By: Julia Goldberg

I first met Emily Rapp Black approximately eight years ago when we met to discuss a writing course she had been scheduled to teach at Santa Fe University of Art and Design. I had been assigned the class instead because Emily’s son, Ronan, at the age of 9 months, had been diagnosed with the genetic terminal disease Taya-Sachs, and Emily was reducing her instruction schedule.

We had met briefly once before, at a holiday party held by a mutual friend. Her red-headed baby wore a Santa hat and I had idly glanced at the beautiful successful writer, her husband and gorgeous child and thought how unattainably perfect their lives seemed and therefore must be. Although I am prone to rampant misjudgment of people, my quick takeaway of Emily was wildly off base, even for me. Emily became a close and dearly loved friend who is certainly beautiful, brilliant and generous, but whose life has been far from perfect. Much of her work — through her writing, teaching and activism — centers on disrupting the poisonous notion of perfect.

Emily was born with a congenital birth defect that required the amputation of her left foot when she was 4, and later, her left leg below her knee, a story she told in her critically acclaimed memoir Poster Child, noting the way in which this event cast a pre-written narrative: “I was newly diagnosed with a birth defect that seemed to have already set the stage for my life before the curtain had even gone up.”

She became a fierce athlete, as well as an outspoken advocate for the disabled.

Her son Ronan died in 2013 from the horrific, devastating disease that slowly claimed his life. She chronicled the experience of caring for her dying son in The Still Point of the Turning World, becoming a voice for parents, as she described it in a 2011 New York Times essay, whose children have no future. “Our goals are simple and terrible,” she wrote, “to help our children live with minimal discomfort and maximum dignity.”

Since Ronan’s death, Emily has continued as an advocate with the National Tay-Sachs and Allied Diseases Association.

Her upcoming books include Cartography for Cripples, which examines the intersection of art, disability and sex through the life and work of Frida Kahlo; and Sanctuary, which examines the word “resilience” – and for which she received a Guggenheim fellowship. Both will publish in 2020.

I was newly diagnosed with a birth defect that seemed to have already set the stage for my life before the curtain had even gone up.

After Ronan’s death, Emily divorced, fell in love again, remarried and is now the mother of a beautiful, feisty, red-headed 4-year-old daughter. She is an associate professor of Creative Writing at the University of California-Riverside, where she teaches creative nonfiction and medical narratives in the UCR School of Medicine.

When I spoke with her recently, she had just returned from TedMed, the health and medicine branch of the TED talk conferences. She’s become deeply involved with doctors working on palliative care issues. She had recently delivered a lecture to medical students on palliative pediatric care herself and has been focused lately on the examination of how questions about providing end-of-life care can inform one’s entire lived experience.

“Regardless of whether you’re terminally ill or not,” she says, the palliative care doctors she’s met through her work “have taught me how to make things happen now rather than waiting. They’ve also changed my ideas about life – what the meaning of a life is, which life has value, and the answer to that is: all of them.” 

Emily eschews attempts to depict her as inspirational, chafes when people admire her for surviving an avalanche of heart-searing loss, rejects the notion of memoir — the genre in which she writes and teaches — as a forum for self-absorption. Instead, much of her work focuses on what is generally described as “medical narratives,” writing and helping others write about their experiences.

“It makes me feel like I’m doing something productive in helping people frame experiences that otherwise would destroy them,” she says. “It’s an act of service, which is what I think writing should be anyway. Unfortunately, memoir has become some navel-gazing, inspirational overcomer crap that people eat up. I don’t want to be a life guru. What I want to do is help people tell their stories.”

She tells her own stories fearlessly. Case in point: In 2012, Emily wrote a Slate essay in which she called out former Republican presidential candidate Rick Santorum for his statement that pre-natal testing increases abortion rates. At that point, Tay-Sachs had rendered Ronan blind and paralyzed, and he had begun to experience terrifying seizures. Emily had pre-natal testing, but it did not reveal her rare mutation. She wrote that had she known her son would have Tay-Sachs, she would have researched what that would have meant for him;­ then she would have had an abortion. “Rick Santorum, I would like you to meet my child,” she writes in the essay. “You should see how beautiful he is; you should see how he suffers, how his parents suffer ....”

The essay went viral; Emily says the hate mail included someone telling her she was “going to hell” with “your child.” She did not back down, and remains outspoken about women’s rights.

“At that time, I became politicized in the sense that I really felt passionate about advocating for things like women’s reproductive rights and trying to engage those issues in a nuanced way,” she says, “rather than pro-life or pro-choice, which are both incorrect descriptions of what those positions represent. I just felt … I didn’t care as much and felt I could speak my mind. The worst thing had already happened, so I didn’t have reservations.”

She’s involved with creating an offshoot of the Writers Rising movement that focuses on female-identified writers with the idea of finding ways to “increase dialogue across the political divide.”

She has also co-written with Lisa Glatt a dark, funny TV script called Able, which centers on the lives of two disabled women living in a Trump world where the American Disabilities Act has been abolished. She describes it as a dramedy of two BFFs with extraordinary bodies living ordinary lives in Los Angeles.  

Emily sees the battle against disabled discrimination as “the final frontier,” of prejudice. “It’s completely intersectional,” she notes. “It hits every class, every gender or gender identification, every ethnicity, every skin color, every age; it’s completely democratic.” 

It makes me feel like I’m doing something productive in helping people frame experiences that otherwise would destroy them,” she says. “It’s an act of service, which is what I think writing should be anyway. Unfortunately, memoir has become some navel-gazing, inspirational overcomer crap that people eat up. I don’t want to be a life guru. What I want to do is help people tell their stories.

While she doesn’t relish educating people about living with disabilities, she does take her role as a voice for being differently abled as an “ethical obligation.” Because, she notes, “when you find yourself in a unique position to say something about something that might help other people or change the conversation, you have to do it.”

Cartography for Cripples examines the complexity of this terrain through Kahlo’s life. “People are viewing her through a particular lens,” she says. “The overcoming lens or the tragic lens, but most people with any kind of disability – no matter how severe – live in the middle of those two. Culture doesn’t want to create that space because then it’s easier to fall into that space.” 

Sanctuary similarly grew out of Emily’s attempt to “get to the bottom” of the word resiliency.

“I just became fed up by the word,” she says. “I kept hearing it everywhere. I was tired of people saying to me, ‘You must feel like you have a brand new life,’ or ‘You’re so brave for beginning another life.’ I was just like, ‘That is not consistent with my experience; that’s not what’s happening.’ ”

Her books, she says, have all been born “out of an insistence to counter whatever narrative is given to me as the truth when it doesn’t resonate or sit right.”

The first written use of resilience came from Vikings, who used it for shipbuilding, she says. They would put wood into water, then once it was “warped and weird looking,” use it in ships because the very fact that it was warped and weird looking is what made it effective.

From there, she began to think about resilience as it exists in the natural world, such as the resilin that holds butterfly wings together – and the “resilience ... that doesn’t have to do with human consciousness and endless talking, which is a real model for what resilience can mean.”

Ultimately, she says, the book uses her own experience “of having a life burn down and trying to raise another one, without saying I’m going to forget the other one happened. I’m not going to become some glorious bird flying over the ashes. I have one wing and my beak is messed up and I have one eye ....” That, she says, “is resilience, going on even when it looks like you can’t do it anymore. It’s not a will-based thing; that’s what it is to be alive: to want to live.”