advantage of creativity, ideas and imagination. And as technology advances, traditional business goals like productivity can very well become automated. Spreadsheets and documents can very well find and correct grammatical and spelling mistakes. Miraculous software like http://www.grammarly.com take this even further, giving anyone the possibility to write on the web with no grammatical or spelling mistakes, just by having it as an add-on on your browser, balancing thus the scales between dyslexic and non-dyslexic individuals when it comes to writing and changing the lives of people like myself in the workplace.

With this in mind, those with dyslexia can embrace and excel in the current technology climate, where the playing fields appear to have levelled and success is measured in innovative thinking. This is an environment where those with dyslexia could find themselves naturally at the top of the pile and included in determining the future direction of the technology industry itself.

Source: Why breaking down the ignorance to dyslexia will change the world | Jonathan Scott | Pulse | LinkedIn

Ethics in algorithms

Emily Gorcenski on algorithms outing people, facial recognition biases, inferred behaviors, databases, and more.

Aro, ace, cishet, and allosexual

Interesting threads on aro (aromantic), ace (asexual), cishet (cisgender heterosexual), and allosexual (not asexual).

And here’s some great history on the LGBT[QIPA] acronym:

Exponential growth devours and corrupts

The internet and tech are wonders that bring people together. They connect autistic people like me. They connect the disabled. They bring marginalized people together where we can build communities and provide the support and psychological safety we lack in the structurally racist, sexist, ableist, and childist societies our bodies inhabit. Without the internet, many of us would be detached from identity and tribe. We’d have no voice. We’d be unemployed and homeless. We’d be dead.

Technology also sacrifices our souls to growth. Growth is the great corruptor, and the companies running much of the modern economy run on exponential growth. Companies prey on the automatron class. Let’s stop feeding them automatrons and instead educate digital citizens who can take back some power, restore lost humanity, and challenge the post-employment, unpaid internship, automatron economy.

There is no higher God in Silicon Valley than growth. No sacrifice too big for its craving altar. As long as you keep your curve exponential, all your sins will be forgotten at the exit.

Principles are no match for the long-term corrosion of market realities and expectations.

It’s a hyper-evolutionary process that rewards the most extractive, most addictive, most viral strain from the cohort. The key measurement isENGAGEMENT. Who cares about the virtue of the endeavor, as long as your product is maximally addictive.

The normalization of questionable motives in the public perception is key to enabling the next iteration to proceed without obstacle.

Data mining has also successfully been rebranded to the more palatable Machine Learning. Who wants to stop anyone, human or machine, from learning? What are you, the digital taliban?

How can we turn more of the Twitters and Facebooks and Googles into generics? What shifts in underlying technology and cost do we need to hit to make it feasible to run something like Twitter on Wikipedia’s budget (and fund it by donations rather than ads)? What if the next Big Idea looked more like email and less like the walled gardens of today?

Technological and algorithmic advances from closed-source software have been turned into generics via open source. With spectacular commercial success, no less. As one boat sinks, a thousand new ones float. One software company or product’s death is easier to celebrate, rather than mourn, when you know the intellectual organs are giving life to ten new ones.

Yeah, the automatron class. People treated as literal cogs in transportation and delivery machines. Complete with machine-like tolerance specifications for quality. Dip below a 4.7? You’re in trouble. No explanations. No room for a bad day or a bad week because the bills were mounting. No room for humanity, no room for frailty. Just put on your happy face and Have A Great Day.

Friction is interaction. Human psyches rubbing against each other. And in this friction-less society we wonder how on earth someone could vote Brexit or Trump. It wouldn’t be such a mystery if we didn’t do all we could to isolate ourselves from the world.

And I think that’s the truly insidious part of the tech lords solution to everything. This fantasy that they will be greeted as liberators. When the new boss is really a lot like the old boss, except the big stick is replaced with the big algorithm. Depersonalizing all punishment but doling it out just the same.

Because competition is for the little people. Pitting one individual contractor against another in a race to the bottom. Hoarding all the bargaining power at the top. Disparaging any attempts against those at the bottom to organize with unions or otherwise. Ragging on that as “untapped energy”.

As Douglas Rushkoff says, we need a new operating system for startups. The current one will keep producing the same extractive and monopolistic empires we’ve gotten so far. No, what we need is a new crop of companies that are institutionally comfortable with leaving money on the table. Leaving growth on the table. Leaving some conveniences and some progress on the board, in order to lead the world into a better direction.

Source: Exponential growth devours and corrupts

Identity, tribe, and voice

I’m always going on about identity, tribe, and voice. Neurodivergent and disabled kids need these.

Intersectionally exhausted

A week as a woman

Respectful collection of data

  1. Ask affected communities for their input.
  2. Identify whether you truly need all of the information you ask for.
  3. Explain your purpose and your privacy policy.
  4. Offer multi-select checkboxes, not single-select radio buttons.
  5. Allow users to self-describe.
  6. Do not require a response.
  7. Consider your defaults.
  8. Consider the presentation and influence of your survey.
  9. Learn how to write questions about gender and sexuality.

