On standing up, but not for myself

On Wednesday, I stepped onto a train during rush hour and watched the last few seats fill up.

I thought about needing a seat, needing to preserve some energy to get through the day. I thought about how my knees had started paining on Monday night as I’d settled down to sleep, and how very hard Tuesday had been on them. I thought about being perfectly within my rights to ask someone for a seat.

And then I thought about how I looked, healthy and really young and dressed in a cheerful t-shirt. And how there were other similar-looking people standing around, so how impertinent I would appear if I asked someone to stand up for me. And how I’d never worked up the courage to ask anyone for a seat before.

In the past I’ve rehearsed what to say in my head, ‘Excuse me, I’ve got leg problems/crook knees [or whatever inaccuracy I’ve decided is most likely to work, because ‘I’m fatigued’ or ‘I’m chronically ill’ would cause delays and doubting looks and questioning]. Would someone mind giving me a seat?’ But then the words have never left my mouth. Because… what if they refuse? What if they resent me? But worse than that, of course, is the thought that I might be asking someone who really needs that seat who I’ve misidentified as someone who doesn’t, just as I’m expecting people to misidentify me. And I can’t get the words out.

I stood on the train, trying not to fall over, shifting my weight so my knees both got a turn at breaks, waiting for someone nearby to get off the train, get off the train, why is no one getting off the train, please get off the train. I wished I’d brought some music to distract me. I wished I could overcome the social conditioning and the fear and the shame and just ask someone. I wished I could stop being so silly. And, as ever, remained as I was.

Eventually, a lot of people wanted to leave the carriage, and the only way to clear the way for them was for me to get into a seat someone had just vacated. I sat down at last and settled my legs at a carefully chosen angle. I felt guilty for the couple of minutes before I had to get up for my stop because there was a young man just near me who didn’t have a seat. I hoped I wouldn’t go through the same thing on the bus, and wondered what I was going to do the next time this happened.

Cross-posted at Zero at the Bone.

39 thoughts on “On standing up, but not for myself

  1. Oh, how I hear you. Before my back pain got to the point it is at now, where I noticeably limp, or stumble, or slowly labor along, I looked healthy and perfectly capable of standing/walking for hours without discomfort. But I couldn’t. It hurt too much.

    I never asked anyone for a seat, either. I just couldn’t do it. What if they were even worse off than me? What if it was rude? What if they thought I was, gasp, impolite? Gah. I just couldn’t do it back then, not until it got to where I was bent over at a 55-degree angle and physically unable to straighten my back because of a herniated disc (the size of a grapefruit apparently) and sciatica shooting down both legs. I had nothing to lose then. I let them push me around in a wheelchair. I asked for seats because I couldn’t stand. I did what I had to in order to be as comfortable as was possible.

    I’m hurting near that level again, though not quite bent to 55 degrees and no grapefruits in my back yet. Half the time I let people think I’m perfectly fine; the other half of the time, I don’t have the energy and flat-out let it be known I’m hurting and I want to sit down, dammit.

    I’m sending you good vibes, and I hope you can do whatever is most comfortable for you! *hugs if you want ’em*

  2. EDIT: Ack, I meant that people think I’m perfectly fine while standing still right now. If I move, no one has any problem noticing what a labor just walking is for me.

  3. I’ve had enough experiences being snarked at, lectured, cure-talked, or ignored when asking for accommodations that I know damn well it’s not “never a problem”.

  4. I have a bad knee but I never ask, because I’m fat and the thought of people assuming I’m just too lazy to stand is too shaming to overcome; I always feel like on some level the discomfort of standing is my ‘due’ for being overweight.

  5. Sometimes, when I was very ill with cancer and my vertigo was at its worst, I had to ask. Mostly people were fine; sometimes it was “fat bitch” or “lose some weight”. I felt terrible asking people in the disabled-reserved seats, just in case they were actually disabled, but no-one ever said that. Once the train/tram started moving and it was obvious I was not able to cope, someone always gave me a seat, possibly out of well-founded terror that I was going to fall on them! But that shouldn’t be necessary.

    For all I try to live green, I’m kind of guiltily glad I live somewhere with no public transport whatsoever, as it gives me the excuse to go everywhere by car and not have this interaction. I’m aware this is a privilege, and one I’m over-using, hence the “guiltily”.

  6. My freind has told me that her health improved when she got a walking stick, because “got” that she was disabled.

    Stupid, but if a stick helps, I don’t see any problem in getting one.

