I repeat: “Please don’t call us sufferers”

DAI SufferersDuring the recent ADI2014 conference, it was apparent the language being used by researchers and other presenters to refer to people with dementia is still very derogatory, stigmatising and discriminatory.

Now really, do any of these people look like they are suffering, or like they are  victims?! It looks more to me like we are meaningfully engaged, in the real world, and having fun. I know this to be true, because of course, I was there!

People with dementia are learning to live well with dementia, and one of the goals of Dementia Alliance International is to give a voice to, and to empower others with dementia, to live well to. We will publish articles on many of the issues we are facing, written by people with dementia, rather  than by those without dementia, who choose to write or speak “about us,without us”.

It is no longer appropriate for this to happen, and a brilliant blog written by one of our co-founders and Board members, John Sandblom yesterday speaks about this too. John wrote: “We are just changing in ways the rest of you aren’t, we have increasing disabilities and the sooner it is looked at that way instead of the stigmas, misunderstandings and complete lies the better for all of us living with dementia. We desperately need others to enable us, not further disable us!”

I hope we reach our goals and dreams before we all die, but it is important to live as well as we can until then, and as Richard Taylor rightly says, “we are going to die most likely because of dementia but guess what, all the rest of you are going to die too”.

Live every day as if it is your last, just in case it is…

I also often say;”being diagnosed with dementia is not as much fun as your birthday party, but there is no reason to die now”.

 

17 thoughts on “I repeat: “Please don’t call us sufferers”

  1. Pingback: Sufferer Part 3; The Linguistic/Communication Issues | Truthful Loving Kindness

  2. Hi Kate,

    Your words totally resonate with me and so do Richard´s. I just want to say thank you for your courage and your wisdom and for sharing all of it with us.
    I mentioned this post today on our Moving your Soul Facebook Page, I hope you don´t mind.

    Love
    Susana García

    • Hi Susana,
      Of course I’m honoured for you to add it to the Facebook page, thank you.
      And thank you again for translating the Dementia Alliance International cards into Spanish, they were very much appreciated by the locals attending ADI in Puerto Rico.
      Much love, Kate

  3. Very inspirational discution and strengthening assertions…these are certainly not the sentiments of a person suffering.

  4. I guess I missed what YOU wish to be called. How should I describe my wife, who was diagnosed with Alzheimer’s in 2005 at the age of 54 and is now in hospice, to my Members of Congress when I demand more money for Alzheimer’s research. “Victim” seemed pretty appropriate because I’m pretty certain that she never planned to be totally dependent on others by the time she was 60. “Relabeling” doesn’t change the disease… only a cure – or even a TREATMENT will! That will require more research and THAT will require more money and WILL change the world.

    • I guess I’d like you to call me Kate… we all have our own experience, and if being called a victim or sufferer works for you and your wife, then that is of course, your absolute choice. I choose not to accept such disempowering language, also my choice. There is nho sign of better treatment and definitely not a cure on the horizon, and so empowering people with dementia to live as well as they can for as long as possible is important. Everyone suffers from something at some stage in their life, but do not have to become ‘sufferers’…

    • Hello, as with most issues concerning language and the use of symbols to represent human beings – it’s complicated. Yes, in a sense we are victims-we didn’t ask for this, we didn’t do anything to deserve it, we don’t want it. But, also yes portraying us as poor victims or just plain victims portrays us as individual who have little to no control over the quality of our lives. Yes, such may be the case in the latest stages of the symptoms. Yes, for all those not in that state of their disability the word victim and sufferer leaves me, and many others I’ve spoken with, feeling that others see us as having no control/influence of our own lives, the quality of our lived lives, the essence of our own human wants and needs. Yes, portraying or focusing on us in the end stages presents to others a clear and compelling case for others to do something to help us – like donate money or support/petition the government to spend more money on a cure/prevention. I feel others are using my life as a reason to support spending which I don’t necessarily support, and no one ever asks us if we want to be placed in that situation. If Dementia is accelerated old ageing of a brain, if it is typical but exaggerated, if it is not truly a disease in the sense that one second you don’t have “it” and the next second you do have “it.” if the answers are yes, then we need to come up with a new way to talk about this withouht inadvertently stigmatizing already stigmatized people.

