Hello, oi or eh if I want to be as incomplete as the greeting itself, like in the previous few posts.

I saw a link to this site on Reddit, but not very high on google search results I must say, or it isn’t listed at all.

Though I am not a person active a lot on socials, or speaks a lot in blogs or wherever people talk more about themselves, I wish to aid people and researchers who are people too in the understanding of BIID through sharing my personal experiences, as is the purpose of this site.

I will try to stay on point, but every time I try to write about it, I am repulsed by the ugly truths that are inside my mind, ‘the want’ and the ‘where it came from’ in a simple few sentences and somehow unable to take it out, as if it’s Voldemort, he whose name is not to be pronounced, as if the whole world will know when I solidify it on screen. So stay patient and don’t forget to switch on the ‘enjoy reading’ button. I will keep this long.

Memories from childhood

From my youth, I’ve had disabilities on my mind, only subtly, and I regarded it as a curiosity I will grow out of. When lying down in bed, I was fantasizing about all combinations of how you can break a bone. Mind you, I was four. By seven or so, enough life experience to know that limbs can be missing, I started trying out all possible combinations of how limbs can be missing. If you take the area between each joint of a limb, not including fingers, it’d be three. 3⁴ = 81, and also not including hemicorporectomy, but I think it’s nice to have my butt and genitals gone. Those hurt when stomped and make you vulnerable. Though I never settled on something clear. Those activities were only done by myself in my room, never outside of it, and I was always aware of revealing anything to my parents, ‘do not let them see me like this’.

Around the end of elementary school, I had a hyper obsession with ants, and kept a colony as a pet, I could smell the lasius fuliginosis, and didn’t feel the bites of the tapinoma nigerrimum when I laid my hand on their nest when even my thick-skinned father felt their bites. Unfortunately, I was too incapable to keep alive an ant queen of the most common species. After that, the passion died down. Anyway, that was irrelevant.

I think that was a period where I didn’t sim anything, not that I never thought about it, but it honestly had not much to do with wanting limb differences for myself. I am still very interested in how a prosthetic leg would feel like—something to suspend a non-existing part of body mid-air: how would it feel like to feel the ground on your knee or higher? But seeing myself with missing parts didn’t fit, probably some ableism for myself at play; I didn’t want myself and others to see me without limbs, moreover, my limbs are dear to me now, not equally, but important enough for my sport, playing an instrument etc.

So, amputation isn’t what’s on my mind, maybe was.

In some distant memory, probably around 4 years old also, I liked to go to the station to watch trains. There I saw a white stick with a spinning thing, the one holding it was spinning it like a fidget spinner, or that’s a hallucination made by my mind after this long. I didn’t know where it was for, nor do I remember if my mom gave a sensible answer, or if I asked at all, but I simulated many ways how that spinning thing was sticking to the stick. Would it be a magnetic force? Something horizontally interlocking? Could it possibly eject it like a missile? Well, it spoke to me and stuck. Just like that one time a guy jumped on that platform before the train doors when the train was already departing. I meantime, I entertained the idea of a white cane being a good anti-Zerg weapon, like the vacuum cleaner tube and the plunger were to the two kids who saved the world from an alien invasion, but still kept mostly to natural gun-shaped sticks.

I think it’s also worth mentioning that I once saw someone with below knee amputations in a wheelchair on a station, the way the remaining limbs sat over a wheelchair gave me an impression of something: toothpaste. Now I think of it by seeing every amputated limb. Specifically: the blue-white striped one, with or without a third red stripe.

12 years old, and I was visiting new schools to go after graduating elementary, the sun burnt bright and no one was on street except for a visually impaired woman. Now I did know that it meant that the person couldn’t see. I objected about whether it was a good idea to ask her the way, but my parents were like, why not? And she did. I was proper enough as a twelve-year-old to not ask anything, but burning from curiosity inside. I knew, if I were to ask, it’d be awkward; either she wouldn’t answer, or my parents put their hand before my mouth to apologize, or both. I never crossed that boundary before, but it was instinct. From there, I derived that she could most likely see a moderate amount still, and simulated in my mind what her vision could have been. I kind of enjoyed it.

Earlier in my life, anywhere between 3 and 11 years, I encountered blind people in books twice. One was in the laughing cat diary (Yang Hongying), does a lot on disability representation, though on the level for little kids. And that guy was a piano tuner.

There was also about an autistic kid who was a piano savant, and the best friend of the protagonist of another series of the same writer lost an arm, and how the wife of the main cat became deaf after becoming the bell tower cat, and one of the last books where someone that felt similar to the author passed out regularly, narcolepsy--? Didn’t really get that one.

And the other book was a book about a blind girl exploring a city and describing all sounds there were—which my mother commented full of pity that she was so young yet her eyesight had already gone bad. I agreed, both outward and in my head.

