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I stumbled across a book the other day called Women Holding Things. The author and illustrator, Maira Kalman referred to it as ‘love song to those exhausted from holding everything’. It’s quite gorgeous, with beautiful illustrations of all the things women hold – both literally and figuratively.
And I thought about what people with diabetes hold and just how weary and drained the weight of carrying diabetes and all that comes with it can be. I can’t draw, but here are my words that highlight some of the things we hold. It’s a love letter to the strength people with diabetes have gained through holding things, even when we want nothing more than to put it all down.
We hold on because we have no other choice but to do so.
We hold bags carrying around diabetes supplies – right now as I wait to board a flight, I have a separate bag with nothing more than sensors and pumps and alcohol wipes and spares of everything. I will hold it through airports, as I climb on planes, on ground transfer to hotels, and around with me through every step of my journey, a constant companion in my travels.
We hold cups of coffee because sometimes it feels like the only thing that will get us through the day.
We hold a fear of the future and what it can be, a shadow that sometimes stretches longer than we’d like.
We hold emergency hypo snacks ready for those unexpected moments. Or expected… (see: airports).
We hold guilt for some ridiculous reason because we shouldn’t and it is heavy and we would be so much lighter if we could let it go. But it’s there. We hold it.
We hold hope so close to our hearts, trying to balance up the fear or at least make a dent in its weight.
We hold insulin bottles and glucose monitoring supplies and all the little things that are needed to be replacement pancreases.
We hold anxiety and worry, and at times, a quiet uncertainty about what the next day, the next week, the next year holds.
We hold our diabetes friends close because they understand without needing explanations, and we hope that by being there for them as they hold us close, somehow there is a magic law of reciprocity that means we’re all holding less a little less diabetes.
We hold other diabetes stakeholders to account when they fall short of our expectations or fail to understand the nuances of our lived experiences, or underestimate our expertise. Or when they unleash a campaign that instils more fear.
We hold a steady gaze at research to see what our future life with diabetes might hold.
And we hold onto the promises, even the five-more-years promise that we know is a joke, but perhaps, just perhaps if we hold onto it tightly it might, it just might come true.
We hold our heads high as we advocate for better care, more understanding, and greater awareness.
We hold bottles of cinnamon, not because we know it’s a cure, but because it tastes great in the apple cake we’re holding onto for afternoon tea.
For those of us who can remember a before time, we hold on to memories about what life was like before we had to hold onto and carry diabetes.
We hold the hands of those whose diagnosis came after ours because we’re so grateful to those who came before us and held our hands.
We hold the key to lived experience and with it, we hold a unique perspective that must be listened to. Because we hold onto the belief that #NothingAboutUsWithoutUs
We hold a wealth of knowledge that comes from being a world class expert in our diabetes.
We hold a firm grip on the reality of life with diabetes because if we let that slip the consequences are too great to imagine.
We hold an inner strength that often surprises even ourselves.
Sometimes we hold back nothing as we tell our stories and and advocate for what is right.
We hold the power to change perceptions, influence policy, and inspire others.
We hold our spirits high when we feel we’ve had a win because holding onto those small victories carries us on through times where we feel we’re dropping the ball.
We hold our loved ones close, sometimes to protect them, sometimes to draw strength from their support.
We hold the courage to face each day, each challenge, with a bravery we often don’t credit ourselves for.
We hold a steady pace, because we know that diabetes is a marathon, not a sprint.
We hold onto the belief that it will be okay, that we will be okay. Because otherwise, there is nothing at all to hold onto. And that…that is just too heavy to contemplate.
Just what is the emotional labour associated with living with a life-long health condition like diabetes? I’ve been thinking about it a lot this week, firstly because I was asked to give a talk about it to a group of researchers to help them understand barriers they may experience with getting participants into their research. It was a great discussion, with plenty of questions and hopefully a new understanding of the burden diabetes unleashes on us. And then, I thought about it when I was feeling the weight of that burden – more so than usual.
The emotional labour of living with diabetes is a complex, often invisible force, shaping our lived experience in profound ways. It’s the mental and emotional effort we put into the never-ending demands of the condition. It’s accompanied by an inner dialogue that asks if we’re doing enough, trying enough, feeling enough, being enough. It comes on top of the physical labour of doing diabetes, which in itself, is significant. It’s an ever-accruing emotional toll of being perpetually alert, constant decision making and wondering how those decisions might impact our immediate and long-term health and wellbeing. The emotional resilience required to do diabetes each day is an additional burden of itself, the sum of all these parts equalling an unforgiving weight that, at times, just feels too damn heavy to carry anymore.
