Am I subversive? An autistic person navigates the Open Floor and wonders how inclusive we really are

I was described as ‘subversive’ in the Open Floor mentor group the other day. It set me thinking about all the ways in which autistic modes of being are constantly interpreted / misinterpreted in allistic1 culture – often so thoroughly and insistently that eventually we as autistic people incorporate the interpretation as reality. Throughout my life I’ve repeatedly been referred to ‘subversive’, ‘anarchic’, ‘rebellious’ and other variations on that theme. Sometimes it has been with affection; other times it has come with a backwash of judgement and disapproval. Up to now, I’ve pretty much taken it on and defended it, as if it belonged to me, but there comes a moment when a tipping point is reached. Something’s got to fall off the top of the heap.

To me, subversive suggests an intention to subvert. But I’m actually not interested in disruption for its own sake. What you’re witnessing if you see me engage with Open Floor is just an autistic person engaging with Open Floor. I am really searching out ways of understanding and offering this work that feel authentic and meaningful for me, ways of being in it, both as a praxis and as a community of practitioners, that feel nourishing and supportive rather than dysregulating and overwhelming. As someone autistic, I often know only vaguely and two beats behind everyone else what is the ‘normal’ (read ‘allistic’) and expected response; and even then it’s a kind of intellectual apprehension; it doesn’t register on my internal compass. I seldom have an intrinsic sense of the ‘rightness’ of it being the way allistic people presume it’s going to be. So I am always wobbling on the pointy edge of producing what you expect me to produce or allowing the expression of what naturally wants to push through to the surface.

It’s challenging to be in a curriculum which is so fond of referring to itself as that, and in which the language of ‘teaching’ and ‘student’ is so valorised. Autistic people are most often our own teachers. We will research every angle, but in order truly to know, we have to take the whole thing apart and reinvent it, generally in wild, strange and unanticipated ways. We take nothing as given. As one of my autistic clients says, ‘It’s never enough to be told; I have to go through it myself to know for certain.’ This is why innovators and ground-breakers – those people who revise cultural, scientific and artistic understandings – are often autistic. Yet while the results may be revolutionary, the autistic person is usually far more absorbed in the stuff of their specialism than they are interested in what society makes of their break-through productions.2

It felt really, really good to shuck off ‘subversive’ ­and reframe it as what it actually is. And I’m grateful that the mentor group is the kind of receptive space where it feels possible to up-end perceptions in this way, knowing that different realities can be received and held. Not all spaces are like this.

I’d love for there to be more genuine inclusion on the Open Floor. My experience is that while there’s a wish and a willingness to include up to a point, it doesn’t extend far enough to motivate most of those who organise and facilitate actually to do things differently where this entails some disruption to their own habits and preferences. You can be included if you’re willing to make all the accommodations yourself. If you’re unable to stand, for instance, (I can’t for long), you can sit down during the standing circle, but – as if you don’t actually exist in the group – there will still be a standing circle.

It has been an enormous struggle – over many years of remaining upright through pain, fatigue and dizzy-faintness – for me to be able to stand up (sit down) for myself in this simple way on the dance floor. It takes A LOT of self-confidence to offer yourself as the big sore thumb in a large international workshop with a high-profile teacher who has not made any enquiry into the special needs of individual dancers on the floor. Make no mistake about it, this is a powerful statement. A teacher who is more involved in control than in listening and receiving may judge you as lazy, uncooperative, challenging, or, oh yes, subversive. Even in a small workshop with a relatively unknown facilitator, power dynamics are surely in play. Many of the people we as facilitators hold in our dance spaces are drawn to movement practice for reasons that make them vulnerable in multiple ways. They need our help in listening to their authentic needs and in holding their genuine boundaries. We have to take care that we are not only talking the good talk but are really engaged in helping them to do this work. For all of us, the extent to which we are managing to offer this kind of supportive inclusivity must be an ongoing open question.

It’s not that I haven’t received help like this – I have, and I’m super-, heart expandingly-grateful – but it was over a decade before I was able to make known that I needed it. It was like the crackling of glacial surfaces and an ice age coming to an end. We are all growing older, wiser and more decrepid, and as a result some of our spaces (I’m speaking here of the Five Rhythms and all of its children, of which Open Floor is the youngest) are becoming kinder, more open-minded, less attached to the delivery of cherished teachings and more responsive to the needs of the dancers in the room. I feel so anyway. I hope so.

