Lived Experience Forum

[still_bookish]

Thanks, @Jynx. That does help. I've just tested it out. It would be helpful if that box said 'Add caption here' or something similar, instead of being just a blank box. I missed it completely (and I always add alt text to my images on other platforms so I was looking for it). I haven't been back on the forums long, but I haven't seen a single image with a caption, so either people don't know it's an option, or they don't care about accessibility.

That said, I'm also not sure why the only option is to add a caption instead of proper alt text. Anyway, I guess it's better than nothing, but only if everyone uses it.

Thank you for your help. Have a good night.

[still_bookish]

There is a good explanation of the social model of disability on the People With Disability Australia website. I thought I’d share the link. I hope it’s okay to do this. You can find it here.

I think the social model of disability is similar to what you were talking about, @chibam, where—in terms of psychosocial disability—there is a combination of an internal condition (agoraphobia, for example) plus a barrier in the environment or society (for example, the need to attend an event in person). In this case, the person with a psychosocial disability (agoraphobia) wouldn’t be able to participate. However, if an online option also existed, then the person may be able to attend the event.

It was amazing (and also frustrating) to see how so many accommodations that disabled people had been denied for years (like online access), suddenly became available when the world locked down due to the pandemic. And it’s extremely disappointing to see how quickly those accommodations have been revoked now that everything is returning to ‘normal’.

[TideisTurning]

@chibam it sounds like it's been really hard for you to define 'disability' in order to see if it feels like a fit for you. The intersection of disability and mental health/illness is a really tricky and complex one! In formal systems like NDIS, whether or not you have disability may be defined for you, but that doesn't mean you don't also get to define disability and what it means for yourself. Some of the definitions you've described sound like they sound very much like ideas central to the social model of disability.

Thank you also for your perspective and highlighting how there are both internal (such as a meical condition or impairment) and external (such as building accessibility) factors that may contribute to an individual's expereince of disability.

To my way of thinking, in terms of disability and identity- at the simplest level, do you identify as having a disability? Just because others may have determined you have a disability doesn't mean you have to identify with it (including completely or as the other person has defined it) and that is totally ok. 

@BPDSurvivor I absolutely love what you've said here especially

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@BPDSurvivor wrote:

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. 

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This is an absolutely incredible reframe! Everybody has strengths and abilities and it's super important to not only focus on them, but highlight and celebrate them! 

@still_bookish thank you so much for sharing your experiences around coming to accept and identify with disability. I feel you on NDIS, though as you have mentioned, that is an entirely different can of worms I also won't go into here! 

I love what you have said about being vauled for who you are rather than what you do. Thank you also for your attention to accessibility here on the Forums and to @Jynx for highlighting what already exists on the Forums to enhance accessibility. 😊

[TideisTurning]

To kick off part 2 of our discussion: 

For those with disability, it can feel like their disability defines them. For some, that’s a good thing, and for others, not so much. I once heard someone say; ‘there is more to me than just CP’ (Cerebral Palsy; being their disability diagnosis). I believe that is true of any disability- it doesn’t (have to) define you.   
 
For some people with disability, disability might be seen as something impossible to remove from the rest of your identity. It influences the way you interact with, perceive and experience the world.  

Questions:

• How do you define disability for yourself?  
• Have you had others define disability for you? 
• If you have experienced both, how did the two differ? 

I'll tag those who have supported the last post & contribted to the discussion so far 😊 @still_bookish @chibam @BPDSurvivor @Rhye @cloudcore 

[Appleblossom]

I am not out loud and proud about disability and can get triggered into my own trauma and neglect by those references. I have tried not to succumb to shame and just be me on this forum.  However shame is a huge aspect my family story and the various disabilities individuals may have experienced.

For me, we are still a long way from things like acknowledging that my father was accused of malingering by a doctor in ED on the day he died of pneumonia. Pneumonia is a pretty severe illness and should have been bloody obvious.   I was 11 years old witnessing that. So much shaming and putdowns and it is still going on in my life.  However of course I did not join all the dots until many decades later, even decades after I had his coroners report.   It is a shocking situation and the implicatiions for me and my siblings were huge and largely unmapped. Yes my father was on psych meds and the trauma and sex abuse literature and therapuetic possiblities were nascent.  Mostly it came with social accusations and insinuations. It was one of a long line of gross incompetence by that profession that lauds itself above the rest in most acadamies.

