hollymath: (Default)
[personal profile] hollymath
...I've got too much of a headache to write anything myself, but I wanted to highlight a couple of links I found again today, that say a lot of the things I would be saying.

What it's like to be legally blind does such a good job of describing the state between fully sighted and totally blind that is so little understood, so rarely expected by the sighted world to even exist at all.

"I don’t fit most people’s image of a blind person. I look at things."

I especially like the "there's no easy answer to 'what can you see?' " point, having recently realized this myself when an earlier blog entry about my partial-sightedness inspired that question, and I gave the kind of answer I'd been used to giving since childhood, that I see "pretty well" considering, and with examples of common things that help people know how to interact with me -- that I can see the face of someone having a normal conversation with me, that I can read normal print, and so on. But the more I thought about this answer, the less adequate I found it. I have good days and bad days. My eyes tire easily thanks to the nystagmus, and are susceptible to any tiredness, stress or illness I might have at the time. The environment I'm in can make a big difference to how well I can see -- is it crowded with stuff, what's moving and how fast? -- as can whether I'msomewhere I'm familiar with or not. Yes, part of that's cheating, I know I don't "really" look at a lot of things in my house or on my route to the bus stop I usually travel from...but also part of it's that when I know what's familiar it's easier to spot things that differ from what I'm expecting, and of course those are usually the ones more likely to be important for me to know about.

So, I think I've written about this before, but please don't ask a visually impaired person what we can see. I don't know what you can see, so if nothing else it's like being expected to answer a question in a language you don't even speak.

This is good, too:
I spend my life figuratively putting together the pieces of a jigsaw puzzle to get some visual semblance of my world. Have you ever tried to put together a jigsaw puzzle without having a picture of what you were putting together? That’s what every day is like for me, except I don’t even know if I have all the pieces.
The other link I think is so good is what a white cane really means. This too is written by a partially sighted woman who, like me, was well into her adult life before starting to use a cane. She went from finding no need for it, to using it when it was useful to her but getting confused looks when people also saw her do something like ride a bike or read a printed book, not understanding the special circumstances in which she put herself in order to do those things (following her husband on his bike or holding the book two inches from her nose or whatever), to carrying it all the time to avoid those comments, and then feeling annoyed by the ways in which it is inconvenient or cumbersome. I nodded along especially vehemently when she was talking about the internal debate on whether to take the cane on leaving the house:
At the same time, I try not to bow to social pressure and to only carry my cane when I truly need it physically or socially. But the repetitive conversations make that hard. There are many moments, when I stand by the front door struggling with myself. I'm not going anywhere with cars or I'm going to be with my husband every minute and I don't really need the cane to tell people I can't see in this circumstance. And yet I know I'll have to explain myself and the thought of the embarrassment makes me tend toward the cane. And the cane keeps me moving slow and cumbersome. I miss the days of freedom when I could have my hands free and move quickly without getting comments.
I remember hearing about this on an episode of In Touch, the Radio 4 show about blindness and blind people, in an episode that I happened to catch by the luckiest of chances because it seemed to be about someone in a position a lot like mine.

Here's a few minutes of this woman's interview, which I've just quickly transcribed. "I feel it actually disables me further. I'm quite able to get out and about on my own as long as I'm slow and careful. The last thing I need to do is tie up one hand with this stick which basically is not serving much practical purpose, it's just sending out a message to people around me." She says she has small children and wants/needs to hold their hand in public, and if you're carrying shopping, school bags, scooters, bus passes, "the last thing you need is to basically tie the other hand around your back. I need my hands!"

There's also the issue of not wanting to muddy the waters, not wanting to diminish the understanding that people who use white canes are "properly" blind, while also not wanting to be perceived as a fake for any sign that you're not completely sightless.
I've certainly heard horror stories of people who've been at bus stops and who've folded away their symbol cane to get on the bus and got on able to mount the steps without any problem and smile at the driver, and the people around them slightly suck their teeth. As in 'mm, you're faking it!'

At the same time, what I'm aware of when I'm out with my children without the white cane: my daughter said to me tearfully in a confessional sort of way she admitted that she sometimes finds it quite difficult being out with me without the white cane. Because she's aware of the people around me being unsure of why I'm hesitant at the top of stairs or why I'm slow in crowds or I might bump into people. I'm quite oblivious of their reactions, but she can see it because she's there with me, in some ways sort of helping me, and she says she finds this very distressing.

And I found this worrying, I found it sad for her, but at the same time I felt sorry for the people around us who are exasperated by me, because I think that people would like to have the chance to be supportive. I think if they understood more about the spectrum of visual impairment and about the different degrees, then people would step in and be much more helpful and patient.
And I think that too, actually: I think people would like to be more helpful and less exasperated, and that a lot of them would be if they knew, and I think I'd like to be less impatient and exasperated too. She didn't have an easy answer for another way to indicate partial sight, and I don't either.

