“Once, in class, I’d reached out to touch a coil of braids on the head of the woman in the seat in front of me. I hadn’t been thinking at all, overwhelmed by the need to feel that intricacy of hair. She’d turned around. ‘My head doesn’t belong to you,’ she’d said icily, leaving me stuttering an apology, horrified at the way my chimp nature still popped out when I wasn’t paying attention.”—Karen Joy Fowler, We Are All Completely Beside Ourselves
Rosemary grew up with a chimp. While the chimp, in Karen Joy Fowler’s novel, acquires some human skills and characteristics, Rosemary also learns to emote and socialise a bit like a chimp. ‘There was something off about me,’ Rosemary says, ‘maybe in my gestures, my facial expressions or eye movement, and certainly in the things I said.’ Being autistic in a neurotypical world feels not dissimilar to this.
I’m not horrified by my autistic nature – far from it – but I am very aware of its capacity for toppling things over. There’s a constant negotiation going on between my authentic monkey impulses and the way I know human beings are supposed to behave. The more I like someone, the more I want to bring all of myself to the table, but the bigger the risk of upsetting the teapot. I often feel like an over-large and over-enthusiastic dog who loves you just too much, and is just a bit too excited to see you. I’m scared I’ll knock you off your feet with the full force of myself.
There are some autistic people, I’m told, who show very little affect; I am not one of those autistic people. What I feel emits from my body like cartoon shock waves in the air. For many years, I tried to curb myself. This is called passing. It hurts. I walked around in an invisible straitjacket. I fitted right in. Unfortunately, I also had an eating disorder, ongoing low-level PTSD and chronic fatigue. I felt alienated not only from everyone and everything, but also from myself. I remember writing at the time that I felt like half a pound of bacon sealed in a plastic pack.
This is one reason why I live in the intersecting worlds of dance, movement and somatics. They’re speaking-body-positive. If I want to talk to one of my teachers on the Openfloor, I most often take their hand, partly because I can use and understand verbal speech more easily that way – touch closes that heart-stopping gulf that feels insurmountable by only words; partly because I feel plugged in when I’m physically connected. I imagine sonar detection must be a bit like this if you’re a bat. There’s a constant conversation of kinaesthetic chirrupings and whistlings when bodies are in contact, exchanges of information outside the closely defined meanings of verbal language.
Being hypermobile is for me intimately and inextricably connected with being autistic. It’s as if hypermobility were my body speaking autism. Just like autistic mind, crazy wisdom body is a maverick guide who navigates without a map. We find our trajectory by following footprints in the snow and parsing the arrows the birds make when they fly. Together we have ambled through a pleasant series of left fields, wire-walked precipital brinks and nearly drowned in a lot of raging seas. Never a dull moment, and our sense of direction must somehow have been good, because, by wit or wandering, we have finally made footfall on stable ground.
Since July, I’ve been re-aligning my ribcage. This means I’m embodying – slowly – a new and more functional form of internal support. For most of my life, I thought I had a congenital scoliosis. What I actually have turns out to be some kind of lopsided shiftingness which originates, I think, in the physical difficulty of getting upright at eighteen months1 and of staying at least periodically vertical for the following 50 years. As a hypermobile person, I’ve always found standing up a dizzy kind of challenge; with insufficient fascial integrity, the forces of nature tend inexorably towards collapse.2
What I’m doing with my ribs is called the Thoracic Ring Approach. It’s genius. I’m a little bit obsessed with it. If you grew up skew-wiff and ramshackle and sidling like a nervous horse, if you feel that some part of you has always been cowering in a corner, if your ribcage feels like a collapsed accordion and you’d like it to be a chamber that honours the fullness of your heart, if you’ve been leaning on that wall for fifty years and you feel it’s time to stand up and support yourself … Oh, wait, that’s me …
Thoracic Ring Approach emerged from the physiotherapy world, but in some ways it feels to me like a somatic practice that doesn’t know it is one. Like many somatic alignment processes, it presupposes that the body is naturally intelligent – that if you remind it where its ribs are meant to go, it will recognise the original template and recruit for itself the muscles it needs to support the new-old and more functional structure. In other words, it’s different from pulleys and levers and strengthening exercises for muscles which, if you’re proprioceptively challenged, you can’t isolate anyway. Give it a clue and the body will align itself towards optimum kinetic efficiency.
