Blind and Visually Impaired Community
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At a loss on how to characterize my vision (self.Blind)
submitted by Callouscals81
Three years later after 3 surgeries I’m at a loss on how to characterize my vision as low vision, legally blind, visually impaired, etc. It’s something that’s been bothering me and I find it difficult to find anyone in a similar position that is as unique as mine as It relates to diabetic retinopathy and how to characterize it.
I have 20/60 vision in best eye/right eye that can’t be corrected with prescription glasses, no peripheral vision (tubular vision/tunnel vision), and other issues such as photophobia, poor depth perception, and little to no night and plethora of other problems that not even my retina doctor can diagnose. I have zero central vision in my left eye with just a little bit of peripheral vision.
I know I don’t owe anyone an explanation but I find myself fumbling my words and becoming self-conscious when asked about my vision. Especially when I don’t fit someone’s criteria for what a blind person is supposed to look like. May seem silly, but not “looking blind” has presented its own unexpected personal insecurities of acceptance by my blind peers.
I guess I would just like to know if anyone is going through anything similar? I tend to struggle with imposter syndrome of not being blind enough. Am I considered legally blind by the government’s definition since I have no peripheral vision in my best eye? Do you just call yourself legally blind or are all of those characterizations interchangeable? Any advice would be much appreciated.
xmachinaxxx 7 points 1y ago
I became legally blind due to diabetic retinopathy. I can understand it bothering you if you don’t have a specific label for your vision. I tell others I’m “legally blind” because I meet the criteria and get SSDI due to my vision but the majority of the general public have no idea what that really even means. Many don’t realize blindness has a large spectrum even when people have the same cause or disease.
According to SSA this is the definition of legal blindness: We consider you to be blind if your vision can’t be corrected to better than 20/200 in your better eye. We also consider you blind if your visual field is 20 degrees or less in your better eye for a period that lasted or is expected to last at least 12 months.
Source: https://www.ssa.gov/pubs/EN-05-10052.pdf
If you need help get it. If you think you may qualify for benefits, apply. Advocate for yourself because I learned quickly that no doctor or agency is going to do it for me. No one specifically told me I was “blind enough”.
I also couldn’t accept using a white cane in public at first even though I needed to. It seems being “blind enough” is something a lot of us struggle with that still have some usable vision and/or lost their vision later in life. But ultimately whatever you label it doesn’t matter, be safe and use whatever tools and assistance you need.
According to SSA this is the definition of legal blindness: We consider you to be blind if your vision can’t be corrected to better than 20/200 in your better eye. We also consider you blind if your visual field is 20 degrees or less in your better eye for a period that lasted or is expected to last at least 12 months.
Source: https://www.ssa.gov/pubs/EN-05-10052.pdf
If you need help get it. If you think you may qualify for benefits, apply. Advocate for yourself because I learned quickly that no doctor or agency is going to do it for me. No one specifically told me I was “blind enough”.
I also couldn’t accept using a white cane in public at first even though I needed to. It seems being “blind enough” is something a lot of us struggle with that still have some usable vision and/or lost their vision later in life. But ultimately whatever you label it doesn’t matter, be safe and use whatever tools and assistance you need.
Callouscals81 [OP] 3 points 1y ago
Thanks for the response. Did you have a vitrectomy surgery? Curious if you have had a similar experience with a pulsating light that occurs every other day. Told my doctor and he said they don’t really have an explanation as it relates to optic nerves and its connection to the brain, especially post surgery.
I don’t need a cane in every scenario as every situation is different depending on the light and other factors, but mobility training is probably the next step, but apparently my local Society for the Blind is backed up because of COVID.
I don’t need a cane in every scenario as every situation is different depending on the light and other factors, but mobility training is probably the next step, but apparently my local Society for the Blind is backed up because of COVID.
mavedenyz 4 points 1y ago
I have had a few vitrectomies and I also experienced a pulsating light. They almost remind me of lightning.
QuentinJamesP89 3 points 1y ago
I've had this same experience with flashing lights after retinal detachment surgeries/vitrectomies. Kind of worried me at first but I was told it's pretty normal.
Callouscals81 [OP] 1 points 1y ago
I have the lightning flashes That tend to be more prevalent during physical exertion, and a separate issue with the pulsating light that is very difficult to explain to people. Happens every other day like clockwork and makes me slightly more sensitive to light, it’s very annoying but I’m used to it at this point.
xmachinaxxx 2 points 1y ago
Sorry, no I haven’t had the surgery. Only multiple anti-VEGF injections and multiple laser photocoagulations.
Definitely keep trying to get O&M training! It helps so much.
Definitely keep trying to get O&M training! It helps so much.
carolineecouture 5 points 1y ago
I use visually impaired. I have Glaucoma.
I would speak with your doctors and ask them. They have probably had to deal with giving people definitions for insurance purposes or Social Security.
Here is a link I found on the SSA website:
$1.
I hope this helps!
Good luck to you.
I would speak with your doctors and ask them. They have probably had to deal with giving people definitions for insurance purposes or Social Security.
Here is a link I found on the SSA website:
$1.
I hope this helps!
Good luck to you.
