May I tell a story and ask a dumb question?

Community
1

Continuing the discussion from "Please shoot up in the bathroom":

I am posting apart from the discussion entitled “Please shoot up in the bathroom”, as I didn’t know here to put in in the discussion thread.

About two years ago I went to visit my son and we stayed in a hotel that is on the campus of Gallaudet University. Gallaudet University is specifically for the hearing impaired. Well, that evening my husband and I went to the bar/restaurant for a meal. The bar was filled with people and it was unusually quiet.

My husband and I entered the bar/restaurant walked up to the bar and proceeded to order our meal. The bartender looked at me as if I were a martian and said, “This is a private party.” I felt like crawling under a stone because I didn’t have the sense to acknowledge that this was a private function and that it was quiet because everyone was using sign language to speak. There was no music, no DJ. On that day I learned that there is a true distinct “deaf culture.” My idea of a party changed on that day.

Now here is my dumb question. (Please tell me if I am taking this too far) 8))

Do you think that people living with type 1 diabetes or LADA share a common culture?

Here’s my motivation for asking.

Changes in the law have had to be made for populations categorized as being “disabled.” That includes people with diabetes whatever the etiology. That’s under the Americans with Diabetes Act. Additionally, changes in the law have had to be made to protect people from all sorts discrimination.

People with disabilities (when compared to those who are not living with disabilities) have had to seriously advocate for themselves as a consequence of the prevalence of their disability as compared to the prevalence of conditions that are not categorized as a disability.

If feeding ourselves is indeed a basic universal need and the body’s reliance upon insulin plays a key role in fulfilling that universal need, do you think more should be done to raise awareness of what I describe as “the culture of type 1 diabetes or LADA” among people who are unfamiliar with the “culture?” Do you think raising awareness about the “culture” will make more people tolerant of what you all do in order to stay alive? I am happy to be part of your world in a small way.

For the most part, I don’t have to explain my actions pertaining to simply subsisting and I don’t believe you should have to answer to anyone as well.

Thanks for listening.

And P.S. the New York City social norm dictates that people mind their business – especially in urban areas.

2 Likes
2

I agree, with the qualifier that all types of diabetics (Types 1, 2, 3, LADA, MODY, and please accept my sincere apologies if I’ve left anyone out) definitely constitute a “culture.” Raising awareness of The Culture of Diabetes is a big part of what this Forum is all about…

3 Likes
3

A definite YES, with a couple of footnotes.

  • Don’t limit it to Type 1. They’re not the only people who use insulin or poke their fingers. You might be surprised at how many T2s are on insulin. Joslin now puts all newly diagnosed T2s on insulin, if only temporarily. The reluctance to use it as a first resort is changing, albeit glacially.

  • Raising public awareness, which includes dispelling pernicious and entrenched myths, is a major priority for diabetes, period, full stop.

4 Likes
4

@David_dns,

Thank you for your response. Please know that I certainly was not limiting the post to people diagnosed with Type 1 or LADA. The Americans with Disabilities Act covers all who are categorized as “disabled.”

However, from a learning perspective, there are many who have not beendiagnosed with diabetes yet live the “culture” as they have loved ones diagnosed with the condition.

Part of my motivation in asking (and perhaps this is already done) change might occur so that public places are more accommodating of people who use insulin.

I was thinking maybe some type of banner can be displayed or perhaps cultural competency training as it relates to diabetes can occur at places of work etc. so that people become more culturally competent as it relates to populations living with diabetes.

Thank you for your response.

1 Like
5

Please know that I am always seeking ways to advocate on behalf of those living and affected by diabetes.

Best to you all.

1 Like
6

Yes. The broader society knows precious little about diabetes, but I don’t hold that against them. Everyone is so busy with their own lives and that crowds out absorbing the details of many different disease realities. Most people understand that diabetes often requires the use of an injected medicine, insulin. Their recoil of considering daily injections is often the last thing they think about before they resume the usual track of their life.

The diabetes demographic that uses insulin totally gets that hypoglycemia is a part of injected insulin therapy and knows on a visceral level how that feels. If they meet someone on the street who is low they know exactly how to help.

Burning this one thing into the greater consciousness of society could prove useful and definitely enhance everyone’s safety. If my dental hygienist had known about insulin induced hypoglycemia symptoms, she would have never let me exit her office and get behind the wheel of a car and end up in the ER.

