Monday, February 16, 2015

What is Neuroqueer? And why should I care? By Corbett Joan OToole


I had no intention of identifying with NeuroQueer. I am a lifelong physically disabled person and I happily identify as “disabled”, a part of the “disability rights movement” and when I am with other disabled people, I call myself a “crip”.

My first introduction to NeuroQueer came through Autistic adults. This new concept of Neurodiversity took me a long time to wrap my head around. The idea that people’s neurologies are different came easily to me. But the idea that baffled me for a long time was that people might speak one thing and what they think can be completely different. Huh? Didn’t everyone have congruence between speaking and thinking?  Well, I knew that for some folks, like people with traumatic brain injuries, that the speaking might not always convey the thoughts – but the idea of this being an organic neurology was new to me.

Even though people patiently explained it to me I remained skeptical until I started reading Emma’s Hope Book blog. Begun by a parent to share their journey with Emma, who is an autistic child, the blog slowly started incorporating Emma more directly. When I first read the blog, the family had no reliable communication. Over the past two years they found a method that works for everyone. With careful documentation the blog posts by both Ariane, the mom, and Emma showed how the new communication method worked and Emma began, for the first time, to write about her experiences. She detailed how her thoughts and her speech often do not match. Her thoughts can now be written down, although the process is slow and requires enormous effort. Until I read her posts I did not understand, nor did I fully believe, that speech and thinking could be so different. Emma showed me that I was wrong.

For me, NeuroQueer is about blowing up my old assumptions. I can let go of them because Autistic and other NeuroQueer people like Emma share their journeys. They write about how their inside worlds often do not match their outside presentations. They write about the horrific abuse they receive for not having typically-acting bodies. They write about theories of cognition and assumptions of in/competence. What surprised me most of all from Emma’s blog is how unfailingly kind she is. Until the past year people routinely treated her as incapable and incompetent. She was neither and, in fact, she is brilliant and insightful.

If Emma was the reason my heart turned around, then the NeuroQueer adults turned my head around. My part of the disability rights movement consistently ignores and demeans people with cognitive disabilities. They are denied leadership training and opportunities. The wisdom gathered in those communities, who often call themselves self-advocates, is ignored.

When I was with NeuroQueer folks in person, sometimes called “In Real Life (IRL)”, I often imposed and expected a neurotypical communication style so I was frequently frustrated and uncomfortable. When I joined online NeuroQueer groups everything changed for me. Communication became easy, people’s intelligence and charm came through to me. I realized that what had changed was the structure of our interactions. In person, I was functioning with the dominant culture’s assumptions and privileges (i.e. people say what they mean, speech fluency equals intelligence, participating in group discussions is easy). Online a different culture reigns that is more inclusive and neurodiversity-friendly. For the first time I could be on equal footing with neurodivergent folks. And that changed everything.

Before meeting NeuroQueer folks, I was locked in binaries – gay/straight; woman/man. For me, NeuroQueer means binaries disappear and the concepts they attempted to define became spheres that can hold endless possibilities.

People ask me what does NeuroQueer mean? I explain it this way. Imagine that someone said, “Hey, let’s have a clubhouse where we can feel safe and welcomed.” And there were a group of people sitting around. And maybe at first, the person starting the clubhouse is Autistic (the Autistic One) and then saw an Autistic person in the group and said “I think you might like this new club. Do you want to come in?” And the Autistic person said, “Sure, I am Autistic and epileptic. Can my friend who is epileptic and queer come in too? Even though he is not Autistic?” And the Autistic One said, “Sure, everyone is welcome who wants to be in the NeuroQueer club.” And so they both came. Then they told other folks and they joined too. And one day someone said, “We need to define NeuroQueer”. And some folks said – “we are a binary – Neurotypical and Neurodivergent”. But other folks said “We are NeuroQueer”. But some folks said “I am not queer, I am straight”. And other folks said, “why are we locked into binaries – can’t it all be true? And maybe “queer” can have a broader meaning of rejecting limiting binaries and embracing all possibilities”.

NeuroQueer is a big clubhouse where you are welcome if you want to be there. And while it’s chaotic, there are definitely some important ground rules. No one neurology is above anyone else. So folks who type for communication hold the same possibilities for leadership as folks who speak. People are the only experts on themselves – outside evaluations might be useful for some folks sometimes – but the only expert is the NeuroQueer person themselves, not any professional.

The group has guidelines too so that people can work together. Kindness is a nonnegotiable principle. We can agree or disagree but we will not be mean to each other. The world already treats many of us badly, we will not bring that in here. We encourage people to not use jargon and to ask for clarifications if they are confused. We want everyone to be able to participate and since we all have different knowledge bases and lived experiences we will always have stuff that we don’t understand. Everyone has something valuable to contribute – but when and how they do that will depend on how much time and energy they have to give. We encourage people to introduce themselves, to bring themselves into the NeuroQueer rooms. There is a lot of support and wisdom in these rooms. People who share their hard times with the group are treated as giving us all a gift of vulnerability. We respect their gift and offer whatever they ask of us – support, advice, resources.

But by far my most favorite part of being in NeuroQueer community is how my vocabulary expanded. I could be polite and tell you about all the new theories I’ve learned. But the part of my vocabulary that’s expanded the most is my swearing. The NeuroQueer folks have the most creative ways of naming oppression and oppressors. To give you a few examples, culled from multiple postings on NeuroQueer: “He is an asshat who deserves to be forced to walk barefoot in a room full of scattered Legos.” Or “The world would be just as interesting without you snotwaffles and nozzleboxes and a lot less annoying.” Or “When life is hard, imagine sitting on a raft with a chicken.”

For most of my life I have been visibly physically disabled and non-visibly mentally disabled. Yet I only disclosed my physical disability. I spent over two years in the NeuroQueer rooms before I felt ready to disclose my mental disability. That disclosing liberated me. Today I read a post by Meriah Nichols, a deaf mom with three kids, one of whom has Down Syndrome. She received a letter from a pregnant woman who’d received a diagnosis of Down Syndrome and because she read Meriah’s blog she decided to not abort. Meriah, like all the other NeuroQueers, just showed us her life as she is living it – with imperfect creativity. For me, that is the single most important part of NeuroQueer – that so many of us find a place where we can be ourselves, where we can contribute and be appreciated.


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