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Blind and Visually Impaired Community

Full History - 2022 - 02 - 01 - ID#si9wgj
80
Rant: we aren’t your guinea pigs (self.Blind)
submitted by [deleted]
[deleted]
OutWestTexas 32 points 1y ago
I admit I get tired of “researchers” coming on here to develop an App that already exists.
Mamamagpie 19 points 1y ago
I feel the same. Some them are also asking questions that have be asked before, meaning the are also to lazy to search the sub first.
[deleted] [OP] 13 points 1y ago
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Littlebiggran 7 points 1y ago
It offends me in that they don't take the time to even read the purpose, past postings, or even get to know us. Instant gratification, instant answer, no interaction, no manners.
[deleted] [OP] 2 points 1y ago
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BurnyAsn 3 points 1y ago
Can we list these rules for such question answering in the description of this subreddit?
Iamheno 12 points 1y ago
I agree, and also admit,I’ve reached out recently to try to connect with other rehab professional.

‘However, put yourself in their position, you’re a undergrad or graduate student who’s taking way more classes than you should and are assigned aproject to study people with BVI? How many people with BVI, on average, do you think this student knows or is around? I’m currently at a large midwestern university with over 23,000 students, there are currently only 63 who are PWBVI can that number make an accurate empirical study?


As someone else said though writers pay a lot of money to go to conferences to learn things like police procedures or cooking techniques to use in their books, so I wonder why they come in here ask us about blind characters all the time.
[deleted] [OP] 8 points 1y ago
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Iamheno 9 points 1y ago
We don’, but I know I’ve made $600 (yes the checks cleared) on paid studies from here from a professional research organization. I don’t expect the students to pay typically it is just a quick questionnaire. Of course by doing it the way they do it they have no idea if the people that are responding or actually blind either.
[deleted] [OP] 3 points 1y ago
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FrankenGretchen 3 points 1y ago
But why not ask those 62 people? Why not reach out to other schools' DSS and see if they'd be willing to put up an announcement? CUNY schools did this kind of thing all the time before the internet existed so it'd be far easier, now.

As for sympathy for the poor students...

1. I tried for years to be one of those grad students. This was when the GRE officiators were clowns and eventually got sued for discrimination against blind/VI candidates but before the plaintiffs (NFB) won. I didn't get my MS cause I couldn't get the test. But I'm seen as the Perfect Resource for 'real' students to get their coursework done. I have a DD, now but really it doesn't matter.
And
2. I've seen some ugly stuff done to blind/VI people by students and their teaching institutions who felt their studies were more important than their subjects' dignity, safety or education. So, while I have that sympathy, I also notice the lazy or plaigaristic or condescending students and let them pass by. Impress your professors reinventing the wheel without wasting my time.

Every blind/VI person in here has a story about medical studentry doing harm in one form or another so that's just a given. My above rant is directed at the academic but not specifically medical-related foolery we get an unhealthy dose of as PWVD like app development or incredible new labeling systems or textured wallpaper signs. It's tiring.
[deleted] [OP] 3 points 1y ago
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Iamheno 5 points 1y ago
You’re correct but anonymity is easier sometimes
arosiejk 4 points 1y ago
As a nine year special education teacher in a large urban district, maybe I can lend some background.

Demographic studies in the past may have been helped by the concentration of services into a small collection of blind service delivery organizations.

Blindness and deafness are barely addressed in preparation materials. Vision and hearing teachers are unicorns. We know they exist but most teachers don’t encounter them. If you know about Lighthouse or refreshable braille displays it’s usually because: you know someone who uses them or are invested in the assistive tech communities.

Intrusive posts and poor search planning can come from a place of exhaustion. In much the same way that someone seeking disability services is frustrated and hits dead ends, students and people new to professions interacting with disabled students or adults can start flailing for somewhere to start.

I met my first vision specialist this year. There’s only a handful of them in the 3rd largest school district in the country.
changeneverhappens 5 points 1y ago
Teacher for the Visually Impaired here!
Everyone asks me if I know sign language.
Sigh.
No one knows what I do lol
arosiejk 2 points 1y ago
You’re the best! Specialized teachers are a huge lifeline, especially for those of us who have spent most of our careers juggling behavior strategies as our primary role in sped classrooms.
[deleted] [OP] 1 points 1y ago
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nullatonce 2 points 1y ago
I think my trigger is that they are low efford posts.

