ISPAD has led the way when it comes to including people with lived experience of diabetes at their annual meeting. It was the first conference to work with #dedoc° to have a voices scholarship program. The society has included people with diabetes on the organising committee for some time. ISPAD has awarded the ‘Hero Award’ which recognises the work done by people in the community. And the conference scientific program involves people with diabetes speaking and chairing sessions.

And so, it was interesting to hear someone ask at last week’s meeting in Montreal whether there should be a limit to the involvement and number of people with diabetes.

I wasn’t actually in that session, but I certainly heard about it from many others. People seem to expect me to have words to say about these sorts of questions. Turns out I do – and so do other people. And there was quite a bit of discussion – both at the conference, and in an online group after I shared the question with members. 

While the question may have been well intended, (I certainly don’t believe there was any malice in asking), it did make me bristle. The idea of limiting access to a diabetes conference to people with diabetes has never sat well with me. It reeks of gatekeeping. And it also sends the message that people with diabetes are ‘allowed’ at the discretion of others rather than having a right to attend.

I think that quantifying the number of any sort of participant is problematic, but I have always liked this pie chart drawn and tweeted by James Turner (@jamesturnereux, although he appears to no longer be on the cesspit site) from a Medicine X conference in 2017. I am pretty sure that I have already shared this somewhere in the #diabetogenic archives, because I think it’s great! What I like about this is that it recognises that everyone has an equal place to be there. That equilibrium does sit well with me!

I also like the comment from my friend, and researcher and fabulous diabetes advocate, Ashley Ng. We caught up today to discuss this issue, and she said ‘I don’t agree with a maximum, but I do think we need minimum representation by people with lived experience’.

But this isn’t just a matter of representation, and it’s not simple either. There is the broader issue of people with diabetes wearing more than one hat. Some may also be researchers, clinicians, involved in technology development, industry representatives and more. This certainly does point to the complexity of the ecosystem. When looking at the number of people with lived experience of diabetes, we draw the cohort from many different spaces. 

But this in itself adds to the intricacies of the situation. In fact, it is something that I have spoken and written about for decades (most recently here) and my position is very clear, albeit not especially popular with everyone. I believe that people with lived experience who wear no other hat in the healthcare space must be prioritised for positions centring lived experience at conferences, in panels, on advisory groups and anywhere people with diabetes are intended to be represented. Why? Because these are usually the ONLY way for us to get a seat at the table. Those wearing other hats may find themselves able to access other pathways via their employment or professional settings. 

This is why #dedoc° generally doesn’t offer scholarships to healthcare professionals and researchers. The voices program is for people with diabetes who otherwise would not be able to find a way to attend conferences and who don’t have other prospective funding opportunities. I am aware that HCPs and researchers have limited opportunities available to them, but there are funding streams and grants, and institutional supports that are simply not open to people with lived experience who do not have any professional affiliation. Of course, (and it shouldn’t need to be said, but I’ll say it anyway), I’m not minimising the experiences of those who bring both professional and personal perspectives. But there are so very few opportunities for people with diabetes who represent as community members only to find a seat at the table. Those seats should not only be reserved for us, but we should all work to protect them. 

It would be remiss of me to not point out that there are indeed unique challenges for people who straddle the professional and lived-experience divide. This article (I am a co-author) was written by people with lived experience of diabetes and wearers of other hats and addresses some of the issues faced by people in this situation. 

These discussions are always interesting, but they can be uncomfortable. And also frustrating. I would hope that we are far along the lived experience inclusion road to not have to justify the rights of people with diabetes to be part of conferences and other efforts. And rather than even suggesting gatekeeping, we should be looking at more ways to make access to these spaces easier, and focused on diversity of voices. Chelcie Rice says we should bring our own chair if there isn’t one already for us. I say, bring two or three and the people to fill them too. But honestly, we should be beyond that now, right? We should simply be able to walk into any space and take a seat. 

Disclosure

ISPAD invited me to speak at this year’s meeting and covered by accommodation costs. Travel was part of my role at Breakthrough T1D.