Source: Respectful Collection of Demographic Data – SheNomads – Medium

Interaction badges

I added this interaction badge spotting to my Interaction Badgespost.

Low-functioning and high-functioning labels

I’m so freaking tired of people throwing around functioning labels. “High” functioning autism. “Low” functioning autism. “Moderately,” “mildly,” or “severely” affected by autism.

Aside from the fact that these labels are arbitrary, divisive, imprecise, and inaccurate, they just don’t make sense. As someone (not me) brilliantly stated, “Low functioning means that your strengths are ignored; high functioning means that your deficits are ignored.”

There are several GREAT blog posts about functioning levels written by adult Autistics and by parent allies that discuss functioning labels far more eloquently than I, and I encourage you to read them.

In discussions about treatment, about services, and about “cure,” the false dichotomy between the “levels” of autism is ever-present.

The “high-functioning” people are supposedly “draining resources” needed for others – that’s IF they’re even accepted as truly being autistic and not just “quirky.” (Because of course they’re “too high-functioning” to understand “what it’s REALLY like” to be on the spectrum.)

And the “low-functioning” people are “suffering” and their families are supposedly “desperate” for “any” treatment that will help – be it compliance training, questionable biomed, or even the ever-elusive “cure” of the month being peddled by autism’s many snake-oil salesmen.

NO, I don’t think everyone on the spectrum is the same. YES, people present differently. That’s why it’s considered a “spectrum.” There is a phrase that some people use pretty frequently that describes this well: “If you’ve met one person with autism…you’ve met one person with autism.” Although in recent years that phrase has unfortunately been used unkindly by some autism parents as a dismissive tactic to silence adult Autistics who are “not like my child,” I think the phrase’s original intent before it was twisted by others was to acknowledge the heterogeneity of the autism spectrum.

Source: Respectfully Connected | Face the truth: what you REALLY mean when you say “low-functioning”

Autism and LGBTQIA intersectionality

I added a reference to this piece in my post on Neurodiversity and Gender Non-conformity, Dysphoria and Fluidity.

The ableism of #EndofDisability

A hashtag that smacks of eugenics is not a good choice for a talk on disability.

Representation in online gaming

Overwatch is popular in my house. The release of a new character is a big event. Sombra’s release was eagerly anticipated.

We’ve noticed and appreciate the efforts at diversity, inclusion, and representation. I’m glad to see my elementary school aged boys and their peers playing as the female characters regularly, appreciating the skills of each. There are lessons in inclusive team building based on strengths and differences to be had in Overwatch.

Source: ‘Overwatch’ reveals one of its playable characters is on the autism spectrum

Uber

Susan Fowler’s piece on her year at Uber created a lot of necessary discussion and soul searching. Here are some reactions.

Sexism is a problem everywhere. In politics, in publishing, in academia. If this is a wake-up call for HR, for SREs, and for Uber, then that’s wonderful. But it needs to be more. It needs to be a wake-up call for everyone.

Source: Reflecting on Susan Fowler’s Reflections – Medium

It’s time for Silicon Valley to realize that being a good employee means more than just being good at your job—and that being good to employees means more than just stock options, free snacks, and a foosball table.

Source: An Ex-Uber Coder’s Accusations of Discrimination and Harrassment Show Tech Still Has a Big Problem | WIRED

Neurodiversity and Cognition Representation

Discussion at Automattic about our branding guide and D&I statement has me thinking about neurodiversity representation.

From our D&I statement:

Diversity typically includes, but is not limited to, differences in race, gender, sexual orientation, gender identity or expression, political and religious affiliation, socioeconomic background, cultural background, geographic location, physical disabilities and abilities, relationship status, veteran status, and age.

People want to see themselves represented when they read these lists of identities. Disability is often forgotten when talking diversity. Contributor covenants and corporate D&I statements are much better about including disability these days, but disability is still forgotten or diminished in many communities and movements.

While we’re getting better at acknowledging disability, neurodiversity is almost always forgotten. It’s not even on the radar. The biggest part of my identity–my operating system, my sizzling wires–doesn’t make these lists.

Perhaps we can acknowledge neurodiversity by adopting the “infinite variation in neurocognitive functioning” language that many neurodiversity self-advocates use. The social model applies to minds and bodies. Let’s not leave out the minds. Our varied operating systems make teams great. Acknowledging neurodiversity can be as simple as introducing the word “cognition”. Neurodiversity communities often use “wiring” and “operating system” metaphors, but “cognition” seems better for a general audience. The dictionary definition suits:

the mental action or process of acquiring knowledge and understanding through thought, experience, and the senses.

Adding “cognition” provides neurodiversity representation without pathologizing. I can see myself in that word, but I’m steeped in the language of the social model. Do you see yourself in the word cognition? Is it too clinical and scary? I prefer social model language to medical model language (identity > diagnosis, agent > patient), but cognition shows up in pretty much every definition of neurodiversity. Neurodiversity is the social model for cognition.

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

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.

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.

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

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.

