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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. 

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. 

Gosh, it’s been a hot minute since I last did one of these. The whole point of Interweb Jumble posts on Diabetogenic is to highlight anything that has caught my interest in the online diabetes world, write about initiatives I’ve been involved in, and, most importantly, to elevate the great work being done by others living with diabetes. Building folks up and promoting their amazing efforts has been at the heart of what I do, so I’m always happy to share what others are doing.

Grab a coffee, tea or shandy, (Don’t. Don’t grab a shandy), and read on.

Diabetes Chat

YES!! There is a new place to congregate online, in a different format, and with this one, you get to hear people’s voices. (Sorry to everyone who had to endure my 7am Aussie accent last Tuesday!). This is a new initiative that’s been set up by three DOC folks – Tom from the UK, and Chris and Sarah from the US, utilising a new feature on Twitter called Spaces. It’s a terrific way to host an online peer meeting, creating yet another time and place that is BY people with diabetes, FOR people with diabetes. There is a weekly guest who gets put through their paces with terrific questions from the hosts and those listening in, and an open mic chat time as well. 

It’s super impressive to see people from all over the globe participating. It reminds me a little of the DSMA tweetchats which are very welcoming and open to all, regardless of where you live around the world. 

Search #DiabetesChat on Twitter for more.

dStigmatize

The team at diaTribe has once again tapped into one of the important issues, and much spoken about topics in the diabetes community and developed a terrific new website addressing diabetes stigma. It’s called dStigmatize and you can find it here

I’m delighted to see Diabetes Australia’s work on stigma and language highlighted so prominently on the site (disclosure: I work at Diabetes Australia and have been involved in this work), including the videos from last year’s Australian National Diabetes Week campaign, which have been viewed hundreds of thousands of times. 

Seasons of…diagnosis

New research out of Finland asked if more people were diagnosed with type 1 diabetes during colder months. You can read the paper here.

And a discussion on Twitter about it here.  

HypoRESOLVE podcast

The HypoRESOLVE comms team created a new podcast to showcase the incredible work of this researchers involved in the project, with a strong emphasis on how people with diabetes are involved in the project. I was delighted to host this podcast and speak with some truly remarkable clinicians and researchers as well as other people with diabetes who are on the projects Patient Advisory Committee. (Disclosure – I am on the HypoRESOLVE PAC. PAC members are now paid an honorarium for our time working on this project, however we were not at the time of recording or working on this podcast.)

Here is the most recent episode (on Spotify). 

Better engagement with PWD = better services

Great paper from a team out of the UK looking at how connecting with the lived experience expertise of people with diabetes, health professionals and diabetes health services can improve service delivery. 

One of the co-authors is one of the GBdoc OG, Laura (@Ninjabetic1 on Twitter), and it’s great to see her name back in the diabetes world, contributing to this important discussion. 

And the DDA podcast…

The Danish Diabetes Academy developed a podcast out of their Winter School that featured Postdocs who had participated in the academy speaking with others in the diabetes world to discuss who academic researchers work to ensure their research reaches and benefits those they are researching. I was so honoured to be invited to be interviewed for their first episode and answered questions about how communication is important when engaging people with diabetes to be part of the research process. You can listen here.  

Language Matters for Portuguese speaking friends with diabetes!

The latest in the Diabetes #LanguageMatters stable is this document out of Brazil. Always terrific to see more and more statements coming out, highlighting the importance of language and communication in diabetes. 

Thinking of starting on an insulin pump?

If so, the awesome Grainne at Blood Sugar Trampoline has you covered with this post. It is truly one of the most measured pieces I’ve read about things to consider if you are on the path to starting an insulin pump. The gushiness and superlatives that many of us resort to when banging on about how much we love our pumps are replaced with sensible, and practical advice and suggestions. If this is where you’re thinking of taking your diabetes management, Grainne’s piece is a must read.

Who doesn’t want to come to ATTD!? 

#dedoc° voices is back and heading to ATTD in April this year, and applications are still open if you would like to be considered as part of the program. Successful applicants will be granted access to the entire ATTD program, giving them an opportunity to share what they see and learn with their networks. Make your submission count – this is a competitive process and success is more likely for those who take the time to provide details of how they will be involved in the program. Details here

(Disclosure: I am an advisor to the #dedoc° voices program. I do not receive any payment for this role.) 

