Start with support

Sometimes it takes me a couple of days after a big diabetes meeting or event to work out my main takeaways. I think about it and throw things around, reliving certain aspects, considering what was discussed, carefully thinking about all possible interpretations to make sure that I am clear about what people were saying

I didn’t need time after last week’s World Health Organisation Focus Group on Advancing the Lived Experience of People Living with Diabetes because the takeaways were there straight away, loud and clear. 

There were three things for me:

1. The acknowledgement about the importance of language and communication. I wrote about that the other day. 
2. Barriers to access include far more than affordability. Affordability is absolutely a cornerstone of being able to get the best care, take the right meds and use the right technology, but there are a lot of other obstacles and blocks that impact on outcomes. More on this another time. 
3. But, for me, THE biggest take away was the support that was overflowing from most people in attendance, and they way they were looking out for each other, looking to each other, and looking for ways to remain connected to support the astonishing work being done in the community – from grassroots initiatives, right through to involvement in political campaigns at the highest organisation level.  

I have been so lucky to be the recipient of that sort of support from other people with diabetes over the years. Whether it’s invitations to be involved in their projects, or having an EOI flyer flicked my way, or being recommended for something, the love and generosity of others with diabetes has certainly opened up a lot of advocacy opportunities. I have tried to pay it back, and, (to use a #dedoc° voices motto), #PayItForward as well. A benefit of working for a diabetes organisation has meant that I have been able to co-design and develop programs to involve others. Initiatives like the #DAPeopleVoice and countless speaking occasions, and nominating people for initiatives such as the IDF YLD have opened the door for others with diabetes to step through and find a platform for their own advocacy. 

One of the things that I learnt early on is that there is a lot of stuff to go around. If people want to get involved, there are always ways in. Chelcie Rice’s ‘If they don’t have a chair for you, bring your own’ words ring in my ears a lot when I think about making sure PWD have a seat at the table, and I’ve extended that to ‘And make sure you bring a chair for someone else, or give yours up for them’. Increasingly, I’ve done more of the latter.   

Also early on I learnt to ignore the people who did nothing more than complain about who gets invited where, instead understanding my own value and reason for being involved, while also making sure to find a way to bring along those who genuinely were interested in being included and were willing to work to make it happen. (The incredible responses to this tweet show how people got a break in diabetes advocacy and what it’s taken to keep going.)

Supporting others is as easy as sharing someone’s blog or social media posts, linking to them here in my own writing or to their Twitter handle when I mention them, celebrating their work to others and applauding their wins. 

Attitudes of support were demonstrated in spades last week. I had direct messages from dozens of attendees, some reaching out for the first time, that were just so damn encouraging and kind. 

At the same time, I was frantically messaging others to ask about their work and if there was anything I could do to promote it. I sent the #dedoc° voices application link to a number of people who were at their first advocacy meet, and hoped to do more. 

One of the nicest messages I received was from someone I’ve known for years on Twitter, but never actually been at the same event or involved in the same project. We exchanged some lovely messages, acknowledging how terrific it was to finally find ourselves in the same Zoom room, and a hope that it would continue. 

The overwhelming openness, kindness and consideration of others was disarming. There wasn’t a sense of competition or resentment for anyone doing other things. There was appreciation and respect of others’ efforts. And that led to meetings being set up, collaborations taking shape, and a list of exciting new things to check out and share. 

Look, if this seems all a little utopian, maybe it is, and maybe I sound annoyingly Pollyanna-ish. I’m sure that there were some folks there who walked away with a very different vibe. And that’s fine. Not everything floats everyone’s boat. Perhaps not everyone connected with others the same way I did. Perhaps they weren’t as comfortable reaching out to others to offer their support, or maybe they didn’t see or hear anything they thought worth supporting. As always, diabetes experiences – whether in a clinic appointment or an advocacy event – will be different for different people. 

For me, I started from a place of wanting to be there and wanting to connect with others. When I think about it, there is an element of selfishness in my advocacy work, as it’s allowed me to always find a way to connect with others with diabetes, to learn from them, to work together, to jointly elevate our place in the diabetes healthcare space. It’s served me well. And it’s given me the change to receive and give support to others, too. It’s a good place to start. And it’s a good thing to keep doing.

DISCLOSURE

I was invited by the WHO Global Diabetes Compact team to be part of the facilitators at the Focus Group on Advancing the Lived Experience of People Living with Diabetes. I happily volunteered my time.