Francesca Martinez: having the last laugh

http://www.theguardian.com/culture/2014/may/17/francesca-martinez-having-the-last-laugh-interview

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I'm wobbly. That's how I describe myself, because the words "cerebral" and "palsy" are as attractive as an ingrowing toenail. The former evokes something cold, clinical, distant; the latter sounds like Shakespeare: "God's mercy! I have a palsy! The devil feasteth upon my face!" Or something like that.

On 6 August 1978, my mum went into a London hospital to give birth. She was 19 and my dad was 21, but they found themselves alone with neither doctor nor nurse to be seen. It was a Sunday and the hospital was short-staffed because, as is well known, nobody is born on a Sunday. Mum went into labour while my poor panicking dad ran around the hospital to find someone – anyone – to help. Within a few minutes, I was born. I'm sure my parents were very relieved to see me but the doctors looked nervous – I wasn't breathing and they whisked me away. I didn't take a breath for seven minutes. Pretty impressive; now I can only hold it for about two, tops. The doctors got me breathing and I was handed back to my emotional parents, who held me for the first time. My mum was kept in overnight because they wanted to observe me. No specific reason was given and nothing was said. The only sign that something was up was when the doctor who tested newborns' reflexes came back and did the test on me again. And again. And again. A day later, the doctor handed me over and my parents took me home, blissfully unaware of any "complications". Over the next few months, they noticed that their cute little girl was also, well, a bit floppy. I had trouble holding my head up and as a one-year-old, I couldn't sit up without being buttressed on either side by pillows. At 14 months, nothing indicated that my nappy-clad bum would be leaving the floor any time soon.

After months of assurances that I was fine, my parents were at last given a diagnosis in a bland hospital room. I was two. Apparently, my brain had been starved of oxygen at birth and part of it had died. I had athetoid cerebral palsy with myotonia and ataxia. I was a little girl with golden ringlets who had been branded a Doctor Who monster. The consultant also declared, with unshakeable certainty, that I was mentally retarded. This has proved not to be the case, as I have never watched Top Gear or voted Ukip.

My parents left the hospital in a daze, trying to make sense of it, while I laughed and played all the way home. Floppy or not, I was an incredibly happy baby. My parents decided that the doctor didn't know what he was talking about and that I was perfectly responsive and intelligent. A second opinion confirmed their hunch. But this new doctor pronounced that I would still "never lead a normal life".

As a toddler, I wasn't aware of how terribly palsied my cerebrum was because I was too busy being a two-year-old. Eventually, I struggled up off my behind and decided to have a crack at this standing lark. Just after turning three, I tottered across the living room, to the delight of my mum, who was relieved at the prospect of not having to lug me around any more. To this day, my relationship with gravity remains capricious, but those tottering steps opened up a new world to me and I felt indestructible. As I got older, I brushed aside any task that proved to be physically challenging. Infant school had nothing to do with learning and everything to do with having fun. I just wanted to play, flex my acting muscles and flirt with boys. Boys were brilliant. Like me, they had no truck with annoyances like doing up buttons or tying shoelaces or any of that boring stuff.

High school was shit.

I'll elaborate. When I hit 11, there was a lot of pressure on me to go to a special school. And I don't mean Eton. But I had never been defined by my disability. The words "cerebral palsy" were rarely mentioned at home. Of course, I was happy to play with other disabled children. I just didn't want us to be lumped together in some educational ghetto. So my parents looked at schools outside our London borough and discovered Parliament Hill, an all-girls school near Hampstead Heath.

One year in and high school wasn't looking great. I supported the wrong football team, punched fashion repeatedly in the face, remained blissfully ignorant about makeup, was partial to a bit of Frank Sinatra and was shedding friends at an impressive rate. Let's face it: I was never going to be popular. My classmates were hardly ever cruel or overtly mean. They just stopped talking to me or having lunch with me. As unpleasant as fights could be, at least they involved interaction. That, I could handle. It was the frosty apathy that was corrosive, that peeled away the thin layer of confidence I held on to. I felt invisible. The difference between my home life and school was almost comical. By day I was The Undesirable One; by night and weekends I was The Beloved.

Just when I worried that I might turn into a permanently miserable wreck, something incredible happened. "You've got an audition for Grange Hill!" said my mum, unable to keep herself from smiling. I looked back at her in disbelief, struggling to process her words because they were simply too awesome to be true. For years I'd dreamed of being an actress. A laugh exploded from somewhere deep inside me.

