AIBU in wondering why many people don't have any idea about invisible disabilities?

[KhloeKardashian]

I can so identify with the people on public transport misjudging and the dirty looks. What is wrong with people that they tutt and judge like that.

//www.huffingtonpost.co.uk/adrian-grist/the-trouble-with-looking-healthy_b_4939297.html?utm_hp_ref=uk

Even friends don't seem to get it.

There seems to be a lot of people around with very low IQ when it comes to emotional intelligence I guess and they just can't help it.

[InsertAwesomeNickname]

Liz I agree to an extend. Tutting and rude comments are uncalled for but is questioning? I've known able bodied people to use those seats. If someone with an invisible disability was sat in a designated disabled space would it be Ok for someone with a visible disability to query.

I've seen this happen twice and both times the response was uncalled for and quite rude

[InsertAwesomeNickname]

Extent

[LadyMaryLikesCake]

Oh, Khloe Maybe your low self esteem is caused by people not hearing or helping you? Ds has GI problems too, they are made worse when he's stressed or unhappy. Are you getting some help now?

[KhloeKardashian]

People do it to children with invisible conditions, they have done it to my children, who after that happened I taught how to handle the situation. I have taught them to take out the card covering their disability and show the person, then give them a long hard look, which they have used since!

[AmberLeaf]

Most people, as has been said, don't have much knowledge about any disability, unless they have personal/family experience. Why should they?

There are lots of things that I don't, nor my family/friends, have any personal direct experience of. That doesn't stop me from knowing about, or being interested in knowing about things though.

You're right about people and their own little bubbles though, that is their choice though.

Ignorance is one thing, wilfull ignorance is another though, some people just dont give a shit because they don't want to.

[KhloeKardashian]

LadyMary yes I am slowly, I have to fight every step of the way for myself via the NHS. The NHS have failed the children very badly, they are only getting help as I located and paid for private reports to advice the NHS, who then referred the children, took ages as they kept making mistakes I had to keep pointing out, apologises etc... and then the children finally got referred on the NHS, it is ongoing. It is every agency that has done this though, they don't keep accurate records, don't information share properly and misdiagnose, and you get mistreated, education seem to view the extra funds they get as their budget not the childrens and want to take the extra money and not spend it on the children for what the Dr's and OT's say they need. They downplayed the children's needs both education and medical for years, I was not able to get any DLA as a result for the two children or myself. Looking back now, I would probably be entitled to carers allowance for certain periods of time and I didn't get any of it.

[tallulah]

My son is in his early 20s and looks like a normal healthy young man. He has ADHD, a kneecap that slides off and now has kidney problems. He is waiting for an op for the kidneys and for the knee. Some days he has no problems at all and is capable of walking and running everywhere. Other days he is crippled with pain, is frequently sick and has severe difficulties getting about.

He has been challenged on the train for being in the disabled seat - usually by elderly people or mothers with prams. He has a disabled rail card which he gets out to show them. I've been on the bus with him (I was recovering from chemo at the time so we were both in priority seats on an almost empty bus) and seen elderly women glaring at him and tutting. (but aren't brave enough to speak to him directly). When he was well he was always the first to leap up and offer his seat if he saw someone who needed one - seems karma is a lie.

Sadly he has also been caught short and had to vomit in the street (he gets no warning) and had cats bum faces and comments from passersby. Yes I know it isn't very nice to see but there is never any concept that he is ill and not just drunk/hungover. People just see a healthy looking young man acting unreasonably.

[ChocolateSnowflakes]

It's very frustrating. I have a 'hidden' disability and regularly get filthy looks for sitting down on the tube. I often feel so uncomfortable from the dirty looks given by (equally healthy-looking) people that I make a point of offering my seat up to those who visibly need it even if I'm in pain.

[LadyMaryLikesCake]

Sounds familiar, Khloe. Ds had one physio give him a sick note for PE, 3 weeks later I was told by another I was causing his pain because I wasn't letting him do PE He gave ds gaitors to pull his calf ligaments which caused excessive pain in his legs for the 2 seconds he wore them. I took him to a private physio for an assessment and was told never to use them as they would snap his ligaments. It took years for him to be diagnosed, the whole thing was a joke.

