In my newly published Diabetes Manifesto, I take a critical stab at a large swath of the diabetes community (esp. online) in the chapter titled The Culture of Diabetes.
It may seem bizarre that I take this stance (and post it here!) given that fudiabetes.org is an online community for diabetics, but I am not blaming sites like this, nor am I taking aim at anyone in particular.
What I’m suggesting is that there is a mindset in the mainstream medical and patient community (and far less so in more educated communities like this one) that bends toward victimization vs. empowerment.
One of my primary issues with the state of the community is this notion that being diabetic is just as much an identity as it is a condition. Whenever I hear or see someone say I am a diabetic, I cringe because their condition has become part of their identity. This may not bother you, but it bothers me a lot. Which is why I wrote what I wrote.
I am curious, though, about how you feel about this portrayal of the community and to what extent victimization vs. empowerment plays respective roles within in.
If you’re interested, read the chapter and comment here with your thoughts! Please try to keep things civil, even if what I wrote evokes strong emotions. Thank you!
[UPDATE: Based on some initial feedback in the comments, I feel it’s important to clearly state that this is a chapter based on my experience with individuals in my circle of friends and family, as well as the large, mainstream diabetes forums such as diabetes.co.uk, FB groups, and Reddit forums. This community is clearly not part of the culture of victimization by design, but that doesn’t mean you don’t have a POV on the topic writ large, right? That’s why I’m posting here.]
My intent here is not to upset people, even though in my experience this topic seems to do just that with some folks. I apologize if it evoked strong negative emotions. Fo what it’s worth, I don’t think harping on terminology is a sign of victimhood but to each their own.
@JonDeutsch, this site is for those who do NOT feel limited by diabetes. This is the whole ethos of who we are at FUDiabetes—that is what is behind the name as well…
I think this theme of yours—victimization complex community— may apply more to other parts of the diabetes community. The last part of the community that it would be apply to, imho, is here. As a recently diagnosed non-glucose-normal yourself, you may sometimes come through as having an over-simplistic view of things: I know that is who I was as well in the first years after my son was diagnosed.
@JonDeutsch,
I understand where you’re coming from, but I have no problem with saying that I am diabetic. I am also short, but I’m not “vertically challenged”. I’ve learned to stand on my tiptoes, and can reach really high if I position myself correctly. Ditto for being diabetic.
I was always wondering about the name… I couldn’t find anything about it in the FAQ!
Yes, I mentioned that in my note above. Which is why I wanted to get this community’s POV on it! I’m aiming for gaining more knowledge by engaging different communities, including this one. I hope that’s OK with you.
While coming across as overly-simplistic may be an unfortunate byproduct due to the nature of the document, it’s intentional, and, most likely not due to my relative newness to the condition or the community. The condition is “new” for me, but I’ve lived with a diabetic my entire life (who was misled and now suffers from complications despite being told he was managing things well).
Everything is more complex and nuanced the more you are steeped in it! But this document is aiming to reach n00bs as well as pros. Which may be its biggest challenge.
There are many diabetics in my circles who, after reading it, felt a new sense of optimism and sense of control over their condition - and their identities. There are others who have been offended and insulted.
Honestly, I didn’t foresee the conditions that could lead to the latter response, so I wanted to share it here - a group of “pros” if you will to get your take on it.
I’ve been sharing other chapters here as well (mostly in T1D and T2D tags), based on @Chris’s suggestion to raise each chapter as a distinct thread for discussion and debate. I felt this topic made more sense here on the community forum.
@JonDeutsch people are only “victims” if they choose to be and remain ignorant of the possibilities. Forums such as FUD cater to those who prefer to be limitless and not “victims”.
While I applaud your desire to flesh out the whole Diabetes thing for yourself, your choice of sites to post at leaves something to be desired. As they say in business, “Know your audience”. Possibly it’s because you are such a new diabetic that you don’t.
Yes, as I alluded to in my initial post, I am aware that this is not the natural home for festering victimization. All the more reason why I’d love to get this community’s take on it. Do you believe this to be the case in the general community? Like on diabetes.co.uk, or FB groups, or Reddit forums?
Perhaps I should update my original post to be less alluding and more direct in my framing. I seem to be annoying some people here!
People can use whatever aspects of themselves they wish to form their identity. Incorporating diabetes into one’s identity doesn’t have to be a negative.
My experiences over the past several decades seem to be the exact opposite of what you are expressing. Not just in this community, but in general. While people may sometimes rant about the inevitable frustrations around diabetes, the online (and offline) diabetes communities seem to be all about empowerment.
Well, that’s great to hear. Perhaps it’s only the corners I’m lurking in that seem to be filled with victimization. The quotes at the top of my chapter are cut-and-pasted from online forums. And I see a slew of them.
FWIW, I think frustration and anger are different from victimization. People have every right to be frustrated and angry over the condition.
Victimization vs. empowerment is more of an approach and a mindset. And when people say “I am a diabetic,” to me, it’s an off-putting identity tag. Perhaps not seeing it as negative is an interesting turn on the topic. I’ve never seen someone say “I am a diabetic” as a way of expressing a positive sentiment. Now, if someone said “I’m a proud diabetic” - I can see that as being positive, for all the good reasons. Proud in how they manage adversity is how I read that.
