I updated “Created Serendipity: Chance Favors the Connected Mind” with selections from “Twitter and Tear Gas: The Power and Fragility of Networked Protest”.

Rather than connecting with people who are like them only in ascribed characteristics — things we mostly acquire from birth, like family, race, and social class (though this one can change throughout one’s life)—many people have the opportunity to seek connections with others who share similar interests and motivations. Of course, place, race, family, gender, and social class continue to play a very important role in structuring human relationships—but the scope and the scale of their power and their role as a social mechanism have shifted and changed as modernity advanced.(Page 10)

Opportunities to find and make such connections with people based on common interests and viewpoints are thoroughly intertwined with the online architectures of interaction and visibility and the design of online platforms. These factors—the affordances of digital spaces—shape who can find and see whom, and under what conditions; not all platforms create identical environments and opportunities for connection. Rather, online platforms have architectures just as our cities, roads, and buildings do, and those architectures affect how we navigate them. (Explored in depth in later chapters.) If you cannot find people, you cannot form a community with them.

Source: Twitter and Tear Gas: The Power and Fragility of Networked Protest (p. 10-11). Yale University Press. Kindle Edition.

Via: 💬 Online Disinhibition Effect | Read Write Collect

I updated “The Spectacle of Cruel Laughter” with selections from ““Nanette,” Reviewed: Hannah Gadsby’s Netflix Standup Special Forces Comedy to Confront the #MeToo Era | The New Yorker”.

But in the course of the hour-long set, which was filmed at the Sydney Opera House (Gadsby has also been performing at the SoHo Playhouse, in New York), “Nanette” transforms into a commentary on comedy itself-on what it conceals, and on how it can force the marginalized to partake in their own humiliation. Gadsby, who once considered Bill Cosby her favorite comedian, now plans to quit comedy altogether, she says, because she can’t bring herself to participate in that humiliation anymore. Onstage, Gadsby typically speaks in a shy, almost surprised tone, playing jokes off of an unassuming, nebbishy demeanor. She clutches the mic with two fists and speaks softly, forcing audiences to listen closely to hear her. In “Nanette,” she seems to slowly shed that persona, becoming increasingly assertive and, at times, deadly serious. Her set builds to include more and more disturbing accounts of her own experiences with homophobia and sexual assault, and broader themes of violence against women and male impunity. But for every moment of tension, Gadsby gives her crowd release in a punch line-until she doesn’t. When the jokes stop, the audience is forced to linger in its unease. “This tension? It’s yours,” she says at one particularly upsetting moment, toward the end of the show. “I am not helping you anymore.”

Watching Gadsby, it was impossible not to think of the many women who’ve come forward in recent months with stories of abuse that were years or even decades old. You could consider the #MeToo moment itself as a kind of callback, a collective return to stories that women have been telling one way-to others, to themselves-with a new, emboldened understanding that those past tellings had been inadequate.

Source: “Nanette,” Reviewed: Hannah Gadsby’s Netflix Standup Special Forces Comedy to Confront the #MeToo Era | The New Yorker

I updated “Wanted: hospitals and doctors’ offices that…” with selections on access intimacy from “The Doctor and Nurse Who “Got It” | Health as a Human Right” and “Access Intimacy: The Missing Link | Leaving Evidence”.

I also added the selection from “The Doctor and Nurse Who “Got It” | Health as a Human Right” to “Accessibility, Access Intimacy, and Forced Intimacy”.

This is the story about a doctor and nurse I once had and how they “got it.”

“Getting it” isn’t necessarily something that you can define. It’s ineffable. It’s more of a feeling than a specific action. For me, it’s a connection that runs deeper than the diagnosis, the medical terminology, the treatments proposed. It’s a sense of being listened to and really heard. It’s feeling of being truly cared for. It’s a sense of empathy or at least a willingness to immerse oneself in my world as a patient, to feel and see what I face. When I think of my doctor and nurse who “got it”, I remember the sense of safety and calm they offered me and knowing that I would be okay. To each patient surely it may mean something different. But for me “getting it” gives me the ability as a patient to breathe, and perchance even to live.

Source: The Doctor and Nurse Who “Got It” | Health as a Human Right

Access intimacy is that elusive, hard to describe feeling when someone else “gets” your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level. Sometimes it can happen with complete strangers, disabled or not, or sometimes it can be built over years. It could also be the way your body relaxes and opens up with someone when all your access needs are being met. It is not dependent on someone having a political understanding of disability, ableism or access. Some of the people I have experienced the deepest access intimacy with (especially able bodied people) have had no education or exposure to a political understanding of disability.

