Invisible disabilities

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Sunshine Meadows

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Re: Invisible disabilities

  • 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.

Sunshine Meadows

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Re: Invisible disabilities

  • 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.

KizzyKazaer

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Re: Invisible disabilities

  • 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<

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..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
« Last Edit: 09 Aug 2019 09:29AM by KizzyKazaer »

On the edge

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Re: Invisible disabilities

  • 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 :)
« Last Edit: 09 Aug 2019 11:41AM by On the edge »

Sunny Clouds

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Re: Invisible disabilities

  • 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.
(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: 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. 

Sunshine Meadows

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Re: Invisible disabilities

  • 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.

Sunny Clouds

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Re: Invisible disabilities

  • 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.
« Last Edit: 11 Aug 2019 07:59PM by Sunny Clouds »
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Sunny Clouds

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Re: Invisible disabilities

  • on: 11 Aug 2019 07:58PM
(My link wasn't working, I've amended it.)
(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: 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..

Fiz

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Re: Invisible disabilities

  • on: 04 Sep 2019 06:00PM
Sunny,

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


Quote
Four words:  leave, steamer, measles, courage
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?

100% agree.

Sunny Clouds

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Re: Invisible disabilities

  • on: 07 Sep 2019 02:46PM
I had some food for thought on this the other day.  A series of problems with a near-ish neighbour affecting quite a few people.

There's a local house that's been rented by a housing association that provides supported housing.  I've had ongoing problems with them blocking the pavement with bins and a car parked by a staff member.  I have repeatedly asked them not to block the pavement but the staff don't care. 

One one occasion, after asking them to sort it, I gave up and tried to get out into the road with my four-wheel trolley, a broken wrist (in a cast) and a sprained ankle.  I got stuck and fell over. 

Passers-by picked me up and I tried to get past by going out into the road and fell over getting off the kerb and was again picked up by passers-by.  All at once, people from the supported housing came out and faked concern.

Recently, there's been a skip outside and the other communal bins have gone, but there's still a clinical waste bin, and now the skip is gone, there are cars parked outside again, and lots of lights are on. 

I tried to get past and there was a car and I asked a man arriving at the building if he knew whose it was because it was blocking the pavement.  To say he was offensive was an understatement.  I pointed out there are various people using mobility aids locally (I listed four including a manual wheelchair user, an electric wheelchair user, a guide-dog user and a splayed elbow-crutch user.)

He stomped out and through the gap.  I pointed out he was taller and also had non-snaggable clothing and followed him so he could see how narrow the gap is if you don't want to rub up against a dirty car and mixed holly and brambles.  I didn't have my trolley.  I got part way through.  There was a sudden movement on my right from the hedge and I have peripheral vision problems.  I stumbled against the car and collapsed.  So far as I can tell, for the first time I can ever remember, I fainted. But I could simply have slipped on something.  What I'm entirely certain of is that it wasn't an ataxia fall.   

When I landed, I hit my head on the ground.  When I came to, the man had gone.  Very disorientated, I tried to crawl home along the road.  Yes, absurd, but with a bleeding head and feeling faint, and living just round the corner on an empty side road it seemed to make sense.

I was found by passers-by who picked me up.  I realised I was close by a house of someone I knew and they took me there.

I contacted the housing association who say it's no longer their property.  They gave me details of a property management company who say it's not theirs and they know nothing about it.  There's no record of a recent sale. 

But yesterday I noticed in the evening that there were lots of lights on.  There's no evidence it's a family home now.  So I think it's been re-filled with people needing support. 

Anyway, just think...

Umpteen times a day, they see people, including visibly disabled people, people with baby buggies, elders etc. going out into the road to get past.  It's a quiet road but as a result we get young speeders several times a day. But they think it's ok to block the pavement despite being repeatedly asked not to.

When I tell them one day I can't get past their bins and car and I'm visibly injured plus using a trolley covered in signs saying I have balance problems, they still think it ok to block the pavement.

When I fall over, they don't come to help until I fall twice and passers-by are forming a crowd, and even then they offer no escort or transport to get home.

When I collapse, whether they think I've tripped or fainted or even if they think I've faked it but they can see I've hit my head, which is bleeding, and I'm out cold, they just walk off and leave me.

Whether I'm visibly disabled, not visibly disabled but telling them I am, visibly temporarily impaired with existing injuries or collapsing for whatever reason and acquiring a new head injury makes no difference when they are cold, uncaring people.

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

Monic1511

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Re: Invisible disabilities

  • on: 07 Sep 2019 07:45PM
Hi In my area this would be sorted by complaints to the local council, ask them to send the traffic wardens round. blocking the pavements is also an issue for non disabled people, pushing a buggy down the road because of selfish parked drivers isn't fun.

Sunny Clouds

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Re: Invisible disabilities

  • on: 08 Sep 2019 10:59AM
Sadly, round here, that wouldn't work.

Round the high streets, the parking's governed by by-laws and wardens.  Elsewhere, e.g. residential roads, main roads etc., the parking's dealt with by the police.  Both have been understrength for years and despite pleas from residents, failed to nip pavement parking in the bud.  It's now the norm.  I even see driving instructors' vehicles parked on pavements.

The police shift them if they catch them parked crossways, i.e. front in drive, rear in road, but otherwise just don't have the resources.

It's reached the point that parking on corners, on yellow lines, along 'keep clear' white lines, in designated taxi ranks, across dropped kerbs etc. is becoming the norm.  The ones that make me angry are people who, near to me, park half on, half off the pavement along 'keep clear' lines around the entrance to an estate of blocks of flats.  They'd better hope someone they care about isn't stuck on an upper story whilst people run to knock up neighbours to form teams to rock cars out of the way to let the long-ladder fire appliance through.

I note that there are suggestions that a law could be brought in to make pavement parking seriously taboo, similar to the one in London, except it would be for the whole of England (not sure about the rest of the UK).  But it would take a hard-hitting advertising campaign, like the seatbelt campaign, to  make a real difference.

Which brings me back to my ranty proposition that a lot (albeit not all) of the adjustments we want and need because we're disabled wouldn't be needed individually at all if we had a societal attitude that was about being kind and considerate coupled with sufficient awareness.

Most ridiculous question by the rude man who, a bit later, saw me fall and just walked off, when I pointed out they'd got a severely disabled woman next door who wouldn't be able to get her wheelchair past the car, was  "Why would she want to?"

Yes, if you go everywhere by car, the notion that if you have trouble getting along a pavement you should simply go everywhere by car seems the obvious solution.

I'll bitch here and say "I bet he also thinks disabled people get too much money."  I.e. "I bet he thinks all disabled people can afford as many taxis or as much petrol as they could possibly need to go everywhere they want or need without ever needing to use a pavement to walk, wheel, be led or whatever.

On the other hand, it was better than his other comment about disabled people nearby - "Why can't they just go on the other side of the road?"  I've also been asked that by staff at a local psychiatric institution that were blocking the pavement.  Ditto owners of businesses half the pavement with their planters and/or A-boards whilst doing nothing to ask their customers and staff not to block the rest of it with their cars.  They all give the same response and all look confused when I say there's no dropped kerb there and/or that it's a dangerous spot to cross the road.

Niceness, oh for thoughtful niceness!

And yet every time I despair of it, every time I find myself in tears, I encounter some kindness.  The odd battle might have been lost but the war isn't yet.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)