Umbrella Terms

My pet peeve: Labeling “othered” groups as though everyone who falls under that umbrella term has the same needs to achieve full inclusion in society.

For obvious reasons, I’m going to focus on the umbrella of people with disabilities/disabled people right now, but these thoughts have been heavily influenced by reading posts from GLTB activists about trans* inclusion (or lack thereof) and blog carnivals like the Asian Women’s Carnival and International Blog Against Racism Week.

Over the summer, while I was in the process of ranting to Don about my disappointment with our current government’s inclusion of people with disabilities, I was stopped on the street and invited to a talk. “Is it fully accessible?”, I asked.

“Oh yes,” responded the person inviting us. “We have a wheelchair ramp.”

“Do you have material available in braille? Do you have a Sign interpreter?”

“No.”

“Well then,” I snapped. “I guess you aren’t fully accessible, are you?”

(As I said, I was just ranting about this when we were interrupted with this invitation, so it was already on my mind. People need to pick better times to interrupt me. I’d like to think that normally I’d be more polite.)

There’s a certain hierarchy of accessibility that “everyone” knows about. If you have a ramp, you’re good! That this doesn’t address the needs of any number of disabled people is irrelevant – the main image of people with disabilities is that person (usually white and male) in a wheelchair.

So, in the effort to be inclusive without thinking thoroughly about what disability means, and who is included when making accommodations, we end up with situations like this one, from the comments on a post on disability at Feministe:

Willow:

Fire alarms. So it’s great and all when fire alarms have bright flashing lights in addition to the blaring sound, so people with hearing loss (like my dad) will know if the alarm goes off and be able to evacuate, right? Yeah, well, it so happens that I have photosensitive epilepsy, and the light on pretty much every alarm cycles on a frequency that triggers my seizures. So if the alarm goes off, not only do I have a seizure, which sucks in the first place, but I also cannot evacuate the building because I am either (a) unconscious and convulsing or (b) in “zombie mode” and unable to navigate the world safely.

I always feel so, so guilty about advocating for accommodations for people with epilepsy that will make the place unsafe for people with other disabilities…but at the same time, I have EXACTLY THE SAME RIGHT to be able to be there and/or be safe there. It seems as though some types of disabled people–deaf, blind, and/or in a wheelchair, in particular–are privileged over others. I lived on campus as an undergraduate, and when the school installed a new fire alarm system that included flashing lights, I was told that they would have someone “come check on me” whenever the alarm went off. Excuse me? You can’t have someone come check on the zero deaf students in the building but the three of us with photosensitive epilepsy have to wait until the fire department shows up? Not to mention the risks that come with having a seizure in the first place (such as, for example, death)?

Thoughtless accommodations, but gosh darn it, we’re “accessible”.

I know next to nothing about epilepsy, and my knowledge of deafness is limited, so I have no idea what sorts of accommodations would balance both the need for a flashing alarm and the need not to cause seizures in people. But that’s not my point. The point is that full inclusiveness, rather than going for the “easy” solution, would actually consider those needs and work them both in. It would be working with people with disabilities to design safety systems that would accommodate everyone. (Deaf people can also have epilepsy, after all.)

Grouping “othered” populations under this umbrella term allows the “general” population to decide “Oh, I’ve included a ramp, I’ve got a flashing light, and there’s braille on my elevator buttons, I’m set.” But we don’t all have those needs.

We’ve been grouped together as having the same needs both because it’s easier for the “general” population to decide they’ve “done enough”, and because we have greater strength in both self- and group-advocating when we band together. But, just like when other “othered” groups band together, things get left out, put aside, maybe next yeared.

I’m still mulling all of this over. My main activism-related issues are The Big Ones – my city is full of “just one steps” and has a serious lack of Sign Language interpreters. But right now, I’m sitting in a room with fluorescent lighting (severe migraine trigger). It looks like the fire alarm is of the flashing-light type. The door is pretty darn heavy. I haven’t seen a single TTY- pay phone on campus. And probably several other things that I’ve missed.

It’s almost like the easiest, umbrella-term solution isn’t the best one.

I’m still thinking about a lot of this stuff – I certainly don’t have all the answers. Feel free to get into it in the comments. (My schedule is such that I won’t be able to respond to anything until evening my time at the earliest, although other moderators will be approving comments for me.)

22 Comments

  1. This might be slightly off-topic, but how fast do those alarms flash? I’m only deaf in one ear, but I’d probably find one of those useful if they flashed at the right speed – anything too fast doesn’t wake me up if I’m asleep.

