The Diabetes Online Community, White Privilege & #BlackLivesMatter | Avocados & Glitter

White Privilege by Bart Everson
White Privilege by Bart Everson

I’m afraid to post this. Even as I was writing it, I was deliberating about whether or not I would share it. I can’t decide if I’m more fearful of a lack of response, especially in light of the time and care I have invested in writing this, or if I’m fearful of antagonistic responses. After all, white people are resistant to discussions about racial justice… I say as a white person who is working to overcome my own white fragility, which DiAngelo (2011) defines as “a state in which even a minimum amount of racial stress becomes intolerable, triggering a range of defensive moves. These moves include the outward display of emotions such as anger, fear, and guilt, and behaviors such as argumentation, silence, and leaving the stress-inducing situation. These behaviors, in turn, function to reinstate white racial equilibrium.” I don’t want to maintain white racial equilibrium though, so here goes…

I think about privilege a lot lately. I’m fascinated by how we are each differently positioned, privileged in some ways, perhaps less so in other ways. A linear model is one way to imagine privilege, each person situated somewhere on a spectrum. I’m not convinced that captures the complexity of privilege though, so I imagine something 3-dimensional, vaguely reminiscent of a solar system, never static, with intersecting shifting orbits of race, age, ability, sexual identity, gender, class, size, species, geography, and everything that makes each of us who we are.

I think about my privilege a lot lately. I’m a middle aged, middle class white woman. I have a mostly invisible disability – type 1 diabetes (T1D) – so I appear able-bodied, even though I don’t always feel able-bodied, and managing my health consumes considerable effort and financial resources. I’m bisexual, but married to a man. I’m taller and thinner than the average American woman. I have a history of mental illness, but thankfully, I had access to treatment with a positive outcome. I have an advanced degree, and I’m pursuing a doctorate. I live in the Philadelphia metropolitan area, so I have access to services and resources. All of this is to say that I’m considerably privileged. This affects the choices available to me, how others perceive me, and how I perceive and function in the world. These are my filters through which I have thought about the discussion that follows.

My recognition and appreciation of privilege is heightened now, but I have long been sensitive to the vast inequities in the world. To me, “life isn’t fair,” is a cheap platitude intended to dismiss our responsibility to examine why inequity exists, and do something tangible about it. In my late teens, I came to see myself as an anti-racist feminist, without knowing anything substantial about the theories behind race and feminism. More recently, I’ve had opportunities to learn about forms of systemic oppression, and how they are inextricably linked. I’m now aware of a multitude of ways that beings are marginalized based on race, nationality, age, size, sexual identity, gender identity, ability, class, geography, religion (or lack thereof), and species. This learning process has been – and continues to be – transformative in the most surprising ways.

Although I’ve identified as anti-racist since my youth, I now see that my understanding of racism was shallow and fundamentally flawed. As a liberal anti-racist, I proclaimed myself “colorblind” because that’s what white liberals living in the post-Civil Rights, supposedly post-racism era did. Without anyone to challenge me, and without pursuing information that would have contradicted my perception, I felt like I knew all there was to know about racism. I mean, where does one go after post-racism, right? I never stopped to consider how incoherent it was for racism to exist in a supposedly post-racist society. I didn’t have to think about it though. My whiteness afforded me that privilege.

A few events transpired that shook me loose from that stagnation. I began my doctoral program (more privilege…), where I worked with colleagues of different nationalities and different races, and had reading assignments specifically about race and culture. I was exposed to the idea of “otherization,” the process of regarding someone(s) as different which creates an us/them dichotomy, and enables us to treat them differently. My understanding of otherization of humans opened my eyes to otherizaion and exploitation of animals, which compelled me to adopt veganism. Once divorced from my investment in rationalizing exploitation of animals, and with greater sensitivity to the enculturated ways animals are oppressed, I circled back to re-examine the enculturated ways that humans oppress other humans who are less privileged.

In the midst of these realizations, #BlackLivesMatter (BLM) was gaining traction. Initially, I didn’t know what to make of it, but I wanted to understand it. I was fortunate to have a friend who has been actively involved in BLM though, and he shared a lot of BLM content that intrigued and challenged me. I also discovered vegan activists whose work was intersectional, examining the connections between animal rights and human rights (problematic terminology since humans are animals, but that’s beyond the scope of this discussion). I’ve most notably been influenced by the Sistah Vegan Project, its founder, Dr. Amie Breeze Harper, whose revelatory work is grounded in critical race, feminist, and food justice theory, and the many people who participate in discussion in the Sistah Vegan community.

