Neurodiversity and Cognition Representation

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

From our D&I statement:

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

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

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

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

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

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

Neurodiversity is the diversity of human brains and minds – the infinite variation in neurocognitive functioning within our species.

The neurodiversity paradigm is a specific perspective on neurodiversity – a perspective or approach that boils down to these fundamental principles:

1.) Neurodiversity is a natural and valuable form of human diversity.

2.) The idea that there is one “normal” or “healthy” type of brain or mind, or one “right” style of neurocognitive functioning, is a culturally constructed fiction, no more valid (and no more conducive to a healthy society or to the overall well-being of humanity) than the idea that there is one “normal” or “right” ethnicity, gender, or culture.

3.) The social dynamics that manifest in regard to neurodiversity are similar to the social dynamics that manifest in regard to other forms of human diversity (e.g., diversity of ethnicity, gender, or culture). These dynamics include the dynamics of social power inequalities, and also the dynamics by which diversity, when embraced, acts as a source of creative potential.

Source: Neurodiversity: Some Basic Terms & Definitions

The word “neurodiversity” was coined in the 1990s by an Australian sociology grad student named Judy Singer after reading a book about the social model of disability, which proposes that disability is a product of the way society is organised, rather than by limitations imposed by a person’s condition. In a world without wheelchair ramps and accessible buildings, wheelchair users have very few choices about where they can go. But in a world that accommodates wheelchair users, they have many more choices. Neurodiversity extends the social model of disability into the realm of cognitive differences like autism, dyslexia, and ADHD. How can we make the world safer and more welcoming to people with these conditions so they can lead happier, healthier, and more autonomous lives? That’s the question that the neurodiversity movement asks.

Source: Steve Silberman recommends the best books on Autism

Neurodiversity: the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions.

Source: NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

Human cognitive diversity exists for a reason; our differences are the genius – and the conscience – of our species.

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

Through the lens of the neurodiversity paradigm, the pathology paradigm’s medicalized framing of autism and various other constellations of neurological, cognitive, and behavioral characteristics as “disorders” or “conditions” can be seen for what it is: a social construction rooted in cultural norms and social power inequalities, rather than a “scientifically objective” description of reality.

Source: Autism and the Pathology Paradigm

Diversity & Inclusion Recap #3

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

In this one:

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

All that we share

Compassion and inclusion.

Sexist things teachers says

Coding pipelines

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

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

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

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

Acceptance > Awareness

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

Source: Acceptance > Awareness – Ryan Boren

Women in executive roles

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

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

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

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

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

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

Disability representation in stock photography, invisible disability

On disability tropes in stock photography.

1. Use a (manual) wheelchair.

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

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

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

The Bell Curve of Despair

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

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

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

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

Making it through

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

Tolerance and the Paradox of Free Speech

Born to learn, collaborative learning communities

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

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

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

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

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

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

Educate for massive software driven change

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

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

Diversity Hiring

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

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

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

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

Source: How Diversity Hiring is Like Startup Investing – Medium

Rethinking Learning to Read

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

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

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

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

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

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

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

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

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

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

Read the whole thing. Highly recommended.

Ableist Job Requirements

Autism Diagnosis Rates, Anti-vaxx Pseudoscience

Teen Vogue

Teen Vogue is doing great intersectional and structurally aware journalism.

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

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

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

Context Matters, Identity First

Something we #ActuallyAutistic say over and over.

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

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

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

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

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

Diversity and Unpaid Internships

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

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

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

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

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

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

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

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

Source: The View From Flyover Country

Tech Soul Searching and Solidarity

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

Mindfulness and bikeshedding the deficit model

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

LambdaConf and Codes of Conduct

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

Ex-evangelical Perspective

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

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

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

White male views on diversity

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

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

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

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

Inspiration Porn

Hackathon for reconciliation

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

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

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

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

Responsible Communication Style Guide

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

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

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

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

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

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

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

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

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

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

Community Event Planning

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

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

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

Source: Community Event Guide

Language and structural racism

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

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

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

#ActuallyAutistic perspective on High Functioning and Low Functioning labels

We’re dismissed either way.

Bathroom Bills, Neurodiversity, and Disability

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

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

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

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

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

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

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

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

Source: Bathroom bills hurt people with disabilities

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

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

Source: Living between genders | Spectrum

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Source: The Other Bathroom Wars – The New York Times

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

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

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

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

Acceptance > Awareness

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

Awareness means we know what is hard for us. As we grow up autistic we are measured against the yardstick of “normal” in many ways over and over. Thus, autistic children often have a keen sense of who they are NOT. This deficit-based understanding may be necessary in the diagnostic realm, but it does little to support a healthy lifestyle. Who we ARE in this world – our abilities, strengths and interests – provide us with a satisfying life because that is the way it is with human beings. And yes, autistic people regardless how autistic they may or may not be, are ALL human beings. This means ALL autistics have intrinsic value.

Awareness focuses on the deficits – on understanding the deficits of the autism diagnosis – which leads to general assumptions by society of a substandard, less than group of people and it spirals downward from there, as we all have seen in today’s status quo autism rhetoric, stereotypes and assumptions. Awareness extends a hand the erroneous idea of a flawed group of substandard human beings. Awareness often provides the fertile soil supporting the growth of inspiration porn about our tribe.

