I don’t dance like the other cats

By Katy Barnett | 04 Oct 20

I don’t dance like the other cats

I’m spasticus, I’m spasticus

I’m spasticus autisticus

I dribble when I nibble

And I quibble when I scribble

Hello to you out there in Normal Land

You may not comprehend my tale or understand

As I crawl past your window give me lucky looks

You can be my body but you’ll never read my books

Lyrics to ‘Spasticus Autisticus’ from Ian Dury’s 1981 album Lord Upminster

My first published work of legal academic scholarship (on native title law) was entitled ‘Two Steps Forward, One Step Back?’ Twenty years later, as I learn to walk, I wonder if the title should have been reserved for my own journey. To explain: I am a law professor, a mother and an author. I have had a mild form of cerebral palsy since birth. I have always had difficulties walking, hence why I am learning to walk like a normal person for the first time, at the tender age of forty-something.

But if you are expecting a description of my hard life and times intended to engender pity, I advise you to stop now. First, I am not going to write about pain. Pain is, frankly, boring; there is not much to say about it. Secondly, there is a reason I quote Ian Dury’s provocatively offensive song: as a person who is spastic, it makes me laugh. Dury himself was a polio victim whose left leg, shoulder and arm withered after suffering the disease at the age of eight. Since I was young, I felt kinship with him. I am not a victim. I am simply a person who is capable in some areas and not so capable in others. I am happy to be me. If I could wave a magic wand, I’d fix my lungs first—and then my legs.

My first name is brief because I was not expected to live. It’s not Katherine or Catherine or any variation thereof. It’s just four letters: KATY. I was born at 29 weeks at a time when such babies usually died. While my mother was in labour, they told my father to think of a name for the death certificate. The name that came into Dad’s head was ‘Katy’—my parents’ friends had chosen this name for their child, but had changed their child’s name to Sarah instead. Dad told the nurses my name … and promptly fainted outside the delivery room and had to be artificially resuscitated. Obviously, I lived, because here I am now, writing this.

It must have been horrendous for my parents: their first-born child in a humidicrib, unable to be touched. My parents had booked a skiing holiday. Mum had been planning to sit in the lodge, by the fire and enjoy her pregnancy, but instead she had a tiny child whom she could not touch. The hospital said, “Go anyway: there is nothing you can do.” So they went.

When I gave birth to my first child (two days before her due date) I cried for my mother, who never got to hold me or breastfeed me like I did my own daughter.

My grandfather says I looked like a skinned rabbit, with bright red hair. I fitted in the crook of someone’s arm, and I had no body fat. I weighed approximately 1 kilogram: a bag of sugar. At first I was splayed out like the aforesaid skinned rabbit, but as I grew, my legs curled up, just as they would have if I had still been in the womb. I had my first operation at six weeks old, when they fixed a double inguinal hernia. Despite this, I was an active baby: I waited eagerly for my feeding tube, unlike many of the other babies in the ward. Mum tells me that when she finally took me home, she had a fight with the matron who did not want Mum to take ‘her baby’ away. The matron had become very attached to me during my two and a half month stay in hospital.

I was a bright interactive child. However, when I finally walked at eighteen months old, I could only walk on my tiptoes. The doctors were unsure of the cause for some time, but we now know that it is a form of cerebral palsy called ‘spastic diplegia’, common in prematurely born children. The muscles in my legs are overly tight as my brain signals to them to contract, over and over, and my calf muscles are significantly shorter than those of a normal person. It is only over the past few months that I have realised that other peoples’ leg muscles do not have a unpredictable tic tic tic, like a crazy clock. It has been confronting to discover that other people do not have to concentrate hard when walking. If you don’t watch your feet constantly in my world, you cannot be quite sure what they might do.

I still don’t dance like the other cats, in any area of my life.

How did I walk as a child? First, stand on your toes, with your heels pulled up. Take a step without bending your knees, with a long scissor-like stride, and push your backside out. For balance, put out your arms out to the side a little, slightly bent, the left arm and hand dangling. I walked remarkably fast like this, but I could also run, jump, and swim. I still cannot really ride a bike.