I can think of many visual techniques that could help educate in this regard but I also worry about raising the unwanted attention of unfriendly bureaucrats that would prefer to just summarily yank our driving privilege.

Any campaign to raise awareness of diabetes will need to delicately balance issues important to us. We are competent people that need some help and tolerance from time to time but often don’t see ourselves as “disabled.”

2 Likes
7

See, I perceive two separate and distinct aspects to this issue. One is the lack of understanding among the general public, which as you rightly point out is understandable though not in any sense acceptable.

BUT. Lack of awareness on the part of health care professionals of whatever stripe is something much more upsetting. To my blinkered way of thinking, there is no valid excuse for that. None. Zip. Zero. Nada.

$0.02

2 Likes
8

I don’t think your question is dumb. It’s quite interesting! I’ll be curious about others’ responses.

I think there is a difference between culture and community. A cultural group will have certain language and traditions and beliefs in common, while a community will have shared interests but may have great diversity in language and traditions and beliefs. I see diabetes in the latter group, and so I’m not sure that diabetes constitutes a culture.

I have severe allergies that impact my daily life just as much as diabetes does, and I participate in the online allergy community and engage in advocacy efforts. The allergy community is very similar to the online diabetes community, a network of blogs, forums, Facebook groups, branching into local organizations for those who want to get involved in “real life”. Yet, no one would say that allergies constitute a culture. I’m also legally blind, and actually have heard arguments for blindness forming its own culture, yet as someone involved quite heavily in the community, I don’t think it does. Although diabetes, allergies, blindness all have shared interests and shared activities and are all covered under legislation like the ADA, other things are incredibly diverse: we have different beliefs about our condition, treatments and techniques, advocacy efforts, and so much more.

On the other hand, I have heard the term “disability culture” used many times. So perhaps I am wrong in my thinking. But, disability culture would apply to commonalities between all disabilities, not just a single one. So maybe there needs to be something like a “chronic illness culture” for those of us living with chronic illnesses, of which diabetes is one.

I do think unification and cooperation and solidarity and awareness are good things, though. Especially if they apply to and draw in all types of diabetes.

4 Likes
9

@Terry4 this is the type of knowledge this is so helpful to me.

I would never want to advocate and create more harm than good. This is my purpose for asking and it also is one of the many reasons I am happy to be part of the community.

It is impossible for me to do my job without your input. I also struggle with those who don’t feel I have the right since I haven’t been diagnosed with diabetes.

Thanks for your response.

1 Like
10

@jojeegirl I actually really appreciate your involvement in this community as a care provider. I wish more people who work with PWD tried a bit harder to familiarize themselves with the ins and outs of this disease and its impact on our lives beyond just insulin/medication doses.

With that said, I also understand where those people are coming from. It’s a fine line to be walking at as people with diabetes are the ones who experience everything first hand, it’s hard for us sometimes to hear an outsiders’ perspective and I think you have to be very sensitive to it.

I know it’s not the same, and I hope I’m not going to offend anyone by saying this (and please let me know and I’ll delete it), but I’d like to compare it to a white, straight and male person commenting on issues regarding minorities or women’s rights, or LGBTQ. While this person might view themselves as an ally, they must understand their voice has to come second to the people who actually experience discrimination or any hardship firsthand especially (and unfortunately) since in our society minority’s voices don’t carry as much weight and it must be changed. This group is the same only in the sense that it gives us a voice in a world where we have to deal with people who don’t share our experience all the time and the consequences of those interactions on us can be taxing.

4 Likes
11

@MakaK,

Perhaps this is why I relate?

3 Likes
12

I find it interesting that a diabetes educator is looking to those with diabetes to educate them.
Being one who deals with diabetes myself, I find the strength in myself, rather than I those who wish to teach.

Just a point I am gay male father of two who came out in the 80’s
And successfully recreated my life with a male partner.
Which has absolutely no bearing on my ability to understand or deal with being a person with diabetes.

1 Like
13

Sometimes I don’t know what the diabetes community expects or wants. We seem to get upset when medical professionals don’t listen, and yet also (as many on this site seem) upset when they do try to engage in dialogue with us.

1 Like
14

Yes I agree on that point,
but I personally i believe the current poster is only interested in self promotion.

I am also not sure she is classified as a medical professional, but I could be wrong on that.

