>1. How has the world changed for you? Obviously sight, one of the 5 senses is now impaired or removed. How has this changed the way you act or think?

- Honestly, I'd say it's made me more empathetic. As a teen, I was very much a "fuck everyone else, their offense is their issue, haha slurs are funny" kind of garbage person. I now try to be more caring about others because of how much nonsense I've dealt with. Being patronized like I'm a lap dog and not a functioning almost 25 year old makes my blood boil, so I tend to be less forgiving of discrimination, even if I understand where it's coming from. I also struggled with the whole "you are a representative of the blindness community at all times" part of it. For about 2 years I felt like I had to have on makeup, have my hair done, dress a step nicer than I ever had, and look extremely put together. Now, I have run out of fucks to give and I'll wear yoga pants and a band shirt I've had for a decade just to be comfortable.

>2. If you had an SO when you went blind, how did they react? How about your parents, siblings or any other family?

- I was single when it happened, so thankfully I didn't have to deal with that piece of it. I've talked about it before, but my mother's negligence and medical neglect of me caused me to be permanently blind, since she chose not to get me the help I needed. She is very much the infantilizing type, minimizing me to more of a token she can get sympathy with. Several others in my family are also bad about it, making assumptions that just because they couldn't do something with their eyes closed, today, that I couldn't do it either. I have an aunt and an uncle that are great though and just take me at my word that I can do certain things without having my hands held.

>3. If you were employed at work what happened? Was their a shift in the type of work you did? Did you get fired?

- N/A

>4. Was it hard to learn Braille?

- Quite a bit, actually. I have constant tingles in my fingertips so feeling paper braille can be quite difficult. I was also taught with used braille books, so the soft braille was also rubbed down. If I could have learned with a borrowed braille display where I could really feel the dots, I would have struggled much less. It's still pretty hard, though, not gonna lie. Many letters, like A, K and U can be mistaken for each other if you're going too fast and miss the bottom row, or bleed together cells. It's very situation dependant as well, so it can get very complex.

>5. This is sort of a weird question and is personal, not school related, but what do you see? This always interested me. Is it black? Is there nothing?

- I'm what's known as a low partial. In my right eye I'm much closer to light perceptive as much of my vision is either complete blindness or exceedingly little difference. I have a constant static in my vision, so looking around, things seem to be moving even when I manage to keep my eyes still. I also have Charles Bonnet Syndrome as well as color blindness, so in the sepia and sky blue static of my vision, I see a lot of faces, eyes, and non-specific horror movie stuff. I've done a few AMA's about it, with varying success.

> How has the world changed for you? Obviously sight, one of the 5 senses is now impaired or removed.

It's certainly a lot more challenging, requiring lots of energy-draining strategies and planning for even the most mundane of tasks without exception since blindness affects everything across the board. As a result of this I choose to do nothing, and because of that my life has become extremely boring and dull, a limbo where nothing of interesting ever happens.

> If you had an S/O when you went blind how did they react? How about your parents, siblings or any other family?

I didn't have a significant other, so that part of the question doesn't apply to me. Regarding my family they were and still are extremely supporting, too much in my opinion, to the point that they don't even let me do anything alone because they fear that I may get hurt, robbed, scammed, or somehow taken advantage of.

> If you were employed at work what happened? Was their a shift in the type of work you did? Did you get fired?

I quit my job as an IT consultant at the first sign something was wrong with my vision. At the time I intended to have whatever was wrong fixed and then return to work, but things didn't progress the way I wanted and I ended up going completely blind.

> Was it hard to learn Braille?

I struggle a lot with Braille, not because I have trouble decoding it but rather because I have trouble sensing it.

> This is sort of a weird question and is personal, not school related, but what do you see?

My left field of view sees whatever my brain thinks the world looks like from my perspective, giving me the impression that I'm actually seeing things when I'm in a familiar place, but I know I'm not because it's completely inaccurate when I'm in unfamiliar places. My right field of view only sees white clouds on a black background which sometimes come from light sources, but I'm not actually seeing any lights since I can't see my phone's flash which I remember to be blindingly bright.

I'm partially sighted with retinitis pigmentosa (RP), so I'll do my best. I only got diagnosed this year so I am still kind of trying to process that.

1. I never actually noticed my world change, as my sight disappeared so slowly. I can't remember having a full field of vision, but I know that my field of vision is very reduced. I guess once I found out, it made more sense why I kept missing things on the outside or walking into things. I am however scared of the future and how potentially losing another sense might affect me.

