That’s the message from, as she described herself, our newest ancestor. The disability community lost Alice Wong this weekend and while I cannot profess to have known her or even followed her closely, I know her impact is massive and she will be greatly missed. If you’ve been around here at all, you’ll have […]
This is my life
How public health shapes “reasonable”
A personal Facebook post of mine from 6th May 2021: I know some people like that NSW doesn’t do lockdowns, and my personal dislike of their Premier aside, what I wish people understood about the value of lockdowns is that it protects at risk people. If the government says it’s safe, the at risk […]
Work isn’t everything
People are so into “work is the only valid way of humaning” that they overlook how much jobs can disable you / make things worse / put you into constant flares and so on. It can be healthier for some people to not work. Work has been bad for me in the past. […]
Tips on codesign for organisations
As you know, I have thoughts and feelings on codesign. But I came across this research by DANA and thought I’d share the points that felt most important. Important to me basically means the points that I’ve seen disability organisations fail continually to do, or do well. Most of my feelings are organistion -> individual […]
Assing Upmtions
Assumptions, that’s what this headline is saying. I just really wanted to focus on the ASS bit because this is all about a divide which I think is bullshit. The divide between “disabled” and “disabling health condition” has been growing and I feel like it’s about to escalate wildly. There are so many […]
The problem I have with self advocacy
Being forced to advocate for yourself is a form of outsourcing. And it’s unpaid, exhausting, and often emotional exertion. Systemic issues could be fixed by those in power, but it’s quicker & easier to say we just didn’t try hard enough to advocate for ourselves. Demanding that we self advocate also means the […]
The periphery of being a writer is more profitable than being a writer
There you go, I said it. Gasp. The periphery of being a writer is more profitable than being a writer. The thing that annoyed me the most about this was some social media advertisement for a SPECIALIST writers notebook for $60 or something (naturally, discounted from $90). I don’t even know what […]
Who gets to talk about energy?
I’m beginning to really dislike it when famous or rich people talk about saving energy, because when those of us who are genuinely limited in energy talk about it, we don’t receive the praise the famous and rich receive. When I talk about things like needing a trip out of the house to go […]
NDIS support needs assessment process feedback survey
I’m planning to document and collate more of my advocacy on this site. Mostly so that others can use my words as a template to save them energy (though my words are never perfect nor are they the only words you can use). I’ll collect the links on one page eventually but for now they’ll […]
The media only shares best case ME/CFS stories
In April 2025 a story about ME/CFS was in the mainstream media. You can read it here. It was a good, relatable story. One quote that stuck with me was “a graceless manager who refused her request to work some days from home because it would be ‘unfair’ to her team”. Because OOOOOF […]