Invisible disabilities

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huhn

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Re: Invisible disabilities

  • on: 25 Feb 2020 03:13PM
last week I was having a coffee and next to me two young men discussing  how disgusting it is  that a person who only stutters gets a disability badge and money and  higher security at work. I was just thinking, only stuttering is a big issue but I think that this  discussed person has likely other issues what are not known to this two and with this more  financial support  what made this 2 very unhappy.
I was just thinking of my two small ones and that is similar , most issues are hidden  and only seen in school, closed friends and family.

KizzyKazaer

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Re: Invisible disabilities

  • on: 25 Feb 2020 05:27PM
Quote
...I think that this  discussed person has likely other issues what are not known to this two and with this more  financial support  what made this 2 very unhappy.

Exactly Huhn - a sad combination of ignorance and plain old resentment/jealousy. Some are too quick to judge negatively, perhaps it makes them feel temporarily superior to other human beings or something  >erm<

Hello Kizzy Kazaer

About invisable disability's is it SHAME stopping people saying/admitting these unseen disability's + if it is could it be addressed by the UNITED NATION'S under human right's
Shame could well be a factor given Huhn's above example - I know I only reluctantly 'admit' to invisible disability when I absolutely have to...

SteveX

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Re: Invisible disabilities

  • on: 26 Feb 2020 06:32PM
It doesn't surprise me tbh.

If you are sexist, racist, ageist, anti-gay or whatever, then you will be called up for it (and rightly so) but it's totally fine to be anti-disabled.  I myself have seen some horrible things in the street not just happen to me but to other disabled people as well and it seems we are simply fair game.   >steam<
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Sunny Clouds

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Re: Invisible disabilities

  • on: 27 Feb 2020 06:45PM
Certain politicians and media outlets have for some years now been pushing hard the notion that lots of disabled people are faking it.

For a while, I needed a white cane.  (Lovely MLers pointed me to what I  needed at the RNIB who put me in touch with a local sensory impairments charity who sorted me out.)  I was terrified when I started using it.  Why?  Because I'd read an absolutely ridiculous comment under a news article.  The writer said their neighbour said he was blind and used a white cane, but the writer said they knew the neighbour was faking it because he could climb his garden fences.  Aargh!

But actually, when you think of it, it's a typical problem regarding language and public understanding.  What does 'blind' mean?  Can't see well, can't see much or can't see anything?

And the wheelchair logo for disabled is great but also reinforces a mental association between disabled and can't walk.

I think one thing that's very much needed is good PR, and I think the big disability charities could do it, but I don't think there's a chance in hell of their working together on it, and a campaign here and there of awareness of a particular disability won't cut it.

Having said that, some people are just nasty and it continues to upset me how many people won't speak up.  Twice I've been assaulted on buses and although people have got off the bus specifically to help me, i.e. before their intended stop, none have challenged the assailants.

Looking back on it, there's no way the one driver didn't hear the loud ranting insults heavily interspersed with 'f-word disabled' and similar terms.  I've a suspicion his main concern was for his own safety (which I can understand).

But if he'd had a fare-dodger on board, the correct procedure, which most drivers round here follow, would have been to stop the bus, switch off the bus, open the doors and refuse to move until the offender got off.

So why not do it where there's an assault on someone?

Societal attitudes worry me yet there are little good things. I'm going to mention something I did, but it's not what I did that warms me. Yesterday, in a supermarket, I saw a woman in a wheelchair next to the milk trolleys, which were all empty, looking up at alternatives on a high shelf.

I politely asked if I could help and at her request lifted down various products for her to examine and choose between.  What I loved was that she showed no particular surprise or relief at the offer, which tells me that it's the norm for her either to be offered help or to be given it ungrudgingly if she asks for it.

Little things like that keep a bit of hope alive inside me.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

On the edge

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Re: Invisible disabilities

  • on: 27 Mar 2020 11:41AM
The only way to identify a 'hidden' disability is for those with it to identify themselves after all clairvoyance/mind-reading is not an ability the systems are best qualified with.  Awareness is never going to happen until we all realise this, we can post deaf, mental health etc till we're blue in the face but unless we actually TELL people they won't know. So we can neither complain about ignorance or discrimination. Complaining amidst ourselves is also a pointless thing to do, while it offers exchange of similar issues that present it won't do US on the street any service at all.  You cannot leave it to charity either it's down to YOU.

Sunny Clouds

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Re: Invisible disabilities

  • on: 28 Mar 2020 12:59AM
I see the logic of that.  I also see practical problems for individuals.

