Before travelling to Adelaide for the Australasian Diabetes Congress, I had a couple of days in Sydney, and on one of those days, Grumps and I had two meetings that I’ve not been able to stop thinking about, because in both cases, they were about people with diabetes who we rarely get to hear from.

The first meeting was with some of the team at Life for a Child (LFAC). It was great to catch up LFAC General Manager, and meet Rachel who is the program’s Marketing Coordinator.

We then jumped in a cab and headed to Canterbury Hospital and met with a diabetes educator who spoke about some of the challenges she faces working in the diabetes clinic.

Since these meetings, I’ve been thinking a lot about the people with diabetes involved in these programs. For LFAC, it is young people unable to afford insulin and other life-saving diabetes supplies, living in developing countries. And at Canterbury Hospital, it is adults with type 2 diabetes from lower socio-economic and CALD backgrounds.

I want to know more about these people and I want to hear their stories. But I don’t want them told by, or from, the perspective of a supporter or a healthcare professional. In the case of LFAC, the story shouldn’t be about someone who supports the program or what they have discovered now they’ve read about it, worked with the staff, or even met with, and perhaps worked with the people supported by the program.

I do understand that there may be a place for hearing from those with a understanding of a program or service. Dr Fran Kaufman’s article after her travels to Ethiopia was enlightening. But honestly, I now want to hear directly from some of the 3,500 children with diabetes in Ethiopia who receive their supplies from LFAC.

And while hearing about the challenges Marita and her team face at Canterbury Hospital has provided me with some level of understanding about the how the hospital systems and structures impact on her ability to work as well as she can with the people with diabetes who use the service, I really want to hear from those people to truly understand their lives with diabetes and how those challenges affect them.

It is too easy for those of us who are comfortable and confident and already have a voice to tell the stories of others. Or, even worse, to eclipse their stories. That’s not okay because they are not our stories to tell. Our words are not their words. And their stories are the ones that matter here.

If we are in a position to support (financially or otherwise) services and charities, that is great, and it’s necessary in many cases for them to exist and carry on their important work. But if then all we are speaking about is how that contribution or involvement is affecting us, how has the person with diabetes – the one utilising the service/charity – truly been heard?

I got to thinking about this because Rachel from LFAC has been doing a wonderful job making sure that the people who have received insulin and other supplies from the program do have a voice. Their stories are the ones mostly seen on the social pages of LFAC.

And then, I mentioned how I was feeling and they used the term ‘charity (or poverty) porn’ to describe the way supporters speak about their involvement in different causes. They told me that often, the people being supported are presented as ‘needing saving’, and those donating are presented as ‘saviours’.

This sat a little uncomfortably with me, because I am pretty sure that I am guilty of having written about LFAC in those terms before. I am sure I have focused my involvement in LFAC on what I can do and have done to support it; what I have learnt about the people benefiting from the program; how I feel that because I live in a country that provides access to healthcare and I can afford what the system doesn’t provide me, I therefore feel obligated to fundraise and donate.

But when I do that, I make the story about me. And the voice being heard mine. I already have a platform to speak about my own diabetes. But the diabetes here isn’t mine; the stories are not mine; the words people hear should not be mine.

And so, here is Amita’s story:

To make a donation to support children just like Amita, go here.

(Aussie’s can donate at this link.)