In other ways, Thoracic Ring Approach is definitely physiotherapy. It operates to all intents and purposes as if the physical body were an isolatable entity that could be addressed apart from the emotional body, the body of memories, the cognitive body and all the rest. The neurological body, actually that one’s being allowed in. It’s scientific. To a somaticist (an actual one) like me, this abstraction of physical body is either funny or frustrating or stupid, depending on your orientation to it in the moment. Because, clearly, how I support myself thoracically is not only a series of physical events but speaks to how I stand up in myself in emotional, relational, cognitive and all other ways. Which means that the unacknowledged part of this work – or the part that’s acknowledged only by me – is the call to support myself really. Not the pleasing façade behind whose illusion of substance I’m actually riding roughshod over my needs, isolating myself or playing truant, but the structure in which I’m able to line myself up synergistically and inhabit myself in a steady, congruent, measured way.
How I stack up thoracically is also intricately linked with how I carry my heart. My default position for a lifetime has been rib-crests-first – in which the rib crests stick out in front of the upper thoracic ribs. I’ve always thought of this as ‘false heart’. It means that you don’t meet anything or anybody with your real one. It’s taken me 51 years to be ready to embody the centred heart. It’s a commitment not just to random acts of radical vulnerabilty, but to a permanent and thorough-going physical, neurological and emotional repatterning in favour of heart first: clearly, honestly, unapologetically.
Something else you’re supposed to pretend isn’t happening in physiotherapy is inter-personal relationship. In somatic modalities, we recognise that when two bodies walk into the same room, a third body arises. This body is the thing that’s greater than the sum of the two parts. It’s totally unique, and it holds the creative potential. Somaticists, psychotherapists, experiential dancers and movers, we take it as read that in a therapeutic relationship a large part of the capacity for healing lies in the third body. As much as techniques and technology, people heal people.
I may have had more physiotherapists than lovers. UCH is the home of the hypermobility unit founded by the wonderful Professor Rodney Grahame, hypermobility hero. As a result of – gasp! – listening to his patients, Professor Grahame was instrumental in recognising hypermobility as a thing. I’d had a few not exactly helpful physiotherapeutic interventions, but I reckoned that at UCH the physiotherapists might be a bit more than averagely clued in about working with hypermobile people, so I got myself referred – to the locum in charge of the department. For a few sessions she took a very long time to do not very much, then finally told me I was able to manage my own condition and didn’t need physiotherapy. To be fair, I probably was able to manage it better than she was doing, but I was in chronic pain, I really did need guidance, support and structure, and I felt abandoned. Well, fuck you too, UCH physiotherapy department!
The environment in the physiotherapy clinic at my local NHS hospital felt toxic. It required an enormous investment of energy and expenditure of executive function to make an appointment there and keep it, so god knows what it was like to actually have to work in the place. In a dozen or so visits, I saw three different physiotherapists. The first one was good, but on secondment from another hospital so I only saw him once. The second one kept telling me what hypermobile people like. Hello? Isn’t it my job to tell you that? (Of course, everyone knows that hypermobile people are actually a globule and we all like exactly the same things.) The third one made me cry with frustration, and I discharged myself. If I can’t stabilise my shoulder blade, a good exercise is not: raise your arm keeping your shoulder blade stabilised. (Actually this is essentially what I’m doing now, but by means so crafty that serratus anterior didn’t realise it was being asked to do something until it found out it already had.)
