Blind and Visually Impaired Community
↑
29
↓
i'm starting to go blind and i have a lot of questions (self.Blind)
submitted by luftkommandant
i'm 14 (15 in february), i have strabismus as well as myopia in both eyes but worse in my right. i have almost no depth perception anymore. i can't get the surgery to fix it because of other things i have. i don't have a cane but i'm hoping to get one soon.
how do you deal with people who think you're faking? that's my main problem. even my mom does, even though i'm diagnosed. i have enough vision to get around, use a computer, etc, so people think i'm not really low vision even when i run into walls and shit.
what screenreaders do you recommend for chromebooks? i have to use one for school and the built in screenreader is shit. i use nvda on my personal laptop, and i like it a lot.
how do i deal with school stuff? i know i'm going to have to talk to the administration about getting a screenreader, plus i'm already getting bullied for being disabled, so i know it's only going to get worse if i get a cane. my mom isn't behind me, she's really against me being visibly disabled and it was hell to even use my crutches at school.
with school, should i be leaving my classes earlier or something? there was a blind girl who did that, and i'm scared of getting my cane stepped on (people make it a game or something to step on my crutches).
does anyone use crutches and a cane? i'm thinking i'll go down to one crutch and on bad days i won't use my cane and use two crutches.
how do you convince a doctor you need a cane? again, my mom isn't backing me, so i'm kind of on my own. i've been running into things, mainly furniture and a lot of people. my vision is only going to get worse from here, and i know that. my insurance only covers one opthamologist visit a year, and by the end of 2018 i'm probably going to be done for.
is there anything i can do to make life easier? just general tips? i have a ton of extensions and stuff for accessibility on my computer, i know how to turn on descriptive audio on netflix and amazon video, i have a screenreader and i know how to use it, i can identify my animals by how they sound when they walk, all that.
i'm sorry this is a lot, but i'm the only low vision/blind person in my area that i know of except for a girl who's in the middle school. this is kind of my only resource until i can get to o&m.
how do you deal with people who think you're faking? that's my main problem. even my mom does, even though i'm diagnosed. i have enough vision to get around, use a computer, etc, so people think i'm not really low vision even when i run into walls and shit.
what screenreaders do you recommend for chromebooks? i have to use one for school and the built in screenreader is shit. i use nvda on my personal laptop, and i like it a lot.
how do i deal with school stuff? i know i'm going to have to talk to the administration about getting a screenreader, plus i'm already getting bullied for being disabled, so i know it's only going to get worse if i get a cane. my mom isn't behind me, she's really against me being visibly disabled and it was hell to even use my crutches at school.
with school, should i be leaving my classes earlier or something? there was a blind girl who did that, and i'm scared of getting my cane stepped on (people make it a game or something to step on my crutches).
does anyone use crutches and a cane? i'm thinking i'll go down to one crutch and on bad days i won't use my cane and use two crutches.
how do you convince a doctor you need a cane? again, my mom isn't backing me, so i'm kind of on my own. i've been running into things, mainly furniture and a lot of people. my vision is only going to get worse from here, and i know that. my insurance only covers one opthamologist visit a year, and by the end of 2018 i'm probably going to be done for.
is there anything i can do to make life easier? just general tips? i have a ton of extensions and stuff for accessibility on my computer, i know how to turn on descriptive audio on netflix and amazon video, i have a screenreader and i know how to use it, i can identify my animals by how they sound when they walk, all that.
i'm sorry this is a lot, but i'm the only low vision/blind person in my area that i know of except for a girl who's in the middle school. this is kind of my only resource until i can get to o&m.
blindjo 13 points 5y ago
Hello! I'm sorry to hear about all of the trouble that you've been having. My vision problems started happening for me around the same age too.
What country are you in? If you're in the united states, you need to work with a counselor to get either a 504 plan or an IEP as soon as possible (oreferrably an IEP). These plans (theoretically) ensure that you're education will remain accessible. If you have any documented disability (meaning that you have medical records), you pretty much should be eligible. So, you can bring in any medical papers with your acuity.
You need one of these plans because even if you have helpful teachers right now, they (and any of your future teachers) are under no obligation to provide additional accomodations until you receive one of these plans. When you begin you annual IEP meetings, make sure to sit in on them and have an active voice in your educational desicions.
See if your school can provide any assistive tech or assistive tech training. We had to use chromebooka at my highschool too and i just used a regular ole laptop from the district and did my work with that. You should also inquire about audio or digital files of books and testing accomodations. I had about double the amount of time allotted for tests because it physically takes me longer to read things. You can even ask to have someone to bubble in your answers on your scantron (you still have to know the answers though lol).
