Growing Up With Sight Loss

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Growing Up With Sight Loss

hey everybody and welcome back to my channel for this video I want to talk about what it was like for me growing up with sight loss and you know the struggles I had with my confidence as a kid and then talk about what it’s like for me now I thought the technology I used now and the things I do now just give you the contrast between what it was like for me when I started and have developed over the years and I’ll toe bit about you know what my sight condition is along the way I have covered this ground before on this channel of course a few times and in my blog but I want to do this video because it’s gonna basically be a copy of a talk that I gave very recently I get my first public talk about my disability last year to some adults that the nystagmus networks open day but in March this year I gave a talk to children for the first time ever this was primary school children aged around 9 to 11 years old which you know I was very nervous about doing so I’ve never done it before and I was very flattered and surprised to be given the opportunity in the first place so I gave it a go and I’m very very glad I did because it was really really great it was really special to do something like that because the children were just incredible I mean they were really attentive and they enjoyed looking at like my monocular and my sunglasses that I showed them and the speech on my phone and you know the change and the colors of the screen of my phone and they asked some really thoughtful questions afterwards as well so they loved it and I had amazing feedback after it I was blown away by the comments that the teachers and the pupils gave afterwards it’s just incredible so thank you to the school you know who you are I’m not gonna embarrass anyone when naming them but you know who you are thank you very much inviting me it was really good so you know this video is just basically kind of a video version of that talk if you like that’d be a little bit more detail and here that I gave on a day but yeah this is basically what I told the children at the time really so hope you find it interesting and you know useful and perhaps you learn something new about me along the way plus it gives you you know another kind of insight into how I developed and what things are like for me at the moment yeah I hope you enjoy it so when I started off at school I found things very hard to begin with I found it very hard to not do my schoolwork and I found it really hard to make friends and I really wanted to be friends with the other kids you know I really want you know play with them and get to know them and have a laugh with them and you know I liked all the same things that they did as well you know I like TV and music and video games you know playing outside and reading books all that kind of stuff you know I like the same things as everybody else but the kids didn’t want to befriended me like the other children didn’t want to know because they knew I was different but they didn’t really understand why you know they they knew there was something wrong with my eyes but they didn’t understand what was wrong or how it affected me or anything like that and they didn’t really try to understand either like maybe they were just too scared to ask about it or they just thought I was weird or whatever or they just didn’t know they just didn’t understand we don’t at that age so yeah most of them kind of must have thought well Glenn can’t see very well so he probably can’t have any fun you probably won’t be very interesting to hang out where these pointers gonna be sad about it all the time because he can’t see so yeah we’ll just play with other people and that’s basically what they did I mean they didn’t say it in those many words but it’s the impression I got basically so most of them just ignored me and hung out with other people but they were also a few kids who bullied me and teased me you know because they knew I was kind of lonely and I was different and they knew they could upset me easily you know I vaguely remember the fact that they placed my hands on my stinging nettles because I couldn’t see without putting my hands and they tricked me into getting into a shed at the bottom of the playground once and locked me in and yeah just calling me names and things like that as well so I just got really upset and lonely and basically I just thought well you know maybe all these other kids are right you know they don’t want to play with me maybe I am useless maybe I am boring maybe you know I can’t do anything because when you believe that kind of thing know if other people don’t want to play with you then you assume that there’s probably a reason for it so I just thought well if nobody wants to be friends with me now then nobody’s ever gonna want to befriended me this is all my fault because I’m wrong because I’m different then this is gonna be like the miserable life for me like so yeah I felt I’m really down and just had no self-confidence basically I just it was just too scared of her being around other people and kind of getting involved other people you know I was even too scared to put my hand up in class to answer questions you know in case I looked like a fool and just got things wrong and people are the laughed at me I just thought I was really stupid so yeah I just became very kind of shy and withdrawn quiet and lonely really but then my parents got me moved to a different school because they found one for children that can’t see very well like me it’s a little bit further away but no I was able to go there so I went and things didn’t change straightaway no I was still really shy and quiet because you know I didn’t know any different I just thought well you know the other kids aren’t gonna like me much as well you know you know the other kids were a bit kind of worried about me because I had become so shy and quiet and just unwilling to interact by that stage you know so yeah it was a real struggle for

