Racism, Viruses and IBD

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It’s been a long, long summer. It began with the murder of Breonna Taylor, the threat to birdwatcher Chris Cooper’s life, the murder of George Floyd, the shooting of Jakob Blake. In Portland, where I live, we’ve had demonstrations, that only ended when the wildfires approached. At one point we packed our bags, to be ready to leave at a moment’s notice. Now that it’s fall, the pandemic that was so conveniently ignored during the summer is back, with a vengeance. A disease that disproportionately kills People of Color.

I have been re-writing this post since June 1st. I was at a loss for words. What is there to say to people who experience racism on a daily base that will be comforting? I read all of the statements from stores, schools, universities, on how they stand with the Black Community, and how Black Lives Matter. As always, we’re good at making grand gestures, and don’t follow up. The next step would be to look inwards, and see how I am complicit. Not if, because, as a white, educated, middle-class woman, even if I wasn’t raised here, I am still complicit.

One such way, is ignorance. For a long time, I was told that IBD is apolitical. It most certainly isn’t. First off, it’s 2020, and if you are still apolitical, you haven’t been paying attention (which, by the way, is a privilege). Nothing is ever not political. The moment you say “yes” or “no” to something, you’re making a political decision. The topic of insurance, the ACA, is a topic for another post. But the medical system, as it is, is as everything else, contaminated by racism.

With IBD, it starts with representation. Gastroenterology with 56% of doctors identifying as white and 68.6% as male is not a very diverse profession to begin with. The rest breaks down at 24.3% Asian, 10% African American, and the rest is “other”. Why is this important? Because representation matters. This may sound like a cliche, and or you think it only refers to the entertainment industry, but it’s not.  This lack of representation has severe consequences.

Historically, the medical community hasn’t exactly been inviting or kind to black patients.  I could mention the  Tuskegee Syphillis Study, or the HeLa Cells.  Even today, racist stereotypes can be found– in “Doing Harm” Maya Duysenberry describes that a number of medical students believed that black skin was thicker and that Black people are often thought to be more pain resistant- resulting in terrible mismanagement of their treatment.

Patients of Color with IBD and their needs also have been mostly overlooked, as IBD is considered a “white disease”. It’s a chicken and egg problem really- if you consider something a “white disease”, then you don’t bother studying another demographic group, leading to you declaring that “BIPOC don’t get Crohn’s or Colitis”. Most studies that seriously began to look at BIPOC patients were started as late as the early 2000’s, with some still going on.  Gaylin Henderson from the Gutless and Glamorous blog (and foundation) says: “As an African-American, diagnosed in 1998 — I didn’t know anyone that looked like me with Crohn’s disease,” and she remembers how her symptoms were dismissed for a long time. Some studies suggest that Crohn’s and Colitis in BIPOC patients often present with different symptoms than white patients.

Of course, these issues are connected to larger issues, such as the general lack of access of BIPOC to adequate healthcare.

This summer, I saw a lot of T-shirts and posters declaring that “racism is the real virus”. I partially agree: Just like a virus, racism permeates everything, from the way we’re treated by police to the way we get treated by our doctors.  And just like a virus, we could have listened to Black people, who have been telling us for years and years, we could have tried to contain and eradicate, but we pay attention to it, when we really cannot overlook it. Yet, it is necessary to admit to complicity and actively try and change things. How? Voting would be one thing. Not just every four years, but everywhere from the local school board to city council, toBLM gubernatorial elections. Show up. Educate yourselves, there are plenty of reading lists and blogs out there that can guide you. Reach out to local communities and ask how to help.

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