Acceptance focuses on autistics rather than on autism. And yes, there is a difference. Autism is our diagnosis; it is about what is hard for us. Autistic is who we are as autistic human beings; being autistic is about who I am in this world, how I function and what I contribute. Acceptance lends itself to ideas of equality, the premise of different rather than lesser creatures. This can lead to an upward spiral towards embracing concepts such as neurodiversity, inclusion and universal design.

For society, when awareness is the focus – society understands the deficits and which, when unbalanced with the humanity of autistics, often result in a hopeless and burdensome feeling. I believe when autistic acceptance becomes society’s focus we will shift to looking at abilities, strengths, interests of autistic individuals, which will then allow us our place in the fabric of society – as actually equal human beings.

So, at this point in time, as a society we have mostly Autism Awareness, especially during the month of April. We also do have a tiny wee bit of Autism Acceptance, mostly from autistic people themselves and their allies. When society is focused on Autism Awareness deficits of autistic people and inspiration porn about them are highlighted. When society is focused on Autism Acceptance strengths and abilities of autistic people are highlighted.

Source: Autism Awareness and Autism Acceptance • Ollibean

The more we learn, the more we understand each other. When we move beyond the made up idea of “normal”, inclusion is no longer a “task”.

Besides the inclusion of Autistic students in schools, Universal Design is also about a mentality of acceptance. It is about valuing the whole person, including the person’s neurology.

Universal Design, inclusion in education, employment and environment would not only be beneficial to all students, it would make navigate a sometimes hostile-to-our-senses environment easier, better, possible.

Universal Design and Autism Acceptance are related when one modifies the environment and the practices in order to benefit everyone, instead of trying to change the Autistic brain.

Acceptance and Universal Design don’t require people to have superpowers in order to succeed. Our value is intrinsic.

Source: Universal Design and Disability Acceptance • Ollibean

It is April again. The month when Autistic anxiety increase is directly proportional to the “autism awareness” marketing strategy.

All this comes attached with the Autism Awareness Month reminder.

All this also brings the stigma, the fear mongering, the bias, the pity porn, the hate towards Autistics.

All this elevates the voices of non-autistic parents (often times martyred parents) and professionals, while silencing our voices.

Our anxiety increases, we use most of our energy to send this simple
message: “we are here, we are human, listen to us”.

It is extra draining in April because “awareness” is so loud and scary, we need a lot more strength. The organizations that raise money by using fear of our neurology, double down on the hateful rhetoric. It stings harder, it cuts deeper, it hurts more.

Awareness says: Here is your child. Unfortunately this is a defective child.

Maybe, if you work with this kid hard enough, you will be able to have at least a tiny taste of the joys of parenthood. You will need a lot of money. I am sorry for you. Good luck, don’t expect too much.
Acceptance says: Here is your child! Congratulations!

Awareness says: This is the list of all of your child’s deficits. Good luck, I am so sorry.

Acceptance says: Here is a list of things your child might do differently. Since Autistic brains process things differently, the best approach is to listen to, and observe the child, making necessary accommodations for her to achieve full potential.

Awareness says: Your child cannot understand human feelings. Your non-verbal child will never say “I love you”

Acceptance says: Your child processes feelings in a way that might seem odd, but the feelings are real. The love received will come back, sometimes in a non-speaking way.

Awareness says: Correct those behaviors! Fix this mess! Acceptance says: Behavior is communication. Understand and respect.

Awareness says: Don’t trust the adults who “have autism”. They are too “high-functioning” to understanding the heartbreaking struggles of “real” autism.
Acceptance says: Everyone struggles. Seek your community/your child’s
community for input.

Awareness says: Those “low-functioning” people “with autism” cause too much pain. Burdens! Poor parents!
Acceptance says: Everybody has something to offer and do contribute when supported.

Awareness says: Beware of autism! It will cause havoc in our lives! All these people! How tragic!
Acceptance says: Diversity! Neurodiversity enriches our lives.

Awareness says: Donate to the awesome organizations that have all the pretty puzzle pieces and all the pretty blue lights!

Acceptance says: Support, include everyone!

Source: I Don’t Want Your Awareness by Amy Sequenzia

What has the awareness walk done for Autistics and their families? – Nothing.

The money raised will not come back to the community as services. It never does.

If you still want Autism Awareness you are part of the problem. The world is so “aware” of us, it fears our existence. Is that what you want for your loved one?

Because some Autistics already experience acceptance and they are thriving.

Families that practice acceptance and embrace neurodiversity are not fighting the Autistics they love, they are fighting for what will translate into success.

Meanwhile, Autistics are really helping the community, under the word ACCEPTANCE. Autistics helping Autistics (with the support of true allies).

You can choose awareness, you can feel “blue” and throw your money in the pockets of hateful and powerful people that might offer help, but instead deliver sorrow, or you can move forward, not in circles, knowing that your money will be used to really help someone and build a more accepting world for the future generation of Autistics

You can choose to be aware of autism and beware of Autistics, or you can choose acceptance and opportunity for all Autistics.

Awareness is not respect.

Awareness does not help.