"Hey, how can i make my website more accessible"

Funny thing is that in dev communitys there is a motion that goes something like: "show you did research before asking seniors for help".

They're asking for a favor, but I don't see a reason to invest my time if they can't afford to invest theyr time, in theyr problem.
rumster 2 points 1y ago
The accessibility one is sort of difficult for people to fully understand. Over use of ARIA or WCAG guidelines can make a website experience unbearable. I know it might be frustrating but honestly those posts are helpful for the long game of making sites more accessible.
[deleted] [OP] 1 points 1y ago
[deleted]
rumster 1 points 1y ago
Honestly,

I'm working on this myself to figure out best way to explain why it's important. There is a lot of preachers in my business but they don't explain the real deal reason other then to make more money.
nullatonce 1 points 1y ago
Oh yeah, let them post, I'm not asking for restrictions.

I'm just probably a bit salty that sometimes people act like they're in tech support (sighted ones) and not in social community. So, just grumping along. :)
lvlint67 11 points 1y ago
It's really unfortunate that this happens to you folks. Maybe the "guidance for sighted people that want to make an app" in the FAQ should be expanded and escalated to some form of rule.
[deleted] [OP] 8 points 1y ago
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Littlebiggran 6 points 1y ago
They'd have to actually read it. Maybe a YO SIGHTED PEOPLE AND WANNA BE RESEARCHERS AND APP DESIGNERS READ THIS.
Criptedinyourcloset 11 points 1y ago
For God sake I hate this. I feel like they’re kind of like those people who went asked what type of update like to make they reply with “I’d like to make a Facebook but for sports. “
BenandGracie 8 points 1y ago
I have been going back an forth on this for a while. On one hand, I get tired of students coming here and asking the same questions that could be answered with a quick search. On the other hand, I have been a college student and had to do a project involving a disability, and I wasn’t real familiar with that particular disability. Luckily, one of my friends had that disability and he pointed me in the direction of some resources.
BooksDogsMaps 8 points 1y ago
I agree. I‘m mostly annoyed at how many questions get asked like every couple of days. I don‘t mind educating people sometimes, but if they can‘t even put in the effort to see if their question has already been answered, I don‘t feel compelled to spend my time on it.
Remy_C 7 points 1y ago
I don't see the problem. You want to know things, ask at the source. As long as people genuinely want to know the answers, I have no problem providing them. Better than just guessing.
Luse91 1 points 1y ago
Asking is an act of caring. People might ask the same question but there's always a different answer.
SqornshellousZ 7 points 1y ago
It's insulting. Writers pay to attend conferences and talk about planning to pirfect murder plot for example.
PaleontologistTrue74 6 points 1y ago
eh. idk. let em ask. we just dont have to answer if its not worth while.

id rather not have a ban/rule change. id rather just have us all collectively judge for ourselves if its worth our time.
impablomations 1 points 1y ago
At one point we were getting 20+ requests per week and they we starting to crowd out posts from members of the community, people were becoming very vocal and occasionally getting quite insulting to the posters as a result.

It is an issue that needs to be addressed, finding a happy medium is the problem.
PaleontologistTrue74 1 points 1y ago
Facts. Maybe a approval system before the posts become visible to the community? Upon vetting via mods ( sorry to increase your work load ) ofcorse.
[deleted] [OP] 1 points 1y ago
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mackeyt 6 points 1y ago
Touched a nerve and glad you did. I'm new to this sub. Legally blind from RP that has been ever so slowly sapping my sight my whole life. Came here in part from my search for a support site for high-functioning/professionals who are increasingly facing the limits (how's that for a micro-sub) Lots of great posts and responses. But the writers/filmmakers/app developers blatantly looking to profit from their questions is unsettling. Not sure there's an answer, but good to at least explose it.
[deleted] [OP] 1 points 1y ago
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Altie-McAltface 4 points 1y ago
I actually direct sighted people here when they have questions. When blindness comes up on /r/ask Reddit the only responses are either stupid jokes or people just guessing.
OldManOnFire 3 points 1y ago
Few people understand the emotional aspects of blindness - the grief, the depression, the anger, the overwhelming unfairness of it all, the bad days when you feel you somehow deserve this, or the frustrating days when you'd sell your soul just to be able to do something everybody else takes for granted.

The ones who come in here trying to fix our lives with a new app wouldn't dream of going to r/PTSD or r/Rape_Survivor and ask insensitive questions. But we don't get the same consideration or the same privacy because people don't understand the emotional dimension of blindness. I certainly didn't until it happened to me. I'm as guilty as everybody else.

