Desnudo de Frida Kahlo by Diego Rivera hangs in a small museum in Guanajuato, Mexico. In this portrait, Frida’s torso is taut and slim; the sides of her waist curve inward, creating perfect hollows for each of your hands. Her breasts are slightly lifted, because her arms are clasped behind her head; her elbows are the pointed tips of wings. Her shoulders look solid, strong, able. This is a body that is loved, admired, desired. This lithograph was made in 1930, after polio disfigured her right foot in 1913 when she was six years old; after the 1925 streetcar accident that broke her spinal column, her collarbone, her ribs, her pelvis, created 11 fractures in her already weakened leg, crushed her foot and left her shoulder permanently out of joint. During the 29 years between her accident and her death in 1954, Frida had 32 operations; was required to wear a corset every day from 1944 onward; and had her leg amputated because of gangrene in 1953. It was this final operation that likely led to the complications that eventually killed her. Speculation of suicide remains. As an artist, Frida is famous for translating her pain into art, but people rarely know the full details of what she endured. Many of her millions of admirers across the globe do not realise that she was an amputee during that last part of her life. Here, in Diego’s 1930 likeness, her legs are thickly muscled, almost masculine. As an amputee since the age of four I have always wondered what it would be like to have memories of two flesh-and-blood legs. I have always wanted someone to see me the way that Frida is seen in this lithograph. I long for a concrete, active memory of walking and running on two legs, looking at them, crossing them, spreading them. But the memory of life lived on two legs is unavailable to me. The desired body that I long for is a fiction. The first time I saw Frida’s painting The Two Fridas (Las Dos Fridas) I felt the impact in the skin between my real leg and my fabricated leg, that small, hardworking patch of flesh that touches what is connected during the day and disconnected at night. For so long I explained to people that it was like having two Emilys, living in two bodies – one for the day, one for the night – and when I saw The Two Fridas in an art book, I thought yes. I thought you see me. I thought this is true. It was 1991, and I was still in high school. I went to the library and found every book I could about Frida. Many of the books mentioned that Frida was debilitated by her pain; they talked about how much and how long she suffered. And yet, all these paintings, all this art, all this beauty. I knew that pain was not a muse, so what sustained her? The Two Fridas was not about suffering, it was about imagination and connection and that word my parents had started to use with me: self-love, which I was supposed to be practising and was not. I had no model; I knew no female bodies like my own. I learned later that The Two Fridas grew out of a relationship Frida developed in her mind with an imaginary friend when she was six years old, the year polio confined her to her bed. In a 1950 diary entry, she describes opening an imaginary door in her bedroom before descending to a deep place where her friend was waiting for her. I was 21 when I read this passage and I wanted that magical friendship to be mine and Frida’s, one in which I could share all the secrets of my body without shame or embarrassment. I chose to try to understand the story of her body as a way of accessing mine. She would be my guide. Lying in my narrow college dormitory bed, I read an excerpt every night, running my fingers over the glossy pages, mesmerised by the wit and intelligence and vulnerability she expressed. I began talking and writing to her in my waking hours; and in my dreams I was the imaginary girl waiting at the bottom of that magical portal she described. And when she arrived, I said I’m real. I need you. Tell me everything. My obsession with Frida continued in graduate school, when I first began writing about my body instead of pretending it didn’t exist or could be forever covered up. Reading biographies and fictionalised accounts of Frida’s life I rationed every word. Mexico, December 2013: I find myself in the Casa Azul, the sprawling Mexico City residence Frida shared with her great love, Diego Rivera, now a beautifully curated and wildly popular museum. I’m strolling through it wearing maternity jeans and running sneakers. I feel weighted and tired. My baby girl is due in three months. People walk past me on their two legs. They stare. I want to strip off my clothes and make them look at my body instead of just staring at it; to examine it with tenderness the way Diego examined and drew Frida before she lost her leg. My daughter has already been named Charlotte, and her nickname will be Charlie. My first child, my son Ronan, has been dead for almost a year. Gazing at the narrow bed where Frida lay when she was laid up, with its crisp linen bedding, the photograph of a dead child wearing a crown of roses above the plain wooden headboard, I remember. My son’s nursery had pink walls. There was a rocking chair