“What can I do?”

Access is an all-consuming endeavor in a disabled person’s life. I love that the disability community learned to frame it that way: it emphasizes that the problem is not the person, their body or their condition; the problem is society’s indifference.

Many accessibility solutions are structural; they require collective action — constructing spaces such that wheelchairs can be used within them; hiring interpreters and providing caption services… these are not actions that can be undertaken by a single person.

What is unfortunate about this, though, is that it relieves the fully-abled individual of hir responsibility to hir disabled counterparts. It means the fully-abled individual can safely get away with never thinking about disability, and the connection between societal access and hir actions specifically, at all. Sie never has to consider how her attitudes and behaviors very really shape the environment of hir peers. Sie never has to stop and think, how does what I am doing affect those around me, and how can I change that to make things better for them?

When all solutions are collective, your own actions become invisible. Your contribution to the world around you becomes invisible. The power you hold over other people becomes invisible. Your status as part of the problem becomes invisible.

So let’s be clear — YOU ARE PART OF THE PROBLEM. And there is no instant solution, no magic words that can make that “go away.”

But what can you do?

I thought of what I think is an illustrative example the other day.

When I was attending college, I had a lot of walking to do — at least a mile from my dorm to each class, and of course the walking in between. It was exhausting, and it was one of the major factors that led me to drop out the first time.

One of my classes was on the sixth floor of the humanities building. Another was on the fifth floor of the math and science building. And I had several choices on how to reach those points:

1. The elevator.

2. The escalator (in the math building).

3. The stairs.

Here’s the irony: the only accessible solution was the stairs.

I have a physical disability. That disability is also invisible. I can climb stairs, but when I do it precludes any remotely physical activity (up to and including sitting upright) for a couple days, compounded the more flights I have to climb.

This was not teneble, not when I had to do this three times a week, and that doesn’t even include the energy required to walk to the building in the first place, to sit in the hard uncomfortable chair for an hour taking notes, and the energy I needed to do the home assignments, projects, and studying necessary for the class. And that doesn’t account for my four other classes!

So: Why couldn’t I use the elevator?

Well, because everyone else was using the elevator — so many people that there was a long line and usually a 15-20 minute wait before you could step foot in one.

Again, I have an invisible disability. I could have pushed to the front of the crowd every day, jostling my way through dozens of people to weasel my way in the door. And that would have made me kind of an asshole, you know?

So what do I say? “EXCUSE ME, I’M DISABLED, I NEED TO GET IN.” And everybody would turn to look at my lanky eighteen year old body, with no visible deformities, no mobility aids or other assistive devices or personal aide or caretakers, having walked in the front door just fine. And then everybody would be thinking that I was kind of really an asshole.

Complicating things is that at the time, my severe anxiety was undiagnosed and untreated. There was no way I could have even squeaked out a humble “excuse me,” much less forced my way through the crowd, much less shouted for all to hear that they needed to get out of my way and give me “special treatment.” Oooh, how I loathed special treatment. It made me feel like I was, you know. Disabled. Not normal.

Anyway.

This crowd existed in front of every elevator in every building on campus. Not all of the people waiting at that elevator were healthy enough to take the stairs. There were surely others with invisible illnesses like me, and others yet who just weren’t in the greatest shape, and so on. But the majority of those folks took the elevator because it was there. And those folks are the ones who made my life, and my participation in society, that much harder back then.

So: Why couldn’t I use the escalator?

Here’s a different problem. A lot of kids used the escalator. An escalator, as you know, is basically a revolving set of stairs that moves upward, so that you don’t have to do any climbing to get up to the next floor.

But here’s the problem. Everyone who took the escalator? Walked up it.

Everyone.

Now, if I wasn’t going to be climbing the stairs, why the hell would I go and climb the escalator? The entire point is to spare me that climb, right?

But I couldn’t use it that way. If I stood still on a single step, that would clog up the line of kids studiously climbing, climbing. They were narrow enough for two small people to stand side by side, but then not everyone is small, and we also had to carry our bulky book bags and such with us. So if one person stays still, there is a bottleneck effect — only a trickle of people can squeeze through, and everyone else gets stuck behind you standing still.

