If you could give a message to people who’ve recently lost their sight, what would you say to them?

[long pause]

Cor! That’s a tough questionThat’s a real tough question.

Why is it tough?

Because when I lost my sight, the last thing I wanted to hear from anyone was you know you’re going to be alright. You know, like you know. it’s going to be all right. Like everything’s going to be, like everything’s going to fine like, you’ve still got everything, if you know what I mean.
it’s the last thing I wanted to hear from people. I don’t know. I didn’t want anyone’s pity. I didn’t want anyone to feel sorry for me and… it’s tough to, I don’t know, sort of give advice on something like that. Even though I’ve been through this, and I know, I know some of the feelings they’ll be feeling I won’t know, I won’t know everything these guys are feeling like.

Maybe if we think about it in a different way. But, I suppose, how would you sum up your experience maybe?

Yeah. You know, I’ve lost my sight and it’s not an option for me that I’m getting sight back; I know I’m not getting my sight back. So I can either throw in the towel and be miserable or I can get up, I can be motivated. I can do what makes me happy and I can still seize life. I can take every opportunity I need to take and you know, be happy where it’s possible for me to be happy. I mean it’s still life and I’m still going to have the usual ups and downs that life brings, but, you know, I’m alive and happy to be here. And I appreciate being alive.

Do you feel disabled?

On a day-to-day basis, I’d say no. I’m most, I mean I know there’s a difference now and I know, I know I’m less able then I was before. But for me to say I’m disabled it seems a bit extreme. It seems like it’s more than it is. Like I can forget I’m blind sometimes, like if I’m, if I’m talking to my wife, I’ve got a really strong image of her in my head and like I can, I forget I’m not seeing her, because I can hear her voice and I’ve built an image of her in my head and she’s next to me, and I’m looking in her direction and I feel like I can see everything around me. My head, my imagination like lets me feel I’ve never seen this house, or I’ve never seen I’ve never seen this sofa I’m sitting on or anything like that, but I feel I can see it. I can see it in my head using my mind. And life’s more difficult for me now. But to go as far as to say I’m disabled. I don’t know, it’s quite difficult for me.

And I mean if it was a different injury as well like maybe, like if I was in a wheelchair or something like that. Like I said before, gauging people’s reaction of like their face or like if they, if they can’t even look at you or anything like that, you can tell it’s probably something to do with my disability if they struggle to even like not be awkward around me. But if they are just disinterested, just they’re not interested in like who I am if you know what I mean, like it might be that but I just can’t see it, because I can’t see the way they react to me.

And it’s got a camera on it, in the middle. I can show you it in a bit. it’s got a camera in the middle and it’s got a wire that loops down onto your tongue and on the tongue it sends off electrical signals and it builds like a two dimensional picture of what’s in front of you on your tongue. So everything that’s like in contrast so any black on white, or any dark shades on light shades. Like it will paint the two dimensional picture on your tongue and after a while, your tongue, you learn to sort of see this two dimensional image there. So, you know, if I was looking at the table there’d be that shape on my sort of tongue, if you know what I mean and I’d be able to see that there and. Like, people like, like women especially like my wife’s got dark hair, so I can see the outline of her hair. And I can see like where her face would be, and like the outline of her hair, like going down. it’s quite cool. it’s a new piece of technology that’s being tried out, and luckily I got on the trials for it. Yeah, it’s really good and hopefully it will have, hopefully it will take off in the future. Like it will really get better. it’s in the crude stages at the moment, but it’s still quite a handy bit of kit.

I mean this is the sort of test version of it. So I got this about September and I’ve been using it a bit. But there’s a newer version coming out with a few more points. So, like the pad, the pad that you use here has only got so many electrical points that it can put onto you. Like I think at the moment it’s on 400 and the next one coming out’s 600. So it’s just a little bit more detailed. And yeah, it takes some time to get used to it and actually know what you’re, what you’re seeing with it. Because it’s like a two dimensional image, black and white.

Hard work. it’s going to be, it’s going to be hard work. But you know. it’s justit’s going to be hard work, but just so worth it. I’m not regret a minute of it. I just cannot wait for him to be here. Join our family.

Yeah, okay. That’s good. Yeah, what I was going to ask you was have you spoken to St Dunstan’s or anybody like that about you know, when the baby arrives?

Yeah, we they’ve booked for us, I think it’s an antenatal classes and it’s, basically, they’re going to focus on like baby care with being visually impaired. So, because of my visual impairment they’re going to focus on like handy tips and tricks and, basically, good ways of looking after the baby from a visually impaired perspective. And that’s just going to be so handy for me. it’s just going to be absolutely immense.

And is it something you’re concerned about?

