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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.
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.
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!
It’s RUOK? day and while I am ready to jump on any worthwhile bandwagon, this one, today, seems especially important. A (non-diabetes) community of which I am on the periphery is grieving today after the death of a much-loved friend and colleague. I’ve been reading beautiful tributes to this person and messages of love and support to their family. I can’t begin to grasp what their loved ones are going through today.
RUOK? is more than a single day. It’s a movement that emphasises the power of human and social connection and having conversations about difficult things. If you’ve not looked at the website, there is advice about building the capacity of support networks (the very foundations of diabetes peer support groups for decades now) and developing skills to have meaningful discussions with someone who might be struggling.
It’s applicable to everyone, including those who may appear to not necessarily need it. Undeniably, it’s very relevant to diabetes. (This article outlines the increased risk of suicide in people with diabetes.)
Diabetes and mental health may be a topic on the agenda at most conferences and we’ve certainly seen an uptick in mental health and diabetes research over the last decade. But the strides that have been made are not enough. The pathway to genuine support and treatment for people with diabetes remains elusive. Simply telling people to seek help falls short when the help they need is not available.
Our peer networks go a long way to offering support, empathy, and love, but we’re not equipped to handle complex mental health issues. While we can assure people that they are not alone and perhaps offer suggestions for where they may find help, this does not go far enough in addressing mental health care, especially in critical situations. Accessing mental health professionals that have knowledge and training to support people with diabetes is what is needed. And it needs to be easily accessible. Easily affordable. Easily available. Right now, that’s not the case.
On RUOK? Day implores us to tap into our social circles and genuinely check in. (Do it, please; just do it). But there is a braider landscape of mental health in the diabetes landscape that needs real transformation. And while it seems unreasonable to add extra burden to those of us living with diabetes – after all, we are already expected to do so much of the physical, emotional, social, and political labour just to get by – community action drives change so often. We have had successful and coordinated community efforts to increase technology funding and access. Is our next frontier turning our attention to increasing funding and access to mental health care for people with diabetes? I know that some diabetes organisations have this in their sights, but without people with diabetes making noise, the campaign is only half-baked. Our voices amplify the urgency of the issue.
Today is just one day, but if RUOK? Day is what provides the gentle nudge to initiate these conversations, it’s a step forward. The tapestry of personal narratives, community connections and shared experiences form the basis of peer support. But not everyone has a safe space where they can share or the people to share with. Sometimes we need to reach out, extend a hand and signal we’re ready to listen. Keep reaching out. Today. And tomorrow. Every time you can.
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?
A few weeks ago, I saw a post on LinkedIn from Nick Dawson. Nick was around Twitter health communities a lot when I first joined and it was great to read his post and take a wander down Twitter’s memory lane.
The feeling of nostalgia was strong. I don’t remember joining Twitter, but I do remember when I started actually using it to connect with others with diabetes from around the globe and how my diabetes world suddenly seemed infinitely bigger. No longer was I constrained to only people in my own networks, or even my own country. I was a global citizen in the diabetes online world. And it felt great.
Twitter became the cornerstone of a lot of my own advocacy and connections online. I never missed a weekly #DSMA tweet chat, expertly moderated by Cherise Shockley. The rapid fire hour of diabetes power often included hundreds of people. Dana Lewis’ #HCSM weekly chats brought together from different health communities, opening my eyes not only to different healthcare struggles, but also to solutions that helped me with my own diabetes. I used Twitter to find people who were doing incredible things that elevated the voice of people with diabetes. It was on Twitter that I followed along with the first Roche blogger summit that brought together US social media pioneers. I used those sorts of events to shape the Australian Social Media Summit that was held at the end of 2012, coordinated by Diabetes Victoria, bringing together Australian diabetes social media folk and Kerri Sparling from the US.
I was part of the team that started the weekly #OzDOC tweet chats in July 2012, working with Cherise to help get things started close to home. Around the same time, the first #GBGoc tweet chat happened and the first #dedoc° chat, #FRDoc and #ItDOC followed soon after. Back then, those chats were brilliant at highlighting local issues, but by and large, they were indeed global.
Twitter was the tool I used to take notes at conferences, live tweeting sessions to share with those not in the room, and then pulling the information together in briefing documents at works, and writing articles here and on other platforms. And Twitter was the channel where remarkable whole community events happened. Remember Kelly Kunik’s #IWishPeopleKnewThatDiabetes and those #DayOfDiabetes discussions? Or the groundbreaking and overwhelming community event that was #Simonpalooza? It was peer support on demand. There was no need to feel alone with your diabetes if you were on Twitter!
And then, I don’t know when, Twitter changed. Or I changed. Or the community changed. It became harder to find the people who had shone so brightly and made Twitter a place of support and community. I stuck close to old friends who never advertised the Twitter following count, because who cared? I learnt the difference between an advocate and an influencer. And I started to steer completely clear of parts of the community which was so alien to what it had been like when I first joined. #DSMA chats became less frequent because Twitter chats became kind of old hat. #OzDOC chats completely stopped because there hadn’t been a sustainability plan in place and there really wasn’t anyone to take over. Perhaps this was a reflection of how the community wanted to engage and what they…what we…wanted.
For me, most of the day-to-day reaching out I used Twitter for moved to being via private channels. And that worked fine and became the same lifeline that the public space Twitter had once been.
