Ouch Too - a place for and about disabled people.

Forum => Talk => Topic started by: On the edge on 08 Jul 2019 10:17AM

Title: Invisible disabilities
Post by: On the edge on 08 Jul 2019 10:17AM
Is awareness impossible?  Given that those with them will do just about everything to avoid people knowing?    Mostly the real disability is lack of confidence, isn't it?  Can we really demand the mainstream accommodates those with them whilst resisting the need to be identified?  By definition people cannot 'see' the problem, so how are you going to self identify? Simply going on a chat show or TV program to explain people don't understand is not really helping or raising awareness is it?
Title: Re: Invisible disabilities
Post by: Sunny Clouds on 08 Jul 2019 04:09PM
I think you're right, there are enormous problems with the invisible disabilities thing.

Personally, the sort of things I think help in terms of how the media puts the message across about invisible disabilities are firstly the sort of documentary that doesn't take the approach 'they might be disabled because they might have such-and-such' but more in the general area of offering tips from some people with it to other people with it, so viewers without it just get some background knowledge that might seep in.

Also, there's the value of obituaries. Seriously.  The revelation that some public figure had a condition we didn't know about raises awareness.

However, if they do want to specifically raise awareness, surely more general stuff would help.  Little positive news stories.  E.g. a supermarket chain having a 'quiet' afternoon once a week for people who can't cope with noise and fuss.  Yes, it's free advertising, but maybe raises a bit of awareness.

Oooh, can I scream about a series I loathe?  BBC3 does a series posted on Youtube on "What not to say to..."  E.g. what not to say to people with autism or what not to say to blind people or whatever.  Aargh!  It's like saying "Don't say anything to anyone you think might possibly be disabled in case they take offence."

I'd rather see a general series on 'ways to be helpful to strangers' that emphasised helping without having to know stuff.  Sort of never assuming whether someone's disabled or not.  Then if they don't tell you they're disabled, what have you lost?

Not that in my current negative mood I have much hope of mainstream media running something as generally helpful as that.
Title: Re: Invisible disabilities
Post by: On the edge on 08 Jul 2019 07:31PM
I think you're right, there are enormous problems with the invisible disabilities thing.

Personally, the sort of things I think help in terms of how the media puts the message across about invisible disabilities are firstly the sort of documentary that doesn't take the approach 'they might be disabled because they might have such-and-such' but more in the general area of offering tips from some people with it to other people with it, so viewers without it just get some background knowledge that might seep in.

Also, there's the value of obituaries. Seriously.  The revelation that some public figure had a condition we didn't know about raises awareness.

However, if they do want to specifically raise awareness, surely more general stuff would help.  Little positive news stories.  E.g. a supermarket chain having a 'quiet' afternoon once a week for people who can't cope with noise and fuss.  Yes, it's free advertising, but maybe raises a bit of awareness.

Oooh, can I scream about a series I loathe?  BBC3 does a series posted on Youtube on "What not to say to..."  E.g. what not to say to people with autism or what not to say to blind people or whatever.  Aargh!  It's like saying "Don't say anything to anyone you think might possibly be disabled in case they take offence."

I'd rather see a general series on 'ways to be helpful to strangers' that emphasised helping without having to know stuff.  Sort of never assuming whether someone's disabled or not.  Then if they don't tell you they're disabled, what have you lost?

Not that in my current negative mood I have much hope of mainstream media running something as generally helpful as that.

My pet hate too 'what not to say to..' and '10 hints and tips when meeting...' etc what an annoyance it all is, and of course mostly,  it is posted online to closed 'disability' sites to the people who see these things as 'raising real awareness', charities are a pain in the bum with them too, they seem to have run out of valid ideas to promote awareness and they all repeat themselves till our eyes bleed.  The people who would most likely benefit by seeing these things (Or not, most is a downright lecture that turns even me off frankly), don't see them anyway, what IS the disability/Deaf drive to talk to themselves? Preaching to the already converted? perhaps someone can explain it to me?  Only by presenting yourself at POC (Point of contact), can you raise real awareness, and only then of YOUR particular issue and yourself, as for sure any mention/inclusion of 'me' or 'us' or 'disabled' or 'deaf' or the 259 other terms/disabilities and random issues and degrees, is bound to invite a plague of locusts on anyone who uses them in what is perceived as the 'wrong context' or 'not applicable to me', and it all sort of deteriorates into isms's, 'ics', 'pics'.. and 'nobody speaks for me..' etc...

Apologies if anyone was omitted but... It's time the disabled/deaf online got off youtube and social media.  'Coming out' isn't just for alcoholics.....  We could have a flag too  it's all the rage I gather....  I rather fear disability unity like the deaf version, is a total mess/myth anyway, its the age of the individual not the collective. Me, My Issue, what I need etc... of course, the system loves this, we divide ourselves saving them the trouble.  Even as the DWP hastens the death of our peers, '10 things you need to do...' takes a higher priority and gets more reads. We are trapped in our own conundrum, we need unity, but we cannot endorse it and still get what we perceive as own needs a priority.  The individual versus what passes for a community.   

N.B.  If you have been offended by any of this post, or disagree with the poster, at least it shows you are alive... even if you are going about it all the wrong way.
Title: Re: Invisible disabilities
Post by: KizzyKazaer on 08 Jul 2019 09:42PM
Quote
'Coming out' isn't just for alcoholics.....  We could have a flag too  it's all the rage I gather.... 

As far as I'm aware, 'coming out' has always been an LGBT(Q) sort of thing, with the well-known rainbow flag and 'Pride' marches, rather than for alcoholics - unless they happen to be LGBT(Q) as well ;-) but not to detract from the main issue, invisible disabilities and how they are displayed (or not) is a subject worth looking at.  I'm sure there will be more thoughts to follow...

Quote
N.B.  If you have been offended by any of this post, or disagree with the poster, at least it shows you are alive... even if you are going about it all the wrong way.

 >lol< we welcome disagreement as part of any debate on  OuchToo as long as it isn't personalised and abusive - which is very rare here!

Quote
We are trapped in our own conundrum, we need unity, but we cannot endorse it and still get what we perceive as own needs a priority.  The individual versus what passes for a community

With a myriad of disabling conditions themselves being so diverse, I don't know how we can achieve unity, invisible or otherwise...





