My wheelchair warrior dad: Film producer tells how his father became the first person paralysed by polio to live outside hospital and inspired his new movie Breathe

Travelling with my father, Robin Cavendish, was not straightforward. He had contracted polio in 1958, just before I was born, and was completely paralysed from the neck down.

He was entirely dependent on a breathing machine fitted to a wheelchair, built by his great friend and Oxford professor Teddy Hall, which pumped air into his lungs. 

Dad had also supervised the design of a Dormobile van with a hydraulic lift, so he could travel. He decided he wanted to see the sun set over the Mediterranean, so off we went to Spain. I was seven and it was my first holiday abroad.

Disaster struck just outside Barcelona. My uncle Bloggs (named after Henry Blogg, the most decorated lifeboat man in RNLI history), my mother’s brother and not the most practical of men, plugged a cable for Dad’s breathing machine into the wrong socket. There was a loud explosion, flames and smoke, and both van and breathing machine ground to a halt.

Andrew Garfield as Robin and Claire Foy as wife Diana in the film

Andrew Garfield as Robin and Claire Foy as wife Diana in the film

Two minutes without air and my father would be dead. My mother swiftly attached a pump to his tracheotomy and we took it in turns to pump by hand. The only answer was for Teddy to build a new breathing machine back home, fly with it to Barcelona and take a taxi to meet us. We had been hand-pumping for over 36 hours, so we were very glad to see him.

With the new machine fitted, we finally arrived at the Spanish seaside. It all seemed quite normal to me then, but I now realise it wasn’t normal at all.

I am a film producer, always looking for stories, but it took me a long time to work out that I had a great one under my nose. If I had been a writer, I might have penned a memoir or a novel. But making a movie about my parents’ life seemed too risky – what if I didn’t get it right?

But the more I thought about their story, the more I realised how remarkable my parents were. Their’s was a great love story which created the victory of optimism over despair. My father had lost control of his life, along with his movement and independence, but with my mother’s love and willpower, he was released from his captivity and enabled so many severely disabled people to escape in the same way. We all need films that give us hope.

The story starts in 1956 when Robin Cavendish meets a beautiful woman called Diana. They fall in love, have a whirlwind courtship of just six weeks, marry and go off to Kenya to begin a new and adventurous life. Two years into their fairytale marriage, however, everything changed.

My mother was just 24 and pregnant with me in 1958 when my father took a tumble during a tennis match. He woke that night with a sore arm and soon realised the rest of his body was rapidly losing sensation. Hour by hour he felt the paralysis creeping up his body, first losing the use of his feet, then legs and arms until he could not move at all.

He was rushed to a hospital in Nairobi where he was diagnosed with polio, which resulted in total paralysis. Doctors performed a tracheotomy to help him breathe. My parents were in shock, unable to grasp the enormity and finality of what had happened. Dad was just 28. He wasn’t expected to survive, and was flown back to England in an Army transport plane.

In hospital in Oxford, having to re-learn to speak, he begged doctors and visitors to turn off his mechanical ventilator and end his torment.

Pioneer: Jonathan with his father in the 60s

Pioneer: Jonathan with his father in the 60s

I was born a few months after he fell ill. In a moving moment in the film, his newborn baby (me) is placed next to his cheek. I can’t imagine the pain he must have felt at not being able to cradle his son.

Dad suffered extreme depression for two years. He would not look at me when I was brought in to visit him in hospital. But Mum steadfastly refused to give up. She told him he had to live to see his son grow up.

I believe it was purely his love for us both that pulled him through. And it was a love that was unconditionally reciprocated.

No-one like him had ever lived outside hospital 

She willed Dad to turn himself around, to contemplate and ultimately accept his terrible restrictions, and to start living again. Her optimism seemed unfounded.

By this time it was 1961 and nobody with Dad’s degree of disability had ever lived outside hospital before. Many polio victims – but not Dad – were kept alive on special wards equipped with rows of ‘iron lungs’, mechanical respirators imprisoning the entire body right up to the neck. It was unheard of for anyone to question this but my father asked doctors: ‘Why do you keep your disabled people in prison? We should open the gates and set them free.’

Mum bought a dilapidated house outside Oxford, and against very strong opposition from the doctors, they broke out of hospital.

Actors Claire Foy and Andrew Garfield attend the New York special screening of Breathe

Actors Claire Foy and Andrew Garfield attend the New York special screening of Breathe

My mother, helped by a junior doctor and a nurse, had to swiftly wheel my father on a gurney through the dark basement corridors of the hospital in a failed attempt to evade detection.

