crossposted to various chronic health communities

[baratron]

I had an altercation yesterday with an old woman who wanted my seat on the bus. It wasn't that I was unwilling to give up my seat to her so much as that I couldn't understand why she was asking a person with a walking stick to move when there were healthy-looking teenagers sitting in front of me. She was arguing that she hadn't asked them because they were older than me, which I couldn't understand because they clearly weren't, and so we were going round in circles arguing instead of dealing with the problem. What I *should* have done was stand up for her, then badger the healthy-looking teenagers into moving for me. But I was tired & in pain & my brain wasn't functioning well. So she went to sit further back in the bus, where I didn't want to sit because I didn't feel capable of dealing with the steps.

I'm sure she went away thinking how utterly unreasonable "that young girl" was, and I felt guilty for the rest of the day - still do, actually. I decided that I should make some cards to hand out to people explaining that Yes, I Do Have A Disability. I thought I could make them by hand, but then I realised that probably lots of people would find them useful. It could be done with a script where you go to a website and click the buttons saying what the issues you have are, and choose the picture you want to go at the top of the card. (I want help with finding free-to-use symbols for various disabilities.) You could decide whether you wanted to declare Specific Named Disabilities, or simply explain the symptoms you have. Also you could decide if you wanted it large print so people with bad eyesight could see it, or small print so the cards don't take up much room.

So I've asked a friend who's written an online card-generating program if he'd be interested in writing a version of it for me. And when I have spoons, I'll put together some designs for the cards. I'm thinking there would only be at most 5 different card designs. The headline would say "Yes, I do need a seat on the bus" / "Please may I use your toilet?" / "I have an invisible disability" / "I have a medical condition". The IBS and ulcerative colitis charities have cards about toilet use, but they look horrible. The medical condition card would be something you could give people if you were not able to communicate, telling them what to do (e.g. if you were having an asthma attack, anxiety attack, or autism spectrum overstimulation problem). These things *do* exist but they're really nasty-looking and hard to customise.

So. Would you be interested in a card like this, and if so, what would you want it to say?

Comments

[ailbhe]

I would have liked one when Linnea was under 3 months, but now I try to defend myself vocally whenever possible, because of inchoate ideas about raising consciousness or awareness or something.

[baratron.livejournal.com]

Oh, my plan is to explain vocally that "I'm not being unreasonable, I have a disability" and to hand out the card only if they demand more details. Though sometimes I don't even have enough spoons for that much arguing.

[barakta]

While I think someone who needs a seat has a right to ask someone else for their seat, the seated person has a right to decline without hassle.

You should not have had to, or been expected to deal with the teenagers, either she should have done it, or as she did, gone to the back.

I have never asked someone for their seat, but I sometimes get offered a seat, and must have looked so fucked just before my Dad's wedding as I got offered two in a row. Apparently when I'm moderately 'unwell' I don't look it unless ppl know me, but when I'm at the "oh shit I think I might blackout" stage then people DO notice!

I was contemplating if I'd need to ask someone in the 'disability' seats on a bus to give it to my mum when she was down after her knee flared up. As it was we were either going 1 stop, it was so crowded no one could get to seats, or there was a seat for her. I wondered what the response would be if I asked, and it would be a lot easier to ask for someone else who is not me.

As for wee cards, I had one from my hearing aid magazine ppl but it was crap, I could have done a better job with laminator pouches or business card machine. I find my Freedom Pass sometimes means people offer me a seat, and wonder if you could obtain an orange Oyster holder for that effect. I do have a deaf card in my wallet, it's yellowed with age and I've never used it. Hearing Concern do a nice range (for values of nice) deaf/hoh stuff in badge and card form if that's useful for anyone you know.

[nessbutterfly.livejournal.com]

WANT!

For my seriously weird arthritisy thing which in current weather (cold and rainy) leaves me in hideous pain, barely able to hold things, unable to walk long distances... but looking completely and utterly normal. I am so sick of women with prams or shopping trolleys using them as some sort of weapon in shopping centres to get people to move out of their way, yet I'm completely incapable of moving quickly - but there's nothing obvious to indicate it.

