Bring your karma
Join the waitlist today
HUMBLECAT.ORG

Blind and Visually Impaired Community

Full History - 2019 - 05 - 19 - ID#bqd3ck
12
I’m struggling to help my blind dad (self.Blind)
submitted by lordlongneck
So, my dad has retinitis pigmentosa, and it has gotten to the point that he really can’t see at all anymore. Shapes barely, and a little bit of light. RP just slowly takes away your sight, and my dad, who’s always been really sufficient in his home, is struggling more as it gets worse. And it doesn’t help that we live out in the middle of no where Tennessee and the closest metropolitan area is 45 minutes away. It’s really been stressing me out cause I pretty much help my dad with shopping and chores and all the things he really needs someone with sight to help him with for pretty much my whole life and especially the last 7ish years since I’ve been driving, but I’ll be moving away in a few weeks to Ohio. My dad lives alone, and I have a brother but he’s not nearly as close with my dad. I know people will help him food and stuff, but I’m just growing more concerned with his day to day life lately. He spends so much time alone, and it’s just hard for him to ever go out and enjoy life or even the pleasures of social media and stuff. I was looking for a way to help him be more involved in the outside world. He has an Alexa, and a lap top with a screen reader that he’s getting better at using, and he was telling me he wants to get a smart TV. He wants his house to be more of a smart house so he can use things like streaming services, order things off Amazon without someone having to do it for him, stuff like that. Does anyone deal with this kind of stuff? I just wondered what kind of stuff is out there to maybe connect my dad to technology, other people and stuff that can improve his life.
Stick81 6 points 4y ago
From personal experience, Tennessee has great rehab services. I went to the residential facility, but the home visit trainers are great as well. They can help with learning adaptive technology and daily activities. Their services have me much more confidence in my skills, my future, and got me back to work.
JuJutsukaTim 3 points 4y ago
*Legally deafblin, 19 y/o*

Admittedly, as my disabilities are progredient as well, I've become less social IRL than I used to myself. I don't really mind though. It's easier to stay in touch with people on my terms, rather than having to adjust to all the unexpeced situations a club or the like can throw at you. "On my terms" means with an assistant as translator into lormen, tactile sign language or written text, usually, but that's specific to my deafblindness and your dad would probably just need assistance for orientation. I'm also using technology more extensively than most people do -- hobby coder and generally preferring to not rely on other people too heavily.

First of all, smartphones are **awesome**! There are applications like Seeing AI, TextGrabber or KNFB Reader which you can use to scan documents. That's good because that way you won't have to always rely on sighted people for deciphering your mail. Plus Seeing AI has some neat other features, like rcognizing products or money. In general, smartphones embody a whole set of mobile assistive technologies.

If there is some sort of social hub within walking distance (maybe a bar of a village), then I'd probably either practice the way with a sighted person, or teach it to myself using GPS.

One thing I couldn't go without are books. I always rely on my braille display so I can't really say anything about how good an app works with reading out loud, but the books app, Kindle and Skoobe are my go-to books apps. Used to enjoy Audible before my hearing decided to piss off and hang out in Thailand (or whatever it decided to do after divorcing me). There are quite some movies with audio description out there, too, and apps which can add audio description to cinema movies, so there's the opportunity to meet up with a friend and go to the cinema ;-) (Signal, WhatsApp, Twitter, Facebook's Messenger... are all accessible, although only Signal is good in terms of privacy). If your dad dislikes using apps, many mobile web pages are easier to comprehend than the desktop counterparts due to their reduced appearance.

Things like ordering on Amazon are well possible just using a laptop -- provided you're good enough at using your screen reader. I like JAWS for its ability to custom make inaccessible programs accessible, but I use NVDA too, because sometimes it's better at, for example, picking up on dialogs in web browsers. If your dad can get a course at how to use his screen reader, he should. In my opinion, there's nothing worse than having potential at your finger tips and not using it.

Talking about courses, there are people offering courses in cooking, cleaning the house, folding laundry etc. -- at least that's the case in Germany. Sadly I'm not sure what Tennessee looks like.

Adjusting to a progredient disability is a lot of trial and error. In general, you'll need to be very patient in such a situation, both as a person with disability and as the person trying to assist. The best thing both can do is keep an open mind and try new things.

All the best to you.
jrs12 3 points 4y ago
It sounds like he needs some rehab training. If he is motivated there is a lot more he could be doing on his own. Maybe you leaving will be the motivation he needs to see what else he can do with his life. Have him check with a his local Lighthouse for the Blind, Office of Vocational Rehabilitation, and any Blind Associations in the area. He needs a rehab program to learn the skills he needs to use his screen reader better, be safe when traveling, and do all the things you are doing currently. A rehab program can help with that.
WendyIsCass 2 points 4y ago
There are quite a few free screen readers, and the library of Congress has some audiobook stuff for free also. Braille typewriters are a thing, too. First, find out what kinds of independence training is available to him. There are also public transportation for the disabled even in places without regular public transport. Your local social services can likely help with that. Check out the Tennessee chapter of the national federation for the blind and any local resources. My uncle is in a rural area and does absolutely everything he wants to do, including far flung travel. Service dogs may even be available at no charge.

I’m the daughter of a man with RP, and now I have it myself, and have given it to my son. He needs to be reminded that his life is still worth living and living fully.
aaronespinozaca 1 points 4y ago
Is your dad older?
This nonprofit website is run by volunteers.
Please contribute if you can. Thank you!
Our mission is to provide everyone with access to large-
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
©2023 HumbleCat Inc   •   HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.