In which homework is assigned

This post was originally published at Zero at the Bone in August 2009. In it I ask the abled folk among us to think beyond the (very important!) need for systemic inclusion of disabled people, to what they can do as individuals.

I’m going to talk about accessibility. I want you to have a think. Then I want you to pause, reflect and keep thinking.

Before I start, think about what disability access means to you. What sort of things does accessibility require? Make a note of what comes to your head.

While you’re working on that, I’m going to tell you what I often do when I arrive somewhere new. I scan my surroundings to determine how accessible the particular space is. Is the furniture too high or too low or too small? Is there enough space for a wheelchair/scooter to pass through comfortably (with space left over for a companion)? Are there windows? Is there any mold? fresh paint? air freshener? Is there enough space to breathe or get away from other people? Is the lift/ramp in good order and close by? Are there railings? Are there (solid, multiple) chairs? Are there any sharp edges or prominent features that could make movement unsafe? These are just a few of the things that may go through my mind. And I do it all as quickly and discreetly as I can, because I don’t want to stand out to any abled folk who may be observing me. And you know what? Most of these things, most of the time, aren’t relevant to my disability. I’m looking out for my fellow PWD. Which is to say that these things are not that hard to pick up.

Now, when you were thinking about disability access, you probably thought of transcripts and ramps and disabled bathrooms. And those things are important. But did you think about invisible access for invisible disabilities? Where well-known accessibility measures like those transcripts, ramps and bathrooms are often not available (or not properly) the measures that don’t immediately spring to an abled person’s mind don’t have a hope in hell.1 And, speaking as someone with an invisible chronic illness, having to out myself in order to perhaps be granted access, with the very real possibility of not being believed, is one of the most unpleasant parts of my life.2 I doubt you thought about access to services for people who aren’t accessing them in person. I doubt you’ve ever thought about how to give directions without visual reference. In fact, I bet most of the things you thought of were those that were in your face.

Which brings me to my next point. Accessibility is not just about alternatives and gadgets and adaptations. It’s about you.3 It’s about all the abled people who are in charge of accessibility measures. And that’s not just those of you in a position of authority, that’s you making your way down the street. Remember, you often don’t know who is and who isn’t a PWD, and you don’t know the kind of impact you’re having on them. The world is designed to suit the abled, and it’s every last one of you impacting us. It’s about your attitudes making our lives harder. (Did you ever consider how awful it is to have a loud, public discussion of one’s needs? Did you ever consider that forcing your idea of help on us might be detrimental? Did you consider the kind of devastation you privileging your perceptions over our experiences can lead to?4) It’s about whether you decide our enjoyment, our livelihoods, our life experiences and our humanity are worth your attention.

I am asking for your attention.

Now, I want you to think radically. Accessibility should not be framed as making adaptations to suit those others, those deviant disabled bodies and minds. If there is a space, text, service, mechanism, happening, situation, tradition, something that people are going to engage with, everyone needs to be accommodated.5 My point being. Don’t think of us as others, even deserving others, you must reach out to and adapt to. We’re not brave, broken little souls. We’re human beings. Think of every single person having different needs and circumstances, and centring those people who are having a tougher time of it. Think of providing everyone with what they need. If someone needs more than most, they ought to be given it. Not because they are other, but because they are a person. We’re no more other, or tiresome, or disgusting than you with your various troubles, quirks and loves. The only difference between you and me is that the world has dictated that I am low and you are whole. That’s all.

Think of privileging those bodies and minds that are marginalised in so many spaces. If you think that it’s too daunting, too much, consider what it means for PWD and consider that you’d be happy to do it if it was you. You adapt to circumstances all the time, and you may want to examine your motivations if you’re reluctant to accommodate PWD. Do whatever you can do with the resources you have. Access for my kind of people should not be an afterthought, it should be right there, in your plan, in your consciousness, because it is at the very least as vital as the kind of attention you give everybody else.

I want you to rethink access. Mostly, I want you to THINK.

