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

Inclusion and the upcoming DSISD school board election

Three candidates are vying for two seats in the election for the Dripping Springs ISD school board on May 6th. DSISD has been the center of a lot of attention around bathroom bills and transgender exclusion. Many DSISD families rallied in support of inclusion, as did incumbent board members Barbara Stroud and Ron Jones. They received a lot of pressure from Lt. Governor Dan Patrick and the anti-inclusion group Texas Values, including harassing phone calls.

Both Stroud and Jones are up for re-election. In a recent candidate forum, challenger Trey Powers came out as anti-inclusion, invoking the zero-sum talking point that accommodation is “at the expense of other [children].” His solution is segregation.

Segregation is always wrong. Inclusion is the new normal. I will not vote for anyone who sides with segregation. As such, Barbara Stroud and Ron Jones will be getting my vote. They sided with inclusion.

Schools with transphobic bathroom policies break the codes of collaboration. They don’t meet the standards for hosting WordCamps, WordPress Meetups, or Automattic sponsored events. They eliminate themselves from hosting meetups for many open source communities, something schools should be doing more of, not less. Phobic policies distance public education from the creative commons and the engines of modernity.

In an era of massive software driven change, the culture of public education should be compatible with the norms of agile teams and distributed collaboration. Self-organizing teams working in open by default, inclusive by default cultures build great things. This is the present and future of work. What we’ve learned over decades of iterating development culture for adult creatives applies also to students.

Our market is the world. Our audience is the world. Designing for the lived experiences of the full spectrum of human diversity requires working inclusively. Together, we will iterate our way through massive software-driven change. We will navigate disruption with compassion, finding opportunity and inspiration in the diversity of our shared humanity. We are humans making things for and with other humans, helping each other cope with sentience and senescence on our pale blue dot. Communicate, collaborate, iterate, launch. With these tools we’ll make it through.

Inclusion is the new normal. Inclusion is the way to our boldly better future. Diversity is a fact of the modern world that is good for society and good for business.

Source: Inclusion is the new normal

Passion-based maker learning, social model inclusion, and indie ed tech are the way forward. Segregation and exclusion are retreats into fear and ignorance.

Instead of connecting neurodivergent kids with an identitytribe, and voice, we segregate and marginalize them. We medicalize and assess them. We demand their compliance and rarely ask for consent. We define their identities through the deficit and medical models and then tell them to get some grit and growth mindset. We reduce emancipatory tech to remedial chains.

Let’s embrace instead the voice and choice of project-based, passion-based maker learning and inform it with neurodiversity and the social model of disability. Create a future of education and work where neurodiverse teams of project-based learners use technology and design thinking to communicate, collaborate, iterate, and launch to authentic audiences of fellow humans.

End the segregation of special.

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

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

Source: Bathroom Bills, Neurodiversity, and Disability

Early voting starts on April 24th. Here is an application for a mail-in ballot. Candidate applications and bios, which still contain very little information or transparency, are available here.

Navigating Autism Acceptance Month

April is a tough month for #ActuallyAutistic people. We do not support Autism Speaks or the Light It Up Blue campaign. Many autistics consider Autism Speaks to be a eugenicist hate group that talks over autistic people, spreads harmful “awareness”, funds research that abuses and kills us, and diverts resources. April is a month of disinformation, and Autism Speaks is responsible for much of it.

This video explains what’s wrong with Autism Speaks.

I gathered articles from actually autistic folks sharing their views on Autism Speaks in this collection of links.

Autistic people are not puzzle pieces. Instead of the puzzle piece propagated by Autism Speaks, use the neurodiversity rainbow infinity symbol.

Autism Acceptance (or Appreciation) Month is preferred over Autism Awareness Month. acceptance > awareness

Instead of supporting Autism Speaks, support The Autistic Self-Advocacy Network (ASAN) and Autism Women’s Network.

Instead of promoting Autism Speaks, Light It Up Blue, and puzzle pieces, promote these.

#ActuallyAutistic

#REDinstead

#AutismAcceptanceMonth

#BoycottAutismSpeaks

#AreYouAwareOfMeNow

#NothingAboutUsWithoutUs

I’ll be updating this Twitter moment with autistic voices over the course of Autism Acceptance Month.

We have enough “awareness”. The time is now for acceptance and inclusion.

