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How are two separate Twitter incidents in the DOC related when one was started after someone without diabetes made some pretty horrid comments about diabetes and the other was a conversation diminishing the whole language matters movement to something far less significant and important than what it is truly about.
Let’s examine the two.
EXHIBIT A
Sometime over the weekend, someone I’d never heard of came out with some pretty stigmatising commentary about diabetes. This person doesn’t have diabetes. But hey – joking about diabetes is perfectly okay because, why not? Everyone else does it. Jump on the bandwagon!
She deleted her original tweet after several folks with diabetes pointed out just how and why she was wrong. And also, how stigmatising she was being.
In lands where all is good and happy, that would have been the end of it. We would have moved on, lived happily for a bit, until the next person decided to use diabetes as a punchline.
But no. She decided to double down and keep going. It was all bizarre and so out of touch with what the reality of diabetes is, but perhaps the most bizarre and startling of all was her declaration that there is no stigma associated with diabetes. Well, knock me down with a feather because I’m pretty sure that not only is diabetes stigma very real, but I’ve been working on different projects addressing this stigma for well over a decade now.
EXHIBIT B
At the same time this mess was happening, there was a discussion by others in the DOC about being called a person with diabetes versus being called (a) diabetic. I’m pretty sure it was a new conversation, but it may have been the same one that played out last month. And the month before that, and a dozen times last year. Honestly, to me, this conversation is the very definition of bashing my head against a brick wall. If you’ve played in the DOC Twitter playground you would have seen it. It goes something like this:
‘I want to be called diabetic.’
‘I don’t care what others say, I like person with diabetes.’
‘Why should I be told what to call myself?’
‘I am more than my diabetes which is why I like PWD.’
‘My diabetes does define me in some ways, which is why I like diabetic.’
(And a million variations on this. Rinse. Repeat.)
I have no idea why it keeps happening, because I’m pretty sure that at no time has anyone said that people with diabetes should align their language with guidance or position statements to do with language. I’m also pretty sure that at no point in those statements does it say that people with diabetes/diabetics (whatever floats your boat) must refer to themselves in a certain way. And it’s always been pretty clear that those adjacent to (but not living with) diabetes should be guided by what those with lived experience want.
AND it’s also been pointed out countless times that it’s not about single words. It’s about changing attitudes and behaviours and addressing the misconceptions about diabetes. And yet, for some, it keeps coming back to this binary discussion that fails to advance any thinking, or change anything at all.
Is there a great discussion to be had about person-first versus identity-first language? Absolutely. And looking at long-term discussions in the community there are some truly fascinating insights about how language has changed and how people have changed with it. But does it serve anyone to continue with the untrue rhetoric that people interested in language are forcing people with diabetes / diabetics (your choice!) to think one way? Nope. Not at all. It’s untrue, and completely disingenuous.
These two seemingly separate situations are connected. And that is completely apparent to people who are able to step back and step above the PWD / diabetic thing. People who know nothing about diabetes keep punching down because they think diabetes is fair game. And people with diabetes are the ones who are left to deal with these stigmatising and nasty attitudes.
I woke this morning to this tweet from Partha Kar.
I was grateful for the tag here because the frustration Partha has expressed mirrors the frustration I am feeling on the other side of the world.
I don’t know why this keeps coming up, I really don’t. I honestly do think that most people understand that we talk language in relation to stigma and to discrimination and to access. That was how it was addressed at the WHO diabetes focus groups earlier this year. That is how it was addressed at the #dedoc° symposium at ATTD. It is how the discussion flowed in last year’s Global Diabetes Language Matters Summit. Most understand that these issues are far more pressing.
If people want to keep banging a drum about the diabetes versus diabetic thing, that’s fine. But I reckon that many of us have moved well beyond that now as we seek to address ways to change the way people think and behave about diabetes so that we stop being the butt of jokes or collateral of people punching down on Twitter.
Throughout ATTD I got to repeatedly tell an origin story that led us to this year’s #dedoc° symposium. I’ve told the story here before, but I’m going to again for anyone new, or anyone who is after a refresher.
