Disabled

firemonkeyfiremonkey Citizen
edited July 13 in Advocacy
I'm increasingly coming to the conclusion that there's a 'disabled elite'. Members of which are seen as the 'Go to' people when it comes to the media  wanting to hear a disabled person's point of view . They tend to be highly driven and ,indeed, skilled when it comes to  self promotion, and very adept media performers.

I find it very hard to identify with such people. They are much more confident, and adept at coping with life, than I could ever be,even though there's a tendency  to paint themselves  as the poster children of whatever disabilities they have.
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Comments

  • Teach51Teach51 Citizen
    edited July 13
    I believe that social media in the main presents a "photo shopped" "touched up" pseudo reality that is all about seeking attention and has little to do with true support, real life or honesty. I learnt something a long time ago and that is to never compare myself to other people and to credit myself for my positive aspects and not focus on the deficiencies. Other people made it their life's work to negate me, I am not going to do it as well.

    NB Maybe these disabled people are playing a part? We don't really know if they are who they say they are.🤔
  • AmityAmity Administrator, Citizen
    I dont know where the energy comes from to be a poster child of sorts.
    So many other people to be aware of in that situation, I struggle to mantain relationships with the tiny amount of people in my life, to be high profile in that way isnt something I could manage without a burnout.

    Maybe the difference is introverts and extroverts?
  • Teach51 said:

    NB Maybe these disabled people are playing a part? We don't really know if they are who they say they are.🤔
    I've never considered that. What comes over very strongly is 'You wouldn't believe how autistic I am, and yet I can juggle 6 balls while blindfolded and standing on one leg' (yes I'm exaggerating, but I hope you get what I mean).

  • Amity said:
    I dont know where the energy comes from to be a poster child of sorts.
    So many other people to be aware of in that situation, I struggle to mantain relationships with the tiny amount of people in my life, to be high profile in that way isnt something I could manage without a burnout.

    Maybe the difference is introverts and extroverts?
    You could very well be right about introverts and extroverts. I'm very much an introvert. I'm quite different IRL  than on the forums & social media I go on online.

  • Teach51Teach51 Citizen
    edited July 13
    There are trolls out there who like to make people feel bad and they are pretending to be autistic, I have encountered them on another forum. 
    It is sometimes not even with bad intent, just a desire to be someone else.
    some may not be autistic/ disabled but self-diagnosed while remaining misinformed as to what autism really is? Being an aspie is quite fashionable in certain areas of work, in my country it's Cyber security and R&D.

    Others may appear on all sorts of forums and take on a chameleon syndrome persona in all kinds of different categories because they are bored and lonely. 

    I have also encountered "arrogant" autistics, though they have been few and far between.

    Some also may be authentic wonder boys I suppose 😁

    My HFA "friend" won a sports scholarship and is unusually well coordinated but he still struggles on a daily basis to keep his life in order mentally and from a sensory perspective. Burn out happens on occasion.

    @Firemonkey: I wonder if growing up in a competitive environment with great expectations has added to your sensitivity to this?
  • Teach51Teach51 Citizen
    Teach51 said:

    NB Maybe these disabled people are playing a part? We don't really know if they are who they say they are.🤔
    I've never considered that. What comes over very strongly is 'You wouldn't believe how autistic I am, and yet I can juggle 6 balls while blindfolded and standing on one leg' (yes I'm exaggerating, but I hope you get what I mean).

    I do. 
  • firemonkeyfiremonkey Citizen
    edited July 13
    Teach51 said:
     growing up in a competitive environment with great expectations has added to your sensitivity to this?
    My parents certainly had high expectations re what I'd achieve, but at the same time were very blasé when my academic performance started to go downhill.
    Within the last year I've been told that scores from pre teen intelligence tests had me getting around a 150 IQ(147 was quoted a bit later). I had been totally unaware of that. Academically I performed nowhere near that level.

    I have recently applied a method  of calculating  IQ from high range IQ tests , and that gives me  a 147 IQ. 
     
    The prep and public school I went to were fairly competitive environments, but nowhere near so as schools  like Eton ,Harrow and Westminster. 

    Being introverted,sensitive, undiagnosed Aspergic, and what now would be called 2e, was not   a good thing when it came to boarding school life from the mid 1960s to 1970s. Public school was an environment where being brash and sporty was seen as a virtue among virtues. I was neither of those things.

    I doubt I will ever be able to totally  shake off the belief that I'm one of life's  utter failures.


