The Diabetes Online Community, White Privilege & #BlackLivesMatter

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.

13 thoughts on “The Diabetes Online Community, White Privilege & #BlackLivesMatter

  1. SO MUCH here. SO MUCH.

    It’s heavy and I’m so glad this wasn’t a short piece because you had to connect many dots for me…I’m still reading and processing, but so glad you’ve published this for me to come back to and start to absorb.

    Love you.

  2. I have been struggling with my own thoughts on privilege, BLM and the general state of our nation as it relates to rights (and wrongs). This piece you have so eloquently written has given me so much to think about. It touches a nerve. It allows me to think more deeply about subjects that are difficult. It impresses me. Thank you for writing it… and sharing it.

  3. Excellent and thought provoking.

    I too lack obvious and easy answers. I value the observation on generalization. And all of that leaves me both thinking and at a loss and while not comfortable that may be a useful place to be.


  4. Great article!

    I think part of the issue with the DOC is that, unlike the other online communities I engage with, such as the vegan online community and the anti-racist/BLM online communities, there is nothing ideological that unites us, and there is nothing that might assure a higher level of, well, intelligence. The other two communities require a person to think and care. Being diabetic doesn’t. That just strikes at random, despite your level of empathy, wisdom, intelligence, etc. In diabetes groups, I’m not even allowed to say I’m vegan without being kicked out. Just saying you’re doing anything other than low carb is not allowed. Frankly, I feel kicked out of the DOC.

    I especially liked this part of your essay: ” 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.”

    I really agree with how these movements should converge and it never occurred to me before both that the diabetes community and the BLM movement intersect so strongly and also it never occurred to me how T1D’s being less biased against T2D’s and instead helping, along with the vegan community, to reduce the occurrence of T2D, would actually help type 1 diabetics.

    So glad to have found your blog. I’m also a type 1 vegan who is from the Philadelphia area (though I live in Oakland, CA now).

    1. Melissa – I just made a similar comment on Facebook. I’m also a philly to Oakland transplant – let’s be in touch!

    2. Oooh…Vegan wannabe here (vegetarian at the moment) with T1d in Oakland too. We should have a party.

      The “diabetes doesn’t require thought” idea is a new concept I have never thought about. “Membership” in the conversation about other issues does. This post (and now the comments) are really blowing my mind.

  5. Wow, what a lot of material you’ve covered — and there’s no way I can respond to it all in this comment. But before I attempt to tackle a few of them, let me commend you on your courageousness in bringing the topic up. I’m sure it wasn’t easy, and I also can’t imagine how much time went into the thought process.

    One thing I’ve noticed about the DOC is that there is a sense of “gang mentality”. What I mean by that is if one of us expresses outrage over something — anything — then nearly everyone else follows. If one of us comes up with an idea, everyone rallies in support no matter how good or bad it is (how about we designate an #InstagramYourInsulin day? I’m sure we’ll get hundreds of participants). And we do it blindly, following without giving it much thought. The early endorsers of the CrossFit rage exemplify this perfectly — until someone pointed out how the anger was driving a wedge between T1D and T2D; then the collective, blind rage was about that wedge between the two types.

    Perhaps the story of Michael Robinson didn’t garner that much attention because the headline of the news article (the one I saw, anyway) made it primarily about race, not about diabetes, and therefore was thought to be out of the DOC’s jurisdiction. Perhaps, as you noted, there are so many varied theories on the topic that nobody was comfortable stepping up and declaring “It was diabetes ignorance!” and/or “It was racially motivated!” The one reference I saw to the post in my Facebook feed was initially posted without commentary (though many comments followed). Nobody led the march.

    Admittedly, nor did I. My personal belief is that if you actively protest everything, your voice loses impact. You become branded as a “complainer”. Similarly, taking something that’s already been said, and repeating it to those same folks who heard it the first time, adds no value. It’s why I didn’t chime in on the CrossFit thing at all. In fact, I’m not very vocal about anything. More than anyone, I advocate for myself, and that sets an example that hopefully helps others. But I don’t grandstand.

    So, in a passive-aggressive sort of manner, I commented on that thread, fully recognizing that the original poster made it viewable to the world and that it would then likely show up in my friends’ feeds — particularly a Facebook (and grade-school through high-school) friend of mine who is very vocal about racial discrimination issues — hoping he would pick it up. As a black kid growing up in a white neighborhood, he is very aware of and familiar with the realities of discrimination. As a white kind from a white neighborhood, I was oblivious to them — and though I’ve learned a lot from his Facebook postings (which continue to surprise me, and helped to formulate the belief I shared in response to that Michael Robinson post), I still don’t consider myself “qualified” to opine on such issues of race alone.