A friend recommended Richard at Harley St Physio. For a couple of years, until he went back to Australia, I had a really good time with Richard. Richard, if you’re reading this, I still have an extensive collection of your Thera-Bands (especially green), and I always channel you when I want to create an original latex-based exercise to address, well, pretty much anything. I resolved a longterm issue with a thickened flexor hallucis longus tendon this way when the NHS specialist foot physio said there was nothing for it but cortisone injections.
I was introduced to the Thoracic Ring Approach by Darren Higgins at Vanbrugh Physio. I love Darren (yay!). Some of what I like about this relationship is that I feel contained without being constrained in it. I’ve written elsewhere on this blog about the problem of containment in a hypermobile body. With intermittent proprioceptive feedback it’s difficult, perhaps impossible, to establish a consistent sense of body boundary. It’s like being a dot-to-dot person, parts of me constantly threatening to trickle away through the in-between spaces. Because I’m also experiencing the autistic 42 per cent extra resting brain activity3 (and the exponential multiplication of 42 per cent when, most of the time, my brain isn’t resting), there’s an awful lot more that needs containing: a babbling stream of images, emotions, thoughts, ideas, interoceptive information. To encompass the range, multiplicity and shiftingness of it all, any kind of external relational holding also has to be elastic. If there isn’t room for expansion, I feel that I’m going to overflow the space – a frightening prospect of disembodiment and dispersal.
My friend Bruce values in a teacher something he calls ‘gravitas’. He’s queer and Scottish, so imagine it with a rolling ‘r’ and a camp sort of lilt. I think what he means by ‘gravitas’, is a kind of robustness that comes from having done what you do for a long time, from knowing the back and the front and the top and the bottom of it. It comes from confidence that this is enough, awareness that there’s always more, and the recognition that whatever you hold to be known, it’s never going to be the truth for everyone. I think he also means you have a sense of humour about yourself, and that you’re grown-up enough to be able mostly to roll with things, even if they’re a bit unusual. And I think he means that on the whole you don’t get toppled by over-enthusiastic dogs.
As a series of procedures that have to be followed the way they have be followed in order for the thing to work, Thoracic Ring Approach is itself a container. I always see it as an off-white shoe box, no writing or logo’s on it, and a lid that lifts completely off. It’s new shoes when I was five. This is a very good sign, because I love shoes. When I was five, I wanted to work in a shoe shop. You know when you go to empty the shredding bin and you take the lid off and all these little curls of paper spring out? That’s what’s in the shoe box. It’s really a bit too much. Once the lid’s off, you can’t keep it all in. That’s me. Bits of me keep escaping the process. So I like the boxiness of the box and the fact that Darren keeps putting errant bits of me back in. And that other bits spring out. And he puts them back in. Though lately, I’m getting quite good at staying there.
Just now, the process is still in process. I can’t quite do this ring thing independently yet, though one day I will be able to, and in the meantime I’m relying on Darren to hold the structure – energetically because he keeps being in the process with me; and practically because every time I get creative and maverick he stuffs me back in the box; and physically because he keeps manually putting my ribs back where they’re meant to be, and telling me when I’m holding them and when I’m letting them go, so we’re – slowly – creating proprioceptive intelligence over more sustained periods of time and across different activities. And in the meantime, new and more functional emotional, relational and professional structures are aligning themselves around me. But it isn’t really linear, more like butter forming in a churn.
1. Many hypermobile children start walking late. This is a great link: http://www.skillsforaction.com/infant-joint-hypermobility
2. Hypermobile people generally find standing difficult and tiring. Because our fascia lacks the tensility to hold us up effectively, we have to recruit a lot more muscle than a non-hypermobile person does in order to be upright. For many of us, hypermobility is coupled with Postural Orthostatic Tachycardia Syndrome (POTS), which means we may also feel faint when standing still.
3. I’ve written elsewhere about this too. According to a recent study, the resting brains of autistic children produce 42 per cent more information than those of non-autistic controls.