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

Affinity Groups, Psychological Safety, and Inclusion

Dig into project-based learning, self-directed learning, and voice and choice, and you’ll find psychological safety at the heart. Dig into privilege, and find psychological safety. Dig into creative teams, affinity groups, Employee Resource Groups (ERGs), Business Resource Groups (BRGs), and Employee Networks (ENs), and find psychological safety.

Psychological safety is necessary to building creative, collaborative teams. We’re learning that in the industries I inhabit, and I see that same learning happening in the self-directed learning space. Students and workers don’t want to leave their real lives at home. They want to design for their real lives–in psychological safety.

At Automattic, we have chat channels and blogs for and by employees belonging to various identity groups. I hang out in our neurodiversity, bluehackers, and over 40 channels, as well as our inclusion channel. I participate on our D&I blog where we talk about making our company more inclusive and compassionate, about designing for the real lives of our employees, our customers, and the full spectrum of humanity. These channels and blogs are distributed ERGs. They are affinity groups where we can share in psychological safety amongst those who understand–and influence our companies and industries.

Kids at school need the same thing. They need identity, tribe, and voice. Kids should be treated at least as well as adults on creative teams. They should have the psychological safety afforded creatives. Kids are nucleation sites of creation when we provide them psychological safety and welcoming tribes who understand their lived experience—and then get out of the way.

Communication is oxygen. Provide the atmosphere, connect tribes, let affinity groups and self-organizing teams develop, and watch students thrive and create.

Cultural competence is a business imperative that can no longer be ignored and employee resource groups must serve as the engine to make us all smarter about the future that awaits.

Source: 7 Ways to Enable Your Employee Resource Groups into a Powerful Advancement Platform

At AT&T, having “a true culture of inclusion where every voice matters” is one of the reasons the company has been so successful in its diversity and inclusion initiatives, says Cynthia Marshall, senior vice president, human resources and chief diversity officer. Over the past decade, the company has created a dozen employee resource groups (ERGs) and employee networks (ENs). ERGs are nonprofit groups that provide support, advocacy, education, mentoring, and more to groups such as women, generations, military veterans, people with disabilities, and members of the LGBT community. ENs are more informal, typically focus on business or professional development issues, and are developed with cross-functional diversity as a priority.

These employee groups provide forums for people with common interests to connect, but that’s not all. “We have people that come in and want to know more about different cultures, so they’ll join that particular ERG and expand their knowledge,” Marshall says.

They help people feel comfortable and heard, and also give other employees the opportunity to learn more about people who are different than they are. In addition, leadership involvement in these groups helps employees find role models and mentors. Marshall says that leadership involvement and behavior modeling is an essential component of an inclusive culture.

Source: How These Top Companies Are Getting Inclusion Right | Fast Company | Business + Innovation

As a result, more companies are leveraging their workforces to reach diverse customers and communities. One way they are doing this is through the innovative use of employee resource groups (ERGs)—voluntary, employee-led groups made up of individuals who join together based on common interests, backgrounds or demographic factors such as gender, race or ethnicity.

That experience motivated me to conduct my own research. I discovered that more than half of the companies with fully developed diversity strategies use their ERGs to improve the business in three ways:

  • First, they make sure employees have an opportunity to be heard, valued and engaged.
  • Second, they gain a better understanding of who their customers are.
  • Last but not least, they get insight on business performance, because smart companies understand that if they don’t grow, they won’t be around very long.

More than 70 percent of the organizations I studied relied on their ERGs to build a workforce that reflected the demographics of their customer base; the thinking was that customers would be more loyal and would feel more comfortable if they did business with people who understand them. Almost 30 percent got assistance from their employee resource groups to increase the organization’s spend with diverse suppliers.

At 90 percent of the companies I examined, ERG members helped new employees to get comfortable during the onboarding process. Studies show that the first 60 to 90 days of employment are a critical time for any new hire, and they can be particularly challenging for members of traditionally underrepresented groups. That short window of time can mean the difference between whether an employee stays for the long run or leaves the organization before the year is out. ERGs can be leveraged to acclimate employees and engender a sense of loyalty and belonging to their new company.

These groups can also be great partners for identifying gaps in an organization’s talent development process. Sixty-three percent of the companies I surveyed have an employee resource group focused on young professionals. Given how fickle Millennial employees can be when it comes to staying at a job, giving them a forum to network and grow is a great way to reduce turnover rates.

Many companies also successfully use their ERGs to improve the organization’s leadership development process, to drive results, to forge relationships, and to ensure alignment between their business and diversity strategies.

The data clearly suggest that employee resource groups are not only good for business—they are essential!

Source: Are Employee Resource Groups Good for Business?

Increasingly, the roles and responsibilities of employee resource groups (ERGs) in organizations must transition from social networks to think-tank type groups that directly impact the business.  The changing face of America’s workforce demands it.  It is an opportunity that will allow the voices of employees to be heard and the power of diverse thinking to influence the new ground-rules that will define the workplace of the future; its workforce, clients and consumers.    Employee resource groups that serve only as social networks will do little to strengthen the voices and identities of those who must represent the leadership of America’s future.

For ERGs to transition into think-tank type groups requires consistent participation, with active members that remain engaged to advance its mission to impact the business.  In many companies, ERGs are being forced to redefine their “engagement model” in order to recruit and retain long-term volunteer participation that is purposeful and that rewards employees for their efforts – by helping them advance their careers, develop their leadership skills, and gain greater visibility with and access to senior executives so that they can get discovered.

ERGs must become smarter about defining what they are ultimately trying to accomplish for themselves and the business, and then create a metric to enforce accountability to assure their objectives are being measured and attained.   ERGs are only as effective as the overall commitment of their members and the incremental benefits they receive for their participation.   ERGs must view themselves as a formidable advancement platform for talent and business development activity.  They must be focused on defining a value proposition that is more strategically aligned to seeing and seizing business innovation and growth opportunities that are directly related to one’s cultural, gender, sexual-orientation and societal identity.  ERGs must become more deliberate in how to enable unique thinking into different points of view and perspectives that translate into solutions to meet corporate growth objectives and initiatives across channels, brands and business units.

