Deconstructing diabetes stigma: A panel discussion

[00:00:00] Scott K. Johnson: ​ Hello and thanks so much for joining us today. We have a really great panel lined up and I’m just thrilled to help shine some more light on the topic of stigma in diabetes. Now we do have a lot of ground to cover but before we get into the discussion I’d like to first thank each of our panelists and maybe ask everyone to share a brief introduction before turning it over to Dennis to get us started.

Mari, would you please start us off?

[00:00:36] Mari Ruddy: Sure, I’m Mari Ruddy, and I’ve had type 1 for 42 and a half years, and I also have been apparently living non-stop with breast cancer for 19 years. My third diagnosis just happened a couple months ago. I am an athlete, I just wrote a book called Extreme Healing (affiliate link), and it’s great to be here with all of you.

[00:01:09] Scott K. Johnson: Thank you, Mari. We really appreciate it. And, we’re, sending our good energy and prayers and to support your, journey. Riva will you? Share.

[00:01:21] Riva Greenberg: Sure, Scott. I’m Riva Greenberg. I’ve been living with type 1 diabetes for 51 years, which amazes me. I know everybody here in this panel, although Dennis is new for me, and I’ve been working in the diabetes space for the last 20 years, written three books, hundreds of articles, still write a blog called Diabetes Stories that you, Scott, were one of my first adoring fans.

And, I’m really passionate about helping people see that they can live from a more flourishing place and improving the relationship between those of us who live with diabetes and our health professionals.

[00:02:04] Scott K. Johnson: Great. Thank you. We really appreciate you, you being here. Renza…

[00:02:10] Renza Scibilia: Hi everybody. Oh my goodness. I feel like a newbie. I’ve been living with type one diabetes for 25 years, which really, I feel quite pitiful, on on this, call today. I am in beautiful Wurundjeri country, in Australia, which, is. Melbourne I have been working in diabetes organizations for the last 21 years, in a variety of different roles from policy to advocacy to communications, and community engagement.

I write at Diabetogenic and I’ve written a lot of articles and I spend a lot of time talking about how stigma impacts people with diabetes. And, I’ve been doing that for a very, long time. And, I think that it’s just so important that we do continue to talk about this and to understand just how harmful it is.

So I’m thrilled that we’re, doing that today.

[00:03:02] Scott K. Johnson: Great. Yeah, and we’re thrilled to have you as well. Thank you. my name is Scott Johnson. I’ve lived with diabetes for 43 years. And, also been involved in the diabetes social media space and industry for a long time. currently in the midst of a layoff, so I’m trying to figure out what I’m going to do next.

My fingers are crossed that it’ll be in the diabetes space as well. I feel like my work is not finished there. But, in the meantime, it gives me some space and energy to facilitate and, again, shine additional light on this important. I’m really glad to be here and, appreciate again, all of you making the time and space for it.

And with that, Dennis, I’m going to turn it over to you, share a little bit of your story, and, get us going

[00:03:53] Dennis Goldensohn: I am a juvenile diabetic, and now I am a T1D because that has changed the definition of who you are. And, January will be 56 years being a juvenile diabetic. And I have seen going from Lente U-80 insulin, either pork or beef and using the strips to test and no pumps, no CGMs, no A1Cs. They gave you, gave me all the stuff, and the syringes were the BDs, and they were 24 gauge.

Ouch! not 33 or 34 gauge. So I have seen through close to six decades, a transformation in this, but the, whole thing is, that the technology has come a long way, and the treatments have come a long way, but yet to have a total cure or to have some type of good, treatment for a diabetic is also to have the mental capability to deal with the subject of diabetes.

We all know if you’re using a CGM. And you have a watch on, you’re constantly watching the watch, the cobs, you speak to your doctor, he’s telling you what to do. So it’s, at times it’s a lot of overload of information and people who are not mentally stable or capable of dealing with these, these parameters, the pumps and the CGMs don’t do any good because they can’t handle all that because of their mental state.

So we’ve done a great job on the technology end. Why is it that you think that this issue of stigma and psychological and mental issues still exists? You would think by now, after all of these decades, that this would have been addressed and at least some way some form of education and treatment would be available.

So I’m gonna open it up to all of you.

[00:06:09] Renza Scibilia: Oh, wow. Can I jump in? Just because silence makes me

[00:06:14] Riva Greenberg: Please do.

[00:06:16] Renza Scibilia: that is such a, whoa. So I think that needs unpacking a little bit because I think that if we’re talking about the emotional sides and the, the impact of diabetes, that is A lot. and stigma absolutely feeds into that and impacts it, but I think that we need to separate them a little bit because, stigma is something that a lot of people experience, but certainly not everybody with diabetes might necessarily feel that, stigma’s there all the time, I feel.

But I think that for me as a person living with type one, there are times when I really feel my emotional health is really, impacted, but there are other times where I feel really robust, and I feel that it’s not, even if I, and the way then that I deal with stigma is very different, right? So if I’m feeling really robust and resilient, if I hear a stigmatizing comment, it’s a bit like water off a duck’s back, right?

