Expert of Your Body: Author on Claiming Agency For Yourself, Your Work and Your Life

Sarah Ruhl (L) in conversation with Jessica Thebus on the power of the body in identity.

Call someone a genius and it’s a lofty compliment. But Sarah Ruhl, prolific playwright, poet and author, is officially a genius, as a recipient of the MacArthur Genius Award, as well as two-time finalist for the Pulitzer Prize.

The author of Smile: The Story of A Face, was on stage at the Chicago Humanities Festival recently, speaking with her friend and colleague, Jessica Thebus, artist and Director of the Northwestern University MFA Program.

They discussed the gendered agency and ownership of your own body as a woman, as a human, and as someone who loses control of its ability to move and to respond as intended in the workplace and in the world.

“At @Chihumanities, Sarah Ruhl, author of “Smile: The Story of A Face,” spoke with her friend and colleague Jessica Thebus, artist and Director of the @NorthwesternU MFA Program on the power of the body in identity. #Smile #womenleaders”

Ruhl was pregnant with her second child, when she says, “my smile walked off my face and my body stopped obeying my heart.”

Diagnosed with Bell’s palsy and told she may never recover, Ruhl says enduring and understanding this chronic condition without a neat narrative arc, one “that resisted normal narrative progression,” was difficult and contributed to her journey of more than a decade of writing her book.

Read more in Take The Lead on invisible disability

She decided to take heed from a fortune cookie she read soon after her diagnosis: ”Deliver what is inside you and it will save your life.”

Thebus, who became friends with Ruhl when they were both in high school and taking classes at the Piven Theater Workshop in Evanston, Il., adds, “There is such a code of silence about female bodies.”

Ruhl adds, “There is active disgust. And there’s a revulsion about women’s embodiment for Bell’s palsy, it’s a visible, but invisible disease.”

After writing her latest book about dealing with the struggles of the disease, Ruhl says people thank her for finding the language to describe it. She adds, “The book is about— who is the expert of your body?”

“After writing her latest book about dealing with the struggles of #bellspalsy, #SarahRuhl says people thank her for finding the language to describe it. She adds, “The book is about— who is the expert of your body?” #Smile #invisibledisease #femalebody”

Thebus says, “Our own experience with our own bodies is our bridge to other people.”

In the workforce, diversity, equity and inclusion efforts often do not include those with disabilities, or neurodiversity. October is National Disability Employment Awareness Month, and the realities of experiences in workplace culture for persons with disabilities are often disturbing.

“October is National Disability Employment Awareness Month. In the workforce, diversity, equity and inclusion efforts often do not include those with disabilities, or neurodiversity. #NDEAM #DisabilityInclusion”

“A recent survey from Global Disability Inclusion in partnership with Mercer found that employees with disabilities are less satisfied with their workplace than their non-disabled counterparts,” reports All Work.

Benefit News reports, “One in four Americans live with a disability that impacts life activities, according to the Centers for Disease Control and Prevention, and at least 20% of the adult population is neurodiverse — which commonly refers to individuals with ADHD, dyslexia, dyspraxia and autism. However, this large population is largely unemployed: around 80% of disabled individuals are out of the workforce.”

Bias and discrimination against persons with disabilities in the workplace is historic, rampant and ongoing.

“Bias and discrimination against persons with disabilities in the workplace is historic, rampant and ongoing. #DisabilityInclusion #Accessibility”

Catherine Dunne writes in The Varsity, “When we think of accommodations and accessibility, we usually think of wheelchair accessibility: ramps, wide hallways, elevators, higher desks — the whole nine yards. But although ‘accommodations’ and ‘accessibility’ seem similar, the two terms have different meanings.” 

Dunne writes, “Accessibility refers to systems that are designed to be used by everyone, while accommodations are systems designed to be used by a few specific people. Different disabilities and chronic illnesses require different types of accommodations. Unfortunately, employers do not make all of those accommodations available.” 

Read more in Take The Lead on disabillty fairness in the workplace

For Ruhl, dealing with the effects of Bell’s palsy meant the left half of her face “had fallen down,” was immobile— she could not smile and she had constant ringing in her left ear. She was unable to blink.

As a feminist activist, Ruhl says, “I don’t put stock into what you look like,” but that you cannot physically control what your face looks like, is confronting and disturbing.

“I hated my face,” Ruhl says. “I hated something that felt like me.”

Taking 10 years to write this book and to resist the narrative of shame and blame, Ruhl says, she finally “learned to trust myself as my own expert on my own story.”

“Taking 10 years to write “Smile: The Story of A Face,” and to resist the narrative of shame and blame, #SarahRuhl says, she finally “learned to trust myself as my own expert on my own story.” #womenauthors”

For women, particularly, “being able to be right about their own story” is the goal, Thebus says.

The shame about one’s appearance, ability and identity is particularly plaguing and reinforced in a culture that is offering endless solutions for appearance, age and ability.

“Why is there shame when you did nothing wrong?” Ruhl asks. “It’s about losing control of your body and it not belonging to you.” 

Appearance bias and especially against women and women of color is a distinct concern in the workplace, as well as in the broader culture,” the editorial board of The Observer reports recently.

“We live in a world where our role in the professional world is dictated by the way we look and dress. There is an expectation that we dress a certain way, that our features—such as hair or eyebrows—are in an acceptable style, or even that our weight and face fit into the eurocentric standard of beauty. Plus, those expectations are treated with a more critical lens regarding women, and even more so with women of color (WOC).”       

Read more in Take The Lead on difficulty being authentic at work

Facial alterations and disfigurement that Ruhl endured for many years is also a source of distinct mythology, demonization and harassment.

“Facial alterations and disfigurement that #SarahRuhl endured for many years is also a source of distinct mythology, demonization and harassment. #ableism #beautystandards”

In his 2013 book, Beauty Pays: Why Attractive People Are More Successful, economist Daniel S. Hamermesh “shows that the attractive are more likely to be employed, work more productively and profitably, receive more substantial pay, obtain loan approvals, negotiate loans with better terms, and have more handsome and highly educated spouses. Hamermesh explains why this happens and what it means for the beautiful—and the not-so-beautiful—among us.”

In a recent oped in the Philadelphia Inquirer, David Sarwer writes that the villains in the James Bond movies are often facially disfigured, including Rami Malek in the newly released “No Time To Die.”

Sarwer writes, “Unfortunately, for those living with facial disfigurement, there also is a bias. This one is negative. The evidence tells us we make more negative assumptions about the personality characteristics and behaviors of those who look different.”

And while culture supports ableism and a tyranny of a singular definition of beauty and accepted appearance, Thebus says, the question needs to shift for women to, “What can the body do from what does the body look like. That is your currency in the world.“ She adds, “That is kind of infinite, even if there are things you cannot do. We need to be rooted in our bodies with delight and capability.”

“And while culture supports #ableism and a tyranny of a singular definition of beauty and accepted appearance, Thebus says, the question needs to shift for women from, “what does the body look like” to “what can the body do?” ”

“This is a healing story,” Thebus says, ”that is not simplistic or formulaic.”

Ruhl adds, “Even with paralysis. Eventually something changes.”