I prided my sharp eyesight when everyone else in my classroom of the elementary school had glasses. I was in the minority. And boasted about it, gladly. I remember me being able to read the URL to the google snake game from the laptop of the one before me in freshman year, a shame it led me straight to a normal google search page.

At the elementary schools I was going to, we did have an education day on disabilities, on both. On the weekend one it was just inspiration porn, where I saw the movie of Hellen Keller, a damn spoiled kid that couldn’t talk. I blamed her for a lack of dignity, but even more her parents for lack of discipline. I know the text we had to read, and beside it was an illustration of an activist group of disabled persons, or a group of persons at least—which stays in my memory more as a Lovecraftian creature with predominantly round shapes, which must be the heads of the people in a clair obscure baroque style.

In my real elementary school we had someone with a disability come over. He was paralyzed but rehabilitated enough to stand and walk, but couldn’t feel anything from under his neck. He allowed the kids to pinch him and explained that he would fall over if he closed his eyes. We had an activity where we bound sponges under our shoes to simulate balance issues, where I had none of even when walking on sponges. We also played basketball in wheelchairs. Fun, but not forever.

In the first few years of middle school, I’ve been such an unambitious, wasteful person, I blame myself for succumbing to the social pressure to ‘not care’ and be depressed. A waste of my damn lifetime. I could’ve done a lot, and I would’ve been a lot further in life if I had done so. The coronacrisis was also going on if I give myself excuses, with the social pressure of one of the few not being vaccinated, because my mother didn’t trust, and I was glad to avoid the pain of needles. Yes, I’m pretty young. Back then, BIID was also out of the picture for me.

It came back in the fourth grade, or should I say high school, and this is the hardest part to get on display. A simple sentence, but such a cringeworthy turning point that I might fail plainly writing about it. I was and am an ambitious person who has a lot of different things I want to do on life, hobbies I enjoy but also schoolwork. I’d say mentally stable, happy even and enjoying the possibilities life has to offer.

A natural decline

I do not know whether the issues I have with my eyes caused BIID, or that BIID caused my body and brain to make issues with my eyes. But I started seeing glare, especially at night, little rainbow halos when looking at light. And bright sunlight slowly became painful if I came out of a darker area. I compare it to a coke bottle being opened inside your eyes, the onset of escaping air comes the same way as the pain and the sound lasts a little shorter or the same length. At night now, I see one plus two halved moons, but my vision is still sharp, 20/20 probably, maybe 19/20. By one time I couldn’t read a train sign when a friend could. But certainly not 20/10 anymore, or whatever the measurements were.

I found it shameful that I was so young and my vision was already going backward. I disappointed the standards of my mother with drought and strain added, especially outside. Sunglasses are a no for me, they cut behind my ears, the wind comes into my eyes in a wrong direction when moving at higher speeds, and when taking it off, there’s that phantom sensation of glasses.

Had I not seen the shade, I could have borne the sun. (sorry, Dickinson)

The thing is, I read a novel back then on the internet where the protagonist was blind, but not really because it was a bad webnovel, around the same time I noticed degrading of my vision. Why did my mind linger so long on it, and is it because of my increased attention to my eyes that I noticed, or that it caused astigmatism?

Instead of wanting my vision to be as good as it was, I found myself not disliking this occasional discomfort—how bright everything became was not enjoyable, especially not in situations where using your vision intensely is required. Such as spotting salamanders on an excursion, or yellow cars while biking with your friends, I was never the first to see it, or really having to focus on your homework while your eyes feel like evaporating.

But I clearly could, if I did my best to look through my eyes, or can I? I certainly couldn’t see the road when I had to look at my friend’s phone to choose a pizza in a walk to domino’s at night, when my friend had no problems with it. I couldn’t watch more than one episode on the TV with my friend, because the brightness wasn’t adjustable, but this is more a reaction out of discomfort, not ability.

The why’s

Then there may be more social-cultural-emotional factors at play. Such things as social segregation, rising individualism and hyper inclusivity.

I feel guilty to be interested in a group, especially people who are disabled which can become anyone’s reality any day, and mental disorders is also risky ground. Because, admit it or not, they are less capable of certain tasks, the whole point of disability.—I’m not, I don’t share their experiences, therefore have no business with them. We are worlds apart. ‘fear of co-opting, fetishizing, or disrespecting lived experience,’ and to show others your interest to people outside reach. That’s cringe, man.

It’s different from the colors of people, anyone can be as capable as the other. I am for equality, but the anti-racism movements take it a step further: everything has to be color neutral. So it feels risky to even bring up color to your topic. Am I allowed to see differences between a white and black human? Or Light-pink and brown? I’m scared to state the fact that most fridges are white, but gray ones become more popular, or to say most public trash bins in my country are black, and the ones for dog poop are yellow. And poop is brown to black while the majority of toilets is white. The white toilets flush away the brown poop. Am I instigating something?

