International Day Of People With Disability 2023

@Patchworks

That's what I said!
I said this in my application for a disability committee at my workplace. Then I ended up being interviewed by my company and was the was face of IDPWD... But it's progress right?

But for me, I now (didn't previously) identify as disabled. If we lived in a society where basic needs weren't so bloody expensive I probably wouldn't. But I can't afford to live in this society because I can't work as much as what is required to afford a roof over my head and food to heat (let alone electricity, internet, a car) I rely on my partner to provide for me (and before it was my parents). I can't work standard hours; I need later start times, shorter hours because otherwise I get migraines. I have chronic fatigue as well and if neither of those are managed then my depression flares up too. So combining all my "medical issues" I physically cannot do what other people can. According to the UN, which Australia is part of, disability is defined as:

Persons with disabilities include those who have long-term physical, mental, intellectual, or sensory impairments, which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

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So that CERTAINLY covers me. I can only work sporadic stints and generally have to limit my activity because I just don't have the physical capacity to more. I have had recurrent episodes of depression since high school which have also severely limited my ability to engage in long term employment or complete tertiary education. What's super annoying though is my health is episodic but also chronic. So some days I'm fine, others I can't do a lot but it's been fluctuating like this for my entire adult life. When I was working fulltime, I was getting migraines several times a week and didn't have the energy to anything else - luckily my mum was able to cook dinner and do all the housework. Then when I wasn't working at all I'd get them once a month. As soon as I go back to working they flare up again. But (on a non migraine day!) I look, behave, work, drive and can interact just like everybody else.

I dunno, I think that there should be more support in society for people who have partial capacity to work and episodic disability - like with depression. And I think now that organisations (maybe not NDIS though sadly) are moving away from that total permanent "medical" thing that can't be fixed or cured definition of disability to the barriers people encounter that stop them from being able to participate in society in an equitable fashion. The Australian Network on Disability has some good resources.

Hopefully one day we won't even see people as "having disabilities" but just see people and automatically give them the accommodations they need.

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But yeah, there's constant references to impairment and permanence on that webpage you linked to. I have no 'impairment', going by the definition on that page, and my need for assistance (be it through the NDIS or anyone else) shouldn't be permanent. I just need help getting in to a worthwhile life, and then I should be more or less right, assuming it's done properly. That's not to say I won't need to come back for help later, if things should fall apart; but I wouldn't consider that to be "needing support under the NDIS for my whole life."

So it begs the question of where people are supposed to go if they need NDIS-type support, but only on a one-off, or temporary basis.

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@chibam oh yeah, this is the bane of my existence, especially with Centrelink 😒

Hi @MissMuffet I really like everything you've said there. My illness is chronic and episodic too so over the years I've used all forms of leave when I'm too sick to work, including leave without pay.

I've read that the approach of the NDIS will be functional limitations not diagnoses yet I still don't understand how to convey the episodic limitations well. I'm in the process of applying for NDIS and it's my only shot at it as a support service is helping me and I don't think I could do it on my own.

I'm interested to read the content at your link you shared, thanks.

@MissMuffet I can imagine. I wonder how much talk/exploration there is about this problem and solutions to it, in all the reform talk surrounding the mental health system and NDIS?

I'm sorry I don't have more clear and definite answers for everyone, but I feel like the fact that there are a few of us struggling with this issue of not having a clear definition, or definition not matching up with experiences highlights how much of an impact this gap has. One thing I think is really important though is that it's okay for the amount of support you need to change along with the impact of the issues/ impairments/ disability you might live with. I wonder if it's about the systems that serve us catching up to these understandings?

Semi related, sharing this in case it's valuable or validating for anyone 😊.

@Patchworks, that is a tough one! In case it helps, we covered NDIS, disability & MH on a Topic Tuesday early this year here. I'm also aware of the World Health Organisation Disability Assessment Scale (WHODAS) which may serve as a useful tool to help explain your limitations. One other thing to remember is that unfortunately, NDIS kind of operates in that medical frame, so in my experience, the best results are more likely when you frame everything as you are on your worst day (remembering in the course of doing so that it is your worst day you're describing, not necessarily your everyday).