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Hey, do you remember a couple of weeks ago when it was International Women’s Day and women got a cupcake (probably baked by a woman) and a breakfast (probably organised by a woman) and then we all agreed that gender equality didn’t need to be spoken about for another year?
Look, I know I sound cynical. But that’s only because I am. Every year at Diabetogenic, I write a post celebrating the incredible women working in diabetes. Mostly I centre diabetes advocates who are generally donating their time – and emotional labour – to power advocacy efforts and make change. And if you look back at the history of the DOC, you will see that the majority of the work has been by women in the community. (Don’t @ me with your ‘But I’m a bloke and I’ve done this’ commentary. It’s not the time for #NotAllMen.)
This year, I started to write something, and then stopped, and started again. And then stopped. Anyone who is a frequent visitor to this site or follows any aspects of my personal advocacy knows that I celebrate the incredible work done by grassroots and community advocates (many/most of whom are women) throughout the year and I didn’t want to buy into the ‘It’s-IWD-here-are-the-womens-now-it’s-back-to-the-misogyny-we-usually-deal-with’ crap that seems to be the aftermath of each and every IWD.
So, I’m using today – this random day – to give a shout out to some of the great things going on that you may have seen, or you may have missed. These things are powered by women who, in most cases, are doing this as extra work on the side of their day jobs, and everything going on in their personal lives. But it’s undeniable that it’s this sort of stuff that is going on all the time, usually flying under the radar, but it’s making a difference to so many folks in the diabetes world.
And so…
There is some remarkable work out of India where the Blue Circle Foundation continues to make a mark in diabetes advocacy. On IWD, a team of women from the Foundation conducted an awareness program for 200 women inmates in Yerwada Jail in Pune, India. This is part of their ongoing Project Gaia which creates safe spaces for women with diabetes. Snehal Nandagawli is just one of the women involved in this work. You can hear more from her at this week’s #dedoc° #docday°.
From the UK, Mel Stephenson-Gray has been a brilliant force in the diabetes community for a number of years. She recently launched a fabulous new Insta page celebrating and empowering women with diabetes. It’s called Diabetes Women’s Health Club and the information she’s been sharing (accompanied by gorgeous graphics) is brilliant. I loved the profiles of some of women who were groundbreaking pioneers in diabetes research. Go give the page a follow now!
Dawn Adams hasn’t managed to convince me that she is only one person because the sheer volume of the work she is doing is immense and she’s bloody everywhere. Dawn continues to blaze trails in her research and writings about diabetes and menopause (follow @MenopauseMither on Twitter for great information and support), has been featured in a number of Diabetes UK publications, spoke at the recent #dedoc° symposium at ATTD, and continues to be a daily support and mentor to people across the global diabetes community. I’ve barely scratched the surface with this list. Someone please send Dawn a coffee and cinnamon bun so she can sit down for 30 seconds and recharge her batteries!
Another woman who is a human powerhouse and obviously works 23 hours a day (lazily, she sleeps for an hour) is Jazz Sethi whose work with the Diabesties Foundation continues to multiply exponentially. She’s also a brilliant speaker and gave an emotional talk at ATTD last month. Check out just some of what she is doing here (and stay tuned for something super exciting that we’ve been working on together!)
Also at the recent ATTD #dedoc° symposium, Hamidah Nabakka from the Sonia Nabeta Foundation captivated the packed-to-capacity room, sharing stories of children and young people living with diabetes in Africa. This was held on the first day of ATTD and for the rest of the week, I had people coming up to me and saying that it was their highlight of the whole conference.
I’m getting to this a little late because it was started last year, but Niki Breslin started a brilliant Insta page to build community called ‘My Type of Family’ for anyone with diabetes who is planning and trying to conceive, pregnant, recently had a baby and parenting. There’s lots of great information and encouragement for the community with this page and definitely worth a follow!
I was so excited to see some artwork by Miss Diabetes from New Zealand make it across the ditch Melbourne in an IWD street art exhibition. Her comic ‘Women and Diabetes’ was on show in our city’s iconic Hosier Lane! Miss Diabetes’ diabetes advocacy is super well-known in the community thanks to her tireless efforts supporting Insulin4All efforts and with work she’s done with the WHO diabetes team. You can see the artwork here.
Anita Sabidi in Indonesia continues to drive and build community with her advocacy work that shine very bright lights on issues such as emotional wellbeing and mental health, and women’s health. Anita is a regular speaker about these important topics, and also leads a number of community initiatives supporting women with diabetes in Indonesia. She’s also speaking at #docday° this week.