Awareness is walking in circles, always ending where you started.

Source: What Good Does Autism Awareness Do? It Doesn’t

“Acceptance is an action.”

Autism Acceptance Month takes place every year during April. The first Autism Acceptance Month celebrations were organized by Paula Durbin Westby in 2011, as a response to traditional “Autism Awareness” campaigns which the Autistic community found harmful and insufficient. “Autism Acceptance” as a concept has a history as long as the Autistic community itself, dating back to Jim Sinclair’s seminal classic “Don’t Mourn For Us” and perhaps most visibly popularized by Estee Klar’s “The Autism Acceptance Project.”

Source: Autism Acceptance Month

First, when talking about disabilities, we should promote acceptance.

Acceptance, because we all have rights that must be respected. “Awareness” often brings an undesired side effect of pity, and depending on what organization is promoting it, a lot of misinformation and pain to the disabled people supposedly benefiting from the campaign (Autism Speaks being the perfect example of this abusive practice).

Second, “Awareness” campaigns are usually planned by non-disabled people, with a non-disabled perspective. The intentions are generally good but the unintended consequences are sometimes silencing and damaging.

When non-disabled people, or advocacy organizations, make the decisions about how the awareness campaigns (or their advocacy efforts) are going to be run, and they don’t listen to what disabled people have to say, the message can be a mistaken one.

Instead of awareness of what access needs, accommodations and means to utilize our strengths, the focus becomes our perceived deficits, how “hard being disabled is”. In some cases, the focus shifts to our families, usually with a damaging rhetoric (if the organization is – again – Autism Speaks, the damage and hurt are enormous).

There are seemingly subtle, but important, differences between “awareness” and “acceptance” campaigns.

Source: Why I Don’t Like “Awareness” by Amy Sequenzia

The history of the Disability Rights Movement should be taught in all schools. It is vitally important that leaders with disabilities are accurately represented in history and sadly, right now, there seems to be more in schools about “Disability Awareness” than the social justice component of fighting for access and inclusion. If you are a parent of a child with a disability, start learning about Ed Roberts together now. You can read Henry’s take on that here.

Source: Thank You Ed Roberts

Awareness is people talking to you.

Acceptance is people respecting you.

Awareness is that high-pitched, baby voice.

Acceptance is speaking in a normal tone.

Awareness is being invited to the table.

Acceptance is making sure that you can reach everything on it.

Awareness is acknowledging that you have autism.

Acceptance is acknowledging that you are autistic, and that that fact alone makes you more knowledgeable about autism than any non-autistic person.

Awareness is doing science.

Acceptance is doing good, solid science, science that will be able to be replicated and proven and published, science that genuinely helps people, science that has implications for the future, science that is not just good in itself, but is doing good.

If you want to conduct a research study, you need to make sure that you are not just aware of autism, because being aware is not enough. You need to accept autism, and you need to respect the study participants as capable adults.

Source: THINKING PERSON’S GUIDE TO AUTISM: An Advocate Asks for Acceptance in Autism Research

Every April, parent- and professional-led autism charities ask their supporters to spread awareness by lighting buildings and monuments up blue, wearing blue clothing, and pinning puzzle piece lapels to their shirts.

This does nothing to address the very real practical issues that we face. Instead, the substance of these campaigns more often spreads fear and promotes harmful stereotypes. Autism Speaks, the organization responsible for the Light It Up Blue campaign, describes the current generation of autistic children, adolescents, and young adults as a public health crisis and burden on families and governments. Over the long history of the puzzle ribbon, it has often been associated with a belief that autistic people are missing pieces, which must be found so we can be made whole. With this context, many of us see puzzle ribbon bumper stickers and blue lights on our city’s landmarks as signs of hate, not support.

Source: 5 Guidelines to keep in mind during Autism Acceptance Month | AssistiveWare

It seems that every time that an Autistic person says “I don’t want your awareness“, someone else comes along and says that without awareness, we’ll never gain acceptance.

That is such a ridiculous argument.

It wouldn’t be ridiculous if autism awareness campaigns spent time focusing on making society aware of what can be done to accommodate us. It wouldn’t be ridiculous if autism awareness campaigns showed us being who we are: People who are different from many, but people nonetheless.

But autism awareness campaigns don’t focus on those sorts of things. They focus on the problem that we create for our families. Campaigns focus on how many of us there are. They focus on how much we cost. Awareness talks about us as a problem which must be solved.

People don’t accept problems. They fear them. They try to fix them.

Can you imagine what it feels like to be seen as a problem?

Source: Awareness cannot lead to acceptance | Un-Boxed Brain

To rephrase, acceptance is about seeing my son, and his autism spectrum-mates clearly: as fellow glorious, imperfect, deserving human beings, and not as “puzzle pieces,” burdens, or cure-bait. Yes, autistic people need supports, and some need intensive supports. But so will all non-autistic people who live long enough, or whose life circumstances change to include disability. Don’t we all expect to have our needs understood and accepted, whatever those needs may be? Autistic people’s expectations are no different; what differs is whether or not society recognizes and accepts autistic needs.

I have to emphasize that acceptance is not a matter of convenience, inclination, or choice; for my son and other autistic people, it can be a matter of life and death. Recent research indicates that autistic lifespans are significantly shorter than those of non-autistic people.