World Health Organisation

In March, the World Health Organisation, through the Global Diabetes Compact, is hosting a two-day focus group for people with lived experience of diabetes. If you’re interested in getting involved, there is an expression of interest process you can complete here

Also from WHO is this survey which is asking people with diabetes how to improve messaging and communication. You only have until 28 Feb, so get onto it now! (Disclosure: I was a volunteer consultant in the development of this survey) 

Massive kudos to the Global Diabetes Compact team who are doing an absolutely stellar job engaging with the community. Always so terrific to see!

A diabetes sea shanty…

You’re welcome.

(Follow @TypeWonDiabetes on Instagram here.) 

People with diabetes and their involvement in research

An end of year delight was this article that I co-authored making it to publication. The article is about how to better involve people with health conditions in research (which really seems to be something I’ve been very focussed on recently!). 

Spare a Rose – last push

February still has a last few days which means that Spare a Rose isn’t over yet. You can still donate and contribute to this year’s total and support people with diabetes in under-resourced countries through the Insulin for Life program. 

Over the last two days (or last two middles of the night if you’re perpetually in the wrong part of the world as it seems I am), I participated in the excellent first World Health Organisation Global Diabetes Compact Forum. (You can read the Compact which was launched earlier this year here.)

Once again, the WHO team had brought together stakeholders, including diabetes advocates, from across the world to talk about some critically important challenges facing people living with diabetes. These included access to insulin, research and innovation and prevention, health promotion and health literacy. The Forum was definitely not a ‘sit and be lectured to’ event. It was interactive, with everyone having the opportunity to participate and share their experiences and perspectives. The chat function was open and there was a constant stream of engaging, energetic discussion and sharing. 

The final session was about prevention and in his introduction, James Elliot, who expertly moderated the event, laid the foundation for the discussion. As with the previous sessions, there were no pre-conceived ideas or narrow focus about the topic. 

Prevention isn’t just about prevention of type 2 diabetes. There is a lot of work also going on looking at prevention of type 1 diabetes. And also, once living with diabetes, looking to do what we can to prevent diabetes-related complications.

When I spoke, the first thing I wanted to highlight was the problem I feel with the word prevention, and I revisited previous discussions in which I’ve been involved which highlight the struggle I feel with the word prevention. For too many people it is a word that offers a promise – a promise which guarantees that we can prevent aspects of diabetes that are often well beyond our control. I presented my case for instead focusing on how reducing risk is a far more accurate description of what efforts are truly about, a perspective that I have noticed is being used more and more.

The discussion pivoted to being about complications and associated stigma. Thankfully, this is not the start of the conversation about diabetes-related complications and the way people see them. When I wrote this piece back in 2013, I wrote about the way complications were presented to people with diabetes and how non-modifiable factors such as genetics, are rarely part of the conversation. There seemed to be a very one-dimensional presentation of diabetes-related complications: ‘take care’ of yourself, and you won’t get them. 

With communication around complications starting to be included in the language matters movement, I could see that too many people had been told that over-simplistic tale. 

It all got taken up a very significant notch when there was a concerted effort in the DOC to encourage dialogue about diabetes-related complications in a non-judgemental and safe way. Suddenly, we were seeing the hashtag #TalkAboutComplications accompany people’s stories, or questions others might have. This led to a real shift, as more and more people shared their experiences, with many saying that it was the first time they had seen others being so open about what was often considered a taboo topic. Starting to peel away the shame and secrecy of what can be a scary part of life with diabetes allowed many people to seek support from peers and help from health professionals. 

The legacy of the #TalkAboutComplications idea is that is that there are far more conversations today about diabetes-related complications. There is also a plethora of blog posts, podcasts, journal articles and conference presentations about the topic. I know that there is still significant stigma that we need to chip away at, but actually being able to easily find places online where conversations about complications are normalised and being part of those conversations is contributing to reducing that stigma. 

The session at the Global Diabetes Compact Forum was terrific because it tied together diabetes-related complications and stigma. With the theme of access this World Diabetes Day, perhaps we need to think about what that means when it comes to diabetes-related complications. While we absolutely do need to think about all factors at play when it comes to the development of complications, we also need to acknowledge that access is a factor when it comes to outcomes. Access to the right information, including information about risk reduction, access to insulin, access to glucose monitoring devices, access to complications screening, access to early diagnosis and treatment, access to peer support, access to stigma-free treatment, access to mental health support…all these have the very real potential to influence outcomes. 