My parents never treated me as disabled or unable to achieve anything I wanted. I persuaded my mother to enrol me in dance classes, aged three. We were supposed to dance like cats, which meant we had to hold our “paws” downwards, clenched fists pointed down at the floor, in front of our tummies. I found the positioning of our “paws” illogical. Surely we should hold our “paws” pointing upwards under our breast, palms out, because then if we needed to get on all fours like a real cat, our paws would be in the right place? I put my argument to the dance teacher, but to my shock, she did not accept my logic. I had trouble with the foot movements too. At the concert, a row of good cats performed as instructed. One cat, however, stood at the end, her paws upwards—the logical way, I insist!—capering around in an uncoordinated manner. “Who is that child not dancing like the other cats?” one of the other parents asked my mother. My mother was stuck between embarrassment and intense pride. I still don’t dance like the other cats, in any area of my life.

Eventually, I developed a thicker skin, a dark sense of humour, and a fascination with the terrible things people do to each other.

I learned to read early. I vividly recall my sister snatching a cornflakes box away from me because I was intently reading the ingredients. “Can you not stop reading for a minute?” she said. I still haven’t stopped. By the age of seven, I had read JRR Tolkien’s The Lord of the Rings, and my life’s ambition was to be a hobbit. Alas, I am too tall to be a hobbit these days, although I like mushrooms.

I did not realise that I walked oddly until I went to kindergarten; before then I had been surrounded by the love of my family. At primary school, some kids called me “Spazzo”, and teachers told me off for “walking like that”. The best and the worst of it was, I was also clever. Obviously, I am happy that the cerebral palsy did not affect my cognitive ability, but unfortunately it’s hard to be both disabled and a nerd if you’re growing up in Australia. Alas, I was a sensitive child who cried bitterly when teased, but I was lucky to have good friends, some of whom are still close. All you need is a few generous, kind people. Eventually, I developed a thicker skin, a dark sense of humour, and a fascination with the terrible things people do to each other. I almost never cry in public, and I call my car the Spazzmobile, much to my husband’s horror.

I was tested for many conditions. They took a muscle biopsy, and it was confirmed that I did not have muscular dystrophy, but that I had an unusual ratio of short-twitch to long-twitch muscles, similar to those of an Aboriginal or African person. At the time, we brushed it off as a weird anomaly, but we have subsequently discovered that my paternal grandfather had Aboriginal ancestry. Despite my ginger hair and pale skin, some of that long ago man from Rockhampton lives on in my muscles.

When I was twelve, my orthopaedic surgeon proposed to lengthen my Achilles’ tendons—an experimental operation then, but now standard treatment. Mum and Dad were dubious, but I was adamant. I was thirteen when they operated. When I woke, both legs were in plaster, toes to knee. My calf muscles twitched uncontrollably, so they gave me Valium to stop it. A nurse helped me wash my hair in a basin at the side of the bed, some days after the operation. It made me feel human again. I doubt she has any idea of the impact she made, but I can picture her face, still.

It was impossible to feel sorry for yourself in hospital, because many of the other children were much sicker than I was: the girl with spina bifida; the boy whose foot bone was rotting away; the hairless children with bone cancer. Everyone joked with each other and the nurses because if you don’t laugh, you’ll cry. There was another boy in the next ward who had severe cerebral palsy. He indicated by means of signs that he wanted to have a wheelchair race with me. For whatever reason, they’d given me a wheelchair with very small wheels that day, so it became a fair race, because I could barely touch the wheels with my fingers. He beat me, and grinned back at me in triumph.

For the first time that summer, I wore out the heels of my shoes. Mum and I cried with joy.

I was thoroughly sick of the plaster by the end. It was itchy, hot and uncomfortable. But I was terrified of what I’d find underneath: would there be giant bloody wounds? The orthopaedic surgeon peppered me with questions about the operation. It turned out that I was the first patient who was capable of giving detailed feedback: the others had been non-verbal. I winced as the plaster saw whined and buzzed. Pink, narrow lines followed my Achilles’ tendons: no bloody wounds at all. Then I hopped off the table and tried to walk.

I fainted.

You see, I couldn’t walk. The surgeon said I should practice walking on sandy beaches. My parents followed the surgeon’s instructions and I figured out a semi-normal stomp, my feet rigid as if I was still wearing plaster. The skin on my heels hurt at first because it had never been subject to pressure. For the first time that summer, I wore out the heels of my shoes. Mum and I cried with joy.

Unfortunately, it was still obvious that something was not quite right. In a tale of ‘be careful what you wish for’, a girl in my Australian Year 9 class taunted me about my walk. I thought, “I wish you knew what it was like to be me.” One day, in Art class, while the teacher was out of the room fetching a worksheet, it became too much and I leaped up and stuffed handfuls of crayons down her dress. After four handfuls, I stopped, and sat back down and continued work. I think I scared that girl. She didn’t tease me any more.

