Diversity & Inclusion Recap #5

In this issue:

  • Autistic empathy and the mind-blindness of everyday people
  • Accessible consumerism and #FoodieAbleism
  • Decolonize science
  • Disability and in-class testing
  • #OwnVoices #CripLit
  • Disability journalism
  • #AutisticWhileBlack
  • Toxic autism awareness
  • Autism Awareness Month
  • Autism puzzle piece
  • Let them stim
  • Corporate D&I
  • Guys and bots
  • #NotSpecialNeeds
  • Trans women “male privilege”
  • Autism discovery
  • Autism representation
  • AP stylebook on gender-neutral pronouns
  • Ableism, unintentional inaccessibility, rights-based supports, universal design
  • Newsroom diversity
  • Wheelchair-bound
  • Disability and dress codes
  • Autism mom
  • Toxic Masculinity, Predatory Men, and Male Paralysis
  • Ableist gates
  • Ableist attendance policies
  • Event accessibility information
  • Analyzing inspiration porn
  • Prove your disability
  • #ThePricePWDPay, #CripTax, and #AcademicAbleism
  • Trans Broken Arm Syndrome
  • Blaming autism
  • Race and racism in the Middle Ages
  • Autism and Moonlight
  • Neuroscience and self-esteem
  • Ableist kink and relationship anarchy
  • Disability shouldn’t define you
  • Tech spreads hate
  • Inclusive work culture
  • Majorities and edge cases
  • Designing for color blindness
  • The Mask You Live In – an exploration of American Masculinity
  • Acute and chronic
  • Backstopping
  • Meritocracy myth
  • Transgender census
  • Online safety guides
  • Resisting exclusion
  • Sensory overload
  • End the awkward
  • Wheelchair flow in NYC
  • Burnt Out: Experiences of Women on the Autism Spectrum
  • Spoons, poverty, and disability
  • #Chronicloaf #FilmDis
  • Racism + capitalism + ableism + education + the violence of the security state
  • Social/medical model misery calculator
  • Data bias
  • Presentation accessibility and comic sans

Autistic empathy and the mind-blindness of everyday people

What I saw in these students instead was hypersensitivity – painful hypersensitivity that caused them to be persistently confused and disoriented about their surroundings and the people around them. It wasn’t that they didn’t care or weren’t empathic; not at all. It was that life was too loud and too intense, full of static and confusion (this idea would soon be called the Intense World theory of autism, see Markram, Rinaldi, & Markram, 2007).

My students were incredibly sensitive to everything around them: sounds (especially very quiet sounds that other people can ignore), colors and patterns, vibrations, scents, the wind, movement (their own and that of the people around them), the feeling of their clothing, the sound of their own hair and their breathing, food, touch, animals, social space, social behavior, electronics, numbers, the movement of traffic, the movement of trees and birds, ideas, music, juxtapositions between voice and body movements, the bizarre, emotion-masking behaviors of “regular” people (oh man, how I empathize)… and many of these students were struggling to stand upright in turbulent and unmanageable currents of incoming stimuli that could not be managed or organized.

These autistic students were overwhelmingly and intensely hyper-empathic – not merely in relation to emotions and social cues, but to nearly every aspect of their sensory environments. Their social issues arose not from a lack of empathy, but from an overpowering surplus of it. I knew what that was like.

I had not landed in a world of aliens; I had dropped right into a community of fellow hyper-empaths who became my friends.

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

Accessible consumerism and #FoodieAbleism

I need every restaurant and gas station in America to have straws, preferably plastic and bendy. My son, a 10-year-old boy with Down syndrome, has never quite mastered that complex series of motions to drink consistently from the lip of the cup. What he can do, though, is curl his tongue around a straw and create appropriate suction to drink, which was quite the triumph when he first learned it. A whole world of easy hydration opened to us. My family is not alone. Straws are a wildly successful example of assistive technology for millions of people with diverse abilities, all of whom are best served by ubiquitous straws. If Grenier gets people to stop sucking, what about my son?

