Acceptance > Awareness

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

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

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

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

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

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

Source: Autism Awareness and Autism Acceptance • Ollibean

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

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

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

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

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

Source: Universal Design and Disability Acceptance • Ollibean

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

All this comes attached with the Autism Awareness Month reminder.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Acceptance says: Support, include everyone!

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

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

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

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

Because some Autistics already experience acceptance and they are thriving.

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

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

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

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

Awareness is not respect.

Awareness does not help.

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

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

“Acceptance is an action.”

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

Source: Autism Acceptance Month

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

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

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

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

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

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

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

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

Source: Thank You Ed Roberts

Awareness is people talking to you.

Acceptance is people respecting you.

Awareness is that high-pitched, baby voice.

Acceptance is speaking in a normal tone.

Awareness is being invited to the table.

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

Awareness is acknowledging that you have autism.

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

Awareness is doing science.

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

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

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

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

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

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

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

That is such a ridiculous argument.

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

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

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

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

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

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

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

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

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

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

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

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

Diversity & Inclusion Recap #2

In this issue,

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

Trans Autistic

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

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

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

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

I also added this selection.

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

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

Medical model flow

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

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

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

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

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

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

Embrace the obsession

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

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

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

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

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

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

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

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

Designing with mental health in mind

With great examples of designing for real life.

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

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

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

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

My autistic operating system particularly relates to this:

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

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

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

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

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

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

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

Minority Media

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

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

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

Source: The year of minority media » Nieman Journalism Lab

Psychological safety in the age of Trump

Disability in the age of Trump

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

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

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

Written communication as social equalizer

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

Written communication is the great social equalizer.

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

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

Getting online was revolutionary and may have saved my life.

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

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

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

Hidden disability

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

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

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

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

I added this to Hidden Disability.

Sensory Regulation, Sensory Diet

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

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

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

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

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

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

Biased design

A biased, unethical design choice.

Design, Engineering, Skills, and Social Justice

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

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

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

Source: Programs – Girls Garage

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

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

Self segregation

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

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

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

Source: Why America is Self-Segregating

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

Empathy Gap and Critical Distance

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

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

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

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

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

Source: Sociology: Understanding a Diverse Society

Racial Wealth Gap

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

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

Get structural.

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

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

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

Inspiration Porn

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

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

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

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

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

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

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

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

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

Bias at Work

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

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

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

Accessibility for Real Life

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

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

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

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

Culture, Autonomy, Communication, Diversity and Inclusion

Five important things.

Culture and Autonomy

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

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

Source: 2016 Year Review

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

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

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

Source: Project-based Learning and School Culture

Communication is Oxygen

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

That’s a lot of writing.

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

Source: Writing in Education and Plain Text Flow

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

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

Diversity and Inclusion

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

Diversity & Inclusion Recap #1

Diversity & Inclusion Recap #1

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

Design for Humanity

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

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

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

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

Harm reduction

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

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

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

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

Survivorship Bias and Harassment

Thread on survivorship bias in tech.

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

Source: Survivorship bias – Wikipedia

Autism disclosure and professional life

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

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

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

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

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

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

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

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

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

Desistence, Gender Dysphoria, and Neurodiversity

Thread on desistence and gender dysphoria.

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

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

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

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

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

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

Source: Blaming trans identities on autism hurts everyone | autisticality

Ableist autism parents

This thread offers #ActuallyAutistic perspective on ableist autism parents.

And here’s an in joke.

Accessibility

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

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

Algorithmic Bias

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

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

Source: Racist in the Machine

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

Psychological Safety

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The myth of normal is what’s broken.

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

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

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

Inspiration Porn

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

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

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

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

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

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

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

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

My Gimpy Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

They cut and blame us when we bleed.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Source: The View From Flyover Country

Lean In and Deficit Ideology

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

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

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

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

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

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

Source: The View From Flyover Country

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

 

 

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

‘Don’t underestimate the power of giving people a common platform and operating language.’

Source: What Google Learned From Its Quest to Build the Perfect Team – The New York Times

Don’t mistake that common platform for a locked-down, top-down LMS. Don’t mistake it for shrinkwrap, cargo cult culture bought from a corporation whose business model is the deficit model. We’re not talking ed tech, we’re talking indie ed-tech–the real, promethean stuff.

For his part, in that Stanford talk, Jim Groom pointed to 80s indie punk as a source of inspiration for indie ed-tech. “Why 1980s indie punk?” Groom explains,

First and foremost because I dig it. But secondly it provides an interesting parallel for what we might consider Indie Edtech. Indie punk represents a staunchly independent, iconoclastic, and DIY approach to music which encompasses many of the principles we aspired to when creating open, accessible networks for teaching and learning at [the University of Mary Washington]. Make it open source, cheap, and true alternatives [sic] to the pre-packaged learning management systems that had hijacked innovation.

The LMS is our major record label. Prepackaged software. A prepackaged sound.

Source: ‘I Love My Label’: Resisting the Pre-Packaged Sound in Ed-Tech

The Basics of Open Technology

Albemarle County SchoolsSeven Pathways uses open technology informed by toolbelt theory and universal design for learning. Their Basics of Open Technology is a good primer on how to do tech in the classroom right. This is compatible with neurodiversity, the social model of disability, and structural ideology.

The promise of contemporary technology lives in what these tools can do that previous learning and educational technologies could not — they are open, connected, individualizable, and flexible. But if your school adopts these new technologies without adopting the policies and practices that take advantage of these differences, you have likely defeated your students before you’ve even begun.

  • Student Control
  • An Abundance of Tools
  • Accessibility
  • Access Everywhere
  • BYOD and an Open Network
  • Talk to Parents
  • Worry About Behavior, Not Technology
  • Spend Wisely
  • Trust in Children and Childhood

Their philosophy emphasizes assistive tech and helping kids find their voice through technology.

No student will have mechanical limitations in access to either information or communication — whether through disability, inability at this moment, or even just discomfort. Learning is our goal, and we make it accessible.

