Invisible disabilities

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On the edge

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Re: Invisible disabilities

  • on: 23 Jul 2019 05:52PM
I hope it is okay to say I am enjoying reading this discussion. I just can't post much to it myself right now because of old family stuff. Thank you for bringing your thoughts here.

I wonder is there an age and financial aspect to how we are able to live. Also sometimes it can be just a matter of having someone who believes in you by your side. Sunny if someone had been with you and behaved in a caring way when you were either knocked of fell over the reaction of strangers would have been different. Strangely it can be seen as unacceptable to be as disabled and fragile as you have been and still go out and about on your own. You show a level of problem solving which some able bodied people find challenging because it means they can't treat you like a pet. Also there is a weakness in allsorts of people that means the judge behaviour by what their motivation would be to do the same thing. Its like a teenager who makes a big deal about boiling an egg or someone who stands next to their car looking helpless when they have a flat tyre. They deliberately remain childlike and act incompetent so other people will help them

OTE,

I can see where you are coming from but how do we manage the able bodied people around us who will judge us by how helping us or not helping us makes them feel about themselves.

I think by not assuming they are pitying us all.   Obviously, if you have an issue that isn't visible, then it goes down to individual assumption what the issue is.  I Just think going at people for not knowing the issue you have or what supporting it entails, we cannot 'blame them', its counter-productive.  I think that goes for hospitals too, 99% medics are only understanding your issue at a clinical level, its all they are paid to do.  As for inserting different approaches to hospital via particular issue need, would make them unviable there are millions of us and none have the same need, you can only generalise and that sets you up for angst from your own sector.  I just am standing away from all that now doing my thing getting what I need, it makes for less stress trying to be everything to everyone I and you would need another 24hrs in the day...  Can't say I have ever been treated like a pet really, they would not dare.... You have to be firm and accept others aren't perfect either.  I  never use the term 'able-bodied' at all, that looks like blaming everyone else to me.  Able-bodied have mental health, deafness, blindness, and Autism etc too... It's generalising really.... Disability awareness like the deaf version no longer is 'fit for use' or relevant in many respects.  It's what happens when we desert the herd and leave it so charities...  As I stated before, it's every man/woman or child for themselves now, its what the system waqs designed to do, aka divide and rule and isolate, keep us in fear, so we don't even trust each other..

Sunny Clouds

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Re: Invisible disabilities

  • on: 24 Jul 2019 08:29PM
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As for inserting different approaches to hospital via particular issue need, would make them unviable there are millions of us and none have the same need, you can only generalise and that sets you up for angst from your own sector.

If that's a reference to what I've said about hospital accessibility, most of the things that are needed in my closest general hospital weren't the problem they are in the previous building.

And the sort of things they should be doing would help lots of people.

E.g. old building - signs at approximately average head height for a standing person.  Colour coded lines on floor, walls, entrances to corridors, stairs, lifts, wards.  It doesn't just help people with visual impairments, it helps people with dyslexia and people unfamiliar with various sorts of medical  jargon.  Nobody seems to think it odd to put arrows on the road and in the past, they didn't think it odd to do it on hospital corridors etc.  So why change that to small font on very high up screens and signs, with lots of places with no signs at all?

People don't mind being asked to stay on the right when moving round the London underground, and standing on the right of an escalator is common practice, so what's so difficult about doing what is done in some buildings and not others and asking people to walk on a particular side where possible?

When I was in A&E and there was no where to sit whilst waiting in a queue for reception (i.e. where you'd have to go to ask for help getting a chair) you could argue that well if they didn't know they'd get a patient with ataxia, they couldn't know that a patient would need a seat.  For heaven's sake, even ordinary GP surgeries understand that a proportion of the population has difficulty standing for any length of time without even a grab rail.  It's not a tiny proportion, by any means.

You can't get into my local psychiatric unit if you're deaf except by shouting loudly and repeatedly and hammering on the door.  Why?  Because despite being asked otherwise, they installed an intercom at least 8' from the door with no 'speak now' and 'door unlocked' lights, so all you can do is to press the buzzer, shout "Deaf visitor!" and walk across to try the door, then go back to the intercom and repeat.  You've no way of knowing whether anyone's answered you. Yet the mental health trust likes to big itself up over its Deaf services.

Most of the things that would make my life manageable would be no  more expensive or time consuming to provide than the alternative.  Sometimes it would be win-win.  Sort out the congestion in the hospital corridors and then the emergencies can get through quicker as well.