And also the focus on more marginalized groups of people. Ethnic minorities, if I may say the word ‘race’, LGBTQ+, Disabilities… It is incredibly hard to speak as part of the majority group. You have to shut up, bow down, make place; because you don’t know anything about their feelings. Especially the majority group themselves shut each other up about it. Or you have to absolutely agree that we have to be nicer, more inclusive and that it’s not good how things are, any nuance and thought and you are branded as uninclusive, xxxphobic, racist etc. Quickly, avert your eyes, no staring, pretend everything is normal and don’t see differences when you are not in power to solve anything.

A more physical factor is the feeling of holding and swinging a cane. Very popular was it in the Victorian era. It’s solid and can be folded to save space, I find umbrellas charming in the same way, and it can open as a kind of shield, but you’re not doing anything with that when it’s not raining. Now I know the internal mechanics of a white cane, I couldn’t help but think of a three sections staff in martial arts—you know… or how hard you must rotate it to have enough centrifugal force to make the ends fly off, or compare it to a tent stick, something with the same jointedness and folding in collapsed state and a pleasant clicking sound when unfolding it. Though I’m not a delinquent or too timid, and no aggression issues, I know for a fact that I feel more secure having something you can pack a hit with, or make the air whoosh. It feels right.

Or a feeling of not being up to standards. Everything is something I technically could do, but I just haven’t worked hard enough, or trained enough, or am too dumb and lazy that I cannot do anything that is asked of me or that I want to do. The detriment of praising a kid to be a talent and being the top of the class, when my limitations become more clear as I age, and I learnt a lifetime is not enough to take the time and do everything that I want to. If they had said ‘you don’t matter’ from the beginning, I’d be writing here about a whole different childhood trauma, perhaps for the better. We’re still functioning humans, aren’t we?

I do not quite recognize mental limitations; they are vague and all can perhaps just be a matter that you’re not doing your best enough. There’s a fine line between ‘to want’ and ‘to need’. There are the basic physical needs: food, sleep, shelter. But mental needs are a lot more complex and vague. Needs and wants depend on your goal: if your want is to merely stay alive, then your needs are as basic as previously mentioned. After achieving that, wants become more complex, and with that, the needs to achieve the wants. If you want to be dead, there also a need to go through that achieves the want. And if you want to truly understand something, the need for lived experience is crucial, bet even then not a guarantee that you will understand what you’ve lived.

The amount of open doors in life and this existential vagueness asks for a physical clarity, maybe I want to have something that shuts some doors, things that isn’t like ‘I haven’t trained my muscles enough’ or ‘I am too dumb, or lazy to think’, but things that pose a challenge because I simply cannot. Ironically, I am willing to give the clarity of sight for this.

Also, the increasing need to be ‘your unique self’, rising individualism at its best; a ‘want’ that arises from having enough in life to worry about more than just living. The motto nowadays to ‘be yourself’ suggests to ‘not be like the crowd’. It is a kind of culture to concern yourself with your image you present to others under the guise of ‘wanting to be yourself’, while also ‘wanting to belong’. To concern about yourself and what you are to others is all a certain vanity, deep and superfluous simultaneously.

I don’t think people can truly be themselves toward others, only make choices in presentation: a well-crafted mask that reflects their values and feelings the best. For me, to be myself is to be a persona I am most comfortable playing as: a bunch of collected tropes meticulously combined. From there may also stem the popularity of reducing your self-description to a bunch of labels.

In this image-based society, some may pretend not to care about the perception of themselves to others, while some are really caring about appearances and they know it. Why? It feels good for their confidence to be perceived as the person they want to be.

Lastly, it could be rebellion. To prove young age does not mean good eyesight, that there are different things than natural decline. And to disprove my mother’s spirituality after she threw away all my cacti, claiming that keeping them at home was bad for your eyes, because the ‘qi’ that radiated from it was prickly, according to Chinese internet master number x, which she blindly follows his teachings of. Perhaps after that incident I wished to, more than before.

Negotiation

At first I wanted to be blind. This wish instantly took away my discomfort in the dark, a scared little kid I was. My cat also contributed, which I got after years of negotiation, as I could blame all random stomps, creaks and sounds of running water at home in the night to my cat. The cacti weren’t gone yet.

After a few years of telling myself that I wouldn’t want that, and negotiating pros and cons I now allow myself to see. There’s a lot that goes with vision. I like to make art, I like to read, my poor time with Wikipedia articles and all books I wish to read sometime, I am not bad at reading expressions and I can say a lot with an awkward stare. With my friends, a smile says a lot and with my best friend, I have some made-up sign language which I don’t always understand. I am aware of the visual communication I am giving up.

