Inclusive Meetings, Classes, and Presentations with Access Notes, Bodymind Affirmations, and Small Changes

I’ve noticed a trend among neurodivergent and disabled speakers, notably Lydia X. Z. Brown and Jonathan Mooney, of prefacing their presentations with an access note and a bodymind affirmation. They encourage people, be it in an auditorium or a group video chat, to move around and get comfortable.

I believe we should all move in our space in whatever way is most comfortable for our bodyminds.

Please use this space as you need or prefer.

Sit in chairs or on the floor, pace, lie on the floor, rock, flap, spin, move around, come in and out of the room.

This is an invitation for you to consider what your bodymind needs to be as comfortable as possible in this moment.

This is an invitation to remind yourself to remember and to affirm that your bodymind has needs and that those needs deserve to be met, that your bodymind is valuable and worthy, that you deserve to be here, …, to belong.

Source: Against Ableism & White Supremacy: Disability Justice is Our Liberation – YouTube

I know that I myself could not sit still in a room like this for even 15 seconds. So if you are like me and you need to take a break during my presentation, that’s all good. You need to go to the back of the room and pace back and forth, I won’t be offended. You need to leave the room, it’s all good. I myself may wander off in the middle of my presentation, and you all will be accepting, inclusive, and accommodating of that for sure. (Laughter) But, hey, you know what, this is your time.

Source: Lab School Lecture Series – Jonathan Mooney – YouTube

We Stimpunks really like and appreciate these affirmations and need the access and understanding they offer, both online and in physical space. We bring our whole bodyminds — stims, senses, perceptual worlds, and all — to every learning experience.

Though autistic people live in the same physical world and deal with the same ‘raw material’, their perceptual world turns out to be strikingly different from that of non-autistic people.

Source: Sensory Perceptual Issues in Autism and Asperger Syndrome, Second Edition: Different Sensory Experiences – Different Perceptual Worlds eBook: Bogdashina, Olga, Casanova, Manuel

Where disability comes into the picture is thinking about how someone’s body or mind might function best in an environment, a built environment or an emotional or communicative environment or infrastructure that perhaps wasn’t designed to begin with with that particular person’s bodily capacity or neurodivergence in mind.

Source: Making Work Accessible, Wherever it Happens – Distributed.blog

Flexibility makes a big difference in inclusion. Small changes have big impact.

Small changes that can easily be made to accommodate autism really do add up and can transform a young person’s experience of being in hospital. It really can make all the difference.

Autism + environment = outcome

Source: “It’s Not Rocket Science” – NDTi

Our family, by necessity, near constantly advocates and negotiates for these small changes. Small changes go a long way to bringing the access promised in access notes and bodymind affirmations.

For example, making cameras optional during video classes is a small change that makes a huge difference for us.

So I repeat my one small but crucial piece of advice (more than advice: it’s an admonition): Make cameras optional.

We should treat video presence in our online Fall emergency distance education courses in the way we treat all accessibility, building in digital accommodations in the way one would physical. If you or your institution requires presence, offer alternative forms for students for whom presence means disenfranchisement, hardship, shame, or lack of participation (ie. bandwidth–I had to turn off my video yesterday at our FI staff meeting in order that we could hear better). This is an opportunity for digital literacy and for demonstrating your concern for learning. What are your system’s capacities? Perhaps, if a student doesn’t want to be seen or cannot be, subtitles are the answer. Maybe chat. Maybe blogs before class or texting. There one that matters most: how can you, as an educator, find an open, equitable way to help students learn what you most want to offer them.

Source: Cameras Optional, Please! Remembering Student Lives As We Plan Our Online Syllabus | HASTAC

A “cameras on” policy for classes and presentations, especially when the camera is used to enforce neurotypical notions of attention, is ableist and exclusionary.

For those of us with stims deemed anti-social, like nose-picking and scalp-gouging, turning off the camera allows us to stim and regulate without judgment, stigma, or distracting others. Stimming is an adaptive coping mechanism necessary to managing sensory overwhelm and attention. Making us sit still, in frame, on camera, suppressing stims is no way to learn.

A hostile learning environment, whether at home, school, or work, is a place where fear elicits the self-censoring instinct and shuts down the learning process.

Learners rarely put forth the effort to learn unless learner safety is in place. It’s a “build it and they will come” principle. If you don’t build it, they may still come, but they won’t learn.

Source: The 4 Stages of Psychological Safety (pp. 44-47)

In addition to allowing cameras off, complementing video chats with a text backchannel makes all the difference to including us. Before retiring, I had difficulties navigating the rise of video conferencing. Like Vint Cerf, I found it to be a huge challenge.

Around 1971, Ray Tomlinson developed the idea of networked electronic mail, which was hugely attractive to me because it replaced uncertain voice calls with the clarity of text. The development of the Internet was undertaken in the context of heavy use of email.

The rise of video conferencing has actually been a huge challenge for me as it reintroduces some of the uncertainty of voice calling and I look forward to real-time, automatic captioning to overcome the limitations that medium poses for me.

Source: Vint Cerf on accessibility, the cello and noisy hearing aids

Luckily, at the time, I was on a team that appreciated neurodiversity, differentiated instruction, and accessibility. We alternated meetings between video and text, allowed cameras off, and used a backchannel so I could type instead of talk during video sessions. Situational mutism marked my childhood and strikes me still, especially on group video.

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

Let us stim. Let us move. Let us be kinetic. Let us turn off the camera. Let us type to talk. Don’t force us into non-compliance to meet our needs.

Our non-compliance is not intended to be rebellious. We simply do not comply with things that harm us. But since a great number of things that harm us are not harmful to most neurotypicals, we are viewed as untamed and in need of straightening up.

Source: THINKING PERSON’S GUIDE TO AUTISM: On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies

Make the small changes now, and affirm our divergent bodyminds as valid and belonging and not in need of straightening up.

Foster inclusion and belonging with an access note and bodymind affirmation at the beginning of your class, meeting, or presentation.

I’ll be using Lydia X. Z. Brown’s affirmation as a template:

I believe we should all move in our space in whatever way is most comfortable for our bodyminds.

Please use this space as you need or prefer.

Sit in chairs or on the floor, pace, lie on the floor, rock, flap, spin, move around, come in and out of the room.

This is an invitation for you to consider what your bodymind needs to be as comfortable as possible in this moment.

This is an invitation to remind yourself to remember and to affirm that your bodymind has needs and that those needs deserve to be met, that your bodymind is valuable and worthy, that you deserve to be here, …, to belong.

Source: Against Ableism & White Supremacy: Disability Justice is Our Liberation – YouTube

Defining Ableism

Excerpted below are quotes from community writing and scholarly studies on the definition, history, and forms of ableism.

Content notes: ableism, racism, sexism, white supremacy, slavery, ABA, cure, defectiveness, eugenics, scientific racism, torture, murder, police violence, state violence, suicide, institutionalization, imprisonment

Ableism

A system that places value on people’s bodies and minds based on societally constructed ideas of normality, intelligence, excellence, desirability, and productivity. These constructed ideas are deeply rooted in anti-Blackness, eugenics, misogyny, colonialism, imperialism and capitalism.

This form of systemic oppression leads to people and society determining who is valuable and worthy based on a person’s language, appearance, religion and/or their ability to satisfactorily [re]produce, excel and “behave.”

You do not have to be disabled to experience ableism.

Source: January 2021 Working Definition of Ableism – TL’s BLOG – TALILA A. LEWIS

Ableism

  1. Oppression, prejudice, stereotyping, or discrimination against disabled people on the basis of actual or presumed disability.
  2. The belief that people are superior or inferior, have better quality of life, or have lives more valuable or worth living on the basis of actual or perceived disability.

Source: Autistic Hoya — A blog by Lydia X. Z. Brown: Definitions

Ableism is a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities and often rests on the assumption that disabled people need to be ‘fixed’ in one form or the other. Ableism is intertwined in our culture, due to many limiting beliefs about what disability does or does not mean, how able-bodied people learn to treat people with disabilities and how we are often not included at the table for key decisions.

Source: Ableism – Center for Disability Rights

Ableism – The practices and dominant attitudes in society that devalue and limit the potential of persons with disabilities. A set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities.

Disablism – A set of assumptions (conscious or unconscious) and practices that promote the differential or unequal treatment of people because of actual or presumed disabilities.

Source: What Is Ableism? | Stop Ableism

Ableism is an entire system of thinking and doing that hurts disabled people/people with disabilities.

Ableism is a form of systemic, structural, and institutional oppression.

Ableism is racist and white supremacist.

It is anti-Black and anti-Native.

Ableism is capitalist. Ableism is eugenicist.

Ableism is a system of power differentials and power relations, where people whose body minds are considered healthy, whole, functional, sane, stable, strong, and intelligent are granted enormous political, social, cultural, and economic power at the direct expense of people whose body minds are instead deemed sick, broken, defective, diseased, disordered, deficient, weak, unstable, and stupid.

Ableism teaches us which kinds of people count as human and which do not.

Ableism teaches us which kinds of people ought to be allowed to live, to breathe, and to be, and which ought not.

Ableism teaches us which kinds of people should reproduce and which kinds of people should be reproduced.

Ableism teaches us which kinds of children should be allowed to be born and which people ought to be allowed to have children in the first place.

Ableism teaches us who is considered valuable, worthy, and desirable and who is considered expendable and disposable.

Ableism teaches us who is worth living and saving and who, instead, is acceptable collateral damage.

Ableism is at its core a system of oppression that is rooted in, connected to, inextricably tied to, dependent on, and necessary for every other form of oppression.

In particular, ableism is virulently racist and white supremacist.

In particular, in this country, it is anti-Black and anti-Native.

