The following is a piece I wrote for a website that wound up falling through.  This is an important topic and needs to be both brought up and discussed, so I’m sharing it here. Note: a lot of cisgender-focused research is linked due to the availability.

The last several years have brought about more awareness of discrimination. From race to immigration status to gender, ignorant folks are waking up to reality. One area that continues to be an issue, though, is healthcare.

Authors have released books within the last few years highlighting discrimination in healthcare. Michelle Lent Hirsch documents these issues extensively in her book Invisible. Medical professionals are more likely to dismiss or downplay cisgender women’s health issues. That’s also true of those within the trans community and people of color. Providers assume physical issues are emotional or mental as opposed to investigating them. On top of these, providers will dismiss pain caused by other health issues, weight, or gender. It happens so often that there are names for these occasions, such as Trans Broken Arm Syndrome. These patients are less likely to have pain taken seriously, especially if Black and – god forbid – a Black woman.

Why is that?

The American Education Research Association journal explored gender biases. The 2018 study they published investigated students studying medicine. The authors found that men are depicted most often. Their prevalence in these textbooks actually had “a significant impact on the implicit gender attitudes” of the students. As a result, those studied associated cis women with stereotypical areas such as reproductive health instead of spaces like surgery, eye care, etc.

Implicit biases are subconscious beliefs we hold that are discriminatory. You can learn more about that below:

Dr. Kristen Young, DO, MeD, reflected on her education. “The way we learn medicine in medical school,” Young shares, “is very much rote memorization.” Educators give very little background or context for the information they present. Dr. Young says that context comes as students progress in medicine. Still, Dr. Young acknowledges that this focus on memorization “can be hard to shake.” So many students are busy trying to learn and memorize medical content. With the lack of education around oppression in most places, context can be harder to see. These students may not have the information to question the origins of information. That causes harm when these origins include a lack of diversity, experimentation, and literal torture.

It is vital to have that historical knowledge. As someone working in public health, that background helps me understand why patients may not trust medicine or doctors. I can then craft education to meet them where they are. For providers, that background helps them be mindful of the ways white supremacy moves through them.

Without that information, it can also mean we don’t recognize our roles – individual or systemic – or how we can address issues to push for health equity. We are not outside of the systems of inequity, but complicit.

Gender

Heather Edwards, PT, CSC, is a pelvic physical therapist and AASECT sex counselor. Treatments in the field of pelvic floor therapy focus on cis women, alienating cis men and those under the transgender umbrella. Pelvic floor issues affect anyone and everyone, though. This lack of inclusion causes men and trans folks harm. Edwards shares that some “who offer ‘women’s health’ services will also acknowledge that they also treat men and…are ‘trans-inclusive.’” Often, though, that’s shared with other providers and not patients or the general public. Other times, that’s lip service and not something these individuals strive to work toward.

Providers hold workshops based on genitalia, claiming they are inclusive of trans people. They don’t share who all is welcome in that space in descriptions of their offerings. They also don’t list what attendees should expect. It often winds up being exclusive by omission. The fear of encountering misgendering or even physical violence is real. That goes double for spaces people see as ‘women only.’ Edwards suggests providers hosting workshops or giving talks be transparent about their offerings. Educators and providers should be precise about what people can expect. That includes what language educators may use, group work, and more. Doing so gives people the ability to make a decision based on informed consent.

Edwards shares that schooling providers go through doesn’t match society. Schools teach students to “treat bodies through a biomedical model.” We know gender is a societal construct rooted in oppression and white supremacy. We know the disability community hates this model as well. Perhaps it’s time to stop using it altogether?

“It’s not our job to link genitals and gender,” Edwards says. Medical schools do not offer much LGBTQ+ education, though. As recently as 2003, medical schools in North America offered 6-10 hours on topics related to sex for general providers. Most of that focused on dysfunction or fertility, not cultural competency. If we don’t address biases or educate providers about groups they may not have encountered before, we make space for providers to bring their longstanding biases with them into the clinic.

Weight

Patients who are heavier often face discrimination within healthcare as well. There can be a lot of trauma, shame, and stigma around weight. Factors can include societal pressure, self-esteem, and the idea of ‘health’ looking a certain way. These external negative attitudes also lead to providers blaming patients’ weight or refusing to prescribe treatments for very real health conditions. People constantly die or lose organs because of the lack of care. That stigma isn’t helped by a lack of compassion in conversations providers have with patients. In fact, that harshness can lead to increased weight. Notably missing are ways to discuss weight that are culturally competent and compassionate.

I wish that were the end of the issue. Reproductive healthcare items like birth control patches, Plan B, and even pregnancy tests themselves were not tested on or calibrated for fat bodies.

