The Black and White of Advocacy

A couple of weeks ago, I was attended (and presented) at the second HealtheVoicesAU conference organised and funded by Janssen/Johnson and Johnson. HealtheVoices is unique as, firstly, it’s not full of researchers but health advocates. Secondly, the delegates are not solely people with diabetes, which makes it all the more interesting. It allowed me to gain a different perspective and insight from others living with other conditions. 

As expected, the event was a fantastic day full of inspiration, tears, laughter and reflection. I presented on the challenges of wearing many different hats in the health space. For me, that’s been my personal battle this year, as I have felt my role in the diabetes community gradually shift over the years and especially so after I received my PhD. This is partially also why my blog has been quiet (apart from trying to keep up with new job!).

After hosting my panel presentation at HealtheVoices, I have come to realise that there is no black and white in advocacy. There can’t be. In reality, we have so many perspectives and insights that are all important voices contributing to the bigger picture. The most important thing when it comes to consumer representation is that a person is able to look beyond their own needs and biases in order to represent their community.

As a diabetes advocate, I have been lucky to have attended various leadership courses and workshops on how to communicate and work with different stakeholders. Together with my experiences through research and as a healthcare professional, I feel confident (after telling the imposter syndrome voice to be quiet) to join the conversation at these tables.

Being a consumer representative is a huge responsibility that requires a person to be able to have the networks and empathy to draw from various perspectives. The way a consumer representative communicates with others on an advisory board or in a research is also absolutely critical. It’s for this reason that the Health Issues Centre in Australia offers training for consumers to be more effective advocates in different spaces.

Currently I’m on two organising committees, one as a consumer and the other as a dietitian/researcher. The way I approach my role in these are slightly different depending on the responsibilities that have been allocated to me. However, I still draw on all of my experiences and knowledge as a person living with diabetes, a healthcare professional and a researcher.

For some organisations, this may be a first step towards embracing those concepts of having a lived experience voice on the team through consumer engagement. And there’s so much we can from others such as SANE Australia who ensures that the lived experience voice is always around.

I’m not going to lie. We still have a long way to go to make consumer engagement a non-tokenistic gesture within the diabetes community. If we’re going to embrace the nature of co-design (which no one has yet given me a reason not to), we have a lot of work and relationship building and consumer training to do to make sure that people with diabetes are adequately represented in diabetes organisations and research groups.

Disclosure: As invited speaker to the HealtheVoicesAU, my flights, accommodation and meals were provided for by Janssen. I was also paid for my time to prepare and lead the panel presentation during the conference. However, they have not asked me to write about the event nor was I obliged to. These are just my two cents.