‘I thought dancers had to have two arms and two legs’
By Kat Hawkins
I knew my legs and feet intimately because of my years of dancing - every callus, every sinew, every bruised toenail. I spent so much time with them, taping them up to go into pointe shoes, taping them up again after they’d been cut from pointe shoes, massaging my arches, pointing, flexing.
They were part of my body, but also tools, crucial for doing what I loved most, which was dancing.
Even as I write this I can feel the nerves in the ends of my stumps firing. The memory of my feet is a physical sensation, a pain, sometimes similar to pins and needles, but on other days the ghosts of my feet can explode like a flash, sharp and horribly painful.
I will never forget the thrill of dance performances when I was growing up.
Rushing through the wings, tingling with anticipation, nervously touching the velour curtains with the tips of my fingers as I waited side-stage. When my turn came, I would take a deep breath, crack my toes one by one, and step out into view.
When I performed, I felt in control. Time stood still as I leapt and pirouetted. I held the audience’s emotions in my grasp. Dance was like a language that my body had learned over a lifetime.
‘I feel really ill’
Then, on 4 December 2007, everything changed.
I woke up delirious.
My memory of that morning flickers, like a buffering video that stops and starts, but I remember unlocking my bedroom door, pulling it open and stumbling into the corridor.
The lights felt as though they were piercing straight through my head as I fell from wall to wall and eventually made it into the kitchen, where my shocked flatmates became confused as I slurred my words.
“I feel really ill,” I managed to get out as I slumped down on the sofa.
I didn’t know it then, but I had meningitis B, a bacterial infection that can kill in four hours.
I was a first-year student at Leeds University.
In that first term I had spent most evenings with the uni dance society. I was happily settling in to a new-found independence - meaning I cooked my own fry-ups.
And then suddenly that morning, my new life was swept away in a haze of vomiting, unconsciousness, blue lights and A&E.
Kat dressed up for the 2007 Freshers' Ball
The way meningitis B can attack the body means that in some cases it turns to sepsis, and that’s what happened to me.
While I was sitting in A&E, a doctor spotted the start of a rash on my wrist and knew straightaway what was happening.
My Harry Potter pyjamas were cut off with scissors to reveal the rash had already spread over my body.
What follows is a blur.
I was placed in an induced coma while my body was at war with itself.
My immune system went into overdrive to try to get rid of the bacteria - but there was collateral damage when instead of just fighting the infection, it began to attack vital tissues.
Blood rushed away from my limbs to my internal organs to save them.
“We’re going to have to amputate your leg”
My parents and brother arrived at the hospital to find me quarantined and strapped up to an entire room’s worth of machines.
That night they were told there was nothing more the doctors could do, that the chances were that I wouldn’t live through the night.
But I survived those crucial 24 hours. My blood pressure rose, my heart rate slowed, and for just under three weeks in intensive care, doctors and nurses worked around the clock to begin my recovery.
“I’m really sorry but we’re going to have to amputate your right leg, it’s not healing.”
I will remember those words forever.
When the doctor told me the news, I’d been in hospital for two months and didn’t know I had the energy for a scream. But I did.
I can’t exactly remember what happened next - my memory is still protecting me.
I had spent my 19th birthday and Christmas critically ill and when New Year’s Eve came around I found myself on a kidney ward. As the clock hit midnight I was dozing. The nurses came in with a celebratory glass of milk.
A few hours earlier I had been looking out of the window, wishing I was somewhere else.
My kidneys had failed, and I’d been having dialysis every day. This was considered more important than my legs at that time. Two tubes had been fixed into my neck and I would watch as my blood left slowly out of one tube, was cleaned, and returned to my body through the other.
“I won’t be able to walk, let alone dance”
But my legs couldn’t be ignored. Dressings were changed daily. I shrank away from the sight as the bandages were pulled back.
My legs were becoming less and less a part of me.
