Teaching diabetes teachers and the language of diabetes with Jane K. Dickinson

She's also the program director of the Diabetes Education and Management master's program at Teachers College, Columbia University. Jane has authored two great books on diabetes and also recently received AADE's Diabetes Educator of the Year award for 2019. Her blog "It's all about balance" can be found at https://janekdickinson.com. And she's been living with diabetes since 1975. I can’t wait to share her story with all of you and the work she’s done.

Summary

• Dr. Dickinson’s diagnosis story
• How she got started with blogging
• How the Diabetes Education and Management Master's Program at Teachers College, Columbia University got started
• How AADEs involvement helped launch the program
• Dr. Dickinson’s award from AADE
• Her podcast
• Why we need to change the language of diabetes

Transcript

Scott K. Johnson: Welcome to another episode of Live With Scott. Thanks so much for tuning in. My name is Scott K. Johnson, I've been living with diabetes since I was five years old, and the diabetes social media space, that's you, by the way, have been a big part of my well being for a long, long time.

Scott K. Johnson: In other words, you are as important to me as my insulin and Diet Coke, and I'm so thankful for you. And I also want to take a moment to just reflect on all the work that you and we do to take care of ourselves with diabetes. It's really amazing things that we do on a daily basis that sometimes can start to feel really normal and regular, but don't forget how much work you're putting into taking care of yourself, I think that's really great, and I think that we need to give ourselves a pat on the back much more often.

Scott K. Johnson: So, as your host today, I am excited to introduce you to a dear friend and someone I've admired for as long as I can remember, Jane K. Dickinson. We'll learn more about what she's been working on, her recent award, and what's next on her agenda.

Scott K. Johnson: But first, last week's winner. Congratulations to Rodney Miller, who just won some fun mySugr swag. We'll send you a message on Facebook after the show to coordinate details. Stick with us to learn how you can win some free mySugr swag too.

Scott K. Johnson: And speaking of Rodney, Rodney does a lot with Bolus and Barbells, and that's something I wanna get you on the show, Rodney, to talk with us about in the near future here.

Scott K. Johnson: Alright, while we get going, please share a quick hello in the comments. Let me know where you're watching from, I'd love to say hello. And if we cover anything that resonates with you, please show us some love, hit one of those love, like, wow buttons down at the bottom. And if you know anyone that might find this helpful, please go ahead and share this with them, that would be great.

Scott K. Johnson: And before we get too far along, I need to share a quick sponsorship message. Today's episode is sponsored by the mySugr Bundle, get unlimited strips, automatic supply refills, personalized support, and more all for just $49 every month. Learn more at mySugr.com/facebooklive.

Scott K. Johnson: Alright. Are you ready to get started? Joining me today is Dr. Jane K. Dickinson. Jane is the author of two great books on diabetes. She's also the program director of the diabetes education and management master's program at Teachers College, Columbia University.

Scott K. Johnson: She also recently received AADE's Diabetes Educator of the Year award for 2019, and she blogs at "It's all about balance" (the website is janekdickinson.com). And she's been living with diabetes since 1975. I can't wait to share her story with you, so let's dive right into it.

Scott K. Johnson: Alright, hi Jane. Good to see you again!

Jane K. Dickinson: Hi Scott! Thanks for having me.

Scott K. Johnson: A pleasure, a pleasure. So, for those who may not know much about you, or who you are, can you tell us a little bit about yourself and your connection to diabetes?

Jane K. Dickinson: Sure, absolutely. So, I am a nurse and certified diabetes educator, and I've been living with type 1 diabetes since 1975, and I got started ... when I became a nurse, it was actually, not a second career, but second degree. I started out as a biology major, and then I went into nursing, and I was ... my background is in pediatric clinical nurse specialist. And so, I did hematology and oncology first, and then I quickly switched to diabetes and felt very much [inaudible 00:03:53]. So I did worry a little bit about how it would be to live with diabetes and to be surrounded professionally by diabetes, and it has really worked out really well for me, for these last, what, 26 years, 27 years? So, yeah, I've enjoyed being a part of it that way. So, that's how I am connected with diabetes. And I always like to tell a funny story that I did start a blog back in 2011, which I realize was a late start compared to some, and I did that because I had written a book about diabetes, and I just wanted to get it out there and so I started this blog, and I started writing about just everyday experiences with diabetes. And then I was asked to be in a video interview at one of the American Association of Diabetes Educators conferences. And the woman said ... this was prior to the video ... she said, "I'm going to ask you about your experience with diabetes, if that's okay." And I was talking to my husband, and I said, "Well, I don't know if I want it out there. Like I don't know if I want to talk about that." And he said, "Well, you wrote a book. Right?" And I said, "Yeah." And he said, "And you have a blog. Right?" And I said, "Yeah." And he's like, "It's out there."