      Perhaps I am biased, but I believe we should err on the side on no more stigmatization, rather than err on the side of loaded words and characterizations which we know when we say them are intended to create pity, and misunderstand into who we fundamentally are when we use these words. For instance telling/reminding everyone that everyone with dementia is gonna die…..this is true but it supports the belief that we are from this moment forward fading away. Hells, bells everyone is gonna die, but we don’t go around reminding legislators of this fact when we are promoting food stamps, or defense spending or whatever. It’s a powerful statement to make, creating strong emotions, a desire to prevent everyone with dementia from dying of dementia, but the diagnosis itself does not shorten or extend our lives one day. We are still gonna die, be it in an auto accident in ten minutes, or from dementia in ten years.

      Because this issues of stigmatization is sometimes subtle, almost always unintended, and now so easily ignored, the means do not justify the ends.

      Richard

  5. Here here Kate! Language is decisive in creating reality. It is so great that this conversation is being driven by people living with dementia, like yourself. Great blog! Would you mind if I share this one on my page? I’ll link it to you and your blog, of course. Cheers, Genevieve

  6. Completely agree I never refer to people living with dementia as sufferers. I find it incredibly frustrating that I have been misquoted describing people with dementia in the local press as sufferers and I also know that the organisation I work fir never refers to people with dementia as sufferers in any press release, however when the story is published it then calls people with dementia sufferers. So frustrating and you are right it is disempowering.

    • It is as you say, incredibly frustrating that the media insist on calling us sufferers… I was interviewed recently for an online newspaper, and said it was not to be used, then it was, so I asked them to take it down unless they changed it! Thanks for your support.

  7. Speechless…what a thought provoking article. It is vital that we strive to bring our strengths to our communities so they can understand that we are still valuble and capable folks. Love the ‘Kindred Spirits’ and shall suggest that we rename our dementia support group a possible name such as this. Thankyou both for your insight.

    Myrna

  8. ello, I have always felt the use of the word sufferer was more appropriate for caregivers than for folks living with dementia. They project it on us, because they, themselves feel so bad about what is happening to us it cause them to suffer. They feel that way because they are thinking “the person I love is dying right before my very eyes. They are fading away. They will soon no long recognize me and become shells of themselves.” Those kinds of internal conversations create feelings of awfulness ness, pain, and suffering.

    I have never met anyone living with dementia who complained of physical pain. There is sometimes in most of us psychic or psychological discomfort which may be exaggerated in some to be suffering for a moment or two, but that is all. We know in some part of us we are processing the world differently from others, and this knowledge adds to our feeling of being alone, of sadness. It is going down the wrong road to call this suffering. It as you say, further stigmatizes, increases the suffering in caregivers, and causes more people to engage with us less because we are suffering, even if it is in silence.

    It is time to stop calling us sufferers. Coincidentally enough most of these exaggerated emotional charge d labels are frequently a part of fund raising efforts. Efforts that exaggerate our lives in order for others to feel their fears of becoming like us and then donate to various cure or end alzheimer’s campaigns. Unfortunately focus group research and increases in financial support for cure funds seem to show this works. But, do the means justify the ends? Does further isolation and stigmatization of a group of folks now labeled “victims” justify fund raising for some yet to even be imagined cure?

    I think not. You decide, then act accordingly.

    Richard

    • Hello my dear friend Richard, as always, we are on the same page, and I completely agree we are portrayed as sufferers and victims, as that gives the charities the best chance of receiving funds! And, we do not have to accept those negative labelling terms.. Take care my wonderful friend and kindred spirit, and together, we will change the world, I have no doubt (at least, today!!!), Kate xox

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