There’s a deep tension between environmental consumerism and accessible consumerism. Many disabled people have come to rely on prepackaged foods, single-serving products, plastic cups, and yes, straws. On the other hand, there are those in the environmental movement who use shame to push people toward better individual decisions for the environment. Last year, a Twitter user named Nathalie Gordon posted a picture of plastic wrapped pre-peeled oranges, taunting: “If only nature would find a way to cover these oranges so we didn’t need to waste so much plastic on them.” It rapidly went viral and today has over 100,000 retweets and likes.

But for many disabled people, these pre-peeled oranges were wonderful.

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

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

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

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

Decolonize science

Yes your work has a political program: white supremacy.  And in order to work towards one that respects & works with the everyone’s humanity in mind you must work to become a historically competent scientist.  Its time for us to examine the values and political relations in our lives and around us and envision better ones that aren’t based on colonial ideas about gender, race, sexuality, age, ability, etc..

Source: We Need Decolonial Scientists | Decolonize ALL The Things

Disability and in-class testing

I’ve been inching away from the blue book for years, but it’s time to go cold turkey and match my praxis to my principles. Whatever pedagogical gains the in-class test might bring – and I’ll argue they are few and increasingly less relevant – I can no longer justify forcing people with disabilities to disclose their conditions in order to receive basic test-related accommodations.

Not only do students have to disclose disability to their professors —who are no more immune to ableism than to any other sort of bias — but the most common form of accommodation extends the disclosure to classmates. Many students with invisible disabilities (such as anxiety disorders or ADHD) require quiet rooms and extra time to work on a test. I’m thrilled to provide both. On the other hand, when the whole class gathers to take an exam, with one student conspicuously absent, everyone notices.

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

#OwnVoices #CripLit

Use it for whatever marginalized/diverse identity you want (I personally like the WNDB definition) and for whatever genre, category, or form of art you want. As long as the protagonist and the author share a marginalized identity.

Source: #ownvoices

Disability journalism

Research shows journalists routinely fail to interview disabled people; the humanity of victims is erased from the discourse about such cases; and news outlets often imply that murders of disabled people by caregivers are “justified” or “mercy killings.”

We found it when we saw that in 2015, not a single journalist who reported on one of these stories reached out to a disabled person, let alone the professional experts within the disability rights community. Journalists don’t talk to disabled people.

In the disability rights community, we tend to pass around the worst of the articles. And the worst of the articles are really bad. But I was quite interested in the places where it was clear journalists went into reporting on a murder and were trying to do it in a neutral kind of way, and they still didn’t follow the best practices of “Journalism 101.” Being thoughtful about where you get your reaction quotes: If you get a highly prejudicial quote from one side, try to balance it out on the other side. If you hear a defense attorney put forth a theory on why a crime happened or why a crime didn’t happen, remember that they’re a defense attorney and be really thoughtful about how you use that quote. Really kind of basic stuff. Not in the worst of the cases, not in the worst of the articles, not in the cases where the journalist affirmed a “mercy killing” narrative, which is where I see the really awful examples, but in really pretty OK, kind of neutral reporting, still not following best practices. And as a journalist, that was really useful for me to see, especially to see it 50, 60, 70 times, again and again as a real pattern.

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

#AutisticWhileBlack

Toxic autism awareness

Our autism awareness campaigns of recent years have indeed made everyone aware of autism, but that public awareness does not match the facts. In fact, in many regards, John Q. Public is only aware enough of autism so as to be toxic to actually autistic people. This is serious. The definition of toxic by Merriam-Webster is “containing or being poisonous material especially when capable of causing serious injury or death.”

Today it seems socially acceptable to blame the evil behaviors of criminals on autism and reprehensible behaviors of politicians on mental illness. Don’t buy into this societally acceptable behavior. To buy into it is to perpetuate it. Each time you do so you are drawing that line between us darker, deeper and wider inviting fear to take up residence, distancing yourself from autistics and/or people mental illness, making us “those people,” the ones othered. In turn we are feared. Remember, people in power can do strange things when they are afraid. Is this the kind of world you want your children to grow up in?

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

Autism Awareness Month

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

Autism puzzle piece

Let them stim

Corporate D&I

When people feel comfortable sharing their perspectives, diversity can be a competitive advantage; but you can’t have true diversity of perspective without visible diversity. If you’re visibly different from the person sitting next to you, those differences will have played a part in shaping previous interactions and experiences for both of you. As a result, you’ll approach solving problems differently, and together, you’ll make better decisions that don’t give undue privilege to one perspective. Visible diversity is a strong proxy for diversity of perspective.

