I am transforming: skin turning pallid white, teeth sharpening to fangs, hair hardening into spikes. My eyes darken and stretch upwards and my cheekbones protrude and my brows crease down into a grotesque scowl. I am a monster. I am quivering with fear. The others – the soldiers – are lined up, and we walk the corridor and I go to my spot on my own and wait until it is my turn. The moment nears with a beat I’ve learnt and dread. And then I am creeping through the dark, stepping my feet and clawing my arms in an exaggerated parody of the creature I’d been told to summon. But there is no feeling and it is lifeless. I am lit in a ring of intensity, and through the halo and brightness is the gaze of the audience and I am petrified. In the heat of the spotlight the paint on my face is a hot skin. I look through this mask, feeling nothing of what it is meant to mean; I can only be a ten-year-old boy. I attack Soldier 3, and Soldiers 4 and 6 and 1, batting away their cardboard shields, and they fall beneath me. I have to return later and again, and then Beowulf slays me.
After the make-up had been wiped from my face and I had changed out of the costume, I met my parents in the hall and wanted them to stop talking to the teachers and take me home, and I felt ashamed and confused. I had wanted to be Soldier 5, but was given the part of Grendel.
The original Beowulf texts used many of the Old English phrases for the monstrous to describe Grendel. One that’s been up for grabs with modern critics and translators is wiht unhælo. While wiht is normally ‘creature’, unhælo is less certain. It’s been interpreted as ‘evil’ or ‘unholy’, so Grendel becomes the ‘unholy creature’; but unhælo turns out to be the closest word Anglo-Saxon had for ‘disability’, describing the disfigurements of disease and congenital conditions. With this reading, Grendel becomes ‘being of sickness’ or ‘unhealthy being’. It’s another myth in which perhaps the inspiration for the monster wasn’t some magical beast, but a disabled person, cast out and made evil – a figure of fear and loathing.
The monstrous has been many things in the past, but mostly it is what we don’t understand and what is frightening – distant lands and the foreigners who lived there, at the unexplored edges of the map where we wrote here be dragons; it’s those who behaved or looked different, the lesbians we turned into witches or the deformed babies who became omens; it’s the technology we couldn’t yet comprehend – it was a metaphor for our anxieties. We still create monsters. They’re the heinous criminals and natural disasters in the news headlines. Monster storm. Monstrous virus. The monstrous serial killer or paedophile. We turn threats to our culture and society into monsters, which can then act out our fears at a safe distance. It’s a way of separating from ourselves what is threatening, making it other, but it’s also a way of casting out the monster that we see when we hold up the mirror to ourselves.
To become Grendel was too difficult for the ten-year-old me. During rehearsals, in those brief moments when I did get out of myself, did act, it felt dangerous, as if I might lose a part of myself. In the end I couldn’t bring anything to the performance, and the director – an English teacher who took me to one side for a pep-talk after the dress rehearsal and desperately tried to save his production – shrewdly decided to use a strobe light over most of my scenes, so the awkward ten-year-old with tears in his eyes was frozen in flashing stills of lamely wheeling arms and falling soldiers. I never went on a stage again and, from then on, I’d be found in the school-play programme as Lighting assistant or Backstage 2.
It felt the same after I lost my legs. I was the ten-year-old boy again, turned monstrous and on a stage I didn’t want to be on – the lead in a play I didn’t want to be in. Everyone was watching to see what would happen, to see the transformation I had made. The visitors, the letters and cards, the press articles, the knowledge that everyone was asking How is Harry doing? put me at the centre of a very hot spotlight. I was Grendel again, a ‘being of sickness’, with a body disabled. I wanted everyone to leave me alone – for the play to end.
I’ve searched out Grendel and Quasimodo and Frankenstein’s monster: ‘a figure hideously deformed and loathsome; I was not even of the same nature as man’. Franz Kafka’s Gregor Samsa – a travelling salesman waking, transformed, from anxious dreams in The Metamorphosis – might be the closest to what I experienced. To wake one day as a monstrous insect, stuck on your back, spindly legs thrashing ‘helplessly before his eyes’, unable to roll over; and the strangeness of not being who you used to be, turned into something that sets you apart from those around you.