Scott K. Johnson: It's out there. That's funny.

Jane K. Dickinson: So it's kind of been out there ever since, and it is what it is. I insist on my middle initial K., because when I Googled myself one time, I found there was something like 24 Jane Dickinsons out there, and so if I stick my K in there, then I can find me. But, anyway, it's out there, that I have diabetes.

Scott K. Johnson: That's a funny thing you mention about your middle initial, because that's something that my mom and dad taught me as I was growing up as well, with a common name like Scott K. Johnson, that you use whatever you can to make yourself stand out amongst the crowd. And now there are other, of course, in the age of the internet, it's just amplified even that much more, so...

Jane K. Dickinson: Yeah.

Scott K. Johnson: I follow your lead in using my middle initial, also K. So, yeah, that's great. I think it's super interesting that you thought about and kind of wrestled with, living with diabetes and being surrounded by diabetes for your work and outside of work, and things like that too, and I'm glad to hear that it's worked out well. It's something that I think many of us working in diabetes, living with diabetes, sort of think about to, and I'm happy to report that for me it's also the same, where the work that I do at work, and the work that I do outside of work in diabetes, it also fills my cup as much as the energy that it takes to do that work. So, that makes me happy.

Jane K. Dickinson: Yep, I agree.

Scott K. Johnson: And, talking about your work. So today, you are the Program Director of Diabetes Education and Management Master's Program at Teachers College, Columbia University. Tell us a little bit more about that and how that came to be for you.

Jane K. Dickinson: Sure, yeah. So, Teachers College is the graduate school of education, health, and psychology at Columbia University, which is the big Columbia in New York City. And Teachers College is not known for diabetes education yet. However, we're working on it. But back in 2006, there was a student in the doctoral program in nursing education who went to my now boss and said, "You know, we need an academic preparation for diabetes educators." And she at the time was a nurse practitioner and diabetes educator, and I mean, it was a fabulous idea that I don't know why nobody had thought of that before that, because diabetes educators have historically been prepared in an apprenticeship model. So you have to work as a diabetes educator in order to become a diabetes educator, which doesn't make a lot of sense. So, there was no academic preparation or background, and so my boss took the ball and ran with it. She put together a task force, and they basically went to the state of New York and said, "How do we do this?" They interviewed, or they surveyed, excuse me, thousands of diabetes professionals through AADE, and they determined that people wanted this degree program, and they wanted it to be online. So, over the next four years, they put together this program, hired a consultant who developed the core, the basis of the curriculum that we have today. And they put it through the state of New York Department of Education, and in 2011 they hired me and we launched the program in September of '11. So it's a solely online Master of Science in Diabetes Education and Management, the only one of its kind in the world we know of. Actually, I really thought there would be more developed over the first several years that we were in existence, and we haven't seen that happen, unless we don't know about them. There are some programs in other countries. There are some certificates, graduate certificates, things like that, but we're not aware of any degree in the specialty.

Scott K. Johnson: You think that's because it's ... well, I mean, I suppose that there's a lot of thoughts around that. But maybe it's because that being the intention of making it online makes it so accessible that everyone comes there and it's got such a great reputation, and why not? Why reinvent the wheel?

Jane K. Dickinson: Yeah, yeah, perhaps. So anyway, we've just ... we're growing, slowly but surely, and getting the word out about our exciting program. We also have a certificate program, which is for people who don't want to spend the time or money getting another graduate degree, but want to take those core diabetes courses. So, yeah, so it works out. We have people from all over the country and the world, studying in our program, and it's inter-professional. So we have students representing right now 11 disciplines. As you can imagine, nurses and dietitians are the most, make up the most, but we also have physicians, optometrists, exercise physiologists, pharmacists, physical therapists, occupational therapists, podiatrists, clinical psychologists, dental hygienists, health educators. I mean, really, it's becoming more and more well rounded every day.