Title: Re: Invisible disabilities
Post by: lankou on 09 Jul 2019 08:13AM
It is this type of disability that is invisible. (I have this patch on my motorcycle gilet.)

(https://www.antisocialtshirts.com/wp-content/uploads/2018/08/Warning-Does-Not-Play-Well-With-Others-Logo.png)
Title: Re: Invisible disabilities
Post by: KizzyKazaer on 09 Jul 2019 09:32PM
Now surely we're not supposed to deduce from the above that you are a bit of an unsociable sort of gentleman  >biggrin<

Quote
I'd rather see a general series on 'ways to be helpful to strangers' that emphasised helping without having to know stuff.  Sort of never assuming whether someone's disabled or not.  Then if they don't tell you they're disabled, what have you lost?

>thumbsup< anything to encourage more kindness to each other would be very welcome in these strange times we seem to be living in right now.  (I like the idea of a supermarket having a specified 'quiet time' as well...)
Title: Re: Invisible disabilities
Post by: On the edge on 13 Jul 2019 04:51PM
Now surely we're not supposed to deduce from the above that you are a bit of an unsociable sort of gentleman  >biggrin<

Quote
I'd rather see a general series on 'ways to be helpful to strangers' that emphasised helping without having to know stuff.  Sort of never assuming whether someone's disabled or not.  Then if they don't tell you they're disabled, what have you lost?

>thumbsup< anything to encourage more kindness to each other would be very welcome in these strange times we seem to be living in right now.  (I like the idea of a supermarket having a specified 'quiet time' as well...)

I have an autistic son and a born deaf partner with some MH issues.  technically both have invisible disablements.  Mum being more 'visible' as she uses sign language.  I tend to omit myself profound deaf as well as I always tend to suggest an image of NON-disablement initially to get an in first.  I don't find banging my particular disability drum gets me very far, what I tend to do is present regularly anywhere and everywhere as myself, THEN drop in 'By the way, I don't hear!' after. I still find making a big deal of my hearing loss is a negative approach, while there are people who will ignore you, by far most will not, and by showing willing I get considerable access to areas many other deaf do not because they don't have what is necessary, it isn't sign language, its not support even, or poor hearing either, what they lack and I appear to not to a lesser degree, is confidence, it breaks down barriers every time.  I do think lack of confidence is a primary reason so many disabled get disenfranchised, and it's not the disability that is a barrier, its our using it as an excuse, maybe to avoid stress but...  Perhaps the disability movement needs to cease the concentration on 'them and Us' social/medical ID angst, and discriminations, and address their own reluctance to step out of their comfort zone instead.  If you believe the onus is on everyone else to make an effort you will never attain inclusion or help others to attain it.  If I had adopted the 'position' of reliance/support on others I would never have attained the freedoms I have now.  Inclusion means NOT staying 'like with like' or insisting I cannot talk to you unless you provide this, that or the other, you have to take that chance first, its a negative demand anyway.  I suppose I am more willing to adapt and take risks, than some are, which is an issue perhaps in itself.  I feel my own 'allotted' area prefers to campaign without an end game at all, it's merely a means to an end to bolster and protect what they already have.  Some sort of obscure 'alternative' to inclusion,and others with hearing loss, I want no part in that. I'd hesitate to use the term this is a bit fraudulent but..
Title: Re: Invisible disabilities
Post by: Sunny Clouds on 13 Jul 2019 07:01PM
Sadly, OtE, not all invisible disabilities get catered for if you don't tell people you've got them, including many that really could be.

Taking a random example that comes to mind.  If there were a social expectation, reinforced by signs, that people wouldn't take the priority seats on buses unless they actually needed them, but would instead go to the back of the bus or upstairs, then lots of people wouldn't need to tell other passengers they're sufficiently disabled to need one.

If venues, including eateries, always made it clear whether or not they play background music, people with poor sound discrimination could simply turn up instead of turning up, finding they can't hold a conversation and going away again.

If it were less societally acceptable to push past others on busy streets, based on a greater awareness of the prevalence of balance issues, I wouldn't need to go round with a huge sign on my back warning people about my ataxia (not using that word).

If there were better awareness about vision, fewer people might think it ok to let their dogs and children simply run about without regard to the effect they can have when suddenly appearing in a field of view at the last minute.

If there were a better awareness that people can have both vision and hearing problems concurrently, much signage might be different.

If there were a better awareness of the practical obstacles posed by things such as psychosis, mood swings, obsessive-compulsiveness (not just OCD but also OCPD), anxiety etc. then maybe people would have to spend less time going round explaining why people with mental problems may need adjustments.

Oh, yes, OtE, had it for one moment occurred to you that confidence, especially in the face of the wholly unreasonable attitudes disabled people often face, can be tied up with people's impairments?

Maybe for you it's not entwined, but people can get a hell of a lot of hostility.  The level of hostility that people with issues like visions and voices get from some people as they try to go about ordinary activities is disgusting. 

And the obstacles placed in the way of people with things like retarded depression, severe anxiety, PTSD, manic disinhibition etc. by a society where there could be just a little more kindness and forward thinking are verging on cruel.

Little example - for the sake of having fixed time limits for fireworks - say Friday and Saturday nights between 8pm and midnight, could save a lot of people who've been in war zones (including veterans) a lot of distress.  To some people, PTSD is a joke, but if it's you that they fish out from under a hedge because people think fireworks any time between about 4pm and 2am any day of the week is fine, it's not funny.  A neighbour with a guide dog has mentioned to me that it's also problematic for dogs.

We could be doing a lot more just in terms of general adjustments.

Incidentally, I'm not asking where you live OtE, and I'm not saying where I live, but I wonder how far it might have occurred to you that how accessible locations, facilities, activities, events etc. are varies a lot from place to place?

It's probably obvious that I'm feeling very prickly here.  But quite apart from anything else, you appear to have missed the point that for an awful lot of people, probably at least 2% of the population (and if someone said upwards of 5% I'd accept it) confidence issues are part and parcel of the impairments they can't do anything about and need adjustments for.  Our society still shames people who admit to a variety of disabling conditions even, in many contexts, dementia.

And congratulations on being able to just turn up to places and then announce you're deaf and finding everything ok.  Nice one if you can work out how to get there in the first place, or if simply telling them is enough to get the help you need to communicate.

