Dancing with neurodiversity

I game the space the way I open with the body and the way I think which is the way of water

I want to say that I want
to amazing space think
about the way I move
to think

I game the space the way
I open with the body and the way
I think which is the way
of water

It touches me open and I am
away with really easy feelings
of dancing for the answering
really rare always rallying
thinking and it is rare with the way
people think

Really way of touching the world is
the way I am wanting with
my tics

I think that I want the way inside
questions opening the want to
the wanting way which thinks openly
toward the water and I am
thinking about it all
the time

I think that I want the way inside
questions opening the want to
the wanting way which thinks openly
toward the water and I am
thinking about it all the time like
eating words

-Adam Wolfond (non-speaking poet)

Eryn Dance Trudell and young dancer. Photo by Kinga Michalska

When I think about it, most of my closest friends are neurodivergent in one form or another. I resonate with neurodivergence.  Probably for a reason.

My sister describes herself as “neurowhimsical,” and I think that description fits well with the forms of ADHD-flavoured neurodivergence that run through my family, and underlie our difficulty navigating the world, problems with addiction, but also great creativity as well.

I like the term “neurowhimsical” because with lifetimes of coping strategies in our family we mostly manage, and we mostly pass.  The difficulties are reflected in the fact that we have chronically dropped out of school – school just doesn’t work for many of us, though my dad and I bucked the trend by dropping back in and getting PhDs. 

It has been often pointed out that, for those who are neurodivergent or disabled, challenges arise from a misfit between one’s own body (including one’s brain) and an environment built for neurotypical, non-disabled bodies/brains. In a classic example, if you have ADHD, classrooms that require you to sit quietly and focus on a single lecture, text, or activity are a bad fit.  A lot of the difficulty comes from navigating the affordances of an environment or niche we don’t quite fit. 

What’s an affordance?  It’s a term that is currently ubiquitous in the Human Computer Interface(HCI)/Design worlds, but the term was coined in the mid twentieth century by the late psychologist James J. Gibson, a founder of a school of psychology known as Ecopsychology.  An affordance is neither a property of a body nor a property of an object– it’s created by the meeting of a particular type of animal, with a certain body arrangement and configuration of sensory systems, with the environment in which it finds itself. Affordances involve what can be done by that body with the things in the environment – the actions the environment affords.  The standard examples are that, for the able-bodied human, a cup handle or a pen is graspable, a flat chair surface is sittable, and over development  we become skilled as we learn what actions our environments afford.  Others have built on the notion of affordances to talk about social  affordances. Even if we can physically do things in a given space, the social rules often limit or prohibit them.  Social affordances are interactions with the environment we have learned are socially desirable or acceptable. At the diner, I can grasp and eat the smashburger that I’ve bought and is on the plate in front of me, but I can’t walk over to a stranger at another table and grab and eat their smashburger. Their smashburger is not graspable and eatable for me. Or if I have ADHD, the lecture hall doesn’t offer the social affordances that would allow me squirm or to get up and walk around during a lecture, even if it’s physically possible.

In her book Activist Affordances, interdisciplinary scholar Arseli Dokumaci describes the experience of disability precisely as a constriction in the affordances presented by environments built for able and neurotypical bodies. She describes how activist affordances involve the heroic and often unseen acts of improvisation, which can take huge amounts of the improviser’s time and resources, that are required to navigate these environments. 

Along a similar vein, UK-based philosopher Joel Krueger writes about the  “lived space” in between people – an intersubjective space of shared attention and meaning. According to  Krueger, we lose agency when our words or actions are not acknowledged by others as meaningful contributions to an interaction.

Really way of touching the world is
the way I am wanting with
my tics

For Krueger, physical spaces —built environments —  are intersubjective spaces into which we physically extend ourselves in interaction with others. And as such, they’re created for some people more than others. For example, autistic movement patterns, which can include rocking, hand flapping, or different gaits or postures, seem strange or inappropriate to neurotypicals and so don’t sync with social affordances of shared spaces. But these express distinct subjective experiences of being embodied, including sensory overload and challenges with forms of fine motor coordination. That is to say, they often arise from a misfit between autistic bodies and spaces created for neurotypical bodies, as well as the with the rules about how to act in them. Autistic bodies are misattuned to the rhythms of neurotypical spaces and interactions. And this, for Krueger, results in loss of agency that is soul-killing (my words).