Access intimacy is also the intimacy I feel with many other disabled and sick people who have an automatic understanding of access needs out of our shared similar lived experience of the many different ways ableism manifests in our lives. Together, we share a kind of access intimacy that is ground-level, with no need for explanations. Instantly, we can hold the weight, emotion, logistics, isolation, trauma, fear, anxiety and pain of access. I don’t have to justify and we are able to start from a place of steel vulnerability. It doesn’t mean that our access looks the same, or that we even know what each other’s access needs are. It has taken the form of long talks into the night upon our first meeting; knowing glances shared across a room or in a group of able bodied people; or the feeling of instant familiarity to be able to ask for help or support.

Source: Access Intimacy: The Missing Link | Leaving Evidence

I updated “Bring the backchannel forward. Written communication is the great social equalizer.” with a selection from “The neurodiversity movement: Autism is a minority group. NeuroTribes excerpt.”.

ANI launched its online list, ANI-L, in 1994. Like a specialized ecological niche, ANI-L had acted as an incubator for Autistic culture, accelerating its evolution. In 1996, a computer programmer in the Netherlands named Martijn Dekker set up a list called Independent Living on the Autism Spectrum, or InLv. People with dyslexia, ADHD, dyscalculia, and a myriad of other conditions (christened “cousins” in the early days of ANI) were also welcome to join the list. InLv was another nutrient-rich tide pool that accelerated the evolution of autistic culture. The collective ethos of InLv, said writer and list member Harvey Blume in the _New York Times _in 1997, was “neurological pluralism.” He was the first mainstream journalist to pick up on the significance of online communities for people with neurological differences. “The impact of the Internet on autistics,” Blume predicted, “may one day be compared in magnitude to the spread of sign language among the deaf.”

Source: The neurodiversity movement: Autism is a minority group. NeuroTribes excerpt.

I updated “The Pipeline Problem and the Meritocracy Myth” with selections from “Words Matter – Moving Beyond “Meritocracy” – Mozilla Stands for Inclusion” and “The end of ‘meritocracy’ at Mozilla | Doug Belshaw’s Thought Shrapnel”.

“Meritocracy” was widely adopted as a best practice among open source projects in the founding days of the movement: it appeared to speak to collaboration amongst peers and across organizational boundaries. 20 years later,  we understand that this concept was practiced in a world characterized by both hidden bias and outright abuse. The notion of “meritocracy” can often obscure bias and can help perpetuate a dominant culture. Meritocracy does not consider the reality that tech does not operate on a level playing field.

Source: Words Matter – Moving Beyond “Meritocracy” – Mozilla Stands for Inclusion

The world is not a neutral place and meritocracy can actually entrench privilege.

Source: The end of ‘meritocracy’ at Mozilla | Doug Belshaw’s Thought Shrapnel

I updated “Interaction Badges: Opportunity but Not Pressure” with a selection from “History of ANI” as featured in “Loud Hands: Autistic People, Speaking”.

“Opportunity but not pressure” is a core principle for all Autreat activities: attendance at presentations, informal discussions that are held in the evenings, swimming and other recreational activities, socializing, meals (people who prefer to make their own meal arrangements are able to register for Autreat without paying for Autreat meals), on-site lodging (people who prefer to stay at an off-site hotel can register for Autreat at a commuter rate)—all participation is purely voluntary.

Freedom from pressures and expectations 

For some autistic people attending Autreat, the sudden absence of pressures and expectations to behave in certain ways can be quite disorienting at first. NT people are often disoriented as well, and may experience culture shock. One NT attendee described feeling unsure of how to behave and how to relate to people, confused about how to interpret other people’s behavior, and anxious that he might offend people without realizing it (personal communication). In other words, he was able to experience at Autreat some of the same social confusion and discomfort that autistic people frequently experience in NT society. While this can be somewhat disturbing, a number of NT people have reported that it was a valuable experience that helped them to better understand what autistic people go through on a daily basis.

The absence of any expectation or pressure to socialize, and the knowledge that they’re free to withdraw at any time, seem to free many autistic people to want to socialize.”

Source: History of ANI

Featured in: Loud Hands: Autistic People, Speaking

I updated “Bring the backchannel forward. Written communication is the great social equalizer.” and “Wanted: hospitals and doctors’ offices that…” with selections from “Fergus Murray: Why ‘nothing about us without us’ should be an Autism policy principle | CommonSpace”.

When AMASE conducted a survey about the mental health of autistic people around Scotland, we found that many had been excluded by such simple things as practices insisting on telephone contact

Source: Fergus Murray: Why ‘nothing about us without us’ should be an Autism policy principle | CommonSpace

I updated “Wanted: psychologists, psychiatrists, neuropsychiatrists, and neurologists who…” with selections from “SQUIDALICIOUS: My Comments to the September 2018 IACC on Autism and Health Care Issues”.

Both formal research, and autistic people’s own reports, clearly show that autistic health concerns-including mental health issues-are too often dismissed or misunderstood, and that autistic people are also more likely than the general population to have co-occurring health conditions.

