Describing What I See Legally Blind
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- Опубліковано 6 вер 2024
- As a legally blind person, I often have to describe what I see otherwise I'll either just be passed off as sighted or blind. In this video, I describe the spectrum of blindness I experience with Nystagmus and Ocular Albinism.
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How would you describe your vision or blindness to me? 👀🦯
"Ditto." 🤣
I have the same problem with pupils dancing around. Congenital Anaredia is light and glare sensitive as the Pupil doesn't have much of an Iris and when outside it looks like my eyes are closed but actually squinting.
I can only see shapes and colors! I can see more define shapes in my right eye. In my left eye I can only see really simple shapes. I'm severly photophobic and my peripheral is black, then blury. I have to turn my head to see anything that isn't directly in front of me. I also have little to no depth perception
see and no see, in the same time . sorry i don't know to write in English :)
I just have a mild glasses prescription, but I'm very sensitive to stimuli, especially light and sound. Most situations are too bright and too loud for me. It's as if someone's yelling...at my eyes. For me, it's a brain thing, but it affects how I perceive outside information.
Thank you for creating this and being so transparent. My son was born at 1lb 6oz and had a long NICU stay and complicated medical issues resulted, included brain hemorrhages. He has horizontal nystagmus which started around 4 months old. He is now 3 years old and doing amazingly well. We are always trying to learn more and help him the best we can as he cannot easily describe to us what he sees. Thus far we know certainly of the nystagmus, low vision and poor depth perception. You are a great source of truth and hope for all of us.. thank you!
Thanks man. These kinda vids are super helpful. Applying for jobs at the minute and I always send your vids to employers when explaining what albinism and nystagmus is like to live with. 💖
Ah man! I tried to comment but I guess it got deleted??
Firstly, this video was super interesting.
To describe my eyes:
My right eye is near-sighted, so everything farther away than six inches or so is blurry but in a way that's correctible with corrective lenses. This eye also sees colors in a muted way, so I use the High Contrast extension on Chrome to see gray text pretty often.
My left eye is an oddball. It's a lazy eye and wanders, and there are a lot of black blobs in my vision in this eye (not floaters; these blobs are almost completely opaque and impossible to see around/through). They cover up maybe half of my field of vision, but don't really affect my peripheral vision. The non-blobby vision is incredibly blurry and can't really be helped by corrective lenses; a lot of the time, optometrists and ophthalmologists just prescribe a plain lens for my left eye. Basically I can't read or anything with this eye at all.
When my eyes try to work together...they don't. I have constant double vision and no binocular depth perception.
I think the weirdest part is that I once had an optometrist not believe me when I described this to her?? (Yes, I complained and got a refund.)
I have Retinitis Pigmentosa I compare my vision like those old TV's without an antena, lots and lots of lights and tunnel vision so it is like watching an old tv with a toilet paper tube
Interesting description! Thanks for sharing!!
I have a pretty rare condition called achromatopsia, try saying that 10x fast lol. My vision is extremely blurry and I see more in outlines and no detail, at least until you get within 2ft of me. I have extreme photophobia a.k.a. light sensitivity and colorblindness. I've got issues with depth perception and I have special tinted glasses and contact lenses. I rarely use my cane because I have a guide dog. Your channel has definitely inspired me to want to make UA-cam videos!
I have had Strabismus (crossed eyes) since early infancy. When your eyes aren't aligned, the image from both eyes are unable to combined into a singular 3D image, and you see double. My brain compensated for this by blocking out part of the turned eye's image, as to not to see double. Consequently I am left with a lack of 3D vision, and therefore "depth perception". So despite being 20/20 in visual acuity, I still lack quite a bit.
Excellent video. I only have one eye. It is legally blind.(ROP) I describe it as like walking around in a drunken impressionist painting. There is no Visual depth perception. All colors blend into each other. And light always over-saturates everything.
You are strong bro♥️
Your fan from Egypt
This was cool. I'm single-sided deaf which is not all that much of a challenge in many situations, but it can become a train wreck in others. One characteristic of the experience is that listening to others in a social setting is exhausting after a while. (And I've heard others who are single-sided deaf say the same thing.) I just get tired of trying so hard to follow a conversation which is what others do easily. I used to before losing the hearing on one side. I know this is to a lesser degree than you have described with your sight, but it was fascinating to hear that you experience something that is similar in many regards.