I did two auditions, then came the long wait. Christmas came and went. On New Year's Day I finally heard I had got the part. Aside from my little brother Raoul being born, this was the Best News Ever. The dread that normally lay across my shoulders as I entered school after a holiday was strangely absent. Undoubtedly school would continue to be shit but it was the kind of shit that I could endure now because I had something else in my life: I was going to be a professional actress. Producers were busy creating a new character just for me. Slowly, word spread. Girls ran up to me in the corridors and asked if it was true, a welcome change from the usual hearty, "You're a spastic!"

It was with huge anticipation that I sat down with my family to watch my first episode. There I was on the screen. I pulled my knees up to my chin. Is this how everyone sees me, I wondered? My curly hair was huge. It looked as if it should have had a series all to itself. Then I heard myself talk for the first time. The voice emanating from the telly was a far cry from the smooth sounds I heard when I spoke. It sounded… slightly slurred. It wavered gently. Frankly, it shocked my ears. Is that how I sound to others, I thought? Then I saw myself walk. I felt my toes curl up. Fuck the voice, I thought, is that how I walk? My eyes were transfixed by the slow, jerky, laboured movements.

The knot in my stomach tightened. I couldn't believe how vulnerable I looked. My thin legs were spindly and when I walked, the concentration on my face was visible. I had no idea that my internal efforts were so clearly displayed. I looked, well, disabled. You'd think that by 15 this would have been undisputed. But no. In my mind, I'd been strong and feisty, but this creature didn't fit that image. Instead, she looked weak and a bit broken. Suddenly, I felt utterly naked.

Starting at a new sixth-form college coincided with being given my biggest storyline on Grange Hill so far, which meant that I attended the new college for only three days in the first month. My infrequent appearances were worrying to the staff and I was given an ultimatum by the headteacher. "You're going to have to choose between us or Grange Hill. You can take time to think abou–"

"Grange Hill. Sorry," I said, as I closed the door.

It was the easiest decision I'd ever made. I'd spent 11 years waiting for the moment when school would be over and, now, suddenly, it was. Luckily, my parents supported my decision. My dad, who was an accomplished writer, proposed an idea one evening: he would write a TV script for me. A week later, he presented me with it. I read it immediately. It was amazing. There was just one problem. Dad had made my character a standup comedian.

Granted, when I was younger, I'd declared that I wanted to be a comedian, after watching the genius of Little and Large. But that once invincible confidence had been hacked away, so that I no longer believed I could rise to the challenge.

On the surface, I appeared happier and more confident since leaving high school and in many ways I was. I finally felt judged on what I could do, not on what I couldn't. However, the scars of those years were embedded deep in my subconscious and my self-worth was still rock bottom. Despite my recent induction into the world of fashion and makeup, despite having friends who seemed to like me, and despite attracting the attention of a few members of the opposite sex, I couldn't shake the feeling that I was fundamentally abnormal.

I kept this negativity largely hidden from others – even my family – but its presence undermined my self-esteem, as if a streak of thick black paint had been splattered across my inner self. I devised elaborate ruses to conceal my disability. I'd go to parties and not drink because I didn't want to ask for a straw, and stand for hours because I didn't want to ask for a chair. When I was out, I'd stop in my tracks if someone was walking towards me, hoping they'd think I was normal (although there's nothing normal about a girl suddenly standing still in the middle of the pavement and staring at her feet). The disparaging voice in my head that had come to dominate my thoughts got louder. It kicked in whenever I left the house. On spotting a mother and toddler, I'd hear, "She's thanking God that her baby is beautiful and perfect. Unlike you. She's pitying you and your parents for having to cope with such a sad situation." That voice persuaded me that I had to be seen as strong and independent at all costs. With my close friends, I allowed myself to take their arm when I walked, and managed to ask them to cut up my food. But they were the only demands I made.

Several factors conspired to induce such paranoia. Grange Hill was coming to an end and, though I was satisfied with my five-year stint, I was worried about what to do next. I found it hard to imagine my agent's phone ringing off the hook with parts for wobbly girls. The act of keeping up the pretence that I'd no insecurities or problems or unhappiness or brain damage – plus the pressure I placed on my body by constantly demanding it to be "normal" – was reaching breaking point. Something had to give. I stopped going out. My brother, the only person I knew who had known me his whole life, became my closest friend.

On 5 September, shortly after my 19th birthday, I went to bed. I lay there, unable to turn my neck without shooting pains, unable to breathe. Pins and needles filled my body. This is it, I thought, I'm dying. I obsessed all night over how I'd spend my last few hours. I got up and made my way to the kitchen, pausing as I took in my family. My stomach lurched. I didn't want to say goodbye. "I'm dying," I said, calmly. Everyone looked at me, standing in my garish pyjamas in the doorway.

