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Sometimes I feel very detached, my journey seems different… I wish I could share it broadly. #Blindness
So, as anyone who’ve seen my posts know, I’m autistic, lv2, and legally blind. I frequently go to a blind foundation, called Dorina Nowill Foundation for the Blind, translating the name of course. And I feel I have a very different reality than my other blind peers, or autistic people also feels very detaching sometimes, as I’m female and grew up where all this huge info data we have didn’t exist. But my focus this time is on blindness.
Well I was born with congenital cataracts, in a technical view I was born legally blind already, but they were partial cataracts so I had surgery at 3yo. My mum had to battle this on her own, nobody was with her and giving her the necessary support on subjecting her toddler to a surgery that could be very good for me but also could go downhill, but she fought, she went through, she tried.
So my I lived childhood and adolescence as as someone with low vision, but had I heard about that terminology? Obviously not. So I grew up, feeling different as I dealt with undiagnosed autism and low vision, I learned to adapt, I learned to read even if I couldn’t actually see the words or individual letters. I learned to look at something and thanks to being very detail conscious I would find patterns that told me what that colourful stain should be, a tree, a flower, a building, whatever.
So in 2021 I discovered I was low vision, tho a PE teacher did tell me I’d probably be able to join the Paralympics, being autistic meant I didn’t notice the implication of her statement so it slept through my mind without raising any flags. But at the same time, November 2021 I got legally blind, in one night I could see a lot, the next day everything was very different and weird, and that’s when a doctor told me “you’re legally blind”. For context that’s not very spoken in my country, Brazil, very few people know what “legally blind” means.
Anyway, that happened, but I still knew how to adapt, I’ve never had a lot of support to know stuff, I learned to catch the bus without being able to see it properly by 10 years old, and what would happen would be that I’d give the signal to the bus when it was very close to me, and lots of bus drivers would be mad at me for stopping them so suddenly.
So anyway I learned to adapt with this new form of sight (or lack of it), I learned to read with very big font for when I’m not in the mood to use screen reader, in reality I can’t see anything I’m typing right now, but with effort I make out the words. I learned how to use screen readers on my own, I learned how to use a white cane on my own, I learned how to go places on my own, even braille I’ve learned mostly on my own around September 2021.
On 2022 I tried reaching the blind foundation, they denied me, they said that for being autistic they wouldn’t have the technical competence to deal if I had any sort of meltdown. So I learned to navigate even more on my own! I reached to them a second time on 2023, explained my case, they now did let me join, and what happened was that I didn’t have much to tell about my process to the psychologist, and my O&M classes were only 4 classes that basically contained the instructor telling me to walk slower, I didn’t need it, I took them as a formality to apply for a guide dog and have more chance on acceptance.
So I reached them a third time in the end of 2024 telling I really needed some psychological help, because at that moment I was having psychological demands on my blindness, and I needed this support, and started with them now in the middle of 2025.
It’s still very different for me, it’s like I’m not processing the grief most people have when losing sight, because when I needed to process that grief I had no professional support at all. And up until about 4 weeks ago, I still didn’t know why I got legally blind all of a sudden, so it was hard to tell the psychologist what affected me without even knowing what was my condition.
I give that impression that I’m very well prepared, I already know how to use the phone, the computer, the cane, the public transport, get my documents, everything, so what exactly am I struggling with?
I opened myself once, and told her, I know I’m well off already, but that’s not okay for me, I’m not happy, I’m not comfortable, I don’t even know fow how long I will still be able to see, I feel detached, I feel alien, people think I’m so ok on my own that they don’t notice how lonely I feel, how when someone compliments how strong and independent I am I feel that “yeah, but that’s because I don’t have someone to be always with me, and asking family members sometimes would be taken as a nuisance”.
I still feel it’s a bit hard to express my troubles when it comes to blindness, but now my psychologist know how to approach me, and I got the diagnosis so I have something to work on top of. Because now I feel more secure when thinking about “what if I go totally blind?”.
I’d be so grateful if I could openly express about it in my social media and other places what means to be legally blind and what means to learn to adapt when you don’t know you can get accommodations for example. Perhaps one day it will be possible.
Only I know how I see, what I see and now I also know how much I don’t, because I got a very strong cold and my brain went like “I’m so sorry eyes, but I need to fight this virus, so try to get by” and I couldn’t even read the biggest font I’d try to get. Also only I know what’s the feeling of being around my blind peers and not feeling like them. Not complaining that I’m blind, like a lot of people do, only I know what means to get excited to know my train is arriving at the tube when the employee giving me assistance hasn’t seen it yet. Or how excited I feel every time my boyfriend tries to come behind me in secret and without even looking at him I just say “Heya” and he gets so disappointed he can’t be sneaky, because it’s not that I hear him arriving, but I notice some sound waves being blocked, so I know there’s something there. These abilities are very exciting and fun to have. But doesn’t take away the sadness of living in a very ableist world. Not getting a job because they think I’m useless without sight, and the list goes on.
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