Last week’s Diabetes Australia Language Matters Global Summit was a terrific, snack-sized event that packed a lot into (just over) an hour. An absolutely stellar panel including Greg Johnson, Jane Speight, Partha Kar, Stephanie Haack, Nina Tousch and Tim Skinner made for an interesting, hopeful, encouraging and enjoyable discussion. I’m really proud of the way we were able to bring together people with diabetes, clinicians and researchers, offering different perspectives and ideas about why language matters.

During the event, Diabetes Australia launched our latest Language Matters Position Statement – ten years and one month after we launched our first. You can find it here.

If you missed the Summit, you can watch below.

Disclosure

I work at Diabetes Australia. I was involved in organising this event and hosted the panel discussion. I’m sharing this because I am choosing to.

Last month was the tenth anniversary of Diabetes Australia first launching a position statement about diabetes and language, encouraging everyone – health professionals, researchers, the media and the general public – to be conscious of just how powerful the words used about diabetes can be.

People with diabetes already knew this – we’d been speaking about it for decades. But to have a document supported by research certainly did add some weight to the discussion. It started a global movement and other diabetes organisations and groups have since launched their own guidance statements and documents motivating the use of language that doesn’t shame, blame and stigmatise diabetes.

Today, I’m so delighted to be hosting a panel with some of the people who have been instrumental in elevating and advancing the #LanguageMatters movement all around the world. You can watch from the Diabetes Australia Facebook page – there’s no need to register. And, I’ll share the full video of the Summit on here some time in the next couple of days.

Disclosure

I work at Diabetes Australia. I have been involved in organising this event and will be speaking at it. I’m sharing simply because I’m beyond exited that it’s happening and am hoping to see lots and lots of you there!

I’m a huge fan of New Yorker cartoons, (clearly – they’re littered throughout this blog!), and the artists that make real life situations come to life using humour, satire and more than a little cynicism.

Sometimes I hoot out loud at the sheer brilliance of what I am seeing. Other times I smile wryly. This time I gasped in absolute shock and horror. And familiarity.

Click for details.

It’s from February 2016, and seems to have been frightfully prophetic for our COVID times. As ‘underlying conditions’ has become barely-concealed code for ‘half dead anyway’, artist, Frank Cotham seems to have had a futuristic glimpse into the 2021 minds of conservative politicians and commentators.

Stay strong, my friends with diabetes and other underlying conditions. You matter. We all do. And living longer absolutely is right for us.

I probably should stop thinking of my job as ‘my new job’. I’ve been at Diabetes Australia now for well over five years. But for some reason, I still think of it that way. And so do a lot of other people who often will ask ‘How’s the new job?’

Well, the new job is great, and I’ve enjoyed the last five years immensely. It’s a very different role to the one I had previously, even though both have been in diabetes organisations. 

One thing that is very different is that in my (not) new job I don’t have the day-to-day contact with people with diabetes that I used to have. That’s not to say that I am removed from the lived experience – in fact, in a lot of ways I’m probably more connected now simply because I speak to a far more diverse group of people affected by diabetes. But in my last job, I would often really get to know people because I’d see them at the events my team was running, year in, year out. 

Today, I got a call from one of those people. (I have their permission to tell this story now.) They found my contact details through the organisation and gave me a call because they needed a chat. After a long time with diabetes (longer than the 23 years I’ve had diabetes as an annoying companion), they have recently been diagnosed with a diabetes-related complication. The specific complication is irrelevant to this post. 

They’ve been struggling with this diagnosis because along with it came a whole lot more. They told me about the stigma they were feeling, to begin with primarily from themselves. ‘Renza,’ they said to me. ‘I feel like a failure. I’ve always been led to believe that diabetes complications happen when we fail our diabetes management. I know it’s not true, but it’s how I feel, and I’ve given myself a hard time because of it.’ 

That internalised stigma is B.I.G. I hear about it a lot. I’ve spent a long time learning to unpack it and try to not impact how I feel about myself and my diabetes. 

The next bit was also all too common. ‘And my diabetes health professionals are disappointed in me. I know they are by the way they are now speaking to me.’

We chatted for a long time, and I suggested some things they might like to look at. I asked if they were still connected to the peer support group they’d once been an integral part of, but after moving suburbs, they’d lost contact with diabetes mates. I pointed out some online resources, and, knowing that they often are involved in online discussions, asked if they’d checked out the #TalkAboutComplications hashtag. They were not familiar with it, and I pointed out just how much information there was on there – especially from others living with diabetes and diabetes-related complications. ‘It’s not completely stigma free,’ I said. ‘But I think you’ll find that it is a really good way to connect with others who might just be able to offer some support.’ 

