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A lot has already been written about the photo ban at ADA last week. For the first couple of days of the meeting, the first topic of conversation I had with everyone I met was not about what I’d seen or learnt. It was about the photo ban and the ADA’s failure to appropriate deal with the complaints. It was a debacle, an absolute shit storm that could have been addressed in many ways to make it better.

Firstly, it’s worth noting this is not new. Two years ago, I was swiftly reprimanded for tweeting a photo during one of Bill Polonsky’s talks. The ADA bot who was monitoring any flouting of the no photo rules quickly responded to anyone sharing photos on twitter or other social media platforms. The message was strong: stop doing this or your credentials will be revoked. For the record, this was the photo that got me in trouble:

Yes – that photo of Dr House straight from the Internet was the reason that removal of my press credentials was threatened.

This year, execution of the archaic policy was increased to expert level. And people were not happy.

Many were asking why the ADA was being so strident in their enforcement of the policy or, more importantly, why the policy was there in the first place. But it’s not just the ADA. Taking photos or videos during sessions or of posters is banned at the IDF’s WDC, EASD meeting and here in Australia at the ADS-ADEA meeting. (How’s that for a sentence of alphabet soup?)

However, I have never known it to be enforced the way it was last week with a multifaceted approach of vigilant soldiers in red approaching anyone daring to photograph a slide during talks or in the Poster Hall, as well as social media (mostly Twitter) responses being fired left right and centre to anyone who then tweeted a photo.

The ridiculous thing is that anyone at the conference could tweet WORD FOR WORD what the speaker was saying (provided they are a speed Tweeter), but just couldn’t take a photo of the slides. And to be honest, a lot of the speakers were pretty much reciting WORD FOR WORD what was on the slide, so it was possible to pretty much tweet out every single thing being presented. (Also, that makes for a really boring presentation. Don’t do that!)

Suddenly, the story of #2017ADA was not new diabetes research or technology or treatment. In fact, the story wasn’t diabetes at all; it was how pissed off people were at the ridiculous ban.

People trying to follow along from home felt excluded and annoyed. Attendees of the conference felt frustrated that we couldn’t share what we were seeing with those not in the room. As is often the case at these meetings, there were two or three or more concurrent sessions I wanted to attend, but as I’m yet to learn how to be in more than one place at the one time, rely on people in the sessions I’m not at to share what they are seeing and hearing.

And me? I was irritated and exasperated at how difficult it was to follow the #2017ADA Twitter feed because of all the bloody criticism of the photo ban. (And just delicately, those people who commented on EVERY SINGLE TWEET about the ban, you were not helping. You were making it harder.)

I understand that I am very fortunate to attend diabetes conferences both here and overseas and I am conscious that not many people with diabetes are sitting in the audience. I also know – from personal experience as well as anecdotally – the people in the audience are not always the best sharers. When they return from conferences, they don’t sit with people with diabetes to share what they have learnt.

So, as a person with diabetes who likes to share and communicate, I think it’s my responsibility to share as much as I possibly can about what those of us with a registration or press badge are seeing and hearing.

Trying to stop the flow of communication in digital times is ridiculous and it demonstrates an appalling lack of understanding about harnessing digital platforms’ reach to educate, inform and support not only people with diabetes, but also healthcare professionals. It was also ludicrously naïve of the organisation to think that there would not be backlash and that they would get off without condemnation.

The control of information is really not possible in this day and age. A conference about diabetes should not be shut off from people with diabetes, and if the only way ‘in’ for most people is online, then that avenue should be thrown open as broadly as possible.

In two months’ time, the ADS ADEA conference will be in Perth, bringing together diabetes healthcare professionals from across Australia. It is our largest meeting. Currently, on the meeting website, there is this warning in their social media guidelines:

I am calling on the organisers of the ADS-ADEA conference to change this policy immediately, instead, encouraging the sharing of information far and wide. Consider those who cannot afford the time or fee to be at the conference, yet would benefit significantly from learning what is going on. Embrace social media as a way to extend reach from the few thousand attendees (or few hundred in any one session) to a far larger audience. And welcome all diabetes stakeholders to be part of the discussion online.

Just think how much better #2017ADA could have been if that had been the story.

Some excellent commentary on the photo ban at ADA.

Medscape’s piece written while the meeting was happening. 

The always thoughtful Marie Ennis O’Connor’s piece for Medium

And this from Medpage Today

 

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Yesterday, I wrote a quick review of the language session at #2017ADA and my excitement as I anticipated the session.

