Performing monkeys

If I may, a little advice: people with diabetes are not performing monkeys.

This shouldn’t be a surprise to anyone, and yet, apparently it still needs to be said.

I’ve seen several recent diabetes initiatives and events celebrated on social media, with organisation executives, politicians and other Very Important People front and centre. They are named, photographed and tagged. People with diabetes meanwhile, may get a passing mention in the accompanying text as a single amorphous mass known simply as ‘people with diabetes’ or ‘lived experience representatives’. Nameless and anonymous, they are reduced to props used to suggest that ‘engagement’ happened. But who were they? I assume they have names. What did they contribute? Were they anything more than window dressing so the organisers could tick the consultation box and say that of course they had engaged? This is despite the inevitable mention of people with diabetes being the central reason for the new initiative.

It’s the definition of performative. Performing monkeys.

How to do it right:

It’s not that hard actually.

Including people with diabetes at an announcement or event about diabetes is a no brainer. I think we’ve (almost) gotten to the stage where most people and organisations know that. But just having them there isn’t enough. And the disrespect that is shown to them when their contribution isn’t specifically acknowledged is real. Plus, it says a lot about what the person writing the post actually thinks about lived expertise.

And respectfully, people with diabetes are not there to be teaching moments for others or to inspire workers. The idea that our existence is inspiring is a little gross, actually. Stella Young termed this inspiration porn and called it out for exactly what it is: using someone else’s lived experience to feel better about themselves. Do better.

And a little note to friends and colleagues with diabetes who are the people in the room – you have a right to expect more. If you’ve been invited, ask what your role will be. Is it as a seat filler (which in itself isn’t a problem), is it to share your story, is it to contribute your expertise? Whatever it is, don’t settle for being the token ‘person/people with diabetes’ in the room without your contribution being recognised.

That’s my little Friday rant. I’ll finish up by saying if anyone reading this who has shared news about some sort of event or announcement and recognises themselves and is feeling defensive right now, sit with the discomfort for a minute. And next time, remember that having people with diabetes in the room means that they are given the same respect, and their expertise is valued the same way.

#NothingAboutUsWithoutUs is more than just a seat at the table. It’s putting together the agenda, driving the discussion and influencing the decisions that follow. And we get named for those efforts.