Position statements - 16 October 2021
Diabetes Australia’s position statement ‘Our Language Matters’
Improving communication with and about people with diabetes
Let’s change the conversation Diabetes Australia started changing the conversation in 2011 when we published a world first position statement calling for “a new language for diabetes”. Since then, the International Diabetes Federation and diabetes organisations in the USA, UK, Italy, France, India, and Canada have published similar statements. In many countries around the world, people are engaging with the #LanguageMatters movement.
There has been some positive change to the words and language used about diabetes over the past decade - but we can all do better. The aim of this updated Position Statement is to increase our support for all people affected by diabetes. This document is a summary of the new statement. Full version can be found at diabetesaustralia.com.au.
Diabetes Australia’s position
Our language matters. The words we choose, and the way we use them, influence, persuade and affect how people view the world. Words do more than reflect reality: they create reality.
Words are powerful. They can create a culture in which people feel valued, understood, and supported – or one in which people feel misunderstood, undermined, stigmatised, and excluded. Words can express conscious or unconscious bias.
The words used to talk about diabetes affect the physical and emotional health of people living with diabetes. They also affect how people in society view people living with diabetes, or those at risk of developing diabetes.
People with diabetes, their families, and people at risk of diabetes, need and deserve communications that are clear and accurate, respectful, and inclusive, and free from judgement and bias.
Words can have different meanings for different people and cultures. It is important to ask and listen, both to individuals and diverse communities. Words and language need to be culturally sensitive and appropriate.
"Words are, of course, the most powerful drug used by mankind.” Rudyard Kipling
Why our language matters
The way we communicate has consequences.
There is ample evidence to show that the current words and language used for and about diabetes has serious problems:
In public/media/general use, diabetes language:
- often stigmatises people with diabetes and those at risk
- contributes to discrimination
- impacts the emotional well-being of people affected by diabetes
- impacts the motivation of people affected by diabetes
- alienates or isolates people affected by diabetes.
In health care settings/services, diabetes language:
- at diagnosis has a lasting impact on the person with diabetes
- is often confusing, unrealistic, inaccurate, frustrating, intimidating, and harmful
- affects continuity of care
- affects willingness to adopt behaviour change or use medicines and technologies
- affects other health professionals’ attitudes and treatment recommendations
- affects the glucose levels of people with diabetes
- contributes to diabetes distress and ‘burnout’ among health professionals and affects trainees’ interest in specialising in diabetes.
Better communication does not take more time; it can save time.
Why be offensive when you could be inclusive?
‘People with diabetes call themselves ‘diabetic’, so why shouldn’t I?’
Evidence shows 1 in 2 people find the label unacceptable and 1 in 4 find it harmful.
People with diabetes are free to use whatever words they wish. Other people – whether they are working in healthcare, media, research, industry or anywhere – have a responsibility to engage all people affected by diabetes in positive, constructive ways. Labelling a person as ‘diabetic’ runs the risk of causing offense or alienating that person. People are rarely offended by being referred to as a person.
This is just one small part of why our language matters. It is so much more than whether we use the words ‘diabetic’ or ‘person with diabetes’.
Our words need to show we CARE
Curious – Ask a person how they are feeling, how things are going in their life, and how that might be affecting their diabetes.
Accurate – Be clear and concise. Use plain language that describes recommended change, action, or behaviour without judging the person.
Respectful – Provide information in a way the person can understand; acknowledge their preferences and decisions; recognise their cultural practices and values; recognise they are doing the best they can. Empathic – Empathy shows that you understand the person and their personal circumstances. People with diabetes don’t want to be judged, they want help and support.
This position statement is about helping everyone to respect and understand the person who is living with diabetes.
More than words
Our language is more than just the words we use. Body language, tone and attitude are also important. In addition to words, Our Language Matters draws attention to the need for positive attitudes to diabetes and to people with diabetes.
No matter what anybody tells you, words and ideas can change the world.” John Keating, Dead Poets Society
Our words need to remove BIAS
Blame – Feeling blamed or shamed can prevent a person from managing their diabetes to the best of their ability, or accessing the care they need, for fear of judgement or a negative response.
Irreverence – Showing a lack of respect to people with diabetes is offensive. Using diabetes as a punchline in jokes is not clever or funny; it is insensitive and harmful.
Authority – It is futile to try to ‘make’ people change. Using words like ‘should’, ‘must’, ‘allowed’, can make person with diabetes feel like a failure.
Stigma – People with diabetes often feel criticised, judged and/or misunderstood. This can lead them feeling unable to share their thoughts or to be open about how they manage their diabetes. Hiding their diabetes and how they manage it can affect their emotional and physical health.
Our words matter
In 2019, an international survey found that the following words are unacceptable to many people with diabetes:
Victim 99%
Sufferer 96%
Consumer 95%
Normal 84%
Cheating 95%
Good/bad 83%
Uncontrolled 75%
non-compliant 72%
"When I was a teenager, my doctor compared my HbA1c to a grade at school saying it was like getting a B or C grade...I was very studious and wanted to get all A’s at school, so my diabetes felt like something else that I wasn’t good enough at."