They had turned black from the knee down and my toes looked like coal, as if I could flick them and they’d disintegrate.
This, I now recognise, was the beginning of my experience with phantom pain. It felt as if cats were nibbling my toes - a tingling feeling, as though my legs were still alive, but heavy and unmovable.
After that first operation the nurses pulled the starchy hospital sheet back to reveal an empty place in the bed where my calf and foot had been.
Looking down at that space, seeing a piece of me gone, was a strange moment I’ve never quite managed to come to terms with. I had a feeling of resigned hopelessness - that, despite wanting so much for things to be different, I knew they wouldn’t be.
Two months into my hospital stay it was decided that my left leg would also need to be amputated, about 10 inches below the knee.
I was a first-year student at Leeds University.
In that first term I had spent most evenings with the uni dance society. I was happily settling in to a new-found independence - meaning I cooked my own fry-ups.
And then suddenly that morning, my new life was swept away in a haze of vomiting, unconsciousness, blue lights and A&E.
Kat dressed up for the 2007 Freshers' Ball
The way meningitis B can attack the body means that in some cases it turns to sepsis, and that’s what happened to me.
While I was sitting in A&E, a doctor spotted the start of a rash on my wrist and knew straightaway what was happening.
My Harry Potter pyjamas were cut off with scissors to reveal the rash had already spread over my body.
What follows is a blur.
I was placed in an induced coma while my body was at war with itself.
My immune system went into overdrive to try to get rid of the bacteria - but there was collateral damage when instead of just fighting the infection, it began to attack vital tissues.
Blood rushed away from my limbs to my internal organs to save them.
My parents and brother arrived at the hospital to find me quarantined and strapped up to an entire room’s worth of machines.
That night they were told there was nothing more the doctors could do, that the chances were that I wouldn’t live through the night.
“We’re going to have to amputate your leg”
But I survived those crucial 24 hours. My blood pressure rose, my heart rate slowed, and for just under three weeks in intensive care, doctors and nurses worked around the clock to begin my recovery.
“I’m really sorry but we’re going to have to amputate your right leg, it’s not healing.”
I will remember those words forever.
When the doctor told me the news, I’d been in hospital for two months and didn’t know I had the energy for a scream. But I did.
I can’t exactly remember what happened next - my memory is still protecting me.
I had spent my 19th birthday and Christmas critically ill and when New Year’s Eve came around I found myself on a kidney ward. As the clock hit midnight I was dozing. The nurses came in with a celebratory glass of milk.
A few hours earlier I had been looking out of the window, wishing I was somewhere else.
My kidneys had failed, and I’d been having dialysis every day. This was considered more important than my legs at that time. Two tubes had been fixed into my neck and I would watch as my blood left slowly out of one tube, was cleaned, and returned to my body through the other.
“I won’t be able to walk, let alone dance”
But my legs couldn’t be ignored. Dressings were changed daily. I shrank away from the sight as the bandages were pulled back.
My legs were becoming less and less a part of me.
They had turned black from the knee down and my toes looked like coal, as if I could flick them and they’d disintegrate.
This, I now recognise, was the beginning of my experience with phantom pain. It felt as if cats were nibbling my toes - a tingling feeling, as though my legs were still alive, but heavy and unmovable.
After that first operation the nurses pulled the starchy hospital sheet back to reveal an empty place in the bed where my calf and foot had been.
Looking down at that space, seeing a piece of me gone, was a strange moment I’ve never quite managed to come to terms with. I had a feeling of resigned hopelessness - that, despite wanting so much for things to be different, I knew they wouldn’t be.
Two months into my hospital stay it was decided that my left leg would also need to be amputated, about 10 inches below the knee.
I was 19 years old and didn’t know how I would even begin to think of my body without my legs.
I remember thinking: “I’m not going to be able to walk, let alone dance.”
I was plunged into a fog of confusion and grief, because I had a certain idea of how a body - my body - should be. I still viewed impairment as a weakness or a vulnerability.