Source: Against Ableism & White Supremacy: Disability Justice is Our Liberation – YouTube

Ableism is not a list of bad words. Language is *one* tool of an oppressive system. Being aware of language — for those of us who have the privilege of being able to change our language — can help us understand how pervasive ableism is. Ableism is systematic, institutional devaluing of bodies and minds deemed deviant, abnormal, defective, subhuman, less than. Ableism is *violence.*

Source: Autistic Hoya — A blog by Lydia X. Z. Brown: Ableism/Language

Ableism is not “bad words.” It’s violence.

Ableism is the violence in the clinic, in the waiting room, in the social welfare lines, in the classroom, in the recess yard, in the bedroom, in the prisons, in the streets. Ableism is the violence (and threat of violence) we live with each day.

Ableism is the constant apologetics for family members and caregivers who murder their disabled relatives — they must have had it so hard, it must have been such a burden, you musn’t judge unless you’ve walked in their shoes. (In the last few decades, more than 400 disabled people were murdered by relatives or caregivers, and those are only the stories we know about.)

Ableism is the fact that a police officer who shot an unarmed Black man with his hands up decided it made more sense to claim he was actually aiming for the Brown autistic man holding a toy truck beside the Black man.

Ableism is the fact that anywhere from around 40% to 70% of U.S. prisoners are also disabled, and that the forces of white supremacy, racism, and capitalism that keep poor Black and Brown people in prisons are necessarily intertwined with ableist presuppositions about intelligence and emotional capacity. (And that all incarcerated people — disabled or not — as well as many free disabled people can be paid, completely legally, only a few cents per hour for menial labor, and that this is called opportunity and teaching work ethic.)

Ableism is the fact that it is totally legal to torture disabled people in the name of treatment and help and “for your own good” — everywhere from the daily ABA torture sessions focused on normalization at the expense of our own mental health to the extremes of the Judge Rotenberg Center where we are shocked even for flapping or moving out of our seats.

Ableism is the fact that on average, autistic people die 30 years younger than non-autistic people, with suicide as the second leading cause of death. As one friend put it, that’s an act of murder by society, because it is so bad that too many of us decide that it is no longer worth trying to live in a world literally designed to destroy us from the moment we are first born.

They hate us, and we already know it. They aim for us. They mean to kill. They mean to harm. They know what they are doing, and we know it too. There can be no innocence, not for us. Ableism is not some arbitrary list of “bad words,” as much as language is a tool of oppression. Ableism is violence, and it kills.

Source: Autistic Hoya — A blog by Lydia X. Z. Brown: Ableism is not “bad words.” It’s violence.

We believe that ableism is a “system of discrimination,” which means that it influences how people talk about and perceive autism whether or not they are aware of it, and regardless of whether or not they actually believe that autistic people are inferior to nonautistic people. We also believe that language choices are part of what perpetuates this system

Ableism is perpetuated by culturally shared norms and values, as well as ways of speaking and writing about disability and disabled people. These social processes culminate in, and originate from, societal expectations about the abilities required for granting individuals full social rights, agency, and even personhood. Ableism intersects with other systems of oppression, including racism, sexism, homophobia, and transphobia. This means that ableism is compounded by experiences such as racism. In addition, disabled people of color are more likely to experience the effects of ableism than white disabled people.

Source: Avoiding Ableist Language: Suggestions for Autism Researchers | Autism in Adulthood

Defectiveness justifies cure and makes it essential. Across the centuries, how many communities have been declared inherently defective by white people, rich people, nondisabled people, men backed by medical, scientific, academic, and state authority?

Defectiveness wields incredible power because ableism builds and maintains the notion that defective body-minds are undesirable, worthless, disposable, or in need of cure. In a world without ableism, defective, meaning the “imperfection of a bodily system,” would probably not even exist. But if it did, it would only be a neutral descriptor. However, in today’s world where ableism fundamentally shapes white Western cultural definitions of normal and abnormal, worthy and unworthy, whole and broken body-minds, any person or community named defective can be targeted without question or hesitation for eradication, imprisonment, institutionalization. The ableist invention of defectiveness functions as an indisputable justification not only for cure but also for many systems of oppression.

Cartwright and the rest use the ableist invention of defectiveness in order to explain and justify the practices of enslavement, imprisonment, institutionalization, and state violence. In essence, they fortify white supremacy by leveraging ableism.

Entire body-minds, communities, cultures are squeezed into defective. And then that single blunt concept turns, becoming defect. Bullies hurl it as an insult. Strangers ask it out of curiosity. Doctors note it in medical files. Judges and juries hear it in testimony. Scientists study it as truth. Politicians write it into policy. Defect and defective explode with hate, power, and control.

The list of body-mind differences, illnesses, and so-called defects that the medical-industrial complex wants to eradicate goes on and on. This kind of elimination benefits some of us in significant ways-saving our lives or increasing our comfort. At the same time, it also commits damage, routinely turning body-minds into medical objects and creating lies about normal and natural.

…as a widespread ideology centered on eradication, cure always operates in relationship to violence.

As an ideology seeped into every corner of white Western thought and culture, cure rides on the back of normal and natural.

Source: » Brilliant Imperfection: Grappling with Cure | Eli Clare

Forced intimacy is a cornerstone of how ableism functions in an able bodied supremacist world. Disabled people are expected to “strip down” and “show all our cards” metaphorically in order to get the basic access we need in order to survive. We are the ones who must be vulnerable-whether we want to or not-about ourselves, our bodyminds and our abilities. Forced intimacy was one of the many ways I learned that consent does not exist for my disabled asian girl bodymind. People are allowed to ask me intrusive questions about my body, make me “prove” my disability or expect me to share with them every aspect of my accessibility needs. I learned how to simultaneously shrink myself and nonconsensually open myself up as a disabled girl of color every damn day.

Forced intimacy is the opposite of access intimacy. It feels exploitative, exhausting and at times violating. Because I am physically disabled and use a manual wheelchair, I often experience forced intimacy when able bodied people push my wheelchair without my consent or when I am in situations where I have to be pushed by people I do not feel safe with, know or who are actively harassing me while pushing me. This often happens when I am traveling and have to rely on strangers for my access needs. I cannot count the number of times a strange man has pushed my wheelchair in the airport, while saying offensive and gross comments to me. These are the moments where disability, race, gender, immigration, class, age and sexuality collide together at once, indistinguishable from one another.

Source: Forced Intimacy: An Ableist Norm | Leaving Evidence

The notion that some people produce more (or less) for the economy and are, therefore, more (or less) valuable -is ableism.

Unsurprisingly, undergirding many US immigration laws, for instance, are theories of “scientific” racism and eugenics – namely, on ideas of racial superiority/inferiority, gendered, sexual and psychopathic deviancy, and prevailing notions of “common sense” racism. Such arguments construct a knowledge system that ties the worth of people to their productivity and proximity to normative constructions of whiteness.

To be sure, then, ableism is part and parcel of white supremacy. According to critical race theorist Frances Lee Ansley, white supremacy is “a political, economic and cultural system in which whites overwhelmingly control power and material resources.” Furthermore, according to Robin DiAngelo, a scholar of Whiteness Studies, white supremacy defines white people “as the norm or standard for human, and people of colour as an inherent deviation from that norm.”

Source: A US immigration history of white supremacy and ableism | Human Rights | Al Jazeera

So intertwined are these oppressions that any attempt to rid the nation of racism without doing away with ableism yields practically nothing. The same is true in reverse. Disabled communities attempting to rid the nation of ableism find themselves having made very little headway because they are still practicing racism.

Source: Emmett Till & the Pervasive Erasure of Disability In Conversations about White Supremacy & Police Violence – TALILA A. LEWIS

Yet the cultural impulse to assume that people with genetic variations are in a constant state of suffering, and that it blights our lives, is so pervasive that it is even internalized by some with genetic conditions themselves.

Such genetic determinism is a new form of eugenic thinking grounded in what the communications studies scholar James L. Cherney calls “common sense” ableism, a belief system that allows people to simultaneously deny any commitment to distasteful eugenic principles while also holding them up. Common sense ableism permits, even encourages, such injurious attitudes.

Utilizing genome manipulation tools and performing genetic selection is tantamount to engaging in what Rosemarie calls “velvet eugenics.” Enforced by laissez-faire commercialism, rather than by the state, velvet eugenics seems like common sense, yet it hides its violence and inequality behind claims of patient autonomy and under a veil of voluntary consent. Ultimately, market-driven velvet eugenics embodies a similar goal of purging unacceptable human variations that campaigns to eliminate the supposedly unfit and inferior have held in the past. Both enact a mandate to exclude people with disabilities from coming into the world.

Source: The Dark Side of CRISPR – Scientific American

[A]bleism is that most insidious form of rhetoric that has become reified and so widely accepted as common sense that it denies its own rhetoricity—it “goes without saying.” To fully address it we must name its presence, for cultural assumptions accepted uncritically adopt the mantle of “simple truth” and become extremely difficult to rebut. As the neologism “ableism” itself testifies, we need new words to reveal the places it resides and new language to describe how it feeds. Without doing so, ableist ways of thinking and interpreting will operate as the context for making sense of any acts challenging discrimination, which undermines their impact, reduces their symbolic potential, and can even transform them into superficial measures that give the appearance of change yet elide a recalcitrant ableist system.

Ableism dominates the thinking of our society as a whole and it clearly operates as a discourse of power and domination.

Recognizing ableism requires a shift in orientation, a perceptual gestalt framed by the filter of the term “ableism” itself. The same texts that broadcast “Ableism!” to those oriented to perceive it are usually read innocently even when viewed from a liberal, humanitarian, or progressive perspective. Ableism is so pervasive that it is difficult to identify until one begins to interrogate the governing assumptions of well-intentioned society. Within the space allowed by these rhetorical premises, ableism appears natural, necessary, and ultimately moral discrimination required for the normal functioning of civilization. Consider a set of stairs. An ableist culture thinks little of stairs, or even sees them as elegant architectural devices—especially those grand marble masterpieces that elevate buildings of state. But disability rights activists see stairs as a discriminatory apparatus—a “no crips allowed” sign that only those aware of ableism can read—that makes their inevitable presence around government buildings a not-so-subtle statement about who belongs in our most important public spaces. But the device has become so accepted in our culture that the idea of stairs as oppressive technology will strike many as ludicrous. Several years ago when I began to study ableism, a professor—unconvinced of the value of the project—questioned my developing arguments by pointing to a set of steps and exclaiming, “Next you’ll be telling me that those stairs discriminate!” He was right.

