12/06/2018 05:00 pm ET Updated 18 minutes ago
In Allison P. Davis’ recent Lena Dunham profile in The Cut, which focused heavily on the “Girls” creator’s chronic health issues, Dunham told the writer at one point that she’d “like to be the face of” the fibromyalgia drug Lyrica. This comment, among others, left me wondering: Is Dunham capable of being part of a collective movement without trying to be its face?
I don’t think she can. And the fact that she’s trying to be is a problem.
Despite multiple public mishaps over the past several years caused by her own lack of awareness, Dunham continues to demand center stage ― in her own work, in her mother’s photography series on gender, in the #TimesUp movement, and now among the disabled and chronically ill. It’s because of Dunham’s privilege that she’s able to do this. Privilege of any kind (racial, economic, gender) is not inherently bad, but it comes with the responsibility to amplify the voices of marginalized folks.
Lena Dunham, in her refusal to do this and instead be the voice herself, is hurting the very causes she claims to support. When she accused Aurora Perrineau, a Black biracial woman, of fabricating a rape allegation against one of Dunham’s “Girls” colleagues in 2017, she made it clear she doesn’t understand both the weight of her voice and the very movement she claims to ardently support. The same can be said for her eagerness to write the script for a film about Syrian refugee Doaa Al-Zamel rather than insisting the team hire a Syrian writer.
These are just two items on Davis’ “list of things Dunham has been asked to apologize for” but has ultimately failed to learn from. Her recent guest editor’s letter in The Hollywood Reporter is another example of the media’s willingness to allow Dunham to fail up, giving her a platform to excuse her dismissal of Perrineau as a learning experience. I’m hesitant to believe that her time silent on the issue was spent in introspection; if it had been, she may have had the foresight to realize the “Women in Entertainment” issue of The Hollywood Reporter was not supposed to be a public forum for her own redemption. These actions and subsequent hollow apologies prove Dunham can’t be the one to represent the chronically ill and/or disabled ― especially the most marginalized of us, a group she repeatedly fails to uplift.
Rather than center Dunham’s narrow experience battling chronic illness as a wealthy white woman, we should pass the mic to people with diverse experiences.
I’m a Lebanese-American Muslim woman with endometriosis and mental illnesses. I haven’t experienced poverty, but my family has always struggled financially and continues to do so now. I understand the frustration and difficulties that come with finding good care as a woman of color with illnesses often considered “invisible” or even fake.
The intersections of poverty, race, class and gender with illness and disability are complex. To properly navigate these issues, it’s crucial we seek out those who have lived in their crossroads. Rather than center Dunham’s narrow experience battling chronic illness as a wealthy white woman, we should pass the mic to people with diverse experiences. And though our Twitter feeds should hardly be where our engagement ends, it’s a good place to become familiar with intersectional issues in the disability and chronic illness communities.
Disabled Black women like Vilissa Thompson, Keah Brown and Imani Barbarin highlight the scarcity of disabled people of color in the media, the lack of diverse voices within the disability community, and the particular challenges Black disabled women face. (Check out #DisabilityTooWhite, #DisabledAndCute and #HealthcareWhileColored to see their influence in action.) And research substantiates these women’s experiences. Black people, and particularly Black women, are not receiving equal health care to their white counterparts. By and large, doctors ignore Black women’s pain and spend less time with Black patients, both of which can cause medical trauma and frustration when seeking help for chronic illnesses or disabilities. Through Thompson, Brown and Barbarin, we learn about the experiences unique to Black disabled women. Amplifying their voices encourages more diverse, inclusive and representative discourse from which everyone benefits.
The health care battle in the U.S. may seem like just another policy debate to Lena Dunham and other wealthy Americans, but its implications are outrageously costly for middle class and poor chronically ill people. Azmia Magane and Porochista Khakpour both write about living with chronic illnesses and how being sick is far from cheap ― it’s actually criminally, immorally expensive. The road to diagnosis for so-called “invisible” illnesses like lupus, Lyme disease, fibromyalgia, endometriosis and others is a painstakingly difficult and long process, and running multiple tests and visiting several specialists takes an economic and emotional toll. I’ll let you guess how many doctors told me that my excruciating cramps were just “part of being a woman” before I was eventually diagnosed with endometriosis.
Is Dunham capable of being part of a collective movement without trying to be its face?
In sharing their experiences, Magane and Khakpour also highlight an issue that an overwhelming number of Americans face: Around 79 million of us struggle to pay our medical bills and have accumulated medical debt. A diagnosis can bring relief and validation, but it also brings a slew of medical bills to fund treatments, trips, hospital stays and prescriptions. I’ve personally had to pick and choose which doctor I can afford to see in a given month. Money shouldn’t be a barrier in accessing quality health care ― and for Lena Dunham, it isn’t. Patients like Dunham, who can afford health care and have adequate insurance, should be using their privilege to advocate for universal health care and increase visibility of medical debt and its effects.
Even activism itself is often inaccessible for many who wish to advocate for themselves. To combat this, Aditi Juneja, a lawyer and writer, used her experience as a woman with a disability to create the Resistance Manual, an intersectional and accessible tool that aims to help English speakers educate themselves on American policy issues, organize around them and take action. But most Americans who regularly protest the Trump administration’s injustices don’t consider the lack of accessibility in activist spaces ― including public marches. Mia Ives-Rublee is a disabled woman of color and the founder and coordinator for the Women’s March on Washington Disability Caucus. In the early days of the Women’s March, the movement centered around white women, and even when women of color took the helm, disability rights were absent from its platform. Ives-Rublee worked with the march’s co-chairs to ensure the movement included these rights.
Social justice movements, if they wish to be accessible to all, should include and engage with disabled people from the point of inception. Disability can intersect with any and all identities, and disability rights should be considered integral in any activist space. If she truly wanted to be an advocate, Lena Dunham could use her fame and access to request meetings with leaders of these types of events and demand accessibility for the movement’s chronically ill and disabled members.
I am not among the most marginalized, nor can I possibly include every person’s unique experience. I am non-disabled, cisgender, have good insurance (with high co-pays), somewhere to live, food to eat and a great support system. My experiences are considered standard in a system not created to serve everyone. Trans and non-binary people, undocumented folks and indigenous people all have unique and important experiences with chronic illness and disability that also need amplification. What I and many others ask of Lena Dunham is simple: Own your privilege and use it to amplify those whose voices are so often pushed out into the margins, where this system wants them to stay.
Reina Sultan is a young professional working in international development with a focus on public health. She is passionate about advocacy and representation of intersectional and diverse voices.
Lena Dunham Cannot Speak For All Women With Chronic Illness