me still at first and there were kids there who teased me and bullied me as well not because of my sight this time because they also had sight problems but just because I was so shy and quiet and vulnerable and easy to upset you know just by calling me names and things you know teasing me and insulting me in general it just got me really upset no they got a kick out of that so yeah I was still being teased and bullied but then things did start to get better bit by bit because my parents and my teachers encouraged and supported me and kind of focusing on my classwork and also trying out kind of new hobbies and interests kind of just getting involved with things bit by bit to see what I might enjoy what I might be good at and I did find that I was actually quite good at some things and really quite enjoyed some things swimming in particular for instance was something I really got into as a kid not just in classes at school I also joined a disabled sports club as well I found I was really good at swimming and not too bad athletics either you know running and yeah one or two field events see I got involved in swimming in particular and ended up going to Garland’s and competitions all over England really and doing really well I ended up getting quite a lot of medals over the years really and in theory I could have actually trained like for the national kind of disabled team at one point that when I was in my teenage years I was given the opportunity to go go and train with them and I kind of went up there once is Sheffield or somewhere miles away and yeah I just didn’t fancy cars pursuing things that far you know it was a it was a long way to travel and be I just know by that point I didn’t really want to pursue it as a professional kind of competitive career or anything like that so yeah quite happy doing something for leisure but not for anything more than that particularly but yeah I did enjoy my swimming I did become very good at it and I also joined the choir at school we had a little quiet right and then once every week or two not group of us in a classroom the only song I read remembers doing his downtown which Petula Clark made famous of course that was good you know I was quite a good singer when I was a young kid apparently I was given my singing parts in school plays as well and other parts so just general kind of roles in school plays really I was given well obviously wants my voice broke and my singing ability what there was just went out the window karaoke I’d be obviously but not professional singing new I got into the Cubs and scouts as well I joined the Cubs you know they went camping and stuff and did other activities and went on to the scouts and I was also doing one of my lessons as well I’ve particularly good at like maths and computers and English and science I was alright as well but getting good marks in those and sometimes even the other children you know it kind of asked me to help him a bit because they knew I was good at it so we could work on things together so by doing all these things now we’re trying all these things out by seeing why I was good at what I enjoyed I was showing myself that I was capable of doing stuff you know that I could be good at stuff I could enjoy stuff which was really important for my self-confidence and it wasn’t making me feel better about myself but it was also showing the other kids as well like the other kids were now seeing that this kid who was like really shy and quiet and useless to begin with was actually doing really well you know winning lots of medals and swimming and you know going out on trips you know the Cubs and Scouts you know there’s some of them weren’t going on because they always tell we’re members of that you know being in the choir again good parks and school plays and you know getting good grades in my lessons and stuff they kind of got more respect for me and they realized that you know my shyness you know my slight loss I wasn’t letting it hold me back I was actually trying to improve myself and I was actually good at doing things so you know I did start to make more friends bit by bit the more I did the more friends I made so no one made friend to the people I was swimming where the people I wasn’t the choir with in Cubs with and people are not acting in school plays with and you know other kids kind of crazy made fun to me as well as they found me more kind of interesting and fun to hang out with so yeah it was a very gradual process kind of building up bit by bit but it did kind of grow month by month year by year as I got older and I got more and more confident made more and more friends and it got to a point where I even made friends with the children who’ve been like teasing and bullying me to begin with because they saw I was doing you know and I’ll do better than them in fact you know I was getting better grades and them I was getting more perks you know rewards and the teachers than they were you know and they realized that they couldn’t call me like pathetic and useless you know whatever else they thought of me because it was no longer true you know I was actually doing very well so they kind of had more respect to me and that he did get to know me and to understand me more and you know they realized they were wrong about me and we became good friends but also I realized I was wrong about them too you know it worked both ways you know I I thought there were just these horrible boys you didn’t care about anybody but no I got to know them and I got to understand why they behaved the way they did towards me and it it wasn’t my fault at all you know the fact that they picked on me was just because I was an easy target but it wasn’t actually my fault I’ve done nothing wrong they had their own problems basically not their sight loss particularly because you know we were all in the same boat in that respect but they had other problems as well I had other kind of personal problems and I began to kind of understand them and appreciate that yeah these problems were affecting them and they needed help in their own wages as I need his help so it wasn’t my fault you know that’s the thing with bullies

