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The last time I was in Stockholm was seven years ago for the 2015 EASD Conference. This year, as I walked to the conference centre from the train, everything about the venue flooded back. ‘Here we go again,’ I thought. Except this time was different.

I wrote this about #EASD2015:

‘There is much mention of the ‘patient perspective’ and on Monday there was an entire symposium dedicated to it. Unfortunately, there wasn’t an actual ‘patient’ on the panel, which surely is weird...But despite the limited presence of PWD in the official programme, there are a lot of satellite events and activities taking place.’

One of those satellite activities was the first ever #docday°. It was in a musty, overheated, overcrowded back room of a co-working cafe, and it brought together a rabble of diabetes advocates from around the world who had somehow made their way to EASD. I think most of us were there with Roche or Johnson and Johnson for one of their blogger events.

But #docday° was different. This one was completely about and by people with diabetes, showcasing community and peer support. People shared their advocacy efforts and what they were doing in their own networks to support people with diabetes, and shared ideas about how others could do the same. Despite being all about diabetes, we were not welcome as a group at the biggest diabetes conference in Europe.

Fast forward seven years to this week, and the same spirit from the first #docday° event was visible. But this time, it was on stage as part of the scientific program at the conference. The #dedoc° Symposium was on the first day of EASD and it set a tone of inclusion and collaboration, making a very clear point that people with diabetes have a rightful place here, at professional conferences.

Adding to the #dedoc° symposium were the #dedoc° voices – diabetes advocates from across the world – participating fully in the conference. This is the largest scholarship program in the world for diabetes advocates and they made sure they were seen and heard! Everywhere! You only needed to walk the corridors of the conference to see the voices collaborating, not only with each other, but with health professionals, researchers and industry. Social media coverage of the EASD is dominated by the constant stream of ‘reporting back’. And almost evert single health professional I spoke with at the conference knew about #dedoc° and supported our very clear mission of #NothingAboutUsWithoutUs. How amazing is that?!

#dedoc° is all about inclusion. That’s why we can, hand on heart, say that we welcome advocates from around the world to become a #dedoc° voice. But it’s more than that. Our events are open to everyone, including our symposia at diabetes conferences. At EASD, our session was the only one that was live streamed to everyone and anyone via our socials channels. No one needed a costly registration to get inside the Stockholsmassan or another way in. Everyone could see Andrea Limbourg speak about some incredible work from advocates in Indonesia, France and Ireland, and Jeff Hitchcock explain how Children with Diabetes managed to keep supporting families of kids with diabetes throughout COVID, and Tom Dean share details of the brilliant #DiabetesChat and how he has embraced the idea of providing a truly welcoming platform for diabetes friends from around the world to gather on Twitter Spaces for a weekly chat. And Bastian Hauck tell the story of that overheated room for the first #docday° and how what happened on that afternoon planted a seed for a global movement of people with diabetes. #dedoc° provides a platform to elevate others. It’s a privilege to be part of it. 

If you missed the #dedoc° symposium at EASD, here it is!

Disclosure

My travel and accommodation were covered by #dedoc°, where I am employed as Head of Advocacy. Thanks to EASD for the press pass.

Diabetes comes with a side serve of guilt in so many ways. Glucose levels above target? Guilty that I’m contributing to developing diabetes-related complications. Need to stop to treat a hypo? Guilty that I’m not participating fully in work, or focusing on family and friend. Forking out for diabetes paraphernalia? Guilty that the family budget is going to diabetes rather than fun stuff like (more) doughnuts from the local Italian pasticceria. Eating (more) doughnuts from the local Italian Pasticceria? Guilty that I’m not eating the way most diabetes dietitians recommend. Depositing the pile of diabetes debris on the bedside table? Guilty that I’m the reason the world is going to hell in a handbasket because of all the waste. 

The other day, I did a show and tell of diabetes tech. I brought along all the things I use, and things I don’t use. I’d been asked to show and explain just how the tech I use works and what it all looks like, but I wanted to show that there were other options as well. The people I was speaking with had a general idea of what diabetes was all about but didn’t have the detail. So, while they understood what an insulin pump was, they didn’t really understand what it means when someone says, ‘I need to change my canula’.

I did a pump line change to show the process and all the components. I didn’t need to change my sensor, so I brought along a spare and a dummy kit that is used for demo purposes. I also had some disposable and reusable pens and pen tips, blood glucose strips and a meter, alcohol wipes and batteries for the devices that need them. 

At the end of my demonstration and discussion, someone looked at all the debris. ‘That’s a lot of waste, isn’t it?’ I nodded. ‘It really is. And I think about that all the time. I hear people with diabetes lamenting just how much there is.’

‘It seems that what you use produces more waste than if you were using the reusable pens and a meter you showed us. Wouldn’t it be better for the environment if you did that?’