Little thing - local older adult psychiatric outpatients (different building from one with intercom problem).  I tried to take Dad to the loo in his wheelchair.  Yes, there were signs pointing to the disabled loo.  The trouble is that the spring-loaded doors were at the wrong distance.  You couldn't get through the first before encountering the second, but if you were pushing someone, you needed to be able to get through the first door to open the second to get the wheelchair through.  Complicated manoeuverings involving tight turns, reversings etc.  Whoever designed it was in the wrong job.

And that isn't just a physical thing, it's a mental thing.  If Dad had been on his own, self-propelled and not needing me, he'd still not have been able to figure it out because of the very mental conditions they were treating him for.

Further, raising general awareness and making general changes to how things are done can make life better for everyone.  Enforcing bylaws insisting people keep dogs on leashes on pavements doesn't just help those with poor balance and eyesight, it helps everyone.  I shouldn't have to have a loudhailer or something as I go down the high street "Please don't trip me up.  Don't barge into me.  Don't let your dogs run around.  Don't let your children run around.  Don't step out in front of me suddenly to shove a Big Issue up my nose or demand change.  Watch out!!!"

Yes, I'm riled.

Most hidden disabilities are ones that wouldn't be as severe obstacles as they are if society were better organised and more considerate. 

Time and again, by the time I've shouted "Is there anyone in a priority seat that doesn't need it?  I need to sit down" and waited for people to ask themselves what a priority seat is and who should have priority and what business it is of theirs why I may need it etc. the bus has pulled away and I've gone splat. But if people that didn't need them only took them if no other seats were available, I'd have far, far fewer falls on buses.

You can't anticipate all people's needs, but an awful lot of them wouldn't be a problem if we designed a more accessible environment, which wouldn't have to be more expensive. 

The alternative may be.  After my A&E experiences, the next time I have an injury and I feel wobbly, I'm calling an ambulance, just so I can have somewhere to sit in A&E.

I know I'm off on one.  I was surprised how much this thread pressed buttons. 

Anyway, there you go.
(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: 25 Jul 2019 10:25AM
i am on the war path with our new buses, they are mini buses but the locked the nice wide door  and ask us to  climb through the  passengers door and balance to the back. first the  handle is now in the wrong place and old folk  or mums with child on the arm or mums with shopping for  family  have big big struggle to climb in. then when you balance to the back there is a  big chance to fall in the hole from the  big door. who designed it  is brain dead. sorry for this words.

Sunny Clouds

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Re: Invisible disabilities

  • on: 25 Jul 2019 10:47AM
I sympathise over the buses.  It's not like there's any shortage of well-adapted buses, so if people buying buses demanded them, other manufacturers would copy them.

One of our local bus companies is replacing older (not very old) buses with new ones that are apparently more environmentally friendly, using electricity partly and switching off the engine when stationary.

But they've changed all the priority seating so now there are no seats where you can sit sideways or backwards against a solid barrier/back/partition and hold onto something.  Therefore, if you've got a mobility aid (other than a wheelchair where you want to sit in the chair with your back to something in the wheelchair slot) you can't sit somewhere you can be sure of not falling off your seat (which I have done several times on buses).

Meanwhile, more and more of the new buses don't have a rail all the way across in front of the priority seats, and such rail as they have is so far away you need long arms.

It is possible to design better buses.  Some of their older buses were better designed, just as your older buses were better in many ways.

So I agree with you.
(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: 26 Jul 2019 01:17PM
I've seen an opinion piece in the Guardian called "Iím disabled. Please donít talk to me as if Iím stupid"  The issues it covers overlap with the issues here, but more to the point, the comments do and including contrasting viewpoints. 


https://www.theguardian.com/commentisfree/2019/jul/25/disabled-talk-stupid-confused-upsetting-older-people#comment-131388892

I found myself wanting to scream "What's wrong with being stupid?" or "You're disabled, people typically regard being stupid, i.e. having learning disabilities, as having a disability/being disabled.  You're implying it's ok to treat 'stupid' people like that, but not other disabled people.  No Heirarchy Of Impairment!!!"

At the same time, I thought she had valid points to make about not wanting to be spoken to patronisingly when people realise she's disabled.

Obviously I'd want to turn this round and say that the more society is disabled-friendly and inclusive, the less it will matter, because people won't need to go into 'this person's 'Disabled', aargh how do I deal with that?' mode.

