When I first started working for a diabetes organisation, the first big project I oversaw was the development of a booklet providing information to young people living with type 1 diabetes. After approaching a few others out in the community working with and supporting this cohort, I was promptly reprimanded by one person who told me in no uncertain terms that I (and the organisation I was working for) should butt out, because this was not our space; it was this group’s area. I was somewhat astonished at the idea of ‘owning’ a segment of the diabetes community. How did that happen? Who decided that? I was a young person with type 1 diabetes at the time (obviously, this was years ago!), and I didn’t feel especially well-represented by any one group, and I certainly objected to the idea of someone deciding that their group spoke for me and my ilk.

The diabetes community is made up of many, many voices (some louder than others), and each person has different priorities for their own diabetes, and the broader issue of diabetes in general. We see that every day with different campaigns that are driven by people in the community. Some of the most visible are movements or campaigns that employ hashtags such as #Insulin4All, (although the insulin affordability discussion encompasses more than just this hashtag), #NothingAboutUsWithoutUs and #WeAreNotWaiting, and, as we are still in February, #SpareARose. (Not too late to donate, folks!)

Actually, #SpareARose is an excellent example of this. It may have been started by a few incredible advocates, but they never felt the need to identify themselves as the ones who led or created it. They encouraged anyone and everyone to be involved in any way they could – to donate, to share, to write about it, to make vlogs. It is owned by all and by no one at the same time!

At ATTD last week, Chris ‘The Grumpy Pumper’ Aldred and I took to the stage to do a presentation on #TalkAboutComplications, which incorporates the under-discussed issue of diabetes-related complications and its intersection with #LanguageMatters. Our talk was in a session that incorporated presentations focusing on peer support and diabetes online community and technology – all very much ‘user-led’ initiatives and movements.

These campaigns are not about everyone having the same idea and perspective. People approach different issues in different ways. One person’s peer support ideal is another person’s living nightmare! And #LanguageMatters remains a topic with myriad ideas and expectations for just how embedded it should be in the hearts and minds of our community and beyond.

But it is undeniable that no one really claims ownership of any of these movements. While Grumps may have tweeted that hashtag #TalkAboutComplications first, I know that he doesn’t feel that he ‘owns’ it, or discussions around it. Rather, he used it as a rallying cry to bring people together – to find a tribe, so to speak, and to connect people with diabetes searching for information and support about the realities of living with diabetes-related complications.

I (and a couple of others) have been accused of claiming ownership of #LanguageMatters because of our frequent posts, tweets and other commentary on the issue, but anyone who has aimed that accusation at me has either never heard me speak about the topic or read this blog. Whilst I may be extraordinarily proud that I work for the organisation that developed and launched the first position statement addressing this topic, and I have been invited to speak about our work a number of times, I very clearly point out the origin story of this movement, and that is very much a story from the diabetes community.

People with, or affected by, diabetes have been speaking about how words and language impact for a long time. Older online discussion boards frequently held debates about PWD/diabetic for as long as I have been diagnosed (and I’m sure, many years before that).  Parents of kids with diabetes shared how they felt judged and shamed by the words used by HCPs when their kids A1Cs were out of range, feelings echoed by adults with diabetes.

I remember one of the first articles I read in Conquest magazine (Diabetes Australia’s magazine back when I was diagnosed) was by Gordon Bunyan who eloquently wrote about how words matter. Gordon has become a good mate, and over the years I’ve turned to him regularly to talk about this issue. And I remember hearing how teenagers at camps instigated change when it came to the language used when talking about glucose levels, moving from using good and bad, to the more factual high and low. That was back before I was working for the organisation involved in those camps.

Diabetes Australia, in developing that position statement, wasn’t sticking a flag in the issue, claiming ownership – and nor have any of the people involved in its development. It was a response to something that mattered to people living with diabetes – people who told us repeatedly that the words spoken to and about them, the attitudes that those words conveyed and the feelings they had when different words were used had the ability to empower or harm.

Having organisations build programs, activities, resources and services around what people affected by diabetes are talking about unites the community. It also demonstrates a willingness to listen and acknowledge the value of lived experience. That was the thinking behind the development of DIYAPS and low carb position statements. Acknowledging PWDs’ right to choice of treatment truly does put us in the centre of the discussion.

I should say that I am not undermining that leadership that organisations and individuals show when taking on these issues. It does take people to run with the ideas and turn them into something – whether that be a position or guidance statement, or different service or resource. I admit to occasionally feeling a level of frustration that legitimacy of some of these important-to-the community issues only comes when they have been made ‘official’ by an organisation, but I also know that all stakeholders involved is important; that together we are stronger!

Last week we saw on show discussions that have their foundations very much in the community. They may have moved into the realm of HCPs and researchers, and the conference stage. But it is well worth remembering where – and why – they originated.

DIYAPS – started in the community and now on the program at ATTD!

DISCLOSURES

I was an invited speaker at #ATTD2020, and my registration was covered by the conference organising committee. My airfare and part of my accommodation to attend ATTD was covered by Lilly Diabetes so that I could participate in the DOCLab advisory group meeting which took place on Friday, Saturday and Sunday. Other accommodation was covered by DedocLabs (I am an advisor for the #dedoc° voices program) and Novo Nordisk (I am a member of DEEP). I have not been asked to write or speak about any of the activities I attended, or anything I have seen at the conference. 

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How sweet of you to mention me in your blog Renza. Made my year so far! Looking forward as always to seeing you & Ash on Thursday. Chrz Gordon

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Who owns an idea? hmm, I think it depends on who you talk too. 🙂 But we do know who does not own any of these ideas, Me of course.

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