you know if you’re being bullied by someone it’s not your fault at all you know it’s it’s something in the bully’s lives that’s causing to behave like that you know they were happy with their life you know if they had plans to do and they were just happy with how things were and everything they wouldn’t need to kind of fill their time by picking on people bullying people and things they’ve obviously were issues of their own whatever they may be that they should really get help and support with you know just top of behaving like that see how I made basically loads of friends over the years and ultimately you know there was a big lesson here for me and for all the other children as well that kind of really ingrained kind of over the years it was important I learned it was important that the other kids kind of learned it as well and that was that just because I have a disability just because I’m different just because I’m wrong with me it doesn’t mean I can’t do anything it doesn’t mean that at all you know the truth is I can do pretty much anything anyone else can do I just have to do it a bit differently that’s all I could do the same things as everyone else I just have to do them a bit differently you know that’s the message I kind of want people to understand us know the message I wanted the children to understand that all I went to I’m just a bit different I have to do things a bit differently part from that you know part of my eyes I am a completely normal person I still have feelings and emotions I still enjoy doing things I still want to have a laugh I still want to make friends and everything else just the same as everybody else I’ve just got slightly dodgy eyes which means I have to do things a little bit differently that’s it and it hasn’t stopped me achieving things like I said because I did very well in school you know I made lots of friends by the end of it I was much more confident I did well in my GCSEs I went on to do a levels as well and got a degree at university and then six months after leaving University I was lucky enough to get a job as well which I’ve now had for over 13 years you know it’s been going really really well you know and even for my colleagues there you know it was a learning experience for them as well because they never met anyone like me before but I knew now that I just had to show them what I could do you know show that I could do the work and help them to understand that just because I’m disabled I can still do things you know because they were naturally worried about me at first you know how much could I do and would they be able to get along with me would I be to Shia whatever or would they say anything wrong you know they didn’t bully me or anything like that there are really nice people and obviously they still are you know and just as they they just relaxed around me got more comfortable around me and I relaxed around them we’ve just become really good friends really close you know I didn’t take long to do that so so yeah there is a learning curve you know with you know quotes normal people you know non-disabled people because you know if they’ve never met anyone like me before they don’t if I have met another disabled person before it is something no it is something different it is something they’ll feel uncertain about so you know I just had to make them comfortable around me show I had a sense of humor show I was capable of doing things and yeah things have worked out fine and that brings me to today really you know I’m doing a lot now you know I’m meeting a lot of new people trying a lot of new things and it’s basely down to what I’ve learned over the years you know I’ve learned it’s just important to try new things know not to be afraid to give things a go not be afraid of just who I am and not be afraid of what other people think of me you know what other people feel comfortable around me it’s fine there might be an initial bit of uncertainty initial bit of awkwardness but once people get over that and they realise they understand that you know I’m a normal person it’s fine you know just giving people that bit of confidence you know to interact with me as well as me getting to interact with them it works both ways so in that vein I now want to tell you like some of the technology I used today to make things easier for me and tell you a bit about where and I conditions in the process so I have two eye conditions and the first one is called aniridia which basically means I don’t have an iris in my eye that’s the colored circle around the pupil you know if you say you have like blue eyes or green eyes that’s what you’re referring to the iris that colored circle I don’t have that and it’s got to do with color actually that part of the eye actually controls how much light enters your eye because it makes the pupil bigger or smaller depending on how much light you need you know if it’s really bright then the iris will shrink the pupil so you’re not too blinded but if it’s really dark the iris will expand the pupil to let in as much light as possible to try and help you see but my eyes don’t adjust like that they just a tiny bit but it’s a – a very very limited extent so the main problem I have because of not having an iris is when I’m outside in the daylight when there’s sunlight the Sun is really really really really bright for me like much more than it is for normal people there’s a lot more Dallaire that’s what normal sunglasses aren’t really good enough for me and then even if there’s no Sun out you know and if it’s cloudy it can still be a bit too bright for me because of the glare that’s outside especially off bright surfaces like you know bright walls and things and even off the clouds themselves and can still be a bit too bright still bit too glarey for me and then even in the snow we’ve had recently you know you had a couple of periods we’ve had quite a lot of snow recently and you know even that can seem quite glaring bright to me because it is bright white in color you know it’s lovely to look at I know I love snow as much as anyone else but it can’t layer at me and can still seem quite bright so