Cultural competence is a business imperative that can no longer be ignored and employee resource groups must serve as the engine to make us all smarter about the future that awaits.

Source: 7 Ways to Enable Your Employee Resource Groups into a Powerful Advancement Platform

Many of our readers here know that leading an Employee Resource Group also means stretching beyond what’s comfortable, on multiple, frequent levels.

But I have seen firsthand the stories of people identifying as LGBT or working in support of LGBT equality at work – who have emerged in their companies as stronger leaders as a result of that work. I have seen this occur over and over; it has in fact happened to me, and transformed my leadership skills and style. I have come to embrace the challenges I’ve faced – both real and perceived – as a gift which shaped the uniqueness with which I show up in the world. Some of my inspiring colleagues took their own quantum leap by coming out in the workplace, while others began their transformation or connected the dots in one of our programs. As a result, many managers of these individuals are seeing their leadership show up differently. Our hope is more and more leaders are able to align their diversity story with their leadership journey. This would go a long way towards building more inclusive workplaces.

In our keynotes and workshops, we provide tools, techniques, and a trusting environment in which LGBTA employees can find their individual voice in ERGs at work and, as they do, in their role as leaders in those ERGs and in the company at large.

ERGs are workplace teams, and leading them means being able to feel confident, the way Scott did, or communicate the way Benjamin did. Openness about one’s diversity story empowers others, provides role models and is a universal leveler in which the common denominator is not only one’s humanity but also one’s strength and ability to guide others and act in an informed, constructive way.

Source: Aligning With Our Own Diversity Story Makes Us Better Leaders | Diversity Best Practices

Tolanda Tolbert, PhD, Director of the Inclusive Leadership Initiative of the Catalyst Group, responded with a fascinating idea. She points to Employee Resource Groups, (ERGs) the voluntary, employee-led organizations that typically work to smooth the way for their members, but which have been increasingly tackling the thornier issues of race, inclusion and justice in their companies and communities.

“We would suggest that the work that most ERGs do could be leveraged to create a space where the targeted communities and the authorities could meet and have a dialog,” she says, referring to the police and aggrieved activists in Charlotte. “We could also see ERGs functioning as advisors to either side of this conversation-working as a bridge to communication,” she says.

Tolbert, who studies and consults with ERGs as part of her job, thinks they can grow into a management force for change. “For example, imagine that situation with Arizona passing discriminatory laws,” she says. “We could see an ERG telling their leadership not to have their annual conference in a location, or to stop sponsorship of an event.”

Source: Charlotte Violence: How Employees Can Make A Difference | Fortune.com

Our employees are a bridge to our customers. So it’s important that they feel encouraged to contribute their unique insight and skills to help solve some of the most complex technology challenges. We support seven major employee groups and over 40 employee networks that help us build a supportive community across Microsoft.

Source: Global Diversity and Inclusion Home

Enrichment occurs when our workplace participation leaves us energized instead of exhausted, enhances our personal identity rather than diminishes it, and provides us with skills and tools that will help us not only survive but thrive in our lives outside of work.

So how can organizations help support work-life enrichment for their employees? I reflect on that question often as I work with the organizations in our Boston College Workforce Roundtable and consider how they can enhance their employees’ work experience. In a presentation at our recent Roundtable Spring Meeting, we heard from Jennifer Brown, Founder and CEO of Jennifer Brown Consulting, a thought leader on Employee Resource Groups (ERGs). She discussed the progression of these employee networks from their origins as “affinity groups” for diverse employees, helping people connect with like others. She then highlighted the on-going transformation of these networks to Business Resource Groups (BRGs). BRGs are the new trend in employee networks, and are highly connected to organizational strategy and defined business goals. ERGs or BRGs can assist with recruiting new employees of diverse backgrounds, developing and marketing products and services to an increasingly diverse marketplace, and providing opportunities for professional growth and advancement for participants.

The evolution of these employee networks offer meaningful opportunities for employees to network, grow, learn and be energized by their experiences. In short, they can promote work-life enrichment.

While the benefits of participating in an ERG transcend the relationships formed, the message that resonated with me most was employers affording employees an opportunity to connect with others, not necessarily of similar backgrounds, but with similar interests. I realized how important making those personal and professional connections has been to me and my own job satisfaction, and recalled the research from Gallup and others on the importance of having “friends” and close colleagues at work.

Participating in an ERG can be one way to enhance the employee experience. By connecting with others, developing relationships and leadership skills, and contributing back to the community, employees may be energized and feel a greater sense of alliance with the organization. Beyond their original intent to catalyze organizational diversity, today ERGs have the potential to foster work-life enrichment and therefore become a worthwhile investment for the company as a whole.

Source: Employee Resource Groups and Work-Life Enrichment | Jennifer Sabatini Fraone | Pulse | LinkedIn

Employee Resource Groups (ERGs) have existed in organizations for more than 40 years. In the past 5 years, however, ERGs have evolved from networking groups that promote diversity and inclusion to become key contributors to business strategy and operations. In our current global economy, multicultural competency and understanding is critical for business success. ERGs can utilize employee knowledge and expertise for talent management (recruitment/retention of diverse employees); to create culturally sensitive product development, marketing, and customer service as well as supplier diversity; and for building an inclusive and engaged workforce. ERGs are known by various names including affinity groups, employee networks and diversity councils. DiversityInc found that organizations often use the word “resource” to reflect the benefits of ERGs to the business mission, approach and outcomes. Welbourne, Rolf & Schlachter (2015) suggest that the term “business resource group” will be used more in the future to emphasize the benefits of ERGs to both employees and organizations.

The ERGs with the most traction and interest tend to be those ERGs that are closely linked to business strategy. When employees perceive their efforts to as directly impacting business outcomes, they are more likely to get involved (Mercer, 2011).