Yeah. Of course. I mean being a parent you’ve got 50% of the responsibility and I want to, I want to put in as much work as I can. I mean, it’s not fair on Em to have to deal with me and deal with our son and it’s too much work. I need to be able to look after myself and take part in looking after my son as well. I mean I’d be proud to be a father, and I need to, I need to take responsibility when I’m doing that. There’s no excuses, like being blind isn’t an excuse not to, not to help out and do as much as you can for, for your child.

Is there anything about living in London that you think has made things a bit more difficult?

I mean, London itself is a massively old city, so the, the pavements and stuff like, it can be…it’s so weavy and windy and the streets coming through at every angle. I mean like it’s not like Barcelona, where it’s on like a grid square system, like every block is like just squares and squares, everything’s right angles and that so I mean it’s a little bit, it’s a little bit tough at that but there’s nothing that can really be done about that. Its, I’d hate it; I’d hate London to be a grid square city. it’s such a beautiful city. So beautiful the way it twists and turns, but it just makes things a little bit more difficult.

I also had my own issues to deal with. I just had to, you know, deal with stuff myself, just in my head and sort myself out. And, St Dunstan’s again. I mean they bring you through those doors and they introduce with a bunch of buys who have been through exactly the same thing as you, and they’re all ex soldiers so they have, they have, you know, the Army banter and they, they just don’t let you get down. They just help you so much deal with it. I mean there’s so many people to talk to there and people with a real understanding of what you’ve been through. Yeah, the camaraderie and the banter and everything like that, is just, it’s just amazing. it’s irreplaceable.

And how did, you know, other people in your life – family and friends –

hm.

How did they sort of come to terms with it?

It was tough on everyone. I mean, the majority of people in my life, and my family saw me, and the first thing, well before they saw me, they felt so sorry for me, and they were absolutely devastated for me. Like, they were sad, because they thought I was going to be sad and that was, that was just making them like really sad and depressed. But they saw me and me being positive and when they see that it helps them. it’s, they feel like they don’t have to be sad for me and I hope that’s what I get across to them. I mean, I can tell they’re upset with what I’ve been through, but they love me and as long as I can show positivity and you know, deal with my situation then it helps them get through.

And are you consciously, or have you been consciously more positive than you felt for them? Or have you sort of naturally been positive?

A bit of both really. I mean I have, overall, since it’s happened – it happened about a year and a half ago – I would say the majority of time I have been positive, but there are weeks when you just, you do just feel completely down in the dumps, and it’s tough and, I mean, you can’t really hide that from the people you love. it’s too difficult to, they know you too well to really hide it. So it’s best just to get it out there and express your feelings and hopefully they can pick you back up and make you realise that you know, life’s good.

Just careful, they teach me to be careful when I’m cooking. Teach me different techniques and like basically different…it’s little things like if you buy a microwave, buy a microwave, like if you’re not going to get a talking one, which they do have talking ones now that help you out, but if you end up getting everything that talks to you, it drives you, it drives you crazy. If your machinery just talks to you all the time, it just drives you mental, so I decided to get a, an old school microwave with like the turn dial and I just stick bump-ons, like little tactile markers where the numbers are.

Right.

And so I know how long I’m putting it on for and what temperature and everything like that and… They, because it’s such a large community with everyone doing different things, there’s so many handy little bits of advice. Like they taught me how to use a computer, what software to get, the, the Apple software, how good that is and all the accessibility features, and all that sort of stuff, that’s just handy little tips and tricks, and mobility – being out and about. Oh my God that’s what gives me my independence. I can walk down the street on my own and be safe. I can walk to the shops, do the shopping, help out my wife, I can walk to my school on my own, get the bus.

Yeah. And what has the staff been like at college?

Fantastic. Yeah, I’ve got a learning support worker and she’s basically my scribe and yeah, she really, really helps me a lot. The teachers are really great with me. I mean, I chose to go to a school that’s not geared towards disabled people and geared towards visually impaired. it’s just a standard college and I mean they’re obligated to make the work accessible for me and give me the same education as everyone else going there. And they’ve done that, they’ve made it totally accessible for me.

And why did you choose that school, you know, that college as opposed to somewhere that may have had more experience or may have been geared towards people who’ve had various needs?

Yeah, there are, there are specific like blind colleges and everything like that and, in a way, it would be okay to go to them and again be with people who are going through the same sort of thing as me and it’d probably be a bit easier to access the work, but I want to do it the same as everyone else. I mean I can access the work. I mean through everything I’ve got, I can access the work. I don’t need specialist, like Braille forms or anything like that, and the subjects I’m doing, the subjects I’m doing are quite audible. So I’m doing English literature at the moment, and that’s like, it’s like a massively audible subject. I mean everything can be, all the books and texts can be converted to audio and everything else is like discussion and yeah, it’s no diagrams or anything like that. So it’s really, really easy for me to access. Science would be something I think I would struggle with, with the diagrams and I’d possibly have to go to a more specialist school for that.

