Invisible disabilities

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On the edge

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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

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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

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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

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Re: Invisible disabilities

  • on: 08 Jul 2019 09:42PM
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'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...

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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!

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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

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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

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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<

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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

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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<

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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

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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

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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

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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.)

On the edge

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Re: Invisible disabilities

  • 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.

Sunny Clouds

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Re: Invisible disabilities

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

KizzyKazaer

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Re: Invisible disabilities

  • on: 22 Jul 2019 09:33PM
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You know what my 'strength' was today?  Resisting the urge to top myself.

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

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

Sunny Clouds

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Re: Invisible disabilities

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

Sunshine Meadows

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Re: Invisible disabilities

  • on: 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.