Almost exactly one year ago, I was diagnosed with Crohn’s disease after a grueling few months of trial-and-error diagnoses by my medical team. Truth be told, the news was a shock to my family, but not for the reasons you may first think of.
In my mother tongue, there is no widely accepted translation for “Crohn’s disease,” not to mention “Inflammatory Bowel Disease.” In a way, my Asian American identity is one reason why it took so long for me to receive my diagnosis of Crohn’s disease in the first place; my gastroenterologist had not previously thought to test for a condition that was thought to be more common in Caucasians or Ashkenazi Jews. Even amidst official resources from various foundations, it is admittedly difficult to find Asian representation within the IBD community.
As a disabled Korean American woman, I experience IBD through the lens of multiple marginalized identities. At the intersection of ability, ethnicity, and gender lies an incredibly complex set of conversations that society has yet to fully parse out and create space for.
While chronically ill and disabled folks found themselves facing a morphing status quo that was being overturned by a worldwide pandemic, their fight for accessibility and accommodations was simultaneously accompanied by embroiled racial justice initiatives. The Health Advocacy Summit has written extensively on how racism is a public health crisis, underscoring the need to include all marginalized communities in our activism efforts.
Personally speaking, I came face-to-face with the inevitable intersectionality of advocacy in the fight against anti-Asian hate. In the wake of 2020, the United States began to witness an alarming surge in anti-Asian racism that quickly escalated to violence and hate crimes. As a chronically ill patient, I knew exactly how it felt for an entire community to be marginalized, vulnerable, and at-risk, making it all the more urgent for me and my fellow student leaders to speak up against these acts of hate.
The intersectionality of these two identities is rarely discussed, yet they both mold and inform the other. My diet, my language, and my roots are so intimately tied to my Korean heritage, and in turn, my Asian American identity shapes the way I understand my chronic illness. As Sandy Ho wrote in Alice Wong’s Disability Visibility, “taking up space as a disabled person is always revolutionary,” but especially in the ways in which traditional East Asian attitudes often conflict with the mindset of the evolving American immigrant.
The same goes for the ways in which Asian culture influences food options for those with IBD. Nandani Bhanot, another 2021 CCYAN Fellow, wrote about how IBD diets and treatments are rarely created with people of color (POC) in mind, alluding to the lack of content on modified diets with traditionally Asian dishes.
Moving forward, I believe that my journey with Crohn’s disease and Asian American advocacy are not unrelated, but in fact, closely tied. Perhaps the best next step our IBD community can take is to create space for disabled POC, uplifting their stories and amplifying their voices.