I’m in another mentor group. We are seven autistic women. I told the group my ‘subversive’ story. These were a couple of the responses:

I totally recognise that. I’m often described as awkward, contrary, rebellious, perverse or non-conformist. Some are disapproving and others admiring, even envious. I’ve kind of taken on that identity with pride, but reframing it now, it’s all about our intention being misconstrued. I never set out to be rebellious, but I guess I’ve taken it on because I was being seen that way. There have been more than a few times when I wanted to say (and sometimes have said), ‘Actually that’s not my intention at all.’

I recognise this only too well. I get misinterpreted by a certain kind of person who thinks that my desire to play with concepts and excitedly share information is trying to prove I’m cleverer than them and that my willingness to do things that frighten other people is me being ambitious and having ideas ‘above my station’. I had a supervisor who was a classic example of this. I’m not ambitious in the way he believed. My motivation is around services for clients, or my desire to learn new things, or be creative, not to empire-build or grab opportunities for personal promotion.

It seems that it’s difficult for the neuro-majority to really ‘get’ that the way they process and perceive things is only one possible way of processing and perceiving. If you want to make an autistic person incandescent with rage, try telling them, ‘We’re all on the spectrum.’ We are not. People who are autistic – and only people who are autistic ­– are on the autism spectrum.3 Maybe the recital of the dread sentence is well intended; presumably it’s a misguided attempt at empathy; the problem is that it whitewashes and belittles the very real and unique difficulties that autistic people routinely face in allistic society. As one autistic woman commented, ‘You wouldn’t go up to someone in a wheelchair and tell them how you sprained your ankle once so you know how they feel, or say to someone with Alzheimer’s that you are really forgetful too.’

As I feel for an end point to this writing, it strikes me that ‘subversive’ as a descriptor is really a way of excluding. What ‘subverts’ is the thing that the school or the teacher or the teachings or the practice container is not yet elastic or expansive enough to encompass. By bringing our difference, our unexpectedness, the uniqueness of our perceptions, our left-field, autistic, one-directional determination and ‘cussedness’, together with our absolute commitment to honesty and authenticity, we can challenge the container to grow. And if it’s a good container – a vital, generative, evolving one – it will respond.

DSCN0036

1. Allistic: ‘non-autistic’. This is a good article about the language of autistic and other neurologies.

2. Steve Silberman’s acclaimed book Neurotribes is a a brilliant discussion of this.

3. I like this – very autistic – explanation of the autism spectrum.

Look into my eyes: autism on the dancefloor

A 2011 fMRI study … found that the brains in a sample of high-functioning autistics and typically developing individuals seemed to respond to eye contact in opposite fashions. In the neurotypical brian, the right temporoparietal junction (TPJ) was active to direct gaze, while in the autistic subject, the TPJ was active to averted gaze … The study found the opposite pattern in the left dorsolateral prefrontal cortex: in neurotypicals, activation to averted gaze; in autistics, activation to direct gaze. So it’s not that autistics don’t respond to eye contact, it’s that their response is the opposite of neurotypicals’. The Autistic Brain, Temple Grandin (Harcourt Miffflin Harcourt Publishing Company, 2013).

A few weeks ago. I am on a 5Rhythms dancefloor. It’s near the end of the dance, and here it comes again that instruction: look into your partner’s eyes. But a couple of things have happened since the last time I was asked to do this. One: I have a diagnosis of Autism Spectrum Disorder (ASD), aka Asperger’s Syndrome, aka autism. (I prefer ‘autism’, because whereas ‘ASD’ and ‘Asperger’s’ are a having, ‘autism’ is a being, and I am autistic.) Two: I have recently got to this passage in Temple Grandin’s book.

While it isn’t natural for me to look into another person’s eyes, like most older women with autism, over the years I have trained myself to hold all sorts of gaze, in all sorts of different situations, in neurotypical-mimicking ways, so on a purely technical level, I can do this exercise really well – better than many neurotypical people. But the thing is, my gaze is a very skillful forgery – so skillful that unless you know what you’re looking for, you’ll never spot it.

After a minute or so of eye-gazing, I see that my partner’s eyes are beginning to tear up. And I am feeling …  at first it seems nothing … but if I stay with myself and keep watching … there it is: I feel pinned, like one of those asphyxiated butterflies impaled on a tiny cushion. I feel incandescent with fury, hot little flames licking up my belly, because once again I have been compromised, manoeuvred, forced, and the only way I know to break through this fakery and blast my way into truth is to get up and walk away … but this is such a fundamental transgression of a human – neurotypical human – rule of intimate engagement that I do not dare. And, yes, it would be one hell of a dance, but if you have ever been in a minority, if you have ever felt the weight and surprising omnipresence – look, it’s even here inside me! – of the arm that polices, you may understand why in this moment a few weeks ago, I cannot stand up and do that dance. So I am left with this nasty-tasting insinuation, this snaky voice in my head, whispering that I am all wrong and that you, neurotypical person, are all right, because you have the tear of the majority in your eye, and the way my brain is wired, this isn’t intimate.

