Choice of language has the power to help or hinder

Times change, and with that, even the things we learned as children may need to be rethought.  I remember my wonderful Mum telling me that sticks and stones may break your bones, but names will never hurt you.  We were raised to be resilient.  However, we now know that verbal bullying can indeed be very damaging, and with social media, it is a new scourge.  The rethink of bias in language and communications is widely accepted and welcomed.

Whether you think political correctness has gone too far or not, its origins come from advocates who have challenged bias, conscious or otherwise, and its consequence.  These consequences have often been unintentional, simply because they haven’t been experienced by those creating them.  That does not make the experience any less real.

One of the consequences of bias in language is stigma.  In Alzheimer’s WA’s 2014 study of what it was like to live with dementia in Western Australia, the most common concern of those with dementia was the stigma they experienced, often immediately on diagnosis. What a sad reality this was to read about in the report, in our enlightened, compassionate society.

The late Dr Richard Taylor, psychologist, founding member of Dementia Alliance International (DAI), and a person living with younger onset dementia, said, “Stigmas define who we are, unfortunately. Those stigmas are not confined to the misinformed media. They are in all of us.”

Richard was not alone in his view of the harmful impact of stigma on those seeking to live the best life possible after a diagnosis of dementia, just as those with cancer or other chronic diseases do.

Kate Swaffer is an Australian, also a founding member of DAI and currently its chair.  Kate is a disability rights activist, author and speaker. Kate also lives with younger onset dementia, diagnosed at the age of 49.

Kate has strong views about stigma and language, created by her own experience of stigma after her diagnosis of dementia.  Kate has particular views on ascribing the word ‘sufferer’ to those with a diagnosis of dementia.  Her writings on this not only challenge but also inform our thinking and understanding of what it is like to live with dementia.

The word suffering implies unrelenting pain and distress. Whether you look on Wikipedia, in the Oxford Dictionary or even the Bible, the two words you will see that constantly describe suffering are ‘pain’ and ‘distress’.

Yet if you ask someone living with dementia if they are constantly in pain or in distress, chances are they will answer ‘no’.

Those who work in the dementia field will be familiar with the statement that if you know one person with dementia, you know one person with dementia. That is, everyone experiences dementia differently. The symptoms are many and they vary from person to person, and change throughout the dementia journey. What may be viewed as suffering by you could just be a new reality for the person actually living with dementia.

In her blog ‘Living Beyond Dementia’, Kate said that labelling people with dementia as sufferers is unhelpful, especially for the many who are trying to live with (not just die from) dementia.

“It ensures the majority of the experiences of those diagnosed with dementia starts from the notion there is only suffering ahead, rather than from the real possibility there is life, and even a good life to live after a diagnosis,” she said.

“It colours the experience negatively for us all.

“And by constantly declaring we are all sufferers, it virtually ensures we become victims and further disables us.”

One of DAI and Kate’s current projects involves working on a set of universally applicable language guidelines for dementia. Any project that helps to raise awareness and break down the stigma associated with dementia is a positive step forward.

At Alzheimer’s WA, we have our own set of language guidelines, informed by those living with dementia.  We also work hard to increase the understanding of dementia in families and in the community.  Given there are more than 41,000 Western Australians with a diagnosis, and that the majority live at home and wish to live a life of purpose and engagement while they are able, it is up to all of us to enable that in our interactions, including our language.

Perhaps my Mum wasn’t right in everything after all.  Not only do words hurt, but they can contain and communicate bias and stigma, and for people living with dementia that’s harder and more insidious to dodge than sticks or stones thrown by some bully on the way home from school.

Tips from Kate Swaffer

• Don’t say, ‘but you don’t look or sound like you have dementia’
• Don’t tell us we are wrong
• Don’t argue with us or correct trivial things
• Don’t say ‘remember when…’
• Don’t call us ‘sufferers’ or ‘victims’
• Don’t refer to us as suffering, demented or fading away
• More tips can be found on Kate’s blog: kateswaffer.com/daily-blog/

20 things not to say or do to a person with dementia, Kate Swaffer

Reproduced with permission of Kate Swaffer.