Ask me anything about blindness.

I had this fleeting but reoccurring thought for quite some time already, to make a post where I’d give people an opportunity to ask questions about all sorts of things to do with what it’s like to be blind. My Mum and some of my penfriends also strongly encouraged me to do this, but I’ve always felt like I’m not really the best person to do such a thing. I felt that if I was to answer such questions, then I would be kind of representing the whole big community of blind people, and I am not really a very typical representative of it, or at least not in all aspects, so I was afraid that it could be potentially harmful to the community at large if people were to consider my answers something of a general standard for blind people, or that in order not to be harmful, I’d have to constantly explain in which ways am I different and try to answer the questions from as broad a perspective as possible, rather than just my own, which I feared I wouldn’t always be able to do in a competent way. For example, I don’t live on my own, but there are a lot of blind people who do, and I was afraid that by hearing that I do not, people are going to assume that no blind people do and that they cannot.

But I guess that over these almost four years that I’ve had this blog, I’ve finally realised that I have no obligation to represent the blind community if I don’t feel like it, just because I am part of it. I can just represent myself as an individual. If I don’t believe that all sighted folks like K-pop just because Sofi does, why should sighted people believe that all blind people read Braille based solely on the fact that I do? I think I must have gotten the idea from school, where one of our staff told us that we need to be able to eat with knife and fork so that sighted people won’t think that all blind people are not able to eat this way. 😀

In general, I see that people tend to be either very in-your-face or very fearful of asking disabled people and their families any questions pertaining to the disability. As much as the in-your-face attitude is bad, because I don’t live to answer people’s questions and I may choose not to (not because they hurt my feelings or anything but just because I don’t have to, and even if disability isn’t a sensitive topic for me, it’s still generally quite personal), the fearful attitude, though very often coming from good intentions of not wanting to offend someone, is just as bad because the brain doesn’t like emptiness, so in place of the unanswered questions you create your own conclusions, which might be incorrect, or even quite harmful.

So that is why, in the end, I decided to do this. Perhaps you’re a regular reader and you’ve always wanted to know something but were afraid to ask or simply had no opportunity to do so. Or you’re a total newbie here and just want to know what it’s like being blind. That’s what this post is for. Ask me your questions in the comments and I’ll reply there, or if any questions will require some particularly detailed answer or I decide it could be interesting to expand on I might do a separate post on it.

As I said, I’m not going to be answering collectively as a blind people’s spokesperson or anything, but rather from my own perspective, so what you’ll be getting here is simply one Bibiel’s personal experience. Some bits of my blindness experience may be the same for the majority of blind people, others not necessarily. Still, I know a fair bit about blindness and a lot of blind or visually impaired people, so if you have a more general question I’ll also try to answer it as best I can, even if it may not always be exhaustive. As I’m blind since birth, I’m really not easily offended or hurt when it comes to blindness questions, as I have no idea what it’s like to see, haven’t lost my sight in any traumatic circumstances, and therefore I have a distance to it.

Oh, and I’m going for a summer trip on Friday/Saturday for at least a week, so if you ask me anything during that time you might need to wait some time for a reply, as I’ve no idea if I’ll be able to reply on the go and how regularly.

16 thoughts on “Ask me anything about blindness.”

  1. What a great way to raise awareness!! I know what you mean about fearing you’re not representative. With my mental illness, I’m not sure I’m representative either. I only know one person who has my diagnosis, and I’ve only interacted with her (online) a few times. Not often enough to know how much we have in common. But the fact that my friendship with her never took off indicates that there might not be a whole lot in common there. It can be hard to represent!!

    Here are my fun questions!

    1) Do you get upset when blog posts have photos and you can’t see them? (I’ve tried adding text to my photos, but I’m not very tech savvy apparently, and it messes up the image, so I gave up… sorry!)

    2) Do you know what you look like?

    3) Do you spend countless hours wondering what the world and everything around you looks like, or do you believe or lean toward whatever you imagine things to look like?

    4) Does being blind since birth cause you to have less body shame since you can’t know what you look like naked? I.e., would you go to the bathroom at home with the door open, or that sort of thing?

    5) Would it be harder for someone my age (or whatever) to suddenly go blind than it would be to be born blind? Too hard to adjust, but easier when you’re growing up?

    6) Do you have fantasies or longings to see for just five minutes?

    7) If you could suddenly see, like, wow, it’s a miracle, do you fear that humans would look like aliens to you, and you’d be like, oh no, I was abducted!?

    8) Are you fearful of walking around and running into anything? Both inside and outside?

    9) Do you need to have someone with you if you go someplace like a store?

    I hope these questions aren’t offensive or too idiotic!! Thanks for letting us ask questions!!