I don’t want to sound Grinch-like, but I walked out of the session feeling less enthused than I had when I walked in. That’s not because the speakers weren’t good. They hit the mark and said all the right things.

And it’s not because I am not excited to see the ADA and AADE developing and getting ready to launch their Language Consensus Statement (it’s due out in August). I am; I am so excited!

It’s because I didn’t hear anything new, and the time has come for us to do something more with language matters. Because, #LanguageMatters.

It was six years ago that Diabetes Australia launched ‘A New Language for Diabetes’ position statement. In collaboration with the Australian Centre for Behavioural Research in Diabetes, Diabetes Australia wanted a concise, easily shareable document that could straightforwardly and succinctly explain how to communicate with and about people with diabetes. Unapologetically, it called out the words that harmed and offered replacements that were more inclusive, less judgemental, all in an attempt to use language that didn’t make us feel like we were constantly failing at life with diabetes.

Six years is a long time in diabetes. Disappointingly, there’s still a lot that’s not great about the way diabetes is discussed in the media, in healthcare settings and, unfortunately, by healthcare professionals. We haven’t reached a position of respect; we have not managed to leave all judgement at the door when speaking about diabetes; we have not even started to eliminate stigma.

When the Language Position Statement was initially launched in Australia, I saw it very much as as first and most welcome step. Was it perfect? No. It was a starting point, not the end of it all.

It was never considered as definitive document, but it certainly a great place to begin; a living resource that could evolve. As the ACBRD did more and more work in the stigma space, it became very clear that words do indeed matter, and Diabetes Australia took the evidence and continued to push the envelope and innovate in this previously unexplored space.

Perhaps that’s not actually a correct statement. Language and words had long been on the radar of people living with diabetes. Diabetes camps had stopped using words such as ‘good’ and ‘bad’ to describe glucose numbers; the debate on the word ‘diabetic’ had been going for years, and many rallied against the words used that blamed, judged and slurred people with diabetes – whether it be for developing diabetes in the first place, or how well we are managing it.

But the Language Position Statement was the first time that it was all there in one neat document, backed by evidence to support the thoughts of PWD. (Jane Speight and I gave a number of talks which started with me ranting and waving my hands around about how language and words affects those of us living with diabetes, and concluded with Jane stepping up to present the evidence. Those talks packed a punch and made it very difficult for people to ignore the issue or to keep referring to it as political correctness gone mad.)

But now, six years on, I want more. I don’t want it to just be a debate about whether or not we use the word ‘diabetic’ (although this is still an important issue). We get waylaid when that is our whole focus, and I feel that anywhere that is just now coming to the language party needs to be a step ahead of the development of a language position statement. That’s been done and has been in circulation for over half a decade. Use it, adapt it, rebrand it and make it your own, but I’m not sure there is a need to recreate the wheel and start from scratch?

Not when there is still a lot more to do.

What’s the next frontier in language and diabetes? Maybe it’s diabetes conferences.

Because, they are a mess, with many presentations still peppered with words such as ‘non-compliant, non-adherent, poor control’, or referring to participants in research as ‘subjects’, and often (and sadly) a not a great understanding of the difficulties of living with diabetes.

With a Language Positions Statement already in existence, a great (and simple!) start to remedy these shortcomings could be for conference organisers to send a copy of it to all speakers, explaining there is an expectation that slide decks and talks will be in line with the document and its recommendations. And while they’re at it, the same expectations should be in place for anyone showing in the exhibition hall at the conference, or writing about the event. Along with embargo regulations, press corps could also be sent the position statement.

We know that organisations have the capacity to be vigilant – perhaps had the ADA put effort into urging appropriate use of language at the conference instead of enforcing their archaic photo ban, they wouldn’t have been hit so hard on the socials.

It’s time for us all to expect more and to demand better. How are YOU going to do that?

It’s day three of the eighth annual #DBlogWeek, created by Karen from Bittersweet Diabetes. This is the sixth year I’ve taken part and it’s a great opportunity to not only write about some truly interesting topics, but also a chance to read some blogs you may not otherwise. Here are the links to today’s posts.

 

Today’s prompt: Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!  

I’ve written before about difficult encounters with HCPs. There was this time and this time. And this time where it wasn’t even me who the HCPs were speaking poorly about! 