Source: Autism and the Pathology Paradigm

Bathroom Bills, Neurodiversity, and Disability

My oldest, a baseball fan, coined the term “stallbatting”. Stallbatting is interfering with someone going to the bathroom of their choosing. Bathrooms can be anxious experiences for neurodivergent and disabled people who need assistance. Bathroom bills ratchet that anxiety by emboldening fear and hate. Unisex and family bathrooms are wonderful, and often scarce. We are left with assisting our opposite sex family, friends, and clients in binary gendered bathrooms, hoping nobody makes a fuss, hoping we can relieve ourselves in peace. Bathroom bills steal that peace. Bathroom bills hurt the disabled. Bathroom bills hurt the neurodivergent. Bathroom bills hurt my family and hurt my transgender friends and coworkers. Bathroom bills are incompatible with neurodiversity, the social model of disability, and the norms of work and collaboration.

Kids on the autism spectrum are seven times more likely to be gender non-conforming, adding an often overlooked element to this debate. Protecting LGBTQIA kids protects also neurodivergent kids—and vice versa. The fight is for inclusion and acceptance—for all operating systems, for all of our different ways of being human. Supporting our kids means supporting all of their possibilities and expressions.

Excerpted below is neurodivergent and disabled perspective on bathroom bills. Our lives are complicated enough without ableist intolerance getting between us and a bathroom.

And as many people with disabilities and caretakers can tell you, the right to safe and accessible public restrooms is also important for adults and older children who need accommodation, assistance, or supervision. It’s an issue that becomes especially difficult for people with disabilities who have caretakers of a different gender. Even without repressive state laws, discrimination and harassment against people with disabilities and their caretakers persists.

In North Carolina, however, people with disabilities and their caretakers risk being criminalized just for accessing a public bathroom.

This is thanks to North Carolina’s HB2. While most people are familiar with the way the bill discriminates against trans people, disability community activists have taken to the internet and protest to let lawmakers know that bathroom bills are a violation of many disabled people’s rights, too.

We can see this as one of many intersectional issues surrounding violence against, and the criminalization of, people with disabilities. Just yesterday, graphic news came from Japan that a man had murdered 19 people at a home for people with disabilities in a hate-motivated attack. And days after the shooting last week of a black behavioral health caretaker, Charles Kinsey, Miami police revealed that the officer who shot Kinsey was actually aiming for the patient he was caring for, Arnoldo Eliud Rios Soto, who has autism – as though this somehow made the sick abuse of police power better. It’s a fear that people of color and people with a number of disabilities, and their loved ones and caretakers, know too well: That innocent behavior will be stigmatized, and even fatal, for members of communities criminalized for who they are.

We can look toward bathroom bills as one of many pieces of legislation that reinforce the stigma people with disabilities – who are often marginalized in multiple ways – already face, criminalizing many people’s normal biological functions. These blatantly discriminatory bills have swept legislatures across the country as part of a wave of over 100 anti-LGBT bills. These laws mandate that trans people, and everybody, use the public restrooms of their “biological sex,” whatever the hell that means.

Source: Bathroom bills hurt people with disabilities

In March, North Carolina legislators passed a law barring trans people from bathrooms and locker rooms that do not match the gender on their birth certificates. For trans people with autism, who are often socially naïve and unaware of how they are perceived by others, such laws present a very real threat of the kind of confrontation they are ill-equipped to manage. Strang’s group works to help the children and teens in their program deal with such challenging situations. “We focus a lot on safety,” says Strang, “what it means to be trans in different types of communities.” Autism can create blind spots around those issues, he says, but he and his colleagues also recognize its gifts, such as intense focus and concentration.

Grobman too sees those aspects of autism as integral to her effectiveness as an activist. Her intense focus on trans and disability rights may be an obsession of sorts, she admits, but unlike her childhood preoccupation with the game Pokémon, this fixation is not trivial. Living with the threat of being bullied, assaulted or arrested for using the ‘wrong’ restroom generates near constant anxiety. Grobman says she feels driven to work for the kind of social change that will make the world a safer place for people like Ollie, Natalie, Jazzie and herself. “We need to create an understanding of the validity of trans experience and autistic experience,” Grobman says. “You are fighting for your own existence.”

Source: Living between genders | Spectrum

As a woman with a disability, I require assistance in the restroom. I have always required assistance in the restroom. When I was a child out in public with my single-parent father, using the restroom was always a tough issue to navigate. Family, or unisex, restrooms have only recently become more common.

Whenever I would go out with my father and I needed to use the restroom, he would have to sneak me into the men’s restroom, or I would have to sneak him into the women’s restroom. In extreme circumstances, we would need to ask one of the employees of the facility to put up a sign on the door to prevent people from entering.

Going into the opposite-sex restroom became the norm for us. It was either use the restroom or end our outing and return home.

I couldn’t help but find it entertaining when former Republican presidential candidate Sen. Ted Cruz said that “the idea that grown men would be allowed alone in a bathroom with little girls” was unsafe. Why did I find it entertaining? Because that was my experience when I was a little girl. The only thing that happened to me was that I relieved my bladder.