The professor’s surprise suggests that commonplace cultural assumptions support themselves because the very arguments available against them seem unwarranted and invalid. Interrogating stairs was such an outrageous idea that a simple reductio ad absurdum argument depicted the critique of ableism as a fallacy. As an ingrained part of the interpretive frameworks sanctioned by culture, ableism gets reinforced by the everyday practice of interpreting and making sense of the world.

The problem is not that deviance is bad, it is that ableism teaches seeing it that way. The problem is not that being abnormal is unnatural, it is that ableism teaches valuing normalcy that way. The problem is not that ability resides in the body, and that a body with different skills is inherently unable to function in society, it is that ableism teaches knowing ability that way. Confronting ableism as visual, ideological, and epistemic problems does not require us to set aside efforts to change the material order of society—such as working to provide access to public spaces—but it does empower disability literature, art, slogans, and protests as crucial to the effort to change what disability means.

If we locate the problem in disability, then the ableist absolves his or her responsibility for discrimination and may not even recognize its presence. If we locate the problem in ableism, then the ableist must question her or his orientation. The critic’s task is to make ableism so apparent and irredeemable that one cannot practice it without incurring social castigation. This requires substantial vigilance, for ableist thinking pervades the culture. For example, as I write this, I am tempted to use medical metaphors to explain the task and script something like “we cannot simply excise the tumor of ableism and heal the culture, for it has metastasized and infiltrated every organ of society.” Yet this metaphor relies on an ableist perspective that motivates with the fear of death and turns to medical solutions to repair a body in decay. Using it, I would endorse and perpetuate ableist rhetoric, just as I would by using deafness as a metaphor for obstinacy (“Marie was deaf to their pleas for bread”) or blindness to convey ignorance (“George turned a blind eye to global warming”). The pervasiveness of these and similar metaphors, like the cultural ubiquity of using images of disabled bodies to inspire pity, suggest the scale of the work ahead, and the ease with which one can resort to using them warns of the need for critical evaluation of one’s own rhetoric. Yet the task can be accomplished. Just as feminists have changed Western culture by naming and promoting recognition of sexism, the glass ceiling, and patriarchy—admittedly a work in progress, yet also one that can celebrate remarkable achievements—we can reform ableist culture by using rhetoric to craft awareness and political action.

Source: The Rhetoric of Ableism | Cherney | Disability Studies Quarterly

In ableist societies, disabled people are considered less valuable, or they are even seen as expendable.

Source: Ableism – Wikipedia

COVID has highlighted what disabled people knew decades ago: We are viewed as disposable.

Source: Ableism & Racism: Roots of The Same Tree – Pushkin

One of the cruelest tricks our culture plays on autistic people is that it makes us strangers to ourselves. We grow up knowing we’re different, but that difference is defined for us in terms of an absence of neurotypicality, not as the presence of another equally valid way of being. We wind up internalizing a lot of hateful, damaging, and inaccurate things about ourselves, and that makes it harder to know who we really are or what we really can and cannot do. If no one ever acknowledges that we have a voice, we can forget how to use it. We might even decide not to.

Source: Loud Hands: Autistic People, Speaking

Our movement, however, needs nothing of respectability politics. Accepting – conceding, surrendering, submitting to – that will only erode our movement until it crumbles entirely. Respectability politics is what’s gotten us into reliance on foundations and nonprofits, and elected officials and bureaucrats, and policies and programs that only benefit the most privileged and resourced members of our communities at the direct expense of the most marginalized. Radical, militant anger – and radical, militant hope, and radical, wild dreams, and radical, active love – that’s what’ll get us past the death machines of ableism and capitalism and white supremacy and laws and institutions working overtime to kill us.

Source: Autistic Hoya: The neurodiversity movements needs its shoes off, and fists up.

There is conscious and unconscious bias about people with a whole continuum of atypical brains and bodies. And when we judge someone’s intelligence based on their spelling and we rule out their capacities as a human being because of their bad handwriting…,we are participating in a subtle and yet very powerful form of institutionalized ableism.

Elevate ableism as one of the injustices of our world.

Source: Normal Sucks: Author Jonathan Mooney on How Schools Fail Kids with Learning Differences

The tenets of DisCrit, as seen in Table 1, guide our analysis of scientific research throughout history and how it has been used to “other” people by defining the norm based on a white supremacist, ableist perspective of the world. Whiteness and ability are property, and the way these power systems play out in the field of education creates our inequitable, oppressive system.

DisCrit is focused on ways that the forces of racism and ableism circulate interdependently, often in neutralized and invisible ways, to uphold notions of normalcy.

Because DisCrit emphasizes the “legal and historical aspects” of disability and race in the U.S. (Annamma, Connor, & Ferri, 2016, p. 19), we focus on the historical developments of dis/ability and race as co-constructed social identities, starting with the 19th century. Although the use of scientific research by white Americans to dehumanize people of color preceded the 19th century, this period in U.S. history provides the most compelling evidence of the co-construction of race and disability through science, medicine, and immigration policy (Dolmage, 2018). This historical context contributes to the foundation of a critical perspective of contemporary issues related to scientific research in education because, as DisCrit affirms, ableism and racism circulate interdependently and “have been used separately and together to deny the rights of some citizens” (p. 19).

In the work of eugenicists, we again observe ableism and white supremacy in the creation of a narrative about who deserves the right to be human and live a full life and the denial of full personhood to those deemed inferior due to language, ethnicity, and perceived ability. While we can study eugenics from a historical standpoint, the fact is that “these eugenic ideas about the value of certain bodies have never gone away” (Dolmage, 2018, p. 4).

Source: Disrupting Dis/abilization: A Critical Exploration of Research Methods to Combat White Supremacy and Ableism in Education

These ableist beliefs defy reality testing, but they persist. As we challenge white supremacy, settler colonialism, gender normativity and violence that targets trans people, we challenge able-bodied normativity. Through this clearing practice, we create Disability Justice.

The histories of white supremacy and ableism are inextricably entwined, created in the context of colonial conquest and capitalist domination. One cannot look at the history of US slavery, the stealing of Indigenous lands, and US imperialism without seeing the way that white supremacy uses ableism to create a lesser/“other” group of people that is deemed less worthy/abled/smart/capable. A single-issue civil rights framework is not enough to explain the full extent of ableism and how it operates in society. We can only truly understand ableism by tracing its connections to heteropatriarchy, white supremacy, colonialism, and capitalism. The same oppressive systems that inflicted violence upon Black and brown communities for 500+ years also inflicted 500+ years of violence on bodies and minds deemed outside the norm and therefore “dangerous.” Furthermore, racism, anti-Islamic beliefs, ableism and imperialism come together to feed us images of the “terrorist” as a dangerous Brown enemy, an “other” who is sexually and mentally “wrong.” All this is compounded by the ways ableism, along with queer-hatred and the violence of the gender binary, label our bodies and communities as “deviant,” “unproductive,” and “invalid.”

It doesn’t help anyone to pretend that we don’t have differing bodies, minds, and hearts, desires, needs, and limits — we most certainly (and fabulously) do. A disability justice orientation names ableism as a constructed, violent ordering of bodily difference that our movement works to unmask and undo, but it also recognizes that we currently exist in the world as it has been structured by ableism. Therefore, mixed ability organizing means engaging the tensions between living in this system (which categorizes us, limits us, disables us, and pits us against each other), while also resisting it. The tension between these two facts will be an enduring feature of the struggle for disability justice.

Disability justice encompasses and embraces all bodies, minds, hearts, and forms of embodiment. This emergent movement is unquestionably of, by, and for disabled people of color and queer, trans, and gender- nonconforming people with disabilities, as we are subjected to the greatest violence of ableism, and therefore have the greatest stake in its abolition. Simultaneously, disability justice is ultimately about re-imagining and reinventing all of our relationships with one another, as well as with our own bodyminds. It is about transforming the very material and psychic frameworks that designate some bodies and minds as normative, valuable, and acceptable and others as deviant, worthless, or dangerous. We all have a stake, and role to play, in disability justice, in dismantling ableism and building toward a world where all bodies and minds are recognized and treated as valuable and beautiful. We still have a very long way to go, but we have each other to hold, and be held by, through the journey.

Our understanding of able-bodied supremacy has been formed in relation to intersecting systems of domination and exploitation. The histories of white supremacy and ableism are, after all, inextricably entwined, both forged in the crucible of colonial conquest and capitalist domination. We cannot comprehend ableism without grasping its interrelations with heteropatriarchy, white supremacy, colonialism, and capitalism, each system co-creating an ideal bodymind built upon the exclusion and elimination of a subjugated “other” from whom profits and status are extracted.

Ableism

The system of discriminatory practices and beliefs that maintain and perpetuate disability oppression.

Source: Skin, Tooth, and Bone: A Disability Justice Primer — Sins Invalid

ableism functions as a dehumanizing system that favors able-bodied people at the expense of people with disabilities, producing barriers from internalized ableism and shame, to interpersonal conflicts between non-disabled people and people with disabilities, lack of access to education, employment, and housing, social control imposed through the medical industrial complex and criminalization, and the severe isolation caused by institutionalization and incarceration.

Ableism tells us some bodies are valuable and some are disposable.

