May I tell a story and ask a dumb question?

Community
21

@jojeegirl, that wheelchair analogy is better than you may realize in terms of the disconnect between reality and the public’s perception.

I have a close friend who mostly lives in a wheelchair (he can walk across a medium sized room, but that’s about it). Now it happens that my friend’s circumstances are such that cost is no object whatever when it comes to medical care. I mean, no object. If he or his doctors think he needs something, be it test, treatment, DME, or whatever – he just writes a check. But with all that resource, he still says that until you actually live in a wheelchair you can’t imagine how intensely wheelchair-unfriendly the world is. And that this remains true despite ADA and other cultural advances. He has often commented that if someone with his resources finds it this difficult, what must it be like for the “ordinary” person? And, that policymakers and the public at large are essentially clueless.

5 Likes
22

I am probably too Aspie for this topic, LOL. In the interest of testing the hypothesis, I can share my world view and see what commonalities others may find.

I’m a former MDI, current pumper, 10 years post diagnosis. I finger stick to know my BG. My oldest finger stick is first thing in the morning, when I’ve just woken up. During the day my oldest reading is rarely as much as 3 hours old. I’ve blind bolused maybe twice. The idea terrifies me. I have a colleague who forgets her meter more often than she remembers it. If it’s in the car, she won’t bother to go out and get it; she blind boluses all day long. It never occurred to me that I should hide my finger sticks from my young (under 6) nephews. When I was MDI, I freely injected in public; not in a dramatic, attention grabbing way, but in the same way… hm. What is my mental state? Say I’m driving to an upscale restaurant and I see someone with a flat tire. I stop and help him put the donut on. My ‘good’ shoes are muddy. On we go to the restaurant. As I walk in, I’m aware that my shoes are not the same as everyone else’s. I’m aware that I stand out, but not concerned enough to go buy a new pair of shoes before going in. Nor will I eat out in the back alley, because someone might sniff at my fashion faux pas.

The point of this post is to elicit further thoughts from readers, not to persuade anyone that what I do is right (ha, or even sensible!) I’m not sure there’s a shared frame of reference between an insulin user who blind boluses and myself., so that’s one big difference. But the question you’re asking is the opposite: what are the commonalities?

2 Likes
23

@Buck Thank you so much for sharing! 8) Please know it truly does give me a glimpse into “how you roll” in the world. Seems that your colleague “lives that life.”

Please know that I used those two colloquialism intentionally. And following is my motive…

In the African American community/culture, particularly the urban community, there are expressions that we use when we discern that there is a shared life experience/understanding/knowledge. Expressions like “that how I roll”, "live that life, or “that’s how I get down”

Here’s a question?

What did people do before blood glucose meters were invented and what world view did people who "blind bolused have? How did they “get down,”, “how did they roll.”

When I read your thoughts pertaining to the internal “frame of reference between an insulin user who blind boluses and [yourself],” I got really excited.

I got excited because as a certified health coach expressions like “one’s internal frame of reference” help us help people who decide to use a health coach/diabetes educator/health educator for a variety of reasons.

Now, I don’t know you nor your colleague, but here is what I strongly believe I can say (from an urban girl’s perspective)…

You not about “that life” (blind blousing) and
your colleague

She “gets down like that.” “That’s how she rolls”

Is it right or wrong…

Not my place to say. I don’t look at people from the perspective that they are broken.

Do I believe you both have a shared understanding of “blind blousing?” Yep!

And by extension can one infer that before the invention of the blood glucose meter, people who had family members who were type 1 had a shared a similar experience as they move, live and existed in the world? I would say, Yep!

Is it a culture? I don’t know.

Thank you so much for sharing with me. Please know that you are instrumental to my growth. I thank you for starting my day off in such a great way!! :smiley:

And I wish you a great one as well.

2 Likes
24

I would say, yes, the type 1/LADA diabetic community and other diabetic are a subculture, for sure. It also goes across borders as we all have to do similar things to stay alive and healthy.

I do think more should be done to increase awareness of the things we have to deal with.

