The Nystagmus Tag
Dec. 14th, 2017 09:07 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
cosmolinguistI saw somebody retweet this blog post, which has some interesting questions about nystagmus. Nystagmus is one of the eye conditions I have, it's the one that makes my eyes jump back and forth so even before I had glasses or pointless and counterproductive accommodations in grade school, people could tell just from looking at me that there's something wrong with my eyes.
No one ever explained anything about this, or my other eye conditions to me. I only know what they're called because I was a nerdy kid who remembered long words I overheard or saw written down once. So my explanations of it aren't going to be any better than you can get on Wikipedia, but I can certainly talk about what it's like to have it.
1. Are you the only one in your family to have nystagmus?
Yes but I think this question is asking if there's a genetic component to my eye conditions, and I can't know if anyone I'm biologically related to has it, because I'm adopted and had next to no information about my birth parents and none at all about any other family members.
2. How has your nystagmus affected you throughout your life so far?
Since it's the thing that's both obvious and unavoidable about my eye coinditions, it got me bullied for as long as I can remember. In that Stockholm syndrome way, I was relieved when some kids thought was interesting or "cool" just because that made such a change, but this was just a different kind of unwanted attention and it started out with the same kinds of questions that the bullying started with so I was on high alert. I didn't even realize how exhausting this was at the time. It was just my "normal."
For someone relatively sighted and brought up constantly encouraged to fit in and be normal, nystagmus was always the traitor giving me away. I hated it for that.
It's also a barometer for other people of how I'm doing: if I'm tired or if I'm coming down with a cold or whatever, it was obvious to my parents and now it is to Andrew because my eyes move more quickly. Since I don't know they're moving (I have congenital nystagmus so my brain always compensates (this is apparently not the case for people who acquire nystagmus later in life) ), I again have felt at times like my eyes are against me, telling other people things I'm not always necessarily aware of or things I wish I could be better at hiding.
As for how it actually affects my vision, nystagmus seems to be the reason my sight is so variable. I will talk about having a "good eye day" or "my eyes aren't working today," and this is what I mean. A bad day means my eyes are sore, it's harder to focus, and I get headaches. A good day means I can read a bit smaller print or make out detail a bit further away than I tend to expect -- sometimes I even surprise myself slightly with that!
I call them "days" but a good or bad period doesn't necessarily last all day and can last for longer than a day. And many actual calendar days don't feel particularly good or bad. The bad ones are more noticeable, of course, because I've arranged my life such that I never depend on and rarely ask my vision to be at the top of its game. Maybe a "good day" is less obvious or not used to its fill advantage, but that's totally worth it if it makes the bad days less likely or less bad.
The variations aren't huge (in visual acuity, I mean; obviously they're huge in terms of pain and functionality) but they can make enough difference that once I got new glasses whose prescription was too strong prescription because I must've been tested for them on a "bad day." (Nystagmus is apparently worsened by stress so it's amazing I've ever gotten any decent prescriptions, considering how traumatic I found eye doctors, especially as a kid.) I never adjusted to them and eventually had to have a new eye test and new glasses -- must've cost my poor parents so much more money!
3. What are you registered as – partially sighted, severely sight impaired, blind, etc?
I'm registered severely sight impaired, meaning I have the same legal status as someone who can't see anything at all. Which feels really weird to me? I was shocked when the registration came through and said that. Andrew was totally unsurprised -- "you really can't see very well at all, love" -- but honestly I can see better than any other visually impaired person I know. And things like that register (which is just about visual acuity and visual field) don't take into account the variability which is actually so disabling to me: not being able to not being able to rely on something being possible today just because I did it yesterday, or being able to do something like take a test where I need a certain amount of "good eyes"-ness at a certain time and for a certain length of time which are totally outside my control.
People in the UK aren't registered blind (or partially sighted) any more: they're registered severely sight impaired or sight impaired, respectively. While I am officially "severely sight impaired" I call myself partially sighted because that seems more accurate and gives people who meet me a better idea of what I'm dealing with and what they can expect from me.
4. Do you have any other eye conditions with your nystagmus?
Nystagmus is usually present with other conditions, it's what the RNIB calls "a problem with the pathways that connect the eyes to the parts of the brain that analyse vision. These parts of the brain deal with eye movement." Those pathways from the eyes to the brain are the optic nerves, and mine didn't form properly. My eye condition is called optic nerve hypoplasia, which means the optic nerves are too small/thin. So my eyes themselves aren't damaged or faulty even though that's the experience of a lot of people with sight loss. The signals my eyes try to send to my brain just aren't able to get there like they should.