Assuming everyone in that crowd is healthy, someone who stands like that and creates that kind of jam is, again, kind of an asshole — right? So what was I supposed to say? “I’m disabled, sorry.” While everyone stares at the back of my entirely healthy-looking body for the next few minutes.

Right.

So: what was I left with? Well. The stairs were pretty free. Maybe I could have started to carry a cane, just to visually signal to people that I was sick. Even though I didn’t need that cane and wouldn’t know what to do with it. Do I hunch myself over, tousle my hair and do my best to act like I’m ninety years old and barely hanging on? Just so people would maybe, just maybe, believe me?

Or maybe… maybe everyone else involved could have stopped and thought about how their actions were affecting other people. Because I sure as hell wasn’t the only one facing this dilemma.

Just because the elevators and escalators existed did not mean they were therefore accessible to the people who needed them. Because accessibility is more than structural. It also counts on the actions of each individual.

Yes, you are part of the problem. There are times where you are in the way, where your actions are creating difficulties in someone else’s life. And you probably can’t even see it. But, you know — maybe you would — if you started looking.

25 Comments

  1. I find it hard to believe that so many people would wait that long to take the elevator (where do they get the patience?), though I can completely believe that they would prefer the elevator to the stairs. I see people using automatic doors all the time, using electricity, possibly wearing out the switch, when using the manual doors would keep their upper body in better shape and cost almost nothing in terms of time and energy.

    I suppose the school would want you to have a pass, like the parking space passes, to accommodate you. Frustrating.
    .-= Anemone´s last blog ..Asians in the Vancouver film industry =-.

  2. We’re talking about the school where you had to budget an extra 30-60 minutes on your commute (no, I do not exaggerate one bit) to drive around the parking lot/structure searching for people leaving to open up a space. People did wait that long for an elevator. I had to add it to the time I got up every morning to be ready in time, leave in time, and get to class on time.

  3. In my experiences on college/university campuses, students seem to have an infinite capacity for patience when it came to waiting for an elevator so that they can avoid taking the stairs. I’ve also noticed this with airports, public transit, etc.

    During my time on campuses, I became very familiar with the network of hidden/service elevators which most students did not know about.

  4. I was so grateful when I got my cane, because it gave me an excuse to ask for seats on the bus, or first dibs on the elevator. (Though, my school keeps its elevators accessible by making sure they’re slow, small, smell of pee, and placed where no one not following the tiny wheelchair signs will find them.) I also found that my anxiety had a lot to do about it, since I have social anxiety–on days when I had more mental spoons, I had the resources to just stand still on the escalator and put up with everyone else’s angry glares. When I didn’t have the spoons I wanted to apologize for sharing anybody’s air, and was willing to walk and take the stairs the long way round, just so I didn’t “inconvenience” anyone.
    .-= Lis´s last blog ..God, I can’t even. =-.

  5. I found this post really interesting. And it’s such a great example of how the individual changes a person can make DOES have a positive effect on others.

    I remember when I was younger, I used to love using the accessible washroom stalls (I don’t have a disability), mainly because they were so ‘roomy.’ But then I read some kind of ‘Dear Abby’ letter from someone who was pissed because she, an able-bodied person, had been ‘butted in front of’ by a woman using a wheelchair when the accessible washroom became available. I remember the response being something along the lines of ‘well what did you expect? You can use ANY of the stalls. Of course this woman was going to ask to go in front of you to use the one stall she’s able to use!’.

    Which made me think, duh… I really shouldn’t be using the accessible stall, in case someone comes in who actually needs it (instead of me, who just has a preference for lots of leg room…). Anyways, it seemed like such a revelation at the time, and I think dovetails well with your comments about people using the elevator.

  6. Those of us with less visible disabilities use the accessible stalls in the hope they’ll have a grab bar placed where it’s actually useful. Some of them aren’t well designed — they’ve got the elements of accessibility but in the wrong places.