Employee Resource Groups have evolved from employee support networks created to achieve diversity and inclusion to a strategic resources that enhances business outcomes in the following areas:

  1. Involve employees in recruitment and talent management efforts
  2. Offer leadership development and mentoring opportunities
  3. Capitalize on the knowledge of diverse employees to create consumer sensitive branding and product development
  4. Create an engaged and inclusive work environment
  5. Promote your organization as an employer of choice and community partner

Source: Employee Resource Groups: A Strategic Business Resource for Today’s Workplace

The Gift: LD/ADHD Reframed

This talk by Jonathan Mooney is social model music. I include it in my primer on the social model for minds and bodies. Mooney provides necessary insight into neurodivergent learners. Every minute is worth your time. I’ve pulled quotes from the talk below, as well as a handful of quotes from the introduction to his book Learning Outside The Lines: Two Ivy League Students With Learning Disabilities And ADHD Give You The Tools For Academic Success and Educational Revolution.

Mooney’s perspective offers many takeaways. Two critical ones for me are these rules of thumb.

  • agent > patient
  • identity > diagnosis

Challenge our definition of where disability lies.

We’ve built an entire edifice of intervention that’s about fixing people.

It’s not their minds or bodies that truly disable them. It’s how environment reacts to those differences. That’s where disability lies. Folks don’t have disability, they experience disability in environments that aren’t accessible and inclusive.

We should spend more time talking about how we change the environment that surrounds people and not the people themselves.

I did not overcome dyslexia. I overcame dysteachia. I overcame environments that weren’t built for my brain.

It’s that narrow definition of intelligence, behavior, and motivation that is really my disability. Not dyslexia, not ADHD.

In many learning environments we think good kids sit still. The good kid is the compliant kid.

Young folks like me are given the identity of being bad.

“What is your problem?” If I had a nickel for every time I heard that word in my life.

I was given this identity that I was a problem because of a norm in the environment that good kids sit still.

Difficult children make interesting adults.

We’ve built learning environments based on the myth that appropriate and valuable human behavior is about compliance.

We have conflated reading with intelligence.

We’ve left so many brains out.

We shouldn’t be asking ourselves, “how smart am I?” We should be asking, “how am I smart?”

I had overcome not ADHD, but I had overcome the feeling of being the defective person morally because I didn’t comply to the myth that good kids are compliant.

Intrinsic motivators are drivers like autonomy, mastery, and purpose.

We’ve built most of our learning environments with sticks and carrots.

We’ve negated the power of choice and the power of letting folks craft an education that is grounded in their aspirations, their vision for themselves.

How do we build learning environments that embrace intrinsic motivation: autonomy, mastery, and purpose?

An essential component of my journey was an identity transformation from being a patient to being an agent.

You don’t need somebody to fix you. You need somebody to fight for you, and with you, because what’s happening to you is an injustice.

It ain’t right for somebody to be marginalized for a difference.

I need to cultivate a rights based paradigm, a diversity framework, and I need to become an advocate against what is a form of discrimination and marginalization. That’s an important transformation in agency.

You gotta fight against this, you gotta be an advocate, you gotta have a voice in your education.

Consistently cultivate the language of high expectations.

Y’all know the file, right? This has been the thing that had been following me since I started special education. Those things are thick and deep. KGB got nothing on special ed.

That’s agency. That’s somebody who refuses to negate somebody’s humanity because of a label.

We spend so much time talking about the problem, we lose the person.

We spend so much time captured in this language of deficit that we lower expectations.

We’ve built this whole infrastructure about fixing folks, about turning people into passive recipients of treatment and service, of turning people into patients. But being a patient is the most disempowered place a human being can be.

We need to cultivate a sense of agency in people which is the opposite of patient hood.

The most meaningful interventions, the most meaningful people in my life were people who cultivated a sense of agency.

Real intellectuals, they don’t care how you get there, they just want you to get there.

He was gonna hold me to the highest expectations, but he was gonna give me multiple ways to meet those expectations. And that is what an agency education is all about.

How well I know something is more important than how fast I know something. We are not trying to educate a generation of Jeopardy contestants.

Accommodate, and change the environment.

Multiple ways to reach those expectations with a flexibility in the classroom that was inclusive of learning diversity.

Switch from a deficit paradigm to an asset-based strength paradigm.

When all we do is fix people, the message we give to them is that they are broken. Nobody lives a meaningful life feeling broken.

It’s essential that we cultivate that capability framework, that asset based framework.

The moment that I could switch from what’s wrong with me to what’s right with me was a significant part of my journey.

Most of my education was all about what I couldn’t do.

We spent thousands dollars, thousands of hours on trying to fix one trait, frankly, perhaps the most irrelevant trait in the world in the 21st century, and that is spelling. God bless spellchecker.

The energy gone into fixing spelling, to worrying about spelling, it’s staggering.

All week we invested time, money, and relationship capital on fixing that irrelevant trait.

We’re not doing the spelling test today. We’re ditching school and going to the zoo.

The reporter asked me, “Jonathan, give my an inspiring message about how you got to Brown University for young people.” And I said, “ditch school.” Because what we and my mom did every Friday was we spent time getting good at something. We spent time developing strength. She literally called it the “get good at something day.” We spent time being interested in the world. We spent time figuring out where my capacities were, talking about how to make my way in the world with my capacities, not my deficits, but my assets. That was a radical shift in my life.

There is research is piling up every day that shows that school, including higher education, is trying to create generalists for a world of specialists.

More than ever the world rewards specialist knowledge.

School is the only place where we ask human beings to be good at all things.

We need to challenge how we’re forcing everyone to be the same in our educational models with this ideal notion of a generalist approach to being successful. The most successful human beings aren’t good at everything, they’re good at one or two things and they scale those strengths. How do they mitigate those weaknesses? They mitigate those weaknesses the way we all do, with teams, technology, and support.

I married my spellchecker. It’s called strategic mating.

We build supportive networks, we use technology, and we build a life not about what’s wrong with us, we build a life around what’s right with us.

