Invisible disabilities

  • 9 Replies
  • 262 Views

On the edge

  • *
  • Gold Member
  • ***
  • Posts: 97

Invisible disabilities

  • 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?

Sunny Clouds

  • *
  • Charter Member
  • Hero Member
  • *****
  • Posts: 4784

Re: Invisible disabilities

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

On the edge

  • *
  • Gold Member
  • ***
  • Posts: 97

Re: Invisible disabilities

  • 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.

KizzyKazaer

  • *
  • Global Moderator
  • Super Hero Member
  • *****
  • Posts: 8707

Re: Invisible disabilities

  • 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...






lankou

  • *
  • Charter Member
  • Hero Member
  • *****
  • Posts: 2935

Re: Invisible disabilities

  • on: 09 Jul 2019 08:13AM
It is this type of disability that is invisible. (I have this patch on my motorcycle gilet.)


KizzyKazaer

  • *
  • Global Moderator
  • Super Hero Member
  • *****
  • Posts: 8707

Re: Invisible disabilities

  • 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...)

On the edge

  • *
  • Gold Member
  • ***
  • Posts: 97

Re: Invisible disabilities

  • 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..
« Last Edit: 13 Jul 2019 04:56PM by On the edge »

Sunny Clouds

  • *
  • Charter Member
  • Hero Member
  • *****
  • Posts: 4784

Re: Invisible disabilities

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

huhn

  • *
  • Hero Member
  • *****
  • Posts: 878

Re: Invisible disabilities

  • 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.

Sunny Clouds

  • *
  • Charter Member
  • Hero Member
  • *****
  • Posts: 4784

Re: Invisible disabilities

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