Dana Lewis never ceases to amaze. Last week she ran 100kms in a day, but unbelievably, it’s not her physical feats that make her name so well known in the diabetes world. It is, of course, her work in open source AID. Last month she gave two presentations at the Open Diabetes Closing Conference, and she has an upcoming session at the ADA Scientific Sessions in San Diego. On top of that, she continues to publish regularly and is a force for nothing but good!
Ashley Ng from Australia has been documenting life with two gorgeous little girls on her blog, opening up about some of the more difficult aspects of parenting while living with diabetes. I love Ash’s candidness and honesty and am always grateful for her ability to be so raw, but also hopeful. Read and subscribe to her blog here.
These women are just a few of the many who continue to make our community tick and flourish. There work is not only meaningful on 8 March: it’s making a difference every, single day. The very idea that women and their achievements get just one day of real celebration (albeit while battling the calls of ‘where’s International Men’s Day?’) is in equal parts frustrating and insulting. I celebrate the incredible work that women spearhead all the time because I know that alongside that work, they are dealing with patriarchal attitudes that make their successes all the more remarkable. That deserves far more than a cupcake!
Postscript
The UN theme for the day was DigitALL: Innovation and technology for gender equality, not the saccharine sweet ‘EmbraceEquity which means absolutely nothing and was created by some corporate machine that does nothing to advance equality in any way. So, if you spent IWD posting selfies of you hugging yourself, that’s great, but what did that really mean when it comes to advancing gender equality?
If you haven’t had a look at the website from the UN, it’s definitely worth it, even if it’s just to see the high-level details, one of which explains that online gender-based violence silences women and discourages their public participation. It may be odd to think this is a thing in the diabetes community when so much of what you see comes from women, but actually, it’s real. Harassment is a concern for many women, and I know of many women who have stopped sharing or locked down their accounts (permanently or temporarily), or deleted them completely, due to this harassment. I’m one of those women. This is something to be mindful of every day – not just a single day in March.
Four weeks. That’s about how long ago it was that the first murmurings of Fiasp being withdrawn from the PBS were heard in the Australian diabetes community.
It’s been a pretty wild ride in those four weeks, hasn’t it? I never should be surprised at the dedication and never-say-die attitude of diabetes communities, but what we saw from the Australian community was next level! And it went beyond that, with Aussie advocates rallying our friends from overseas (hello #dedoc° Voices!) to amplify our efforts here.
And today, news of a reprieve. Fiasp would be available on the PBS for another 6 months for anyone with a script dated prior to 1 April 2023. (That’s the catch – you need a script before that date, or you will have to pay the private prescription cost.)
This is a great result. It gives everyone with diabetes using Fiasp some breathing space to make plans for what happens if we need to change insulins.
There are a lot of beautiful things about grassroots advocacy. Firstly, it can be incredibly responsive. It takes just one person to share, and the community response is often instantaneous.
We saw that here, didn’t we. As soon as it was just a hint about what was going on with Fiasp, people with diabetes in Australia took to it. This was even before the Minister’s office was aware of what was happening! From a petition (amazing, Belinda!), blog posts and discussions in social media groups, to standing around conference exhibition halls (this is exactly what was going on at ATTD with Aussie advocates!) the momentum started and picked up speed.
It is undeniable that the best results happen when everyone works together, and as I said in my post about this issue a couple of weeks ago, …Community advocacy is often the starting point of rumblings that, combined with strong advocacy from diabetes organisations, leads to policy change.
This is a dazzling example of exactly that! A community of all stakeholders coming together, led by community. Doesn’t THAT make you feel all warm and fuzzy? And today, people with diabetes have celebrated in great ways – the people who should be centred in this win for their efforts. This was my tweet about that earlier today:
Some final thoughts
Celebrate the win and cheer with other community advocates. I’ve loved seeing the commentary in online community groups today! Our celebrations are so meaningful because it is our fridges that were going to be bare of Fiasp if this didn’t come through!!
I know it’s tempting to stockpile, but please don’t! There are 14,000 Australians using Fiasp and hopefully everyone who needs to get a script filled over the next six months will be able to do so effortlessly. Of course there is the human urge to make sure we don’t run out but remember that if you have a year’s supply in the fridge, that might mean someone can’t get their next week’s supply.
This isn’t done yet! Six months is AWESOME but keep the pressure up with the grassroots efforts that worked this time.
I’ve just returned from Berlin, where I attended the ATTD Conference for a week of super busy meetings, information gathering, collaborations and advocacy. At every turn, people with diabetes (many attending after being awarded a #dedoc° voices scholarship) were discussing how community advocacy is key to driving change. I heard about remarkable efforts from people across the globe who are genuinely improving the lives of people with diabetes in their part of the world. And when anyone had a question, or asked for advice, people were only too happy to offer and share.