50 years later I am drawing MY conclusions, after I have done my research, and finally indulging a little Apple outrage, as mostly I have had to comply to keep all the many with more power than me, happy.

Personally I did not indulge much of a sense of disability growing up, as I was frequently poked and prodded to get off my bum and work, from both without and within my psyche. Then even with my neck issues I continued working for money or for community, intellectually and physically. Now it is almost painfully obvious that I am disabled but cant stop "working" or I probably will collapse into gross self harm and death.  Take my work away from me and I have nothing.  That is one consequence of that idiot doctor who abused my father on the day he died 50 years ago.

Believe me we still have a long way to go .....before there is justice re mental health stigma, even if there are a lucky few who manage to work the system.  It is great that some become poster girls and boys for disability, but there are limits to how many people can get paid and bask in the spotlight about their own personal story.  The social and financial system simply does not support all with disabilities to get those advantages. Be careful about exceptionalism stories, cos they can come with implied blame, as to why did you not set up a podcast .... etc ... So if people have gone through the hoops to get a pension, dont make things any harder for them.

This morning I had to hear a lovely young female voice ...from a small organistaion with power over my son and I, talk about putting a "solid treatment plan" in place for my son.  It has triggered me, and I think. Good God.  The crap they call "treatment" and put in place is all about their own legal liability and very little to do with actual treatment of the human being. It requires very little thinking outside of the box or creativity.  There is a website that says they order too many blood tests and it is expensive, but a tool in compliance regimes, not health or well being. My son's circumstances are partly because DHHS dropped the ball before his birth. It was a case of a person who I did not give birth to, and my biological children have to suffer.  Am feeling like a lioness mum for a few hours. I will have to careful with my words when they come and "visit" us later in the month. I will try and not be insulting about the delusions in the system, because I am noticing that they have very thin skins and expect a great deal of unentitled respect without actual DELIVERY OF VALUE. I am tired of little girls presuming they are doing something helpful and being paid a great deal to achieve very little.  Probably just disgruntled by a lot of misogyny against older women ... there is research about it somewhere.

I was granted a disability pension for physical and emotional issues but they are both related as my neck would not have played up if my stress levels were not through the roof.

Personally when I finally yielded and went on NDIS a couple years ago I then was faced with a great deal of abuse from so called professionals supposed to provide care.  So now 4 years after I joined Sane I can relate to the many who post about abuse within the system.  Before that it mostly had been me witnessing the abuise of my various loved ones.

My identity is locked into work no matter how you feel, whether it is feeding kids or paying bills. I am lucky in that I can work sitting down and sitting in my lounge room, however the SHAME and STIGMA of mental illness have impacted on my  part time private music studio so I have gradully let that all recede.  That said, last night 3 genuine friends dropped in for a cuppa and my son offered to play Chopin for them.  One of the ladies, a great social type is now planning a soiree for him ... and wants to go French Salon style entertainning .... which is great .... fingers crossed ... it all works out ... cos I am out of drive ... is I have to manage those things alone.

I prefer to see it as each person has strengths and weaknesses ... or in the newspeak .... differently abled ..... and I want so called professionals ... to acknowledge more of their own limitations .... and bias ... which are many ....it is an illusion to think they are all objective ... and rely on blood tests as evidence.  Sadly I been in the system too long ... and sick of smelling rats.

 and can we completely drop the norm ... or normal .... word. Its BS ... I believe in normal curves which indicate a flexible approach to people, events and reality and not a hierarchical one.

Also lets celebrate non normal curves and not be fatist .... hee hee ... bad joke ... sorry about hissy fit ... will be on better beahviour later.

[flybluebird]

Hi @Appleblossom 

I respect your take on this discussion and I’m really sorry to hear what you went through as a child with your dad, and what you’ve experienced & witnessed over the years.

It’s very true, we do have a very long way to go with having a more effective mental health system and acknowledging the power imbalances that have massive impacts to us - navigating within it.

I think your ‘little apple outrage’ is valid and not everyone will have the same views on this, however it’s important to be able to also respect differences of thought.