It’s 2015 and EASD in Stockholm. A group of people with diabetes are crowded together in the overheated backroom of a cafe in the centre of the city. Organising and leading this catch up is Bastian Hauck who, just a few years earlier, brought people from the german-based diabetes community together online (in tweet chats) and for in person events. His idea here was that anyone with diabetes, or connected to the conference, from anywhere in the world, could pop in and share what they were up to that was benefitting their corner of the diabetes world. I’ll add that this was a slightly turbulent time in some parts of the DOC in Europe. Local online communities were feeling the effects of some bitter rifts. #docday° wasn’t about that, and it wasn’t about where you were from either. It was about providing a platform for people with diabetes to network and share and give and get support.
And that’s exactly what happened. Honestly, I can’t remember all that much of what was spoken about. I do remember diabetes advocate from Sweden, Josephine, unabashedly stripping down to her underwear to show off the latest AnnaPS designs – a range of clothing created especially to comfortably and conveniently house diabetes devices. It won’t come as a surprise to many people that I spoke about language and communication, and the work Diabetes Australia was doing in this space and how it was the diabetes community that was helping spread the word.
I also remember the cardamom buns speckled with sugar pearls, but this is not relevant to the story, and purely serving as a reminder to find a recipe and make some.
So there we were, far away from the actual conference (because most of the advocates who were there didn’t have registration badges to get in), and very separate from where the HCPs were talking about … well … talking about us.
Twelve months later EASD moved to Munich. This time, Bastian had managed to negotiate with the event organisers for a room at the conference centre. Most of the advocates who were there for other satellite events had secured registrations badges, and could easily access all spaces. Now, instead of needing to schlep across town to meet, we had a dedicated space for a couple of hours. It also means that HCPs could pop into the event in between sessions. And a few did!
This has been the model for #docday° at EASD and, more recently, ATTD as well. The meetups were held at the conference centre and each time the number of HCPs would grow. It worked! Until, of course COVID threw a spanner in all the diabetes conference works. And so, we moved online to virtual gatherings which turned out to be quite amazing as it opened up the floor to a lot of advocates who ordinarily might not be able to access the meetings in Europe.
And that brings us to this year. The first large international diabetes conference was back on – after a couple of reschedules and location changes. And with it would, of course, be the global #dedoc° community, but this time, rather than a satellite or adjacent session, it would be part of the scientific program. There on the website was the first ever #dedoc° symposium. This was (is!) HUGE! It marks a real change in how and where people with diabetes, our stories and our position is considered at what has in the past been the domain of health professionals and researchers.
When you live by the motto ‘Nothing about us without us’ this is a very comfortable place to be. Bastian and the #dedoc° team and supporters had moved the needle, and shown that people with diabetes can be incorporated into these conferences with ease. The program for the session was determined by what have been key discussions in the diabetes community for some time: access, stigma and DIY technologies. And guess what? Those very topics were also mentioned by HCPs in other sessions.
There have been well over a dozen #docday° events now. There has been conversation after conversation after conversation about how to better include people with diabetes in these sorts of events in a meaningful way. There has been community working together to make it happen. And here we are.
For the record, the room was full to overflowing. And the vast majority of the people there were not people with diabetes. Healthcare professionals and researchers made the conscious decision to walk into Hall 118 at 3pm on Wednesday 27 April to hear from the diabetes community; to learn from the diabetes community.
If you missed it, here it is! The other amazing thing about this Symposium was that, unlike all other sessions, it wasn’t only open to people who had registered for ATTD. It was live streamed across #dedoc° socials and is available now for anyone to watch on demand. So, watch now! It was such an honour to be asked to moderate this session and to be able to present the three incredibly speakers from the diabetes community. Right where they – where we – belong.
DISCLOSURE
My flights and accommodation have been covered by #dedoc°, where I have been an advisor for a number of years, and am now working with them as Head of Advocacy.
Thanks to ATTD for providing me with a press pass to attend the conference.
Advocacy is a slow burn. I say those words every day. Usually multiple times. I say it to people with diabetes who are interested in getting into advocacy, not to scare them off, but so they understand that things take time. I say it to established advocates. I say it to people I work with. I say it to people in the diabetes world who want to know why it takes so long for change to happen. I say it to healthcare professionals I’m working with to change policy. I mutter it to myself as a mantra.