basically when I’m out and about in the daytime I will often wear special sunglasses I’ve got green tinted sunglasses let me just take off 75 80 percent of the talero I think it is something like that it just makes it a lot easier for me to say and I’ll be wearing the medon if it’s cloudy so it may look odd if I’m wearing sunglasses like on a cloudy day but I need to because it just makes things a lot easier it’s just a simple thing just wearing different prayer glasses I do struggling the dark as well though you know if I’m going out at night you know to see some friends or whatever or to go see a show it’ll be dark when I coming home and yeah I will be very careful to stick to world lit streets and just kind of walk a bit slower just kind of take me time just to make sure I’m not tripping over anything I don’t use a cane or a guide dog at night because I can see well enough not to use one but no I am still a little bit more careful you know sometimes I’ll tell other people that are walking in front of me you know if they’re going in the same direction I’ll just follow them and see if they’re dodging any obstacles a bit yeah I’m fine usually you know I always plan out my routes and advance anyway so I kind of know what I’m going and yeah I’m just a little bit more careful and just stick to areas that are well lit and if I’m going into a bar or restaurant or something and it’s kind of very dark compared to the outside then you know I can be effectively blind at first until my eyes kind of adjust in what little way they can to this new kind of dimmer environment that can be quite hard as well but yeah you know it’s not causing me a major problem it’s the daylight that’s more of the issue you know I mean lighting and like indoors like this artificial light is fine you know I don’t have any problem with this kind of light but it’s like the outside light the daylight that affects me the most and then also on computer screens and mobile phones there’s brightness there as well like if you think about when you look at a word document or a website or you’re looking through your list of files the background is generally white and that is very Larry to me and I’ll have to really concentrate hard to read things that are on that white background and yes I could turn like the contrast and the brightness down on the screen but then that turns down everything so everything is harder to read anyway then so instead I basically invert the colors so instead of having a white background black text I’ll make the computer show me a black background with white text instantly the black background has no glare on it the white text stands out much more clearly and yeah it just makes things a lot easier to read up and kind of just focus on the screen a lot more easily read things more easily it works wonders it just makes a huge difference to me so I’m glad I can do that on the computers and on my phone as well 3 does help a lot and then the other condition I have is called nystagmus and this basically means my eyes move and wobble about all the time I have no control over it things aren’t moving to me now I’m not seeing the world like this the world does seem still because my brain is kind of compensating for it sting for it but because things are basically moving to begin with there’s no time to focus on things properly you know so things are distant you know I can kind of make out the basic shapes of things in the distance and basic colors and things but I can’t see detail I can’t read writing a distance you know when I was in the school hall for instance doing the assembly I could see the kids all sitting in front of me but I couldn’t see their faces no so they could have been smiling or frowning or yawning or sticking their tongues out picking their nose is I don’t know whatever I wouldn’t have noticed so yeah I couldn’t judge River though enjoying the assembly or not which made the feedback all the more amazing that I got afterwards it affects me mostly really when I’m out and about because I can’t see science you know I can’t take bus numbers or signs on light you know the tube trains the underground and I cannot see names of shops and things and street names and all that kind of stuff things have to be close to me in order to read them or really large you know so some really large shop names I can see but generally things have to be close up to me in order to see them so basically the way I get around that is to use a binocular it’s basically little telescope you know if you think about binoculars or binoculars now you’ve got the two things you look through two lenses so a monocular it’s just one of them I’ll just use it one-handed and you know I can change the focus and just read things like street signs and tube trains and buses and all sorts again it’s a simple little thing that makes my daily life awful a lot easier so you know it’s really really handy to have that you know in my pocket or around my neck you know not computers I can just zoom things in I can make text bigger I can get computers to speak to me you know I get to read things out in speech I can ask Siri questions on the iPhone I’ve got an Amazon echo as well that I can ask questions to so I can use speech you know talking to the computer having it talk to me if I want to when it comes to books I prefer to listen to audiobooks rather than reading physical books because reading physical books is just very tiring on the eyes so it’s far far preferable to listen to a book if I can I’ll also use audio description when I’m watching things I can get it on the TV or I don’t use it on the telly very often because I can sit close enough to the screen anyway but you know occasionally I’ll use it if I really can’t what’s going on audio description really

