Lived Experience Forum

[TideisTurning]

As some of you may be aware, tomorrow, 3rd December is the International Day of People with Disability. This is a day to acknowledge, honour and celebrate people with disability and the vital and invaluable contributions they make. We also want to recognise, acknowledge and honour that for some living with disability, it may not feel like something to be celebrated, and that’s completely ok too. All perspectives and experiences are valid and important and we hope you will share as much as you’re comfortable with, including those not so great experiences if you would like.  

This year’s theme is ‘leadership and participation of people with disability toward an inclusive, accessible and sustainable post-Covid19 world’. But, for this discussion, we are going to take it a step back. Over the next week, we will post a number of questions to explore and facilitate discussion of disability and identity, though you are also welcome to expand on what’s been asked if you would like! Over the week, we will be talking about:  

• What disability might mean for all of us individually  

• How disability may fit into identity  
• Disability defining our identity  
• Choices of language to refer to disability  
• Assumptions about disability and their impact   

 If you’d like to be kept up to date, support this post and we will tag you when the discussion starts tomorrow!   

 As we go through, if this discussion does raise anything for you, we want to strongly encourage you to reach out for extra support. There is SANE’s Helpcentre and 1:1 Peer Support services. Blue Knot also has a dedicated helpline for those with disability in relation to the Disability Royal Commission.  

[TideisTurning]

I'll tag a few members to start off who this may be of interest to @Lucky1305 @Nonny @Shaz51 @Gwynn @chibam @Adge @eth @BPDSurvivor @LostAngel @shayshine @pinklollipop15 @Rhye @flybluebird @petrichor @BoredZora @Mazarita @Cin @Mnemonic @periwinklepixie @Diannegrey59 @Hippychick7878 @Oaktree @Determined @bipolarbunny @MrsFahey @eyezzy @Luckymoo @Anastasia @Appleblossom 

[chibam]

Thanks, @TideisTurning !

Personally, I'm really interested in finding out how a person can properly find out whether they are classified as disabled or not. Over the past few years, I've read a lot of really ambiguous (read confusing) and conflicting information on the subject.

For me, one of the massive stumbling blocks is this somewhat new concept of "psychosocial disability", which, I'm told is when "mental health problems intersect with social and/or environmental factors to create an obstacle for the individual" (or words to that effect).

This is further complicated by the fact that, in modern times, many of us who would have traditionally been labelled as "mentally ill" for our mindsets are now calling for recognition that our problems are not "mental problems", but are instead "life problems" which have given us depression, anxiety, suicidalness, ect.

So, with all these layers of abiguous, ill-defined, and inconsistant language, IMHO, it's getting to the stage where basically everybody can easily deem themselves to be disabled.

My problem? I'm lonely. I have nobody in my real life who I trust or genuinely enjoy the company of. I have no meaningful human connection.

Physically, mentally, I have no significant impearments or defects.

But because my life is so empty, I am (very rationally and reasonably) suicidal. By traditional standards, being suicidal automatically means that I must be mentally ill. Being "mentally ill", any social difficulties I encounter therefore become classified as "psychosocial disabilities". Hence, I officially qualify as a disabled person.

As a person with no significant impearments/defects, this makes no sense to me. Moreover, I worry about the implications of this. Potentially, any life struggle - be it bullying, unemployment, poverty, loneliness, beaurocratic struggles, descrimination, residential problems... anything with the potential to bring the sufferer down into long-term depression and/or suicidalness - can render the sufferer as officially qualifying as "disabled". And, to paraphrase "The Incredibles": "When everyone is disabled, no one will be!"

So, I guess the question is: How do I know if I'm disabled?

[Rhye]

🎉 Happy International Day of People with Disability 🎉

I'm standing up and waving the flag today for increased public awareness, understanding and acceptance of people with disability!

Head on over to the IDPW website and check out some of the amazing stories that celebrate and showcase Australians with lived experience of disability. 

To all the SANE members who identify as a person living with a disability, I hope today (and everyday!) is a great one for you 

[TideisTurning]

Week long discussion part 1: 

Before going any further, we should establish what is meant by ‘disability’ and ‘identity’. Disability is really tricky to narrow down to a single definition. One definition is this; Disability may be thought of as the result of societal, attitudinal, physical, communication and/or social barriers that prevent or hinder people who live with a medical condition/ impairment. Often, this can include diagnoses associated with complex mental health issues.  

Identity can also be at times tricky to define, but for the purposes of our discussion, can be thought of as who you are, the components and characteristics that make you, you!  

However, given those definitions, what disability and identity mean within those definitions will likely be very individual and differ from person to person. For instance, you may identify as having a disability, or you may recognise yourself as having a disability but not be  ‘out and proud’ or identify as part of the disability community so to speak.  

Questions:

1. What does disability mean or look like for you?  
2. How does disability fit into your identity?  

[BPDSurvivor]

@chibam , you've raised some really good points there. 

In the past, due to my MH, I've been told not to 'dis' my 'abilities'... in retrospect, I think this celebrates the fact that whether you identify as someone with a disability or not, EVERYBODY has strengths and abilities. 

What does disability mean or look like for you?  

