Diabetogenic

Guidelines for effective partnerships

March 13, 2024 in Advocacy, Awareness, Communication, Community, Diabetes, Engagement | 1 comment

The #dedoc° symposium kicked off ATTD 2024 in the most powerful way. Four community advocates from across the globe presented on a variety of topics including access to insulin during humanitarian crises, access to diabetes care and technologies in low income settings, accessibility of technology for people with diabetes also living with disabilities, and access to research findings. You can hear the brilliant talks from #dedoc voices Leon Tribe, Tinotenda Dzitiki, NurAkca and Asra Ahmed here.

During the panel discussion, there was an important discussion about how and why it is critical for people with diabetes to be included in all conversations about diabetes. Meaningful consultation is the golden ticket here, and there were some valuable comments and suggestions about how that happens. Someone asked the question about reimbursement for lived experience expertise, an often ignored issue when it comes to people with diabetes being involved in research, programs, committees and anything else that takes our time. Our unique perspective cannot be provided by anyone else, and yet there is rarely budget to cover the costs of our participation. Sadly, it’s not routine to offer payment for our time, instead we are often made to feel that we should be grateful for a seat at the table. It’s worth reminding those who don’t value us in a financial way that WE ARE THE TABLE and without us, there wouldn’t be a place setting for anyone else.

It was clear from the conversation that diabetes advocates – even those sitting on stage at International scientific conferences – find it difficult to ask for their valuable expertise and time to be reimbursed.

I jumped off stage and made a bee line for Jazz Sethi. We do this thing at conferences that I’ve started referring to as the ‘Jazz and Renz conference special’. (You can see previous efforts here and here.) Within five minutes we’d hatched a plan for our next project, and today, we’re so excited to share it. It was clear that we need some ‘Rules of Engagement’ that provided a clear and easy way for people with diabetes and those seeking to work with us to understand not only why engagement and consultation is essential, but why it’s also essential to pay for our time.

It’s not just about reimbursement though. It’s also about recognition for that work in a multitude of ways including being included as a co-author on publications, included on programs giving presentations and having our expertise acknowledged as just as important as all other diabetes stakeholders.

And so, here are some simple guidelines that can be used by people with diabetes when working with organisations, researchers, healthcare professionals, industry and anyone else who wants out expert knowledge. Use them in your discussions with anyone who invites you to be involved in diabetes work. Print them out and take them with you when you’re meeting with anyone running a project or convening an advisory group. Share them in your networks so as many people as possible can use the information to guide discussions about ensuring our value is truly acknowledged. We hope that this will make those discussions just a little easier.

And for those who wish to work with us, have a read. If you still think that our time isn’t worth your budget, or our expertise worth real recognition, then it can only be considered that you are doing the very least to include people with diabetes. That’s tokenism. We’re not here for that anymore.

GUIDELINES
FOR
EFFECTIVE PARTNERSHIPS
AND
IMPACTFUL
COLLABORATIONS
with the diabetes community

#NothingAboutUsWithoutUs

Introduction
Meaningful Engagement
People living with diabetes offer a unique perspective across all domains of diabetes healthcare, research, campaign development, and technology. #NothingAboutUsWithoutUs embodies the principle that people with diabetes must be central to every discourse concerning the condition.
Engagement takes many forms, including:
Community advisory boards • providing feedback • appearing in campaign materials • social media posts • speaking engagements including panels • attending multi-stakeholder meetings • consulting for research.
Expertise, stemming from diabetes lived experience holds equal, if not greater, importance than contributions from all other diabetes stakeholders.
When acknowledging the importance of community involvement, it's essential to recognise that people with diabetes will be undertaking these activities in addition to professional and personal responsibilities, and the ongoing management of diabetes.

The Guidelines
Outlined are fundamental guidelines for engagement which serve as a cornerstone for fostering collaborative partnerships that honour the invaluable insights and contributions of people with lived experience of diabetes. This is for, and anyone wanting to work with, people with diabetes including diabetes organisations, researchers, clinicians, conference organisers, industry and healthcare professionals.
N.1
REIMBURSEMENT
Recognition of that expertise, knowledge, and lived experiences requires reimbursement. Compensation for time, expertise, and any associated costs should be budgeted.
N.2 N.3
RECOGNITION REPRESENTATION
If the work involves research likely to be published, co-authorship should be offered. This will strengthen the publication. While advocates may chose to opt out of involvement in publication development, the opportunity for inclusion should be extended.
Recognising that diverse perspectives collectively contribute to a richer understanding, it's crucial to include multiple people with diabetes to enrich the strength and depth of your work. Representation must go beyond mere tokenism.

