Transcript of audio of Connect Magazine – Issue 12 – February 2017
SPEAKERS
PC: Padma Cheriyan
AS: Alec Sabin
NB: Nicky Barranger
EC: Emily Coleman
KN: Karen Newell
JN: Jason Noble
S: Stephen
MT: Maxine Turkington
LC: Leanne Coyle
I: Ibra
EE: Emma Elvin
EB: Emily Berry
KP: Karen Preece
JE: June Edwards
V: Voiceover
[piano music]
V: RNIB – supporting people with sight loss.
PC: Hello, and welcome to your audio version of the February edition of Connect, your community magazine. I’m Padma Cheriyan. I live in Milton Keynes. I have cone dystrophy with macular degeneration.
In this month’s edition, we are bringing you some essential healthy eating advice, tips for living well on a low budget, and you will be hearing more from me on a unique service that we call Milton Keynes Reader Service. Stay tuned to find out more. Here is Alec and Nicky with what else is coming up.
NB: Well, thanks, Padma, and what a lovely way to start the programme.
AS: Yes, and this is Connect magazine, which goes out to members of the RNIB Connect community across the UK, and brings together everyone affected by sight loss, and that means you, people close to you, and your supporters.
NB: And this, the audio version of Connect magazine is doing just that, through sharing voices, experiences, stories and tips from our community. Perhaps you have a story to share as well. Stay tuned for details of how to get involved.
AS: But first, coming up in this edition of Connect, we’ll be hearing from a blind children’s entertainer.
NB: We’re bringing you the latest advice on healthy eating for managing and preventing diabetes.
AS: You’ll be hearing more from Padma on a reading service for blind people in Milton Keynes.
NB: And a Connect community member is revealing her top tips for living well on a low budget.
AS: All that and lots more in this, the February edition of Connect magazine.
News.
NB: A pioneering drive by Edinburgh City Council to make its libraries more accessible to people with sight loss has won a prestigious award. The City Council’s Visually Impaired People’s Service, which is integrated throughout the city’s 28 public libraries, clinched the 2016 Gold Excellence Award for tackling inequalities and improving health, from the Convention of Scottish Local Authorities. The service was designed in consultation with RNIB Scotland, Edinburgh Macular Degeneration Society, and Guide Dogs for the Blind, to meet all of the six steps to improving access to UK library services.
AS: If you’re an ‘Eastenders’ fan, you’ll know that one of the main characters is losing her sight. Dot Branning, played by the actress June Brown, was diagnosed with wet age-related macular degeneration or AMD late last year. RNIB has been pivotal in the development of this storyline, working closely with BBC scriptwriters to ensure the condition is portrayed in a realistic way. Emily Coleman from RNIB explains.
EC: The eye health team has been such a huge help. They’ve been absolutely invaluable. They’ve checked whether the facts are right, even the tone is right, or the way that the GP or the ophthalmologist is delivering. So there was a scene, and Dot is looking at her hallway, and you can see that she’s got a black spot in the middle of where she’s looking, and then around that is distorted. So again, we sent that over to RNIB’s eye health team and they had a look at that and gave some feedback. So they’ve been a huge, huge help.
NB: Now, any parent will know how important play is to children, but if your child is blind or partially sighted, well you might have to put a bit more thought into playtimes. A new guide to help you is at hand. It’s called ‘Let’s play’ and is free to download from the RNIB website. Whether you’re a parent, teacher or carer of a child with a vision impairment, the guide will help you create safe and fun spaces to help them develop and explore their senses. One chapter of the guide is on representative toys. Karen Newell, who is mum to vision-impaired Fred and co-authored the guide, tells us more.
KN: If you don’t see yourself in toys, then it’s truly excluding you, because seeing a toy with glasses or a guide dog can really help you grow your positive self-esteem. So what we wanted to try and do was look through all of the toys available and see what was out there, and unfortunately there’s not a lot. We’ve put in what we can, so we’re promoting through ‘Toy like me’ for toy manufacturers to create more really groovy and interesting representative toys.
