Lived Experience Forum

[TideisTurning]

Hi Everyone, 

I wanted to create this space here ahead of International Day Of People With Disability this Sunday, 3rd December. This is a day to acknowledge, honour and celebrate people with disability and the vital and invaluable contributions they make. In saying that, we also want to recognise, acknowledge and honour that for some living with disability, it may not feel like something to be celebrated as much, and that’s completely ok too. All perspectives and experiences are valid and important. The definition of disability, and how people identify with it for themselves will be different for everyone. I believe though, in accordance with the social model of disability, that disability can relate to and include mental health issues, because of how an individual living with mental health issues can, at times, the disabled by them.

With that in mind, I wanted to highlight one IDPWD ambassador particularly whose experience of disability may be more closely aligned with the disability experiences of those living with mental health issues, and this year's theme; United in action to rescue and achieve the Sustainable Development Goals (SDGs) for, with and by persons with disabilities. Part of this theme is striving for a world that is better and fairer for everyone. My question for all of those who'd like to share is, what would be needed to make the world better and fairer for you, especially in terms of disability/ mental health issues? 

@Patchworks @Appleblossom @Shaz51 @Adge @chibam @MyLife_MyWay @greenspace @Sanity23 @7cough9 @JaneyC @Alanawww @tired_sisyphus @AuDHDpug @NBB @yitty @still_bookish @Sophia1 @StuF @Cheekymonkey @Clawde @Spirit_Healer @greenpea @Anastasia @Judi9877 @tonys @BPDSurvivor @pinklollipop15 

[Patchworks]

For me I'd like to have equal opportunity for employment and move away from Monday to Friday 9 to 5 and allow flexibility to start early or late. Flexible work location would help too eg hybrid work from home and workplace on different days.

[chibam]

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@TideisTurning wrote:

The definition of disability, and how people identify with it for themselves will be different for everyone.

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Honestly, I am so turned-around on this issue, I don't know where I am; or where anybody else is, either.

How can we communicate as a society, when everyone is writing (and playing by) their own individual rules for the English language? I'm not religious, but it genuinely feels like we're all living out that Tower of Babel story from the bible.

And I think that the significant consequences of all this confusion are very easy to see. The government doesn't seem to have any idea what's it's doing with the NDIS, and I think a large part of that is because nobody can agree what "disabled" means!

I was misled (in good faith) some time ago into believing that I ought to make a submission to the Abuse of Disabled People Royal Inquiry, because the definition of "disabled" had become so vague, it had expanded to include me. Which, if true (and I still have no idea whether or not it is true), is really absurd, since I am not - nor have ever been disabled; and my problems are neither disabilities, nor disability-related issues.

Yet I'm increasingly hearing that the sort of help I need is the "psychosocial service" that apparently can only feasibly be accessed via the NDIS, which I doubt I could access even if I felt comfortable trying to access, since I'm not disabled!

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@TideisTurning wrote:

My question for all of those who'd like to share is, what would be needed to make the world better and fairer for you, especially in terms of disability/ mental health issues? 

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• Better and more dedicated efforts towards initiating and nurturing positive & strong social relationships - particularly romantic relationships.
• Efforts toward helping people find new households (note: not new houses i.e. the soulless boxes of bricks & mortar; new households - made of people, friendship & love)
• More job opportunities, and greater focus on assigning jobs to the unemployed - with due considderation of the life & career aspirations of the unemployed person.

I can't answer from a "disability/mental health" perspective, since I'm not disabled, and whatever "mental health issues" I may have arise as a result of these unsatisfied need, not as the cause (or a contributing factor) of them.

But if we want to make the world a better and fairer place; these things need to be done.

[tyme]

Thank you for sharing. We appreciate hearing the points you have raised @chibam 

Oh, and about the psychosocial supports, I had a psychosocial support worker for quite a while. I didn't and don't have access to the NDIS, and I struggled with mental health back then, but it wasn't so much a 'disability'. 

I can't remember the name of the service. It was free for me to access and it was part of my discharge plan out of area mental health because I was doing so well.

Maybe there are psychosocial supports you can access?

[chibam]

I just checked Yellow Pages again, @tyme , as I do from time-to-time. "Psychosocial services" for my area only seems to have two listings; both of which are for psychology clinics. One seems to now be permenently shut down, and the other makes no mention of psychosocial services on their own website.

It's a very hard service to track down, IMHO, and even then I don't know if the therapists/helpers involved would have the right contacts to actually help me.

[tyme]

I honestly can't remember the name of the service. It was an acronym for something. I will have to ask around @chibam . Sorry I couldn't've been more of a help.

[chibam]

@tyme  Also, I apologize if my earlier post came off as antagonistic, hostile, or disrespectful.

But there are definite problems arising from this modern trend we seem to have of reinventing terminology for everything.

It causes me a lot of difficulty, and sometimes I get a bit wound up about it. Maybe I need to calm down a bit about it and talk more gently; but either way, the problems are still there.

[chibam]

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@tyme wrote:

I honestly can't remember the name of the service. It was an acronym for something. I will have to ask around @chibam . Sorry I couldn't've been more of a help.

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That's okay, @tyme . 🙂 I'm not even sure "psychosocial services" would do me any good, or would even be willing to work with me. I'm only going on vague impressions from what others have said that they might be what I'm looking for.

[tyme]

Hey @chibam , I didn't find that at all. I just wish I had answers for you. As you probably know, things have been very different for me where I gained a lot of support from the MH system. However, I acknowledge that's not the same for others, and I'm open to that. 

I just want what's best for you. 

I also wanted to let you know that we appreciated having you on the Peer Group Chat this evening. 

[TideisTurning]

Flexibility is really important @Patchworks, absolutely! It can make a huge difference to have a little more autonomy in the flexibility of where  and when we might work, for example.  Similarly, as a service  user, the flexibility offered by telehealth can make supports more accessible for me at times!

@chibam, I hear you.  These are some great suggestions for what's needed to make the world feel better and fairer, but I think you also really importantly pointed out that things might need to go back to step further in order to establish a shared definition of what disability is to start with. It can take on different definitions in different contexts, which makes it super confusing.  I can remember working in another mental health and disability service when the NDIS was first starting years ago, and there was a lot of confusion and challenge caused by not having the way mental health and mental health issues related to disability in the context of NDIS clearly defined. While I'm now a little more removed from this, I am told the definition of mental health related to disability in the context of NDIS has improved since then. Perhaps not enough. In case it's helpful, for yourself and/or others reading along, there is more information on how NDIS defines disability, including psychosocial disability (like mental health) here.