Blindness

Hi, my name is Dylan Rothbein. I'm here because I'm always looking for support and I care about community and disability. I'm currently a rabbinical student and a musician and filmmaker. I have been and activist and disability studies scholar for 10 years. I have a BA in history and an MBA in music business.
#MightyTogether #BipolarDisorder #Migraine #LymeDisease #CerebralPalsy #EhlersDanlosSyndrome #Epilepsy #PTSD #Dyslexia #Blindness

Have you ever expressed you’re a level 2 support autistic person and people would invalidate you because “you came to this appointment by yourself”?

People think of autistic people as two sides of a coin, like it’s black and white, but the “scientific” name already says ‘spectrum’. And that spectrum isn’t only on some classic functional tasks, not only that, but autism usually comes with other comorbidities, like me who has a personality disorder, probably undiagnosed ADHD, and many body structural differences that might be related, such as dispraxia. And my luck is just right for me to also be born with congenital cataracts, an eye disease that also loves to come with something else, such as glaucoma (not my case) or in my case, retinal dystrophy, that might be retinitis pigmentosa, I still don’t know which type of dystrophy I have.

So even trying to put autism into three categories, you still have a whole spectrum on each, the only way I see that makes this classification possible is the wording:
1. Support Needs
2. Substantial Support Needs
3, Constant Substantial Support Needs

This wording makes it vague enough to make a classification possible, and due to people viewing autism as black and white, the support needs level 2 ends up being the one people often forget, invalidate and misunderstand.

I’m a type of person who’ve been through forced independence, I started catching busses by myself at 10 when I started going to school by bus after having gone through very aggressive bullying on the school van that would get me to school. Autism wasn’t so spoken about, much less autism on females assigned people, so I had to learn a lot of social cues, communication, non-verbal communication skills (tho I’m still terrible at them), social norms, expressiveness and knowing how to pick my words when talking. It’s exhausting, I suffer from autistic burnout for years, and one of the causes is the constant task of knowing how to articulate my needs, or bend myself to be flexible, despite having cognitive rigidity, because others wouldn’t do it, even being neurotypicals. So at first glance people can’t realise I’m on the level 2 category, because my adapting skills are very sharp and I adapt fast to new situations. That’s why I pointed this to blindness, because I got blind, and I adapted. I had no one to teach me how to use a cane so I taught myself. I’m still waiting for the daily activities rehab part from the blind foundation but I just can’t stop my life to sit and wait. I want to learn how to make my own make up, and I basically started making my own make up already, I need to learn the techniques for that, but while I wait, I just do my best to be able to do something.

I might not show so much support needs on socialising, learning communication skills and articulation, because I adapted. But if I get to a meltdown, there’s nothing that will make myself snap out of it, I need intervention from people to help me and avoid that I put myself at risk. Usually after a meltdown I have a shutdown too, so I just fall asleep without much control over it.
To catch the tube by myself I need to listen to music so I keep calm, and nowadays there’s a musical I listen to absolutely every time I need to go out, that helps me self regulate. I stim a lot and often get censored by people close to me, and I have to remind them that I need to make constant and repetitive movements when I’m overwhelmed. But this is not where it ends.
When it comes to my body, I don’t know when I need to pee unless I’m urgently needing it, so UTIs are basically my daily companions. I can’t feel satisfied after eating, so sometimes I need someone to give me a hint that I’m not eating in a healthy way. I don’t like most of the stuff that can make you gain weight but I’m obese because other factors. I have insanely high tolerance to pain, I might break a bone, and it happened before, and not know it, because well it might hurt but it’s too little to actually give me some concern. At the same time I am extremely sensible to my internal organs, so I know EXACTLY where I feel what I feel. If I feel chest pain I won’t jump to conclusions that I might be having a heart attack because I know if it’s a pain on the boobs, the lungs, the heart, the esophagus, etc. it even got me confused lately because I’m feeling a pain on a place I don’t know which organ could even be there to ache, other than my intestines, but the pain doesn’t give the vibe of intestinal cramps. So all that already show how much substantial support I need just for functioning a bit. But I also need support when it comes to daily tasks.

I hashed depression in here too because of this. Me getting depressed makes me not take care of my house and myself, and I do have very severe depression, that can be very crippling sometimes. And also have to deal with PDA. So trying to humiliate me, or repeat many times to me that my house needs cleaning actually makes me not clean it. My mum had to find the right words and empathy to make me start reacting and taking care of myself and everything. But I still need this support. Sometimes if I try giving myself rules, I don’t really follow them, I just feel frustrated when I do something out of the pattern I usually follow and then the repercussion is that I don’t know where I left something. And this is why I hashed blindness too. Because being blind means I have to be even more strict with organising routines so I know where everything is, and can find it later. But without clear instructions of what I have to do… I just don’t know how to. Yes I adapt, yes I try my best, yes I do without waiting, but I’m still not able to find directions without someone to direct me. It might sound silly, but my support needs actually makes me need direction from a third person. So I want so bad to get to the daily activities habilitation so I can learn how to organise stuff properly.

