Riva Lehrer is an artist. Riva Lehrer is a Jewish artist. Riva Lehrer is a disabled Jewish artist, and a professor. And now she is the author of an extraordinary memoir, Golem Girl, in which she charts with great humour and intimacy her life story, growing up in America with the spina bifida condition.

She is not one for pussyfooting, Lehrer. She describes herself and other members of her disabled art collective as “crips”, adding that in Britain people like her are known dismissively as “biffies”. Are they? Almost certainly, most able-bodied people are unaware of such terminology.

But throughout this powerful book — which took her six and a half years to write — Lehrer draws the reader in, giving the sense of what it is like to be on the margins of society, and having metaphorically to shriek to get the mainstream to pay attention. Assumptions are made that the physically disabled are intellectually challenged, too: at one point, Lehrer tells me, despite the huge number of invasive operations she has undergone, on her frequent trips to hospital she is reduced to placing signs over her bed, reading: “You cannot do this thing, or I will die”.

Few of us, I would bet, become so familiar with our bodies for such painful reasons. But Lehrer, speaking to the JC from her Chicago home this week, has quite literally drawn on her own experience to become an incredible artist, using her knowledge of anatomy and medical conditions to catch her subjects, almost as though they are in the room with the reader. There are examples of her stunning work scattered throughout the book.

Lehrer was born in 1958 to an unassuming Jewish couple in Cincinnati, Ohio, Carole and Jerry Lehrer. She was the eldest of three: close to her next brother, Doug, slightly less so to her younger brother, Mark, with a six-year age difference.

I say “unassuming”, but Carole Lehrer was a powerhouse, a termagant when it came to protecting her daughter. In the late 50s and early 60s spina bifida children were not expected to survive. Carole Lehrer, however, had the advantage of having worked as a medical researcher at Cincinnati Children’s Hospital. Not only did she know about the condition — spina bifida, Lehrer explains, means “split spine” — but she understood that to give her baby any chance of life, there would have to be an immediate operation.

It was to be the first of many surgical procedures on Lehrer: leg lengthening, back straightening, even a hysterectomy. Some of the operations were successful, others less so. But just to be on the safe side, Carole and Jerry named their daughter Riva Beth Joan, or “Riva Brina Yocheved”, a collection of names deliberately to confuse the Angel of Death. As Lehrer writes: “In Jewish folklore, the Angel of Death is rather stupid. He wanders the world with his clipboard and paperwork, seeking his victims by name. If a baby is born with an illness, you give it multiple names. This confuses the angel, who scratches his flaming skin and says ‘Who is this? Riva? Brina? I don’t know. Guess I’ll come back later’”.

And, in case there is any doubt about the book’s title, Lehrer gives it to us straight. A golem, she tells us, is an amorphous mass, a seminal figure in Jewish lore, created by man to serve a specific purpose. “Every tale tells us: it is in the nature of a golem to wake up. To search for the path from being an It to being an I.”

Riva Lehrer’s transformation from It to I began with the ferocious attitude of her mother. “You have to understand,” she says, “that there weren’t models for how to have a kid like me. In the 50s and 60s there were surgical breakthroughs — but there weren’t a lot of disabled people out in public having normal adult lives, certainly very few that my mother could use as a guide for how to raise a disabled kid.” As she dryly observes, “The Miracle Worker [Helen Keller’s story of her deaf and blind childhood] is not exactly a guide for parenting”.

Instead, as Lehrer reminds the reader, the inclination was to place severely disabled children in institutions, where too often they remained for the rest of their lives.

“I have to hand it to my mother”, Lehrer says now. “She was over-protective, but understandably so”. In fact, as well as mothering Lehrer and dealing with the many issues of a spina bifida child, taking care of her husband and her two active and boisterous sons, Carole Lehrer had her own acute medical issues, dating from a fall in the snow in 1962.

As Lehrer recounts bitterly in the book, Carole’s first operation after the fall was conducted by a leading member of Cincinnati’s “medical royalty”, Dr James Litvak. It was said to be a privilege to be operated on by this surgeon. However, Lehrer writes: “At the end of this operation, Dr Litvak reversed out of her body like a man driving down a dark road backwards… he didn’t see what he’d left behind”.

In fact, he had left surgical sponges in Carole’s spine, and grim years of pain and revolving door visits to hospital for further operations followed. The family finally filed a malpractice suit against Dr Litvak, (who is now dead), leading to an almost blanket blacklisting of Carole as a patient by other specialists in the city.

Eventually, in an episode of black comedy that makes the reader gasp, the Lehrers succeeded in finding one orthopaedic specialist who was ready to testify on Carole’s behalf in court. “Dr Gray was shocked and sympathetic and promised he’d explain everything a jury needed to know”. The entire family gathered boxes of Carole’s medical records and gave the collection to Dr Gray, including “half a ton of x-rays”.

Two weeks before the court case, however, there was bad news. “Dr Gray had absconded with all of Mom’s medical records. Every single box and file and x-ray was gone. Every last scrap of evidence. Dr Gray had also absconded from his marriage and fled to Florida with his nurse…”

Meanwhile, for Riva Lehrer, there was school. Not just any school, but the Condon School, whose entire student body was disabled. It was not the kind of school anyone wanted to admit to attending as other kids were apt to call one names. And, as Lehrer recounts, it wasn’t just the kids who were capable of appalling behaviour.

One substitute teacher, Miss Boyd, harangued the pupils with a tirade of saliva-flecked invective: “I bet none of you ever been told why you’re the way you are… It’s because each and every single one of you is the wages of sin. Your mama and your daddy were drinkers and smokers and thieves, I know this for the Lord Jesus’s truth”. Lehrer and her friend Julie ran out of the classroom full of crying pupils, to report her verbal attack, and Miss Boyd was, fortunately, never seen again. Carole Lehrer’s response was hilarious — but deeply politically incorrect.

Once out of school, however, Lehrer understood that there was a problem. Condon students were not expected to make their way in the world and she began to realise though she had nominally received a mainstream education, in fact academically she was several years behind. It took her a long time to catch up.

In her book, Lehrer describes how she chooses who to paint. “I don’t take commissions”, she tells me. Instead, her practice is to approach people, disabled and able-bodied, in whose work she is interested. She invites them to her home studio and works with them for a time and then leaves the apartment for an hour or so, giving them free rein to do what they will while she is gone. She asks her subjects not to abuse this privilege; I ask her if, for example, she would be ready to paint Jeremy Corbyn and allow him the run of her apartment, to which the reply is peals of laughter.

For Lehrer, “being Jewish is so engrained in how I see things”, not least her sense of charity and humour. She marks the festivals, and “growing up in neighbourhoods where there were many Holocaust survivors,” she says, she could not fail to be aware of Jewish issues, and has “made my politics to people who are more vulnerable pretty intense”.

She finds it difficult to pull apart her layers of identity as an artist, a Jew, a disabled person, and someone who has explored different aspects of her sexuality.

But there is also a clear mission on her part to fight for disabled people’s rights to be heard on their own terms, and not to be ignored because they don’t conform to society’s idea of “normal”. I ask her if she hopes Golem Girl will change attitudes, and she holds up her hands, fingers firmly crossed.

Golem Girl is published by Virago (£20)