Firstly, whom do you tell and how?
Secondly, what of those who are frightened?

To put this in perspective, my ataxia is largely in remission at the moment, but I have a large sign on the back of my backpack, and on each side of my four-wheel trolley warning people about my poor balance.  When sitting on the bus, I usually hold my concessionary pass in a way that covers my name but displays the orange stripe.  So this isn't about whether I'm open about being disabled.

However, having been assaulted on a number of occasions by blatantly disablist thugs, I won't condemn individuals who, having weighed up what's best for them, by whatever thought processes they are able to use, decide they don't want to be the ones that out themselves.

So I see this as a multi-pronged thing.

On the one hand, it's fair to say that if you need adjustments individually, you're going to need to say you need them, which means coming out.

On the other hand, I believe a great many adjustments that are needed by disabled people, including hidden disabilities, are ones that can be made in the form of societal adjustments that benefit everyone, and people can fight for those collectively. 

So for me, it's not either/or, it's both/and.

Which is why I like reading different perspectives as it gives me more idea what to fight for and what sort of awareness-raising I can do.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

huhn

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Re: Invisible disabilities

  • on: 28 Mar 2020 06:29AM
you are right. small help is very important and make  our life easier .

On the edge

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Re: Invisible disabilities

  • on: 28 Mar 2020 09:38AM
I see the logic of that.  I also see practical problems for individuals.

Firstly, whom do you tell and how?
Secondly, what of those who are frightened?

To put this in perspective, my ataxia is largely in remission at the moment, but I have a large sign on the back of my backpack, and on each side of my four-wheel trolley warning people about my poor balance.  When sitting on the bus, I usually hold my concessionary pass in a way that covers my name but displays the orange stripe.  So this isn't about whether I'm open about being disabled.

However, having been assaulted on a number of occasions by blatantly disablist thugs, I won't condemn individuals who, having weighed up what's best for them, by whatever thought processes they are able to use, decide they don't want to be the ones that out themselves.

So I see this as a multi-pronged thing.

On the one hand, it's fair to say that if you need adjustments individually, you're going to need to say you need them, which means coming out.

On the other hand, I believe a great many adjustments that are needed by disabled people, including hidden disabilities, are ones that can be made in the form of societal adjustments that benefit everyone, and people can fight for those collectively. 

So for me, it's not either/or, it's both/and.

Which is why I like reading different perspectives as it gives me more idea what to fight for and what sort of awareness-raising I can do.

I don't understand the logic of campaigning currently.  Hardly any of us have ANYTHING to do with charity or take part in their campaigns either, ask us how many would join as members and a deathly silence is evident, cobblers isn't it? and doomed to failure.  It doesn't stop us all going at 'mainstream' (WHoever that is supposed to be given 10m of us are part of that), for not being aware or considering out issue. 

Basically, the politics of blame is a non-starter and unhelpful, as you need people to be on-side and confrontation doesn't help that.  Those sort of responses should be directed at people identified as being discriminatory, not throwing a blanket blame culture on everyone but yourself. 9 times out of 10 if I explain to someone I meet, my issues they will be considerate bearing in mind as I do Rome wasn't built in a day. 

It's been said elsewhere 10m disabled (or even 11m with hearing loss!), has ANYONE ever seen a significant number of that area uniting to get things done? erm... NO!  While I am being as empathetic as I can to other disabilities (And no I DON'T understand everyone else's issues but at least honest about it), being told I should be is not helpful or practicable. 

We can read everywhere 'not one person is the same as any other' disabled revel in 'difference' and laud individuality, so a 'global' approach to awareness is a complete non-starter isn't it, and why, charities and randoms on social media are wasting their time mostly.  There is no unity of disability or its issues, it's 'everyone for themselves and own issues' again it means awareness is just an unsupported mantra nobody really goes with but feel obligated to pay lip-service to, well, at least some of it if, it is the same awareness that applies to you personally, others have to look to themselves.

So we are as 'discriminatory' as anyone else aren't we, OK as disabled ourselves we have a cop-out excuse but... It's better to be annoyed and do something than apathetic and contribute to our own isolations.  Maybe an online existence will do it for you, but that isn't real people is it? and it doesn't enhance in any way your ability to personally interact face to face which as homo sapiens is our desire. 