There were the practical implications of my disability that set me apart. The one that seemed easiest to reconcile was that I couldn’t do the job I loved any more. Although there were short-lived fantasises that I might be able to go back and be useful, deep down I knew I could never be a soldier again. How this felt, more than anything, was embarrassing. I was meant to be lucky – luck being a basic attribute of any good soldier – but I’d made a mistake, unlucky or not, and that was profoundly embarrassing, in a professional sense. In time I got over this – it was even a release; I could do whatever I wanted now. But embarrassment went deeper, linked to other more difficult aspects of who I am, and this took longer to come to terms with. I was embarrassed by the changes in my body (yes, by what it meant I couldn’t do, and by the dependence I felt on others), but mostly by how it looked: by being in a wheelchair, by the unnatural way I walked on prosthetics or, as a friend once said to me, ‘You walk like you’ve got a carrot stuck up your arse.’ All good, fun teasing at the time and I laughed, but it was a stake to the heart I’d never be able to forget. I’d worked so hard to make the way I walked look normal. The image and character I had projected to the world were gone – and it was all tied up with the anxieties many twenty-six-year-olds would have: will anyone fancy me?
If embarrassment is the feeling we get when we violate the particular persona we want others to see, I was awash with it for many months, years even. It did fade as I became comfortable with my new body and the experience of the world it gave me, and as I discovered that I was accepted – and could be loved. But embarrassment was tinged with shame, and that has lasted longer. While embarrassment is all about those personal standards we set for ourselves, shame is what we experience when we feel we’ve failed to live up to a shared standard of the society or group we are a part of. If there’s something about us that doesn’t fit with what is considered normal and natural, we fear we might be thrown outside the group. To where the monsters are banished.
Being ashamed of myself was all tangled up with not being able to show any vulnerability. I was a soldier, and being vulnerable (especially physically) was weakness. I’d been in an environment where it was normal and acceptable to say ‘man up’, or ‘grow a pair’, or ‘go sign a backbone out of the stores’ to someone who wasn’t performing as they should, even to yourself under your breath. There were lots of these motivational sayings – ‘pain is just weakness leaving the body’ – some of them unrepeatable, and they also had a lot to do with shaming. At the time they seemed appropriate, part of the military code or game we’d signed up to. There was a line at which it stopped, when someone genuinely needed compassion, but the bar was high. It can be hard to defend this mentality to someone who hasn’t been in a similar environment, but when you are in a team that has to go into combat, which might be the absolute aggression of a hand-to-hand gutter fight to the death, you have to be more ruthless than the opponent. There is little room for weakness when the result of not winning is second place, and second place is death.
This might actually have been an advantage during the physical and mental challenge of early rehabilitation. Just putting on the prosthetics every day, despite the pain, with the discipline and determination of someone who refuses to show any vulnerability or weakness, perhaps leads to a faster recovery. It may still stand me in good stead, helping me to continue the daily routine of donning my legs, despite the discomfort and the little voice saying, Have a day off today; I have a mantra to say against it: Come on, get a grip of your body, Harry. But in so many other ways it was damaging.
I don’t want to overstate this, as it wasn’t my whole experience, and many things can be true at once. My identity was in flux. We so often think (or society tells us) that you can only be one thing, when actually you can be simultaneously getting better, working out a new life, falling in love, having children, shedding the physical trauma of injury and finding a new appreciation of life you’d never felt before, and still have a small part of yourself that is conflicted and ashamed.
At its heart, shame is not feeling good enough – of not being worthy of connection. I’d felt shame as a ten-year-old Grendel. I was terrified I’d lose the connection to the people I loved, but I didn’t really understand that at the time. And I’m not sure I understood it much better when I suddenly acquired a disability fifteen years later. The shame of being a monster made me want to shrink away and disappear. With time, I came to accept myself, but the shame remained, shrivelled in a corner.