We have built learning environments, our culture, our communities, around the myth of normal and average. That myth of normal and average has bombarded all people with a pervasive imperative that to be okay as a human being, to be acceptable as a human, you have to strive for this mythical norm, this mythical average, which by definition does not exist.

We didn’t have the word normal in the English language until the 1860s. Normal is a product linguistically of the industrial revolution , of standardizing production, of moving in a place that’s forcing people to fit that standardized mold. Normal is a statistical concept, not a fact in the world.

Challenging that myth of normal is a philosophical imperative because we are doubling down normal.

We have a medical community that’s found a sickness for every single human difference. DSM keeps growing every single year with new ways to be defective, with new ways to be lessened.

The myth of normal is what’s broken, and the identity that, if you don’t fit it, that you are less than, that’s what’s broken. We need to reframe what we problematize, not bodies, not difference, but this pervasive imperative to be normal.

All progress, all evolution, is driven by deviations from the norms.

All evolution and progress is driven by mutations and deviations. If we lose that, if we eradicate that, we have lost our strength as a community, as a society.

Disability industrial complex is all about what people can’t do. We spend most of our time trying to fix what they can’t do. When all we do is fix people the message we give to them is that they are broken.

We have created a system that has you submit yourself, or your child, to patient hood to access the right to learn differently. The right to learn differently should be a universal human right that’s not mediated by a diagnosis.

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

Learning Outside the Lines

For centuries, the word stupid, combined with various intensifiers like bad, lazy, willful, or weak has been used to create a moral “diagnosis.” That moral diagnosis has ruined millions of lives.

Our life struggles had more to do with freeing ourselves from the institution of education than transcending our own personal weakness.

It is a loss and a crime when creativity, alternative learning skills, and an individualized education take a back seat to rote memorization, standardized testing, and the misconception that all people learn the same way.

Education is one of the most beautiful and liberating things we can pursue in our lives, but too often it is approached as a restrictive, punitive, linear, and moralistic act.

Throughout our lives, we had looked to the idea of succeeding in school to define our worth and our intelligence. In childhood, we were told we were defective goods, and to be better we had to be other than what we were.

Ultimately our diagnoses and the subsequent attempts at intervention allowed people to blame us, two powerless kids, for our failure instead of turning a critical eye toward the environment. It took us fifteen years of personal and academic struggle to stop blaming ourselves, to stop believing that we are inherently defective like “they” thought, and to come to realize how profound an effect the environment had on our inability to succeed. Only as time went on did simple interventions like the ability to get up out of our seats, the use of a spell checker, and progressive ideas like project-based learning and other modifications to the learning environment allow the pathology to slip into irrelevance and enable us to be successful. Our hard wiring is a simple cognitive difference. We all have them. But an oppressive educational environment that blames children for their failures caused us to grow up with the stigma of pathology.

Behavior becomes a social indicator of morality, marking which kids are good kids and which kids are bad, and the highest value is one of conformity, passivity, and obedience.

The underlying notion is that all kids develop at the same time in a linear, sequential manner, and if some kids cannot read early, they are not intelligent. This environment gave us an identity at a time when our personality was malleable, an identity that revolved around the teacher, the authority figure in the room. We did not question the rules and the identity handed to us. We were taught that sitting still and getting gold stars on our math homework were more important than art and ideas, and much more important than what kind of people we were and how we treated other kids.

Mooney, Jonathan; Cole, David (2014-07-01). Learning Outside The Lines: Two Ivy League Students With Learning Disabilities And Adhd Give You The Tools F. Touchstone. Kindle Edition.

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

Diversity & Inclusion Recap #3

A recap of my past week of continuous D&I learning—with selections discovered through friends and peers in tech, education, neurodiversity, LGBTQ, and disability communities. Thanks for sharing.

In this one:

  • All that we share
  • Sexist things teachers says
  • Coding pipelines
  • Acceptance > Awareness
  • Women in executive roles
  • Disability representation in stock photography, invisible disability
  • The Bell Curve of Despair
  • Making it through
  • Tolerance and the Paradox of Free Speech
  • Born to learn, collaborative learning communities
  • Educate for massive software driven change
  • Diversity Hiring
  • Rethinking Learning to Read
  • Ableist Job Requirements
  • Autism Diagnosis Rates, Anti-vaxx Pseudoscience
  • Teen Vogue
  • Context Matters, Identity First
  • Diversity and Unpaid Internships
  • Tech Soul Searching and Solidarity
  • Mindfulness and bikeshedding the deficit model
  • LambdaConf and Codes of Conduct
  • Ex-evangelical Perspective
  • White male views on diversity
  • Inspiration Porn
  • Hackathon for reconciliation
  • Responsible Communication Style Guide
  • Community Event Planning
  • Language and structural racism
  • #ActuallyAutistic perspective on High Functioning and Low Functioning labels

All that we share

Compassion and inclusion.

Sexist things teachers says

Coding pipelines

Credentialist systems with their pipeline problems and meritocracy myths are not the only ways into tech. There are a diversity of learning paths. Degrees are not always required. Teams are often more STEAM than STEM. My path included a CS degree, but times, and teams, have changed. We acknowledge the meritocracy myth and pipeline problems and recognize that teams and companies built solely from deficit model credentialism are missing true diversity and inclusion.

Politicians routinely bemoan the loss of good blue-collar jobs. Work like that is correctly seen as a pillar of civil middle-class society. And it may yet be again. What if the next big blue-collar job category is already here-and it’s programming? What if we regarded code not as a high-stakes, sexy affair, but the equivalent of skilled work at a Chrysler plant?

Among other things, it would change training for programming jobs-and who gets encouraged to pursue them. As my friend Anil Dash, a technology thinker and entrepreneur, notes, teachers and businesses would spend less time urging kids to do expensive four-year computer-­science degrees and instead introduce more code at the vocational level in high school. You could learn how to do it at a community college; midcareer folks would attend intense months-long programs like Dev Bootcamp. There’d be less focus on the wunderkinds and more on the proletariat.