Diversity and Inclusion Recap #4

In this one:

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

Autism self-diagnosis, #SelfDxIsValid

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

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

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

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

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

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

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

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

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

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

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

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

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

Source: My thoughts on Self-Diagnosis | autisticzebra

Ally Skills

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

Guidelines for future ally work

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

Source: Ally Skills

Eugenics and deficit ideology

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

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

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

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

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

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

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

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

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

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

“Doing something” about autism

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

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

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

Networked protest, inclusion, and coalition building

Face blindness

I love cartoons. 🙂

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

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

4Chan, GamerGate, and lonely toxic masculinity

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

Reporting on trolls

Bathroom bills and controlling women’s bodies

Unique ways white women enact racism

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

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

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

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

Source: Unique Ways White Women Enact Racism – Medium

ASL syntax and injustice

Agency and institutions

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

Mental health and policing

Hierarchical ableism

Accountable activism

Racism + ableism

Addiction and injustice

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

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

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

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

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

Disability in America

“You don’t matter.”

“You’re not worth it.”

“You’re not a person.”

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

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

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

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

Getting older in tech, life long learning

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

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

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

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

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

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

Source: On Getting Old(er) in Tech

Design thinking and exclusion

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

DESIGN THINKING HAS AN EXCLUSION PROBLEM

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

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

ACT FAST—THEN KEEP ITERATING

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

“APPROACHES, NOT SOLUTIONS”

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

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

Unpacking the “common sense” of bathroom bills

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

Programming and prejudice

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

Technical Majority and Tech Forward

Her Story

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

Blog for inclusion

Civil rights data

Race in architecture

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

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

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

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

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

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

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

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

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

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

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

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

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

Domestic violence, stress cases, and personas

Mental health and stigma

Dyslexia and tech

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

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

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

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

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

Ethics in algorithms

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

Aro, ace, cishet, and allosexual

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

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

Exponential growth devours and corrupts

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Source: Exponential growth devours and corrupts

Identity, tribe, and voice

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

Intersectionally exhausted

A week as a woman

Respectful collection of data

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

Source: Respectful Collection of Demographic Data – SheNomads – Medium

Interaction badges

I added this interaction badge spotting to my Interaction Badgespost.

Low-functioning and high-functioning labels

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

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

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

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

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

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

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

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

Autism and LGBTQIA intersectionality

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

The ableism of #EndofDisability

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

Representation in online gaming

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

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

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

Uber

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

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

Source: Reflecting on Susan Fowler’s Reflections – Medium

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

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

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.

The Effects of Authority, Compliance, and Pathologizing Students

Two pieces on authority in education and a piece on side effects in education caught my eye on social media this week. The first is a Bruce Levine piece from 2012 on Why Anti-Authoritarians are Diagnosed as Mentally Ill that resonates with this social model self-advocate. Neurodivergent and disabled folks are medicalized, pathologized, and written off at school. Levine’s narrative complements Jonathan Mooney’s Learning Outside The Lines and Alan Schwarz’s ADHD Nation.

Having steered the higher-education terrain for a decade of my life, I know that degrees and credentials are primarily badges of compliance. Those with extended schooling have lived for many years in a world where one routinely conforms to the demands of authorities.

So authoritarians financially marginalize those who buck the system, they criminalize anti-authoritarianism, they psychopathologize anti-authoritarians, and they market drugs for their “cure.”

Second is a piece by Seth Godin on how school conditions us to accept working under authority rather than working with each other. Education has a deficit of collaboration.

We build school around the idea of powerful teachers, coaches and authority figures telling us what to do.

In our connected, networked world, communication is oxygen and collaboration–not deference to authority–is our way forward.

The third is great longform by Yong Zhao on side effects in education.

But side effects exist the same way in education as in medicine. For many reasons, studying and reporting side effects simultaneously as has been mandated for medical products is not common in education.

It is difficult for an educational system that wishes to cultivate a homogenous workforce to also expect a diverse population of individuals who are creative and entrepreneurial. Research has also shown that test scores and knowledge acquisition can come at the expense of curiosity and confidence.

What are the effects and side effects of the deficit model, compliance culture, and willful unawareness of structural problems and social injustice? They exact a huge toll on the marginalized and the different. Put a warning label on our systems.

Pathologizing Anti-Authoritarians

In my career as a psychologist, I have talked with hundreds of people previously diagnosed by other professionals with oppositional defiant disorder, attention deficit hyperactive disorder, anxiety disorder and other psychiatric illnesses, and I am struck by (1) how many of those diagnosed are essentially anti-authoritarians, and (2) how those professionals who have diagnosed them are not.

