The right to learn differently should be a universal human right that’s not mediated by a diagnosis.

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

Source: The Gift: LD/ADHD Reframed

My family lives this system, which is why I really appreciate Albemarle County Public Schools’ Seven Pathways, which states:

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

Source: Seven Pathways

Yes to all of that.

I like Albemarle’s approach to education technology. I write about them in “Classroom UX: Designing for Pluralism” and “Communication is oxygen. Collaborative indie ed-tech.

They recognize the structural, institutional, and framing problems Jonathan Mooney describes in this great talk on reframing LD and ADHD (which is the source of the title and opening quote in this blog post you’re reading).

I transcribed my favorite moments from the talk in “The Gift: LD/ADHD Reframed”. I’ll conclude with selections making the case for two of my rules of thumb for inclusion.

  • agent > patient
  • identity > diagnosis

The right to learn differently should be a universal human right that’s not mediated by a diagnosis.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Source: The Gift: LD/ADHD Reframed

Accessibility, Access Intimacy, and Forced Intimacy

These pieces on access intimacy and forced intimacy by Mia Mingus very much resonate with my experience. Forced intimacy is the continuous submission to patient hood required to access the right to learn, work, and live differently. K-12 SpEd families, higher ed students, and workers needing accommodations regularly experience forced intimacy. Forced intimacy “chips away at your soul. Every box you tick, every sentence about your ‘impairment’ and ‘needs’ becomes part of the narrative of your identity.

Forced intimacy is a cornerstone of how ableism functions.” “Forced intimacy is the opposite of access intimacy.” “Access intimacy is that elusive, hard to describe feeling when someone else ‘gets’ your access needs.” That feeling is rare in the abundantly ableist medical and deficit models, though I have experienced it a few times, notably with neuropsychiatrists who noticed and met my sensory needs with a quiet, no-big-deal attitude. They understood that compassion and good user experience make for better data and better outcomes.

My moments of access intimacy are accompanied by floods of relief. The usual mountain of anxiety, miscommunication, and empathy gaps need not be scaled. “Your body relaxes and opens up with someone when all your access needs are being met.

My most profound moments of access intimacy are when I meet an educator or healthcare worker conversant in neurodiversity and the social model of disability and respectful of identity-first language.

Treating my identity not as a disorder, but as a difference, one that matters in helping me and understanding me, is powerful compassion that makes for access intimacy.

Selected quotes:

There are many ways to describe intimacy. For example, there’s physical intimacy, emotional intimacy, intellectual, political, familial or sexual intimacy. But, as a physically disabled woman, there is another kind of intimacy I have been struggling to name and describe, what I have been calling “access intimacy.”

I have begun using the term loosely and am still realizing different aspects of it. This is in no way a complete describing of it, instead, this is an initial naming and the beginnings of giving it shape. I am offering it as something that has been useful for me and I hope is useful to others to describe all different kinds of access, not just in relation to disability. I think Access, as a framework, is powerful for so many of our lives. Here, I am speaking from my own lived experience as a physically disabled person but I know access intimacy can also happen in many different ways for mamas and parents, women of color, queer and trans folks, etc… Anyone can experience access intimacy.

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

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

Source: Access Intimacy: The Missing Link | Leaving Evidence

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.

The contradiction of having to survive in the oppressive world you are trying to change is always complicated and dehumanizing.

Source: Forced Intimacy: An Ableist Norm | Leaving Evidence

Patient advocate and health policy attorney Erin Gilmer also writes on access intimacy.

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

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

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

Neurodiversity and Unilateral Accommodationism

Lately, I’ve seen the neurodiversity movement presented in terms of unilateral accommodationism by detractors of the “Neurodiversity Lobby”.

Here are a few examples anonymously cribbed from Twitter.

Do you believe autistic people should cultivate ourselves, or should society just accommodate us with no effort on our parts?

Neurorealism means that autistic people should cultivate ourselves as far as is reasonable, and other people in society should accommodate ourselves as far as is reasonable. This is bilateral accommodation, and it is generally rejected by the Neurodiversity lobbyists.

The Neurodiversity lobby advocates unilateral accommodationism.

I’m not hanging out in every pocket of the greater neurodiversity universe, but around the watercoolers I lurk, accommodation is usually couched not in unilateral terms, but in terms of bridging the double empathy gap and moving from the framing of accommodation to the framing of inclusion and acceptance.

Accommodation encourages the harmful ableist tropes of people being “special” and “getting away with” extra “privileges” and “advantages”. Accommodation is fertile ground for zero-sum thinking, grievance culture, and the politics of resentment. The terrain of accommodation is hostile and fraught. The topography is designed for attrition. Navigating it consumes spoons while fueling internalized ableism, anxiety, depression, and burn out. We must change the framing to survive. We must change the default.

A big part of our susceptibility to issues like anxiety has to do with how we were slowly socialized, either implicitly or explicitly, to believe that an autistic lifestyle is something that is defective and therefore needs fixing. A recent Independent article sums up the strong link between lack of autism acceptance and the development of mental health disorders in autistic people: Research shows that lack of acceptance externally from others and internally from the self significantly predicts depression and anxiety in young adults with autism.

Source: THINKING PERSON’S GUIDE TO AUTISM: Mental Health and Autism: Why Acceptance Matters

Social model families are real families preparing our kids for a real world where neurodivergent people have shortened lifespans, higher unemployment, and higher likelihoods of ending up under state control or being killed by law enforcement. We have to prove our disabilities and “disorders” and identities over and over to get any wiggle room to be different and learn differently in our resentful compliance cultures. We must submit ourselves to patient-hood and bear the language of deficit and disorder as identity.

