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"...
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baggyeyes
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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"...