Choosing our words
We can change the way we communicate about people...
| Instead of... | Try… |
| Diabetic | Person, Person with diabetes, Person living with diabetes |
| Sufferer | Person, Person with diabetes, Person living with diabetes |
| Patient | Person, Person with diabetes, Person living with diabetes |
| Consumer | Person, Person with diabetes, Person living with diabetes |
| Normal, Non-diabetic, Healthy (person) | Person without diabetes |
| Difficult/challenging patient | Finding it difficult, Has concerns about... , Has other priorities right now |
| In denial | Finding it difficult, Has concerns about... , Has other priorities right now |
| Unmotivated, Unwilling | Finding it difficult, Has concerns about... , Has other priorities right now |
| Subject, Patient (noun; research setting) | People with diabetes, Participant(s), Respondent(s) |
| Carers | Family / friends |
| Health provider(s), Clinicians | Health professional(s), Diabetes care team |
We can change the way we communicate about diabetes and complications...
| Instead of... | Try… |
| Disease | Condition |
| Mild diabetes | Diabetes |
| Mild hypoglycaemia | Self-treated hypoglycaemia |
| Obese (weight), Normal weight | Healthy / unhealthy weight |
| Diabetic (complications) | Diabetes, Diabetes-related or Diabetes-specific (complications) |
We can change the way we communicate about managing diabetes...
| Instead of... | Try… |
| Adherence / compliance, e.g. adhere; (non-)adherent; comply; (non-)compliant | Words that describe collaboration or doing the specific behaviours, e.g. taking medication, checking glucose levels |
| Cheating, ‘Being a bad diabetic’ | Making choices / decisions |
| Control (referring to diabetes, HbA1c or glucose level), e.g. poor control, good control, normal control, well controlled, poorly controlled, uncontrolled | Manage glucose levels Within / outside target range High / low glucose levels Target glucose levels |
| Correct(ing) glucose levels | Adjust(ing) insulin Optimising glucose levels |
| Fail, failing to, failed, failure, e.g. ‘they failed on metformin’ | Did not, has not, does not... |
| Good / bad / poor (glucose levels) | Use the numbers, refer to choices |
| Intensify / escalate treatment | Tailor / personalise / change to more effective or appropriate treatment(s) |
| Should (not), have to, can’t, must (not) | You could try / consider... Let’s consider your options... You could choose to... |
| Test, testing (glucose) | Check(ing), monitor(ing) glucose |
| Treating diabetes, treating patients | Managing diabetes |
Let’s change the conversation
"Sometimes people [make] a joke but it’s offensive and it means they don’t take the condition seriously and I know they aren’t going to be willing to support and accept me."
1. Start with yourself
- Be aware of the words you use every day and take your language seriously – language is personal and so is diabetes. Think carefully about how your words might be heard and understood by others. Be aware your words may not be interpreted in the way you intend.
- Remember that language reflects attitude – do not use words when talking or writing about people with diabetes that you would not use when talking with them.
- Choose to create new habits – you may need to make conscious, deliberate choices. Choose to be respectful and inclusive, not stigmatising, and exclusive.
- Be aware that we all have unconscious biases – try to minimise these. 2. Have the courage to call out inappropriate words and language • Don’t just accept or ignore it, challenge it – if you hear or read words that are inappropriate, make your views clear. Often, people don’t realise their words are inappropriate, so it is helpful to point out why it is not OK, and why you are suggesting the change.
- Don’t just accept it, change it – if you read words that are inappropriate, and you have the opportunity, then change it.
- Focus on the behaviour and avoid labelling – remember to be respectful, assume the person meant no harm, and be constructive in your critique. • Appeal to the person’s better judgment –e.g. “I’m sure you didn’t mean to suggest...”, “Perhaps you haven’t thought about it before, but...”
3. Remember, our words have power
- Communication is something we all do, every day – small changes make a big difference.
- Communication is the area where we all have the least training – we can all practice use of new words and language – it may seem to take more time but soon it flows smoothly in conversation and writing.
- Communication needs careful attention – but it’s not ‘rocket science’ either. We can all do better in communicating about diabetes.
- We all make mistakes – aim for progress, not perfection.
Full version and suggested citation Speight J, Skinner TC, Dunning T, Black T, Kilov G, Lee C, Scibilia R, Johnson G. Our language matters: Improving communication with and about people with diabetes. A position statement by Diabetes Australia. Diabetes Research and Clinical Practice, 2021; 173, 108655.
Acknowledgements
This Diabetes Australia position statement was prepared:
- In collaboration with the Australian Centre for Behavioural Research in Diabetes (ACBRD). We thank: Dr Shikha Gray, Jennifer Halliday, Dr Christel Hendrieckx, and Dr Elizabeth Holmes-Truscott.
- In consultation with: Australian Diabetes Educators Association, Australian Diabetes Society, Diabetes NSW&ACT, Diabetes Queensland, Diabetes Tasmania, and Diabetes Victoria.
We thank people with diabetes in Australia, and internationally, who have been enthused by our original (2011) position statement, have inspired the current version, and who continue to inspire us every day.