  7. On Friday I had a somewhat similar experience. I made the mistake of running to catch a bus. This winter’s been really hard on my asthma, and I know that right now any kind of running is a Very Bad Idea. By the time I got on the bus I could feel my lungs closing up and knew that even with my rescue inhaler it would be a few minutes before I could breathe properly again, but I wasn’t audibly wheezing and I look young and reasonably healthy.

    Of course, there were no free seats on the bus. And as much as I knew I should, and knew that I needed to, I just couldn’t bring myself to ask for someone to give up a seat. Despite being quite vocally out about other aspects of my life, I always seem to balk at “outing” myself as disabled in any way. And I take pains to hide or minimize the asthma especially. People are afraid I’ve asthma, and I never can tell who, stranger or friend, is going to panic and make a big deal out of something I’ve lived with for over half my life and am more than capable of handling on my own. So, I waited, and breathed as best I could, and waited for a seat to become free, because I just couldn’t bring myself to ask.

  8. I’ve been there too. I was brought up to think I wasn’t disabled, and therefore wasn’t entitled to use/ask for the accommodations available to ‘those people’. (Said in a pitying tone, like ‘those poor souls’.) It took me a long time to realise I WAS one of ‘those people’. I spent years NOT sitting in the disabled/elderly seats on busses. I got up an hour early so that I could catch the earlier, quiter bus to Uni, so that I would be able to get a seat. I would never have dreamed of asking for a seat, because it was so deeply ingrained that I wasn’t one of ‘those people’, even though my feet hurt and my legs hurt and I fell over any time the bus sped up or slowed down or went round a corner.

    And even though I’ve come to identify as a disabled person, that guilt is still there any time I take/ask for a seat. I feel like people are looking at me and thinking ‘she’s not disabled’.

  9. Thank you for the supportiveness and sharing of stories everyone. What would be great would be if people could not tell me how I ought to respond.

  10. It’s difficult. But I believe we have to stand up for ourselves. We’re not just making ourselves visible – in the process, we are making it easier for every invisibly disabled person who asks for a seat *next* time. We really can work as a community, disabled people, and stand up for each other without ever having met each other. Every act by a disabled person is a political act, an activist act, I believe. Simply asking for a seat is a contribution towards changing the world for all the other disabled people, invisible or otherwise, in the world.

    (Yes, I’m a hopeless idealist. But that makes me a bit happier.)

  11. I feel much the same way about asking for a seat. I find it’s easier if I’m carrying my walking stick that day, because non-disabled people tend to react better if there’s a visual marker of disability. I’d like to see the general public better educated about invisible disabilities so that the visual markers were no longer necessary.

  12. We will now not be letting any more ‘you should…’ comments on this thread. I just wrote a whole post problematising that very idea. Could we please have a little respect for people’s experiences?

  13. I’m very sorry if it came across as though I was saying”you should”. I absolutely didn’t mean that, though. I was sharing my own experiences. I have the greatest respect for the author of this post and the struggles she faces. I have been invisibly impaired myself. I did reach a different conclusion, but I am in no way saying that’s what people HAVE to do. I’m saying what helped me and made me feel powerful and connected. But apologies if I mis-worded. I am dyspraxic and often communicate things badly/unclearly.

  14. This was a tough one for me, especially when we moved to Seoul and I had to also navigate the language barrier as well. “Just Asking” wasn’t always going to be an option because I hadn’t mastered the language, and my disability is invisible. Rush hour subway cars are packed, and people often don’t think twice about sitting in the reserved seating.

    Even now when I have my cane I feel guilty when some of the older men offer their seats to me. I don’t feel deserving of the seating. If I don’t have my cane, I feel way to timid to attempt to ask for a seat even if I am in remarkable pain. I don’t have an answer, Chally. I wish I did.

    “It’s never a problem” has never been my experience. Even with my cane I get the questioning looks and the people who hover near me (even in the reserved seating) as if I should give up my seat to gain personal space. Even with a visible marker I must be faking.

  15. Thank you so much for this post.

    On the weekend the best way to get me to a family event was for me to be flown. Very fatigued, in a lot of pain, and scared about being in strange, possibly hostile places in such a state. I needed my stick, and as Anji has said above, it provided a handy visual marker of disability, so all the staff and other passengers had an obvious reason that pink-cheeked-healthy-looking-plump-hippy-girl was wincing in pain. But here’s the thing about my OWN behaviour I found so upsetting, every time someone asked if I needed help I would answer “Oh, no, thank you, I’m fine” *facepalm* I really wasn’t fine, but couldn’t seem to stop myself.