I couldn't see at all when I was born, and it's my understanding that this is because my brain was basically going "what even is this shit I'm getting from you, eyeballs" and took a while to figure out how to make any sense of it at all. But I've had this level of sight since I was about a year old (or maybe less, my parents are vague on this) so I don't remember not being able to see, and I have never been able to see any better than I do now.
For all my mom's constant fretting (she also thinks I'm more likely to get other eye problems, when my risk of something like glaucoma is no different than anybody else of my demographic), my eye condition is really stable. I feel quite lucky in this, because I've never known any different and I don't have to worry about it getting any worse (except my eyes will get worse with age like anybody's), which again is not an experience shared by lots of people with sight loss.
5. Do you have any visual aids to help you with your condition?
Magnifying doesn't work super-well for me, though this is something I spent my childhood failing to convince people of. My eye condition has basically the same effect on me as being incredibly short-sighted so people expect me to have coke-bottle glasses or carry a magnifying glass around but...
I mean yeah, it's sorta easier to read bigger print, but I find it doesn't make me able to read for longer or to get less tired or anything. Large print has its own tiring things that go along with it, like how often you have to flip pages and how hard it is to keep a thought in your head as you're reading if you can't occasionally look back a few lines to remind yourself.
I do need/benefit from larger text on the computer but a lot of basic websites for things like Gmail or social media are increasingly terrible at rendering properly when you bump up the font size. Andrew had a problem trying to make a payment from online banking recently where when he complained he got told "oh yeah, the all-important 'confirm payment' [or whatever it was] button disappears if your font size is increased." They know about it and they don't care. He found it ironic that he had this problem while trying to make a payment for my DSA, for something that I get because I'm disabled in ways that make it a lot easier for him to do the online banking in the first place.
The vast majority of the "vision aids" I use aren't things people would normally think of as such (most I only recently realized are vision aids myself). Like, Andrew is my biggest vision aid. He grabs my hand if we're walking in the dark, asks if I'm okay when there are stairs, patiently gives me precise directions towards the toilets if we're out somewhere that I don't know where they are, tells me things I'll miss when we watch a TV show, reads information he thinks I'll find interesting off displays in museums. He's known me for long enough that he has at least as good an idea as I do of what kind of help I'm likely to need (he knows he doesn't need to say "there are stairs" when we get to the stairs but he says "You okay, love?" knowing that I will know he means "on the stairs" and that sometimes I'll say yes and sometimes want a hand). Really granular, well-tailored help like that is such a luxury.
Anyway! My pocketwatch on a necklace chain is a vision aid. My Audible subscription is a huge vision aid. Tidiness is, too! Not walking on stuff on the floor or unexpectedly swiping something off the kitchen counter when I reach for the faucet would help a lot. Keeping things in the same place so I don't have to look for them, I can just know where they are. Following people when they're walking so I can see where/how they go and thus if there's puddles to step around, any curbs, things like that.
People keep wanting to give me gadgets and things that talk, but these kind of "life hacks" aid my vision a lot more. I am realizing I have a lot of them, but since they all developed subconsciously throughout my life I didn't even notice a lot of the until I started paying attention a few years ago.
6. Do you have any advice for parents of children with nystagmus?
Watch out for the bullying.
Be patient with the variability: the kid really will be able to do stuff one day that they can't the next. So it's not necessarily laziness or avoidance (though of course any kid can have those too! I'm still not good at telling the difference between them in myself).
I think my headaches and whatnot were viewed with a lot of suspicion when I was in school. I don't blame my parents for that because they can't have been given much information about my eye conditions beyond the medical basics. They were still years away from internet access (and they're not people to go looking up things like this on the internet anyway) and my condition was always framed by doctors in a sciencey, numbersy kind of way: it was about my body's deficiency and the interesting medical example I provided, not about the impact it had on my day-to-day life. My mom took me to separate specialists because she was worried about all the headaches at one point, and none of those fuckers went "huh, maybe it's this problem with visual processing she's had all her life and now she's in middle school and high school the demands are getting a lot greater. I think they just blamed the headaches on puberty. You know, girls, hormones, that whole weird thing.
