Visual and hearing impairments
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Going blind

readingfanreadingfan Member Posts: 6 Listener
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?

Replies

  • mikehughescqmikehughescq Member Posts: 5,769 Disability Gamechanger
    It’s not in the right place but that’s understandable and I’m sure Scope will move it. 

    I’ve not had your experience but I’m sight-impaired and deal with a caseload of benefits related sight loss and sight impairment cases. I also work closely with a couple of ECLOs; volunteer for a couple of eye-related charities and work closely with a university as “patient educator” of medical students and healthcare scientists. On that basis I’m going to offer the following:

    1 - how you get around will be up to you. Navigation cane, for which you will get full training, or guide dog or both. Having people around you trained to assist will also help hugely. People live in fear of canes. For many, and I include myself in this, there are huge psychological barriers to using one. People feel as though they will be vulnerable. The opposite is true. Canes are empowering and will engage you with the world. They are one of many ways the invisible becomes visible. Dogs are slightly different. People will want to engage with the dog rather than you and this will apply when the dog is working. It can be a distraction; can encourage poor dog behaviour and you will need to have a strong personality to be in charge of the dog and, frankly, advise people what they can and can’t do with your dog.

    2 - I’m not going to list apps. Rest assured there are lots. Recommendations from others are meaningless really. I’ve seen apps that others think are wonderful or perfect and I’ve understood in a few seconds how that app would do nothing for me. Do your research now and try some out. You won’t know for sure until you have no perception of light so don’t rush to judgement. 

    In terms of devices, keep it simple. RNIB sell lots of things which look useful but they’re often expensive and their functionality can be replicated in apps or phones. Explore phones before you look at stand alone devices which do one thing. The more you carry the more likely you are to misplace stuff. I carry three pairs of specs; an iPhone; an iPad Pro; two canes (people have a habit of having less vision than you and stepping onto and bending your cane); a monocular; a magnifying glass and a peaked cap at all times. Adding in stuff for a dig would only make that worse. iOS devices are far superior to Android for accessibility. Think about apps which can read you stuff now. Not just VoiceOver but things like Dragon Naturally. 

    3 - go get some counselling. You’ve already experience of sight impairment but total loss is different. There is a grieving process to go through and it’s good to talk to someone who has seen others go through that. 

    4 - not relevant in my case but you have lots of alternatives nowadays and in any event it’s good to learn something new as it will stimulate your brain at a time when there is a danger it will focus on one thing only. I know a little and I find it fun to use in small doses. I’m lucky that I don’t and never will need it but there are many alternatives.

  • readingfanreadingfan Member Posts: 6 Listener
    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!

     




  • mikehughescqmikehughescq Member Posts: 5,769 Disability Gamechanger
    You can get counselling from eye charities. 

    PIP is my area of expertise so I’m quite happy to go in record on say that a properly done PIP claim - use https://advicelocal.uk/ to find local advice - should get you enhanced rate of both components on an ongoing/10 year basis. Don’t forget to request a large print form.

    You’ll score 12 points for mobility on the basis that you “Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid.” 

    On daily living the points will be more spread but you should be looking at a fairly straightforward 1e - 4pts, 3b - 1pt, 4b, c or e - 2 to 4 pts, an arguable 5c - 2pts, 6c at minimum - 2pts, 8b - 2pts at minimum and 9c so 4 pts. 

    You should also score on budgeting but DWP and tribunals have issues with that which I won’t bore you with here. 13 points available at minimum. When seeking an adviser you will soon be able to determine whether the person knows what they’re doing by establishing whether they are going to use the word “blind” to name your condition or the actual condition itself. Blind is of course a symptom and not the name of a medical condition!

  • Ross_ScopeRoss_Scope Scope community team Posts: 2,883 Disability Gamechanger
    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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  • readingfanreadingfan Member Posts: 6 Listener
    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!


  • mikehughescqmikehughescq Member Posts: 5,769 Disability Gamechanger
    I’m no fan of Voiceover. I agree that it’s clunky in some ways but long term you will regret it massively if you don’t get a smart phone. 

    The pricing of the subscription for the RNIB device is outrageous compared to what you’d be paying for a smartphone with 100s more apps. My strongly held conviction is that it’s one of the finest examples of what not to get. It reads you The Guardian for goodness sake. Really? No, it doesn’t. Last time I looked it read a curated, cut down sub free version of same. I’d rather have a full sub; choose my own preferences and use one of the many apps that can speak it to me when I’m too tired to read it. 

    I agree with @Ross_Scope that Android is catching up iOS on accessibility. RNIB devices are a long way to behind both. I would say though that if you had used Android all your life it almost certainly is worth trying iOS for a long period. Most sight-impaired users eventually laugh about the number of presses they used to use on Android compared to the lesser number on almost everything for iOS. I have an Android for work and iOS for home. There are simple things like texting which can take me up to 50% less actions on iOS. I would not have believed it had I not tried it. 

    I think it’s also worth bearing in mind that looking solely at apps designed for sight impairment limits your options and that’s all you’ll get with RNIB. Looking through app stores now for other things such as email clients which work best with Voiceover or Dragon etc. will save you tonnes of time latter on. Ditto web browsers and really important stuff like weather apps. People get hung up on navigation as though that’s the only thing you’ll struggle with but having a high quality weather app which speaks to you accurately and quickly is brilliant. 

    I’ve already spoken on canes and understandably @Ross_Scope has echoed that. 

    Registration is an interesting one but once you’ve lost all sight it only offers limited benefits. What’s more interesting is to plug yourself into sports clubs for the blind and similar now. The social benefit out of such things is incredible.
  • readingfanreadingfan Member Posts: 6 Listener
    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.
  • readingfanreadingfan Member Posts: 6 Listener
    Thanks @mikehughescq 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.

  • mikehughescqmikehughescq Member Posts: 5,769 Disability Gamechanger
    You’ll need to apply 3 months after the surgery as only at that point will your new level of need satisfy the 3 months backwards test. 

    On reading you’d score a safe 8b or 2 points. The rest of your daily living points will get you to enhanced rate so anything more than 2 will be a bonus. 

    On phones - lots of top quality Bluetooth options for headphones. 
  • readingfanreadingfan Member Posts: 6 Listener
    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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