Scott K. Johnson: That's very, very exciting. And it fills me with a bit ... it fills me with a lot of hope and excitement actually for the future of diabetes education, to know that there's so much energy and work going into making those who help take care of me and people like me and us smarter and better at what they do. So, thank you for all of your hard work in that way, in that field.

Jane K. Dickinson: Well, and I think something that you just said is important, because the students in our program, the people who are interested in our program, and the people who are pursuing our program are so passionate about helping people with diabetes, and about being the best providers of diabetes care they can be, and being as informed and knowledgeable as possible, and that is what makes the program so effective and exciting and successful, is the people who are in it. It is exciting because we always talk about making the world a better place for people with diabetes right now, and that's what we're doing.

Scott K. Johnson: Fills me with ... I've got goosebumps now, so yeah. That's great, that's great. Now, you talked a little bit about how instrumental AADE was in helping get the program on its feet, and you received an exciting award from AADE this year. Can you tell us a little bit about that, and what that means for you?

Jane K. Dickinson: Sure, yeah. So, last August, at the annual meeting for AADE that was in Baltimore, I was named the 2019 Diabetes Educator of the Year, and thanks, thank you. And so what that means to me is basically that I now have an opportunity to promote my work, and my work is focused on the language of diabetes, the way we talk about diabetes, the way we talk to and about people living with diabetes. And this has been a passion of mine since the late 80s, believe or not. And that was when I was a staff member at diabetes camp. And we used to have our staff training week and one of the people who came to the camp from the Joslyn Center in Boston was Barbara Anderson, and she's a diabetes clinical psychologist. And she taught us basically how important the way we talk is, the words we use and the messages that we send. And that resonated with me so strongly that I carried it with me into my graduate work in nursing, and I did some in-services on language in 1993, and then it just started to snowball over the years, and it really stuck with me, like we need to do something about this. It wasn't changing, and even though people like Marty Funnell were writing about how we need to get rid of the word compliance and adherence, and we need to be more empowering in our approaches, it still wasn't changing. And so, it turns out that there was a position statement out of Diabetes Australia that was published in 2012 that came to my attention, and I thought, well we need to do this in this country, and so a group of us got together and started working on that in '16, '17, and we had a paper published in late 2017 on the use of language in diabetes care and education. And that was published by both AADE and the American Diabetes Association. So it was a first step for sure. AADE has taken that ball and run with it, and they've developed resources, and it's been wonderful, their support. We're seeing a trickle-down effect of individual clinicians who are out there making changes. I heard that the Cleveland Clinic has changed the wording in some of their documentation, no longer using the word refuse, and using decline instead. I mean, that's huge. I just signed an informed consent, or whatever, for my daughter's wisdom teeth yesterday.

Scott K. Johnson: Really, yeah?

Jane K. Dickinson: Something about refuse, blah, blah, blah, and [inaudible 00:14:58] option, like ... So, it really does make a difference in how it makes people feel. So, and it really goes back to my nursing background, because nursing is caring in the human health experience, and so to me, the language of diabetes is part of the human's health experience. And so I bring that with me obviously wherever I go, and diabetes educators are more than just nurses, we're inter-professional. And so I'm infusing that nursing emphasis into diabetes.

Scott K. Johnson: I love that. I have known you as someone who's been passionate about the language of diabetes for as long as I can remember knowing you, and I appreciate all the work and energy that you put into that, and your collaborative approach around that. I think you have come into it knowing that it takes working with many, and finding ways to scale that and reach as many throughout the different organizations, and it's really I think encouraging to see AADE and ADE coming together on this position paper, and publication and everything like that, so big kudos and big thanks to all that you've contributed to this. And if you were to ... I don't know, maybe you have thoughts on where this continues to go or dream big about the future. What does that look like for you?