Another type of relationship affected by the bill is the one between personal care attendants and the person being assisted. According to Paraprofessional Healthcare Institute, 89 percent of personal care attendants are female. The U.S. Census Bureau reports just over 17 percent of American men have a disability compared to almost 20 percent of women. This means that men with disabilities are more likely to get attendants who are women. What happens when a man with a disability is out with his female attendant and he needs to use the restroom? Does he hope that there is a family restroom nearby?

If we allow restrooms to be more fluid and accommodating for different life experiences, we include transgender people, people with disabilities who may require “unconventional” assistance and parents with young children. There are multiple ways of examining a social justice issue, and I encourage you to look beyond your personal experience and consider different walks of life.

Source: ‘Bathroom Bills’ Affect People with Disabilities | Paraquad

Anyone, who is caring for a seriously impaired person, who is his/her opposite gender, will also experience hardship from the passage and enforcement of segregated bathroom laws. I often think, when some nasty stranger feels compelled to judge, snark at me, or yell at my son, isn’t our life complicated enough? Perhaps we should instead get some understanding and help instead of dismissal and condemnation.

I’d say the same for what the vast majority of transgender people have endured their entire lives – the dismissal and cruel attacks. What ever happened to live and let live? Must so many people who are different dread something as fundamental as going to pee in a public restroom? Is it more a sign of the degradation of society, that we make exceptions to the rules of segregated restrooms for some people who are different or differently abled, or is the true degradation that the bigotry of some against “other” is so pervasive that we’re reduced now to making laws about where people urinate?

It is crucial to understand that passing strict gender segregation laws not only demeans and endangers our transgender brothers and sisters, but also puts severely disabled people with caretakers of the opposite gender in extreme danger in many cases.

Source: How do the new bathroom laws affect kids with special needs? / Page 3 / LGBTQ Nation

Although I may not be trans myself, I definitely have a vested interest in this issue. As a 33-year-old woman with a disability, I understand what it’s like to have limitations put on you by a little stick figure placard when you are at your most vulnerable – when your bowels and/or bladder are busting at the seams.

Not only could the appearance of more unisex and/or inclusive restrooms be a great solution for those targeted by the bathroom bill, but (on a purely selfish level) it would make my life a hell of a lot easier.

Aside from the concern of too-small stalls and sinks I can’t reach, public restrooms have always been my Achilles heel. I hate them with the passion of a thousand fiery suns.

When I was a teen, I would go to the movies and other events with my dad. If I happened to drink one too many Icees, I was – quite literally – up shit creek without a paddle. Unless we could find the rare unicorn that is the one-seater family restroom (which barely existed back then), there was no good option.

In lieu of driving me into a rage of teenage embarrassment by (GASP!) visiting the ladies’ room with dad in toe, I would just opt to hold it… often for several hours, and much to the detriment of my bladder. At the time, I didn’t feel comfortable going in a men’s room, and it would be weird to see a 6-foot-tall bald cis man hanging around outside a women’s room stall, right?

It’s frustrating, and even more so because I know I’m not alone in this awkward pee-pee waltz with propriety. Ask any cross-section of people with disabilities, and you will hear a choir of amens – and, likely, some amusing stories.

Inclusive restrooms could be a welcome respite for a huge population of people beyond just people like me and people who don’t identify with the gender they were assigned at birth.

These bathroom bill crusaders and self-appointed “morality police” probably haven’t considered what a game-changer Ally-McBeal-style bathrooms could be for caregivers of elderly relatives, parents of young people, and adults who, due to intellectual or behavioral disabilities, need assistance in the bathroom.

Source: Why This Cis Girl In A Wheelchair Cares About Bathroom Bills | Ravishly

Today, a father who took his disabled daughter into a men’s room in a public building in North Carolina technically would run afoul of the state’s so-called “bathroom bill,” which requires that people over the age of 7 use the bathroom that matches the sex on their birth certificates. While the law is aimed at transgender people, disability advocates worry that it also could affect people with disabilities who, because they need assistance from an opposite sex caregiver or parent, also use opposite sex bathrooms.

With restroom access a topic of national debate, many people with disabilities and their families are hoping that conversation extends to expanding access to public facilities for every person.

For many of the nearly one in five Americans (and about 5 percent of school-age children) with some disability, lack of access to public toilet facilities challenges their ability to take part in ordinary daily life. For some, like Ms. Serge, 46, who was born with cerebral palsy, the challenges are primarily physical.

Source: The Other Bathroom Wars – The New York Times

There’s also a deeper level to the debate swirling around restroom access, said historian Alice Dreger, author of “Galileo’s Middle Finger: Heretics, Activists, and One Scholar’s Search for Justice.” The need to fit into the world of gendered bathrooms and locker rooms is the justification doctors sometimes give for performing surgery on infants born with ambiguous genitalia. Doctors often guess a gender, she said, but it’s not always how the person ultimately identifies. These surgeries are dangerous and not easily reversible.