So I can deal with it. I can make a comment about it. I can say that’s not okay. I can talk about why it’s not okay. And then I can move on. But if I am feeling really burdened and overwhelmed by my diabetes, hearing a stigmatizing comment feels like a kick in the gut, right? It becomes, it adds even more to that burden.

And, I don’t know how to deal with it necessarily. So I guess, my point to start is that for people with diabetes, our experiences are so different. But I think talking about mental health is probably, while there is obviously an impact with everything, I think it probably is something a bit different to discussing stigma and what we can be doing about that and how that impacts things that have been happening globally, to address it as well.

[00:08:07] Riva Greenberg: let me play off something Renza just said. Of course, I agree that mental health is one thing, and stigma is another. But something you raised is an interesting point I had thought about in preparation for our conversation. I think when we think about stigma, we’re always looking at what can we do so that the public doesn’t stigmatize us.

[00:08:34] Dennis Goldensohn: Mm-Hmm.

[00:08:35] Riva Greenberg: Change attitude, educate, change policy, and that’s all great. But something we really don’t talk about, which I think is equally important, is what can we do so that people living with diabetes themselves don’t take on something meant a stigma, and that’s what you said in passing, Renza. When you’re feeling robust and resilient, you really don’t take it off.

Take it on. It just shakes off you. So I think one of the areas we really haven’t looked at all is educating people with diabetes that it’s not their fault. That they’re not responsible. Because it’s all this really self-shame and blame. That causes people to feel stigmatized, right? If you didn’t feel that shame and blame, it really wouldn’t matter what anybody said to you.

It would just roll off your back.

[00:09:37] Renza Scibilia: I think, though, where there is the added element to that and where it comes beyond how we feel about it, is that even if we are feeling robust and we think, oh, it’s just water off a duck’s back, I don’t really care. Often, at that point in time where, I’m more determined to deal with the stigma externally, right?

So that internalized stigma is really important, and we do need to address that. But it’s at that moment where I’m ready to really dig deep and double down and say, hey, those stigmatizing comments, they actually do have a trickle-down effect. It means that fewer people are willing to donate to a diabetes cause.

We get less research money from, government research bodies. All of that stuff. So, there is a really big impact when we talk about stigma. It’s not just about, oh, you’re hurting my feelings, and I’m a bit of a precious flower. And I think that’s one of the things that people think is, who cares?

As long as you’re getting the right treatment, as long as everything’s fine, who cares about how people talk about diabetes? Who cares if people stigmatize it? It does matter because there are these trickle down effects that really do impact how the world sees diabetes. And, of course, that then impacts how we see diabetes.

And it also will then. I think results in this thing about, the way that people with type 1 diabetes may respond to people with type 2 diabetes and it actually really becomes, it is such a huge thing and it just like collects bits and, more and it just becomes so huge.

I feel that for me as a person living with diabetes when I’m feeling. More or less burdened there. That’s the time where I’m willing to really dig deep and say, hey, this is not okay. And this is why and get into that detail.

[00:11:29] Dennis Goldensohn: Yeah. I found that when I became a diabetic and I was 16, and they said, you’re gonna see an endocrinologist. An endocrinologist. What is that? Dinosaur? I really didn’t know what that was. But anyway, I was determined at that point it was not going to stop me. And I think, like what you just stated, I don’t care what anybody said, but that’s me, that’s my mental thought process.

It’s not going to do anything to me, I really don’t care. I was fortunate in my job, we had 10 buildings, we had 10 emergency medical teams. They were all volunteer firemen and EMS workers, and what have you. And they found me running around one of the buildings, a hypoglycemic reaction, and they finally got me up and running and everything.

What happened? 20 closet cases came out of the woodwork out of every building saying, you’re diabetic? Yeah. Are you? Yes. Then what I had is I had lunch and learns about it because at the time I was doing work for JDF Juvenile Diabetic Foundation were what was founded by a few families because their children wound up with type 1 diabetes and I said if you really want some information, not some medical advice JDF and then I did work for DRI, Diabetes Research Institute in Florida. And I learned from them. And I really didn’t care about, should you eat that, shouldn’t you eat that, it’s your fault, whatever, all the nonsense that you hear. But when somebody asks me what’s on my arm, that’s my opportunity to take a positive approach and say that’s a CGM, that’s an Omnipod, and this is the way it works.

So, at least when that person walks away, we become change agents, and we change their minds so that they can become more affluent in what we use as language in treating our diabetes.

[00:13:43] Riva Greenberg: Yeah, I agree. I love to use those interactions as education points. One thing I think we should raise from the start, is this idea of language, right? You mentioned it, Dennis, and I know Renza has been very, active in the Language Matters movement. And one of the words we don’t tend to use is diabetic.