But it doesn’t end there. Living with diabetes is an act of advocacy in itself, even if that advocacy is for ourselves alone and whether we use the word or not. Some people who take on advocacy issues and causes, leading efforts, participating in them, speaking about them. Whether involved in advocacy as a paid day job, consulting-type role, voluntarily, or a hybrid version (me), all of it adds to the emotional labour of diabetes.
Of course advocacy can be energising – striving for better healthcare, pushing for more understanding, and campaigning for supportive policies are endeavours close to our hearts and seeing efforts result in stunning outcomes bolster our energy levels. Working together with others with diabetes to change our communities is motivating. But it can also be exhausting. Each act of advocacy draws from our already limited reserves. The constant need to explain, to justify, to fight for our rights and needs can lead to burnout, leaving us feeling drained and disheartened in a fight that seems unending.
That’s where I spent a lot of this week: drained, disheartened, devastated and frequently teary with the weight of advocacy casting a long, dark shadow.
I know that this is something people with diabetes speak about, and the mental health of diabetes is finally on agendas, but it still needs to be said that being adjacent to diabetes, or being a champion for mental healthcare doesn’t offer a true understanding of just what it feels like. The best allies I know are the ones who recognise this gap in understanding and do all they can to ensure they don’t add to it and try to learn by stepping back and not overshadowing our voices or efforts.
One of the ways people with diabetes have attempted to deal with this labour and resulting burnout is to build peer communities and networks. Solace from the weight of diabetes can be found in others with shared experiences in sanctuaries where our struggles don’t need to be explained but they are deeply understood. These are safe spaces where we exchange stories, share tips, and buoy each other’s spirits. These communities become a wellspring of support and encouragement, where our emotional labour is shared, and our advocacy efforts are collectively bolstered. Safeguarding those spaces is essential if we’re to draw strength from them rather than find ourselves being overwhelmed by them.
In recent years, I’ve found myself becoming more and more selective about where I find that support. Twitter was probably the first to be left behind as I no longer found it a safe space. I’m reminded of that any time I venture back an innocent tweet about my own diabetes choices is attacked from some low carb bro. I replaced the openness of social platforms with closed group chats of others with diabetes, knowing that the support was there without the risk of trolling. Those chats provide the light to guide my way through the shadows.
This week, with the heaviness of all that is diabetes weighing me down, it has been difficult to find that light. The networks I have are always there, but even that is sometimes not enough when everything is overwhelming. Hosting this week’s #docday°, and hearing from advocates from around the world doing incredible things wasn’t enough to help me see clear. I thought of how to push through this, and I don’t have an answer. Except this: One of the things we do so well in our community is lift each other up because our community and other people with diabetes are everything. And so, even while I am feeling weighted down, I can focus on that. And hope that in amplifying and cheerleading my peers with diabetes and their efforts, I’ll rise too.
Two community things you should know about…
Spare A Rose, Save a Life is continuing to accept donations here. Thanks to amazing advocate Tinotenda for driving this year’s campaign.
Sign and share this petition and read the consensus statement initiated by a group of #dedoc° voices which is calling for uninterrupted insulin access in humanitarian crises. Congrats to Lucia for coordinating this work.
Ten years ago, Australian Prime Minister Tony Abbott appointed himself as the Minister for Women. Much has been written about the message this sent and what the government of the time really thought about women, despite the carefully framed rhetoric being spewed in press releases and at doorstop press conferences. But this post is not a lesson in Australian politics. It merely sets the scene for me to speak about the underhanded ways that those whose voice should be heard are silenced.
Diabetes advocacy sits in an environment that often resists the voices of those most affected by diabetes, at times in somewhat sneaky ways. A wolf in sheep’s clothing in advocacy comes in the form of anyone claiming to advocate by ‘being the voice’ of people with diabetes, which is problematic not least because we have our own voices and don’t need others to speak for us. Being adjacent to diabetes does not give anyone license to speak on our behalf. In fact, the very idea that anyone thinks that they can represent those who should be centred is offensive.