  2. It’s extremely rare that access needs are genuinely mutually-exclusive – and this is often used as an excuse for doing as little as possible. “If we had a chair so you could have a sit down, it’d get in the way of wheelchair access.” and so on. Similarly with the flashing light example; there are flashing lights, and there are flashing lights which could stimulate a seizure.

    But very much of the time, catering for “simple” impairments like wheelchair-use, blindness and deafness has a knock-on effect for people with more complex needs. For example, extra space, wide doorways, shallow gradients, rails and so on might be provided with wheelchair-users in mind, but there will be lots of ambulant people with various types of mobility impairment who benefit. So covering “the basics” does go a long way.

    However, we have to see access as something more nuanced as the built environment, as just “the way things are set up.” Given that not every conceivable need can be met in every circumstance, half the battle is to get people thinking along the right lines.

    So to the question, “Is it accessible?”

    The answer should always be, “We hope so. What do you need?”
    .-= The Goldfish´s last blog ..Unfit for Office =-.

  3. So to the question, “Is it accessible?”

    The answer should always be, “We hope so. What do you need?”

    Quoted for truth.

    I like my university. It has nice people in it. But their “committment to accommodating students with disabilities” doesn’t play out well in practice. As two relatively “minor” examples, any door in this building that isn’t wheelchair accessible doesn’t have a push-button to open it, because obviously the only people who would have trouble opening a door would also not be able to handle stairs. To use the elevator into the basement of one of the buildings, you need to find a security guard, which has a whole set of problems with it.
    .-= Anna´s last blog ..Clever people wouldn’t even try! =-.

  4. Sammie, my quick reading says they’re supposed to flash at less thatn 3 Hz. Anything above 5 Hz is a problem, and people should aim to have multiple ones in a room flashing at the same time.

  5. I think of the problem not as having to do with the umbrella so much as the default; most people’s typical, default image of a disabled person is of one in a wheelchair. Exceptions to that default confuse people, and their response often seems analogous to that of someone being called out on racial tokenism: “But I included [my default image of someone different]! Now you want more?”

    I remember one very good experience I had when I went to a museum exhibit that was narrated by recording. I’m hard of hearing, and asked if they had any written options. They were confused and flustered but friendly, and eventually dug up a written copy of the script that I was able to use. They admitted the issue, gave actual thought to it, and came up with a solution that would work for me.

    Actual thought – not rote actions. It should really be so simple.
    .-= Heather Freeman´s last blog ..Say you’re drowning…. =-.

  6. @Heather: That’s another thing that gets me: so many of these sorts of accessibility barriers could be solved very easily, with minimal or no additional cost. I can understand people not thinking about such issues, but when they’re explicitly pointed out and the people in charge still refuse to do anything, or keep saying “we’ll get to it later” for months on end? Urgh.

    (One of my personal pet peeves in this respect, incidentally: organizations which, despite having a web presence and Internet access in the office, only give a phone number for contact and no e-mail address or web-based contact form.)

  7. That’s deep and difficult, Anna. Thanks for sharing.
    .-= Jha´s last blog ..Malaysiana: This Is The Only Malaysia We Have =-.

  8. Anna – Thanks for looking that up for me!

    Codeman38 – I absolutely hate that too 🙁

  9. Interesting and thought-provoking post Anna.

    My parents were actually building an office for work attached to the back of our house a few years ago and the only thing they had to adhere to (with regards to accommodating people with disabilities) was installing a wheelchair ramp. That was it according to the city codes. This was several years ago so the laws may have changed though.

  10. And flashing lights at even epilepsy-safe frequencies manage to immobilize me and give me a massive headache. I can handle the equiblvalent of turning a light on for three seconds, off for three, and so on, but not a lot faster. And yet I am told that it would be illegal to turn off the strobelight on my fire alarm so I could evacuate instead of freezing in place.

    When I could walk, a major access issue was perceived boundary lines. Such as carpet switching to tile, cables going across the walkway, etc. Those could also make me get stuck on one side of them.

    I only have object permanence if I am not occupied with trying to do something or process too much information. A closed cupboard much of the time might as well be a blank wall as far as understanding there are things inside it. (I have starved within two feet of cupboards full of food because of this.) A cupboard with a glass door is a godsend. I have similar problems interacting with dynamic display communication devices, while communicating I can’t remember there are other pages available. In order to use one I need to be drilled on using it until each word enters motor memory.

    I similarly need to use something like motor memory to interact with most objects, so they need to always be left in the same position much as they would for blind people. If they are lined up in a logical sequence that is even better.