15

I actually suspect your ability to “recreate your life with a male partner” has a lot to do with a core sense of self that has helped you be sure of yourself in managing your diabetes.

I am self-taught and have recreated myself several times, “necessity being the mother of…etc”. But I admire the desire to learn wherever it appears. I admire the desire to get better at what one does–in almost any field—most especially as regards this scourge we all must manage.

Not everyone is able to even imagine recreating themselves—and if you think on it, it is part of what every newly diagnosed diabetic must figure out.

So though I have never actually met a diabetes educator face to face, I have found the posts of @jojeegirl to be remarkably delightful wherever I encounter them. As far as I can tell, she is a pro who would actually like to improve the lives of those she counsels. Rather wonderful, actually.

Good for us that we don’t need her direct advice at this point in our lives, I still find her a fascinating and sincere member of our community, and I would never be so presumptuous as to say I would never need her advice…Hehe–I don’t know everything, I’m getting old and fighting 3 other chronic illnesses, and by gum, I can see a time now when I’m going to need advice from darn near everybody!..Onward—that’s my current mantra!

9 Likes
16

I think we should all be humble enough to admit we don’t know it all. Yes, I do know how to work around my diabetes at present, but that is not to say I will in the future. I am grateful for every bit of knowledge I gain through reading the posts on TuD.

1 Like
17

Actually it is this sensitivity that has often made interactions with healthcare professionals in the DOC difficult. In the early days we would have health care professionals come “save us.” The old model where the healthcare professional is at the center of the diabetes team and makes the decisions is long gone. We want patient centered care and we as patients can be well very informed and very astute at making our own decisions. And don’t need just medicalized treatment. @askmanny always used to say that diabetes care was like a chair with three legs, and it was just missing that fourth leg to be complete, that fourth leg is emotional support.

It is my hope that we have grown up as a community and we can be more accepting of healthcare professionals amongst us. We should always wish to learn more, but even more important this is an opportunity to engage in a discussion with people outside our community. We can change peoples perceptions and thinking about diabetes and help them understand what it is like to have diabetes. And it has been my experience that healthcare professionals have also been dramatically changing. I have attended AADE twice now and it is clear to me that many healthcare professionals now see the patient community as a place that they can really learn.

I think we all have a mission to advocate for change, particularly in how diabetes is understood outside our community in the public and by healthcare professionals.

6 Likes
18

@Judith_in_Portland

I thank you for your kindness and understanding Empathy is so very important.

2 Likes
19

There was so much in your post that resonates with me; I find it difficult to extract the right bit to reply to. In my head, I’m not disabled. In my head I carry aerospace grade life support as I make my way through the cosmos. Ahem, well. The ADA classifies me as disabled for the purposes of lawyers, judges, etc. Because Congress hasn’t got a single person on staff who can come up with a snappier name, I guess.

I’m not sure there is an insulin culture. I don’t have a CGM, so that means finger sticks. I don’t feel like there’s a finger stick culture who support my aspirations to be able to test my BG in every public setting. That said, I’m not sure what could be done to raise awareness except for actually testing in public, actually injecting in the open, where people will see it. Maybe I ought to talk to the people around me before I pull out the lancet, tell them I’m a diabetic, explain that the impending finger stick is part of my almost-bionic life support, so they know its coming. Then they could watch, or avert their eyes as they wish - not be surprised by the CLICK and five-count.

What does the community think about raising awareness? Could it be done by ad campaigns? Images of vials, syringes, clear tubing, sporty black pumps? I honestly don’t know.

1 Like
20

@Buck Thank you for responding to my post.

In order to clarify, I don’t think people who are part of a population that uses endogenous insulin, as being part of an “insulin culture” as you describe.

What I am attempting to describe is a way of being or a shared perspective that is common to a population that shapes how the individual views, lives and exists in the world.

As an example, populations who rely on wheelchairs. While much still has to done to make life easier for those who rely on a wheelchairs, I think it is fair to say (and without being presumptuous and being the spokesperson for people who rely on wheelchairs) they all have a shared experience of life in a wheelchair. And I would believe that factors such as, age, gender, would certainly shape the individual’s world view. I’d be curious to know what are the commonalities that would constitute “culture” beyond the wheelchair or for that matter beyond the necessary medical devices you all need to use in order to live?

I hope I’ve made my thoughts clearer this time.

Thank you so very much for your perspective

1 Like