    Liked by 2 people

    1. When you upload pictures to WordPress, there’s a box where you can enter the “alt text” for the image. There you can enter a description, and screen readers will pick up that information, but it doesn’t change anything about how the image is displayed.

      Liked by 2 people

    2. I would think that such a thing as friendship and how much you two have in common wouldn’t really depend on whether you both are representative or not of your diagnosis. 🙂
      Hahah, these are interesting questions, and not at all offensive.
      1. Not really, I think I’ve gotten used to a lot of images not being accessible and usually it tends to be more of a surprise to me when some image is accessible than when it is not. I’m normally not very peeved about it, unless for some reason I really really really want to know or simply need to know what is on a specific pic and what it looks like, but in such case a brief alt text hardly ever is descriptive enough to fully quench my curiosity. Thankfully, image recognition technology is developing, so if an image has no alt text whatsoever, I can give it to any of the OCR apps that I have on my iPhone and it’ll process it and give me some kind of description, sometimes more accurate, and sometimes less. If I’m not sure I can compare the descriptions with a couple different tools and sometimes that gives me a more clear idea of what that might be. Since about a year ago, iPhones themselves have this feature built-in and images are automatically recognised as long as you have the built-in Apple’s screen reader turned on. It often thinks that Misha is an ostrich, or a “grey fox”, for some reason. 😀 I seriously think that adding alternative texts to photos should be a lot easier and more intuitive, so that not tech savvy people can do it easily. As it is, many don’t even know what an alt text is for.
      2. I think so. I may not know some details or have them wrong, but generally, over the years you hear a lot of things about how you look from different people, a lot is also easy to conclude. Also, I guess people don’t learn about their appearance solely from looking at themselves, but simply being themselves, plus touch, proprioception etc.
      3. Hm, not really. I’ve never experienced any visuals, so I rarely try to imagine things in a visual way as it’s quite difficult if not impossible since I have literally no experience of what it’s like to see anything. If I imagine something I just focus on everything else. I do have some idea about what colours look like, which is definitely acquired and I really don’t know where I got it from, but even though I can describe colours, including many shades, pretty accurately apparently, and know without memorising which fit with which, my inner world doesn’t really include colours. There’s such a thing, I believe it’s called compensation but I may have mixed that up, where when you don’t know what something looks like, you kind of automatically fill it with something that your brain generates and base your idea on this. That’s naturally a huge thing when you don’t have a sense and it’s not even something you control, it just happens on its own, so I don’t really have to put conscious effort to imagine things that I don’t know what they look like. For me specifically, synaesthesia plays a big role in whatever my brain fills the blanks with, even though oftentimes it’s not very logical because synaesthesia is not logical. I don’t even know how much sense that explanation makes but I guess I can’t describe this better. 😀
      4. No. I don’t think body shame is a sight thing, or if so then not entirely. I would guess it’s something that we sort of acquire over time. Sighted toddlers know what they look like naked as in visually, but they only acquire the shame later on because they realise no one runs around naked, and their parents instill in them the conviction that it’s wrong to be naked around other people. Blind people by nature definitely don’t tend to care a lot about their appearance and it only comes with time as they begin to realise that it’s important for other people and has a lot of influence on a lot of things, but I don’t think blindness has a lot of connection with body shame. I know congenitally blind people with things like anorexia, bulimia and body dysmorphia, so I highly doubt there’s a link. So no, I don’t feel comfortable being naked around other people, but, interestingly, some people lose their body shame around me. Like Sofi has no problem letting me in the bathroom when she’s having a bath, or when there’s only me and my Dad at home he’ll always do his business with the door open. 😀
      5. Yes, it would definitely be harder to adjust emotionally, it’s a huge loss. I mean, people get the majority of their sensory input from sight, so, it must be insanely scary when you suddenly don’t have that to rely on! Usually when people go legally blind later on in life there’s some major thing going on, like they had an accident, or have a progressive condition, which are all quite traumatic things. And, this is just my assumption, but I’d think they must feel badly sensorily deprived for some time afterwards, and that’s a horrible state to be in. Your whole life is upside down. You can’t even read like you used to anymore, only listen, or at least I don’t know any person who lost their sight later on that would be able to learn Braille well enough that they’d actually use this ability in daily life. But, on the other hand, it’s easier to adjust practically. A person who lost their sight later in life has memories of how things look like so it’s easier for them to cope in daily life once they can accept their loss, they usually have it easier with things like navigating and it’s easier for them to be more independent.
      6. Yeah. Not such that I’d be truly broken-hearted that I can’t see them or anything, but there are certainly things that I’d like to see. Misha is one of them. Everybody tells me that it’s a real pity that I can’t see him because he’s even more beautiful visually. Sometimes when I get really frustrated with something, like even that odd pic that I really want to know what’s on it not having an alt text I’ll think that I wish I could just see it, but it’s just a fleeting thing.
      7. Haha, actually, yes. That’s one of the reasons why I don’t think I’d like to be able to see at this point in my life. I think this would be a major sensory overwhelm and, like, I wouldn’t be able to differentiate between different things that I’d see, tell one from the other, filter things out etc. Or that I completely wouldn’t know how to interpret all the stimuli. And it seems like a lot of blind people feel this way, and that it actually makes some sense, because apparently it’s a thing that the brain can only learn to see until some point when you’re a kid/adolescent and then it’s no longer possible. I’ve read about a guy I guess from India who had some eyes surgery as a middle-aged adult that enabled him to see, except he couldn’t really make much use of it, because he wasn’t able to figure out with only the sight what something is. If he touched it or had some other cues then it was easier but otherwise he couldn’t tell the difference between one human being and another or really interpret anything. He was really depressed and ended up shielding his eyes so that he wouldn’t be too overwhelmed with all the indeciferable visuals, and wanted the old state back except it wasn’t possible. A person who works in the visual impairment field also once told me about another guy who had his eye condition cured and was able to see, and then he committed suicide because the overwhelm was so unbearable.
      8. Inside not so much, unless I’m really unfamiliar with the place and it feels unpredictable and intimidating, but outside a bit more. It’s not a huge problem for me because I’ve gotten used to this and also there’s such a thing… let me check how it’s called in English… I guess they call it facial vision? In Poland we literally call it a sense of obstacles. This is something that everyone has but naturally blind people pay a lot more attention to it because it’s useful. It’s a sort of pressure feeling that you get on your face, like cheeks or forehead, when you’re a couple metres from something like a tree, or a wall, or a car, or even a person standing in one place, basically something that’s high enough that you can feel it this way. The higher it is the sooner and more intensely you’ll feel it. So that really helps although accidents still happen, plus you won’t “feel” things like stairs, or even a low table standing in the way. What I’m more fearful of though, especially outside, is falling, which is mostly due to my crappy balance, although blindness definitely also contributes to its crappiness.
      9. Yup. I don’t really feel very secure going places myself, I find it difficult to get around or even memorise routes and I get lost super easily. It’s freakishly difficult for me to imagine things in space, like, the distances between them and such and then apply this in practice somehow. I had mobility training at school for ten years, including using a white cane, but I’ve never managed to learn to get around very efficiently, not to mention things like public transport. I think it’s all so tricky for me because of other things getting in the way like the balance, not just blindness alone. Besides, if we’re talking about stores, I think it’s always good to have someone trusted with you so that shopping goes faster and you don’t have to feel around every single thing to find what you need, or scan the bar code on every single thing to recognise what this is. Not to mention clothes shopping. That’s why I shop online whenever it’s possible.
      Hope that gives you some idea. 🙂