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A post shared by Nicola Salmon – Fat Fertility (@fatpositivefertility)

The links Nicola shares above:

• Article 1
• Article 2

If patients allow providers to measure weight, those within healthcare need to be aware that this isn’t an indicator of health. It’s also not the best tool for all people. Usually, when pulling a weight, clinics will calculate a body mass index (or BMI). This tool was developed and tested on white cisgender men. It has not been updated in most cases to fit the needs of those among communities made up of additional races, ethnicities, genders, sexes, and more.

Sex educator Emily Nagoski has also highlighted the sexism inherent in anti-fat attitudes. This is true in greater society as well as in healthcare. That combines with issues such as racism, anti-LGBTQ+ attitudes, or otherwise relying on the ideals of white supremacy. As already highlighted, it is vital to keep these issues in mind. It’s much harder to ignore the ways inequity operates within public health and medicine if you’re conscious of situations such as this. Only after acknowledging a problem exists can we deal with it. Then, providers can work to rebuild trust within communities harmed by exclusion and oppression.

Race

When medical illustrations show cis women, they are generally “white, slim, and young.” The lack of diversity in medical images causes harm to patients in a way we will never fully grasp. Dawn Gibson, a long-time activist, knows this all too well. The Director of The Community Leadership Council at The National Pain Advocacy Center, Gibson has worked internationally to help others gain access to decent healthcare. In that time, she has met many patients whose health conditions have been dismissed or denied by providers. There are many factors, including unfamiliarity with these conditions, insurance, and outright bias.

Providers will also dismiss possible diagnoses by assuming a Black person like Gibson has no European ancestry. “On paper, my genealogy points to about 60% European ancestry. That’s clinically relevant. Still, day-to-day, they say ‘there goes a Black woman.'” This is indicative of a much larger problem – how we view race. Rhonda Rousey, Gibson explains, has an ancestor who was the first Black doctor in Oklahoma. That family passed into whiteness and, now, most will assume Rousey is a white woman. It just “shows you there’s nothing real about racial categories,” Gibson shares. 

Gibson has experienced this dismissal first-hand, from providers to researchers and beyond.

Gibson has Ankylosing Spondylitis (AS), a type of inflammatory arthritis focused primarily on the spine. Before the last few years, providers thought AS was especially rare to see outside of white cis men. There is a 9-year delay in diagnosis for women overall, per Dr. Young. When we add in a patient’s race as a factor, that delay gets even worse. Gibson has a whole network of patients whose providers did not believe Black women could get this condition. 

Many patients Gibson knows have gone decades without a proper diagnosis. In dermatology, providers get few if any examples of conditions on darker skin. Gibson knows too many patients who were told Black people don’t get psoriasis. Because of the delay in diagnosis, some of these patients waited decades to access treatments. To make matters worse, the idea that there are no Black patients with AS means there is no recruitment of Black people for studies and clinical trials. That then becomes a vicious cycle, perpetuating the idea that Black people do not get AS.

That denial extends into patient support spaces as well, a combination of perpetuating that cycle and white supremacy at work. Many people of color, but especially Black women, wind up being run out of these groups by a mixture of racism and white supremacy.

After years of sounding the alarm, providers are finally starting to research AS in Black women – with patients leading the charge. As of 2020, research has found that Black people have worse disease activity than their white counterparts. The Black community also deals with a larger number of additional health issues. In the end, that could explain part of why their disease activity is worse. That’s especially true when these health issues can be caused and influenced by systemic oppression and gatekeeping. Issues like a lack of access to care, distrust in the medical establishment, and even discrimination itself play big roles.

One example can be found in prostate cancer. Black men (and those of other genders who have a prostate) “are more likely to be diagnosed with prostate cancer and nearly 2.5 times more likely to die of the disease compared to non-Hispanic white men.” A 2019 study of more than 300,000 prostate cancer patients found that access to care and additional health issues played a major role in that statistic.

“The data show that black men don’t appear to intrinsically and biologically harbor more aggressive disease,” Spratt says. “They generally get fewer PSA screenings, are more likely to be diagnosed with later stage cancer, are less likely to have health insurance, have less access to high-quality care and other disparities that can be linked to a lower overall socioeconomic status.” (source)

The study suggested that these barriers were “likely rooted in complex socio-cultural inequities in the US.” We know from various other studies, too, that “Black people simply are not receiving the same quality of health care that their white counterparts receive.”

We know, too, that discrimination such as racism leads to inflammation in the body.