It matters, by the way. When our insights are not the ones being heard, we find ourselves in a cycle of misunderstanding and misrepresentation. Our perspective must be heard because it is inevitably comes with the reality of diabetes. When a person with diabetes is asked about why we need to invest in better diabetes care, have better access to drugs and technology or improve funding in diabetes research, we will speak of how improved care leads to better engagement with our healthcare professionals, reduced emotional load and the resulting increased time we can spend with loved ones and being productive at work. We will speak about how increased access can equal decreased burden for us and what that means in our real lives. And we will speak about how research is the gateway for us to have better understanding of our diabetes, helping us make more informed decisions, and speak to how research has changed our lives to date. We speak about hope authentically because we hold onto it with both hands.
Someone speaking ‘on our behalf’ will inevitably focus on reducing burden to the health system (which often makes us feel as if we’re to blame for overwhelmed and overrun hospitals and adds to diabetes stigma) or resort to listing diabetes-related complications, a familiar trope that sounds like a shopping list that does well to scaring us! I spent years being a spokesperson for diabetes organisations and always ensured that the reality of day-to-day diabetes was part of the discussion, not just the rehearsed talking points that tell nothing of the people behind the numbers. Even more importantly, I learnt very early on in my own advocacy when it was not my voice that should be heard and ensured I had a network I could reach into to find the right person. I estimate that about ninety percent of the time I’m asked to give comment, I point whoever is asking in the direction of someone far better positioned to share their lived experience.
This year brought with it a new role where it was essential that I step into the background. I now find myself in the incredibly fortunate position of working with unbelievably brilliant grassroots and community advocates doing truly life changing work with people with diabetes across India. I am not here to tell their stories or about their work. I wouldn’t do it justice – I have more than enough self-awareness to know that. I recognise that they are the protagonists of their narrative. They are the ones doing living the experiences, doing the ground-breaking work, and pushing for change. My responsibility is to be an ally and a supporter, doing what I can to amplify their voices rather than overshadow them. Perhaps this speaks to my own confidence in my abilities as an advocate that I don’t feel threatened by others who are raising their voices. Effective advocacy thrives on collaboration and shared leadership, and I admire those in the advocacy world who willingly take a step back. I think it’s fair to say that others also see those who do that; and also those who do not.
There are more insidious and damaging ways that our voices are silenced. Let’s go back for a moment to our former Prime Minister. I said earlier that he made himself Minister for Women. Except, he didn’t. In fact, he abolished the position and moved it into the Office of PM and Cabinet, removing the seniority and decision-making powers it had previously held. Sure, he appointed Michaela Cash as an advisor, but this was no more than an exercise in tokenism. The reality was that the PM would have final control over decisions affecting women. Abbott bristled when questioned about his decision, refusing to listen to the myriad women and women’s groups criticising the move, instead responding defensively.
I use this as an example when consulting organisations about effective engagement and how to address commentary from the community they work with and for. Receiving criticism can be uncomfortable. However, by being open to how community responds and the feedback they generously offer, it is an opportunity for improvement and collaboration, rather than a threat to be neutralised. It’s incredibly disappointing when organisations respond by attempting to discredit or question the motives and expertise of those with lived experience or suggest that negative comments are part of efforts underpinned with ulterior motives. It’s disheartening to hear implications that individuals offering critical perspectives are merely being influenced by others, disregarding their ability to form independent thoughts and opinions. This is simply another way that community voices are effectively silenced, and proves to the community that contributions from those who should be heard are not valued at all.
I speak a lot about allyship as a pivotal force in including and amplifying rather than excluding and silencing the voices of those with lived experiences. Allyship is an active commitment to placing people with diabetes at the forefront of conversations; featuring them in all levels of decision making; putting them in the rooms where things happen. True allyship involves listening to and acting upon the needs and concerns of people with diabetes, even when what is being said is difficult to hear. What it isn’t is fantastic window dressing. We see right through that.
I wrote this piece while listening to Black Oak Ensembles 2019 album, ‘Silenced Voices’. It’s stunning.
I had a BIG birthday this week. It was lovely – spoilt by my gorgeous family and friends, a beautiful dinner, calls and messages and special deliveries from friends in far flung places. BIG birthdays are weird. There seems to be an expectation that we have BIG feelings about them. Some people have BIG negative feelings about them. Some people freak out. Some go through a crisis and suddenly feel as though they are facing their mortality. I haven’t felt any of those things, but people have been asking. And I’ve been at a bit of a loss as to how to respond.
