As a Palestinian American Muslim, I am intimately familiar with the role labels play in shaping and forming an identity. When asked where I was from, because obviously I don’t “look” American (despite being born and living my entire life here), I once proudly responded Palestine only to be met with blank stares. I was trying to claim a country that for many doesn’t exist on their map of the world.
I mention this exchange to juxtapose the ease with which I used to check white on any demographic form. It was a habit I developed as the other options seemed even less applicable. It was a seemingly harmless oversimplification of my identity to fit into an existing category because there wasn’t one that fit me.
It wasn’t until I was a genetic counseling student that I became hyperaware of how problematic this oversimplification is. On paper, I was just another white/Caucasian, female, aspiring genetic counselor. I hesitated to identify as a minority when all my life I checked the box that identified me as part of the majority.
A clinical supervisor offered “oh, you are a religious minority,” but if it weren’t for wearing a hijab, it would be hard to identify what religion I followed. Even without the hijab, I would still have my Arabic name and speak a different language. However, the hijab was the piece of my identity people fixated on, again oversimplifying my identity.
While developing my thesis project, I wasn’t surprised to find a dearth of studies in the Journal of Genetic Counseling engaging Arab or Muslim populations. The burden of advocating for research or guidelines for informed practice within a population still often falls to members within that population. I struggled to make a case for engaging with Arab-Muslims as opposed to just Arab or just Muslim populations as there is a prevalent misconception that because the culture and religion overlap, there isn’t a strong need to account for the way each may influence the decision-making process. While my committee was receptive, the conversation was revisited multiple times throughout the process.
The discussion highlighted a privilege that I was never afforded: not being asked to divorce some or all my identity in the name of simplification. For simplicity, I complied with being labeled part of a majority when ultimately, I am from an invisible minority.
Upon reflection, I find myself wondering what other invisible minorities have been largely unaccounted for in research and how that may impact the patient experience. When counseling an Arab patient from Egypt, what would you quote as the carrier frequency for sickle cell anemia or cystic fibrosis? I find myself overwhelmed by the research needed to develop more informed guidelines for serving patients from understudied populations but am honored to be in a profession that empowers me to be an advocate for these causes.