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01 May 2010 @ 01:50 am
Blogging Against Disableism Day  
Blogging Against Disablism Day, May 1st 2010

For this year's Blogging Against Disablism Day (roundups posted at Diary of a Goldfish as they occur), I'm doing a meme that jadelennox did recently: Five Accessibility Issues -- "Write down the first five accessibility issues you have as you go about your normal day, and your solutions, if any. The micro level stuff that you get around with duct tape and cussedness, I mean. The practical, every day stuff you don’t really think about anymore." I relate to that description pretty deeply except for not thinking about them anymore. Duct tape and cussedness notwithstanding, these trip me up too often not to be thinking about them anymore.

Primary correctable accessibility issues in my day
  • I wish there were more foreshortened carts at the grocery store. The big ones are prohibitively heavy, and recently I've had to stand there waiting for a light one to come back because they're all in use.

  • Speaking of standing up waiting for a cart -- I wish there were a bench or chair in the grocery store, for when I'm waiting for a light cart, or for when I have a cart and I'm mid-shop and my feet and back are burning. There's a bench downstairs/outside, and there are booths upstairs for patrons eating, but both of those are outside the registers; if I'm caught in terrible pain inside the store, I'm stuck standing up until I can check out.

  • In my building's laundry room, I need people to take their laundry out of the dryer soon after it's done rather than leaving it there for hours or days. What may be an annoyance to others is materially harmful to me. If I have to unload someone else's clothing in order to use the machine, that's a whole lot of extra arm and shoulder work smack in the middle of a task already full of arm and shoulder work. It's three steps: unload their clothing into the cart; unload their clothing from the cart onto the top of a washing machine (we have no table or other surface); and then, if I feel polite or fearful, loading their whole load back into a dryer after I use the dryer.

  • This one is cognitive. I might be breaking the meme's rules, but it's important to me: when we're inside a conversation, and I try to draw a parameter of the conversation because I'm getting lost, let me. That might sound obvious but it isn't. Sometimes a section of conversation is clearly tangential and also clearly (to me) beyond my scope. Say it's physics, or it's math, or it's a historical date that isn't critical to the point. I would love a way to (non-rudely) be able to convey that I can't understand that bit, "can we go back to the main thread?" With people who understand me well, this works, and even better, I can ask them whether I need to know that bit or not, and they say "you don't need to know that part," and we peacefully finish the main conversation. But most people see me not understanding and start to explain more -- as if I can learn science right then, as if telling me MORE will help my fog. This uses up so many mental spoons, I can't even explain it.

  • This fifth one might seems social, but to me it's cognitive, and it's a fairly big spoon suck: allow me the option to say "fine" to social how are yous without taking it as a grand pronouncement of improved health. Most people have that option -- the option to say "fine" without having other people read into it -- we don't assume that a conversational "fine" means "I have fine health on a generalized standard." But I find that as a chronically sick person, I am not allowed that option. I am expected to answer truthfully about my exact state of health. Sometimes I want to do that, but I want the choice -- I want the privacy option, or I might be too sick just then to really answer, or too busy. What happens on an almost daily basis is that I say "fine" because it's the wrong relationship or just the wrong moment for a long/real answer, but the person gets visibly excited and says "Oh, I'm so glad you're doing better! I'm so happy for you!" Knowing this pitfall in advance, I use up extra spoons deciding how to answer this tiny ubiquitous social question, this question that is rhetorical for other people but not for me; and when I say fine and the other person gets excited, I use up more spoons interacting with their misguided excitement and deciding whether to correct them.


So those are my five for the day. Three physical; two cognitive, and whether or not it makes sense to you, these two are not about fussiness or anything emotional, but are rather about the cognitive spoons that are, for me, in such short supply.

Please forgive typos or lack of clarity (though feel free to ask questions).
 
 
 
Astrid [wordpress.com] on May 1st, 2010 11:29 am (UTC)
Thanks for this. Isn't it interesting to see how frequently we run into tiny obstacles that hardly anyone even thinks about? And I agree about the "fine" thing: it should be clear it's conversational and generally doesn't mean a lot. Besides, if you went on to rant about your illness, that would be seen as rude anyway.
Rebecca Rabinowitz: House You Pass On the Waydiceytillerman on May 1st, 2010 03:29 pm (UTC)
Isn't it interesting to see how frequently we run into tiny obstacles that hardly anyone even thinks about?

Yes. I also I appreciate learning which obstacles other people run into that I have never thought about because of disabilities being so varied.

