Epistemic injustice. You may not recognize the term, but trust me when I say you have experienced it. Essentially, epistemic injustice is the force which renders someone’s voice—or, more broadly, his or her declared experience—either more or less credible than someone else’s. If we break down the term into its two constituents, “epistemic” is derived from the ancient Greek term epistēmē—meaning “of or relating to knowledge”—while injustice denotes a lack of fairness. But the concept of epistemic injustice is not only about the unequal access to or acquisition of knowledge, as the simple pairing of these two words may suggest. Rather, epistemic injustice, as officially coined by feminist philosopher Miranda Fricker, refers to how our society’s power structures inform our perception of knowledge, elevating the credence of testimonies offered by persons who already possess power in our society while silencing the testimonies of those who do not.¹

To exemplify this idea, I will share an instance of epistemic injustice from my own life. I must begin with a shameless disclosure: I am a grown woman who occasionally—alright, frequently—pees her pants. You might be wondering how this is at all relevant, or perhaps you are nodding in resonance for you also experience this issue. But I assure you, this is a key detail to my anecdote, as my struggle with incontinence is what led me to schedule an appointment with a general primary care physician, which is ultimately where the epistemic injustice took place. As we are all too aware, the healthcare system is rife with barriers, one barrier being that in order to secure an appointment with a urogynecologist, the type of specialist who treats incontinence issues, one must first be referred by a primary care doctor. So, happily obliging to jump through this hoop, I arrived for my appointment—anxious to discuss such a sensitive and frankly embarrassing subject, but eager to take the next step toward finding a solution.

I was immediately comforted by my physician. She created a nonjudgmental space where I felt like I could detail every aspect of my struggle with incontinence without feeling ashamed. She externalized the incontinence, so it no longer felt as if it was a reflection of me—in other words, something I could be judged for or embarrassed about—but rather, just a problem I was facing. The doctor assured me that the issue was much more common than I previously thought, and that the stigma surrounding the topic is what keeps women silent. She then explained that she would like to refer me to a urogynecologist who specializes in urge incontinence, who could then determine a treatment plan and help alleviate the issue.

At this point, I felt great and was preparing to leave. The doctor then explained that this was a fellows’ clinic, and she was hoping that she could brief some of the doctors in training on my case. I said of course she could share my case with them, and she left the room. About ten minutes later, there was a knock on my door.

Three male fellows entered, with my doctor trailing behind them. The tallest of them introduced himself and explained that upon hearing the details relayed by my physician, a urogynecologist consult did not seem necessary. “It sounds like this is more of a psychological issue, and I think you should consider cognitive behavioral therapy.” He handed me a pamphlet for CBT, titled Mind Over Bladder. At this point, the four physicians were crowded into my tiny exam room, all eyes on me, and I felt helplessly outnumbered. Out-powered. My original physician did not counter what was being said, and the other male fellows did not even bother to introduce themselves. I struggled to understand how these fellows could come to such a conclusion without first meeting me or hearing about the situation in my own words. I wondered what information they were given that would lead them to disagree with the attending physician. “Female, 20 years old, presents with urge incontinence.” Maybe the description was not even that certain—perhaps instead it read “Female, 20 years old, claims to experience urge incontinence,” thus adding some doubt to my testimony. Or maybe the fellows did not even get that far. Perhaps the only word they needed to hear was “female” before they began doubting what I had to say about my body.

While this story might seem alarming, please understand that my experience is one of relative privilege. As a cisgender, white-passing Latina with a college degree, I am not subject to the same prejudice and discrimination that some others are. The clinical realm, insofar as it is an institution built and maintained by humans, is subject to the same social biases and forces as our greater society. With that said, racism, sexism, homophobia, and transphobia are reflected and reinforced by the actions and choices made by physicians and other providers. In the same manner that a woman’s story may not be uplifted or believed in a social setting, it is subject to dismissal in a clinical atmosphere. Likewise, as we are now acutely aware of the gross neglect of Black testimonies by the police and other widespread institutions, what makes us think that healthcare would be an exception? Why are we not fully and exhaustively addressing prejudice in the field that most directly deals with matters of life or death? And finally, why are we not talking about epistemic injustice?