  7. I’ve been running into this problem when taking the bus or subway. I can’t stand for the amount of time the ride will take, but I don’t have anything visible to let people know that I do need one of those “these seats reserved for the disabled” seats. Asking for one would mean getting into a whole conversation about why, and for all I know, the person who is sitting in the seat when I got on the bus might have an invisible disability, too, and then I’m putting that person in the position of having to explain it to me.

  8. It is a difficult problem. I’m sorry; I don’t have a good answer, Ruchama. Sometimes it feels like the best we can do is muddle through.

  9. The college i periodically go to has elevators. They have two different kinds of signs right next to each other: one is yellow and black and there are no less than 2 per elevator pair; the other sign is HUGE black text on white. Both kinds of signs say something to the effect that the elevators are ONLY for those students who require them, and for freight. It doesnt *tend* to matter, but i like to think it helps somewhat. Is your school interested in doing such a thing?

  10. Wow! I would LOVE to see more of this type post. There are days when the fatshaming I get for breathing heavily when taking the stairs is just too much to handle :/ but I will absolutely remember this.

    It seems like the escalator problem could be solved by the schools by simply instituting a policy (with signage) that if you want to stand still, you stand on the right, and if you want to climb, you walk on the left. That’s how it worked in London underground when I visited.
    .-= Quixotess´s last blog ..Oppression is a Trauma: Beyond Rape =-.

  11. Romham, you have to be careful with those sort of rules too. It can sometimes take people with invisible disabilities like fibro years to get diagnosed, meanwhile, they can’t physically go up stairs and my be unable under the university’s rules to get these permits. I’ve had severe joint issues since I was fourteen and when I’m bad I physically can’t walk up several flights of stairs. Even on a good day, stairs are painful. My recent irregular sed rates have pretty much ruled out fibro, but arthritis is ruled out due to the severity and length of my problems and the fact that my sed rate is not high enough and my joints look fine under X-ray. I’m scheduled to get an MRI and biopsies soon to check for some rarer disorders, but right now I do not have a specific diagnosis for this (I do have my PCOS and hashimoto’s diagnosis, but that doesn’t explain my other symptoms). My university requires a specific diagnosis for physical disability before they will do anything to get you accomadations. Which means it has been left up to me to make sure my housing and classes are in places I can physically get to. Luckily, we don’t seem to have a lot of elevator issues, but the sort of rule you propose would keep me from being able to reach all but one of my classes on a bad day.

  12. I had a friend in school who had some weird and very rare disease (I’m talking two in 88 million people rare) that basically meant that the muscles in her legs were injuring themselves whenever she used them. She looked skinny and normal and always got weird looks because she was one of three people who had a key to the elevator in school (the key was meant to ensure that the waiting problem you describe wouldn’t occur). It didn’t matter that she had to miss a year because she literally couldn’t get out of bed. It didn’t matter that she had trouble concentrating in school because she was constantly on pain meds. What did matter was that she looked normal and healthy and that she didn’t play it up by cringing and whimpering with every step she took.

    At least at my university, students for some reason don’t use the elevators and take the stairs instead. It might be due to the fact that there isn’t much waiting room in front of the elevators, enough for maybe fifteen people, and that the people who want to take the stairs have to go through the narrow space. Waiting for an elevator is annoying, so people only do it in one building, and that’s only because the university rented the rooms from the 8th floor upwards.

  13. I’m one of those people who has limited mobility but I don’t have a diagnosis yet (I’m seeing a rheumatologist this week; so far I’ve just been calling it “the as-yet-unnamed chronic pain/fatigue condition). I have just started using a walking stick which makes movement a little easier, but I feel a bit fraudulent asking to use the lift/disabled toilet/special seats on the bus because if people ask “Well what’s wrong with you?” I can’t answer them. All I can say is “I don’t know.” Without my stick I look just like any other TAB, except I’m not.
    .-= Anji´s last blog ..Blogrollin’ =-.

  14. I did forget to add when this was originally posted, so I’ll note here that this was posted a little while back, and I haven’t been at Fullerton since ’05 🙂 It’s a commuter school in SoCal, which may be why people tolerate these things to a ridiculous extent (waiting for elevators, driving around the parking lot watching for someone walking to their car etc.)