in the corner, near the window. His father and I, even after we split, cared for him equally until his death. We read to him in this room, changed him, rocked him, cried into his soft dome of hair; he spent most of his life inside those four walls with the blackout curtain always pulled to block the light that would hurt his sensitive eyes. When he died and his body was taken away, I closed the door on that room and never opened it again. My parents unsealed it, unpacked it, dismantled the furniture. I kept the pieces of his crib; I will haul them around to every house I live in until the day I die. When I enter the glass room at the Casa Azul where Frida kept her corsets, special shoes and prosthetic legs, I feel as though I am entering a sacred space. It is disorienting to see Frida’s legs like this – the fringed red boot with one side stacked higher than the other to compensate for the post-polio asymmetry; the fleur de lis corset with its silky border covered with colourful birds and animals; the casts painted with the hammer and sickle of the USSR; the brace with the gaping hole to represent the lost children; the artificial limb the colour of palm bark; with a swoosh of blue and a tiny bell; a seamed place for the knee to buckle and bend. She was playful with her pain; she adorned it, advertised it. These items from her collection start to feel like a debt that’s been collected from a dead body; a graverobber’s stolen objects. She has been elevated to the status of saint, and people covet parts of her the way they once did a lock of hair or a half-moon of clipped toenail from a saint’s body, living or dead. As if a part of a different body might make the stranger who held it suddenly whole or save them somehow. Is that what we want from Frida? I kept a lock of my son’s hair in a locket for two years; but wearing it only called attention to his absence and I finally buried it at the top of a wind-swept mesa and felt a vivid relief. I want to talk to Frida about suffering, about Tay-Sachs disease, the disease that killed my son. I want to tell her that, after he was born, he was immediately turned around to his death – the distance between the two so brief, like a thin, short thread quickly snipped. I feel she would understand. I feel she would let the story live on inside her without feeling sorry for me, and without expecting me to ever recover from it. Frida lost several children, either through miscarriage or surgical abortion; her bone grafts became infected, her kidneys inflamed; her hands covered in fungus; her appendix removed. Still, she painted. As I look at her legs, I think of the one I am wearing, how hard I’m working – as always – to stay inside it, even though it’s been my favourite leg since 1998, when the first version was made. Since then I have been fitted with three new Flex Feet; countless silicone sockets that become grimy and smelly from sweat and wear; and three brand-new knees. The flesh-coloured “skin” has been repainted twice. Now, the structure of the leg itself is starting to unravel. Perhaps this is how prosthetics age; like Frida’s crutches and feet and corsets, there are visible stains: a light red stain might be blood. Months after I visited the Casa Azul, at my daughter’s first new-born check-up, the paediatrician will ask me if my leg is something my daughter might inherit, the way my son inherited the genetic disease that killed him. “Not unless she’s buried with it,” I say, and think of the bright pop of red in Frida’s artful, artificial shoe, the ragged edges of her corsets, the stained straps and fraying laces. This memory of colour and texture is what keeps me from standing up and slapping him. Frida’s leg was made in New York City in the 1950s; mine was made in Denver in the 1980s. The prosthetist’s office was on the nondescript corner of a rundown block in a sketchy neighbourhood, the floors dirty and coated in dust, the rickety wooden side tables in the waiting room littered with old magazines. As an adult I would look back and think of this office as a place where objects of shame were manufactured; machines for the incompletes, the outcasts, the abnormal. As a child, however, I filled that dusty space with my chatter and curiosity. “What kind of leg do you have?” I liked to ask the other amputees, mostly war veterans, who seemed to me ancient and slightly edgy, with their smell of cigarette smoke and sleeve tattoos. During one long, hot day of summer adjustments in the Denver office just before I entered puberty, I hopped to the back room to have a look at what my prosthetist was doing with my leg. A saw descended from the ceiling, spinning angrily; flecks of wood flew like sparks and floated through the air. A cigarette hung from his lips. He cursed at the leg, tugged at it. I ached for the leg. I hated it. I wanted it to be chewed up, incinerated, or disposed of once and for all. I hated myself. I was a monster, I thought, and felt monstrous as a result. When I became a mother, my relationship to the body changed. Different kinds of internal machines – all mysterious organs and natural processes – had been activated inside me, and everything