  • Statest16Statest16 Citizen, Mentor
    Society has made the disabled into hero's and glamourized it and it's made some  in the disabled community very haughty for sure.

    You see it on youtube all the time,the arrogance and haughtiness
  • HylianHylian Citizen, Mentor
    When I've seen disabled advocates on social media I don't really see many people like this. A lot of them are honest about their struggles about holding jobs, keeping friends, etc. but maybe I look at different things and "hang around" a different crowd online. I've noticed older people on social media are more likely to be this "poster child" thing since they have more time to get their lives together, so maybe that's why I don't see it's prevalence because even NT people in my age group are struggling to do that.
  • AmityAmity Administrator, Citizen
    edited July 13
    That is an interesting observation @Hylian, Im an established "under-rock dweller" I have an awareness of these kinds of things existing, but, I dont quite notice them, not really.
    I dont have the stomach for FB Twitter Insta etc, Im not sure @firemonkey but I have assumed that the source of the 'disabled elite' is from social media.
  • Amity said:
    , Im not sure @firemonkey but I have assumed that the source of the 'disabled elite' is from social media.
    Bullseye! I just can't  identify with such  people. They'll talk about experiencing intense autistic symptoms in one breath, while in the next breath saying they've received a fantastic job offer. I'm someone who's never worked due to the problems I have and lack of adequate help and support for them. I don't have a circle of friends. I can't drive. I'm not writings books as more than a few of the disabled elite do and/or  collecting several Phds . My adaptive functioning is way below my intelligence level. Even if Covid was wiped off the face of the Earth tomorrow I couldn't venture far from home , now as much to do with chronic backache as due  to a poor sense of direction.

  • verityverity Administrator, Citizen
    I have witnessed both "hauty" and modest advocates.

    It is easy to be cynical towards successful advocates but they can provide invaluable information, and support.

    I think the key to advocacy is not having a single type but a range. 

    One person's awareness is exactly that. We only have our experience to go on. So it is likely no one person's advocacy will be perfect.
  • verity said:
    I have witnessed both "hauty" and modest advocates.

    It is easy to be cynical towards successful advocates but they can provide invaluable information, and support.

    I think the key to advocacy is not having a single type but a range. 

    One person's awareness is exactly that. We only have our experience to go on. So it is likely no one person's advocacy will be perfect.
    It seems there's a thinly veiled disapproval and dismissal  of my take on things.


  • Statest16Statest16 Citizen, Mentor

    It seems there's a thinly veiled disapproval and dismissal  of my take on things.


    Maybe not so,maybe people are just acknowledging that disabled people are people and all people are corrupted by power.Hence; Disabled people with power will then be inevitably corrupted by power.
  • firemonkeyfiremonkey Citizen
    edited July 14
    I don't see it as being an issue of 'corruption'. I just can't relate to  their mix of 'you couldn't find a more symptomatic autistic person than me' and 'hey folks I've done all these wonderful things this week'. It's  very different from my experience as a disabled person. Far less debilitating in terms of the adverse effects.
  • Statest16Statest16 Citizen, Mentor
    I don't see it as being an issue of 'corruption'. I just can't relate to  their mix of 'you couldn't find a more symptomatic autistic person than me' and 'hey folks I've done all these wonderful things this week'. It's  very different from my experience as a disabled person. Far less debilitating in terms of the adverse effects.
    So your talking more relatability then?

    I don't relate well either
  • verityverity Administrator, Citizen
    It seems there's a thinly veiled disapproval and dismissal  of my take on things.


    Not so, just we have a different take on his. There are always elitist, but not everyone I have witnessed in this role is.

    I can think of a blind guy who simply explained what life was like growing up blind in the 60s and onwards. I don't find him elitist at all and he was an effective advocate for disability. Especially explaining to sighted people. He was very positive that was his personality. 

    Regarding ASD I have met similar people.
  • verityverity Administrator, Citizen
    edited July 14
    I get what you mean though, in a way advocacy itself goes against the those that are socially clued in. Especially when you are talking about vloggers an the like.

    However it is complex, and what applies to them in terms of personality applies to most vloggers on the spectrum or not. So these are not average people socially either.
  • SlyFoxSlyFox Citizen, Member
    verity said:
    I have witnessed both "hauty" and modest advocates.

    It is easy to be cynical towards successful advocates but they can provide invaluable information, and support.