Source: The Basics of Open Technology | Edutopia

No child within the Albemarle County Public Schools should need a label or prescription in order to access the tools of learning or environments they need. Within the constraints of other laws (in particular, copyright) we will offer alternative representations of information, multiple tools, and a variety of instructional strategies to provide access for all learners to acquire lifelong learning competencies and the knowledge and skills specified in curricular standards. We will create classroom cultures that fully embrace differentiation of instruction, student work, and assessment based upon individual learners’ needs and capabilities. We will apply contemporary learning science to create accessible entry points for all students in our learning environments; and which support students in learning how to make technology choices to overcome disabilities and inabilities, and to leverage preferences and capabilities.

Source: Seven Pathways

Follow superintendent Pam Moran and technology innovation director Ira Socol on Twitter, and read their blogs.

And check out their educational technology plan.

The Open Schoolhouse

Charlie Reisinger (@charlie3) is a good resource on the open schoolhouse, open learning, service learning, 1:1 laptop programs, student help desks, and WordPress in education. In his school district, Penn Manor, student IT apprentices write code, write documentation, image laptops, and provide helpdesk support. Their code and docs are open source and available on GitHub.

Here are some videos on Penn Manor’s approach to the open schoolhouse.

Mr. Reisinger poses the vitally important question, “Which side of the command line should our kids be on?”

His book  The Open Schoolhouse is out now. Here are some excerpts.

Locked-down technology is a symptom of an education system designed for student compliance and defined by the incessant measurement of learning. A factory-like school system values what a student has purportedly learned on a linear path, as demonstrated by a standardized test score. Technology device restraints and restrictions lock students on the assessment assembly line, at the cost of a child’s curiosity and intellectual freedom.

Source: How leveraging open source solutions helps give students in-demand skills | Opensource.com

Given unfettered permission to revise, remix, and redistribute curriculum material, teachers are trusted to become active agents in the creation of high-quality learning materials.

At Penn Manor School District in Lancaster County, Pennsylvania, Linux and open source software are the foundations for more than 4000 student laptops, classroom computers, and district servers. We’ve saved hundreds of thousands of dollars by going open source in both the server room and the classroom.

To #GoOpenSource means more than simple cost savings for underfunded schools. Like openly-licensed education material, open source values invite collaborative and participatory learning. When a school culture honors learning by doing, students become active agents in their education, and they contribute to the school community in innovative new ways.

Source:  Schools that #GoOpen should #GoOpenSource

I think of Moodle and WordPress as fraternal twins. Passionate and ingenious founders with ardent beliefs in free and open source software created both software platforms. Global communities of programmers, designers, and end users drive the development of both platforms. They use similar web technologies (LAMP), and subscribe to principles of simplicity and ease of use. They are credited with creating, and disrupting, entire industries. And they made dramatic impacts on our students, teachers, and staff.

There is also a deeper ethical problem: reliance on closed source proprietary software teaches students a lesson of dependence on secret technology they are powerless to examine, study, share, and improve upon. If the social mission of schools is to amplify student potential, disseminate knowledge, and prepare students to have an impact on the world, then schools have a duty to help kids be free thinkers and self-reliant architects of their futures.

Source: Reisinger, Charlie (2016-09-29). The Open Schoolhouse: Building a Technology Program to Transform Learning and Empower Students. Kindle Edition.

For more selections from the book, see here.

Hacker Ethos

It’s a software-eaten world; get hip to coding and the hacker ethos.

The credentialist social order has been waning since peak centralization in the 1970s. Work and the world are shifting from credentialist to hacker modes of social organization. Agile teams, distributed collaboration, and the hacker ethos of flexible improvisation and rapid iteration are useful cultural literacy. The edtech cronyism of the past 15 years– driven by greed, assessment, bad metrics, and algorithmic cruelty–is a culture ill-suited to collaboration. Software eats industries and networks eat geography, bringing collaborative hacker culture along with them. Education’s turn is now. If you’re going to get eaten by software,  choose indie ed tech over corporatist ed tech and deficit model greed. Engage the digital commons and educate for massive software-driven change. When navigatating the society transforming tidal wave of automation, fluency in the hacker ethos, distributed collaboration, and loosely coupled, tightly aligned teams is very helpful.

In fact, a core element of the hacker ethos is the belief that being open to possibilities and embracing uncertainty is necessary for the actual future to unfold in positive ways. Or as computing pioneer Alan Kay put it, inventing the future is easier than predicting it.

Source: Towards a Mass Flourishing

In our Tale of Two Computers, the parent is a four-century-old computer whose basic architecture was laid down in the zero-sum mercantile age. It runs on paperware, credentialism, and exhaustive territorial claims that completely carve up the world with strongly regulated boundaries. Its structure is based on hierarchically arranged container-like organizations, ranging from families to nations. In this order of things, there is no natural place for a free frontier. Ideally, there is a place for everything, and everything is in its place. It is a computer designed for stability, within which innovation is a bug rather than a feature.

We’ll call this planet-scale computer the geographic world.

The child is a young, half-century old computer whose basic architecture was laid down during the Cold War. It runs on software, the hacker ethos, and soft networks that wire up the planet in ever-richer, non-exclusive, non-zero-sum ways. Its structure is based on streams like Twitter: open, non-hierarchical flows of real-time information from multiple overlapping networks. In this order of things, everything from banal household gadgets to space probes becomes part of a frontier for ceaseless innovation through bricolage. It is a computer designed for rapid, disorderly and serendipitous evolution, within which innovation, far from being a bug, is the primary feature.

We’ll call this planet-scale computer the networked world.

The networked world is not new. It is at least as old as the oldest trade routes, which have been spreading subversive ideas alongside valuable commodities throughout history. What is new is its growing ability to dominate the geographic world. The story of software eating the world is the also the story of networks eating geography.

There are two major subplots to this story. The first subplot is about bits dominating atoms. The second subplot is about the rise of a new culture of problem-solving.