But I can save my bitterness about how poorly the medical establishment served me for another day, because this is already getting long! My point is that parents can definitely prepare themselves better now, which I think is great.
And I do hope they listen to their kids better than I was listened to. A lot of my traumatic associations with eye doctors of all kinds are that no one ever explained things to me, no one asked me questions. For some reason when I was about 12 I was taken to a different hospital once, and there they realized a mistake had been made on my records, which had apparently always said I see better out of my left eye than my right. They did tests to find out it was the other way around, but I could've told anybody who'd asked in the intervening however-many years it'd been since I mastered the difference between left and right! I didn't know it was wrong on my records either, of course, because nobody ever showed me or talked to me about them.
I know kids can't understand everything but I think parents should still listen to them as much as possible, trust them, and try to find age-appropriate explanations for their conditions and treatment.
7. Describe your vision in 3 words.
Tiring, but appreciated!
8. What help did you get in school/work?
I don't think I had any useful help in grade school (except my second-grade teacher sometimes giving me a written copy of what she'd put on the blackboard), just a lot of stuff foisted on me that I didn't want: writing with pens instead of pencils because people who didn't ask me found it easier. Got all my textbooks on tape in middle school, back when that needed a special player and everything, and literally never touched them. My first time at university, another kid was paid to photocopy their notes for me in a couple of my classes. When I mentioned that to the disability advisor I saw at Manchester, the look she gave is probably what people mean by withering.
And I never had any help at all in any sort of job, except my hospital job occasionally letting me go home early if my vision was really badly affected.
Now I'm back in uni, things couldn't be more different. I'm getting a bunch of proprietary software for things like screen reading and magnification now that I'm a student. My new laptop should be here on Friday, the very last day of the semester. I haven't used it before because the technology is just catching up with the variability and non-standard nature of my access needs and because if you have to pay for it yourself it's bloody expensive, but I've tested this stuff out and some of it's really exciting. More updates about this soon, no doubt.
I'm also getting a camera that can OCR whole pages of text in a couple of seconds and read it out to me, a little handheld thing that lets me zoom in on and take pictures of things, and a bunch of other software like Dragon.
I had extra time for my Arabic exam yesterday, and I needed it. My teacher photocopied the test onto A3 paper for me too (bigger text helps me a lot more in Arabic, I don't know why, but my teacher thinks this makes sense because she says when she was learning Hebrew she felt dyslexic and benefited from magnification to overcome it). I get an extra week for all my deadlines and that's been really helpful too. I felt like a fraud when the disability advisor put these things in my support plan like just as a matter of course (the I'm not that disabled! voice in the back of my head will never shut up) but I've been so grateful for them.
The one essay I have left to do this semester is on something I don't understand very well and I missed the seminar that talked most about it so I was stressing today. But it's something Andrew is interested in too so I showed him the readings I need to get citations from. There were four or them and I'd spent hours (over a few weeks!) reading them all; he took like ten minutes. Admittedly he's especially good at skim-reading and extracting information quickly from what he reads, but also it made me feel a little more like I deserved the extra time I get!
No one ever explained anything about this, or my other eye conditions to me. I only know what they're called because I was a nerdy kid who remembered long words I overheard or saw written down once. So my explanations of it aren't going to be any better than you can get on Wikipedia, but I can certainly talk about what it's like to have it.
1. Are you the only one in your family to have nystagmus?
Yes but I think this question is asking if there's a genetic component to my eye conditions, and I can't know if anyone I'm biologically related to has it, because I'm adopted and had next to no information about my birth parents and none at all about any other family members.
2. How has your nystagmus affected you throughout your life so far?
Since it's the thing that's both obvious and unavoidable about my eye coinditions, it got me bullied for as long as I can remember. In that Stockholm syndrome way, I was relieved when some kids thought was interesting or "cool" just because that made such a change, but this was just a different kind of unwanted attention and it started out with the same kinds of questions that the bullying started with so I was on high alert. I didn't even realize how exhausting this was at the time. It was just my "normal."
For someone relatively sighted and brought up constantly encouraged to fit in and be normal, nystagmus was always the traitor giving me away. I hated it for that.
