When the disabled rights activist, academic and broadcaster Tom Shakespeare sat down to write a novel, he knew two things. He wanted to write a comical tale, a modern country-house farce. And the main character would be an ordinary paraplegic wheelchair user.
“Representations of disabled characters tend to be tragic but plucky, the Tiny Tim type figure, or very sinister and evil, like Richard III,” he says. “I wanted to write about an ordinary disabled character who, yes, uses a wheelchair. But most of the time, it’s not a big issue.”
As a professor of disability research at the London School of Hygiene & Tropical Medicine, he has written many academic papers and scholarly books about the politics of disability and disability rights. But a serious, literary novel about life with a disability was never on the cards for Shakespeare, 57, who also used to work as a standup comedian. “I love wonderful novels with deep transformations, tragedy and all of life in its terribleness. But I don’t think I can write those. I’m irredeemably focused on making people laugh,” he says.
He is also a huge fan of great comic British writers, such as PG Wodehouse, Douglas Adams and Terry Pratchett. “It made sense to emulate them, but with contemporary humour and disabled characters.”
Born with the genetic disorder achondroplasia, a common cause of dwarfism, Shakespeare became a wheelchair user himself at the age of 42 when his spinal cord suddenly compressed without warning. “Over three days, I became paralysed.”
He had assumed he already knew all about life with a disability: “I’ve been short all my life and I’ve studied it. So it was all known to me. And then I was suddenly in a wheelchair and I couldn’t move my legs It was like being disabled all over again. I spent eight weeks in rehabilitation, I had to learn how to use a wheelchair, I had to learn all about bowel and bladder movements and all the things that spinal cord-injured people need to know.”
It was very traumatic, he says, but there was one immediate benefit: “It was as if I became invisible,” he says. “Nobody stared at me. They were like, ‘Oh yeah, you’re in a wheelchair, it’s fine.’” This was a relief because growing up with achondroplasia he had always been made to feel he was different. “I’ve always been stared at. I’ve always been laughed at. There’s always been silly comments, which can be very injuring.”
At school, other children referred to him as “Blob”. “There were all sorts of quite cruel names, which other boys thought were funny.”
He was once harassed on the metro in Newcastle by a group of teenage girls. “They surrounded me and started abusing me, saying ‘You’re a short-arse, aren’t you?’ and ‘Why are you so short?’ It was very unpleasant – and when I got off, I was worried they’d follow me.”
Another time, on a train, he overheard people joking that there was a Mekon onboard: “A Mekon is a cartoon villain with a big head,” he explains. “They were referring to me.”
Travelling in lifts was tiresome, too, before he lost the use of his legs, for similar reasons. “When the doors open, you do not expect a very short guy to be standing there and most people couldn’t help themselves. They would say ‘Oh!’ in surprise.”
His desire to be funny arose out of this widespread – and often humiliating – reaction to his disability. “It’s tempting to make it into a joke, to go ‘Oh!’ yourself, and really play up to it.”
From a very young age, he decided that if people were going to laugh at him anyway, he would rather “make” them laugh than constantly being confronted with the suggestion that his appearance or his size was ridiculous. For example, at one point when he was studying for his doctorate in sociology at the University of Cambridge in the late 80s and early 90s, he was stopped on the street by two “young lads” and interrogated about whether he smoked. He told them he did and then went away and thought: “‘What the hell was that?’ And then I realised they had been told: ‘Don’t smoke – it will stunt your growth.’”
When, in 1991, he helped to set up the Northern Disability Arts Forum in Newcastle and began compering and working as a standup comedian, he decided to “reclaim the humour” of this experience. “I used to make a joke of it, that it was like I was a walking health promotion advert. I was evidence that smoking stunted your growth.”
He has always loved trying to make people laugh – either by “playing the fool” or by “being clever and getting people to find what I said or wrote funny”. He recalls feeling this way for the first time at school. “I was in a school play, wearing lots of makeup and I looked in the mirror and said: ‘My own mother wouldn’t recognise me.’ And everybody laughed at me because, of course, my mother would recognise me. I was the only short person in the play. But I had completely forgotten that.” The experience made him realise he could say things “perhaps next time, deliberately” to make people laugh. But, importantly, he decided that in the future, “I wanted them to laugh not at me, but with me.”
Shakespeare’s new novel The Ha-Ha, written with this aim in mind, stars Fred, a solicitor from Norwich who has been in a wheelchair since a car crash at the age of 22. Thanks to a lost manuscript, a stolen pig and psychedelic drugs, Fred’s whole life gets turned upside down on his 40th birthday – but his paraplegia does not define him, internally or externally, he is very much “just an ordinary bloke”. And this is Shakespeare’s key message in the book, which is aimed at both disabled and non-disabled readers: “I wanted people to see Fred living a normal life. He has a dog. He has emotional ups and downs. He has friends.”
He credits his “very short” father, a doctor who died in 1996, for showing him that you can lead an ordinary life as a disabled person. “He showed me you can be a doctor while being disabled. You can fit in while being disabled. You can be like everyone else.”
One in seven people are disabled, he points out, and as people get older, having a disability becomes more common. But Shakespeare himself is not, technically, a “very ordinary” disabled person – or even a commoner. His grandfather was Sir Geoffrey Shakespeare, a Liberal MP who served as a government minister during the Second World War and was made a baronet, so when his father died in 1996, Shakespeare inherited the baronetcy. “I don’t use the title ‘Sir’ because I haven’t earned it. But more than that, I don’t like any titles or inheritance. I believe everyone should be equal, in a radically democratic or republican sense. We are all equal human beings. You should be rewarded for your own achievements, yes, but not with titles before your name.”
In his main job as a professor, he researches disability issues, such as employment and health access in Africa and Bangladesh. “My colleagues do the numbers and I do the conversations.” Recently, for example, he explored “what success looks like for disabled people” in Zambia, Uganda and Kenya. “It wasn’t all athletes – it was also things like having a job or having children.”
He himself had two children by the age of 22 and he recently became a grandfather. Like most of the toddlers and young children he meets, his granddaughter Ruby loves whizzing about in his wheelchair. As a short person, he feels able to build an immediate rapport with small children, which he thinks would be impossible if he were tall and frightening. “Young children are actually very accepting.”
But he doesn’t want to give the impression he always finds being short easy. “My daughter is short, my son is short, my son-in-law is short and my granddaughter is short. If two of us are in a public place, people find that very interesting. If three of us are together, they think there must be a convention and if it’s four or five of us, it’s, ‘Oh, it must be the seven dwarves.’”
He wishes he didn’t have to overhear such comments and that people didn’t stare, even momentarily. “But it’s inevitable.” Which is why his general view, he says, is that “when life is shit, you have to laugh at it.”
The Ha-Ha by Tom Shakespeare is published by Farrago at £14.99. Buy it for £13.99 at guardianbookshop.com