Try to get connected with a Teacher of the Visually Impaired (TVI) from your district. My guess is that that's where the blind girl you knew went. A TVI can help you learn different "blind people" tricks and help serve as an advocate for you. I was fortunate to have a wonderful TVI my last two years of highschool and she was so helpful! You should also see if your district has an o&m instructor
Sorry, i know this comment is super long so i'll post the rest of my advice in another comment in a bit
What country are you in? If you're in the united states, you need to work with a counselor to get either a 504 plan or an IEP as soon as possible (oreferrably an IEP). These plans (theoretically) ensure that you're education will remain accessible. If you have any documented disability (meaning that you have medical records), you pretty much should be eligible. So, you can bring in any medical papers with your acuity.
You need one of these plans because even if you have helpful teachers right now, they (and any of your future teachers) are under no obligation to provide additional accomodations until you receive one of these plans. When you begin you annual IEP meetings, make sure to sit in on them and have an active voice in your educational desicions.
See if your school can provide any assistive tech or assistive tech training. We had to use chromebooka at my highschool too and i just used a regular ole laptop from the district and did my work with that. You should also inquire about audio or digital files of books and testing accomodations. I had about double the amount of time allotted for tests because it physically takes me longer to read things. You can even ask to have someone to bubble in your answers on your scantron (you still have to know the answers though lol).
Try to get connected with a Teacher of the Visually Impaired (TVI) from your district. My guess is that that's where the blind girl you knew went. A TVI can help you learn different "blind people" tricks and help serve as an advocate for you. I was fortunate to have a wonderful TVI my last two years of highschool and she was so helpful! You should also see if your district has an o&m instructor
Sorry, i know this comment is super long so i'll post the rest of my advice in another comment in a bit
luftkommandant [OP] 5 points 5y ago
thank you so much! i am in the u.s., i think i already have a 504 already because of my ptsd and i'm going to need to overhaul that anyway because of my other physical stuff.
blindjo 2 points 5y ago
You're welcome! As far as the other stuff goes, check to see if there are any nonprofit organizations for/of the blind around you. National Federation of the Blind (nfb) has a lot of chapters across the country but i don't have any firsthand experience with them. I've worked a lot with the youth programs at the Braille Institute in CA and they're amazing.
These types of orgs are great for multiple reasons. One, if you're having difficulty getting assistive tech, training, or o&m from your district these places can provide it. In my area, it was common for high school students to rent out BrailleNotes (a pretty cool electronic notetaking device) from the Braille Institute and use that for their schoolwork.
Nonprofit orgs are also a great way to meet other teens who get what you're going through. Prior to my vision loss, i didnt know any other blind people and that was really frustrating. I had the chance to make friends with other visually impaired teens through programs like improv and cooking classes at Braille.
As far as dealing with sighted people, it is frustrating to deal with people who think that you're faking. I have to deal with those folks all the time and it can be tough. I find that my best strategy for those situations is going into "creepy nice customer service mode." I'm comfortable talking about my condition, so i usually just explaim what i can and cant see and why. If someone is acting like a jerk, i'll just go into detail about my retinas to make them feel uncomfortable haha.
If it's any consolation, if you plan on going to college, in general campuses have a pretty accepting vibe.
Self advocacy willl be your friend for basically anything in life.
You don't need to convince a doctor that you need a cane, as long as you have vision worse than 20/200 or less than a visual field of 20 degrees, in the better eye with the best possible correction, you have a legal rught to use a cane.
By the way, i'm proud of you for bejng proactive. You sound like you're dealing with yhis in a mature way
These types of orgs are great for multiple reasons. One, if you're having difficulty getting assistive tech, training, or o&m from your district these places can provide it. In my area, it was common for high school students to rent out BrailleNotes (a pretty cool electronic notetaking device) from the Braille Institute and use that for their schoolwork.
Nonprofit orgs are also a great way to meet other teens who get what you're going through. Prior to my vision loss, i didnt know any other blind people and that was really frustrating. I had the chance to make friends with other visually impaired teens through programs like improv and cooking classes at Braille.
As far as dealing with sighted people, it is frustrating to deal with people who think that you're faking. I have to deal with those folks all the time and it can be tough. I find that my best strategy for those situations is going into "creepy nice customer service mode." I'm comfortable talking about my condition, so i usually just explaim what i can and cant see and why. If someone is acting like a jerk, i'll just go into detail about my retinas to make them feel uncomfortable haha.
If it's any consolation, if you plan on going to college, in general campuses have a pretty accepting vibe.
Self advocacy willl be your friend for basically anything in life.