Source: A Tale of Two Computers

Teams

In Silicon Valley, software engineers are encouraged to work together, in part because studies show that groups tend to innovate faster, see mistakes more quickly and find better solutions to problems. Studies also show that people working in teams tend to achieve better results and report higher job satisfaction. In a 2015 study, executives said that profitability increases when workers are persuaded to collaborate more. Within companies and conglomerates, as well as in government agencies and schools, teams are now the fundamental unit of organization. If a company wants to outstrip its competitors, it needs to influence not only how people work but also how they work together.

As the researchers studied the groups, however, they noticed two behaviors that all the good teams generally shared. First, on the good teams, members spoke in roughly the same proportion, a phenomenon the researchers referred to as ‘‘equality in distribution of conversational turn-taking.’’ On some teams, everyone spoke during each task; on others, leadership shifted among teammates from assignment to assignment. But in each case, by the end of the day, everyone had spoken roughly the same amount. ‘‘As long as everyone got a chance to talk, the team did well,’’ Woolley said. ‘‘But if only one person or a small group spoke all the time, the collective intelligence declined.’’

Second, the good teams all had high ‘‘average social sensitivity’’ — a fancy way of saying they were skilled at intuiting how others felt based on their tone of voice, their expressions and other nonverbal cues. One of the easiest ways to gauge social sensitivity is to show someone photos of people’s eyes and ask him or her to describe what the people are thinking or feeling — an exam known as the Reading the Mind in the Eyes test. People on the more successful teams in Woolley’s experiment scored above average on the Reading the Mind in the Eyes test. They seemed to know when someone was feeling upset or left out. People on the ineffective teams, in contrast, scored below average. They seemed, as a group, to have less sensitivity toward their colleagues.

In the best teams, members listen to one another and show sensitivity to feelings and needs.

Google, in other words, in its race to build the perfect team, has perhaps unintentionally demonstrated the usefulness of imperfection and done what Silicon Valley does best: figure out how to create psychological safety faster, better and in more productive ways.

Source: What Google Learned From Its Quest to Build the Perfect Team – The New York Times

Build projects around motivated individuals. Give them the environment and support they need, and trust them to get the job done.

The best architectures, requirements, and designs emerge from self-organizing teams.

Source: Principles behind the Agile Manifesto

To build 21st Century learning from the ground up, we look to see how companies like Google, Spotify, and GE build their innovative cultures. Their secret to innovation? Agile. Where focused teams unleash creativity, adapt through fast learning cycles, and iterate towards success.

Agile Classrooms self-organizes its own learning, uses visual accountability structures, and are immersed in reflective feedback. It is a structured learning environment that restores the freedom to teach and learn. Where students reclaim responsibility for their own learning and teachers shift into facilitators and coaches.

Source: Agile Classrooms

For more on teams, see my posts on Agile and Scrum in Education and Projects, Teams, and Psychological Safety.

Team Communication

My company uses Slack & hundreds of WordPress blogs running P2 to communicate & collaborate. Our three level communication stack is sympathetic to anxiety and imposter syndrome and informed by neurodiversity. We’ve been iterating on this for over a decade, and I think we get some things right. You can take an idea from small audiences to global audiences with feedback and encouragement along the way.

See P2 in action on the sites at make.wordpress.org.

For an example of using Slack for team chat, join the WordPress Slack. It’s open to anyone in the world. Come look around and lurk as the software running 26% of the web is built.

An open source alternative to Slack used by some districts is Mattermost. Penn Manor moved to Mattermost in 2016. Mattermost derives is name from the importance of communication. Communication is oxygen.

WordPress for School Districts

Newark is a large school district using WordPress for internal and external communication. @camworld of SchoolPresser  built and manages the 70+ WP sites at the Newark district. This podcast talks to him about moving Newark over to WordPress. He gets into nuts and bolts and case study, including cost model.

See his talk on WordPress for Schools at WordCamp Raleigh (slides).

There are thousands of so-called widgets, plugins and themes that are just as important for a one-person blogger than the world’s largest publishers. Gartner’s recent pace-layered application strategy shows that organisations can accelerate their innovation by choosing an array of systems that support business requirements on long-, medium- and short-term timescales.

Systems that maximise connectivity between the pace layers offer organisations competitive advantage. WordPress’ ubiquity has driven it to enjoy a rich ecosystem of connectivity and integration, something that the baked-in WordPress REST API now extends that connectivity infinitely. This is why things will accelerate in 2017.

Source: How WordPress Ate The Internet in 2016… And The World in 2017

High school, college, and sometimes even middle school students help make WordPress. Shipping to an authentic audience is powerful and life changing.

wordpress-download-counter

Backchannels

Ditch That Textbook provides examples of how to use blogs and team chat in the classroom. Chapter 3, Use Technology to Defeat Insecurity, offers good insight into the neurodiversity friendliness of backchannels, something familiar to tech workers.

A backchannel is a separate, often text-based, discussion students engage in while they’re receiving information via a lecture, a movie, a television show, or a PowerPoint presentation. Students use a digital device to participate in a behind-the-scenes chat so as not to disturb others trying to listen.

Backchannels provide the perfect outlet for students who have something to say but refuse to open up in class discussions. When everyone participates in the conversation, no one feels singled out. As a result, inhibitions about sharing decrease and the courage to speak up increases. Plus, when everyone types at once, the teacher spends less time calling on students one by one.

 I personally believe that the backchannel is the greatest unharnessed resource that we as educators have available to us. It does not threaten me nor bother me that you learned as much if not more from the backchannel the other night — in fact, it makes me feel great that I facilitated the connection.

Source: Cool Cat Teacher Blog: Backchannels and Microblogging Streams

And that’s not even touching on the ways this kind of technology supports the shy user, the user with speech issues, the user having trouble with the English Language, the user who’d rather be able to think through and even edit a statement or question before asking it.

Source: SpeEdChange: Bringing the “Back Channel” Forward

Written communication is the great social equalizer.

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

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

Getting online was revolutionary and may have saved my life.

The difference between offline and online communication could not have been more dramatic.

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

IT Culture

To accommodate continuous communication, collaboration and iteration, change the culture of IT acquisition & digital services. Consult the 18F & USDS playbooks.