Why? Mostly for co-occuring medical reasons like epilepsy, but often due to suicide. And what factors contribute to the kind of hopeless that leads to suicide, for autistic people? Could it be … hmm … a lifetime of PTSD due to having one’s needs dismissed and disrespected? Could it be having all one’s autistic “behaviors” quashed or punished instead of compassionately investigated? Could it be the stress of being overlooked and undiagnosed, or told one is “not really autistic enough” for services — even thought it is well documented that autistic people often struggle to remain employed, and need accommodations and supports for many aspects of “adulting“? Could it be … constant exposure to Autism Speaks-led messaging about how autistic people are diseased burdens? Could it be messages from widely-praised autism books that describe murders of high-support autistic people like Leo as “mercy killings”? Could it be the ceaseless “April Autism Awareness” negativity that scares the crap of autistic people themselves?

Our society needs to do better by autistic people, and we can start by ensuring that our messages about April and autism focus on supporting, and loving autistic people for who they are, as part of our families and communities.

Acceptance means autistic people matter. Awareness just means we know autistic people exist. Awareness doesn’t draw any distinctions between epidemic-mongering, pseudo-science-promoting parents publicly embarrassing their autistic children, and autistic people themselves speaking up for better recognition and inclusion.

And here is where promoting acceptance can make yet another difference: when people start asking questions about autism for the first time, and are searching for information, do we want them to find resources that terrify them and send them spiraling into despair-fueled cure-seeking, or do we want resources that help them better understand what autism means, and how to help autistic people — and their families — live the best lives possible, so everyone wins?

Source: Forget Awareness. Let’s Make It  Autism Acceptance Month | SheKnows

Diversity & Inclusion Recap #2

In this issue,

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

Trans Autistic

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

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

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

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

I also added this selection.

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

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

Medical model flow

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

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

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

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

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

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

Embrace the obsession

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

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

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

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

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

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

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

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

Designing with mental health in mind

With great examples of designing for real life.

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

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

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

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

My autistic operating system particularly relates to this:

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

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

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

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

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

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

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

Minority Media

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

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

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

Source: The year of minority media » Nieman Journalism Lab

Psychological safety in the age of Trump

Disability in the age of Trump

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

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

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

Written communication as social equalizer

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

Written communication is the great social equalizer.

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

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

Getting online was revolutionary and may have saved my life.

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

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

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

Hidden disability

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

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

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

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

I added this to Hidden Disability.

Sensory Regulation, Sensory Diet

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

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

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

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

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

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

Biased design

A biased, unethical design choice.

Design, Engineering, Skills, and Social Justice

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

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

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

Source: Programs – Girls Garage

There is no path toward educational justice that contains convenient detours around direct confrontations with injustice. The desperate search for these detours, often in the form of models or frameworks or concepts that were not developed as paths to justice, is the greatest evidence of the collective desire among those who count on injustice to give them an advantage to retain that advantage. If a direct confrontation of injustice is missing from our strategies or initiatives or movements, that means we are recreating the conditions we’re pretending to want to destroy.

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

Self segregation

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

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

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

Source: Why America is Self-Segregating

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

Empathy Gap and Critical Distance

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

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

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

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

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

Source: Sociology: Understanding a Diverse Society

Racial Wealth Gap

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

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

Get structural.

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

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

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

Inspiration Porn

Media coverage of disability is often informed by some of our worst ideas about difference. Coverage of disability tends to be pornographic - not in the sense of sexual titillation (mostly), but focused on evoking feelings in the consumer, rather than authentically displaying the lived experience of the subject. In the disability rights community, we tend to critique suchrepresentations as “inspiration porn,” a phrase popularized by the late activist Stella Young.

There are at least three basic types of inspiration porn. In one, a disabled person does something normal - like dance to Lady Gaga - and the viewer feels inspired because the disabled person can do this normal thing. Look at them overcome their disability! the narrative goes. This framework cheapens real accomplishments and rarely considers the socially-constructed obstacles to broad success for people with disabilities.

In the second type, an abled person does some basic act of kindness - such as having lunch with an autistic kidisolated at school, stopping work to feed a disabled customer at a restaurant, or inviting a disabled teen on a date. The abled person is then celebrated for their goodness, with the disabled person turned into an object on which the able person acts. Again, structural issues leading to the need for abled intervention vanish.

In the third type, often distinguished as “tragedy porn,” a horrible situation involving a disabled person is displayed, sometimes with comments about overcoming or courage, with the goal of providing perspective on your own (presumably not as bad) troubles. Perspective can be good, but again, the disabled person’s experiences are being leveraged as a tool to make the viewer feel something.

Cuteness is a way of aestheticizing powerlessness.” Many disabled adults, especially those with Down syndrome and Little People, are treated as perpetually cute children.

Because disability is a part of humanity’s natural diversity, it needs to be part of the important conversations we’re having about inclusivity.

Disability as identity and disability pride may be familiar concepts within the disability rights community, but they’re still pretty radical for the ableist world as a whole.