It’s certainly true that none of us are without our own limitations & biases professionals included, can I ask you, what do you value in those exchanges?

I hope that a spark can be reignited around the music/ French salon style entertaining idea that your friends brought to you. Sounds like you have some good friends around you.

Flybluebird

[Appleblossom]

Hope so re "Salon" idea, but also tricky as they are antivaxxers and pro freedom. So I am opening my home to 'at-risk' people, which come to think of it has been my circumstances all along. 

I have always tried to be open to others views. @flybluebird 

I also have posted many gratitude posts etc, when a service has been effective, search my profile. Considering the posts from others on here, I am beginning to think , I suffer from a situationally coerced mute disabilty about NOT complaining and an excess of gratitude for basics (possibly called "fawning" from fight/flight/freeze/fawn fame).

I also would like to  be valued for who I am rather than what I do .... @still_bookish 

[periwinklepixie]

hey gang! So happy to be celebrating International Day of People with Disability with all of you. 

Like a lot of you have said, disability is a hard concept to grasp sometimes. For many people 'disability' can be a really dirty word or something we don't want to align ourselves with. For many years this internalised abliesm prevented me from identifying with being disabled. 

For me, being disabled is a huge part of who I am. Like others, I have found solace and and pride and solidatirty within the disability community. Identifying as disabled really allowed me to find an intersection between my own experiences and the way the world limits me. It gave me a language and culture to feel confident asserting for my needs. 

In the past I just felt like I couldn't do things or a I was less than. Now being part of the disablity community i recognise my strength, and resillience and I don't mean that in a gross, inspirational way - just in a way that allows me to be kinder to myself when I'm really struggling. 

You will notice as well I have used the word 'disabled' through out rather than 'person with disabiltity'. That is because to me disability is so important to who I am it doesnt feel like a 'with' it feels like a huge part of how I see and experience the world that is 'of me' not' with me,' if that makes sense. 

Looking forward to hearing other's ideas throughout the week! 

[BPDSurvivor]

Hi @TideisTurning , in reference to Part 2 of this discussion:

How do you define disability for yourself? 

- I am me. I have strengths, I have weaknesses, I have perks, I have interests. My dis/abilities don't define me. 
- disability may come up as a barrier for me with regard to daily functioning, but it doesn't mean I can't overcome these challenges.

- I become 'disabled' when the world around me cannot cater for my needs.

Have you had others define disability for you?

- having a disability sees me as the problem that needs fixing.

- being disabled by my surroundings sees my environment as the problem to be fixed.

If you have experienced both, how did the two differ? 
I like to focus on my strengths and what I enjoy and am good at, whereas the world may look at my diagnosis and put me into the 'too hard' category.

@periwinklepixie @Appleblossom @flybluebird @still_bookish 

BPDSurvivor

[chibam]

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@TideisTurning wrote:
How do you define disability for yourself?

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Well, as I outlined above, I really think it needs to necessitate some sort of significant internal condition (either physical or mental). It can't exclusively hinge on external problems with a person's life.

Internal problems that have been caused by external problems can certainly qualify as being a disability. But only if the internal problems remain even in the absence of the external problems that cause them. If you can cure all the problems by simply removing the external problem from the equation, then that is not a disability, IMHO.

Since my main problems are all external life problems, I don't believe I have a disability.

BTW, I am in no way belittling the gravity of external problems; they can most certainly be as devastating as any disability. I'm simply saying that we ought to take care to categorize our serious issues accurately.

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@TideisTurning wrote:
Have you had others define disability for you? 

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I was lead to believe that, because I had found myself in need of help from the mental health system, that automatically qualified me as having a disability. If you need help, you are disabled, so I was lead to believe.

However, as I mentioned above, my problems were entirely external. I was depressed, suicidal, a little anxious, yes. But that was all because my life sucked! I was lonely; I had no real friends or family - only people who continuously exploited me; my career was floundering; and looking around at the broader world around me did not make for a compelling argument that life was worth prolonging. I did not have any "mental condition" tormenting or handicapping me; I was simply rationally and fairly appraising the lay of the land before me and finding a very bleak picture that disturbed me greatly.

I had turned to the mental health system not because I needed corrections, but because my life needed major corrections. A service which, I later learned, the mental health system does not even provide. Very hypocritical when you considder all that propaganda they put out promising the suicidal that "help is here for you!", but I digress...