      Liked by 2 people

      1. Those are brilliant answers!! I was so saddened about people getting sight later in life, and I can imagine the overload! It’s heartbreaking to me that one person committed suicide over it!! Yikes! Be careful what you wish for! I’d never even thought about sensory overload! Oh! There’s a movie I watched about that once. It was sort of horror/suspense. Really interesting movie. I can’t recall the name of it!

        That’s hilarious that your dad will use the restroom with you around! 😀 I hadn’t thought of that, but it makes me laugh! Why not?

        I’m sad that you can’t get around well out in public, and I can intuitively relate. Since you and I have such bizarrely similar brain chemistry and talents, this is another example of that: I’m also not good at visual-spatial knowledge, so if I were blind, I’d have no clue how far I just walked from the store, for example.

        I’ve never heard of facial vision and I guess I’ve never experienced it? It’s seriously like people born blind develop special powers! Righteous!

        Yes, Misha is a gorgeous kitty!! Very pretty pussycat. I wish you could see him too! Well, except for the accompanying sensory overload and all that! 😮

        Why couldn’t the people who could see now just wear blindfolds to reverse the sight? Is that a too simplistic assumption on my end?

        I have another question! Forgot it earlier! Do you see in dreams? And if so, do you see colors in dreams? Thanks for your fun answers!!