It's also a barometer for other people of how I'm doing: if I'm tired or if I'm coming down with a cold or whatever, it was obvious to my parents and now it is to Andrew because my eyes move more quickly. Since I don't know they're moving (I have congenital nystagmus so my brain always compensates (this is apparently not the case for people who acquire nystagmus later in life) ), I again have felt at times like my eyes are against me, telling other people things I'm not always necessarily aware of or things I wish I could be better at hiding.
As for how it actually affects my vision, nystagmus seems to be the reason my sight is so variable. I will talk about having a "good eye day" or "my eyes aren't working today," and this is what I mean. A bad day means my eyes are sore, it's harder to focus, and I get headaches. A good day means I can read a bit smaller print or make out detail a bit further away than I tend to expect -- sometimes I even surprise myself slightly with that!
I call them "days" but a good or bad period doesn't necessarily last all day and can last for longer than a day. And many actual calendar days don't feel particularly good or bad. The bad ones are more noticeable, of course, because I've arranged my life such that I never depend on and rarely ask my vision to be at the top of its game. Maybe a "good day" is less obvious or not used to its fill advantage, but that's totally worth it if it makes the bad days less likely or less bad.
The variations aren't huge (in visual acuity, I mean; obviously they're huge in terms of pain and functionality) but they can make enough difference that once I got new glasses whose prescription was too strong prescription because I must've been tested for them on a "bad day." (Nystagmus is apparently worsened by stress so it's amazing I've ever gotten any decent prescriptions, considering how traumatic I found eye doctors, especially as a kid.) I never adjusted to them and eventually had to have a new eye test and new glasses -- must've cost my poor parents so much more money!
3. What are you registered as – partially sighted, severely sight impaired, blind, etc?
I'm registered severely sight impaired, meaning I have the same legal status as someone who can't see anything at all. Which feels really weird to me? I was shocked when the registration came through and said that. Andrew was totally unsurprised -- "you really can't see very well at all, love" -- but honestly I can see better than any other visually impaired person I know. And things like that register (which is just about visual acuity and visual field) don't take into account the variability which is actually so disabling to me: not being able to not being able to rely on something being possible today just because I did it yesterday, or being able to do something like take a test where I need a certain amount of "good eyes"-ness at a certain time and for a certain length of time which are totally outside my control.
People in the UK aren't registered blind (or partially sighted) any more: they're registered severely sight impaired or sight impaired, respectively. While I am officially "severely sight impaired" I call myself partially sighted because that seems more accurate and gives people who meet me a better idea of what I'm dealing with and what they can expect from me.
4. Do you have any other eye conditions with your nystagmus?
Nystagmus is usually present with other conditions, it's what the RNIB calls "a problem with the pathways that connect the eyes to the parts of the brain that analyse vision. These parts of the brain deal with eye movement." Those pathways from the eyes to the brain are the optic nerves, and mine didn't form properly. My eye condition is called optic nerve hypoplasia, which means the optic nerves are too small/thin. So my eyes themselves aren't damaged or faulty even though that's the experience of a lot of people with sight loss. The signals my eyes try to send to my brain just aren't able to get there like they should.
I couldn't see at all when I was born, and it's my understanding that this is because my brain was basically going "what even is this shit I'm getting from you, eyeballs" and took a while to figure out how to make any sense of it at all. But I've had this level of sight since I was about a year old (or maybe less, my parents are vague on this) so I don't remember not being able to see, and I have never been able to see any better than I do now.
For all my mom's constant fretting (she also thinks I'm more likely to get other eye problems, when my risk of something like glaucoma is no different than anybody else of my demographic), my eye condition is really stable. I feel quite lucky in this, because I've never known any different and I don't have to worry about it getting any worse (except my eyes will get worse with age like anybody's), which again is not an experience shared by lots of people with sight loss.
5. Do you have any visual aids to help you with your condition?
Magnifying doesn't work super-well for me, though this is something I spent my childhood failing to convince people of. My eye condition has basically the same effect on me as being incredibly short-sighted so people expect me to have coke-bottle glasses or carry a magnifying glass around but...
I mean yeah, it's sorta easier to read bigger print, but I find it doesn't make me able to read for longer or to get less tired or anything. Large print has its own tiring things that go along with it, like how often you have to flip pages and how hard it is to keep a thought in your head as you're reading if you can't occasionally look back a few lines to remind yourself.