    Also, I do not expect anyone to start climbing the stairs if they have a reason they don’t already. If you have trouble breathing, or it causes you pain or fatigue, or etc. I don’t want this to be policing the people it’s supposed to help.

    And yeah, bus seats is another version of the same dilemma. I tried standing on the T one time — one. Because I was recovering from *that 20 minutes on the train* for 2 weeks after, to the point that I could not leave the house more than once each week — I was in awful, awful pain from the standing, the balancing, the trolley lurching and tilting… now I dont feel guilty for pushing my way in front of other people to get to an empty seat, and my husband usually hangs back until he can get on w/o that pushing, and stands next to wherever I end up sitting 🙂 I haven’t had to ask somebody — yet — because I made the deal with myself to push my way in front. Why one feels easier to do than the other, I dunno, but I don’t want to sit there and have a conversation with strangers about my medical troubles as the price for getting the seating I need because of them. That isn’t a fair trade.

    (More things abled people can do: PUSH BACK when people do police that line of illness/disability, comment on someone who they feel doesn’t deserve whatever accommodation, etc. How do you know what’s going on in their bodies? That kind of thing. Because these problems arise almost directly from those attitudes — there’s a reason we PWD don’t feel comfortable asking for accommodations.)

  15. Something I appreciate about Seoul is that they have signs on thing indicating that if you are walking on escalators you must use one side and if you are riding you must use another (most of them are wide enough for this). One of these days I am going to do a photo expose on accessibility in Seoul…it is kind of awful in some places and great in others.

    I finally got tired of crying on the subways from the pain of standing for three trains and not being able to get out of bed/off the couch for days afterward and had to ask for a cane/walking stick. People still look at me funny for using the seating, and the three seats per car set aside have to be shared with the elderly, and even then you have to fight the people who don’t care…but it has helped a little. Even when they are full I would never try to ask for a seat, even w/o my language barrier.

  16. Excellent post! It’s amazing to me how people will pay so much money a month to have membership to a gym, and yet they have to get the closest parking space and take the elevator. That’s FREE exercise they’re throwing away! Meanwhile, people who really need accessibility are forced to make excuses for themselves.

    Sarah Norman
    Assistive Technology
    a division of Easter Seals Crossroads
    Disability Services. Our emphasis is on ability.
    http://blog.eastersealstech.com/
    .-= Sarah Norman´s last blog ..Assistive Technology Alerts People with Hearing Loss =-.

  17. Cathy, its not my rule lol. i get that there are variations, and imperfections. It’s only a guideline, and people (obviously) decide for themselves whether they are included in the category of folks the elevator is intended for. You dont need a medical diagnosis or a visible (to sighted people) indication to get on the elevators, and being disabled folks arent the only ones who would benefit from using the elevator. i understand from living many years without assistive devices that when folks dont perceive a disability they give the stink eye. And that sucks. i highly doubt that all the folks getting on the elevators at school are disabled, and thats ok. It’s just a guideline. And to a certain extent, i think it helps.

  18. This is why all schools should have elevators accessible by key only, like the ones at my high school were. Schools should not rely upon students to make the right choices (cuz that’s obviously not working), they should not let the wrong choices be an option.
    .-= The Nerd´s last blog ..So Right, Yet So Wrong =-.

  19. I disagree, The Nerd. I don’t feel one needs to declare one’s ability status in public that way. Eventually you get people talking about who’s “really” disabled and who “faked” having a disability to get a key and who’s just “lazy”.