British sociologist and autistic rights advocate Damian Milton points out that misattunement goes both ways. He coined the term the “double empathy problem” to describe the fact that empathy is a two-way street, and that neurotypicals fail to get autistic people just as autistic people fail to get neurotypicals. Consistent with this, a recently published study from the lab of neuroscientist Guillaume Dumas, a researcher at Université de Montréal, compared EEG synchrony (how much the rhythms of the brains were dancing in step) between neurotypical/neurotypical vs. mixed neurotypical/autistic pairs of adults while they were imitating hand gestures. The researchers found that overall the neurotypical pairs showed more synchrony with each other than the mixed pairs did, as you’d expect in the case of the double empathy problem. But when they broke their findings down a little bit differently, analyzing their data according to leading/following roles, they observed synchrony between the brains in the mixed pairs at a different brain rhythm (EEG frequency band) from the one observed for the neurotypical pairs. The authors interpreted this as reflecting the need to find new strategies to coordinated across neurodiversity.

Eryn teaching at Leviathan Dance Studio in British Columbia. Photo by Christiane Bourget

But you don’t often see that mutual struggle to fit each other’s rhythms across neurodiversity because the power, of course, is imbalanced. Neurotypicals usually don’t have to try. As a result, as Milton attests, the imposition of neurotypical norms and attempts to normalize are experienced as ‘an invasion of the autistic lifeworld’

May today be awake with scent
May today be awake with the scent of flowers
May today be awake with quality
May today be awake with the quality of motion
May tomorrow be awake with time
May tomorrow be awake with the reality of time
May tomorrow be awake with touch
May tomorrow be awake with the touch of zero

-Meghana & Chetan Junnuro (non-speaking poets)

Now I want to introduce my friend and longtime collaborator, in dance and research, Eryn Dace Trudell. Lately, Eryn has been devoting herself to dancing across the neurodivergence divide. 

First some backstory: I met Eryn back in the 1990s. I had booked some studio time in the dance studio, Damn Straight, she had recently opened with her partner, Sharon DiGenova. At the time I was a young mother, a stranger to the Toronto dance community, and feeling tentative and out of place. I’d heard about Damn Straight listening to a radio show one day while I was cleaning my apartment in Montreal, as my babies rampaged. When I met her, Eryn was in  her mid-twenties, a bit younger than I was, and had started the studio fresh out of Juilliard. What I remember of her from our first meeting, when she showed me the studio and gave me the key, was swirling hair and skirts and a serious facial expression.  She said she had come straight from a flamenco class — hence the swirling skirts. She was friendly, and direct, but she didn’t do the social smile thing to ease the awkwardness of first meeting.  I felt a bit intimidated.  As I would learn, she was and is a glorious dancer.  When she dances, air moves between every vertebra of her spine, and through every cell of her body. I don’t remember exactly how our friendship first developed, but I do remember when we started working together in the studio. I had received my first grant ever for a choreographic project, and my main dance collaborator dropped out to go on tour. I asked Eryn to replace her. And the rest was history.  We were very complementary collaborators – I was cerebral, working from conceptual ideas, and Eryn had an amazing capacity to instantly grasp and translate any concept I could bring into the studio into tangible, moving, embodied life. We created several dance pieces together, and that collaboration continued until she moved to Montreal, and I went back to school to ultimately get a PhD in Psychology and Neuroscience. 

After she moved to Montreal, Eryn had two kids of her own. After her first daughter was born she started teaching dance classes for mothers and babies she called Mama Dances, which turned into a business with a teacher training program that’s still going to this day. She then went on to get her Master’s degree at University of Quebec in Montreal. Her thesis investigated mothers’ experiences dancing with their babies, with a focus on participatory sensemaking processes between the mothers and their infants.  Here is a video of Eryn dancing with her daughter Yoko in a dance called Bear Hunt, choreographed by Suzanne Miller to music composed by Alan Paivio.

Mama Dances class with Eryn. Photo by Kinga Michalska

More recently, Eryn has started working in local schools, conducting dance improvisation sessions with autistic children, some of whom are non-speaking. She excels in this role, and she credits her successes to her decades of experience in contemporary dance improvisation, which she feels gave her the skills  required  for sensemaking with the children. But also —  I don’t know if Eryn identifies herself as neurodivergent, but she has always navigated the world according to her own values and perceptions, without feeling she has to compromise or accommodate herself to social mores. She doesn’t always see or observe the limitations created by social affordances. And this, alongside her many years as a dance improviser, may help her align with the autistic kids she’s dancing with.  

Eryn describes a heartbreaking number instances of ‘invasions of the autistic life world’ that she observes within the school environment. She says, “There's one child that often beats the back of his shirt. Something in his upper body is bothering him. He screams and knocks his back. But I figured out — partly because of my own daughter, who's wearing a school uniform also —that they're scratchy. The texture of the fabric of the school uniforms are uncomfortable. So I suggested to have the child take off his shirt. He's got an undershirt on too. And that's another thing - the shirt is too tight. So he's wearing an undershirt and then he's wearing a shirt that's too tight and it's also a fabric that's uncomfortable, probably of some synthetic material.  And why do they have to wear the uniform? If it's too tight and it's bothering them, get rid of it – it doesn't matter.”