Right now, if you’re in Australia and live with diabetes, especially type 1 diabetes, you may have heard the kerfuffle about Novo Nordisk’s Fiasp being withdrawn from the PBS after Novo Nordisk made the decision to withdraw Fiasp. The Government can’t compel them to keep it listed.
So what now? Well, now is the time to rally the troops. Already, grassroots advocacy efforts by people in the Australian diabetes community (and friends across the globe thanks to the #dedoc° network) are making a lot of noise. There’s a petition (with over 6,000 signatures) and there have been blog posts. Social media groups are lighting up with comments and questions. This is how a groundswell starts.
You can also get political by reaching out to your local MP. I know that many people think that this is a daunting task, or believe that nothing will come of it. I counter that suggestion by pointing to any significant change in diabetes access in Australia. I’ve been in these trenches for decades now and know the effectiveness of people power. Community advocacy is often the starting point of rumblings that, combined with strong advocacy from diabetes organisations, leads to policy change. I can’t tell you how many letters I wrote back in the early 2000s before insulin pump consumables were on the NDSS. (I thought that the PM and health minister were going to take out restraining orders after I wrote to them both a couple of times each week for three years!) At one point, back in around 2002, I was invited to a meeting with Julia Gillard (in opposition at the time) who asked to speak with a group of diabetes advocates (did we even use that word then?) who had been regularly writing about the cost of pump therapy.
I also think of the incredible community efforts that lead to the Carers’ Allowance being changed back in 2010 so that the parents and carers of children continued to receive payments until their child was 16 years old, rather than being cut off when their child turned ten. Or the numerous letters I wrote, along with thousands of other people, to have CGM added to the Scheme. There have been other issues too – diabetes seems to mean one after another that needs attention.
Right now, the issue is Fiasp and you may be thinking about sending an email, but wondering where to start. Start with your story. Because only you can do that.
You can tell your story and write whatever you feel comfortable – your diabetes may vary and the way you advocate will too. I have some ideas I’m going to share below and I think they are worth considering when you are writing to your local MP. My philosophy is always to keep things short and sweet. I bring the heart with my story and add limited data to win over minds. Hearts and minds remains a central basis to my advocacy ideas. So, if you’re wondering where to start, here are some ideas that may help:
- They don’t know diabetes and don’t know details, so start with the basics and keep it to the point: I am writing about an issue affecting me as a person with diabetes and that issue is the withdrawal of Fiasp from the PBS. Fiasp is the only ultra-rapid insulin available in Australia and there is no comparable and easy swap to be made.
- Be clear about the issue: Fiasp is being withdrawn from the PBS. While it may be available on a private prescription this will make it too expensive for many people with diabetes, meaning a management option is being removed.
- Explain how that impacts you: As a person living with type 1 diabetes, I am required to take insulin every day. Fiasp is the insulin that works best for me and if I am no longer able to afford to use it due to it being removed from the PBS, my diabetes management will be negatively impacted.
- Be clear about your ask: I am asking for you to advise what the Government is doing to address this matter, and how it is working with Novo Nordisk to resolve the concerns of many people with diabetes who are worried we will no longer be able to afford the best treatment option for our diabetes.
Don’t ever believe that you are not going to be part of the movement that makes change. Just a minute in the Australian diabetes community right now is enough to see how a movement has already started. It’s organised and collaborative and the noise is already beyond a rumble. And you can add your voice.
Disclosure
I have worked in diabetes organisation for the last twenty-one years. Recently I joined the Global Advocacy Team at JDRF International as Director of Community Engagement and Communications and until earlier this year I was Head of Community and International Affairs at Diabetes Australia. My words on this blog are always my own and independent of my work and the organisations where I am working. My individual local and global advocacy efforts are in addition to my ‘day job’. I am also Global Head of Advocacy for ##dedoc°°.
Like clockwork, the beginning of February heralded a sea of red in every retail store, with cutesy cupid motives and love hearts adorning shop windows. Valentine’s Day was the next big merchandising opportunity and, friends, it’s time to buy up.
At the same time, the diabetes community also starts to be sprinkled with red – this time red roses. Because once again, it’s time for Spare a Rose, Save a Life. It’s the complete opposite of consumer culture. And it’s something that is very close to my heart.
This year marks ten years since Spare a Rose was first launched by a group of diabetes advocates from the US. The story has been told many times but it’s worth repeating, because it says a lot about this community. These advocates wanted to do something that supported others living with diabetes, specifically those in under-resourced counties. And so, Spare a Rose, Save a Child (now Spare a Rose, Save a Life) was created, with a vision to bring together the diabetes community, uniting in the collaborative goal of supporting those who need it.
The simple equation of ‘sparing’ one rose and donating the $5 saving to a diabetes charity was tangible. That face dollars provides insulin for a month. That’s how it has worked for ten years now. Close to one million dollars has been raised in that time, which is truly remarkable when you think about it. It’s people in the community reaching into our pockets to help make a change.