You don't need to convince a doctor that you need a cane, as long as you have vision worse than 20/200 or less than a visual field of 20 degrees, in the better eye with the best possible correction, you have a legal rught to use a cane.
By the way, i'm proud of you for bejng proactive. You sound like you're dealing with yhis in a mature way
Ramildo 3 points 5y ago
Why do you bump into things and people? Do you feel that you have loss of contrast or a reduced field of view? I ask because myopia and strabismus doesn't explain it. Even if your corrected myopia gave you a visual acuity of 20/800 you shouldn't be bumping into things, so there must be something else. I have glaucoma, and the first sign that my vision was deteriorating was loss of contrast, which I had a very hard time explaining to others. It felt like there was fog everywhere, but my description of how I was seeing didn't raise any red flags to my doctor since my visual acuity and vision field didn't change initially, and in my case they couldn't see the back of my eyes because my pupils don't dilate, so the conclusion that it was optic nerve damage came too late.
luftkommandant [OP] 2 points 5y ago
my eyes are crossed enough that i completely mistake where things are. it's mostly just the corners of furniture and edges of walls.
Ramildo 3 points 5y ago
Oh, I get it. Didn't think your strabismus was that bad. Sorry.
BeardedJerry 2 points 5y ago
Bit to long for me to read everything first thing in the morning but I'll try to answer what I can. You don't have to leave class early but I used to do it sometimes when my mom or somebody needed to pic me up earlier for some reason. I did take school buses but not all the time. I had to deal with people thinking I was taking aswell. One of my teachers in 9th grade actually called me a liar in front of my whole class when I said I couldn't see the board.
As for people messing with your cane. I don't have a cane yet either. I got a bit of training with one but didn't make use of it so I can't use a cane yet. There are laws protecting white canes. If somebody messes with your cane report it. Schools won't tolerate that shit.
That's about as far as I read but I'll tell you a little story now.
Part of my eye condition is photosensitivity. Meaning I can't see in bright light. So naturally I stayed inside most of the time as a kid. But because of that I had/have very pale white skin. Around when I was 14 on a field trip some kids from my class and other classes approached me while I was waiting in line and started making fun of me for being so white. Basically kids are awful. I really wish that parents would teach their kids some freaking respect. Bullying a disabled person especially for their disability is just disgusting and unnacceptable.
You don''t need a doctor to get a white canes afaik. But if youve been diagnosed you can hook up with a blind society like CNIB in Canada or NFB in the US
If non blind people started walking around with white canes it would be a real problem though
As for people messing with your cane. I don't have a cane yet either. I got a bit of training with one but didn't make use of it so I can't use a cane yet. There are laws protecting white canes. If somebody messes with your cane report it. Schools won't tolerate that shit.
That's about as far as I read but I'll tell you a little story now.
Part of my eye condition is photosensitivity. Meaning I can't see in bright light. So naturally I stayed inside most of the time as a kid. But because of that I had/have very pale white skin. Around when I was 14 on a field trip some kids from my class and other classes approached me while I was waiting in line and started making fun of me for being so white. Basically kids are awful. I really wish that parents would teach their kids some freaking respect. Bullying a disabled person especially for their disability is just disgusting and unnacceptable.
You don''t need a doctor to get a white canes afaik. But if youve been diagnosed you can hook up with a blind society like CNIB in Canada or NFB in the US
If non blind people started walking around with white canes it would be a real problem though
LUCKY12910 1 points 5y ago
I lost my sight when I was 14 15 just like you. There are people that are totally blind and people thing there are faking it. Most blind people don't look blind meaning their eyes are not messed up. It has happened to me to just keep your head up kid. Meet some blind teenagers your age it will be a positive experience.
Fange_Strellow 1 points 5y ago
I'm sorry to hear you don't have family support in this. Low-vision is definitely not "faking it." I don't know if it would help, but you could try explaining exactly what your vision is like to your mom and see if she can imagine how it makes things difficult. If you are in the US, you could look into getting connected with your state's vocational rehabilitation (VR) program, or even see if your state has a commission for the blind. You may also have some nearby Independent Living Centers that you could try looking up online. These locations have professionals who can offer assistance and support in locating the resources you may need. For a lot of these organizations, you are going to need to have access to your medical records that indicate your vision status. Having these documents are going to be necessary in a lot of circumstances to prove your elgibility. It might sound tough, but there are skills, knowledge and technology available that make being low-vision or blind much simpler and more accessible. You are going to need to dig deep and fight for yourself to get what you need, but you will be stronger for it. Good luck!
This nonprofit website is run by volunteers.
Please contribute if you can. Thank you!
Our mission is to provide everyone with access to large-
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
©2023 HumbleCat Inc • HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.