Who likes to be labelled?

Personally, I dislike being labelled by anything, including, or especially by a disease. Being labelled to my height, my skin colour, etc. is also offensive, and I simply prefer to be referred to by my name (the one I chose).  

Negative language and labels have the power to disempower us, as I spoke and wrote about many years ago, when presenting at a DPP Symposum forum in Western Australia, titled The Power of Language. 

Like James McKillop, a pioneer advocate from Scotland, and so many others with dementia, I have been campaigning against the use of disrespectful language for almost 12 years ago.

Only today, I left a comment on a newspaper article which quoted the CEO of Alzheimer’s Society UK, Kate Lee, in an article titled Massive rise in people in UK suffering from dementia. I doubt they will reply, or that the Alzheimer’s Society UK will comment publicly against it either. 

Living with dementia, means I, and about 50 million others with dementia,  regularly have to put up with a great many negative and disrespectful labels, including:

  • Sufferer of / Suffering from dementia ( I suffer from many things, but dislike being described as a sufferer of any of them)
  • Dementia advocate (if used as the only descriptor of my expertise or experience)
  • Person with the lived experience of dementia (as if that’s all I am)
  • Wanderer (I do wander, mostly when I go for a walk!)
  • A person with dementia who is pacing (I do this, especially when I am in pain)
  • Absconder (yes, I do go walking to get out of the house when I am feeling a bit trapped in or bored, and sometimes even get lost!)
  • Dementia patient ( I am a patient when at my doctors, or in hospital, but do become impatient when called a patient at other times)
  • Demented or having a dementing illness – I am a person first, always.

The other things that come to mind which I find are examples of very negative labelling are the Dementia Friendly Community & Dementia Friends initiatives. However well intentioned they are, they simply on labelling us by our disease and disability.

If these initiatives actually improved my experience or my quality of life, I may be ok with the labelling.

And although aged-friendly is also used, it does not label older people by disease, so for me, it is only when we also have initiatives named AIDS-friendly, Cancer-friendly, Schizophrenia-friendly, etc, that I will be comfortable with Dementia-friendly. 

The investment in the term ‘dementia-friendly’ implies that by being friendly, we will have our human rights realised, our disabilities supported, and will receive Universal Health Coverage, including rehabilitation… 

That is not the case, as peope with dementia are definitely being left behind.

I prefer to say I live with or am diagnosed with dementia; I am not suffering from it. And I also prefer to say I am living beyond dementia, and more positively with it, rather than accepting the Prescribed Disengagement® still being dished out, rather than going home to die.

So my question to you is whether you would like being labelled by disease or disability? 


4 thoughts on “Who likes to be labelled?

  1. Dear Kate,
    Great article! I am also opposed to labelling especially when it is used to make a completely unnecessary generalisation, eg. “elders” as if everyone above a certain age is the same! However I guess it is sometimes helpful when an organisation wants to describe their area of specialism. In which case would it be better to go with what people themselves prefer? Has there been any research done do you know about what term the majority of “individuals living with dementia ” (no offence intended) want? I live in the UK and haven’t come across any information on this.


    • Hi Sue, thanks for joining this important conversation. In terms of being diangosed, almost all people with dementia that I have met and talked to about this, prefer the terms – living with dementia – or – diagnosed with dementia. If of course, you mean an alternative to suffering from??? WHilst some will say they definitely suffer, as do I from dementia sometimes, like the ‘R’ word i te disability space, it is no longer appropriate to use the words sufferer/suffering publicly. And of course, that may all be as clear a mud??!!


  2. I have being labelled too, but find that in order to become part of the conversation, I need to envegel myself onto dementia friendly committees that are anything but. They are a constant drain on my mood and self esteem as I have to carry on a continuous battle to try to get them to include those who have a diagnosis. Life is so much easier and quicker for them if they can be left to get on with their task driven exercise who’s results are largely ineffective. Yet I know that if I resign there will be no dementia voice included x


    • Dear Julie,

      Please know your voice, talent, and wisdom matter to everyone at DAI.

      Sadly, I’ve been in your shoes, and now, because I occasionally speak up against them, I’m actually excluded from some of the meetings that the Chair /CEO of Dementia Alliance International (DAI) would usually be invited to.

      I’ve been writing a blog for many months about that but am a tad afraid of likely increased exclusion.

      Much love, and thanks for being brave. xx

      Ps it’s important to state my opinions here are not those of DAI.

      Liked by 1 person

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