I hope you find a way through this. It's worse enough trying to live, but to battle too is just exhausting

[KhloeKardashian]

The oldest is nearly sixteen. She can't wait, she was refused finger splints last year. She says the first thing she is going to do is ask the GP for them. She did the exercises and her fingers are in so much pain from bending backwards. She and I were powerless as she was a child, well she is out of their power soon and they can't threaten me anymore. We both feel very happy about that.

[Nomama]

Amberleaf - that is sort of what I was saying. But I don't think it is reasonable to expect people to educate themselves according to your/my needs.

But I do have a range of coping strategies myself. I am often bumped, walked through and pushed out of the way if I am being a bit slow on a given day. I don't expect anyone to know I have mobility problems, I don't look as though I do.

[KhloeKardashian]

Lady I have never been so scared as I have been, being the parent of a child with a disability when professionals are ignorant of the condition. You are powerless and you have to sit back and let them harm your children and it is the worst thing in the world. I have evidence that many professionals have harmed my children and neglected them now. IF it had been me, it would be threats like you got from the Physio, you are powerless and they are powerful and they cause harm. Then you get the general public giving you a hard time too.

[AmberLeaf]

Nomama, I get what you are saying.

I don't expect people to educate themselves according to the needs of others, but I do think they should [if that isn't too much of a contradiction!]

[ProudAS]

Glad someone has raised this issue. I have Aspergers and often feel overlooked. I also have back problems (which I do not consider a disability but standing for long periods or on a moving bus could change that ). I was always ready to offer my seat before the back problems flared up despite my balance not being 100%.

And then there are the individuals who seem to think that I could snap out of the Aspergers if I really wanted - I spent 20 years trying FFS.

[ouryve]

EDS, Khloe? And there's no wonder you're feeling crap about people's attitudes - that couple in Homebase assaulted you.

In my 20s, I could and did stand on a bus, pretty much every day. Sometimes my knee hurt, sometimes my back hurt, and sometimes my hips locked up, but at that point, it was just one of those things. Having 2 kids and hitting perimenopause has knackered me, though. I was diagnosed with HMS 2.5 years ago and both of my boys are hypermobile and suffer a far bit of pain in certain circumstances. People probably think I'm putting my limp on, as it changes almost by the day, according to which combination of knee, foot and hip is hurting the most. I can no longer stand up on a bus, so I've taken to sitting in the high up captain's seat, beside the driver's seat, because I can get into it easily and sort of throw myself out of it, so long as my knees are bending today and oldies tend to avoid it because it is up a high step, so I feel no guilt at not giving up a seat for someone a generation older than me. I can walk miles, but can not stand still for any length of time and my hands are no longer able to grip onto a pole. Forget those overhead straps. I can't get my arms up there.

[thornrose]

My dd looks like a "typical" 14 yr old. She has Aspergers and dyspraxia. She finds it very difficult to balance standing on a moving bus or train especially as she mostly stands on tiptoes. If I give her a seat and stand we get the "looks" or comments.

She also finds supermarket shopping hell, she can cope if she wears headphones and is plugged in to her iPod. I've had "well meaning" people suggest she helps me pack my shopping instead of listening to her music! She sometimes sits down at the checkout when it all gets too much and I know some people think she is some entitled, lazy teen

[ChronicChronicles]

I too have Ehlers-Danlos Syndrome, and have got to the point I don't want to go out - although I'm mostly housebound anyway.

I'm an electric wheelchair user most of the time, and some people will open doors and step out the way. But often they don't, or if I'm in a queue will step over me like I'm not there.

One of the original reasons I started using walking sticks was as a signal to other people. (Don't get me wrong, it was needed for lots of physical reasons too!) When on sticks things like opening a door makes me so beyond grateful. Once in Homebase a member of staff offered me a chair and for someone to help me grab an item. I was so grateful I cried, and wrote to thank them. Wouldn't it be lovely if this was normal!

I have spent the last four years running a group promoting accessibility for people with disabilities. It's like banging my head against a brick wall, and I just can't do it anymore. I would say in my home town 75% of shops are totally inaccessible to me in my wheelchair, 20% are awkward but just about possible and 5% decent. And that's just for one type of disability.

So my whole point is the basics aren't there for the most obvious disabilities, let alone invisible. Until it happened to me I had no idea how much things like pain and fatigue can impact on your life. "But everyone gets tired!" I do hope this attitude changes in time.

