Blindness

It’s such a weird concept for me when it comes to my condition.
I grew up low vision due congenital cataracts, even having made surgery at 3yo. My first experience in the visually impaired world wasn’t known for me. I never realised I saw so little compared to others, I never had something to take as reference so for me: it was just normal. I was just clumsy. It’s normal for people with myopia to have to wait the bus to be like 2 metres from you to signalise for it to stop. That’s how I grew up until an eye doctor tell me: “you must not lie and guess the letters. If you lie and guess them I won’t be able to properly diagnose, so if you can’t see them, just tell me.”
And that was my first time hearing the term “low vision”, at 18yo, the same year my retinal dystrophy decided to manifest, basically about 6 months before I became legally blind.

What makes it even weirder for me is taking years to know I have a retinal dystrophy, and to now be self aware to know the symptoms it displays. Not a self diagnostic but also not an opinion of a doctor but a guess I have.

My condition seems to be Retinitis Pigmentosa Sine Pigmento. A form of RP that’s really hard to catch because it doesn’t show itself as most forms of RP do.

And it’s a hard thing to grab because I didn’t know I was night blind until recently, I thought I couldn’t see at night because I have photophobia and the street lights and cars messed with my vision. I had to discover my night blindness in a very out of the box way. I knew I had tunnel vision but that’s one of the aspects that made realising the night blindness even harder.

For those with congenital aumarosis (100% blind by birth with no other condition in play), what they see, is absolutely nothing, and humans usually can’t grasp the idea of absolutely nothing. There are some tests you can do to have a partial idea of what it is, but it’s not black, it’s absolutely nothing. And for some reason, that’s a concept I understand. So when it comes to my tunnel vision there’s no blackness outside of my visual field, and I don’t have enough visual memory to even know if this lack of field of view was once lower, I have no idea what’s outside of my field of view, and it’s not blackness, it’s just nothing at all, and I even had to try to explain to blind people about nothingness because they acquired blindness and they see full black or full white, or just gray.

So I never even noticed the night blindness, because it portrays as street lights and vehicles headlights, and just a deep darkness that makes everything basically black, and I just didn’t understand that besides the lights, the blackness meant I couldn’t see. Until the day I went into a darker place with sunglasses and I couldn’t see, then it came, late again, but came, what night blindness looks like.

So basically: tunnel vision, check; night blindness, check; getting darker becomes something similar to static on a tv, check. I will go for a diagnosis to know if it’s RP or if it’s another retinal dystrophy that has similar symptoms, I plan on going after it this year, I just need to have some time to breathe since I haven’t stopped since September and I’m basically burned out.

I’m in my second week of attending daily 30-minute meditation classes, and I already feel like I’ve learned so much. One major theme my class has been focusing on is “surrender.” To surrender is to let go of the ego and allow yourself to be fully present with the moment as it is.

I keep returning to the question: What does it mean for me to surrender?

When I experience a neurocardiogenic syncope episode, surrendering means accepting and acknowledging what’s happening, without letting it define me.

When I go to a routine eye appointment for pressure checks, surrendering means trusting that I’m doing my part: taking my medication, using my eye drops, and allowing my medical providers to make the best decisions for my care.
I could go on and on.

Surrendering is hard. Our ego loves to get in the way. But for the first time, I truly feel like I’m re-wiring my brain.
#MentalHealth #Anxiety #Glaucoma #Uveitis #Blindness #NeurocardiogenicSyncope #HypothyroidismUnderactiveThyroidDisease

I’m really frustrated here right now, I’m going home, and home is very far, as I was in a formation program for software devs.
I couldn’t finish the last exercise of a list, only the first 6 ones were obligatory but I wanted to do all 10 of them, and I got stuck at 10.
It seems like a very little thing to worry about, but it’s not worry, I just have a very rigid brain that tells me I need to finish and do perfect else I’m not good enough.
And I’m already in a position there that I know, even if people say it’s ok, I don’t doubt a single moment that there will be a lot of internalised ableism and a lot of annoyed souls because I’m the first blind person in the program that actually got into it. But then the accessibility is close to none, we’re trying to get by, I’m using the very little bit of sight I have left to try and read with a lot of zoom when I can’t use Orca to read stuff for me. Yes, Orca, Lunix’s discontinued screen reader that gets tweaked from time to time but honestly it’s very much abandoned.
So everyday is me trying to not only do things in a way my brain will see my worth, in the way my brain will accept, because cognitive rigidity is a nightmare and a source of self hate. And then there’s this, being everyday surrounded by sighted people, or some lv1 autistic here and there (at least I think someone might also be on the spectrum). But no one who basically would stop being able to use the computer because is stimming so much that can’t avoid moving their hands and it making the mouse move being impossible to see anything even if you’re sighted. And then go to the restroom because needs to cry and move the whole body until stabilise to be able to do anything.
I wish I could say “try being on my shoes for a single day and feel what I feel” but truth is, I’m very much used to blindness and autism, it’s my everyday life. If a sighted person experiences blindness for a single day only, they would pretty much be even more ableist, because not so much of news but they will not be able to do anything almost. So yeah, to know what means to walk on my shoes, means 23 years and a half dealing with undiagnosed autism, lots of forms of abuse, and progressive vision loss happening abruptly after living a whole life with low vision and only discovering it at 18yo.
Quick editing just to fix an English breaking over there and to clarify that I am a diagnosed autistic, but I was only fully diagnosed after 18yo, so out of these 23 years and a half, 18 would be dealing with undiagnosed autism.
Also, no hate towards lv1 people, it’s just that the difference when it comes to a meltdown or shutdown , and the amount of repetitive movements or sounds, the level difference has a very large and clear line in between.
Also something fun to say: today I confirmed that I really hate umbrellas. I avoided buying one because carrying a cane is already a hand that will be unavailable. Try a cane and an umbrella. It’s indeed a nightmare.

I wish you all perfect health and happiness always 💖✨🫶
#CheckInWithMe #MentalHealth #Addiction #ADHD #AnorexiaNervosa #Anxiety #Psychosis #BingeEatingDisorder #Bipolar2 #Bipolar1 #BipolarDepression #BipolarDisorder #BorderlinePersonalityDisorder #SchizoaffectiveDisorder #Schizophrenia #SuicidalIdeation #Depression #Selfharm #Trauma #ObsessiveCompulsiveDisorder #EatingDisorders #MoodDisorders #AvoidantPersonalityDisorder #AutismSpectrumDisorder #Autism #BreastCancer #Blindness #Cancer #ChronicIllness #Disability #ComplexPosttraumaticStressDisorder

This morning was filled with anxiety. I had an eye doctor appointment and I always have bad anxiety because of a traumatic experience I had 5 years ago. So I usually go to my appointments with a family member to help distract me. Butttt today I had to go alone and take an Uber to and from the appointment.

On the car ride to the appointment I was on the verge of an anxiety attack. My mind kept racing, heart was racing, and I started sweating like a pig. But I recognized what was happening. I practiced my breathing techniques and pinched my fingers as I counted and got back to feeling calm.

Did I have to work on breathing the whole appt? Yes. But I did it. And I did it by myself. I just need to keep putting one foot in front of the other
#Blindness #Glaucoma #MentalHealth #Anxiety

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! 😊🤟🏻