Source: Monzo – Diversity and Inclusion at Monzo

Guys and bots

Even though many people see “guys” as a harmless, genderless word, not everybody does. You can think of the opposite word to guys (for example: gals or girls) and wonder if a group of men would feel comfortable being referred to as girls. When someone refers to you using a word that you don’t identify with, it’s easy to feel excluded from conversation or misidentified.

This little bot is a small way we can bake in our values, culture, and practices into a communication tool we use every day.

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

#NotSpecialNeeds

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

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

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

Also, peruse the #NotSpecialNeeds and #SayTheWord hashtags.

I incorporated the video and article above into my post on The Segregation of Special. Check it out for more disability and neurodiversity perspective on “Special Needs”.

Let’s stop using the word Special. It is tired and hack and in the way of inclusion.

Trans women “male privilege”

Even those of us who spend years in relative comfort with our gender are socialized in a vastly more complex way than Adichie posits. When she says that we are “treated as male by the world,” that’s partly true, but ignores the other ways trans people are treated in Western society: as mentally disturbed fetish objects Hollywood can mine for cheap material. Small wonder I was never able to get rid of that sense of wrongness; it was always being reinforced by the world around me. This comic by Sophie Labelleillustrates (heh) the problem with movies like, say, Ace Ventura: Pet Detective, or The Hangover 2, or any number of other movies where the idea of transness is played for shock and/or laughs. Whether you know you’re trans or not, society has many ways of making sure you know the consequences of straying outside your prescribed gender.

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

Autism discovery

I relate to this tale of autism self-discovery.

The discovery of my Asperger’s/autism spectrum status was eerily similar for me, except for the “frightening world” part (the world into which I awoke is colorful, peaceful, comforting, nurturing, supportive, validating, connected, and loving). This was only made possible by the loving, supportive, and comforting people and blogs I found early on, however. Otherwise, despite an increased understanding, the world might have become an even colder, pricklier place.

Like Neo in “The Matrix”, I, too, realized the truth about the world, the truth about my role and my place in it, and indeed….who I really was. I realized that my own interaction with-and responses to-the world were based on an illusion of my own: the illusion that I was neurotypical and the accompanying assumption that I “should”, then, be like the “rest of the world”.

I, too, realized that my life up until that moment had indeed been lived under false pretenses.

And in a way, I have to retrace my steps and make a correction to something I said above-the part about the “frightening world”. To be clear, it’s not the world of the Asperger’s/autism spectrum that I found frightening. I actually find the Asperger’s/autism spectrum world infinitely more peaceful and comforting. Rather, it’s the general world at large that eventually has some changing to do. Inclusion and accommodation benefit everyone.

The “rest of the” world became a bit more frightening to me. Not the anxiety-inducing kind…more of the appalling, disgusted kind. Suddenly, I had given myself permission to view the world through a raw and honest lens, and it revealed itself to be one of irrationality, obnoxiousness, boorishness, confusion, rash judgments, and harsh criticism. I gave my permission to be honest with myself about what I saw, and what I saw was unpleasant.

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

Autism representation

Representation matters.

So when I found out that Julia was making the leap to television, I didn’t want to get too excited. But the new videos, released in preparation for her network debut in April, give me tentative hope. In particular, the videos demonstrate care and attention to showing non-autistic kids how to interact kindly with autistic friends and classmates - something that could make the new generation of little Sarahs a lot less isolated, anxious, and unhappy. That’s why watching Abby and Julia singing together makes me weep. My heart’s breaking for what could have been if this kind of programming had existed when I was growing up, but it’s also growing three sizes over the thought that it might not happen again in the future.

Whether Big Bird is learning that Julia didn’t mean to offend him when she didn’t acknowledge him right away, Elmo is using his stuffed animal to initiate a game with Julia and her bunny, or Abby is learning to interact and play with her on terms that work for both girls, there’s a distinct focus on learning to socialize with autistic people in these segments that’s been missing from most autism-related media so far. For many non-autistic kids, this will be the first time that they’ve seen autistic kids as equal human beings whose differences can be celebrated instead of shunned. For autistic kids, this isn’t just the first time they’ll be able to see someone like themselves on screen-it might be the first time they’ve ever seen anyone like them treasured by their peers. The inclusion of interactions like this in one of the most influential and beloved children’s television programs of all times has the power to change what happens in classrooms and on playgrounds across the world.