Fredchasing475 3 points 1y ago
I was just perusing this sub because I had the same question. Wow glad I’m not alone. FWIW I say something like “legally blind but can still read most stuff and can get around with a white cane.” (Got RP, but as my doc says, it could be a lot worse.) That actually seems to satisfy most people, although I think it’s very hard for them to imagine what I actually see. I’ve never ever seen anyone else with a cane in the almost 30 years I’ve lived in this area, so I get why people are confused when they see me and I obviously can still see some stuff. I mean, I need a cane, but still can shop for my own groceries; I always wonder what the checker is thinking
aNonHumanRobot 1 points 1y ago
RP here also and this is what I tell people. "I'm legally blind but I have just enough vision to trick people into thinking I'm normal sighted until I run into a wall". I don't usually say that last part. Or "legally blind but I have just a little bit of vision left". Most people accept that but I am sure they have a hard time understanding what I actually see. For most normal people the thought is either your totally blind or you can see fine, maybe with corrective lens. At one point I would say "I am blind" and people would tell me to get glasses. Or I would say "I have really bad eye sight" and again they would normally comment on me getting new glasses. I stopped doing this as I slowly started to accept the reality of my vision. It was hard emotionally to accept as I really didn't want to admit it to people. Another phrase that works is "I have an extreme vision loss".
As to all the uniqueness of OPs vision, I feel you there. I have about four degrees of vision left and 20\60 and 20/80 and I have no color perception. It's a triple threat to explain. 1. Glasses won't help me see better. 2. I could see color at one time but now it's all black and white. 3. I can only see a small central area where I look. That's tough for most people to grasp.
As to all the uniqueness of OPs vision, I feel you there. I have about four degrees of vision left and 20\60 and 20/80 and I have no color perception. It's a triple threat to explain. 1. Glasses won't help me see better. 2. I could see color at one time but now it's all black and white. 3. I can only see a small central area where I look. That's tough for most people to grasp.
Callouscals81 [OP] 0 points 1y ago
O&M training is on my to-do list. I worry (and I know I shouldn’t) about being called out by some Karen making a scene if they see me with a cane in some situations and without a cane in others lol.
Do you think the basics of mobility training could be self taught through YouTube tutorials as there’s quite a few on there? My Society for the Blind location has a scheduling logjam because of COVID last I checked.
Do you think the basics of mobility training could be self taught through YouTube tutorials as there’s quite a few on there? My Society for the Blind location has a scheduling logjam because of COVID last I checked.
Fredchasing475 2 points 1y ago
I watched a bunch of videos like that before my first OM session. They actually turned out to be pretty useful, and helped make the actual OM training go faster. But I learned a lot from the trainer that I didn’t learn from the videos. And I never would’ve figured out the correct cane length just from watching the videos and listening to their advice about that
Also, and I don’t know about your vision so this may not be appropriate, but for me, I use the cane all the time — even where I feel comfortable enough to probably dispense with it — because every single place I fell or walked into something before I got the cane was an area where I would’ve said “I don’t need a cane here.”
Also, and I don’t know about your vision so this may not be appropriate, but for me, I use the cane all the time — even where I feel comfortable enough to probably dispense with it — because every single place I fell or walked into something before I got the cane was an area where I would’ve said “I don’t need a cane here.”
baistei 3 points 1y ago
I say legally blind because people never took me seriously when I said visually impaired. I'm 20/200 best corrected but have been my whole life and seem to manage better than those with later onsets. I'm 34.
TechnicalPragmatist 2 points 1y ago
I think all of those words are pretty interchangeable. I wouldn’t worry about anyone elses opinion if you’re blind, or not blind enough. That seems like unnecessary drama and stupidity. As long as you’re not faking it, and have visual issues, okay then you’re legally blind, leave it at that.If they want to judge that’s their problem their shallow ways I guess. You’re not totally sighted trying to fool someone.
Nedskee 2 points 1y ago
Hi there, I just saw your post and the great reply that xmachinaxxx left. It sounds like I have traveled a similar path to you. A car accident left me with no vision in one eye and 5% in the other. I had a retinal reattachment and numerous lasers to try to clear things up but to no avail. shortly after the reattachment I had the pulsating light thing every day or so for a few years. They told me the same thing about the optic nerve and brain connection causing issues. I struggled with using a white cane in public for a long time like xmac did. It was embarrassing and even today with my sight in the terrible state it is, I get the "you don't look blind" quite often, even though I use a guide dog. As far as the words to explain your sight, as xmac said the general public doesn't really understand the nomenclature behind vision loss, and sight loss does have a huge spectrum. I generally stick with blind or legally blind when I talk about it. I hope that helps and if you have specific questions about what I see or my surgeries feel free to DM me. Take care!
Callouscals81 [OP] 1 points 1y ago
So the pulsating light eventually went away? For me it’s like there’s a timer that goes off every other day like clockwork that sets off the pulsating light and then it goes away for 24 hours and so on and so forth.
It wasn’t always like this even after my first surgery, but I could never pinpoint exactly when it happened but my guess is after my cataract surgery which was my third surgery.I could be wrong though since my mental faculties were in such a despondent state during my recovery.
It wasn’t always like this even after my first surgery, but I could never pinpoint exactly when it happened but my guess is after my cataract surgery which was my third surgery.I could be wrong though since my mental faculties were in such a despondent state during my recovery.
Nedskee 2 points 1y ago
>cataract surgery
Sorry, I haven't been back on for a while, didn't mean to leave you hanging like that. Mine started right after my cataract surgery and have slowed over the years. Mine were just like yours for quite some time and now I would say they happen one or twice a week and mostly when I first lay down to go to bed. I'm betting it will get better, and it was frustrating that the doctors didn't seem to know what it was and they didn't seem concerned about it.
Sorry, I haven't been back on for a while, didn't mean to leave you hanging like that. Mine started right after my cataract surgery and have slowed over the years. Mine were just like yours for quite some time and now I would say they happen one or twice a week and mostly when I first lay down to go to bed. I'm betting it will get better, and it was frustrating that the doctors didn't seem to know what it was and they didn't seem concerned about it.
[deleted] 1 points 1y ago
[deleted]
B-dub31 2 points 1y ago
I use the terms partially sighted or visually impaired myself.
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