In the U.S. context, ableism has been forged with and through white supremacy, colonial conquest, capitalist domination, and heteropatriarchy so that bodies are valued for their ability to produce profit or have it extracted from them, or are otherwise excluded or eliminated through isolation, institutionalization, incarceration, and/or death. Since the 1960s, the disability rights movement has made important strides to establish the civil rights of people with disabilities, increase access for people with mobility and communication impairments, and advance a philosophy of independent living for people with disabilities. However, the wisdom and experiences of people of color and poor people have often been marginalized in the disability rights struggle, and the solutions have often been too narrow to get to the root causes of ableism that keep people with disabilities targeted for criminalization, poverty and isolation.

Source: Ableism is the Bane of My Motherfuckin’ Existence | Barnard Center for Research on Women

“Any form of discrimination is abuse, ableism is discrimination against people with disabilities and internalized ableism is when you inflict that discrimination on to yourself because it’s what society has told you is true. Which yes, is all rooted in White supremacy. Ableism, sexism, racism, homophobia and transphobia is all the same, just in different forms.”

Source: “Ism” is Code for Supremacy. Ableism and racism stem from the same… | by Eunice Brownlee | Medium

“To end white supremacy, we must dismantle the ableist notion of defectiveness.” He challenged my concepts of access and my understanding of the word defective while he linked the long history of that word with white supremacy. Eli discussed how “intersectional analysis allows us to see how all oppression grows from the same dominant power structure of cisgender — able bodied — white supremacist — capitalist — heteropatriarchy that bell hooks first articulated for us.”

Source: Dismantling the Box of Ableism | National SEED Project

Racism and ableism are often thought of as parallel systems of oppression that work separately to perpetuate social hierarchy. Not only does this way of looking at the world ignore the experiences of people of color with disabilities, but it also fails to examine how race is pathologized in order to create racism. Meaning that society treats people of color in specific ways to create barriers, and these poor conditions create disability. The concept of disability has been used to justify discrimination against other groups by attributing disability to them.

There are countless examples across history of black and brown bodies being pathologized in order to perpetuate white supremacy, and although there are examples of this across race, this piece will focus on the experiences of black people. An analysis of how black bodies have been pathologized in this country should begin with American slavery. The existence of the economic system of slavery relied on the social idea that African Americans lacked sufficient intelligence to participate or compete on an equal basis in society with white Americans. This idea was confirmed with the creation of several diseases specific to Black people. Drapetomania, for example, was a condition that caused slaves to run away “as much a disease of the mind as any other species of mental alienation.”1 Similarly, Dysaesthesia Aechiopis—a unique ailment differing “from every other species of mental disease, as it is accompanied with physical signs or lesions of the body”—resulted in a desire to avoid work and generally to cause mischief.2 These are only two examples of disability being created by people in power in order to preserve social order, and yet there are foundational.

To summarize, institutional racism has pathologized brown bodies in order to maintain the status quo while simultaneously failing to acknowledge that the state is responsible for creating environments where disability is inevitable. As a result, ableism will always exist if racism exists because it is a tool of racism, creating societal barriers for people of color creates disability. The social model of disability that the disability community is embracing by definition includes people of color, and yet the disability community is not inclusive of the struggles of people of color. Understanding the connection between these two systems of oppression should unite the disability and people of color communities, and yet little is known about this history. This does negate the experiences of people of color with disabilities, as there are many (myself included) who identify as both a person of color and as a person with a disability. It is true, however, that both these communities’ movements for civil rights have existed in primarily separate spheres. Understanding the historical connection between racism and ableism should lead to a connected effort to disable these systems of oppression. The ultimate goal of meaningful inclusion for the disability community will never be fully realized until black and brown people are also free.

Source: Racism and Ableism – AAPD

Additions to Our Philosophy on Equity, Learning, and Psychological Safety

Our Philosophy page lists acquired phrases that we steer by. They are compasses and stars that align us on our mission.

I added several phrases on equity, learning, and psychological safety from Human Restoration Project, Equity Literacy Institute, and Timothy R. Clark.

Learning is rooted in purpose finding and community relevance.

Social justice is the cornerstone to educational success.

Dehumanizing practices do not belong in schools.

Learners are respectful toward each other’s innate human worth.

Source: The Need – Human Restoration Project

In order to achieve equity we must prioritize the interests of the students and families whose interests historically have not been prioritized.

Equity requires the redistribution of material, cultural, and social access and opportunity.

Educational outcome disparities are not the result of deficiencies in marginalized communities’ cultures, mindsets, or grittiness, but rather of inequities.

Source: Basic Principles for Equity Literacy

Psychological safety is a condition in which you feel (1) included, (2) safe to learn, (3) safe to contribute, and (4) safe to challenge the status quo—all without fear of being embarrassed, marginalized, or punished in some way.

Giving inclusion safety is a moral imperative.

All human beings have the same innate need: We long to belong.

Source: The 4 Stages of Psychological Safety: Defining the Path to Inclusion and Innovation

We highly recommend all three resources.

Try Again: Mercy is Necessary to Learner Safety

“Retesting clearly works, so I give endless chances. If you’re willing to work, there’s always mercy. You can try again.”

— Craig B. Smith

Craig invites students to learn without adding fear to a subject that already creates its own. He recognizes that students who are emotionally distressed—anxious, angry, or depressed—are cognitively impaired and don’t learn well, so he fosters a challenging and yet nurturing climate of learner safety to dramatically reduce learning risk.

Based on his extraordinary perceptive capacity and ability to ward off compassion fatigue, he has mastered the art of shaping the social, emotional, and cognitive context, in creating a figuratively “clean, well-lighted place” where the whole student can flourish. This is learner safety.

Source: The 4 Stages of Psychological Safety (pp. 50 – 52)

If you’re going to test, then retesting is essential to learner safety. Not offering retesting is ableist and exclusionary to those of us with spiky profiles.

Craig maintains that slow students are not less intelligent students. They simply assimilate at a slower pace, so his focus is on student effort rather than aptitude. That ability to resist making discriminating judgments of students’ abilities is a skill, but it’s also a moral capacity, and one that many teachers don’t have the discipline to develop.

Source: The 4 Stages of Psychological Safety (p. 48)

Not offering retesting fails the imperative to encourage learning.

The moral imperative to grant learner safety is to act first by encouraging the learner to learn.

Source: The 4 Stages of Psychological Safety (p. 45)

Learning is invited, not commanded.

We need to remind ourselves that we don’t command learning, we invite it. The climate we create feeds the desire and motivation to learn. In an ideal setting, learner safety is a mutual giving and receiving of ideas, observations, questions, and discussion. If leaders are to meet learners where they are, you may need to back up and begin by supplying the inclusion safety that’s been absent. I have yet to see learner safety where inclusion safety is absent. One builds on the other.

Source: The 4 Stages of Psychological Safety (p. 46)

Testing creates a hostile, uninviting climate fraught with inequity and incompatible with many divergent bodyminds.

Standardized testing is a plague on the school system that does little to hit its intended goals. If we are to measure success of our students, then we’re on the wrong path. Traditional standardized testing simply reflects the inequities present in society.

If standardized testing must remain, why not cater it to the elements we need to promote in schools? Why not have standardized testing that measures students’ intrinsic motivation to learn?

Or how valued they feel as individuals in their classrooms?

Just as scientists measure soft skills in research studies, we could redefine the testing scenario to one that provides actual information that’s valuable to schools.

Source: Primer: A Guide to Human Centric Education

Don’t make testing more fearful and inequitable by not offering retesting.

In every learning context, consciously or not, we assess the level of interpersonal risk around us.

A hostile learning environment, whether at home, school, or work, is a place where fear elicits the self-censoring instinct and shuts down the learning process.

Learners rarely put forth the effort to learn unless learner safety is in place. It’s a “build it and they will come” principle. If you don’t build it, they may still come, but they won’t learn.

Source: The 4 Stages of Psychological Safety (pp. 44–47)

Allyship: Providing a Buffer to the Trauma

I would like to ask for non-autistic people to start actually helping. I know we have allies, but we don’t just need allies. We need outspoken allies. We need a buffer to the trauma. We need a break.

I’m tired. We’re tired. Something has got to give so autistic people can get some rest when fighting for justice.

Consider 30 minutes a week of activism, or speaking up and platforming autistic voices, if your livelihood is benefited by autistic lives.

Because current and future autistic lives are on the line, whether you feel that way or not.

Source: What Autistic Advocacy Really Means – Autistic Science Person

I co-sign that piece in its entirety.

When allies ask me what they can do, I usually say “amplify us, nobody else does” and “pay us”. Stimpunks exists, in part, to amplify and pay the people who educated us.

I’m adding another level to my allyship list: “buffer the trauma”.

  1. Amplify
  2. Pay
  3. Buffer

In my previous gig on a DEI team, I experienced the relief of abled and neurotypical allies buffering the trauma. Respite is a great feeling.

Amplify us, pay us, and buffer our trauma. We’re fighting for justice for all at the edges and intersections. Our designs, our societies, and the boundaries of our compassion are tested at the edges, where the truths told are of bias, inequality, injustice, and thoughtlessness.

We are the canaries. We are “the fish that must fight the current to swim upstream.” Give us a break.

Contemporary Progressive Education with the Human Restoration Project

Students and teachers are human beings. Schools must bring this to light.

The HUMAN RESTORATION PROJECT supports progressive educators in building systematic change within schools. By providing free resources, professional development, and materials, we can form a coalition of like-minded educators who can revolutionize the education system from the ground up.

This work doesn’t provide firm answers or simple solutions. These do not exist in solving the complex, nuanced issues of the education system which is rooted in inequity, lack of proper funding, and systemic racism, sexism, and greed. This primer outlines the philosophy of progressive education, which is the antithesis of the growing movement to test, retest, and dehumanize the education process.

It may challenge or conflict with one’s ideas – which is why this style of education is needed. Unless educators seek to deconstruct and rebuild the underlying systems of the system, little to no change will occur. Instead, we’ll see more and more educators become burnt out and demoralized as they continually try to make the broken systems work as promised.

A human-centered classroom is needed now more than ever. In a time of growing uncertainty, global challenges, and increased threats to democracy, children need space to question, reflect, and actualize a meaning to their lives. These young people, along with their educators, will build a new future of love, care, and respect for all.

