I once wrote about the expectation to always be trying. And I stand by what I wrote. But I’d like to go into a more fundamental issue on the topic of “trying”.
The people (including disabled organisations, governments who assess us for benefits & supports etc) who don’t understand that
A disability cannot be solved by trying
If it was overcomable (technical term) by trying, then it wouldn’t be disabling.
If something is genuinely doable for a disabled person in the way it is for a non disabled person, then it has to be able to be done any time, any amount, without temporary or permanent impact to the person. (I’m aware some governments have specific language about this in their rules – I’m also aware they ignore these definitions – but I’m not here to parrot a government definition. This is a personal blog, sharing personal opinion.) Effects can be things like the harmful side effects of masking (not the N95 kind) and PEM. I’m sure there are tons of other examples too.
This whole topic is why my pinned post on many social platforms is:
I’ve experienced {symptom}
and
I’ve been disabled by {symptom}
Are two very different things.
If people could understand the difference between experiencing something and being disabled by the same something, we’d have a whole fucktonne more disability literacy in the general public.
I’ve been in some of the “design” sessions for foundational supports. It left me with the feeling that all non NDIS supports are going to be generic, in person, synchronous sessions where a non disabled person stands up and asks disabled people (or parents of disabled kids) if they’ve tried, like really tried, to not “let” their disability disable them. And can you try again, for me? Because I inherently don’t believe you’ve tried, because, like, I could do it.
To be fair, it’s not just foundational supports that make me feel this way. In a former job, back when I could still work on-site, they rearranged the entire floor and put my desk by a noisy thoroughfare. I told them that was an awful place to seat me if they want me to concentrate on work. I was told to “just try it”, as if I wasn’t someone who had been working in offices for literal decades by that point.
There’s a large amount of patronising, paternalistic, and overall disrespectful behaviour that appears as soon as a disabled person tells a non disabled person what their needs are.
The power imbalance needs to change in favour of the disabled person (because we are experts on our lives). Unfortunately, governments worldwide seem to be swirling around to do the opposite of this, attacking us and assuming disabilities are minor things and that we don’t want to try our way out, the way non disabled people can. I’ve been saying this a lot on social media, but it’s time to put it into a more permanent place: Look at all the countries roughly equivalent to Australia: New Zealand, USA, Canada, UK – all have had attacks on disabled people by their governments in recent years, and ongoing.
I’d like to be wrong on the foundational supports scenario that has been playing in my head for about a year now. You have no idea how much I want to be wrong. But recently, I just haven’t been wrong. I can see the layers of policy being built to be hostile to disabled needs.
And yeah, all of this has me a bit down at the moment.
I won’t be trying for you. I will never try for you. I will do what is safe for me, what is wise for me, and what suits my complex intersection of needs.