How could I look at myself in the mirror? Would anybody find me attractive again? How would I navigate the world?
Long trousers, no heels
I moved back in with my parents and over the next few months learnt how to use a wheelchair, crutches and - slowly - two prosthetic legs.
When my new legs first arrived, I remember looking at them in the corner of my bedroom and despising them.
I did rehab twice a week, and worked hard. In my parents’ hallway - the same place where I had broken in new ballet pointe shoes - I learned to put all of my weight through plastic and metal, taking my first tentative steps.
I would tense the muscles in my stumps in the hope that doctors would one day be able to give me leg transplants or prosthetics that could be muscle-controlled so I would be able to do pointe again. But firing nerves - sharp and painful - reminded me that this was some faraway fantasy.
In the end, my years of childhood dance lessons helped speed up my ability to walk and get around on prosthetics.
“It’s your core strength balance,” my physio explained, as I struggled to hold on to the bars while pulling my incredibly baggy jeans up around my waist. Months of life-support, medication, feeding tubes, trauma and surgeries meant I had lost a lot of weight.
“We have had amputees dance before,” she added. “It won’t be anything like you’re used to, but we might be able to get you back to a club dance floor.”
This was not what I had been hoping for.
Before the meningitis, my friends and I had just started going out to nightclubs. I loved the ritual of getting ready and going out until the next morning, peeling off my heels when I got home and crashing into bed.
A lot of my confidence had come from a certain kind of femininity and sexiness - and high heels had been a big part of that.
But now, shoes were my nemesis. Wearing any kind of heel, even the smallest, meant I couldn’t walk.
I wanted to go back to the way I had been. So much so, that on one of my first nights out with my prosthetic legs I borrowed a pair of heels from a friend. But when I arrived at the bar I realised I had made a really bad mistake - I kept falling over and had to hold myself up on the bar stools.
I called my dad and he drove me home, heels discarded in the back.
A few months later I returned to university, back to the same halls of residence.
Everything was exactly the same, but at the same time profoundly different.
There aren’t many 19-year-olds who have been on life support with breathing tubes filling their lungs with oxygen. There aren’t many who have been through the terrifying ordeal of thinking that doctors and nurses are attacking them - when they’re actually trying to save your life. And there aren’t many who have had bits of their body removed or changed beyond all recognition.
So it puts you in a strange place, really.
I tried to bulldoze my way into my “old life” - pushing my body way beyond its capacity. I walked long distances despite excruciating pain, never saying out loud: “I actually need a seat.”
I didn’t want anybody to know I was an amputee, that I was disabled.
I wore trousers all the time, scared that if they were even an inch too high, people would see, and then I would have to talk about what had happened.
I struggled with people staring, and flinched when I caught myself in the mirror.
As much as I could, I pretended it hadn’t happened.
Many people use dance as a form of healing. But for years after my legs were amputated, dance became a part of my trauma.
I would have recurring dreams in which I was dancing, leaping across the room, doing pointe. But the dreams would always end in the same way, with my body coming slowly to a standstill and me being rooted to the spot.
I would wake up every time feeling sick.
When I returned to university I did go back to my old dance society, to watch them rehearse and to help with auditions. They asked me to choreograph a piece for them and I agreed.
But when I sat in my room, coming up with choreography ideas that I was physically unable to do, it became too much. I had a panic attack. Heart racing and struggling to breathe, I rushed to the toilet to be sick.
And so I put dance away in a box that I firmly sealed.
Being so close to the dance community was just too hard.
A few months later I returned to university, back to the same halls of residence.
Everything was exactly the same, but at the same time profoundly different.
There aren’t many 19-year-olds who have been on life support with breathing tubes filling their lungs with oxygen. There aren’t many who have been through the terrifying ordeal of thinking that doctors and nurses are attacking them - when they’re actually trying to save your life. And there aren’t many who have had bits of their body removed or changed beyond all recognition.
