What we can learn from those who know how to demand change
While at the Sanofi headquarters last year for a project, which rather terrifyingly was a half hour live interview, I was fortunate to have a quick conversation with Dr John Forni (country medical director). Despite my slightly elevated heart rate and sweaty palms I mentioned that I’d found this advocacy work really inspiring and was looking to progress this in the future. To which John very kindly recommended a meeting with a well known HIV advocate called Tom Hayes-Isaacs in order to learn from an expert the best ways forward.
In stereotypically me fashion I turned up at St Pancras a good hour early as I was anxious about being late but in turn traded this instead for walking around anxiously for an hour getting myself worked up about what was ultimately a fairly relaxed meeting. We met at a venue right near the station.
I spent the next couple of hours with people who had been and done everything that I’m trying to achieve. John and Tom were very modest about their achievements but I felt very fortunate to be sat across from people who had for example spoken at the UN multiple times on behalf of their community. I found it very interesting how advocacy for our conditions overlap; stigma, common myths, the way cost is often prioritised over adequate care etc.
One of the interesting topics we discussed was the different forms of stigma which are:
External Stigma-negative beliefs/attitudes people hold against us
Systemic Stigma-when those negative beliefs are embodied in laws/institutions
Self Stigma-when we direct these negative beliefs/attitudes towards ourselves
Perceived Stigma-something we all know too well, when no malice is meant and yet the anticipation of stigma causes us to see what’s not there.
I think we can all recognise examples of how each of these have affected us.
We also discussed the issues people of colour with skin conditions face when advocating for themselves. For example the contrast is not quite so dramatic on darker skin tones which must make it even harder to get health care providers to listen and take them seriously.
Something which I took inspiration from was how self assured they both were. You can tell Tom doesn’t tolerate any nonsense and is very able and willing to call it out. This is something I think is vitally important for me to work towards. Like so many people suffering with chronic conditions I feel like I’ve had the confidence beaten out of me. However if I want to be an advocate and speak on people's behalf I need to have a loud and confident voice to be heard by the people I need to sit up and listen.
They were both very generous with their time, I know John in particular has a job role that involves him travelling a lot so I was very grateful for the opportunity. I then had to dart off before my £12 ticket on the train in became a £71 ticket for the way home.
Unfortunately progress can be very slow without a strong community refusing to be dismissed and demanding the change they need. The HIV community is a textbook example of how to get things done and we need to use them as inspiration for how to get the changes we so desperately need.
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