I'm aware that we've disagreed on some other things and therefore you may just think "Oh she disagrees with me on everything" but I'm now going to use a term I suspect you'll loathe, but I'm still going to use it - your post has, for me, the air of victim-blaming. 

And you are, right now, for me, the perfect example of why we need better awareness in society of invisible disabilities, and better general adjustments so that the people who are terrified of going out of their houses can actually get out and about without having to launch into explanations every time they need help.
Title: Re: Invisible disabilities
Post by: huhn on 14 Jul 2019 08:26AM
we have a new system in the hospital , what is driving a lot of people mad. you have to get a number and wait till you  can get writing in, then  later the same for the  pharmacy. problem with my little ones is  every 2 min  question when are they getting their things.  but blind people can not see it  and one time when a deaf person ask to  jump the ques people got very upset. and  comments is he can wait and i said, no way , you ask him to  put  his head for  1 hour and more right in the neck to look at the number, he does not hear the  peep. few said then to me , they did not think of it. I think to have  inclusion , is two  ways, first make  things easy accessible and second what got lost  completely over the last years is  take a step and help. a smile on the face with a helping hand is  more important then a  ramp and you are not welcome.
Title: Re: Invisible disabilities
Post by: Sunny Clouds on 14 Jul 2019 04:44PM
Ah, hospitals & communication...

I'm in England.  NHS hospitals are bound as are other organisations, by the requirements of the Equality Act, so should be making reasonable adjustments, which, given that one person in seven has some degree of hearing impairment, should include some general provisions.

However, NHS England (the body responsible for the NHS in England) has published a set of standards for accessible information, which is relevant to people with hearing impairments.

One thing they're supposed to do is to include on someone's record/notes information about their communication needs.

I can't get my local general hospital to do so.  They don't even pass the message on from reception to clinician.  I don't ask for many adjustments, the main one being that when they fetch me from the waiting room, they call my name very loudly whilst waving vigorously (taking into account my poor vision) and check that I've responded.

In the last five years or so, I've told A&E, radiology (X-ray clinic), radiology (brain scan clinic), physiotherapy, neurology, ENT, fracture clinic, bowel clinic, bereavement team etc.  Some of these clinics I've visited multiple times.

Not one single clinic has made a note of my communication needs whether in advance or when I arrive.

I'm due to see my neurologist again very soon and I'm absolutely dreading it.  I wrote down most of the info I thought he'd need as background last time and he insisted on asking me the same information whilst I was with him.  It was only afterwards that I realised it was so that his students could hear.  The decent thing to do would be to ask if he could summarise it out loud for his students or let them read it.

And despite my choosing perfectly acceptable words for things, he insisted on using different words.  That can really matter when you're struggling to pick out words.  E.g. if I say I have a 'strabismus' and the neurologist says 'squint', he's replacing a 3 syllable word with  one-syllable word that's not better technically and is harder to pick out.

It's not an exaggeration to say that for at least two weeks now, I've been starting to cry every time I think of that upcoming appointment.

And yes I'm going to go off on one again about the confidence thing. I don't feel confident I'll have an accurate conversation with the neurologist, and I'll know we're some way towards tackling prejudice when lack of confidence isn't seen as some sort of personal failing.

Maybe OtE is perfectly happy arriving in place after place and just winging it but I'm fed up with emerging from hospital appointments having barely grasped what was said to me.

And if they do again what they've done before and 'lose' me completely because they haven't passed on my communication needs, I'm going to my MP and maybe the press.
Title: Re: Invisible disabilities
Post by: On the edge on 21 Jul 2019 08:27PM
Sadly, OtE, not all invisible disabilities get catered for if you don't tell people you've got them, including many that really could be.

Taking a random example that comes to mind.  If there were a social expectation, reinforced by signs, that people wouldn't take the priority seats on buses unless they actually needed them, but would instead go to the back of the bus or upstairs, then lots of people wouldn't need to tell other passengers they're sufficiently disabled to need one.

If venues, including eateries, always made it clear whether or not they play background music, people with poor sound discrimination could simply turn up instead of turning up, finding they can't hold a conversation and going away again.

If it were less societally acceptable to push past others on busy streets, based on a greater awareness of the prevalence of balance issues, I wouldn't need to go round with a huge sign on my back warning people about my ataxia (not using that word).

If there were better awareness about vision, fewer people might think it ok to let their dogs and children simply run about without regard to the effect they can have when suddenly appearing in a field of view at the last minute.

If there were a better awareness that people can have both vision and hearing problems concurrently, much signage might be different.

If there were a better awareness of the practical obstacles posed by things such as psychosis, mood swings, obsessive-compulsiveness (not just OCD but also OCPD), anxiety etc. then maybe people would have to spend less time going round explaining why people with mental problems may need adjustments.

Oh, yes, OtE, had it for one moment occurred to you that confidence, especially in the face of the wholly unreasonable attitudes disabled people often face, can be tied up with people's impairments?

Maybe for you it's not entwined, but people can get a hell of a lot of hostility.  The level of hostility that people with issues like visions and voices get from some people as they try to go about ordinary activities is disgusting. 

And the obstacles placed in the way of people with things like retarded depression, severe anxiety, PTSD, manic disinhibition etc. by a society where there could be just a little more kindness and forward thinking are verging on cruel.

Little example - for the sake of having fixed time limits for fireworks - say Friday and Saturday nights between 8pm and midnight, could save a lot of people who've been in war zones (including veterans) a lot of distress.  To some people, PTSD is a joke, but if it's you that they fish out from under a hedge because people think fireworks any time between about 4pm and 2am any day of the week is fine, it's not funny.  A neighbour with a guide dog has mentioned to me that it's also problematic for dogs.

We could be doing a lot more just in terms of general adjustments.

Incidentally, I'm not asking where you live OtE, and I'm not saying where I live, but I wonder how far it might have occurred to you that how accessible locations, facilities, activities, events etc. are varies a lot from place to place?

It's probably obvious that I'm feeling very prickly here.  But quite apart from anything else, you appear to have missed the point that for an awful lot of people, probably at least 2% of the population (and if someone said upwards of 5% I'd accept it) confidence issues are part and parcel of the impairments they can't do anything about and need adjustments for.  Our society still shames people who admit to a variety of disabling conditions even, in many contexts, dementia.

And congratulations on being able to just turn up to places and then announce you're deaf and finding everything ok.  Nice one if you can work out how to get there in the first place, or if simply telling them is enough to get the help you need to communicate.

