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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Your Words, Not Mine

It's been an interesting couple of days in the world of Type 1 Diabetes, from my perspective. Last weekend, I enjoyed the Connect One UK online conference more than I anticipated. Although I was select in the parts of the conference which I viewed, and that may explain why I was left feeling positive towards the event, I felt it was refreshing to hear individuals talking about their diabetes, or their association to it, using words and phrases which are not always heard at diabetes conferences. In particular, it was lovely to hear Type 1 Diabetics referring to themselves as "diabetic" or "a diabetic". It was lovely because it felt genuine, it felt like their words, it felt unworried, unsanitized! but in a great way!

Discussions followed, as they generally do following a conference, "Diabetic" was in use again in some quarters and I'm delighted. I'm delighted that individuals who manage the condition are talking, engaging and using their words to describe their diabetes and related experiences.

Language Matters has been a well used phrase and hashtag for several years, now. I agree with it. I fully agree that language matters, as attitude matters, as being respectful matters and as every aspect of being a decent human being matters. Sometimes, we'll likely all fail on those "matters" for whatever reason. We're only human and we all make mistakes with the words we use and the attitude we display towards others and that includes HCPs.

So, fast forward a couple of days and I've been discussing an interview with another person who lives with T1D. He's certainly well known to the general public but we're new to each other. Before we discussed the potential interview, he asked for some examples of my involvement with the world of diabetes. Fair enough. I don't keep a list of "things" that I've done which involve diabetes. I remember things! or, at least I thought I did. It turns out that I've stuck my oar into more than I realise. After a search around, I sent some links and more information. I'll wait to see if the interview happens, fingers crossed.

That little digression does relate to the subject in this blog. I found this piece which I wrote in 2018 for Diabetes Voice; The Impact of Language in Diabetes 

That's right, that's me looking sharp in a suit. After reading through my words of 3 years ago, I've come to the same conclusion; That there are far more important aspects of my healthcare than the words used to describe my diabetes, my management of it and its current status. To some degree, attitude pales in comparison to the importance of my health. I'm a friendly chap, generally, I like a chat and try to get along with everybody I meet but I'd rather a horrible, angry, heart surgeon saved my life than my best mate having a crack with a penknife... I'm rambling, sorry.

We're all different, I know, I get it. Perhaps my stance over Language Matters is soft because of the longevity of my T1D and the serious complications which I've battled along the way. Others react in a demonstrous fashion over words and that's fine. I respect that stance. It can only serve to reduce negative experiences to patients in the clinic. 

How much we, the general public, the PWDs, the diabetics! need to be reminded of Language Matters is something I'm beginning to question. To keep the subject relevant with HCPs is something I agree with. To push it via social media again and again? I wonder if it's more a case of Content Matters in some diabetes circles.

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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