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Blind and Visually Impaired Community

Full History - 2022 - 04 - 22 - ID#u9pp49
27
I wish living in accessible places wasn’t so expensive (self.Blind)
submitted by brb_28
Hello, I’ve been legally blind since birth due to a condition called ROP (retinopathy of prematurity) I live in small town that is fortunately pretty walkable (no grocery store but there are several convenience stores and some restaurants) because it’s an old town. The area is pretty poor, and there is a bus that goes to the nearby city (ridership is pretty strong on this line so even though service isn’t as consistent as I’d like, I don’t fear it getting the axe every year when the city restructures). I also take this bus to my essential retail job a town over. This is a pretty good setup, and I’m fortunate to have a job; however, it’s not without its problems.

Rent, even in my town, is over 50% of my income, and the cost of transport just keeps going up. I keep saying this will be to the year I finally apply for the half fare card from the transit authority but I’m rarely able to make it to their downtown office during business hours.

Most of the activities I do are in the city, but the bus service has gotten so inconsistent over the course of the pandemic. I LOVE the climbing gym, but I have only gone twice since they’ve reopened because what used to be a 2 hour door-to-door commute each way became close to four hours each way. The gym is only 13 miles away. I could probably ride a bike there faster or, when I’m actually in shape, run there—although that wouldn’t leave me with much energy to climb.

Running is also something I like to do, but finding places to run in my tiny town is difficult. I typically stay to the same few streets where I know I know contact with cars is pretty low. It gets a little boring knowing I can’t change up the scenery or even join a running group because none are nearby or I can’t get to the meetup point because the bus isn’t running that early.

I know moving to the city would solve some of my access issues to my hobbies, but I just can’t afford it. I wish I could move abroad like my able-bodied sister, but I just can’t imagine how difficult it’d be trying to find a job, especially because I know how hard it was for me here. I have visited her when she lived in London, and the transit was glorious, and I even got to take the train up to Liverpool. It was so freeing to be in a place where existing without a car wasn’t some massive inconvenience. It pains me knowing I could never move there because I’m not a skilled worker, and the cost of living is just too high.

My sister now lives in Prague where the transit is also pretty great and super affordable! We even took the train a couple hours away so I could run in a half marathon as it was a dream of mine to run a race in another country.

It is a dream of mine to visit the Netherlands someday because I hear their transit is top notch! And the bikes THE BIKES! I can only dream of being able to ride a bike to the grocery store or to the gym without fearing for my life—like I have some words for the man who popularized vehicular cycling in the US. But I’m afraid to visit because I’m afraid to see how accessible life could be.
Japan and South Korea are also on my travel bucket list.

People have always said that one of the most difficult things about being blind isn’t being blind but rather the isolation. The older I get the more I understand what they meant.

TL; DR: I just feel so trapped. My closest friends all live out of state or hours away by car. My quality of life is pretty poor because accessing the things that bring me even a modicum of joy is very difficult, and cost of living is too high in the city. I can’t move abroad because I’m a low skilled worker (I hate this term but it’s the only one that fits) with a useless college degree.
TechnicalPragmatist 7 points 1y ago
I know what you mean I still live with family and that’s the only way. Fortunately for me, I’ve always lived in big cities and metropolises. I am in Los angeles county where the buses are very decent. Not as fortunate as the bay area but compared to many other places I really don’t have a thing to complain about. I live in the suburbs and while it’s very safe here the bus lines there are still many each come once an hour. I get around quite decently.

Many places here that are not in the cities do suffer from the same or worse no bus service and requires a good hearted neighbor or a relative.

And yes to live in any of these big cities it is quite expensive and not really affordable. Unless you do section 8 housing here in the US and then you’d be living in the projects and a pretty poor area, even the ghetto.

But I definitely can agree and sympathise.
brb_28 [OP] 3 points 1y ago
Oooof, rents are probably so much worse out west. I can’t even imagine trying to make it out there.
The worst part was having to move back in with family because it was just unsustainable and plans with a potential roommate fell through.
It’s just not a good environment for me, and I can’t do anything or go anywhere without being questioned or getting my phone blown up with texts like “where are you? “why aren’t you answering me?” “hello?” Like, I am a very boring person, I stick to my two hobbies if I do leave the house for something other than work. They act like I can’t do anything for myself despite the fact that I have always been fiercely independent (which is honestly probably a trauma response to some degree) and lived successfully on my own with zero issues for four years during college. It’s very suffocating
TechnicalPragmatist 6 points 1y ago
The rents out here are riddicuous and the markets for housing isn’t cheap no.