This year, donations are once again going directly to Insulin for Life, a charity that continues to support people with diabetes in countries where there is most need. Insulin for Life has been running for many years and their work is significant. Last year, as war broke out in Ukraine, the charity was able to rally their networks within days, getting critical diabetes supplies where they were most needed. That support continues, and a big part of that is due to the generosity of the diabetes community getting behind Spare a Rose for Ukraine.
As soon as the war started, the diabetes community were desperately looking at how to help and almost immediately, people dug deep. With $400,000 raised in months, so many in the community showed just how committed we are to focusing on others. That’s the diabetes community I know and love!
And so, this year – the tenth anniversary of Spare a Rose – we’re asking again for people to dig deep and help if they can. Leave egos at the door and do the simple thing of supporting community efforts by sharing links, encouraging others to learn about Spare a Rose and, where possible, donate. The only people who benefit from this campaign are people with diabetes who need it. By the community, for the community. Truly the best way to celebrate Valentine’s Day.
Here’s your Spare a Rose, Save a Life refresher for how it works. It’s super easy, and if you click on the image, it will take you directly to the donation page. (Donations are made directly to Insulin for Life.)
Postscript and disclaimer
I have been a community volunteer for the Spare a Rose campaign for a number of years, involved in promotion and communications. I’ve taken a step back this year (for a bucketload of reasons, including this), but am no less involved behind the scenes. I have just started a new job and much of the focus is supporting people with diabetes in low to middle income countries which means I’ll be supporting efforts of many different diabetes charities, including Insulin for Life and Life for a Child (previous charity partner of Spare a Rose), A4D, CDIC and others, as well as the brilliant community groups lead by advocates on the ground.
Manhattan’s East 41st Street is Library Way. Patience and Fortitude, the grand lions that stand guard outside the New York Public Library gaze down the street, keeping an eye on people hurrying by, and those who stop to admire the beautiful and imposing building.
Library Way is paved with bronze plaques engraved with literary quotes. I’ve walked the street between 5th and Park avenues a number of times, just to read the inscriptions.
The other day, as I hurried home to our apartment, this plaque caught my eye:
I stopped, made sure I wasn’t blocking any one’s way (lest I attract the wrath of Fran Lebowitz who is living rent free in my mind after I watched ‘Pretend it’s a City’), and I snapped a quick photo with my phone.
‘Isn’t that true,’ I muttered under my breath as I picked up speed and walked at the only pace I’ve come to accept in this gorgeous city – ultra fast.
This blog has always been about stories. Mostly mine, sometimes mine intersected with others. My advocacy life is about sharing stories and encouraging others to understand the power and value of those stories. It’s stories we connect with because we connect with the people behind them.
My time in New York is wrapping up and I’ll be back in Melbourne soon. I’ll be home, starting a new job and I’m so excited. And part of the reason for that excitement is that I will still be working with people with diabetes and their stories.
In the world of advocacy – in my advocacy life – lived experience is everything. I can’t wait to hear more stories, meet more people and learn more. And keep centring lived experience stories. Because, after all, that’s what the universe – and the diabetes world – is truly made of. Just like the plaque says.
It’s World Mental Health Day and that seems as a good as any a day to speak about diabetes and mental health. Actually, every day is a good day for that, but with every health organisation’s social media manager’s attention turned to today’s health promotion day, I’m jumping on that bandwagon and adding this post to the myriad on Diabetogenic that address the very significant issue of diabetes and mental health.
I don’t think it’s fair to say that we don’t speak about diabetes and mental health these days. We do. As is so often the case, the conversations started in the community, led by people with diabetes and then were slowly, but surely picked up by other stakeholders. Many health professionals are tuned into mental healthcare being part of diabetes care. And in recent years, diabetes organisations have followed the lead of the community by running public health campaigns aimed at raising awareness of diabetes and mental health. Thanks to peer-reviewed research, we have evidence to show that diabetes impacts mental health and that mental health impacts diabetes.
But even if we say confidently say that diabetes mental health is on the agenda, there is still good reason to believe that more light be shed on the topic, and more attention be given to it. And to really advocate for mental health care to be seen as part and parcel of diabetes care. I really do believe that would make a huge difference.
When we talk mental health in diabetes, there’s a lot to consider. Of course, there are the diabetes-specific things like diabetes burnout and diabetes distress. Plus, eating disorders can take on a particularly diabetes-focus with conditions such as diabulimia (which really, really needs to be listed in the Diagnostic and Statistical Manual of Mental Disorders – it’s such a difficult, under-researched, misunderstood, yet very present reality for so many people living with diabetes).
