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

I’m a big fan of Jonathan Mooney’s neurodiversity advocacy. So much of the work of neurodiversity and disability advocacy is getting folks to reframe from the medical and deficit models to the social model. Mooney is good at this reframing.

Here are some selected quotes from a recent interview with Mooney at Longreads where he shares his journey through school and reframes deficiency as difference.

Reframe these states of being that have been labelled deficiencies or pathologies as human differences.

The ultimate thing we should be fighting for is to not have to pathologize yourself to get your individual needs met. Something’s wrong with a system that requires parents and children to say, “I am sick or defective.”

We need to have universally designed systems designed around the reality of human variance opposed to the myth of human sameness.

We privilege some brains over other brains. We privilege some bodies over other bodies. And that gets embedded in our institutions.

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.

Accommodation is fundamentally about not changing the person but changing the environment around the person.

It’s going to be not fixing what’s wrong with them that changes their life, it’s gonna be building on, celebrating, and scaling what’s right with them.

When we say that somebody “overcame” dyslexia, cerebral palsy, whatever it is, we imply that that state of being is inherently deficient and it’s a problem inside of them.

I didn’t overcome dyslexia; I overcame dysteachia.

It’s not a problem in the person; it’s not a problem with the difference; it’s a problem in the interaction between a difference and a context built for the myth that we should all be the same.

Elevate ableism as one of the injustices of our world.

I’m tremendously optimistic about the broad cultural movement around equity, diversity, and inclusion. And I think we need to hold on to that as a culture. And we need to demand that that core philosophical and ethical commitment to having a world that doesn’t just work for some, but works for all, starts to come into our systems and we to some real difference in our systems. I think we have to fight for that. It ain’t going to happen on its own.

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

Mooney is an engaging and inspiring talker. Give the entire episode a listen.

More from Jonathan Mooney:

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