I have some related links for you to help you with the thinking:
Alena of Perspectives from a Blind Point of View – fabulous blog, by the way – asks What Does Accessibility Mean to Me?
You may have heard of feminist science fiction convention Wiscon. I haven’t attended myself, but they seem pretty accessible from their website. This is an example of doing it right.
WildlyParenthetical delves into invisible disabilities and how they get that way.
I picked up the phrase ‘invisible access for invisible disabilities’ from Lauredhel. She has some suggestions on the subject here.
If you want to learn more about what kind of thing can constitute privileging your perceptions over our lived experience, specific to invisible illness, see annaham’s Invisible Illness Bingo and Invisible Illness Bingo 2: Back for Revenge.
See Jo Tamar’s Accessibility, choice, accomodation and equality. Because alternatives aren’t always good enough, and they’re frequently a tool for demeaning us further.
Cripchick and commenters have lots of suggestions.
Also, this.

Remember that all this, this post, these links, are background. There is no prescriptive means of dealing with PWD; we are not a monolith. Consider the person you’re dealing with as an individual with individual needs. I can barely believe I actually had to type that.

  1. Actually, hell’s probably more accessible than some of the places I’ve been to.
  2. And you would just laugh at how utterly bizarre that is if you knew the nature of my illness.
  3. For me personally, it’s mostly about you. Other people have a different ratio with regard to these things.
  4. ‘You look much better today.’ ‘Maybe you should try losing weight.’ ‘Maybe you’re just tired.’ ‘Are you sure that’s what happened?’ ‘My cousin’s boss’ sister’s friend’s tried this thing you should try.’ Just don’t. How dare you presume that we don’t know how to handle ourselves? If we want help, we will most likely ask. These suggestions act to obscure problems, meaning that we’re not given the help we want/need because everyone else has moved on, ’cause you’ve already solved it, right? You do not know better than us.
  5. Were you thinking in terms of access to buildings? Open your mind. Think about daily experience.

17 Comments

  1. Okay, so I play in one of those medieval fantasy combat groups — I do a lot of planning now that I’ve decided my hip can’t take that and dancing any longer. One of the things I’ve been wanting to do is figure out in advance some common accessibility things. Some are not in my control: our outdoor event site is still a work in progress, physical accessibility is on their long term plans, but I don’t control it. They are aware of the things they need to work on for the population we already have.

    But many are in my control and since we are an university organization, we must make reasonable accommodations. But we’ve always reacted instead of being proactive, and this bugs me. Yes, it’s good that on the fly we changed how we did battles when a deaf student joined, and that has stayed the same.

    But I must confess, I’ve hit mental roadblocks, because as an organization we find it easier to react. The most I have been able to do is identify trainers etc for people who need additional/personal training due to information processing issues, autism, etc or alternative modes of information presentation.

    As I type this out, I think we can sum up how we work as “Consider the person you’re dealing with as an individual with individual needs” which I guess isn’t a bad place to start. But it depends on people coming to us first.

    Course, we have the larger problem of having a “nerd frat-boy” mentality, which doesn’t help either. It’s not always welcoming in general.
    .-= nuri´s last blog ..Rukus says Feminist like it’s some sort of dirty word =-.

  2. Great food for thought and very well put–I will bookmark this to share with others when I’m trying to explain why “wheelchair access” (usually halfway) isn’t enough. I’ve started thinking about accessibility more broadly, but there are still a ton of things I don’t notice right off.

  3. If only PWD (and w/o for that matter) looked out for each others’ access.

    Too often it turns into “mine is more important than yours”. And that isn’t ok. Too often it turns into a hierarchy where if people can see what you need, it matters. If they can’t, it doesn’t, or if when they can it scares the everliving piss out of them, it really doesn’t because then they have to acknowledge it (flashing light apologists, I’m looking at you. And glaring. And preparing to throw things).

    It’s so frustrating. Everyone *should* be able to go everywhere, safely and without unneccessary barriers. Isn’t that part of the point of progress?

  4. Thank you very much for this. I’m TAB and I’ve been trying to learn and understand more about acessibility issues and ableism in the past month (since I stopped being so depressed I didn’t want to do anything), and this is exactl the sort of thing I’ve been looking for.

    Of course, this whole blog is brilliant and has taught me loads, but this post is particularly helpful.

    Thank you again.