But there are also ‘every day’ mental health conditions that are increased when someone lives with diabetes, such as depression and anxiety. Just how much of that is linked to diabetes?
And for those of us who dabble in the advocacy world, there is advocacy-related burnout to contend with too and that can and does start to impact our own diabetes management and mental health.
I couldn’t even try to estimate the number of times I’ve given talks about diabetes and mental health from a lived experience perspective. But I am always happy to be asked, and always willing to talk about it, even if it means being quite vulnerable and exposed when I do so.
I remember when my work in diabetes organisations started to focus more on mental health, and I also remember when those discussions were accompanied by a change in narrative. Suddenly, a lot of what we spoke about – from diabetes-related complications to risk reduction – came with a side serve of mental health commentary. It helped to show the undeniable link between the two. And the community responded to that favourably.
Diabetes has never just been about glucose levels, or carbohydrates. And there are healthcare professionals and researchers and organisation leaders that understand that – probably because they have spent time really listening to people with diabetes, rather than just churning out the old tropes about the ticking time bomb of diabetes. Actually, those tropes have probably contributed to a lot of diabetes-related distress.
Starting conversations about diabetes and mental health can be difficult. I like to think that all HCPs these days are aware of the intersection between diabetes care and mental health care, but sadly, I don’t think that is necessarily the case. If the stories I frequently see on social media are anything to go by, there is still a way to go when it comes to having frank, open, honest discussions that recognise that the mental health of people with diabetes needs attention.
These days, I know that my mental health is really not that great. While I know that may seem alarming, I actually see it as progress. Being able to identify that I am feeling this way means I can do something about it. In years gone by, I had no awareness about my mental state. I didn’t know what to do about it.
When I talk about how my mental health is faring – especially when feeling as I do now – there is often surprise. I am not backwards in coming forwards and I know that many people see me as confident, assertive, and self-assured. And I am that way. I’m also pretty bubbly and positive about life in general. But with it comes some dark times and dark thoughts and dark days that are really not especially easy to manage.
I don’t know about others, but when things are dark, everything seems bigger and scarier. I had a low the other night that hit below 2.0mmol/l, and ordinarily I’d deal with it and move on. But during the hypo and since then I’ve not been able to stop thinking about it and worrying about it. It never pays to play ‘what if’ in diabetes, and yet most of my thoughts when remembering the other night have started that way. The constant crap that I’ve been dealing with in the advocacy space for far too long now feels unbearable, and seems so, so nasty that I feel a wave of anxiety just being online. The burden of simply doing diabetes feels massive. The other day, I cried when my insulin pump demanded a battery change. And I can’t shake this overwhelming feeling that I have no idea what I am doing with my own diabetes management and am so anxious about complications, even though there is no good reason for it. These are the dark feelings. The reason sleep gets disturbed. The reason that my heart beats faster.
If I could wave a wand and make one thing come true this World Mental Health Day, it would be that everyone with diabetes has access to mental health care as part of routine diabetes care. And if I could wave that wand for a second time, I’d want my own mental health to build back up and become a little more robust than it is right now. That would be really, really great.
I recently was invited to run a workshop for health advocates (not just diabetes) who are affiliated with health and community organisations either as employees or volunteers. I was asked to primarily focus on safety in advocacy communities – both online and in person. All participants were women. This was interesting to me because the workshop was open to anyone who was a health advocate – not just women. I could see why, after a few short minutes in, it was women who were keen to come together for this topic and talk about it in a safe space, with other women.
I was delighted to be involved for a couple of reasons: 1. It’s important and 2. I know that when I run a workshop properly, I walk away learning a lot. And this was a topic I wanted to learn about. I set about developing a very vague program that would leave a lot of time for experience sharing and co-developing ideas that could be used by everyone in the room. I had a few discussion starters and things that I think have worked for me, so they formed the basis of the workshop, but most of the suggestions came from the day and with permission, I’m sharing some of the ideas here.
Before I do that, though, I want to highlight the overarching message was that health communities and groups are really important and really valuable. I know I frequently talk about not needing to love everyone in the diabetes community, and how critical it is to find the people you want to be around, who are supportive, who build you up, who you build up and who make you feel safe. That squad becomes sacred. Everyone else spoke of the same thing. One woman mentioned that it had taken her years to find the right people in her health community before truly understanding how peer support can be so beneficial. Many mentioned that it took time to work out exactly what they were looking for – was it friendship, solidarity, advocacy mates, opportunities to grow professionally? There are as many reasons to ‘do’ peer support as peer support models!
