The other day I posted on LinkedIn about ableism in universities as a staff member. A friend then sent me a link to a research survey on that topic, knowing I would have a lot to say. And I did. I filled it in, I explained how badly my needs were treated in my last job in the university sector. Overall the survey wasn’t bad, I’ve seen many worse, but it was full of assumptions.
It had questions about pushing through, managing my disabilities, advocating for myself, getting supports and so on. It all felt like individual responsibility where the purpose of the survey appears to be about university responsibilities / treatment of staff. I’m fairly confident they asked these questions because a goal will be to create training for disabled staff on things like “self advocacy within universities”. But I’m utterly tired of a bunch of assumptions built into this: that pushing through is safe, that all disabilities can be overcome with accomodations, that supports are available and useful for all disability types.
To me, it felt like the survey assumed a very palatable and not too disabled version of disability.
I wrote out some feedback on the questions and considered sending it to the survey authors. But I’m not sure if I can be bothered to send it. Maybe I shouldn’t have filled in the survey to begin with.
I just can’t work out where I stand on sharing my voice anymore. I also can’t afford to share my voice for free. I need proper financial compensation for all this labour people seem to expect from disabled people.
It’s also getting harder to share my voice because consultations are very performative, not just within disability either. Look at the fucking debacle of the hate speech laws recently passed – consultation was open for an implausibly short time, they probably didn’t read any of them before just passing the laws, the submission portal didn’t work, people didn’t know they could just email submissions… if that wasn’t a classic example of performative consolation I don’t know what is. And it feels like everything is going that direction. Aka completely ignored.
At the same time, it feels incredibly wrong to not try. To not submit opinions where solicited, especially to government. Because, unfortunately, disabled people have more contact with and impacts from the governments decisions than non disabled people do.
I don’t have an answer because it all feels like a muddy shitheap.
When I say I can’t work out where I stand on sharing my voice, it doesn’t really mean I’ll shut up. It’s just that I’m not sure who is listening. I’ll likely always share my voice on here. Less on socials because I despise making social-first content and I don’t give a shit that people (and platforms) are anti clicking through to a site. I said a few months ago that I was going to focus on organising some of my work from 2025 so that others can use it as needed, and maybe that’s my contribution to the world this year.
Back to a disability specific angle, I just don’t know if the choice to spend my energy on fighting things matters. It genuinely doesn’t feel like it matters. And while I may have only been louder about this stuff in recent years, I’ve been fighting people who tell me my needs are wrong for my entire life, and I don’t want to keep fighting. There are a limited amount of things I can do in a day and when fighting gets me nowhere, why should I spend my very precious, very very limited energy on it? Disability stuff all feels designed for needs that aren’t mine.
I disagree with the focus on capacity building.
I don’t always describe myself as an advocate.
I think a lot of self advocacy is basically a scam, especially when people say it has to include loss.
Why am I part of working in and writing about disability?
I don’t like the way you may get listened to, but only if you’re a palatable disabled person with the “right” credentials.
I don’t agree with and I don’t like much of the disability sector. And while I get sick of lending my voice, it also feels wrong to shut up.
I don’t have any answers. Right now, I only have confusion and frustration, and I doubt I’m the only one. I don’t know what my plans for advocacy will be in 2026.
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Hello Vanessa,
that’s pretty much it…I just wanted to say ‘hi’ and that I’m enjoying your writing.
I’m not even sure how I got here (your page/blog) probably a game of link-football.
Due to recent (past 5 years or so) physical & mental health issues I have come to have some* insight into disability and how it is seen (more often hidden), accommodated for in our communities.
I’ve felt the disdain of service providers (yes I had to go the Centrelink route, very reluctantly) all coated in appropriate language learned in many workshops, I’m sure. Yet disdain just the same, mostly that you don’t fit an easy pigeon hole…no, I don’t know my ultimate prognosis, nor exact dates when I can return to the land of ‘normal’.
In this time I’ve also learned the limitations of some friendships…you’re now ‘no fun’, lazy even.
Anyhoo, my small insight into a world of the ‘not normal’ has been a huge learning curve and I am so much more aware of the daily struggles of those with permanent disabilities.
Thanks for your work 🙂
* I’m very aware this insight is a gift and comes from a privileged position, and I apologise for any ableist language
Hi Lena, thanks for stopping by to say hi. That disdain can really sting, can’t it? I think that’s what got to me most the last time I was job hunting. It was never really the outright dismissals and stuff, it was the little “oh” said in THAT tone that wears you down. Glad to have you here 🙂