Mum, now a sprightly 83, still remembers their furious consultant shouting after them: ‘You’ll be dead in two weeks!’

They carried on regardless.

And so my parents had to invent a new way of living. Friends flocked to help.

Teddy Hall was a charismatic, eccentric inventor, whose personal wealth (his grandfather discovered the world’s largest lump of gold in Australia) funded the early-stage development of the ‘Cavendish’ wheelchair. Three versions were built and paid for by Teddy with my father urging him on to make further improvements.

Once they had a reliable and comfortable Mark III, my parents raised money from rich individuals and institutions to enable many chairs to be produced. They would transform lives, giving independence to countless respirator-dependent people all over Britain.

Beloved Tid, who had been my mother’s nanny when she was a child, came to live with us to help look after Dad and me. It took several hours in the morning to wash Dad, give him breakfast and a bed-pan, and hoist him out of bed into his especially adapted wheelchair.

Apart from his total reliance on his breathing machine, Dad’s main enemy was boredom. He always had new plans – travel, helping other disabled people, filling the house with friends. As my father said, he didn’t want to just survive – he wanted to truly live.

My childhood was very happy: my father was always at home and always wanted to do things with me. He never showed the frustration he must have felt at not being able to hug me or play football with me.

His chair was always surrounded by pretty girls 

My parents made it all look so easy and fun, when of course it must often have been exhausting, repetitive and sometimes frightening. I never saw that. To me our lives were an exciting adventure.

Mum has always said that it was easier for them because they had some money, given by my maternal grandparents for her wedding dowry. I looked into this while researching the film. My parents returned from Kenya to England with £25,000 – a sizeable sum then.

Their house cost £7,000, leaving £18,000. Dad could not go out to work and Mum was a full-time carer. Knowing the money would run out, Dad started reading the Financial Times and investing on the Stock Exchange, following the precepts of the great Warren Buffet. These investments grew modestly but steadily and funded a thriftily managed household.

When my parents were alone, they lived very frugally but when friends came round the hospitality was lavish and corks popped. Dad was very much the head of the household, making all the major domestic decisions, which is exactly how my mother liked it.

He realised that people then were scared of severe disability because they had never encountered it. He became adept at helping people through the awkward moment when they futilely reached out their hand to shake his. He was charming, funny and full of gossip – much of it mischievous.

His wheelchair was always surrounded by the prettiest girls at parties. My parents were never the object of pity.

I wanted Breathe to be truthful to my parents’ story, to capture the spirited fun and resilience of their love for one another while modestly and quietly, through their brave example, helping to change the lives of so many other disabled people.

I commissioned Oscar-nominated writer William Nicholson to write the screenplay. I’d seen his wonderful play Shadowlands in which he conveyed the tone of restrained but powerful emotion that I was looking for.

Andy Serkis, best-known for playing Gollum in The Lord of the Rings, came on board as director. He knew the world of disability as his sister Kath is a wheelchair-bound MS sufferer.

The moment I met Andrew Garfield, I knew he was the man to play my father and, bit by bit, he became my father. A few weeks before filming started, I was shocked to receive a phone message from Dad, 22 years after his death. The message ended: ‘How am I doing with the voice?’

He begged doctors to switch off the ventilator 

Remarkably, Andrew would stay in character throughout the day, motionless in his wheelchair, and, when he wrinkled his nose with an itch, my ‘mother’ Claire Foy – known for playing the Queen in The Crown – would come over and scratch it for him, just as my mother used to for Dad.

There were, of course, the usual difficulties along the way: my two- year-old self was supposed to pull the plug out of my father’s breathing machine, as I had once done. We could not get our two-year-old actor to do it, and, just as we were despairing, our dog actor Pixie – playing my dog Benjy – got tangled in the cord and pulled it out on camera.

My father didn’t just transform his own life but, with my mother’s unstinting love and support, he battled to revolutionise the lives of severely disabled people in the UK and all over Europe. He was awarded the MBE in 1975 for his services to the disabled.

I especially wanted to convey the fun and joy it is possible to create, even in a life so blighted, when the protagonists share a great love, willpower and the ability to laugh disaster in the face. In all those years, I only ever saw Mum cry once – when her highly eccentric mother gave her a kettle for Christmas two years running.

We have watched audiences from several countries laugh and cry at Breathe. But the most important audience member was always going to be my mother.

When she watched the final version, she was amazed and loved it, shedding rare tears. She loves Claire’s performance and cannot believe that Andrew so uncannily brought Dad back in every detail and every breath. My only regret is that Dad, who died in 1994 aged 64, never saw the film. I think he would have enjoyed it.

Breathe opens in cinemas next weekend. 

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