But I'm interested in different takes on 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: 26 Jul 2019 01:25PM
I also found some comments under the opinion piece interesting.  Paraphrasing for those that don't want to follow the link...

A poster who is disabled and uses a scooter said that a neighbour who also uses a scooter told her to get out of her scooter in this nice weather, saying that she (the neighbour) takes the approach of 'use it or lose it'.

The poster said the neighbour isn't nice and this is effectively disability hate crime.

As I read it, it came across as one (less) disabled person saying to another (more) disabled person "This works for me, you should try it."  Well that can be really, really annoying, but I don't think saying what I'll re-paraphrase as "We're both disabled, this helps me, you should try it" amounts to a disability hate crime.  It's simply making a false assumption as to the level of disability, which I'd agree one shouldn't do. 

Obviously, we don't know the back-story or the relationship between them.  But it comes full-circle to OTE's original issue of whether you should need to tell people about invisible disabilities (insofar as I'd regard the difference between the levels of disability of the two scooter users as, shall we say, a invisible 'chunk' of disability).

Gosh, have I just admitted that whilst OTE and I disagree strongly on some things (thought not all, particularly as regards some non-disabled-led influential disability charities which I think we both actively dislike) I do like the way he prompts me to examine my views on things and consider lots of different perspectives.

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

KizzyKazaer

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Re: Invisible disabilities

  • on: 26 Jul 2019 09:28PM
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A poster who is disabled and uses a scooter said that a neighbour who also uses a scooter told her to get out of her scooter in this nice weather, saying that she (the neighbour) takes the approach of 'use it or lose it'.

The poster said the neighbour isn't nice and this is effectively disability hate crime.

Oh, how bloody ridiculous.  In my blunt opinion, viewing this comment in isolation, I'm glad said poster isn't my neighbour, she sounds a bit of a precious snowflake to me...Though as you rightly point out, we're not party to the history.  But if she's that prickly, she runs the risk of becoming a very lonely woman in the future!

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Gosh, have I just admitted that whilst OTE and I disagree strongly on some things (thought not all, particularly as regards some non-disabled-led influential disability charities which I think we both actively dislike) I do like the way he prompts me to examine my views on things and consider lots of different perspectives.

It does us all good to have our set patterns of thinking challenged sometimes, I do reckon  >thumbsup<

Sunny Clouds

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Re: Invisible disabilities

  • on: 26 Jul 2019 11:42PM
I hope I'm not taking this thread too far off its path if I use this as an excuse for a whinge.  The BBC3 series about what not to say to people.  I was horrified by the titles and after dipping into a couple, my prejudices were confirmed.

For those that haven't seen them, they're all about what not to say to people with various conditions and impairments.  I feel that even the  mere existence of the series may put people off saying things to people they think are disabled, thus making some disabled people more isolated.  As for the contents, interesting maybe but I couldn't stomach them.

I suppose that's why I'm big on systemic changes, making society easier to navigate, use etc. so it's less often the case that you have to declare disability or ask for extra adjustments, so people feel less awkward.

I hadn't really thought about it before, but for me it reduces the need to say "Please could you...?" 

It's such a horribly, horribly difficult balance, 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.)

huhn

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Re: Invisible disabilities

  • on: 27 Jul 2019 05:46AM
I just had last week a piss off , sorry for the words, someone on facebook send me something to share. it went how big heroes children are with disabilities are. I send back sorry you missed one point,  mums are bigger heroes, they  help this children to grow up and support them 24 hours for 365 days without  help. then it went quit, no more things  coming from this person. sorry I hate this type  of messages. when I come back from  seeing my little girl I send  some more on here.

Sunny Clouds

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Re: Invisible disabilities

  • on: 27 Jul 2019 03:18PM
Yes, it's easy to see disability just in terms of the person with the impairment/disability, not in terms of the people who help them.

The same is the case with helping/supporting friends/relatives etc. who aren't disabled but need help, e.g. baby needs feeding or whatever.

Combine the two and you can have very hard work.

I wasn't well-parented.  I loved my parents but they left me with a lot of problems (and they had problems of their own, so it went down the generations). 

I think maybe people like me that had parents that didn't parent well notice just how much parents that do parent well do, and can see how much extra work goes into it if you're a good parent for a child that needs extra support.  I have the same sense of admiration for partners who support each other.  (I'm single and don't do it myself.)