These influences transformed my perception of BLM. Black people engaging in BLM are compelled because the racially-influenced violence against them is a crisis. As my perception shifted to comprehend racism as a crisis, I began to feel the urgency of creating a society that isn’t killing and otherwise harming people based on their blackness or brownness. I came to recognize that it was my white privilege that allowed me to be a casual observer, a phenomenon most hilariously captured in this satirical piece from Reductress, End Your Summer on a Relaxing Note by Ignoring Systemic Racism, which includes suggestions like meditation: “It’s good to start by reciting a mantra over and over, such as ‘I am a good person’ or ‘I am not a racist.’ You’ll emerge feeling refreshed and validated, to the delight of your all-white social circle!” It’s a stretch to even call this satire because I’m convinced this is happening all around me.

Increasingly, each incident of a POC dying at the hands of police affects me more deeply. That’s not to say that I wasn’t shocked and saddened by earlier deaths, but I recognize each death as part of a larger crisis now, rather than isolated, unrelated events. Of note, Sandra Bland’s death really shook me, perhaps because I’ve been in a similar position – a woman driving in Texas getting pulled over for a minor driving offense. Only, I’m white, so when I was pulled over for a minor driving offense in rural Texas, my worst fear was getting a ticket. Not getting pulled out of the car. Not getting slammed to the ground. Not getting taken to jail. And sure as shit, not dying in a jail cell.

Michael Robinson
Michael Robinson

Last week, news of Michael Robinson’s death emerged. Michael Robinson was arrested and jailed for not keeping up with child support payments. He had T1D, managed with MDI (multiple daily injections), and was denied medical treatment. According to reports, he repeatedly demanded medical treatment, but was ignored. A PWD (person with diabetes), typically has a fasting BG (blood glucose) goal of 80-120, give or take. The complexity of balancing food, activity and insulin in order to be forever aiming for that narrow BG range means that BG levels drift out of range frequently. That’s not to mention the almost countless variables that are generally outside of a PWD’s control that can also affect BG, such as stress hormones, and insulin absorption at any given injection/infusion site. Having a “high” BG in the 200’s is annoying business-as-usual for people with T1D, in which case, we take extra insulin to bring down BG level. Higher BG’s are less frequent and more dangerous. If it gets ~500+, there is an immediate medical danger, which can require emergency treatment if BG isn’t responding to home intervention, and symptoms such as nausea, vomiting, or loss of consciousness develop. All of this information is to provide some context so those unfamiliar with BG management will understand the horror I felt when I read that Michael’s BG was 2500 when he finally received medical intervention.

To my knowledge, the DOC (diabetes online community) has not had significant dialogue about the relationship between BLM and diabetes. In my experience, the DOC culture dictates that diabetes is our thing, and everything else is your thing. Historically, the them in the us/them dichotomy is another disease, for instance, cancer, which manifests itself as frustration that one disease generates more media attention, more donation, more research funding, more sympathy, etc. than diabetes, which is par for the course in our capitalistic society. Many people with T1D don’t even want to be associated with type 2 diabetes, and won’t fund raise or donate to the American Diabetes Association because ADA also supports people with T2D. This same us/them framework is now at play with BLM, and the aversion to “mixing” issues informs the response to the assertion that Robinson died from ableism compounded by racism.

One could dispute my observation that most of the DOC has disregarded BLM, but consider the following. It is ironic that the DOC will occasionally collude in rage when someone or some entity misrepresents diabetes, and it’s not unusual for people to express frustration that others don’t know or care about diabetes, but how is the DOC building bridges to other causes that are worthy of outrage? The DOC wants everyone to care and be knowledgeable about diabetes, but suggest they learn about something like racial justice, and how that specifically relates to living with diabetes, and they scoff. To add to the irony, T2D is a scourge among people of color, so diabetes advocacy should be inextricably linked to BLM. In fact, if diabetes advocates and BLM activists collaborated with vegan activists, we could be a model for dismantling racism, ableism, and carnism (the ideology that animals exist for humans to use). For those people whose diabetes advocacy is solely focused on T1D, I encourage you to consider that such a collaborative effort would also benefit people with T1D since the larger conversation about diabetes could shift, and with a decrease in T2D incidence, resources for treatment and research could be redistributed.

