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Why I nominated Kate Swaffer for a University of Wollongong alumnus award

Kate Swaffer has just beaten stiff competition to win the social impact category of the University of Wollongong alumni awards this year.

It was with pleasure that I, with no encouragement, independently decided to nominate Kate for this award.

On the one hand there are a few outstanding people advocating on behalf of people with dementia, an enormous heterogeneous group around the world.

These include individuals in the UK who are right at the forefront of policy decision making now and explaining in conferences what living with dementia is like and what they expect from services and research. But there is a growing band of people around the world who are also contributing diverse views, and together they build up a big picture.

So to isolate any one individual can be self-defeating, when they are all worthy of gratitude for the amount they put in.

I rarely make nominations, so I should like to feel that when I do so I mean it.

On the other hand, awards can be misappropriated for the marketing of organisations with a bottom line heavily involved. But taking a holistic perspective in the round, I think as a society we should appreciate people who are doing excellent work for the public good. We may not always agree on everything, but, to coin a phrase, a lot more unites us than divides us.

Part of my nomination request reads as follows:

“Kate Swaffer has most definitely demonstrated a hugely positive impact on both community and society. This work will have far reaching sustainable and enduring effects on the perception of dementia as well as the prestige of the University of Wollongong for very many years to come.

Evidence of impact is wide-ranging, I feel.

She lives with dementia, but this fact alone is barely to scratch the surface of her brilliance. Kate Swaffer is now Chair, CEO and co-founder of Dementia Alliance International, as well as Chair of the Alzheimer’s Australia Dementia Advisory Group. Within this year, she became a Member of the World Dementia Council, a remarkable achievement in itself as this is a board with highly restrictive membership with outstanding leaders in innovation in dementia service provision internationally.

Kate has also become Board member of Alzheimer’s Disease International, which means that she lies in an extremely pivotal position in the intersection of major stakeholders in dementia at a global level. As you will know, she is an Honorary Associate Fellow with the Faculty of Science, Medicine and Health, University of Wollongong. She is currently a Ph.D. candidate under Prof Jan Dewing and Associate Professor Victoria Traynor at Wollongong, proposing an autoethnographic study of dementia narratives and their ownership. As an academic in this field myself, I have every confidence that Kate Swaffer a remarkable and unique contribution to the academic field. She is in addition a trained Chef and a retired nurse, and these elements to her life can be felt, I feel, also in her almost daily blogging. This massively promotes wellbeing in society at large.

As a humanitarian, an activist and advocate for people with dementia, a published author, poet and international speaker, Kate Swaffer, in her own words, is now “living beyond a diagnosis of younger onset dementia” and came up with the elegant construct of ‘prescribed disengagement’ ®. Kate Swaffer is essentially someone who has refused to be ‘defeated’ by the supremely modest expectations of clinical professionals, in that Kate has kept her aspirations and ambitions at an outstanding level.

I should also like your panel to note further that, since my original application, Kate was a SA Finalist in the Australian Of The Year Awards 2016, winner of the 2015 National Disability Awards: Emerging Leader in Disability Awareness, winner of the 2015 Bethanie Education Medallion, and winner of the Stirling University 2015 International Dementia Leader Award. These, I submit, are clear examples of leadership, particularly in world recognition that dementia is a disability for which enablement is an obligation societally and legally.

As you will know, Kate Swaffer was also a plenary speaker at the World Health Organisation First Ministerial Conference on Dementia in Geneva in March 2015, the first person with dementia ever to have given a keynote speech at the UN World Health Organisation. Kate, I understand, still maintains close links with policy professionals in the World Health Organization.

And finally – Kate’s professional and research interests include quality of life and human rights and disability rights for people with dementia, stigma, discrimination and language in dementia. The SA Dept of Health produced a staff training DVD featuring her story. Her blog has been archived in the PANDORA collection of the SA and National Library, and is used extensively as an academic resource around the world. Her first dementia book “What the hell happned to my brain?: Living beyond dementia” was released in January 2016 by Jessica Kingsley Publishers in London. Her second book about dementia, co-authored with Associate Professor Lee-Fay Low, is to be released in September. I have constructive knowledge of feedback from people living with dementia, citing that the book has been instrumental in providing hope.

One person wrote to her stating that,

“Isn’t it amazing what some education, advocacy and peer counselling can empower us to do?””

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