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Disability Royal Commission rant

This is beginning to annoy the hell out of me.

Especially since the focus at the moment is something that has directly affected me since I was diagnosed (and honestly before in some cases)

 

Like there'll be this huge revelation that took weeks or months to find out. And everyone will be shocked and act like it was this huge secret that was finally uncovered.

And I'm sitting here just thinking that I could have told them this stuff and saved everyone a hell of a lot of time.

 

Like autistic people need better mental health care? No s*** Sherlock.

They're shocked that doctors treat disabled people badly? Well someone hasn't tried being a disabled patient

Disabled people are sent to random organisations rather than actually being treated? Yeah that's happened to me at least five times so far. It's nothing new.

 

These aren't revelations. If people bothered to listen they'd know about them long before now.

I feel like instead of saying "It's been revealed that..." they should be saying "So we finally listened to disabled people and turns out..."

 

I hope it bring about some positive change. But the process is just so frustrating.

 

 

And just as a side note I'm not "living with autism". It's not a bloody housemate.

I am Autistic. It's a part of me, not some unfortunate accessory. 

Idk, I really prefer person first language.

And this trend of trying to separate the person from their disability suggests that there is a need to do that, like there is something wrong with being disabled.

Like they're trying to be sensitive but they're just continuing the same attitudes that create half these problems.

 

Urgh.

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Re: Disability Royal Commission rant

@Tiny_leaf  it was the same with the mental health royal Commission if they had listened to people this whole time they would already know, and after all that they have done nothing to improve the mental health system, same with climate change everyone keeps just saying ‘so it seems there is a problem’ but not doing a single thing about it and pretending we haven’t known about said problems for decades. It is very frustrating. 

 

As for all the language issues I find it frustrating that people who are not the ones with the issue keep trying to decide how to talk about the issue I always think these sorts of things need to be lead by the community that they are about but yet again we have people who don’t have said issue trying to tell everyone else how to talk about it when again they could just ask the disabled person/minority/disadvantaged person. Like I understand wanting to be clear that there is more to someone than their disability but I also think sometimes it is a big part of them and saying that no one should notice it is not very helpful. 

 

I mean you don’t say I am someone living with a face you say I have a face and while yes it is not the only part of your body it is still their and people shouldn’t ignore it. But idk it is hard and I think it depends on the issue and personal preference for how you like to look at it. Some people hate saying they have X so who knows. 

Re: Disability Royal Commission rant

@Eden1717 I'm glad I missed the coverage for that, it probably would've been even worse... 

Just a heap of old people going "depression exists!!! How did that happen?"

 

I think your face example is a really good one. I also kind of love the idea of a serious news presenter being like "this will affect millions of people living with face" (they always use the singular for some reason).

 

For me it's like saying I'm queer, rather than a person who lives with a queer identify. 

Idk, I'd rather just.. accept that I am autistic (and queer) rather than trying to pretend that they are somehow separate to the rest of me.

It just seems a lot healthier to learn to respect that part of myself rather than ignore/ hide it, because there's nothing to hide.

 

That reminds me of how an autism organisation (with no autistic people in it) asked people for their experiences, but then banned them from using person first language or capital A Autistic. Smiley Frustrated

 

 

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Re: Disability Royal Commission rant

Hey @Tiny_leaf @Eden1717 

 

Sounds like you have not been listened to or heard, and that can be a very frustrating thing to go through. The voices of people with lived experience is so powerful and I am glad you have shared yours <3 

 

 

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Re: Disability Royal Commission rant

@Tiny_leaf  It was mostly about how people are not getting services and how existing services are mistreating and harming patients. It was also about stigma in the system and how basically the system is really screwed up. Nothing has been done or changed. In my home state it has gotten even worse. 

 

I think autsim is a hard one because it kind of lies on the border (in public perception) between mental illness and learning/development/social disability. And because it is so complicated and varied in people it can be hard for people to understand it. Not to mention when autism and other mental health/learning issues are co-occurring which is fairly common. But I think generally speaking people also seem to see autism as a deficit more than a strength and it is hard honestly as a person who has a close family member who is autistic and has some spectrum type issues myself (not enough to warrant a diagnosis but mostly sensory issues) I can see it as both. My family member is very kind and thoughtful and has some really great qualities but her autism which has been left without help due to her being in her 50’s as it ‘’didn’t exist’’ then, makes even having a conversation with her exhausting and difficult for us as her family. 

 

She he doesn’t see that there is any problem and is unable to look at anything from another persons perspective but her difficulties with communication and social issues means she is unable to find work and doesn’t have any friends. She is very caring and we love her but not being able to have a conversation makes it very hard, she isn’t non verbal she just can’t really understand jokes or if you say anything it is taken literally and she has some different opinions that she sees as facts which she gets very angry and defensive about if you try and hint that they are not really accurate. I understand she hates being not taken seriously beshe was bullied badly in school but I find it hard to talk to her. 