But even knowing that, it came as no surprise that every single one of the dozen or so women participating in the workshop had examples of where they had felt unsafe, vulnerable, targeted, or exposed in their own health communities. As stories were shared, there were frequent looks of recognition and heads nodding. Many said it was the first time they had ever spoken about these experiences. And others took time to warm up, asking several times if anyone would know what they had said – worried that they may be identified. This reminded me a little of the Ascensia Women’s Diabetes Social Media Summit I facilitated last year. I’d probably done close to a dozen of those before and each one involved a lot of social media outreach while the event was taking place. But this event was different. This one, was not quite as open. As facilitator, it’s my job to read a room, and the reading I got was that there were a group of women who wanted to share in private. And so, we did. As happened again at this recent workshop.
None of the ideas I’m sharing will identify anyone, and this post has been reviewed by the people who attended. Safety of the women is my primary concern. So, here are some ideas that may or may not be of use to folks out there:
- You are not alone. Feeling unsafe in a community group can feel isolating, especially if there are cliques and groups that seem to form alliances. But there will be others you can turn to – often outside the group. I know I have turned to people outside the diabetes world at times to learn about how they have managed certain circumstances. It’s fascinating just how transferable things can be and how universal others are!
- There are reasons that functions such as block and mute are available on all social media platforms. But go one further. By blocking certain accounts, you may still see people you would prefer to distance yourself from. Mute their name, their account handle and, if they are associated with any specific words, terms or hashtags, mute those too. (So, want to not see my stuff? Block #LanguageMatters and mentions of coffee, stripes, bookstores, baking and red lipstick.)
- Keep records. Even of things that seem irrelevant. I have an online folder where I collate anything that has ever made me feel unsafe or helpless. It’s shared with others, so they know what’s going on.
- Talk to your workplace or associated organisation. This was one of the points that I wanted to raise. As all participants were either employed by, or volunteers for, health organisations, they have access to several services to support them if they feel unsafe. Perhaps they can use the organisation’s EAP which can be a terrifically helpful resource. It’s also important that those records you keep are seen elsewhere and there is a timeline of when things happen, and they are reported in real time. I do this a lot, mostly because it helps to talk to someone. Sometimes it’s done proactively. Other times, it’s after something happens. For example, the first time I spoke about DIYAPS and a slew of HCPs made formal complaints about me daring to talk about something so dangerously off label. Or the time a diabetes educator wrote to my employer after I called them out for tone policing me. There have been the multiple times people in the low carb community have become aggressive and threatening. Or just weird. There have been times when I’ve spoken with the CEO or other senior managers about situations and as well as being great sources of advice and comfort, it also means that they have an idea of how things started and are going. Oh, and it means there are few surprises!
- Walk away – for a bit or a lot. No one is obliged to continue to be involved in advocacy spaces or being part of a community if it is not working or if it is feeling unsafe.
- Go incognito. My name and face have always been associated with the advocacy work I do because that is what I have chosen. But there are times that I wish I’d come up with a nifty pseudonym (Blossom?) and a cute meerkat picture. I know that probably wouldn’t have been possible considering the number of quite public facing things I do means there’s limited anonymity. But there are lots of super effective advocates who are anonymous when doing any online work, and that is absolutely an option. It doesn’t mean that you don’t need to do any media or presentations. It just means not linking the public stuff to your socials. A couple of women at the workshop do that, and I somewhat embarrassingly squealed when I realised that they were amazing anonymous campaigners I’ve learnt so much from over the years!
- Learn the anatomy of gaslighting. It’s an artform, but it’s a predictable one. And expect to be gaslit if anyone ever takes objection to what you do – especially if the source of that objection is from a group that is used to not being challenged. Don’t believe me? I present exhibit a: #AllLivesMatter and exhibit b: #NotAllMen. The term gaslighting was coined to refer to misogynistic abuse and manipulation and it often presents that way these days. Learn how it works and you’ll be astonished at how frequently it is used to disempower women.
- Be prepared for your work to be challenged; to be told you’re not good enough; to be told that you are not worthy; to be told that your work is irrelevant and insignificant; to be criticised for your successes and to be diminished. The first time that happened to me, I was crushed. Now, it’s only mildly soul-destroying. (This isn’t to say that people can’t disagree with your work. Of course, they can, and they will. And that’s perfectly fine. It’s when your work is dismissed and disparaged, and you are personally targeted that it can be especially challenging.)
- Cry. This was my suggestion. I know it sounds ridiculous, but it really helps. I think it just comes from the idea of giving myself permission to not have to be confident all the time and to admit when I am feeling especially vulnerable. When there were weird emails coming to me about fundraising activities, I spent a lot of time bawling.
- Be public about how you are feeling and your experiences. This is a tough one, because it can add being vulnerable onto an already vulnerable situation. But if you are able to assess if it is going to help you get through it, go ahead.
- Ignore it. That sounds naïve considering some of the points I’ve shared, but we all agreed that in some instances, this does work and is the best way forward (albeit with keeping notes).