“If those genes remain active for an extended period of time, that can promote heart attacks, neurodegenerative diseases, and metastatic cancer,” says co-author Steve Cole of the University of California, Los Angeles… racism may account for as much as 50 percent of the heightened inflammation among African Americans, including those who were positive for HIV. (source)

Higher inflammation has been noted among other groups as well, such as those living in poverty. When we combine information and see how many Black people are also forced to live in poverty and facing other stressors, it’s easy to see why the idea of intersectionality is vital to these conversations.

How do we fix this?

White people often assume that representation among medical providers will fix the issue. “We’re not going to ‘Black doctor’ our way out of this,” Gibson says, and she’s right. That kind of thinking puts the responsibility back on underrepresented communities. Representation can’t fix this when systemic barriers exist, including lack of access to being underinsured to essentially healthcare deserts.

These barriers prevent many people from Black communities from even thinking about entering the field of medicine. We also know that police murder and imprison Black people – especially those who are disabled – at higher rates. Between that and the number of people forced to work multiple jobs due to economic racism and poverty, that leaves little time and energy for things like medical school. That doesn’t even count the costs!

The lack of representation in these spaces is purposeful. If you force people into a constant state of survival and gatekeep their access to help at every turn, you can keep power.

Some believe that inclusive resources, such as Black-focused dermatology textbooks, will fix this. When resources like these pop-up, their creators become the subject of news stories and interviews. That doesn’t always translate to impact, though. That awareness fades and folks go back to their everyday lives. Those same people ‘excited’ about these resources aren’t embarrassed or motivated enough to take real action, Gibson points out. Dr. Young encourages medical students and providers to think critically about previous findings. That includes everything they’ve been taught. Perhaps if more providers thought that way, they would have already examined claims like ‘Black women don’t get AS’ and found them inaccurate.

I grew up in a Mormon household. For those of you who don’t know, Mormons are a little obsessed with genealogy. I know a lot about my family history on my mom’s side, back into the 1500s. Along with that, I know a good bit about family health history. Many white people do not consider that to be something they’re lucky to access, but it is. Black people whose family members were stolen from their homes and enslaved do not have that information.  We have to see how slavery and racism have led to long-term health issues. Trauma can be passed down via genetics to future generations. We should be further along in acknowledging and dealing with this. Public health is only acknowledging it now, though.

With this in mind, I wonder how the continued harm that Gibson and her peers face will affect future generations?

Moving Forward

2020 saw a reinvigorated cry for change. Many who used to ignore or deny racism couldn’t any longer. Our national policies haven’t changed to meet where we are as a society, Gibson shares. This especially applies to the field of medicine. Back in March of this year, the Journal of the American Medical Association questioned if systemic racism even exists. Many institutions are only now starting to think about health equity work. This means they’re playing catch-up to not only learn the basics of equity but also terms that are new to them around race, ethnicity, gender, and more. On top of defensiveness, this also leads to a lot of mistakes. Those are bound to happen, sure, but it’s easy to see how people lose trust in these institutions – institutions that should know better by now.

“Perfection is a tool of white supremacy.” We know, logically, that perfection doesn’t exist. Once we see how “perfection” is used as a way to oppress, police, invalidate and justify violence against the vast majority of people, it’s even more important for us to defy standards of perfection. (source)

How do we move forward? Dr. Young believes we need better representation. That’s across the board, from textbooks to questions on board exams. “We need to move away from stereotypes and really represent the diversity of diseases,” she says. Dr. Young also believes she would have benefited from interacting with students earlier. She shares that patients “paint diseases in color that often medical school teaches in black and white.” Edwards agrees. They also suggest taking steps to be more inclusive, such as avoiding assuming pronouns.

Edwards would also love to see more non-gendered illustrations in textbooks. They shared that seeing variety in body shape is sorely needed. Improving these images can change how providers interact with a variety of people. ” I absolutely think our medical books should reflect our society,” they share.

Wanting more representation is great, but that would take time people here now may not have. As Gibson puts it, “If [the field of] medicine is such an important part of our society, why should I skulk around in the shadows?” 

Thinking back to trauma, Gibson wonders about “the long-term consequences of having to create this moment.” She adds, “We may have the highest understanding of disparities we’ve ever had.” While true, Gibson is also concerned it will get worse. “Right now, people are feeling something and will assume they did something with that.” None of this has translated to national policy, meaning the progress could disappear. If it does, Gibson wonders if things will be worse than before.

My Takeaways

Without working for better representation, there is no way for us to work towards a healthier future for every single one of us. The future of medicine – and the world – needs each of us to recognize the differences among us. We can celebrate some of these differences. Others we must work to correct, such as bigotry. Only then will we find our collective and mutual liberation.

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