What is my vision like? I'm mildly near-sighted, which means objects close to me are in clear focus and object further away have fuzzy edges. I struggle to read things that are farther away because all the vertical lines of the letters start to look like they're hopping between neighbouring letters and I can't quite tell which letter each line belongs to.
I have astigmatism, and I believe that's the cause of what I'm about to describe: I adapt well to near-darkness, but there's a large range of "not bright or dark enough" where light sources feel too bright and overblown and everything else seems too dim. I can look at backlit screens in total or near darkness with no problem, but I can't focus on the same screen in, say, late evening light when the sun is setting. My mom is the same way so I grew up in an environment where occupied rooms were always well lit, but now I live with my husband who grew up in a "turn those extra lights off" sort of family and we're constantly battling over how many lights should be turned on. Our house is mostly wired for lamps and I hate it because once the sun goes down the lamps don't cast enough light and cause the above-mentioned late evening sunset light level that my eyes cannot handle. This is why I do most of my work in the living room where we actually have some ceiling lighting.
I mentioned that I adapt well to near-total darkness, and that's true, but I don't do well with bright points of light in darkness either. I absolutely hate the idea of driving at night because I have very little depth perception in relation to the lights on vehicles. Molly Burke once described her residual vision in that kind of situation and how oncoming traffic is just points of light that stay the same and then disappear as the car passes. For me, they don't change until they're about 6-8 car lengths away, and then as they illuminate enough details of the vehicle they're attached to then my brain can figure out where that thing is. The rare times I drive at night I will absolutely be that frustrating person taking forever to move when I have to turn across lanes of traffic, because I have no idea how far off that pair of headlights is, and if there are multiple lanes to be crossed I don't know which lane they're in.
I find blue lights on digital displays very hard to read but red is just fine. My in-laws have an open concept house where the kitchen, living and dining room spaces are all open to each other. If we're all sitting on the couch on the other end of that space everyone else can read the digital clock on the stove, but I just see an overblown blur of blue light where I know the clock panel is. if you took a typical digital alarm clock with a red display and set it the same distance away, I'd at least be able to make a good guess.
I also experience something called "visual snow," which means nothing is ever one flat colour (unless it's too bright to look at.) Everything looks like an old TV tuned to a channel that it can't receive, static that's constantly in motion. It's more obvious on large objects of one colour, like a bare wall or a tabletop, but I can see it in just about everything. I've read that it's often comorbid with tinnitus and I do have that as well. I do also have floaters, which means I can see and am constantly aware of the itty bitty bits of debris inside my eyes. Sometimes when I see things move I'll still see a ghosting of the object's edges for a few seconds, or it will feel like there's a pressure spot on my eyeball that is causing me to not see something I should. I absolutely HATE websites that have those big banner spaces that rotate through a set of images with a horizontal sliding animation because the combination of the backlit screen and that motion creates a feeling of physically pulling my eyeballs to that side of my skull.
Hi why do we have the exact same eyes????
I remember bringing up the blue light issue to the assistant eye doctor when we were getting some testing done and she said that was normal??? And I’m like, look I’m sure these people want their blue lighted letters to be seen but I can’t see them. They are not in this plane of existence for some reason!!
Another thing too, do people not normally have floaters?? Same with the visual snow thing, kind of like these little teeny teeny tiny static dots over everything, I usually only notice it at night and it’s often paired with the left overs of whatever light I was looking at before!
Thanks for explaining this. It will help teachers of K-12 students better understand their students who experience the challenge of low vision in school. I became blind in one eye overnight (NAION) and in that eye, there is LESS light than in the other eye, so sunglasses don’t help at all. Neither do magnifiers. The optic nerve is so impacted that all is blurry except my peripheral vision but who can function only with peripheral vision? Thankfully, my other eye can do all the work and I can even still drive. But 15-30% of those with this condition eventually lose vision in the other eye and there is no treatment, so that knowledge is always in the background, helping me appreciate the vision and life experiences I have here and now!