As for 'heroes', some disabled people get very fed up with this trope.  Seeing disabled people as heroes reminds me of something I was told by a teacher when I was sixteen.  If we 'put someone on a pedestal' they didn't ask to be put on, we have no right to complain if they fall off.  Applying it to this, if you're a disabled person and you're put on the 'pedestal' of being 'a hero' or 'inspiring' etc. then you're being set up to fall off, which isn't fair if you didn't ask to be on that pedestal.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Sunshine Meadows

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Re: Invisible disabilities

  • on: 28 Jul 2019 01:07PM
Sunny you have got me thinking about this more. 

I wonder if for some of us  our parents, the people we grew up with, siblings, teachers, doctors and neighbours all influence the framework we find ourselves living in. It can be like they fling a door open and say There is a whole world out there to enjoy why don't you do something' and then when you ask for help their response can be like ' Well if you can't do it on your own why are you making yourself a burden'. It takes a lot to break out of that type of programming. 

Its like if I got sponsorship and crawled up a mountain I can be seen as heroic, but if I crawl from the house to the car there are people who would question my motives eg say I am attention seeking, upsetting them or being stupid. That said my life in the Midlands is different and the neighbours that see me regularly seem to get I am differently abled. Hmm well there was the bloke that shouted at me when my dog growled and jumped on his lead after the man walked his dog straight at us  like he owned the pavement.

KizzyKazaer

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Re: Invisible disabilities

  • on: 28 Jul 2019 09:41PM
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Its like if I got sponsorship and crawled up a mountain I can be seen as heroic, but if I crawl from the house to the car there are people who would question my motives eg say I am attention seeking, upsetting them or being stupid.

And of course there will always be people who are just plain old rude, unpleasant and rather stupid themselves - and I don't mean they are lacking intelligence as in a learning disability, either!  (see Sunny's post #19)  Not sure if there is much help for wilful ignorance..

Sunny Clouds

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Re: Invisible disabilities

  • on: 30 Jul 2019 11:13AM
I think stupid's a difficult word because I think that in many contexts it's clear whether it's used to mean 'having low intelligence' or 'not using what intelligence you've got', but some people use it ambiguously, which I don't like.

I'm also rather obsessed over the issue of people who mock others for having  low intelligence.  In fact, I have a bit of a thing about intelligence, because mostly it's officially tested with a type of test that I think is more biased than either those drafting it or those typically using it accept.  I have a firmly held view that almost all tests people take (including academic tests, trade tests etc.) test first and foremost a person's ability to take that type of test.

At 11, I consistently tested at 140 or above on adult IQ tests.  I got a scholarship to an independent school but not on that (although it was academically selective and I did do well in the IQ-type tests) but on a book review I wrote.  But I have, over the years, realised I lack something a lot of people mentally attach to 'intelligence', namely much in the way of ability to absorb an understanding of things without having to have them explained or to analyse them in depth.  People then make rude comments about my thinking too much and I always want to scream "Lucky you that you can make sense of things without analysing at length."

I've lost count of the number of times I've said, or posted on forums, that it's about time whoever I'm talking with went back and looked at an intelligence bell curve.  All those horrible snobs that post under news articles, aargh!  It's not fair to expect kids who a couple of generations ago would have been locked up in institutions to get oodles of GCSEs.  So many people don't understand that the class 'thicko' or 'dunce' is brighter than lots of people who are now (forgive the term) released into the wild alongside us loonies that once upon a time would have been locked up for years like my nana.

So I'm touchy about 'stupid' as an insult, and also touchy about people who, with any impairment, say something that amounts to "Don't treat me as if I've got a different impairment because I'm better than them" as opposed to "Don't treat me as if I've got a different impairment - treat us as individuals with different needs."  It can be a fine line, and the article in question does, I believe, a better job of it in the article than the byline.

If ever I'm over-zealous on the 'don't be horrid to people with low intelligence' front, just give me what for!

---

Meanwhile, wonderful phrase by one person very close to me about another person very close to me - "She only hears what she wants to hear."  She'll ask you something and follow it up with seemingly endless variations on the same question.  You could think she doesn't understand, that she has rather low intelligence.  Actually, my guess is that it's around average.  But she just can't adjust her thinking fast enough to be receptive to a type of response she wasn't expecting.  Some would say she's being stupid.  I'd say she's the perfect example of 'stupid' being a problematic concept.

---

Meanwhile, I'll leave you with food for thought on intelligence tests...

It's a question from the 11+ in my town in my year (back in the dark ages).  I'm going to add my own questions:-

Four words:  leave, steamer, measles, courage

Official question:-
Which is the odd one out?

My questions:-
What is the official answer?
What might other 'correct' answers be and why?

I have yet to come up with anyone who could not put up a credible argument for any of the four words not being a justifiable answer.  Maybe you could be the one that can?

(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: 30 Jul 2019 01:33PM
oh, you are so  right.
 first , when i think this person is stupid , in  concept of  intolerance and maybe laziness, i say they are brain amputated. or there brain  is with not using  dried up to the size of a raisin.

and i have a similar problem. all my life i got  and get treated from people like that i am naive and stupid, some even  said this in my face.
 Even the welfare has put in the letter to the court that i am retarded and stupid and depressed , and with this  i am not able to look after my children. My psychologist  told me, i am nothing from it, it was only unacceptable to leave a  single person to look after 3 handy capped person alone without  support. and i was always asking me why  they  say i am retarded, i did my degree with 21 and normally others are 24. and i  was always  wondering why everyone needs soooooooooooooooooooooo long to  understand something or read.  i am only useless in everyday small talk, and  clumsy  i am also, and a lame duck ,but moving still on  2 legs and kicking that everything is done.and my  psychologist said, it is very rare to find a person with this high IQ and  most people can not deal with it and as a woman is this more difficult.
sunny welcome in the club.
 

On the edge

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Re: Invisible disabilities

  • on: 31 Jul 2019 11:14AM
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You know what my 'strength' was today?  Resisting the urge to top myself.

I'm so sorry you're fighting with that particular 'head demon', Sunny.  I suppose anyone who hasn't experienced it for themselves can never quite get the full measure of its impact - just like I can't fully understand what it's really like to be deaf, for instance.  Having an invisible disability oneself is no guarantee of total comprehension of another's invisible disability!

Re-reading the post by On the Edge, I'm sure no offence was intended, but it's plainly upset you greatly.  I was thinking about mental health and 'reasonable adjustments' and stuff earlier, as it happens, and one of the main problems with the business is the attitude of some that 'if your mind got you into it, then it's your responsibility to get yourself out of it'.  I could say more but might ramble too much as it's near my bed-time, so will leave it there...

I don't ever apologise for explaining my view.  Of course, everyone is different.  Likewise, it is unrealistic to expect every disabled person understands every other disabled person or their issue, no more than we can expect 'them' whoever 'they' are to understand something they cannot actually see, there has to be leeway here.  As regards to awareness, it's an impossible situation, I don't believe today awareness is viable or practicable to pursue in any 'group' context.  If we look online EVERY disability area is doing 'own thing' to raise own awareness a lot show (As I was told also), an unawareness of other people's.  Within my own area its a virtual war going on  about degrees of loss, labels, language usage, medical and issues of outright NON-acceptance of other diverse people within it, or to support them, its a microcosm of cultural angst I can do without and kills unity or awareness in a mad scramble to declare THIS is what we are, THIS is what we need etc...

If we are talking about taking the fight elsewhere then we all need to accept the diversity within disabled areas first.  It doesn't really help to declare I cannot do this but you can so you don't understand being applied TO us, I don't get that.  We all post as ourselves and from own perspective.  For unity to exist we accept the person next you may never understand what your issue is or what it means to you.  Just go for the understanding and acceptance and make compromise, disunited we are certain to find that any disability visible or otherwise will stay that way and little will change.  I can not recall in my lifetime, to be honest, a time when being disabled made you such a target of hate than I see now, and when being patronised was a more preferable option,  we really cannot afford to turn on each other or we are all lost. 

My disability and I do view it that way, many of my 'peers' do not, is mostly invisible, because partly I prefer it that way, and partly because I am told nobody likes a moaner who complains he has a disability but respects and supports those who do what they can for themselves, yep its unfair....  I often wonder what is the point of closed disability sites, a refuge? so we are all hiding here? passing mutual sympathy to the already aware (Or not in my case).  I can only state there are just 24 hours in my day and many 1,000s of issues that demand I accept be aware of and support, and I just do not have that time, I am just 1 person with one life. That isn't to say I don't care.

>edited to add paragraph breaks for easier reading - KK
« Last Edit: 01 Aug 2019 06:24PM by KizzyKazaer »