I do need/benefit from larger text on the computer but a lot of basic websites for things like Gmail or social media are increasingly terrible at rendering properly when you bump up the font size. Andrew had a problem trying to make a payment from online banking recently where when he complained he got told "oh yeah, the all-important 'confirm payment' [or whatever it was] button disappears if your font size is increased." They know about it and they don't care. He found it ironic that he had this problem while trying to make a payment for my DSA, for something that I get because I'm disabled in ways that make it a lot easier for him to do the online banking in the first place.
The vast majority of the "vision aids" I use aren't things people would normally think of as such (most I only recently realized are vision aids myself). Like, Andrew is my biggest vision aid. He grabs my hand if we're walking in the dark, asks if I'm okay when there are stairs, patiently gives me precise directions towards the toilets if we're out somewhere that I don't know where they are, tells me things I'll miss when we watch a TV show, reads information he thinks I'll find interesting off displays in museums. He's known me for long enough that he has at least as good an idea as I do of what kind of help I'm likely to need (he knows he doesn't need to say "there are stairs" when we get to the stairs but he says "You okay, love?" knowing that I will know he means "on the stairs" and that sometimes I'll say yes and sometimes want a hand). Really granular, well-tailored help like that is such a luxury.
Anyway! My pocketwatch on a necklace chain is a vision aid. My Audible subscription is a huge vision aid. Tidiness is, too! Not walking on stuff on the floor or unexpectedly swiping something off the kitchen counter when I reach for the faucet would help a lot. Keeping things in the same place so I don't have to look for them, I can just know where they are. Following people when they're walking so I can see where/how they go and thus if there's puddles to step around, any curbs, things like that.
People keep wanting to give me gadgets and things that talk, but these kind of "life hacks" aid my vision a lot more. I am realizing I have a lot of them, but since they all developed subconsciously throughout my life I didn't even notice a lot of the until I started paying attention a few years ago.
6. Do you have any advice for parents of children with nystagmus?
Watch out for the bullying.
Be patient with the variability: the kid really will be able to do stuff one day that they can't the next. So it's not necessarily laziness or avoidance (though of course any kid can have those too! I'm still not good at telling the difference between them in myself).
I think my headaches and whatnot were viewed with a lot of suspicion when I was in school. I don't blame my parents for that because they can't have been given much information about my eye conditions beyond the medical basics. They were still years away from internet access (and they're not people to go looking up things like this on the internet anyway) and my condition was always framed by doctors in a sciencey, numbersy kind of way: it was about my body's deficiency and the interesting medical example I provided, not about the impact it had on my day-to-day life. My mom took me to separate specialists because she was worried about all the headaches at one point, and none of those fuckers went "huh, maybe it's this problem with visual processing she's had all her life and now she's in middle school and high school the demands are getting a lot greater. I think they just blamed the headaches on puberty. You know, girls, hormones, that whole weird thing.
But I can save my bitterness about how poorly the medical establishment served me for another day, because this is already getting long! My point is that parents can definitely prepare themselves better now, which I think is great.
And I do hope they listen to their kids better than I was listened to. A lot of my traumatic associations with eye doctors of all kinds are that no one ever explained things to me, no one asked me questions. For some reason when I was about 12 I was taken to a different hospital once, and there they realized a mistake had been made on my records, which had apparently always said I see better out of my left eye than my right. They did tests to find out it was the other way around, but I could've told anybody who'd asked in the intervening however-many years it'd been since I mastered the difference between left and right! I didn't know it was wrong on my records either, of course, because nobody ever showed me or talked to me about them.
I know kids can't understand everything but I think parents should still listen to them as much as possible, trust them, and try to find age-appropriate explanations for their conditions and treatment.
7. Describe your vision in 3 words.
Tiring, but appreciated!
8. What help did you get in school/work?
I don't think I had any useful help in grade school (except my second-grade teacher sometimes giving me a written copy of what she'd put on the blackboard), just a lot of stuff foisted on me that I didn't want: writing with pens instead of pencils because people who didn't ask me found it easier. Got all my textbooks on tape in middle school, back when that needed a special player and everything, and literally never touched them. My first time at university, another kid was paid to photocopy their notes for me in a couple of my classes. When I mentioned that to the disability advisor I saw at Manchester, the look she gave is probably what people mean by withering.