I'm aware that we've disagreed on some other things and therefore you may just think "Oh she disagrees with me on everything" but I'm now going to use a term I suspect you'll loathe, but I'm still going to use it - your post has, for me, the air of victim-blaming. 

And you are, right now, for me, the perfect example of why we need better awareness in society of invisible disabilities, and better general adjustments so that the people who are terrified of going out of their houses can actually get out and about without having to launch into explanations every time they need help.

I'm sorry if I gave the impression simply gritting your teeth and facing people down was the way I went, and the way everyone else can succeed.  I tend to assume disabled/deaf whatever, know the background to things and so less requirement to explain, we are supposed to be self-aware.  It took me 11 years in the wilderness first, mainly to realise I was the architect of my own isolation.    I  went deaf sat at home, for days, weeks and months on my own, and yes, I blamed everyone else for that too.   You have to analyse yourself, face your limitations, and not front it out, you have none... we do! Be quite brutal really, e.g. IS this my fault for not dealing with my own issue?, accept it's also quite logical to blame others. You need to ID your strengths, dump the guilt, decide what you want/need and go for it.  I don't think we can win on the 'invisible' thing unless you MAKE yourself visible, none of us, least of all me, is going to walk around with it tattooed on our forehead to let everyone else know.   People cannot make adjustments unless you make it clear what those adjustments are, and perhaps explain that will suit you, but it may well not suit the next person like me.  Disabled and others are obsessed with the terminology, they turn on you saying the term 'we' cannot ever under pain on death be used.  Then post statistics to bolster the cause celeb quoting everyone else... The problem is a challenge to the status disability quo, we aren't all the same and the powers to be a struggle if there is no 'uniform approach' or one size that fits all, it makes planning difficult, and supply and demand don't gel.  I know similar areas to my own with hearing loss, there are so many different alternative demands going in, only THE most visible are going to get the access they need.  The rest are squabbling to get their particular need in,  it's chaos at present.  In essence, the idea of a unified disability movement is an impossible dream.
Title: Re: Invisible disabilities
Post by: Sunny Clouds on 22 Jul 2019 08:57PM
Yes, people need to say things.

At the same time, there are still many, many things that could be done by society to reduce the need for it.

Why should I have to spend ages grilling people in priority seats over whether they need them, when a lot of them would have gone to the back of the bus or upstairs without any sense of being deprived of something if we had a culture that said leave those seats free unless you need them.

And just how visible do you want things?  There's only so much you can tell people about all in one go.

I got on a bus today.  Whilst I was trying to get a priority seat, the driver pulled away and I landed on the floor.  I don't have time to make people aware.  I need a more helpful culture.

I've had seven concussions in under three years.  One was during the many, many falls I've had on buses.  I now increasingly resort to simply sitting on the floor if there's no time to argue the toss over having a seat.  It's not that people aren't prepared to give up a seat, it's that it's not ingrained what a priority seat is.

It's like getting out and about. When my balance is bad, I rely on my four-wheel trolley if I've got shopping or even sometimes if I haven't.  I've had to be picked up out of the road several times where people have parked too far across the pavements in places where there are no dropped kerbs and I've lost my balance trying to get out into the road to get past the car.

What am I supposed to do when a car's parked across the pavement?  But a lot of the time, there's a thoughtlessness and a lack of basic awareness as to how much space people might need.

As for all your smug stuff about analysing your strengths etc. you clearly have expletive all idea of what it's like to have an expletive severe psychiatric disorder.

You know what my 'strength' was today?  Resisting the urge to top myself.

I cannot find non-moddable words to describe how offensive your expressed attitude is.
Title: Re: Invisible disabilities
Post by: KizzyKazaer on 22 Jul 2019 09:33PM
Quote
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... 
Title: Re: Invisible disabilities
Post by: Sunny Clouds on 22 Jul 2019 10:40PM
Yes, it's upset me.  Thank you for understanding that.

All this stuff about going out etc.

In three years, I've had 7 head injuries, one of which I still have symptoms from 2 years later.  I've had three broken bones.  I've had gashes.  I've had bruises.  I've had sprains.  Etc.

I've lain on the ground, even in the mud and rain, or gone flying into a shop display, or gone flying across the pavement to be caught by others, with people staring or laughing or even screaming "You faked that!"

I have repeatedly fallen off bus seats.

Before several of my symptoms went into remission recently, I went into a bad phase where for nearly 3 years, I was knocked over or fell over every third or fourth time I left the house.

While we're about it, I also have arthritis which I've had for about 35 years, mainly in knees, hands and shoulders.  It affects everyday things like sleep and writing and eating.

Although the night vision that necessitated the use of a white cane has been fixed, I still have significant visual problems, including eyes that don't co-ordinate, square-eye jerks (= nystagmus), poor 3D vision, eyelid tic that cuts in suddenly, a cloud that floats back and forth in front of one eye, a ripple effect along the outside of the other eye, making it seem things are moving past when they're not.

I have ligament problems affecting steadiness and safety when turning.

I battle what Kizzy aptly calls head demons.  Just going to hospital today left me repeatedly collapsing in tears for days beforehand.

I have an attentional memory disorder such as to have led, following brain scans, to repeated dementia tests.  My father's dementia had to get really bad before he got worse results than me.  I don't have dementia, but in everyday language, my attentional memory disorder amounts to being ditzy and distractable.

I cannot get through a day without pain or discomfort.  I stopped using painkillers because they didn't cut it so I gave up on them.  I emphatically do not criticise anyone that does use them.  I have a close relative on a cocktail of painkillers including morphine. 

I do not buy my groceries online - I buy them in the shops.

I attend exercise classes.

I walk to my GP surgery (approx half hour walk).

I have been on rallies and marches trundling along behind my granny trolley.  On one, at the end, I sat on a kerb and a kind police officer came over to make sure I was ok having seen me valiantly struggle to the end.  I usually go at the back just in front of the police van so that if I fall, I don't cause a pile-up.

Towards the end of my father's life, I was looking after him whilst struggling to cope myself.  At the very end, I visited him day after day in hospital despite repeatedly being knocked over in busy corridors.  On one occasion, someone pushed past me to get in a lift and I fell straight back, landed on my back, the lift doors closed either side of my waist and the lift started to rise.  It only moved about 3" before the safety mechanism cut in, but it was scary.