Of course, there's dealing with the young people don't have arthritis thing and no joint deformities so I look normal.

Not quite so essential for me as I don't deal with public transport on a regular basis. But it would be nice to not get dirty looks for not walking on travelators, for not jumping out of the way of the woman on mission with pram, to not have to deal with the elderly people in shopping centres who shove people out of their way with shopping trolleys... The worst days I just don't go out, or at least not without Linz. People tend to think twice about threatening someone who's 6'4" so I just hide behind him in crowds.

[jenny-gould.livejournal.com]

Yeah, its very hard when noone can see the issues. These days I feel well enough to move furthur to the back of the bus, but sometimes its hard to get my stuff with me and not fall over when the bus drives off. On the routes I travel frequently, the bus drivers know me (though whether they know I have any coordination issues I dunno). I do charm them, and being freindly sorts I have had a few point out when I have left my bag dangerously open and so forth... I suspect that 99% of people I have known for years have no idea what ita actually like to be stuck fighting the universe for access to enough space to move, time to get to toilets, and breathe.

I had another example of what you mean in the High Street the other day, when someone nearly knocked me over by walking into me. Being in a pissy mood I loudly shouted at them for not giving me any space. As I tried to get by, I knocked into someone else. Who was extremely rude to me as I was clearly *also* not looking where I was going. Nope, it just so happens that at that particular time, my body was not going to go the correct way. I saw that coming, did not see why the first person had to get *me* to step out of their way.. and was unable to avoid the second person in the attempted recovery from being nearly knocked flying. Was that sort of event explicable as a disability to the casual observer? Nope of course not.

Of course, in my area I would have asked the teenagers loudly to move for her *as you can't seeing as how you are also disabled*. I find that if you do it loudly enough, social pressure can work. I appreciate that may not work in London though, as there are too many random strangers interacting all the time.8
g

[thekumquat.livejournal.com]

I actually have a card that I got from my GP surgery that has an ear symbol and says "I am deaf/hard of hearing" and below 'To enable us to communicate more easily' with five bullet points.

It's opposite my Gold Card in my wallet, and has reduced my problems with arsy ticket sellers from a few a year to zero. Given that I speak fine people's brains don't catch on when I say I'm deaf.

I have been known to call out in a loud voice on a bus "Is everyone sitting in the priority seats disabled?" when there's someone standing who clearly needs a seat - IME most people will leap up rather than be thought 'disabled'...

[griffen.livejournal.com]

I'm interested, but I don't know what to say in terms of design. (My brain is borked today.) I didn't want you to think I didn't see this, though, because I think it's a wonderful idea. :)

[shanynrose.livejournal.com]

I will almost always give my seat to an elderly person, although if I am with my daughter (either one) she will get up first. If I MUST take the bus on a physically difficult day, I might take my cane even if I don't need it for balance. I know that's cheap, but then the bus drivers will have someone (usually a kid) vacate a seat. The disabilities are invisible, but sometimes the cane is a necessary visual aid. Like when my daughter was suffering from horrible stress fractures in her tibias (tibiae?) and had to use a wheelchair at school. On the advice of a peds nurse friend we wrapped her shins so fewer kids at school accused her of faking. Kids can be MEAN but so can adults who Do Not Get It.

Fortunately or unfortunately, I have another six months where I can use the door-to-door disabled access service because I broke my ankle back in January. It was my right ankle so no driving; the trauma wrought havoc with my fibromyalgia and I couldn't make it the four blocks to the bus stop. Getting down the stairs was hard enough. Also when I had to go to the doctor, my health insurance paid for a van to pick me up. The plan is actually designed for the elderly, but I was thankful my husband was able to take off LESS work to get me places.

And my husband actually enjoys riding the bus to work (he enjoys the bus, period!) so I usually have the car.

[johnckirk.livejournal.com]

Following up on this, I see that Southern trains have now implemented something very similar to your suggestion:
http://www.southernrailway.com/main.php?page_id=669

They don't have any pictures on the website, but I saw a poster at a station today, which includes a photo of the cardholder (i.e. people know that you haven't just borrowed someone else's card). I think it looks like a good idea, and potentially it could be implemented on a wider basis (e.g. by TfL).