And I never had any help at all in any sort of job, except my hospital job occasionally letting me go home early if my vision was really badly affected.
Now I'm back in uni, things couldn't be more different. I'm getting a bunch of proprietary software for things like screen reading and magnification now that I'm a student. My new laptop should be here on Friday, the very last day of the semester. I haven't used it before because the technology is just catching up with the variability and non-standard nature of my access needs and because if you have to pay for it yourself it's bloody expensive, but I've tested this stuff out and some of it's really exciting. More updates about this soon, no doubt.
I'm also getting a camera that can OCR whole pages of text in a couple of seconds and read it out to me, a little handheld thing that lets me zoom in on and take pictures of things, and a bunch of other software like Dragon.
I had extra time for my Arabic exam yesterday, and I needed it. My teacher photocopied the test onto A3 paper for me too (bigger text helps me a lot more in Arabic, I don't know why, but my teacher thinks this makes sense because she says when she was learning Hebrew she felt dyslexic and benefited from magnification to overcome it). I get an extra week for all my deadlines and that's been really helpful too. I felt like a fraud when the disability advisor put these things in my support plan like just as a matter of course (the I'm not that disabled! voice in the back of my head will never shut up) but I've been so grateful for them.
The one essay I have left to do this semester is on something I don't understand very well and I missed the seminar that talked most about it so I was stressing today. But it's something Andrew is interested in too so I showed him the readings I need to get citations from. There were four or them and I'd spent hours (over a few weeks!) reading them all; he took like ten minutes. Admittedly he's especially good at skim-reading and extracting information quickly from what he reads, but also it made me feel a little more like I deserved the extra time I get!
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Date: 2017-12-14 11:38 am (UTC)Hopefully support in schools is better these days. My younger sister's experience with dyslexia is similar - at school she was just branded as lazy because they knew she was bright but at university as a mature student, she had a proper assessment and got a laptop with special software and extra time for her assignments, which made a huge difference to her (she got a First, a distinction in her Masters and is now just finishing a PhD - something that I'm sure would astound all the teachers who wrote her off at high school).
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Date: 2017-12-15 12:01 am (UTC)I specifically added questions about nystagmus on my visual impairment "more info" forms for students at my exjob cos it's something I found many partially sighted students felt was dismissed as a factor in their visual experiences. By asking about it, I hoped students would have a chance to think about its impact before we met and I could ask them about. I remember working with one student whose visual acuity was pretty good but nystagmus limited their stamina for reading which a stupid DSA assessor did not account for. I ended up having to get them reassessed with someone who wasn't a fucking numpty so they could actually get proper stuff like what you're getting!
I spent much of my teens explaining repeatedly to numpties why I didn't have nystagmus but my balance WAS definitely fucked. One audiologist giving me balance tests which are supposed to trigger nystagmus got confused and got the boss (cowbag) in. Cowbag then proceeded to YELL at me for not being able to move my eyes to look at little red lights even when my I then my mum explained my eyes CAN'T move like that cos of my rare eye movement condition. Eventually Cowbag decided to stop flouncing and complaining AT me that my test results would be inconclusive. My lovely ENT doc just laughed (at them, not me) and kindly said it was typical of me and that he'd take me on reported symptoms...
I can't tell if I don't get nystagmus because of my eye movement condition OR because I do not have a working vestibulo-ocular reflex (VOR) (a link between eye movement and inner ear balance system). I only discovered at 33 after looking up VOR stuff and playing "what do you see? what can I see?" with my partner that most people see a stable image when they turn their head or move their eyes from side to side (cos of saccadic suppression) and I don't.... I see a blur... And that's been the case for as long as I can remember. I remember lights at night looking like long exposure photography light wiggles from early childhood on car journeys...
I do wish people would explain impairment stuff to parents AND children properly. I think things have improved a lot, when we were infants in the UK we had no right to access (or correct mistakes etc in) our medical records - that didn't come in until the 1990 Access to Medical Records Access Act... We still legally have to do Data Protection Act Subject Access Requests to access records and in my experience those are incomplete... Doctors and clinicians often treated parents as if they were a hassle and hindrance. My mum fared better than most cos she was a nurse so could not only wave her own medical credentials but knew what questions to ask and how to ask them... I think even today clinicians treat you better if you know what questions to ask :(
The modern problem is that if medics don't provide proper info to parents/children, they get it off the Internet which is largely great but can be information overload and extremely stressful. How do non specialists identify what information is pertinent... It's why despite hating charities as a whole, I will direct people to their helplines cos info provision IS something many of them do well. The RNIB are actually especially helpful, I phoned them last year over relay and they were great (I've had issues with VI orgs crashing if I relay call them cos they get confused cos they think I've mixed up deaf and blind...)... I did one of my disability studies essays on "information needs of disabled people" (including children) and I can bang on about this for hours with evidence :D...
