I’m often asked for a various lengths of my bio and this is one version I gave recently:
Kate Swaffer is a published academic and author, an international speaker, an activist, and a dementia and aged care consultant; she is a retired nurse, has a Masters of Science in Dementia (Distinction, 2014), and is a published poet. Kate is the only Australian to be a full member of the World Dementia Council, is a board member and the SE Asia Regional Ambassador for Alzheimer’s Disease International (ADI), and is the current Chair, CEO & a Co-founder of Dementia Alliance International (DAI). (2017)
I also consider myself a generous and kind person. But just like you, I (and DAI) have bills to pay…
Having basically been plagiarised again last week, this time rather blatantly, I have decided it is time to post this blog. Maybe I should be flattered or take it as a compliment, but really, being ‘published’ in the Guardian (a re-write of my own articles on language and my list of 20 things not to say to people with dementia), under someone else’s name is mildly annoying.
Part of this particular blog had actually been sitting in the drafts folder since receiving a quote in a comment a while ago on one of my blogs about not working for free by Susan Macaulay. Being plagiarised is similar to not being paid for your work, in my humble opinion, and would not be allowed in academia, so I am not sure why magazines or newspapers allow it. Anyway, do consider subscribing to Susan’s blog if you don’t already, as her personal experience of supporting her mother with dementia, and her willingness to speak up even when what she might say ensures she receives a bit of pushback, is refreshing. Susan is a fellow poet, and her poems are poignant and beautiful.
My quote above (in orange) has also been inspired by Susan’s reply to anyone who asks her for her expertise. She gave me permission to use hers verbatim, but I have modified it to my own circumstances. This quote is one is one I found on Google.images.com, and I have seen versions of it posted at art shows as well.
To me, it is extraordinary that people are happy to automatically put their hand in their purse to pay for new clothes, shoes, haircuts and colours, new furnishings in their home, travel for holidays or weekends away, attend conferences for their education, pay other consultants, expect to be paid themselves for their own work, but don’t yet want to pay people with dementia, and many other advocates in this area, a reasonable fee, or indeed, no fee at all.
For example, many times I am asked for advice to set up new businesses, dementia programs, help with speeches, provide an ‘expert consumer voice’ and so on, (consulting) and some even offer to visit me in Adelaide from interstate or overseas (yes, they are prepared to pay for their own airfares, accommodation, and sometimes ask for days of my time), without also offering fee.
Last year, I had a research team ask me to run a half day focus group, including find the 12 participants, set up the questionnaires, and report back on it, for no fee, and when I politely asked for a fee (actually, a donation to DAI), they offered $50, even though their institution was willing to spend approximately $15,000 on flights, accommodation, food, and other expenses like funding a venue for me to run it. Surprisingly, I declined the offer.
Perhaps I am unrealistic in wanting fairness and equity for all?
In the case of wanting advice from people with dementia, in most cases, because people without dementia can continue to ‘use’ this cohort by getting it for free from newly diagnosed people, it is going to be a constant issue, and with a new person diagnosed every 3.2 seconds somewhere in the world, that is relatively easy to find someone willing to re-engage with life. We almost all experience having our lives pulled out from under us at the time of diagnosis, so being asked to be involved is often exciting and gives us meaning and purpose in our lives again, also a reason why many advocates find it hard to pass the baton.
Like everything that needs to change, unless one person stands up to it, it will never change.
Call me brave, or call me stupid, but I remain willing to continue to speak up about this issue.
On this particular topic of fairness and equity, I also find myself more than dismayed when people who are employed or self-employed, and then register to attend DAI’s webinars as unpaid care partners, or worse, as DAI members (people with dementia), when we make it very clear the registration is an honour system, and our educational webinars are DAI’s only source of regular revenue. Last month, we made the event FREE for everyone so people didn’t have to be dishonourable and 96 people registered.
Thankfully, DAI earned $29 in donations from the July Webinar, and DAI is extremely grateful to those people who made donations.
It might be of interest to know though, that the monthly Zoom subscription DAI pays is double that amount, and currently, we are all sometimes even self funding some of DAI business operations. DAI’s online monthly educational webinars are always on topics of interest to the whole dementia community, with a range of impressive speakers from around the world. These speakers are in demand globally, and can command large fees to present or consult, and DAI is incredibly grateful they so generously give us their time and expertise for free.
However, many of the professionals who attend our webinars would be willing to pay registration fees to attend conferences, sometimes in excess of $2500, plus travel and accommodations costs, just to hear them, and DAI provides this education for as little as $10-40 USD. This month, we have reduced the Webinar fee for our DAI August Webinar “Dementia 101” by A/Professor Low to $20.00 for professionals to see if we can earn more than the donations amount totalling $29… Only time will tell.
For a long time, we were being bombarded with staff from a number of different Alzheimer’s organisations, many of whom I knew personally, who were registering for our webinars as unpaid carers. After private discussions with one of the CEO’s who agreed a corporate rate might resolve the issue, DAI then set up a Corporate rate for each month, allowing 10 staff to attend for $300 USD. When I sent this news to that particular CEO (remember, he had agreed it was a great way to resolve the situation, and preferable to DAI naming and shaming staff to their managers), he then said, “no, we would not be interested”.
Truly, some days I wonder where most of the stigma is coming from, or is it the loss of power and control of the money holding others back from supporting DAI and people with dementia being independent? Maybe it is even the fear of what people with dementia can actually achieve on their own, or in a group? There really is big money in dementia, and from the outside looking in, it seems others would prefer DAI or people with dementia not to have any of the money, nor any control of it.
There are so many interesting PhD projects I would love to supervise, just in this blog alone!
Motivation for me to get back to my own studies next year actually, as currently, I am not credentialed enough to be more than an advisor to another PhD student…
Susan Macaulay says at the bottom of her poetry pages: ©2013 – 2016 Susan Macaulay. I invite you to share the links widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.
I invite everyone to do the same with all of my writings, not just my poems…