The thing is, though, what am I supposed to do?  Lots and lots and lots of people have balance problems.  I visited my father in one hospital and a very, very dear friend with another, both with dementia, not far apart time-wise, and in the one hospital there was neat, orderly pedestrian traffic flow and in the other, it was chaos.

I shouldn't have to keep telling people I have ataxia and don't shove.  Places like hospitals, shopping centres, public buildings etc. should have properly thought out pedestrian traffic flow.

Ok so people can't know exactly what my needs are without being told, but it's not much to keep dogs on leads, not to shove past others, not to park across dropped kerbs etc.

It doesn't fix everything but it makes the world more accessible.

And yes, I'm ranting.

You see, it takes me a lot of effort to get out and about, and I admit there are times when I get to the end of the street and turn round, go home and call a taxi or postpone my trip out.

I feel defensive, like I need to defend myself. Why?  Because I live in a world where so much is put down to a person's attitude or mental effort or whatever.  But it's not that simple.

I've seen both sides of this.  Frankly, when I think of some of the things I did as a soldier, most people wouldn't do them.

And now things are different.

But no disabled person should ever, ever have to be judged and found wanting if they find things psychologically difficult or if they say "A lot of the obstacles I face are wholly unnecessary and would cost people precious little effort to take away and thereby facilite a less disabled life."

So there you go, Sunny rants again.
Title: Re: Invisible disabilities
Post by: Sunshine Meadows on 23 Jul 2019 04:38PM
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.
Title: Re: Invisible disabilities
Post by: On the edge 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..
Title: Re: Invisible disabilities
Post by: Sunny Clouds on 24 Jul 2019 08:29PM
Quote
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.
Title: Re: Invisible disabilities
Post by: huhn 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.
Title: Re: Invisible disabilities
Post by: Sunny Clouds 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.
Title: Re: Invisible disabilities
Post by: Sunny Clouds on 26 Jul 2019 01:17PM
I've seen an opinion piece in the Guardian called "I’m disabled. Please don’t talk to me as if I’m 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.
Title: Re: Invisible disabilities
Post by: Sunny Clouds 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.

Title: Re: Invisible disabilities
Post by: KizzyKazaer on 26 Jul 2019 09:28PM
Quote
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!

Quote
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<
Title: Re: Invisible disabilities
Post by: Sunny Clouds 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?
Title: Re: Invisible disabilities
Post by: huhn 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.
Title: Re: Invisible disabilities
Post by: Sunny Clouds 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.
Title: Re: Invisible disabilities
Post by: Sunshine Meadows 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.
Title: Re: Invisible disabilities
Post by: KizzyKazaer on 28 Jul 2019 09:41PM
Quote
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..
Title: Re: Invisible disabilities
Post by: Sunny Clouds 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?

Title: Re: Invisible disabilities
Post by: huhn 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.
 
Title: Re: Invisible disabilities
Post by: On the edge on 31 Jul 2019 11:14AM
Quote
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
Title: Re: Invisible disabilities
Post by: Sunshine Meadows on 01 Aug 2019 03:04PM
Sunny,

Thank you for continuing to post it makes me feel less alone in how I think. 


Quote
Four words:  leave, steamer, measles, courage
No one ever explained to me how those questions worked and I can see allsorts of ways of making different answers to that question. For example, measles is a disease and the other three are the odd ones out. Hahaha I have such a odd brain which is okay because I learnt to live with it and understand me better. Of course after I did some Googling and simplified my process I realised leave is the odd one out because it has seven letters.


OTE,

You say a lot but I am not sure you take on board replies that say more than you expect to see. Can we take this off script for a little while. The advantage of having a invisible disability is that a person gets some leeway as to how much they reveal and when. The disadvantage to having a hidden disability is that a person can find themself feeling worse when they ask for help and don't get it. We each have to be careful we dont make assumptions about each others life experience because this can lead  to bad labels. Labels that can lead people to ask derogatory questions like 'Did you explain why you needed help are you sure the person knew you are disabled?
Title: Re: Invisible disabilities
Post by: Sunny Clouds on 01 Aug 2019 09:28PM
The official answer according to the exam board was 'steamer'.  French leave, German measles, Dutch courage.  I remember the question because it made the headlines in the local rag, or rather parental fury over 11 year olds being expected to have heard of Dutch courage and French leave did.

Possible other reasons (besides the number of letters...)

Courage has 'ou' not 'ea'.
Leave is a verb as well as a noun.
Measles is extremely unusual in being both a plural and a singular, and functioning grammatically as both.  You can have a measle (singular), several measles (plural) or [the] measles (singular).

That's just one argument for each and there are, as you'll have found, others.
Title: Re: Invisible disabilities
Post by: Sunny Clouds on 01 Aug 2019 09:46PM
As regards what seems to me to be a basic difference between OtE and me on this (assuming I've understood correctly his views), I get the distinct impression his location and lifestyle are different from mine.

I struggle to think of any day when I leave the house when I don't have to explain about my various impairments, including hearing.  Sooner or later, I need to tell people about my hearing, whether it's a shop assistant or a bus driver or someone on reception somewhere.

But different people live different lifestyles, live in different places etc.
Title: Re: Invisible disabilities
Post by: Sunshine Meadows on 02 Aug 2019 08:51AM
Yes and another factor is when and how a person became disabled. 

OTE.

When I was still working I kept finding the disabled toilet was occupied by an able bodied person so I complain. This led the Facilities Manager to put a sign up that said Consider Disabled People when you use this toilet. He had it in his head that telling abled bodied people not to use the disabled toilet would be discrimination. The stupidity of the situation I was in badly affected me because I could not get the managers at work to listen. After I put in a grievance a specialist in occupational health for disabled people immediately advised that the sign be taken down and that a universal lock of the type lock a RADAR lock was put on the door. I spoke up because I needed to keep my jobbut the thing is I should not have had to, after all I use a wheelchair. In this sort of climate I can see why a person with disabilities would be reserved in asking for help.

Helping disabled people get the help they need could start with the people who are buying goods and services being more open minded and knowledgeable. It can be as simply as adding a suggestion box in reception areas or making sure that buckets and mobs are not stored in the disabled loo.  

