Double standards

A few weeks ago I presented at an event as an opening keynote speaker; when my agent asked for a speakers fee, they were advised there was no budget for this. I agreed anyway, as believe it is important to talk about human rights, and to represent DAI. However, disturbingly, during one of the breaks on day 2, a colleague working for a large service provider asked me had I been paid as a speaker. She was more than shocked when I told her no, and the reason I had been given, and then assured me most other key note speakers had been paid. I followed up with the conference organisers, and was told the other speakers had been paid a ‘stipend for their time’.

My time and expertise is valuable, at least to me, and obviously to the many who continue to ask me to join their Boards, Expert Advisory groups, or present at their conferences and other events. However, it seems to many that a person with dementia is still a tick box, and obviously not adequately valued. Until organisations are willing to pay for our time, as they do for all other experts and consultants, then nothing has really changed.

In fact, in 2017, these double standards are hurting us (people with dementia) much less than they are starting to hurt those organisations who refuse to treat us equally. It is becoming very negative PR for them. It is partly because I am a professional that I have not named and shamed them in this blog, but to do so, would also mean naming the others, and that would mean a blog listing at least a thousand others…

26 thoughts on “Double standards

  1. It is incredibly frustrating and I do sympathise. Hope you put all this into a letter or email so that whoever was responsible or accountable doesn’t think it went unnoticed or unchallenged.


    • I’ve been doing this with many orgs for some time, this one included, well before I published this blog. Hopefully the message will get through one day, or maybe the passive stigma is so entrenched it will never change. Only time will tell…

      Liked by 1 person

  2. people with dementia are dismissed all over the world. Until the experts accept living with dementia is no more than just living with a right to be treated equally nothing will really change.


  3. I can’t believe that you’re being taken advantage of so much. And I’m sure it happens with other speakers from minority groups like DAI. Maybe all the advocate speakers like you should get together and chat quickly about it ….. and get together and as a group expose them!! 😦


    • With a new diagnosis every 3.2 seconds, the organisations will always find a new ‘consumer advocate’ who’s ‘green, and delighted to suddenly feel valued again’, they will be willing to do it for free. 😢😢 That does not mean I won’t keep speaking up about it, one day probably even naming and shaming them.


  4. Thanks for sharing Kate. I respect your sense of professionalism but if this organization was dishonest and exploiting you I think it would be appropriate to call them out. At the least I hope everyone is on notice, no more ticking boxes!


    • I’ve called so many out before… still no change. It’s only because I have some faith the new leaders will rectify this I’ve decided to stay silent on naming. Only time will tell. Of course, aback payment of a stipend for my time would help…


      • Kate, do you keep track of those organizations that normally pay stipends, but not for you? If so, do you follow up to ask what is their payment policy? Make clear you are not demanding payment, just trying to understand their policies.


      • Hi Phil… I do keep track, and regularly follow up. In fact, I often do ask for payment, and when I get paid, that money goes towards DAI, which is partly how we have funded DAI.


  5. I am horrified to read this, Kate. It is another piece of awfulness that makes me want to make a difference in how people are treated.


    • It is so ‘normal’ for these orgnisations! Almost always, new ‘dementia advocates’ don’t see it happening, as they are so pleased to suddently be asked to be in the media or to present at an event. From apathy, isolation and discrimination, to being asked to do anything (for nothing) seems, initially, a better and positive option! In the end, we can continue to sell our souls, but when our dementia deteriorates, or as happened to some friends overseas who have not, they were dropped, as ‘they make it look bad for those not doing as well’! Until my very last word, I will continue to speak out to change this…


  6. It’s the same as asking a professional photographer to take some photos for free or for a charity and they will tell people about your business or in my case spend a couple of years fundraising for a charity and when it came to getting on the Board was told “I had no skills they needed” but I could keep fundraising as a volunteer for as long as I liked …. disgraceful


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