Collaborative aspirations aside, the current reality is that the response to Michael Robinson’s death has gone far to reinforce my impression that the DOC perceives BLM as irrelevant. The difficulty of discussing comments that were offered in these discussions is that some of the commenters are my friends, or friends of friends – great people with huge hearts whose friendships I value. That being the case, I’ve tried to capture the essence of the comments without direct quotes to preserve anonymity.

I want to preface by saying that the conversation was not one-sided. Some people expressed committment to the idea that Robinson’s death was a result of diabetes discrimination compounded by racism. There were also a number of tempered responses, recognizing that one can’t definitively know either way how race impacted his treatment in jail, but that it probably played a role. However others vehemently denied that race had anything to do with Robinson’s death. It was suggested that the only cause of Robinson’s death was jailers’ lack of knowledge about diabetes, nothing more, nothing less. To reinforce this position, a list of names of individuals with diabetes, who were mostly white, and had suffered injury or death in police custody was offered. Others agreed, emphasizing that PWD of all races are harmed in police custody, invalidating that Robinson’s blackness was a contributing factor to his death. Of course, this is the equivalent of claiming #AllLivesMatter in response to #BlackLivesMatter, a critique of which is offered here, here, here, and many other places. My position was that this is not a zero-sum game in which Robinson’s death earns 100 attention tokens that have to be divided, or not, between diabetes and racism. People can recognize both, without denying or diminishing the effort to address one or the other. The final outcome of that conversation was essentially, “agree to disagree,” falling short of advancing justice, which is why I was compelled to examine this issue here.

What some people do not know, or are disregarding is that the family, who created Facebook and GoFundMe pages, is committed to the idea that Robinson’s blackness contributed to his death, and this is a #BlackLivesMatter issue. Isn’t it likely that Robinson almost certainly experienced his mistreatment in jail as a manifestation of racism? If he could magically send us a signed affidavit from beyond, stating as much, I’m certain that not only would many white people still deny that race was a factor, since black people have consistently been denied the authority to interpret and narrate their own experience, but I assert that they would likely call Robinson a racist for claiming race contributed to his death!

To emphasize the point that white people are denying black people’s interpretations of their own experience, in another online discussion, a friend shared that she had participated in a conversation in which people questioned whether the details of the story were even true. She suggested that had it been a young white woman who had died, the details wouldn’t even be doubted. After all, white people are experts on interpreting history, right? We can look no further than Columbus Day, Thanksgiving, and the continued whitewashing of US history textbooks to see what experts we are. A couple of days later, I asked this friend for a link to the discussion because I wanted to read it in its entirety for the sake of offering more comprehensive analysis here. She told me the discussion had been deleted by the group admin, presumably because it became heated. Whatever the motive for deleting the discussion, the end result is maintaining the comfort of white people who become defensive when faced with questions about racism, and preserving the white narrative that there’s no racism to see here.

I also have to thank another friend for her astute observation that the DOC failed to respond to Robinson’s death in the same way it responds when anyone else with T!D dies. Normally, my Facebook feed will be filled with images of lighted blue candles to honor the loss of someone with T1D. Many people will change their profile pictures to blue candles, and many people will share the person’s story in an effort to raise awareness among their friends and family about the dangers of T1D. I have to credit one more friend who created and shared a meme to honor Robinson. It’s significant that this friend’s family is mixed race though. As far as I could tell, almost no one shared the meme. For a community in which shit goes viral when people care (remember the Crossfit nonsense?), why should I not conclude that no one cares about Robinson? Even people who deny race was a factor, and insisted his cause of death as discrimination against diabetes, didn’t write blog posts, didn’t share memes, didn’t do much of anything other than argue that race was irrelevant.

Oakland #blacklivesmatter by akaruna
Oakland #blacklivesmatter by akaruna

It is important to note that the discussion participants were almost all white. Would it have been valuable to hear the perspectives of more people of color, especially black people? Absolutely. Am I going to solicit the black people I know in the DOC to get those perspectives? Hell, no. It’s not their responsibility to call out every racial microaggression on the internet. By listening/reading, and judiciously participating in predominantly black online spaces, my intention is to take what I’ve learned back to white spaces, and try to decenter the white perspective, challenge white fragility, and disrupt white privilege, in as much as I’m able as a white person. It might not be much in the grand scheme of things, but it’s something positive I can do to support #BlackLivesMatter.