    And that’s only the rudiments of nonstandard access for me. Nobody ever thinks about this stuff. And I am not able to fully describe what is most accessible to me, although I notice that environments designed for people with severe cognitive impairments are easiest (since when I begin to have to work at things I develop a temporary version of similar impairments). But I am so unused to such environments existing, even in my own home, that I am not able to list everything that would work best for me.
    .-= Amanda´s last blog ..Stuff I’ve been reading. =-.

  11. Thank you for the post! It really is rather frustrating when my disabilities aren’t taken to be “real” or “serious” because I don’t fit the idea of “disabled”.
    I thought that the flashing lights with fire alarms might cause seizures, but I wasn’t sure. I’m curious as to what my university does about that, because those suckers are all over campus, and I’m willing to bet that there are students/faculty that would have a problem with that.
    I know for me, I have problems with some professors not understanding that sometimes medical issues take precedence over their class, and I have to skip to stay healthy/alive. I also have the problem that profs/TAs think my insulin pump is a cell phone and try to take it away (it’s connected to my body! That hurts!) or fail me on an exam because it beeps. *grumble* *grumble* *grumble*
    .-= mocha´s last blog ..Newsflash =-.

  12. I went to a campaign school last weekend, and there was a wonderful guest speaker who talked about making your campaign accessible in terms of accommodations, and one of the things she mentioned was the “default” image of disability to so many people is a man using a wheelchair, or a woman who is blind. So, they plan things for those two groups, and then just disregard any other needs.

    I do think the Goldfish is right, in that a lot of things that will accommodate those two “types” of people with disabilities will end up assisting a lot of other people, but I don’t think it’s enough. Mostly because I consistently find that people making these decisions aren’t consulting with actual disabled people, but with medical experts or bureaucrats.

    Thank you for your kind comments, everyone – I’ve been so busy all day, so coming back to thoughtful things was nice.

  13. I live on the 9th floor of my dorm this semester after living on the 3rd for the last two years. At first, I felt guilty for all the times I took the elevator and made life slower for those on the upper floors. But sometimes I was too tired, too sore, or too worried about being a clumsy oaf and cracking my skull on the loverly concrete stairs. (Rain, flipflops, and soaked pant cuffs don’t mix with a slippery floor!)

    And while I was chewing myself out for taking the elevator when I didn’t “need” it (no crutches or wheelchair!), I’d roll my eyes or sigh to myself about somebody who looked able bodied taking it down from the 2nd floor. But, after discovering this site, I’ve changed my thinking. I’ll probably still get irritated, but I don’t know how that person feels, how well they handle stairs, anything.

    My dorm is technically co-ed – a male side joined with a female side. No one lives on the first floor, which contains a cafeteria and space to keep us separate. However, it’s considered one building. So if some witty male freshman pulls the alarm at 2 am, everyone has to go outside. (In the rain, or the snow, or the coming tornado…) I don’t know the frequency of the flashing light, but the noise is painfully loud.

    My biggest issue is with this girl who is in a wheelchair. No students live on the first floor. What does she do during a fire drill? (I think I’ve seen her with a walker, but when it’s 2am and the stairs are crowded and that thing is screaming at you… I’m sure it’s the optimum time to use it. Same with crutches for somebody on the 9th floor.) Plus, the building is old and the elevators break.

    So how is legal for her to live on the 2nd floor? I don’t think I can ask residence live, unless I framed it as a hypothetical, and we don’t travel in the same circles/see each other enough for me to just ask her how she lives her life.
    .-= Kaitlyn´s last blog ..The Franken Senate Defense Appropriations Amendment =-.

  14. Yes, this is something I’ve been thinking/talking about lately too. It’s sort of like some disabilities “count more” than others, and some disabled people end up being marginalized even within an already marginalized group, which is distressing. Living with invisible illnesses sometimes makes me feel doubly invisible because I feel invisible even within the disability community at times. I don’t want to feel resentful of people who are also struggling to get their needs met and their issues heard just because maybe they’ve been doing it longer and have had more success at it, but it happens sometimes. It would be better, obviously, to join forces and learn what’s worked for them and how we can apply that across the board. I like that this site seems to be working towards doing that.
    .-= Rosemary´s last blog ..Movie poll =-.

  15. Something I’ve noted when exploring accessibility issues with people is that when they can think of an accessibility issue as physical, they can grasp it. For example, talking to my father, I pointed out that “just one step” doorways are a huge problem, and he grasped it even though he doesn’t require accommodations, because he could get a physical idea of what it would be like to approach a “just one step” doorway.