    For me to say anything about racial injustices would come across as disingenuous — just as it would be lacking a bit of credibility if President Obama build a campaign around the plight of the Jews during World War II. Learning from books and anecdotes is admirable and the facts could be correct, but it’s just not the same as when it’s your own family that directly experiences the tragedy and loss. So if someone else can deliver a message more effectively than I can, I will gladly yield the podium to them so that they can make that statement.

    Which brings us back to the Michael Robinson story. The “family” that understands the diabetes angle is the DOC. The “family” that understands the racial angle is BLM. I don’t think that means the DOC lacks concern for people of color, just as I don’t think blacks have no concern for people with diabetes. The paths indeed intersect, but racial discrimination and medical ignorance are still two different battles – they just seemingly happened to occur concurrently in this case. It makes sense that individuals tend to wage the battles around which they are most familiar. I’m not sure if your concern is the lack of acknowledgement of the other battle, or the lack of support of the other battle. But sometimes, if you attempt to fight someone else’s battle for them and are ill-prepared to do so, you may end up doing more harm than good.

    And with that, I completely lost track on where I was going with this comment, so I’d best end it right here.

  6. Thanks so much for posting this. Let’s turn it into a signal boost for Michael Robinson. Let’s use the DOC mob mentality (for better or for worse, it does exist as you point out) and turn on people’s outrage. I know….some aren’t convinced. But others could be. I’ve learned about racism and white privilege by talking and learning with others…..maybe by forging ahead and talking more about Michael Robinson and others like him we can change at least a few hearts and minds. And hopefully, find justice for his family. And hopefully….be part of the building blocks that dismantle the unjust systems we have and start building new ones.

    It’s hard. In NYC a black man was unjustly punished for putting his leg up on a subway seat to inject (I say punished because I can’t remember if he was arrested or ticketed….in any case, an outsized penalty for a technically-illegal-but-who-cares-and-besides-it’s-medical situation). This caused rifts in the NYC diabetes community. It’s uncomfortable, so thanks for taking the plunge. You’ve inspired and reminded me to talk about this more. Heaven knows the DOC isn’t united in any way except for our connection to diabetes…..but I think we can rally for intersectionality amongst at least some of us!

    On a related note, I would be interested to learn more about the practicalities of veganism and T1D management. Is your typical diet high carb? What do you do for snacks?

  7. I stand united with all who believe this was a horrible and brutal CRIME. I will also agree that there was prejudice in Pemiscot County Jail that weekend, but against people who the Correctional Officers felt were less than them.
    A white man, was found dead in his cell in this EXACT jail early in July of this year. He reported seizures, and was not given medical attention.
    I am involved with the white and black race and it saddens me, that the attention will be taken away from the COMPLETE prejudice of this jail and it’s employees simply because noone feels the need to include the white inmate that met the same demise.

  8. I nodded the whole way through this. (Also, I wished for just an ounce of your ability to articulate SO well)

    “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.”

    It is ironic. I have long thought about this and talked about it with my husband. It’s partly why I stopped participating in the DOC because of it. I got tired. Really? We should all apparently know all about cancer and all the other diseases out there because we seem to be demanding people know all about diabetes. Maybe the only way is to be consistent with integrity and to be open to people’s feelings and views in the same way we’d like them to be open to ours. It seems intuitive that that would create the conditions we want-more people supporting our cause. And yet, we unknowingly push people back into their own corners saying, “Geez, I wonder if all people with diabetes are so angry?”

    You know, I have had 4 different people email me to let me know they were pleasantly surprised by me-a “latina”. I had two people comment on how my southern accent threw them for a loop because they imagined I wouldn’t have very good English. Another person said I was “smart for a Spanish person”. Another said, I wrote well for someone who wasn’t born in the US. I once heard a prominent DOC person say the DOC doesn’t have a racist bone while others agreed. I let out a big sigh. I don’t even now if I have experienced racism. But, in those instances I certainly had to put a wall up for my self-esteem which was admittedly jostled.

    What you are talking about regarding white fragility and privilege doesn’t even escape someone like me, who has a black mom, and several siblings with darker skin than my own. The intimacy I have with these loved family members does not exclude me from experiencing white privilege nor from white fragility. I talked about that a while back with someone who emailed me because they didn’t have any black friends and they wanted to know what is was like for a black person in a specific scenario. They asked me because I have a black mom. I was shocked because, how would I know? I don’t have that experience and therefore cannot speak to it. You want to know what it’s like to have a black mom? Fine, then, I can share but that’s the extent of what I can share because I don’t walk around in my mom’s shoes, just next to them occasionally. I don’t even share experiences with my darker skinned siblings and I can’t speak for them either.