2. I was single. I will say tho that the time I was being diagnosed and having all the tests was really stressful, and it affected my friendships. My mum went into attack mode almost immediately, trying to find ways around things and getting information out to relevant people (school). My siblings are still the same, maybe just slightly jealous bc I recieve benefits. The rest of my family are all still the same too, if not just a bit more thoughtful of where to put things, and telling me if there's an obstacle that I could fall over (e.g the other week my dad told me he'd left his muddy workboots outside the door so I didn't trip). My dad also adapted our house by painting the steps for me and putting a reflective strip on a door in my house that I always walk into. All in all, my family are very supportive.

3. I didn't have a job at the time, but when I went back to my seasonal summer job this summer, I made them aware of it, and they were okay with it. I didn't particularly need specific adaptations as I can get along fairly well. However I am glad they gave me shorter shifts than other people my age there. It would have killed me to do 8-10 hours 4/5 times a week.

4. I haven't learnt braille yet, I'll explain why in q5. However I have learnt how to use a white cane.

5. RP is where you lose your peripheral vision very slowly, and it also affects your night vision. For me, I cannot see anything in the dark, so I prefer not to leave the house at night unless I'm with someone or have a very bright torch. In the parts of my vision that I've lost, it isn't black, I just see nothing. There's where I can see, and then if your hand/object goes out of that, it simply doesn't exist. It's nothing. However in my peripherals I still have some light perception, so if someone was to turn a overhead light on, I would perceive that there's a light been turned on. So far only my peripheral vision is affected, so I can actually see perfectly in my central vision with glasses, and even without them I can still see quite well, hence why I haven't started learning braille yet. I think my advisors are planning on starting that soon tho?

Hopefully this helps you, if you have any more questions feel free to ask them!

hi, retinitis pigmentosa here (meaning night vision goes first, then peripheral vision, then central, and I have issues with contrast and depth perception). I was registered as legally blind a couple of years ago but still have some central vision.

1. it takes a LOT longer to get around. most people assume I'm totally blind when they see my white cane out, but I can see, it just takes me longer to figure out where everything is. if I drop or misplace something, it takes more time to figure out where it went, because I just have a small patch of central vision. I've started corralling stuff around the house on trays because it makes it easier to find.
2. been married/with the same person for a long time (23 years), and I'm still the same person. he's OK with it, and totally supportive—we're making adjustments along the way. he's learned not to steer me around, and that I'll ask for help if I need it. (one of the biggest pain in the ass things when you go blind, I've found, is people grabbing you or making assumptions about how much you can see. or YELLING REALLY LOUDLY because they assume you can't hear too.) as far as support from family, not so much -- my aunt apparently said "well, I've never heard of that!" when my mom told her I had RP, and as far as I know, she still doesn't think it's a real thing. my mom also seems kind of embarrassed when I whip out the cane sometimes.
3. RP is very slow and progresses over decades. so far, it hasn't really been a problem (again, because I still have central vision and work on computers all day), and most of my employers have been supportive when I've told them. the only time it's been a problem is socially (like, if someone sticks their hand out for a handshake at work, or tries to give me something, I really can't see it.)
4. haven't learned Braille yet and won't for awhile, again because of the central vision. please don't assume that all blind people have the same amount of sight!
5. hard question to answer, because I'm always focused on what I CAN see, if that makes any sense, not what I can't. I guess if I had to answer, I'd say it's just black, like tunnel vision. I'm also getting cataracts in my central vision now, and those look like just blurry/dark patches. a lot of people with RP also see frequent flashes of light across their field of vision, which is no fun.

hope that helps!

>1. How has the world changed for you? Obviously sight, one of the 5 senses is now impaired or removed. How has this changed the way you act or think?

It's changed in a lot of ways that, while each item may seem small, feel much more daunting when combined. On top of that, there are a lot of people who try to *"help"* but more often than not: 1) make things worse, 2) unintentionally expose you to the chance of further injury/frustration, 3) set you up to be taken advantage of. Many times, all it takes is one "incident" to set someone's independence back by months (possibly years).

>2. If you had an SO when you went blind, how did they react? How about your parents, siblings or any other family?

My mother was initially supportive, but the truth came out when she was frustrated/low on cigarettes. "You were supposed to be the one taking care of me! Without me, they're gonna walk all over you if you don't stop them. Grow a spine!" My dad left when I was young, so he was never a part of it. I only met him once since the vision loss and he kept himself detached, struggling to not talk about my disability. My sister's been very supportive but I try my best to not be a burden since she already has two kids and multiple jobs.

>3. If you were employed at work what happened? Was there a shift in the type of work you did? Did you get fired?