I’d heard of disability hate-crime but had never experienced it. It felt distant and someone else’s problem. In truth, and it’s hard to admit, when I heard a story of discrimination or read an article about how this sort of abuse was on the rise – up 12 per cent in a year – I might even utter one of those sayings to myself: grow a pair. But that internal voice had more to do with my own self-preservation than with any individual out there, hidden in the statistics. It probably went hand-in-hand with the fact that I didn’t really see myself as disabled, and still found it hard to talk to someone else who was disabled (just as 67 per cent of people in the UK do). Part of me was who I used to be and who needed to be invulnerable, and part was still working out where I fitted in.
Then one evening I was walking into Clapham Junction train station, via one of the side entrances, and a middle-aged woman was walking towards me. She looked me up and down and, while sometimes people might smile or even say something nice, she said, ‘Serves you right.’
‘I’m sorry,’ I said, thinking I’d misheard her.
‘Serves you right,’ she said a little louder and then was gone with her shopping bags.
I tried to excuse it, to explain it away. I put it down to her having a bad day or being unwell – or maybe it had been a political comment on the conflicts I represented. But the shame flooded back and I couldn’t shake the unsettling feeling it gave me. As much as my partner told me not to worry, the words instantly made me utterly conscious of my disability and I felt shame deeply pervading me, in a way that is hard to describe. It made me shake and feel hot. I kept thinking I had misheard; but I was a monster again. It made me think again about those statistics – what it must be to feel this every time you leave the house.
That moment gave new perspective on my disability. Somehow injured soldier had set me apart – a special case where the issues of the disabled didn’t count. But as time passed and I left the veteran community and all the military ethos that went with it, I found I had something in common with people I never would have had, if I hadn’t been injured. The stories I heard of disabled people who had suffered hate: had eggs thrown at them because they had cerebral palsy; or were verbally abused because they had Down’s syndrome; or were terrorised in their homes by gangs of teenagers for being dependent on an electric wheelchair – the lasting impact this has on confidence and mental health now made sense. I also knew that the gulf between my experience of disability, which assistive technologies can go some way towards fixing, and those with other severe mental and physical disability was so large as to make comparisons meaningless – my experience was merely the tip of the iceberg. Yet ‘Serves you right’ had been a hammer blow.
What I began to realise was it didn’t have to be a hateful or even negative comment that made me feel a little of the shame of the monstrous; just trying to enter a building or get on public transport that wasn’t accessible could bring it on – a practical nuisance, but also a moment that marked you out as different. And, most strange, it could be a comment intended as nice or positive. It would go in waves. I’d go months without anyone seeming to give me a second look, then people would stop me in the street, or every time I went to a playground with my kids I’d have children asking me about my legs, or innocently pointing and laughing. I’d be nice and explain as best I could, trying not to alarm their hovering parents when the children kept asking, ‘But how did you lose your legs?’ and I explained what a bomb was. They were only three or four years old, and they didn’t mean me any harm, but it strained my patience and (not always – it seemed to depend on the situation and my own mood as much as anything – but often) made me aware of my difference.
Or the time I was sitting with my partner at the edge of the playground, now at the blissful stage where you can watch your children on the climbing frame rather than having to hover below them as health-and-safety officers, and a woman brought her two boys up and stood in front of me.
‘I’m trying to educate them,’ she said. (Something like this has happened on a few occasions.)
The boys looked blankly at her and me.
I said, ‘Hi, guys, nice to meet you.’
She said, ‘Your legs?’
I replied, ‘Yes?’
I didn’t want to be unkind, or to embarrass her in front of her children, but there was something about the way she had encroached and made my prosthetics the most important part of me when I was with my family, talking to my partner on a Sunday morning. I felt like a tourist attraction to be gawped at. I didn’t seem to be able to summon the energy to engage with her or give her sons the guided tour. But it was also more pervasive – I felt some of the shame I’d felt after I’d met the woman in the train station.
I hope I was compassionate and tolerant before I was injured, but I had no way of seeing my true privilege. I had everything given to me on a plate. And yes, I’m still privileged, and I’ve carried that privilege into my life as a disabled person. I will never know what it feels like to be racially abused, or persecuted because you are from a minority group. I will never know what it feels like to be a black person and have someone lock their car doors as you walk past; or how it must feel to be told to go back to your own country when this is your home; or assaulted for kissing your same-sex partner on a bus. And I know there are probably inbuilt prejudices I carry and can’t see, and may never be able to shed. But if there is one gift that my disability has given me that stands above all else, it is just the smallest window on what it is to be other.