And that’s terrible, and yet I understand. I am asian but very americanized myself, but when I suggest living on my own I get suggestions about not being capable enough and this and that.so I get it. But having your phone blown up is not nice. It’s interesting they let you go to work but anywhere else they question, it’s not like the work time you couldn’t get the same level of danger you’re also going out.

That’s an interesting point about trauma and how it effects us with being absolutely fiercely independent and also for me fiercely independent for others too. I do a lot of advocacy work and outspoken stuff. I lived 3 years by myself during some part of my college but yeah.

Sorry to hear about the rommate and moving in. I am afraid that would be what would happen and who knows if I would get a good or bad one and what would happen I haven’t tried a roomate. But yeah.
brb_28 [OP] 8 points 1y ago
Yeah, I saw a tweet about fierce independence being a trauma response and if really resonated with me. I’ll quote it:

“I don’t know who needs to hear this but hyper-independence is a result of trauma. “I don’t need anybody and must do everything myself” really means “my ability to trust has been injured by people systematically letting me down and failing me”
TechnicalPragmatist 5 points 1y ago
I can for sure see this one. I have studied some stuff more introspective self work stuff that type of literature. And it says something to that effect actually. Not as bluntly or directly but one type of people because of their environments learnt to be super responsible and stuff of that nature.

Not able to trust for sure you for you, you can only be the only one responsible.
brb_28 [OP] 5 points 1y ago
I feel like outside of college towns and outside of massive cities like New York, it’s almost impossible to find reliable, like-minded roommates unless you already have connections.

And like no one builds apartments or rather they’re not allowed to build apartments because of our dreadful single-family zoning laws. So any apartments that do get built are “luxury” units that cost waaaay to much. Or they build those apartments towers that are affordable and nice units and located on or near the bus line, but they’re only for old people. It’s like we can’t ever catch a break
TechnicalPragmatist 3 points 1y ago
Hmm. That’s interesting and unfortunate.

And yeah, roomates can be hard to find in general. And if you’re like me a. Person with a super strong personality it can be even more difficult.
fhifck 2 points 1y ago
You know, it sounds very suffocating but it does sound like they love you and are scared. I wonder if there are ways we can help to show your family that fully blind people can live very independent lives with the right supports! You could tell your family about the UC Berkeley Bat Cave — it’s where all the blind techies would hang out and invent things! One of the former bay cave members is now an inventor at amazon. I am not saying these are easy to achieve by any means but I do think having blind role models is very important. Not just for us but also for our loved ones who may not know that a lot or improvements have been made in terms of blindness skills and living independently
brb_28 [OP] 4 points 1y ago
I totally agree on having blind role models!! One of the most important things is visibility so that children can see themselves represented and know they can succeed, and so we never forget just how capable we are!

That said, I don’t like the whole “inspiration porn” ideal that is often forced on us. Like I’m not inspirational for simply existing and doing everyday tasks. If you haven’t seen this TED talk, I highly recommend it!

$1
fhifck 2 points 1y ago
Yes!! I totally agree. I hate the inspiration porn. What I strive for is “normalcy”. I want it to be so normal for me to be blind and be a member of society etc. that is true equality to me when people just see my blindness as a trait and not more or less than that
brb_28 [OP] 2 points 1y ago
I live like a sighted person and don’t even use a cane or a guide. I “pass” as sighted for the most apart so most people don’t even realize I’m legally blind until I have to put my face close to something to read it, or they see my nystagmus and strabismus and ask about it. So like it’s even more confusing because it’s not like they have had to adapt anything for me, and it’s not like some rando on the street is going to be like “that’s the legally blind girl, let’s hurt her because she won’t be able to identify us” or whatever weird delusion they think will happen to me
fhifck 2 points 1y ago
Oh dang you are so lucky you can pass. I’m not even legally blind but I have no depth or contrast so I need the cane and people do try to mess with me as a petite gal with the cane in SF. I’ve been using it for a week and I’ve had two negative encounters with unhoused men acting out (in part because they think I’m blind). Luckily I’m safe. But even though sf is accessible there are a lot of terrible and weird people in the city and the mayor lets them act out. So it’s great that you can pass that is a huge blessing!
DHamlinMusic 4 points 1y ago
Yeah I am lucky in that I live with my fiance and we have a decent if complicated housing situation. Even with that rent is still like 45% of my benefits plus even with good transit options I still basically rely on her to go places, which feels off as I used to do most of the driving. It really does suck not being able to just decide to go out on a whim.
brb_28 [OP] 4 points 1y ago
Uuugghh exactly! I can’t figure out how to quote, but not being able to just go somewhere on a whim is so disheartening! Like there are things I miss out on simply because I’m tied to the bus schedule or the event isn’t worth the $80 for an Uber