Hidden disabilities mean you have to make an effort to let others know there is no other way and you cannot leave that to anyone else.  each of us have at least one way of letting others know, it's unbelievable some are using pride as an excuse.  I understand some readers may get annoyed at what I am saying, but at least I take my own advice and let people know who otherwise would not.
« Last Edit: 28 Mar 2020 09:43AM by On the edge »

Sunny Clouds

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Re: Invisible disabilities

  • on: 28 Mar 2020 03:34PM
Whilst I think you make some good points, I don't see campaigning as necessarily having to have anything to do with charities, although it's nice if they join in.

That being said, as you and I have discussed before, charities vary massively in nature, and my experience is that there can be tax advantages to groups trying to make a difference constituting themselves as charities, depending on whether any of their activities might fall outside the legislation governing charities, whether as to what do or don't fit the requirements of charitable objects, or as to more recent provisions relating to political campaigning.

Most campaigns I've had anything to do with haven't been charitable.  Sometimes they've needed funding and again sometimes charitable grants can help, just as commercial sponsorship can help, but simple crowdfunding can often cover the basics.

I've seen how much difference community action can make in all sorts of places, be it the streets or the workplace.  Take a little thing - in some places plagued with speeding drivers, people wearing yellow vests use hairdryers as pretend speed-guns.  We've found round here that it can make it far safer for people to cross the road, which is disproportionately helpful for disabled people. That takes no different organising from community patrols to deal with excessive kerb crawling or drug dealing.



As for individuals letting others know, whilst that's the ideal situation, it's far easier for some than others.  If I get shoved over when people realise I'm disabled (and I've been physically assaulted more than once for claiming a priority seat on a bus, for instance) that's ok, but if I had brittle bones, it would be something else.  To pursue the bus thing, I notice big differences in attitudes on different bus routes, so it's not something that can't be helped in terms of public attitudes with signs saying something like 'if you don't need a priority seat, please sit at the back'.

Most of the time you can say you have a disability without its being a problem, but enough people get beaten up or exploited for me not to condemn people who don't come out.  It's like people who'd like various adjustments or help at home but should think twice what they should do to tell people.  For example, I don't put a sign on my door saying I can't hear people knock, because that would also tell the burglars they might well be able to break in without my hearing them.

Obviously some of the local burglars aren't subtle.  I can walk down my road and point at the houses that have had the front door smashed in by burglars.  At the same time, some burglars are more reticent.  So a note on the door saying something like 'we don't open the door to strangers, phone us if we're expecting you', works better.  A bit of creativity.

Following that line, I think it can also help to advise people to stop and think about how they describe their disabilities and where they say it.  Having trouble understanding when getting a service?  Maybe better in some public places such as shops or community centres or reception areas or ticket offices to say "Sorry, I can't hear you, I'm waiting to have my ears syringed." than "I'm deaf" or "Sorry, I don't seem to be grasping things today, I'm very tired after a late night" rather than "I've got early stage dementia." 

It's a question of context.  Say it where it's safe to do so, not where it isn't.

My guess, and I acknowledge I may be very wrong, On the Edge, is that you and I live in very different sorts of places.  I live in an urban area with problems with crime, including nasty assaults on minorities and nasty exploitation, particularly by county lines gangs, of vulnerable people.

On the other hand, we fight back, and we've currently got a project based on our community centre for helping people during the pandemic.  The crucial thing is that it's run with proper confidentiality, so if a volunteer delivers groceries, someone passing/watching doesn't know whether the person inside is vulnerable in some way, or potentially infectious.  That's the hybrid in the community.  Doing what you consider appropriate and telling people, but doing what I consider appropriate and being very cautious whom you tell and where.



(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

On the edge

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Re: Invisible disabilities

  • on: 29 Mar 2020 10:55AM
I live in an urban area, where drug dealers ply their daily business, homeless camp in their tents 500 yards away and alcoholics gather to drink their daily can of essentials at the public toilet, and, opposite the local police station.  So not completely unaware of issues of who to trust or to avoid.  Charity is dead, and basically I decided day one I wanted to be rid of it because like many other disabled (Not just the deaf who do own thing and DON'T want into the mainstream), I believe access and inclusion was a human right and not something dependent on endless campaigns by minority groups, with own personal axes to grind, and charities who don't really support rights because it is their 'business' to self perpetuate your reliance on them.  Benevolence is a word I hate. 

So if any 'campaign' is to be run it is to ensure the law ensures inclusion and access is there.  Currently, I gather 3 or 4 equality laws already exist, and none work if we are realistic or we wouldn't need OUCH, charity or focus groups.  It's really time we all understood that current pathetic and half-hearted approaches tinged with individual bias have to be got rid of.  I'm also NOT a fan of disabled running own support, I know this may annoy some people but it all goes with the same message of inclusion, and I am not confident like with like works all that well.  We were all sold a pup by the state who offered to  'enable' us all to do what we thought was best, this split us up into individuals and each did own thing randomly not helping at all. 