I love your explanation of the formal registration process. Sight impairment is the odd one out in legal and registration terms as you're legally disabled without extra proof (which only applies to handful of impairments including MS, cancer and HIV)... Also no other impairment group has a formal registration system as the general one was ditched shortly after the DDA was enacted in the mid 1990s... But the idea of "registered disabled" persists and we're often asked to PROVE it... And you CAN! But absolutely agree that your formal legal status and how you describe your sight makes perfect sense. The whole defining yourself in a spectrum of reality v perception and variability is fucking hard for many of us...
It is also really interesting to see what assistance is helpful and what isn't. So many of us use informal stuff with our close people that we haven't necessarily coded as such, but that is what it is. I managed to make something of my PIP nonsense by thinking about what my partner does for me to be more audible and coherent beyond just having learned some BSL... She speaks in BSLish word order Topic-Comment style which is a lot easier to understand than the waffle English puts in sentences... "Can you pass me that pen?". I might get Pen but lose what is wanted... Whereas [PEN] [GIVE] in sign or verbalised is a lot clearer...
I love that you got a pocket watch, I shall have to steal that idea for other sight impaired folk. It reminds me of one of my students who had a sword belt for her stick which was heavily modded to look like an accessory.
Your bit about reading in comparison to Andrew was interesting too. One of my blind colleagues Patrick and I once did a wee exercise with academics where I drafted an A4 page of text in 12pt Arial one side and 12pt Times New Roman on the other. We put 3 or 4 headings in it so it was about 300 words spaced out. We handed out the sheets and said don't look till we start the timer, but pick a side and read at your usual reading relatively carefully speed, once finished raise your hand. It took 45-90 seconds for everyone to have finished. We had a laptop and speakers (which I'd tested for volume on a hearing minion in advance) and Patrick set JAWS off reading the same text from beginning to end. I think it took 3-4 minutes... Jaws hit the floor as staff were clearly struggling to follow the speech even at that rate... Patrick then showed how JAWS users could use headings to skip around the text more quickly and that if blind users could be directed to certain bits or follow headings then they could be speeded up, but even at best, blind people cannot easily skimread or find info quickly in text and a lot of reading material isn't properly set up for assistive tech, so please to be understanding, providing reading guidance when asked and agree to extra time too.
So pleased your learning support plan is helpful and enabling on your terms. It sounds like your disability adviser is good and understands about treating you as an adult who both can have difficulties taking what you're entitled to AND needs to be given support in such a way that it's "just there" when you need it when you are ready/able to say "actually... I do need, want and am entitled to it"...
(no subject)
Date: 2017-12-16 05:59 am (UTC)I would definitely agree with that. All this "can you see X/do Y?" when they should be asking, honestly, questions more like PIP: can you do this reliably, repeatedly, as often as necessary. These are the factors that nystagmus effects, for me. And I'm sure you know how little most people pay attention to variability and context in disability.
And yeah, I had such good luck with my disability advisor and DSA assessor. They seemed to realize what patterns I might fit I to but asked me about everything than assuming. It was so weird/amazing.
Cowbag then proceeded to YELL at me for not being able to move my eyes to look at little red lights
Oh yeah, I have lots of experience of this too: how dare you not do this thing the way everybody does it automatically! Well, if it's automatic I can't be failing to do it on purpose? But if I said that I was just misbehaving even more.
playing "what do you see? what can I see?"
It was because of this that I leased other people don't see digital clock displays wiggling around when they look at them in a dark room. That kind of problem when looking at my bedside alarm clock was the first time I actually noticed my nystagmus (as I said, it isn't usually apparent to me) as a kid, but of course I didn't know that's what it was. Lit-up clocks like that in the dark, and those signs where lit-up letters scroll slowly along, are still the only times I notice the nystagmus (unless I'm really exhausted, then nothing stays still).
info provision IS something many of them do well.