    But when impairments are cognitive/invisible, ablebodied people have difficulty grasping them, and they don’t understand how unique accessibility needs may be for a neuroatypical. Which makes it really hard to get people to meet accessibility needs, let alone anticipate them or respect them. It’s rarely as simple as “just asking” when you have trouble communicating what you need or when you are not being respected or when people are not willing to work with you.
    .-= meloukhia´s last blog ..The Vamps, They Are A-Changin’ =-.

  16. i definitely agree that accommodations for cognitive/invisible limitations are more difficult for TAB/NTs to understand and appreciate. and i think a big factor in that is the general lack of discussion or attention on how people feel and think. in my work i encounter a lot of low-income folks who feel depressed or anxious or in pain/fatigued but have not sought care for those conditions, because they do not conceive of their condition as differing from the norm. there is so little discussion of how happy or sad most people feel that they have no conception of where a typical emotional baseline is – and if they don’t have an impression of what’s normal/typical, they cannot identify their own condition as differing from that norm.

    I find this surfacing also in discussion of learning disabilities – they are hard for an NT to understand because most NTs have never thought about the processes they use to understand and process information. “I just learn,” is the basic attitude, so they have immense difficulting breaking down the learning process into components and thinking about limitations or complications in any of those components.

    an analogy: someone who is driven by a chauffeur in a limo with blackened windows is going to have a much poorer comprehension of potential barriers that could arise in traveling to and from work than someone who drives themselves. the driver would understand the requirement to be aware of other drivers, the difficulty of merging in high speed traffic, the distracting billboards along a certain street. the passenger would just know that they arrived somewhere.

  17. I think about “invisible illness” and accessibility – because of my epilepsy i need to ride a bike to the subway stop (too much walking will give me seizures). the other week i was not allowed on the subway because i had my bike with me. i argued with the attendant saying that i was disabled and need to bring my bike with me, that i used it BECAUSE of my disability. they refused me entry, and for that reason and a few others, i had a bunch of seizures trying to get home.

    now how do i explain to someone, while standing and holding a bike, that i am physically disabled and need entry on public transportation? i think the image a lot of people have in their minds of “disabled” needs to widen.

    And those loud strobe light fire alarms get me every time.

  18. It just now occurs to me that my workplace is not in ADA compliance. Because, while the entry doors to the bldg are compliant, the entry doors to the office suite I’m in are DEFINITELY not. I’m 4’11” and the badge reader is at my face level.

    Hmmm. [thinks hard about how to address this with the Powers That Be]

  19. Accounting for deafness certainly isn’t often included under “accessibility” concerns. And in many cases there’s totally outdated modes of thought. Take TTY’s. Do you know how many deaf people actually use these anymore in today’s age of computers, cellphones and instant messaging? And, even assuming you have a TTY, do you know how often it is that a TTY supplied number is actually answered by anyone (hint: almost never). And everyone, *everyone* assumes a telephone is a standard and universal form of contact. This issue is so pervasive, I hardly know where to begin to describe it. Not a day goes by that I’m not reminded of the inherent assumptions the hearing world makes.

  20. It’s not the same thing, peanutbutter, but at the moment my husband can’t talk on the phone because of a complication due to surgery. It’s become a huge drama – he can’t even confirm doctor appointments or order books from the library because everything’s by phone.

  21. @peanutbutter: Oh, gah, YES. I get that TTYs are outdated technology, but the sad thing is that up-to-date technology is often even cheaper! Almost everyone has access to e-mail and IM for free, and if something more secure is necessary, there are turnkey web-based solutions that are quite cheap.

    But no, people rarely list an e-mail address or an IM screen name or have any sort of web-based contact form. And then when you call via relay, they’ll often hang up thinking it’s a telemarketer or a scammer because nobody trained them about the only way some people will be able to contact them…

    (Auditory processing disorder here. I’m not technically deaf, but I can’t make out half of what’s being said on the phone due to the lack of audio fidelity.)

  22. I am so over the flashing lights everywhere. And by “over” i mean “i will break the next strobing fire alarm I see, and I will break the next person who pulls one because they think it’s funny”.

    And don’t get me started on the flashing bike lights. Or flashing lights to tell people that some *potentially inebriated* driver is coming out of a parking garage (you don;t want me to walk into traffic? then stop flashing lights in my face).

    Guh. And I will also probably break teh next person who calls me a whiner for pointing out that it’s an accessability issue.