WHO Are You?

Do you remember reading a blog post of mine from a little while ago titled; Hearing Voices? It's one of the most popular posts that I've tapped out and still gets many visits, to this day. I won't link to it - I think if you're interested then just scan down my blog posts list and take a look however, if you're not that interested then in short, it basically promotes the idea that we need to hear from a diverse range of people when it comes to Diabetes advocacy. A good idea, I think and I stand by it in 2022.

And in 2022, I was delighted to be given the chance to attend The World Health Organisation (WHO) Global Diabetes Compact to hear from others and offer my own views on Diabetes Lived Experience. It was a two day virtual event which allowed individuals from around the world to "link up" and share experiences. The meetings were recorded and the WHO will report back on their findings in due course.

That's the gist of it. Of course, you're not here for the gist of things. You want my views and, as always, you get my honest (sometimes overly) and frank (always) views on things which stir me.

I am stirred.

I consider myself to be the Joe Bloggs (blogs! ha!) diabetic. I know! I have a presence online and I know some incorrectly read authority into that presence but I do try to just be who I am, I don't even try really! What you see is what you get, at least in thoughts and personality. As I logged into the GDC, I was hopeful of meeting other "everyday" folk who were living with Diabetes and I did but, sadly, not enough of them.

Let me just explain that I consider every lived experience, from every person managing Diabetes, to be equally as valuable as everyone else's. Clear? K...

...Instead of a large group of individuals from around the world, I noted that the attendees were largely individuals from around the world who work for or have ties with various Diabetes organisations and charities. So, what's the problem if they all have Diabetes? The problem is that if those people were dominant in a group discussion, if they are the facilitators of the break out group chats, then they can easily steer the discussion to their own narratives. Essentially, offering the views of their employer, papers they have worked on, the words of the charities and organisations they represent and their own narrative which they have set as "educators". The value of those views are questionable when salaries and other "agendas" are brought into the equation.

The everyday folk had their chance to talk, including me, but it felt that the tone was being set by those mentioned above as they swallowed up large chunks of the time available to offer "their views". I sat in two different break out groups with different people, the feel and dominant nature of some was apparent and after discussing with two other attendees they felt the same.

*Sigh* how frustrating. Part way through Day 2, I left. I'd heard enough of the same voices and the text messages on my phone proved others were feeling the same way. I am less patient than those kind people and I will leave anything which fills my time but does not fill my heart. It was heartening to hear one person note from her group the following in this tweet. If I'm wrong about this then I'm glad to not be wrong on my own.

At this point I'd like to note the following, also in bold to be clear, to avoid causing upset to individuals:

- Several attendees were lovely, genuine, and just living their lives with Diabetes. I gave them my full attention and probably even a social media follow.

- The WHO reps repeatedly noted that organisation critique was fine and we should "let them have it with both barrels" but individual critique was not.

So, if you attended and we hooked up on SoMe later then you're the sort of person who I value the most at such events; the everyday folk, the non-affiliated. If we didn't hook up and you're that sort of person then you know where your Twitter app is!

Alright, while that is likely increasing the blood pressure of a few, it's important to offer balance because honest and frank, right? So, although I am not entirely happy about the large number of attendees with affiliation to Diabetes organisations, I am pleased with the idea of the WHO communicating with individuals living with Diabetes to get a better picture of how we live and how to communicate with us. It can and should be done better and I also think it's important to not come across as totally negative about the experience because these events will only serve to improve the communications of organisations such as the WHO and ultimately reduce the stigma which many face. I hope more will happen and I truly hope the voices heard are not the same.

The photo? Keith Moon, the drummer from The Who. He also made a lot of noise and caused a lot of commotion.

As you might have seen, a conflict has broken out in Ukraine as Russia has invaded that country. The scenes on TV and on social media are horrifying. What can we do? Well, I don't think there is a wrong way to help if you donate to charities who are active in helping the people of Ukraine. I support many charities but one which has always had my heart is MSF. Medecins Sans Frontieres translates as Doctors Without Borders. When it comes to the health of others in disaster areas, war zones and the like then I think we all have a duty to do what we can to help and help those who directly help! such as MSF. With that in mind, all donations to me via Buy Me a Coffee and all the pennies generated through the ads dotted around my pages will be donated to MSF. I will make up the difference for the fees taken by PayPal and Buy Me a Coffee. That will run until further notice, no time frames and possibly until Ukraine is a free country again. Thank you for reading my blog. 

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Due Diligence

How is your Diabetes Awareness Month going? Still aware, I know. Hilarious jokes aside, there has been a lot of really good information and experiences shared on social media. Yesterday, World Diabetes Day, saw the awareness posts increase further and I think that's a great thing. If we want others to understand the condition which we try to manage 24/7 then it makes good sense to talk about it openly. 

It makes good sense for the people living with D, the Diabetics, to talk openly. Even if the facts aren't always correct, you'll still read first-hand lived experience. I've been an advocate of talking for several years now because, for me at least, it is a source of therapy, information exchanging and a super way to just vent about my T1D.

As individuals, we don't really need to perform much due diligence ahead of publishing our thoughts. It might be a good idea to hold fire if you're angry or upset or going through a rough time with your mental health but I think on a general day we can simply hit the Tweet, Post, Submit, Send buttons without much of a care.

In the world of health care, for profit or otherwise, I think far more care is needed and I think that there is enough information and help around for any business to avoid the brown hitting the fan. That is especially true if your business is Diabetes focused. Then you really need to be getting the right people to give you the right advice because nobody loves a pile on like social media folk while trying to balance their blood glucose levels. Some of us are happy to highlight the damaging, too. What sort of advocate would I be if I didn't vilify the hurtful and stigmatising of my peers? A pretty bad one, I reckon.

I don't actively hunt for the trash content, I have a life. I will amplify it when I see it. I might have a little sarcastic rant or simply pose an open question. Of course, how a business reacts to that is their "business" and how I give my support to them in the future, if I amplify their campaigns, if I accept any work from them, then depends on that next reaction. I think that's the correct way to behave in most aspects of life. See a mistake, highlight the mistake, wait for correction (or not) then move on in whatever direction is most morally comfortable for you.

The World Health Organisation posted some pretty awful things in relation to Diabetes on World Diabetes Day. Normally, I would include a link or a screenshot here but I think many of you have already read that rubbish or it won't take you very long to find it if you haven't and you're very interested. It's disturbing to think that an organisation of that size cannot hire somebody to perform some fact checking over their Diabetes posts and infographics. A little due diligence for the care of their 10.1 million Twitter followers, especially those who live with Diabetes, shouldn't break the bank. I imagine the right Diabetes advocates would offer their time for free for such a thing. 

That is not the WHO's only "gaff". They were busy stigmatising during their Compact summit in April. 7 months later and more trash from the same organisation. I could talk about some of their Covid-19 posts, next. The list is starting to look pretty long and very, very trashy. 

So, right now, that's me done with the WHO and everything related to them. I'm sure they'll cope without me. It was all a bit downhill after Baba O'Riley anyway.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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