I just found out that I’m actually legally blind due to my peripheral vision loss from my Retinopathy of Prematurity, 20 degrees of vision. I also have nystagmus like you, but interestingly I have latent nystagmus which means my eyes only dance when I’m having one eye covered. I also have bad depth perception, light sensitivity, very nearsighted and night blind so I can’t see anything in the dark and very little in dim lighting
hi james! thank you for an interesting video! i recently found your channel and i really enjoy your work :-)
i am a sighted person who wears glasses and what i know am not colour blind or have any other condition. while i can move around in society pretty well without glasses, i prefer not to, since i strain my eyes without them and have a very easily triggered head ache that sticks around for a long time if it is triggered. i have never understood if i am far or nearsighted, because if i take my glasses off, i can still most of the time make out texts far away, but letters are very blurry and melt into each other, but if i take time and make the effort i can still read them. reading letters close to my eyes is also a problem, because those don't become blurry, but fuzzy and smudged around the edges. not wearing glasses simply hurts my head and eyes! i am sensitive to light and too much input, such as flashing or/and bright colours, which also triggers my head aches. moving around in darkness is something i really like, because even though i can't see properly, my brain gets to rest from all the input and colours.
Very interesting. Another very informative video.
On a vision chart I can clearly see to the forth row down then the fifth row I can usually pick up the end letters and the middle ones blur together. If letters are to close together or sometimes on curtain colour backgrounds, the letters will just look like blocks of colour rather than letters. I have had double vision (when both eyes are open), for the past 16 years. If one eye is covered/ closed, it disappears but will come back as soon as I open it again. This is due to a head injury I sustained just a few months post major brain surgery. Even though I’m pretty used to this now after 16 years, I’m still always walking into things or falling, as my visual perception is awful. I also have blind spots in my peripheral vision.
understood succinctly how you see - the blurry layers and shaking getting more & more profound the further out...thank you for explaining. can relate to the pain & fatigue from my pelvic/hip disability. as the day goes on, it gets tiring and my stamina & patience wear thin resulting in 9 hrs “actually restful” sleep being critical to recharge. enjoying your channel and perspectives. all the best to you james.
Hello James
Just a short comment to let you know there are others who have nystagmus as well and we know exactly what you're talking about. When I was in high school some bullies used to tease me calling me buzz on because they thought I looked like I was high all the time due to my nystagmus.
I hear ya! Always know, you're more than some bully's insecurity. Stay strong!
As someone who also has congenital nystagmus (as a byproduct of aniridia), and having it since birth, I can relate to a lot of the descriptions you mentioned (blurry focus, light sensitivity etc). For me I describe my nystagmus as having a constant double exposure with the second image being more like a hologram (i believe this is because of the nystagmus moving in a diagonal motion for me). Because the movement is rapid I see the object as if it's moving but at the same time not (if that makes sense) It means every light I see twice, every shadow I see twice and things blur/blend on top of each other. It's really hard to explain to people with vision what I can and can't see, especially as since birth I've had limited vision, so I can't say what I can't see (I've never seen it). But videos like this are useful tools for people to show others how it's not as simple as vision/no vision. And I hope this inspires and encourages others to find ways to express what they see in their world. Great video, keep up the good work.
hi I just chance upon your video and I can totally relate for me I am legally blind I can only use my side vision in my right eye and people usually think I have got funny eyes because my eyes usually look at different direction when looking at people and I am so inspired by your videos great job ❤
Thank you so much for enlightening me on your abilities. With glasses I have 20/20 vision. Without, I still have decent vision. As a music teacher, I encounter people of all ages, stages, talents and abilities. It is so helpful for me to be aware of what my students may experience. Thank you for taking the time to educate others. Keep doing what you do.
I relate! its an expected and inevitable question. Also this topic could never get boring.
James watching your videos has helped me empathise with blind visually impaired people, I've learnt so much!. Please keep up the quality content. And to me you look perfectly normal until I notice your eyes moving a little bit.
Hi, James :) Thanks for this video. I have one about how hydrocephalus made me legally blind in 2012. Even people at the Blind Center I went to didn't know about it, so I had to explain from the bottom up. Basically my eyes act like a very old TV with bad reception and heavy snow.
I see blobs of blurriness and on top of that things are too bright. It’s like looking through a camera that isn’t focused at all and has the exposure turned up almost all the way.