The vision loss started while I was in college, so I was referred to the State Department of Labor to rehabilitate my navigational difficulties on-site with a support specialist. I also trained with multiple common software solutions for computer applications (ZoomText, JAWS, Narrator, later on being familiarized with text-to-speech functionality). After about a month of "re-orientation", most of the work I did on-site was doable.

>4. Was it hard to learn Braille?

I'm not fluent in it, but my mobility teacher was more focused on learning necessary phrases and signage recognition. I can't read a page of Braille but my odds of finding the correct bathroom or a fire exit are a lot better than they were at first.

>5. This is sort of a weird question and is personal, not school related, but what do you see? This always interested me. Is it black? Is there nothing?

There's no concrete diagnosis since it stemmed from a pre-natal developmental injury (umbilical cord around the neck, certain functions didn't develop properly but weren't found until after birth). The state: 20/800 in one functioning eye, the opposite eye can sometimes perceive light, deuteranopia (a type of color blindness), my field of vision is \~15 degrees (normally 170), distance is <1 meter. Yet people claim I can't be blind because I can use a modded cellphone...

What it looks like: imagine holding your hand behind your head. What does the hand look like? There's no darkness, there's no weird aura, just the visual equivalent of "No Data Available". You may "know" it's there from a combination of object impermanence and secondary sensory input (rustling hairs, the sound of whooshing air, I dunno) but there's no visual identifier for "hand".

I hope this helps!

1. How has the world changed for you? Obviously sight, one of the 5 senses is now impaired or removed. How has this changed the way you act or think?

Main change for me was sport , at 12 when I was blinded, I was a soccer nerd and this stopped for a few years until I got into blind soccer. I was a very outward gregarious child and was heading for class president type roles. Since then I’m much more in my own head and a very deep thinker. I recovered some of my gregariousness in late teens and now I’m a lecturer so spend a lot of time on my feet talking.

2. If you had an S/O when you went blind how did they react? How about your parents, siblings or any other family?

I was 12 but had gf who didn’t dump me for ages even though she wanted too. Mom died in accident on same day so family rallied round in grief. My sibs are amazing and all adapted quickly to being my eyes.

3. If you were employed at work what happened? Was their a shift in the type of work you did? Did you get fired?

N/a

4. Was it hard to learn Braille?

Nope really easy

5. This is sort of a weird question and is personal, not school related, but what do you see? This always interested me. Is it black? Is there nothing?

I experience the sensation of light in summer but mostly it’s an absence of anything.

For context, my case is a bit unusual. I lost ¼ of my visual field from brain surgery as a very young adult, then as a proper adult (who still doesn’t feel like one :-) ) began to have trouble processing visual information. The processing issue became progressively worse but I kept adapting and remained completely independent and able to work. A couple years ago my ability to process visual information quickly and severely declined. Since it was likely due to brain damage caused by constant seizure activity, my docs insisted on more brain surgery, but unfortunately that only made things worse. I now have no vision on one side (both eyes) and on the other side my brain struggles to make sense of the visual input and is completely overwhelmed by it. My response to your questions will refer to my current situation.

1. It sucks. I am learning but still extremely dependent on others, which has created quite the identity crisis. I can’t do any of my favorite activities because they are very visually intensive and involve heights. I’m forced to sit in the dark listening to podcasts most of the time, which has become very boring. At moments when I have the energy I take full advantage and try to learn and practice techniques that will give me some independence. The things that I am able to do by myself take 10 times as long as they used to and are exhausting. Even the simplest things require concentration.

2. My SO has been with me through the rapid decline and the most recent surgery and has been unbelievably generous with his time and effort taking care of me. I am gradually adjusting to the idea that I really do NEED help and to some degree always will.

3. My job refused to make suitable accommodations that would enable me to continue to work, and they forced me into an indefinite unpaid disability leave. I never heard from them again and eventually resigned when my surgery was planned. So yes I was fired, but in such a way that they could avoid a serious lawsuit. It was especially nasty since I had relocated from another country 8000 miles away to take the job. Now post-surgery I am trying to learn skills that will allow me to work again, though it is unlikely I’ll be able to do the same type of work...

4. I’ve had all kinds of rehab and vocational training with agencies for the blind in both the SF Bay Area and NYC, and no one has ever suggested that I learn Braille (even though I can’t read, aside from a few words with great strain). Everything is focused on tech instead these days.

5. The commenter who described it as what it looks like behind you did an excellent job! That’s always how I described my field cut. However, since my most recent surgery I also see little sparkles where my central field should be. It’s like the vision equivalent of a phantom limb, and it’s extremely intrusive and hard to ignore.