It’s actually one of the words in the treatise of Language Matters because it reduces people to their condition. And it’s interesting how ingrained it is, not just in the public, but even amongst us, that, sometimes, we don’t think, and it comes to mind, but I do think that’s, been a very valuable step forward, addressing stigma, addressing language, when, health professionals talk amongst themselves and talk about their patients, and they think that, somebody they’re treating with diabetes is non-compliant and non-adherent, and that’s the language they use among themselves.

They’re sustaining a picture of us, right? And it’s not helpful at all. In fact, it’s extremely unhelpful.

[00:15:05] Dennis Goldensohn: And I think social media adds a bunch of this stuff to it as well because it’s non-controllable. It’s an open season. It’s like going out there getting shot, and you don’t even know you’re a target. And all of this nonsense keeps on floating around on social media. And kids, they pick up on this stuff, they, they become attuned to it.

And it’s harder for them because they’re being exposed at a very early age, and to shift the paradigm with them is even more difficult at that particular time.

[00:15:46] Renza Scibilia: I just want to jump in and say I agree, obviously, Riva, with you about language, and I think that’s really important, and I saw Mari agreeing as well. But I do think, and I, this is something that I feel is really important to mention, that as people with diabetes, which is the language I use, we can refer to our diabetes however we feel comfortable.

And I think that’s something that is really important to mention because language does matter. It matters hugely. But one of the things that I find so frustrating as somebody who has been talking language for well over a decade now and the impact of it and the importance of it is that we get so stuck in the person with diabetes versus diabetic, and I can call myself whatever I want, and we need to be really clear that people with diabetes, we own our diabetes and we can refer to it how we want about our own diabetes.

The reason that I point that out is because I have been involved in too many conversations where we lose why we need to address language and how language and the language discussions in the community actually were stigmas become language 2.0 in some ways, we now understand the impact of language and stigma and how it all feeds into each other, but we get lost in this, but I’m comfortable calling myself a diabetic.

Awesome. Your diabetes, your rules, you do what you want. It’s when we have people who are using the language in a derogatory way, as in you’re diabetic, you can’t eat that. Or in ways that really minimize our experience, and that’s where we’re talking about why language matters.

But I just want to say this upfront so that anybody watching doesn’t start rolling their eyes and saying these are just people who are politically correct. I wanted to call myself, whatever, knock yourself out, you’re diabetes. You can call yourself late for dinner for all I care, do whatever you want.

But, just understand the impact of how language really adds to the stigma and the attitudes that people out there have about diabetes.

[00:17:59] Dennis Goldensohn: We know that when you write an email to somebody, and you don’t see the body language, and you read certain keywords in the sentence, don’t you think that somebody doesn’t like you, or somebody doesn’t agree with you, or somebody hates you. And then when you call them up and speak to them saying what did you mean by, Oh no, I didn’t mean that.

And I was just. It’s the same thing. It’s the same message that comes across. It’s like playing telephone. You start out with 20 people. By the time the message gets to the 20th person, it’s all different. So I agree we need to do a better job in the description and the way we discuss it. And like you said, if you want to be called a diabetic, that’s fine as long as you’re comfortable with it.

But when people utilize language in the wrong context, That’s when it becomes a problem, I think. Does anybody else want to comment on it?

[00:19:00] Scott K. Johnson: I’d love to hear Mari’s thoughts on this, given you have a very unique position encountering, not only the healthcare space from multiple diagnoses, diabetes, and cancer, what’s your experience like with the cancer side of things in terms of the language used there?

[00:19:23] Mari Ruddy: it is really fascinating because personnel definitely use language to minimize their emotional relationship, I think, with their patients. It’s fascinating because, having now been in the cancer world for 19 years, I’ve never been called a canceric. Never. And that was the big turnaround for me about not wanting to be called diabetic. Because I don’t, like Riva said, I don’t want that to be my first identity. The first identity that I am drawn to is to call myself an athlete, who then has diabetes and cancer, and both require a fair amount of attention and navigation. So that is part of, for me, What I think about in the language I use.

And language, I agree, is really important. One of the things I did was create the Red Rider program, which is used for all Tour de Cure bike rides and walks put on by the American Diabetes Association. One of the key things I wanted to create was a positive association with living well with diabetes, whatever kind of diabetes the person had, whatever that meant, but being on a bicycle with other people who care about taking care of their health was worth celebrating and to create an identity.

And I asked everyone who had diabetes to wear a Jersey that said, I ride with diabetes. And I thrive with diabetes and to call it out so that it would be recognized because diabetes, like cancer, unless you’re bald, which, Scott, I’ve been bald. is not visible and to intentionally call it out and to call it out positively so that you’d have at least a few hours once a year where you were celebrated for the effort that it takes to live well.

[00:21:55] Scott K. Johnson: It was such a big part of my participation, Mari, I just, I have so much, I, thank you so much for getting that going because it was really a special part to be celebrated as, someone living with diabetes during those events. I love it.

[00:22:11] Mari Ruddy: well, and that, and the connection that happens between the people who have diabetes, like one of the stories I tell is that previous to starting it, I’d be out there at a Tour de Cure bike ride and I couldn’t tell who had diabetes. So I’d ride up next to people and say, do you have diabetes? Do you have diabetes?

And it was so like, are you really asking people if they have diabetes? Are they going to admit it? And I’m like, I don’t care if they’re going to admit it. I’m going to ask. Because if no one asks, then how can they respond yes or no? And I was surprised. A lot of people were like, yeah, I do. I’m like, I want to know that so I can celebrate you. So that’s part of the whole thing about identity and having a sense of belonging and being connected and not separate and not isolated with this thing that you caused or didn’t cause. So Yeah, so that’s a big part of it for me.

[00:23:15] Dennis Goldensohn: know, that, that leads into the second section of the conversation. The two, two things. shame, it’s my fault, and loss of confidence. where people say, it’s my fault. I listened to the congressional committees. There was a gal on there where her son had a ration, the insulin, and he passed away.

And you, you must’ve read the whole story. And one of the congressmen in the Senate says, if they would have got out and exercise and they would have done this, they wouldn’t have done that. And I’m telling you, if I would have been sitting there at the table, Renza, you and I would have had a field day.

I would have just say to him, are you kidding? Or do you know what it is? Do you know it’s an auto immune disease? And there’s, one, report, where it says nobody chooses to be diabetic, right? So these are the, issues about what diabetics experience. They think it’s their fault. Loss of self confidence. And then when we ask them to manage it, whoa, it’s like a, it’s like a big burden. and I think that’s the place where we need to give positive reinforcement. It has to be, we just can’t talk about all the negatives all the time. Cause we talk about, we self defeat ourselves.

We just put ourselves, we become the enemy and we’ve met it and we drag ourselves down. And it shouldn’t be. As long as it’s heard from others, it’s quite difficult for them to tune it out in their filter process. Any other comments on this or anything? I think we could talk about this until the end of time.

The third point of the agenda is the research part. And I have to tell you, Renza, you folks down in Australia do some kind of a job. I read the full 245-page report on the National Diabetes Service Scheme, the NDSS, Diabetes, and Emotional Health. It was quite eye-opening, but what was good about the report was that they have a process.

I’ve always said that diabetes is a management issue. You don’t control it; you manage it. And through better management, you have better control, because control is an output. And it was really amazing to listen to all of the, case studies, type one, type two. And I think anybody who’s listening to this, podcast, we’re talking about type one and a half, and type two.

And I think, Renza, you bring that up all the time. We’re talking about all diabetics, and we’re not sectioning it off by what type of diabetes they have. With all these reports what have we learned from all of these reports from those who have listened to them or have participated in them on how to move forward based on the outcomes from all the R& D that has been done?

[00:26:35] Scott K. Johnson: Renza, this is calling for you.

[00:26:41] Renza Scibilia: Yeah, I have so many thoughts, and look, we’ve got the most incredible panel here, but we all are coming from a very, type one perspective. And the type 2 diabetes perspective when it comes to stigma is really different. I don’t want to speak for anybody with type 2 diabetes, but. What I will say is that as a person with type 1 diabetes, I did a terrible job early on stigmatizing people with type 2 diabetes as I was tripping over my own feet to make sure people understood my diabetes is different. My diabetes is the one that I did nothing to cause. My diabetes is an autoimmune condition. All of these words reinforced the stigma about type 2 diabetes. And I was the spokesperson for our National Diabetes Organization for a very long time here in Australia. And I learned how to make sure that when somebody said to me, tell me the differences between type 1 diabetes, because they’re the main two types, and I know, people with gestational diabetes have completely different attitudes and different experiences of stigma.

People with MODY have different experiences of stigma, often that they just completely get forgotten, so absolutely, there are different types, but let’s just focus type 1, type 2. However, as a spokesperson for the organization, I felt very strongly that it was my responsibility not to contribute to the stigma experienced by people with type 2 diabetes.

So, taking it back to basics and being asked to define the different types of diabetes, that’s where we get caught up to begin with. We frequently will say the thing that rolls off people’s tongues: type 1 diabetes is an autoimmune condition. It usually happens in kids. People with type 1 diabetes couldn’t have prevented their type 1 diabetes.

For people with type 2 diabetes, of course, that’s a lifestyle condition. It’s diagnosed in adults. People need to move more. They need to eat less. They can put they can cure their type 2 diabetes. All of those statements. Apart from the one about type 1 diabetes being an autoimmune condition, are actually, incorrect.

Type 1 diabetes doesn’t happen mostly in kids. It is half, half the people diagnosed with type 1 diabetes are adults, and the vast majority of people living with type 1 diabetes are adults. type 2 diabetes is diagnosed at all ages. By saying that people with type 1 diabetes did nothing to cause their type 1 diabetes, which No one deserves diabetes.

We couldn’t have done something that would have averted that. What we’re saying is that people with type 2 could have. Type 2 diabetes is so complex, and people with type 2 deserve the right definition. The starting point deserves to be right. So, there is so much that needs to be addressed when we’re looking at how we communicate about the different types of diabetes to get it right from the start.

And you know what, it’s not until we started really listening to people with diabetes, with all types of diabetes, that we actually started understanding and accepting just how important it is to get it right, and when we don’t, just how harmful that it can be.

[00:29:58] Scott K. Johnson: I so appreciate all of the research work that you all have done. We know that research is a slow game, right? We know that it’s slow and, takes a while for one, the research to happen, the research to be published, the research to be read and implemented, hopefully, at the different levels of practice.

But I also think it’s one of the biggest levers we have in terms of reaching more people with diabetes, right? So, the group of us here is strange in the diabetes world in that we’re very engaged, and we think about diabetes a lot. And we do stuff around diabetes, but for the majority of people with diabetes, their only touch points are their healthcare providers.

And they don’t happen very often and not long enough when they do happen. Figuring out how do we get these messages out to more people. It’s a big deal.

[00:31:13] Riva Greenberg: part of this idea of looking forward, and by the way, yes, research is a very slow process, and everybody wants evidence, and everybody wants statistics, what’s a very fast process is common sense. It’s pretty much common sense. If you don’t treat people well, you won’t get good results.

It’s pretty common sense that if you’re kind and compassionate, you will have people more on your side and aligned with you or follow what you say. When you look at what needs to happen, I think what needs to happen around us, and I slightly referred to this earlier, but our health professionals, as you pointed out, Scott, that’s where most people with diabetes get their touch point. They need to work with us in a way that helps make us feel supported and confident. I think they look at a person who walks into their office with diabetes, and they already feel, Oh God, another one. It’s as much as they went into medicine because they want to help people when they’re dealing with chronic illness.

They have no particular training, so they’ve got to untangle all the issues that go on with diabetes and all the side by side, blood pressure, blood cholesterol, every, the heart disease, all the things that can come with this condition and it becomes a numbers game in so many ways, rather than just being compassionate with the person who’s just walked into their office and setting them off on a, more positive foundation.

And then, when you look at the environment in which we live, we all live in places where it’s a Western capitalist society, and food manufacturers want to make lots of profit, and policy change is difficult. And we’re swimming in a world where there are all kinds of things in our food system. That doesn’t promote health, but promotes profit.

So we don’t make it easy for people to stay healthy. We make it easy for people to get sick. And if you really want to talk about changing things, then we have to change these types of things.

[00:33:51] Dennis Goldensohn: Yeah,

I agree because if you see what people consume on a daily basis, a lot of it, and I’ve become much more attuned to looking at labels, they may not be accurate to the nth degree, but if you see rice and it has 50 grams of carbs in it. You should think about that as taking care of your diet.

But the other issue is, and I guess we’ll get into it, is the training, being told. Don’t do this, don’t do that, don’t do this, don’t do that. That’s the easy way out. You have to explain why that is, why certain foods digest quicker or slower, and why certain foods have more of an effect.

Fat doesn’t have any sugar in it, but yet if you consume a lot of fat during your meal, you have to bolus for it, right? So these are the issues. That the diabetic has to deal with, or people who have diabetes and need to know really the science. Because this is my take on somebody who has diabetes.

They are a doctor, right? They have to examine what they’re doing every day. They have to make decisions. They’re a nurse because they take medication. They also are a trainer. They have to get out there and do their exercise and everything. They also are some kind of psychologists. They have to sit, and I always say, you, you, you, observe. And you reflect on what you observe, and then you do continuous improvement. This is part of manufacturing, Lean Six Sigma, right? And people need to be able to do that so that they can be a good resource to themselves. You have to, if you don’t like yourself, nobody’s going to like you. So if you are as a, you’re having diabetes, and you don’t appreciate yourself, then managing your diabetes has become a very tough scenario to deal with.

And I don’t know where all of you come in on this thought process, but I just feel that it’s management. And you need to have the mental capacity to do that.

[00:36:25] Renza Scibilia: I think we put so much personal responsibility on people managing their diabetes, which is fine. We’re living with it. I get that. But that only works to a point, and Riva’s points earlier were really important actually because while it is easier, it is easier to make the healthier choice.

We’ve already got the cards stacked completely against us, right? So, if you live in a food desert where finding fresh foods is really hard or extraordinarily expensive, which it is, and the only thing that you have on offer is processed foods. Or if you are not sure because you’ve never been shown how to prepare foods from scratch if you live in places where it is not safe to be physically active. That means that all of those things that we are told to do to be healthy are really hard. And then, when we don’t achieve what it is that we’re meant to be achieving, we’re not doing our 30 minutes of exercise a day. We’re not eating five, five servings of fresh fruit and veggies every day.

It’s our fault. We’re non-compliant. We’re not doing what we’re told. And I can’t tell you how many conversations I’ve had with health professionals about this because I’ve heard health professionals say, I’ve told them they just need to take a 30-minute walk every day. That’s all they need to do. And when you think about it, a 30-minute walk, why, of course, you should be able to do it.

Of course, we should, but let’s break it down. And we break it down to when this person is expected to be able to do it. When do they have 30 minutes in a day where they’re able to do it? And often, it might not be until. It’s dark, and they might not live somewhere where they feel safe going for a 30-minute walk or even a 10-minute walk.

They may not live in a neighborhood where there are safe footpaths that are well lit, sidewalks, sorry, that are well lit. They may not have the environment around them. And so until we live in environments that are easy for us to make a healthier choice, we have all the cards stacked completely against us.

And that makes it really difficult. So personal responsibility, of course, is important. It’s our diabetes, but it makes sometimes it is just so hard to do the healthier thing that will help our diabetes. And while I’m not trying in any way to say it’s all so hard, woe is me, we should be pitied; that’s absolutely not what I’m saying.

But what I am saying, I’ve said this recently, in fact, I think I said this at the launch of the stigma campaign, I don’t want to see another prevention campaign about type 2 diabetes until I can be promised that the environment, the people with type two diabetes who are seeing this prevention campaign, where it’s absolutely the easiest choice for them is to make the healthy choice.

Because until then, you’re putting all the blame on the individual and none on the policymakers, none on the local councils, none on the people who actually can do something at a level that’s going to make it easier. It all comes back to personal responsibility. It’s not, that’s just ridiculous. We’re never going to change and move the needle if that’s the case.

[00:39:37] Riva Greenberg: and you know that’s part of the causal reason for that? We live in societies that stress individuality and individualism over community. So, we talk about self efficacy, but not social efficacy. So that lets all our social systems off. And even I used to think DSMES, Diabetes Self Management Education, is all about what I do, what I don’t do, what I learn, and what I don’t learn.

So, it leaves out support from other people who could be helping me. It’s really interesting. I, there, there’s no simple issue here. We started with stigma, but nothing is simple when you start unpeeling the onion of how many things are connected in people living with this chronic illness and, what society’s effect counts, what professional health professionals affect.

Peels layer and layer and layer upon. I remember when I was writing my first book about diabetes, and my aunt, who had type two, said to me, what is there to say? I said you could not believe how much there was to say. So anyway, it’s a really complex issue, and it’s not going to get solved simply.

But it will certainly stand a better case and chance of getting solved when we have discussions like this, and people who are willing to work in advocacy and make policy changes and bring a whole lot more common sense to the issue.

[00:41:37] Scott K. Johnson: Yeah, those are some very good points, Riva. And with that in mind, I want to do just a quick time check and check in with Dennis. So we’re. At about 40 minutes, and I want to respect everyone’s time too, where do you want to go next with this conversation?

[00:41:52] Dennis Goldensohn: to something that’s really positive. Riva, Renza, I want to thank you so much. And this is the pledge. I signed up for the pledge. Immediately. The questions are: What does it mean, and why did this come about now? Who should be involved and why? How do we get involved and make this the rule and not the exception?

And what should we expect as an outcome of taking the pledge? So basically, the start, the middle, and the end.

[00:42:31] Renza Scibilia: Sure. Firstly, a massive shout out to the Australian Centre for Behavioural Research in Diabetes, which is just as it sounds. It’s a research center that is dedicated exclusively to behavioral research in diabetes. This was set up, and I think it’s about 15 years ago now. It’s a partnership between Diabetes Victoria and Deakin University.

At the time that it was established, I was working at Diabetes Victoria. The CEO was a man named Greg Johnson, who really recognized that we don’t talk enough about the behavioral side of diabetes. And he knew that was something that was happening in the cancer space. And he wanted to make sure that happened in the diabetes space as well.

And so he set up and established this center, and the foundation director who is still the director is Jane Speight, who is a health psychologist. Originally from the UK, but we have claimed her as one of our own now. She is very much an Aussie. And it was Jane from the ACBRD and Dr. Liz Holmes-Truscott, who is also a health psychologist at the ACBRD, who led the work on the development of a consensus statement to end diabetes stigma.

This was a big piece of work, and the timeline to get it launched by World Diabetes Day was quite remarkable, considering it involved a panel of 51 experts from across the world, from 18 countries. And a third of those people were people living with diabetes. So when we’re talking experts, we’re talking about lived experience being very much central to this work.

And what this did was that it looked at all the evidence out there and then provided recommendations about how to end stigma because we know it’s there. We’re not just addressing it. The commitment that we’re trying to make is to end diabetes stigma. And we felt that what we really needed to have an even broader community engagement around this was to have a pledge that was to say, yeah, I’m signing up to this. I am committed to ending diabetes stigma, too. Individuals could sign, and you don’t have to have diabetes. Anybody can sign. And the thing about the pledge that’s great, that there are just half a dozen or so, I think it is really very clear things that you can do to end stigma.

And organizations can sign up as well, and they sign up to exactly the same pledge. And that is about doing things like calling it out when you see it. It’s not using fear-based messaging, which we know contributes to stigma. And I think that’s a really important one because diabetes organizations, and I raise my hand to someone who’s been guilty in the past of this, we used to do some pretty horrible campaigns that did stigmatize people.

