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Going blind

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readingfan
readingfan Community member Posts: 6 Listener
edited February 2021 in Sensory impairments
Hi,

I hope this is in the right place - please feel free to move if not!

I have been told in the last week that I will need to have my eyes removed (enucleated) because of a health issue. I have had  limited, but reasonably good, vision for my whole life so it's not entirely new to me but it will obviously be very different.

I am in my 30s now, so I was wondering if anyone had been through a similar experience. Some initial questions I would have are:

1. How much are you able to get around if completely blind? Do you use a cane/dog/guide etc? 
2. Are there any apps/devices you use in particular to help make life easier, such as accessing a phone/computer or getting directed around if out?
3. Are there any tips in particular you would offer for setting the basic foundations initially? It's hard to know exactly where to begin! Is there anything you started using later that you think would have been helpful at the start?
4. Did you learn braille? If so, how did you go about this and how long did it take you?

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  • readingfan
    readingfan Community member Posts: 6 Listener
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    Thanks so much for such a comprehensive answer! 

    I know what you mean about the psychological approach to a cane and I've kind of been in that position before, although I've generally been able to manage without one. I fully accept that it will be necessary now though. I've never got on so well with dogs and am wary of what you say about people coming up to it!

    I've been looking at the possible benefits I might be entitled to, although it's quite a lot to take in! The PIP tests look difficult to fully measure considering I don't know exactly what I will be able to do or not do, or how long it might take to improve in these areas!

    I will consider apps carefully. Things seem a lot better now than 10 or 20 years ago. I already use an Alexa a lot for audibooks, weather, etc. and I found I can use voiceover, speech and audio description for plenty of things on my BTV (although by no means everything and a bit inconsistent - still some way to go in that regard!) 
    I imagine I'll have to get a new phone as my current one is very old and doesn't have any accessibility options really. 
    I've tried doing a few things on my laptop with the accessibility options but think I really need to look at more dedicated apps to see how widely I can use the laptop I currently have or if I need something more specialised.
    I think I can get counselling and social service help from the hospital. My health situation has developed quite quickly so I've not had an appointment with them yet and eye removal will probably happen in next few weeks so it's all moving quite quickly. 
    Yes I think learning something new s sensible and hopefully will help me feel like I'm moving forward. I believe you can get braille phones and specialised braille keyboards/screens but think I'm some way off that point!

     




  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
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    Hello @readingfan and welcome to the community! 

    I have moved your discussion to our visual and hearing impairments category.

    I'm sorry to read about what you're going through, I can't compare it to my situation but I've had sight loss since I was 7, so it's pretty much been a constant factor in my life. I'm now in the severely sight impaired category.

    I would advise registering your sight loss with your local authority, it's always a good starting point for determining what help and support you might be entitled to, and it provides you with proof of your sight loss in the event that you need to give proof.

    1. How much a person gets around will vary depending on many circumstances. Obviously having sight loss brings it's limitations and barriers but with the right supportive equipment and training there's no reason why a person shouldn't be able to navigate their surroundings to a good enough standard.

    Personally, I use a long white cane, which has been a super help since I got it a couple of years ago, Prior to getting it I was nervous when going out, but the cane has made me feel more comfortable and confident, it has also helped to make people aware of my sight loss without needing to be told. I'm not a guide dog user, mainly because I consider myself to get along fine without one and I'm not a huge dog lover, but they are also a great option. Worth keeping in mind though that it can take a long time to actually get a dog after initially expressing interest.

    These assistive aids are a huge help, but it's also worth ensuring that you have people in your life that you trust, in the event of circumstances where you need assistance to do a certain task.

    2. I've sold my soul to technology, so this is an area I'm particularly enthused about. I think a massive part of what will help you going forward may depend on what you are using at the moment. Taking a phone for example, many people will say that iPhones are the more accessible choice, but if you have used Android your whole life then it might not be worth learning a new operating system at this stage - and besides, Android does have many accessibility features for visually impaired people, and it is catching up to iOS.

    What apps and software you use will depend on what platforms you use most of the time, a good place to start would probably be learning whatever magnification or screen reading software your gadgets have built in. 

    A few helpful resources:
    Smart speakers such as Google Home and Alexa are a must have in my opinion. Obviously they aren't essential for everybody, but for me I find being able to speak and listen to something to get important information like weather, news and research to be so much more efficient than manually doing it.

    3. Honestly, you're already doing what my biggest tip would be - asking a community of people with lived experience and seeking support. I spent years thinking I could do things on my own and figure everything out myself, but the reality is that is a hard way to do things. I'm not saying that independence is unachievable, because it absolutely is, I'm just saying that using the knowledge and support of your peers can be a great way to build connections and gain valuable tips on how you can go about solving any issues. 

    4. I've been on a waiting list to learn braille for nearly two years now. My experience, which is also that of many others I speak to, is that it is very hard to actually get lessons to learn it. Of course it will vary depending on what is available local to you, but from my personal experience I find that investing my time in learning how to use various kinds of technology has served me better, as technology is where everything is heading. 
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  • readingfan
    readingfan Community member Posts: 6 Listener
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    Thanks everyone for your help!

