It’s not BIPOC with diabetes, it’s you, diabetes organizations

/ mindybartleson

It’s not BIPOC (Black, Indigenous, and People of Color) with diabetes, it’s you- diabetes organizations. In case you were wondering, Black Lives Matter- and will matter once the headlines move on. Black Lives Matter in healthcare and in diabetes. Black LGBTQ+ with diabetes also matter and cannot be ignored or forgotten either.

It’s also not BIPOC with diabetes and their families, it’s you JDRF (and many other diabetes organizations plus the diabetes community).

It’s not me, it’s you.

This is my goodbye- my breakup- but I will not say “it’s not you, it’s me”. Because- it’s you.

And there are many organizations outside of the diabetes space and in it, but I’m focusing on you, JDRF. Because I am saying goodbye to you. Because you are also one of the largest organizations- who people are really watching to and looking for guidance.

Over 20 years, but I am done.

20 years. 20 years of involvement. 20 years of attending events, volunteering, and/or fundraising.

20 years. I haven’t wavered. I stood by your side because of what you provided for me (and my parents) at the beginning of diagnosis. For what you have done for many families newly diagnosed.

In my teen years, I bit my tongue because I felt like you abandoned me because I wasn’t a cute kid anymore. I still stayed involved. Starting in college I stopped biting my tongue, but I tried to work with you- especially my local chapter to make changes because as I was learning more in college I saw that it wasn’t just the teens- a lot of people were not on your priority list. Then I was told to hate you and not be involved with you post college, but I was still loyal.

I have many times felt abandoned and ignored by you. I have many times tried to have conversations and work with you professionally but mostly on my own time.

But at least you were there for me at some point to abandon. There are many you were never there for to begin with like Black people with diabetes.

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Black children are dying from diabetes at TWICE the rate as white children.⁣⁣ ⁣⁣ According to the CDC, In 2012-2014 Black children and adolescents had the highest diabetes death rates out of any race. ⁣⁣ ⁣⁣ But why?⁣⁣ ⁣⁣ The CDC states that the high mortality rate of Black diabetics could be due to “differences in access to healthcare, health services, diabetes self and parent management education, and diabetes care.” ⁣⁣ ⁣⁣ According to the US Institute of Medicine, African Americans are TWICE as likely as Whites to be uninsured. ⁣⁣ ⁣⁣ So what does this mean?⁣⁣ ⁣⁣ African Americans are more likely to be uninsured and therefore are more likely to have less resources to manage their diabetes and will face high prices for insulin and diabetes supplies. Which will therefore lead to Black diabetics having a higher mortality rate. ⁣⁣ ⁣⁣ Racism manifests in MANY forms, and the healthcare system is one of those ways. Systemic racism plays a large role in why African Americans are more likely to be uninsured and why they face such large disparities in the healthcare system. #blacklivesmatter #blackdiabetics

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My 20 years started to come into question when the pandemic started and my disappointment in how you approached communications with it regarding diabetes. I reached out via social media and email right to the top. I was patient, and I waited, but nothing happened.

I said I would say something publicly and that it would impact my involvement with you moving forward. I reached out to someone else and the attempt would be to reach out to someone else. That was in the end of the March- that was also when I reached my limit of how much energy I had with everything going on. So I decided I would be dropping it- it was one thing I couldn’t fight for right now. There were other organizations willing to listen or at least acknowledge me so that’s where I used my energy- what I had left from being high risk and working in healthcare marketing during a pandemic.

But here we are JDRF- personally I am glad that I didn’t have the energy then because I would rather and need to go to town on Black Lives Matter in healthcare and in diabetes right now. The racism and racist comments throughout the diabetes community/ including your supporters.

I am done. 20 years of being faithful but I am done. I probably should have been done sooner and not because someone told me to be done. But because I realized no matter how many times I tried to work on things with you, I wasn’t a priority- I didn’t have a big dollar amount to my name to get you to pay attention.

That’s your priority- the people with money- and it’s time for you to be honest about that.

When so many people FOR YEARS- have been trying to have honest conversations with you about race and diabetes as well as your organization (and about so many other things).

