In mid-February, thousands flocked to the opening of Black Panther, a highly anticipated film for a multitude of reasons. The most salient of these is its depiction of an African king as Marvel’s and cinematic screen’s first culturally-affirming black superhero. In fact, Black Panther’s success is due to its emergence as a counter-narrative to painful and dysfunctional representations of black life. By normalizing the presence of black royals, diplomats, and scientists — Black Panther breaks the mold. In reflecting on the importance of Black Panther and its bold and positive portrayals of black bodies, I shift my attention to the online diabetes community. The buzz surrounding Black Panther has sparked conversation around the value of representation within and beyond the cinematic sphere. And though it may seem like a stretch and a disjointed connection, it’s also led me to wonder about the power of diverse and positive portrayals of people living with chronic disease, specifically diabetes.
The power of Black Panther is in its ability to aid black and brown people’s imagination of themselves in spaces where they have previously not existed. Black Panther attests to the power of representation done right.
These alternative outcomes birthed by an empowering depiction of blacks on screen led me to envision an alternate reality within the diabetes community as well. Specifically, it made me wonder — what impact would the online diabetes community have if it espoused this rhetoric of diversity and committed itself to highlighting the stories of black and brown diabetics fighting to live well with this disease? How can these diabetes platforms work to counteract the negative associations between blackness and diabetes?
To be transparent, I am often disheartened by the homogenous nature of online diabetes communities. Those who are most vocal about their daily struggles of life with diabetes do not look like me. Certainly, the incidence of type-1 diabetes is higher among non-Hispanic whites than other populations of color. But, when we factor in the presence of Type 2 diabetes, we find that the overall prevalence of diabetes and its adverse effects are most rampant in communities of color. Blacks are twice as likely to be diagnosed with diabetes than non-Hispanic whites and are also twice as likely to die from the disease. No wonder my perception of what it means to be black and diabetic is discouraging at times. I’ve heard and been touched by so many stories of diabetic complications and premature death.
When I look at those bold advocates who shamelessly share their stories, I know they are not to blame for the absence of voices of color within the online diabetes space. Rather, a combination of lived experiences coupled with systemic and structural barriers, like social, economic, cultural and environmental ones—help explain the absence of black voices on the web. For some, a history of medical racism (experimentation on black bodies and the devaluing of black pain), has resulted in feelings of mistrust and disregard for medical professionals. Lack of access to quality health care facilities or affordable health care translates to reduced opportunities for preventative care. Structural barriers including unreliable transportation and the pervasiveness of food deserts within communities of color, coupled with differences in cultural views and habits — e.g., health as a private matter, denial, hope in spiritual healing — result in dismal outcomes. Furthermore, technological and health illiteracy, lack of internet access and a failure to view social networks as more than a tool for surface-level chatter, can also explain the perceived absence of black and brown people sharing their stories of living well with chronic disease and diabetes on social platforms.
When considering diabetes outcomes, many of the aforementioned factors contribute to existing racial disparities. They can also explain why we don’t see more people of color talking openly about their diabetes. If various social, cultural or structural factors, lead me to struggle with diabetes “management,” or if the health care system or medical professionals leave me feeling disempowered and uninformed — I may wonder, who am I to take up space within the online diabetes community? What benefit does speaking candidly about my disease bring to me? All of this has made me wonder — what can we do to increase the visibility of people of color on online diabetes platforms? What can we do to encourage them to speak more openly about their experience?
At this juncture, I have two suggestions. My first is to encourage online health communities, diabetes advocacy groups and health care systems to be more intentional about seeking out and encouraging the narratives of people of color. Do you know a black or brown diabetic? If so, confer with them, invite them into your advocacy space and ask them about their network! The same way I peruse Instagram and Facebook nightly for faces that look like mine, is the same way these groups and organizations can employ diversity and inclusion managers and open up their leadership structure to more people of color (not just the token minority board member).
It is only through intention that we can ensure more representative diabetes platforms that speak to the far-reaching impact of this disease and the diverse experiences of those touched by it.
My second suggestion is for those black and brown diabetics who are shamelessly telling their stories — continue to do so, family! And as you share, encourage someone else to do the same. By spreading positive narratives of individuals of color striving to manage their diabetes, we are working to counteract the adverse relationship between diabetes and certain marginalized communities. By putting ourselves on display, we are creating a future where to be black and live well with diabetes is normal, where a diabetes diagnosis does not equate to sure premature death or unfortunate complications. Just as in Black Panther, whether intentionally or not, black and brown advocates are working to imagine ourselves in a space where we have previously not existed: healthy and well, in the context of diabetes.
Ariel Lawrence is a patient with diabetes who blogs at Just A Little Suga’.
Image credit: Shutterstock.com