The goal was simple: burst the stereotypical beltway bubble and expose government employees and bureaucratic workflows to mainstream technology thinking.

Source: The difference between 18F and USDS – Ben Balter

Members of Congress of all stripes and party affiliations are embracing the game-changing promise of better government technology shipped by the modern approach employed by hundreds of hardworking people serving their country at 18F and USDS. Same goes for the career bureaucracy, to varying degrees. And it appears that, at least under oath and the klieg lights, the private-sector vendor community grudgingly does too.

The culture change 18F and USDS embody is starting to take hold, challenging the mindset of entrenched for-profit IT vendors, attacking the billions wasted each year on busted IT, and putting the status quo on notice.

Source: Doing IT Right: Congressional Oversight of President Obama’s Signature Tech Teams – Medium

I was in a meeting once where someone said, “How long will it take to fix that?” One person, who’d been at the company for years, said, “Three months.” A new person, who’d just come from a world of rapidly provisioned cloud microservices, said, “Three minutes.” They were both correct. That’s how change enters into this world. Slowly at first, then on the front page of Hacker News.

Source: What is code? Code has been my life, and it has been your life, too. It is time to understand how it all works.

Adopting the USDS and 18F playbooks will inoculate against edtech cronyism.

Schools do continue to turn away from the iPad as the tablet hasn’t proven to be quite as revolutionary as some predicted. Surprise, surprise. But the rationale for choosing a certain type of computing device is almost always about testing, not about any other benefit the device might offer teaching and learning.

But this notion of an “OS War” shouldn’t be too quickly dismissed. “Apple, Microsoft, Amazon and Google Are Fighting a War for the Classroom,” Edutechnica wrote in June, with a look at how many colleges have adopted their competing “pseudo-LMSes.” The “war” extends beyond the productivity suite of tech tools and it extends beyond operating system in the classroom. It’s about building brand allegiance with students and/as workers, and it’s about building data profiles to sell ads and other products.

The LMS, of course, needn’t be a permanent line item in schools’ budgets. And its supposed primacy might actually overlook that there’s a great deal of “shadow” technology utilized by instructors who eschew the official LMS for something they find better suited to their classroom needs and goals.

The learning management system is a piece of “enterprise” software after all. That is, it’s built and bought to satisfy the needs of the institution rather than the needs of individual. Purchasing an LMS – or more correctly, signing a contract to license an LMS – requires its own enterprise-level bureaucracy.

I’ve argued elsewhere that education technology serves as a “Trojan horse” of sorts, carrying with it into public institutions the practices, politics, and a culture of private business and the ideology of Silicon Valley.

Of course, what drives the programming on Sesame Street now isn’t education research; it’s market research. It isn’t “equity” as in social justice; it’s “equity” as in the financial stake a VC takes in a company.

And that’s what “the business of education technology” gets us.

Source: The Business of Education Technology

There is a gap developing between the business users of enterprise applications and the IT professionals charged with providing these applications. The business leaders are looking for modern, easy-to-use applications that can be quickly deployed to solve a specific problem or respond to a market opportunity. Meanwhile, the IT organization is typically working toward a strategic goal of standardizing on a limited set of comprehensive application suites in order to minimize integration issues, maximize security and reduce IT costs. These competing goals often lead to strategic misalignment.

Business users often complain that, no matter what they ask for, IT tells them either that they have to use the functionality in the existing application portfolio or that they have to wait until the current multiyear rollout is finished before the problem can be addressed. In today’s dynamic business climate, with constantly changing business models and users who are fully aware of the power of technology, this is simply an unacceptable answer.

Organizations must establish a new strategy for business applications that responds to the desire of the business to use technology to establish sustainable differentiation and drive innovative new processes, while providing a secure and cost-effective environment to support core business processes.

Source: Accelerating Innovation by Adopting a Pace-Layered Application Strategy

Writing in the Age of Distributed Collaboration

As a hacker and writer, I spend a lot of time in text editors. Almost everything I write starts in my favorite text editor. A text editor is my thinking space. My notes are not just a record of my thinking process, they are my thinking process. Iteration and ideation happen in my editor, in plain text.

At my company, we say “communication is oxygen”. Most of that oxygen is writing. So far this week, we’ve written 99,786 Slack messages, 1,749 P2 posts, and 5,070 P2 comments using our three level communication flow.

iterate-communicate-make-happy.png
We Iterate, We Communicate, We Make People Happy
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793 Slack channels, 441 P2 blogs, 4,628 Zoom video chats

 

Source: Writing in Education and Plain Text Flow

Literacy in North America has historically been focused on reading, not writing; consumption, not production.

while many parents worked hard to ensure their children were regular readers, they rarely pushed them to become regular writers.

We are now a global culture of avid writers.

As Brandt notes, reading and writing have become blended: “People read in order to generate writing; we read from the posture of the writer; we write to other people who write.” Or as Francesca Coppa, a professor who studies the enormous fan fiction community, explains to me, “It’s like the Bloomsbury Group in the early twentieth century, where everybody is a writer and everybody is an audience. They were all writers who were reading each other’s stuff, and then writing about that, too.”

So how is all this writing changing our cognitive behavior?

• • • For one, it can help clarify our thinking. Professional writers have long described the way that the act of writing forces them to distill their vague notions into clear ideas. By putting half-formed thoughts on the page, we externalize them and are able to evaluate them much more objectively. This is why writers often find that it’s only when they start writing that they figure out what they want to say.

Poets famously report this sensation. “I do not sit down at my desk to put into verse something that is already clear in my mind,” Cecil Day-Lewis wrote of his poetic compositions. “If it were clear in my mind, I should have no incentive or need to write about it. . . . We do not write in order to be understood; we write in order to understand.”