Jane K. Dickinson: Well, my biggest dream is that we fix the language and the messaging in diabetes, and we take away the shame and the blame and the judgment, and we replace it with a strength-based approach, which means focusing on what people are doing at all, or doing well. And a person-centered approach, which is where we always put the person first. The person is what matters, not the numbers, not whether they're doing what we tell them or not, but how is the person. And then an empowering approach. So if we can flip the diabetes world to that, and that's what we're seeing, then it will be time to move on to healthcare in general. Because it's a problem everywhere. And so that would be my big picture dream.

Scott K. Johnson: Yeah, I love that. And anything that we can do, or I can do, and I can do to help compound it, no questions asked, we would be honored to help in that. Now, speaking of language and scaling and reaching and moving things forward, last time we talked, you were working on a podcast, and getting that going. Fill me in. What's the latest and greatest on that?

Jane K. Dickinson: So, you're familiar with my colleague Susan Guzman, who's a clinical psychologist, and she works with people that have diabetes. She has been very passionate about the language of diabetes as well, and it's neat to find people in different pockets around the country and the world who care about this, because they really do exist, and we're getting to know each other. And Susan and I were actually connected by Emily Coles, formerly from TuDiabetes. Probably, gosh, only, what? Three or four years ago. And Susan and I just hit it off right away because we had similar goals and passions. And so she is the second author on the language paper, and we have many, many phone conversations all the time, and we have these conversations about language, and our frustrations, and our excitement, and whatnot. And during one of those calls I said, "Susan, this needs to be a podcast." And quite honestly, I don't listen to podcasts. I have a husband who listens to podcasts. He will come home from work at the end of the day and sit in the driveway, and I'll be like, "Oh, he's listening to a podcast," 'cause he doesn't come into the house. He's finishing up a podcast. So, he's the one who turned me on to podcasts. He said, "Oh, I'm listening to this great podcast, you gotta listen to it," or whatever. And so I said to Susan, "This needs to be a podcast. We are having these amazing conversations. And we have these amazing ideas, we need to get them out there." And so I saw this ad through a blog that I follow about a podcasting class, and this was starting in late October, and it was a six-week class, and I thought, well, I gotta just do it. Right? I mean it was like the busiest time of the year, I did not have time to do this, but I was like, whatever, I'm just going to do it. And so I took this podcasting class, and I learned how to do a podcast, and I put together a podcast that I have named Unshaming Diabetes.

Scott K. Johnson: I love it.

Jane K. Dickinson: And the reason for that is that Susan had an influence in teaching me that you have to kinda just be in people's faces. You have to kinda say the thing that's hard to say. And the thing that's hard to say is that diabetes is surrounded by shame. And people don't talk about it a lot. There's shame all over the place in diabetes, and it's time to get rid of it. And so, that's the name of the podcast, and you're one of my first interviews, so that'll be airing live at some point. My hope was to publish and have it out there on January 1st of this year, and I will admit that I forgot a couple of steps, like I have to get the link on my website and things like that. So, I have it all ready to go, and it's... actually, if you Googled it on iTunes, it's there. I just haven't pushed it on my website yet. So, we're getting there.

Scott K. Johnson: Yeah, one step at a time, and I'm so honored that you have thought of me to include me in that as a guest on the podcast, so thank you very much for that. And it's another, I think, a great step in the work that you're doing, and I'm excited to watch it also blossom alongside all the rest of the work that you're doing, and I wish you all the fun in the world with it and all the cool guests that you're gonna have on the show, and how great. I'm such a big fan, also of Dr. Guzman, and I think it's just amazing. So, yeah.

Jane K. Dickinson: Well thanks. I appreciate your support. It's fun work in a weird, twisted kinda way. Talking about the shame in diabetes because there's so much hope surrounding it, and so much hope like you said earlier for getting rid of that shame, and lifting that veil, that heaviness of, oh, I can't tell anyone, or I can't... if people make me feel bad [inaudible 00:21:52] have diabetes? Sure, that may suck, but it is what it is, and we're going to move on, and we're gonna live life, and fit diabetes into it, and do the best we can.