And I agree about the "fine" thing: it should be clear it's conversational and generally doesn't mean a lot. Besides, if you went on to rant about your illness, that would be seen as rude anyway.

Good point! I don't know why this has been happening lately. Or maybe I do -- it's because my health has been worse this year than people who know me are "accustomed to." But it still still doesn't quite make sense. I miss hearing "how are you" as a casual rhetorical hello. I just can't explain my health every moment of the day.
wheeliecatholic.blogspot.com on May 1st, 2010 01:49 pm (UTC)
BADD post
This is a really great post! I can relate to what you said about answering "fine" to questions and peoples' reactions. It's intrusive for people to assume that you (or I) have an obligation to give medical information. The "oh I'm glad you're fine" stuff (as if everything has all gone away) is so patronizing and can be hurtful as you're just trying to, as you say, maintain some privacy.

Boundaries, people, boundaries!
Rebecca Rabinowitz: House You Pass On the Waydiceytillerman on May 1st, 2010 03:30 pm (UTC)
Re: BADD post
Yes, boundaries!

I don't think it occurs to anyone that they're sort of robbing me of a standard conversational tool. It only occured to me very recently to frame it that way.
tokahfangtokahfang on June 14th, 2010 07:30 pm (UTC)
Re: BADD post
People ask me that all the time. I do answer honestly, which can be anywhere from "Great!" to "only functioning because of opiates". If I don't want to talk about it, I say "I'm here," and they generally get the point. The rub comes when I answer positively. I have some really rocking days, and the powerchair does not make that any less true. But then too many say "So you're getting better?" and then I have to explain that my disease is incurable and progressive. Getting better is not an option, that would be a miracle. Then they invariably get depressed, and seem like they are expecting me to be too, and of course I am still having the great day that started the conversation.
Rebecca Rabinowitzdiceytillerman on June 17th, 2010 07:27 am (UTC)
Re: BADD post
Thanks for this comment. Yep. People are very quick to want to hear that we're getting better.
sarahsbooks on May 1st, 2010 02:25 pm (UTC)
Tangent!

About spoons: I love the concept and occasionally find myself thinking in terms of spoons as shorthand for my own mental and physical energy levels. BUT. I sense a taboo against using the spoon metaphor outside of my own head to describe myself when I feel too drained or worn out to do something I'd normally do (as is happening a lot these last few days) because I have a notion that spoon-talk doesn't belong to me since I'm not chronically ill. Is that a correct assumption? (Did I manage to make that make sense?)
Rebecca Rabinowitz: House You Pass On the Waydiceytillerman on May 1st, 2010 03:43 pm (UTC)
You're right, there is a taboo, and it's a crucial one, and I support it: the concept of spoons is specifically and only for people with disabilities.

I can't answer this question for you personally, but here's what I would say to anyone: please don't think of yourself in terms of spoons unless you consider yourself to be a person with a disability. However, the disability needn't be a chronic illness, and it needn't be physical; it can be cognitive, or psych, or emotional, or any type of disability (as well, of course, as any kind of disability that involves more than one axis; and those axes are sometimes blurry). It's perfectly valid for a person with, say, OCD and no other disabilities to use the spoon concept; or clinical depression, or a panic disorder, or dyslexia. It doesn't have to be a condition that the person considers or calls an "illness"; it does have to be something that the person considers a disability.

I hope that makes sense. :)
sarahsbooks on May 1st, 2010 05:54 pm (UTC)
This is a helpful distinction. It hadn't occurred to me that anxiety disorders would be eligible for spoons, but now that I think about it, ZOMG, of course. Panic is a spoon-vortex, and people who experience, say, *normal* stage fright, just don't understand what it takes out of me. Hence the it'll-get-better-with-practice trope. And nevermind what a certain handful of trivial yet triggery tasks require. It further makes sense that it wouldn't be kosher for me to say This funeral is using up a lot of spoons. Funerals are no picnic for ANYBODY.
Rebecca Rabinowitz: Orphea Prouddiceytillerman on May 1st, 2010 07:07 pm (UTC)
Anxiety disorders are totally relevant to spoons.

It further makes sense that it wouldn't be kosher for me to say This funeral is using up a lot of spoons. Funerals are no picnic for ANYBODY.