Culturally, we revere the Rodin ideal— the belief that genius breakthroughs come from our gray matter alone. The physicist Richard Feynman once got into an argument about this with the historian Charles Weiner. Feynman understood the extended mind; he knew that writing his equations and ideas on paper was crucial to his thought. But when Weiner looked over a pile of Feynman’s notebooks, he called them a wonderful “record of his day-to-day work.” No, no, Feynman replied testily. They weren’t a record of his thinking process. They were his thinking process.

Before the Internet came along, most people rarely wrote anything at all for pleasure or intellectual satisfaction after graduating from high school or college.

The explosion of online writing has a second aspect that is even more important than the first, though: it’s almost always done for an audience.

When you write something online— whether it’s a one-sentence status update, a comment on someone’s photo, or a thousand-word post— you’re doing it with the expectation that someone might read it, even if you’re doing it anonymously. Audiences clarify the mind even more.

Blogging forces you to write down your arguments and assumptions. This is the single biggest reason to do it, and I think it alone makes it worth it. You have a lot of opinions. I’m sure some of them you hold strongly.

When you move from your head to “paper,” a lot of the hand-waveyness goes away and you are left to really defend your position to yourself.

But studies have found that particularly when it comes to analytic or critical thought, the effort of communicating to someone else forces you to think more precisely, make deeper connections, and learn more.

When asked to write for a real audience of students in another country, students write essays that are substantially longer and have better organization and content than when they’re writing for their teacher. When asked to contribute to a wiki— a space that’s highly public and where the audience can respond by deleting or changing your words— college students snap to attention, writing more formally and including more sources to back up their work.

“Often they’re handing in these short essays without any citations, but with Wikipedia they suddenly were staying up to two a.m. honing and rewriting the entries and carefully sourcing everything,” she tells me. The reason, the students explained to her, was that their audience— the Wikipedia community— was quite gimlet eyed and critical.

Once thinking is public, connections take over.

Source: Thompson, Clive (2013-09-12). Smarter Than You Think: How Technology Is Changing Our Minds for the Better (p. 50). Penguin Publishing Group. Kindle Edition.

Iterate Together; do_action

do_action events bring non-profits and open source communities together to build and improve websites. Let’s do the same for school districts. Students, teachers, and tech workers iterating and learning together as they build the infrastructure for oxygen.

http://doaction.org/

Privacy

For practical advice without the FUD, consult the Smart Girl’s Guide to Online Privacy by @violetblue and this overview on privacy and passwords.

Neurodiversity, The Social Model of Disability, and Structural Ideology

All of this must be informed by neurodiversitythe social model of disability, and structural ideology. We are responsible for humanizing flow in the systems we inhabit. Apply these rules of thumb.

With software eating the world, we must make it humane.

Marc Andreessen famously said that “software is eating the world”, but it’s far more accurate to say that the neoliberal values of software tycoons are eating the world.

Source: There is no “technology industry” – Humane Tech – Medium

The inequalities that I’ve chronicled above – income inequality, wealth inequality, information inequality – have been part of our education system for generations, and these are now being hard-coded into our education technologies. This is apparent in every topic in every article I’ve written in this years’ year-end series: for-profit higher education, surveillance in the classroom, and so on.

These inequalities are apparent in the longstanding biases that are found in standardized testing, for example, often proxies for “are you rich?” and “are you white?” and “are you male?”

My own concerns about the direction of education technology cannot be separated from my concerns with digital technologies more broadly. I’ve written repeatedly about the ideologies of Silicon Valley: neoliberalism, libertarianism, imperialism, late stage capitalism. These ideologies permeate education technology too, as often the same investors and same entrepreneurs and the same engineers are involved.

Source: Top Ed-Tech Trends of 2016: Education Technology and Inequality

Future Digital Humanitarians

Given agency and a default to open culture, students can become the digital humanitarians society needs.

Students can design, create, and engineer effective solutions to problems. Powerful new technologies are allowing students to create and disseminate solutions to real life problems like never before. Interestingly, it is the power of the human experience – empathy, relationships, opportunities to improve, and a sense that what they do has meaning and matters – that is the key to true and purposeful changemaking for kids. How exciting to think about where these young digital humanitarians might take these skills, understandings, and mindsets in the future!

Source: Empathy: The Surprising Secret Sauce For Authentic STEM Project Design

Video Playlists

Open education playlist:

Neurodiversity playlist:

Autistic Burnout: The Cost of Coping and Passing

Being a “high-functioning” autistic or having high-functioning depression or anxiety means being doubted and having your identity questioned. Exhausting efforts to pass and mask are given little credit—sometimes tossed aside with an “I do that too”—and held against you in those moments of burnout when you can longer pass, mask, and cope. Ableist tropes regarding hidden disability are the reward for passing.

Autistic burnout, it permeates every area of your life.

Burnout can happen to anyone at any age, because of the expectation to look neurotypical, to not stim, to be as non-autistic as possible.

Being something that neurologically you are not is exhausting.

Source: Ask an Autistic #3 – What is Autistic Burnout? – YouTube

Then, life got harder each day because of the effort needed to pull off the passing in order to maintain. But, it was also wonderful to not have to constantly worry at the grocery store. It is hard to grocery shop when you live in poverty because generally the more healthy the food the more it costs. It means you can have a few healthy things, but not enough to really have an overall healthy diet. I enjoy eating healthy.

But here is the rub – even though I now look “normal” even though I am autistic, it is too exhausting to maintain. I am noticing across my life that whenever I learned a new skill, the bar was set higher and I was, from that point forward, expected to always have that skill available and to use it even if using the skill depleted ongoing large amounts of personal resources.

In my life, because I have been able to learn new skills with the result of looking more neurotypical, I have dug a hole for myself that I cannot now get out of as the bar of expectation for me to look/act “normal” has been raised. I am currently passing in public so well that people often can no longer tell by looking that I am autistic.

I know in the field of autism we have made it our goal to get autistics to look neurotypical as we hold that as the prized norm. Many people congratulate themselves when it happens. I am here to tell you (just as countless others from my tribe have done) that this may NOT wind up to be a good thing for autistic people.