  16. @Ouyang Dan – I wasn’t disabled when I lived in Japan, but I very much felt the need to fit in and not be the loud, bad foreigner, let alone the language issues. I fainted on a train once, and when I woke up on the floor, I was embarrassed at breaking the train etiquette and relieved that no-one had come to help me. (Though Japanese people certainly helped me on other occasions, just not in the private-space bubble of public transport).

  17. “Oh, no, thank you, I’m fine” *facepalm* I really wasn’t fine, but couldn’t seem to stop myself.

    Argh, I do this all the time. Irritating must-be-polite-and-self-sufficient conditioning!

  18. I am offered seats all the time, but that’s cause I have a visible disability. It has nothing to do with my mobility though (I’m blind), and I used to snap at people that I had nothing wrong with my legs. This is rather ableist I realize. Now I tend to accept seats, since I may not have anything “wrong” with my legs, but I do have veyr poor coordination and often fall when standing on the bus/train. This makes me feel guilty somewhat, since I know there are people who need a seat more badly than I do.

  19. Asking for accommodation is hands-down one of the hardest things to do. I always struggle between my ‘good southern woman’ training that says to be quiet and not make a fuss and my desire to get the help I need. Usually the ‘good southern woman’ wins out.

    I will say, however, when I lived in the south, my being female usually meant I was offered a seat on buses. My disabilities are not physical, so I didn’t need a seat, but men, usually older men, always would offer their seat to women who were standing. That was the only place where I’ve had that experience.

    Joan

  20. I see a lot of us have this experience!

    I use a wheelchair sometimes, but I’ve been walking more lately, and I find that I have to shift my expectations and ways of behaving. I’m nervous taking the seats for people with disabilities near the front of the bus, and the other day my boyfriend (who has chronic health problems, had just been having hospital tests and wasn’t in much better shape than me) and I took those seats on our way home. We had the impression some women (senior citizens, one of whom seemed to have a little trouble on her feet) were annoyed with us for being there, but we really needed those seats that day. Happily there were some other seats right across from us, so there was no disadvantage to them, but I felt guilty even though I really needed to sit down.

    I’ve never asked someone to give up their seat for me, though sometimes people have, seeing me looking uncomfortable, and I’ve been really grateful. It’s often older men; I’m female, and I guess they’ve been socialised that way.

    One thing that I find particularly an issue is that even if it’s not a terribly bad day, I’m happier taking a seat near the front of the bus (there are two kinds – the ones that flip up to accommodate someone using a wheelchair, and the first pair of regular seats) because I don’t have good balance and I tend to stumble (there have been some really nasty near accidents actually) when I’m moving along the gangway while the bus moves – which you have to, really, to be ready to get off when it gets to your stop. Even using the handrails doesn’t counter that as much as I’d like. So the less distance I have to walk along the bus, the better…

    I really wish people understood more about hidden or variable disabilities; it would take a lot of the social anxiety out of life in these basic, everyday situations like using public transport…

  21. I have epilepsy and it’s taken me a long time to be able to ask for a seat on public transportation. I usually ask people if they’re disabled, and if not if they can give up their seat. (usually people who are sitting in the disability seating) I usually have people say things like “you’re disabled?” and roll their eyes or ask me to prove it to them. One man the other week accused me of lying, saying i probably just read about seizures on the internet! I’ve also had people tell me what I “should” be doing, like wearing a sign, telling the driver, etc…I try to shrug it off, I do get upset…and people look at me like I’m a horrible person who’s lying to get a seat…especially because I’m young and trans and I think people doubt my credibility for that. Anyway…i know it takes courage…and it’s not really any easier after you start to ask (in my experience) but i know where you’re coming from. good luck.

  22. Awhile ago, we discussed something like showing a colored card to the bus driver is one needed the bus to kneel for them. How great that would be not to have to ask (which is sometimes impossible).

    Wouldn’t it be wonderful if when we got on the bus and paid a fare, we could flash a colored card, which meant we would need disabled seating, and then the driver would say “we need an “x” seat!” and someone who was just sitting there without thinking about it would move.

    A card system, which put the communication into a wordless, universal form (similar to a parking placard), would REALLY help on buses IMO.

  23. Where I live, there are rules that children paying child fare have to give up their seats for adults (not very small children obviously, but school-age children). I wonder if this could be taken advantage of? But then it isn’t always enforced very well by the bus drivers (the train conductors are much better). Don’t know if this helps anyone, it was just a thought I had.

    What is rudest is when there is a seat left, but someone has decided that their bag is more deserving of a seat than a person.

    Disclaimer: I am currently non-disabled. I’d certainly get up if I was asked for my seat (unless I was going to have trouble standing – sometimes I can get really faint), and I try to be aware that there are invisible disabilities.

