Dementia and disAbility

It’s an Interesting time in dementia advocacy, and I’m currently witnessing a lot of justification or rationalisation that the last 2+ decades of advocacy have been worth it.

In part because of that, I have been reading lots of my old blogs, just to see what I have previously thought and said about things, and I am also interested how much my thoughts and opinions about some things have really changed, or on some topics or issues, how much more strongly I feel about some now.

In terms of the label of disability, it was good to be reminded how people like me, who were once able bodied (whatever that really means!?) but who now have ‘acquired disablities’ due to dementia, may feel, when they first hear this term applied to them.

Most tell me they see the word disability as another negative disempowering label.

As it’s day 17 of Dementia Awareness Month, I thought it might be useful to review dementia as a disability.

The World Health Organisation states dementia is a major cause of disability and dependence in older persons worldwide.

In 2011, I started to write about my experience of becoming disabled, and it has been interesting to me, how I initially rejected this term, including writing a bog called, Does the word disability increase disAbility?.

For some years now, I have really embraced the label of disAbility, as it has helped me fight for the rights of people with dementia! Clearly, a selfish pursuit…

Let’s all, long after Dementia Awareness Month, find ways to ensure we ACT on improving the lives of people with dementia.

New organisations, new foundations, new alliances or coalitions are not the answer. It’s time we all worked together.

Surely.

8 thoughts on “Dementia and disAbility

  1. In 2015, participating in a fantastic training about people with disabilities, the trainer started with a phrase: “We all have some type of disability”. That looked aggressive … But it’s true! I don’t see well! Am I less person just because I can’t see well?!? I think not! I have feelings, I have a family that I love, I have dreams, I breathe … I am a human being! What is the difference between me and a person with dementia? That is the question … We are all different. But uniques, following the same path. We all have different needs, no matter what our specificities are.
    I have worked with many people with dementia in the past few years and I am very grateful for that. I learned a lot about myself and how I would like to be treated when I’ll have dementia (because I will have … if I’ll live long enough). So … let’s think about it. Because we live in the same world and we will all have to deal with it. Let’s “put ourselves in others’ shoes “and be human !!

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    • Well said Natercia… although unless you have a heredity likelihood of dgettign dementia, getting older does not mean you will get dementia, In fact, even at the age of 85, apparently less than 50% have dementia.Kx

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      • Oh… yes, of course Kate.
        When I say… “because I will have … if I’ll live long enough”… I mean… if we face that possibility it might helps to understand. I don’t know if I have a genetic possibility, because my father passed away very young. Not trought my mother (I think)… she’s 83, several cronic deseases, but she’s still working (she’s a nurse) and she’s very energic (sometimes more than me)! 🙂
        But my focus is to learn and transmit as much as possible that a person with dementia is the same person before and after the diagnosis, with a life history, with rights, with feelings… just with a few more needs… just that! I’m studing Social Gerontology and my researsh is about the impact of residentials/nursing homes envoironement design on people with dementia in Portugal. So… I realy hope to contribute to change some minds about this subject. We must work to change many wrong actitudes because I realy belive that a Residential Home can be a true home not a “deposit to death” for older people with or without dementia.
        Thank you very much for your time.

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    • Yes, yes, yes! Well said Natercia!
      People with any ‘disability’ (which is all of us, isn’t it?!) ALWAYS have capacities and abilities – we must insist people focus on those instead of the negatives (and why, in fact, do they want to focus on the negatives – what is the motive here?).
      Let’s ENHANCE what we can do – for all of us – not be dragged into thinking of what we can’t do. It is such a dreadful way to think about LIFE!

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