Once we appear “normal” we are expected to always appear normal. To do so comes at a great expense. Ultimately, for me, passing as “normal” means that I am now a fake person, never able to be myself without putting my ability to make a living in jeopardy. Because I am close to retirement age I am hoping I will make it.

Source: ‘Autistic Burnout’ by Judy Endow, MSW

Often a period of autistic regression begins during or after puberty or during the transition to adulthood (late teens to early twenties). Mid-life is also a common time for autistic people to experience burnout or regression. In fact, many people (including me) list a noticeable change in their ability to cope with daily life as one of the reasons for seeking a diagnosis. However, autistic regression can happen at any age and is often preceded by a major life change or a period of increased stress.

A better analogy than regression is that of the demands of life exceeding a person’s resources.

Imagine a hot summer day in a city. Everyone turns on their fans and air conditioners to beat the afternoon heat, exceeding the ability of the power grid to supply power to all of the homes and businesses in the city. To cope, the electric company might implement a brownout–an intentional reduction of power to each building–or a series of rolling blackouts in which some locations get full power while others get none.

The autistic brain seems to work much the same way when faced with excess demands on resources. There are days or weeks or months when the demands of life are too great and our brains decide to implement a brownout or a rolling black out. Some coping skills or abilities are temporarily taken offline or run at reduced efficiency.

Many of the challenges that come with being autistic are pervasive, meaning they’re with us forever. Even if they aren’t active at all times, they still exist and may reappear when a particular coping strategy gets temporarily taken offline because the brain needs to reallocate resources for a more urgent task.

When this happens, an issue that was previously “fixed” can suddenly appear to be “broken” again.

In fact, nothing has been fixed or broken. We simply have very fluid coping strategies that need to be continuously tweaked and balanced. Because a child or adult goes through a period of having very few meltdowns, that doesn’t mean they’ll never have meltdowns again. If something in their life changes, for example the hormonal storms of puberty, they’ll need to develop new coping strategies. And until they do, they may begin having meltdowns due to the mental, emotional or sensory overload caused by the new development.

Being autistic means a lifetime of fluid adaptation. We get a handle on something, develop coping strategies, adapt and we’re good. If life changes, we many need some time to readapt. Find the new pattern. Figure out the rules. Test out strategies to see what works. In the mean time, other things may fall apart. We lose skills. We struggle to cope with things that had previously been doable under more predictable conditions. This is not regression to an earlier developmental stage, it’s a process of adapting to new challenges and it’s one that we do across a lifetime of being autistic.

Source: Autistic Regression and Fluid Adaptation | Musings of an Aspie

I’ve been thinking a lot about how my ability to mask and camouflage has really taken a nose-dive in the past years. I used to be better at this — or so I tend to think. Surely, there must be a reason — other than rank ignorance and denial — for why I’ve been under the autistic radar for so long… and why when I was younger and thought about “acting out” to get attention, my efforts were usually immediately curtailed by something inside me that says, “No – wait – don’t do that.”

I’ve had a sort of internal thermostat that’s regulated the “temperature” of my autistic tendencies, which modulated them in public.

But in the past years, I’ve noticed a sharp decline in my ability to mask and camouflage my markedly autistic behavior (in public, not privately).  And I realize I’m acting a helluva lot more autistic now, than I did in my earlier adulthood.

So, we pull inward more and more… and more and more… try to reach out more and more … more and more… and while the rest of the world is overlooking ignoring our pain and stress (because we’re so social), inside, we feel like we’re dying. Suffering, struggling… unable to escape that vicious cycle.

Source: Who has the energy? Of #autism and masking and failing to fit in – Aspie Under Your Radar

For twelve or more hours per day, for years, I had been trying to pass for neurotypical without realizing I had been doing so. I had exhausted myself in the process. I never thought much of it at the time. Until it happened again.

About four years ago, I was enjoying a fairly leisurely life of working part time from home. I had been working from home doing freelance work for a few years. I didn’t have a spouse or children. My life wasn’t particularly stressful compared to most peoples’.

I just didn’t feel like doing anything. I had no ambition at all, almost all of a sudden. I didn’t feel like talking to the few friends I usually kept in touch with. I didn’t feel like going to the places I used to like to go. I wasn’t sad or anxious. I just felt like I had shut down. It lasted for a while, and people became concerned about me.

For seven months, I didn’t leave the house. I had started ordering my groceries online. I didn’t have any reason to go anywhere. I wasn’t agoraphobic or afraid to leave my apartment. I just didn’t feel like it. My mother became concerned that I was severely depressed, but I didn’t feel depressed. I had been depressed in the past, and this didn’t feel the same. I couldn’t articulate why this was different than depression, but I knew in my heart that it was. This was something else.

I take inventories of the things I do each day and how those things affect me. It dawned on me the other day that the main reason I do this is because I don’t want to experience burnout again. As much as I try to avoid meltdowns, because my meltdowns can be scary, I also try to avoid longterm shutdowns that might cause me to lose my job (which I can’t afford to lose). I have to be able to function, and I try to maintain my functioning by not wasting too much energy on things that can be let go. Whenever I slip back into focusing too much of my energy on the wrong things, I start to feel burnt out again.

Source: Burnout | aspified

“Aspie burnout” is a colloquial term, that the clinical world doesn’t seem to acknowledge as a genuine part of the autistic spectrum, resulting from the attempts to “be normal”, fit in and keep up. Here, I think it is very useful to draw peoples’ attention to Christine Miserandino’s ‘spoon theory’: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ because when I read it, I saw such immense parallels with living with Asperger’s/autism. It can creep up on you, it can hit any time, but for sure, most Aspies will have experienced Aspie burnout by the time they hit 35.

Basically, the higher functioning you are, the more others expect of you and also, the more you push yourself. You have an invisible disability, you look normal and have no apparent physical difference. So why can’t you behave and carry on like everyone else? Sure, everyone gets tired, sure they also can get burnout from pushing themselves too hard. But the difference is this: we get it from just existing in a neurotypical world, a world that doesn’t accept our differences or make allowances for them. Mental health issues such as anxiety and depression are greater in high-functioning autistics, because of trying to fit in and finding it so difficult. Because we are acutely aware of our differences and our failings, but we are just as affected by them as lower-functioning autistics. So we kind of have the rawest deal.