  24. I hope you can find a way to deal with this. Maybe you’ll find mine helpful.

    I’ve found many people to be very nice and accommodating. The rest are generally uncomfortable with disability, and a little bit of detail can go a long way. They’ll get up just so they don’t have to sit there listening to you explain that you have a disability. I think it helps to have the words ready from the get go, sort of like a script I’ve memorized. That way I don’t feel embarrassed about revealing personal information. (If I talk about what’s going on when things are bad, sometimes I get very emotional and cry, and the fear of that happening might make me prefer to stand than get the seat I deserve.)

    No matter what is ailing me on that particular day, I usually say, “Excuse me, but I have a neurological condition that is acting up right now.” (Someone will usually get up, even if it’s not the individual I’ve targeted, but if no one does I go on.) “It makes it very difficult for me to keep my balance in a moving vehicle.” (By then I almost always have a seat, but in case I don’t …) “Since this seating is designated for people with disabilities, would you mind letting me sit down?”

    Notice that the actual question (which I hardly ever have to ask) is quite wordy. The more words there are between the beginning and the question mark,- the more distance there is between you and the person you are addressing, and the more formal and polite the question is perceived to be. By that time in the script, the person knows darn well what I’m going to ask, and the length of the question draws out the embarrassment they feel at having to be asked to give up a seat to someone who clearly needs it more than they do, so they almost always get up before the question is finished.

    The long question is a really neat technique for giving yourself an emotional buffer when asking something of a stranger. (I learned about it in linguistics class, and I’ve used it to tailor my requests to suit many different purposes.)

    If you decide to write yourself a script, maybe it would help to try it out with a friend who could help you polish it until it become something you don’t get anxious or upset about. Whatever strategy you use, I hope you can get the seat you deserve.

  25. Thanks WER, and I’m sorry about your experiences. I have a problem with asking people if they’re disabled, as I don’t think anyone oews anyone else that information and it can also be a safety issue.

    ‘Where I live, there are rules that children paying child fare have to give up their seats for adults (not very small children obviously, but school-age children).’

    We have the same here, Katherine. I don’t like how it assumes school-age folk aren’t disabled; I felt I had to stand up for older people when I was at school – in fact, I risked losing my concession fare if I didn’t. I also dislike that school-age people are made to be second class citizens in a way: ‘oh, you’re paying less, you don’t deserve that seat as much as we adults do (even if you’re paying less for a perfectly good reason). Also, you as a child have less social status than me as an adult and are less worthy of respect!’

  26. @chally

    The rules in my area also dictate that if you are unable to safely reach the hand-holds you should be provided with seating and while there are holds provided on the corner of seats that rule is supposed to apply to the overhead ones as the seat holds are there predominately as guides for moving while the bus or train is in motion rather than for when standing still. Thus those most likely to be affected would be teenagers/young adults. Which isn’t to say that it isn’t grounded at least in part in ageism, just that they aren’t children.

    Of course while don’t know that the rules in your area are the same as mine, but I would be surprised if they weren’t. The assumption that an 8 year old will stand up for a 40 year old seems an odd one since children are less likely to be able to keep their balance, and the idea of students standing for adults is that as one gets older the likelihood of things like bad joints/backs/poor balance increases and thus non-disabled students will suffer less for having to stand up than non-disabled older (than them) people. Which I think has a certain degree of merit to it, until one considers how many things don’t ‘qualify’ as disability. :/

  27. @ Chully, Thanks for that comment, I hadn’t thought of that before and I’ll find a new way to ask for a seat now.

    @ Ms. M – I live in a city (philadelphia) that has color coded cards for passengers with disabilities, that way you can flash it before you get on the bus, and the driver can ask people to give up seats (though I’ve never seen them do that) and extend a ramp. The only problem is they’re color coded according to gender, and have a big F or M stamped on them. I’m transgendered, and i applied for a card that had neither M or F on it (which doesn’t exist to my knowledge), and my application has been “being processed” for over a year now (standard wait time is 3 months).

  28. The only problem I can see with the card-type system is, like the blue badge/handicapped sticker, it’s another system TABs can use to police disabled people.

    For example, I have a mobility impairment, but I’ve recently been turned down for a blue badge because I’m not disabled ENOUGH. To quote from my refusal letter, “blue badges are only for those who are unable or virtually unable to walk”. It’s a common misconception among TABs that blue badges are easy to get, so anyone who doesn’t have one can’t really be disabled. I can imagine a similar thing happening with give-up-your-seat cards – TABs decide who qualifies based on some bureaucratic, inflexible criteria, TABs police the system in a way that suits them, and yet again disabled people are asked to prove that their degree of disability merits a grudging accomodation.
    /rant

    Sorry, I’m kinda sore about this right now.

