To think that being in a wheelchair or being old ARENT the only resons to need to to sit in disabled seats

[hiddenaway34]

DS 13 was travelling back home on the bus, hed just been out with mates in the city, he was feeling fine in the morining but after just two hours stated to feel really unwell he has Ehlers-Danloss and PoTS and due to sudden weather changes and his friends not letting him have enough breaks he had to come home early. It was busy he sat down in one of the disabled seats, he has really bad joints and i have always told him on busses sit down, as the jolts can make him dislocates (It has befor when he was 9). And he can also collapse when moved suddenly. An older woman came on to the bus and sat in the seat across from him now all the seats were full to which the woman said "You now you have to give that seat up when someone who needs it come on." To which he explains why he needs the seat the woman replies "No you dont, your just being lazy." More people get on the bus and stare at him and talk about him. Only Older People were sitting down in the diabled seats (and him) and they expected him to get up just because "hes young and looked fine." AIBU to think that its not just Older people and wheel chair users that have diabilitys (I dont hink it is but thats what someone on the bus told him!) I just wanted to rant sorry. I was distraught for him he left bus crying and has lost the confidence to go out and it took ages to build it up, because he was always so worried about his conditions. I did try to explain is that this is how people view it sometimes but it didnt make him feel any better.

My daughter has Ehlers Danlos syndrome, and often feels dizzy and overwhelmed in shops, could be sensory overload...I've regularly had to find her place to sit, and put up with major league tutting from other adults because of tnis. Now I loudly ask her if her hip is dislocated again. They soon fuck off.

I don't have eds but I do have rheumatoid arthritis & hypermobility & I use disabled seats if I can't walk further up the bus (walking down the bus to get off when bus is moving is near impossible for me). I have a disabled persons bus pass and constantly get asked by people what's wrong with me (as if they're entitled to know) or told to give up my seat for elderly people (I have the misfortune of looking much younger than my age). I don't tell people why I need the seat as I don't owe anyone an explanation but I just point out only 8% of disabled people use a wheelchair and leave it at that. i hate how entitled ableds are with regard to disability - they believe all disabled must be scroungers that their taxes pay for therefore they have the right to speak to us however they want. Turns me into a publicly very rude person!

YANBU at all. This makes me so mad

I'd second the suggestion of a folding walking stick. I've started using one as I end up in agony and sitting on the floor if I have to stand, it's also useful on bad days. I've not had any confrontation but am assertive enough to stick up for myself. I do think young people get more shit from adults than they should, but this was the same when I was a teen. It's a shame as being a younger disabled person is a really awful thing, it's far worse to suffer all those years than only suffer when very old. It really limits your life and people should have a little compassion. I wonder if some of this behaviour is like a phobia - a 13 yr old in pain and disabled is so horrible we'd rather deny it is possible.

Pasta I think some of it is. I often play down how poorly / ill / how much I'm hurting. That much so I recently landed myself a week in hospital via resus because I was convincing myself I was ok when I clearly wasn't!

I'm 29 and I'm in the SG of ESA but I lost my PIP application because the assessor lied through her teeth summised I didn't 'look' disabled.

I too have resisted a walking stick for so long but I think I am going to have to give in to a folded one. I was once in agony at the Bus stop after a day out and everyone just pushed in front of me.

I think mine stems from watching my Mum be relentlessly picked on when I was little - she has really bad arthritis and we lived in a delightful area where the kids and adults favourite taunt was peg leg.

Nottingham City Transport offer journey assistance cards which people with hidden disabilities can show to drivers/other passengers in the event of problems like this. They can be downloaded or you can contact them for printed card ones to be sent out to you. They'd probably do them for people who don't live in Nottingham too.

www.nctx.co.uk/using-the-bus/easy-access-for-everyone/journey-assistance-cards/

I have been utterly shocked this week at how people treat even the visibly disabled. I have been using a wheelchair due to a broken ankle, and I'm horrified that people have to put up with this treatment every day of their lives. I dread to think how awful it must be to then be told that because your disability is invisible, it somehow doesn't exist.
It never occurred to me that people would be anything other than helpful.
I don't know what I can do to help people. I like to think I've always been thoughful. I would like to think I'm going to be a better fellow passenger from now on.

snow have you taken your pip to a tribunal? I did after my assessor lied through her back teeth
I won too

Give your DS a big hug, it's horrible trying to cope with a disability when you're young and look healthy. I have EDS too, the mobility issues are worsening and I'm 22 so I get plenty of the glares and judgmental looks.

Have you had a look at Stickman Communications? She does lots of things regarding EDS and POTS including wallet cards to show to people to explain why you need the seat if you don't feel up to telling them out loud and lots of great tips and tricks sheets too.

I've had a similar(ish) experience... I was sitting in a priority seat on the tube, I'd just given blood and was feeling extremely dizzy and trying not to faint... pregnant woman gets on the tube and gives me both barrels for not giving her my seat.