    I think the key to advocacy is not having a single type but a range. 

    One person's awareness is exactly that. We only have our experience to go on. So it is likely no one person's advocacy will be perfect.
    turns into the if they can do it so can you. 
    just like alot of people think every aspie has some amazing special talent like being a doctor , playing piano, or being artist  . i got tired of hearing about that autistic  guy who drew nyc from memory. do you hear about him anymore? did he make loads of money is his life better?  even in autistic  world i'm considered a loser among loser 
  • Statest16Statest16 Citizen, Mentor
    edited July 14
    SlyFox said:  even in autistic  world i'm considered a loser among loser 
    I promise you I'm a bigger looser LOL😁😁
  • Statest16 said:

    So your talking more relatability then?

    I don't relate well either

    Yes, very much so.

  • verity said:
    It seems there's a thinly veiled disapproval and dismissal  of my take on things.


    Not so, just we have a different take on his. There are always elitist, but not everyone I have witnessed in this role is.

    I can think of a blind guy who simply explained what life was like growing up blind in the 60s and onwards. I don't find him elitist at all and he was an effective advocate for disability. Especially explaining to sighted people. He was very positive that was his personality. 

    Regarding ASD I have met similar people.
    Of course I don't  believe all  are elitist . I do believe that there's a sizeable minority of them on Twitter  though.
  • verity said:
    I get what you mean though, in a way advocacy itself goes against the those that are socially clued in. Especially when you are talking about vloggers an the like.

    However it is complex, and what applies to them in terms of personality applies to most vloggers on the spectrum or not. So these are not average people socially either.
     
    I  like Amythest Schaber, but  she's  not posted any videos in the last two years.


  • verityverity Administrator, Citizen
    SlyFox said:
    turns into the if they can do it so can you. 
    just like alot of people think every aspie has some amazing special talent like being a doctor , playing piano, or being artist  . i got tired of hearing about that autistic  guy who drew nyc from memory. do you hear about him anymore? did he make loads of money is his life better?  even in autistic  world i'm considered a loser among loser 
    I can relate to that a for years due to executive dysfunction and  afanasia. Both not stereotype of Autism at the time. Caused me mental anguish and frustration that no diagnostician was interested in helping me there.

    However this was pretty much everyone's understanding at the time, not just advocates.

    It took me ages to figure out a way to make a viable work life on my own.

    I don't what is is but nowadays I try to give people the benefit of the doubt, and avoid situations where I feel resentful. Of course if such people are being obnoxious, I have no time for that.
  • verityverity Administrator, Citizen
    edited July 14
    One of the wrong perceptions of autism from my experience was you were either very functional but with some social problems or a completely low functioning to the point that you would not even be here writing this. Very little in between was the understanding.

    So I do think it is about the weight of expectation. I think the situation has improved, but there is still a way to go in terms of advocacy.

    I personally would find it hard being a public figure , so those that are willing to stuck their neck out, I'm willing to give them a chance.
  • verityverity Administrator, Citizen
    Another thing I expended is people telling me I'm smart and then expecting abilities I don';t have as a given.
  • verityverity Administrator, Citizen
    Of course I don't  believe all  are elitist . I do believe that there's a sizeable minority of them on Twitter  though.

    I just can't go on twitter or facebook, I hate the format and how people behave on it. Also the data mining.
  • firemonkeyfiremonkey Citizen
    edited July 14
    verity said:
    Another thing I expended is people telling me I'm smart and then expecting abilities I don';t have as a given.
    I don't like the 'If you're good at X you must be good at Y' mindset of a lot of mental health professionals, and the disparaging words that can be aimed at you for failing to live up to expectations.

    An example from my last hospital stay many years ago. Being chosen to do a cookery course as a part of therapy. Genuinely struggling to peel potatoes. Told off for taking too long. Then chucked off the course for being bolshy  and obstructive etc.

  • SlyFoxSlyFox Citizen, Member
    Statest16 said:
    SlyFox said:  even in autistic  world i'm considered a loser among loser 
    I promise you I'm a bigger looser LOL😁😁
    you seem to have your life in order o.O
  • SlyFoxSlyFox Citizen, Member
    verity said:
    Of course I don't  believe all  are elitist . I do believe that there's a sizeable minority of them on Twitter  though.

    I just can't go on twitter or facebook, I hate the format and how people behave on it. Also the data mining.
    I'm on it everyday, though I can't express myself due to work friends. 
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