RNIB - Supporting People with Sight Loss

RNIB - Supporting People with Sight Loss

July 2016 Connect Magazine

Speakers:

AS :Alec Sabin

NB :Nicky Barringer

V :Voice over

Other speakers identified by initial.

Intro

V:RNIB, supporting people with sight loss.

M:Hello, and welcome to the September audio edition of Connect, your community magazine. I’m Matab Khan, I live in Birmingham and I’m blind. Over the next half hour, you’ll hear lots of voices from your community on issues that matter to you and you’ll also be hearing from me again as I’ll be giving the jobseekers among you some crucial advice. So let’s get on with the show, and it’s over to Alec and Nicky.

NB:Thank you, Matab. Very much looking forward to hearing from you later in 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 too. Well, stay tuned for details of how to get involved.

AS:I’m Alec Sagan.

NB:And I’m Nicky Barringer.

AS:Coming up, what is the biggest issue affecting you as a blind or partially sighted person? Well, that’s the question we’ve been asking some of you and you’ll be able to be a part of this conversation in various ways. So stay tuned to find out how.

NB:Now, we’re all interested in finding out about where we came from and in this month’s edition, we’re talking to a partially sighted historian to learn where to start with tracing your family tree.

AS:Matab, who we heard from at the top of the programme is an employment advisor for disabled people and has some very useful advice if you are job hunting.

NB:In this month’s Your Voice, we’ll hear from Ray from Essex who despite having a tough time in the past, has now found balance in his life.

AS:That’s along with the usual mix of news and stories that you won’t find anywhere else, so stay tuned.

NB:All that and more coming up in the September edition of Connect magazine.

News

AS:A new, accessible £5 note is being released this month with £10 and £20 notes due out next year. RNIB has been working alongside the Bank of England to develop the features that will help blind and partially sighted people identify their money more easily. The new notes will be made of polymer and will retain tiered sizing, include bold numerals and have a similar colour palette to the current paper notes. The new £10 and £20 notes will also have a tactile feature with a series of raised dots. Steve Tyler is Head of Solutions, Strategy and Planning at RNIB.

ST:These notes are identifiable very easily, partly because they are slightly smaller than the existing notes that we’re all used to. They feel very different; they’ve got this plastic material so there is a shininess to them which doesn’t exist on our current notes.

NB:A former Chair of RNIB Scotland completed a 750 mile cycle from Edinburgh to London via Belfast, Dublin and Cardiff, all in aid of RNIB Talking Books. Ken Reid, who has retinitis pigmentosa, worked together with the relay of volunteer pilots to get him across the UK on his tandem bike. Ken spoke to us shortly after he finished the challenge,.

KR:The Cycle 750 was an absolutely great experience. I visited so many parts of the British Isles and I met lots of really amazing people. My relay of pilots were such a great support all the way around and of course, putting trust in people like my pilots is really quite a great analogy for life with sight loss. So I’m hoping that my trip has helped to raise money to put more books into the RNIB library.

NB:And you can still sponsor Ken online by visiting JustGiving.com/cycle750 or to donate £5 by text message, text CCLE75[space]£5 to 70070.

AS:A group of RNIB staff and supporters will embark on a trek of a lifetime across Iceland next month. The team are funding to help RNIB continue to provide crucial emotional and practical support to blind and partially sighted people. The five day trip will include 18 hours of trekking across the beautiful Icelandic landscape. Team RNIB will stay in traditional mountain buts with temperatures close to minus ten degrees at night.

NB:One supporter taking on this challenge is Elizabeth Capener who is 35 and is partially sighted with retinitis pigmentosa. She regularly fundraises for RNIB and aims to raise £2500 from this trek.

EC:I like my creature comforts so... But also just with my vision, I do bump into things a lot so it is quite daunting but really exciting at the same time.

NB:And if you’d like to help her reach her fundraising target, you can donate online at JustGiving.com/lizzie-capener.

AS:A campaign is underway to stop the funding for attendance allowance being moved from the Department of Work and Pensions to local authorities. The benefit helps people aged 65 or over to meet the extra costs of a disability. RNIB believes the move would affect the amount of funds going to social care. Anyone currently receiving attendance allowance would be protected but in the future, it could be much more difficult to receive. The government is expected to consult on these plans later this year and will bring you news on that as and when we receive it.

NB:Do you receive attendance allowance or know someone who does? To help RNIB respond to the government’s proposed changes, call 0121 665 4255 to share your story.

Your voice

NB:You are listing to the September edition of RNIB’s Connect magazine. Now it’s time for your voice.

AS:We’re going to hear first of all from Ray, from Essex. He’s led a tough life but now in his 80s, has made peace with his past and lives for the future. He tells us how rambling helped him to do that.

RJ:My Ray Johnson who lives in Essex. I’m quite elderly now and in the main, I have done quite well for myself, not as well as some people but I actually lost my sight in 1970 through detached retinas and now I am totally blind. Before, I was partially sighted. I was lucky and I joined a rambling club which I did most weeks and I went on holiday with them and they were very helpful and without their help, I couldn’t have done it. I started rambling in 1976. It’s quiet and you hear the birds and it’s a challenge to you to do what ordinary people, the sighted community do. That was very good and without the support of fellow ramblers, I couldn’t have done it. It was an ordinary rambling club. It wasn’t especially for blind or partly sighted people. Somebody guided me and I also took my guide dog. I found a lot of social brevity and I found it helped me a great amount to mix with ordinary people again. You know, not people connected with blind clubs. I still do as much as I can but I don’t do rambling now because I can’t walk well enough, but otherwise, I do what I can and I think it’s best to always get out and meet people and keep socially friendly with people because it gives you a great advantage.