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My son was diagnosed with Type 1 diabetes in 2008. We were very active in the online and offline community. He was a JDRF ambassador who attends several diabetes camps, and I was the JDRF walk chair for over 4 years. As my son got older he started to notice he never saw anyone who looked like him. There was ONE other Black child in his groups. When I started to discuss how the intersection of race was crucial I was cut off by many in the community. I quit JDRF & my blog. It’s been years. BUT This week I met @anita_nicole_brown a Black woman with diabetes who is speaking nothing but truth about the disparities in the Diabetes community. In an effort to amplify her voice (I’m excited to get back to diabetes advocacy along side you!) I’ve decided to show case some ways that whiteness takes the front seat when it comes to Type 1 Diabetes representation & medical needs. TW death: . . “. . “Death rates for black children with diabetes are more than twice as high as those for their white peers and more than three times higher than those for Hispanic children, researchers report in the May 19 issue of the Morbidity and Mortality Weekly Report. . . The higher mortality rate may reflect differences in healthcare access and disease management resources, the authors suggest.” -Medscape . . “The care of type 1 diabetes has evolved rapidly over the past few decades, but not all racial and ethnic groups seem to be benefiting from the latest treatments, a new study indicates. The researchers found that black children with type 1 diabetes were less than half as likely to receive treatment with an insulin pump than white children were — and that difference persisted even when the researchers adjusted the data to account for income, education and insurance. Hispanic children were also far less likely than white youngsters to be on an insulin pump”. -Healthday.com” #type1diabetes #blacklivesmatter

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One thing I learned, is that when something isn’t good for you anymore- you need to walk away- even if at one point like at diagnosis- it was. I cannot just continue to be involved when you are ignoring people. When you invited Black people with diabetes as part of a marketing campaign “to be part of the convo” – to look good– because honestly- that’s what it was. How it is always.

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Here is a story about another org NOT JDRF and why my kid decided he was DONE with diabetes spaces: . . My son used to go to diabetes camp every year for about 2-3 years. It’s a place where he got to be around others with Type 1, and be able to manage on his own without mom and have a sense of belonging and comfort. Or so we thought. It was a sleepaway camp for 3-7 days. . . On his last camp experience a white kid with diabetes thought it was appropriate to victim shame Tamir Rice (this was a few months after Tamir was killed), and proceeded to tell my son that he KNEW it was Tamir’s moms fault cause his father, a white cop, told him so. My son was immediately enraged and distraught. He didn’t let up and so my son continued to check him. (Keep in mind I didn’t know this till he got home cause SUPPOSEDLY parent calls aren’t allowed unless an emergency – wait for that part). . . Later on in the week this same kid kept harassing my son making snide comments no one said a word. During dinner one night the kid said he didn’t want brown rice only white so my son MADE A JOKE and said “IDK seems racist”. Guess who got in trouble? The kid later that night again started taunting my son about something ridiculous and my son lost it. He cursed him out and once again guess who got in trouble? I was told since my BLACK son said the N word he also was being racist. Can we make that make sense please? . . Again, I wasn’t called but guess who was allowed to make a call? The white child. He was allowed to call his mother TO ASK HER TO TELL THE CAMP HE WASNT RACIST. You read that right. My son who was taunted all week couldn’t call, but the little racist could. But it gets worse. When the plane landed and I went to check in with the counselor MY son was given a warning. About HIS behavior and how if it happened again he couldn’t return. I then ask what about the kid who started everything? (My son told me the whole story when he ran to me). They had the audacity to tell me “that little kid? You think he started everything?”. So what I heard and what was implied was this little white kid couldn’t have possibly been the aggressor cause he wasn’t big and Black like my son. ⬇️

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I know you have done great work to advance treatment and are working on a cure (and insert all of the types of comments I have seen on your post).

But those are excuses.

I am done. You need to do better. You need to be accountable. and I know you have posted a few other things on social media since everything happened but that’s right now and because of backlash for what you did and didn’t do. What happens when BLM isn’t the headline?

I am done. You need to make honest change- you should. You must also include the Black LGBTQ community too.

But will you? When obviously in your eyes- so many people- especially BIPOC with diabetes are not the ones you really care about.

What happened?