I think one thing is we need to educate people in our daily lives. As an individual, I don’t hide that I have type 1 diabetes. If I’m at the gym, for example, and I’m taking an exercise class, I let the instructor know that I will stop in the middle to check my glucose level. If I’m out with someone I don’t know or rarely go out with, I will check my blood sugar, and if I need a shot, I’ll ask them if they have an issue with needles. It’s rarely an issue, but I don’t take my shots in a restrooms. I’m not going to hide my diabetes or inconvenience myself on the off chance someone might have an issue. I expect that if someone is skittish they can avert their eyes for the few seconds it takes for me to give myself a shot. If my CGM goes off, I do take that moment to let someone know I’m diabetic and I wear a continuous glucose monitor.

I choose not to suffer silently with this disease. I’m also very public about it because one day I might be low, and I’ll need help. I want people to know because I don’t want to die.

I’m an urban kid too, so that has a lot to do with my perspective on this, I’m sure. From that perspective, I’m just not inclined to hide what I’m doing or what’s happening from people. I think an excess of info is better than too little.

2 Likes
25

@Regina I like it! You just gave me a wonderful idea to raise awareness to what you describe as a diabetes “subculture?”

It would be great if PWDs simply tweeted this hashtag. Do you think we can get others to do the same and create dialogue regarding promoting a greater understanding of the “daily lives” of PWDs?

I am not going to tweet it until I get some feedback.

Thanks so much for sharing!!! 8))

#LOUDANDPROUDPWD 8))

26

Honestly?

There is so much diabetes noise online that for it to have any impact it would have to be a coordinated effort. This community is one of them but there is also a weekly diabetes-focused Twitter chat that I never have time for. (Starts at 9pm EST, but it’s impossible for me to join at 6pm PST): #DSMA

There are already a ton of hashtags flying around: #DSMA, #T1Dproblems, #diabetes, #t1D. I’d look more to working with what’s already going on than adding another to the list.

1 Like
27

@Regina Good thing I asked. Thanks for the feedback though!!! 8))

Be well.

1 Like
28

Provocative stuff. Just seeing this on my way out to work, but in lieu of the longer response I’d like to make:

Two things.

1–I think there are some parallels but I think they are very attenuated as compared with urban Af-Am experience, so I’d want to handle the comparison very cautiously.

2–There are certainly commonalities between people on insulin, but at what point do commonalities become “culture”? Needs some definition. I have some ideas on that but not enough time–maybe later…

5 Likes
29

@DrBB I eagerly anticipate your expressions.

Have the bestest day today!

1 Like
30

Ok, the long version. I think a more useful comparator than urban af-am culture might be what has been going on for at least a generation among the deaf. There’s a significant movement among deaf people to disavow or deprecate the “disability” label and proclaim deafness affirmatively as a culture in its own right. A critical support to the claim is ASL. Having a language unique to the group is huge–the argument can be be made that this is a group with its own medium of expression, one with its own history and even its own aesthetics. Now that is clearly the case with urban af-am, if I can use that shorthand, which has generated powerful forms of expression too numerous to name and continues to do so, with traditions whose roots go back centuries. One thing you see there and in a lot of other subcultures of oppressed groups is the development of “private languages”–slangs and ways of communicating that are deliberately obscure to “outsiders.” In fact, the awareness of being cast as outsiders is one of the driving forces of this kind of thing. Creating your own “insiderness” and casting the dominant culture as “outsider.”

Now there are elements of that among people with T1. What “I’m low” or “I’m high” means to us is completely–at times hilariously–different from what it means to the non-T1 world. It’s ok for us to use expressions like “shooting up,” but decidedly not ok for outsiders. And the insider-outsider thing definitely applies. We’re keenly aware of being presented in a certain way in the popular culture, and equally aware that that presentation marks us as being peculiar and different. “Ew, needles, I could never do that!”–“Didja eat too many candy bars when you were a kid?” and my own personal favorite, the “That diabetic’s gonna need a shot!” rule of Hollywood plots involving T1. All of which has the flip side that among each other there’s an element of celebrating our peculiar “insider” knowledge of how the whole insulin thing works, hence the numerous threads here and elsewhere where we post examples of outsiders’ ignorance for the amusement of other members–“insiders.” We’re all “members of the club no one wants to join.”