For me, having a disability means having some barrier to be able to fully function in society. However, there is a fine line between disability and impairment because often, environments impair people who have disability. eg a person who uses a wheelchair may be able to function exceptionally well in society until they are impaired because a building doesn't have ramps to enter. 

Most importantly, despite disability, it is important to focus on the strengths of a person.

How does disability fit into your identity? 

My acute mental health disabled me for many many years. Today, I live very successfully with my MH condition and have learnt to make the most of my situation. I've realised that I don't want to allow my disability to disable me. I just need to find creative ways if managing.

@TideisTurning @Rhye 

[still_bookish]

Hi everyone.

It took me a really long time to realise/acknowledge/accept that I’m disabled, even though I was getting disability accommodations at uni and was clearly experiencing functional impairments due to my mental illness and trauma history. It took me so long to figure out most people weren’t struggling like I was. Now I have no hesitation saying I’m disabled and I am proud to be part of the disability community.

I suppose I started to realise I really was disabled when I applied for the NDIS, which happened in a roundabout sort of way because I sought help from Partners in Recovery but they were about to lose their funding due to the introduction of the NDIS. (Applying for and dealing with the NDIS was/is a nightmare but that’s a whole other story.)

Anyway, to get back on topic (sorry) …

1. What does disability mean or look like for me?

I think, generally, if you have a health condition (mental or physical) that impacts your life, that is, the way you’re able to live your life (ie. your functional capacity), then you quite possibly have a disability.

For me, that has been the case for decades even though I wasn’t aware of it in those terms. I struggle with everyday tasks that a lot of people take for granted: for example, using the phone, speaking to people face-to-face, going to the supermarket, watering the garden, putting the bins out. I can’t even leave the house at the moment (though I have to brave the supermarket every few weeks because as overwhelming as that it is, it is slightly easier than having someone else pick/pack my grocery order and having things delivered to my house).

Unfortunately at the moment, it means I’m unable to connect with others and my life has very little meaning. I have disability funding but I’m too disabled/unwell to use it. 🙃

2. How does disability fit into my identity?

Disability is a big part of my identity these days. I’ve been lucky enough to connect with the disability community via social media, which has not only provided the opportunity to makes new friends who ‘get it’, but also to learn about the lives and struggles and achievements of other disabled people and has helped me to feel much less alone.

A big (and important) message in the disability community is that you don’t have to be ‘productive’ to have value as a person. It was huge for me to hear this—and it still is. I’ve been too unwell to work for quite a few years now. I’ve always struggled with valuing myself. Being part of a community that values me for who I am not just what I do is pretty amazing.

I’ve also become a lot more aware of accessibility and ableism since becoming part of the disability community. I’m so shy and introverted and anxious that it’s hard to speak out about these things, but I try as much as I can.

Thank you @TideisTurning , for starting this topic. I look forward to reading everyone’s responses.

[chibam]

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@TideisTurning wrote:

1. What does disability mean or look like for you?  

---

Well, as I previously alluded, I think there needs to be some clear, definite boundary to it. Otherwise the term ceases to have all meaning.

I think that disability really needs to refer to situations where an individual struggles to do things, because of some internal condition that afflicts them, not because of outside forces currantly oppressing them.

e.g. A person who lives in quiet, safe, suburbia, who is terrified of stepping outside their front door, I would classify as disabled, as it would seem their afflicted by crippling agoraphobia. But a person who lives in a city block with the highest violent crime rate in the country, who is terrified of stepping outside their front door, I wouldn't classify as disabled, as their fear is not borne from some internal condition, but from a very rational appraisal of their immediate surroundings.

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@TideisTurning wrote:
        2. How does disability fit into your identity?  

---

It doesn't.

I have life problems which make me depressed, but they are not internal problems. They are external problems with my life that need to be fixed.

I am not "functional" - as many people might describe it. But that's due to a combination of having minimal opportunities to be "functional", and having no reason to be "functional"; not because there is anything physically or mentally wrong with me.

You want to know why a man doesn't climb a staircase? It's convieniently easy to assume that it's because his legs don't work. But maybe the real answer is that there's nothing up there that's of any use to him.

Due to numerous confusing conversations and pieces of advice I've recieved over recent years, I was lead to believe that I might qualify as being "disabled". according to some of the new, ambigous interpretations of that term. I played along, even though I always thought it was fairly absurd that I should meet that criteria - having no notable internal handicaps.

It lead me to stick my nose into places that really were the business of truly disabled people. I regret that now. Disabled people don't need abled people like myself  intruding upon important conversations about their own difficulties, and hijacking those discussions to draw focus on to our own problems.

[still_bookish]

May I please ask a question, @TideisTurning? This is maybe not the right place to ask this question, but it seems relevant to the topic. Is there no option to add alt text or an image description to images that are uploaded in posts? Am I missing something? I can’t seem to find anyway of doing it and it’s concerning because a lack of image descriptions would make the forums inaccessible to disabled people who use screen readers. But maybe it's just me being vague due to my lack of technological savviness?

[Jynx]

Hi @still_bookish, 

When uploading photos, there is a white box underneath each picture. You can click it, it's a text box that allows you to caption your images. Hope this helps