Source: Primer: A Guide to Human Centric Education

The Human Restoration Project’s primer on human centric education outlines equity literate contemporary progressive education compatible with neurodiversity and the social model of disability.

A fantasy of ours at Stimpunks is to start a school for local neurodivergent and disabled people who are not served by public or private schools. “A human-centered classroom is needed now more than ever,” especially for those left out of “all means all”.

If there is ever a Stimpunks school, HRP’s Primer and Handbooks and the book “Timeless Learning: How Imagination, Observation, and Zero-Based Thinking Change Schools” would be foundational. They recognize that “creating paths to equity and access for all children remains the grand challenge of public education…”

Creating paths to equity and access for all children remains the grand challenge of public education in America.

Equity provides resources so that educators can see all our children’s strengths. Access provides our children with the chance to show us who they are and what they can do. Empathy allows us to see children as children, even teens who may face all the challenges that poverty and other risk factors create. Inclusivity creates a welcoming culture of care so that no one feels outside the community.

Source: Timeless Learning: How Imagination, Observation, and Zero-Based Thinking Change Schools (Kindle Locations 840-841, 878-881). Wiley. Kindle Edition.

Human centric education is inclusive instead of eugenic.

Sadly though, the social, political, and economic narrative of schooling in the past has been grounded in a “soft eugenics” belief that while some children have the capacity to become whatever they choose to be in life, others do not. This plays out in the decisions that educators make, often based on decontextualized data and confirmation biases that stem from immersion in traditions of education that did the same to us. Even if lip service is given to words such as equity, accessibility, inclusivity, empathy, cultural responsiveness, and connected relationships, schooling today is still far more likely to support practices from the past that have created school cultures in which none ​of those words define who educators really are, no matter what they aspire to be.

Consider how the “habitable world” concept developed by Rosemarie Garland‐Thomson, Emory University researcher and professor, sits at the core of the philosophy of educators who developed and now sustain the structures and processes of schooling that impact young people such as Kolion (Garland‐Thomson 2017b). Garland‐Thomson views public, political, and organizational philosophy as representative of one of “two forms of world‐building, inclusive and eugenic” (Garland‐Thomson 2017a). Unfortunately, often it’s the soft educational eugenics philosophy that is most often expressed in practice, if not in words, across the nation’s schools rather than the creation of habitable worlds that are inclusive of all learners.

If we want our schools to be learning ​spaces that reveal the strengths of children to us, we have to create a bandwidth of opportunities that do so. That means making decisions differently, decisions driven from values that support equity, accessibility, inclusivity, empathy, cultural responsiveness, and connected relationships inside the ecosystem. Those are the words representative of habitable worlds, not words such as sort, select, remediate, suspend, or fail.

Source: Timeless Learning: How Imagination, Observation, and Zero-Based Thinking Change Schools (Kindle Locations 908-920, 929-938). Wiley. Kindle Edition.

How do we get from eugenic to inclusive world building in our schools? HRP has a recipe that very much aligns with Stimpunks philosophy and experience.

HRP has identified twenty systems, summarized within 4 values statements, that must be changed for a human-centric, equitable system that creates a better future for all.

Learning is rooted in purpose finding and community relevance.

  1. Map a Path to Purpose
  2. Learn Experientially
  3. Connect to the Community
  4. Promote Literacy
  5. Create Cross-Disciplinary Classrooms

Social justice is the cornerstone to educational success.

  1. Support a Reflective Space
  2. Demand Inclusive Spaces
  3. Authenticate Student Voice
  4. Adopt Critical Pedagogy
  5. Utilize Restorative Justice

Dehumanizing practices do not belong in schools.

  1. Radically Reduce Homework
  2. Build Strong Relationships
  3. Eliminate Grading
  4. Redefine Assessment and End Testing
  5. Reform Food Systems

Learners are respectful toward each other’s innate human worth.

  1. Self-Direct Learning
  2. Support and Elevate Teachers
  3. Stay Buzzword Free
  4. Cooperate, Don’t Force Competition
  5. Support Multi-Age Classrooms

Source: The Need

A school run on such a philosophy would include us Stimpunks like no school has yet.

Stimpunks shouldn’t have to start our own school to access the inclusive world building of human centric, contemporary, progressive education. For the “all means all” promise of public education to include us, we need allies working “against rules and excuses – to convert an institution to a progressive model of education”.

We’re working – against rules and excuses – to convert an institution to a progressive model of education grounded in an “all means all” philosophy when it comes to every child participating in rich, experiential learning.

Source: Timeless Learning: How Imagination, Observation, and Zero-Based Thinking Change Schools (Kindle Locations 1036-1052). Wiley. Kindle Edition.

Stimpunks is happy to support the Human Restoration Project and its vision of contemporary progressive education.

The Neurodivergent Experience in Josephmooon’s “So Far So Good”

Our own Ronan is releasing an album. Ronan is lyricist for Josephmooon. You can read the story of their distributed collaboration on their blog:

These songs resonate with my autistic, bipolar, and disabled life. I’m super excited to add them to my favorite playlist, Chronic Neurodivergent Depressed Queer Punk: Punk Rock, the Social Model of Disability, and the Dream of the Accepting Community, where they will become part of my everyday coping.

Below, I’ll share lyrics from each song and relate them to my own, and the broader, neurodivergent experience using selected quotes from community writing.

  • Floats Boat
  • One Word
  • Long Ago
  • Up All Night
  • Out of Tune
  • Captolea
  • Busybodies
  • High in the Sky
  • Cost Time
  • Reusable Money
  • Check For
  • So Far So Good

The album “So Far So Good” will be available on streaming platforms on Oct 1. Preview and pre-order on iTunes.

Listen now.

Floats Boat

Is there something you’re not telling me

You’re not telling me what floats your boat

It can be anything you want it to be

Only you can decide what floats your boat

Let me tell you what floats my boat

It’s writing songs that change the world

Maybe just a little bit I said just a little bit

Can you please tell me what floats your boat

That’s all I want to know

One of The Five Neurodivergent Love Languages is listening to someone infodump. “Floats Boat” is an invitation to infodump about your SpIns.

SpIns and Infodumps

I don’t know who invented the phrase “special interest.” Probably some researcher. Autistic people don’t really love the term because the term “special” has become tied so closely with terms like “special needs,” which we resent.

Nevertheless, somewhere down the line “special interest,” commonly shortened to SpIn (“spin”), became the term for the characteristically-autistic tendency to develop an obsession with something specific and often obscure.

Some special interests are short lived, and some last the lifetime of the person; but, however long they last, they are intense, delightful, and a vital part of autistic culture.

So integral are special interests to autistic culture that autistic people will post about feeling depressed and unmotivated because they don’t have an active SpIn at the moment.

Having a special interest is like having a crush or being newly in love. It is consuming and delightful. We love to share our special interests and a common example of autistic empathy is encouraging others to talk in great detail- “infodump”- about their SpIns.

It is considered a sign of caring and friendship to encourage someone to talk to you about their SpIn- whether or not you actually share their interest- because nothing makes an autistic person happier than discussing, learning about, or sharing about, their SpIn.

It is also quite acceptable in autistic culture to “infodump” on a topic whenever it happens to come up. To autists (an insider short-hand for autistic people), the sharing of knowledge and information is always welcome.

Source: 7 Cool Aspects of Autistic Culture » NeuroClastic

“Floats Boat” offers a “sign of caring and friendship to encourage someone to talk to you about their SpIn.” It also offers subversion.

Only you can decide what floats your boat

This recognizes a fact about SpIns: they come from within. They run on intrinsic motivation, not extrinsic.

In preparing a new Afterword for the 25th-anniversary edition of my book Punished by Rewards, I’ve sorted through scores of recent studies on these subjects. I’m struck by how research continues to find that the best predictor of excellence is intrinsic motivation (finding a task valuable in its own right) – and that this interest is reliably undermined by extrinsic motivation (doing something to get a reward). New experiments confirm that children tend to become less concerned about others once they’ve been rewarded for helping or sharing. Likewise, paying students for better grades or test scores is rarely effective – never mind that the goal is utterly misconceived.

Source: It’s Not About Behavior – Alfie Kohn

In autistic communities, we advocate embracing the obsession.

Embrace the obsession. Special interests are “intimately tied to the well-being of people on the spectrum“. “Special interests have a positive impact on autistic adults and are associated with higher subjective well-being and satisfaction across specific life domains including social contact and leisure.” “In my study, I found that when the autistic children were able to access their intense interests, this brought, on the whole, a range of inclusionary advantages. Research has also shown longer-term benefits too, such as developing expertise, positive career choices and opportunities for personal growth. This underscores how important it is that the education of autistic children is not driven by a sense of their deficits, but by an understanding of their interests and strengths. And that rather than dismissing their interests as ‘obsessive’, we ought to value their perseverance and concentration, qualities we usually admire.” “…the autistic children in my study were turning to their strong interests in times of stress or anxiety. And there has certainly been a lot of research which shows that autistic children and young people find school very stressful. So it might be the case that when this autistic trait is manifested negatively in school, it is a direct result of the stresses that school creates in the first instance.” “[E]nabling autistic children to engage with their strong interests has been found to be predominantly advantageous, rather than deleterious, in school environments.” “Furthermore, longer-term benefits have been associated with the pursuit of intense interests, with relatively few negative effects overall, which in themselves might only occur if autistic people are pressured to reduce or adapt their interests.” “Having intense or “special” interests and a tendency to focus in depth to the exclusion of other inputs, is associated with autistic cognition, sometimes framed as “monotropism”. Despite some drawbacks and negative associations with unwanted repetition, this disposition is linked to a range of educational and longer-term benefits for autistic children.


Source: I’m Autistic. Here’s what I’d like you to know.

So, “can you please tell me what floats your boat?”