So it puts you in a strange place, really.
I tried to bulldoze my way into my “old life” - pushing my body way beyond its capacity. I walked long distances despite excruciating pain, never saying out loud: “I actually need a seat.”
I didn’t want anybody to know I was an amputee, that I was disabled.
I wore trousers all the time, scared that if they were even an inch too high, people would see, and then I would have to talk about what had happened.
I struggled with people staring, and flinched when I caught myself in the mirror.
As much as I could, I pretended it hadn’t happened.
Many people use dance as a form of healing. But for years after my legs were amputated, dance became a part of my trauma.
I would have recurring dreams in which I was dancing, leaping across the room, doing pointe. But the dreams would always end in the same way, with my body coming slowly to a standstill and me being rooted to the spot.
I would wake up every time feeling sick.
When I returned to university I did go back to my old dance society, to watch them rehearse and to help with auditions. They asked me to choreograph a piece for them and I agreed.
But when I sat in my room, coming up with choreography ideas that I was physically unable to do, it became too much. I had a panic attack. Heart racing and struggling to breathe, I rushed to the toilet to be sick.
And so I put dance away in a box that I firmly sealed.
Being so close to the dance community was just too hard.
‘I’ve always been a dancer’
I finally stepped back onto a dance floor in 2014 - seven years after getting ill - for an audition to join the Candoco Dance Company.
It took a lot of courage - a few years earlier I had turned up for a dance class only to be told I wouldn’t be able to keep up.
Candoco is a contemporary dance company made up of disabled and non-disabled dancers.
Turning up that day was terrifying.
People were warming up, stretching, rolling their feet on tennis balls, getting changed - the things dancers do.
It was an audition, so the atmosphere was intense - but the presence of other disabled performers instantly had a liberating effect on me. I felt safer. Here were others who knew what it was like to be stared at, to feel like they didn’t fit in.
There was an emphasis on adaptations, a word I’d never even heard said in a dance studio before. We would be shown a phrase of choreography and then spend some time adapting it for our own bodies and assistive devices.
Wheelchairs, prosthetics, crutches and canes were no longer just medical aids, but objects filled with possibilities.
“I learnt about fear - the fear of being in my body and of showing it to others”
What I didn’t expect was how physically painful it would be. It was the first time I’d tried to dance in this way, with my prosthetics both on and off, and by the end of the morning I’d scraped all the skin off one knee.
I also hadn’t expected how much being back in that environment would affect me emotionally. I was filled with a huge sense of grief - for how my body had been, for how my body had moved, for my legs.
And so, even though I made it to the next stage of the audition, I chose to leave at lunchtime. But I kept in touch with Candoco, and over time started to work with them.
It was there that I began to learn about fear - the fear I felt at being in my body and of showing it to others. As soon as I was in an environment where that fear was removed, where all bodies were equal, I began to focus on possibilities.
Being in those spaces changed everything I had ever thought about what dance was and who it was for - and since then I have deconstructed everything I thought I knew about the art form.
Dance is for everyone, it’s only the way it is traditionally taught that makes us think it’s not. I didn’t know how to even think about dancing as an amputee, because I had never seen any dancers that looked like me.
It took me so long to call myself a dancer again. For ages I was like, “No that’s not me, that’s somebody with two arms, two legs, standing.”
Turning up that day was terrifying.
People were warming up, stretching, rolling their feet on tennis balls, getting changed - the things dancers do.
It was an audition, so the atmosphere was intense - but the presence of other disabled performers instantly had a liberating effect on me. I felt safer. Here were others who knew what it was like to be stared at, to feel like they didn’t fit in.
There was an emphasis on adaptations, a word I’d never even heard said in a dance studio before. We would be shown a phrase of choreography and then spend some time adapting it for our own bodies and assistive devices.
Wheelchairs, prosthetics, crutches and canes were no longer just medical aids, but objects filled with possibilities.
“I learnt about fear - the fear of being in my body and of showing it to others”
What I didn’t expect was how physically painful it would be. It was the first time I’d tried to dance in this way, with my prosthetics both on and off, and by the end of the morning I’d scraped all the skin off one knee.
I also hadn’t expected how much being back in that environment would affect me emotionally. I was filled with a huge sense of grief - for how my body had been, for how my body had moved, for my legs.
And so, even though I made it to the next stage of the audition, I chose to leave at lunchtime. But I kept in touch with Candoco, and over time started to work with them.
It was there that I began to learn about fear - the fear I felt at being in my body and of showing it to others. As soon as I was in an environment where that fear was removed, where all bodies were equal, I began to focus on possibilities.
Being in those spaces changed everything I had ever thought about what dance was and who it was for - and since then I have deconstructed everything I thought I knew about the art form.
Dance is for everyone, it’s only the way it is traditionally taught that makes us think it’s not. I didn’t know how to even think about dancing as an amputee, because I had never seen any dancers that looked like me.
It took me so long to call myself a dancer again. For ages I was like, “No that’s not me, that’s somebody with two arms, two legs, standing.”
It might sound as though I have it all worked out, but that’s definitely not the case.
There are challenges - say, when your leg falls off during a performance.
Last October I took part in Normcore, a contemporary piece about body politics by the Portuguese choreographer Dinis Machado. I was the only physically disabled performer out of five.
Rehearsals went well, but on the morning of the premiere in Portugal I couldn’t keep my prosthetic leg on. One of the metal inserts had worn down, probably because of all the dancing I had been doing. It wouldn’t stay in place.
Normcore rehearsals
We found a local prosthetist, but it was bad news and my leg couldn’t be fixed.
With no wheelchair to fall back on, the best option was to use a knee sleeve to keep my leg on. With each step it slipped up and down, clicking and clunking.
Normcore rehearsals
I began dancing that night with all the energy I’d previously given. But halfway through, I felt my leg go.
What could I do? I sat down and made it part of the piece.
Because when we put our bodies in these vulnerable places, who knows what happens?
You go with it, and hope the audience learns something in the process.
Adapting to situations is a daily occurrence for most disabled people - living in a world not built for us.
Too many arts venues are inaccessible - long flights of stairs and no accessible toilets are all too familiar, never mind uncomfortable seats, no subtitles and no sign language interpreters or audio description.
And that’s before factoring in that walking on prosthetics is really painful. Sometimes my legs will be so swollen in the morning that I won’t be able to get my prosthetics on.
So the choice to dance is a difficult one, weighed up by what it brings to my life. It helps me to communicate, and work through my feelings.
When the late disability rights advocate Stella Young said: “In a body that looks like mine, one is never ‘just’ dancing”, I know what she meant. Putting your “different body” on stage over and over again is a political act.
It’s important that we begin to think differently, and I hope to be a part of that change.
It’s been a long process, getting to know my body again, appreciating it and being kind to it, despite feeling as though it works against me at times.
Sometimes I find myself mourning the dancer I could have been. I wonder whether I would still be doing it now.
I do know I wouldn’t be in the spaces I am now, meeting the people I meet, tackling the issues we tackle, dancing in the way that I dance.
I might not have known about disabled bodies, or the disability justice movement.
Being a proud part of a disabled community has brought people into my life who are passionate, creative and determined. They have made me understand the world in a more radical way than I would have ever thought possible.
And for that, I am thankful.
Credits
Author: Kat Hawkins
Video/photos: Rhian John-Hankinson
Additional photos: Hawkins family, Candoco, Mark Sedgwick, Dinis Machado, Sophie Mayanne/Behind the Scars, Getty Images, Alamy
Production: Paul Kerley
Editor: Vibeke Venema
Long Reads editor: Kathryn Westcott