NB: You can download ‘Let’s play’ for free at rnib.org.uk/play.
AS: Now, what does your white cane mean to you?
NB: Well, from our conversations in the community, we know it means many things. For some, it’s a love-hate relationship and there are as many thoughts on canes as Connect community members who use them. But you’ve told us that ultimately, it provides independence. We also know that the white cane and particularly different types of canes still remain a bit of a mystery to the general public. So RNIB has made a film to help raise awareness, and you can check it out, along with blogs and lots more at rnib.org.uk/caneexplained. Also, tune into RNIB Connect Radio for stories and thoughts from your community on explaining the cane.
AS: Now, if you have age-related macular degeneration, glaucoma or cataracts, you’re likely to notice some changes in the way you receive treatment, and that’s because NICE – the National Institute for Health and Care Excellence – is planning on rewriting the guidelines. If you have any of these three conditions, RNIB is urging you to speak up about how your experiences can be improved.
NB: Whether it’s about the amount of time it takes to get an appointment, the information you’re given or any aspect of your treatment, it’s important that these decision-makers know what matters to you. Find out how to get your voice heard at rnib.org.uk/yoursayyourtreatment.
AS: For up-to-the-minute news, tune into the Early Edition on RNIB Connect Radio. Allan Russell and the team will guide you through the front, back and inside pages of the UK’s major newspapers, and that’s on weekdays at 7:00am till 10:00am.
Your Voice.
NB: Yes, it’s that time again. Your Voice is your chance to talk directly to other members of the Connect community. First, we’re hearing from a young man who has a very fun job indeed.
JN: Hello there. My name is Jason Noble and I am a registered blind magician and children’s entertainer, known through Surrey as ‘Jase the Ace’. I have been running my business for the past two and a half years, and it is based in a place called East Molesey, which is just across the river from Hampton Court in Surrey.
I spend nearly every weekend entertaining at birthday parties, weddings, christenings, for children aged between two and eight years old. Each show that I do is custom-designed with different magic tricks to suit the age range of the children, and it really is a fantastic way to earn a living. My wonderful wife, Hannah, helps me at these parties, as obviously, with my eyesight I struggle somewhat with getting to venues, and some of the organisation.
I got into magic when I was five years old, and before becoming a primary school teacher, which is what I do full-time, I actually worked in Hamley’s on Regent Street, the world’s biggest toy shop, as a magician.
I feel one of the reasons that we’re so popular around Surrey is actually the fact that I have a disability – not that that is always apparent to people that book me, but I feel that it’s given me the ability to empathise with children, and especially if there are children at the parties with certain extra needs, I can cope with that, I think, far better than someone who hasn’t had to live with that their entire lives.
To most people, it would probably seem strange that there’s a registered blind man performing magic and entertaining 30+ children of a weekend, but for me it’s something that comes naturally. I was born, I feel, to entertain people, and obviously I’ve grown up with my visual impairment, so I know exactly what I can and cannot do.
The best thing about being a children’s entertainer is the looks on the faces of the children when they’re sat watching what I’m doing. I really do have the best seat in the house, and it’s one of the things that keeps me going back to entertaining children, week in, week out.
AS: And if you’d like to get in touch with Jason, you can catch him on Facebook. Just search for ‘Jase the Ace’ or email . And by the way, that’s ‘Jase’ with an ‘s’.
Next, we’re going to hear just a snippet of one man’s story, and it starts when he got his dream job of becoming a butler.
S: Hello, my name’s Stephen. I’m from a tiny island just off the north Wales coast, and I’m as blind as a bat. I was a butler for many years with European royalty, who turned out to be Prince William’s godfather. It was an amazing life. It was just sort of like basically meeting different members of European royalty. Every day was different. I used to get to hear things that I couldn’t divulge now, and everything was just amazing about it. There was a lot of sort of like media exposure at the time, because I actually had a grant from the Prince’s Trust, and at the time there was talk of me becoming Prince Charles’s next valet, but unfortunately that didn’t come to fruition, but then it’s sort of like, six weeks of being followed around every single day by a TV crew and going on live TV, being in different magazines that were circulated around the world and just loads and loads of press, I’d actually gained employment with a Saudi Arabian prince. I was actually attacked when I was out one afternoon, and quite severely beaten up – I was in hospital for three months, and one of my eyes was badly damaged and it was really not a very nice time in my life, to actually have an amazing job, an amazing career in front of me and then just to have that all taken away within minutes. My employers kept the position open for me, but because of my eyesight, they had to unfortunately let me go.