Well, but no: it's not about whether an event or situation would also be hard for TABs, it's about the person in the event or situation, and whether it's hard for them in ways specifically related to their disabiilty.
sarahsbooks on May 3rd, 2010 02:35 pm (UTC)
I *think* my discomfort the last couple days has been run of the mill, but the lines blur when I'm dealing with something that's universally regarded as unpleasant. I'm so accustomed to being panic-oriented that it's hard to tell if the disorder is exacerbating how I feel, or if my reaction is in fact "normal."
ex_gnomicut on May 3rd, 2010 01:28 pm (UTC)
It's a distinction that I have to keep in mind in my own head, as well. I get so used to the mental exhaustion of coping with disability that sometimes I want to say, for example, "wow, remembering to use boiled water to brush my teeth is using up a lot of spoons," because the type of mental exhaustion feels similar to the mental exhaustion I get when I have used up my resources coping with disability. But it's different, and I need to remember it's different. The fact is, everyone gets exhausted remembering to use boiled water to brush their teeth, but diceytillerman, if she lived in the boil water zone, would have a whole different level of problem coping with it. (Whereas I am using up spoons lifting teapots of boiled water to pour over my hands, because that is actually based in disability.)
Rebecca Rabinowitzdiceytillerman on May 8th, 2010 03:28 am (UTC)
Very clearly said. :)
brilliantmindbrokenbody.wordpress.com on May 5th, 2010 05:32 am (UTC)
If you are getting worn out in a way that relates to your disability, then yes, you absolutely can count it in terms of spoons. For example, if it pushes you closer to a panic attack.

For example - we can all agree that cleaning up dog poop is no pleasure cruise. For me, bending down is particularly bad, so I consider it a real spoon-sucker. The fact that no one likes it has no relation to whether it uses a lot of my spoons. My doing it negatively impacts my ability to walk or pick things up later.

I hope that makes sense.

~Kali
www.brilliantmindbrokenbody.wordpress.com
Rebecca Rabinowitz: Orphea Prouddiceytillerman on May 8th, 2010 03:28 am (UTC)
Well said.
ext_99059 on May 1st, 2010 11:18 pm (UTC)
Oh gosh yes. Both for the carts -- I hate having to push a cart around a supermarket and usually end up taking one of the ones designed for kids..... AND for the whole "fine is not = improvement." That would make such a difference to my life.

WCD
Rebecca Rabinowitz: House You Pass On the Waydiceytillerman on May 2nd, 2010 12:58 am (UTC)
Thanks for reading! The "fine" phenomenon is so strange and draining.

As for the supermarket carts, I so heartily wish they would stock in more of the small kind -- clearly they're popular.
ex_gnomicut on May 3rd, 2010 01:29 pm (UTC)
Dicey, WCD reads your blog. o_O
ex_writingh on May 2nd, 2010 04:15 am (UTC)
Thanks for this post. I appreciate all of these; I particularly relate to the need to more places to sit down inside, say, grocery stores and the like. During these past couple years what used to be just foot pain in one foot seems to have turned into early-onset arthritis in many joints, and some days my foot/hip pain is very bad. I just move slower and slower during shopping, and the whole experience just drags on and on. It's much easier when I have my husband with me to handle the cart and otherwise help out, but if I'm on my own, it can take me a very long time.

My experience with "How are you?" was a different one. When I was clinically depressed and in a particularly bad emotional place, I found I had lost the ability to answer the routine rhetorical question with the correct social nicety "I'm fine," since I wasn't. I found myself spilling my guts about how not-fine I was to near-strangers routinely. That wasn't an accessibility issue, though -- it wasn't a question of society doing wrong by me. (I mean, sometimes people didn't handle it very well, but people weren't doing anything wrong in asking me "How are you?") It was me being sick, and it sucked. Bleah. Glad that episode in my life has passed -- for now, anyway.
ex_writingh on May 2nd, 2010 04:25 am (UTC)
on "helping out"
...I recently realized how much the language of "husbands helping out" implies this construction of wives' proper tasks. (The task of grocery shopping, in the case of my comment, although it first came to my attention in the construction of husbands who "help out with the kids," thus implying that raising kids is, of course, the proper task of wives.) At least in the case of me and my husband doing grocery shopping together, it would be closer to the truth to frame it as me helping him out. And it would be most accurate to describe it as a chore we share pretty equally. :) Sorry if I'm overthinking this: it's just that the language I had used jumped out at me, in a bad way, when I reread my comment.
Rebecca Rabinowitz: House You Pass On the Waydiceytillerman on May 3rd, 2010 04:31 am (UTC)
Re: on "helping out"
I hadn't read your comment that way ("husband helping out" = wives' proper tasks) but I appreciate the clarification anyway. I have the same reaction you do when I hear about dads "babysitting" their own kids.
Underwear Ninja: tubetop of justicechavvah on May 2nd, 2010 09:49 pm (UTC)
I also wish there were more benches around, just generally. I would also appreciate less shaming from folks who feel they are more entitled to said benches than I am (e.g. elderly people). Just because a person is young doesn't mean they are able-bodied, and just because I can move around when I have to doesn't mean it doesn't cost me dearly, especially some days.