Reading and art, however, weren’t things I could just drop. I play piano, as a good Asian should, classically trained to read from sheet music, and I am good at that. A lot of pieces I can randomly try to play, but the downside is that because reading goes with such ease, learning things by heart goes slow, as does improvising.

Giving up vision would impact my music level—long jumps I need visual precision of and the ease of sight reading, but it’d give me time to focus on smaller sections until it’s all in my muscle memory and know by heart, instead of being distracted by other pieces that I leave unfinished. I might also learn to improvise better, or more time to learn another instrument, like a violin or flute. (There I go again in the width).

The fact stands that the brightness outside, added with eyestrain, the moving people and social-visual requirements for communication are things that I sometimes do not want to do. Especially in this society, everything goes with vision. If outside and you’re literally seeing purple circles spinning around your vision, paired with pain in the upper-eyelid muscle, you still have to suck it up and look.

I feel self-conscious when I turn an ear toward someone instead of looking at them in noisy places to focus on what they’re saying. To them, I might just seem distracted. I find it annoying that people expect me to drop my task at hand to turn towards them when talking, or to think about where to rest my eyes—certainly not against a person. That’s illegal. It’s also awkward to close your eyes a little too long in public.

Last thing is that I find myself unable to partake in discussions about appearances; I have no opinion on looks or the clothes others wear. I have an opinion on clothes, but will not find a person more or less because of it, also backtracking to hyper-inclusivity and a fear of expressing perceptions of other people’s appearances.

I wish to have as much vision to not being obliged to see through the eyes at all times, but still do those tasks I enjoy, even with added difficulty. I am willing to give up my understanding of facial expressions, body language and some independent navigation up for it.

Acts and thoughts

There’s not a lot of chance for pretending; I don’t live alone. It’s risky to navigate home with eyes closed, because any time there may be a human in the room and they will see you acting weird. The worst thing: the cat is watching and in my room there really isn’t a lot of exploring to do.

So I researched eyes more than I did with ants, because I had no laptop back then. A lot of dumb ways to go blind and all that can go wrong in the eye and brain. This interest makes it engaging to force yourself reading scientific articles with more than 50% of text being source mentions, also research in O&M, daily struggles and assistive tech, and it sticks, the big lines at least, as everything can be infinitely more niche.

When I go on a trip, or an event, I oftentimes think of all that can go wrong to ruin my eyesight. I know exactly how my optic nerves need to be cut to achieve optimal dismal eyesight. At new year, when I looked at fireworks, maybe I hoped to have some hot ashes fall straight at me and to have it be ‘a damn shame’ if it ruined my sight. The wind stood to me at new year’s eve, and there was actually some ash that fell from the sky in my eye. It burnt for three days straight, and everything is fine.

With this knowledge now, I might have a fun time to study ophthalmology later and put this interest in good use.

I am not someone to take action to self-mutilation. People can much easier blame themselves for a choice compared to when they are forced to make the best out of it because they had no choice.

I don’t want to say “I chose this”, but I want to say without guilt or lies: “Shit happens.”

If it were to happen

Most of time, in discussions with friends and strangers, I don’t have any complaints or annoyances toward others, those that others seem to have endless of. I’d swallow it subconsciously, even if I did. Other people speak much more freely about their body and feelings. I have no right or reason to complain. I like myself, but dislike that fact that I like myself, and that is what I dislike about myself, because society seems to bond more through complaining and disdaining.

If I were to lose vision, I would be someone to hide it until the very end, to my parents at least—just imagining their care and concern gives me an icky feeling. I wouldn’t dare complain to them. My friends might know, but I’ve never been able to speak out loud about myself if I was unwell. I’d be someone not to take action until the world shows me that it might be a good decision to get some support.

It might be ashamed that I cannot do certain things, or frustrated, or both, but probably not someone who thinks of suicide after getting a disability. I would be someone who would try to get life back to normalcy as quick as possible and use the free space to enhance my sense of humor, and multiply the ways to laugh at myself and life.

If I were to lose vision, maybe I will stop getting hit every time my friend sees a yellow car, or will appreciate it more when my friend keeps doing so.

Hello,

 I’m [name], 17 y/o, aro/ace, cis-gender only because my body is as such, I do not know what people mean by feeling a gender, cis-sex I guess, self-diagnosed ASD, never spoke to a therapist, multi-cultural background, some more tags for trauma, citizenship number [we are numbered], slightly mocking. My BIID is vision, do not know why I am feeling, only that I am feeling, how weird, my want might be a need, because a feeling without cause may as well not exist, therefore unreal until explanation. I am a human and I stand for nothing.

If I upset anyone, I apologize for making them feel, and questions are welcome. Digital fists too.