This is a bit frustrating for me to express, because I don’t want to use my depression, autism or blindness as crutches to justify a messy house. But I know that I need someone to direct me on some tasks, or I just can’t do it myself. And I wish people could understand how that is a need, and not me talking BS. Even if it’s not a classic need from a person with substantial support needs, it still is my need, just like there are people with ASD that can’t cross a street by themselves. It’s a need, and instead of invalidation and ableism, the world would be better if only everyone’s needs would be respected.

So I’m integrated with the job hunting part of the blind foundation. The name in English is Dorina Nowill Foundation for the Blind. And it’s frustrating.
In the past they’d only attend blind people, but nowadays they’re way more flexible, attending people like me, autistic, or people with some level of hearing loss and blind, or low vision folks. So context given…
The job hunting department isn’t at fault, but they send us some positions up for hire every week. The only one I could apply for is still open and apparently I might be the only one who applied for that. But these past weeks a lot of the positions are only accepting low vision people, even for positions that blind people would do just fine. I feel sad about it, even in the place that originally was meant for blind people alone and now is open to all visually impaired folks, we can’t have all the inclusion and equity if we’re fully blind. Or just considered blind at all, like me who’s legally blind. It’s so frustrating that businesses are trying to give inclusion in a broken method. They’re probably only trying to fill the 5% required positions for disabled people and still inquiring prejudice over blind people. Just in a more subtle way. As if they said.
“Sure I can include some visually impaired folk, but make sure they can see a bit so it won’t be a problem for me”.
Regardless of how much you see, you deserve a job opportunity, but it’s still unfair for me to see this subtle prejudice. You can be visually impaired, but you got to see a bit so you’re not considered useless or a burden.
I’m sorry if any of what I said might sound offensive, I needed to vent. I was once a low vision person and I’ve been through a lot of prejudice even then, but now it seems that absolutely everything comes with prejudice, and I needed to take it out of my chest.

So, even being blind I’ve been making some effort to learn Brazilian sign language. I want to be able to communicate to deaf and deaf-blind people, also want to be able to add sign language interpreting to the videos I post regarding accessibility, because if I want to promote accessibility, I want to include what I think is the most isolated community of all disabled people. It’s so hard to find someone who can hear and knows sign language that it saddens me.
But I’ve been improving, I have a very fast learning capacity, so much that braille I learned in two hours. So even if I’m being active on learning sign language for less than a month, I’m almost confident I can add it to my résumé.
Go on thinking I’m useless for being blind ableists, I dare you! 😊🤟🏻

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.

I’ll make this post a bit short considering the app is weird with my posts.

I’m struggling, I need support that I can’t actually get, for once I need a “babysitter”, I need help.
Trying to live by myself with level 2 support autism + being blind + depression. Yeah… not a great combo.
#AutismSpectrumDisorder
#MentalHealth #Depression
#Blindness

Today I went to the ophthalmologist that did my congenital cataracts surgery to ask her for an opinion on what might have happened to my eyes for me to lose so much sight.
I was already low vision before but then I got legally blind, but no answer given from any ophthalmologist I’ve visited so far.
She told me, she gave me a name for my condition, a diagnosis and that’s so much relieving as now I have an answer.
Retinal/Macular Dystrophy is the condition. She told me usually congenital cataracts comes with something more, but my condition was from a genetic form that would only show signs at the age it started back in 2021, so it slipped undiagnosed.
Unfortunately I now know I can never have the little sight I had back, I will have to remain legally blind, but that’s fine.
Retinal/Macular Dystrophy is degenerating so what I can do is support with some vitamins that aren’t found in food, unfortunately they’re a bit expensive but I’ll see what I can do. But having the vitamins I can stabilize and slow down my condition, I might be able to retain the very little sight I still have.
So yeah, great news and I can finally rest in peace about it, I now know it’s not likely I’ll sleep and wake up to nothingness. Also my vitreous humour is almost fully detached and she said it’s not a bad thing, it’s actually good, because it prevents a potential retinal detachment so even me having a high tendency for one, it won’t happen so easily.

I heard about this method for over a year. Had to answer maths questions about it with those classic problems “x is using pomodoro method and is studying for h minutes and resting for k minutes. When will x be resting based on the info x will study from 9:00 to 18:00.” and then 5 alternatives to choose certain moments.
This method got me spiteful for hearing about it so much, but here I am, preparing to sleep, having more stuff than I should to study tomorrow, and needing an entire day for that. Will go for 45min studying and 15min rest.
I might not see my grandpa as a wise person for a LOT of reasons. But one phrase he told me when I was little “you got a first time for everything”, and of course not taking the every absolutely, he’s right so far.
Those are moments we surely bite our tongues and comply. 😴