worked perfectly. I made a beautiful boy, perfectly, it seemed. But at nine months old he was diagnosed with a terminal illness – a progressive neurological disease – that would claim his life before the age of three. At first, I irrationally blamed my hybrid body with its leg machine for what was happening to my son. How dare I think I might actually manage to build something perfect in this body that had to be helped along by expensive, artificial parts. But as my son’s condition worsened, I developed a more nuanced relationship not only with my leg – which seemed an easy problem compared with his ailments – but with the machines that also contributed, for a brief time, to his wellbeing and quality of life. Because Ronan had trouble swallowing and sometimes breathing, he used a suction machine and an oxygen machine. At the end of his life he used a nose tube that distributed pain medication. Nothing about his body was easy and, suddenly, all the mechanical parts of my brain that worked together to enable me to speak, walk, type, move, shout, eat seemed miraculous. London, autumn 2018: I go to the Victoria and Albert Museum to see Making Herself Up, an exhibition offering “a fresh perspective on Frida Kahlo’s life through her most intimate personal belongings”. They come out in droves to see her prosthetics and orthopaedic devices and her clothes: school groups in their uniforms, looking bored; sunburned German tourists, one wearing a mask of Donald Trump’s face; a woman in a black burqa and black sneakers. I am nervous going in, although I know what to expect: Frida’s legs and casts; the corsets that held up the bones of her back; some of her best and most photographed articles of clothing that make up her quintessential “look”. I am with my friend Emily, my mum and Charlie. “You’ve dressed like her,” Em says. Indeed, I have deliberately dressed like Frida, or perhaps in homage to her. It would be ridiculous for an American woman to wear a Tehuana dress, but I have disguised myself in my way: a denim vintage dress with a ruffle on the hem; mid-calf 80s white go-go boots; gold jewellery draped and layered around the neck and across the chest; dark lipstick; a single braid. “This is my confident get-up,” I say. The rooms are heaving with people. Walking slowly is the hardest kind of movement for me, and makes me limp noticeably. I notice people’s stares. I’m feeling impatient to see the legs and the corsets and the boots when I stumble into the man in front of me. We exchange awkward apologies, then he steps away to reveal a photograph of Frida I have never seen. I feel like someone has punched me in the chest. I’m on the edge of tears. Frida is in traction in the photo, which is taken from the side, so you can see that her head is suspended in air, held up and back by the pulley system behind her. Her amputated leg is raised up in a white cast and her hair is long and dark and flowing over the white hospital gown. I am flooded with the memory of how it feels to be held like that, in suspense, literally, and how painful and awkward it is. In this photograph, Frida is painting. There is a sketchpad in her lap, and a brush in her hand. This is what makes me want to weep. She makes as pain unmakes her. And she has just lost her leg. I am overcome with compassion for her – not pity – and compassion for myself, which is hard to come by. To my right, encased in glass, are the corsets that propped up the bones in her back after the accident, and for the rest of her life. My own back brace, which I wore briefly after my amputation, was made of the same moulded plaster. The straps hanging from the corsets behind smudge-free glass resemble the straps I remember washing in the sink with bleach, spraying with rose-scented body splash to try to mask the terrible odour, which only made it worse. Frida’s amputation was in 1953; mine was in 1978. Frida died on 13 July 1954; I was born 20 years later, almost to the day, on 12 July 1974. And yet our legs could have been made by the same man. I hear a conversation between two women behind me: “It’s so sad, so tragic.” “Yes, but it made her an artist. All that pain.” “Mmmmmm.” “Poor Frida.” I limp away, desperate to yell at these two middle-aged women who are having a lovely afternoon at the V&A. I do not. But they are wrong. I do not believe that suffering was Frida’s main characteristic, because suffering does not create art, people do. Frida’s life was wholly vivid, saturated with all the things that make a life a life: knowledge of suffering; love; sex; friendship; home; travel; laughter; anger and joy; the creation of art. “It’s just so sad,” says another viewer to her companion. “She could have had such an amazing life.” They have, I think, totally missed the power of this exhibition. They have looked without really seeing Frida’s legs, her winged feet, her corset decorated and shining. This was not the art of inspired sentiment. It is the art of survival. Two years later, I am at the school gates. My daughter, five years old – ginger hair, freckled nose, pale skin and all energy and fire – sprints across the playground. “Mummy” she shouts. A little