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

AP stylebook on gender-neutral pronouns

Ableism, unintentional inaccessibility, rights-based supports, universal design

Thread on ableism and unintentional inaccessibility that touches on rights-based supports and universal design. Relevant to flash talks and GMs.

Ableism threads

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

Variability and identity first

A specific manifestation of the argument that one autistic person cannot represent their community applies when considering the perspective of those people on the autism spectrum who don’t easily advocate for themselves. This includes people with intellectual disability and those who are non-speaking or who have extremely limited vocabulary. A great deal of autism research is focused on understanding and providing support specifically to those individuals, their families and their allies. How can we capture their opinions and filter those into our research?

A glib answer is to say that we should ask them. Of course this is true. We could all work harder to find effective ways to understand those autistic people who do not use traditional modes of communication. But this is a massive endeavour, and one in which I think we have only recently begun to make progress. In the meantime, I argue, talking to Autistic self-advocates and representatives of autistic-led organisations is a good starting place.

This isn’t to say that other perspectives should not also be taken into account. Parents, siblings, and people who provide professional support to people on the autism spectrum have a clear role to play. They can be proxy-advocates, with intimate knowledge of the likes and dislikes, strengths and needs of their loved ones. Furthermore, when developing new ways to provide support to autistic people, it is likely that parents and professionals will be involved in the delivery of those supports. Thus, we need to engage with these groups in their own right, as stakeholders in the design and outcomes of research.

BUT we are missng the point if we think doing so can replace engagement with autistic people themselves. Autistic people can elucidate aspects of the autistic experience which are common to many – what does it feel like to flap or stim? what does it feel like to be prevented from doing so? More than that however, I struggle to understand how anyone can claim to care about people with autism and intellectual disability if they don’t also respect people with autism and no intellectual disability. There is an interesting and important conversation to be had about how to better represent the voices of non-speaking autistics. We cannot begin to have this conversation if we don’t first demonstrate our respect for the wider neurodivergent community by listening to their voices, and amplifying them.

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

Ableism, exclusion, and intersectionality

Newsroom diversity

Liz Spayd, the public editor of The New York Times, wrote an excellent piece noting that of the paper’s 20-plus political reporters during 2016, two were black, and none were Latino, Asian, or Native American. Susan Page of USA Todayresponded within minutes of my sending an initial email to say that the paper’s core political staff consisted of 10 women and eight men; and among those, two Latinos and one African-American. Their level of candor is both refreshing and rare. So far, several other news organizations have promised numbers but are still in the process of delivering.

So I’m going to put this out there for everyone to see. I’m looking for metrics on the racial and gender diversity of newsroom political teams-notes on how to share yours are below-and for us to self-report because it’s the right thing to do. We should not be ashamed by these numbers, whatever they are, but we should be deeply ashamed if we hide them.

Why write about diversity in newsrooms now?

Arguably, 2016 was the most racially contentious and gender-fraught election of the modern era. This election required extraordinary things of journalists. Sometimes we lived up to the challenge; but in many other ways, we missed the mark. When it comes to the diversity of our political reporting teams, it seems we can’t even find out what the mark is, because despite our proclaimed love affair with data, we won’t disclose our own.

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

Wheelchair-bound

Disability and dress codes

Autism mom

On the term “autism mom” and centering parents.

Toxic Masculinity, Predatory Men, and Male Paralysis

I work hard to practice what I preach and feel I make contributions small and even large to a kinder and more compassionate world - a world in which women and children need not ever fear men.

But even the best men walk in the wake of the worst men have given this world - the worst men continue to give to this world, and the females and children who must suffer for that.

Each man must moment by moment examine how he is culpable, where and how he stands in this world in relationship to females and children.

The dilemma of navigating the world as a man is couched in the unearned privilege, the potential for an abuse of unearned power that shouts out “First, do no harm.”

Source: Toxic Masculinity, Predatory Men, and Male Paralysis

Ableist gates

Ableist attendance policies

Event accessibility information

Thread on providing accessibility information for events.