Conclusion
Engaging and involving people with diabetes leads to the creation of materials and events that are better received by the community. Such initiatives are shared widely, commended, and acknowledged as examples of meaningful and inclusive collaboration. Additionally, there is a higher likelihood that the language used aligns with the principles of the #LanguageMatters movement, recognised for its efforts to avoid diabetes stigma.
These guidelines get it right.
Something that can only happen with community involvement!

Disclosure

I was an invited speaker at ATTD 2024 where I presented on the T1D Index in my capacity as Director Community Engagement and Communications in the Global Access Team at JDRF International. I also chaired a session on access to research. ATTD covered my registration costs. My travel and accommodation were covered by #dedoc° where I am Global Head of Advocacy. I chaired the #dedoc° symposium at the conference.

Hold on

March 5, 2024 in Advocacy, Awareness, Diabetes, Real life | 2 comments

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.

Photo of a friendship bracelet with the words Nothing About Us Without Us — Holding onto mottos like this one.

If you want…

February 26, 2024 in Awareness, Diabetes, Real life | 3 comments

The day after I was diagnosed with diabetes, I found myself in floods of tears, sitting in the stairwell of the Diabetes Victoria offices on Collins Street in Melbourne. I’d fled there from the NDSS shop that was housed on level three after suddenly feeling overwhelmed at the boxes and boxes of curious looking diabetes supplies that were about to be sent home with me. I was slumped against the wall, the emotion of the last twenty-four hours catching up with me. Someone came down the stairs and stopped. She crouched down and quietly said. ‘Hi. Are you okay?’

I wasn’t. Of course I wasn’t. ‘Can I sit here for a minute?’ she asked and somehow, through the tears, I nodded.

As it turned out, she was a diabetes educator working at Diabetes Victoria. And she also had type 1 diabetes. She spoke, I listened. And listened and listened. It was the first time I heard another person with diabetes share her experiences. She told me she too felt overwhelmed at times. And, she told me that right now – so new to it all – it feels so big, and that is perfectly understandable. She assured me that it would feel less big. She told me about bits of her life with diabetes and while she didn’t make it sound like bowls of cherries and puppy dogs, she took away tiny bit of the diagnosis fear that punches you right in the heart. Her stories made no sense at the time, but, as my own diabetes story grew, bit by bit, I understood her experiences.

I continue to search for stories today. I share some of mine – the things I feel comfortable sharing. And sometimes the things that aren’t all that comfortable.

I’m eternally grateful to that diabetes educator I met on 16 April, 1998. I told her repeatedly that her kind reassurance was the only brightness in those dark couple of days. I’m grateful to every other person who has so generously shared their lived experience. I never take it for granted – especially the reliving the trauma of difficult times.

And so tell your story. Only if you want.

Spike hype

February 20, 2024 in Diabetes, Food, Health, Social media, Wellbeing | 4 comments

The trend of people without diabetes obsessing over their glucose levels has become increasingly common (and increasingly annoying). Remember when some journo hack likened wearing a CGM to a polygraph test? And that time CGMs were hailed as a weight-loss tool? These days, spotting a Libre sensor on an upper arm no longer guarantees a diabetes in the wild encounter at the local farmers’ market. It could just be a bloke tracking his perfectly in range glucose levels after devouring a steak. With butter. For breakfast.

But just when we thought we’d reached peak glucose obsession, in steps Jessie Inchauspé, who smugly calls herself ‘the Glucose Goddess’, peddling her ‘Anti-Glucose Spike’ capsules with the zeal of a medieval alchemist. Her evangelical followers are behaving as if she’s just unearthed the holy grail of endocrinology, but in reality, it’s a flask of nostrum, a concoction containing a mishmash of herbs. And cinnamon. Because of course it does.