I meet Andrew outside a London underground station, and the first thing we notice about each other is we have the same prosthetic foot – a blade that curves out behind the leg and sweeps forward to the rubber square of grip that touches the ground. By rejecting the space normal human anatomy fills, the bend of carbon fibre can generate more spring and be more efficient. It’s an unusual leg to use every day, as it’s designed for running. I’ve never seen anyone else with it. Nor has Andrew. People don’t use it because it’s hard to balance on – what it gives you in mechanical energy is paid for in stability – and also perhaps because of its weird and non-human look. Andrew likes it because of that. I’m more conflicted; I hate the way it makes me stand out. But the way it feels to walk on is too good to go back to something more conventional – function trumps appearance for me. Having the same leg makes me feel connected to Andrew in a strange way I hadn’t expected, and we are laughing and joking.
We’re meeting Sophie here. She’s making a new leg for Andrew and has come to London for a fitting. As we wait and chat, someone comes up and talks to us, wondering about an uncle who is having an amputation, and how much it all costs and where we get our legs. Then Sophie is bundling out of the underground station with bags of bubble-wrapped objects and a backpack, and we are walking to where Andrew trains at the London Dance Academy.
Andrew had a motorcycle accident nineteen years ago. ‘My bike instructor said never get on your bike if you are drunk or angry,’ he says as we walk. ‘I’d had an argument with a friend. I fell and my leg was crushed under the bike.’
They saved his leg and he managed the pain with painkillers and antidepressants. The doctors had talked of amputation after the accident, but it was only when he took up pole-dancing fifteen years later that he thought of it again. He’d been looking for an exercise he could do with his damaged leg. As soon as he tried pole-dancing he was hooked. It was new freedom for him. He could move without the leg getting in the way, but it also made him more aware of his disability, the cane he used, and the new physicality triggered flare-ups of pain. So he had his leg amputated below the knee. The rehab was hard, Andrew tells me, but now he can do far more and is in less pain.
At the Dance Academy we shuffle past people waiting for a class and into one of the small studios – mirrored walls and a pole at the centre. Andrew strips to his briefs and removes his prosthetic leg and peels down the liner. When we met I’d noticed his tattoos, and now I see they stretch blue-grey from neck to ankle – his stump is almost entirely covered with swirls and dots (he later told me the surgeons had done a great job of marrying the patterns when they sewed him back up) – and he is a striking presence, chalking his hands and hopping over to the pole. Sophie is in the corner, opening the bags and prepping the new legs; there are sockets and pieces of wooden carving laid out around her, a cogged rod that looks like a section of engine and a shaped rib of carbon fibre.
‘Can I ask you about your tattoos?’ I say. ‘I’m not saying they’re unusually—’
‘You can’t offend me, Harry,’ Andrew says and laughs. ‘I get that I don’t look like everyone else. I’m very proud of that.’
While he stretches he explains. ‘In my teens I started to think about tattoos and piercings, but it was a no-go area for my parents. I had terrible acne all over my body, on my face, chest and back; I had a bad relationship with my skin. When I moved to London in my early twenties it was starting to clear up. I was on this drug that wrecks your body but clears up your acne, and when I finished that I went and got this one little tattoo.’ He has a hold of the pole now. ‘One of those arm-bands that were trendy at the time. The tattoo artist turned out to be a pioneer of black tribal-work resurgence. I just booked another appointment and another appointment. I didn’t even know what we were going to do; we just made it up on the day. As the tattoos appeared, I suddenly started to like my skin. So I had this bad relationship and I was turning it into something that I really liked.’ He smiles. ‘Now I say it, that’s the same sort of thing I did with my damaged leg.’
‘I love the tattoos,’ Sophie says from where she is preparing. ‘It’s one of the reasons I wanted to work with Andrew.’
And then he is pulling himself up to the top of the pole. And he starts to shift his weight into a series of different moves that twist and ramp and swing off the pole.