    My brown skinned sibling, a brother with type 1 diabetes who is only a year younger than myself just spent a month in jail. I can’t tell you how terrified I was the entire time. I did all I could to make sure he was getting the care he deserved. Someone casually mentioned to me that he shouldn’t have put himself there in the first place. And suddenly, I thought about how if he died, as others really have, some people might shrug and say that he just should not have put himself in that position. I fear that is an underlying thought many have about others they struggle to empathize with because they are so distanced from them whether it be by lifestyle, belief system, or appearance, etc. I have grown up with white, brown, black around me (not in society but at home) and hearing their accounts of their experiences, having different experiences with each of them, as well as feeling equally close to them all has made me perhaps more in tune with the realities of racism. Even still, l have to take their word as to what their experiences are because I can’t really know and I can’t try to interpret what I really think happened to them based on what I think would have happened to me. It really is something I wish could be discussed more. Many of my views have been guided by debates and heated discussions. I’m grateful for them. I don’t want to know where I would be had people not shared their inconvenient opinions or observations with me.

    I appreciated your ideas and questions at the end there, by the way. I’ve always wondered if an absence of black people in the DOC had to do with socio-economic and cultural influences and also the appearance of the group of the most well loved members of the DOC. I obviously don’t know because I’m not black but as someone who is mixed, I’ll admit that I have felt kind of outside looking in based on my appearance and my financial situation. And honestly, that’s something I never have said before. It’s not something I feel any resentment about…I’m just sharing my awareness of those feelings.

    Oh, I also appreciated your thinking of this in a 3d model versus a linear one-that makes sense to me. I was called names at school until Jennifer Lopez entered the scene and suddenly my position jumped favorably to people around me. I’ll never forget how weird that made me feel. If that celebrity did something negative, was that going to hurt me, I wondered?

    I hope no one gets offended at me sharing my experiences…I can’t really share anyone else’s and I feel strongly about this subject.

    So anyway, thank you for this. All of it. T’was brave. Also, talking about this is hard. I’ve been sitting here for 10 minutes struggling to hit “post comment”. Here goes…

  9. ”Our privilege informs our perspective, and we can learn to recognize when that filter is distorting our view.”

    Thanks for this. I think you make a lot of good points that I will certainly be thinking about from now on. Has been interesting reading the comments, too.

    TID in prison system is a whole issue in itself that needs more coverage and I am glad you touched on it here.

    As someone who works to share the voices of EVERYONE with diabetes (specifically type 1 but in solidarity with type 2), this feels especially relevant. Without leaning all the way into the ‘all lives matter’ camp, I totally agree with you that the DOC fails to engage in much outside of issues that aren’t related to ‘people that are like me’ (aka: they look like me and come from the same background). If an issue is not centered around or very obviously related to a lot of people in the DOC, it doesn’t seem to matter. For example, people are up in arms about newest technology and needing it NOW, but seem to turn a blind eye to those who are less privileged and unable to access the basics (insulin, test strips, etc.).

    BLM is definitely a part of this and, as you expressed, privilege is a huge part of this. If someone in another country – or our own country – is dying because of their T1D and unable to access the basics (whether it is because of their race, their social status, their economic status, etc.) we should be outraged. I am outraged that people are not outraged!!! I have the same questions about why the DOC is not engaging in these wider issues. I hope we can all remember to think and consider things outside of the generally (of course not completely) white, generally middle class (again, not completely) mindset.

  10. What a thought-provoking post, Lee Ann. Thank you for having the courage and start this needed discussion. So much to wrap the brain around, and I am at a loss on some of these things too… so don’t even know where to start. One thing I will add — not sure we can necessarily draw a line between “no response” from the DOC to a conclusion that “the DOC doesn’t care.” Personally, before reading your post and then associated links on FB, I wasn’t aware this had any diabetes connection. Why? Because honestly, I’ve been very self-absorbed in my own life’s activities, and so I didn’t realize the D aspect to this. Does that mean I should’ve ignored it? No, it doesn’t. No more than daily posts about children starting overseas, not having access to drinking water, and so on. There are a lot of topics in this world, and unfortunately there aren’t many who have the bandwidth to take them all in and respond 100% of the time. I definitely appreciate and agree with your note that many in the DOC need to do better connecting dots beyond diabetes, and building bridges to make a larger overall difference in the world. Again, these are very big ideas and can be daunting… and in the end, when they’re controversial or not comfortable, many go the way of caution and just don’t raise their voice. That’s a definite DOC problem, but one that stretches way beyond anything online. All good discussions to have and issues to keep in mind as we move forward. Thanks for this.

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