So, instead of doing that today, I’m going to talk (as in actually speak) about the the overall issue of blame and diabetes, and what can be said to address the blame game. (Apologies for the speed talking and hand waving.)

There are lots of ways to discuss diabetes. Some people literally talk about it – in front of roomfuls of people or in the media or record little vlogs of things that they find particularly interesting. Others write about it for different media platforms. Some, you may have heard, even blog about it…!

And then others create comics about it.

Last December, I was sent a copy of Claire Murray’s first ‘Living with It’ comic and just last week, I was sent the second. I don’t actually know Claire (other than online), but I know her dad. And like all good dads, he is (quite rightly) very proud of his kid and wants to show off her brilliant work. So he kindly popped the comics in the mail for me.

There is much to love about Claire’s comics. They are very funny –  as in laugh out loud funny. I’m writing this in a local café and keep giggling as I flick through their pages. ‘Living with It’ chronicles the story of a kick-ass young woman with diabetes called Megan who just happens to have type 1 diabetes. Oh, and she’s a bona fide superhero.

A new diabetes superhero! Back cover of ‘Living with It’ #1 by Claire Murray.

Megan as a character is brilliant – the perfect mixture of snark and sass! She fights crime while managing to deal with diabetes in a most fabulous manner. I want to be friends with her so she can teach me her ways! (Plus she looks like a human, not a barbie doll, which is a nice departure from how women are usually drawn in comics.)

And you absolutely don’t need to have diabetes to get the story, which is why this is such an awesome channel for discussing diabetes. Claire hasn’t created a ‘diabetes 101’ story in a comic – this isn’t really about learning the ins and outs of diabetes. (Although the glossary at the beginning of the second comic is excellent in its straightforwardness and a perfect way to describe some of the basics of diabetes. Simple pictures, clear explanations.)

Glossary from the beginning of ‘Living with It’ #2, by Claire Murray

What Claire has done is shape a very clever and funny superhero story, and wound diabetes through it. Diabetes isn’t really the central theme – it’s just there and in the way. Kind of like diabetes in real life! She has managed to unmistakably show the disruption and irritation diabetes creates each and every day.

I love the idea of kids and teens with diabetes (and grown-ups with diabetes) reading these and sharing them with their friends. The gentle, funny and captivating tales are a terrific way to explain just how and where diabetes can get in the way of real life, yet, despite the mess of out messed up beta cells, those of us living with it just get on with things.

You can read more about Claire Murray and her work at her website, Tumblr and Instagram.

(For the record, I think Claire might be a bit of a superhero, too. I believe that she is on a panel this weekend at Supanova where she will be speaking about the Women in Comics Festival.)

I’m still getting my head around the #HealtheVoicesAU conference – there was so much that happened over the event that it’s taking time to write about it all and really nut out what I took away from each session. (Previous posts here and here.)

When I looked at the program, I was probably most excited to hear from Nick Bowditch. I knew nothing about Nick other than what the program told us: He is the only person in Asia Pacific to have worked at Facebook and Twitter; he’s an entrepreneur who helps small businesses here and across the globe shape their online presence. And his personal health story is that Nick is a mental health advocate as someone who has lived with depression for many years.

I knew Nick’s talk would have lots to offer, and title of his talk that had me excited: ‘The Art of Storytelling’.

I’ve written before about why I love story tellers and story-telling. And telling my own story. It’s reading and hearing the stories of others with diabetes that helps put in context my own experiences. Others’ perspectives shape my own and I learn so much from how others deal with the clusterfuck that diabetes can be.

The first slide Nick showed us was of the wonderful Jamaa el-Fna in Marrakech. He told us how he spent an evening captivated in the square. There amongst the snake charmers and the men walking around with monkeys on leads and the little girls selling tissues and the vendors hawking fresh orange juice, were story tellers. And although he couldn’t understand a word they were saying, he was enthralled as they animatedly told their stories.

That’s the beauty and magic of a good story teller – you don’t necessarily need to understand the detail; just getting the gist of the tale is enough.

And then, Nick gave us the snapshot of his story. In a nutshell, he told us this:

Slide from @NickBowditch

It’s easy to make assumptions and think that you know what Nick might be living with if you see that list. But you’d probably be wrong. I know I certainly was. My initial ideas of what life must be like for Nick were turned on their heads as he put into context what each of the above aspects of his life actually means to him:

Slide from @NickBowditch

By turning our assumptions on their head and reframing how he lives with mental health conditions shows us that Nick is not ‘just coping’, he’s living. His words were: ‘These are not my defects. These are my superpowers.’ And it challenges us to reconsider our preconceived ideas. I know that those of us who speak about diabetes often challenge what others think.