Also, a big yes to "I'm fine." My current boss is really, really great at navigating this. My previous boss wasn't.
Rebecca Rabinowitz: Rodzinadiceytillerman on May 3rd, 2010 04:33 am (UTC)
I would also appreciate less shaming from folks who feel they are more entitled to said benches than I am

Ah yes. One of the big pitfalls of invisible disabilities. For sure.
(Deleted comment)
Rebecca Rabinowitzdiceytillerman on May 8th, 2010 03:27 am (UTC)
Yes, explanations require a lot of spoons. Oh yes. Even more if the person needs convincing as well as explanation.
ex_gnomicut on May 3rd, 2010 01:13 pm (UTC)
Oh, I'm glad to know your penultimate cognitive one. I think I screw that one up with you all the time. I will try to keep it in mind.

And WORD on the last one. I got into that one with somebody just yesterday, where the conversation for the curious (well-meaning!) person who wanted to understand my limits was using up resources I didn't have because of my limits.
Rebecca Rabinowitzdiceytillerman on May 3rd, 2010 10:10 pm (UTC)
Oh, I'm glad to know your penultimate cognitive one. I think I screw that one up with you all the time. I will try to keep it in mind.

Actually you're much better at this than a lot of people are! Part of it is me learning how to say it -- and being bold enough to say it. Hey, might you be willing to help me ponder what kind of phrasing works best, and whether the phrasing should be different in different contexts?
brilliantmindbrokenbody.wordpress.com on May 5th, 2010 05:35 am (UTC)
With regards to the 'fine' issue, my usual answer (when I want to convey that I'm not fine, but not having serious problems) is 'the usual' - then people know that I'm still sore, tired, and overwhelmed, but it's nothing out of the ordinary.

I also shrug and say, "Been better.'

Both of those, I end with asking how they're doing, which helps avoid talking about how I'm doing any more than that. So it's 'The usual. You?'
Rebecca Rabinowitz: Orphea Prouddiceytillerman on May 5th, 2010 05:43 am (UTC)
Good ideas. Thank you.
(Anonymous) on May 6th, 2010 01:37 am (UTC)
More seating!
Yes, I wish people would have more seating ANY where people spend a lot of time standing -- not only in grocery stores. Most of the time I don't need it that much, but because I have a bad foot that has been injured and re-injured many times, I have spent weeks on end when I did need to be careful about how long I stand up without a break for my foot.

The trouble is, if you simply put a few seats out in grocery stores or whatever, probably most of the time the people who sat there would be ordinary people who just feel like sitting down. Then people who NEED those seats would have to convince them that they need it more.
Rebecca Rabinowitzdiceytillerman on May 6th, 2010 02:05 am (UTC)
Re: More seating!
The trouble is, if you simply put a few seats out in grocery stores or whatever, probably most of the time the people who sat there would be ordinary people who just feel like sitting down. Then people who NEED those seats would have to convince them that they need it more.

Ohhh, I hadn't thought of that. Maybe the placement could be such that most people wouldn't sit there -- a place that's not for "hanging out"?? and is clearly only for a need? But you're right, that's a pitfall.
ex_writingh on May 10th, 2010 05:02 am (UTC)
Re: More seating!
Why would "ordinary people" just "feel like" sitting down in the middle of a grocery store? It's not such a fun place to hang out. If people are stopping in the middle of their shopping trip to sit down, I'd guess they probably *do* NEED to. I don't mean to sound hostile here; I'm genuinely confused as to why this would be a problem. If a grocery store put seats in and they tended to fill up, my reaction would be that they should put in even more seats -- not try to make people not sit in them. It seems like this would tie into the problem of invisible disabilities/shaming, too. How could anyone tell who "needs" the seats and who doesn't? Whose job would it be to judge?
lounalunelounalune on May 31st, 2010 09:12 pm (UTC)
Re: More seating!
Actually, I know a large supermarket that has a bench towards the middle (and it also has scooters!) Though it's great for these things, it's not in my area and quite a walk from the bus station, so I've only been there a few times. Still, I used this bench everytime I went there, and never had trouble getting a seat. Most of the time I was on my own, and once an elderly lady sat down for a while. I think people who don't need it don't get the impulse of wanting to sit down in the middle of a supermarket.