  5. I like looking around and assessing the accessibility of a place. Unfortunately, I still tend to think of “visible” disabilities first and my own issues second.

    This kind of thinking has been at the back of my mind for as long as I can remember – my mom works with “special ed” kids, many in wheelchairs.

    One thing I’ve noticed is that when you have to create your own accommodations – when it’s temporary or whatnot – people are really accepting. Or they have been in my case. One time, I could not sit due to a nasty skin infection. But it wasn’t so bad that I couldn’t go to school. I remember standing in my “Facing History And Ourselves” class discussing “Harrison Bergeron” and how our own bodies can create limitations. I also remember standing in US Government, and one classmate stood with me, so I wouldn’t “be alone.” I don’t remember her name, but I still smile at the thought.

    Of course, I role my eyes at the study hall watcher, telling me to sit while she took roll.

    One thing I’ve noticed more lately than accessibility issues is trigger issues. Even though X doesn’t bother me, I can see how it can bother someone else. (See my comment on Chatterday about the radio ads with fake 911 calls – I’ve never been in that situation, and I was creeped out. How would someone who had felt?)

    Though on Friday – appointment with Dr. Ego, needing to lay down – I did discuss the visual accommodations in the form of the ramp with my mother, asking questions she could answer.

    Anyways, I’m trying to get out of my own head more and more, and that is never a bad thing.
    .-= Kaitlyn´s last blog ..It’s so nice when one pic sums up your day =-.

  6. I too will be bookmarking this to show people who assume that ‘accessible’ just means having a ramp and a disabled toilet, or who, upon hearing about my invisible mental and physical disabilities, immediately launch into how X treatment (normally totally out there and woo-woo) is exactly what I need and I’ll be cured forever.
    .-= Anji´s last blog ..Carnivals! =-.

  7. @Kassiane:

    If only PWD (and w/o for that matter) looked out for each others’ access. Too often it turns into “mine is more important than yours”. And that isn’t ok.

    Tell me about it… I’ve even seen this sort of thing happen online, where you would think this might be less of an issue.

    It amazes me how many times someone will link to a disability-related video that looks like it’s quite interesting from the brief summary that’s given, but the video ends up being someone sitting or standing in front of the camera and giving a speech (perhaps the most uninteresting visual possible). And no captions or transcript, not even more than a one-sentence summary. And if I’m really lucky, the video will have a lot of reverb or bad sound fidelity so that I can’t make out half of what’s being said even if I do concentrate.

    And of course, when I complain about it to the blogger who posted it, usually nothing gets done. And sometimes, even when I ask commenters to help out and summarize, still nothing gets done. >_<

  8. Great post on what “accessibility” really means. Too bad more people don’t think to put themselves in the other person’s place, to figure out what’s actually needed. Not to mention–as Kassiane points out–when the good old Divide and Conquer one-upmanship kicks in. *sigh*

    I’ve been trying to figure out how to make my own blog (and other stuff online) more accessible to more PWD, and this led me to some things I hadn’t thought of. Even trying, sometimes it’s hard. I wish more people would try. 😐
    .-= urocyon´s last blog ..Being kind to your body, and nasty assumptions =-.

  9. I love the link to the sci-fi convention. While they didn’t/financial couldn’t address every accessibility concern, they definitely made more of an effort than most places.

    I like how one of the links listed above had a link about making websites more accessible, something that doesn’t get addressed often enough. Having colorblindness, it’s a real pet peeve of mine. You don’t have to compromise your design to accommodate others online (and sometimes it’s for the best design-wise – if I never see a blood red with dark grey text site again, I’ll be a happy camper). But I can’t smirk too much, because I have some work to do to make my own sites accessible to folks with other visual disabilities, like providing descriptions for images.

  10. Thanks for your comments, folks!

  11. I *wish* “transcripts” was one of the “first things to pop into people’s heads.” Given the time I spend searching for transcripts and captions to stuff, I’d have to say, it’s really not on people’s radar either.