Hey man I’m so inspired by you, my brother also has nystagmus and has similar vision to how described, how was your school life? Thank you so much for this video
I'm going to say that the blurriness in my vision is abou 50% of yours, but my light sensitivity is more severe than yours. My eyes don't really adjust to dark spaces, and if there is one light, it makes my nystagmus go crazy. I can see slightly better out of my peripheral vision, but it's not by a lot. I didn't realise how little you could actually see. I wear glasses, and they help, but it's still blurry. Sorry for all of the reading or having voiceover read to you. I hope this is a coherent thought, because it's way too much for me to proofread. Thank you for sharing your story and giving insight to other blind individuals. If you were to give a younger blind student advice, what advice would you give? Have a great day, and feel better soon!
My son is almost a year old and he was born with Joubert Syndrome, a rare genetic disorder (his causative gene is CEP290). In his variant, his sight and kidney function is impaired. At the moment, his kidneys are fine, but he does struggle with vertical nystagmus, strabismus (squint), hypermetropia (far sightedness) and photophobia. Your video has gone a long way to help me and my family “see” things from his eyes. Thank you so much for sharing your story. You can learn about our son Tobias here: facebook.com/mrmoomah/
For me, i don’t perceive the shaking. Its just, like you said, fatiguing to focus. When my eyes decide to really act up, I just completely lose the sharpness of what I’m looking at. I also have comically bad balance lol
I am not legally blind but my vision without my glasses is abysmal. Thankfully it can be corrected with glasses!
I have astigmatism in both eyes, with one being worse than the other. Without my glasses everything is really blurry except when it’s very close to my face, maybe 6 inches or so.
Lights are big fluffy orbs where I can see my floaters on my eyes and my eyelashes if I squint... faces are mostly not there, usually just dark shadows for their features and their regular skin color covers everything else.
I also see a lot of static in my vision? Like just kind of in the background, Like what you see when you close your eyes, even with my glasses on but idk if that’s normal or not.
Even with my glasses on, at night, while driving, Any blue lights are very difficult for me to see, like if it’s a sign on a building and it’s lit up blue, my brain just says “nah that doesn’t exist in this realm, please try again later”
All that being said, my stepbrother has nystagmus and had a couple surgeries on his eyes to try and correct it. I don’t recall if he’s considered legally blind or not, he wears glasses and is able to see and drive and work, but his eyes shake. What I’ve noticed is that people who are blind with nystagmus you only notice their eyes shaking, but my stepbrother, who is sighted with nystagmus, shakes his whole head to oppose the shaking of his eyes. He was my first experience with nystagmus so it’s weird seeing it on folks who don’t shake their heads with it!
I have nystagmus too. I can see light and shadows. My eye condition is called Lebers congenital Emarosa. LCA. Sorry about the spelling
I have Glaucoma and Horizontal Nystagmus I see halos around lights and I see numbers on a clock dancing I’m 20/200 in my better eye
I have cone rod dystrophy with Stargardt‘s disease. I also have a nystagmus and I also have something called Charles Bonet syndrome. I describe my vision as seeing some thing in slight motion through fog and also the photophobia sensitivity. I only have 10% vision and there are several blind spots within my field of vision
I have nystagmus that varies in intensity due to optic nerve damage and I cannot just sit down and read for more than 15 minutes. Every time I told this to a teacher in school I was accused of making up excuses because I was lazy
I have nygstagmus but i don't see things moving when they are tired i can nit focus on something they go everywhere and j have a heading when this happen
i have nystagmus, but i don't see things shaking like that unless I am tired and it's like a digital radio, or something. I'm loosing vision and field and don't know why. I was born with septo optic dysplaisa / optic nerve hypoplasia,.. noone can tell me why. :s :O :(
Im visually impaired and my right eye “shakes” idk how to describe it, so when im forced to use only my right eye on those eye tests, the only letter i can manage to barely see is the giant E lol
My vision can be corrected with glasses/contacts (tho I only started wearing contacts to get rid of the foggy glasses from masks lol). I had amblyopia and first got glasses just after I turned a year old. Back then they didn’t have like special glasses like they do now for babies where they have like little goggles or whatnot and my mom will never hesitate to talk about how annoying it was to try and get me to keep my glasses on ahahaha. Eventually it corrected itself by some miracle after about 10 years & now I have glasses for a completely different reason!