"What do you mean?" said my mum, concern written in her face.

"I've got some disease and I'm dying. I can't breathe properly. My neck's on fire. I've got pins and needles that won't go. I feel faint and sick."

My mum sat me down on the sofa. "Chessie, you're not dying. You're having a panic attack. Just concentrate on breathing." We sat there for a while as I tried to breathe normally. When I had calmed down, Raoul gently asked me why I was having a panic attack. I told them everything. Torrents of words and tears tumbled out of me like a wild river breaching a dam.

It took more than a year for my shredded nerves to stop jangling. I felt like a weary boxer after a long, hard fight who has finally accepted defeat. In many ways, it was a relief. But it was also a shock to have to admit to myself that I was disabled. I stopped fighting it and begrudgingly accepted the damn label with the same grace with which I'd accept a parking ticket. I didn't bloody want it but I could see no other option. It took 19 years of kicking and screaming to admit that I was brain-damaged.

Despite this crisis, I hoped I could be an actress again one day. Dad's script was progressing, after a chance meeting with the actor Anthony Andrews, who read it and said he wanted to make it into a film with me as the star. This struck both joy and primal fear into my heart. My long-time dream of starring in a movie was beginning to look strangely possible. Anthony asked if I'd consider doing some comedy training for the part. There was no way I could refuse, so I smiled and nodded, as the cold fingers of fear slowly tightened around my neck.

With a reluctance bordering on pathological, I signed up to do a comedy workshop in central London. The minute I'd enrolled, the worrying began. The only thing that stopped me backing down was the fear of losing the part. I'd never live with myself if Cameron Diaz won an Oscar for wobbling it up because I'd been too chicken. On a dark January evening, I pulled up outside the City Lit and sat there, wondering what the hell I was doing. Thankfully, I was early (I hated walking into rooms full of people) and introduced myself to the teacher, Jill, before sitting down in one of the plastic chairs. We all had to say a few words about why we were there. I said I was researching a part. And that was the extent of my verbal contribution. For six whole weeks.

I loved watching my classmates perform but I couldn't help feeling angry at myself for being so pathetic. I'd happily acted in a TV show and here I was, paralysed with fear at the thought of delivering a few lines in front of two dozen people. It didn't make sense. Except it did. I knew I couldn't stand in front of these people and be myself.

By the time the seventh week loomed, I felt the pressure building. Luckily for me, that was the day the England football manager Glenn Hoddle chose to make some choice comments about how disabled people came to be disabled. Because of karma from a past life! I privately thanked him for being such a twat and quickly wrote a short routine.

That evening, I sat in the workshop and waited. And waited. The session was nearly over.

"OK, guys, we've got time for one more person… Anyone?" Jill glanced at me. I shoved my hand up before I had time to change my mind.

I stood up shakily, gripping my piece of paper. The stage area was only a couple of metres away but it took me about 10 seconds to get there. As usual, my body was reflecting my inner state – a frenzy of panic and adrenaline – and my limbs decided to move with the jerky shakes of a 1960s sci-fi robot.

By the time I had positioned myself centre stage, I craved a cup of tea and a nap. My eyes focused on the paper, which shook as well. I opened my mouth. It was parched.

"Glenn Hoddle thinks that if you're disabled, it's because of karma from a past life…" I paused and tried to stop my legs shaking. "So what the fuck must I have done, then?" The room laughed, loud and long. I looked up in surprise.

"I mean, I must have been a bloody axe-murderer…" More laughter. I performed the rest of my short piece to laughter and applause. I knew I had delivered it badly, in a voice thick with nerves. But I also knew that something revelatory had happened. Somewhere, buried beneath the panic and fear and shaking, I felt something totally unexpected. I knew that this was what I was meant to do.

I had been so certain that the only way to acceptance was to hide my differences. How wrong I had been. I was finally seeing that if I was honest about who I was, people were more likely to accept me. My jokes had obliterated any nerves in the room. More than that, I could feel people were actually interested in my difference. It was the first time in 20 years that I'd willingly referred to my disability in public. Despite my quivering legs, a rock-solid determination throbbed through me. I wanted to be a comedian.

After the workshop, I went to the pub with the other students. People were offering me lines and making suggestions, and they felt free to make jokes about me in a way that nobody had ever done before. Towards the end of the evening, one of the older students, Dylan, walked over. We hadn't really spoken before. "I love the way your body shakes onstage. It's electric."

"Well, I hate the way it does that! It happens when I'm nervous."