I don’t get benefits anymore, and I actually owe them like $6K. It’s outrageous. Long story short, I’ve never once seen a check because my mom always took them, and when I started worked more hours even at minimum wage, suddenly that’s too much money. Oh and ooops, they audited your account before the bills came out and you had over $2K in there, and now owe them back payments (for the money I never once saw by the way). I didn’t even know I was still getting checks. All because I let her convince me to let her keep her name also on the check when I had to reapply at 18—which is honestly so silly, like, my disability doesn’t go away just because I’m not a minor anymore. But if I had known the drama it’d cause, I never would have reapplied.
fhifck 3 points 1y ago
Oh! I wrote a few minute ago but I just thought of something — have you already had independent living skills assessment from blind field services? Do you have a caseworker of any kind? Because tell them what you shared here and they will likely want to help you out! My caseworker is helping me to stay in my home and relearn how to do things. And if you live in America there is something called “the department of rehabilitation” (maybe in every state?) but the whole point of the DOR is to get the disabled (not just blind!) to full employment and independent living
brb_28 [OP] 2 points 1y ago
I tried working with an organization like that near the end of high school, but it felt very dehumanizing to me. It could have just been the organization that’s in my city, but the experience made me feel so small and like I needed to prove to these donors (the ones who would be giving the organization the fund the scholarships, and some of the accessible tech the organization could provide) that I was worth their time and money. Some of the things I would have to do in order to “benefit” from this organization would have been to: write a letter to the donors on why you think you need their help, give them a list of your possible majors so they can decide which one they would suit you (they never met me or any students they helped), if they pick you, you have to write them a thank you letter each semester telling them how their money is helping you in school and tell them how classes have gone, and give a speech about how “life changing” this was at our charity dinner that we use to try to get more donors.

I walked away and that experience has kind of put me off from looking into other organizations because I just feel like we shouldn’t have to prove ourselves to be deserving to go to college or to have access to accessible tech
athennna 2 points 1y ago
I think the other poster is talking about government programs designed to help, not charity organizations you have to be performative for.
fhifck 1 points 1y ago
Hello! Having to “perform” gratitude for a charity is a major bummer and I can see why you would not want that. The program I’m describing is through the state. In my case, California. But if you are in the United States your state government will have something called “blind field services”. It’s not charity. They are there to help you! My caseworker is helping me to keep my job in the tech industry and adapt to my vision loss. I’m getting special training (orientation and mobility) to be able to navigate my city safely by myself. So I have actually found working with the government to be very empowering. They want me to succeed and stay in my home. My caseworker helped another blind gal get accommodations to finish law school. I didn’t have to do anything special to get help I just had to contact the “department of rehabilitation”
brb_28 [OP] 1 points 1y ago
Yeah, I think the place I went to was a private non-profit. I’m in Pennsylvania and that was the place that was recommended to me by my doctor or something. I don’t know if there are any other options in the city near me. I don’t know if it was like that just because I was going in for college scholarships/assistance or if their development/rehab programs would be different. But I know I got a bill for having to stay on the unit for a week while they did their evals. Thankfully I had insurance and it covered almost all of the stay. The staff were all so lovely tho, and I had a good time there until I was told about all the hoops I’d have to jump through. The only person I didn’t really gel with was my caseworker. But as a teenager at that time I really didn’t feel comfortable seeing if I could get another one
fhifck 3 points 1y ago
Hi friend!! First, I am so sorry and you are not alone in feeling these things. It’s a great first step to post here and see if other people have tips etc. I live in the SF Bay Area — I’m half blind. I do know fully blind people who live here and make it work too. (I don’t recommend moving here without a plan! I only mention it because I do know that somehow my totally blind friends have figured out a way to live here. I think a few of my friends live in a home for the blind but I have other blind friends who live independently here). I wonder if you can get linked up with the National Federation of the Blind or some other blind folks in the city next to yours — having a roommate could help defray costs but not everyone wants a roommate.

Anyway, I’m sorry I don’t have better advice. Even though I live in a city my mobility has been low lately. One thing that helps me is yoga. Idk if you can access YouTube but there are free yoga videos. Yoga has helped me to cultivate “inner freedom” while I make my plans to be in the world again. Anyway, I’m rooting for you and I know everyone else on this forum is also!
brb_28 [OP] 3 points 1y ago
Oh no, any advice and knowing that others are out there thriving is good enough for me!