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

Analyzing inspiration porn

This thread analyzes an inspiration porn meme.

Prove your disability

#ThePricePWDPay, #CripTax, and #AcademicAbleism

Trans Broken Arm Syndrome

Would a licensed medical doctor with years of training really be unsure of what to do with a broken arm just because it was attached to a transgender person?

That’s the simple question at the heart of a complex issue dubbed “Trans Broken Arm Syndrome.” The term was coined by Naith Payton at British LGBT site Pink Newson July 9 to describe when “healthcare providers assume that all medical issues are a result of a person being trans. Everything – from mental health problems to, yes, broken arms.”

This phenomenon is just one of many difficulties transgender people face when seeking healthcare. Even for something as common as a cold, trans people frequently don’t receive appropriate medical care due to a combination of under-educated physicians, insurance coverage denials, and fear of discrimination.

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

Blaming autism

Anthony Corona died after being placed with his head between his legs for twelve minutes. In the aftermath, the coronor at least partially blamed autism for his death.

I’m looking for the actual report, but this trend of blaming a diagnosis, rather than the violence visited on the disabled body, is both pernicious and pervasive. This kind of restraint is lethal far too often to far too many people, and in the aftermath, medical and law enforcement authorities fixate on the disability rather than the action (even should the action be justified). See both Ethan Saylor and Eric Garner for widely publicized examples.

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

Race and racism in the Middle Ages

A lot of the excellent new work that has been done on race and racism in the Middle Ages-both in this series and also within academia-focuses either on telling the stories of people of color in the Middle Ages, or understanding how the racial categorizations of people of color came to be. But whiteness, as a racial category, was also under construction during this period. In medieval Britain, there was a centuries-long dispute over who had the right to feel British.

Over the course of the Middle Ages, ‘Britishness’-the right to claim British identity-became racial property. I call this racial identity a ‘property’ (an idea I’m taking from Cheryl I. Harris) to emphasize its status as an object of political power. Like real estate, Britishness in the Middle Ages became a thing to be owned. And it had value. By appropriating the anti-imperialist ideas of the very peoples they had subjugated, English writers represented themselves as the heroes of their political history.

Source: Feeling ‘British’ | The Public Medievalist

Autism and Moonlight

Everyone is human. Everyone is mundane. We are all just mundane in our own specific ways

“It’s not about homosexuality at all. It’s about what happens to you when you can’t love anybody. It doesn’t make a difference if you can’t love a woman or if you can’t love a man”).

For the autistic viewer, I Am Not Your Negro should serve as a strong reminder of the importance of self advocacy.

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

Neuroscience and self-esteem

Mindset marketing is not support.

Ableist kink and relationship anarchy

Disability shouldn’t define you

Tech spreads hate

One the monetization of hate.

On a website owned by white nationalist leader Richard Spencer, Ellis saw an ad for his engineering company, Optics for Hire, pop up on the screen – even though he had never knowingly bought the ad.

What Ellis had stumbled on was a little-known facet of the booming world of Internet advertising. Businesses using the latest in online advertising technology offered by Google, Yahoo and major competitors are also increasingly finding their ads placed alongside politically extreme and derogatory content.

That’s because the ad networks offered by Google, Yahoo and others can display ads on vast numbers of third-party websites based on people’s search and browsing histories. Although the strategy gives advertisers an unprecedented ability to reach customers who fit a narrow profile, it dramatically curtails their ability to control where their advertisements appear.

“No one has any idea where their ads are going,” said Ellis. In some cases, he added, ad networks “are monetizing hate.”

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

Inclusive work culture

In 2013, I wrote a lengthy rant about culture in tech workplaces. It was a symptom of larger problems I was experiencing at the time-I was a woman of color drowning in a tech bro’s paradise. Constant rumors and bullying caused people to form cliques; alcohol was the only escape most employees had from the hostility. It was impossible for me to be productive, and I wanted to understand why.

The only answer was culture. I couldn’t change culture at this company, so I wrote about it then left as soon as possible. Nonetheless, the experience stayed with me. How do companies, I continued to wonder, design workplace cultures that retain employees? I spent the next few years learning from my time at other companies. Now, I would like to share some of those learnings with you.