Source: The Next Big Blue-Collar Job Is Coding | WIRED

Acceptance > Awareness

One of my rules of thumb for human systems is acceptance > awareness. Awareness focuses on deficits. Acceptance focuses on inclusion.

Source: Acceptance > Awareness – Ryan Boren

Women in executive roles

We recently conducted a study of more than 10,000 senior executives who were competing for top management jobs in the UK. We found that women were indeed less likely than men to apply for these jobs, but here’s the interesting part: We found that women were much less likely to apply for a job if they had been rejected for a similar job in the past. Of course, men were also less likely to apply if they had been rejected, but the effect was much stronger for women – more than 1.5 times as strong.

The implications here are not trivial, because rejection is a routine part of corporate life. Employees regularly get rejected for promotions, job transfers, important project assignments, and so on. To reach the top of the organization, people need to keep playing the game, over and over again, even after repeated disappointments. So even small differences between how men and women respond to rejection could lead to big differences over time.

To investigate this effect further, we interviewed top women executives about their experiences in recruitment processes and found a common complaint: dissatisfaction and frustration with how those processes were managed. For example, the CFO of a biotech company recalled that she had been considered for a CEO position. After failing to get the job after many rounds of interviews, she had been left with the impression that she was asked to apply merely because she was female and the firm needed a woman on the shortlist – not because the company was serious about hiring her. This may or may not have been true, but that’s the impression she had, and as a result she said she would be unlikely to put herself through a similar process in the future.

Women’s decisions to remove themselves from competition after having been rejected is driven partly by their experience of being a negatively stereotyped minority in the executive labor market. Think about it – women executives were coming to the table with past experiences of being in the minority, and they may have been in situations in which they felt like outsiders or felt that their leadership ability wasn’t recognized. Because the majority of men had generally not been subject to these same situations, men were less likely to take rejection as a signal that they did not belong in the corner offices, and therefore such disappointments had less of a negative impact on their willingness to apply again.

And, by the way, this same underlying mechanism should apply to any underrepresented group. In other words, what we found is not that there’s something unique about women; it’s that women are a minority, and minorities are often not perceived as legitimate leaders. Indeed, we would expect that men would behave in the same way in contexts where they were seen as illegitimate or outsiders.

Source: Women Are Less Likely to Apply for Executive Roles If They’ve Been Rejected Before

Disability representation in stock photography, invisible disability

On disability tropes in stock photography.

1. Use a (manual) wheelchair.

How else will anyone know? Other mobility aids don’t really count – do you see them on parking spaces and bathroom signs? Yeah, didn’t think so. If you want people to believe that you’re disabled, you have to prove it to them in a familiar, comfortable way. Then they’ll know how much misguided guilt to project onto you, what to assume about your self-esteem, which questions are okay to ask (spoiler: doesn’t matter, they’ll ask anyway), and exactly how often to ponder the intricacies of your sex life.

Invisible disabilities are useless in stock photos and particularly cruel to your audience. Could you imagine if they knew that disabled people are everywhere, all the time, even if they don’t realize it? And that supporting us involves more than installing ramps or calling Trump out on being a big bad meanie? The world would cease to turn! Nondisabled people can’t be bothered with that sort of critical thinking. So keep it simple and stick with the tried and true. There are a couple of exceptions — namely, white canes for blind folks and prosthetics for athletes or veterans — but otherwise, get yourself a chair that looks like it came straight out of a hospital in 1972.

Source: How To Be Disabled, According to Stock Photography | Autostraddle

The Bell Curve of Despair

More than 2,200 young people between the ages of 16 and 25 were surveyed by the Prince’s Trust charity. Nearly half (45 per cent) said that they did not believe in themselves when they were at school. And 48 per cent said that they experienced problems during their school years that prevented them from concentrating on their academic work.

Of these, 46 per cent did not talk to anyone about their problems. Largely, this was because they did not want other people to know that they were struggling. And more than half (58 per cent) did not think that asking for help would solve the problem.

The survey is the eighth such study conducted by the Prince’s Trust. This year, young people’s levels of happiness and confidence were at their lowest level since the first survey was commissioned.

Source: Young people are so troubled they can’t focus at school | News

Making it through

With ableist, eugenicist, white supremacist authoritarianism on the rise, the history presented in NeuroTribes is all too relevant.

Tolerance and the Paradox of Free Speech

Born to learn, collaborative learning communities

This piece fits my communication is oxygen, psychological safety, structural ideology, hacker ethos, social model for minds and bodies, and collaboration narratives.

Research has confirmed what most parents of young children can already see for themselves – that children are born to learn, rather than to be taught, as Abbott puts it. Driven by an inborn desire to make sense of the world and find purpose in life, they naturally observe, deconstruct, piece together and create their own knowledge. They learn best when this intrinsic motivation is harnessed in what he calls “highly challenging but low-threat environments.”

The bottom line, Abbott notes, is that the current system excels at preparing children to be dependent “customers,” so if we hope to instead create a world of responsible, community-minded adults, we need to overhaul the educational paradigm. That means replacing the metaphor – the concept of the world and its inhabitants as machine-like entities – that has shaped the education system, as well as many other aspects of our culture. Because humans are not machines, a reliance on this metaphor has created a large disconnect between people’s actual lives and their inherited expectations and predispositions, which lies at the root of many inter-related modern challenges, says Abbott.

Clues to a more suitable paradigm can be found in the metaphors that characterize the dynamic, networked Information Age. These share some key characteristics with the pre-industrial past, when people learned in the community, from a variety of adults with whom they built relationships. Learning continued over the course of a lifetime filled with meaningful work (in contrast to today’s high unemployment rates and low workplace engagement levels), and success was judged by whether a person carried out his or her fair share of responsibilities within the community.

“It is essential to view learning as a total community responsibility,” he says, and to expect no short cuts. Children need to be integrated, fully contributing members of the broader community, so they can feel useful and valued. (It is not just the children who need this, he adds; healthy communities also need children.)

Source: To Advance Education, We Must First Reimagine Society | MindShift | KQED News

Educate for massive software driven change

At a time when the Trump administration is promising to make America great again by restoring old-school manufacturing jobs, AI researchers aren’t taking him too seriously. They know that these jobs are never coming back, thanks in no small part to their own research, which will eliminate so many other kinds of jobs in the years to come, as well. At Asilomar, they looked at the real US economy, the real reasons for the “hollowing out” of the middle class. The problem isn’t immigration-far from it. The problem isn’t offshoring or taxes or regulation. It’s technology.

Source: The AI Threat Isn’t Skynet. It’s the End of the Middle Class | WIRED

Diversity Hiring

It’s important not to frame diversity as a charitable endeavor, marketing, or as loss leader. Diversity hiring offers enormous returns to companies looking for talent in fields in which competition is now global. This means that companies must look for lessons from areas in the private sector that have realized human capital is more important than financial capital.

This translates into a several powerful lessons for diversity hiring: companies need to view recruiting as more than just gathering a pool of applicants when they have a job opening. Instead, companies need to cultivate talent and gather information on future talent over many months and years. This means active mentoring programs that start early and connect company leadership to college students and young professionals.

In order to develop diverse human capital, companies need to think beyond merely “hiring the best.” They need to incubate talent with advice. Mentoring need not be touchy-feely. In fact, mentoring is a deadly serious matter if companies want to build their human capital and retain their best employees. Recruiting is expensive. When employees don’t succeed or leave, companies suffer. Moreover, diversity hiring and building inclusive workplaces cannot be separate. They need to be integrated projects that challenge employees and companies to reach their potential.

The race for talent is no different; it is rerun every year if not every month. The old saying still holds true: a company’s greatest assets walk out the front door every night. To make sure the best assets walk back in in the morning, companies need to continually improve and reinvent their diversity and inclusiveness initiatives. Learning and nimbleness must become part of human resources’ DNA.

Source: How Diversity Hiring is Like Startup Investing – Medium

Rethinking Learning to Read

This article jibes with our experience homeschooling our neurodivergent kids. Following this advice to teachers and parents of nuerodivergent kids will put you on the path to natural, authentic reading based on social model compassion and structural awareness instead of the deficit model treadmill.

Our older daughter has recently learned to read. Although I feel that this has been a gradual process which has taken place over a period of many years it seems to have come together coherently over the last 6 months to a year, largely motivated by her desire to understand what was happening on Minecraft chat and communicate with other players online. My daughter was very excited about this and felt empowered having learned to read of her own volition and in a way that suited her.

The participating families adopted a range of approaches to learning and home education: some families were more structured in their approaches, while other families favoured autonomous and radical unschooling approaches and others an eclectic mix. Parents reported that their children were learning to read in a diversity of ways and accounts differed not only between families but also within families; no two children learned in exactly the same way. What was apparent was that each child followed a unique learning trajectory, which could be quite different from that found in normative studies.

In the book Pattison draws an important distinction between the metaphors of acquisition and participation first identified by Sfard (1998). The metaphor of acquisition involves thinking about learning to read as a cognitive skill that can be acquired sequentially while participation focuses on the child’s role as an important member of a social and relational network and an active participant in a wider literate community. To me this latter metaphor is an exciting and useful way of thinking which may be more able to account for the diversity of accounts of learning to read that were found in the sample. It also interests me as a clinical psychologist as it opens up conversations about the emotional, relational and psychological processes involved in learning to read and reflects on aspects of identity involved in becoming a reader and being part of a wider community. In my experience accounts based on the individual acquisition of cognitive skills do not tend to focus on these issues and the many diverse meanings and implications learning to read has for the child and the social processes involved.

As an adult I had been influenced by John Holt’s (1991; 1995) observations of children learning to read without needing to be ‘taught’. Holt explained how children could be in fact be damaged by being coerced and pressured to read in a school system which was unable to accommodate and respond to the child’s individual preferences and needs. These ideas along with unschooling philosophy that I had accessed mainly via online forums and sites such as sandradodd.com and Always Learning led me to trust that our children would learn to read in their own time with our support in ways that suited them. Peter Gray has also written some interesting accounts of unschoolers learning to read.

Families shared: “No phonics, no flash cards, no traditional teaching methods were used in our home – for reading or anything else” and “Phonics doesn’t suit every child – as a very strong visual learner my daughter finds the individual sounds in words meaningless … she hears words as a single sound.”

Some families drew on whole word learning approaches, some an eclectic mix, while others acknowledged the limitations of using methods and a number preferred to use no methods at all because this is what they felt was the best approach for their particular child and that they would learn to read naturally by engaging in everyday life. “Living a life style of literacy”; “Living life in a world where words are everywhere” and “Given time and exposure children will learn to read and will enjoy it.”

Away from phonics families were actively and pragmatically choosing methods and approaches with the best fit for the child and they were using those methods in ways that were facilitative of their relationships, the child’s learning and their emotional well being. In taking this open and flexible approach families were placing the child at the centre of the learning experience. For example, a parent said “Go with what works for that particular child” and another “The method is not important; the important [thing] is that the child likes it.

One of the assumptions to be questioned in ‘Rethinking Learning to Read’ is the normative research and educational based accounts which structure our ideas about the age at which we expect children to read. The ages at which children learned to read in the sample ranged between 18 months and 16 years. The ages varied widely not only between families but also within them. The home educating families reported that their children were able to learn in a variety of ways, for example, through play, auditory, practical activities, TV and video, computers and digital media generally learning by participating in a wide range of activities at home and in their communities. Children were free to pursue their interests and passions in ways that were meaningful to them and were not restricted if they were not yet reading. Parents also often read to children and supported them in their activities which may have required reading or writing (if the children desired this). Learning to read at an older age did not appear to have any negative associations, children often learning to read quickly and effortlessly when they were ready. In fact a number of parents described their children benefiting from learning to read according to their own schedule and not pressuring them to learn according the parents own expectations.