The image of T1D being all about kids and needles and blood is not really what it’s about for me. And the far-too-easy idea that T2D is all about older, overweight, inactive people is wrong too.

When we tell our stories – and reframe the narrative – the truth comes out.

Possibly the most powerful thing Nick said was this: ‘Telling the truth is not brave. It’s easy. The hard thing is not being authentic.’ We’d come full circle back to the first speaker of the day who implored us to find authenticity in what we were saying. And it reminded me of why I have always been an advocate of having people with diabetes sharing their stories in any forum where people are talking diabetes: the legitimacy of lived experience cannot be found in any other way than actually having someone tell their story.

I see first-hand the power that having a person with a health condition stand alongside a healthcare professional and put into context the theory and research that they have just presented.

There is an art to storytelling. We do it every day that we tell our story. We do it every time we put words on a page for a blog post, or in a diary or in a letter, ot when we stand up and tell it like it is. Some do it far more elegantly and eloquently, but the things is; it doesn’t matter. As long as we’re authentic.

DISCLOSURE

Thanks to Janssen (the pharma arm of Johnson and Johnson) for covering my travel and accommodation costs to attend the #HealtheVoicesAU conference. There was no expectation by Janssen that I would write about the event and everything expressed here (and on Twitter Facebook and other social feeds) is mine and mine-alone! To read more, check out the conference hashtag, #HealtheVoicesAU, on the socials. 

Back in 2012 when we were thinking of starting the #OzDOC weekly Twitter chat, Kim, Simon and I were committed to making sure that it was a safe place, welcoming to all who wanted to use it. We encouraged people to actively participate, lurk in the background, jump in and out as they needed.

I had always been so impressed with the non-toxic and inviting place the #DSMA chat was, welcoming people with all types of diabetes as well as a few health care professionals, and I hoped that we could replicate this environment, albeit on a smaller scale, with #OzDOC.

Pleasingly, that’s the way it started and now, it continues to be that way. While I’m no longer involved in the running of OzDOC, or moderating its weekly chats, whenever I do drop by to participate, it is clear that the safe and inclusive model that formed its foundation continues.

It has been great to see that the encouragement of healthcare professionals to join in – lurk at first to get the idea and then respectfully participate – has continued, and frequently, a DNE or dietitian or endo will pop in and contribute.

But last night, during the chat, there was an intrusion that was not respectful. In fact, I likened it to someone bursting, uninvited, into my house and yelling that they didn’t like the way we’d decorated it and then offering to fix it as long as I paid them. I bristled immediately. And felt protective of the people in the #OzDOC room who had been so candidly and honestly sharing their thoughts.

This was a particularly delicate chat. Ashley had more than expertly navigated the sometimes tricky waters of a discussion about the place diabetes fits in our lives, and ended the chat with a question about burn out. It is a testament to the space that is #OzDOC to just how candid and honest people were in their responses.

So, the idea that someone tweeted something about how so many participants were clearly living with ‘out of control’ diabetes and then linked to her fee-for-service website, was not only inappropriate, but also insensitive, thoughtless and showed a true lack of understanding of what people with diabetes are dealing with.

My mother hen instinct kicked in. I had just laid myself bare as I used words that describe burn out to me, and others had as well. This was absolutely not the moment to promote a business and, at the same time, tell people they were doing a crappy job at managing their diabetes. And there is no place for judgement in this chat, especially from someone so clearly out-of-touch.

While my response was somewhat reflexive and probably could have done with a moment away from the keyboard before hitting the ‘tweet’ button, I don’t regret that I did it. And the responses from others in the chat suggested they too were feeling uncomfortable about the intrusion to the discussion.

I was furious that someone had so aggressively and judgementally invaded the safe space that has been so carefully cultivated. ‘Out of control’ diabetes? Really? Fuck off. (Actually, that was the response I wanted to type, but kept myself nice, so maybe I wasn’t as harsh as I thought.)

My concern about this intrusion was twofold. Primarily, I would hate for any person with diabetes to feel afraid of participating in any sort of peer-based activity for fear of being judged. We get enough of that outside of the spaces we create for ourselves and certainly shouldn’t have it forced upon us in our own groups.

