A few months ago I had a jarring exchange with someone I am mentoring in a change organization. I suggested that preparation for our meetings was essential and asked if we could brainstorm ways they could approach the work so that it felt possible to get it done. They said back to me, “You wouldn’t understand and I hate being told what to do by neurotypical folks.” As someone who is not in any way neurotypical, I was surprised by their reply and sat there in silence for a minute. “But I’m not neurotypical,” I said quietly. They came back at me with: “Well, then I don’t understand your generation’s need to achieve academically and hide yourself.”
As a neurodivergent adult with three graduate degrees and a sometimes academic job, I am in the strange position of both having learned how to work with my brain and body in order to fit into a culture that simply was not interested in my experience of difference and having succeeded at it, perhaps at my own expense. My sense of self was forged in a tradition that not only was not interested in, but also pathologized my way of being in the world. That tradition turned what, now I see as the very reason I succeeded, into a deficit, a less than, a flawed orientation, a shameful trait better hidden.
However, I am also wired internally in ways that make it impossible for me to accept conventional wisdom that clashes with my experience. I seem to not be able to keep my mouth shut. (When you study storytelling and doing change shaping work in the world, that’s probably a good thing.)
In the fat activist movement, I first heard the phrase “nothing about us without us.” It felt right. And yet, until I read the book Neuroqueer Heresies by Nick Walker, I had not found the voice of my folks speaking into the void. In that book, I discovered the possibility of a “neuromixed” world in which pathology was tossed out the window in favor of a view of diversity that included different minds and bodies alike. To me that meant, and means, more creativity, more passion, more ways of thinking and doing, and more chances to get change right.
One of the questions I remember asking a therapist in my 30’s was “How can I tell what is personality and what is a “disorder” when it all feels the same to me?” Today, I would phrase the same question differently: How do I build a self that includes my experience as neurodivergent / neuroqueer so that I can flourish in a world that was not made for me? And how do I translate what I know from “not fitting in” into the world of justice, activism, and change?
While there is no good way to stereotype folks who are neuroqueer, I would agree that these qualities are brought out in folks who are stigmatized based on how our brains and bodies work. So, my experience with change shaping organizations is that there are more of us here, more of us taking action, and more of us flying our flags as ourselves.
What I have discovered in 35 years in change shaping organizations is this: there are more neuroqueer folks here than the statistics say there should be. Perhaps because we are more passionate about a better world, perhaps because we are more sensitive to injustice, perhaps because we want to know a lot of things about a lot of things. This article on neurodivergent activists says it this way: “Many neuroqueer people have a thirst for knowledge and desire to learn everything on a subject. When this is applied to science and climate, it can drive a passion for activism.” Later on the same article lists these qualities:
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We struggle to adhere to social and cultural norms.
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We don’t respect hierarchy.
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We believe strongly in fairness and equality and reject systems where we feel injustice is the code.
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We have heightened levels of compassion for suffering.
For me, and for some researchers I respect, the answer to how we make change, as neuroqueer folks or anyone else, is storytelling. I am formulating the ideas for a book about a neuromixed world in which I can tell myself, and the mentee with whom I was talking at the beginning, that there is actually not a single thing wrong with us. The overlapping systems in which we live are just deeply flawed. The stories we tell connect us to each other, build new worlds, and create better futures and better histories.
So I am choosing to address the world’s deficit through stories. In many ways what I learned in my academic career is that most of our problems are story problems set in story systems that create story deficits and truth deficits – both of which end us up in what Hannah Arendt called “the dark background of difference” where we are supposed to sit down, shut up, and go along to get along.
Luckily, and probably because of being neuroqueer, that is simply not an option for me.
Communication and the agency it brings is not a one person experience. Communication necessitates connections between people, communities, ideas, and experiences. And that kind of change is a structural and systemic one. Story is also the best container and practice for making cultural, structural, systemic change because it creates interconnectedness – and that is the catalyst for growing a new world. There is a pattern to successful storytelling-based change that I have written about elsewhere. It goes like this:
Be in the trouble,
Stay rooted in place,
Share our stories.
What does that mean in terms of breaking down the systems that keep us sorted by whether or not our brains function the way theories say they should? For me that means showing up more as someone who knows that her experience of the world and ways of using her mind and body are different. I need to stay “with the trouble” as Donna Harraway says it. Be honest with myself about my life. Make friends with my grief that I did not get the support, the education, the respect, or the curiosity I needed to thrive. We can change the past once we have felt it. I know these words to be true, so they have become one of my anthems.
Stay rooted in place. This is the space I occupy in a neuromixed world. Let me describe it to you and then listen to you tell me about yours. I don’t skitter away from my own reality nor do I pull away from yours. One of my beloved professors in graduate school said: “Pay attention, stop complaining.” That, too, is one of my anthems.
Share our stories. First with the curious and the loving, and then with the folks who need to know, perhaps to the powers that be. But I don’t waste stories, breath, life force, or words on the folks I am never going to appeal to anyhow. A friend of mine says, “I am a spicy salty snack, I am not for everyone.” And that is another one of my anthems.
The way we create a neuroimixed society is the same way we create change in any system – and that is through reclaiming our narrative agency. In other words, what I call Story Justice. To create a world in which we own our own stories, we build, hack, morph, and create both the language and the world in which they can thrive. That agency is the kind of worldbuilding that makes up any kind of activism around neurodiversity or anything else.
Our stories allow us to connect with folks – be it around food systems, the environment, or creating a brilliantly neuromixed world. They make it possible to feel each other’s experience. Stories usually solve more than one problem at a time – and in this case that means they can connect people with different experiences at the same time as they create a world we want to live in or even can live in for longer. They help us look in two directions at once. We are looking backwards to gather the seeds we will plant that will grow to be a world we want to inhabit in the future. This is a different kind of activism that I feel could both grow out of a neuromixed world and grow into one. Worldbuilding is not agitating for or against anything – it is the creative endeavor of moving together into the future. Something that neuroqueer folks have always had to do. So while there are a lot of us in this world of change shaping, and always have been, clearly my encounter with that person at the beginning of this piece tells me we are – and by that I mean I am, not telling our stories, making the connections we need, and growing a different world for each other from the seeds of our pasts. So for them and for me and for anyone who yearns for change, I commit to telling more of my experience to create strength among us and hope for what could be.