Source: Don’t Turn My Son’s Lady Gaga Dancing Into Your Inspiration Porn

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

Bias at Work

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

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

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

Accessibility for Real Life

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

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

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

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

Culture, Autonomy, Communication, Diversity and Inclusion

Five important things.

Culture and Autonomy

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

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

Source: 2016 Year Review

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

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

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

Source: Project-based Learning and School Culture

Communication is Oxygen

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

That’s a lot of writing.

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

Source: Writing in Education and Plain Text Flow

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

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

Diversity and Inclusion

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

Diversity & Inclusion Recap #1

Diversity & Inclusion Recap #1

Selections from my past few weeks of continuous D&I learning and writing.

Design for Humanity

I’m a big fan of Design for Real Life. Author Eric Meyer now has a Design for Humanity course.

Designing for humans is tough. We design for millions, but every interaction between our work and a user is personal, and we aren’t taught to take care with those interactions. I created this course because I want everything we design to meet the real needs and wants of real people.

If you want a set of tools for stress-testing your work to make sure it’s as human-centered, compassionate, and inclusive as possible, this is the course for you. I’ll show you how to approach designing for your users, and I’ll provide a set of tools and processes to stress-test your design work to make sure it’s as human-centered, compassionate, and inclusive as possible.

Source: Design for Humanity: A New Perspective on User Experience | Udemy

Harm reduction

I’m autistic with chronic, neuropathic pain. Cannabis and harm reduction are important and very personal topics to me.

The drug war’s perverse notions of addiction, addicts, and coping limit our vocabulary, stifle our empathy, and harm us all-especially those with neurodivergent operating systems and those enduring poverty and structural racism and ableism.

Through compassion, the social model, and respect for neurodiversity and structural disadvantages, we can improve our views of addiction.

Source: Harm reduction, addiction, tough love, 12 steps, neurodiversity, and the troubled-teen industry – Ryan Boren

Survivorship Bias and Harassment

Thread on survivorship bias in tech.

Survivorship bias, or survival bias, is the logical error of concentrating on the people or things that “survived” some process and inadvertently overlooking those that did not because of their lack of visibility.

Source: Survivorship bias – Wikipedia

Autism disclosure and professional life

But I’ve found that a potentially “safe” way to broach the topic is by way of bringing up “sensory sensitivity” and “sensory processing” terminology first. After all, people who don’t know they’re on the spectrum assume they’re neurotypical, and certain terminology is more palatable for them than other terminology. Sensory issues tend to be much more agreeable terms in the neurotypical world.

I then began to list characteristics, asking them in the form of questions, to all of which the person nodded, with increasing vigor with each subsequent question. Eventually, the person and their partner actually laughed and high-fived each other as if to say, “finally! Somebody gets it!” (And this person is not one who had been likely to laugh or high-five anyone, especially in front of a healthcare professional.)

I played a tennis match of yes-no in my brain. I hadn’t yet mentioned the terms Asperger’s or autism yet; should I, or shouldn’t I? After much internal back-and-forth I finally thought, “screw it; bring it up.”

So then came the magical question: “what do you know about Asperger’s/autism?”

And the dialogue proceeded from there, as I listened carefully to their answer and clarified the truths, gently adjusting their previously-held notions (which weren’t entirely negative). Then I listed off more characteristics in plain, everyday language, also to which they nodded enthusiastically.

I mentioned that a lot of us get misdiagnosed with what I call the “Usual 5” (and there may be others): depression, anxiety, ADHD, bipolar, and OCD, before we realize that we’re actually Aspergian/autistic, and that the spectrum condition actually explains all of the others, negating and replacing those other labels, which had been reluctantly accepted but never fully embraced, because they didn’t seem to fit.

I stated clearly that my “theory” about what was going on with this person was not, in fact, a diagnosis, but simply the former: a theory, an idea. Nothing more. And I added that if they wanted to investigate this further, that I recommended the following steps:

  1. Start with the self-quizzes; they’re not diagnostic, but they ask simple yes/no questions, and provide a quick, easy, no-cost starting point to see if the subject was even worth pursuing further
  2. Based on the score, then they can do several things, one of which is to search for blogs written by Aspergian/autistic adults, especially ones of their same gender, to see if what they say resonates with them
  3. Either instead of or immediately after reading the blogs, they can search for the positive attributes of Asperger’s/autism; knowing this person, going straight for the diagnostic criteria first might cause anxiety or depression, with all of the “impairments” and “difficulties” and “restricted” this and “insufficient” that. If interested, go for the happy stuff first.
  4. At any point, if they’d like to pursue an official evaluation, I know just the right specialists, and I’m more than happy to make the referrals.

Source: Professional Asperger’s / autism disclosure is almost always tricky for me – the silent wave

Desistence, Gender Dysphoria, and Neurodiversity

Thread on desistence and gender dysphoria.

I updated Neurodiversity and Gender Non-conformity, Dysphoria and Fluidity with selections from an article warning against “blaming” trans identity on autism. Respect intersectional identity.

To blame trans identities on autism is to say that autistic people cannot understand or be aware of their own gender. If an autistic person cannot know they are trans, how can they know they aren’t? How can they know anything about themselves?

