Frida Kahlo and Her: Author Shares A High Profile Life of Invisible Disability
Being the poster child for a movement or a cause is usually a metaphor, meaning that you embody the mission of an organization. For award-winning author, educator and disabilities justice advocate Emily Rapp Black, it was literally who she was.
In 1980, at six years old Black was chosen as the poster child for the March of Dimes, because a congenital birth defect resulted in her left leg being amputated. Her latest book, the critically acclaimed, Frida Kahlo and My Left Leg, explores Black’s ideological connection with the iconic Mexican artist who suffered from polio as a child, and later a leg amputation, using a prosthetic limb.
“I grew up in rural Wyoming,” says Black, “and the only person in town with an artificial leg who was not a veteran was me.”
A successful bestselling author, and assistant professor at the University of California-Riverside School of Medicine, Black says in the late 1970s amputation was offered as the “best chance for a normal life.”
As an athlete, runner, downhill skier and now Peloton enthusiast, she says, “I live with a body that isn’t the same as the one in my head.”
The daughter of a Lutheran pastor, Black attended St. Olaf College and did a year abroad in Dublin. “They were the best and most formative years of my life,” she says. “I was 19, living on my own; I had never been out of the country.”
After graduating in 1996, she traveled to Korea as a Fulbright Fellowship recipient. And the following year she traveled to Namibia, Hong Kong, Thailand and Switzerland, working for a relief organization, The Women’s Desk of the Lutheran World Federation. “I was coming to terms with my disability,” says Black, whose first memoir Poster Child, was published in 2007.
In 1998, she set off to earn her masters in theological studies, intending to be a theology professor, studying at Harvard University’s Divinity School, earning her degree in 2000. She had decided while she was there that writing was what she really wanted to do and headed to University of Texas-Austin in 2001 for her masters of fine arts in creative writing.
Awarded writing residencies and earning accolades for her work, Black taught nonfiction at Antioch University from 2006-2010.
“I think I see memoir as an act of service to people,” she says. “I do believe in catharsis; you put a frame around the chaos, and in my case I put words around it. It gave me a sense of not feeling as lonely.”
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Her son, Ronan Christopher Louis was born in 2010 and diagnosed with Tay-Sachs disease at nine months old; he died before he was three. Black writes of her experience in the 2013 book, The Still Point Of The Turning World. In her 2021 memoir, Sanctuary, she writes of her life after her son’s death.
Her latest book was born of a lifelong fascination with world-renowned artist Frida Kahlo. Visiting an exhibit of Kahlo’s work, she says, “I was looking at the paintings and was obsessed. I had never seen myself mirrored.”
Kahlo, Black says, is one of the most important and influential artists in the modern world. “There are socks with her picture on it,” she says. “That is because she did something that resonates with people and she was paving a way for a lot of different women.”
She adds, “I visited the place where she lived with artist Diego Rivera, and there was an exhibition of her artificial feet. I had a moment of overwhelm. I had never seen these things.”
She thought she would write an essay on it, and that became this latest book.
“Things have changed a lot since the Americans with Disabilities Act,” Black says. “Access was never an issue for me, it’s just ableism.”
That is represented in common phrases such as being “paralyzed with fear,” “that’s so lame, “crippling blow,” and “turn a blind eye.”
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The BBC reports, “This kind of ‘ableist’ language is omnipresent in conversation: making a ‘dumb’ choice, turning a ‘blind eye’ to a problem, acting ‘crazy’, calling a boss ‘psychopathic’, having a ‘bipolar’ day. And, for the most part, people who utter these phrases aren’t intending to hurt anyone – more commonly, they don’t have any idea they’re engaging in anything hurtful at all.”
Author Sara Nović continues, “Disabled people experience widespread discrimination at nearly every level of society. This phenomenon, known as 'ableism' – discrimination based on disability – can take on various forms. Personal ableism might look like name-calling, or committing violence against a disabled person, while systemic ableism refers to the inequity disabled people experience as a result of laws and policy.”
According to the Centers for Disease Control, 61 million adults in America have a disability, including one in four women.
“Human Resources departments still often force disabled employees to justify themselves far beyond necessity in order to get simple workplace accommodations. And both supervisors and fellow employees in all kinds of workplaces still think it’s harmless fun to joke publicly about disabled employees’ disability-related quirks and characteristics,” Forbes reports.
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Black says she experiences ableism regularly. “People clap for me in the coffee shop; it’s a condescension, fear, revulsion, but it’s identity shaping. The truth is we all have a disability if we live long enough.”
The upside is there is a new movement of awareness and body positivity for those who are in wheelchairs, for instance, she says. “A lot of that has happened as a result of social media.”
For herself, as someone who wears an artificial leg, she doesn’t ask for a ramp and doesn’t require accommodations in the workplace. Seeing how Kahlo presented herself in the world as a woman with a hidden disability was fascinating, Black says.
“I really liked thinking about this idea,” Black says. “It’s my favorite of my books because it is less about me and more about Frida Kahlo. I was communing with someone across time and history.”
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“The leg is the cover of my book,” Black says. “It is a beautiful piece of art. She didn’t show this, she was secretive about her differences.”
In 2019, the Brooklyn Museum launched the exhibit, “Frida Kahlo: Appearances Can Be Deceiving” that “contains a dizzying 350 objects, of which only 11 are paintings. The rest are photographs, jewelry, decor and lots of clothes, many of the objects recovered from Kahlo and Rivera’s home in 2004, 50 years after her death,” the New York Post reports.
“When you have something with your body, the way you present yourself is important. She kept that to herself and didn’t show those to people. That resonates with me,” says Black, a prolific, award-winning essayist whose works have appeared in New York Times, Los Angeles Times, Salon, Texas Observer and The Rumpus.
Married with two children, Black is teaching writing and medical narrative at University of California-Riverside and is putting together a collection of essays for her next book. She also wants to write plays, novels and short stories.
“I think I’m done writing about myself,” Black says. “But I think the thing you want least to talk about is the thing you should write about. The thing that scares us the most has the most power to transform.”
Black’s advice to women who want to share their stories and speak out about their lives is simple and straightforward. “It’s about not being afraid to show things about you that are uncommon. Do not hide your disability, advocate for yourself. Honor the things you’ve done.”
She adds, “It’s important to say this is how I got to be who I am, that’s what Frida would do.”