I’d looked up a video of Andrew winning the drama category at the World Pole Sports Championships held a few months earlier. In the clip he comes onto the stage leaning on a crutch, throws it away, falls and then rises up onto the pole to tell the story of his amputation and rehabilitation. It is beautiful. It also looks effortless, with the distance of the camera and screen. But here in the studio it is totally different. I can see the strength and effort required, and can hear the skin of his hands squeaking slightly as he grips the pole and holds his body upside-down and his legs outspread, the pole vibrating under the forces he sends through it as he pendulums into another move.
He’d told me on the walk over that he’d hated his damaged leg. ‘I hated the visual of it. It was twisted and deformed – maybe not to other people, but to me it was monstrous and wrapped up in the pain of everything it represented. I had to use a walking stick; I couldn’t just go out and buy a pair of shoes, because of the heel. Sixteen years I lived like that.’
Now up on the pole, warming up with a few moves, his stump is very eye-catching. He can send it through gaps between other body parts that an able-bodied dancer couldn’t, and the weighting and balance are captivating. Then Sophie is ready and calls Andrew over, and he sits in front of her and they begin trying on the new leg. Andrew is genuinely excited. It’s the first time he sees it.
‘Wow, I’m blown away,’ he says. ‘This is so cool.’ (He says wow a lot over the next forty minutes.)
The leg is still being made – this is a fitting to check the comfort, shape and function are correct – and the surface of the limb is unfinished carbon fibre, dusty from grinding and shaping. There is something very other about the limb as Andrew pulls it on, and a sense of what it might be when it’s complete. It’s also very ‘Andrew’. The material is the same tone as his tattoos and it sweeps from his calf, narrowing like an ancient fire-blackened whale bone, widening to a clubbed end. When Andrew stands up, it looks more like a distorted, very high-heeled stiletto, and a little like an animal hoof, fuse-jointed and at once from the past and the future.
After the amputation Andrew had dreamt of having a prosthetic that didn’t look like a leg and he watches it in the mirrors. ‘The way it’s like a hoof is so beautiful,’ he says with real joy. ‘Why doesn’t everybody want hooves?’ He takes a few careful steps. ‘I can’t believe how much it feels totally like part of me.’
He lifts himself up onto the pole and starts testing it out. Suddenly he is complete, and the strangeness of the amputation is gone. At first glance you might not notice the limb as it sweeps through another arc – less strange than seeing the amputation – but then Andrew is near the top of the pole, upside-down and holding a position with the leg extending out and frozen for a moment. Even unfinished, the limb that Sophie has made is exciting, following the curves of Andrew’s tattoos, part tribal war club, part animal, part sleek high fashion.
Sophie runs the Alternative Limb Project. I’d been to meet her in the workshop on an industrial estate in Lewes. We talked about her work as she mixed pigment into silicone, feeding it between the rollers of an electric mill, which worked the colour through. She was making an ultra-realistic cosmetic limb for a farmer who’d lost his foot in a motorcycle accident. Beside her was a sheet with colour-match notes made from his skin and photographs, and a cast of his good foot. She was making an exact mirror, and would add the nails and hair, layer those blue-green translucent veins beneath the surface until no one would take a second glance when he went to the beach. This is Sophie’s bread and butter. To demonstrate how lifelike the prosthetic would be, she kicked off her plastic clogs and pulled on a pair of silicone slippers over her socks. They are exact copies of her feet, so real – with all the uniqueness of each individual toe – that it was like looking at her feet, except that you could still see her socks disappearing inside them, and they were too big. She called them her hobbit feet.
I told Sophie I felt something of the uncanny valley in these ultra-realistic prosthetics.* They are just too dead-looking for me, even the incredibly lifelike ones she can conjure. Sophie didn’t agree; these types of prosthetics could be important for people who felt the loss of their limbs keenly and wanted as close a visual replacement as possible – for some people, not standing out, feeling and looking complete, is more important than function.
It was odd that half her work focused on creating absolute copies of the human form, and the other half was playing around with what alternatives might be possible. And the workshop was filled with found objects that inspired her, wooden carvings, metalwork and a cabinet of curiosities with old prosthetics belonging to Chris, the prosthetist who worked with her. Sophie searched scrap heaps and junk shops for inspiration – she wasn’t sure what to do with a wooden canoe propped up outside the entrance. It was more artist’s studio than prosthetist’s workshop, and camouflaged among the hanging plant baskets was one of her alternative limbs, titled Vine, an upper-limb prosthetic that, instead of a hand, was a long, articulated tentacle-like appendage, which curled around objects to pick them up. If the cosmetic limbs paid the bills, then the alternative limbs were what really interested Sophie.