And what if, as one writer asked, you’re “an American with traditional views on gender, your kids are in a public school, and the girls’ locker room has just been declared a gender-fluid zone”? Indeed. What if it has been? That declaration was a long time coming, given that all locker rooms, and all of nature, have always been a gender-fluid zone.

So perhaps science can add something to the debate by showing where these restroom laws are not only hurtful but also unrealistic. Not everyone fits neatly into the categories of male and female, but everyone needs to go to the bathroom.

Source: Men’s Restroom or Women’s? Nature Is Never That Simple – Bloomberg View

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

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

Autistic Burnout: The Cost of Coping and Passing

Being an autistic labeled “high-functioning” or having “high-functioning” depression or anxiety means being doubted and having your identity questioned. Exhausting efforts to pass and mask are given little credit—sometimes tossed aside with an “I do that too”—and held against you in those moments of burnout when you can longer pass, mask, and cope. Ableist tropes regarding hidden disability are the reward for passing.

Autistic burnout, it permeates every area of your life.

Burnout can happen to anyone at any age, because of the expectation to look neurotypical, to not stim, to be as non-autistic as possible.

Being something that neurologically you are not is exhausting.

Source: Ask an Autistic #3 – What is Autistic Burnout? – YouTube

Then, life got harder each day because of the effort needed to pull off the passing in order to maintain. But, it was also wonderful to not have to constantly worry at the grocery store. It is hard to grocery shop when you live in poverty because generally the more healthy the food the more it costs. It means you can have a few healthy things, but not enough to really have an overall healthy diet. I enjoy eating healthy.

But here is the rub – even though I now look “normal” even though I am autistic, it is too exhausting to maintain. I am noticing across my life that whenever I learned a new skill, the bar was set higher and I was, from that point forward, expected to always have that skill available and to use it even if using the skill depleted ongoing large amounts of personal resources.

In my life, because I have been able to learn new skills with the result of looking more neurotypical, I have dug a hole for myself that I cannot now get out of as the bar of expectation for me to look/act “normal” has been raised. I am currently passing in public so well that people often can no longer tell by looking that I am autistic.

I know in the field of autism we have made it our goal to get autistics to look neurotypical as we hold that as the prized norm. Many people congratulate themselves when it happens. I am here to tell you (just as countless others from my tribe have done) that this may NOT wind up to be a good thing for autistic people.

Once we appear “normal” we are expected to always appear normal. To do so comes at a great expense. Ultimately, for me, passing as “normal” means that I am now a fake person, never able to be myself without putting my ability to make a living in jeopardy. Because I am close to retirement age I am hoping I will make it.

Source: ‘Autistic Burnout’ by Judy Endow, MSW

Regression can refer to a specific set of skills or abilities:

  • progressively losing the ability to speak

  • deteriorating executive function

  • reduced memory capacity

  • loss of self-care capabilities

  • loss of social skills

  • reduced ability to tolerate sensory or social overload

It can also refer to a general loss of the ability to cope with life or to accomplish all of the necessary daily tasks of living.

Often a period of autistic regression begins during or after puberty or during the transition to adulthood (late teens to early twenties). Mid-life is also a common time for autistic people to experience burnout or regression. In fact, many people (including me) list a noticeable change in their ability to cope with daily life as one of the reasons for seeking a diagnosis. However, autistic regression can happen at any age and is often preceded by a major life change or a period of increased stress.

A better analogy than regression is that of the demands of life exceeding a person’s resources.

Imagine a hot summer day in a city. Everyone turns on their fans and air conditioners to beat the afternoon heat, exceeding the ability of the power grid to supply power to all of the homes and businesses in the city. To cope, the electric company might implement a brownout–an intentional reduction of power to each building–or a series of rolling blackouts in which some locations get full power while others get none.

The autistic brain seems to work much the same way when faced with excess demands on resources. There are days or weeks or months when the demands of life are too great and our brains decide to implement a brownout or a rolling black out. Some coping skills or abilities are temporarily taken offline or run at reduced efficiency.

Many of the challenges that come with being autistic are pervasive, meaning they’re with us forever. Even if they aren’t active at all times, they still exist and may reappear when a particular coping strategy gets temporarily taken offline because the brain needs to reallocate resources for a more urgent task.

When this happens, an issue that was previously “fixed” can suddenly appear to be “broken” again.

In fact, nothing has been fixed or broken. We simply have very fluid coping strategies that need to be continuously tweaked and balanced. Because a child or adult goes through a period of having very few meltdowns, that doesn’t mean they’ll never have meltdowns again. If something in their life changes, for example the hormonal storms of puberty, they’ll need to develop new coping strategies. And until they do, they may begin having meltdowns due to the mental, emotional or sensory overload caused by the new development.

Being autistic means a lifetime of fluid adaptation. We get a handle on something, develop coping strategies, adapt and we’re good. If life changes, we many need some time to readapt. Find the new pattern. Figure out the rules. Test out strategies to see what works. In the mean time, other things may fall apart. We lose skills. We struggle to cope with things that had previously been doable under more predictable conditions. This is not regression to an earlier developmental stage, it’s a process of adapting to new challenges and it’s one that we do across a lifetime of being autistic.

Source: Autistic Regression and Fluid Adaptation | Musings of an Aspie

I’ve been thinking a lot about how my ability to mask and camouflage has really taken a nose-dive in the past years. I used to be better at this — or so I tend to think. Surely, there must be a reason — other than rank ignorance and denial — for why I’ve been under the autistic radar for so long… and why when I was younger and thought about “acting out” to get attention, my efforts were usually immediately curtailed by something inside me that says, “No – wait – don’t do that.”

I’ve had a sort of internal thermostat that’s regulated the “temperature” of my autistic tendencies, which modulated them in public.

But in the past years, I’ve noticed a sharp decline in my ability to mask and camouflage my markedly autistic behavior (in public, not privately).  And I realize I’m acting a helluva lot more autistic now, than I did in my earlier adulthood.

So, we pull inward more and more… and more and more… try to reach out more and more … more and more… and while the rest of the world is overlooking ignoring our pain and stress (because we’re so social), inside, we feel like we’re dying. Suffering, struggling… unable to escape that vicious cycle.

Source: Who has the energy? Of #autism and masking and failing to fit in – Aspie Under Your Radar

For twelve or more hours per day, for years, I had been trying to pass for neurotypical without realizing I had been doing so. I had exhausted myself in the process. I never thought much of it at the time. Until it happened again.

About four years ago, I was enjoying a fairly leisurely life of working part time from home. I had been working from home doing freelance work for a few years. I didn’t have a spouse or children. My life wasn’t particularly stressful compared to most peoples’.

I just didn’t feel like doing anything. I had no ambition at all, almost all of a sudden. I didn’t feel like talking to the few friends I usually kept in touch with. I didn’t feel like going to the places I used to like to go. I wasn’t sad or anxious. I just felt like I had shut down. It lasted for a while, and people became concerned about me.

For seven months, I didn’t leave the house. I had started ordering my groceries online. I didn’t have any reason to go anywhere. I wasn’t agoraphobic or afraid to leave my apartment. I just didn’t feel like it. My mother became concerned that I was severely depressed, but I didn’t feel depressed. I had been depressed in the past, and this didn’t feel the same. I couldn’t articulate why this was different than depression, but I knew in my heart that it was. This was something else.

I take inventories of the things I do each day and how those things affect me. It dawned on me the other day that the main reason I do this is because I don’t want to experience burnout again. As much as I try to avoid meltdowns, because my meltdowns can be scary, I also try to avoid longterm shutdowns that might cause me to lose my job (which I can’t afford to lose). I have to be able to function, and I try to maintain my functioning by not wasting too much energy on things that can be let go. Whenever I slip back into focusing too much of my energy on the wrong things, I start to feel burnt out again.

Source: Burnout | aspified

“Aspie burnout” is a colloquial term, that the clinical world doesn’t seem to acknowledge as a genuine part of the autistic spectrum, resulting from the attempts to “be normal”, fit in and keep up. Here, I think it is very useful to draw peoples’ attention to Christine Miserandino’s ‘spoon theory’: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ because when I read it, I saw such immense parallels with living with Asperger’s/autism. It can creep up on you, it can hit any time, but for sure, most Aspies will have experienced Aspie burnout by the time they hit 35.

Basically, the higher functioning you are, the more others expect of you and also, the more you push yourself. You have an invisible disability, you look normal and have no apparent physical difference. So why can’t you behave and carry on like everyone else? Sure, everyone gets tired, sure they also can get burnout from pushing themselves too hard. But the difference is this: we get it from just existing in a neurotypical world, a world that doesn’t accept our differences or make allowances for them. Mental health issues such as anxiety and depression are greater in high-functioning autistics, because of trying to fit in and finding it so difficult. Because we are acutely aware of our differences and our failings, but we are just as affected by them as lower-functioning autistics. So we kind of have the rawest deal.

When you hit burnout, you can take a long time to recover.  Even one stressful day, for someone on the spectrum can mean days or even longer, of hiding away to recover afterwards.  So imagine what impact it has if you try day after day to continue living at a level, which to others is ordinary but to you is a massive challenge.  And once you burnout, your coping capacity is diminished.  That means, even when you recover, if it happens again, it can happen quicker and take less to provoke it.

Suzanne C. Lawton refers to Aspie burnout as The Asperger Middle-Age Burnout in her book Asperger Syndrome: Natural Steps Toward a Better Life. On page 33 it says:

“She had noted this same behavior and attributed it to adrenal exhaustion from years of pumping out high levels of epinephrine from prolonged severe anxiety. Not only were these AS people dealing with their regular levels of anxiety, but they were also working extremely hard to maintain a façade of normalcy.”

Source: Aspie Burnout | Planet Autism Blog

I have been undiagnosed for most of my life so have subconsciously tried to hide or push through my autistic characteristics to fit in to the point where I physically and mentally could not do it any more, but surely we should be protecting young autistic people from the same fate?