There have absolutely been some bangers recently that have made me remember how great Twitter can be. The weekly #DiabetesChat, using Spaces, launched a new community that, although based in the UK, was very much global. Tom and the organisers went out of their way to include people from other places around the world to be interviewed and lead discussions. I loved it straight away for the beautiful open and welcome feeling that was there and embraced it. #dedoc° isn’t really a Twitter based organisation, but the #dedoc° voices use it brilliantly, and diabetes conference are so visible because of their prolific sharing.
In the last few days, a new Twitter-like app called Threads has been launched and I tentatively signed up and had a nosy look around. It felt like Twitter in 2012. Friendly. Fun. Open. I’ve found Threads friends (thriends?) who I’ve not seen around the Twitter traps for years and have re-engaged. I’ve managed to steer clear from the parts of diabetes Twitter that I’ve actively avoided over recent years.
It’s not perfect. There needs to be an option for people to add ALT text to photos, because that’s not there yet. Apparently it is coming. (But, you know, accessibility should have been a first level consideration, not an after thought…) A desktop version would be useful – it’s annoying only having the option to type on a phone keypad. The lack of hashtags is annoying. (Just today, I went back and read the tweets from that first Australian social media summit by searching the hashtag. What a treasure trove!) Again, this is said to be on the cards. As is the capability to see only threads from people you’re following rather than the mishmash right now. Having said that, sprinkled in amongst the predominantly diabetes focused threads I’ve been seeing, I’m not too disappointed with the cat pics, recipes and book recommendations that I’m seeing a lot of. Also pleasing is that I’ve managed to avoid so much as a hint of the crappy, manipulative, misogynist side of the diabetes world that clouded my Twitter experience for a while before I worked out how to block it out completely.
Is this the future of Twitter? Over here on this new app? Threads feels like the nostalgia Nick wrote about. It really does feel like the ghost of Twitter past and I like it a whole lot more than the ghouls of Twitter present. Come and visit if you’re not there already. I’m @RenzaS and you’ll see me sharing diabetes stuff, pet photos, books. And asking people about their diabetes experiences to help me make sense of my own. I hope to see you there!
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!
Imagine a community where people come together to make things happen. You don’t have to look far, really. Just look at the diabetes community!
Here’s something new from some folks (Jazz Sethi, me and Partha Kar) who are desperately trying to reshape the way diabetes is spoken about, and how fortunate I feel to have been involved in this project!
The thinking behind these particular language resources is to truly centre the person with diabetes when thinking about communication about the condition. In this series, we’ve highlighted three groups where we know (because these are the discussions we see in the diabetes community) language can sometimes be stigmatising and judgemental. This isn’t a finger-pointing exercise. Rather it’s an opportunity to highlight how to make sure that the words, images, body language – all communication – doesn’t impact negatively on people with diabetes.
A massive thanks to Jazz and Partha. Working together, and with the community, to create and get these out there has been a joy. (As was sneaking into the ATTD Exhibition Hall before opening time so we could get a coffee and find a comfortable seat to work before the crowds made their way in!) And a super extra special nod to Jazz who pulled together the design and made our words look so bright pretty! And a super, super, super special thanks to Jazz for designing my new logo which is getting its first run on the back of these guides.
You can access these and share directly from the Language Matters Diabetes website. These don’t belong to anyone other than the diabetes community, so please reach out if you would like to provide any commentary or be involved in future efforts. There’s always more to do!
I live right near one of the busiest streets in inner Melbourne and Fridays are extra busy. This morning, I was walking quickly to grab a coffee, a mental checklist working through my mind of the things I needed to get done for work for the day.
I was stopped at a light, waiting for green so I could cross. ‘Meeting in 45 mins to discuss the next project; review proposal that was sent this morning; reply to email about Melbourne Uni presentation; send bio and headshot for program for conference in August; amend flights for San Diego trip, call…. Wait. Am I low?’
The unmistakable urgent low alarm of my Dex snapped me out of my to-do list, and I pulled my phone from my pocket. My Dex line was straight, my number in range. I shook my head thinking I must have dreamed the blaring alarm. As I was shoving my phone away, I saw a woman next to me rummaging through their bag. The next second, she crouched down and turned its contents onto the footpath.
‘Hey,’ I said quietly, knelt down so I was level with her. I handed over an unopened packet of Mentos. She looked at me, surprised. I smiled. And said, ‘I’ve done that very thing more times than I care to remember.’ I passed her a small purse and a couple of pieces of paper that escaped from the dumped bag debris. She thanked me and we stood up together. ‘Are you all okay?’ I asked. She nodded. ‘Yep, I’m okay. Thanks.’
The light changed and I set off, giving a little wave. ‘Wait,’ she called after me, breaking the Mentos packet in two and handing half to me. ‘Take this in case you need it?’ I shook my head. ‘You hold onto them; I’m nearly home. Hope the rest of your morning is hypo-free.’
I picked up my pace and turned down a paved laneway, and into a café. As I waited for my coffee, I thought about how that brief encounter was a snapshot of the invisible community of people with an invisible condition. Until, of course, it’s not. Community isn’t always apparent. It doesn’t have to be the coming together for face-to-face meetings, or long Twitter exchanges. Sometimes, it simply lies within fleeting moments of strength and vulnerability and solidarity that provide solace and remind us that there are others out there who truly get it.
Diabetogenic 