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Last week, my friends @blackdiabeticgirl, @anita_nicole_brown and @diva_betic shared their stories with @jdrfhq. Their experiences were dismissed over and over in the comments section. Lots of us went to bat for them in the comments because we were disgusted. We could see how their points about lack of listening to Black women were proven. So often, people dismiss the physical and emotional pain of black women. They tell us our stories couldn't have possibly happened because they didn't see it. A few weeks ago I started work on an article about health disparities for Black people. It opened my eyes to the reality that specifically in the healthcare system we deal with a lot of implicit bias. More often than not, Black women feel the effects. One study showed that Black women are sometimes given less medication although reporting similar pain as women of other races. Black women are disproportionately affected by the maternal mortality rate. Many of the Black diabetic women I know lived with a diabetes misdiagnosis or had their concerns dismissed before they found a doctor who would take them seriously and get them the right treatment. It's so necessary to listen to the stories of people who don't always show up at the forefront. When we listen to stories that are unlike our own, we learn who is afforded privilege, and who is not. It's also SO important to call this out when you see notice it. That's how you can be a good ally. Many of you did that. Lastly, if you're an organization, and you're asking Black people, or other people of color to share their stories, protect them. Stand up for them. Let others know you won't tolerate bullying. It isn't enough to just put a Black person in your feed, or in your marketing campaign. The good intentions to feature them must also come with the good intentions to back them up when the comments become hateful. I face this constantly, and I hate seeing others go through it. We must call it what it is when we see it. Allyship is a verb. Keep practicing it. #t1dlookslikeme #t2d #diabetesawareness #diabetes #t1d #blackgirlmagic #diabetestype2 #diabetestype1 #allyship #believeblackwomen #diabetic

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The weekend of Juneteenth, JDRF featured three powerful Black women with diabetes on social media. What came next was racist comments and bullying- but no responses from JDRF. It took people begging them to say something for something to finally happen after several days of silence. They turned off and removed the comments, running away from the hard conversation, at first. Comments were turned on and sometimes JDRF has responded to the comments- especially when more people are watching. They have also issued non-apology apologies.

Learn more about the experience from Anita Nicole Brown

I am done with JDRF until they share plans to do better and show that they actually do better for a longer period of time. I will continue saying it and having phone calls with people about it. I will continue my work in other organizations to speak up about it and do the steps with them to change. There are of course so many other groups and companies and people that fall into this.

The diabetes community must do better. We must do better. I must do better. When it comes to race and diabetes- and not leaving out BIPOC LGBTQ+ with diabetes

Please TRY and come for me. I have always worked and still work in healthcare. The work I do is healthcare marketing and use my social work education to guide me. I have worked in diabetes. I have worked in non-profits, tech companies, and more. I have worked in small and large orgs. I have worked in start-ups and older organizations. I also want to continue learning and listening.

When it comes to marketing, it’s always on and happening- especially with social media. Why was something posted without someone there to monitor? Without a game plan? Who is reviewing the content, responses, and plans?

I know the system in terms of diabetes organizations. I know it takes time. But there’s something at play- priorities and PR. This should have already been in progress, earnestly and honestly, when Black people with diabetes have tried to talk to you for years about this. The initial posts happened so they could be part of the trend. The next set of posts feel like a result of the backlash they have gotten.

I also know how BAD the diabetes community- especially the type 1 community is when it comes to differences and diversity. I know people who have spoken up and been shunned for it. I know people on committees/various involvements and those who have worked in the space who have slowly been pushed out of involvement (or even quickly), told to be quite in large settings, and/or told not to be involved with other groups or speak up in those groups (including myself- but I would do it again and still do).

We all must do better in so many ways. We must learn. We must be part of the change even when it isn’t on our feeds or our headlines.

If I wasn’t clear… Black Lives Matter. and JDRF, I’m waiting- with maybe a slight sliver of hope but not feeling optimistic.

JDRF, I am done until you do better for BIPOC with diabetes and their caregivers. Diabetes community, I am not going to stop talking about it. We must do better.

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After seeing such a positive response yesterday regarding the post on disparities in healthcare, I wanted to try to take it a step further and provide a list of resources so we all can take actionable steps to become better providers. This huge gap in healthcare will only start to decrease if we make an active effort to un-learn our unconscious racial biases and re-learn how to provide better quality of care to everyone, regardless of the color of their skin. Racism is a public heath issue and it is our responsibility as healthcare workers to educate ourselves and change the future of medicine. I am also still learning, so this is a reminder to myself first! The first step towards change is always acknowledging that there is a problem in the first place.⁣ ⁣ Swipe through to see just a few of the many books discussing racism in healthcare and what we can do about it as healthcare workers. If anyone knows of anymore books I can add to my list, feel free to drop them below👇🏼

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We’ll both be glad you did! -Mindy

4 thoughts on “It’s not BIPOC with diabetes, it’s you, diabetes organizations”

  2. Pingback: Gaslighting & 2020: What did I accomplish? I got by. | There's More to the Story: a blog about LIFE, chronic illness, and Mental Health

  3. Pingback: Trauma Anniversaries & Other Triggering Dates (COVID-19 Focus) | There's More to the Story: a blog about LIFE, chronic illness, and Mental Health

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