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Defining Diabetes

May 8, 2014 in Advocacy, Awareness, Diabetes, Stigma | 4 comments

How do you describe diabetes? I vary from ‘an inconvenience’ to ‘an effing pain in the arse’ and lots in between.

I’m all about words. Language is very important to me and I spent a lot of time crafting messages about living with diabetes that balances the ‘this is shit’ component with the ‘this is just life’ side of things.

One of the reasons that getting the language right is actually not so much for the people living with diabetes – we know the details and we know the words we choose to describe it. No; it’s for others. Because when we get the language wrong, we start to open ourselves up. To discrimination, stigmatisation, misinformation and negative perceptions.

It’s for this reason that I refuse to use the word ‘disability’ when talking about MY diabetes. There is much written about and debating ‘is diabetes a disability’ and I am definitely not qualified to really enter this discussion in any other capacity other than ‘this is my opinion’. And my opinion is coming from someone who has 16 years of diabetes under her belt with no significant physical or mental complications because of diabetes.

However, my beautiful, gorgeous friend and neighbour Jo is an expert here, so I called her and yelled ‘help me understand this!’ Jo has type 1 diabetes (believe me – there is a blog somewhere about two people with type 1 living two doors down from each other….) and is a speech pathologist who has worked in the area of disability for a long time. She’s clever, compassionate, direct and doesn’t mess around with words. Jo will hate me for saying this, she has recently been recognised with a nomination for a life-time award for working in the field of disability. She’s more than kind of awesome.

Jo suggested I start by having a look at the World Health Organisation’s definition of disability. This sent me into a world of pain because there were words I simply didn’t understand when put with other words and you know, comprehension.

So, I yelled at her some more (it’s what people do when they don’t understand) and here’s what Jo said that made sense to a fool like me:

JO: Renza (you stupid chicken who may make decent brownies but you’re pretty bloody simple, really). What I’m trying to say is that the social model of disability says the disability doesn’t belong to the person with the condition (that would be considered the disability) – let’s say someone with cerebral palsy, for example. It belongs to the environment. The environment doesn’t allow for the disability to be accommodated. People with diabetes can accommodate themselves – carry or buy sugar if they are low is a basic example of accommodation.

RENZA: So, is it like this? The environment accommodates my particular needs. If I was sitting an exam, I could take time to check my BGL or treat a low or take an extra loo break if necessary. But if I had a condition that didn’t allow me to physically or mentally sit for the three hours required to do the exam or have the capacity to understand the questions being asked then I’d be considered as having a disability?

JO: You’re simple, but yes. Now go make me some brownies.

Of course, diabetes throws all sorts of things into the mix including complications that may result in disability. But for me as diabetes affects me now, there is no reason that I consider the fact that my beta cells decided to shut up shop and move to the tropics as a disability.

I see diabetes as a ‘delayer’ at times. There are times that RIGHT NOW it stops me doing what I want, but this is generally remedied quickly (sometimes, not-so-quickly) and I can do whatever it is I planned to do.

The reality of life is that people face challenges of varying degrees. I’m leaving the last word to the clever Jo who says: Some people have challenges that can relatively easily be overcome and others (perhaps someone with a profound and multiple physical and intellectual disability), can’t live, without considerable effort from their environment to keep them alive, and if they are lucky have some kind of quality of life. It’s all relative!

I’m very interested to hear what others think about this. Where do you stand? Do you have an opinion? Do you consider or refer to your diabetes as a disability?

Diabetes Stigma Project

April 29, 2014 in Awareness, Diabetes, Real life, Social media, Stigma, Wellbeing | Leave a comment

There is a lot of stigma associated with many health conditions. We know that there is significant stigma when it comes to mental health. Groups such as Headspace provide fantastic information about how and where to seek help as well as support initiatives such as the Fifth Army movement which promotes mental health awareness.

But I think that diabetes experiences the worst stigma of all because it seems okay to blame people with diabetes for their condition. This seems to be the case more for type 2 diabetes, but people with type 1 also report being stigmatised and discriminated against because of their diabetes diagnosis.

Any time diabetes is mentioned on the news, it is accompanied with photos of overweight people digging into a burger or slouching in front of the television. Accusations of laziness, overeating and a sedentary way of life follow and before you know it, people are pointing and saying ‘you brought it on yourself’.

Whilst we can excuse this as ignorance or just plain stupidity, it doesn’t change the fact that living with diabetes is tough enough on its own without having to worry about being shamed for having it.

So it was with much excitement that I read about the new Diabetes Stigma Project, an initiative of Dr Jessica Browne and Adriana Ventura from the Australian Centre for Behavioural Research in Diabetes. I know both of these women and am not at all surprised at how well considered this project is.

Funds collected will be used to develop a short questionnaire that will measure people’s experiences of diabetes stigma. The questionnaire will form part of a larger survey that will also examine depression, anxiety, diabetes-related distress, self-management, employment and social support.

This is, indeed, an ambitious project. But providing a clear snapshot of the situation will help address not only the impact of stigma as it relates to those of us living with diabetes, but also find ways to reduce stigmatising behaviours from occurring in the first place.

How can you help?

If you can, consider making a donation to the project. Any amount would be appreciated. The project’s target is $5000, but of course, more money will allow the survey to reach more people and provide a broader understanding of the social stigma associated with living diabetes.

And this is where social media comes into its own!

‘Like’ the Diabetes Stigma Project Facebook page and share the link with all your networks. Share on Facebook and Twitter and even consider writing a far better blog than this one! Tell your friends and family about it and explain why this is such an important issue.

To keep up, follow #diabetesstigma on Twitter and keep an eye on their Instagram – @diabetesstigma. And here is their YouTube clip which you can share with everyone you have ever met!

The Australian Centre for Behavioural Research in Diabetes (ACBRD) is a partnership between Diabetes Australia – Vic (DA–Vic) and Deakin University. I am employed by DA–Vic and do not work for the ACBRD, however have been involved in some of their projects. No funds raised in this campaign will directly or indirectly contribute or fund the work I am employed to do.