YANBU

I have epilepsy (tonic clonic seizures) and when I used buses I would sit in the disabled seat so that a) if I had a seizure I would either fall into or could be lain down in a spacious area to prevent injury and b) so that if paramedics or any kind of first aid was needed I was easily accessible.

I remember once I was sitting in the disabled seats and two elderly women were sat behind me and saying very nasty things about me, clearly thinking I was just sitting there for comfort, and they knew I could hear them. In hindsight I wish I'd said something to them but at the time I just wanted to cry

Snow your attitude sound exactly like my DS! He plays it down SOOO much he likes to act as normal as possible especially when your that age. To the point once he played it down and ended up dislocating! Im thinking of A) getting him a nice medi id and B) getting hi a card he can use. I know if he said he needed to sit down he NEEDED to sit down

kali110 yes I did and I lost there too. One of the reasons given amongst a lot of other nonsense, and I shit you not, re my neurological condition and my cognitive abilities, 'snowgirl went to uni which suggests she is clever so we don't think her cognitive ability is that impaired anyway' . I went to Uni 10 years ago, fell ill in 2014. Unfortunately the stress of the tribunal made me really poorly and my mental health took a tumble so I didn't meet the deadline for challenging that delightful gem! Also had a neurologist appointment not long after, letter from the neurologist confirms the problems I have which they denied / refused to accept.

hiddenaway34 I know, sorry I don't know if it's fear of being judged, or just our resolve to 'get on with it' . It's my own stubbornness I think, some nights I have literally had to crawl up the stairs to bed in agony, or just slept downstairs, yet I refuse to use a walking stick! The morphine the hospital gave me sorted my knee right out for a good fortnight though, didn't sort my chest out but did my knee temporarily! .

Bless your DS the dislocations sound so painful, when your DS is old enough to drive, make him learn so he can keep his independence if he can. I haven't learnt to drive yet and I really wish I had.
My Mum walks with a triwalker thing and she's still had people on buses tell her to move from the priority seat! she normally sits on the single one at the front so she can fold her walker up and 'park' it at the side of her. I was forever telling her to learn to drive to.

On amazon you can get medic alert dog tags. I have them for dd. She still gets painful knees occasionally from the HSP which causes arthritis. The dog tags have her condition, name, blood group ( as it's rare ) and hospital on them. When she's in pain and a bit grumbling sticking them round her neck stops the tutting and glaring that a 6 year old needs carried etc. Very cheap too.

I get glared at for using disabled toilets, but one problem with my asd is sound sensitivity. The postman putting post through the letterbox will make me jump in shock. I get very panicky using the ladies loos because of the noise.

Snow dont worry i believe alot of people with chronic illness/disability are like that!

snow i'm so sorry!! Unfortunately though not shocked. At my tribunal they said 'you don't act like someone with depression'
So everyone is the same??
( though i don't think this was even an unusual thing sadly )
So you went to uni 10 years ago? So what!
Things change!
15 years ago i was painfree.

I was just glad i showed that my pip assessor was a complete liar.( aka complete bullshitter, also not a uncommon occurrence).

Do you have a disabled bus pass for him? I know people with eds and fibro who flash their passes at people who comment and ask if they have a better ticket to use the seat....

Can you buy fold up sticks? I have a hard time getting any help from my doctor so if I can just buy my own that would be better. Sick of fighting to be heard. I've resisted a stick but I think a fold up one would be good. Especially in crowded places when it's hard to walk around people etc.

for you and your son hidden Bloody awful he has to deal with such ignorance on top of everything else.

Have googled fold up walking sticks (like I should have before asking sorry ) and yes you can buy them online.

Local chemists usually have a few walking sticks including folding ones, if you just want plain black (under £15). Online if you want snazzy ones.

Mine's mostly for balance and just getting a bit of space in the rush hour (seat? You're doing well to get on my local trains so even if people noticed to offer seats I'd never manage to get to the seat. Usually the next stop clears the train out though, so it's not too bad.)

The thing is re PIP, they do all this to save money, yet they don't realise the knock on effect it has. The house I am in is no longer suited to my needs, and when I recently had a meeting to see if I could get moved nearer to my family for help, I got told basically that PIP is proof that you have mobility problems now to enable you a move!

Re the folding walking sticks, chemists yes but I've also seen them in cobblers shops too. It's my birthday soon I might treat myself to a snazzy one

snowgirl29 PIP is utterly utterly disgusting. It has made me ill.

mrgrouper it's awful isn't it. I don't think it helped me in the slightest either. PIP would be beneficial but I get ESA so I'm not in a dire position and can manage with what I get. I just feel sorry for those who are worse than me and literally can't function without the extra £.

Yanbu because people like them want people like your son me every disabled person to justify themselves for the approval of some frigging random on a bus /train/toilet/lift.. 45 I am and been dealing with this shit all my life your son deserves better time has supposed to have moved on