Distraction Free Reading

When You Can’t Look Away: Seeing and Difference in American Medicine

Juliet

When I interviewed her, Juliet was a third-year medical student and a dedicated member of her medical school’s interest groups on social justice. I interviewed her because her name came up in conversations with other medical students at her university, participating in anti-racist work in medicine. She had helped tally the results for her school’s racial justice report card the year I visited, and she cared deeply about issues of racial justice in medicine. She demonstrated in-depth knowledge and interest in our interviews as she discussed just how people of color were disadvantaged in medicine.

Over “My Cherie Amour,” I asked Juliet, like I asked all my medical student interlocutors, what medical specialty she was thinking about going into once she graduated. She replied curiously: “I am kind of really interested in dermatology, but I feel like I can’t be, ‘cause it’s literally a superficial field.” At the same time, she recognized dermatology as “behind” on issues that affect people of color. A bit earlier, she had indicated that many of the people she looks up to, who fight for racial justice, work in primary care fields. “It kinda makes sense,” she said. “People who work with more upstream problems” (like diabetes, hypertension) were seeing problematic differences in rates of diseases that cause severe debility, disability, and death between people of different races. That seemed like a reasonable way to tailor one’s interests in racial justice.

Juliet’s response was consistent with responses I had gotten from other medical students who spent time thinking about and fighting against racism in medicine. Namely, these students often appealed to the inner sameness of human beings across racial categories. These views resulted in special attention to fields that dealt with what they perceived as the inner body. Simultaneously, some students named dermatology as a field that was lacking when it came to producing equal amounts of knowledge about different groups of people. My interviewees noted the difficulties in recognizing, diagnosing, and treating dermatological disease when the knowledge resources available to them did not reflect the reality of living and working in a diverse city. “If you open up a dermatology book, all you see is white skin.”

In this post, I reflect on a clash in ethical orientations toward difference. One common stance among advocates for anti-racism in medicine is that outer differences do not matter. Because humans are the same on the inside across racial categories, recognizing the “superficial” layer (skin, hair, self-presentation) stands in the way of proper care. The other ethical orientation that I have since seen employed in particular groups within dermatology is wholly different. I have spoken to dermatologists who want to alleviate disparities in care and better attend to people with dark skin (also called “skin of color” or “ethnic skin”). They take the stance that outer differences do matter and that physicians must attend to those differences to provide adequate care.

Janelle

Album cover art from Janelle Monáe's hit track Pynk. The image shows Janelle Monáe, a black woman, wearing a pink outfit standing in a desert beneath a blue sky.

Album cover art from Janelle Monáe’s hit track Pynk.

Janelle Monáe’s album Dirty Computer encapsulates well the competing frameworks I witnessed in my two fields. Released in 2018, Dirty Computer shows serious attention to social movements, likely including the ongoing #BlackLivesMatter and Women’s March movements that began in 2013. #BlackLivesMatter influenced my own work, and the anti-racist work and politics of my interlocutors and other medical students who began student movement groups like WhiteCoats4BlackLives. An intersectional frame (Crenshaw 1989) colors Monáe’s album. It attends to issues of race, gender, class, and sexual orientation. Here, Blackness, hair texture, femininity, and queerness are not disqualifying features for claiming the American dream and the promises that lie therein.

One lyric, in particular, stands out. In “Pynk,” a queer and erotic track, Monáe whispers in the outro, “deep inside, we’re all just pynk.” This line is a direct appeal to the idea that humans are fundamentally the same on the inside. This ideology corresponds with mid-century (and beyond) cultural anthropology work that has posited that race is a social construct—”not real.” That framework has brought with it a certain ethos: one cannot say anything meaningful about a person based on observed, supposedly racial differences. Yet, everyday discourses tend to posit that racialized differences are innate and real. Race supposedly corresponds to ancestry, ethnicity, or outwardly identifiable physical traits, such as hair, skin, and facial physiognomy.

Throughout the album, Monáe aesthetically alludes to Martin Luther King, Jr.’s vision of equality. In King’s dream, his children would “not be judged by the color of their skin but by the content of their character.” This points to a slightly different understanding of what is “inside” compared with  medicine’s appeal to inner organs: specifically, character. Yet both philosophies claim that the superficial layer (King invokes the skin specifically) does not matter. Skin ultimately misleads or detracts from the constitutive realities that lie beneath it. Monáe’s final track, “Americans,” exemplifies this:

 

“You see my color before my vision.

Sometimes I wonder if you were blind,

Would it help you make a better decision?”

 

If not seeing—or pretending not to see—differences (“colorblindness” in contemporary parlance) does not resolve racism, what of a deep-seated American understanding in both medicine and the ordinary social world that tells us to simply ignore racial difference?

An earlier track on Monáe’s album provides a brief glimpse of an alternative. In “I Got the Juice,” Monáe and Pharrell promote uniqueness and individuality, that there is no one quite like you. This approximates an ideology I have come across in studying the field of medicine. The most extreme version of this is a general appeal, based on the widespread uptake of genetics and a belief in genetics as the final frontier of medicine, and a gateway to “personalized medicine.” However, personalized medicine does not necessarily take into account differences on the surface of the body. As Prainsack (2017) has noted, “structured, digital, quantified, and computable data” are the variables that matter in the context of personalized medicine. The recognition of ultimate uniqueness, down to the last A, C, G, or T, also escapes having to deal with differences on the body’s socially phantasmic surface.