After all, epistemic injustice is the root of the issue. It operates off of purported power dynamics to cast some privileged individuals as worthy of being listened to and the remaining individuals and their first-person narratives as dismissible. I cannot emphasize enough this is more than just disrespectful; epistemic injustice has profound effects on health outcomes and is, therefore, a main force contributing to health disparities.

For one, epistemic injustice limits access to care. In the story I shared earlier, the fellows’ refusal to refer me to a specialist would have prevented me from getting the care I needed. More extreme examples of restricted access include, but are not limited to, hormone treatment for transgender persons being denied if their needs are not viewed as legitimate, non-English-speaking patients whose pleas are ignored because they are spoken in a language unfamiliar to the provider, and failure to care for homeless persons whose complaints are perceived as unintelligible.^{2, 3, 4}

Beyond access, epistemic injustice lowers the quality of care persons receive. There is extensive literature demonstrating that racial bias is apparent in pain assessment, making it so black patients are less likely to be believed when they express complaints of pain.⁵ Similarly, studies have shown a significant difference in the way that providers respond to boys and girls who complain of pain during pediatric consultations. Even when the boys and girls expressed identical sentiments, the providers rated the boys as experiencing more pain than their girl counterparts.⁶ What these examples suggest to me is that the clinical realm not only reflects the perils of epistemic injustice but also reinforces these issues by demonstrating to Black and female patients that what they communicate to others may not be believed or accepted as true. Beyond that, this cascade of neglect that is rooted in epistemic injustice could precisely explain why pain experienced by Black females goes more undertreated than other patient groups.⁷

So in today’s climate of collective action, while we are recommitting ourselves and our institutions to battle injustice, I am asking that we broaden our gaze. If we extend our perspective on injustice to consider the ways in which the silencing of certain voices has, in turn, raised the dominant—even oppressive—voices to a louder volume, then we can realize that our society is strictly structured in accordance to an antiquated and biased standard of knowledge and power. We each have a place in that structure, though it is fluid: placing us in the position of power in some settings, and then relegating us to silent subservience in others. In imagining a world of epistemic justice—where these systems are dismantled, leaving us all free—I believe our positions would all be equal. Each person would, therefore, be in possession of a story that is valuable, a truth that is believable, a voice that is audible, and a knowledge that is learnable.

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¹ Fricker M. Epistemic Injustice: Power and the Ethics of Knowing. Oxford University Press; 2009.
² Sanchez NF, Sanchez JP, Danoff A. Health care utilization, barriers to care, and hormone usage among male-to-female transgender persons in New York City. American Journal of Public Health. 2009;99:713-719.
³ Shi L, Lebrun L, Tsai J. The influence of English proficiency on access to care. Ethnicity & Health. 2009;14(6):625-642.
⁴ Omerov P, Craftman AG, Mattsson E, et al. Homeless persons’ experiences of health- and social care: A systematic integrative review. Health and Social Care. 2019;28(1):1-11.
⁵ Hoffman KM, Trawalter S, Axt JR, Oliver MN. Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. PNAS. 2016;113(16):4296-4301.
⁶ Earp BD, Monrad JT, LaFrance M, Bargh JA, Cohen LL, Richeson JA. Gender bias in pediatric pain assessment. Journal of Pediatric Psychology. 2019;44(4):403-414.
⁷ Consumer Reports. Is bias keeping female, minority patients from getting proper care for their pain? The Washington Post. https://www.washingtonpost.com/health/is-bias-keeping-female-minority-patients-from-getting-proper-care-for-their-pain/2019/07/26/9d1b3a78-a810-11e9-9214-246e594de5d5_story.html

Leah Teresa Rosen is a Master’s student in Columbia University’s Narrative Medicine Program. She graduated from Duke University in 2019, where she earned an interdisciplinary degree in Illness and Identity. Her work has recently appeared in Scientific American, and she aspires to a career in pediatrics, medical education, and social justice work.

Image by Bryant L. Jones