Recently, “culture” has become a buzzword in tech. Free beer, ping pong tables, and other material perks such as endless snacks and sleeping rooms are often paraded as reasons for prospective employees to join. I was swayed by these kinds of benefits at a few points in my career. Each time, I found myself burned out, overworked, and undervalued after the honeymoon period passed.

Fancy offices and alcohol-laden parties, it appears, can’t replace a lack of direction. Organizational culture is about more than materialism.

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

Majorities and edge cases

The Googles, Facebooks, and Twitters were conceived as services for all. And yet, they were unsurprisingly born prioritizing the needs of their creators: primarily able, young, white American men. While many of these companies are trying to march to a more inclusive tune, much of Silicon Valley still designs exclusively for that particular American man. The rest of us are an edge case, someone to deal with after the “majority,” and only if it’s convenient for this said “majority.”

If you design with a white male majority in mind, the math is easy. Inconvenience the fewest number of people, allow an escape hatch for emergencies. But what happens when someone we consider an edge case actually receives a rape threat?

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

Designing for color blindness

The Mask You Live In – an exploration of American Masculinity

On the harm of “be a man”.

Acute and chronic

Backstopping

Backstopping is by nature a form of back-up support. It’s a tricky balance of recognizing that a potential crisis is arising and then giving me a chance to deal with it before stepping in to help or offer support.

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

Meritocracy myth

Thread.

The Pipeline Problem and the Meritocracy Myth

Transgender census

Online safety guides

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

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

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

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

Resisting exclusion

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

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

Sensory overload

End the awkward

Wheelchair flow in NYC

Burnt Out: Experiences of Women on the Autism Spectrum

Successful to Burnt Out features women who’ve considered ourselves successful in our primary role. We’ve had to slow down or stop working. Some of us didn’t know why life became exponentially harder. Why we had burnt out. We realised our limitations and finally put names to them. Anxiety. Depression. Late in life, we found out it was also from being on the Autism Spectrum. How have we dealt with being a shell of what we once were? How did we go from being successful to burnt out? Where are we now in life’s journey?

Abianac, Karletta; Abbott, Lorraine; Isaacs, Kathy; Eartharcher, Laina; Marxon, Liz (2017-04-02). Successful to Burnt Out: Experiences of Women on the Autism Spectrum (I’ve been there too Darl Book 1) (Kindle Locations 30-34). Self Published. Kindle Edition.

Spoons, poverty, and disability

Thread.

#Chronicloaf #FilmDis

Racism + capitalism + ableism + education + the violence of the security state

Social/medical model misery calculator

One of the first things I wrote on my blog that came straight out of my head, and wasn’t a commentary on something else, was an idea I called the Misery Calculator.

It grew out my attempt to more fully understand one of the core ideas of disability culture … that the suffering in disability comes from ableism and external barriers, not from our disabilities themselves. I accepted this for years. Yet, I always found that there were some aspects of my actual disabilities that were hard to live with, and couldn’t be blamed on anything or anyone else but my own physical condition. When I got into disability blogging, I found others in the disability community, particularly “chronically ill” people and “spoonies,” who seemed to have the same experience, somewhere between the Medical and Social Models of disability. A perfectly accessible, non-ableist world would be a lot better in a thousand ways, but at least some of our disabilities would still be there, causing at least some amount of misery.

So I came up with six measures of “misery” associated with disabilities. Three of them are basically “medical,” existing in your own body, and three are “social,” factors that exist in the world outside of yourself. For this post, I’ve tweaked the categories and definitions a little, but they’re basically the same. I’ve also decided to change the name of the thing to Disability Calculator. Here are the measures, roughly defined:

Medical

Pain / Illness
How much do you hurt and / or feel like garbage?

Stamina / “Spoons”
How much energy do you have to do things?

Physical & Mental Functioning
How well or poorly is your body and / or mind operating?

Social

Physical Barriers
How often are you blocked or inconvenienced by physical barriers?

Lack Of Tools & Supports
To what degree do you have or lack the tools and supports you need, and do they work right?

Ableism
How much does disability prejudice deprive you of opportunities and / or add to your stress?

