Obviously, I jest. I don’t use the money I make from Patreon for candy (if I did it would be strictly peanut M&Ms, and everyone knows they don’t count. I make bad jokes when I’m nervous. Do I seem nervous to you? Anyway…)
I continue to feel weird about Patreon. On the one hand, it’s an incredible tool and I am so grateful for its existence. I am grateful for every single person who uses it to support me. It’s not pocket money for sweets; it’s income I can’t live without.
I value my work, and it means more than I can say that others do too. This website is a thing I do that A) Helps to keep me sane, and B) Hopefully helps others who are in my situation to not feel as alone, and C) Helps others who are not in my situation understand a little more about what it’s actually like to be a sick beneficiary, amongst the many other things I am. These words are emotional currency.
I have fought a lot in the past when people wanted to help or support me. It was one of the biggest things I’ve had to learn since I got sick – that sometimes, you need help, and that doesn’t make you weak. In fact, asking for and accepting support makes you strong. It forges connections. It brings people into your world with you. It keeps you going in a way that moves far beyond money.
The jerk voice in my brain likes to nag me that Patreon is just a formal version of charity, and people do it because they feel sorry for me. Well, I’m not buying that. That narrative doesn’t value me, my work, or my patrons. It’s bullshit. I’m doing my best not to listen.
Another voice whispers that I’m not delivering enough. That my supporters are tired of hearing about my health and WINZ and feminism. But that’s also untrue – and if they were to feel that way, there’s nothing forcing them to stay.
So that just leaves the voice of gratitude. Which is a good one, but it’s still not the full story. My gratitude implies that I’m getting something for nothing, and that this is a one-way financial street. Just as patronage of the arts has worked throughout history, this is about so much more. I’m not simply providing content for a fee. I’m trying to build and maintain a community.
That’s kind of a big ask, when you’re sick like me, but I am really committed to it. I think the people who support me know that, no matter if that support is the sharing of my work via social media (which I appreciate immensely), responding to me when I publish things, or being a Patron.
Eventually, I’d like to stop writing about WINZ and illness. It takes its own toll, and stopping writing about those things would maybe indicate that they are no longer primary forces in my life. But that’s not my reality at the moment.
As I shared recently, I’m going to try applying for the Supported Living Payment. I fully expect to be denied again. I haven’t even begun the process, and I’m already frustrated beyond measure. Despite WINZ’s insistence that you can do everything online, I couldn’t make an appointment for doing the application. When I rang the call centre, they informed me they can’t make appointments for the local branches, so I’d have to wait for the branch to call me. The branch called when I was at physio and left a message telling me they’d made me an appointment for “Job search support.” I tried to change the appointment online, because I won’t have the supporting paperwork I need by the time they booked me in. I couldn’t change it, so I called, and was informed again that the call centre can’t make appointments, and why couldn’t I make that time? I said I needed to gather paperwork, and I enquired as to why the appointment had been designated as “job search” when I’m applying for the SLP. The person informed me that, at their end, the appointment is listed as SLP. I just sighed.
I can’t tell at this point whether all these issues are human ones or technology ones, but the fact I can’t even get an appointment without this sort of stress is a real worry. It doesn’t bode super well I asked the call centre what documents I needed to bring for the SLP application, and was informed that, because they have me on file, I only need to bring ID. I absolutely call bullshit on that right now. There is no way I’m going to walk into that appointment and apply successfully for the SLP without a shit ton of evidence and supporting documentation. And I really don’t want to be sent away to get it and have to come back. It’s exhausting.
Oops. I didn’t mean to go on that rant! I guess this is a bit of an insight into the sorts of things I’m dealing with every day. On top of being in constant pain, on top of physio appointments, doctor appointments, rheumatology, trying to write enough to stay alive – this is the stress I face.
That’s why Patreon is even more important. It’s an income that I know can’t be ripped out from under me in the same way the benefit can. Yes, I can lose patrons. Yes, it’s not completely reliable. But it’s something I work hard for and it comes back to me, as opposed to something out of my control.
So, thank you. To everyone who supports me in this way. It means so, so much. It means everything.
As an IT professional and a web tester I cannot believe that technology cannot handle either the making of appointments anywhere (calendar? Not rocket science right) nor getting consistent, accurate information to those who need it (staff and clients). I can only assume that those responsible don’t care (i mean those who specify, design and build systems). How much money is wasted by ridiculous producer-led practice as making an appointment without asking when the client/patient/whatever is available (hospitals do this too). Then you send a message to say you can’t make it: they then arbitrarily send another you can’t make etc etc etc. One day someone will surely start from the right end – a customer journey and adapt processes to suit humans. Yeah, right. (Actually I have hope having seen the work Brenda is doing)
Rant off. Thank you for writing, thank you for letting a privileged white guy understand a little of how shitty the system is. And please use a little of the Patreon for chocolate- it’s good for your health ;).
Can we pay in Peanut M&Ms?
Peanut m&m’s are the business though x
I’ve been told in the past that the reason you can’t book online is because it can only book up to 2 weeks (which is always booked out) and then you have to ring.
Imo WINZ is the single most bureacratically inefficient system I’ve ever encountered.