I think that's because the solution to this is massive, industrial-scale public education about disability -- sight loss in particular but also disability in general, because this is basically the same problem that wheelchair users who ever stand, walk or ride bikes (what the hell is it with people thinking disabled people don't ever ride bikes?) get when someone thinks you can't possibly do any of those things and also benefit from a wheelchair. And that's way harder than I can sort out right now, because it's bedtime.

(no subject)

Date: 2016-05-02 09:23 am (UTC)
sashajwolf: photo of Blake with text: "reality is a dangerous concept" (Default)
From: [personal profile] sashajwolf
Thank you, this is useful.

In Germany, legally blind people often wear an armband with a special symbol on it, which seems to fulfill the function you're looking for. They may also carry a cane if they find it useful, but it's not the primary way of communicating their impairment. Obviously this relies on either the symbol being intuitive (the German one isn't, particularly - it's three black dots on a yellow background, and I gather the same one is used in some countries to indicate hearing impairments), or widespread education so that most people know what it means from a young age. I was taught about it in primary school.

(no subject)

Date: 2016-05-02 09:23 pm (UTC)
sashajwolf: photo of Blake with text: "reality is a dangerous concept" (Default)
From: [personal profile] sashajwolf
I think I'd guess that one, but of course it's hard to be sure now this conversation has primed me for it. If you do try the experiment, I'll be interested to hear the results!

Well...

Date: 2016-05-03 02:31 am (UTC)
ysabetwordsmith: Cartoon of me in Wordsmith persona (Default)
From: [personal profile] ysabetwordsmith
As a linguist, I'd bet the blocked-eye symbol would work without explanation; or at least you could make the explanation very quick and easy. It's an excellent choice because it is so intuitive. Humans can often understand symbols without an explanation -- it even works with languages that are highly representational. (Some somatic languages, such as Plains Indian Sign, were originally trade languages meant for when people didn't share a verbal language. They're more than pantomime, but they are also far more intuitive than verbal languages which are mostly abstract.) I think that an armband, or a button, would be convenient in many cases where a cane would not.

I have also seen hearing-impaired people with a button that says something like "I am deaf and I read lips." That tells me I need to make sure they can always see my face when I am speaking. It's convenient, effective, and discreet.

*ponder* Dark glasses work for indicating blindness, but that's best for total blindness or close to it. For people who have some usable vision, the lenses can reduce that.

I am now thinking it would be very handy to have some kind of indicator for variable disabilities, which many of them are. Partial vision, partial hearing, partial mobility. Fluctuating conditions where someone may be fine one day, flattened the next, and most of the time fairly functional as long as they don't overdo it. A general-purpose clue for "don't pester the person to push farther than they safely can."

Beyond the "don't be an asshole" admonishment that nobody seems to follow anymore. 0_o

Re: Well...

Date: 2016-05-03 05:20 pm (UTC)
ysabetwordsmith: Cartoon of me in Wordsmith persona (Default)
From: [personal profile] ysabetwordsmith
>>Yeah, a button seems like a good idea too. A friend of mine with chronic pain/fatigue issues has this sticker on her front door, which I love.<<

That's a good sticker. I have also seen ones that indicate things like "Chronic pain: do not touch" or "Left side of body is not working today." The former is pretty obvious at a glance. The latter belongs to a whole batch of labels for certain chronic illnesses where the symptoms change randomly, so that your support crew knows what's going on at the moment.

>> It's like the attempts by disabled people to update the wheelchair symbol to something that gives more activity and agency to the wheelchair user <<

It was one of my wheelchair-using friends who pointed out that the new active symbol privileges more-mobile wheelchair users over less-mobile ones. >_<

>> (I recently learned that the original version of this symbol didn't even give the wheelchair user a head! <<

There is not enough W in TF for that. But as a linguist, it immediately makes me wonder if there were other symbols from the same time period that lacked a head, or if that's the only one.

Re: Well...

Date: 2016-05-06 06:34 pm (UTC)
ysabetwordsmith: Cartoon of me in Wordsmith persona (Default)
From: [personal profile] ysabetwordsmith
>> Yeah, I've thought that too. I wonder if it's worth it anyway, though, since someone's always going to be disadvantaged by whatever the symbol depicts and our culture is so caught up on people being "bound" or "confined" to wheelchairs that I think we could do with a little more widespread understanding that more mobile people sometimes do use wheelchairs. But! I'm not a wheelchair user, so it's not my place to say, of course. <<

That's true. Since it was first brought to my attention by someone who's not an "athletic" wheelchair user like the one in the new picture, I consider the complaint valid. And I must admit, there's an ironic kind of ableism in making the general symbol of disability into a less-disabled version. 0_o I don't have a dog in this fight, but will back the ones who do.

>> I don't know, but but do know it was only designed in 1968. It seems like the idea was to depict the wheelchair rather than a person using it, anyway (the Wikipedia page for this symbol says this version "depicted an empty wheelchair"). <<

O_O That's just creepy.

(no subject)

Date: 2016-05-03 06:56 pm (UTC)
barakta: (Default)
From: [personal profile] barakta
That armband idea is very interesting, I have never heard of that before. Even if it's just "I have a disability which might mean I don't move/see/hear as well as expected" so people are less gittish.