We cannot be ‘cured’ only, by an extreme effort of will, suppressed. We should be teaching young autistic people to know their limits. It should not be celebrated that autistic people can act neurotypical, especially as we do not know the recovery time that this effort requires and do not have accommodations in the ‘established’ society to allow this healing to take place.

Source: Long-term Burnout – A Little Off the Mark

In autistic burnout we come to the end of our resources that enable us to act as if we are not autistic in order to meet the demands of the world around us. For me these demands have included things like being able to raise my children and maintain employment. I have gone through a few distinct periods of burnout and have successfully managed them by withdrawing from the world as best I could while carrying on daily commitments to children and to employment.

Then, autistic burnout began to rear up again. I thought I knew just how to navigate the burnout. At least I knew to slow down, pull back from social engagements and increase sensory regulation time and modalities. In the past these things had been helpful and allowed me to get back in sync after a few months, thus being able to venture back out into the life I wanted. Not this time.

I am thinking the combination of autistic burnout along with aging has made this episode quite different than the other times burnout has been problematic. For almost a year now, I have been experiencing somewhat of a burnout, but the difference is that I am not able to get past it like I have previously.

Over the months I’ve ramped up my sensory regulation. I am now spending about four hours per day devoted to keeping myself regulated. Some of the things I do include swimming, walking, bike riding, massage, and absolute quiet. In the past all of these things worked well. Now all of these things just sort of work. It means that no matter how much I do I never feel completely regulated.

Source: Autistic Burnout and Aging • Ollibean

I think one thing that may be different about a person on the spectrum going through burnout, is they may have learned a social facade that can be carried into periods when they are horribly stressed.

Observing others through my career, most are not able to disguise this kind of distress, and they often do not receive the same demands that the hardworking dedicated worker with hidden distress receives.

Source: KATiE MiA/Aghogday: Burnout on the Autism Spectrum

Burnout, long-term shutdown, or whatever you want to call it, happens generally when you have been doing much more than you should be doing. Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.

The danger here may be obvious: It may be the people most capable of passing for normal, the most obvious “success stories” in the eyes of non-autistic people (some of whom became so adept at passing that they were never considered autistic in the first place), who are the most likely to burn out the hardest and suddenly need to either act in very conspicuously autistic ways or die.

To the outside world, this can look as if a forty-year-old perfectly normal person suddenly starts acting like a very stereotypically autistic person, and they can believe that this is a sudden change rather than a cumulative burnout eventually resulting in a complete inability to function in any way that looks remotely normal. The outside world is not used to things like this, and the autistic person might not be either. They might look for the sudden onset of a neurological disorder, or for psychological causes, and receive inappropriate “treatments” for both of these, when really all that has happened is massive and total burnout.

This can also look much less spectacular, or be much more gradual, and it can happen in any autistic person. Sometimes, with more supports or a change in pace or environment, the skills lost come back partially or totally. Sometimes the loss in skills appears to be permanent — but even that can be somewhat deceptive, because sometimes it is simply that the person can no longer push themselves far beyond what their original capacity was in the first place.

Sometimes this kind of burnout is what leads adults to seek diagnosis and services. Unfortunately, many service systems that would otherwise support people in their own homes, cater only to people who were diagnosed in childhood, and will look at someone with a very good neurotypical-looking track record of jobs, marriages, and children with suspicion. They need to be made more aware of this possibility, because there’s a high chance that an adult in this situation could end up jobless, homeless, institutionalized, misdiagnosed, given inappropriate medical treatment, or dead.

People training autistic children to look more normal or refusing to tell their children they are autistic also need to be aware of this possibility, because this is the potential end result ten, twenty, thirty, or forty years down the road. This is one of the biggest reasons for teaching us to learn and grow as ourselves, accounting for our strengths and weaknesses rather than as counterfeit neurotypicals.

Source: Help! I Seem to be Getting More Autistic!” ARTICLE

In summary Autistic Burnout is an accumulation of years of trying to appear normal and cope as an Neurotypical (NT). The strain and drain of it suddenly becomes too much and an autistic person (me in this case) falls apart. All autistic symptoms get worse. Trying to manage all the every day normal activities are way too much. It is overwhelming and stressful for the person involved.

Source: Autism, Motherhood and Advocacy.: Autistic Burnout

My description of an inability to cope with overload might sound familiar if you read my post about meltdowns. That’s because it is similar. In fact, I’d say that burnout is a type of meltdown – one that occurs over a much longer timescale. It fits the same niche: it’s my brain’s last resort, an extreme emotional release as a result of overload. But it’s a response to a chronic energy debt, instead of an acute one.

Burnout eventually does have the intended effect – it stops the overload. Because it stops my ability to function at all, which handily includes my ability to go to school or work or do the things that were draining my energy faster than I could replenish it. Just like a meltdown forces me to get out of whatever situation was acutely overloading me.