    I don't even have a smartphone at the moment! I've tended to use an ipad/laptop for tasks other than simply calls/texts as I was comfortable using them and found it easier to read the screen, but obviously that won't really matter soon.

    I tried out a friend's iphone during the Sir (as well as the ipad that I currently have)i and voiceover functions but found it a bit frustrating and clunky, although perhaps this is just the expected learning process. It seemed a bit counter-intuitive to me that you had to tap so much on the screen to do things when I won't be able to read the screen! It took about half an hour to get it to read one BBC News article to me which doesn't seem too efficient, even for a beginner!

    I'd ideally like to use devices that are more like an Alexa (I've not used Google Home) where you largely just speak to it and it speaks to you. 

    I've looked at the RNIB website and the 'In your pocket' phone sounds plausible - I don't know if anyone has used that before?
    I like the fact it's pretty much 100% voice activated (with the press of one button like an Apple TV remote) and that you can press the button on your headphones if you're out and about rather than having to physically take the phone out (which I think I might be a bit apprehensive about, in case I dropped it or in rare cases if it got stolen.)
    Having unlimited calls and access to podcasts/talking books/newspaper articles would also be good. The Be My Eyes app is included and there is something that can tell you your location, although it's not clear to me at this point how useful it would be for getting to places in terms of directing me, so I need to explore that a bit further.
    It's also not a smartphone so a bit more limited in using other apps, email, Facebook etc. (which isn't necessarily a problem if I can get these on my laptop!)

    I've also looked at the Synapptic Samsung option on the RNIB website. It seems you have to tap this more (although not sure if you can completely voice activate it) and I think you might have to physically take the phone out if you want to use it on the train or walking around etc (which also takes up a hand, as well as the points I made above!)
    It does have wider functionality with apps and so on though and email/Facebook.

    I've had a brief look at accessibility settings for a laptop (I currently use a Windows 10 machine) but the VoiceOver/Narrator don't seem terribly helpful so far. I can do small steps but haven't managed anything more complex yet - e.g. if I Google 'BBC' it comes up but I can't manage to clock on it and open articles. 

    I almost need some sort of braille screen to feel the basics and then voiceover/narrator to kick in then!


  • readingfan
    readingfan Community member Posts: 6 Listener
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    I agree the pricing of In Your Pocket is excessive, the more I think about it.

    In an ideal world, I'd have chance to try out a few different models and have some time to learn them but the fact of Covid and the immediacy of which it's all happening makes that difficult. 
    I guess it is a balance between me wanting something I can at least do the basics with from Day 1 (I expect I'll be getting a lot of calls and stuff around that time, both medically and socially) and recognising it will probably be a learning process for me.

    If there was a Smartphone that was pretty much fully voice activated and which I didn't physically have to take out of my pocket to answer calls when out in public (I'd like to just press a button on some headphones and speak) then I'd go for it but I've not found the best match yet. We're going to look some more today.
    We're looking at the ultracane too.
  • readingfan
    readingfan Community member Posts: 6 Listener
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    Thanks @Username_removed I've just been having an initial look at PIP, although haven't been able to go into detail yet with everything else going on.

    Should I be aiming to apply beforehand or wait until the operation has actually happened and I've lost vision? 

    It seems a bit counter-nutritive because I believe they won't backdate any money before you make the claim so you need to do it quickly but I presume there will be things on the first day or two after completely losing vision that I won't be able to do that I might after a month or so, and equally some things I haven't anticipated being a problem that I find are when I come to do them. (I have been told it will take a good few weeks to recover from the surgery anyway so it's not as if I'm likely to be up on my feet and otherwise good on day 1.)

    Also, what does it mean when it speaks about 'reading and understanding'? Obviously I won't be physically able to read but if a computer or another person was to read a sentence to me then I'd understand what it meant, so I'm not quite sure where my level would be there.

  • readingfan
    readingfan Community member Posts: 6 Listener
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    Does anyone have experience with using sensory devices along with a white cane, such as an ultrasonic device to detect objects below waste height?

    i'm very tall so thinking they might be useful but not sure how reliable they are and what is the best to get. The BuzzClip was suggested to me and is around £250. Things like the We Walk or Ultracane look to be around double that. There seem to be some devices like iGlasses and a smart cane from India that are around £100. 

    I'm not sure if any are useful/accurate enough to be worth several hundred pounds? But equally I don't want to get something that is cheap but of no real worth at all.

    On another note, I've watched a Youtube video regarding the letters of the alphabet for Grade 1 braille and I'd like to try out some practical examples of that and perhaps move onto Grade 2. I don't think it's worth doing a full course at this stage, and seems like it takes ages to get on anyway, so am happy to teach myself and might give my brain something to do whilst I'm in hospital for the operation! Does anyone have any particular books they'd recommend for learning/practicing braille by touch? I can probably learn quite a lot of the theory through Youtube videos or internet reading but I'd like to put it into practice by touch too.



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