"You shouldn't hate it. It's you and it's beautiful and different and musical."

"But I'm not normal!" I looked at him defiantly.

"What do you mean?" His blue eyes stared at me. I smiled to break the tension creeping up my neck.

"I'm brain-damaged." The words shot out of my mouth, clumsy sounds that halted awkwardly in the air between us.

Dylan didn't blink. "Who said your brain was damaged?"

"Er, the doctors?" Uncertainty had crept into my mind.

"The doctors… They're only words made up by other people. Sounds. Words that don't mean anything. You're not 'brain-damaged'. You don't have 'cerebral palsy'. Those words are vague attempts to try to define you. Your brain is your brain and you are perfectly you."

I let those ideas into my head one by one, each gingerly walking in with hesitant steps. The people and the chatter and the smoke around me faded away, and all I could see was Dylan. I fumbled for an answer in the new space I found myself in.

"But people think I'm different."

"The only opinion of you that matters is yours."

This hit me hard. For the first time, I hated myself for hating myself.

He spoke once more. "You are Francesca. Full stop."

That was the moment everything changed. And for the first time in my life, I fell hopelessly, recklessly, wondrously, painfully in love.

I hadn't realised that I could choose how to view myself. I hadn't even realised that, somewhere along the way, I had given that vital power away – the only power I possessed, and I had given it away without even knowing it. I never looked back.

Anyway, Dylan turned out to be an arsehole.

Early on in my standup career, I began to see just how reluctant television is to allow someone wobbly to appear as a comedian. My high-powered agent was trying hard to get me on to a BBC standup show but the producers were having none of it. They agreed that I had the right credentials, but were worried that the sight of me would send viewers into anaphylactic shock or something.

I am allowed to go on TV to speak about "serious" issues because that reflects my "serious" condition. But comedy shows are largely out of bounds. I was once told comedy panel shows are concerned I'll "make the audience nervous". Jimmy Carr tried for months to get me on 8 Out Of 10 Cats, but I'm still waiting. It's true that the comedy industry is a tough world for any performer to break into. But if you're wobbly, it seems to be more difficult. I've been dropped from a major award nomination list due to the head judge's contention that I was just a novelty act (despite not having seen my show). I was hoiked out of Lee Mack's sitcom pilot, perhaps because an executive thought my appearance in Extras fulfilled the palsy-on-screen quota for that decade, and I've been dropped from radio shows because of my "funny voice". Funnily enough, the telly-folk in other countries are far less concerned about unleashing me on the public. In Ireland and Australia I've been invited on the top comedy shows without a hint of knicker-twisting.

I should point out that I do get offered some comedy work in the UK. One of the funniest things that has happened to me was receiving an invitation, a few years back, to play a role in a one-off BBC4 comedy. I eagerly opened the script and read this description of my character:

CLAIRE IS SEVERELY DISABLED. SHE IS INCAPABLE OF ANY SPEECH, MOVEMENT OR EXPRESSION.

Well, I was, of course, flattered. After all, it's not every day I'm offered a major part in a TV show. After some consideration, I penned this reply:

Dear -----------

Many thanks for offering me the part of CLAIRE. Unfortunately, I do not feel I have the skill to bring off such a complex and demanding role successfully. I also fear that a week's rehearsal would not give me enough time to inhabit such a well-crafted portrayal of disability in the 21st century.

May I suggest casting a shoe or a carrot instead?

Yours sincerely,

Francesca

Despite the many advances we've made as a society, it seems we still assess someone's right to live on the basis of whether or not their bodies fit in with some arbitrary "ideal". Most parents-to-be still fear that their beloved newborn will turn out to be – oh, the horror – disabled. My personal fear is that my future child will turn out to be unhappy. I don't care what he or she can or can't do, how they talk or walk or how many fingers and toes they have. Because I don't think that is a good indicator of happiness. Forget aborting babies because of the suffering they might endure. What about the suffering they'll create? Wouldn't it make more sense to develop a test to check for the arms-dealer gene, the advertising-executive gene, the corporate-overlord gene, or the gossip-magazine-editor gene? That would eliminate quite a lot of suffering. Had my wobbliness been detected in the womb, my parents would probably have been advised, by a softly spoken but firm doctor, to have an abortion. To spare me (and them) a life of suffering. The concern is touching, but I think I'd rather take a punt on living.

• This is an edited extract from What The **** Is Normal? by Francesca Martinez, published by Virgin Books at £12.99. To order a copy for £9.99, with free UK mainland p&p, go to theguardian.com/bookshop or call 0330 333 6846.