Dr. Rogers

Dermatologists who care about treating people with dark skin have and, arguably, must have another way to engage with difference. Dr. Rogers is a Black woman dermatologist who specializes in hair loss. While I am currently parsing understanding difference as a matter of ethics, in our interviews, Dr. Rogers parsed it as a matter of competence. She wondered how dermatologists could get out of a residency program without being able to diagnose even common diseases on Black skin.

Recognizing difference is an inherent part of dermatologists’ practices. Diagnosis typically involves sorting out differences along the axis of (ab)normality or nosology, or differential classification by disease category. “Is this what normal or healthy skin is supposed to look like?” and then “Is this acne,” for instance, “or atopic dermatitis?” Judgments about who is sick and with what disease have life or death consequences. Care is determined based on such distinctions. However, these determinations are not made in a contextless vacuum but in a social world where other categorizations are operative. Race is just one of those categories that matter. Diagnosis and misdiagnosis of disease and associations of specific disease categories with certain groups are often unevenly distributed along racial lines, lines that also influence the concept of clinical “normality.”

Unlike most medical specialties, dermatology is heavily organized around visuality. As Dr. Rogers pointed out plainly in an interview, “all we have to do is look at it, just look. No text, no cutting, no nothing. Just look at it, and ‘I have a suspicion that you have this diagnosis,’ you know?” Dr. Rogers received training in a program in which responding to the needs of patients of color was a requirement to prove one’s competence. For her, this was the fun part of being a dermatologist. But for many dermatologists, the reality of their training is that textbooks and patient pools did not always reflect the diversity of human skin tones. A 2011 survey of dermatologists revealed that 47% of dermatologists and dermatology trainees found their training inadequate for responding to patients with darker skin (Buster et al., 2012).

How can scientists recognize pathology on Black skin when they have only seen it on white skin? What are the consequences? We have evidence that it makes a difference. In a 2020 research letter in the Journal of the American Academy of Dermatology, a study demonstrated that medical students were inconsistent in their ability to diagnose skin conditions. Mis-recognized diseases in patients with dark skin compared to those with lighter skin included squamous cell carcinoma, urticaria (or “hives”), and atopic dermatitis (Fenton et al., 2020). In our interview, Dr. Rogers expressed that some of her darker-skinned patients have difficulty getting a proper diagnosis of psoriasis. According to Dr. Rogers (and others), psoriasis is the dermatologist’s bread-and-butter. Yet on Black skin, dermatologists tend not to see it.

Coda: Objectivity and Recognition

Daston and Gallison (1992) note the weight given to images as “objective” in the life sciences. “In its negative sense, this ideal of objectivity attempts to eliminate the mediating presence of the observer.” At worst, non-diverse dermatology textbooks reinforce a cultural acceptance of Black pathologies as either ordinary or unimportant. At their absolute best, they reinforce a more progressive American ideology that says that differences in the skin do not matter, that one would be biased to believe so, and that recognizing difference is, in fact, harm. They set dermatologists up for the acceptable failure of mis- or non-diagnosis of skin pathologies for people with dark skin, while also setting those patients up for non-recognition.

In the last 20 years, the recognition that diseases look different on people with varying skin colors has gained popularity in dermatology. This has opened the door for even more significant recognition that conditions might also behave differently in people with different skin tones. These recognitions arguably require different ethical orientations and have thus been a source of debate in the field. Some dermatologists are beginning to recognize that they must acknowledge difference but struggle to do so without reifying race. Shifting to recognizing difference may also signal a shift away from applying objective measures. Older approaches to psoriasis diagnosis, for example, may be out. Rather than relying on a scoring system that includes “erythema” or the degree of redness of the skin—unobserved in many dark patients—dermatologists might apply more flexible modes of diagnosis. The dermatologists’ ability to detect psoriasis may depend on a subjective understanding, a feeling, or an “I know it when I see it.”

In dermatology, as in society, people are coming to terms with balancing two ideas at once: “deep inside, we’re all just pink” — but putatively “superficial” difference matters too. The question, then, is how to engage ethically and how to keep difference from becoming disparity.


References

Buster, Kesha J, Erica I Stevens, and Craig A Elmets. 2012. “Dermatologic Health Disparities.” Dermatologic Clinics 30 (1): 53–viii. https://doi.org/10.1016/j.det.2011.08.002.

Crenshaw, Kimberlé. “Demarginalizing the intersection of race and sex: A black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics.” u. Chi. Legal f. (1989): 139.

Daston, Lorraine, and Peter Galison. 1992. “The Image of Objectivity.” Representations 40 (Seeing Science): 81–128. https://www.jstor.org/stable/2928741.

Fenton, Anne, Erika Elliott, Ashkan Shahbandi, Ekene Ezenwa, Chance Morris, Justin McLawhorn, James G Jackson, Pamela Allen, and Andrea Murina. 2020. “Medical Students’ Ability to Diagnose Common Dermatologic Conditions in Skin of  Color.” Journal of the American Academy of Dermatology, February. https://doi.org/10.1016/j.jaad.2019.12.078.

King, Martin L., Jr. “I Have a Dream.” Speech. Lincoln Memorial, Washington, D. C. 28 Aug. 1963

Monae, Janelle. 2018. “Dirty Computer.” Atlanta, GA: Wondaland.

Prainsack, Barbara. 2017. Personalized Medicine : Empowered Patients in the 21st Century. New York: New York University Press.

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