Diversity and Inclusion Recap #4

In this one:

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

Autism self-diagnosis, #SelfDxIsValid

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

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

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

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

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

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

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

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

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

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

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

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

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

Source: My thoughts on Self-Diagnosis | autisticzebra

Ally Skills

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

Guidelines for future ally work

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

Source: Ally Skills

Eugenics and deficit ideology

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

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

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

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

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

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

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

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

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

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

“Doing something” about autism

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

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

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

Networked protest, inclusion, and coalition building

Face blindness

I love cartoons. 🙂

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

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

4Chan, GamerGate, and lonely toxic masculinity

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

Reporting on trolls

Bathroom bills and controlling women’s bodies

Unique ways white women enact racism

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

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

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

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

Source: Unique Ways White Women Enact Racism – Medium

ASL syntax and injustice

Agency and institutions

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

Mental health and policing

Hierarchical ableism

Accountable activism

Racism + ableism

Addiction and injustice

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

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

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

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

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

Disability in America

“You don’t matter.”

“You’re not worth it.”

“You’re not a person.”

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

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

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

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

Getting older in tech, life long learning

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

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

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

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

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

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

Source: On Getting Old(er) in Tech

Design thinking and exclusion

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

DESIGN THINKING HAS AN EXCLUSION PROBLEM

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

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

ACT FAST—THEN KEEP ITERATING

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

“APPROACHES, NOT SOLUTIONS”

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

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

Unpacking the “common sense” of bathroom bills

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

Programming and prejudice

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

Technical Majority and Tech Forward

Her Story

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

Blog for inclusion

Civil rights data

Race in architecture

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

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

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

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

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

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

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

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

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

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

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

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

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

Domestic violence, stress cases, and personas

Mental health and stigma

Dyslexia and tech

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

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

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

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

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

Ethics in algorithms

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

Aro, ace, cishet, and allosexual

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

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

Exponential growth devours and corrupts

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Source: Exponential growth devours and corrupts

Identity, tribe, and voice

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

Intersectionally exhausted

A week as a woman

Respectful collection of data

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

Source: Respectful Collection of Demographic Data – SheNomads – Medium

Interaction badges

I added this interaction badge spotting to my Interaction Badgespost.

Low-functioning and high-functioning labels

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

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

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

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

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

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

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

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

Autism and LGBTQIA intersectionality

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

The ableism of #EndofDisability

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

Representation in online gaming

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

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

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

Uber

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

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

Source: Reflecting on Susan Fowler’s Reflections – Medium

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

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

The Gift: LD/ADHD Reframed

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

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

  • agent > patient
  • identity > diagnosis

Challenge our definition of where disability lies.

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

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

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

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

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

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

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

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

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

Difficult children make interesting adults.

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

We have conflated reading with intelligence.

We’ve left so many brains out.

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

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

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

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

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

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

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

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

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

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

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

Consistently cultivate the language of high expectations.

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

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

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

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

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

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

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

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

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

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

Accommodate, and change the environment.

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

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

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

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

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

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

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

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

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

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

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

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

More than ever the world rewards specialist knowledge.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Learning Outside the Lines

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

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

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

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

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

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

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

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

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

Neurodiversity and Cognition Representation

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

From our D&I statement:

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

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

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

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

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

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

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

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

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

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

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

Source: Neurodiversity: Some Basic Terms & Definitions

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

Source: Steve Silberman recommends the best books on Autism

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

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

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

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

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

Source: Autism and the Pathology Paradigm

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

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