This corresponds to the Medical Model / Social Model idea. The six point set of measures, divided into two broad categories, allow you to get a feel for how much each “model” really describes your disability experience. You also get a 0 to 30 point measure of how much overall disability you experience, both Medical and Social.

Source: Misery Calculator: Reheated, Renamed — Disability Thinking

Data bias

Presentation accessibility and comic sans

The day my sister, Jessica, discovered Comic Sans, her entire world changed. She’s dyslexic and struggled through school until she was finally diagnosed in her early twenties, enabling her to build up a personal set of tools for navigating the written world.

“For me, being able to use Comic Sans is similar to a mobility aid, or a visual aid, or a hearing aid,” she tells me while we’re both visiting our family in Maryland. “I have other ways of writing and reading, but they’re not like they are for someone who’s not dyslexic.”

Source: Hating Comic Sans Is Ableist – The Establishment

Navigating Autism Acceptance Month

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

This video explains what’s wrong with Autism Speaks.

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

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

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

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

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

#ActuallyAutistic

#REDinstead

#AutismAcceptanceMonth

#BoycottAutismSpeaks

#AreYouAwareOfMeNow

#NothingAboutUsWithoutUs

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

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

Diversity and Inclusion Recap #4

In this one:

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

Autism self-diagnosis, #SelfDxIsValid

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

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

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

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

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

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

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

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

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

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

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

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

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

Source: My thoughts on Self-Diagnosis | autisticzebra

Ally Skills

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

Guidelines for future ally work

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

Source: Ally Skills

Eugenics and deficit ideology

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

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

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

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

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

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

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

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

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

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

“Doing something” about autism

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

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

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

Networked protest, inclusion, and coalition building

Face blindness

I love cartoons. 🙂

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

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

4Chan, GamerGate, and lonely toxic masculinity

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

Reporting on trolls

Bathroom bills and controlling women’s bodies

Unique ways white women enact racism

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

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

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

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

Source: Unique Ways White Women Enact Racism – Medium

ASL syntax and injustice

Agency and institutions

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

Mental health and policing

Hierarchical ableism

Accountable activism

Racism + ableism

Addiction and injustice

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

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

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

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

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

Disability in America

“You don’t matter.”

“You’re not worth it.”

“You’re not a person.”

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

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

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

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

Getting older in tech, life long learning

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

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

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

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

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

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

Source: On Getting Old(er) in Tech

Design thinking and exclusion

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

DESIGN THINKING HAS AN EXCLUSION PROBLEM

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

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

ACT FAST—THEN KEEP ITERATING

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

“APPROACHES, NOT SOLUTIONS”

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

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

Unpacking the “common sense” of bathroom bills

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

Programming and prejudice

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

Technical Majority and Tech Forward

Her Story

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

Blog for inclusion

Civil rights data

Race in architecture

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

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

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

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

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

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

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

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

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

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

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

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

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

Domestic violence, stress cases, and personas

Mental health and stigma

Dyslexia and tech

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

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

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

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

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

Ethics in algorithms

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

Aro, ace, cishet, and allosexual

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

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

Exponential growth devours and corrupts

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Source: Exponential growth devours and corrupts

Identity, tribe, and voice

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

Intersectionally exhausted

A week as a woman

Respectful collection of data

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

Source: Respectful Collection of Demographic Data – SheNomads – Medium

Interaction badges

I added this interaction badge spotting to my Interaction Badgespost.

Low-functioning and high-functioning labels

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

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

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

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

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

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

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

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

Autism and LGBTQIA intersectionality

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

The ableism of #EndofDisability

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

Representation in online gaming

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

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

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

Uber

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

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

Source: Reflecting on Susan Fowler’s Reflections – Medium

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

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

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 inclusive systems is “acceptance over awareness”.

Awareness focuses on deficits and made up ideas of normal. Awareness reinforces the deficit and medical models. Awareness is inspiration porn and the “ableist autism warrior parent” archetype. Awareness is the segregation of special.

Acceptance, however, is universal design, valuing whole people, and inclusion. Acceptance is structural change to ableist, exclusionary systems. Acceptance is the social model for minds and bodies. Acceptance is neurological curb cuts and generative neurological pluralism. There is no path to acceptance and inclusion that does not involve a direct confrontation with injustice.

Yet another awareness campaign is not acceptance, far from it.

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