Eryn uses her dance sessions as a means of observing and then trying to enter the childrens’ lifeworlds.  She describes her experience with one child who was new to the school and was very challenging to the staff, who couldn’t find a way to break through and communicate with him. Nobody seemed to know what language his family spoke at home, Eryn tells me, but they inferred it was not French or English. She says, “He doesn't speak at all. He really doesn't make any eye contact. Will not participate in anything. If he's doing something and then you go to do that thing with him, he'll walk away. He really does refuse connection. And language is not an option at all. But - his actions... He has this obsession with picking little balls off his shirt. And sometimes he picks a ball up and he puts it in his mouth and then he takes it out of his mouth and then spits it out. So at one point, I started picking up these little balls and putting them in my hands and collecting them. And then he noticed. And then he started picking them out of my hands. So all of a sudden I was present to him. I became something that he acknowledged as being present.”

“The thing is, nothing is taboo in my world because I grew up in contemporary dance. Anything can be on the stage and anything is considered. Most people would think picking up the balls was gross, right? A ball that has been in  somebody's mouth and I'm picking it off the floor and I'm putting it in my hands. But this is the movement that he's engaged in. And so I then begin to be engaged in that as well.”

As another example of entering her students’ lifeworlds, Eryn continues:

“I finally learned from a skilled special needs educator, that this same student loves darkness. What I do now is draw the blinds. So I create an environment in the space that I believe feels more safe for him. This particular child likes to collect objects, and he really likes sound. So I noticed the way he's walking - with what kind of weight and what kind of sound the walking makes. And then I start just repeating it, and that becomes our vocabulary. When I started reproducing the sounds  he made, he clearly connected.

”Changing the lighting and maybe pulling the curtains and maybe just shifting things around a little bit was a key to my work with another student that I'm kind of excited about. He's so difficult, and it's hard to explain how. He can frustrate you to the point where you just feel like you're losing your mind. He just will not take no for an answer. He will insist and insist and negotiate and not let up and he will not do anything that you want him to do. He always wants you to do what he wants you to do. He's a real leader. If you just say, ‘Okay, tell me what to do,’ then he's in his element and then he gets very, very creative: ‘Okay, do this and hold your hands like this. And when I push you here, you say beep.’ Things like that.  He'll set the whole thing up, he’s got a future as an artistic director. And so when he comes into the room, I basically say, ‘Ok, so what do you want to do?’ And he'll sit down at the piano. He always wants to play the piano. So of course if the teacher is there they say, ‘No, it's not piano class, it's dance class.’ I’ve noticed that the presence of others makes him reactive. And also some of the comments that I hear are just so inappropriate. Like, ‘dance for me.’ Like this is supposed to be funny. I don't need that kind of comment when I'm trying to get this child to reveal to me what their talents are. What they're capable of.

“This guy when he's feeling secure and listened to and respected, he will sit down at the piano and he will play the most extraordinary improvisational piano pieces. It's beautiful. And all he wants me to do is listen. Sometimes I'll get up and I'll dance, and then he'll say, ‘No. You have to sit down. You have to sit down right there and watch and listen.’

“And he was obsessed with the fact that the curtain, the backdrop in the room, is strung up and tied up in the rafters where you can't touch it and you can't get it down. He wants it down. I said ‘Okay, let's talk to Mr. David.’ So I ask Mr. David and he says, ‘Okay, yeah, I'll try to do it.’ And then of course it doesn't get done. Every day the child comes in and says, ‘Can we have the curtain?’ And I say, ‘Let's go ask Mr. David again if he can put the curtain down.’ So we go and ask Mr David. ‘Oh, I forgot, I'll do it tomorrow.’ Every day. Finally, we came in one day and the curtain had been taken down. So now he can play with the curtains. Now it's all about creating his performance environment. And he's working with moving the curtains and placing them just right. Placing everything just right. The result of all this negotiation was a brilliant reveal of hidden talents performed live before the school assembly.”

How do we teach ourselves to dance across the divides? I’ll give Eryn the last word: “I do catch myself in these moments where I'm feeling somewhat anxious because I should be doing something. But actually, nothing needs to be done. Just sitting and being is enough. Sometimes. But most of us, we're so bad at that. If we can do it at all, ever.”

Awe arrives as the sound of string instruments
Awe arrives as the feel of a silky shirt
Awe arrives as the taste of coriander spice
Awe arrives as the sight of a seal
Awe arrives as the smell of water

- Meghana & Chetan Junnuro (non-speaking poets)
For more from neurodivergent poets see this website