Yes, friend. Yes, it would. But it wouldn’t be good for me, my mental health or my diabetes. I was reminded of when our little girl was new and a man at the supermarket saw frazzled new-mum Renza covered in baby vomit and probably wearing my PJs, juggling baby and a box of Huggies and asked why I insisted on using disposable nappies rather than cloth. ‘Disposable nappies take 100 years to break down.’ In my new-mum fog, I looked at him, wondering what on earth I’d done to deserve this unsolicited approach, and said ‘Yes, I know. But if I had to deal with cloth nappies it would take me 100 seconds to break down.’ I blabbered on about other ways that we are more environmentally responsible, and then scurried away, adding environmental guilt to mother guilt and diabetes guilt

Diabetes waste is horrendous. There’s a lot of it. And we should think about it. I love the work that Weronika Burkot and Type1EU led a few years ago. You can still find details of the Reduce Diabetes Technology Waste Campaign online. The project aimed to highlight the amount of diabetes tech waste one person with diabetes produces in 3 days, 1 week, 2 week and 1 month. It was startling to see the piles of trash accumulate. 

But it can’t be solely the responsibility of the of us living with condition to address the issue. It’s brilliant that we talk about it – and we should do that. The Type1EU campaign got a lot of people thinking and talking about it for the first time. And we absolutely can and should do what we can to minimise our waste. I make sure that everything possible is recycled; I stretch out canula changes to four days when I feel it’s safe to do so; I restart sensors three or four times; I refill pump cartridges, sometimes to the point of them getting sticky; I use spent pump lines to tie the rose bushes in the garden; I’m using a fifteen year old pump – the last time I bought a new one was in 2013. I do all these things to try to reduce waste. I do what I can. I last changed my lancet one 2018. And, as an advocate, I have sat around tables with device manufacturers and begged that they consider how they can be more sustainable in their approach to diabetes tech, asking them what can be reused? What can be easily recycled? What can be removed from current packaging?

But the reality is, we don’t get a choice in how products are packaged. We don’t get to choose what the devices look like or the excess packages that surround them. We don’t get a say in the requirements of regulators who place stringent demands on manufacturers to make sure products meet safety obligations. 

Laying into people with diabetes as needing to be more responsible without looking further upstream at just who is responsible for the product we pick up from the pharmacy, or have delivered to our door, seems unfair. 

I gently pointed out to the person who was (most likely unintentionally) piling on the guilt with his comment about how I was contributing to the despair that is the condition of our environment, that his comment really was unjust and misplaced. To suggest that someone with a crappy medical condition that requires so much effort and attention, abandons the technology and treatments that go towards making it just a tiny bit less crappy is not really addressing the root problem. It can’t all be about individual responsibility. There needs to be scrutiny on everyone along the supply chain, but the least scrutiny and blame should lie at the feet of those of us with diabetes. 

Image is from this resource. I wrote and oversaw the design and photography of the first edition of this booklet years ago when working at Diabetes Victoria.

Sometime last year, I presented a webinar about how to be a good diabetes ally. The webinar was for a startup that would be working closely with people with diabetes. Earlier this week, someone who attended the webinar sent me this neat graphic which captured the main points of my presentation. I know that there are lots of other things that could be added, (and during my talk I covered more than what made this list), but I think that this is, perhaps, a good starting point. I’m especially pleased my point about avoiding hypo simulators made the cut!!

When I think of the diabetes allies I’ve worked with over the last 21 years in the diabetes world, I realise that their main strength is that they made point number one the foundation of their work. I find myself being drawn to the activities of those who centre people with diabetes in meaningful, not token, ways. They are the people who happily step into the shadows so that people with diabetes can be in the spotlight.

A real diabetes ally works with us. They stand with us, not speak for us, because when anyone claims to ‘be the voice of diabetes’ they are simply silencing people with diabetes. We have voices, we have words – our own words – we don’t need others to speak for us. Hand us the microphone.

Being an ally is easy. It really is.

List in black writing on a pink background that says:
HOW TO BE A DIABETES ALLY
a non-exhaustive guide for people working in the diabetes world 
1. Centre people with diabetes 
2. Hand people with diabetes the microphone; 
3. Understand that being adjacent to diabetes isn't the same as living with it
4. If diabetes is the topic, make sure there are people in the room influencing outcomes 
5. You're not being person-centric if people with diabetes are not front & centre 
6. Don't cosplay diabetes 
(AKA: no hypo simulators!)
7. Believe people with diabetes when we say you are not acting in our best interests 
8. Don't excuse diabetes stigma when you see or hear it, and always call it out 
9. Share the words & work of people with diabetes, acknowledging our contributions
10. Recgonise the emotional labour that goes into sharing our lived experience 
11. Don't make us feel like a burden when acknowledging people who support us 
12. If people with diabetes aren't in the room, ask why not
Diabetogenic.blog

More? I’ve written before about how healthcare professionals can be allies to people with diabetes when they see and hear stigmatising comments from their colleagues. A lot of what was in that post is relevant here too.

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