How often do you hear judgements about people using blue badges? But they got out the car and walked off without a problem! In the early days I did that too. I had no limp, no stick. I look healthy. But you should have seen me when I got back...

[manicinsomniac]

I see your point but I do think that there is a danger that we could become too aware of invisible disabilities and stop judging anybody who uses disabled seats/toilets etc.

Most people who appear able bodied are able bodied. Many selfish, thoughtless people take up facilities designed for those who need them and don't appear to feel guilty about it. They should feel guilty. The last thing they need is free rein to continue their behaviour because society at large becomes so tolerant that it assumes they must have an invisible disability, which is statistically pretty unlikely.

So, while I can see how annoying it is to be somebody suffering from an invisible disability, I think a general 'benefit of the doubt' attitude to everyone would be a bad thing.

[CrohnicallyChanging]

chronic that's one of my bugbears, people don't understand fatigue at all! Even my GP didn't when I was trying to explain to her just how crap I currently feel- she said 'well of course you're tired, you have a small child'. Even though I pointed out I actually felt better when the small child was a newborn and I wasn't getting any sleep.

As for wheelchair accessibility- I didn't realise just how bad it was until I had a pushchair to push (I know they're not the same thing at all, except if I can't get somewhere with the pushchair then there's no way a wheelchair would manage). Even some of the bigger shops like Aldi are guilty of putting things like bins of goods half way down an aisle so there's not enough room to pass. As for the smaller local shops- one is a no go as it's so small and cramped 2 people can't pass in the aisles, and the other is much better inside but has steps outside. So not quite sure what a person in a wheelchair is supposed to do if they need bread or milk on a Sunday when the supermarkets are closed.

[RahRahRasputin]

I'm with manic, given how widespread the abuse of disabled facilities is, I suspect it's still more likely that someone using them who doesn't look disabled, isn't. I'd be perfectly happy to be challenged when using the disabled loo, on the way out anyway I find my condition very embarrassing but I have a little card that I can show, or usually just saying "I've had bowel cancer surgery" would be enough. I think just a general, polite, challenge would be fine, as long as someone wasn't aggressive or confrontational, and they accepted when someone had a disability or medical condition.

The seat issue is tricky. I get more tired than normal but I'm in no way disabled, so I would happily give my seat to someone who needed it, though I'd secretly hope someone else would. But I couldn't know that someone had an invisible disability unless they said so.

chronic complete agree about the blue badge thing. I can only assume it's jealousy or resentment. People are deluded if they think you just say "I'm disabled" with no evidence and then magically get handed a blue badge I met one woman who claimed this had happened to her I'm pretty sure she was being rather economical with the truth.

[CFSKate]

On a sort of related note, have you heard what's been happening to Justine Pelletier? She has a mitochondrial disease, but she went to a different hospital where they don't believe in that, so now she is locked up to be given psychological treatment.

[EthelDorothySusan]

It sounds to me as if Medics can't get away with things they used to be able to medical neglect then won't back down as social media exposes that. What a terrible experience for the girl her family, friends and those with invisible conditions.

[ProudAS]

Why shouldn't we give people who use disabled facilities the benefit of the doubt along with educating the non disabled who may genuinely be unaware of the impact of their actions. You are always going to get a few ignorant selfish twats but someone with a hidden disability may not wish give challenged and discuss it with a complete stranger.

[ProudAS]

Bloomin phone: give= to be

[AmberLeaf]

I couldn't disagree more with manicinsomniac.

So, while I can see how annoying it is to be somebody suffering from an invisible disability, I think a general 'benefit of the doubt' attitude to everyone would be a bad thing

It is way more than 'annoying'

Judgemental people only isolate already isolated people further.

The last thing they need is free rein to continue their behaviour because society at large becomes so tolerant that it assumes they must have an invisible disability, which is statistically pretty unlikely

Around 20% of the UK population has a disability, It is estimated that 70% of people with a disability in the UK have a hidden disability.

So really, it is not statistically unlikely that the seemingly able bodied person you see using an accessible facility is a 'faker'

People with disabilities shouldn't be 'tolerated', They are part of society, not a barking dog or a bad smell.

So basically, carry on making things harder for people with disabilities because of some selfish arses who abuse the facilities?

What progress.