  20. Yeah i definitely dont agree with a keyed system. All kinds of people need the elevator, which is why a simple sign highlighting that “some of our students are not able to use the stairs, please keep this elevator free for them/they have priority on the elevator…”.

    ive had situations where i’ve had to use a keyed system for lifts and such, and it is a serious pain in the ass.
    – It took me more time and energy to go get the person with the keys (and sometimes they werent even around) and sometimes i was late to classes because of it.
    – i didnt dig the conversations i was expected to have with the key holders about my body. ick.
    – i didnt like how it singled me out.
    – i didnt like how other folks who werent so easily pitied for being a gimp (because i do use assistive devices which ENabled people seem to associate with being a gimp = pitiable = ok you get the keys–which no, isnt a privilege, but thats a whole nother thread) werent granted access so easily (or at all)

  21. Aw, Anna beat me to it. I dislike the key/keycard access idea for all those reasons; I don’t like the idea of authorities arbiting disability status and deciding who gets to use the elevator, and it’s a terrific way to force people to disclose their disability status, once it becomes commonly known that the only people with elevator access are PWDs. Furthermore, I suspect that such systems are also accompanied by pushback from students complaining about “special treatment,” especially of people with chronic conditions and invisible disabilities who “look normal” and therefore “shouldn’t be allowed” benefits/accommodations. And, furthermore, it would not shock or surprise me in the least to learn that able bodied folk were pushing on to the elevators once PWDs opened them.

  22. I have a metabolic condition where sometimes I have energy, and sometimes I don’t. And sometimes I take the elevator, and sometimes I don’t. The situation you are outlining here is really extreme (very long elevator wait lines), but at the same time, how can a total stranger know your struggle?

    I’m not saying what you are writing here is wrong as
    1. Its your experience, not mine
    and
    2. I am a fairly neurotypical, able person and I don’t always have spoon days, but when I do, I don’t mind asking. And most people on my campus don’t mind scooting over or relinquishing their spot in line.

  23. Well, a total stranger can be aware that elevators are reserved for people with disabilities, and make a choice to take the stairs or use the escalator instead, thereby freeing up the elevator for people who actually need it. Likewise, total strangers can not co-opt services set aside for people with disabilities, and stop policing disability status to decide who should and who shouldn’t be allowed access.

    It’s fine that you feel confident asking for accommodation, but many people do not (I do not, for example), and, more importantly, we should not have to ask people to stop using services set aside for us. Not least because we might accidentally challenge someone with a legitimate right to those services by assuming that ou is not disabled when ou in fact has an invisible disability or chronic condition. Which is one reason I do not ask people to get up for me on buses, to yield to me on elevators, etc.
    .-= meloukhia´s last blog ..Things That Happen, Things That Shouldn’t =-.

  24. My experiences with a keyed system were terrible – and I’ve written about them here already. Firstly, the key itself was difficult to get, with multiple failure modes. Firstly, I needed to get doctor’s documentation. Not everyone has access to that; not everyone has a diagnosis (yet/at all); not everyone has a doctor who’s not shouting “DIET AND EXERCISE!!!” in their faces.

    Then, I had to travel to not one, not two, but three different locations on campus sequentially in order to set everything up. Two of these places didn’t even have seats in the waiting area. The whole thing was ridiculous.

    Then, if I forgot my key, or it didn’t work, I couldn’t access the library.

    Also, a lot of people have temporary impairments which would benefit from elevator access. Should everyone have to get a doctor’s note and go through a baroque approval and equipment process every time they sprain an ankle or have bronchitis?

    This sounds very much like the conversations that occur around service animals. “Just require a permit!” people shout, without having the first idea as to the burden that places on PWD just to prove they have a right to access the world. Our second (third, fourth) shift really doesn’t need more work shoehorned into it.
    .-= lauredhel´s last blog ..Linkblurt: We Are Immobilised =-.

  25. I think my reply got lost because I was posting on my phone and it mucks up sometimes. If this is a repeat just delete it.

    I think the onus should be on able-bodied people to not use accessible services, not on people with disabilities to prove they need them. That’s probably obvious to everyone here, but in this world some people can be utter jerks.
    Something I thought of while I was on the bus today was seating. It’s one thing to not sit in the priority seats, but if the bus or train is crowded and you can stand, then stand. Give that seat to someone who might need it more than you. I’m thinking solely of able-bodied people like myself who can stand for long periods without any problems.

    I never did that before. I always thought “I’ll stand if I see someone who needs it more than me” but you just don’t *know*. thank you for this kick up the arse. It’s terrible that it needs to be done 🙁
    .-= PharaohKatt´s last blog ..The Spoon Theory: How Does It Affect You? =-.