When you hit burnout, you can take a long time to recover.  Even one stressful day, for someone on the spectrum can mean days or even longer, of hiding away to recover afterwards.  So imagine what impact it has if you try day after day to continue living at a level, which to others is ordinary but to you is a massive challenge.  And once you burnout, your coping capacity is diminished.  That means, even when you recover, if it happens again, it can happen quicker and take less to provoke it.

Suzanne C. Lawton refers to Aspie burnout as The Asperger Middle-Age Burnout in her book Asperger Syndrome: Natural Steps Toward a Better Life. On page 33 it says:

“She had noted this same behavior and attributed it to adrenal exhaustion from years of pumping out high levels of epinephrine from prolonged severe anxiety. Not only were these AS people dealing with their regular levels of anxiety, but they were also working extremely hard to maintain a façade of normalcy.”

Source: Aspie Burnout | Planet Autism Blog

I have been undiagnosed for most of my life so have subconsciously tried to hide or push through my autistic characteristics to fit in to the point where I physically and mentally could not do it any more, but surely we should be protecting young autistic people from the same fate?

We cannot be ‘cured’ only, by an extreme effort of will, suppressed. We should be teaching young autistic people to know their limits. It should not be celebrated that autistic people can act neurotypical, especially as we do not know the recovery time that this effort requires and do not have accommodations in the ‘established’ society to allow this healing to take place.

Source: Long-term Burnout – A Little Off the Mark

In autistic burnout we come to the end of our resources that enable us to act as if we are not autistic in order to meet the demands of the world around us. For me these demands have included things like being able to raise my children and maintain employment. I have gone through a few distinct periods of burnout and have successfully managed them by withdrawing from the world as best I could while carrying on daily commitments to children and to employment.

Then, autistic burnout began to rear up again. I thought I knew just how to navigate the burnout. At least I knew to slow down, pull back from social engagements and increase sensory regulation time and modalities. In the past these things had been helpful and allowed me to get back in sync after a few months, thus being able to venture back out into the life I wanted. Not this time.

I am thinking the combination of autistic burnout along with aging has made this episode quite different than the other times burnout has been problematic. For almost a year now, I have been experiencing somewhat of a burnout, but the difference is that I am not able to get past it like I have previously.

Over the months I’ve ramped up my sensory regulation. I am now spending about four hours per day devoted to keeping myself regulated. Some of the things I do include swimming, walking, bike riding, massage, and absolute quiet. In the past all of these things worked well. Now all of these things just sort of work. It means that no matter how much I do I never feel completely regulated.

Source: Autistic Burnout and Aging • Ollibean

I think one thing that may be different about a person on the spectrum going through burnout, is they may have learned a social facade that can be carried into periods when they are horribly stressed.

Observing others through my career, most are not able to disguise this kind of distress, and they often do not receive the same demands that the hardworking dedicated worker with hidden distress receives.

Source: KATiE MiA/Aghogday: Burnout on the Autism Spectrum

Burnout, long-term shutdown, or whatever you want to call it, happens generally when you have been doing much more than you should be doing. Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.

The danger here may be obvious: It may be the people most capable of passing for normal, the most obvious “success stories” in the eyes of non-autistic people (some of whom became so adept at passing that they were never considered autistic in the first place), who are the most likely to burn out the hardest and suddenly need to either act in very conspicuously autistic ways or die.

To the outside world, this can look as if a forty-year-old perfectly normal person suddenly starts acting like a very stereotypically autistic person, and they can believe that this is a sudden change rather than a cumulative burnout eventually resulting in a complete inability to function in any way that looks remotely normal. The outside world is not used to things like this, and the autistic person might not be either. They might look for the sudden onset of a neurological disorder, or for psychological causes, and receive inappropriate “treatments” for both of these, when really all that has happened is massive and total burnout.

This can also look much less spectacular, or be much more gradual, and it can happen in any autistic person. Sometimes, with more supports or a change in pace or environment, the skills lost come back partially or totally. Sometimes the loss in skills appears to be permanent — but even that can be somewhat deceptive, because sometimes it is simply that the person can no longer push themselves far beyond what their original capacity was in the first place.

Sometimes this kind of burnout is what leads adults to seek diagnosis and services. Unfortunately, many service systems that would otherwise support people in their own homes, cater only to people who were diagnosed in childhood, and will look at someone with a very good neurotypical-looking track record of jobs, marriages, and children with suspicion. They need to be made more aware of this possibility, because there’s a high chance that an adult in this situation could end up jobless, homeless, institutionalized, misdiagnosed, given inappropriate medical treatment, or dead.

People training autistic children to look more normal or refusing to tell their children they are autistic also need to be aware of this possibility, because this is the potential end result ten, twenty, thirty, or forty years down the road. This is one of the biggest reasons for teaching us to learn and grow as ourselves, accounting for our strengths and weaknesses rather than as counterfeit neurotypicals.

Source: Help! I Seem to be Getting More Autistic!” ARTICLE

In summary Autistic Burnout is an accumulation of years of trying to appear normal and cope as an Neurotypical (NT). The strain and drain of it suddenly becomes too much and an autistic person (me in this case) falls apart. All autistic symptoms get worse. Trying to manage all the every day normal activities are way too much. It is overwhelming and stressful for the person involved.

Source: Autism, Motherhood and Advocacy.: Autistic Burnout

My description of an inability to cope with overload might sound familiar if you read my post about meltdowns. That’s because it is similar. In fact, I’d say that burnout is a type of meltdown – one that occurs over a much longer timescale. It fits the same niche: it’s my brain’s last resort, an extreme emotional release as a result of overload. But it’s a response to a chronic energy debt, instead of an acute one.

Burnout eventually does have the intended effect – it stops the overload. Because it stops my ability to function at all, which handily includes my ability to go to school or work or do the things that were draining my energy faster than I could replenish it. Just like a meltdown forces me to get out of whatever situation was acutely overloading me.