They said they’d have a look. 

We chatted a bit more and I told them they could call me any time for a chat. I hope they do. 

A couple of hours later, my phone beeped with a new text message. It was from this person. They’d read through dozens and dozens of tweets and clicked on links and had even sent a few messages to some people. ‘Why didn’t I know about this before?’, they asked me. 

Our community is a treasure trove of support and information, and sometimes I think we forget just how valuable different things are. The #TalkAboutComplications ‘campaign’ was everywhere a couple of years ago, and I heard from so many people that it helped them greatly. I spoke about it – particularly the language aspect of it – in different settings around the world and wrote about it a lot.

While the hashtag may not get used all that much these days, everything is still there. I sent out a tweet today with it, just as a little reminder. All the support, the connections, the advice from people with diabetes is still available. I hope that people who need it today can find it and learn from it. And share it. That’s one of the things this community does well – shares the good stuff, and this is definitely some of the good stuff!

Want more? 

Check out the hashtag on Twitter here.

You can watch a presentation from ATTD 2019 here

Read this article from BMJ

Over the weekend, I could not stop thinking about the words ‘from’ and ‘with’, specifically when used before the word COVID. The reason for this is that there seems to have been a subtle shift in the language used by NSW government and health officials when speaking about people dying during this wave. You see, rather than saying people are dying FROM COVID, they’ve started to say dying WITH COVID.

It means something different. It suggests that the person didn’t die from the virus, but from other factors. This is on top of the over-emphasis made at pressers about how people who have died have underlying conditions (I wrote about that last week). The implication is that the person was already unwell; that they were dying anyway.

I know I’m a little fragile at the moment, but not fragile enough to not get fired up when I see language being used in a harmful way, and negatively framing people with chronic health conditions. And so, today, I wrote to the Premier of NSW about this issue.

Here’s what I wrote:

______________________________________

Dear Premier Berejiklian

My name is Renza Scibilia, and I am not one of your constituents. I don’t live in NSW, so you may be inclined to simply disregard this message. I hope you (or rather, someone from your team) will read it, because I know that what I have to say is relevant to many people in your state. In fact, I am sure that you have heard similar sentiments from people in NSW and I am adding my voice to that choir.

I don’t envy the position you are in right now and I’m not here to complain or credit the work you are doing regarding the current serious wave of COVID-19 in your state.

But I would like to make comment on something that is very close to my heart and an area in which I have some experience – health communications.

Communication matters. The words that people use are sometimes employed flippantly and sometimes they are employed deliberately. Either way, they are important. I fear that a change in the words you and your team have recently started is a deliberate move and I believe it is harmful to people like me. When speaking about the tragic deaths of people during this COVID-19 wave, you are now saying they die WITH COVID-19 rather than FROM it.

It may seem ridiculous to draw attention to words that appear so immaterial. Except, of course, they are not immaterial at all. And I believe that the shift is deliberate. And it does a great disservice to the people to whom you are referring.

I live with type 1 diabetes. It’s undoubtedly a serious condition, and one that I have had to manage for the last 23 years. On a day-to-day basis, I do quite impressive mathematical calculations as I measure glucose levels, dose insulin, consider my activity, and monitor my stress levels. This takes time – a lot of time. Outside of diabetes-specific care, I eat well, walk 10K steps a day, and manage my wellbeing as best I can.

Beyond what I do each day, I remain on top of my longer-term diabetes and overall health. I never miss screening checks – diabetes or otherwise; I have annual health checks and I can tell you my BP, resting heart rate, HbA1c, lipids and cholesterol. Most people my age are not this switched on with their health and wellbeing, and because I am, I can confidently say that I am healthier than a lot of people my age.

And so, when you use sweeping statements suggesting that if someone like me was to be diagnosed with, and die from COVID-19, that the reason for my death is my health condition you are not correct. I am not already dying from diabetes.

There is a difference between dying FROM COVID-19 and dying WITH covid. Your change in language is an insult and is upsetting to people like me and it is also misleading. I am healthy, I am fit and if I got covid and died, it would be because of the virus not because of my type 1 diabetes.

