Note:found this as a draft: Only published it 25/11/2024 but the published on date is correct. It is probably incomplete
It's always an honour to be asked by an organization to become a Board member or Advisory Panel member to be "a voice" with "lived experience". And it is indeed empowering to meet with powerful people and get an insight into how decisions are made "at the top". But after a while you begin to wonder.
I volunteered on Boards for decades. It began when I became the sole parent of an autistic child. Most carers find it impossible to retain their careers so many turn to volunteering in order to remain useful members of society. Initially I found volunteering to be stimulating and empowering until I began to wonder if I was allowing myself to be taken for granted and exploited.
Bottom line, I now find myself to be an age pensioner who cannot even afford my medical bills.
They like to say "Time is Money" in business. But it's your time, their money.
Now that's a wake-up call.
Don't end up like me at retirement!
Think of the metaphor of "The Boiling Frog". They say if you put a frog in water and up the temperature very very gradually, it doesn't notice before its too late. Result: one dead boiled frog.
So don't be mad at me because I am now scrambling to commodify myself before its too late.
It would be great if you shared your experiences in the comments, either in your own name, or anonymously if you are worried about exposure
And then let's see where it goes.
Boiling Frog Image Attribution
https://www.flickr.com/photos/
https://www.flickr.com/photos/
65694152@N08/5983908269/
5 comments:
Thanks for this Judy. I'm in transition period finishing studies end of this year. I've been thinking about starting volunteering in 2021 / trying to get into advocacy.
This is something I'll have to think about.
I feel like in the advocacy space a lot of the work is unpaid or for exposure but if people want to learn, what we're doing is teaching and teachers get paid so to me it doesn't make sense when big organisations don't pay.
Judy,
I am glad you are raising this point. I receive about 10 requests a week to give talks, presentations and seminars, not one has ever offered to compensate me. I am, of course, happy to be involved in supporting NGOs, fledgling charities, parent groups and state schools. However, I am often asked to speak at events in which the organiser is charging attendees significant fees, and at which I strongly suspect other speakers are being paid.
Now that I am an author and becoming better known in the neurodiversity space, I feel that I add a certain level of credibility and legitimacy to the events I take part in, especially since I am a neurominority and have lived experience. What I find troubling is that well funded companies and organisations that profit from these events expect me to give my time and expertise for free; an arrangement that means they gain the most from the relationship. Mining the lived experiences of disabled people for free, while profiting from them, is the anti-thesis of inclusion and yet, many of these events are about fostering diversity and inclusion. It is a dichotomy I struggle with.
I propose that the neurominority community collectively join forces to create a set of guidelines and a compensation scheme so that our services, our opinions, life experiences, insights, and advice are viewed as a commodity that has a monetary value, rather than something to be mined and exploited for free by organisations and corporations that use our voices to legitimise their inclusion and diversity initiatives, but treat us as second class citizens by failing to compensate us for our contributions.
- Siena Castellon
7 tireless years of service, advocacy, writing, 1000s of emails, before I was valued enough to be invited to the conversation. And sometimes that's only because they know I have a following -- not for my worth. And even when I volunteer hours and hours on committees and at conferences, I still can't get equal representation for our people. Not to mention being shut out of Autism Round Tables that have mostly Caucasian males who are not autistic leading 'their' cause about us. Here is my latest piece:https://everydayautistic.wordpress.com/2020/10/22/nothing-about-us-without-us-the-neurominority-dilemma/
Time is money and when I'm giving my time, I'm not earning money, but I am losing time so I expect some form of compensation. After all, I am working with them, consulting to them. There has to be a benefit to doing the work as there are many other valuable ways I'd like to spend my time. I think through the costs and benefits to me of accepting the invitation, as well as the value that I offer in comparison to someone else.
Sometimes I do give my time for free, as the issue is particularly important to me and I'm happy with the chance to raise the issues as well as my profile in the process. That may bring more paid work to me, or not. Other times, I will ask about what they're offering me to do what is essentially consulting or collaborative work with them.
Ongoing work must be paid, unless it a time-limited opportunity to learn something new, giving me skills and knowledge that I can trade on later. This may include an initial appointment to a board to build my credibility, but once I've demonstrated my value I would expect further benefits of value to me, else I'd move onto other activities that I value more.
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