        Liked by 2 people

    3. Wow, I can totally see how that would be a good inspiration theme for a horror movie. 😀
      Nooo, I don’t think a blindfold would help these people. Well, I can’t say for others because even when people are legally blind they all see or don’t see different things, but if I was to start to see, I would not be able to go back to the current state with just wearing a blindfold. This because, as it is, I see nothing, as abstractive as it may sound to you. 😀 It’s not darkness, or blackness, there’s just nothing. People have a real problem to even accept or believe that, because a sighted person can’t just see nothing! 😀 I guess for people it’s just as illogical as thinking nothing is for me. I have bilateral optic nerve hypoplasia and my optic nerves are totally non-functional, and I once heard a good explanation of someone who also has the same condition, his job is to spread awareness about blindness and this is how he explains to people how it’s possible for him to see nothing. Say you have an optic nerve that’s disconnected from everything, just swimming in formalin or whatever, and you decide to attach something to it, like your finger. Will your finger start to see black? 😀
      Oooh I was waiting for that question! 😀 People always ask me that, and I don’t really know why. I mean, for sighted people, dreams aren’t all about sight, are they? At least my Mum says they’re not. So, no, I don’t see in dreams, because my brain has no resources to “see from”. 😀 There are all the other senses, but what’s primarily involved in dreams at least for me, it’s the emotions. Sometimes when I wake up the sensory stuff itself makes no sense, or isn’t quite so interesting without the emotions that drive everything. A lot of my dreams, actually, are a lot more emotion-based than sensory-based and the sensory stuff is just the background. Speaking of blindness and dreams though, there was apparently some study that showed that blind people have more nightmares on average than sighted people, which I can totally relate to.

      Liked by 2 people

      1. Fascinating all around!! Great answers!! You make a really good point. Those of us who see have our senses of self centered at our eyes. People who don’t see (and never have) don’t have that reference for who they are! Oh my how interesting! So then I must also ask, where do you feel centered inside your body?

        I’m sad blind people have more nightmares! I have a lot too!! Ugh!!

        This is fun!! YAY!!

        Liked by 2 people

    4. Huh, that’s an interesting question, guess I’ve never even thought about it where I’m centered… I’m inclined to say the brain, except cognition/thinking isn’t even a sense. But it’s like, that’s where the most happens for me. Obviously I rely on hearing and touch a lot but I can’t say that any of those senses is dominant for me. And it’s the brain where they connect, plus that’s where I get all my synaesthetic experiences from, so that feels like the most adequate answer, haha.

      Liked by 3 people

  2. I mostly curious about the tech you use. When you’re writing posts, do you dictate them, type them in Braille, or some other way? And to read posts, do you listen to them converted to speech, or read them in Braille?

    Liked by 2 people

    1. With writing posts, I just touch type them on the computer, that is the typical computer keyboard, as I find that the fastest. Unless I occasionally write from the phone, in which case I usually use my Braille-Sense notetaker which serves as both a Bluetooth keyboard and a Braille display, and it has an 8-key Braille keyboard.
      As for reading, I tend to alternate a lot between listening to a screen reader and reading myself in Braille, it depends on a lot of things. I process things a lot better when reading than listening, so if I’m reading something that I feel really requires a lot of attention, like some a post in Swedish or something that I really want to absorb properly, then I’ll go with Braille. But speech synthesis can be faster than me, so if I want to read something quickly, or, say, am doing something else with my hands, or don’t feel like wasting the time for loading the post on the Braille-Sense or connecting it to the computer (it’s usually connected to the iPhone all the time as I need it more for that), then I’ll go with the screen reader.

      Liked by 2 people

  3. I believe that it’s important for each and every one of us to remember that we can only speak for ourselves and not for a group of similar others. I believe you are brave to share yourself openly. My question is: How has being blind helped you in finding yourself on your journey?

    Liked by 3 people

    1. Oh, that’s really difficult to tell, actually… I think to be able to answer this question accurately, I would need to have some crystal ball and find out what other aspects of my life/me would be different if I weren’t born blind. I mean, to what extent, for example, my personality would be different, or not different, without it.
      As it is though, honestly, I don’t think that blindness has been particularly helpful for me on this journey. Neither has it been particularly unhelpful. I just don’t think it’s a significant factor here, not for me, anyway, or not in an obvious way.
      I know many people, even people who deal with the blind quite a lot, who have a strong belief that, in general, blind people are somewhat privileged when it comes to self-development, living according to your values, spirituality/religiousness, being a good person, because we “suffer” more, and they think it kind of automatically makes you better, that it’s easier for us because we don’t have all the distractions that sighted people have that draw them away from what’s truly meaningful or valuable for them, so finding yourself should be easier. In my personal experience, that is definitely not the case. Sure, I’m not distracted by all the visual/graphic stuff, and this is the most present and overflowing in the current world, but I still am often distracted by things involving other senses, or simply intellect/cognition, just as effectively. We are just as prone, in general, for wasting time on things, just as prone to judging, even though we don’t judge people for how they look. In fact, I believe that judginess is one of my biggest flaws although I’ve been working on it a lot the last few years.

      Liked by 2 people

      1. Sounds like you’re deep in your journey and figuring things out. I, too, am still figuring out how my difference is fit for me without imagining another me. Best wishes for the continuation of your journey and thank you for the inspiration you contribute.

        Liked by 2 people

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