I don’t feel bad about getting older. I like that the cliché about women giving fewer fucks about others’ opinions as they age has been true for me. I like that I’ve become more confident, and with that developed the ability to recognise a bout of imposter syndrome and swiftly dismiss it, knowing I’ve absolutely earned the seat at whichever table I am sitting. I like that I easily stare down and call out misogyny and have become better at identifying the misogynists who cloak their misogyny in faux allyship. I like that I have a group of strong, sassy, spectacular women around me and that we build each other up and celebrate each others’ triumphs. I like the respect my work receives, and I especially like that I now walk away from situations where that respect isn’t afforded.
The only one BIG feeling I have had is that ageing is such a privilege. I’ve felt that keenly this week as I’ve celebrated this BIG birthday. I’ve thought of friends who didn’t get to celebrate this BIG birthday for all sorts of devastating reasons, and of friends who have had some pretty serious medical emergencies of late. I flashed back to my darling sister being so, so unwell last year, noting that when it’s time for her next BIG birthday there will be fireworks to celebrate that she is with us. And I’ve thought about how if I’d been diagnosed with diabetes a few decades earlier, I may not be celebrating this week.
Diabetes has been a constant and unwelcome companion for over half my life now. I do have BIG feelings about that, none of them good. It entered my life and reshaped it in ways that I couldn’t have imagined, and even though my work – work that I love – is impossibly intertwined with my diabetes, I feel cheated that so much of my brainpower, my energy, my finances and mostly, my time has been sucked away by diabetes. I’ve never bought into the toxic positivity of diabetes superherodom, and flat out refuse to credit diabetes for the discipline and resilience I’ve been forced to adopt just to manage living. I get credit for that.
And I’ve thought this: Ageing is a privilege, but ageing with diabetes feels like a miracle, and believing that brings into sharp focus my diabetes brothers and sisters who might not get to celebrate BIG birthdays due to completely missed diagnoses, inadequate healthcare, or lack of access to drugs and technology. Over the last few years, we’ve heard more from our vast community about those experience and we need to hear more, and do more to help. And so, if I can be opportunistic on the occasion of my BIG birthday, an appeal to anyone reading. If you can, please make a donation to either Life for a Child or Insulin for Life; two charities doing so much to increase the chances of more BIG birthdays for people with diabetes in under-resourced countries. That seems like the best celebration possible.
On November 14, the world will literally light up in blue to celebrate World Diabetes Day. And here in Melbourne, an event highlighting one of the most important issues in diabetes today will be held. The entire event will be dedicated to how the global diabetes community is coming together to work to #EndDiabetesStigma. And you can be there!
I’m delighted to be sharing the hosting seat with Dr Norman Swan, physician, journalist and host of Radio National’s Health Report. A veritable A-Team of people from the international diabetes community will be part of the event, sharing their experiences of diabetes stigma and why efforts to end it are so necessary and timely. There will be representatives from the global lived experience community, diabetes organisations and health professionals and researchers. You really don’t want to miss it!
For those able to attend in person, you’ll have a chance to catch up with diabetes mates. Any chance for opportunistic peer support is a great thing and I’m so pleased that I’ll be seeing diabetes friends that I’ve not seen for a very long time.
This isn’t only for Melbourne locals. There will be a livestream for people around the world to watch, share and be part of on social media. It’s free to attend and will be a great opportunity to see the diabetes world come together on a day dedicated to us!
My Time in Rage over the past few days has been high; very high. That’s not a typo, I mean Rage (with a capital R). Since I published a post about airport security screening, a dozen people have messaged me with their tales of systemic failures that have left them feeling pretty damn overwhelmed. This is in addition to the myriad conversations I’ve had over the last twelve months. The situations may differ, but the underlying theme is consistent – this is a system that is not working, and people with diabetes are left exposed.
As systems break down, PWD are forced to deal with confusion, uncertainty, and a glaring lack of support. This is not confined to one specific area. I may have written about airports on Friday, but it spans across various aspects of our diabetes lives. The consequence is PWD in the firing line.
I’m forever thinking about the labour borne by people living with diabetes and how systems increasingly shift care responsibilities. Not only are we burdened with intricate care coordination and management, but also, we’re left exposed when navigating through systemic failures. Diabetes necessitates that those of us who live with the condition shoulder most of the care, but that burden shouldn’t then be compounded by systems that fail us – whether it be airport security checkpoints, or in healthcare settings.