She showed me some of the limbs she’d made, flicking through pictures from photoshoots. First, a number of lower-limb prosthetics made for the pop-artist singer Viktoria Modesta: a black Spike – no foot – just a single shiny shard with a sharp point to stand on; one glittering with crystals and rhinestones for the 2012 Paralympics closing ceremony; and one for a Rolls-Royce campaign with a mini sparking Tesla coil inside; then Snake Arm, made for a hand amputee, an ultra-realistic cosmetic arm with a snake wrapped around it and crawling, rather unsettlingly, through a cavity in the wrist; another, playing on the tension of real and unreal, was Materialise, whose lower half of the arm was skin-like with two perfect fingers, while the upper half was made from interchangeable sections of rock, earth, cork, oil and moss – each related to a different emotional and spiritual part of the amputee’s personality; then she flicked up Cuckoo, a beautiful leg made for a contemporary dancer, carved from cherrywood, and a little steampunk, which was also a timepiece with a watch and a cuckoo that popped from the knee.
There were dozens of different limbs. All the pictures showed the amputee in a staged photoshoot, missing body part now changed into something new and unexpected. Sophie said the limbs might be about the character of the person, or a journey they’d been on, or an aesthetic she wanted to explore. Some were highly stylised and high-fashion, others more playful and personal. Sophie was now in conversation with a woman in the US who wanted to carry her mother’s ashes in her prosthetic hand – her mother had spent a lifetime blaming herself for her daughter’s congenital limb difference, and this was part of the forgiveness and acceptance. I found this heartbreaking. And she had a project going with Darlington Railway Museum to create a prosthetic leg with a model railway running around it: a miniature train on a track that passed through tunnels in the limb. She was toying with the idea of using a vaping cigarette to create the puffs of steam.
After studying special effects at university and working for a few years in film, Sophie had found her way into cosmetic prosthetics for amputees. One client, a little girl who came to see her every year, wanted cartoon characters or pictures of her family on her prosthetic. The girl had been in a pushchair when a bus mounted the pavement, killing her grandmother, scarring her mother and damaging her leg beyond repair. Then one year she came in with a drawing of a leg with little drawers to keep her things in. For Sophie, this wish to personalise a limb was an interesting aspect of rehabilitation that hadn’t been explored properly and led her to start the Alternative Limb Project. In the beginning she’d enjoyed making beautiful, sexy prosthetics, like the ones for the pop star, but she felt there was a range of other emotions to explore: ideas of identity, body image, modification, transhumanism.
As I’d left her workshop, Sophie had handed me a book she said she’d found useful. I’d thrown it on the passenger seat of the car and flicked through it when I stopped in a service station on the way home for coffee: Staring: How We Look by Rosemarie Garland-Thomson. It was an academic text about what it is to stare. While most theories of staring have focused on the power, ownership and violence of the starer, this book suggested it was not so simple, that there was an important change to be made in the way we think about staring.
Reading through the introduction reminded me how much I’d hated being stared at after injury; I would wait until no one was around before getting out of the car, anything to avoid people seeing the ungainly prosthetics – all part of the embarrassment and shame. I still find it uncomfortable, the sense I get that someone is turning to take another look at my legs when I pass them in the street. I used to spin round to catch them at it, challenging them with my own stare: How do you like that? I’ve become better at being stared at now, open to engaging with the starer with a smile or a hello.
We stare at a car crash, or some natural optical illusion, or ourselves in the mirror, but when we stare at another person it creates a connection between starer and staree. The stare is bad when we look at a car crash, or a photograph of a migrant washed up on the beach, or the disfigured human, and think: Well, at least that’s not me. But the book suggested ways in which this connection could be positive: when the stare is one of empathy; when it’s transformed into a compassionate transaction between starer and staree. We look for too long, but think, That could be me, and it makes us take action. And the book made a case for broadening what is expected to be seen in public – an acceptance of the diverse human community – so that those who are traditionally stared at, those with monstrous bodies, do not hide or allow themselves to be hidden.