They absolutely did. And there’s some research coming out now, actually, that shows just how stigmatizing and harmful those campaigns were. It’s also about using language that makes people feel included and part of the conversation rather than excluded. So the reason that we felt that a pledge was an important part to go with the consensus statement, which has now been published in The Lancet, by the way, which is so exciting, it was launched on World Diabetes Day this year, is so that people can see it’s actually not that hard to do.

It’s actually not that hard to be aware of what stigma is and to do what you can as an individual to end it or what you as an organization can do to be part of the solution here. So I haven’t actually checked to see what the latest numbers are, but there are more and more people signing up every day, and we would encourage everybody to share it with their networks.

And if you go to enddiabetesstigma.org, you will find all the information there. And really just highlight, it highlights not just why this is such an issue but also what individuals and organizations can do about it. And it’s getting the conversation going. And I think, again, that a big part of it is that we have to have people understand that stigma is very real.

Four out of five people with diabetes report experiencing stigma. That’s the very vast majority of us. It’s everybody’s responsibility to make people with diabetes not feel stigmatized. And we have to do, we have, we, it’s everybody’s responsibility. Everybody has to have buy-in and to be an ally here.

[00:47:21] Scott K. Johnson: I would like to say that I really appreciate the toolkit of sorts that helps me know some easy things I can do when I feel like I don’t have the energy to fight back against stigma. Here are some easy things I can do to make a difference there. Thank you for making it easy.

[00:47:50] Riva Greenberg: I lately stumbled over a woman. She wrote a book recently that’s been released called Free (affiliate link), and I’ve been reading about her and watching some of her videos. Her name is Lea, and her last name is Ypi. I spell it because I’m not sure how to pronounce it. And she’s talking a lot; she’s a philosophy professor, and she’s talking a lot about politics and the state of the world.

And while she doesn’t talk so much about which system our countries should be following, she does talk about moral responsibility and moral relationships and the idea that if we were. If we were morally responsible in the choices and decisions we make and looked at our way in relationships with each other from a moral point of view, then our societies would be better.

And she just came into my head listening to you, Renza, because this idea of stigma, when you said, let’s each of us do what we could do, It’s about moral responsibility and moral relationship, that we are looking out, not just for ourselves, but for each other, whoever the other is.

[00:49:15] Dennis Goldensohn: Okay, moving right along, there are issues with awareness, shifting the paradigm, finding change agents. We found that in lean manufacturing, it wasn’t so much the technology, it was changing people’s minds to shift the paradigm so that they think about teamwork, value added, and what have you.

Seeing things with a different set of eyes, a different set of lenses, meaning shut down the negativity, we always say never leave a meeting mad, give the other person an opportunity to make a suggestion, and if it doesn’t work, we said we tried, and we thank you for your suggestion. one of the things that I did is I did mentoring.

I did it for JDRF before the pandemic, before they shut down a lot of things because they didn’t have the revenue coming in. I had a gal that was about 75, 77 years old. She was LADA diabetic. They thought she was type two. Eventually, her pancreas didn’t produce anymore. She went on a pump, she went on a CGM. So they paired me up with her. We met every month on the phone for eight, for 22 months. I did recommend that she goes to the summit we had here in Raleigh. Where they had all the manufacturers for all of the stuff. And we had different flights, all of the different going to college, eating, and all that stuff. And when I saw her at the end, because I do photography for JDRF, I do all the functions and everything. I’m a photographer for 45 years. I said, how’d you make out? She said, this was great. I walked away with more than I ever walked in with. And I said, just shut up. Don’t say anything. I said, this is great.

This is something that worked. Last December, I said, it’s time for our discussion. And she wrote back to me, Dennis, I’m doing pretty good. I got my diabetes in control. The pump and the CGM is working fine. I don’t have too many problems. I think that your time could be better spent with somebody who could really use your assistance, your inputs.

And I wrote back to her and I said, thank you so much. I feel so much gratitude that I was able to be a part of your assistance and learning and everything. And it says, if you ever need to call me or write me, please do. This doesn’t mean it ends. And, I hit return on a keyboard and I cried. I’ve always said, and I did it when I was in manufacturing for kids coming into manufacturing, mentoring them.

Mentoring is the highest value you could have on your resume. Forget about the CPA and all that other nonsense. If you could give of yourself to somebody else, and we had one person helping one person. We would have that many less people that are astray right now. And as we talk about all the issues that we’re talking about stigma, mental and psychological, it would really be a great thing.

They have more people, and I’m a diabetic, so it even adds to it because I have a positive attitude towards it. How do we get this down to the local level? We talk about corporations, we talk about governments, we talk about everything. But the people, they’re on the bottom. They’re, like, I hate to say it, like at the bottom, third class.