Even worse, we know decisions are made around us, or without our direct input and when we highlight how things are not working, we are met with defensiveness and excuses. Inconsistencies, confusion, and a lack of clear communication may all be the reasons that things don’t work, but they are problems that are not ours to solve. It is not our role to make sense of chaotic labyrinths. We should not be expected to decipher the complexities behind systemic failures. Our focus should be on managing our diabetes, living our lives, and not on mitigating the fallout from systems that are supposed to support us.
I know that it can be argued that there are better ways to deal with matters than getting all rage-y. I agree with that; it’s counterproductive and draining. High Time in Range is often accompanied by distress, and hampered efforts to do diabetes well. It’s counterproductive and it’s draining. But sometimes, it really is difficult to keep that rage in check, especially when I believe that people with diabetes are getting a rough deal.
Australian airports seem to have become a battleground recently for travellers with diabetes. My own experiences since Australia opened back up to travel have been appalling and each week there are reports in online diabetes pages about some pretty horrendous experiences. Specifically, the problems are to do with full body scanners which have been rolled out across international security checkpoints nationally, and some domestic checkpoints.
This year alone in half a dozen international flights out of Melbourne Airports and a dozen or so domestic flights, all been much more difficult than any travel experience pre-COVID. I documented one particularly brutal encounter at Brisbane Airport last year in this Twitter thread. Sadly, since then, other instances have been just as awful.
It seems that the training modules for security staff have incorrect information about which scanning devices are safe for diabetes devices. In my experience, the messaging is consistent: staff have been told that the metal detectors (the older walk-through screeners) are unsafe while the newer full body scanners (the stand still and be scanned) are safe. This is at odds with information from device companies and health professionals and has resulted in a number of people reporting clashes at security checkpoints.
There’s so much discussion about this, as well as lots of confusion and some pretty dire misinformation across OzDOC socials, some of it coming from diabetes groups. Let me try to break this down with information that is based on advice from device companies and the Department of Home Affairs. This is what I have used to try to help me streamline my own travel experiences – with varying levels of success.
Firstly, let’s start with the Department of Home Affairs. This page has the information you need, but specifically, under the section Travellers who have a mobility aid, prosthetic, medical device or medical equipment is this: ‘If you have a medical device or medical equipment, it may streamline the screening process if you have a letter or medical identification card from your doctor or healthcare professional that describes the device or equipment. It is also recommended that you talk with your doctor, healthcare professional or check the manufacturer instructions for guidance on whether the medical device or equipment is suitable for screening by body scanner technology or X-ray technology, and if not, make the screening officer aware of any restrictions before beginning the screening process.’
Device companies all have their own advice, so familiarise yourself with what their recommendations. I wear a Dexcom, and carry a printed copy of security screening advice. At the end of this post you’ll find links and relevant information about the different devices available in Australia.
Knowing how tricky things are likely to be, I am super prepared for security checks now. I carry a letter from my endocrinologist that states I’m wearing diabetes devices that must not go through the full body scanner, and that my pump cannot be removed (not so relevant these days as I wear Omnipod). In a sign of just how much the times have changed, I now need to show that letter about 80% of the time at Australian airports. Pre-COVID I maybe needed to produce it twice in hundreds of journeys.
I always remain calm and clear about what I need: ‘I am wearing medical devices and cannot go through the fully body scanner. I can go through the metal detector, or I need a pat down. I’m happy to wait out of your way.’ I stand firm with this request, remaining polite and calm even when there is increasingly aggressive pushback. In most cases, security staff will tell me that the training says body scanners are safe and metal detectors are not. At this point, I offer the letter from my doctor and the printed out advice from Dexcom and mention the relevant information from the Department of Home Affairs. If there continues to be pushback, I’ll ask to speak with a supervisor. I truly hate doing this.
While this isn’t applicable to me now, at no point ever would I remove my insulin pump and hand it to security staff for inspection. Disappointingly, some of the device companies’ travel advice (and today I saw advice from a diabetes centre) suggests this. Don’t do it. I am happy for them to swab it while I hold it, but I won’t disconnect and hand it over. Items go missing and handed to the wrong person or could be damaged at busy security checkpoints.