I urge you to reconsider how you are speaking about people like me. It is heartbreaking for us to know that in the minds of some, our lives, and our deaths, are so easily explained away. While I am sure your intention is not to make us feel as though we are nothing more than collateral, that is how it sounds. The language you are using frames us and our health conditions as being to blame. It makes us sounds and feel as though we already have one foot in the grave and I can assure you that is not the case.

Language matters, words matter. Please, please be careful when selecting yours.

Sincerely,

Renza Scibilia
Melbourne

The current COVID-19 situation in Australia is not great. We seem to be on the cusp of a major outbreak, centred on a growing wave of new diagnoses out of NSW. Watching it all unfold from Victoria is somewhat triggering, and eerily familiar. The difference in 2021, of course, is that we now have vaccines to help combat the virus. Admittedly, our vaccine rollout is nothing short of a disaster, and that’s a massive problem when there is an outbreak like the one we’re facing right now. 

And so, that brings us to last night’s latest throw-shit-at-the-wall-and-hope-something-will-stick approach that seems to be the method preferred by the Australian Government. And the latest shit is a new advertisement with the aim of encouraging people to get vaccinated. For the record, it hasn’t stuck.  

I’m not going to share the ad because it is traumatising. The general gist is that it shows a woman who appears to be under forty years of age in hospital with COVID struggling to breath. She is intubated. 

It is terrifying. 

Setting aside the fact that the woman in the ad probably couldn’t have been vaccinated even if she desperately wanted one (our rollout is still being managed by age, and under 40 year olds are certainly not anywhere near at the top of the queue yet), or that, according to healthcare professionals, there is no way that she would have been left untreated if she was struggling to breathe in that way, the way this advertisement has missed the mark is outrageous for a number of reasons:

It blames the individual for not doing the right thing rather than looking at the systemic issues that have hampered the rollout, which includes precuring enough vaccines, starting the rollout late, blundering the messaging, messing up distribution … and everything in between. 

It terrifies people and is likely to not illicit a response other than fear. 

There is no consideration for people who have COVID right now. How would family of someone currently in hospital feel seeing this? How traumatising would it be?

I watched the ad – once only and with the sound down after the first 4 seconds – and felt a ginormous sense of déjà vu. A fear-based ad campaign has been the basis of diabetes campaigns for many years, despite pleas from the diabetes community to do something better, and a realisation that the general community wasn’t bothering to pay attention. 

Thankfully, in recent years here in Australia, we’ve moved away from scary ads, understanding that we can provide a hard-hitting message without using scare tactics. Diabetes Australia has absolutely nailed that in recent years, firstly with a three-year campaign raising awareness about the signs and symptoms of type 1 and type 2 diabetes. And we are now in year two of a campaign looking at the mental health aspects of diabetes. (As ever – my disclosures are important. I work at Diabetes Australia and have been involved in all these campaigns.)

Advertisements based on fear and blame don’t work. Last night, I kept seeing people online harking back to the Grim Reaper campaign that was launched in the 1980s to raise awareness of AIDS, some claiming that it was brilliant because they still recall it. I remember the TV ads. But what I know now, but didn’t know then, was that one of the major flow-on effects from this campaign was stigma directed towards gay men – added stigma, I should say. This stigma took many years to turn around. Notoriety doesn’t not equal an effective campaign. 

But jeez, it sounds familiar! 

Here we are this week talking diabetes-related stigma and how we undo it, and part of that stigma – the misunderstandings about diabetes – came from campaigns being run by diabetes organisations. While I’m thrilled that here in Australia we’re doing a better job at moving away from that (albeit with a hiccough here and there), not all people working in diabetes organisations got the memo. It was just eighteen months ago that I sat on a panel with the incoming IDF President and had to address his idea that ‘fear arousal’ was worth considering as a way to raise awareness of the seriousness of diabetes. 

No. 

Just. No. 

And so, back to the disaster of the COVID vax ad. If only instead of terrifying, there was a focus on incentivising. If only instead of putting all blame on the individual, there was a celebration of communities coming together. If only instead of finger pointing at people desperately ready to get a jab there was acknowledgement of how difficult and confusing it’s been. 

If only…

This was my response to Professor Andrew Boulton’s suggestion that we use ‘fear arousal’ in diabetes campaigns. I wasn’t having any of it. Footage from the International Diabetes Congress in Busan, December 2019. Thanks to Georgie for the video, which was first shared on in this tweet.
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