But just like among the deaf, there’s not anything like 100% agreement about being a “culture” (if that is what we have). The perennial thread about etiquette for testing and injecting in public (there’s one running now) has strong feelings on either side. @Regina expresses one pole of that split, what might be called the Out and Proud side (“I choose not to suffer silently with this disease!”), others feel equally strongly that like any other health issues it’s something very personal to be dealt with in private. But it’s kind of a handy gauge to note that there is nothing like the debate among deaf people about a cure. There is a strong current in deaf culture activism that actually opposes cures for deafness: essentially the argument is that there isn’t anything to cure. I’d be totally gobsmacked to see anything like that among T1s. Far more prevalent is the suspicion that because treatment generates so much revenue, there’s an at least tacit conspiracy against a cure. I think it’s safe to say that if it IS a culture, it is one that every single one of us would gladly abandon given the choice.

Translated into personal terms… I think about this whenever the promise a cure comes along, especially recently as they’ve become more sophisticated and plausible. I’ve had T1 for 30+ years, since my late twenties, and the thought of suddenly not having that in my life, when I seriously think about it, is actually a little disorienting. I mean the slogan–and I ascribe to it–is “T1 is something I have, not something I am.” But at the same time, something you’ve been aware of every waking minute of the day for three decades can’t help but form your identity, like a tree growing with a parasitic vine wrapped around it. It wouldn’t slow me down by one second if I had the choice of making it go away forever. But I don’t think I’d ever entirely get over what it’s meant to have it in my life. I’d probably still feel like I had something unique in common with other Former T1’s, if ever there comes to be such a thing…

5 Likes
31

Lots of great points, @DrBB. “Culture” is one of those amorphous terms without a universally agreed-upon definition, so there are always going to be subtle shadings and difference of opinion about where a culture begins and ends, i.e., where the culture/nonculture line is drawn. Of course there are cases where it’s clearcut. Your example of the deaf seems like a slam-dunk to me; a group with its own language has to qualify, IMHOP. Jewish culture is clearly distinct, with thousands of years of history and language of its own. And there are plenty of others any of us could list. It’s in the hazy middle ground where the discussion gets interesting.

32

@DrBB Thank you so very much for your insightful expressions. I am genuinely overwhelmed by them.

Many people are indeed attached to their culture, however as you have so eloquently expressed…

“I think it’s safe to say that if it IS a culture, it is one that every single one of us would gladly abandon given the choice.”

and to balance that with

“But at the same time, something you’ve been aware of every waking minute of the day for three decades can’t help but form your identity, like a tree growing with a parasitic vine wrapped around it. It wouldn’t slow me down by one second if I had the choice of making it go away forever. But I don’t think I’d ever entirely get over what it’s meant to have it in my life.”

I am deeply moved by your expressions and feel humbled that you trust this forum and myself enough to share what I consider to be intimate thoughts about the impact diabetes has had upon you.

If I have chosen the wrong words to express my gratitude for your willingness to share yourself with me and the community, please know that my heart is responding very differently.

Thank you for helping me become a more effective diabetes educator.

Be well.

1 Like
33

Yeah. I think you hit it on the head. I know that other diabetics might not be as comfortable, but I’m definitely “out and proud”. There are many reasons for it, but the primary driver is self-interest. If people know I have type 1 diabetes, like it or not, they look out for me. If I’m going low and I don’t catch it before me or my CGM does, they just might. (It’s happened a few times that way with both friends and my boyfriend.)

However, running a close second is educating others. :slight_smile:

1 Like
34

Thanks @Regina, that’s pretty much where I come down on it as well and for the same reasons, but I respect those who have a different take on it. We all have to figure out our own accommodation to this disease.

1 Like
35

Don’t mistake my crystal clear stance on how I handle my diabetes as a lack of understanding or respect for others and how they go about handling theirs.

I might not understand it, but I know they have their reasons. That’s good enough.

Anyone who puts something out on a forum like this has to expect that they’re going to get a range of opinions. For me, it really is an issue of life and death. I won’t coddle strangers, or I’m going to spend a lot of time doing that instead of taking care of myself.

3 Likes
36

And I certainly didn’t mean to imply otherwise–my apologies if it seemed that I did. I admire your forthrightness.

37

Some of the deaf might want to try communicating with chimpanzees and other primates -some of them have learned sign language, but they do not have the right throat structures and brain structures to learn much of any spoken human language.

38

No, thankyou. I want out of the world of silence.