It really is exhausting and absurd.
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.
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.
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.
- The Gift: LD/ADHD Reframed
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
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).
- agent > patient
- identity > 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