That wiggle room to learn differently isn’t so wiggly, because what you earn upon clearing the many hurdles of accommodation is segregation and access to a disability industrial complex that pathologizes your identity and seeks to suppress your differences through behaviorism.

My experience with special education and ABA demonstrates how the dichotomy of interventions that are designed to optimize the quality of life for individuals on the spectrum can also adversely impact their mental health, and also their self-acceptance of an autistic identity. This is why so many autistic self-advocates are concerned about behavioral modification programs: because of the long-term effects they can have on autistic people’s mental health. This is why we need to preach autism acceptance, and center self advocates in developing appropriate supports for autistic people. That means we need to take autistic people’s insights, feelings, and desires into account, instead of dismissing them.

Source: THINKING PERSON’S GUIDE TO AUTISM: Mental Health and Autism: Why Acceptance Matters

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

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

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

Source: The Gift: LD/ADHD Reframed

Accommodation gets you more deficit model and more medical model, but rarely compassion. Compassion and acceptance are practical and effective magic. They remedy a lot of problems and contribute to psychological safety. Acceptance matters. Accommodationism, unilateral or the usual, doesn’t get you much of it.

We’re not preparing our kids for unilateral accommodationism or universal acceptance; we’re preparing them for a journey against odds and equipping them with a social model identity, the tools of self-advocacy, and the support of their neurosiblings and cousins so that they can help improve our systems for themselves and those who come next.

So far, I find the unilateral accommodationism line too reductionist. It smashes nuance out of the neurodiversity movement I know and discounts a whole lot of people who are doing the quiet, back-and-forth, iterative work in our schools, workplaces, and institutions of opening minds to social model perspectives. “Unilateral accommodationism” suggests neurodivergent and disabled people have the power and that there is anything resembling a good faith effort to meet us even halfway. It smacks of resentment.

At its core, intersectionality is about nuance and context.” Likewise with neurodiversity. My neurodiversity is about nuance and context. It’s about the “foregrounding of complexity as the baseline”.  It’s about structural ideology and equity literacy. It’s about challenging the “violence of the norm” and the “grounding narrative of exclusion” that is neurotypicality.

Neurodiversity is a movement that celebrates difference while remaining deeply nuanced on questions of (medical) facilitation and the necessity of rethinking the concept of accommodation against narratives of cure. The added emphasis on neurology has been necessary in order to challenge existing norms that form the base-line of existence: the “neuro” in neurodiversity has opened up the conversation about the category of neurotypicality and the largely unspoken criteria that support and reinforce the definition of what it means to be human, to be intelligent, to be of value to society. This has been especially necessary for those folks who continue to be excluded from education, social and economic life, who are regarded as less than human, whose modes of relation continue to be deeply misunderstood, and who are cast as burdens to society.

Nonetheless, I think it’s fair to say that this enhanced perceptual field is an aspect of much autistic experience and something neurotypicals could learn a lot from, not only with regard to perception itself, but also as concerns the complexity of experience.

Neurotypicality is a grounding narrative of exclusion. The neurotypical is the category to which our education systems aspire. It is the category to which our ideas of the nuclear family aspire. And, it is the category on which the concept of the citizen (and by extension participation in the nation-state and the wider global economy) is based.

In the context of education, which is the one I am most knowledgeable about, the mechanisms for upholding the neurotypical standard are everywhere in force. Every classroom that penalizes students for distributed modes of attention organizes learning according to a neurotypical norm. Every classroom that sees the moving body as the distracted body is organized according to a neurotypical norm. Every classroom that teaches predominantly for one mode of perception is organizing its learning according to a norm. Every classroom that knows in advance what knowledge looks and sounds like is working to a norm.

Having “special needs” classrooms upholds neurotypicality, for instance, as the dominant model of existence. Drugging our children because of their attention deficit is upholding a neurotypical norm. Sending our black and indigenous children to juvenile detention centers in disproportionate numbers is upholding a neurotypical norm which takes, as neurotypicality always does, whiteness as the standard.

To engage with neurodiversity is to speak up about the extraordinary silence around neurotypicality and to acknowledge that we do not question ourselves enough as regards what kinds of bodies are welcomed and supported in education, and in social life more broadly. It is still far too rare that we discuss neurotypicality as that which frames our ways of knowing, of presenting ourselves, of being bodies in the world.

The violence of the norm that is imposed without ever having to be spoken as such is debilitating. Not only does it normalize education, siphoning out difference of all kinds, but it also forces all bodies who want to be recognized as “knowledgeable” (and thus human) to be organized within an incredibly unimaginative matrix.

Neurotypicality as mode of knowledge policing builds on what it considers “direct” communication.

What is needed are not more categories but more sensitivity to difference and a more acute attunement to qualities of experience.

Source: Histories of Violence: Neurodiversity and the Policing of the Norm – Los Angeles Review of Books

Intersectionality is a structural theory about processes and systems that make our identities mean something in different contexts.

Intersectionality’s raison dêtre is to reveal the systems that organize our society. Intersectionality’s brilliance is that its fundamental contribution to how we view the world seems so common-sense once you have heard it: by focusing on the parts of the system that are most complex and where the people living it are the most vulnerable we understand the system best. Mark Lilla and others who critique this view of the body politic, reducing it to the caricature of “identity politics”, refuse to engage intersectionality’s most powerful empirical truth: we all have intersectional identities and all of them matter, if not all in the same way.

Source: The Intersectional Presidency – Tressie McMillan Cottom – Medium

See also,