As part of the mod team one of my jobs is to explain to students/authors/film makers who show up with their questions and surveys that we're not the blind version of r/AskReddit, we're more of an informal group therapy session for people going through the traumatic experience of blindness. We don't come here to answer questions from outsiders, we come here because this is a place we feel understood.

On the other hand, if I just delete and ignore their questions, how will the rest of the world ever learn? If I don't explain why we're removing their questionairres from r/Blind they'll never realize we're asking for privacy while we process the loss we experience.

The best I could come up with is to remove the questionairres and send a message to the OP, a message quite a bit like this one in tone and in content, explaining my decision. But it's time consuming, inefficient, and tiring for me to do that two or three times a day, every single freakin' day.

Some of us don't want to answer any questions. Others want to answer everything. Most of us are somewhere in between, and probably more of us are on the "Don't bug me with your stoopid questions" end of the spectrum. But many of the surveys and interviews are compensated, and some of us really struggle for money. It seemed unfair to me to deny the opportunity to those who appreciate it.

I really didn't know what to do, so u/rumster and I brainstormed a bit and came up with this.

It's not a perfect solution. Some outsiders won't read the sticky thread and post anyway. Some people will abuse the system. There will be problems we haven't even thought of yet. That's where you come in. Help us make this work. Give your feedback. Tell us what works and what doesn't work. Tell us how to do better.
[deleted] [OP] 3 points 1y ago
[deleted]
impablomations 2 points 1y ago
> But it's time consuming, inefficient, and tiring for me to do that two or three times a day, every single freakin' day.

You should have seen it last year and the year before. At one point we were getting around 20 per week, every week. Even though I'm in the UK I could tell when the start of the US college/highschool years were as we would get a constant stream of survey requests.

Eventually I got so burned out I just removed them and left a link to the "do you have a survey" sticky that was up.
kelpangler 1 points 1y ago
It’s hard to come up with a good answer. It’s a double edged sword that comes with the territory I guess. Maybe we could provide links to recruiting companies that deal with disabled participants. There are also the various foundations that have resources to support research… but I’m sure you’ve already included it somewhere. I’ve seen other subreddits do weekly posts to address certain types of topics. So you could have a rule that if it’s not in there then it gets deleted. That may require time and maintenance from the mods but maybe our community can help somehow.

Btw, your first paragraph cuts so deep. 😔
ABlindManPlays 3 points 1y ago
Not to mention would-be writers.
r_1235 3 points 1y ago
I just press H key to go to next post, ignore those which I don't care about.
gluesmelly 1 points 1y ago
Whoops. Stumbled across this post as I was **looking** at pictures of guinea pigs.

They are adorable, you should check them out some time.
rumster 1 points 1y ago
/u/oldmanonfire and I discussed this a couple weeks ago: We are going to setup a highlighted post where these people could post and in and people who want to participate can respond to. Period. I was going over best practice to implement it and I'm going to follow the /r/chicago weekly post thread as the concept. Let me know if you are all good with this.

Side note: I was going to ban them completely from posting but I got a bit flak for the nuke option too... So yeah... this was the end result above.
Nikanoru181 7 points 1y ago
Seems like the best way. It is very annoying, but awareness is important as well. Have to find a way to keep the sub focused on supporting each other while not nuking people that might have a legit interest in blindness/accessability.
rumster 5 points 1y ago
Great - I will launch it this weekend. If you have any input to add to it please feel free to message the mods or me directly. I need a good opener for this! lol :D
SpicyBeefwater 3 points 1y ago
As one of the sighted people with dumb questions that lurks in this subreddit, I 100% agree with this. On the occasion I can’t google and DO have to voice one of my dumb questions about my silly writing project to the subreddit, it feels simultaneously awkward and invasive, like walking in in someone else’s party with your improv sketch. Having a designated spot for this would be worlds better - thank you for that.
Drop9Reddit 1 points 1y ago
I like this idea. However you may also wish to add a rule to report posts that come outside of the weekly thread.
rumster 2 points 1y ago
Yep. I can't believe I'm saying this but /r/chicago has rules setup that actually now make more sense. I'm not a big fan of being a stickler to rules but after the last 2 months of issues it's time. There was an incident a couple weeks ago that really bugged the hell out of me that got me and /u/oldmanfire talking.
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