Maybe I can help you float your boat

We’ll write a song to sing along

And let it float away let it float away

Anything can float your boat

That’s all I want you to tell me

So everyone can see

One Word

I’ve not said the word to you

Afraid that you might say it too

“One Word” reminds me of a high school crush I could never talk to because of the tidal immensity of exposure anxiety and rejection sensitive dysphoria and the resulting situational mutism in their presence.

It wasn’t that the volume was too loud so much as that in the grip of an adrenaline rush everything was sensorily too much. The intense ‘pain’ was that the personal, individual, me-ness in it was unbearable. I was allergic to the experience of my own existence and the experience of hearing my own voice speaking from connected expression as me could, at times, be far worse than the terrible feeling you get hearing your own voice on an audio tape or answerphone.

Exposure Anxiety is the internal parent watching its vulnerable and exposed baby being stolen by the world outside or given away by ‘the self’; being robbed of control by what are felt as ‘outside forces’. Exposure Anxiety is a self-parenting survival mechanism, an intense often tic-like involuntary self-protection mechanism that jumps in to defend against sensed ‘invasion’. When it becomes chronic, it is self-perpetuating – like a boulder hurtling down a hill, gaining momentum. Chronic, uncontrolled, acute Exposure Anxiety is about addiction to your own adrenaline.

Exposure Anxiety makes it difficult to dare ‘expressive volume’ in a directly-confrontational (self-in-relation-to-other) world

Exposure Anxiety is about feeling your own existence too close up, too in your own face.

If I could draw you a picture of acute chronic Exposure Anxiety, I’d draw you a rainbow unseen within heavy stone walls. There’d be places in the stone where the cement had crumbled, been chipped away and some of the colour had come streaming out like a ray of light into the world. I’d draw you a picture of someone inside a prison, an invisible prison with replica selves on the outside, each a contortion, a distortion of the one you can’t see who can’t get out. I’d draw you a picture of someone avoidant with a social person waiting inside for the keys and a way out.

Source: Williams, Donna (2002-09-14T23:58:59). Exposure Anxiety – The Invisible Cage . Jessica Kingsley Publishers. Kindle Edition.

Exposure anxiety (EA) is a condition identified by Donna Williams in which the child or adult feels acutely self-conscious; it leads to a persistent and overwhelming fear of interaction.

Source: Exposure anxiety in autism | Network Autism

EA can be quite crippling as it it causes the person to feel acutely self-conscious and leads to a persistent and overwhelming fear of interaction. And that makes any attention from other people feel potentially threatening so that the child feels ‘exposed’ each time someone looks at him, talks to him or even compliments him.

Source: Autism and Exposure Anxiety. Don’t look at me! – Autism Daily Newscast

I dreamed of just the right situation where I would feel psychologically safe enough to unlock, like the calm of a quiet evening, away from the chaos and judgement of school.

When there’s a full moon in the sky

In the light of the night

“One Word” also evokes my solo polyamorous nature by offering the one word “to you and you and you and you”.

One word to say to you

To you and you and you and you

It wasn’t until looking into solo polyamory I realized I don’t have to feel guilty for having separate needs from my partner. Solo polyamory is the idea that people are autonomous beings who have different needs and wants, and alongside good communication and mutual respect between all partners, no one puts rules on each other because no one owns one another. There’s this expectation in mainstream society that if you’re a couple you should want to be together most of the time - but with solo polyamory, partners respect how much time you can set aside to see them based on work, hobbies and other people who are important to you. There’s no pressure to converge lives the longer you’re dating because with solo polyamory commitment and time together aren’t seen as mutually exclusive. In a solo polyamory group I recently joined on Facebook, I found a thread where a number of people on the spectrum talked about how finding solo polyamory has helped them work through their sensory sensitivities without feeling like there’s something wrong with them. If they need to leave a date because they’ve had too much stimuli for the day, their partners understand because they’ve had those essential conversations on what each other needs as an individual.

Source: How Polyamory Helped Me Advocate For My Needs As A Disabled Person | Thought Catalog

“One Word” is also just a rockin’ love song that’s a bit of a tease.

Long Ago

Long ago is long ago

Or right now right now don’t you know

Rejection sensitivity and exposure anxiety generate a lot of regrets and rumination on those regrets. My regrets come as flashbacks that travel in an instant from the long ago to “right now right now don’t you know.”

Long ago forever in the past

Long ago never can be changed

Pointless to be going back in time

So long ago so long long long ago

I know it’s pointless to go back, but I keep making the trip, usually involuntarily.

In other words, autistic people are indeed traumatised by a wider range of things than the teams were expecting. And diagnostic teams should be considering PTSD after a wider list of possible triggering events.

Source: Ann’s Autism Blog: Autism, Bullying, Post Traumatic Stress Disorder and Behaviour. The links?

One explanation for ASD and probable PTSD cooccurrence shown here may be that ASD serves as a vulnerability factor for PTSD. Hirvikoski and Blomqvist (2015) found that adults with ASD reported significantly higher subjective stress and poorer ability to cope with stress in everyday life, compared with typical adults. One’s subjective perception of his or her ability to cope with a specific stressor is central in defining the level of experienced distress (Karasek & Theorell, 1990). Individuals with ASD often show executive functioning difficulties (Kenworthy et al., 2008), which may impede their choice of appropriate coping strategies. Another aspect related to ASD that may affect individuals’ subjective distress level following trauma is sensory hypersensitivity (e.g. Horder et al., 2014), a factor that has been associated with vulnerability to PTSD (Engel-Yeger et al., 2013).

Source: Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions – Nirit Haruvi-Lamdan, Danny Horesh, Shani Zohar, Meital Kraus, Ofer Golan, 2020

I incessantly script in preparation for social interactions and relentlessly post-mortem the interactions afterwards. I replay some conversations over and over for decades and lifetimes. An anodyne, forgettable conversation for most can be a source of lifelong relived trauma for me. I’m a constantly ruminating engine of regret stuck in past moments I wish I could edit.

One chance to travel back in time

For days or weeks or months or years

Today is all but long ago

So won’t you come to me right now

Some things look so easy

But we can’t go back, no we can’t go back

When it’s not so easy you are not alone

So won’t you come to me right now

Right now right now maybe someday

Long ago is long ago

Now is now and not forever

“Long Ago” captures my yearning to unhook from rumination on what can’t be changed and live in the present. “Now is now and not forever.”

Up All Night

I’m staying up all night

All night all night that’s not right

Staying up all night

That’s what I’ve been doing

Up all night all night all night

Try to stay out of sight in the daytime

I do it a lot

I have been up all night all night all night

That’s not right alright that what I like to do

Well I sleep when it’s day and stay up all night

Insomnia is a research priority for autistic communities. At Stimpunks, we keep the hour-of-the-wolf.

We can joke fondly about it now, but my forty-two-consecutive-month campaign against a full night’s sleep nearly broke my parents. They managed to hone hour-of-the-wolf parenting into a fine art by the end of this waking nightmare.

Source: Kurchak, Sarah. I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder (p. 19). Douglas and McIntyre (2013) Ltd.. Kindle Edition.

Sleep is challenging – but crucial.

Autistic burnout isn’t a permanent state, however. One of the best ways for anyone to recover from burnout is rest, particularly sleep, according to Amelia Nagoski, the co-author of the best-selling 2019 book “Burnout: The Secret to Unlocking the Stress Response Cycle.” But autistic people have a harder time sleeping because of their neurological differences, according to a 2019 study.

Autistic people are more likely to sleep for shorter periods of time and experience lower-quality sleep, and they’re more likely to be night owls, the study found. Research on non-autistic adults shows that insomnia is a strong predictor of burnout, suggesting a similar link among autistic people with sleep disorders.

Ms. Nagoski, 44, addressed autistic people’s sleep woes in a recent YouTube video. “This essential thing that is fundamental to wellness is harder for autistic people,” she said.

Source: ‘The Battery’s Dead’: Burnout Looks Different in Autistic Adults – The New York Times

I was an insomniac as a kid. I’d stay up all night loaded with fear, anxiety, and hallucinations.

Over years and decades, the night became less about fear, and more about having the world to myself so I could read and write.

Stay out of sight

That’s how I write

Staying up all night

That’s what I do

How about you

I’m writing this blog post at 2AM, so cheers night-owls writing at wolf-hours.

Out of Tune

Lately I’ve been feeling out of tune out of tune

I don’t know why but I would like to know why

And I want to get back in tune

Out of tune that’s what I am

Being out of tune pains my head

(can’t get out of bed)

Hurts from being out of tune and

I just so want to get back in tune

Out of tune that’s what I am out of tune

Feeling out of tune with myself and the world has been a fixture of my autistic, bipolar life. “Out of Tune” resonates broadly across neurodivergent experience. It makes me cry.

It concludes hopefully, though.

When I get back in tune

My good days will come back and I’ll feel better

If you’re feeling out of tune like I am now

Get back in tune like I said

I will get back in tune

But I don’t know when (hopefully soon)

I know it could take time

But let’s make it happen

Through the self-awareness gained from neurodiversity and disability communities and a chemical assist from Sertraline and Rexulti, I’m sufficiently in tune these days. It took time, but we made it happen.

There will be moments of de-tuning where I once again don’t know when I will get back in tune. I’ll play this song and work my way back with continuous fluid adaptation.

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

Captolea

Stay inside said Sheriff Carroll

He looks frightened so I’m holding tight

In my house with a double barrel

Ready to shoot Captolea dead on sight

Oh no there’s Captolea

He’s a killer with a gun and a knife

Stay away from him

Don’t say anything to him

I don’t want to die

I could interpret this as being about depression and reactivity, but I’ll let it stand as a good old-fashioned outlaw murder ballad.

Busybodies

Run away run away

Beware of busybodies

They are everywhere

Beware of busybodies

They just want to know everything

They ask questions yeah

Way too many questions so

Beware of busybodies

If you see them keep hiding

In a bunker if you find one

Beware of busybodies

They are in a lot of places

There they are right there and there

Talking trash about me and probably about you too

Run away, stay away

“Busybodies” reminds me of the “Make it Stop” campaign.