When a person’s gender is doubted because they are autistic, this paves the way for removing autistic people’s agency in all kinds of other ways. If we can’t know this central aspect of our identity, we surely can’t know how we feel, what we like, or who we are. In short, it implies that we are not truly people, and that our existence, experiences, and identities are for other people to define. This is just another facet of dehumanising autistic people, and gender is certainly not the only area in which this happens.

In itself, the very urge to find a ‘reason’ that someone is transgender is a result of believing that being transgender is a problem, and that it would always be better not to be. The fact that clinicians like Zucker are focused on why someone is transgender, instead of focusing on what kind of help they need and how to best provide it, demonstrates clearly the belief that it is fundamentally bad to be transgender.

Not only that, but the belief that it’s even theoretically possible for anyone besides the individual in question to know what someone’s gender is. That’s just not how gender works! No-one really understand what gender is, or what it means, or where it comes from. The only thing we know for sure is that it’s internal, subjective, and personal. You can’t prove or test someone else’s gender any more than you can prove or test their favourite colour. The idea that it can be tested is constantly used to invalidate trans people. Our genders are doubted or disbelieved if we fail to adequately ‘prove’ ourselves to everyone else – if we express too many or too few gender stereotypes, if we are too old or too young, if we claim to be nonbinary or our description of our identity is too complicated or confusing.

The best option is to allow someone to explore their feelings, support them in gaining self-understanding, and accept their identity whatever it turns out to be. It is not complicated, and it’s only scary if you are still holding onto the belief that being either autistic or transgender – or, perish the thought, both – is a terrible thing to be. Which it’s not. I am, along with countless others like me, living proof of that.

Source: Blaming trans identities on autism hurts everyone | autisticality

Ableist autism parents

This thread offers #ActuallyAutistic perspective on ableist autism parents.

And here’s an in joke.

Accessibility

Oh how we wish for good alt text flow on Twitter.

Calypso also needs to give some attention to alt text flow.

Algorithmic Bias

Companies and government institutions that use data need to pay attention to the unconscious and institutional biases that seep into their results. It doesn’t take active prejudice to produce skewed results in web searches, data-driven home loan decisions, or photo-recognition software. It just takes distorted data that no one notices and corrects for. Thus, as we begin to create artificial intelligence, we risk inserting racism and other prejudices into the code that will make decisions for years to come. As Laura Weidman Powers, founder of Code2040, which brings more African Americans and Latinos into tech, told me, “We are running the risk of seeding self-teaching AI with the discriminatory undertones of our society in ways that will be hard to rein in because of the often self-reinforcing nature of machine learning.”

Many people seem to believe that decisions made by computers are inherently neutral, but when Tay screeched “race war now!!!” into the Twitterverse, it should have illustrated to everyone the threat of algorithmic prejudice. Without careful consideration of the data, the code, the coders, and how we monitor what emerges from “deep learning,” our technology can be just as racist, sexist, and xenophobic as we are.

Source: Racist in the Machine

For more on algorithmic bias, algorithmic exclusion, and data ethics, see this collection of links.

Psychological Safety

Dig into project-based and self-directed learning, and you’ll find psychological safety. Dig into privilege, and find psychological safety. Dig into voice and choice, and find psychological safety. Dig into creative teams, Employee Resource Groups (ERGs), and Employee Networks, 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.

I updated my post on Projects, Teams, and Psychological Safety with more resources, including a couple videos and quotes from a couple studies. Reflect on your career through the lens of psychological safety.

Performance terror. We’ve all known a classroom, meeting room or stage where we didn’t feel safe doing something we were quite capable of doing.

“As a college professor I encourage students to read their work aloud, but I never insist on it,” said Carey. “Sometimes those who are uncomfortable doing it will volunteer on their own because it’s their decision rather than mine.”

“I centered my instruction on the lives, histories and identities of my students. And I did all of this because I wanted my students to know that everyone around them was supporting them to be their best self,” said Simmons.

A supportive culture, sustained advisory relationships, and teaching strategies that create positive learning all promote psychological safety.

“Every child deserves an education that guarantees the safety to learn in the comfort of one’s own skin,” said Simmons.

Source: Psychological Safety: Key to Success at School and Work | Tom Vander Ark | Pulse | LinkedIn

Every child deserves an education that guarantees the safety to learn in the comfort of one’s own skin.

I centered my instruction on the lives, histories and identities of my students. And I did all of this because I wanted my students to know that everyone around them was supporting them to be their best self.

So while I could not control the instability of their homes, the uncertainty of their next meal, or the loud neighbors that kept them from sleep, I provided them with a loving classroom that made them feel proud of who they are, that made them know that they mattered.

There is a better way, one that doesn’t force kids of color into a double bind; a way for them to preserve their ties to their families, homes and communities; a way that teaches them to trust their instincts and to have faith in their own creative genius.

Source: Dena Simmons How students of color confront impostor syndrome – Ted Talk 2016 Ted com – YouTube

Further, Kahn argued that people are more likely to believe they will be given the benefit of the doubt—a defining characteristic of psychological safety—when relationships within a given group are characterized by trust and respect.

Source: Psychological Safety: The History, Renaissance, and Future of an Interpersonal Construct

Jonathan Mooney: “The Gift: LD/ADHD Reframed”

This fantastic talk is full of social model goodness. Highly recommended.