It’s very hard not to stare at Andrew on the pole. But then that’s what he wants. It’s taken him a few minutes to get used to the new leg. There’s been a slight strain on his face as the prosthetic clangs uncomfortably into the pole. I imagine he’s having to adjust finely balanced moves to the new weight and length of the leg. He quickly improves, though, and strings together a sequence. ‘Oh my God, I feel like a superhero,’ he says after completing a section of routine and standing, chest heaving, beside the pole, looking at his reflection in the mirrored walls of the studio.
He wants Sophie to make him a limb that extends his abilities, and the toe end of the sleek ‘hoof’ has a notch that clips onto the pole. Over the next half hour Andrew returns the leg to Sophie with a few comments, and she disappears out into a courtyard and grinds away at the notch until it can grip the pole. It’s very like any conversation you’d hear in a limb-fitting centre – take a bit off here; it’s rubbing here; what about widening there – except you’d never see this limb in a medical setting.
When Andrew has a breather, and Sophie again takes the leg into the courtyard to be adjusted, I ask him about how important disability is to his performance.
‘I turned my disability into an identity,’ he says. ‘I have this character, my pole-performing persona, tattoo_pole_boy on Instagram. Everyone knows I’m an amputee and I’ve used that to my advantage. My disability creates a strong image. It’s hard to stand out in a sport like this. It’s led to opportunities – interviews and articles. That’s the thing with Sophie’s leg, I want to push it to that next level.’ Sophie has brought the limb back and Andrew is pulling it on again. ‘It’s also about my look. Anything that’s different from a normal leg excites me. And the odder it looks, the more human I feel. My biggest fear in life is blending in. It frightens me. I want to be noticed … I don’t want to shove it in people’s faces … but I want to stand out.’
After a final test, Sophie calls him over to try the other limbs, and Andrew takes off the pole leg. ‘I don’t want to give it back,’ he says.
While the first leg is very much for Andrew, made with his creative input and for his performance, this second limb is Sophie’s concept. Different attachments can be clipped onto a socket. She has two here today: one brass leg, taken from a piece of antique furniture, joined to a bespoke wooden carving that she’s worked on with a carpenter – it’s an intricate lattice that fits around the brass and looks like the prow of a miniature man-o’-war. The other limb uses the gearbox shaft I’d seen her unpacking earlier, and the cogs and machined metal make for a very different object. Andrew tries them both, and Sophie jots down measurements and they talk about next steps. She’ll take them back to the studio and continue to work on them before the next fitting.
This is often how Sophie works. She finds interesting people who are up for exploring their bodies in new ways, applies for funding from arts or health organisations and develops a project. Andrew gets the alternative limb of his dreams, in return for modelling some of Sophie’s imaginings – and while it is a collaboration, with Andrew bringing his individuality and opinions, the concepts that Sophie explores are more likely to end up as photographs in a magazine, or as displays in museums and galleries, than being used day to day. Reaching an audience is a crucial part of the project. She’s had alternative limbs in exhibitions across the world. More than anything, Sophie wants to promote positive debate around disability and to celebrate body diversity.
Watching Sophie and Andrew talking through the technical problems and aesthetic of the legs reminded me of the 1985 essay I’d read as an undergrad, ‘A Cyborg Manifesto’ by Donna Haraway (a professor of the history of consciousness at the University of California), who dreams of a monstrous world without gender. In the essay – a critique of the traditional feminist discourse, that is now a set text on many university programmes and has almost cult status – Haraway says the Western cultural traditions of patriarchy, colonialism and naturalism have created oppositions that dominate women, people of colour and everyone who is considered to be other. She argues that technology can be used to address the domination of these traditions and provide ‘a way out of the maze of dualisms in which we have explained our bodies’. Haraway’s cyborg is the entanglement of humans and technology (now so intimate it’s impossible to unravel), which breaks down the rigid boundaries of animal, human and machine.
