The latest edition of the BBC documentary strand In My Own Words presents Alison Lapper’s story. As you might expect from this formidable woman, born without arms and with shortened legs, and abandoned by her mother to a children’s home, she tells it unsentimentally and unsparingly. Almost every word is like a hammer blow to your heart. She tells us that art is about expressing and evoking emotion, but even when we see her new exhibition going up, full of works about her son Parys, who died five years ago at 19, a true understanding of how she has borne all that she has, how she has found the strength to keep going remains elusive. Perhaps it must; perhaps it should. But she is extraordinary.
We begin with the event that brought her to public consciousness – when the sculpture Alison Lapper Pregnant by Marc Quinn was erected on the empty fourth plinth in Trafalgar Square. We watch with her footage of reactions from passersby. “What dumbo decided to put it here?” says one. “It’s not what Nelson would have wanted to look at,” says another, which is almost a laughter line. Another wonders if it’s good for people to look at “deformities.” This was less than 20 years ago.
When we go back to 1972 and a clip of a documentary about Chailey Heritage, where she lived from the age of six weeks until she was 17, the presenter explains that all the children – busily going about their business – are “so badly handicapped their care has to be constant, their will to carry on encouraged”. Fast forward to her first show in London, comprising photographs of her naked body in all its glorious difference, and you can find the gallery director explaining that her work is very good but “collectors taking things home want something pleasing, exciting, whatever … And if you’ve got an Alison Lapper up on your wall, you will have to justify it every day.” When her son entered the mental health system and was moved 20 times in the last two years of his life, the homes he was in frequently had no disabled access. Literally as well as metaphorically, she could hardly reach him.
But this portrait of systemic, deep and enduring prejudice, against which Lapper has fought and in which crucible she has been forged, is, terribly, the least of it. There are filmed interviews with her mother, who had a breakdown after Alison’s birth and did not see her again for four years, in which she explains that it would have been much better if her daughter had been adopted, “because then someone would have loved her, wouldn’t they? Obviously she’s not getting it off me.” “Out of the horse’s mouth,” says Lapper now. “How am I supposed to deal with that?” Possibly even more heartbreaking is when she recalls her mother criticising Parys’s “odd” name. “I thought: what can I do to make you proud?” she remembers. The young mother had believed that producing an able-bodied child would fix their relationship. The inadvertent insight into the depth of her longing and the internalisation of so much toxicity makes you flinch.
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And then there is the death of her beloved son, of a suspected accidental drug overdose after years of struggle with his mental health. We watch him being born, by caesarean section – every face in the room delighted. “I loved being pregnant,” says Lapper. “I felt so well, so healthy. It blows my mind that my body as it is, especially after being told it never would, created that perfect little being … I stupidly thought I could pave the way for other parents with disabilities. When he was in the world, I was a different person.” And then he left. She had fought hard to make people trust her with his care and his upbringing. She loved him as her mother had never loved her. “But all the doubting Thomases sort of won, didn’t they? Because he died.”
It is agony to watch. What it is truly like to live as Lapper at the moment, who is clearly only just beginning to be able to process her grief – creating a series of paintings to represent Parys’s own life and theirs together, now on display, along with the Quinn sculpture, at Worthing Museum and Art Gallery – is unimaginable. But her words and her works get us as close as we ever can. As to the rest: I suspect she would hope for us that we never know.