Slow. Burn.
But then, there are moments where there is an ignition, and you realise that the slow burn is moving from being nothing more than smouldering embers into something more. And when that happens I can’t wipe the smile of my face and I start jumping up and down. Which is what I was doing in my study at home at 2am, desperately trying to make as little noise as possible so as not to wake my husband and daughter who were sounds asleep in other rooms off the corridor.
The World Health Organisation conducted the first of its two focus group sessions for people with diabetes yesterday (or rather for me, early this morning), and I was honoured to be part of the facilitating team for this event. In the planning for the questions that would be discussed in the small break out groups, the WHO team had gone to great pains to workshop the language in the questions so they were presented in a way that would encourage the most discussion possible. That was the start of those embers being stoked.
I think that the attention to how we framed the discussion points meant that people thought about their responses differently.
The topics last night were about barriers to access of essential diabetes drugs, healthcare and technology. Of course, issues including affordability, health professional workforce, ongoing training and education were highlighted. These are often the most significant barrier that needs to be addressed.
But the discussion went beyond this, and time and time again, people identified stigma and misconceptions about diabetes as a significant barrier to people not being able to get the best for their diabetes. It certainly wasn’t me who mentioned language (at least not first), but communication and language were highlighted as points contributing to that stigma.
This recurring theme came from people from across the globe. It was mentioned as a reason for social exclusion as well as workplace discrimination. There was acknowledgement that perceptions of diabetes as being all about personal responsibility has affected how policy makers as well as community responds to diabetes – how serious they see the condition.
In the discussion about diabetes-related complications, the overall language had been changed from ‘prevention’ to ‘risk reduction’ and this was recognised in many of the discussions as a far better way to frame conversations and education about complications. This isn’t new – it was a recurring theme when a focus in the DOC was the hashtag #TalkAboutComplications. I wrote and co-wrote several articles about it, including this piece I co-authored with the Grumpy Pumper for BMJ.
The direction the discussions took were a revelation. No. It was a revolution!
So often at other events and in online debates when language and communication has been raised, conversation has been stalled by people pushing agendas about wanting to be called ‘diabetic’, as if this is the first and only issue that needs to be resolved. That didn’t even come up last night because the people who were highlighting the implications of language understood that when you look at the issues strategically and at a higher level, those details are not what matters.
What matters is looking at Communication with a capital C and understanding its influence. It elevated the discussion so far above the ‘it’s political correctness and nothing more’ that it would have been ridiculous to drag the discussion back to that level.
For years, there has been push back regarding communication because people have not stood back and looked at impact. That has changed.
When I wrote this four years ago highlighting that diabetes’ image problem diabetes – all those misconceptions and wrong ideas about the condition – has led to fewer research dollars, less understanding and compassion from the community, more blame and shame levelled at individuals … it was to emphasise that the repercussions have been significant.
Thankfully as more people started stepping back and considering big picture – health systems, policy, community education – I could see that there were shifts as some people stopped talking about political correctness and started asking what needed to be done to really move the needle. It seems that’s where the very, vast majority of people were during the WHO focus group
This diabetes #LanguageMatters movement stands on the shoulders not of the people who have elevated the issue in the last ten years (although those contributions have been massive!) or the position papers and guidelines that have been published (although those have certainly aided the discussion in research and HCP spaces), but rather, the people in the diabetes community who, for years, knew that language and communication was a driving factor in our care. People like those in the (Zoom) room yesterday.

Looking for more on #LanguageMatters
Click here for a collection of posts on Diabetogenic.
The Diabetes Australia Language Position Statement (Disclosure: I work at Diabetes Australia and am a co-author on this statement.)
The Diabetes Language Matters website which brings together much of the work that has been done globally on this issue. (Shout out to diabetes advocate Jazz Sethi for her work on this.)
DISCLOSURE
I was invited by the WHO Global Diabetes Compact team to be part of the facilitators at the Focus Group on Advancing the Lived Experience of People Living with Diabetes. I am happily volunteering my time.