I am Diabetic Hear Me Roar: Tips on Advocacy on WDD2013

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

Well, happy World Diabetes Day.   So by now I’ve seen a whole lot of alarmist headlines about the diabetes tsunami and its potential to destroy the health system and the ticking time bomb for heart disease and amputations that every person with diabetes is. The obligatory television closeups of enormous tracksuited derrieres, the possessors of which are clutching fast food bags and oversized soft drinks are also being aired- happy days.  I’m yet to see landmarks turning blue, but hey, the day is not over yet.

The theme of this WDD is “prevention”.  Given that there is no way to prevent type 1 diabetes, those of us with type 1 diabetes are annoyed by the implication there is and type 2s are rightly, none too impressed with the message that they brought this disease on themselves. There are many obese people without type 2 diabetes and many lean people with it, so things are not as simple as the sound bytes that work well in mainstream media. Don’t blame the media though these messages are coming from the International Diabetes Federation and the diabetes organisations that many with diabetes support financially.

Well, you know what? I’m tired of it! With a combined population that would place us third in a list of the world’s most populous countries, falling behind only China and India in people power we are powerful.http://www.idf.org/worlddiabetesday/2013 With numbers like that we’re a superpower, united our economic power is huge and even though we are scattered throughout the world, governments could rise and fall on the diabetic vote.  Get with the strength people, we are a force to be reckoned with.

There are many diabetes organisations that purport to represent the interests of people with diabetes who promote these messages of blame and stigma. If you are one of the 371 million people with diabetes who is sick of being blamed for the “epidemic of massive proportions”, don’t put up with it any more.  Email, tweet, message on Facebook, send a snail mail letter telling those organisations you don’t like their messages and you’re withdrawing your financial support if more accurate, supportive messages are not portrayed. Threaten/carry out boycotts of companies who advertise on programs that mock diabetes.  If enough organisations get this message and it threatens their hip pocket nerve it will stop. Government bodies may persist, but even they can’t ignore sheer numbers  and will have to become, at least, more careful about the way in which they craft their public health messages.

It’s not like these prevention messages are working, they’ve been employed for a good 15 years at least and the incidence of diabetes continues to increase, so new strategy please.

I’ve always believed that the best approach to advocacy is talking with people face to face.  With so many people with diabetes, we are ideally suited to a personal approach to educating and advocating for understanding and awareness of diabetes. If each person with diabetes educated just one other person a week, with just the basics of the disease, that there are different types of the disease, this is what you, personally have to do to manage yours and this is why medical and peer support is vital then that would be 19,290 million people educated in one year alone. It doesn’t have to be anything formal just a 5 minute chat when the topic of diabetes comes up, at work, at home, at the supermarket, anywhere really.  That is so much more powerful than lighting a monument blue, a message which is unclear and soon forgotten (especially as it’s blue this week, was pink last week and will be green the next) UNLESS it is backed up by people like us giving informed and sensible commentary around it.

Carpe diem let’s change the diabetes agenda my friends, one person at a time.

 

6 thoughts on “I am Diabetic Hear Me Roar: Tips on Advocacy on WDD2013

  1. I do think we need to remember that “prevention” also means preventing diabetes-related complications, for which people with all types of diabetes are at risk. When “my diabetes” becomes “our diabetes,” it’s easier to gain the knowledge and strength to do all that we can to take good care of ourselves—and each other.

    1. Hi Kelly,

      Thanks for commenting. I totally agree that sharing diabetes with others who understand, “our diabetes” is so important, my first blog post was about coming out of the wilderness and describes the sheer joy of connecting with others who have diabetes.

      It hadn’t occurred to me that the “prevent diabetes” messages included complication prevention. I guess that’s the issue with the sound bytes that I was railing against, the message is distilled into its simplest form for mass media campaigns and social media stuff like twitter. Must say I’m not keen on most of the mass media campaigns I’ve seen on preventing complications either-there was a horrible one in Australia a few years ago-pictures of amputations and eye surgery on buses and tv. It’s the same sound byte approach and encourages blame and shame re complications too.

      Enjoy what’s left of your WDD2013, it’s now tomorrow in Australia. Hope to see you at WDC2013 in Melbourne.

  2. Bravo Melinda!

    There are many reasons I applaud this post, but I think the one thing that I appreciated most was Kelly’s comment and your response to it.

    Prevention is also about preventing the complications, although I’m not sure the International Diabetes Federation was explicit enough on that subject.

    Thank you for sharing this and, most importantly (to me anyway), for letting me know you wrote this. I look forward to reading, and learning, more from you.

    (On a side note, I’m in Toronto, Canada and am disheartened that our biggest landmark, the CN Tower, opted to not go blue.)

  3. Thanks Rogue girl. Looking forward to reading more of your blog and sharing. It’s such an amazing thing to be able to interact with people on the other side of the planet and find we have so much in common and share so many of the same challenges.

    I live in Sydney, Australia (think you have a Sydney in Canada too) and the beautiful Sydney Opera House did go blue for WDD. It is a landmark just made for such events.

    1. HI Mel
      Not to be devils advocate or anything but with the utmost respect – we have enough on our platters as T1D’s to be constantly “correcting” or gently educating people each time they say something about my T1Diabetes…it’s hard work and…I’d be talking my head off 7 days a week, 52 weeks a year!….and to be honest the problem with talking to people face to face is that we are in the minority (122,000 T1d’s compared to 900,000 T2D’s)….and we’d never get it done in our lifetime and in the meantime T1Ds keep getting complications and young children keep getting bullied and discriminated in the schoolyard, and young adults in the workforce! And then we have the problem of the Media! The Media STILL keep getting it wrong (no matter how much we ask them to “preface” which type of diabetes they are talking about),….talking to people face to face unfortunately won’t ever get us a cure in our lifetime – isn’t it about time some organisation focused on a CURE, and didn’t TRY to help ALL people with diabetes ? Type 1 is such a DIFFERENT disease! It deserves a cure – it can’t be “prevented”
      I’m getting off my soapbox now I promise…;) See you in Melbourne….;)

    2. Hi Gina,

      Thanks for stopping by and commenting. I can’t tell you how sincerely pleased I am to see you still working in type 1 diabetes advocacy, you’ve made a massive contribution, particularly via the media, over decades now, all kudos to you and keep on that soapbox! I think we agree about more than we disagree. My post was a reaction to World Diabetes Day 2013, it doesn’t cover the entirety of my feelings and ideas about advocacy and the needs of those of us with type 1.

      I think there have been some changes in the advocacy landscape recently, particularly with the advent of social media, some opportunities and some threats. Look forward to being able to chat about this and swap a few war stories at WDC in Melbourne.

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