I can’t do anything without a plan, so I definitely wouldn’t consider moving anywhere without thoroughly vetting the location/having a job that afforded me the opportunity to live there. It’s actually one of the main points of contention I have with my sister. She’s like “just pick something” “just apply places” like she doesn’t understand the amount of extra leg work that goes into just finding out if it’s worth my time even applying somewhere. Like before I even send in an application, I have to look up where the job/office is, what transit options are available, if it’s in a business park are there sidewalks, does the transit option require me to only work certain hours, are there transit connections involved that might get missed during inclement weather, and so many other little things that people who can drive just never have to think about. It makes the already exhausting job hunting process, even more exhausting
fhifck 2 points 1y ago
I wonder: are there any remote jobs you could skill up for or are qualified for? Because I work remote most days of the week and that’s been great for me
brb_28 [OP] 1 points 1y ago
Part of me wants to go back to school purely because school can be “a way out” and let me experience living in the new area/possibly even abroad like what my sister did, but I just can’t fathom taking on more school debt if I wasn’t guaranteed a good paying job right out school.

Back in high school wanted to study physical therapy and eventually get into sports medicine because I love medicine but knew my options were severely limited with scope of practice. Several hours of scrolling in forums, allowed me to determine that physical therapy is one of the more “accessible” fields. But the dean of the PT school in the city basically traumatized me by saying I’d fail out of the program because clinicians wouldn’t take me because I’m a “liability” and that I wouldn’t be able to take the final (a full cadaver dissection in which you have to label and identify the muscle and such) because they wouldn’t be able to figure out how to make that test accessible to me without give me “an advantage.” And then he closed out the interview by telling me someone would die in my care because I would be able to tell that they’re asphyxiating or something. And then I had to go tour the campus, what fun!!! So I just went to a smaller state school and took everything and anything that interested me, astronomy, sustainable development, history, English, anthropology, ethics, a very boring business class, and so on. That interview still haunts me nearly a decade later and it was the first real time I’ve faced such stigma because of my disability, and remember, i pass as sighted. I shudder to think of how much worse it could have been if I turned up with a cane
brb_28 [OP] 1 points 1y ago
I was really hoping more opportunities would open up with more people working from home these days, but sadly I keep seeing more and more return to office notices going up.

I have a bachelors degree in Liberal Studies so as I like to say, I have a little bit of knowledge in a lot of areas, but not enough to be deemed useful by employers. So I really don’t even know where to apply my degree or skill up
Rethunker 1 points 1y ago
If you’d like to connect by private message, I’m interested to know more about what sort of assistive tech might help. I’m on the U.S. East coast. I develop assistive tech and have connections with others who do as well.
brb_28 [OP] 1 points 1y ago
Sadly no, I am not a Czech speaker
BlindFuryC 1 points 1y ago
Hi op, I can relate to a lot of what you're saying. I live alone in a small town near to London. For going around my small town, I either have to rely on taxis/Ubers, which are pricey, or the bus service, which is granted becoming more reliable, but doesn't go anywhere too useful like the train station, because reasons. For this reason, I haven't had access to a gym since before Covid, when I used to use one near work, because traveling to one would just make the whole thing seem longer and much more impractical to squeeze into everyday life. So it's hit my fitness. Conversely to your experience of London, once you start getting into the towns on the outside of a city, it's very much a driver's territory.

Like you, I think living in a city or similar would make all of this a lot easier, but the cost is prohibitive. Like you said, London's cost of living is no joke.

I'm considering moving right now and am looking for other small towns (because price and life priorities) where I can place myself a bit more centrally. But again, you do pay for that. But I think it's something I'm going to have to suck up a bit.

I hope you can find a way to get closer to the things you want to do, as it'll improve your quality of life.
bradley22 1 points 1y ago
Yeah man, london rices are horrible.
brb_28 [OP] 1 points 1y ago
Yeah, I really hate the concept of “drive until you qualify” when it comes to housing costs. It’s hurtful to everyone, not just disabled people. No one should be shackled to a car and all of its expenses just to be able to participate in society and feed themselves.

The UK and Europe are a little better at building slightly more dense, mixed use neighborhoods than the US, but that isn’t to say they don’t face many of the same issues of costly suburban sprawl.

The cost was why my sister left London despite loving it there. Once she was out of student housing, the cost just became too much, and I’m sure it’s only gotten worse since she left years ago
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