Source: ‘Rethinking Learning to Read’ by Dr. Harriet Pattison – Book Review – Rethinking Parenting

Read the whole thing. Highly recommended.

Ableist Job Requirements

Autism Diagnosis Rates, Anti-vaxx Pseudoscience

Teen Vogue

Teen Vogue is doing great intersectional and structurally aware journalism.

Teen Vogue deserves credit not just for Duca’s op-ed but for the entirety of its political coverage, which has provided sharp, impassioned coverage of everything from gun control to Black Lives Matter in 2016. Much of this is due to Teen Vogue‘s editor, Elaine Welteroth, who graduated to the position last May, and Phil Picardi, the magazine’s digital editorial director. Just two years ago, the site’s most-read articles were comprised almost entirely of light celebrity and beauty news (an expose of Taylor Swift’s secret past as an Abercrombie & Fitch model performed particularly well). Today, a quick scan of its Twitter feed reveals pieces about the Dylann Roof verdict and Ohio’s recent abortion ban interspersed with galleries of “2016’s Cutest Celebrity Couples” and a review of Miranda Kerr’s skincare routine. (I clicked; my passion for gender equality is matched only by my abiding interest in dry oils.)

Under the incoming Trump administration, it’s crucial that we banish the idea that there is a boundary between “women’s journalism” and “serious journalism” once and for all. When the president of the United States has admitted to committing sexual assault on tape; when an architect of GamerGate sits in the White House; when states start passing “heartbeat bills” designed to effectively overturn Roe v. Wade, those aren’t “women’s issues”-they’re national news. A failure to treat them as such will leave us unprepared to adequately oppose Trump and Trumpism.

Source: The true story of how Teen Vogue got mad, got woke, and began terrifying men like Donald Trump — Quartz

Context Matters, Identity First

Something we #ActuallyAutistic say over and over.

Our data demonstrate that both autistic and non-autistic people’s degree of autistic traits — their difficulty interacting and communicating with other people — are contextually specific.

autistic participants report having fewer autistic traits (i.e., less difficulty interacting and communicating) when the items are contextualized as “with autistic persons” than when the items are contextualized as “with non-autistic persons.”

Context matters not only for accurately assessing autistic traits but also for designing environments that enable autistic persons to optimally interact and communicate.

*We purposely use identity-first terms (e.g., “autistic traits” and “autistic participants”) rather than person-first terms (“autism-related traits” and “participants with autism”) because identify-first language is recommended by psychologists, preferred by autistic people, and less prone to stigma.

Source: Researcher ‘First Person’: Why Context Matters When Assessing Autistic Traits | Your Say

Diversity and Unpaid Internships

For more on unpaid internships and the post-employment economy, see Sarah Kendzior’s The View from Flyover Country.

The reality is that, in the “jobless recovery”, nearly every sector of the economy has been decimated. Companies have turned permanent jobs into contingency labor, and entry-level positions into unpaid internships. Changing your major will not change a broken economy.

It is not skills or majors that are being devalued. It is people.

To which the 30-something, having spent their adult life in an economy of stagnant wages and eroding opportunities, takes the 20-something aside, and explains that this is a maxim they, too, were told, but from which they never benefitted. They tell the 20-something what they already know: It is hard to plan for what is already gone. We live in the tunnel at the end of the light.

Unpaid internships lock out millions of talented young people based on class alone. They send the message that work is not labor to be compensated with a living wage, but an act of charity to the powerful, who reward the unpaid worker with “exposure” and “experience”. The promotion of unpaid labor has already eroded opportunity – and quality – in fields like journalism and politics. A false meritocracy breeds mediocrity.

Post-recession America runs on a contingency economy based on prestige and privation. The great commonality is that few are paid enough to live instead of simply survive.

Mistaking wealth for virtue is a cruelty of our time. By treating poverty as inevitable for parts of the population, and giving impoverished workers no means to rise out of it, America deprives not only them but society as a whole. Talented and hard-working people are denied the ability to contribute, and society is denied the benefits of their gifts. Poverty is not a character flaw. Poverty is not emblematic of intelligence. Poverty is lost potential, unheard contributions, silenced voices.

Millennials are chastised for leaning on elders, but the new rules of the economy demand it. Unpaid internships are often prerequisites to full-time jobs, and the ability to take them is based on money, not merit. Young adults who live off wealthy parents are the lucky few. They can envision a future because they can envision its purchase. Almost everyone else is locked out of the game.

Source: The View From Flyover Country

Tech Soul Searching and Solidarity

Rank and file tech workers are doing a lot of soul searching and pushing their companies to be more ethical, compassionate, and protective of our own.

Mindfulness and bikeshedding the deficit model

Mindfulness joins grit and growth mindset in the endless parade of deficit model bikeshedding. Instead, get structural, and directly confront injustice.

LambdaConf and Codes of Conduct

We must be wary of the spread of codes of conduct such LambdaConf’s. This is not a truly inclusive contributor covenant.

Ex-evangelical Perspective

Christoper Stroop’s blog and Twitter timelineare great resources on ex-evangelical perspective.

Among the reasons I decided to start blogging are not just a desire to raise awareness about the dangers of illiberal religion to democratic politics and an impulse to express my own ex-Evangelical voice, but also a desire to help build up the ex-Evangelical and broader ex-fundamentalist community. Many ex-Evangelicals end up feeling isolated, and the issues that result from leaving fundamentalism can be difficult to discuss. Outsiders often find the experiences of those who grew up in the subculture we did difficult to believe; those still in that subculture are often defensive.

Source: Ex-Evangelical Conversations: An Interview with Grete Howland – Christopher Stroop

White male views on diversity

Last November, LinkedIn published a study that showed just how much white men care about diversity in tech. Spoiler: Very little when they are allowed to answer questions about diversity without using their name.

Less than 5% of white men surveyed said they considered a lack of diversity a top problem. Three-out-of-four respondents were unaware of any initiatives to make their companies or portfolios more diverse. And 40% of male respondents were sick of the media going on and on about it.