My primary intention here was to examine DOC conversations, as I experienced them, or as they were described to me, to expose how racism, specifically anti-blackness emerged in the white-centered commentary on Michael Robinson’s death. I thought it valuable to explore my privilege, and evolution from unquestioning, “colorblind,” self-perceived anti-racist, to more critical, reflective anti-racist who has more questions than answers, and is quick to look for black-centered perspectives on issues since black people are the authority on their experiences. This is a work in progress for me. The greatest obstacle to being a supportive ally to #BlackLivesMatter is thinking I have it figured it out. After all, how can I be an expert on something I haven’t lived? I share this post as a way of inviting white friends to start listening and questioning, and to seek out black-centered perspectives rather than imposing white-centered interpretations.

One of the ideas that it seems some white people struggle to comprehend is the insidious nature of systemic racism, and systemic oppression in general. Our privilege informs our perspective, and we can learn to recognize when that filter is distorting our view. Americans live in a country that was literally built on the backs of people of color, but since it’s all we know, we fail to recognize its influence. We can’t see the forest for the trees. Racism is not just scary white men in white hoods burning crosses, or Confederate flag bumper stickers. Its less obvious manifestations are vague, and sometimes difficult to extract from complicated real world situations, but that doesn’t relieve white people of the responsibility to at least try to identify it. If we don’t, racism will persist. If we balk at the very notion that we, the white liberals, might be saying and doing racist things, racism will persist. If we insist on dictating to black people what is and is not racism, racism will persist. Our black and brown family members, friends, neighbors, and colleagues’ lives are in the balance, so it’s time to stop denying, start looking in the mirror, and maybe start by acknowledging that Michael Robinson was a victim of diabetes discrimination compounded by racism.

The DOC’s racial bias is a reflection of the larger healthcare culture, which emerged from a jaw-dropping history of racism in healthcare, and exists within a society that is characterized by racial bias. In my experience, the DOC is not racist in an epithet-slinging way, but until we begin to identify, discuss and call out the less overt manifestations of racism, we will be perpetuating it. I believe the DOC is capable of this too based on the outstanding work of highly regarded Hispanic diabetes advocates who have created community spaces for those who speak Spanish. In this regard, the DOC has demonstrated a commitment to inclusivity. That being said, creating separate spaces for people who speak Spanish is different from creating spaces that feel accessible to black people.

Earlier I said that I have more questions than answers about race. Would it be useful to have designated spaces for people who are black and have diabetes? Why does there appear to be a persistent shortage of black voices in the DOC? Is it only the responsibility of black diabetes advocates to address racism in the DOC? If black people are under-represented in the DOC – as they seem to be – are white people absolved of addressing racism? Isn’t it a vicious cycle – lack of black voices to address racism perpetuates racism which discourages black voices? How do we extract ourselves from that vicious cycle? What is it about the DOC that it has become a space with so few black voices? What would it be like to have a diabetes advocacy event (IRL or online) that was focused on the black experience, but all advocates were encouraged to join to learn from and celebrate black voices on diabetes? In regards to #BlackLivesMatter, other questions emerge. What would it look like for diabetes advocates to collectively support BLM? What would it be like for diabetes advocates to engage with BLM protests? How could diabetes advocacy be enhanced by engaging with BLM?

I am not suggesting there are obvious or easy answers to these questions. I am suggesting that these are important questions though, and the difficulty of addressing them is not an excuse to ignore them. As long as there is denial that racism is a problem for black people with diabetes, as long as there is denial that racism is a problem in healthcare, and thus, a problem in the DOC, then racism will continue, in the DOC, in healthcare, and everywhere.

MLK March in Oakland, CA by Daniel Arauz
MLK March in Oakland, CA by Daniel Arauz

Disclaimer: I have made generalizations here. I have discussed a community made of individuals, so naturally, there are outliers. Not everyone in the DOC is 100% diabetes, 100% of the time. Many friends have been inspiring supporters of LGBTQ rights, some identify as feminists, and a few have shared BLM content. My overall impression though, is that the DOC is not connecting to BLM, with the acknowledgement that I can’t possibly keep track of everyone’s social media activity. It’s also relevant that most of my DOC friends are white.