It’s difficult to explain the concept of limited energy to people who haven’t experienced it. It’s even more difficult to explain when I actually have functioned with a full-time occupation before. If I now say I’m unable to do that, it either seems like I’m flat-out lying, or like I’m deliberately ‘disabling’ myself by limiting what I can do. But neither of those is the case. I never knew that most people don’t feel overwhelmed and overloaded all the time. I did know that most people don’t have mental health breakdowns like clockwork every few years – but I didn’t know why that happened to me and not others. Maybe most significantly, I didn’t know that energy limits existed, let alone that the idea could explain my experiences.

Now that I do know those things, I’m not lying about my past or trying to make myself worse off than I am. I’m finally being honest, to myself, about my own abilities. If that looks like I’m limited myself, it’s only because I’ve pushed myself way too hard for my whole life until now. It might look like I now have the life of a ‘more’ disabled person than I have before. But it’s actually the opposite. I am just as disabled as I always have been, but now I am taking some control over how my life works. I’m looking forward to finding out what happens.

Source: Burnout | autisticality

Her brain is telling her that people only tolerate her because she does things for them and the minute they realize she isn’t the symbol of strength and endurance they built her into, they will react with hatred and violence. That is what they always do. She is not allowed a moment of weakness. The community needs her. They need her strength. They need her to be a symbol. Can’t she do just this one more thing?

She never wants to hear again that she is strong. She doesn’t know a way out.

Well, she knows one way out.

Source: Radical Neurodivergence Speaking: The cost of indistinguishability is unreasonable.

This also essentially punishes Autistics for learning coping skills. They might get you through the lower grades, maybe even into high school or young adulthood if circumstances line up, but there will come a time when scripts and constant vigilance are not enough. There is always too much to process, too much to juggle, more and more things to do and ever increasing demands. Putting a veneer of “indistinguishability” on top of that is just setting us up for burnout. And then we are punished further if we can scrape together one last skill to seek help for burnout, help that doesn’t even exist. Failed indistinguishability should just fade away.

Source: Radical Neurodivergence Speaking: Indistinguishable From Peers-an introduction

The depression that overwhelmed me in response to all of this was spurred on by my frustration. I became overwhelmed by the realization that this is how people see me, that this is what people must think of me when I meet new people. How am I ever going to get through the interview process when all of these factors are counted against me and I’m unable to change them? How am I ever going to escape my current situation when I have to pass as neurotypical in order to get a new job? Because that’s what this really comes down to. I don’t pass well enough as neurotypical. I can force eye contact. I can stop myself from stimming. I can answer questions and speak eloquently. Yet none of that will matter because my face and voice still give away my neurodivergence. I’m still marked as weird or cold or not personable.

For autistics, interviews are like the master level passing test. It’s a time to get graded on how well you can hide and contort yourself into the image of a neurotypical. For many of us, we are destined to fail this test because no matter how hard we try we will never seem neurotypical. We can put on fancy clothes, force ourselves through painful eye contact, make mouth words happen fluidly, and avoid stimming, yet it’s not enough. There are still things that mark us as different. Things that we may not have any control over.

Source: BADD 2017: Autistic in the Workplace: Ableism and Interviews – So Much Stranger, So Much Darker, So Much Madder, So Much Better

Activist Burnout

Autistic self-advocates face activist burnout in addition to autistic burnout.

One of the major themes we see is that the impact of activist burnout compounds existing industry and workplace pressures faced by marginalized tech workers. Activism burnout is usually happening while advocates are also facing demanding schedules, hostile work environments, and a tech culture where abuse, discrimination, microaggressions, and psychological effects like imposter syndrome and stereotype threat are widespread. This echoes what Keidra Chaney wrote in Invisible: Burnout and Tech: “For marginalized workers in tech – women, people of color, queer/trans people, people with disabilities – [tech] burnout comes quicker and harder. It comes from existing and being pressured to thrive in a space where your presence is seen as an aberration, and your skills are perceived as suspect. It’s a burnout not easily solved by quick fixes, or even a new job; it’s triggered by your own life, the very body you inhabit” [Model View Culture, 2015 Quarterly #3.] The realities of a marginalized existence in tech, layered with activist burnout are profound; as one respondent noted: “It’s alienating and exhausting during the workday and after the workday;” another acknowledged that, despite the rewards of the work, “it gets tiring to have people only see me as an activist and not as a deeply technical person who is also an activist… it makes me question whether I’m really as deeply technical as I think I am. It gives my impostor syndrome yet another thing to play with.”

Of the ~30 respondents to our survey, mental health problems were one of the most heavily referenced effects of diversity in tech work, with numerous mentions of anxiety, depression and insomnia, as well as difficulty managing frustration and anger. In some cases, respondents reported that burnout triggered new mental illness symptoms; in other cases, it exacerbated, worsened or brought back pre-existing mental illnesses and related symptoms – as one activist noted: “I had been having mental health issues before already. Before my first burnout from tech activism, I was recovering from depression and eating disorders, and my recovery was going well. A short time into this burnout, my depression and eating disorders came back.”

Source: Putting a Spotlight on Diversity in Tech Burnout by The Editor | Model View Culture

Meltdowns, Shutdowns, and Alexithymia

Related to burnout are meltdowns, shutdowns, and alexithymia.

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