But also, I would hate for any HCPs to think that they are not welcome to participate. They most certainly are, however the respect, lack of judgement and kindness expected by participants is expected of everyone. If they are unable to demonstrate that, stay away.

I’m not naming and shaming the person who tweeted last night. The tweet has been removed anyway. But, I would absolutely encourage them to come back next week and the week after and the week after that to learn. Watch what goes on in these chats, listen to what people are saying, understand the real-life sensitivities of diabetes.

And then, feel free to softly, softly join in. Respectfully ask questions (after asking if it is okay to ask questions) if there is something that needs clarifying. Gently share ideas that may be of benefit. But absolutely do not try to sell something. And check your judgement at the door.

no-judgement

Last week, my Timehop app reminded me of this snapshot in time.

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This photo was taken at the 2013 International Diabetes Federation’s World Diabetes Congress in Melbourne, and that look on my face is of pure anger. I was listening to a speaker – a doctor – referring to ‘non-compliant diabetics’ as he was telling of the ‘poor outcomes’ of ‘patients’ in his practise.

The old language chestnut came up again on the second day of the #MayoInOZ conference during the innovation showcase was held. In this session, nine speakers were each given five minutes to present how they are using social and digital tools to improve healthcare. (This is where Kim spoke about #OzDOC and how healthcare professionals use the hourly tweetchat as an opportunity to engage and learn from people with diabetes.)

The final speaker in the innovation sessions was a late addition and it was great to see diabetes again being represented. I know I am biased, but I do always get excited when I see diabetes on the program!

Andy Benson from Coffs Endocrine and Diabetes Centre presented on the project she has been working on: telling the story of diabetes in a series of documentaries to be screened on the BBC.

So, first things first. I love this idea. I am a huge fan of having diabetes out in the ‘public’ space, pulling it out from diabetes groups and diabetes-specific forums, because in most of these cases, we’re preaching to the converted. It’s one of the reasons I love writing for Mamamia Women’s Network where I know that most of the readers probably don’t already have a connection to diabetes.

If these documentaries are screened on the BBC, imagine the audience! It is so refreshing to see people thinking outside the box and looking for ways to present to a new audience – and to tell stories, real stories of real people who actually live each day with diabetes.

Andy showed two short video clips from the still-in-development documentaries. As healthcare professionals on screen spoke about diabetes, I automatically prickled, my language and stigma sensors being alerted straight away.

I wasn’t the only one. In a room with two other diabetes advocates – Kim, Melinda Seed (Once Diabetes), as well as several very vocal health advocates and activists, there was a sense of discomfort at what we were seeing.

I inhaled – maybe ‘gasped’ is a better word – when one of the HCPs used the words ‘diabetes plague’ in his introductory words. There was an undeniable sense of blaming the person with diabetes in the words being used and the sentiments being expressed.

The Twitter conversation from both people in the room and those following along was honest and candid. And, quite frankly, it was uncomfortable too. Andy had disclosed that she has type 1 diabetes, and I didn’t want to be actively criticising the work of a fellow PWD.

However, I could not keep quiet either. When Andy came over to chat after her talk, we had a very open discussion. I was probably quite blunt in my comments.

It is not okay to use language that is stigmatising. The format of the information being presented (i.e. unscripted interviews) doesn’t preclude anyone from being courteous and respectful, and I don’t believe that PWD were being treated either courteously or respectfully in the way about which we were being spoken.

I understand that there is a desire for authenticity and genuineness when interviewing documentary ‘talent’, however it is possible to be clear from the outset that language needs to be respectful at all times. Not sure where to begin with this? How about the Diabetes Australia Language Position Statement which actually provides suggestions for inclusive, non-stigmatising language?

I think it is really important to acknowledge that the road to satisfaction in the way we use language that is inclusive and non-stigmatising is a very, very long one. Also, I genuinely don’t believe that there was any malice intended on the part of the film makers or the interviewees.

We also need to acknowledge that the language used in what has been (and many would argue continues to be) a patriarchal health system is entrenched in the thinking of many – it was part of their training and is a habit that will take time to break. But by acknowledging it, we are not saying it is okay.

As I said, I love the idea that diabetes is a topic for a documentary that is being made for a non-diabetes-specific audience. However, if those people walk away thinking that my healthcare condition is a burden to society (and therefore I am too!) or that they believe it is okay to continue to use words that stigmatise, then there is the potential for this work to do more harm than good.