Scott K. Johnson: Yeah, and I think, Jane, you have so much background, skill, education, real-world experience that you bring a very, very unique lens to how diabetes is talked about, both in the person with diabetes walk of life as well as clinical walk of life, and merging those two together is ... like you bring so much to the table around that. And just bringing that and talking about it, it does so much. One of the things that I like to think about in what has happened with the blogging space, and the social media space in general, not just in blogs, but, think about what would happen when someone used the internet to search for diabetes information 15 or 20 years ago. They would find all the clinical stuff, and the scary complications, but no stories of people living well with diabetes. And it's a whole different world out there now. So once we get these stories out there, and these conversations out there, people start to relate to them, they start to think in different ways, or at the very least start to explore the way that they're thinking about these things, and that brings, I think, a natural evolution, which is just nothing but good in my opinion.

Jane K. Dickinson: I agree, and I think that the main reason that I am interested in what I am, and I do what I do, is for those who don't feel they have a voice. For the people who may not even realize that things like the words that are used to them, or the things that they read on the internet. That they don't realize that they even make a difference.

Scott K. Johnson: Right.

Jane K. Dickinson: We know that they make a difference. We know that they have an impact on people. And the people themselves may not even be able to verbalize why or how, and it's for those people that I do this work. Because I know, I'm obnoxious enough that I'll say something if somebody uses the ick word, and I'll say, "Oh, we don't really say that anymore," or whatever. But it's the people who don't know the difference, and don't know the damage that it's doing. And I think it's that important, so ...

Scott K. Johnson: Yeah, I love it. I love it. Well, Jane thank you again for all that you're doing, and all that you will do moving forward. I can't wait to watch and support you however I can. We've covered a lot of ground today, is there anything that you want to dive deeper into, or anything that I've forgotten to ask about, or anything else that you want to talk about?

Jane K. Dickinson: I don't think so. I think that's a lot, and it's a lot to kind of sit with. Certainly, if people watching this are thinking language is not the most important thing, curing diabetes is the most important thing. And I agree! I absolutely agree that there are more important problems. I also believe strongly that language makes a difference, and that it affects how people feel about themselves, and therefore affects how they take care of themselves. And I am not the person who's gonna find a cure for diabetes. I own that. And so my work is based on what I can change or have enough I've found right now today. And so it may not be the most important problem, but it's a very important problem that we can address right now.

Scott K. Johnson: Well, trying to make a difference wherever we can, and I think the differences that you're making are big for many of us. I know they have been, and will continue to be for me.

Jane K. Dickinson: Well I appreciate everything, Scott. Thank you so much.

Scott K. Johnson: Yeah, you're very welcome, and we will put your contact information, your website, the link to the AADE resources on language and everything on the screen and in the notes of the show, so that people know how to learn more about all this stuff going on, and of course we'll have you on again at some point in the future to talk about all the cool things that have happened between now and then. So, Jane, thank you so much for coming on, and we'll catch up again soon.

Jane K. Dickinson: Alright, thank you. Happy New Year.

Scott K. Johnson: Thank you, happy New Year to you too. Alright, there you have it. I hope you also enjoy getting to know Jane. And I want to give a special thanks to Eileen, and Ronald, and Kelly, Shawn, everyone watching. Thank you so much for the new topic ideas and suggestions for things that you would find helpful for us to talk about. We will certainly do some homework, track down some information, and connect you with some experts in those areas to help you along. Alright? And as a special thanks to everyone watching, I've got one of these fun, awesome mySugr tote bags with some goodies inside, like a pop socket, a few stickers, and things like that, that I want to give away. To enter in the giveaway, leave a comment below, and let Jane and I know if you enjoyed today's episode. And then before next week's show, I'll randomly pick a lucky winner and announce them during the start of the broadcast. Alright, once again, today's episode is sponsored by the mySugr Bundle. Get unlimited strips, automatic supply refills, personalized support, and more all for just $49 every month. Learn more at mySugr.com/facebooklive. And then, be sure to tune in next week, where we connect with T'ara Smith. T'ara is the project manager for Beyond Type 2, a new program of the global nonprofit Beyond Type 1, and it's designed to help people in the type 2 diabetes community find resources on management, share their stories, and connect with others. T'ara also lives with type 2 diabetes and loves to show others how they can live a full and healthy life with it. And I just can't wait, it's going to be so much fun connecting with her. Alright, thank you so much for joining today. Please like this video, share it with your friends, and have another amazing day. And we'll see you next week.