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Yesterday, on her first day of school, the kidlet’s English class was about autobiographies. So, we had a long chat about some biographies and autobiographies we’d read – and ones we wanted to read – and why they are a really important way for people to share the stories of their life.
Story telling is one of the most powerful ways to record events, emotions and life experiences. Others who may be going through similar experiences can feel great comfort knowing that others have not only lived through certain situations, but stuck around to tell the story! And it is also a fabulous way to share stories with those not familiar with different places, circumstances or surroundings.
Our stories have the ability to inspire, offer an opportunity to learn, and help make sense of things around us.
So, it took me no time at all to respond with a resounding ‘YES!!’ when I was contacted by Anna Sjöberg from Anna PS and Sofia Larsson-Stern from Diabetesia, asking me to be in their book about people living with type 1 diabetes.
The end result of their hard work is a fabulous book – ‘We can, want and dare …and we have type 1 diabetes!’ – and it features people from all over the world telling their stories of life with type 1 diabetes.
When putting together the book, Anna and Sofia wanted to provide real-life stories from people with type 1 diabetes from all walks of life: from kids and teens
(such as this one who is, quite simply, AMAZING!) to adults doing all sorts of amazing extraordinary, and every-day things. There is a Brooklyn-based chef, an incredible young advocate from Sweden and another Swede whose Instagram profile describes him as a Multisport Team Ninja Warrior! Oh, and a Melbourne blogger and activist.
The books was launched it its original Swedish-language version last year on World Diabetes Day and the English-language version has just been launched and is now available.
This book is not just for people with type 1 diabetes, although, with its stories of hope it certainly would be a wonderful thing to give someone newly diagnosed! It is also for friends and families of those living with type 1, and people who really have no significant connection to type 1 diabetes, because it provides an understanding of the complexities of the condition that we live with and offers a very personal insight into life with type 1.
GIVEAWAY GIVEAWAY GIVEAWAY
I have three copies of ‘We can, want and dare …and we have type 1 diabetes!’ to give away to Aussie-based readers of Diabetogenic, thanks to the team at Anna PS. Just click here and send me a message telling my why you would like a copy. Keep it short – brevity is key here!
I was invited to provide my profile for the book and received no payment for my contribution. I will receive a signed copy of the book for my bookshelf, though, and can’t wait to see it!
We watched the movie Looking for Alibrandi with the kidlet the other night. I remember when the book came out. I’d left school, was in first year at Uni, and still trying to work out who the hell I was. My mum, sister and I all read the book and couldn’t stop talking about it.
That book was one of the most important things I read when I was younger, because it resonated so much. The idea of not understanding where I belonged had shaped a lot of my adolescence, and was continuing to confuse me as a young adult. I know I wasn’t the only one feeling like that – many kids of post-war migrants felt the same way. Not that we really spoke about it, which was why Looking for Alibrandi was so important. It put into words the jumbled thoughts in my head.
My parents moved from Italy to Australia in the late 1940s (my dad) and early 1950s (my mum). They both grew up here – all their schooling was in Australian schools. They speak English perfectly without a hint of an Italian accent.
We didn’t speak Italian at home, and weren’t particularly involved in the Melbourne Italian Community. Most of my parents’ friends were not Italian, and I only had very, very few Italian friends. At secondary school, there were a number of Italian girls whose families would have been similar to mine, and yet they weren’t the girls I hung out with.
I wasn’t really sure where I fit. I didn’t belong with the Italian girls, because their parents were all a lot stricter than my kinda strict parents; they all spoke fluent Italian – often to each other – and were more involved in the Italian community. Equally, I didn’t really feel that I belonged with my ‘Aussie’ friends because they totally didn’t get the overprotective Italian father thing I had going on at home. Or my love of Fiats. (Or that we had Nutella in the cupboard at home!)
I was in this kind of middle ground that left me wondering where I belonged. And it is a position in which I find myself again today in the diabetes world.
I am a person with diabetes. But for the last 15 years (so, for all but 3 of my diabetes life) I have worked for a diabetes organisation. It leaves me in a unique position that brings great opportunities and privilege, but also makes me feel like a complete outsider at times.
HCPs are confused by me and sometimes suspicious of my vocal advocacy on engagement and the power of peer support; others with diabetes are sometimes wary because they wonder just how free I am to be open and honest about my diabetes; within diabetes organisations I am seen as someone who has fingers in many, many pies; global advocates are curious about how I manage to write this blog while still being in paid employment with a diabetes organisation. To avoid confusion (frequently my own), I speak differently depending on the audiences I stand before, and adapt my tone and language and stories slightly to suit HCPs, PWDs, industry reps or government people.
But essentially the stories are all the same and it is my voice telling the stories.
Next week, I’ll be in Munich at the European Association for the Science of Diabetes (EASD) Annual meeting. The EASD conference is an interesting one. It is very ‘rats and mice-y’ – the term I use for conferences where I look confused in most of the sessions because I have pretty much no idea what is being said, however understand enough to know that someone, somewhere has managed to cure diabetes. In mice.