It’s not hard to realise that this is less miracle cure, and more nonsense without any semblance of scientific backing. Looking for peer-reviewed studies or clinical trials to understand the influencer-led hype? Sorry, there are none. What you will find is a masterclass in marketing to those in pursuit of eternal ‘wellness’.

But dig deeper and Inchauspé’s potion becomes more than just an ineffective supplement; it’s a symbol of the insidious ways in which diet culture infiltrates our perceptions of health and wellbeing. By suggesting that normal glucose fluctuations are something to fear and fix, Inchauspé is not just selling a product; she’s selling a problem. She is capitalising on the anxiety many feel about their eating habits, offering a solution to a non-existent issue for those without diabetes. And she is exploiting a fundamental misunderstanding about how the body works, turning the natural process of glucose regulation into something to be feared and needing a cure. Oh, and look! She has the cure! It’s a classic case of creating a problem to sell the solution – a solution that, in reality, does nothing but lighten wallets and propagate myths.

There’s a reason I get so furious when I see these sorts of scams. Inchauspé isn’t just misleading the wellness crowd. The ripple effect is that the misconceptions she’s peddling are harmful to people with diabetes.

People without diabetes, I urge you: Please stop misusing the term ‘spike’ in reference to your glucose levels when what you mean is a perfectly normal, healthy bodily responses to food. Your bodies handle these variations seamlessly. Seriously, it’s magic. Instead of throwing a pointless pill at it, marvel at the brilliance. I only wish that my body did that all on its own.

The word ‘spike’ has a very different, often challenging, reality for people like me. It represents the balancing act of wearing devices that talk to each other and respond based on an algorithm (still don’t know what that word means) while my brain goes into overdrive as I ~~attempt~~ fail to correctly count carbs, wonder if the walk to the café needs to be factored into how much insulin I need for my latte, consider my stress levels, contemplate if it’s likely that I could possibly be getting my period (unlikely, hello peri!), check the humidity level, and do the hokey pokey. That’s what it’s all about (to us)!

The problematic narrative that ‘spikes’ need to be ‘cured’ or ‘controlled’ with a monthly subscription of a herb cocktail trivialises the complexities of necessary glucose management. And it suggests that managing glucose levels is as simple as popping a pill, ignoring the intricate and often unpredictable nature of diabetes.

Even with the most advanced AID and exceptional tech brain, those of us with diabetes still experience fluctuations in our glucose graphs. When scammers like the Glucose Grinch sensationalise these fluctuations, it adds unnecessary alarm and misunderstanding about how diabetes works.

And it gives people buying into the hype a false sense of their own expertise in glucose management. Everyone becomes an authority on glucose. Everyone must fixate on their glucose levels. And so, everyone becomes an expert in the issue. Respectfully, that expertise is completely unfounded! You know who are experts in glucose management? Those of us who have to actually manage our own glucose every single day. You know, the people actually living with diabetes!

P.S. I seriously love the take that diabetes advocate from Netherlands, Eline, took when Anti-Glucose Spike was launched. She immediately took back the name ‘Glucose Goddess’, giving it to people who deserve it: people with diabetes! Find Eline on Instagram (@typisch_ein) and add your Glucose Goddess image using the template she’s provided in her GG highlight reel.

Screenshot of an Instagram Story that reads 'Here's what a real Glucose Goddess looks like'. There is an image of a CGM graph and a photo of Eline.

A long, dark shadow

February 17, 2024 in #SpareARose, Advocacy, Awareness, Community, Diabetes, DOC, Lived experience, Mental health, Peer support, Real life, Social media, Wellbeing | Tags: Diabetes, Health, Mental health, t1d, type-1-diabetes | 2 comments

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.

Sketch of two hands holding a piece of blue string that spells out INSULIN — Stunning design from Anita to support the Insulin Consensus Statement and petition launched this week.

Christmas detox

December 21, 2023 in Diabetes, Family, Food, Real life | 1 comment

Do yourself a favour this Christmas and holiday period and do a detox. And by that, I mean cleanse and purge anything that suggests people with diabetes need to change our behaviour or feel guilty for daring to enjoy sharing a meal with family and friends.