Anyway, subsequent to being given that definition of "disability", I've gone on to encounter ever more broad and vague definitions of the concept, leving me more and more confused each time.

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@TideisTurning wrote:
If you have experienced both, how did the two differ? 

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The major discrepancy seems to be that lack of requirement for an internal condition. I think that disability necessitates some sort of internal impearment within the so-called "disabled" person; but others seem to believe that simply being in need of help - regardless of whether the basis of the problem is internal or external - qualifies a person as being "disabled".

Going further, I believe this discrepancy traces it's roots back to our (society's) differing beliefs about what the mental health system is supposed to be doing,

Some believe that a person going to the mental health system is universally indicative of some sort of internal defect, that either needs to be corrected or "managed".

But many people - myself included - believe that there are many cases where a person turns to the mental health system with no internal defects; the problem is not inside them, but rather in the life that surrounds them. And this is what the system ought to be correcting. Fix the external factors that are making the person depressed, suicidal, anxious, ect., and you eliminate those so-called "mental illnesses" they were experiancing as a direct result of that poor quality-of-life.

So you can understand how a societal confusion about the role of the mental health system can snowball in to a confusion about what "disabled" means. If someone assumes I went to the mental health system because there was something wrong with me that needed to be corrected or "managed", you can understand how they might draw conclusions that I must be disabled.

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@TideisTurning wrote:
To my way of thinking, in terms of disability and identity- at the simplest level, do you identify as having a disability? Just because others may have determined you have a disability doesn't mean you have to identify with it (including completely or as the other person has defined it) and that is totally ok.

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See, my concern here is that it undermines our capacity to communicate as a society. Words are the building blocks we use to communicate our own individual thoughts, and the effectiveness of our communication depends upon both sides of a conversation having a common understanding of the words that are used to build that conversation. The greater the discrepancy that exists in our definitions of a particular word, the more and more we shall fail to understand one another properly as we struggle to communicate.

And why should we believe that our confusion will end with the concept of "disability"? Once we get into a habit of individually defining words to suit our own preferances, we will fail to have a common, useful vocabulary; our society will not be able to communicate.

So even though it might seem very comfortable for us to all be able to decide for ourselves whether or not we class ourselves as "disabled", I think there are major undesirable ramifications to this approach. It has a clouding effect on our ability to communicate with the outside world, and IMHO, this may well be the most debilitating disability we can end up suffering.

I am a native english speaker, but honestly, one of the greatest enduring hurdles of my life has been my inability to communicate clearly with the people around me. There have been many causes behind this: me making incorrect assumptions about other peoples' underlying mindsets, fear of upsetting people by openly stating truths and points-of-view I hold... But in recent years, one of the biggest stumbling blocks I routinely encounter is ambiguous language. Words that have no clear meaning - in some cases, words that once upon a time had a very clear meaning.

"Disability" definitely falls in to this box. I made a contribution to the Royal Inquiry into the Abuse of Disabled People, having been told that I fit the new, ambiguous definition of "disabled".

But the more I followed it, the more I began to see that the dialog crucially revolved around peoples' internal handicaps, and their interactions with the outside world. Having no internal handicap myself, it became increasingly difficult to see how the things I wanted to say could be presented in a way that fit the overall conversation. Trying to address the questions that the government was asking became an exercise in shoehorning unrelated statements into the answer boxes.

Eventually, it became undeniable that I didn't belong there. I never should've stuck my nose in there in the first place, because I'm not disabled, nor have I ever been. I have a terrible life, and I have been terribly abused by individuals and "the system", but my grievances do not belong in a space for abused disabled people; because disability has no role in anything I've been through.

I wandered in to that environment, in good faith, because I'd been greatly confused about what "disability" meant in this day and age. I wish I hadn't.

So I hold out this personal hope that, sooner rather then later, we can all sit down and decisively settle what words like "disabled" actually mean, so we can all be on the same page as one another.

It mightn't be comfortable for a lot of people, but at least we will all be able to communicate properly. And that's an indispensable first step to overcoming the issues that upset us or cause contention.

That's just my two cents. I'm sorry if is comes across as being argumentative, @TideisTurning . I don't mean any disrespect.