Autism Unexpected: Neurodiversity Right Activist Jonathan Mooney: “You’re Not Broken”


You wouldn’t know to look at him that Jonathan Mooney is a man with a disability. He is young, handsome, and speaks with an easy style and a confidence that doesn’t reflect early, dire warnings of jail or a life flipping burgers that his early teachers predicted for him. To look at him, you wouldn’t know that he is an energetic advocate for what he calls “a defining rights movement for the 21st century,” the neurodiversity rights movement.

Mooney has ADHD and dyslexia and fought his way back from dropping out of school during 6th grade and planning his own suicide to become a published author and travel the country as a dynamic speaker on the subject of disabled children and neurodiversity.

He is the co-founder of Project Eye-to-Eye, a mentoring program that teaches adults and older teenagers with learning disabilities to act as mentors for young children who have similar disabilities.

His most recent book, The Short Bus: A Journey Beyond Normal, chronicles his journeys across the country in a “short bus”—that enduring symbol of special education—to find people like him, those who were once labeled abnormal but who have learned to live in wonderfully original ways.

“You’re not broken”

I had the pleasure of hearing Mooney speak earlier this year and came away changed. There are things I believed about myself and the way I deal with my autistic child that I always felt aligned with the neurodiversity movement, but listening to this energetic man speak solidified my belief that my son can grow up and succeed, “not in spite of his disabilities,” as Mooney believes, “but because of them.”

It is important to tell these vulnerable kids with disabilities that they are not broken, he says. He points out that young people with disabilities are one of the most marginalized minority groups in the country.

“Often their struggles have more to do with how they’ve been treated than anything that is intrinsically wrong with them,” he says. It is important to refute the message they receive over and over that they are “stupid, crazy, and lazy.”

Normal is just a context

Mooney talks a lot about the word “normal.” He says that normality is contextual. He points out that, in schools, normality and intelligence are linked almost solely to curriculum and so-called appropriate behaviors. This doesn’t translate to the world at large. According to Mooney, we need to re-frame intelligence so that these students don’t see difficulty in school as failure in life.

“Difficult children make interesting adults,” he says. “The thing that makes school hard makes life great.” We need to inundate these children with the message that schools don’t necessarily cultivate what makes a life successful.

Speaking of his own dyslexia and ADHD, Mooney says, “I experience learning disability only in certain contexts. I experience a learning disability in the context of school, when reading is what people think makes you smart. I don’t experience a learning disability in the context of public speaking, because the terms of that environment are not one in which my neurodiversity is a deficit—it is actually an advantage.”

The neurodiversity rights movement

Mooney speaks about disability as a civil rights issue. He agrees that disability is a physical issue and that disabilities can be a deficit. He disagrees with those who would say that disability doesn’t really exist. What he does say is that these physical and neurological differences “acquire a negative or positive meaning depending on the context that surrounds them. There is a whole group of folks whose difference is treated as a deficiency.”

“The stigmatization and marginalization of these folks is not different from the marginalization of other people with disabilities, whether it be gender differences, folks who come from a different class background, sexuality, or a different racial background.” Looking at the diminished life outcomes for  students with learning disabilities, only a small number of whom graduate from high school or continue on to higher education is a tragedy. “There’s nothing wrong with the people, it’s what’s wrong with what’s happening to them,” he says.

It is a matter of really believing that these disabilities are neurodiversities and then accepting that neurodiversity is intrinsic and essential to the well-being of human society, according to Mooney. “Human traits only acquire meaning in context,” he says, “Can you find a niche for your child where you can create a different context where what used to be a deficit becomes at best a strength or at least a value-neutral trait? I think that’s really the challenge for parents, to try to create contexts for kids where these neurodiversities are allowed to flourish.”

Answering the critics

When I asked Mooney what he thinks the best message parents can give to their kids, he said, “The message that ‘you’re not broken.’ I think that’s the most nefarious and insidious message of the medical model. You know, ‘Your kid’s sick, your kid should be cured, your kid’s broken.’ That’s a pretty demeaning way to see a young person.”

But no matter how many buy into this, there are always those who want a cure. Critics of the neurodiversity rights movement often claim that activists such as Mooney only speak for part of the population and that there are many disabled people in the world who seek cures.

His response to this is that what people in the neurodiversity rights movement are doing is giving parents and individuals both sides of the story. “I don’t think anyone is advancing a sort of lockstep framework that denies individuals, and subsequently their caregivers or their guardians, to make decisions for them,” he replies. “Right now there’s only been one dominant argument and that is the medical argument.”

The first step for this rights movement and the neurodiverse individuals it serves, before even addressing those critics, he says, is to “hear both sides of the story first and then make a decision about which story they believe—the medical story or the diversity story. We have not had a full fair hearing and both sides of the story have not been heard.”

What can parents do to help their neurodiverse chidren?

Over and over, Mooney tells parents to tell their children, “You’re not broken.” This is crucial information for kids who are told from a young age that they are acting out of line and that the natural needs of their bodies and minds cause them to act in ways that don’t fit in with the dominant school paradigm.

Connect these kids to a group or a place “where they don’t feel abnormal, where they don’t feel freakish,” advises Mooney.

As the parent of a young child himself, Mooney says that the bottom line for him is that what he wants for kids, including his own, is for them to “not be demoralized and humiliated for being whatever they are.”

For children with neurodiversity that is central to their experience, he would like them to see it as neither good nor bad. “I would see it, as like any other human trait, as just a fact. The challenge for us is that we have to make that fact good in their lives and that means we have to work with the schools and the different systems that surround them to make sure they are celebrated for who they are and not made to feel ashamed of it.”

Orchid kids

Mooney has said that if he were handed a pill that would cure his disability today, he wouldn’t take it. He cites genetic research that shows that genes that lead to successful life outcomes are those that are susceptible to bad environments.

For instance, dandelions can survive anywhere, but they are not special. The orchid cannot grow just anywhere, but when it does, it’s extraordinary. “Different is not deficient,” Mooney says. “We’ve got orchid kids here.”

Left in happy tears after hearing him speak earlier this year, it felt to me that Jonathan Mooney gave me permission to feel and vocalize something vitally important about my disabled son. I leaned over and explained through sobs to the woman sitting next to me, “I have a six-year-old with autism. And he’s perfect.”

He is.

Originally published at Autism Unexpected on June 9, 2010.

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