‘Be informed, inspired, incentivised, indignant and incensed’

“Be informed,  inspired,  incentivised,  indignant,  & incensed” was the heading of NCDAllliance Forum 2017 Update on December 11, 2017. The update began with this powerful quote from Katie Dain, CEO of the NCD Alliance.

“We urge you to continue the conversations you started here. Continue communicating with partners – both old and new. Continue listening to and engaging the voices of the next generation. Continue agitating for change…for health equity…for the sake of every person living with or at risk of NCDs…for the sake of us all.”  (Katie Dain, CEO, NCD Alliance)

Katie’s quote, and this event inspired me to write the following:

“This event has inspired me to agitate more, and although perhaps not great news for some, to be even more indignant and incensed about what is not happening for people with dementia. In fact, the title of this update reflected almost exactly how I felt throughout the whole NCD Alliance forum.” (Kate Swaffer, Co-founder, Chair & CEO, Dementia Alliance International)

The image above is from one of the panel sessions during the NCD Alliance 2nd Forum in Sharjah I attended recently. These are some of the quotes I noted down as relevant and important to remember as a someone who is leading an advocacy organisation.

During this forum, there were two international days being celebrated, and the first comment did make me wonder. I wrote a blog for DAI on December 10, as that day we celebrated the 70th Anniversary of Human Rights Day, and on December 12, it was Universal Health Coverage Day, and the first quote highlighted below made me seriously question the value of all days celebrated internationally, as the cost in terms of time and funds is high for most to promote their organisations. I’m actually less worried now about the lack of funds for DAI to be more involved in these types of International Day campaigns.

“Campaigns and national or international days will not change behaviour.” and “Choose your advocates wisely, as not everyone living with an NCD can be a good advocate.” (Mrs Nisreem Quatamish, Jordan, seated 2nd from the right)

“Advocacy needs to be fun, meaningful and truly worthwhile for advocates in an organisation, or they won’t last.. We also need to create a sense of belonging.” and “You have to be allowed to make mistakes as an advocate.”(Carisa Lindberg, seated 2nd from the left)

It takes a lot of courage to become an advocate in the first place, then an enormous amount of grit and resilience to keep going. In fact, much more than I had ever imagined.

Mrs Nisreem Quatamish’s second quote reminded me the other really important asset to advocacy is diplomacy, and yes, I know I’m a slow learner in that department, but I do now see clearly if we want to get anyone to listen to us, we have to learn the art of being more diplomatic, and much more polite when we really feel like yelling, as well as the art of being persistent and determined, rather than too angry or aggressive.

Feeling indignant and incensed about what is wrong in the dementia world is okay, and sadly, is still very necessary. Our human rights are still being blatantly violated and change is too slow. But this can lead advocates to come across as too pushy or angry, and the after effect of that is that then, no-one wants you at their table, and nor will they want or bother to listen to you. As an advocate, who has transformed into an activist, I will continue to question everything, as diplomatically as humanly possible!

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