Blogging: an autobiography in progress

speak upSaul Alinsky wrote:  “We learn, when we respect the dignity of the people, that they cannot be denied the elementary right to participate fully in the solutions to their own problems. Self-respect arises only out of people who play an active role in solving their own crises and who are not helpless, passive, puppet-like recipients of private or public services. To give people help, while denying them a significant part in the action, contributes nothing to the development of the individual. In the deepest sense it is not giving but taking—taking their dignity. Denial of the opportunity for participation is the denial of human dignity and democracy.”

A colleague and young friend sent me the quote above this morning (thanks SB), with this comment: “I thought it was really powerful and thought if you had not come across it already it might be something you could use in your writings about the importance of empowering people with dementia and ensuring their inclusion in all levels of discussion about issues and service, support etc that effect them.

People with dementia are still being left out of many of the conversations and events about them, and although this is changing, it is only changing slowly, and for my liking, far too slowly. It seems the many people without dementia who have been used to telling others, and us, what it is like for us, what is best for us, and how we cannot be included, often because we don’t have the same capacity as others, are simply loathe to give up their positions of power.

It is of course, a lot of the reason I speak out about living with dementia, to ring to light the stigma, discrimination, isolation and other negative experiences of living with dementia, as well as attempting to break down some of the other myths, including the one that we can’t live well with dementia.

Megan Washington, a young iconic singer from Victoria was interviewed about her TEDx talk on a program I watched last night, where she revealed she has quite a pronounced stutter. Paul Grabowsky, a fabulous jazz musician, said when interviewed about her talking about her personal and terrifying challenge of stuttering, “it takes courage… And I wondered at the time if she realised how she might be helping a whole bunch of people… and to see someone, anyone really, who’s got a challenge get up and talk about it publicly, and take that challenge head on, that’s got to be a great example to people.”

This resonated with me, and is part of the reason I write so candidly about my own experiences, not just of dementia, but in life. I have always loved reading autobiographies, and so, I suppose, blogging about one’s own life is really just an autobiography in progress. And if it helps someone, even just one person, then how much of a bonus is that… Megan’s TEDx talk has apparently helped hundreds of people who stutter. How cool is that!

Watch Megan’s TED x talk “The thing is, I stutter” below;

15 thoughts on “Blogging: an autobiography in progress

  1. Kate – that’s the reason why “support groups” can help some people. Sure, they’re not for everyone, but some people really like them. I couldn’t imagine not being part of the online groups I’m a member of.

    • Really glad they work for you… although dementia support groups don’t for me, I can’t bear seeing the deterioration… whereas in other support groups, one more often sees healing… I’m better with action or writing x

      • Kate – I totally agree about the dementia support groups. I once went and did a tour of a nursing home, and I absolutely hated it because I didn’t like seeing all the residents with dementia. I’m a member of support groups like chronic pain, encephalitis, brain tumour etc. There are very few if any posts that are unhappy – they’re all just seeking information and support.

        That’s the reason why I won’t get involved in anything to do with dementia – no forums online, no advocacy etc. I couldn’t do what you do Kate – not at all. In fact that’s why I do the advocacy that I do on dying with dignity.

      • Mostly my conbtact and advocacy is with researchers and clinicians, so quite removed from the reality of dementia, my way of helping, wihtout being too confronted… I have great challenges in support groups too. I admire you for advocating on dying with dignity, something I get a little involved with on the sidelines… xx

  2. Nobody knows what we need better than ourselves.

    It is a strange phenomenon that once a person is diagnosed with dementia, those around them, caring for them,suddenly think they have the right to take over, disregarding the person and making gross assumptions relating to that persons lifestyle.

    Yet another wonderful blog Kate that more people need to share with everyone who knows or cares for a person living with dementia.

    No one has the right to assume or think they can make choices on behalf of another. Maybe if more people listened they would realize the answers they seek are right in front of them,

    So many people complain that they don’t know what the people they care for need to live life to the fullest – maybe they should just ask!!!!!

    Leah.xx

  3. Hi Kate, great post and share. Thankfully I don’t have a stutter as my singing is apparently excruciating! My father did but he managed to get over the worst before I was born, but my mum explained how hard it was for him. Ted is a great resource, full of inspirational things like this. Unfortunately, I haven’t had as much time to watch it since I got involved in our local wind farm campaign and the MOOC at UTAS. Steve

    • Thanks Steve… and yes, I don’t get to watch too many TED talks these days, unless they are highlighted in some way… but when I do, often find them empowering and interesting.

      • This has inspired me to create a new set of posts on my blog related to things that inspire me as an antidote to the insanity we seem to be increasingly faced with in the modern world. I have shared this talk as my first post in this category and given you a deserved citation. Hope you don’t mind.

  4. Yes. These are the same reasons I blog and share my experiences. I believe those of us who are gifted with the ability to express ourselves in ways that touch other people who are perhaps gifted in other ways but unable to articulate their thoughts and feelings have a…hmmmm…duty? no… obligation….no, not obligation either… but there is some responsibility I think. We must use our gifts, whatever they might be to make positive change in the world. That’s my belief.

    Likewise, I believe we each know what is best for ourselves and our journey. One of the most shared posts on my own blog is a bit of a rant about unsolicited advice. The post is really about telling people who think they know how to run other people’s lives to think again: http://myalzheimersstory.com/2014/04/13/an-open-letter-to-everyone-who-knows-what-i-should-do-before-i-ask-them/

    Great post and love the TEDx talk too.

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