friend runs next to her; they are breathless with excitement. “I was telling her about your leggie,” Charlie says, panting. “How you have one that’s special. She didn’t believe me. Tell her it’s true!” The other girl looks me up and down, so curious, so sweet. “That’s right, sweetie,” I say, “I do have a leggie!” “Told you!” Charlie says triumphantly to the little girl, who simply says, “Wow,” when I pull up the bottom of my jeans to show her the different coloured skin. “It makes my mummy who she is,” Charlie says, and then, just like that, the two girls take off, hand in hand, Her comment stuns me, and also opens up a feeling that I began to have in the V&A in London. It was only after we visited the museum that Charlie began asking questions about my leg, and it was then I could use Frida’s story as a way to understand my own enough to tell her. This has perhaps made my child unafraid to ask other questions. Charlie knows about her brother who died (and she doesn’t say “passed on”, she says “died”); she knows about Mummy’s leg that was lost. This is Frida’s gift: to acquaint us with our own losses in a way that refuses to hide the truth of them. My body is, and always will be, part mechanical machine. This fact is a burden, a gift, a risk, and a reality. Like all of us who live and breathe and function in our bodies, composed of so many disparate parts and processes: we are all part of the chaos and unpredictability that is creation, reinvention and change What can all of us learn from Frida, no matter our embodiment? This: love and bodies come apart. Also, this: art remains. This is an edited extract from Frida Kahlo and My Left Leg by Emily Rapp Black (Notting Hill Editions, £14.99). To support the Guardian order your copy at guardianbookshop.com. Delivery charges may apply Emily Rapp Black Q&A: ‘I still have people clap at me when I’m on the treadmill’ Emily Rapp Black is an American writer whose work has appeared in Vogue, the New York Times, the Wall Street Journal, Time and many other publications. At the age of four, her left leg was amputated due to a congenital birth defect. When her son, Ronan, was nine months old, he was diagnosed with Tay-Sachs disease and she was told he would not live beyond the age of three. Over the next two years her marriage imploded and Ronan died just before his third birthday. Rapp Black has chronicled her life in several memoirs: 2007’s Poster Child; 2013’s The Still Point of the Turning World; Sanctuary, published in the US this year, which looks at what it means to survive; and now Frida Kahlo and My Left Leg. She has a partner and a six-year-old daughter, Charlie. How did being an amputee colour your childhood? Financially, for the most part, or it affected my parents that way. Health insurance in the US is notoriously crap, and even more so when it comes to providing those with non-normative bodies the devices they need to function and thrive. What would you say to the six-year-old you who was chosen as a poster child for a charity working to prevent birth defects? Don’t do that. You’re great the way you are. Someday you’ll see models with bodies like yours. This will only make you sad later. How have people’s responses to you as a woman with a prosthetic limb changed over time? Sadly, not so much. I still have people clap at me when I’m on the treadmill, and many people assume that I’ve never been on a date or been sexually active. Is there more awareness of ableism today? Yes and no. I think the body positivity movement has helped in some way, at least in the US, but we still hear phrases like “crippling economic disaster” and “I was paralysed with fright”, and “that’s so lame”. Using people’s lived experience as a metaphor – and in a negative context – is still commonplace. Plus: Trump didn’t help –anything, really, but he openly mocked a person with a disability on a crowded stage, thereby adding one more strike to his status as Most Horrible American President Ever. You seem to have had more than your fair share of suffering, yet you’re on record as not liking to be called brave. Why? Brave implies a choice. I didn’t choose suffering, and neither does anyone else. I figured out how to keep going, because that’s what people do. Brave is an onlooker’s way of distancing, ie, if I put you on a pedestal as extraordinary, and say I could never go through what you went through, then nothing bad will happen to me. Wrong. When your son was diagnosed with a terminal illness you began writing your memoir about him the same day. What drove you? A desire to create in the face of death. It was the only thing in my life that wasn’t saturated with sadness and despair. In your book you describe Frida Kahlo’s art as “the art of survival”. Does writing serve a similar purpose for you? It did when my son was living and dying of a hideous disease. I write for privacy; that may sound odd, but when you have experienced things that people want to label as “tragic” then you’re immediately put into a box. A narrative says, “This is what it was like for me,” which of course is only part of the story. The rest of it is mine, and mine alone. Interview by Lisa O’Kelly