    Takes time to learn about all the ways to think about possible accomodations. I try to be aware of this stuff and was still floored a few years back to learn of “captioning for the blind,” namely extra narrative along the lines of “Our hero is approaching the stairs and is looking around…”

    I suspect I’ll continue to learn for a long time, which is why I always appreciate these kinds of posts…

  12. Peanutbutter – I’ve watched a movie with “captioning for the blind,” and it was a surreal experience at first, but I got used to it. It was my library’s copy of Bollywood/Hollywood – and they described the dances, and the woman doing the narrative added emotion to her lines.

    At first I just thought it weird, but now I’m looking back on it and wondering what else my library has for the blind – I hope that B-grade movie isn’t it!

    When it comes to DVDs, I love using English subtitles, even with English language movies. And my hearing is fine – you just can’t catch everything.

    As for finding transcripts – the first thing that popped in my head is a website where you can get proper subtitles for Bollywood movies (and maybe other foreign films). Second thing is websites like snpp.com and I forget the other one, but transcripts of X-files episodes. When I was really into the X-files, I read those a lot.
    .-= Kaitlyn´s last blog ..Living at home does not make you a bum, Judge Judy. =-.

  13. I was reminded of this post recently when my mom told me about wanting to put a bench on the empty spot next to my gran’s grave. My mom likes to talk to her when she goes, and says she can do so better when sitting down. But my aunt didn’t want there to be a bench (what woould people think?) and to preserve peace, my mom put it away.

    (For clarity, because I know cemeteries are different in other places: In Germany, there are usually flower beds on the graves. Each grave is seperated from the others as well as from the paths between the graves, usually by some kind of low stone
    border.)

    While we were talking, I got to thinking about what having a possibility to sit down at the cemetery, in front of the grave one is visiting, might meant to other people. For my mom, it is just about not wanting to “look down on” my gran while talking, but what about others?

    People with invisible disabilities like chronic pain conditions might not get to spend as much time as they want visiting their loved one’s graves because they can not stand for so long. The same is true for people who tire easily, get out of breath or have other reasons for needing to sit down. A majority of the people who spend a lot of time at the cemetery are elderly people, who are more likely to have such problems. And even if we assumed an average spread of ages in the people who come to the cemetery, there would still be a high percentage of PWD, who might need a place to sit down.

    Also, I know there are gardeners who can be hired to take care of graves when a person is no longer able to do so on their own, but for those who are still caring for the plants themselves, the watering cans are heavy when full, and can be quite a way from the plants that are to be watered.

    How could one solve a problem like this? My first thought regarding the watering cans was to place some kind of pully or trolly at the water pump for those who might not be able to carry a full watering can. What kind of device would be best, accomodating the needs of different disabilities (What kind of handle would be good for people with rheumatic fever? Is pushing or pulling easier? What other capaicities need to be thought of?)

    Regarding the possibility to sit down, my first thought was of putting up an open shed with fold out chairs for people to take with them and then bring back when they are leaving.

    Aside from practical issues (they would have to be stable, good quality chairs; there might need to be cushions for people to actually be able to relax in them; they would have to be easy to transport, maybe have wheels attached to at least two of the legs) there is the question of whether these would actually be used.

    I remember hating the way other students stared at me for the six weeks that I had to use a special chair after my (useless) operation on the ruptured disk. Would pwd want to “out” themselves by bringing such a chair to the grave? Would the elderly feel like they might “cause a scene”?

    I would love to get some input from the much more knowlegable people here before I try to find the right people to address about putting some kind of plan into action. My eperiences have been mostly those of a TAB, so I am bound to make mistakes and miss things that should be obvious. Any and all advice, as well as any criticism, would be very welcome.

  14. I haven’t got any advice, I just wanted to lend my support. I think those are such great ideas! All the best.

  15. Is there any way to sort of open the question to the community?
    I am constantly amazed by all the insightfull comments here. I really want to make sure that I am not missing anything important that should be obvious but isn’t to me because of my able-bodied privilege.

    It would be better, I think, to have a very clear idea of what would be neccessary before approaching people about things like funding etc.

    Either way, thank you for your encouragement. I am so greatfull for this community, which is constantly broadening my horizons and giving me so much information I would have never known to ask for.

  16. You’re very welcome. Perhaps you’d like to try putting it forward in the open thread this weekend for a start?

  17. That’s a great idea, I’ll definitely do that.
    Thanks again.