We have a deaf symbol on the back of my trike cos I won't hear someone bell dinging or cycling up behind me - it's a bit small really but it's the best we could do with a mudguard sized space.

(no subject)

Date: 2016-05-02 11:51 am (UTC)
askygoneonfire: Red and orange sunset over Hove (Default)
From: [personal profile] askygoneonfire
I think a lot of this goes for deafness as well. So many depictions in media of deafness and blindness rely on those conditions being absolute and then people hit a wall when they encounter people in real life who don't stare 10cms above their head when they speak to them, or dance to music and ugh. I have a friend who usually contacts venues to arrange early entry to gigs, she sets herself up on the barrier to the side of the stage and can then see the entire gig properly - people then make snidey comments that's she's 'cheated' her way to the barrier etc. So many people see adjustments as unfair advantages and don't stop to consider why. I think you're spot on - it's only widescale education that is going to change this. More stories, more representations needed across media.

Thoughts

Date: 2016-05-03 02:40 am (UTC)
ysabetwordsmith: Cartoon of me in Wordsmith persona (Default)
From: [personal profile] ysabetwordsmith
I agree that we need more representation across the media.

I tend to write a spectrum, so for instance, I have characters without legs, characters with paralyzed legs, characters with partly-usable legs; all of whom use wheelchairs. I have characters who are totally blind, legally blind, vision-impaired, or need glasses but with them on have functional vision. I particularly like putting characters with the same trait together for comparison, to avoid the "all X are Y" problem common to mainstream media.

I've gotten a lot of my best ideas from fans who want to see more diversity so they ask me to write the stuff that isn't appearing. Sure, I can fix that. Which is how I came to have several series with disabled leads, like P.I.E. and Walking the Beat.

If anyone wants to see more representation, I highly recommend crowdfunding. You can pick current projects that you like and support them. You can fund your own work. You can watch for open prompt calls and request what you want to see more of. [community profile] crowdfunding is a place for creators and fans to find each other. Next up for me is my May 3 Poetry Fishbowl with a theme of "schooling vs. education." Feel free to drop by and ask for characters with disabilities.

Re: Thoughts

Date: 2016-05-03 05:37 pm (UTC)
ysabetwordsmith: Cartoon of me in Wordsmith persona (Default)
From: [personal profile] ysabetwordsmith
That's awesome! Immigrant perspectives are valuable too. It's something I've written occasionally, although not from direct personal experience in this lifetime.

(no subject)

Date: 2016-05-03 06:57 pm (UTC)
barakta: (Default)
From: [personal profile] barakta
The deafness one is all deafies are maaaagic and can lipread aaaanything... drives me pottier than the idea that we're all fluent signers when actually even signers have a range of fluencies for complex reasons.

(no subject)

Date: 2016-05-15 11:56 pm (UTC)
jesse_the_k: Well nourished white woman riding black Quantum 4400 powerchair off the right edge, chased by the word "powertool" (JK powertool)
From: [personal profile] jesse_the_k
It's ridiculous how much time we have to spend managing the reactions of normates (non-disabled) people. If it decreases the amount of hassle and boundary-policing they dump on us, then it's worth it. But still: talk about emotional labor!

The revised "universal access symbol" makes my blood boil -- I guess I'll have to write my own post about it.

(no subject)

Date: 2016-05-16 07:17 am (UTC)
From: (Anonymous)
I'm lucky I don't have to interact with strangers all that much these days, and the people I interact with are the ones who ask permission to help educate their children to understand that I am deaf and I need the child to speak clearly and face me.. But yes I quickly get annoyed when emotional labour is thrust upon me and one could argue I'm having to educate my employer at a rather senior level before suing them for disability discrimination.

What's the new universal access symbol? I Googled but wasn't sure which one of many it could be... I have clearly missed something... :)

(no subject)

Date: 2016-05-16 07:21 am (UTC)
barakta: (Default)
From: [personal profile] barakta
That anon is me. DW had logged me out without me noticing...

If you mean the athletic wheelchair symbol then yes I agree it's possibly worse than the original...

(no subject)

Date: 2016-05-17 12:06 am (UTC)
jesse_the_k: drawings of white hand in ASL handshapes W T F (WTF)
From: [personal profile] jesse_the_k
Oh! "Have to educate them before suing them" is the #1 frustrating situation.

I was referring to the "athletic wheelchair symbol," where the user is sitting forward, with arms in motion. It's been promoted by Sara Darden and the Accessible Icon Project

http://www.accessibleicon.org

I'm drafting that post about it, and I'll link back when it's done.

(no subject)

Date: 2016-05-02 07:56 am (UTC)
From: [identity profile] land-girl.livejournal.com
This was really interesting for me to read. My mother is legally blind, but being a small part of her condition, it isn't something I have given much thought to recently.

I think you are quite amazing.

Profile

hollymath: (Default)
Holly

August 2017

S M T W T F S
   1 2 34 5
6 7 89101112
13 141516 17 1819
20212223242526
2728293031  

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags