We all have bills to pay…

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…

16 thoughts on “We all have bills to pay…

  1. Hi Kate, I am quite surprised when people offer to ‘pay’ me for a talk I am doing as don’t expect it, as it happens so rarely. I always ask that they pay for my travel cause that can mount up after a while. Mum always tells me to take what is offered. I am sorry to hear that plagurism has been done to your work and I had no idea when I shared that Guardian article. Keep fighting the good fight as i always do, or try too xxox

    • Sleep well, and I look forward to the discussion! One thing you and I could never be accused of, is boring or not willing to have an opinion!!! Oh, and we can still be friends, even if we disagree, which is a beautiful rarity. xx

      • Kate,

        First of all, thanks for the links back to MyAlzheimersstory.com and my poetry – yay!

        On the issue of plagiarizing, and other forms of stealing people’s stuff, I fully agree with you that it happens with regularity, and I find it more than a little annoying – it makes me really angry. On two occasions, I’ve had blogs that have stolen my content (i.e. cut-and-pasted it from my blog to theirs word for word without credit) shut down. More information on how to do that here:

        http://www.ecreativeim.com/blog/2011/12/report-stolen-content-to-google/

        Equally, I’ve been unsuccessful in bids to get people to stop stealing my content; however, I believe it’s worth a try.

        The first thing I always do is to contact the person/site themselves. For example, http://www.alzheimersweekly.com/, which essentially exists by lifting other people’s content and regurgitating it, removed my stolen content after I sent them a threatening email.

        I learned that my content was on their site because Paul Collins copied and pasted it from their site onto his blog, which I follow. Some bloggers erroneously think it’s okay to “re-blog” other people’s content because of the reblog function on WordPress.org.

        As you know, reblogging on WordPress.org takes a portion of the content from the original blog and pastes it onto your blog with a link back to the original content. This reblog function does not exist on WordPress.com blogs, but, because people are accustomed to reblogging without understanding how it works, they think it’s okay to copy and paste blog content from one blog to another, and so they go ahead and do so.

        On the other hand, I have also experienced seasoned, experienced bloggers taking my content – in particular my poetry – and copying and pasting it onto their blogs. That’s why I have the note you mention at the end of all of my poetry. Of course it won’t stop the really unscrupulous from going ahead and copying it anyway, but it might make some people think twice and not to it.

        I understand all of this is not the case with The Guardian article to which you refer. However, that said, they have quoted a few points and then linked back to your original article, which, in my view, is acceptable, particularly as it may result in driving traffic to your blog and building your subscribership. That would be a good thing. How did you find guardian link? Was it from looking at the back end of your blog to see where referrals came from?

        On a related theme, cross-linking between blogs such as you have done in this article to my blog, and I have done on my blog to yours is a good way to build on strengths, collaborate, increase traffic, and provide users with additional get information and a better experience. Everybody wins. Over the last 2 1/2 years, 275 visitors to your blog got here via one of several links to your blog from mine. I understand that you have tens of thousands of followers, but every little bit counts. Plus, links into your blog increase its importance in terms of search engine optimization (SEO). The higher the traffic on the sites that the incoming links come from, the better. So a link to your site from The Guardian is a good thing for your SEO, even if it doesn’t generate additional traffic via the link.

        I’ve also had “professionals” steal my workshop content. In one case, a geriatrician in California took my content and used it in one of her own workshops. I discovered the theft when I saw a picture of the poster containing the content posted on her Facebook page as if it were hers. We were connected on LinkedIn, so I wrote and asked her to remove the picture from her Facebook page and to stop using my content in her workshops. She was completely unapologetic, even after I asked her for an apology. AND she has the gall to sitll make comments on my posts on LinkedIn. When she does, I remind her of the fact that she stole my content and still hasn’t apologized LOL. It gives me some modicum of satisfaction to point out that while she thinks highly of her expert self, the fact remains that she’s a thief 😛

        Here’s a funny story: when I was a public speaking trainer in Dubai, I had a client for whom I been doing workshops for two years ask me to reduce my price by 50%. I came back with a counter offer, which they declined. Then they told me that they’d had another supplier who had given them his workshop content so they could deliver it themselves, and could I do the same? Imagine! I was so stunned I hardly knew how to reply. It took me several days to formulate an answer…

        Which brings me to your belief that people are doing this because you have dementia. As you might guess from the above, I don’t think it has anything to do with the fact that you have dementia. Because I don’t have dementia (or at least not yet), and I’ve had many similar experiences to the ones that stick in your craw.

        However, I would agree that a better approach to problem solving in dementia care and healthcare in general requires the inclusion of all stakeholders, particularly those who stand to be most impacted, that is the end users. I find myself frustrated and thwarted at every turn with respect to gaining the ear of decision-makers, researchers, care providers, etc. who seem, as you rightly point out, mostly uninterested in hearing the views of care partners, both those who live with dementia and those who live with those who live with dementia. As in all things, there are exceptions of course, but they remain exceptions, at least until we succeed in changing the world. We must never give up hope, or the fight.

        On the issue of donations, and payments: I am not cheap, and I don’t understand people who are. There’s not much more I can say on that, other than again, I don’t think it has anything to do with dementia or stigma. It’s just a sad fact of life that some people don’t understand the concept of value, and a whole whack more simply lack integrity.

        On these points I agree with you 100% without reservation: yes, no one could ever accuse either of us of being boring or without opinions; neither are we afraid to express them. And yes, we can still be friends, even if we disagree. We are indeed rare birds. ☺

      • Why am I not surprised you had somehtig to say on this topic as well 😉

        The lack of integrity of people continues to astound me… and you are right, it is not only people with dementia being used and abused, but all ‘consumer’ voices, and many others too. I’ve become involved in the Dignity Disability Party here in mystate, and find peopel with all dosabilities often have similar experiences too.

        From DAI’s perspective, one day, I truly hope people who can afford to, especially professionals working in the dementia sector, will pay for our excellent webinars too; that more than anything in my blog annoys me the most… xx

        ps as you know, stats, SEO’s (whatever that means) and traffic is not why I write…

      • A perfect example arrived in my inbox today. Here’s my post:

        http://myalzheimersstory.com/2015/04/19/20-questions-that-help-explain-why-people-with-dementia-get-agitated-and-physically-aggressive/

        And here’s the stolen content:

        https://www.agedcarereportcard.com.au/hellocare/understanding-frustrations-agitation-person-living-dementia/

        Clearly, this person thinks it’s okay to steal someone’s content if you include a link back to their site. So now I will send her an email asking her to either change or remove the post. Let’s see what happens…

  2. Brilliant blog, very apt. In plain language these people are liar, cheats and thieves. See I was able to say it without swearing.

  3. yes, stunning to say the least, there are so many entries of people into the markets that they call for a ‘quick tip’ not once thinking of the expense one has gone to in supporting others and their own education, business or lived experiences need to count for something. I fully support you and would be more than happy to assist setting up a fundraiser with you for DAI. xx

The only thing missing in this global conversation is YOUR voice... Thank you.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s