Speaking my mind…

not rude just honestJack Nicholson famously once said in a movie, “You can’t handle the truth”. For many, this is the reality, and being honest and direct is my biggest ‘weakness’ or ‘fault’. I’d have to say, I don’t actually care any more as I have never intended to be rude with my honesty, but many find it offensive as they either cannot handle the truth, do not want to hear the (my) truth, or don’t or won’t look in the mirror honestly. I regularly look in the mirror at my faults, and work on those that come from my dark side. It is hard work!

We all have a dark side, and can be unkind without meaning to be. That is worth working on, always, but telling a lie, just to make someone else happy, is not part of who I am. Being honest or true to me, does not always make it right for others. But, it is right for me. If I have interpreted something differently to others, that does not make me, or them, right or wrong. Just different.

I do have a lot of opinions about things related to dementia, especially the care of people with dementia, as many things that are happening currently are not best care, not good for us. The post diagnostic pathways currently offered to most of us are not only un[palatable, they are unethical. The disabling nature of many family carers and health care professionals does not support our abilities, but further disables us.

That stigma and discrimination are still rife is shocking, and unfortunately still very present in the health care sector, and amongst some carer and advocacy organisations and many individuals.

The disrespectful language, still being used by many, and argued by many as ok to use, even though they would NEVER call someone a retard, continues to astound me. It is not ok to say people can slip up on language, especially if they don’t slip up and call someone a retard…  because that is offensive (to them).

The time is now to show respect and to embrace the language that so many with dementia say is offensive. Yes, we do suffer some of the time, but many of us are not living as if we are ‘sufferers’ or victims. It is not pure semantics, it is to do with basic human rights and respect.

18 thoughts on “Speaking my mind…

  1. Hi Kate,
    Just one quick comment: thank god for all the “Kate Swaffers” of the world! If your passionate advocacy is making huge strides is EXACTLY because you speak your mind with eloquence and sheer honesty. Keep up the great work, we count on you. xoxo


  2. Hi Kate

    I’m a fairly reserved person but feel angry when words like ‘time bomb’ are used in connection with dementia. I’ve had opportunities to ask some prominent people in our field how they feel about it and been surprised that that they did not seem to have thought about its implications when talking about demographic trends.

    At the recent Geneva WHO Ministerial Conference on Dementia where you gave such an inspirational and calm presentation, I was pleased to hear the CEO of the UK Alzheimer’s Society (who was then sitting at the back of the room among the NGOs) putting in a quiet plea to the conference to avoid the term ‘dementia sufferers’ because many people found it offensive.

    But ‘tidal wave’ was used by Dr Margaret Wang, the WHO Director in closing the conference. She did a great job in setting the scene at the outset and in launching the final Global Call for Action. This included a commitment to what you and the NGOs had been demanding – a human rights and ‘Nothing About Us Without Us’ agenda. She’s definitely on our side but she needs someone to help her ‘watch her language’. JOB FOR YOU AND DAI, KATE?

    I’ve been involved in research, teaching and advocacy in the wider disability field all my adult life.
    When I started work in the 1950s we were officially classifying people as idiots, imbeciles and morons and excluding them from school as ineducable. In the 1960s a progressive Minister of Health proclaimed that THE mentally defective’ would henceforth be renamed ‘mentally subnormal’. Battles then had to be fought against terms like mongol and spastic because they were degrading and were being used as terms of abuse. We all learned to say ‘people with Down syndrome’ to emphasise that the person comes first.

    The use of ‘people living with dementia’ is a good start in that tradition. You’ve published and blogged to great effect on the language used by professionals, politicians, the media and the general public. The plea you are making for more respectful language now needs to become a global campaign taken up by all national and local Alzheimer’s Societies so that it reaches everybody.


    • Thanks you for commenting her ePeter, and for your kind words.
      And yes, I too dislike the WAR language intensely, but changing that will be even harder than changing language away from ‘sufferers’ and ‘victims’!
      I will reply to your email and make a date to see you in the UK… very much looking forward to it.


  3. Hey Kate,

    As a person who beliieves it is best to always be true to yourself and communicate honestly and directly, I think its the only way to be and even though there have been moments where I probably can seem too forceful I think its way better than beating round the bush and playing silly games.

    As adults we need to be able to be less defensive, subjective and reactive to information, as it is not usually a personal issue but the relaying of information from a differing source. Surely this enables us to grow???

    There is nothing worse than the convoluted methods some people use to communicate and in the end its like a crazy game of trying to work out what they are actually trying to say.

    Upfront and to the point is not only easier, but every persons aboslute right.

    Every one of us has the right to have our say and express our opinion, and those that take offense are not listening nor respecting that right. We dont have to always agree but we do need to hear what others have to say. This does not mean that person is wrong and we can always agree to disagree. Not listening devalues another person and also is extremely discourteous.

    Listening to differing opinions and views allows a greater perspective, an insight and understanding of the ways others think, and encourages us to be better people in the long run. People who value the input of others and can even learn from them.

    The only aspect of being so direct is that I have had to learn that tact is something I have needed to adjust about myself, so that when i am direct I dont seem aggressive but more assertive – hahahaha. My aim is never to offend, (well not always!) so over the years it has been an area that I have worked on.

    Be who you are, say what you feel, and live by example. Afterall communicating is a 2 way street, otherwise whats the point???

    As a mate of mine sdays, “Welcome to the dark side – we have cookies”!!!!!!!


  4. You are doing fine Kate and only you can be the best judge of yourself. As a carer my fathers dementia has changed a lot of things in my life. At the end of the day, I need to be able to look at myself in the mirror and feel I have done what I could to the best of my ability. You can’t please everyone. I hope you still have time to do things what makes you happy. I had to shelve a lot of things but I am slowly introducing a new perspective in my life. Life is too short. Best wishes.


    • Thanks Cynthia… as a person diagnosed with dementia, I have ended up speaking out about things that I and many others feel are not working well for us. Time to smell the roses, well, these are my roses now. Best wishes to you as well.


  5. Hi Kate
    I remember when I was working and had been interviewed for a higher band, on the feedback I was told I didn’t get the job because I was too honest. I could have told them what they wanted to hear but told them the truth instead. how can you be too honest. I still continue to say what I think is right regardless. We need to speak out while we can for people with dementia because if we don’t nobody else will.


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