There are a lot of those stories out there and annoyingly, social media algorithms keep pushing ‘How to be a responsible person with diabetes at Christmas’ articles to me. I wouldn’t be worried if being responsible included making sure I ate enough of my mum’s divine zippoli or kept the Bellinis flowing, but instead, it seems to be all about restricting portions and sipping flavourless drinks (water), and making sure I don’t throw diabetes or weight management plans out the window. Apparently, Christmas is as good a time as any to reinforce diet culture, demand food restriction and push punitive portion policing on PWD. Such tidings of comfort and joy!

People with diabetes have every right to celebrate festive meal without being made to feel judged or that our choices are being scrutinised. Our diabetes; our rules including what and how much we eat (or don’t eat). If I want to eat panettone for breakfast every day for the next month, it’s no one else’s business. What I don’t want is suggestions such as: ‘Overcome the urge for a candy cane, by brushing your teeth with peppermint toothpaste. Twice!’. Or ‘101 Ways to Enjoy Ice Chips: The Ultimate Low-Carb Snack’. Or ‘Chew on a cinnamon stick. It’s all the flavour of a spiced cookie without the enjoyment!’ Good tidings…unless you have diabetes.

Another theme that I see is the patronising reassurance that it’s okay for people with diabetes to ‘overindulge’. Cloaking assurances in passive aggressive pats on the head about how we’re allowed a ‘day off’ is unhelpful and perpetuates guilt. How about instead we accept and recognise that people (ALL people!) may eat more when celebrations are centred around food, and normalise it rather than make us feel bad for doing what everyone else is doing?

If we must be forced to read articles about surviving the silly season, it would be great if there was some merriment in there. It is possible! I did it here. And also in the article I’m sharing below that I wrote for Circle Magazine a few years back. Just some authentic musings about real life with diabetes, embracing the season with comfort and joy.

Christmas Giving

Insulin for Life is once again running their Secret Santa campaign. All donations go to support the charities efforts in supporting people with diabetes in under-resourced counties. If you’re able to donate, please do so here.

Silenced voices speak volumes

December 19, 2023 in Advocacy, Community, Engagement, Lived experience | 3 comments

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.

A BIG birthday and request

December 1, 2023 in #SpareARose, Advocacy, Community, Diabetes, Real life | Leave a comment

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.

D-Coded – diabetes research democratised

November 3, 2023 in Community, Diabetes, Engagement, Research | 1 comment

In a month where there is A LOT of great stuff happening in the diabetes world, stop for a minute and get to know D-Coded, a brilliant new resource which helps to break down diabetes research in an accessible, informative, and authentic manner. It simplifies complex research studies and contextualises information without losing any of the insights and provides people with diabetes a starting point to better understand research, and work out how to delve deeper if we want.

One of the challenges of communicating research is that it can be a lot of detail using specialised language and complex stats and data interpretation. There may be an assumed knowledge that people simply may not have. There are acronyms, jargon, abstract concepts and the details can be lengthy and overly detailed. And that’s if we can see it! Often research papers are behind a paywall, so we can’t event see it in the first place.

Diabetes research is the reason that we are all alive today and it gives us hope for the future. At any one time, the research agenda is advancing to find ways to prevent, cure and treat all types of diabetes in ways that give me so much hope. And so, it makes sense that we should have access to it in a way to keep us engaged and interested and wanting to know more.

One of the tactics I’ve employed over the years is to ask researchers to break down their research into a tweet (280 characters or fewer), or as an elevator pitch. Most find it impossible to do. There is a language to research that can be complex, confusing, and complicated – just as there is a language to lived experience that confounds others. (Don’t believe me? Throw HbA1c, #YDMV, CGM, DIYAPS etc. around and see how people outside our community follow what we’re saying!) D-Coded does that for researchers. Everyone wins here!

It comes as no surprise that this came from the team at Diabesties. Led and powered by Jazz Sethi and involving community, it’s a project that once again shows how lived experience innovation drives change, this time by levelling the knowledge playing field.

Check it out and share as widely as you can.

DISCLOSURE

I am a Lived Experience Advisor on D-Coded. I don’t receive any payment for my involvement and am honoured to have been invited to be part of this project.

Celebrate WDD by helping #EndDiabetesStigma

November 2, 2023 in Advocacy, Awareness, Community, Diabetes, Events, Lived experience, Peer support, Stigma, World Diabetes Day | Leave a comment

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!

Register right here, right now!