I know others with diabetes are happy to go through whatever scanner they are directed to and have had no adverse issues and that’s great. But this isn’t about individual experiences so much as about how to manage situations according to manufacturers’ advice and knowing what official information from the relevant Government department is. It’s also about being treated respectfully and having our own lived experience and knowledge respected by security staff; something that sadly seems to be repeatedly forgotten.
If you’ve had a lousy experience and have the emotional labour to write a complaint to the airport, please do so. There are online forms you can use.
It would be really great if this additional work didn’t fall to people with diabetes. Device companies could step up here and provide cards to use at security checkpoints, similar to those that have been developed for people with pacemakers and knee and hip replacements. Simultaneously it would be great if there was a form that could be personalised and printed out or a card issued via the NDSS when people register for pump and/or CGM access (this wouldn’t serve people who are self-funding, but it would reach the majority of Australians affected). While I am sure that there are efforts underway to address it, there’s no time to wait and a temporary fix is needed immediately. And any other advocacy groups who are addressing this issue can make sure that the advice they are providing on behalf of their diabetes community is accurate and best serves the needs of people with diabetes.
Advice from device companies in Australia
AMSL has this advice for Dexcom users: ‘Use of AIT body scanners has not been studied and therefore Dexcom recommend hand-wanding or full- body pat down and visual inspection in those situations.’
Insulet Australia has this advice for Omnipod users: ‘The Omnipod DASH® PDM and Pods are safe to go through the x-ray machine and the Pods are safe to be worn through airport scanners.’
AMSL has this advice for Tandem T:Slim users: ‘your Tandem Diabetes Care insulin pump should NOT be put through machines that use X-rays, including airline luggage X-ray machines and full-body scanners.
Medtronic has this advice: ‘Your pump should not go through the x-ray machine that is used for carry on or checked luggage or the full body scanner.’
Abbott has this information for FreeStyle Libre wearers: ‘The FreeStyle Libre reader and the FreeStyle Libre sensor can be exposed to common electrostatic (ESD) and electromagnetic interference (EMI), including airport metal detectors. You can keep your FreeStyle Libre sensor on while going through these. However, the FreeStyle Libre reader and the FreeStyle Libre sensor should not be exposed to some airport full body scanners.’
Diabetes stigma is a hot button topic in the diabetes world. It has been for some time. I wrote just last month how stigma was one of the most talked about issues at ADA. That week, we also launched an Open Letter from the Diabetes Community, asking health professionals to join us in our call to stop diabetes stigma.
And behind the scenes, for all of this year, another exciting, BIG, project has been hatching and I’m so excited to share it today.
Earlier this year, in an unprecedented show of unity and determination, a group of 51 experts from 18 countries joined forces to pool our lived, research and clinical experience to address diabetes stigma and discrimination. Together, we’ve reviewed the scientific evidence and established an international consensus on 49 Statements of Evidence and Recommendations. The full report on this review has been submitted and is currently under review.
Excitingly, the group also reached a consensus on a Pledge dedicated to bringing an end to diabetes stigma and discrimination. And that’s where you come in! Everyone can sign to show your commitment stop the ingrained negative judgments, stereotypes, and prejudices that influence attitudes about diabetes, and contribute to the stigma so many of us face. This isn’t just for the community. We know there is sometimes an echo chamber as we say the same things to each other, over and over. We also know that while diabetes stigma is indeed prevalent within our community, we also need to tell the story of its harm outside the diabetes world.
Well, here’s an easy way to do both. Please sign the pledge and share details across your social platforms. You can sign as an individual, and we’d also love for you to see if your place of work, school, community group, hospital, church, sporting team, favourite cafe…basically anywhere that is likely to come into contact with people with diabetes (i.e. literally everyone!) would be interested in signing too.
This is a true community effort, with involvement from stakeholders from across the diabetes landscape, across the world. You won’t see logos anywhere, because this for and about all people with diabetes. The names of the people involved in the work so far is on the website.
Are you with us?
All too frequently, when talking about meaningful lived experience engagement, I hear about ‘Hard to Reach Communities’. A number of years ago, I called rubbish on that, putting a stop to any discussion that used the term as a get out of jail free card to excuse lack of diversity in lived experience perspectives.