You don’t need somebody to fix you. You need somebody to fight for you, and with you.

The myth of normal is what’s broken.

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.

Mooney’s books Learning Outside The Lines: Two Ivy League Students with Learning Disabilities and ADHD Give You the Tools for Academic Success and Educational Revolution and The Short Bus: A Journey Beyond Normal are in my reading queue.

Inspiration Porn

Speechless did a great job addressing inspiration porn. Props. I updated Inspiration Porn, Growth Mindset, and Deficit Ideology with clips from and discussion about the show.

ABC’s “Speechless,” a sitcom about a family with a son who has a disability, tackled why it’s often offensive to call people with disabilities “inspirational.” And it’s done so, so well.

“Inspiration porn” is a term used to describe a common tendency in which able-bodied people condescend to those with disabilities by suggesting they are brave or special just for living. Ray DiMeo, a character in “Speechless” who is the younger brother of a teen with cerebral palsy, explained it perfectly in Wednesday night’s episode:

“It’s a portrayal of people with disabilities as one-dimensional saints who only exist to warm the hearts and open the minds of able-bodied people,” he said.

To which his brother, JJ, who has cerebral palsy, hilariously adds: “I blame Tiny Tim.”

While these sorts of simplistic attitudes may seem harmless, if misguided, they can have real consequences in a world where disabilities are stigmatized. Research even shows stigma can lead to damaging health care consequences.

What’s more, these kinds of portrayals render the person who is disabled as a side character only revered for what they provide to others.

Source: ‘Speechless’ Just Schooled Everyone On Disability ‘Inspiration Porn’ | The Huffington Post

My Gimpy Life

While discussing Speechless and the social model, I recalled this great web series from a few years ago.

The awkward adventures of a driven actress (Teal Sherer) trying to navigate Hollywood in a wheelchair.

https://www.youtube.com/user/MyGimpyLife

Pipelines, Privilege Economy, Contingency Economy, Post-employment Economy

I updated The Pipeline Problem and the Meritocracy Myth with selections from Sarah Kendzior’s The View From Flyover Country regarding the privilege economy, contingency economy, post-employment economy, and unpaid internships. This structural, systems thinking is necessary to confronting injustice and exclusion.

Creativity – as an expression of originality, experimentation, innovation – is not a viable product. It has been priced out into irrelevance – both by the professionalization of the industries that claim it, and the soaring cost of entry to those professions.

Today, creative industries are structured to minimize the diversity of their participants – economically, racially and ideologically. Credentialism, not creativity, is the passport to entry.

“What the artist was pretending he didn’t know is that money is the passport to success,” she writes. “We may be free beings, but we are constrained by an economic system rigged against us. What ladders we have, are being yanked away. Some of us will succeed. The possibility of success is used to call the majority of people failures.”

But creative people should not fear failure. Creative people should fear the prescribed path to success – its narrowness, its specificity, its reliance on wealth and elite approval. When success is a stranglehold, true freedom is failure. The freedom to fail is the freedom to innovate, to experiment, to challenge.

To “succeed” is to embody the definition of contemporary success: sanctioned, sanitized, solvent.

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

If you are 35 or younger – and quite often, older – the advice of the old economy does not apply to you. You live in the post-employment economy, where corporations have decided not to pay people. Profits are still high. The money is still there. But not for you. You will work without a pay rise, benefits, or job security. Survival is now a laudable aspiration.

In the post-employment economy, jobs are privileges, and the privileged have jobs.

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

Education is a luxury the minimum wage worker cannot afford. This message is passed on to their children.

Young Americans seeking full-time employment tend to find their options limited to two paths: one of low-status, low-paying temp jobs emblematic of poverty; another of high-status, low-paying temp jobs emblematic of wealth. America is not only a nation of temporary employees – the Walmart worker on a fixed-day contract, the immigrant struggling for a day’s pay in a makeshift “temp town” – but of temporary jobs: intern , adjunct , fellow.

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

In the post-employment economy, full-time jobs are parceled into low-wage contract labor, entry-level jobs turn into internships, salaries are paid in exposure, and dignity succumbs to desperation.

The problem in America is not that there are no jobs. It is that jobs are not paying. America is becoming a nation of zero-opportunity employers, in which certain occupations are locked into a terrible pay rate for no valid reason, and certain groups – minorities, the poor, and increasingly, the middle class – are locked out of professions because they cannot buy their way in.

During the recession, American companies found an effective new way to boost profits. It was called “not paying people”. “Not paying people” tends to be justified in two ways: a fake crisis (“Unfortunately, we can’t afford to pay you at this time…”) or a false promise (“Working for nearly nothing now will get you a good job later”).

In reality, profits are soaring and poorly compensated labor tends to lead to more poorly compensated labor. Zero opportunity employers are refusing to pay people because they can get away with it. The social contract does not apply to contract workers – and in 2013, that is increasingly what Americans are.

American ideology has long tilted between individualism and Calvinism. What happened to you was either supposed to be in your control – the “pull yourself up by your bootstraps” approach – or divinely arbitrated. You either jumped, or you were meant to fall. Claims you were pushed, or you were born so far down you could not climb up, were dismissed as excuses of the lazy. This is the way many saw their world before it collapsed.