My life was a bit horrible to begin with. I had to move back to my parents in Wales from London. Basically, I made a choice that being blind was not going to define who I am, and I wouldn’t let it change me as a person, because I’ve still got one hell of a sense of humour and I even laugh at myself, and that’s one thing that I think that’s kept me going is my sense of humour through all this – that I can actually make other people smile. Don’t ever give up on yourself.
NB: Thanks to both Jason and Stephen for taking part in Your Voice this month. If you or anyone you know would benefit from advice or support at any stage of your sight loss journey, from emotional support to help with employment, the helpline is on hand to assist. This month’s contributors will each receive a talking calendar clock – that’s a Communiclock from the RNIB Shop. And if you’d like to take part in Your Voice, do get in touch. Listen out for our contact details at the end of the programme.
AS: Living well on a low budget.
It’s a sad fact that every day, life can be pretty expensive, with food to buy, bills to pay and places to be – it can all add up. One in five people whom we spoke to as part of our My Voice report said they have some or great difficulty in making ends meet. There are lots of ways we can save money – sometimes a little extra thought can make a big difference in your pocket. Connect team member Leanne Coyle spoke to Maxine Turkington, who’s been blind for 30 years. She kindly agreed to share some tips for living well on a low budget.
MT: My policy is – never pay full price for anything unless you can help it. And this applies not only to personal effects, so to speak, but also to giving gifts. As far as food is concerned, it’s a mistake, I think, when people have things delivered, so they have no control of the quality, of getting the right food, or for looking for special deals. So the way I get over that is to go to the same supermarket all the time, and make friends with the people – they see me coming, they know I need help, and they point out what’s on offer.
LC: A lot of blind and partially sighted people do have their food shopping delivered to their door because it’s easier, but are you saying that actually you could end up saving money?
MT: But it’s also more expensive. You’re much better off and save a lot of money if you go, get help, and either go with somebody sighted or as I do, go to the same store so they know me, they greet me, they walk around with me, and tell me which are the best offers for things.
LC: So that covers that aspect of things. Well, blind and partially sighted people can receive a certain amount of benefits. What would be your advice around that?
MT: The advice is – as soon as you’re diagnosed, call RNIB to find out what your benefits will be, and so you’ll find out that there are some that you’ve never even known about, and you can save an awful lot of money. But also, what I do is get rid of the – with phone companies, with electric companies, and they have a special department which deals with disability of any kind, and they’ll give you the best rates – sometimes there’s a discount – and you’ll get better service if you have a problem with your phone or anything else.
LC: What you’re talking about right now is very helpful – it’s called the Priority Services Register, for anyone who wants to enquire about that, and it’s with any gas or electric company. You just phone them up and enquire. What about mobility, for example? Getting around can be expensive. Do you have any tips.
MT: Yes, some people use taxis, which I try not to, but occasionally am forced to. You can actually get – I think it’s a taxi card, which gives you a discount, but you can only get that if you’re receiving two benefits. Also, sometimes on your council tax, if you have a room that’s devoted to equipment pertaining to your disability, you will get a break on your council tax. But also, I’m a great believer in living life up to the utmost – going to the theatre and cinema. A friend would be very happy to give you a lift and go with you to see a play or a film, and not only will they get two-for-one, because basically you pay and then the person who accompanies you is free, because you can’t go on your own. So what we do is split the price, so we each go for half price, and if they drive there, they have use of your blue badge, as long as you’re with them, so they can park free and on double yellow lines.