How would you describe the emotions you experience?

Tough. it’s almost a physical pain. No, it’s kind of like being heartbroken sometimes. Like you’ve, that you’ve lost your sight, you know. You get a feeling in your stomach and you’re just, oh God, you know, .You start asking questions like, why me? And all this sort of stuff, and you know, it’s just part of the process of grieving of grieving, I suppose. You know, you get that tense feeling round your heart, and yeah, nervousness, anxiety, depression. it’s just, it’s part of the grieving process and I think it’s healthy to go through that. I mean if you went through something like this and you were upbeat and positive the whole time, I think, something might be broken in your brain, [small laugh] I think. Yeah, I think it’s quite healthy to feel these feelings sometimes.

And it’s not massively complicated, but obviously things are a lot more fluent and easy if I’ve got someone who knows my routine and knows exactly what I need and what to look out for. So like when I’m with Em and I’m walking about like I’ll hold onto her arm. I’ll have my long cane with me and I’ll tap away to feel the gradient and stuff like that, and make sure I’m not walking into lamp posts, but she’ll be like Oh there’s a kerb coming up, like kerb down, walk across the road, like kerb on the way u. And she’ll know exactly what obstacles and dangers to like flag up with me and stuff like that. Some people can, can go like and not tell me anything and other people can go massively the other way and just be like every speck of dust on the ground. Jesus there’s a leaf in front of yo and you know, like that’ I don’t care if there’s a leaf in front of m. Oh yeah, there’s a stick coming u and I’m thinking, Jesus is there a branch across the road or something? And I step on it and it’s like the size of my finger.

A twig.

Yeah, it’s like this little twig that snaps underneath my feet, and I’m like You’re warning me about that? Are you crazy And yeah, it’s, I don’t know it’s just a learning process for everyone.

Yeah, I’m on mobility benefits. So at the moment my car is paid for on the Motability scheme. So I don’t get mobility benefits anymore, which was like a certain amount of money that I was given to get around for transport, sort of like for cabs and train fares and all stuff like that. And I don’t get that any more. What they’ve done instead is they’ve given me a car and basically Em can use that and drive me about and, and do the stuff I need, basically to get me about and yeah, it’s so much easier. And you get, you get like a new car for three years. And they take care of the insurance, and they take care of like the tax and, oh what else and basically paying for the running of the car. All I’ve got to pay for basically petrol and yeah, it’s so handy. It just gives me my freedom again. Really, really handy for getting about.

I just want to get across to people who aren’t visually impaired… Since I’ve lost my sight, it’s, for certain people, it’s difficult for them to talk to me. They, they won’t come up and engage me or like, like on a social level. I mean this is happening – it’s really been pointed out at college more than anything. it’s, at certain times like, like people will be less inclined to talk to me. Maybe they feel awkward or maybe, yeah, they just don’t know what to say; they’re worried about putting their foot in it or whatever. But, it’s really difficult because I struggle to engage people because I can’t see where they are, or whether they’re busy, or whether they’re doing something, and you know, it’s good to make an effort, don’t, if you see like a visually impaired person, you know, like in a social situation, I mean you shouldn’t really hesitate to go up, because I’d always appreciate someone coming up to me and talking to me and you know, just making the effort and if I felt like talking to them, fair enough, I would be like, You know what, not right no. But I mean it’s good to make the effort because I know it’s, it’s a dark intimidating world when you’re blind and the social side of things has been quite difficult for me.

I just want to get across to people who aren’t visually impaired… Since I’ve lost my sight, it’s, for certain people, it’s difficult for them to talk to me. They, they won’t come up and engage me or like, like on a social level. I mean this is happening – it’s really been pointed out at college more than anything. it’sat certain times like people will be less inclined to talk to me. Maybe they feel awkward or maybe, yeah, they just don’t know what to say; they’re worried about putting their foot in it or whatever. But, it’s really difficult because I struggle to engage people because I can’t see where they are, or whether they’re busy, or whether they’re doing something, and you know, it’s good to make an effort, don’t, if you see like a visually impaired person, like a, you know, like in a social situation, I mean you shouldn’t, you shouldn’t really hesitate to go up, because I’d always appreciate someone coming up to me and talking to me and you know, just making the effort and if I felt like talking to them, fair enough, I would be like, You know what, not right no. But I mean it’s good to make the effort because I know it’s, it’s a dark intimidating world when you’re blind and the social side of things has been quite difficult for me.

What exactly has been difficult? Just what you have described now?

Yeah, basically what I’ve just described. I mean striking up conversations with people and that, and you know, getting people to… My, I don’t know, it’s difficult. I suppose I might be asking too much because not everyone, unless you know someone who is visually impaired, I suppose you don’t really know what they’re going through or what, what to say.