comes in useful in the cinema or the Esso in particular because you know I can’t get so close to everything then I mean no cinemas they’ve got massive screens but you know it’s still not easy to see what’s going on sometimes no things are happening really quickly or if there’s something small happening like a small prop that’s important to the plot being kind of passed around or if the scenes really dark or anything like that you know I haven’t got the luxury of being able to rewind it I would have at home with the TV or a DVD I just kind of watch it in the cinema and kind of just hope I don’t miss things so being able to use audio description really helps and again in the theater audio description is really helpful to me for me to understand what’s happening on the stage basically what happened is you get the headset you get pair of headphones and you know a little device attached to them that you then received the audio description through so in between when characters are speaking you basically get another voice saying you know what’s happening giving you important information perhaps you know what people are doing passively using your particular prop was important to the plot or if there’s a scene change you know where are they now and yeah all this kind of information I mean before theater shows you actually get like an introduction as well a 10 to 15 minute introduction kind of setting up various aspects of the show you know the characters and some of the key scenes and things like that to kind of get you ready for it so that’s really useful and listen to that during the show but then also the other bonus about theatres is that I can go on touch tours as well for these audio described performances so before the show even starts like kind of hours before I’m able to go up on the stage itself and have a closer look at steps and the props and the costumes and stuff to really get a proper closer look at it get hands-on with it so really understand what everything looks like and feels like and you know what represents when it’s used now I get to talk to people who kind of work on the stage and members of the crew and sometimes even get to talk to a few of the actors you know if they are able to go at their time you know before that I have to go and get ready for the performance so it’s a real privilege to meet the actors when it happened you know I have done a few times or a few plays so it’s great when they’re able to give it their time to do that so you know that’s really really cool it just again makes an awful lot difference because then when I’m hearing the order description during the play I can think well I’ve touched I’ve looked at that and remember I can recall it and just really visualize it much more clearly and after use my monocular if there are things I really will look at that’s happening as well you know if the order description says something’s happening then I know what to look for then so yeah that’s really really useful and that’s it really that’s basically in my eye conditions and the bits of technology that I use to help me live my day-to-day life so it’s quite easy for me like I said earlier you know having a disability having a problem with my eyes hasn’t stopped me living a happy successful enjoyable life you know I’ve got friends I’ve got a job I’m able to go out and do all sorts of fun things and yeah I’m just really happy you know I’ve had my condition since birth so I’ve never known any different anyway and then I don’t know what normal 20/20 vision is could never had it this is normal to me as far as I’m concerned so I’ve grown up with it I’ve learned to be more confident I’ve learned to live with it I’ve learned to just get on with my life and enjoy life you know my eyes type doesn’t stop me doing that and I appreciate that some people don’t understand that to begin with so that’s why I’m doing videos blogs like this and just in general kind of showing people that I can do things that I have got a sense of human I can have fun I want to be friendly I want to just do the same things as everybody else because I can I can do the same things as everybody else I just do them a bit differently sometimes first of all it is I’m still a normal person I still have normal emotions and feelings and desires and interests and all the rest of it it’s just my eyes are a bit dodgy and because of that I just do things a little bit differently just too many things easier for me simple as that see I hope you found it useful and interesting and insightful and thank you very much the school for inviting me along to do the talk for them it was very very generous of you and I’m glad it went down so well thank you to everyone who’s watching this you know I hope you enjoyed it as well if you have any questions or anything else for me to do a video about then leave it in the comments you know I’m always happy to get comments from you click the like button if you enjoyed it as well and subscribe to my channel so you get notified of no new videos that I release so yeah thank you very much for watching I hope you enjoyed that and I will see you for another video very soon bye