Blind and Visually Impaired Community
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Being blind and poor- access to help (vent, sorta) (self.Blind)
submitted by Dry_Director_5320
My blindness is a tough subject. It stems from a brain condition, not my eyes themselves, and has effected almost all the women in my family, but me the worst. My mom is totally blind in one eye, while the photophobia and strain of using my eyes most days leaves me functionally day-blind all the time. This is not something that can be managed by sunglasses, believe me. Every aspect of my life is effected by what the strain of light on my eyes can do to me (triggering stroke-like symptoms being one of the scarier ones). But even with good health insurance, here in the USA it is just not feasible for me to go see a bunch of specialists and get more and more tests run to try and get some kind of help. I did that for years before a doctor finally even took me seriously, and by then my condition was so progressed there really was no turning back, just managing living with it as it gets worse. I can’t get any help. I can’t afford any additional tests (I’m splurging to try to get an MRI soon to make sure the sudden increase in episodes from my eyes aren’t like a brain tumor or something), and I can’t get a referral for O&M because it is a neurological issue. It hurts so bad so often, and my sight just gets more and more fragile, and I’m just raw dogging it. Figure out how to use a cane by myself, got a new job so I can work in very low light because getting any sort of professional support is so hard and I’m the main money-earner in my house, figure out how bad is too bad and what is acceptable before I even consider spending money on a doctor visit…
Do any of you have tips for managing low vision and all of the crap that comes with it while poor?
Do any of you have tips for managing low vision and all of the crap that comes with it while poor?
Mamamagpie 8 points 1y ago
I have hemianopsia which is neurological lose of peripheral vision, and I’m getting O&M from my state’s commission for the blind and visually impaired. Have you contacted the one where you live?
yoyo2718 5 points 1y ago
This. I also have a neurological issue and my state dept for the blind and vip is assisting me even though I don’t fit the definition of legally blind because my functional impacts are so severe. Have you contacted them? I wouldn’t assume you don’t qualify. Don’t lead with “I’m not legally blind,” lead with “I’m functionally impacted in every daily activity,” and go from there. Be honest and I suspect they will assist. You will likely need a letter from a dr. stating your visual acuity and explaining why you need their services and how it would help you even though you’re not legally blind, but given your description I doubt that will be an issue for you. Maybe call an eye dr and see if they will write you a letter..if not you may need to do an eye visit in addition to a regular dr visit. Call your dept for blind and vip first though and see what they require.
Mamamagpie 5 points 1y ago
Since most of these organizations include services for the visually impaired, there is good chance you qualify.
I’m not legally blind. I don’t qualify for SSDI. But the CBVI helped me get what I do qualify for.
I’m not legally blind. I don’t qualify for SSDI. But the CBVI helped me get what I do qualify for.
yoyo2718 6 points 1y ago
Yeah, you also may qualify for other services, like the national library service or bookshare for audiobooks, Hadley for learning Braille via distance learning if that is of interest, etc. Are you using screenreaders on your computer and phone yet? If not, that may save your eyes a bit. And not to sound all new agey and stuff, but if daily pain is an issue, look into a daily 10-15 minute meditation. It sounds dumb, but it is researched that this helps. My MD recommended it for me and no joke after you get decent at it, it really does help. Stress increases pain i guess? Anyway, it’s free so no harm to try. Lots of free apps and YouTube videos you can try if you need something guided.
yoyo2718 6 points 1y ago
Also, as an aside, Hadley isn’t just for learning Braille, they have lots of videos on how to do daily living tasks as well, might be helpful for you.
AutomaticChair9 4 points 1y ago
I'm sorry that you are struggling. I definitely agree with the suggestions to look at state and government support services for blind and low vision individuals. They can help with skill training and possibly funding or equipment purchases. If you came to see me as a student who needed accommodations, we would spend very little time talking about your diagnosis and a great deal of time talking about functional limitations and pragmatic solutions to specific issues you are facing. Sometimes it helps to identify one issue at a time and find ways to deal with that issue. If you are having trouble with navigation, what are some ways to help with that (it sounds like you're already on a path to using a cane). If you work with a state agency they should be able to set you up with orientation and mobility training and that can give you additional skills and more confidence. If you have trouble using a computer, you can try text-to-speech and speech-to-text programs so you have to spend less time staring at a screen. Many of these tools are free and many existing programs (Office, Mac OS) have built-in accessibility features that can help. I wish you the best of luck!
carolineecouture 3 points 1y ago
I'm sorry this sounds tough. I think I would talk to social security about disability. I know that's a long road. The other thing is seeing if there is any kind of food assistance for you if that is a concern, food stamps, rent assistance, etc. You are correct that it's hard in the US living with a disability. Good luck!
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