I have a, I have a long cane. I’m applying for a guide dog, they’ve been really helpful as well. Like, Guide Dogs have really helped me with my mobility recently. Like they’ve really helped me nail the route to and from my college. So I’ve been doing that independently. I can do that independently whenever I want now. So I can turn up to college on my own, I don’t have to be on someone’s arm all the time, and it just, it makes you go from feeling completely disabled and just needing someone around you all the time, to, you know, having independence, being, being free.

Okay and so how did, how did you go about learning the route to college for example?

When St Dunstan’s came down, I have a ROVI, which is a rehabilitation officer for the visually impaired, and he went through the route first and assessed everything. Mobility is what he’s trained in; he’s trained in teaching people mobility, so he knows all the best tips and tricks for helping me find my route. He planned out a route for me and I basically follow that route, and Guide Dogs have reaffirmed that and helped me get it nailed down now, and I know exactly. So, I’ll go along with my white cane and I’ll look out for markers, so certain lamp posts in certain places I will make a different noise when I tap my cane against them and people can hear me coming from a mile off, because I’m just tapping, tapping different big metal objects as I’m going down the street and you know, waking up all the neighbours at six in the morning or, or twelve at night when I’m coming back from the pub.

Tapping away.

Yeah, tapping away and stomping down the street.

Okay. Right I didn’t realise that that would have been, you know, how it was done.

Yeah.

That you would sort of be picking up on noises on markers and so on.

Yeah. There’s, crosses and that have the tactile blister paving. I mean you must have seen the tactile blister paving that’s almost at all the crossings and that you can feel under your feet or with a cane. But, certain things like, there’s a crossing at end of my street, and what I do is I walk up till I feel the bend of the kerb, follow the bend of the kerb round with my cane and as I’m walking like the first lamp post I hit that’s the safest place for me to cross in the street and basically my ROVI, he’s basically sussed out that route. He’s like this is going to be the safest place for you to cross. You hit this marker, obviously wait til it’s clear and then cross the street. And different, tonnes of like the minutia of it, like there’s tonnes of different tips and tricks to make sure you’re level, like with the kerb and so you’re definitely going to hit the kerb on the other side, you’re not going to be, you’re not going veer off and be walking in the middle of the road for ten minutes.

What difference do you think the guide dog’s going to make to your life?

Massive. I mean aside from anything else I absolutely love dogs. I mean I’m glad that’s, that’s the animal they chose to guide people rather than anything else. I’m a massive, massive dog fan, but that’s not obviously the reason I’m getting a guide dog. I put off having a guide dog for a long, long time. I didn’t start applying till four or five months ago. And I was, I was hesitant because I wanted independence on my own, like I wanted to use the long cane and I wanted to be able to go out and it’s a massive responsibility having a dog. it’s another, it’s another life you’ve got to take care of and it’s got its own personality. It needs entertaining and caring and looking after and I wasn’t sure whether I was ready for that responsibility and, until, until five months ago and then I decided you know, I’m ready and this is something I want to be a part of my life.

And have you concerns about getting a guide dog?

I don’t know. I wouldn’t… it’s that thing of, it’s a massive responsibility. it’s huge. it’s another life, like I’ve got to care for, and it’s hard work and times will be hard. I know there are times, because you have to take that dog out, every day and you’ve got to work that dog. And there’s going to be times when it’s snowing and cold and I’ve got no other reason to go out and I’ve got to take that dog out. And I have to do it, but the reward of actually having a guide dog is, is just so worth it that it doesn’t really matter about things like that. I can do that and be happy, because I think it’s actually the privilege of having a guide dog would be fantastic.

And do you relate to the guide… because you have a dog already
Yeah, yeah.

A family pet and do you think you have to sort of learn to relate to the guide dog in a different way?

Yeah, he’s a working dog, first and foremost. I mean, he’s, and my discipline with him is essentially. I can’t, I’ve got to trust my safety to that dog. That dog’s got to walk me across streets. it’s got to walk me out the way of obstacles. it’s, it’s got to be my eyes when I’m out there and I’ve got to put my trust in him and he’s got to put my trust in me, he’s got to, got to put his trust in me and it’s yeah, it’s a big bond and I know it will be hard, I mean dogs, they, even though I can’t see him, I can tell when my dog’s looking up at me, and he wants to be a bit naughty. He wants to jump up on the sofa or he wants, he wants a biscuit and stuff and it’s tough to say no to him sometimes. But with a guide dog, I mean, he’s allowed like, they’re allowed freedom and happiness and like everything like that when they’re, when they’re off the harness. But there’s still got to be that sort of relationship where when that harness is on, he’s working and I’m working the dog, and yeah, it’s time to go to work. So it’s going to be tough, but definitely worth it.