And finally, a call to not only the coordinators and owners of this work, but to all who are developing any sort of health information using any sort of platform: talk to people with the condition. Lots of them. It is not okay to have one token consumer representative; there should be many – as many as (if not more than) any other expert being consulted.

One of the discussions at #MayoInOz turned to the divide between personal and public social media use – especially relating to our loved ones. ABC National Medical reporter, Sophie Scott, explained the rules she’s put in place to define her professional and personal life, trying to keep the two distinct to protect her children.

It’s something I frequently think about. I use social media a lot. But despite possibly appearing to be a (social) media whore, I have rules about how I use it when it comes to my family – especially our child. The first photo I posted of her was when she was three years old. She is standing in the front garden of our old house, under the weeping silver birth tree, dressed in one of the fairy dresses that was on frequent rotation at the time. She has a cheeky smile on her face and looks quite delicious. I’ve since posted baby photos of her – usually around her birthday and on the pregnancy diary I recently published.

These days, she gets to veto whether or not I post a photo of her. If she is happy for me to share, I do. If not, I don’t. She often asks who will be able to see the photo before deciding if it is okay for me to share it.

But when she was wee, I had a very easy rule for sharing photos of her. If I wouldn’t share a photo of me doing something, I wouldn’t share a photo of her doing the same thing. So, no photos of her in the bath, naked on the floor on a towel, throwing a tantrum, crying, when she was sick, doing something embarrassing or looking grumpy. I don’t want photos of me in any of those situations online, so how could I justify it as okay for me to post photos of her like that – even if she is a kid?

This isn’t necessarily about me being worried that someone is going to do something nefarious with the photos. It’s about how she’d feel knowing others have seen her like that.

The same goes for sharing stories about her. I would never tell a story that would embarrass her – now or later in life.

The discussion at the conference turned to how parents of children with health conditions and disabilities share photos and stories of their child, perhaps not thinking about the repercussions for their child. I have commented on this in the diabetes world, and been told in no uncertain terms that I don’t get a say in this discussion as my child does not live with diabetes.

I understand that my perspective on diabetes – diagnosed as an adult – is very different to that of a child’s or the child’s family. But I am an adult with diabetes. And when I see a photo of a kid in hospital with tubes coming out of them because they are in DKA, all I can think about is how that child is feeling at that exact moment.

I’ve had a couple of DKA hospital admissions thanks to gastro bugs. I am not being melodramatic when I say that I felt that I was about to die. Between the throwing up, unstoppable nausea, desperate need to quench my thirst, weakness, rapid heart rate and feeling terrified, all I wanted to do was curl up and feel better. Or die. I would be horrified if someone shared photos of me at such a vulnerable time. I don’t want anyone to see me like that – ever.

The same goes for when I am having a weepy hypo, unable to stop the tears or the unintelligible stream of consciousness babbly coming from my mouth…or a giggly hypo where I am borderline hysterical. I don’t want that recorded for all to see. (I once filmed myself having a scary low and when I watched it back a couple of days later, it was truly shocking. I deleted the video, terrified that it would somehow find its way onto YouTube or Facebook – probably posted by me when I was next low!)

When I’ve asked parents of children with diabetes about this, they say that they do it as an awareness-raising opportunity. By showing their kid during the more serious diabetes times, they feel they can give an accurate picture of life with diabetes. It shows the pain and the fear and the relentlessness of it. I understand that – trying to tell the story of diabetes in a way that resonates with those not actually living with it is important. It’s one of the reasons I share my story.

But how do we do that without it seeming almost exploitative – especially if the story or photos we are sharing is actually not directly ours?

I was glad for the discussion at #MayoInOz, because I’ve started several posts about this issue, but have always felt clumsy and as though I am overstepping. I still hear the words ‘You don’t get a say’ and delete whatever I have written for fear I will be chastised and told to step away.

But after the conference, I decided I did want to write about it and, perhaps, start a discussion that points specifically to the diabetes world. Where is the line drawn between showing the world what diabetes is about and exploiting or exposing our loved ones? And who gets to decide? Is consent an issue here? Or is the child’s story inextricably tied up with their parents and therefore there is no line?

Thankfully, someone has written about this in a far more eloquent and elegant way! One of the other scholarship winners at the conference was Carly Findlay. Carly is a well-known blogger, writer, speaker and appearance activist, and this piece she wrote last year is definitely worth reading. (She’s also a genuinely nice person who didn’t even flinch when I once accosted her in Lygon St, almost yelling at how beautiful she looked at her recent wedding because she absolutely did and I just needed to tell her, in a ridiculously excited and animated manner. She was most gracious to this bumbling mess!)

Postscript

I don’t think I have really done this issue justice. I do know that some of my favourite bloggers are parents of kids with diabetes and I think that is possibly because I have never felt uncomfortable about what they have written. While Annie Astle is a very, very, very good friend of mine and my family’s, she is also a brilliant writer and when she shares her family’s story, it is never at the expense of Pumplette’s dignity. (Annie’s own dignity is often given a bashing because she is so bloody self-deprecating!) I recommend her blog to every parent with a newly diagnosed child because her posts are beautiful, honest and never manipulative.

Today, I gave a talk to healthcare professionals at a hospital in outer Melbourne. I was invited months ago after the organisers heard me speak at another event, and they wanted me to speak about living with diabetes.

As I said in the introduction to my talk, I am dead boring. Plus, I am only one voice. So, to create some balance and some interest, I reached out through Facebook and asked this:

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As usual, the online community didn’t disappoint. I had over forty responses and weaved them into my presentation, adding real impact to what I was saying, reinforcing my comments with the comments of others walking a similar path of life with diabetes.

I started by asking the audience a question…

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And then I said that I would be talking about life with diabetes. Except, I reminded the audience that life with diabetes was very different depending on where in the world you were diagnosed and that my story is about my ‘first world diabetes’ and I checked my privilege almost as a disclaimer.

I used that point in my talk as an opportunity to speak about those who cannot access or afford insulin and how this is simply, not okay. I could sense the surprise in the room as I said that people are dying because of lack of access.

 

Then I spoke about what diabetes is to me and here is what I said:

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It’s boring and tedious and frustrating.

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It’s made me an expert. And that we need our HCPs to acknowledge the hours and hours and effort we put into managing our own brand of diabetes and the expertise we develop from living so closely with this condition.

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It’s about humour – because laughing is a tool I use to get through this and that’s okay.

jrwiv9f2It’s about words, because language matters and sticks with us forever.

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It’s about stigma. I asked if they could think of another condition that was so stigmatised and surrounded by blame – and that while we experience it with type 1 diabetes, I said that I believed my brothers and sisters with type 2 diabetes have it so much worse.

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It’s invisible – despite the bright blue patch surrounding my Dexcom, most of the time it is hidden away and not on show for all to see.

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It’s about people and community and the DOC and the people that are like the air I breathe – without whom I would not be managing at all.

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It’s about my family. And then I explained, fighting back tears, that this is the hardest part of life with diabetes for me. I’ve written about it a lot, spoken about it often. But thinking about how diabetes impacts on Aaron and the kidlet breaks – absolutely shatters – my heart into pieces. The worry I cause my parents makes me feel guilty and resentful. And every day I regret the time I told my sister that my life expectancy had been cut thanks to my type 1 diagnosis because I will never forget the look in her eyes indicating the pain I had just caused her.

I answered a couple of questions and then my talk was done. I thanked the audience for listening, stepped down from the stage, took a deep breath. Someone came up to me as I was gathering my bags and said that she learnt more about real life with diabetes in that talk than in all her years nursing.

This is the power of story telling. The comments I read out and shared have so much power in them. We need to keep telling our stories, turning the way we talk about diabetes on its head. It’s not about the numbers, the tools or anything else. It is about people.

Thank you so much to everyone who shared their comments with me on my Facebook post yesterday and today. 

It’s Drop the Jargon Day. Here’s one I prepared earlier about this very topic.

So today, I am taking extra care about the words I use and the things I say and write when talking diabetes.

I know I am guilty of being very lingo-istic at times. I read through this blog and see the jargon sprinkled through posts, abbreviations and slang terms littered everywhere. (Huge thanks to someone who commented on one of my posts last week about how I need to not use anagrams so much!)

I catch myself in meetings using shorthand that makes sense to me, and correct myself by explaining terms may be like a second language to those of us required to speak it fluently, but a foreign language to those who don’t.

So today, I am going to use pictures to illustrate this issue. Because a picture tells a thousand words. And a cartoonist is far more amusing that I could ever hope to be! (Click on images for source.)

Take the pledge to Drop the Jargon here. 

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