There has been a lot of noise on social media and other places about the use of the word ‘sufferer’ in the last few weeks when referring to a person with dementia. Last week, I received a reply by someone willing to change the term to a person diagnosed with dementia, with acceptance and grace. Such a welcome change from most users of this offensive term, respectful and gracious. Interestingly, the people are the most impolite about it, and who refuse to think we actually have no right to be offended by it, when they are not, are journalists and professionals. Not all, for sure, but many. And also family carers, who my husband and I believe are the ones more likely to be suffering than those of us diagnosed with dementia.
So, does ‘I am suffering from… dementia, arthritis, cancer, MS etc sound more negative and less empowering than, ‘I am diagnosed with…’? Whilst the term suffering may technically be ‘correct’, I cannot see how anyone could not see it is not negative and disempowering. The Dementia Experts, that is, the people living with dementia, have the right to say what is offensive, and what is appropriate. At Dementia Alliance International, an advocacy and support group of, by and for people with dementia, we are gathering members, and building our resources, which will eventually include language guidelines. We are living as well as we possibly can with dementia, and want to change the negative disempowering terminology.
I also find it incredible so many believe they have a ‘right’ to use it publicly to refer to us, even when we are offended by it, and when organisations like Alzheimer’s Australia, Alzheimer’s Ireland, Alzheimer’s Canada and other international organisations have stated in their language guidelines it is an inappropriate word to use since as far back as 2008. As with every topic, there are language guidelines for the media, and I see absolutely no reason why they should be allowed to ignore the guidelines for dementia. Indigenous Australians do not accept being called Abbos or other offensive and racist terms, and people with dementia have the same right to stand up and say we don’t like certain words or terms.
Hence I will continue to hold them to account whenever I see us being referred to as sufferers, victims or other offensive words. Maybe I’m being irrational, maybe it is part of the D-factor, maybe I simply have a right to stand up for what I believe to be offensive and disempowering… who really knows?! No-one calls people with physical or intellectual disAbilities retarded or retards any more, and there would be public outrage at the offensiveness of it if they did. Recently one journalist, Rose George was not only offensive but absolute in her right to refer to people with dementia as sufferers, and then not willing to engage further regarding the fact this word has been listed as inappropriate for years; not only by us, but by the organisation advocating for us in their publicly available guidelines. Such is life, and hopefully my letter to the chief editor of the paper she writes for might offer her another way.
We all use terms and words about others as we wish privately, but when it is in a public forum of any kind, we all need to consider our actions, and how they might affect others. Professionals including journalists, bloggers, and others with a public audience of any kind I believe should be willing to adhere to media guidelines… Even universities teaching dementia courses need to become more aware of the offensive language they are using, and following my Master’s of Science in Dementia Care degree, I hope to make some positive change in that area. As you know, this is one of my ‘hot topics’ and hopefully… is my only rant for this week!