 

Idk what the answer is but I think it can be very difficult to know how you should interpret something that is multifaceted, I absolutely don’t think anyone should feel ashamed about a disability but I think you have to balance the impact on the individual who has it and the people around them as well.... and while I don’t think it makes it right sometimes I think the whole ‘’living with’’ vs having thing comes from people who live around disability trying to find a way to tolerate and still feel love to a person they see as a kind of burden. So they say it isn’t the person it is their disability because it creates a distinction that makes it easier to care for someone who may not be able to ever be independent. 

 

I dont mean to place any blame or say that people with disability don’t deserve support they absolutely do but it is hard for everyone and it isn’t fair to anyone to have to not fit into a fickle world that isn’t designed to support everyone’s basic rights and that is exactly the problem this is the thing the government is supposed to step in and help with so that no family member has to be a career so that people can just live their lives and contribute in their own way. Idk I hope I am not offending anyone I don’t mean to. 

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Re: Disability Royal Commission rant

@Eden1717 oh...

"It was mostly about how people are not getting services and how existing services are mistreating and harming patients. It was also about stigma in the system and how basically the system is really screwed up."

Yeah that's been most of my life for the past three/ four years.

They seriously needed a royal commission to find that out?

 

I think autism is a developmental disability but has some features which are similar to mental illness. Idk, as someone with both they just seem totally different.

 

I know what you mean, but for a really long time the focus has been almost exclusively on the carers, especially in cases of carer abuse. The problem is when abuse is blamed on the victim for being disabled and therefore a "burden".

That being said there is a ridiculous amount of pressure on carers, but I feel like the problem is lack of services rather than someone's actual disability.

I feel like changing public attitudes around disability is a really good step to both help empower disabled people, and to remind people that we do need and deserve services, both of which will take pressure off our carers.

 

Sorry if I seem a bit sensitive, I know what you mean but I've just seen too many cases of disabled people being hurt just for existing as we are, and I feel like reclaiming the language around disability is a really important part of stopping that whole cycle.

 

Anyway good luck interpreting my somewhat senseless rambles! Smiley Tongue

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Re: Disability Royal Commission rant

@Tiny_leaf  I know they didn’t need a royal Commission they could have just spoken to anyone who has been in the system. Or read the complaints that were submitted to the hospitals and other agencies. 

 

I get they are different I just mean the general public doesn’t seem to know much about either so they seem to often get confused. 

 

That is what I mean if there were enough services to support people then the issue of families and careers would not be a problem. Like no one can help that a person is disabled but if the government were to provide enough services so that the disabled person could function as best as they can then there wouldn’t be so much tension and guilt and exhaustion among both the disabled person and their careers. 

 

I think the problem with the career abuse issue is not entirely separate... I think the problem is that most current services are directed to help ease the burden on careers which is needed but if they directed services to giving disabled people more independence or the ability to advocate for themselves better then it would be helpful for both sides. 

 

Changing public perception is also very important but it seems to happen so slowly. 

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Re: Disability Royal Commission rant

Hope you both don't mind if I chime in on this. First off, thanks for expressing your thoughts on the Royal Commission. You both pointed out how frustrating they can be and I respect how you have both articulated the issues around not listening to people who encounter services every day and the complaints/feedback they provide. We share your hope that services will receive the resources they need to support all people with a disability in the community and their families, friends, carers and supporters, to live their best life. 

 

I also wanted to acknowledge the varying experiences and perspectives being shared here. In terms of being someone with autism and caring for someone with autism. Both feelings and perspectives are valid and we are happy you've felt able to express that here. ReachOut encourages these kinds of conversations as they are an opportunity for us to express our feelings/life experiences and learn from each other, while also being mindful there are also 10s to 1000s of people who will also read along this conversation too. 

 

It's a complex discussion that you're having but we did want to give a gentle reminder to ensure that we are thinking about how our language could be interpreted to others reading on. While the community continues unpacking what contributes to the pressures felt for individuals and families, let's be mindful of wording so that this can be a safe and inclusive conversation for all to feel comfortable to read and post to.

 

Here at ReachOut we like to do reframes to ensure our language is stigma free and safe for all, so looking at words like "deficit" and reframing to "challenges". I am sure you can think of many more too! We just want to make sure everyone is heard and feels validated here on the forums Heart 

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Re: Disability Royal Commission rant

@Bre-RO  If you are talking about me what i said was that some people see it like that NOT that it IS a deficit I was referring to public opinions and stigma not actually calling it that so like idk what I did wrong but I feel like nothing I say is going to be understood at this point so I may tap out of this conversation. Sorry @Tiny_leaf  it is a good topic though. 

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Re: Disability Royal Commission rant

Hi @Bre-RO 

 

While I agree with what you're saying, I'm not really sure what has been said here that could be interpreted as stigmatizing... 

Is this related to something someone has said, or just a general pointer because discussions like this can be sensitive?