In late 2024 a few organisations were doing surveys regarding the creation of foundational supports. As someone who needs supports but presently gets no supports, I filled in as many as I could. I found my words in one particular report (this one).
When I first read the report, I got really excited because I thought “OMG someone is saying exactly what I think!” and then I realised that person was me (the report doesn’t cite names which is fine).
I was quoted in the executive summary:
“I feel like lots of gov[ernment] disability is based on intellectual disability e.g. face to face, build skills slowly. And that may be ideal for that cohort. But I feel like we’re all being forced into that model and that does not represent my needs.”
I know this one was me because it was late and I was too tired to type out the entire word government.
I really didn’t (still don’t) feel comfortable with saying these words because while I don’t see any condition as better or worse or more deserving or less deserving (your needs are your needs, it’s a neutral thing to me), too many people might read it as a comparison thing; but I also felt like the example really highlighted the situation. I did run it past a friend after who said there’s a difference between a “who has it worse” approach and pointing out that a disability services designed for one need won’t suit every need. I hope people appreciate that the latter is the spirit in which I wrote that statement. I think I’d find a way to reword it in the future because the risk of misinterpretation makes me uncomfortable, but those are the words/example my brain came up with late at night when I was doing the survey.
It was only while doing this survey that I realised how much I hated being forced into a capacity building approach, something reflected in the executive summary: “Many respondents also disagreed with the government’s focus on individual capacity building.”
To be honest I can’t remember if the next one one is me or if I just said something very similar. Either way I’m highlighting it here because non-disabled people telling us what we must desire pisses me off. Socialising is incredibly difficult to the point of impossible for me, so the mere concept of forcing it on me when it makes me crash is dangerous:
“Any attempt to build my capacity tends to result in backwards steps. Participation in the community (as much as it seems a desirable thing) is always detrimental to my functioning.”
This one was definitely me (though many others probably said a near identical thing):
“I don’t need to be taught how to do things. I need someone to do them for me.”
And I like the way the report puts it: “For many, the focus on skill-building was seen as inappropriate, as it assumes a skill-deficit which they don’t have.”
A general important point which is largely ignored by both the healthcare system and most organisations: “This includes implementation of COVID-safe practices, particularly in healthcare settings, to ensure individuals with compromised health or severe symptoms can access care while minimising additional risks.”
I don’t know why governments seem unwilling to understand that disabilities have disabled people. That if you want to increase the capacity of people with energy limiting conditions, maybe don’t have a peak body (RACGP) who basically call us crazy, and instead, invest in some actual research for our condition.
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