It’s difficult to explain the concept of limited energy to people who haven’t experienced it. It’s even more difficult to explain when I actually have functioned with a full-time occupation before. If I now say I’m unable to do that, it either seems like I’m flat-out lying, or like I’m deliberately ‘disabling’ myself by limiting what I can do. But neither of those is the case. I never knew that most people don’t feel overwhelmed and overloaded all the time. I did know that most people don’t have mental health breakdowns like clockwork every few years – but I didn’t know why that happened to me and not others. Maybe most significantly, I didn’t know that energy limits existed, let alone that the idea could explain my experiences.

Now that I do know those things, I’m not lying about my past or trying to make myself worse off than I am. I’m finally being honest, to myself, about my own abilities. If that looks like I’m limited myself, it’s only because I’ve pushed myself way too hard for my whole life until now. It might look like I now have the life of a ‘more’ disabled person than I have before. But it’s actually the opposite. I am just as disabled as I always have been, but now I am taking some control over how my life works. I’m looking forward to finding out what happens.

Source: Burnout | autisticality

Autistic self-advocates also face activist burnout.

One of the major themes we see is that the impact of activist burnout compounds existing industry and workplace pressures faced by marginalized tech workers. Activism burnout is usually happening while advocates are also facing demanding schedules, hostile work environments, and a tech culture where abuse, discrimination, microaggressions, and psychological effects like imposter syndrome and stereotype threat are widespread. This echoes what Keidra Chaney wrote in Invisible: Burnout and Tech: “For marginalized workers in tech – women, people of color, queer/trans people, people with disabilities – [tech] burnout comes quicker and harder. It comes from existing and being pressured to thrive in a space where your presence is seen as an aberration, and your skills are perceived as suspect. It’s a burnout not easily solved by quick fixes, or even a new job; it’s triggered by your own life, the very body you inhabit” [Model View Culture, 2015 Quarterly #3.] The realities of a marginalized existence in tech, layered with activist burnout are profound; as one respondent noted: “It’s alienating and exhausting during the workday and after the workday;” another acknowledged that, despite the rewards of the work, “it gets tiring to have people only see me as an activist and not as a deeply technical person who is also an activist… it makes me question whether I’m really as deeply technical as I think I am. It gives my impostor syndrome yet another thing to play with.”

Of the ~30 respondents to our survey, mental health problems were one of the most heavily referenced effects of diversity in tech work, with numerous mentions of anxiety, depression and insomnia, as well as difficulty managing frustration and anger. In some cases, respondents reported that burnout triggered new mental illness symptoms; in other cases, it exacerbated, worsened or brought back pre-existing mental illnesses and related symptoms – as one activist noted: “I had been having mental health issues before already. Before my first burnout from tech activism, I was recovering from depression and eating disorders, and my recovery was going well. A short time into this burnout, my depression and eating disorders came back.”

Source: Putting a Spotlight on Diversity in Tech Burnout by The Editor | Model View Culture

GenderMag and Cognitive Walkthroughs

GenderMag focuses on five facets of gender differences that have been extensively investigated in the literature pertaining to problem solving. It encapsulates them into a set of faceted personas to bring them to life, and embeds their use into a systematic process based on a gender specialization of the Cognitive Walkthrough (CW) [59, 63]. The five facets are:

Motivation: Research spanning over a decade has found that females tend (statistically) to be motivated to use technology for what they can accomplish with it, whereas males are often motivated by their enjoyment of technology per se [12, 13, 19, 31, 33, 37, 43, 57]. This difference can affect which software features users choose to use.

Information processing styles: To solve problems, people often need to process new information. Females are more likely (statistically) to process new information comprehensively-gathering fairly complete information before proceeding-but males are more likely to use selective styles-following the first promising information, then backtracking if needed [17, 22, 45, 46, 52]. Each style has advantages, but either is at a disadvantage when not supported by the software.

Computer self-efficacy: Self-efficacy is a person’s confidence about succeeding at a specific task, and influences their use of cognitive strategies, persistence, and strategies for coping with obstacles [3]. Empirical data have shown that females often have lower computer selfefficacy than males, and this can affect their behavior with technology [5, 6, 12, 13, 24, 32, 34, 43, 49, 50, 58].

Risk aversion: Research shows that females tend statistically to be more risk-averse than males [23], surveyed in [62], and meta-analyzed in [21]. These results span numerous decision-making domains, such as in ethical decisions, investment decisions, gambling decisions, health/safety decisions, career decisions, and others. Risk aversion with software usage can impact users’ decisions as to which feature sets to use.

Tinkering: Research across age groups and professions reports females being statistically less likely to playfully experiment (“tinker”) with software features new to them, compared to males. However, when females do tinker, they tend to be more likely to reflect during the process and thereby sometimes profit from it more than males do [6, 13, 18, 20, 33, 54].

Source: Finding Gender-Inclusiveness Software Issues with GenderMag: A Field Investigation

Cognitive Walkthroughs focus on just one attribute of usability, ease of learning.

Cognitive walkthroughs evaluate each step necessary to perform a task, attempting to uncover design errors that would interfere with learning by exploration. The method finds mismatches between users’ and designers’ conceptualization of a task.

The procedure uncovers explicit and implicit assumptions made by developers about users’ knowledge of the task and interface conventions. The evaluation procedure takes the form of a series of questions asked about each step in a task that are derived from a theory of learning by exploration.

Source: The Cognitive Walkthrough Method: A Practitioner’s Guide

Per the researchers, the five facets of the GenderMag method are backed by extensive empirical and theoretical work. Facets backed by at least 5 independent empirical studies were chosen, with some having 10 or 15. The majority of studies favor US populations and all are based on adults. Children are excluded from claims.

They realized that, really, it’s all about the facets. It’s not really about gender. It’s all about the facet values and being inclusive across the range of facet values.

I’m channeling Abby, and I do not like this software.

Source: Finding Gender-Inclusiveness Software Issues with GenderMag: A Field Investigation – YouTube