In the video, an autistic student navigates a gauntlet of questions and sensory overwhelm.

I’ve always struggled with questions. My school career was marked by situational mutism in the face of questions. Exposure anxiety and rejection sensitivity made talking difficult to impossible in all but the most psychologically safe circumstances.

I also struggle with answering within the confines of another’s framing. So many neurotypical and abled assumptions and norms are baked in that I can’t answer unless I start by rejecting the framing.

Zero (they/their) on Twitter: “I think the most autistic way to answer a question is to dispute the premise of the question itself. E.g. “would you rather go to a party or a library?” Like, what sort of party? Who’s going to be there? Which library? Are the rules of the library clearly stated and enforced?” / Twitter

Dealing with all of the questions and bad framing, daily, is exhausting.

“Empathy is not an autistic problem, it’s a human problem, it’s a deficit in imagination.” We can’t truly step into another neurotype, but we can seek story and perspective. These videos offer a taste of what it is like to endure the daily gauntlet of neurotypical questioning. To not respond to questions is to be called rude. To not respond will get you publicly color-coded as an orange or red and denied perks that the compliant NT kids get. To not exchange this social styrofoam is to be a problem. Make it stop. Empathize with what it is like to navigate these interactions while dealing with the sensory overwhelm of raucous environments not designed for you.

Source: I’m Autistic. Here’s what I’d like you to know.

Neurodivergent people are forced to attempt understanding of neurotypical people and society. We are constantly judged and assessed by neurotypical standards. We must analyze and interpret in order to conform and pass so that we can get the sticker, the “cool kid cash”, and the promotion. There is almost no reciprocity in return.

Source: The Double Empathy Problem: Developing Empathy and Reciprocity in Neurotypical Adults

There are entire industries of Busybodies pathologizing neurodivergent life, applying bad framing, asking the wrong questions, and “talking trash about me and probably about you too”.

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

Source: The Gift: LD/ADHD Reframed

Now listen here busybodies

I’ve got something to say to you

Go away and don’t come back

We don’t want you busybodies

We’re tired of bad questions and bad framing. As an exercise, let’s flip the pathologizing lens.

Neurotypical syndrome is a neurobiological disorder characterised by preoccupation with social concerns, delusions of superiority, and obsession with conformity. There is no known cure.

Source: NeuroTribes by Steve Silberman review – an enlightened take on autism and difference

Perhaps the most obvious giveaway is an NT’s tendency to make “small talk” or to want to “chat” with you. While small talk appears to be nonfunctional, for NTs it serves a very specific purpose. It’s a good idea to humor them and participate to whatever degree you can tolerate. If you’re patient with them, many NTs will soon feel comfortable enough to move from small talk to more interesting, in-depth conversations.

Source: What is neurotypical?

Another odd behavior neurotypicals exhibit is their habit of “small talk.” From what we can tell, small talk appears to be talking just for the sake of talking. A “how are you doing” results in the same non-answer of “fine.” It seems unlikely everyone everywhere at all times is truly “fine,” so it seems that that is a non-answer to what is in fact a non-question. It has been observed that if you give an actual answer to the question, the questioner gets frustrated and impatient, as though they are annoyed that you would actually answer them. A whole conversation can actually go on like that, with general questions giving rise to pat answers so that you could actually change out any pair of people and you would end up with the same conversations each time. The vast majority of their conversations are not about anything of any substance, and, again, they seem positively annoyed if you try to engage them in such a conversation. As a group neurotypicals seem positively frivolous most of the time.

Source: A Pathological Look at Neurotypical Behavior – An Intense World

High in the Sky

I am high up in the sky

Way above the Northern lights

On the way to the moon

Far above the stars

High up in the sky

Life is never too long

But life can be too short

With people dropping bombs all over the world

From high up in the sky

High up in the sky

I love that second verse. It’s a flash of the autistic sense of justice. I often want to disassociate from a bomb dropping world that is way too intense.

I’m in the sky now, for just as long as I need to be

Almost to the moon that’s my destiny

When I get back we’ll talk about it then

And I can’t wait to see you again my friend

High up in the sky

Avoiding meltdown and burnout requires managing sensory diet, and sometimes that means retreating into your head and heading High Up in the Sky, detaching from an intense world designed against you.

Cost Time

Everything costs time everything

Everything costs time yes it does

Costs time getting out of bed

Doctor says you got your head in the fog

Got to cook and eat your food

Costs time to walk your dog

Costs time no matter what you do

Take a shower and get in the pool

Drive a car hang out with your friends

Go back in time or forward again

“Cost Time” speaks directly to chronic spoonie life. Spoon theory is a popular metaphor for energy expenditure in the disability community.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

Source: The Spoon Theory written by Christine Miserandino – But You Dont Look Sick? support for those with invisible illness or chronic illness

Everything costs time, especially when you are chronically ill and only get so many spoons.

Reusable Money

Reusable money that’s what I got

Use it every day and I never run out

I spent 10 dollars I still got that 10 dollars

Feels so good, that’s how I get around the world

Reusable money is my precious yes it is

Use it every day for whatever I want

I can’t run out I always have enough money

And it’s really not an option that’s how I get around the world

“Reusable Money” is a rollicking fantasy about having as much money as you can spend and traveling the world.

Beneath that, though, I feel the weight of our journey fighting for scraps in systems designed on “artificial economies of scarcity”.

Bascom tells me that experiences like ours happen because disability service systems are never designed to support people with disabilities but are “about managing access to scarce resources. We start with the assumption that these resources are limited, so you have to prove over and over again that you need them more than anyone else. If we as a society invested more resources in supporting people with disabilities, we could redesign our systems accordingly.”

Source: I Shouldn’t Have to Dehumanize My Son to Get Him Support | The Nation

Society mints billionaires more billions during a pandemic while neurodivergent and disabled people struggle against artificial scarcity in systems designed against us. “Reusable Money” invites a fantasy of fungibility where that money helps us “get around the world”.

Check For

“Check For” is delightfully enigmatic. It’s “some very cloudy ice”.

Check check for you my friend

Check it once check it twice

I’m in a good mood what about you

Just a piece of cloudy ice

Check check check over here

Ain’t nobody got nothin’ to say

Check for a deep pool a deep deep pool

Check for a cold day a very cold day

The Stone Age should’ve made me strong

Banging on rocks all day long

Ain’t got no money, just got this song

Waiting for someone to sing along

Check for the top, the top of us all

Check for a flag but not a flag that is cruel

Check for the guitar I’m playing right now

Check for the rule ‘cuz it’s a good rule

In the Stone Age I did not belong

On my computer all day long

Ain’t got no money then move along

Unless you want to help me sing my song

Check check for you my friend

Check it once then we’ll check it twice ‘cuz

It’s a cold day a very cold day

And you’re some very cloudy ice

I’ll reach for a neurodiversity angle by saying: I would not belong in the Stone Age either. I need my computer. It connects me with other cloudy ice folks who “help me sing my song”.

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.

Until one day… you find a whole world of people who understand.

The internet has allowed autistic people- who might be shut in their homes, unable to speak aloud, or unable to travel independently- to mingle with each other, share experiences, and talk about our lives to people who feel the same way.

We were no longer alone.

Source: 7 Cool Aspects of Autistic Culture » NeuroClastic

One could make the argument that autistic people created the very computer environment autistic people are most comfortable in.

In fact, there is pretty good evidence that most of the science, technology, and arts you enjoy are the products of autistic minds.

Source: Welcome to the World Autism Made – An Intense World

So Far So Good

So far so good

I hope it stays like this forever

So far so good

But the wolf is at my door

Here at Stimpunks, we live in a Cavendish bubble of respite that is designed by neurodivergents, for neurodivergents.

Since reading NeuroTribes, I think of psychologically & sensory safe spaces suited to zone work as “Cavendish bubbles” and “Cavendish space”, after Henry Cavendish, the wizard of Clapham Common and discoverer of hydrogen. The privileges of nobility afforded room for his differences, allowing him the space and opportunity to become “one of the first true scientists in the modern sense.”

Let’s build psychologically safe homes of opportunity without the requirement of nobility or privilege. Replace the trappings of the compliance classroom with student-created context, BYOD (Bring Your Own Device), and BYOC (Bring/Build Your Own Comfort). Let’s hit thrift stores, buy lumber, apply some hacker ethos, and turn the compliance classroom into something psychologically safe and comfortable to a team of young minds engaged in passion-based learning. Inform spaces with neurodiversity and the social model of disability so that they welcome and include all minds and bodies. Provide quiet spaces for high memory state zone work where students can escape sensory overwhelm, slip into flow states, and enjoy a maker’s schedule. Provide social spaces for collaboration and camaraderie. Create cave, campfire, and watering hole zones. Develop neurological curb cuts. Fill our classrooms with choice and comfort, instructional tolerance, continuous connectivity, and assistive technology.

In other words, make space for Cavendish. Make spaces for both collaboration and deep work.

Source: Classroom UX: Designing for Pluralism

Burnt out friends who’ve stayed within our Cavendish space for peer respite have remarked how hard it is to go past our red gate, the boundary of sanctuary from the waiting wolves of an ableist world.

I like my way want to keep it that way

For as long as I live

Precious to us all to be alive

So far so good

In this world of time

Our Cavendish space has three acres worn with our stim trails. We each have our ways, our patterns, our habits, our stims that soothe us, and we each have space to do them.

“Some autistic people’s needs will conflict with each other. For example, some autistic people may need the TV playing to calm down, as it can help to focus on specific sounds. But for others this may cause more stress depending on their mental state. Additionally, some autistic people may need to stim to feel relaxed and comfortable, or it may be involuntary when they are stressed, but noises they make (e.g. verbal stims), could really stress another autistic person out. I think the key here is space.”