My vision is 20/600. So I’m technically legally blind but I can’t see without my glasses. I also have light sensitivity. It’s annoying. How do you deal with the dancing eyes?
I've gotten used to it personally. If the Nystagmus does speed up I know to rest my eyes, take a break from what I'm doing.
Am I the only person who's not blind and watching this video?????😕🤷♀️
Hey James great video, it’s interesting to learn how others in the blind and visually impered community see. Let’s see the best way I could describe my vision is, I have night blindness so essentially I can’t see anything at night or in very dark places aside for lights, during the day I can see a bit more but because it’s retina dystrophy I can only see two or three feet in front of me before things are very blurry and can not make out details, it’s like seeing a bunch of blurry colors, there is also this constant bluriness to my vision, I have no depth perception, my right eye is a lazy eye so I can’t control it. In a way I somehow understand a bit about having eyes constantly move with out you’re control, also there is no central vision on that right eye, so it’s like trying to focus on something but being unable to due to having a blurry spot in the center that wont go away, the peripheral vision is really what works on that eye. Oh also retinal dystrophy also causes problems with colors and gets confused with color blindness, I have difficulty telling apart black from naivy blue and dark purple sometimes being seen as brown or black, there have also been times that the naivy blue looks like brown to me, I also struggle with seeing to bright colors in light backgrounds because they blend together, I get floaters in my vision but they don’t bother me. In the past I would describe my vision as a camera having it’s filter broken so it can no longer focus anymore. Over the years I’ve learned to se my other senses much better cause the little vision isn’t that good and my eyes get way blurrier if I strained them or they close, I can’t really read long things with out my eyes feeling fatigue.
I am legally blind
I have 20/20 vision and no particular eye condition but i'm quite nearsighted not very high but not very low either (-5) without glasse i can't really use my computer without using the zoom mode but it's fine to use both my tablet and phone at a close distance, i like to start the day a little blurry since i can get around fine. With my glasses i assume i see perfect everything is sharp (blurry=smooth) close or far except if i don't look through the optical center on the side it's a bit blurry in the distance and bent due to the pincushion effect for a certain amount of correction. I mostly look straight ahead because that's where i see the best, another reason is i have a small nystagmus which is hardly noticeable (no one ever asked about it so i doubt they noticed it) when i look straight ahead but makes things move when i look to the side. My nystagmus also makes things move back and forth horizontally when i'm tired but i guess as it is so small it never really impacted me and i only recently got curious about it and that's how i discovered your channel. I can also trigger my nystagmus at will and i play with it a little as well as my few floaters. Overall i like my vision and the fact i can change it with glasses taking them off or putting them on
James, Trap your eyes into one corner of your eyes, as in giving a sly look as this works for my son. People may think you are giving a dirty look but if your wear dark glasses then they can't even see what you are doing.
I tell my family it’s like looking through a peephole and then pressing the focus on a camera. Sometimes my brain/eyes will focus... sometimes it won’t and it will be super blurry through that peephole.
Great
All I'm going to say is that I like what I see in this video. #MiniCrush ♥
Is there any kind of treatment for this or any way to correct the blurriness to see clearly?
Nope, not really. Not really interested in anything though. Life is good and 385 million people are impacted by blindness . Eyes are complex and I don’t think it’s necessary to fund cures or medical research towards curing something that each specific condition will need some type of different cure. I’m in the mindset that we should just make our society and the world More accessible
I have RP space redness space pigmentosa space for Deborah down space Lawrence moon I am a high functioning person who loves tech loves being able to help people learn about Apple devices and how do use them I feel this is the most giving that to the blind community and I love being able to learn about other disabilities I really enjoyed what people have done on UA-cam you guys have open my eyes and show me ways how to well not be afraid anymore about our P and I want to say thank you what are your favourite apps your favourite things to do on your spare time what's your favourite what's your favourite food and what's your favourite fitness and if you had one skill what would it be just curious thank you for your channel
Do u know any indian UA-camrs and secondly how u read comments....
So, you can see..... Barely
Hold it down
great video! and what i see is a cutie 😘❤
You are hot James!