Then my family moved to England for four years, and I sensed my chance to start anew. My English school was small and selective. At first it was difficult to fit in, as I couldn’t understand the Mancunian accent and they couldn’t understand me. Importantly, however, from the school’s point of view, I excelled in exams. For the first time, I ceased to be embarrassed about being clever and eccentric. My English school didn’t care that I wasn’t sporting. Mum became suspicious after I got an “A” for sport. She looked at me narrowly. “I’ve not been attending sport for years,” I confessed. “I don’t think the teacher knows who I am.” Mum laughed.

In my late teens I heard that the girl who had teased me had been in a car accident, and suffered acquired brain injury which affected her ability to walk. I did not feel glee: I felt horror and guilt, as if I had wished this upon her. I realised that I would not, in fact, wish that fate upon anyone. I returned to Australia when I was 18 to go to university, and saw the girl in the supermarket, on a walker. I considered approaching her to say I was sorry she knew what it was like to be unable to walk, but I was too shy. A few years ago, I was startled to read an article about her in my local newspaper: rehabilitation helped her, and I was glad.

Katy Barnett

I’ve been told that there are three psychological responses to trauma: denial, throwing yourself into work, and emotional outbursts. My family specialises in denial and throwing one’s self into work: good Stoic, working-class attitudes. I did not tell many people about my physical issues. Not at high school in England, nor when I returned to Australia to study Arts and Law at university. It was a tender space which I never touched.

There were times when I couldn’t avoid it. I tried to learn karate at university. I failed the first yellow belt several times. One of the teachers tried to guide me. After about half an hour, he looked at me curiously. “You move oddly. Do you have a medical condition?” I quit karate.

During job interviews for clerkships at law firms, one sneering blond fellow said, “You aren’t a team player. You haven’t played any team sports.” I resisted a sudden impulse to throw my water glass at him, and said instead, “I have enough knowledge of my own abilities to know I would be a liability for any team.” My mind was already back at Primary School, and the sporting teams fighting to not have me on their team. I hadn’t realised that to be a lawyer, knowledge of the law wasn’t the only thing.

Later, another interviewer asked me, “What disadvantage have you suffered?” This was, if anything, worse than the people asking me about what sports I’d played. My disability did not occur to me as a possible answer, until years later. It is not a basis upon which I should get a job, or get preferment. I want to be hired because I am intelligent and hard-working. Until now I have found it hard to expose those painful experiences to a stranger. I said, “I consider myself very lucky,” because I do.

Suffering does not always make you a better person.

It doesn’t follow that I am good or wise simply because I suffered hardship. Suffering does not always make you a better person. For some people, it may enhance their empathy and understanding of difficulty, although I think—for what it is worth—that I am naturally empathetic. But not all people respond like that to disadvantage. Some people want to take revenge, and flip the tables on those who bullied them. I do not: I felt no joy, only horror, when I heard about the girl who had teased me. For others still, I suspect that pain makes them solipsistic, focussed on the self and their own suffering. I deal with suffering by making jokes, and by living in intellectual and imaginary realms in my head.

I married a wonderful man, and we have three children. In my head, I was not disabled. But then, I had several bad falls, and had to use a walking stick. I had difficulty standing straight, and the pain was constant. I put on weight and became unfit. Someone lectured me about the importance of exercising. I wanted to scream at her, “Do you realise how hard it is? I can’t do the same things as you!” Then I realised that I’ve been pretending to myself (and everyone else) that I can. In 2018, a neurologist confirmed that I have cerebral palsy, and referred me to a specialist. After a year, it became clear that physical therapy alone would not suffice. In January 2020, I had Botox injected into my calf muscles, which will a recurrent necessity for some time, as it stops my muscles contracting constantly.

Simple acts of kindness make the world keep spinning.

It has been challenging: a week after the Botox was injected, I could not walk for some days. I said to my daughter, “Can you explain how to walk?” She stared at me. “It’s automatic?” No, it’s not for me. But it has also been a revelation: the tic tic tic has reduced, as has the pain. I have been learning how to walk properly. Previously, I had mimicked the action of other people (imperfectly) but I did not realise that other people actually push off with their toes, nor that they bend their knees when walking. I may not dance like the other cats, but I am learning to walk like them, and I’m in a lot less pain. I am grateful for health professionals, for modern medicine, and for the friendship and support of friends and family.

They sometimes say ‘You can’t teach an old dog new tricks’. This old dog is learning new tricks. She hopes that other kids like her get inspiration from this tale, and that even in these hard times of isolation, we remember that simple acts of kindness make the world keep spinning.