Anti-authoritarians question whether an authority is a legitimate one before taking that authority seriously. Evaluating the legitimacy of authorities includes assessing whether or not authorities actually know what they are talking about, are honest, and care about those people who are respecting their authority. And when anti-authoritarians assess an authority to be illegitimate, they challenge and resist that authority-sometimes aggressively and sometimes passive-aggressively, sometimes wisely and sometimes not.

Some activists lament how few anti-authoritarians there appear to be in the United States. One reason could be that many natural anti-authoritarians are now psychopathologized and medicated before they achieve political consciousness of society’s most oppressive authorities.

The selection and socialization of mental health professionals tends to breed out many anti-authoritarians. Having steered the higher-education terrain for a decade of my life, I know that degrees and credentials are primarily badges of compliance. Those with extended schooling have lived for many years in a world where one routinely conforms to the demands of authorities. Thus for many MDs and PhDs, people different from them who reject this attentional and behavioral compliance appear to be from another world-a diagnosable one.

I have found that most psychologists, psychiatrists, and other mental health professionals are not only extraordinarily compliant with authorities but also unaware of the magnitude of their obedience. And it also has become clear to me that the anti-authoritarianism of their patients creates enormous anxiety for these professionals, and their anxiety fuels diagnoses and treatments.

Do we really want to diagnose and medicate everyone with “deficits in rule-governed behavior”?

So authoritarians financially marginalize those who buck the system, they criminalize anti-authoritarianism, they psychopathologize anti-authoritarians, and they market drugs for their “cure.”

Source: Why Anti-Authoritarians are Diagnosed as Mentally Ill

Author and clinical psychologist Bruce Levine sits down with Open Paradigm to discuss society’s relationship to drugs, psychiatry’s increasing credibility issue, and the cultural response to incidents of mass violence.

With > Over

For thousands of years, we’ve built our culture to teach people to not only tolerate a powerful overlord, but in a vacuum, to seek one out. We build school around the idea of powerful teachers, coaches and authority figures telling us what to do. We go to the placement office to seek a job, instead of starting our own thing, because we’ve been taught that this is the way it works, it’s reliable, it’s safer.

And so we’re pushed to begin with under, not with.

The connection economy begins to undermine this dynamic. But it’s frightening. It’s frightening to have your own media channel, your own platform, your own ability to craft a community and 1,000 true fans. So instead, we seek out someone to tell us what to do, to trade this for that.

I think it’s becoming clear that power doesn’t scale like it used to. Too many unders and not enough withs.

But, each of us can change our perspective, as soon as we’re ready.

Find your with.

Source: Seth’s Blog: Over/with

Side Effects in Education

Educational research has typically focused exclusively on the benefits, intended effects of products, programs, policies, and practices, as if there were no adverse side effects. But side effects exist the same way in education as in medicine. For many reasons, studying and reporting side effects simultaneously as has been mandated for medical products is not common in education.

In this article just published in the Journal of Educational Change, I discuss why education must learn the important lesson of studying and reporting side effects from medical research. Side effects in education occur for a number of reasons.

First, time is a constant. When you spend time on one task, you cannot spend the same amount on another. When a child is given extra instruction in reading, he/she cannot spend the same time on arts or music. When a school focuses only on two or three subjects, its students would not have the time to learn something else. When a school system only focuses on a few subjects such as reading and math, students won’t have time to do other and perhaps more important things.

Second, recourses are limited. When it is put into one activity, it cannot be spent on other. When school resources are devoted to the common core, other subjects become peripheral. When schools are forced to only focus on raising test scores, activities that may promote students’ long-term growth are sidelined.

Third, some educational outcomes are inherently contradictory. It is difficult for an educational system that wishes to cultivate a homogenous workforce to also expect a diverse population of individuals who are creative and entrepreneurial. Research has also shown that test scores and knowledge acquisition can come at the expense of curiosity and confidence.

Fourth, the same products may work differently for different individuals, in different contexts. Some people are allergic to penicillin. Some drugs have negative consequences when taken with alcohol. Likewise, some practices, such as direct instruction may work better for knowledge transmission, but not for long term exploration. Charter schools may favor those who have a choice (can make a choice) at the costs of those who are not able to take advantage of it.

Source: Education in the Age of Globalization » Blog Archive » What Works Can Hurt: Side Effects in Education

Canned Emotional Skills and School Pride

These programs often include conformist type activities to promote school pride. Gifted kids often struggle with authoritarianism and can have behavioral issues due to mis-fitting educational experiences. If they feel teachers or the system isn’t understanding or working with their needs, they are going to struggle with school pride.

Source: Danger in a Can: Why Canned Social-Emotional Skill Programs in Schools Can Harm Gifted Students More Than Help Them – SENG