Source: Pando: White men to women and minorities in tech: We just DGAF

A sad showing from my fellow white men that suggests structural ignorance, lack of systems thinking, and a failure of empathy.

Inspiration Porn

Hackathon for reconciliation

Coding and education must directly confront social injustice and structural inequality. Glad to see this.

UbuntuHack is a hackathon between communities in conflict, gathering youth and police. We also invite activists, tech companies, churches, and community organizations to take part in identifying solutions that will create more safe spaces for everyone.

There have been hackathons that included police and youth, but UbuntuHack is an app building, rapid prototype testing, design thinking conversation BETWEEN youth, police and the community. This hackathon creates space for EVERYONE. Engineers, developers, artists, entrepreneurs, activists, and more importantly – you! Everyone will be on a level playing field.

Source: UbuntuHack Tickets, Fri, Feb 17, 2017 at 4:00 PM | Eventbrite

Responsible Communication Style Guide

The Responsible Communication Style Guide is available for pre-order.

The words we use to talk about different situations, companies, and people have a huge impact on what we think. While style guides like the Associated Press Stylebook are used in newsrooms and public relations offices alike, they don’t cover identity well – if they mention topics like gender or race at all, they just touch on the surface. Identity is a crucial topic for anyone writing today to get right, especially in fields like technology, where we need to talk about our users and audience in a way they find inclusive and understanding.

The Responsible Communication Style Guide will cover how to write about five key topics:

  • Race
  • Gender
  • Sexuality
  • Religion
  • Health and Well-Being

Source: Pre-order The Responsible Communication Style Guide – The Recompiler

If you want your organization to be diverse and inclusive, it takes a lot of hard work. You have to listen, expand your networks, rethink your assumptions … and you also have to make sure how you talk about what you’re doing doesn’t negate all the effort you’ve put in. Luckily, there’s help at hand: The Responsible Communication Style Guide.

We chose to describe these styles as ‘responsible’ because, for us, writing and creating other media comes with an obligation to tell stories clearly and accurately. Doing anything else – misrepresenting an interviewee or offending an audience – is irresponsible. Personally, I feel that my writing is best when I consider how it will impact people long before I hit the button to publish anything.

For us, basing the guide on our editors’ lived experience is crucial and factors into all of our decisions. This is already providing some major insights into our recommendations. It’s pretty clear that many style guides don’t have people advocating from their own areas of expertise.

We’re also finding that lived experience is crucial when dealing with the differences between the style guides put out by organizations such as GLAAD and other organizations. There are some substantial differences in how to handle identical terminology between different groups, like how a style guide covering aging talks about disabilities and how a style guide about specific accessibility issues covers the same terms. We’re tackling these topics with an intersectional approach – not just by having experienced editors from a specific community, but by also cultivating conversations between people with a variety of backgrounds.

Source: Words Matter: Thursday Bram on the Art of ‘Responsible Communication’ | Design.blog

Community Event Planning

Audrey Eschwright, contributor to the Responsible Communication Style Guide also contributed to the great Community Event Planning.

If you’ve ever thought about hosting a code sprint, hackathon, (un)conference or workshop, this book is for you. In it, we explain what you need to know to plan and execute a successful event, including:

  • assembling and organizing your planning team
  • identifying and securing a venue for your event
  • how to get money and pay for things
  • volunteer recruitment and management
  • determining your event format and creating your event’s schedule
  • advertising your event
  • tickets and registration
  • insurance, liability and what to do when things go wrong
  • deciding on must-haves and nice-to-haves (e.g., food, wifi, etc)
  • dealing with venue logistics (space, sound, power, etc.)
  • codes of conduct, after parties, considerations for serving alcohol
  • how to keep the momentum once your first event is over

Source: Community Event Guide

Language and structural racism

And as attentive as I am to languages, and as sensitive as I am to it as a writer, and as much as I believe that insight can be found or lost through language, I do think that when it comes to racism, we pay too much attention to language, and we give language a power that I don’t believe it actually has. When in fact, I think there are many graver actions that are happening that happen without anyone ever saying anything offensive.

And that a lot of our policing of offensive language – it’s not that that is unimportant, it’s not that people should be allowed to say whatever they want, but I feel that there’s extra energy put into that policing because we aren’t sure how to address the real problems, and how to address the kind of systemic racism that happens without anyone ever saying anything that would look to us like racism. And I think that this is part of how we’re hobbling ourselves around, coming to kind of broader and more advanced understandings around what’s going on with race.

Source: Eula Biss — Let’s Talk About Whiteness – | On Being

#ActuallyAutistic perspective on High Functioning and Low Functioning labels

We’re dismissed either way.

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

Culture, Autonomy, Communication, Diversity and Inclusion

Five important things.

Culture and Autonomy

When we survey our employees, culture and autonomy always come up as top reasons people stay.

Why we stay at Automattic: culture and autonomy
Why we stay at Automattic: culture and autonomy

Source: 2016 Year Review

Culture always wins over tools and technologies, but most of the business world is tone deaf to understanding culture.

Source: FAQ about The Year Without Pants (with satisfying answers)

Culture can be the foundation for all future innovation, or it can be the single biggest resistance to innovation. Don’t fuck up culture.

Source: Project-based Learning and School Culture

Communication is Oxygen

793 Slack channels, 441 P2 blogs, 4,628 Zoom video chats
793 Slack channels, 441 P2 blogs, 4,628 Zoom video chats

That’s a lot of writing.

In the age of distributed collaboration, we are constantly writing.

Source: Writing in Education and Plain Text Flow

Change the technology culture of school. The voice & choice of inclusive education needs an open by default infrastructure for communication and collaboration. Technology will not find its place in the classroom until we move away from the remediation of the deficit model and embrace open and accessible collaboration.

Source: Communication is oxygen. Build a district wide collaboration infrastructure and an open by default culture.

Diversity and Inclusion

ICYMI, I’m sharing recaps of my D&I professional development. I hope and intend to continue this series.

Diversity & Inclusion Recap #1