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.
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).
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.
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.
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.
Hey you! Yes, you!
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4 thoughts on “It’s not BIPOC with diabetes, it’s you, diabetes organizations”
Thank you Mindy. I’ve had many of these same feelings for quite a while. Don’t stop speaking out! Be well.
Thanks for commenting and reading! Hope you’ll share!
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