Saul 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”.


Kate Swaffer lives in Australia and writes a wonderful blog, Creating Life with Words: Inspiration, Love & Truth, about her life and journey living with dementia.

“I write to stay inspired, to share my thoughts, to remind me of who I really am, and to keep tabs on my life, my thoughts and my philosophies so that later on, I can remember what it is I was thinking or doing. I am creating my own memory bank. For me, the acquired habit of using social media such as Facebook has brought with it a discipline of making the effort to communicate! “