Despite it’s very science-focused content which attracts very science-focused folk, I feel very ‘right’ at this particular conference, because there is a wonderful advocate, blogger and consumer satellite program that means the city is full of ‘my people’. And that is why I am there – for those events.
If I feel as though I don’t belong at EASD, it’s because I am the only Australian advocate there. I have travelled the furthest distance, I am jet lagged for most of the time and people have trouble understanding my accent. But the Italian contingent at the advocate events claim me as one of their own (albeit one of their own who doesn’t speak the language), so at least I feel that I fit somewhere.
So at least for next week, I’ll know my place. And it will be alongside some of the most dynamic, clever, passionate and dedicated people I know. My people. They will teach me a lot as I learn what they’ve all been up to since we last met and I’ll clumsily share what’s been going on here in Australia. That’s where you will find me.
(And you’ll also find me sitting down the back of science-y sessions looking confused. And wishing I was a mouse.)
So many things on my radar at the moment. Here is just a taste!
Gila Monster and diabetes
Over the weekend, federal health minister, Sussan Ley announced the drug Bydureon would be listed on the PBS from 1 September 2016. Bydureon is a once-weekly injection used in conjunction with oral medications for people with type 2 diabetes.
Fun fact: Bydureon is the brand name for exenatide, which is a synthetic form of a substance found in the saliva of a lizard – the Gila Monster. (Please can we talk about how someone worked out that this would be a good treatment for diabetes?)
News from ACBRD
The team from the Australian Centre for Behavioural Research in Diabetes don’t sleep. At least, I am pretty sure they don’t. My office is on the same floor as them and I can tell you that I’ve never seen any of them asleep at their desk. Instead, they work really hard and produce things like these:
Centre Foundation Director, Professor Jane Speight, is straight talking at the best of times, and her commissioned article published on Monday in the Medical Journal of Australia pulls no punches in putting forward a strong case highlighting the need for behavioural innovation in the treatment of type 2 diabetes.
Dr Jessica Browne from the Centre has been leading work on diabetes and stigma, and this piece published recently in Diabetes Care is about the development of the Type 2 Diabetes Stigma Assessment Scale.
Over-achievers the lot of them. And how grateful I am! (If any of you are reading this, stop it now and get back to work!)
AADE / DSMA / diaTribe / Language
I cannot even begin to express how excited I was last week to see so much focus on and discussion about diabetes and language at last week’s American Association of Diabetes Educators conference.
I sat in my office in Melbourne last Friday morning in tears as on the other side of the world in San Diego (where it was Thursday evening) Cherise Shockley directed a tweet chat about language and diabetes. (And a huge thanks to Cherise for reaching out before the chat!)
In this piece from diaTribe, Kelly Close also wrote about language. Check out this BRILLIANT ‘Diabetes: Starting the Conversation’ infographic. I love this SO much!!
I am always on the lookout for diabetes blogs to read and share and this one is just brilliant! Molly Schreiber’s blog, And Then You’re at Jax, is about living with not only type 1 diabetes, but also rheumatoid arthritis. (Another one of us who collects autoimmune conditions…)
For beautiful, sensitive and honest writing, this is where it’s at! Check it out here.
ADS ADEA next week
Next week is the Australian Diabetes Society – Australian Diabetes Educators Association Annual Scientific Meeting on the Gold Coast. Program is live here.
I’ll be writing and tweeting from there for a couple of days next week. Keep an eye out on the #adsadea2016 hashtag to follow along!
New resources for young people from the NDSS
There is little more satisfying that seeing the end result of something that has taken a lot of effort, time and expertise. I am thrilled to show off these beautiful resources that have been produced out of the NDSS Young People with Diabetes Program that I manage as part of my day job.
They look beautiful (the graphic designer is an absolute gem!) but even more importantly, they are full of important and useful information
An online version of Mastering Diabetes can be found here.
And an online version of Moving On Up can be found here.
More about the inclusiveness of the DOC…
My post about the DOC from earlier in the week has generated a lot of really interesting and valuable comment, both on this blog, on Twitter and Facebook and with many messages sent to me privately. Thanks to everyone who has contributed and, mostly, thanks to everyone for being so positive and respectful in their comments.
The purpose for writing was to try to encourage a discussion about how and why some people feel more included than others. I know this is not the first time this has come up and I doubt it will be the last.
I have noticed some common themes in how people feel and am trying to write something about that, but keep feeling clumsy and inarticulate. I’ll keep trying and see if I can make sense of anything – mostly in my head!
Banjos, banjos, banjos
Last week I went to two concerts at the stunning Melbourne Recital Centre. Both showcased banjo players and both were brilliant. One of the concerts was TWO banjo players and nothing more. I don’t know who I am anymore…
But I can’t stop listening to this at work.