Nobody ever comes down from the captain’s lounge to talk to those people down there. So how do we take this awareness and training and support and bring it downstairs to add value to where it should be, where the work is performed? Experiment at the lowest possible level and find out how to help these people. And then, on top of that, to combine it with number six, things that get measured get fixed. We always said that in Lean Six Sigma. If you don’t measure it, how do we measure it when we talk about the pledge? How do we get it down to know? Because if I remember correctly, Renza, you had a thing about the table. You said, just because you put it on the table, It doesn’t mean everybody’s going to come and take it. Dr. Polonsky had a thing where he sent, remember there was a thing, he sent the thing out with all these things for people to come, and they had a 20 percent return on the number of people. And you feel defeated because you thought you were helping people.

So how do we do that? How do we bring it downstairs, and how do we measure what that means so that we can continuously improve it and not make the same mistakes over and over?

[00:54:31] Renza Scibilia: There’s a lot in there. Dennis, you ask such big questions. I think that this is one of the reasons why I am so committed to ensuring, I sound like a broken record, I get it, but real engagement with community is critical. So I think that there is a lot going on at a community level, there’s, there, there are always, there’s that sort of mentoring that you were doing, Dennis, but there’s a lot of really informal stuff happening.

My neighbor, who lives two doors down, has type one diabetes. That’s an incredible support. Just those connections that you might make with people. We know, though, that there are a lot of people who are completely isolated. We also know that there are a lot of people who, where they turn, are to a diabetes organization.

And that is why I am so committed to ensuring that there is real engagement at that organizational level. The first diabetes organization that I worked for lived in the state of Victoria. There were, and there still is, something like 80-something support groups across the state that meet in person.

Some of them are virtual. I went and met a whole heap of them, including one in a rural, remote little town called Sea Lake. And that will only make sense to people in Victoria and Australia. And I sat around the table, and there were four divine women there who all had diabetes, who made me scones and spoke to me about what it was like living with diabetes in their rural town.

And so there are those sorts of things happening everywhere, but when we hear people speaking for us. The messages don’t get through, and this is why I sound like a broken record when I say people with diabetes have to be centered in conversations about diabetes. And when you see that being done properly, that’s when you see real impact.

And we had an example this year in Australia where for some reason the state government, sorry, the federal government and an insulin manufacturer got into a bit of a stoush, and suddenly one of the insulins that we had available here was not going to be available. It was not going to be available anymore.

It took community to start kicking up a fuss, but then JDRF Australia did a stellar job of engaging with community to make sure that the community was being heard at the government level. So, whilst we were absolutely saying, and while community members were writing to their local MPs, the people who often were sitting in front of the health minister were those diabetes organizations. If they don’t take with them, literally and figuratively, people with diabetes, we don’t get heard. And it’s one of the things I should do; as I said, I’ve been working for diabetes organizations for 21 years now. I joined JDRF International at the beginning of this year, working in global access.

So really not working in the Australian space at all. But what I’ve learned about the organization is just how much they really do engage with community. And, this year, we had an example where there was a consultation, and every time JDRF was sitting in front of the health minister, they had a team of people with diabetes with them.

And that is the power of that is incredible. So that’s how it happens. There will only be changes if people with diabetes are part of the conversation and not in a token way. Do not give me a community advisory council that meets four times a year and tell me that is decent engagement. You have to have people with diabetes with the ability to influence at every single level of an organization, and then I know that’s how we make change.

[00:58:17] Dennis Goldensohn: Anybody else want to comment on that? Okay, cool. again, I, I’d like to thank each and every one of you for taking time out of your busy schedule, and I know it’s the holidays, and I always say at every gala, we have a gala coming up in May, that hopefully we’ll have a rock and roll party and say this is the last gala we’re going to have.

. And finding a cure for all diabetics. To your point, not type 1, not type 2, not 1 and a half, but for all diabetes. And then, we can put our efforts into finding cures for other diseases that are out there. I think these conversations are the way to go, and hearing different viewpoints and different ideas is the way to go.

And if we don’t continue to do it, then we’re only defeating ourselves, and we have to not be defeatists. We have to support one another and as we all say, positive reinforcement is the way to go. And, I’d like to thank Scott for putting this together and hopefully maybe in another couple of months we can get back together.

And we can follow up on some of these, and we can have some measurements on this. We could see where the pledges are, how many more there are, and through all of these little blogs and everything, we can hit it, more in more ways so that people get into it. And hopefully, I’m going to be pushing this at my endocrinologist.

She said I could use her conference room to have meetings. I’m gonna give her the, the link once the blog is ready, and I’m gonna try to just start something here in the, Raleigh area to make it happen, but it really takes, people like us to make it happen, and I really do appreciate all the work each and every one you do. So, to end this, I want to wish everybody a happy, healthy, and prosperous New Year’s 2024. And thank you so much for being part of this.

[01:00:38] Scott K. Johnson: Dennis, thank you. Thank you for championing this topic today. We really appreciate it. Mari, thank you so much. Riva, Renza, oh my gosh, it’s just great that you all joined us. Thank you again, and we’ll see you soon.