If the 'Deaf'area is anything to go by then their decimated charities are folding like a pack of cards because they were politically biased and motiviated but financially inept, in effect gone bust leaving 1,000 deaf with no help at all as a result.  Even the AOHL was bordering on bankruptcy beginning of this year and decided to CEASE deaf support approaches and concentrate on the 'Cure' instead. 

So sold off deaf home care to privatisation.  Some suggest that may be better as they can be held more accountable than charity is, who have some legal opt-out on criticism and immune from FOI's etc.. that remains to be seen.  There is no charity there are only 'not for profit' business. Although the rules don't apply to charity staff who command high wages so they can recruit more of US to work for nothing.  Lovely jubbly.
« Last Edit: 29 Mar 2020 10:58AM by On the edge »

Sunny Clouds

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Re: Invisible disabilities

  • on: 29 Mar 2020 03:17PM
I don't think our underlying feelings are very different.  Neither of us likes those that make disgustingly high amounts of money at the expense of exploiting others, and I don't like it when it's done in a charitable context any more than you do.

I don't think either of us likes it when people and organisations purport to speak for all people with a particular condition or in a particular situation.  Boy did I let rip along with lots of others not many years back when Bipolar UK ran an article "I'm not bipolar, I have bipolar".  Well, shove them, who are they to define me?  Do people lecture people with diabetes as to whether they 'have diabetes' or 'are diabetic'? 

The issue I think we're never going to agree on, is that we have, I think, different notions of what charities are, and what you, I think, see as the 'typical' charity, I see as a small proportion of high-profile charities. 

As I see it, a significant proportion of charities are low-key and do nothing except grant-making.  Another large swathe of charities exist as a vehicle for doing things that people would do anyway.

Charitable status is simply a tax category.  I was for many years the director of a charity which had premises and provided a range of community facilities and services.  Almost all the funding was public funding and charitable status merely enabled us not to be at a tax disadvantage, and ensured (since we stuck to the rules) that the trustees didn't line their own pockets, the 'profits' went back into the services.

Ah, yes, I agree with you that charities shouldn't be a vehicle for people to line their pockets and I think some of the salaries of senior staff are obscene, but then I'm an old-fashioned leftwinger who thinks that the salaries of managers in companies, of whatever sort, should be limited to a certain ratio of their lowest paid staff, including sub-contracted staff.

You could say that all the services provided by the charity I mention should have been provided directly by the state, but a lot of them weren't.  And even now, in many communities, the existence of charitable status enables people in a community to get together and provide a service or facility without the need to make a profit. The alternative is a Community Interest Company, which also has its uses.

I suppose the biggest gap between us is that I remain confused as to why you seem to consider a few high profile charities as representative of charities in general. 

But where I think we don't disagree is that we should have a fully and fairly funded welfare state and that people shouldn't need charity for basics or what I'll call reasonable, low-level luxuries, i.e. I think state help should go beyond scraping by.  I just don't see the need to get rid of that particular tax concession in contexts where what those using it are doing isn't about facilitating the government not providing a proper service, but rather doing extra.

______________

On the campaigning thing, I agree that our rights shouldn't be dependent on it, but I also think that public attitudes are an important factor and that public campaigns can help.
As we both see around us, making laws isn't enough, you have to persuade people that there are reasons beyond the threat of punishment to obey them.  Thus when I talk of things like campaigning and public awareness, I'm not saying that that should be a substitute for proper laws or for proper enforcement of those laws, just that I think that public information and attitudes have a large role to play.

___________________

So you and I may go at it hammer and tongs and maybe never agree about some things, but I think we agree about more things than we disagree about.

I'm rather unhappy about your description of the AOHL care home situation, though.  Not enough expletives!  Second thoughts, AOHL is a four-letter word, isn't it?
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Sunny Clouds

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Re: Invisible disabilities

  • on: 30 Mar 2020 01:15AM
Hang on, did I accidentally say I agreed with OtE about something?  This will never do - we've a reputation to maintain here!

I love discussing stuff with OtE, because whilst I think there are some things we'll never agree on, he always draws my attention to different perspectives on things or things my approach to disability issues, particularly D/deaf issues, may have missed out.

Keep shouting loudly at me, OtE, and I'll keep shouting back, and if we can't agree on everything, we'll just have to pretend it's because we misheard each other!
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)