The ideas in the essay have been used to give new meaning to many academic fields, often overlooking some of the original concepts of Haraway’s cyborg, but harnessing her powerful imagery. And as Andrew stands there now, with a gearbox shaft as a leg and the clunk it makes on the studio’s wooden floor as he steps, it feels easier to imagine a future where we might construct our bodies with tech, choosing to express our identity, sexuality and gender more freely; where a human–machine hybrid might make the discrimination and domination of traditional Western categories obsolete; where the boundaries become confused and less important (and that’s not necessarily making more categories, but to rid us of categories altogether). The possibilities are inherent in all the technologies we have merged with, the information networks we use to form new communities, and the augmentations and replacements to our bodies that reduce physical difference. And with Andrew having a last try on the pole with his new limb, reflected infinitely in the mirrored walls of the studio, the monstrous world does seem closer.
The monster is being reclaimed. You’re now just as likely to see a kind, compassionate monster in pop culture as a repulsive one: Darth Vader’s amputations become Luke Skywalker’s, Captain Hook’s becomes Hiccup’s, the hero of How to Train Your Dragon. There are still all sorts of ways in which the monstrous gets sexualised (it has been for centuries) – the ultimate being the ‘dating the bad boy/girl’ narrative of monster movies: King Kong (1933), Beauty and the Beast (1991) and The Shape of Water (2017). But even in these examples you can chart the shift: King Kong is slain; the Beast gets to live but, disappointingly for most people watching, turns into a rather less attractive human to better suit Belle; only in The Shape of Water does the ‘The Asset’ stay monster at the end of the film (Elisa even becomes monstrous to join him; it leans heavily on Shrek). They all asked us to feel empathy for them, but only recently can we let the monsters be themselves.
You can see the monster taking hold across pop culture. Lady Gaga – who has used wheelchairs and prosthetics in her performance, and monstrous make-up and costume, and whose 2009 album was called The Fame Monster – has fans who call themselves Little Monsters. It’s a community where they can celebrate their difference from mainstream culture, and the monster becomes a positive symbol of togetherness. This is a monster of creativity, resilience and compassion. By celebrating their difference as a community, they have formed a space in which any identity is acceptable. In the past, monsters were created by others; now, more than ever, they create themselves. Those who don’t feel they fit into the constructed categories of ‘normal’ Western society – those who felt the shame of standing outside those categories, or the shame of suppressing a part of themselves to live within them – now have new ways of expressing and disrupting what it might mean to be human.
Technology can remake the body so that it appears less monstrous, reconstructing deformities, filling the absence of amputation, replacing the loss of a sense and reducing the physical differences between people. It can hide a disability so there is no stare. But it can also help us celebrate and express the monster in us, letting us move about the world and communicate with each other to form strong networks and alliances. And it can transform the stare into something positive – Wow, your legs are cool – and even let us transform ourselves into something new that goes beyond the human.
Many people feel we need the safety of clear-cut definitions, that we must choose to fit within them. And perhaps a society of the monstrous does have risks, perhaps it is a jungle of anarchy and a threat to much that is precious – there will always be dangers in the networks and bodily transformations that technology might let us create. But while so many of us don’t happily fit within society’s traditional categories, and with the inequalities they create, surely any way in which they can be broken down, and people can express who they are, is hopeful. In the age of the hybrid human the monstrous can be a celebration of difference. We all have a little monstrous in us, don’t we?
The fitting is over, and I ask Andrew how he feels, wearing the alternative limb.
‘It makes me feel incredibly powerful,’ he says. ‘Special and unique. I want to run out of the studio and down the street to show everybody.’
* The uncanny valley is the idea that as human-like creations become more human, we feel increasingly positive towards them, until they are too human-like. It’s illustrated in a graph: on the x axis is machine–human likeness, on the y axis is likeability. The line of the graph goes up as a creation gets more human and we like it more, but there’s a point when the resemblance is suddenly nearly, but not quite, human and we feel revulsion. The uncanny valley is a sharp dip in the graph. It’s applied in both prosthetics and robotics – make them too lifelike and they are unnerving, reminding us of disease and the un-dead. As technology lets us create ever more believable humanoid robots and incredibly realistic visuals in film, gaming and VR, the concept has jumped from academic to popular culture.