My capacity for social interaction is limited. It’s an effort for me, even now, after decades of practice, to read the signals, and I quickly become exhausted and overloaded. One of the reasons I gravitate to the dancefloor is that, by and large, it offers me an opportunity for engaging with others that bypasses the social and moves directly into a space that I can read and negotiate with fluency. This is a place beyond what can be spoken, beyond the mask of social expression, a space that drops suddenly and sheerly, deep into the hinterland, the silent wilderness of emotion, of a wordless bodily knowing of which thinking mind is mostly unconscious. This is my natural habitat. It’s the place where the real me lurks, half-concealed in shadow behind the social forms. It isn’t a place I choose to live – though I wouldn’t choose to live anywhere else – does a lion choose to live in the jungle or a fish in the sea? It’s a habitat written into my genetic code.

My capacity for intimacy is profound. I have no doubt about that. I have had two relationships with people who, in hindsight, I recognise to be autistic. We never looked into each other’s eyes. It wouldn’t have occurred to us. But I experienced a depth and detail of intimacy in those relationships that none with a neurotypical person has ever come close to. I’m not saying that neurotypical people are less capable of intimacy than autistic people, though I do feel that in some ways neurotypical people experience and express intimacy differently. But I know that there are autistic people who are primed for an intense, surpassing intimacy that feels oceanic in it’s bigness and wideness and the fierceness of its tides.

In any form of moving meditation practice, we hold the intention of staying with our experience, of continuing to move with and into it, of continuing to witness it, so that gradually, moment by moment, day by day, year by year, we expand our capacity to include. Our bowl becomes ever more capacious. At the same time, balancing this willingness to be present to whatever arises, is a discriminating awareness that holds the potential to move us away from situations of harm and towards places, people and practices that hold out the possibility of knitting us into wholeness. Where this discriminating faculty is not present or not honoured is the potential for abuse.

When I look into somebody’s eyes and experience the opposite of intimacy, I know this won’t change if I work on it; I know it says nothing about my capacity to connect intimately in many alternative ways; I know that I am simply experiencing my own neurology. Well, I’ve experienced it now, and my sense is that experiencing it repeatedly in this way isn’t going to serve me. In fact, it feels masochistic – or maybe sadistic, because I don’t feel as if I ever consented, not really. I don’t feel as if I was given the opportunity to make an informed choice.

My own experience as a participant is always educating me as a facilitator. How can I create something like this in my own work or not create something like that? So in a way this is myself talking to me here, but I’m also talking to you, out-there facilitator. If I know the structure right at the beginning, I have the opportunity to make a choice about whether or not it’s going to be helpful for me to be in it, because I don’t want to be unnecessarily bruised. I can give informed consent.

For me, offering choice in this way means that we are willing to let our students be adults. We are prepared to honour their personal experience and their inherent ability to feel into what they need, even if they have just walked in the door and never encountered the practice we are offering before. It means we are holding the intention of being as alert as we can to all the subtle ways in which we might be imposing our own preferences and aversions, our maps, our ways and our styles, even our own neurology, on our students. In a sense, we are all imprisoned in who we are, so this requires many leaps of the imagination. I have to be comfortable in my ignorance of you, willing to let go of cherished notions about how I offer my work and how you receive it. I have to be willing to go beyond the point where I think I’ve already done all of this.

I found it very difficult to emerge the ending of this article. I think I wanted some sort of resolution, which, for me right now, isn’t there. I wanted not to offend anyone – always a killer. What I’m actually left with is a sense of conflict. I’m an out autistic in a neurotypical world. Part of me wants to fit in, because that way you survive. You even get to access some of the privileges: work, community, a nice house. The awareness of how absolutely crucial it is to acquire neurotypical behaviours, to be able to pass seamlessly, was borne in on me the day I started school, and I spent many years learning how to look normal and say the right things at the right times. The alternative was to be an outcast. Now, with a diagnosis, an awareness of (dis)ability politics and a commitment to neurodiversity, I’m trying to unlearn some of this. It’s painful and laborious, like peeling off filo-pastry layers of skin. I have naturalised a lot of neurotypical behaviours. Although they aren’t innate, I’ve repeated them so many times, they almost could be. I’m like a person who left her homeland as a small child and learnt a whole new way of life, but deep inside still moves to the beat of the old country. Or as an autistic friend of mine put it, it’s like being an undercover detective. In the end, the two lives become so ravelled up, you hardly know which one belongs to you any more.

And I still don’t know how to finish this article.