I think we ended up using info from the RNIB's website for my PIP application, since no other fucker had ever told me anything about my eyes. :) I'm glad they were helpful to you too; I'd like to say that I can't believe people would expect you'd confuse blind and deaf but...actually I can totally believe that. But it's abled people who confuse the two, they talk loudly and slowly at me.
BSLish word order Topic-Comment
This is something I've learned a tiny bit about in one of my linguistics courses this semester. I still only know a miniscule amount about BSL grammar but I find it really interesting. I still want to take that as my language next year; I should see if I can find someone to talk to about this in the new year, while there's some time to figure out if it'll work or not.
I love that you got a pocket watch
I never would've thought of such a thing but there was a Christmas market stall selling them on long chains and I thought it was such a great idea. Here's a couple of pictures of it; it's only little so not cumbersome to wear and works easily for me as something I can read.
The bit about how long it takes JAWS to read something compared to how long a sighted person is really interesting. I think a lot of people would benefit from a demonstration like this, and far too people get the opportunity.
(no subject)
Date: 2017-12-16 05:01 pm (UTC)Definitely. I described a number of common requirements which I knew students in each impairment group/type struggled at university. So for VI I had mobility in unfamiliar places and reading. For deaf I had hearing alarms, following speakers and making notes. Our mobility section specifically said if you couldn't easily walk 2 miles in a day every day to read it cos many studes never walked that far but suddenly discover they CAN'T sustainably do it after a few weeks...
One of the few credits I'll give to whoever designed PIP is the idea of safely repeatably reliably and in a timely manner are not bad ways of thinking about activities.
You see - I see
I see those alarm clocks flickering but I can't remember if I could before 2015 :(.
I now wonder how your vestibulo-ocular reflex works with nystagmus. I'm guessing it probably works a bit but then craps out when you're tired which will be one of the many reasons seeing is tiring.
Confusing deaf and blind
Deaf people get given braille menus sometimes... And yes, what we call the "special wheelchair voice" in our house, but applies to anyone who is being patronising to disabled people...
I think I used a mixture of resources for planning you PIP, RNIB was definitely one of them. I definitely took the idea of "what does seeing involve" and broke things into questions which I'm familiar with doing for work.
I've just drafted a loooong 'questions and considerations' for deaf people document... Uploaded to the better deaf PIP group and already got good feedback so will be on revision 3 before long :D
BSL
If there is ANYthing I can do to support you with BSL please do not hesitate to ask. If you can get a syllabus in advance for the BSL course and show me, I may be able to think of good resources which you can access for extra repetition or additional ways of seeing/doing stuff.
Deaf people are CREATIVE and FLEXIBLE in our communications. Deafblind people are increasingly prominent in the community and demanding their equality. So there's already conventions like "smaller sign space" or signing slower to be more understood.
I have some CDs of stuff as well as much being online and pretty much every BSL book available in the UK at present. Maybe that's a way to LURE you to Birmingham for a visit (I'd happily meet you off a train on the platform at Mordor Central aka New Street)...
JAWS demo
There are demos online on Youtube etc, but most of them are DIRE... If they are not too long and full of "loving sound of own voice" narrator syndrome then they have terrible visuals which don't show the point(s) usefully and often distract from the purpose cos they're SO bad...
Patrick used to make the most appalling videos and had Boring Old White Man syndrome on top of a refusal to listen for signs of boredom or requests to STFU-nao... It was my official job to shut him up before he got lynched in work events...
(no subject)
Date: 2017-12-15 10:49 pm (UTC)(no subject)
Date: 2017-12-16 06:02 am (UTC)(no subject)
Date: 2017-12-16 06:23 pm (UTC)The thing that boggles me the most is the huge gap between the medical and social models. We criticize the medical model for not recognizing how society disables us, but it's also crap because the medicos don't provide us with helpful info. The business of living, coping, getting on with it is the most important, and mostly that seems to happen peer to peer.
Although now I hope that kids are getting some of that support when they're young. It's infuriating that anyone can grow up with the message, "Well, you're almost able-bodied, so we can ignore your need for accommodation." But it certainly has happened to many people I know in my generation (the younger baby boomers).
Are you eligible for access to alternate formats? (Audio, computer text?)