I am interested to know if you were in a queue and someone behind you asked if they could go before you would you let them? Now if that same person showed you a laminated card that explained the person had IBS would you let them go ahead of you. Finally if a different person who was in a wheelchair, dressed smartly, and young asked for the same help what would you do?
Title: Re: Invisible disabilities
Post by: Sunny Clouds on 02 Aug 2019 12:12PM
It's difficult, isn't it, all these different aspects?

I've just been ruminating on the 'awareness' thing OtE was (forgive the word) grumbling about.  He obviously hasn't seen my furious scowl when I go to my GP surgery and find yet another display based on this week's trendy condition.  Pink be-ribboned breast cancer awareness displays bother me.  Why?  In the past, I'd have said it was to do with the pink thing, what about men's breast cancer and why do we have to get all 'girly' over breast cancer not over other cancer.

But now I'm thinking that whilst they want the awareness for people to get checked, there is nevertheless that overall tone of "This week, we'll all be terribly aware of such-and-such."

What's the point in, say, a mental health awareness week?  Is it to tell us to seek help the help we need (which, thanks to cuts, probably isn't there) or to be nice to people with 'mental health'?  (Sorry, can't resist my standard growl over 'mental illness' becoming 'mental health' rather than 'mental health problem' or whatever.)

And I very definitely take on board something OtE wrote about clashes between all the different campaigns.

I suppose that's why I'm going for my usual 'try to please everyone' approach of saying wherever possible, let's make things easier for all.

For example, people from elsewhere know I get ranty about loos.  Yes, disabled loos.  But in the context of which sort of conversation?  Don't worry when I say what, just bear with me.  All the fury some women express as regards whether transwomen are real women and should be able to go in "women's spaces".  Often what is cited is loos.

I say I look at local loos in places like shopping centres.  If you got rid of the division between 'men' and 'women' with the separate corridors and separate, often over-sized handwash areas, or as I prefer to call them pointedly 'preening areas', often you could replace them with lots of individual loos in the sense of individual rooms, with a far higher proportion of multifuncion rooms with grab rails, space for a helper, drop down baby/toddler changing shelves and in maybe one in each block an adult changing shelf (probably the wrong term for it).

That approach would be win-win.  Those who complain women have to queue longer wouldn't have to queue so long.  Those who don't want to share with trans-whatever or homo-whatever could stop getting in a flap and just go to the loo.  Those who'd actually like to use the loo at all if only it was suitable would be able to.

Incidentally, I went to a loo in a local supermarket the other day.  Emblazoned with a range of logos all over the door, it was a wonder to behold inside.

Loo with oodles of rails and emergency cord.  Space for wheelchair.  Space for helper.  Both WC and urinal.  Changing surface (though  not big enough for standard adult). 

And you know what?  There were two of them and because they were for everyone, there was no waste of lobby space for male/female separation.

As regards radar keys - I'm all for them, but I only got mine by going online.  I have given keys to two older friends who needed them, one with cancer of her innards, and the other with appalling rheumatism.  Neither knew where to get them.

But I didn't need to prove anything to get them.

On the other hand, if you have a system where you can't get them without proving need, I'm cynical enough to think it'll be as bad as all the other 'assessment' processes we now seem to have for any help if you're in need.

Again, changing societal culture doesn't fix everything, but it's part of it, and at a community level it can be done in unison, not this group versus that group, this condition versus that condition.

Even in an office, whilst a radar key lock is an eminently reasonable thing to want on a loo door, general consideration is the other half of the equation.

Sorry I'm so longwinded at the moment. 
Title: Re: Invisible disabilities
Post by: KizzyKazaer on 04 Aug 2019 09:03PM
This is 'short and sweet' but... folks disabled and non-disabled alike are lucky to find any sort of public loo these days as the cash-strapped councils are closing them all  >erm<

..By the way, I share your irritation about the mangling of words around mental illness. 'Mental health problems' is presumably some half-arsed effort to make the whole business sound less fearsome - perhaps 'mental illness' conjures up too many images of dribbling, ranting, starey-eyed bonkers persons (that's me in a psychotic episode, that is. Well, perhaps not the dribbling)

Though I've just had a thought - and this was going to be a quick post  >lol<  - the above extreme example would represent a very visible disability, whereas 'mental health problems' could be used to cover a broader spectrum of people who are suffering in silence but still outwardly 'functioning' and looking 'normal', so to speak...

>edited to add
Title: Re: Invisible disabilities
Post by: Sunny Clouds on 05 Aug 2019 04:47PM
The main reason we've got no loos where I am is misuse.

We had old-fashioned Victorian loos in much of town, then gradually they were replaced and we had what I think of as tardis loos, which would look roughly oval from above.  They're quite good in terms of layout but since they're self-flushing including the floor, not good if you drop anything.  Ugh.

But people in various of them were using them for shooting up drugs, which was a problem because of needles being left behind, so one after another they've been closed.

I thought the usual method of dealing with that was to use lighting that makes things look blue so that veins don't look a different colour, but presumably the cost of adapting the tardis loos would have outweighed any profit for the private company operating them.  (I don't know quite what the financial arrangements were with the council.)

So people rely mainly on shopping centres, cafés and pubs.  Ironically, round here some of the cafés provide far better loos than the council ever did.

I oscillate between hope that society will improve at various levels on being more disability friendly and thinking it's a lost cause.  I don't know which, all I know is that if we stop fighting, it will definitely be a lost cause so all we can do is each do our bit, even if that's just the odd signature.

Or think about here on Ouch.  Not many members posting, but there are lurkers.  They've been able to read different views, drawing their attention to different aspects of this.  They've discovered that some focus more on a society-wide approach and some more on an individual approach, that some are up-front with needs, and some focus more on letting people get an impression before mentioning any impairments.  So even just posting here can make a bit of a difference.

A bit here, a bit there and who knows?
Title: Re: Invisible disabilities
Post by: huhn on 05 Aug 2019 06:19PM
i just found this, intresting, must be done more often.
Dubai: More than 60 children between the ages of 4 and 12 from across the country learnt basic sign language through an initiative by the Ministry of Community Development (MOCD).

The move was aimed at teaching children the basics of sign language and other techniques so they would learn how to communicate with the hearing-impaired.
Title: Re: Invisible disabilities
Post by: ally on 05 Aug 2019 10:50PM
Huhn, my granddaughter lives in Dubai.  She was taught sign language at her school.  She enjoys using it, so, Ive taught her more signs.  Now, we can communicate well.  I've used her as my interpreter on the occasions where I've been unable to follow the conversation.  She also has a good knowledge of deaf awareness, and, is quick to tell someone to face me, and, not cover their mouth,  while trying to talk to me.

Despite petitions over the years to teach sign language at schools in the UK, so far it has yet to happen.  Parents of deaf children have to pay for sign language classes.  The reason being,  that many deaf children have cochlear implants, so, it isn't always necessary.    Personally, I think teaching children sign language in schools, would help to break down the barriers between deaf and hearing.

When I first visited Dubai, I was nervous going through the airport security.  I was amazed when the  young man on security,  in full traditional Dubai kandura attire addressed me in BSL.  I've gone through many airports in the UK.  Not once has any airport staff  used sign language.  My life would be so much easier if the staff could sign.  I'm always whisked away to be patted down, as I can't go through the scanners.  My husband isn't allowed to be with me, and, I struggle to communicate. 

Imagine how much easier life would be for those deaf, if sign language was taught at UK schools, as it is in Dubai.
Title: Re: Invisible disabilities
Post by: On the edge on 06 Aug 2019 11:35AM
As regards what seems to me to be a basic difference between OtE and me on this (assuming I've understood correctly his views), I get the distinct impression his location and lifestyle are different from mine.

I struggle to think of any day when I leave the house when I don't have to explain about my various impairments, including hearing.  Sooner or later, I need to tell people about my hearing, whether it's a shop assistant or a bus driver or someone on reception somewhere.

But different people live different lifestyles, live in different places etc.

I don't claim to have an easier lifestyle.  My area there are people who do very well via systems, others who don't and me who does own thing and via own way regardless.  Its a long background story but basically (! sorry), the only way I was able to address issues were alone and diving in the deep end, obviously the first few (11), years were horrendous, riddled with depression etc,then I suppose some 'light bulb' came on and indicated the only way was through myself.  Ask any psychiatrist this is the only remedy they offer anyway, I just cut out the middle man/woman/whoever.

Instead of avoiding difficult situations, and taking time out, letting a few others help/take the strain, I went straight into these situations deliberately.  I'm sure most areas (Including fellow disabled), thought me crazy even aggressive at times, I just thought, what have I to lose? 

I am intolerant at times, I don't aspire to the 'accept everyone/everything' gig, either, which is an honest declaration we are all human too and don't hold a higher moral ground.  There are disabled I don't like, non-disabled I don't,  I am sure others who don't like me too, but this is the world.  I try not to go at people on a personal level.  You can not be held responsible for how everyone takes everything as everyone will have a different take on it.

Of course, we are ALL different in how we got to whatever point we are now at.  The mistake is assuming as yours didn't get there the same way, you have to disagree with it, in essence, it suggests we AREN'T accepting of diversity no matter what view we suggest to everyone else, problem is, it forces us to face reality, a lot are trying to avoid that.  Online you can be a Saint if you want.

Due to complaint, have edited the post so no longer in bold font - KK
Title: Re: Invisible disabilities
Post by: Sunny Clouds on 06 Aug 2019 02:41PM
Since this thread has now turned to 'shouting' in bold, I'll leave it to posters with better vision than mine to continue the conversation.
Title: Re: Invisible disabilities
Post by: KizzyKazaer on 06 Aug 2019 09:18PM
Hi Sunny

I wasn't sure how the bold font would be received so did not take immediate action (posts made in capitals are known to be read as 'shouting' so get edited straight away;  I've also amended long posts without paragraph breaks.) As you've effectively complained about the bold, I've now removed it - hope you can continue to participate in the thread.
Title: Re: Invisible disabilities
Post by: KizzyKazaer on 06 Aug 2019 09:32PM
Quote
Of course, we are ALL different in how we got to whatever point we are now at.

Indeed - and we are also all very different in how we deal with the realities of our present situations.  I think it's important to be tolerant of that as well.

Ally, I agree about sign language being taught in UK schools - if it's good enough for Dubai, why not for us here?
Title: Re: Invisible disabilities
Post by: huhn on 07 Aug 2019 07:30PM
i remember my children  had sign language in  Abu  Dhabi 20 years ago, they  learned it in the primary the alphabet. I think sometimes that Europe is  only seeing money savings short term and  are not welcoming new ideas. i remember  few years ago an report about integration of blind people in Africa. They were talking that the blind have in different countries  there own radio station and do everything and this one is not only for the blind community, it was pointed out that the radio stations are main stream ones.
Title: Re: Invisible disabilities
Post by: Sunny Clouds on 08 Aug 2019 12:41AM
Quote
Online you can be a Saint if you want.

??

Title: Re: Invisible disabilities
Post by: Sunshine Meadows on 08 Aug 2019 08:33AM
Sunny,

You make a good point about the availability of RADAR keys for toilet doors and in life there are always going to be people who break the rules or feel entitled. However I can't help thinking that a large number of people who did not need a key would feel some shame in using one without good cause. For me getting that key for disabled toilets was part of my journey in accepting my disability.

OTE,

Whenever I go to a more general area of the internet I never let people know I have disabilities unless I need to as part of the reason I am interacting.  This is partly because I am aware I need to keep myself safe and also because what I am trying to say can easily get lost when people look at me more than they do the ideas I want to post about. It has nothing to do with my none acceptance of diversity, it is about my freedom of choice to define what I say and when and where I say it.
Title: Re: Invisible disabilities
Post by: Sunshine Meadows on 09 Aug 2019 09:20AM
Apologies if this has already been covered but I was thinking about hope and how it can be a fragile thing for a sick and disabled person. Sometimes I keep going because I hope things are going to get better and this used to mean I did not ask for help enough and expected very little from others. In the past few years going to counselling helped me see I had a right to ask for and expect help from others. Eventually I began to try to talk to my sisters about things and their response was shocking, and not in a good way. Had I not had the support of my counsellor and Mr Sunshine I would have gone under because hope would have been snuffed out. On the other hand sometimes life can just surprise you as it did me one day last week. I was out and about and my wheelchair wheel got stuck against the door frame of a shop door. A rather large lady who had been making her way to the door ro go into the shop, stopped and said Would you like my help? At first I was dumbfounded thinking omg I am stuck. The lady asked again Would you like my help? I replied Yes please. By this time someone from inside the shop was behind me helping. The lady in from bent down and lifted the front of the wheelchair up with me still in it and the other person helped from behind. The wheelchair popped out like a cork with me in it. I thank everyone and especially the lady who had been in front. now the interesting thing is as I write this I am avoiding saying the large lady because it seems unfair to define her on appearance like that but it is what people in general do.

Next time I go out my level of hope will be high and so it will be easier to be seen and also to ask for help if I need it. In the circumstances of life Sunny and others have described over the years here on Ouch Too I think a lot of people do very well to keep hope alive and not just stay home.
Title: Re: Invisible disabilities
Post by: KizzyKazaer on 09 Aug 2019 09:27AM
Quote
The wheelchair popped out like a cork with me in it.

Sorry, but that wording - and image it conjured up -just made me  >biggrin<

Quote
..the interesting thing is as I write this I am avoiding saying the large lady because it seems unfair to define her on appearance like that but it is what people in general do.
If you don't know a person's name or anything else about them, it's entirely reasonable to describe them based on what you see, I reckon - but another interesting thing could be:  would you feel as uncomfortable if you were writing 'the thin lady'?

As for hope, I think most people hold on to it in varying degrees because without it, they'd just throw in the towel, wouldn't they?  But it certainly makes a difference to have at least one person in your life who gives a damn about you..

>edit to add
Title: Re: Invisible disabilities
Post by: On the edge on 09 Aug 2019 11:40AM
Oh dear I seem to have fallen foul of using bold in post! it just confirms the chaos we are all in really being over-sensitive and paying more attention to the typeface than the content.  This site ISN'T social media is it?  (Which most of us should avoid like the plague really for our own well being).    On my own blog e.g. I always use bold, but that is not for shouting it is the format that makes it more easily readable there, especially when covering e.g. deaf-blind posts where it is bold, large text, and in colour.    Bold isn't shouting as I understand it UNLESS the type is deliberately capitalised too.

THIS IS SHOUTING, this isn't.  I'm unsure this site is knowledgeable enough to debate pros and cons of sign language use, it's an area of major conflict within own areas. Anyone who wishes to engage in such debates need to log on to the relevant sites really.  You will only get my view of it from me obviously.

As regards to disabled loos I have never used one, I'm not really in any position to comment on them.  My area has closed near ALL publicly accessible loos so disabled or not you need to really plan your visits!  Like most deaf people we lack the need to use them.  Our disability (Or not! yer pays yer money etc), is sensory more than physical, there are numerous areas of the deaf (and disabled), people who deny any disability exists at ALL, in that its caused by others failing to include them.  Another few million hard of hearing who insist it certainly is because of the plethora of support they need and the obvious conundrum being deaf sign users having the most need of that support.

Deaf tend to be clever really, we say it isn't help, support, or a special need, its 'empowerment' a 'culture',  and a 'right'...  we rebranded it, we created an elite too via capitalising the term, and making sign language a saleable commodity.  I'm sure Kizzy and others can debate support/help and what that has to do with disability rights :)
Title: Re: Invisible disabilities
Post by: Sunny Clouds on 09 Aug 2019 01:36PM
It seems to me that whatever I post when OtE starts a thread, however hard I take an approach of "this may be your view, mine is different, but I think largely the difference can be accounted for by context, personal experiences and linguistic differences", I still find myself on the end of what feels to me like aggression.

However bold may be used elsewhere, it's not the norm here, therefore it was reasonable to infer that it was being used to make a point, and I do not believe that that point was clarity since to my recollection no one  here has ever suggested they need bold to be able to read.  On the other hand, it did make for time trying to adjust my assistive software before giving up in despair.

To be accused of being 'over-sensitive and paying more attention to the typeface than the content' when the point was I couldn't read the content is offensive to say the least. 

I think I had better withdraw before I express myself in the terms I'd like to, which Sunshine or Kizzy would probably feel obliged to asterisk or delete.
Title: Re: Invisible disabilities
Post by: KizzyKazaer on 09 Aug 2019 06:54PM
Quote
Oh dear I seem to have fallen foul of using bold in post! it just confirms the chaos we are all in really being over-sensitive and paying more attention to the typeface than the content.

My decision to remove the bold had nothing to do with anyone being 'over-sensitive'.  Sunny pointed out it was causing visual problems for her, so this called for some editing.  If people just post in normal default type, as the majority of members do, and use the bold, capitals etc sparingly to emphasise a particular point in a post, there really doesn't need to be an issue about this. 
Title: Re: Invisible disabilities
Post by: Sunshine Meadows on 10 Aug 2019 04:04PM
Over The Edge.

Why are you being such a dick? (exception to name calling rule just for this occasion)

Kizzy,

>biggrin<

And good point about if the lady had been thin, it does give me more to think about  >thumbsup<


Sunny,

You have done nothing wrong and in fact you showed what some disabled people are up against when it comes to stating invisible disability. OtE's lack of consideration goes al the way back to 2011 when I created Ouch Too and he insisted in posting in capitals causing Sofie to leave. A gentleman or hey a man would have apologised to you, and thanked Kizzy for the edit. Everyone makes mistakes but it is what happens next that matters.
Title: Re: Invisible disabilities
Post by: Sunny Clouds on 11 Aug 2019 07:55PM
Rather than offer more of my views, I'd like to link to an article in the Guardian

https://www.theguardian.com/commentisfree/2019/aug/09/disabilities-invisible-prove-stangers-disabled-services-illnesses#comment-131852084

The basic premise of the article is that the author doesn't feel she should have to say that she has invisible disabilities if she needs to keep a priority seat on public transport. She doesn't offer any solutions, and personally I don't think the article is as well-written as it could be, but the comments after, of which there are many, explore some of the issues we've been addressing here, and come at it from various angles even, in places, completely opposing views.

Aspects of disability priority other than priority for seating are also mentioned by some posters.

But be warned, there are lots of comments.
Title: Re: Invisible disabilities
Post by: Sunny Clouds on 11 Aug 2019 07:58PM
(My link wasn't working, I've amended it.)
Title: Re: Invisible disabilities
Post by: KizzyKazaer on 12 Aug 2019 09:35PM
Wrote a post and managed to delete by accident >scream< - so will say for now, thanks for posting, Sunny.  I'm up to page 2 of the comments..