  29. @WER – Why on earth would these passes need to have gender designations on them? I mean, what practical purpose does that serve? That is just mind-bogglingly unnecessary.

  30. @hsofia – i know..the thought behind it was that it’s supposed to stop identity theft and misuse of cards, i.e. letting a friend use one, although not sure how that works… The gender designations aren’t just for the disabled riders/senior folks, but there are also much smaller color coded m or f stickers on all the transit passes. Actually what it does do is serves to make transit workers gender police and create unsafe situations for trans people when transit workers throw us off the bus, don’t allow us on, or argue with what they think our gender is and make a scene out of it. Right now folks in philly are fighting just to set up a complaint line to report these harassment problems. Boggles.The.Mind. We’re having a drag show at city hall in a couple weeks to raise awareness.

    @Dogged- I understand why you would be sore…I know what you mean…where i used to live in MA, one had to be “70% disabled” in order to get a transit pass with a reduced fare for disabled riders. Really? How in the world is a “70%” disability even quantified?

  31. @WER – Wow … so separating the entire bus riding population into two genders is supposed to prevent identity theft? WTF. That is the most bogus thing I’ve heard in weeks. It’s like some transphobic person rubbed their hands together with glee as they suggested that idea. Anyway, I found and read some articles about it online. It’s interesting that at least one of them was written by Daniel Denvir, who I guess lives in Philly now but used to live in Portland, where I met him (he was working with PCASC, a Central American solidarity group). It’s a small world. It makes me angry me that transfolk are having to spend their resources and energy on overturning this; this should seriously be a one-wand-wave problem. As in, there is no need for discussion, eliminate this policy NOW, as it causes harm while producing zero benefit.

  32. Thanks for this article; I was linked from Almost Normal.

    I have chronic migraine; the meds I take make me have no stamina. I wind up constantly saying “I’m sorry, I can’t walk to that meeting room a block away, I need a videoconference.” It’s embarrassing. I just had to trade off being with the rest of my group against moving to a building two long blocks away from all my other meetings. I decided on having companionship, which means that now every time I have a meeting, I’m going to have to call my company’s on-call transportation.

    Look how ‘lucky’ I am. My company has oodles of videoconferences. My company has on-call transportation. My company tries, sometimes, to be accessible. I know how many people have it worse.

    But standing up, every day, and saying “I’m sorry, I can’t do that, I have a disability” is … hard. Very hard. I have started asking people who sit two-people-and-a-backpack across on disabled benches, “Excuse me, but can I sit down?” Like you, I can’t make the next step to “Excuse me, I’m disabled” if I see that bench actually full.

  33. A little late to the party, but I had to comment. I have much the same problem – I’m in my 20s, and I have Fibromyalgia and Rheumatoid Arthritis. Even when I’m not exhausted and incredibly achy from my conditions, my meds leave me light-headed and totally suck away the tiny bits of energy I have left at the end of the day.

    But because I’m the age I am, and look fairly young, the general able-bodied expectation is that my health is fine, and I don’t need the easy-access seating at the front, or to be the one to sit down when a free seat opens and someone a decade or so older than me also needs a seat. I’ve received ugly looks and glares for ‘daring’ to sit in the designated seating, even when I’ve really needed it, and it’s gotten to the point where I do my best to avoid taking one of those seats whenever possible – if there’s an empty seat further back, I’ll take that over one at the front, even if the walk on the moving bus is difficult for me and getting up from the squashed-together seats can be a struggle.

    There’s also the problem that if a parent with a stroller gets onto a bus, one side of the designated seating is expected to move to accommodate the stroller… I’m sure some of the people who move for the strollers *need* those seats (because I’ve done the same myself – everyone else moving leaves you little other choice) but to protest or refuse labels you as ‘selfish’ or ‘rude’ or ‘inconsiderate’. Even if the 20-something fit-looking parent taking up five seats for themselves and a small stroller (the block of three folding seats, plus the adjacent pair of seats that makes the first row of forward-facing seats) doesn’t need all that space and others could sorely use it.

    I don’t know what the solution is. The cards some commenters have mentioned seem like a good idea in principle, but they don’t seem to be enforced in practice. I will definitely be considering some of the suggestions for ‘speaking up’ in future, though, even though I’m quite shy… I’ve felt close to passing out twice on the bus so far this week, and it’s only Monday!

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