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Blind and Visually Impaired Community

Full History - 2021 - 06 - 21 - ID#o4ziin
16
Mother is having trouble adjusting to life with low vision (self.Blind)
submitted by cow247
Hi everyone. My mother is fighting stage 4 breast cancer with brain metastasis. On the cancer front, she's doing pretty well. All of her scans seem to be fine, but the spots in her brain and the radiation treatment have left her with significant deficits to her central and peripheral vision. She has some ability to read and use technology with the use of enlarged text and other accessibility options, but it's getting more and more difficult for her to navigate. I'm looking for some advice in a couple areas.

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For those of you that were born sighted and then began to lose your vision, how did you adjust to this emotionally? My mom has been quite depressed as she's come to realize that this problem isn't fixable. She's struggling to complete daily tasks and just hasn't been taking it very well. She has some mental health resources, but I don't think they've been doing enough for her.

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The second bit she's having trouble with is maintaining independence. She's 64 with a sound mind and otherwise physically able. She's not able to drive anymore and is having a lot of really unfortunate issues using things like Uber and Lyft. She can see well enough to order a ride and put the destination in correctly most of the time, but she frequently has issues with drivers not being available, causing her to have to wait outside in poor weather for up to an hour at a time waiting for a short ride. She also has issues with drivers generally not realizing she has a disability. She doesn't have anything that drivers can see to show she's visually impaired. Frequently drivers will not answer their phone and sit somewhere nearby and then cancel the ride because she couldn't find them. How have people on this sub dealt with transportation after losing the ability to drive?
masthews 3 points 2y ago
I was born visually impaired so I can't comment on what it's like lose vision later but I can touch on this point:

>The second bit she's having trouble with is maintaining independence. She's 64 with a sound mind and otherwise physically able. She's not able to drive anymore and is having a lot of really unfortunate issues using things like Uber and Lyft. She can see well enough to order a ride and put the destination in correctly most of the time, but she frequently has issues with drivers not being available, causing her to have to wait outside in poor weather for up to an hour at a time waiting for a short ride. She also has issues with drivers generally not realizing she has a disability. She doesn't have anything that drivers can see to show she's visually impaired. Frequently drivers will not answer their phone and sit somewhere nearby and then cancel the ride because she couldn't find them. How have people on this sub dealt with transportation after losing the ability to drive?

I believe you can get a cane that signifies that you're visually impaired even if you don't necessarily have to rely on it all the time. If it's an issue of her not being able to find the car, I'd suggest that she call the driver while they're on their way to let them know to look out for her.


Out of curiosity, is she located near a major city? If not, is relocation out of the question? Most of my transportation woes are remedied by the fact that I live in a city with a lot of walkability and public transit. I do use Uber and Lyft somewhat frequently as well. Sometimes, I do hit availability issues and/or surge pricing but I don't usually have to wait longer than 10 minutes. It can be really hit or miss though. Both companies are honestly garbage.


Depending on where she's located, she might have access to paratransit and things like that as well. I would really suggest that she get in touch with her local Commission for the Blind. They can elaborate more on local transportation options in your area and can help her develop skills that assist with independent living.


It really is unfortunate that public transit is so bad in the United States. It's subpar everywhere in the US honestly, even bigger metro areas.
SLJ7 2 points 2y ago
Not that this solves the problem, but is one of you reporting drivers when they don't communicate? I regularly use Uber whenever I visit a city that has it, and have always been able to send a text or make a call. I recognize that this is not how things work in your area, but it is a reasonable expectation.
cow247 [OP] 2 points 2y ago
Yeah, honestly my experience has been pretty similar to yours. Granted I can usually figure things out by looking at the map and surroundings, the driver has always answered my phone calls. My mom has to make a phone call for almost every ride and sometimes they just don’t answer. It’s a little worse because she’s in a suburb of Kansas, so there’s not always a ton of drivers out. Uber support doesn’t have a ton of options to make more specific complaints about things like this unfortunately.
SLJ7 2 points 2y ago
I know it's harder to make a complaint about a cancelled ride, but people do it with service animal complaints all the time so there has to be a way right? (I don't know things.) One option is to set up a text shortcut that expands something like vimessage to "I'm visually impaired, so please look for me or come to <place>"

The nuclear option is to sign up for Aira, which has integration with Uber and Lyft and makes it possible to video chat with an agent who can look for her ride and give verbal directions to it.
cow247 [OP] 2 points 2y ago
That first suggestion is a great idea, thank you. I think most people would be more helpful or understanding if they were aware that she was visually impaired, but there’s nothing about her that makes this immediately obvious. I think a lot of people are unaware of problems people can have that aren’t just complete blindness.

Second suggestion is something I’ve looked into a little bit. Hopefully it doesn’t come to that, but I agree that’s an option if it gets to the point where she’s just staying at home all the time.
angelcake 2 points 2y ago
Your mom needs to get an identification cane. There are should be an organization in your area that is set up to help folks who are losing their vision. Depending on the size of the city in which you live there may be public transportation options for people with qualifying disabilities. My partner is low vision bordering on legally blind and he uses public transportation but he doesn’t have to pay for it.
cow247 [OP] 2 points 2y ago
I read about ID canes today and I’m definitely going to pitch that to her. I’ve been thinking that she needs something that people can see that she has a disability so they’ll be more patient with her. She lives in a suburb in Kansas so public transportation and walkability are kind of out the window.
B-dub31 1 points 2y ago
I lost a significant portion of my vision at 37 after a medical emergency. Has your mom seen a low vision specialist? If not, then she definitely should. Mine hooked me up with all types of resources.

Has she contacted her state's (assuming you are in the US) organization for the blind and visually impaired? Our's is wonderful and offered Orientation and Mobility Training and assistance with training on and accessing assistive tech.

iOS and Android both offer a ton of accessibility features for the visually impaired. However, there is a learning curve, and I think it is additionally frustrating if you over-rely on your remaining vision. I learned a lot by looking up YouTube videos on Talkback for Android and I'm sure there are similar content available for iOS.

I can navigate (mostly) by sight in most situations by sight, but I do use a white cane in large crowds and in situations like when there might be a lot of stairs or terrain changes. She could use one as what's called an ID cane which is not for navigation per se, but rather to communicate to others she is visually impaired.

Finally, she should definitely seek mental health counseling. With all she's been through, she probably needs it. It took me a little over a year to fully process my vision loss and I'm still learning what the new normal is. The things we do often we relearn quickly, but there's things pop up all the time and I'm like "I can't do this the same way as I used to." It takes time to adjust. Good luck and best wishes to for your mom.
QuentinJamesP89 1 points 2y ago
I have also had a huge amount of issues with Uber and Lyft. Many times they've hung up on me and driven off when I have tried to explain where I am and that I can't see them. Honestly public transportation is less convenient and rather dirty, but it's also cheaper (especially with half fare for those with disabilities) and less frustrating, and this is why I tend to use that more often. Would she consider relocating to have access to better transportation options? That's what I've had to do. There's also paratransit, which will often go where the bus doesn't. Unfortunately, it's even more inconvenient and they generally give a very large window of time in which they'll show up so it's not particularly helpful if you are on a tight schedule.
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