Curious - how long until I’m considered not to be a n00b to the condition? It doesn’t feel great that some people may perceive my tone or coverage as being rudimentary or basic. That was not the objective of this document.
This probably depends entirely on individual opinion. But to put “newness” into some perspective, there are many on these and other forums who have been living with diabetes for 25-60+ years.
Really? Does it occur to you that very same might be true for your accusations? That the premises of your arguments might be wrong?
Let me quote from your chapter:
I spy a culture of victimization within the diabetic community
(…) “Diabetics need to check their eyes more frequently.” “Diabetes is a disease.”
(…)
These are all quotes and sentiments I’ve heard numerous times across message boards, spoken by physicians, and shared by friends and family.
The Type A Diabetic perspective on this is that they are all bogus claims designed to reinforce the bizarre tribal nature of the “diabetes community.”
Do you realize how incredibly arrogant and ridiculous this is?
Once you connect a disease to your identity, the disease is now more a part of you than simply your insulin disorder. The disease is now in your mind as well. That’s right: If you have thought or said “I’m a diabetic” you’ve let an insulin disorder metastasize to your mind.
Give me a break! I don’t buy any of this identity talk. I say I am a diabetic not because it’s my identity or whatever you try to make of it. I say I am a diabetic because I think it’s needlessly inefficient to say “I am a person with diabetes”. That’s all. Saying I’m a diabetic doesn’t erase my personhood, it doesn’t make me a victim, it’s just a word meaning “person with diabetes”, like a father is “a male person with a child” or a doctor a “person who practices medicine”.
Look, I’ve refrained from commenting on your topics about terminology, because I’ve seen these debates before and I think they’re quite tiresome. Others can have these debates if they like. However, I don’t accept baseless accusations of victimhood.
Possibly it depends upon where—and how long— one ends up in Kubler-Ross’ grief stages, if you believe in her modeling. For instance, I was stuck on anger for a while
Absolutely. A quote from my “Is This For You?” page of my manifesto:
Just because I think the culture of diabetes is a huge problem and encourages victimization, that doesn’t mean I’m right, or that you have to agree with it.
Perhaps sharing specific chapters in isolation isn’t doing my document any favors. When I say “The Type A Diabetic perspective on this”… I’m not saying “this is the truth and if you don’t believe me you’re a moron.” The Type A Diabetic perspective is a philosophy that I’m advocating for in the broader document. Sharing a POV from a specific manufactured “type a” perspective is specifically designed not to tread on arrogance or ridiculousness. I think that delineation is quite larger in my mind than perhaps in yours and others’. Do you see the distinction now that I point it out?
That’s fine. You don’t have to buy any of the identity talk! I’m not demanding that you do. Again, sharing specific chapters outside of the entire document is doing me a disservice here. In the document, one of the primary points I make is that we should not be calling it diabetes either. We should be calling it an insulin disorder. And, by that, yes, I am suggesting that we say “I have an insulin disorder” which is a descriptive, non-branded way of describing a medical condition that actually educates as well as explains the situation.
Like I said in the post where I linked to this chapter…
With that, I hope you understand that I was not, and am not, accusing you or anyone in particular of victimhood.
I honestly have no objective idea where I am on the stages of grief, but I believe I’m in the acceptance stage, and have been for some time. There are a few people who have read my document and believe I’m in the bargaining stage and am suffering from internalized ableism. That’s their right to think that, I suppose, and maybe they’re more right than I am. I’m not a psychologist, but I just don’t think that’s the case.
The only part of the medical condition that I continue to struggle with is my intense fear of needles. Certain chapters of my manifesto are certainly tilted toward my desire to delay the onset of exogenous insulin. That’s a clear and open bias that I’m happy to acknowledge.
But, frankly, most of my struggle is not with me and my situation…it’s how I see a sub-optimal system in place and how it’s not serving itself well. This document, broadly, is a systems audit of the diabetes space. Yes, the tone is that of a manifesto - so it’s kind of in-your-face at times with broad and bold proclamations. Behind this tone, the content far more of a diagnostic and a set of ideas to move us into a new, better place.
Again, perhaps sharing this single chapter out of context was not the best idea. Having the whole document in my head, it probably isn’t easy for me to think about how this one chapter would read all by itself.
I never say “I am a diabetic” Not ever. I simply say that “I have diabetes.” I am a full person, and there are parts of me that have illness. I am NOT the illness itself.
I am generally not a fan of manipulating language in awkward ways to try to avoid something perceived as “negative” by society. For some, diabetes has had a profound impact on their lives, has steered their life in a positive direction, or has driven them to be a better person. It is not a negative. If someone does choose to incorporate diabetes into their identity, who is anyone else to judge?
I don’t know how long you’ve had diabetes, and I’m definitely no psychologist, but it took me about 25 years before I felt I was in a place of acceptance. And I am not one who rebelled or hid it or ignored it or anything like that…but diabetes is a life journey, not something that’s over and done with in six months or a year or two. I am sure my perspective will continue to change over the next hopefully 50+ years!
Which is why I wanted to get this community’s POV on it! I’m aiming for gaining more knowledge by engaging different communities, including this one. I hope that’s OK with you.