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
Autism Acceptance/Awareness Month is a hard time for autistic people. Myths and misinformation are amplified over our voices. We are drowned out and harassed.
How can you help? Here are some ways.
- Avoid amplifying these myths.
- Learn about us from us.
- Learn about autistic burnout.
- Don’t amplify inspiration porn.
- Don’t support behaviorism.
- Use and promote identify-first language.
- Connect autistic kids with autistic adults.
- Change your framing.
- Know that we are dying young.
Avoid amplifying these myths.
“Navigating Autism Acceptance Month and Autism Myths” covers the common myths and misconceptions. Please don’t amplify these. Seeing them dominate and drown us out on social media makes for a depressing month.
Learn about us from us.
Nothing about us, without us. That’s a golden rule for inclusion and pluralism. Learn about us directly from us, not just from parents, educators, and healthcare workers, many of who have a 1940s era conception of autism.
Here’s what our autistic, ADHD, dyslexic, dyspraxic family wants you to know about us. This collects the voices and thinking of the #ActuallyAutistic self-advocacy movement:
Here are some hashtags where autistic people will be sharing and educating during Acceptance Month. Learn and amplify.
Learn about autistic burnout.
If you saw someone going through Autistic Burnout would you be able to recognise it? Would you even know what it means? Would you know what it meant for yourself if you are an Autistic person? The sad truth is that so many Autistic people, children and adults, go through this with zero comprehension of what is happening to them and with zero support from their friends and families.
If you’re a parent reading this, I can confidently say that I bet that no Professional, from diagnosis, through any support services you’re lucky enough to have been given, will have mentioned Autistic Burnout or explained what it is. If you’re an Autistic person, nobody will have told you about it either, unless you’ve engaged with the Autistic community.
Autistic Burnout is an integral part of the life of an Autistic person that affects us pretty much from the moment we’re born to the day we die, yet nobody, apart from Autistic people really seem to know about it…
My piece on autistic burnout is the one I get the most feedback on from other autistic people, including autistic students and teachers. If you learn one thing about autism for your autistic family member, student, patient, or co-worker, let it be burnout.
Don’t amplify inspiration porn.
Inspiration porn is called porn because it objectifies disabled and neurodivergent people. Our family has had to navigate well-intended inspiration porn. Here’s what it is and how to avoid it:
We are all too aware of the risk of being filmed for someone’s feel-good story (or for someone to mock, but that could be another post). We already face enormous pressure to not ask for help – to be the “supercrip” and “overcome” our disabilities – and the risk of being a viral story is yet another reason we might avoid asking for help when we need it.
Don’t support behaviorism.
Autistic people don’t support Autism Speaks for many reasons, but one of the foremost is their support for Applied Behavior Analysis. The #ActuallyAutistic community is very much against ABA, PBS, and behaviorism is general. ABA is autistic conversion therapy. It shares history and bad actors with gay conversion therapy, a widely and rightfully condemned practice.
“We KNOW conversion therapy has seriously dangerous mental health implications for those that have had to experience it. Experts caution those who attempt to change someone’s sexual orientation. So WHY are we allowing people to attempt to change someone’s orientated thinking?”
The spread of ABA, PBS, and behaviorist ed-tech into education is of great concern. We watch the autism industry expand through public education with alarm and despair. Drop the B from PBS. Many autistic self-advocates consider such behaviorism an existential threat, myself included. Help us push back against behaviorist ed-tech at your school.
Asperger even anticipated in the 1970s that autistic adults who “valued their freedom” would object to behaviorist training, and that has turned out to be true.
Use and promote identify-first language.
Disabled, Deaf, Blind, autistic. Just say the word. The majority of those in these communities prefer identity-first language, not person-first language. Promote identity-first language, and respect language choice, be it PFL, IFL, or otherwise.
When you excise a core defining feature of a person’s identity from their living, breathing self, you sort of objectify them a bit. And you make that core defining feature optional. Because it can be safely removed, and they’re still a person. Right? Well, a person, yes – but not the sort of person they know themselves to be. And not the sort of person you can truly get to know. Because you’ve denied one of the main characteristics of their nature, out of an intention to be … compassionate? Dunno. Or maybe sensitive?
Whatever the original intention, the effect is just a bit dehumanizing. And a lot of us don’t like it.
So, if you’re into PFL – person-first language – please reconsider before you use it regarding autism. Cancer is one thing. Plaque psoriasis is another. Autism… well, that’s in a league all its own. And I wouldn’t leave that domain for all the money (or well-intended compassion) in the world.
Connect autistic kids with autistic adults.
Autistic is a community, a culture, and an identity. Connect autistic kids with autistic adults. We can help them. We know what it’s like.
“Autistic kids need access to autistic communities. They need access to autistic mentors. They need to know that the problems they go through are actually common for many of us! They need to know they are not alone. They need to know that they matter and people care about them. They need to see autistic adults out in the world being accommodated and understood and respected. They need to learn how to understand their own alexithymia and their own emotions. They need to be able to recognize themselves in others. They need to be able to breathe.”
“That study identified, unsurprisingly, that it’s parents & professionals are ones fighting to hang onto ‘special’ but here’s the thing I honestly don’t get – you are depriving the kid of their membership in a big, welcoming, fantastic, supportive community by doing so. Why?”
Change your framing.
Know that we are dying young.
CW: mentions of abuse, PTSD, therapy, behaviorism, suicide
Feel our urgency. We are dying young. We’re dying of PTSD induced by forced neurotypicalization. Behaviorism contributes to burnout, high suicide rates, and short lifespans for autistic people. We need allies and amplification, not more behaviorism and inspiration porn.
“#ActuallyAutistic people would do ANYTHING to stop young children going through some of the things they have. The pain. The trauma. The distress. The lack of compassion. The lack of understanding. Listen to us when we tell you the pain ABA therapy causes.”
“Pretty much everything an autistic child does, says, doesn’t do or doesn’t say is pathologised and made into a way to invent a ‘therapy’ for it. It’s actually hell to experience. We should stop doing this and start learning about autism. Thank you for listening.”