It is only through participatory autism research that we have become aware of matters like the crisis-level rates of suicide and suicidal ideation in autistic people, while studies of commonly self-reported but poorly studied and understood co-occurring conditions like hypermobility or Ehlers-Danlos syndrome are only now emerging. If we are going to properly support autistic people of all abilities to achieve best possible health outcomes, our health care initiatives need autistic guidance.

I would like to see more of this autistic-informed policy integrated into autism education for medical professionals, for matters like accommodations during patient-professional interactions. We need more medical personnel to understand why autistic people-even those technically capable of holding a conversation-can have a debilitating fear of needles, may have difficulty with sensory-intensive procedures like MRIs or EEGs, may have trouble answering questions or self-reporting accurately due to processing, alexithymia, or interception issues, and may have meltdowns when overwhelmed. We must develop strategies for ensuring those autistic individuals are accommodated, so they can receive the care they deserve without being written off as “difficult.”

I would like to see more medical professional awareness about the sensory needs of autistic people both in general, and in medical environments. When my son was recently in the ER at Stanford University, he was given access to a lovely sensory “Imagination Station,” and in addition the flickering fluorescent lights in his room were turned off. Many autistic adults who heard about my son’s experience reported that they too would like access to these kinds of sensory accommodations, but such options, even when available, are usually reserved for children.

I would like to see more outreach to medical schools and other training programs about the need for more neurologists, behavioral psychiatrists, developmental pediatricians, and registered dietitians both in general, and who understand autism specifically. These scarcity of these specialists makes accessing health care even more difficult for autistic kids and adults.

I would like to see investment in “health passports,” like those developed by the UK’s National Autistic Society, to improve autistic people’s hospital and medical experiences. I would like to see encouragement to adopt and support models like the autism and healthcare toolkits and resources developed byAASPIREandUCSF’s Office of Developmental Primary Care, in delineating compassionate, respectful, and useful best practices for patients with developmental disabilities.

I would like to see all autistic people, including those with intellectual disabilities, treated with more respect by medical professionals. Autistic people must to be able to trust the professionals taking care of them if they are to tolerate anxiety-provoking medical environments-yet too often autistic people are not even addressed during in-person conversations about their own health, or they are spoken in a manner more appropriate for speaking to A Very Good Dog (as happened to my son while getting his flu shot just this week). In worst-case scenarios, dismissive attitudes can lead to tragedy, as with the recent death of 18-year-old Oliver McGowan. These attitudes must change, because my son’s life and those of his autistic community members are valuable, and should be treated that way.

Finally, I would like to see recognition that health care access gaps are even more pronounced for autistic kids and adults who aren’t male, autistic people of low socioeconomic status, and autistic people of color, due to well-documented barriers including accessing formal diagnosis, and thus receiving proper care and accommodations. We need investment in easy-read and multilingual autism and health care information. Ideally, we also need investment in “community ambassadors” who can translate and/or advocate for people who may have multiple barriers to resources, and thus to effective self- or family advocacy.

Source: SQUIDALICIOUS: My Comments to the September 2018 IACC on Autism and Health Care Issues

I updated “Neurodiversity in the Classroom” with selections from “Ann’s Autism Blog: Autism, School, Exclusion. What’s fair?”.

The picture shows a school classroom as I see it, as an autistic person.  A kaleidoscope of shape and blinding lighting, with vague outlines which are probably other students.  Deafening noise.  The stench of different smells.  The confusion of many voices, including some heard through walls from neighbouring halls and classes.  School uniform that feels like barbed wire on my skin.

In the chaos, a different voice which I have to try to listen to.  It’s so hard.  My brain doesn’t want to tune the rest of the noise out.  Apparently I’ve been asked something, but I miss it.  The voice gets more strident, the class turns to look at me.  The intense stares overwhelm me.  The person next to me jostles me and it feels like an electric shock on my skin.  Only six more hours of hell to go…. only six….

Some of our autistic pupils simply cannot do this alone, without ‘time out’ to recover from the pain and exhaustion during the school day.  Not for hour after hour of puzzling painful chaos.

We’ve turned classrooms into a hell for autism. Fluorescent lighting. Endless noise. Everywhere, bright patterns and overloading information. Groupwork and social time. Crowded hallways and relentless academic pressure. Autistic children mostly could cope in the quieter schools of decades ago. Not a hope now.

We cannot simply exclude autistic pupils for entering meltdowns. Meltdowns are part of autism for a good number of autistic young people.

Whilst mindful that of course everyone needs to be safe, the way to achieve safety is to stop hurting the autistic children. Punishing them for responding to pain is not something any of us need to do.

What schools need to do is to understand autism. In understanding it, we can help to stop putting the children in pain and exhaustion. It’s actually quite easy. And quite cheap.

Source: Ann’s Autism Blog: Autism, School, Exclusion. What’s fair?