‘People with type 2 diabetes don’t want to be case studies’ or ‘Young people with diabetes don’t respond to our call outs for surveys’ or ‘People from culturally and linguistically diverse communities won’t share their stories’ or ‘Folks in rural areas don’t come to our events’. These are just some real life examples I heard when asking why there was no diversity in the stories I was seeing.
See how the blame there is all on the people with diabetes? They don’t want, don’t respond, won’t share, won’t attends. It’s them. They’re the problem. It’s them.
I stood on stage at EASD in Stockholm last year and challenged the audience to stop using the term ‘hard to reach’. Because that’s not the case at all. The truth is that in most cases, the same old, uninventive methods are always employed. And those methods only work for a very narrow segment of the community.
I recently heard someone begrudge that all applicants who responded to a recent call out for a new committee were the same: white, had type 1 diabetes, city-dwelling. ‘Of course they are,’ I said. ‘That’s the group that loves a community advisory council and responds to an expression of interest call out on socials. They are able to attend meetings when they are scheduled, are confident to speak up and are willing to share their story, because they probably have before and received positive feedback for doing so Plus, they’re expecting everyone else at the table will look and sound just like them.’
But the lack of diversity isn’t the problem of the people who didn’t respond. It’s the problem of whoever is putting out a call and expecting people to reply because that’s how it’s Always Been Done.
This was a discussion at a meeting during last week’s American Diabetes Association Scientific Sessions. The #dedoc° voices were meeting with the ADA’s Chief Scientific Officer, Dr Bob Gabbay, and Vice President in Science & Health Care, Dr Nicole Johnson. The question about how to reach a broad audience was asked. At #dedoc°, efforts have been made to attract a diverse group of people to our scholarship program, and have, to a degree there as been some success. A glance at any one of the #docday° events, or scholarship alumni will see people who had not previously been given a platform within the diabetes community. But there is always more than can be done.
The discussion in that meeting at ADA mirrored many that happened throughout the week. And it’s not surprising that US diabetes advocate Chelcie Rice came up with the perfect way to explain how to do better at engaging with the who have previously been dismissed as ‘hard to reach’. He said: ‘You can’t just put pie in the middle of the table. Deliver the pie to where they are.’ And he’s right. Those tried and true methods that work for only one narrow segment of the community have been all about putting pie in the middle of the table, knowing that there will be some people ready with a plate and a fork. But a lot of people are not already at the table, or comfortable holding out their plate. Or maybe they don’t even like that pie. But we never find out because no effort is really made.
Chelcie once said ‘If you’re not given a seat at the table, bring your own chair‘ and I’ve repeated that quote dozens, if not hundreds of times. And his words ring very true for people like me who have felt very comfortable dragging my own chair, and one for someone else and insisting that others scramble to make room for us. But that metaphorical table isn’t enough anymore. Not everyone wants to sit at a table and we need to stop expecting that. Instead, it’s time to find people where they are – the places, the settings, the environments they feel comfortable and at home. That’s how you do engagement.
On day 2 of the American Diabetes Association Scientific Sessions, rushing between meetings, I overhead another attendee say this: ‘I’ve never heard so many people talking about diabetes stigma’. I turned to them, a bright smile on my face and said, ‘I know, right?’, (a phrase I only ever utter when I’m in the US).
Just a few hours earlier, Jazz Sethi and I had tweeted simultaneously, setting free an open letter from the diabetes community about diabetes-related stigma. You may have seen it; thousands of people have. And others have shared, commented and even translated it into different languages (I think we’re at 6 translations and counting). Here it is!
When we first asked advocates from the community if they would like to add their logo to the letter we were surprised by the quick response. Almost everyone we went to said yes. We hadn’t gone out too widely – we wanted to test the waters first. The first version of the open letter includes advocates and peer support groups from across the world. Amazing!
And after our very low-key, (i.e. a couple of tweets from unverified Twitter accounts, so who knows what the algorithm did with them!), we were once again inundated by people asking for us to add their logos. (We haven’t managed to add them yet, but absolutely will in coming weeks. Please give us time if you’ve shared your logo. We’ll get there. And I’ll update this post with the new final page when that happens.)
There is something magic about these sorts of very grassroots, very community, very inclusive initiatives. Not only are they great because they collaboratively offer a narrative from people with diabetes, highlighting an issue that is of great importance to many. They also show you just how powerful and united our community is while also pointing to individuals and groups who are keen to work together, support each other and power the importance of lived experience. And that’s pretty special!
Diabetogenic 