Way, way, way, waaaay back in 2011, SD welcomed with open arms the Diabetes Australia position statement, 'A new language for diabetes'.
It has remained on the ‘SD Downloads’section of the website ever since (scroll down here to download your own copy)
Screeching right back to 2017, Renza Scibilia, the highly esteemed Australian diabetes advocate and blogger at ‘Diabetogenic’ has reminded us, after an extremely popular session at the American Diabetes Association Conference 2017, that 6 years on, the contents of the document are still a revelation to many and do not go nearly far enough
More than this, there is not an equivalent in the UK – or many other countries
See Renza’s inspiring and thought provoking blog here
Successful Diabetes regularly calls out inappropriate language around diabetes, including the word ‘subject’ for research participant and negative and judgmental terms around blood glucose results and behaviour. On the radio recently, I felt I needed to challenge even Diabetes UK’s wording,in a press release for Diabetes Week, that people were ‘failing’ to eat enough fruit and vegetables
In workshops, we make regular references to the way careless language applied to people in consultations, can be distressing and demotivating. A famous cartoon showing a sign, above a diabetes consultation room door, saying ‘next pancreas please’ sums up nicely what can happen when language is ill-considered
To date, one of the worst impacts I have heard, is someone who described feeling ‘like an HbA1c on legs’, such was the greater emphasis on her biochemistry than her as a human being. Many of our previous blogs have talked about person centred (and less so) approaches, for example in consultations
But there is more to do
Renza’s call is for the language of diabetes to be front and centre, and for accepting, inclusive, neutral and non-judgemental terms to be used by everyone in the world of diabetes. In short, to make it unacceptable to treat or refer to people living with diabetes with anything other than these terms
Some people with diabetes feel that words and language in relation to diabetes don’t matter as much as other things and, for example, whether they are called ‘diabetic’ or not, is immaterial
My view on this is completely clear. This is not a call for people living with diabetes themselves to ‘mind their language'. Anyone is perfectly free to refer to themselves and their condition however they wish – as in most other areas of life. This is about how other people, and especially health professionals and scientists, use language in relation to diabetes and those with it, and especially when they are not in earshot or attendance
When perjorative, judgemental or discriminatory terms are used, however unconsciously, by others about people with diabetes, it implies their belief and attitude towards them. If you don’t believe me, try this: heard from a highly qualified health professional giving a teaching session for other health professionals. Giving an example of someone attending their clinic with a particular condition, they said of them: ‘typical diabetic, never does anything right’. If that is the attitude expressed outside the consulting room, it is fair to ask what is it like within it? And also, what does it say, that this view is being promulgated among others who also consult?
Whether we like it or not, these kinds of ‘throwaway’ comments are alive and well and common, and belie an attitude far from the ‘individualised’ ‘courteous’ or ‘collaborative’ that are so often recommended in documents and policies
If you want to get started in using a different language for diabetes, there are some remarkably easy tips:
• Read the Australian document ‘A new language for diabetes’ and pick a few terms to replace the ones you already use;
• Become more conscious of your language around diabetes – for example, do you inadvertently refer to people as ‘diabetics’, as if they were all the same (the excuse ‘I do know they’re all individuals, it’s just a convenient shorthand’ is not good enough, by the way!); do you regularly think of people being 'non-compliant' or 'tablet failures', even in your head? Awareness that you are doing this is a great first step
• Try using the word ‘person’ next time you’re tempted to say ‘patient’;
• Talk about ‘progress’ or ‘information’ rather than ‘results’; ‘food’ rather than ‘diet’; ‘activity’ rather than ‘exercise’;
• Give the actual numbers to someone, that relate to their HbA1c or blood pressure, and the recommended range for comparison, rather than simply your judgment about them (for example, ‘your blood pressure is too high’);
• Listen out for how your colleagues and others refer to the people they are seeing. Is there an (albeit unconscious) bias towards negative, judgemental or gender stereotype?
These are just to get you started, you’ll find many more ideas in the Australian Position Statement document
There’s another aspect to language in diabetes, which extends to general healthcare, too. That is, among health professionals and colleagues themselves.
There seems to be an unspoken, or even sometimes spoken, hierarchy, one based on perceived power and gender, which comes out in our language. For example, when talking of teams, the first people cited are often the doctors. Within that, it’s an almost hard-wired assumption that ‘Dr’ = he (how many times have you heard or even said ‘he’ about a doctor, when they turn out to be a ‘she’?)
Then it’s the nurses, then everyone else, especially lowly mentioned tend to be admin staff. Some key team members, such a psychologists, rarely even get a mention
It’s a rare team that isn’t assumed to be, or actually, led by the doctor/consultant, and it’s also common for ‘my’ to be applied by the aforementioned lead, as in ‘my nurses’, ‘my staff’, ‘my team’. Not everywhere, not everyone, but there is something to be addressed here, too, I believe
WanD to the rescue?
Do we, perhaps, need a campaign to have our own UK language position statement for diabetes? One perhaps created with the help of Diabetes UK, and, as Renza suggests, one which could be issued to, and expected to be used by, all and any organisations and persons who purport to advance the welfare of diabetes and diabetes care?
Such a position statement could be based on the Australia document, so it doesn’t have to be a difficult task to create, and creating it doesn’t have to take long
Doing this would mean that if we truly believe that language about diabetes matters (and there is plenty of evidence that it does), we will be putting our beliefs into action in a really practical way – and helping to foster the true person-centred approach that 21st century diabetes care deserves
I suggest a call for support could be called ‘Words and Diabetes', or 'WanD' for short. According to my research, there is a hashtag ready and waiting, which is #WanDLanguage (#wand already taken!)
Support is needed for this idea. Whatever your perspective on diabetes, if this idea resonates with you and you believe that here in the UK, we need our own ‘new language for diabetes’ please comment below, tweet using #WandDLanguage or write to SD at firstname.lastname@example.org
For my part, I’ll be approaching everyone I know to try to wave the ‘WanD’ and get such a UK position statement on Words and Diabetes off the ground
Where will you start?
Thank you for the prod, Renza! #languagematters #WandDLanguage