They cut and blame us when we bleed.

When people are expected to work unpaid for the promise of work, the advantage goes to those immune from the hustle: the owners over the renters, the salaried over the contingent. Attempts to ensure stability and independence for citizens – such as affordable healthcare – are decried as government “charity” while corporate charity is proffered as a substitute for a living wage.

Faust’s is an inspiring tale – and one beyond the comprehension of most young graduates in America today. “Don’t trust the boomers!” warned Paul Campos in a 2012 article on the misguided advice the elder generation peddles to their underemployed, debt-ridden progeny – including gems like “higher education is always worth the price” and “internships lead to jobs” – and Faust’s rebuke proves him right. What is most remarkable about Faust’s career is not its culmination in the Harvard presidency, but the system of accessibility and opportunity that allowed her to pursue it. Her life story is a eulogy for an America long since past.

Participation in these programs and internships is often dependent on personal wealth, resulting in a system of privilege that replicates itself over generations. McArdle compares America’s eroded meritocracy to imperial China, noting that “the people entering journalism, or finance, or consulting, or any other ‘elite’ profession, are increasingly the children of the children of those who rocketed to prosperity through the post-war education system. A window that opened is closing”.

Mobility is but a memory. “The life prospects of an American are more dependent on the income and education of his parents than in almost any other advanced country for which there is data,” writes economist Joseph E Stiglitz in an editorial aptly titled “Equal Opportunity, Our National Myth”.

This is not to say that hard-working elites do not deserve their success, but that the greatest barrier to entry in many professions is financial, not intellectual.

The “lifetime of citizenship, opportunity, growth and change” Drew Gilpin Faust extolled is something most Americans desire. But it is affordable only for a select few: the baby boomers who can buy their children opportunities as the system they created screws the rest.

While the start and end dates of the millennial generation are up for debate – and the idea of inherent generational traits is dubious – people of this age group share an important quality. They have no adult experience in a functional economy.

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

It is one thing to discover, as an adult, that the rules have been rewritten, that the job market will not recover, that you will scramble to survive. It is another to raise a child knowing that no matter how hard they work, how talented they are, how big they dream, they will not have opportunities – because in the new economy, opportunities are bought, not earned. You know this, but you cannot tell this to a child. The millennial parent is always Santa, always a little bit of a liar.

The children of the millennials have been born into a United States of entrenched meritocracy – what Pierre Bourdieu called “the social alchemy that turns class privilege into merit”. Success is allegedly based on competition, not background, but one must be prepared to pay to play.

“This reliance on un- or underpaid labor is part of a broader move to a ‘privilege economy’ instead of a merit economy – where who you know and who pays your bills can be far more important than talent,” writes journalist Farai Chideya, noting that this system often locks out minorities.

By charging more for a year’s college tuition than the average median income, universities ensure that poor people stay poor while debt-ridden graduates join their ranks. By requiring unpaid internships, professions such as journalism ensure positions of influence will be filled only by those who can pay for them. The cycle of privilege and privation continues.

One after another, the occupations that shape American society are becoming impossible for all but the most elite to enter.

My father, the first person in his family to go to college, tries to tell me my degree has value. “Our family came here with nothing,” he says of my great-grandparents, who fled Poland a century ago. “Do you know how incredible it is that you did this, how proud they would be?” And my heart broke a little when he said that, because his illusion is so touching – so revealing of the values of his generation, and so alien to the experience of mine.

Source: The View From Flyover Country

Lean In and Deficit Ideology

Kendzior also writes about Lean In, which I’m working into a “Lean In and Deficit Ideology” post that will join my Structural Ideology > Deficit Ideology narrative.

The assumed divide between mothers who work inside and outside the home is presented as a war of priorities. But in an economy of high debt and sinking wages, nearly all mothers live on the edge. Choices made out of fear are not really choices. The illusion of choice is a way to blame mothers for an economic system rigged against them. There are no “mommy wars”, only money wars – and almost everyone is losing.

For the average married mother of small children, it is often cheaper to stay home – even if she would prefer to be in the workforce. It is hard to “lean in” when you are priced out.

Corporate feminists like Sheryl Sandberg frame female success as a matter of attitude. But it is really a matter of money – or the lack thereof. For all but the fortunate few, American motherhood is making sure you have enough lifeboats for your sinking ship. American motherhood is a cost-cutting, debt-dodging scramble somehow interpreted as a series of purposeful moves. American mothers are not “leaning in”. American mothers are not “opting out”. American mothers are barely hanging on.

Careers in this economy are not about choices. They are about structural constraints masquerading as choice. Being a mother is a structural constraint regardless of your economic position. Mothers pay a higher price in a collapsed economy, but that does not mean they should not demand change – both in institutions and perceptions.

The irony of American motherhood is that the politicians and corporations who hold power do have a choice in how they treat mothers and their children. Yet they act as if they are held hostage to intractable policies and market forces, excusing the incompetence and corporate malfeasance that drain our households dry. Mothers can emulate them and treat “choice” as an individual burden – or we can work together and push for accountability and reform. This option is not easy. But we are used to that.

Source: The View From Flyover Country