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.
Dyslexia is not a disease, it is an identity. An identity is not something one cures; it is the basis of community and is an element of self you aim to understand and embrace. My hope is that you and your child will learn to own dyslexia, to understand it, and ideally, to celebrate it.
This book— and your mission as a parent— is about moving the model for your child from dyslexia as disease to dyslexia as identity, an identity we can all be proud of.
Most schools and reading programs designed for remediation of dyslexia are based on the idea that dyslexia equals brokenness. Their aim is to transform the child into a person who can read without problems. But I’m here to tell you that’s just wrongheaded. I’ve learned that if you make your primary goal teaching your child to read or spell just like every other child, you’re going to decrease your child’s chances of achieving success. It’s like telling a person in a wheelchair that she needs to put in more time to learn how to walk.
I am introducing these terms to address an underlying bias in our schools: that eye reading is the only form of reading. You can help move the needle on this limited assumption by using the terms eye reading, ear reading, and finger reading yourself and explaining them to your child. We need to celebrate children’s love of ideas and quest for knowledge and give them permission to not like standard books at the same time! When we give kids opportunities to gather information and explore ideas in other ways, they will thrive.
Focusing on eye reading overlooks the real goals of education, which are learning, independent thinking, and mastering the ability to make new connections in the world of ideas.
A central theme in this book is that we must question what we are taught is the “normal” way to do things, and instead integrate multiple ways for our children to access information.
If you are a dyslexic person or the parent of a dyslexic child, I recommend that you allow technology to become your new best friend.
The key to my happiness occurred when I stopped trying to change my brain, and started changing the context around me.
One dyslexic friend of mine described his shame as “slow-drip trauma.” He felt unworthy and “not normal” every day. As an adult, he was treated for post-traumatic stress syndrome that was caused by his experiences in school.
Ninety percent of my injuries happened when I was in school and before I was talking about my dyslexia publicly. Hiding who you are can translate into self-harm. When I talk with my peers in the dyslexia movement, a majority of them had a specific plan for suicide when they were teenagers. I regularly meet dyslexic kids who cut themselves or worse when they were young. I am fine today, but the hiding left scars, figurative and literal, for many of us.
My friend Steve Walker, a very successful dyslexic entrepreneur, tells me all the time that you could not pay him enough money to go back to any type of school setting. He even says that he would sooner kill himself than go back to school. Yet in the same breath he will also say that you could not give him enough money to take away his dyslexia, because it is a part of who he is. Many times when I was in school or taking a standardized test, I rejected an accommodation because I was embarrassed and ashamed: I did not want to stand out, or I was frustrated that it would take too much effort to get permission to have my exam read aloud to me.
The majority of teachers and administrators are well-intentioned and look for ways to help your child. However, they often miss the most important point, which is that the goal is not to fix your child— your child is not broken. The goal is, instead, to play to your child’s strengths, support his weaknesses, and give him access to information.
Dyslexia is a genetic, brain-based characteristic that results in difficulty connecting the sounds of spoken language to written words. It can result in errors in reading or spelling as well as in a number of areas not considered major life activities, such as determining right and left. Individuals who are dyslexic can be highly independent and intelligent. Dyslexia is also characterized by a set of strengths that typically come with this profile in one or more of the following areas: verbal, social, narrative, spatial, kinesthetic, visual, mathematical, or musical skills. Overall, it is characterized by an increased ability to perceive broad patterns and a reduced ability to perceive fine detail in systems.
In this definition, dyslexia is characterized as a “disorder,” as opposed to a characteristic. The word disorder suggests that something is “wrong” or that the person is broken. However, disability can be defined only in a particular context, which is to say if there was no such thing as written text, there would be no disability related to reading.
Often people discuss dyslexia in terms of it having been diagnosed, but that word reinforces the notion that dyslexia is a disease, a scourge, an imperfection, and that someday we can find a cure. As I said in the introduction, there will be no cure because there is no disease! Dyslexia is a characteristic, like being male or female, or from a certain state, or a graduate of a certain university. There’s nothing less than perfect inherent in any of those descriptions, is there? You can start changing this practice in your own house today, replacing the phrase “diagnosed with dyslexia” with “identified with dyslexia.”