It is undeniably true that women face a lot of rubbish online and a lot of that is from men. Women who dare to be strident, vocal and stand up and are confident often get it more. We see it everywhere. But I will add that as a straight, white cis woman, I know that the lousy behaviour I’ve experienced is nothing compared to women of colour and people from the LGBTQIA+ community. I’m so grateful to people from those groups who are bravely sharing the horrible attacks they receive and absolutely feel that doing what I can to support them, listen to them and believe them is essential.
The women in the workshop are so committed in their advocacy efforts. It seems unfair that they have had periods where they’ve felt unsafe or targeted. I know how hard it is. Maybe the tips in this post might help others and if they do, great! And if you are reading this and prickling because you object to what you’re seeing, please remember that these experiences are from women who have had a tough time. That doesn’t in any way delegitimise what you have experienced. But I hope that everyone does understand and accept that in living with the patriarchy and with internalised misogyny pretty much part and parcel of everyday life, women do face an unfair share of rubbish, including in advocacy communities.
One of my favourite memes on social media is the response to people who tell the world they’re taking a break from or leaving social media groups or platforms: ‘This is not an airport. There is no need to announce departures.’ (Aussie airports at the moment are full of cancelled flights, so departure announcements seem to be few and far between, but I digress.)
And so, I didn’t announce that I was taking a little break from the online world. It wasn’t really planned. But it has coincided with a couple of weeks break from work and it’s been nice to step away a little and just be. Plus, it’s given me a lot of time to write and write and write and smash deadlines for some of the freelance work I never seem to have enough time to get done. (My submission emails inevitably start with ‘I’m so sorry for the delay in getting this to you…’) But here on Diabetogenic, I’m the editor, so delays are only holding me up and it would be weird to apologise to myself for repeatedly missing deadlines, especially when I don’t even have deadlines (mostly because I don’t set them because I know I’d never meet them) and there I go digressing again and is it any wonder I get nothing done?!
Having said that, I’ve received dozens of emails from people asking when to expect a new post, so to everyone who has messaged or wondered: ‘I’m so sorry for the delay in getting this to you…’.
But here I am back again, with a heap of great things I’ve seen recently and I want to share them here in a bit of an interweb jumble!
I’m writing
Yes, I know it’s weird to share my own writing on my own blog, but whatever! Plus,, there is nothing wrong with a bit of self-promotion. I’m back writing for diaTribe and absolutely delighted to have had these two pieces published recently.
This one is about how it’s important to tell stories of people with diabetes who choose to not run marathons or climb mountains in amongst stories of those who do.
And this one is about a new type 1 diabetes screening program for Australian children. I write about the reservations I had about having my daughter screened when she was little, but how things might be very different with research like this. The response to this article has been lovely and a lot of parents with diabetes have reached out to say that they have had similar concerns and feelings to those I articulate in the post.
Advocacy through art
I’m a huge fan of Jenna Cantamessa’s artwork, and this beautiful image and accompanying post is one of the reasons why! Click on the artwork to be taken to the TypeOneVibes Instagram account to read Jenna’s words.
Stripped Supply
I’m always happy to promote smart women doing smart things and so let me introduce you to Ashley from Stripped Safely. Here we are at the recent Australian Diabetes Congress.
When Ashley’s boyfriend was diagnosed with type 1 diabetes, she realised there was a gap in the market when it comes to mail ordering NDSS supplies. Remember the old days when we used to be able to easily place an order online and have our pump lines or BGL strips delivered straight to our front door? Well, Ashley is making that happen again. It’s a subscription service and is super easy to use. Details about how to use Stripped Supply here.
Gong
You bet I’m proud to share this! Diabetes Australia’s Heads Up on Diabetes campaign recently received an award from the Australian Patients Association. The campaign was recognised as the Best Patients’ Campaign and how wonderful that shining a spotlight on diabetes and mental in such a powerful way has been awarded.
I’ll just say that while it is truly amazing to be acknowledged in this way, the real measure for me of the success of a campaign is how the diabetes community responds and it was clear from year one of this three-year campaign that people with diabetes from across the world absolutely loved it, as evidenced by the number of times the campaign videos were shared online. Oh, and there’s something quite incredible about sitting in a conference room and seeing our work played back to us by someone from outside the organisation. Yeah – that’s happened a number of times!
The Human Trial
So much buzz in the diabetes world at the moment about the incredible documentary out of the US, The Human Trial. Until 9 September, you can stream the film for free by going to this link. You will be prompted to make a donation if you can. All funds raised go to diabetes research.
More about this documentary soon.