Source: “It’s Not Rocket Science” – NDTi

We’ve been living So Far So Good within a remit of inclusion, access, and constancy.

But wolves are at the door in this world of time.

August at Stimpunks: Our Blogging, Our Reading, Our Giving

Our Blogging

After taking a blogging break for the first two weeks of August, we came back primed with fresh reading and new perspectives on previous reading.

Our Reading

Books

Studies

Articles

Our Giving

We sent US$13k to neurodivergent and disabled people in August in support of their work and lives.

We did a week of peer respite on the Irie Smial Preserve with a burnt out neurosibling in mental health distress and housing crisis. They needed a break, a safe space, and peers who understood. We all helped each other and learned a lot.

We love the peer-run respite model and want to support folks in Texas doing this work. Contact us.

Our Blogging Queue

  • We Long to Belong: In Search of Psychological Safety
  • Being Legible: Legibility as Social Status, Situational Privilege, and Belonging
  • Try Again: Mercy is Necessary to Learner Safety
  • Online Classes Are an Equity Requirement: If Opening Schools Is About Equity, Why Aren’t We Listening to Those Most Impacted?
  • Vestibular Issues with Parallax Scrolling and Transition Animations
  • Psychological Safety in Families
  • The Neurodivergent Experience in Josephmooon’s “So Far So Good”
  • It’s Not Rocket Science: Considering and Meeting the Sensory Needs of Autistic Children and Young People
  • Craft, Flow, and Cognitive Styles
  • Equity Versus Equality
  • It’s About Equity
  • Accessible, Equity Literate Care
  • Disability Dongles and Cultural Engagement
  • Wheelchair Flow Patrol
  • The Bipartisanship of Behaviorism
  • Practicing Pluralism: Minority Stress, Harm Reduction, and Triage
  • Accommodations and Emotional Bids in Neurodiverse Relationships
  • Taking Control of the Mask: Unmasking as a Spoiled Identity

Unlearning Deficit Ideology and the Scornful Gaze

Briefly, deficit ideology is a worldview that explains and justifies outcome inequalities- standardized test scores or levels of educational attainment, for example-by pointing to supposed deficiencies within disenfranchised individuals and communities (Brandon, 2003; Valencia, 1997a; Weiner, 2003; Yosso, 2005). Simultaneously, and of equal importance, deficit ideology discounts sociopolitical context, such as the systemic conditions (racism, economic injustice, and so on) that grant some people greater social, political, and economic access, such as that to high-quality schooling, than others (Brandon, 2003; Dudley-Marling, 2007; Gorski, 2008a; Hamovitch, 1996). The function of deficit ideology, as I will describe in greater detail later, is to justify existing social conditions by identifying the problem of inequality as located within, rather than as pressing upon, disenfranchised communities so that efforts to redress inequalities focus on “fixing” disenfranchised people rather than the conditions which disenfranchise them (Weiner, 2003; Yosso, 2005).

At the core of deficit ideology is the belief that inequalities result, not from unjust social conditions such as systemic racism or economic injustice, but from intellectual, moral, cultural, and behavioral deficiencies assumed to be inherent in disenfranchised individuals and communities (Brandon, 2003; Gorski, 2008a, 2008b; Valencia, 1997a; Yosso, 2005).

And this is the surest sign of deficit ideology: the suggestion that we fix inequalities by fixing disenfranchised communities rather than that which disenfranchises them. This, then, is the function of deficit ideology: to manipulate popular consciousness in order to deflect attention from the systemic conditions and sociopolitical context that underlie or exacerbate inequities, such as systemic racism or economic injustice, and to focus it, instead, on recycling its own misperceptions, all of which justify inequalities (García & Guerra, 2004; Jennings, 2004). It deflects our scornful gaze from the mechanisms of injustice and the benefactors of these mechanisms, and trains it, instead, on those citizens with the least amount of power to popularize a counter-narrative, just as the dominant “achievement gap” discourse draws attention away from underlying systemic conditions, such as growing corporate control of public schools, and pushes it toward “at-risk” youth from “broken” homes whose “culture of poverty” impedes them from “making it.” Deficit ideology defines every social problem in relation to those toward the bottom of the power hierarchy, trains our gaze in that direction and, as a result, manipulates the popular discourse in ways that protect and reify existing sociopolitical conditions (Brandon, 2003; Yosso, 2005).

Source: Unlearning Deficit Ideology and the Scornful Gaze: Thoughts on Authenticating the Class Discourse in Education

I really like that definition of deficit ideology and its function.

This, then, is the function of deficit ideology: to manipulate popular consciousness in order to deflect attention from the systemic conditions and sociopolitical context that underlie or exacerbate inequities, such as systemic racism or economic injustice, and to focus it, instead, on recycling its own misperceptions, all of which justify inequalities.

Use these definitions when evaluating mindset marketing. Where are you directing the scornful gaze? Are you directing it “on those citizens with the least amount of power to popularize a counter-narrative”. We are constantly spoken over in the neurodiversity and disability rights movement by narratives that direct the scornful gaze on us instead of on ableist systems. We spend so much time and energy doing counter-narrative that is out-amplified by orders of magnitude.

It becomes easier, then, to train the mass consciousness to pathologize disenfranchised communities—to, in effect, blame them for their own disenfranchisement. Once that scornful gaze down the power hierarchy is in place, so is established the justification for maintaining existing social, political, and economic conditions, such as gross inequities in access to healthcare or educational opportunity, or the waning of social programs and supports for disenfranchised communities.

I’m adding “scornful gaze” to my vocabulary. It and the “conquering gaze from nowhere” are useful for detecting when we’re using the framing of deficit ideology.

Check your gaze.

Previously,

Spiky Profiles, Peripheral Minds, and Evolutionary History

In that same interview, when he was asked about what would happen to society if autism was eliminated, he said, “That goes to the larger issue that we wrestle with all the time around [artificial intelligence]. Part of what makes us human are [sic] the kinks. They’re the mutations, the outliers, the flaws that create art or the new invention, right? We have to assume that if a system is perfect, then it’s static. And part of what makes us who we are, and part of what makes us alive, is that we’re dynamic and we’re surprised.”

Source: Garcia, Eric. We’re Not Broken: Changing the Autism Conversation (p. 22). HMH Books. Kindle Edition.

Via:

That quote appears in Eric M. Garcia’s new book “We’re Not Broken” and brings to mind my blog post “Cognitive diversity exists for a reason.

One of the quotes featured in that post reminds me of the spiky profiles of neurominorities.

“there are no superior genes, only genes that provide advantages with a tradeoff for other disadvantages” (Kozubek in Scientific American, 2016)

Source: Is Autism a Stress Adaptation? – The Peripheral Minds of Autism

Our spiky profiles are much about tradeoffs.

There is consensus regarding some neurodevelopmental conditions being classed as neurominorities, with a ‘spiky profile’ of executive functions difficulties juxtaposed against neurocognitive strengths as a defining characteristic.

A definition has emerged for psychologists and educators which positions neurodiversity ‘within-individuals’ as opposed to ‘between-individuals’. To elucidate: the psychological definition refers to the diversity within an individual’s cognitive ability, wherein there are large, statistically-significant disparities between peaks and troughs of the profile (known as a ‘spiky profile’, see Fig. 1). A ‘neurotypical’ is thus someone whose cognitive scores fall within one or two standard deviations of each other, forming a relatively ‘flat’ profile, be those scores average, above or below. Neurotypical is numerically distinct from those whose abilities and skills cross two or more standard deviations within the normal distribution.

Most humans are average in all functional skills and intellectual assessment, some excel at all, some struggle in all and some have a spiky profile, excelling/average/struggling. The spiky profile may well emerge as the definitive expression of neurominority, within which there are symptom clusters that we currently call autism, ADHD, dyslexia and DCD; some primary research supports this notion. In the future, these may shift according to our educational and occupational norms such as social demands, sedentary lifestyles, literacy dependency and automation of gadgets. To elucidate, although there are clear biological markers for those with a spiky profile which lead to observable, measurable psychological differences, there is nothing innately disabling about those differences when we consider a traditional, tribe-based community of humans. Within the biopsychosocial model of neurodiversity, understanding work-related intervention and treatment becomes more about adjusting the fit between the person and their environment than about treating a disorder. Critical review of the extant biopsychosocial research supports the social model proposition that the individual is not disabled, but the environment is disabling.

Source: Neurodiversity at work: a biopsychosocial model and the impact on working adults | British Medical Bulletin | Oxford Academic

We’re the kinky outliers, the peripheral minds. We’ve always been here, living and working the edges, creating dynamism and surprise, “bringing value to cooperative goals”.

This theory proposes that throughout history we evolved working together in villages and communities. The core majority were a group of similar-minded individuals that could get along easily and keep the peace. They evolved to process and prioritize information for sociability. They were adept at imitation, following the crowd and working with others. Because we know from the work of Dr. Fisher and Dr. Michael Lesser that these personalities were dispersed in such a way as the periphery were the more rare personality types. More interested in things and tinkering, exploring, telling stories and taking up causes. These different groups, or personalities, processed information uniquely and had different priorities and motivations. They were innovators, explorers, protectors, leaders, scientists, geeks, artists and creatives (Lesser and Kapklein, 2003). These neurodiverse outliers processed and experienced the world very differently than the more sociable core. However, because of both the core and the diverse Peripheral Minds we thrived with each unique personality bringing value to cooperative goals (Bergmüller et al., 2010; Smaldino et al., 2013).

Source: Is Autism a Stress Adaptation? – Peripheral Minds of Autism

Throughout our history, we have always had communities and villages with a core majority group of stabilizing, social, community-oriented individuals, and we always had the periphery minds, the outliers, those who needed to take in more information from their environments. The hyper-aware and vigilant; the innovators, the explorers, the protectors, the athletes, the hunters, the scientists, the geeks, the artists and the creative.

Source: Theory of Peripheral Minds of Autism – Peripheral Minds of Autism