Advocacy through poetry 1
At the recent Australian Diabetes Congress, I had the honour and pleasure of chairing a session with an brilliant array of diabetes advocates from Australia and across the world. One of the speakers was Ash Byrne who began her presentation with an incredibly powerful poem and then went on to speak about the mental health burdens of diabetes. You can see Ash readying her poem, Invisible, at this Facebook link.
Advocacy through poetry 2
Aussie diabetes advocate and #dedoc° voice, Leon Tribe shared this poem on Twitter earlier this week which beautifully explains the power of language and communication between people with diabetes and our healthcare professionals. (You may need to click on the image to read the poem more easily.)
Stigma – diabetes and beyond
‘I have a new thing, and I didn’t want to talk about it. In part, because of stigma. Mostly, because of stigma.’
This is the start of a powerful post from Dana Lewis where she shares how the stigma that comes with diabetes has influenced how she feels about being diagnosed with another autoimmune disease. Read it here.
TEDx does diabetes advocacy
I’ve been a long-time fan of Grainne Flynn’s advocacy work and have shared her posts here before. Recently, she did a TED Talk about grassroots advocacy. It is all shades of brilliant and an absolute joy to watch. So… watch!
#dedoc° is busy!
There is a lot going on in the world of #dedoc°! Here’s just a taste of upcoming events that everyone can get involved in. Plus, the #dedoc° voices program will be kicking off again later this month at EASD with a cohort of new voices and alumni on the ground in Stockholm as well as following along virtually.
I’m so excited to be part of the #dedoc° symposium at EASD! Delivering a community led and focused symposium as part of the scientific program at a professional is a Big.Deal. We’re continuing to live and breathe #NothingAboutUsWithoutUs in the most impressive ways!
Disclosures
As always, I am thrilled to share things that I’ve found interesting, but disclosures are important. I’ve not been asked to share anything you see here, but figure if I find something interesting (or feel like doing same shameless self-promotion) you might too. I also figure that being transparent is important as is reminding you to consider my bias when sharing things.
- I am a paid contributor to diaTribe
- I am the Head of Communities & International Affairs at Diabetes Australia
- I am the Global Head of Advocacy at #dedoc°
Psst…forgotten something?
If you’re in the northern hemisphere right now, you’re possibly all caught up in the sunshine, splashing around at the beach or spending time off work just taking time out. If you’re from the southern hemisphere, you’re either smart and have taken a holiday to Europe because EVERYONE.IS.IN.EUROPE.RIGHT.NOW, or under fifteen quilts in front of a roaring fire, counting down the days until it gets warmer. Sadly, I’m in the latter group.
I get it. Things slip by either way.
But! You only have a few days left to make sure you don’t miss out on applying for a #dedoc° voices scholarship. Wherever you are, a scholarship means you have something to look forward to in a couple of months’ time and the absolute thrill of either virtually or in-person attending a global diabetes conference or two. That’s right – TWO! EASD (European diabetes conference) and ISPAD (paediatric diabetes conference) are the next international conferences on the diabetes conference calendar. Both will be hybrid, with the in-person locations being Stockholm and Abu Dhabi respectively.
We’re well over two years into the #dedoc° voices program now, and the awesome thing about it is that it’s not just about the few days of the conference where you get to learn from incredible researchers and clinicians, while waving the lived experience flag and being surrounded by others with diabetes. I mean, that is all pretty great. But being a #dedoc° voice goes way beyond that! Once you receive a scholarship you are part of a network of remarkable diabetes advocates from across the world, and this network is the most supportive, encouraging, brilliant group of people, always ready to help. Every single week, I see people reaching out for support and advice and the responses are swift and many. I’ve not seen a single example of anything other than support, and have watched advocates truly flourish as they have worked with others, developed mentoring relationships and been supported to do brilliant things.
Unless you’re part of the program, you wouldn’t know this. And here’s the deal: anyone can become part of it. The #dedoc° voices program is open to people from across the world and everyone is in with an equal chance. You just need to spend some time completing an application. It is a competitive process, and places are limited. The people who get accepted are the ones who have taken some time with their application and really been able to demonstrate just how they are going to #PayItForward to their diabetes community if successful. No one is a shoe in; having a high follower count on socials means nothing if your application is sub-par. We take people who are new to the diabetes advocacy space, and are looking for a hand carving out their space, as well as seasoned advocates who are keen to work with others and become part of a global network, outside their own country.
So, get on it! Click on the image below, fill in the form and join us! You get to work on your advocacy while giving back to the community, all while wearing the #NothingAboutUsWithoutUs badge. How amazing is that?!
More on #diabetogenic about the #dedoc° voices program:
#dedoc° voices helping people with diabetes get into professional conferences
How #dedoc° voices supported people with diabetes in Ukraine
More on why to apply to join the #dedoc voices program
Disclosure
I have been an advisor for a number of years, and am now working with them as Head of Advocacy.
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