NB:Thanks to Ray for telling us about his experiences of rambling.

AS:Our next Your Voice comes from Maxine Turkington, who lives in Cambridge.

NB:Now, some of you might recognise Maxine’s name from her lovely recipes that you may well have tried out yourself.

MT:I was fully sighted until I was in my 40s. I noticed a change in this. I was living in America at the time and they discovered that I have Stargardt and indeed, I gradually lost my central vision so I have had no central vision for many years. My motto which is ‘when your life changes, change your life.’ Forget about what you can’t do and do what you can do and you will be surprised to find out that you can do almost anything. Now, as the years went by, I really missed living in England and we made the big decision rather quickly and moved in December 2002. Well, my dilemma was that as a high energy person and somebody who likes to keep their brain active, what was I going to do now? I thought ‘What is not available at this point for visually impaired people? Do they have a cookbook that they can use?’ And so I researched this and there was no cookbooks so of course, what I did was put together a lot of recipes that I have collected over the years and weeded out 100 of them that I thought I could adapt so that visually impaired people could use the recipes and would be able to cook them on their own or with a little help. And I changed some of the ingredients so they were very healthy, some of the methods and so on. I got a grant to publish it in large print. A lot of people wanted either CDs or DAISY versions and eventually, RNIB took over the book and it’s now available in their shops.

AS:Maxine’s recipe book, Cooking for VIPs, is available to buy or to borrow. For more information, call the helpline on 0202 123 9999.

NB:And thanks to both Ray and Maxine for taking part in Your Voice this month. They will each receive a Penfriend 2 Labeller for their contributions.

AS:And if you’d like to take part in Your Voice, do get in touch. Our contact details are in the information directory at the end of the programme.

The big connection, join in the buzz in your community this month

What are the big issues affecting you as a blind or partially sighted person, and how can our community contribute to addressing these? Well, our collective voices are vital in driving change and you can play a part in shaping how things develop.

AS:And to kick things off, we’re hosting an event in September called The Big Connection.

NB:It’s in Birmingham on 29th and 30th, and you might have heard this event being referred to as RNIB’s AGM.

AS:We’re talking about how to reach more people, engage a younger audience and help people be more active in things that interest and inspire them like campaigns, and building great relationships with other organisations.

NB:So to get started, we asked some of you to talk about the biggest issues affecting you as blind or partially sighted people.

EC:I’m Elizabeth Capener and I am from London. I have retinitis pigmentosa. It’s mainly affecting me with my peripheral vision at the moment. I have reasonably good central vision and night blindness. The main thing I think that affects me at the moment in my everyday life is other people’s perceptions of me as a visually impaired person. Retinitis pigmentosa is a condition that you can’t see. I mean, there’s been times where I have sort of had comments from people because I have maybe knocked into something or especially when I’m in busy stations and things. People aren’t very forgiving. Even if I’m using my white cane, people don’t necessarily know what that means or don’t necessarily understand that actually, people can use a long cane but still have some vision.

I think what needs to be done is that people need to be educated on what the long cane means in order to understand that people can have conditions that you can’t see. I go into schools and do workshops and one of the schools that I work at, I did a whole day of vision loss awareness, and it did change their perceptions of sort of disabilities and partially vision loss, educating children right from an early age and making sure that they understand.

KS:Hello. My name is Kevin [p.g. Sertizibell 0:13:22]. I’m 25 years old. I live in Northampton and I am registered blind. So the biggest issue affecting me as a blind person is a lack of accessible travel solutions. So assistance, I can get it stations but it’s patchy in National Rail at best, and probably the best in the underground but it really affects me on the streets. Outside of London, buses don’t talk in Northamptonshire and you’re still sort of having to rely on drivers telling you when to get off, but a lot of times they do forget. If you’re using an app, that’s not always reliable because your battery could run out on your phone or you could lose signal and then that could mean that you could be stranded. Also, there is a lot of planning involved if you’re going to travel and although I mentioned a couple of these apps like BlindSquare, which tell you where to go, there is no real integrated solution, so a lot of times I’m having to use Google Maps. I’m having to use BlindSquare and I’m having to use the TfL planner to sort of get from A to B and get all of the information that I need. There are solutions in the pipeline and I know there’s talk of apps that can help you find your bus stop, being developed in the USA and that would be great if there could be an app that could be like, you know, your accessible travel app or something, that could bring all of these technologies together and make travelling much easier for blind people.

SD:My name is Sabina [p.g. Desirim 0:14:55]. I am 30 years old. I was born in Sri Lanka, currently living in the UK. I lost my sight a few years ago. I was fully sighted until 2013. I lost, I think half of my useful sight in 2015 and was registered as partially sighted and then I lost all of my useful sight I had in 2016. Now I’m registered as severely sight impaired or blind. The issue I’m still struggling with is the emotional impact I have. I still can’t let go of things. I still miss seeing things. I still love going on holidays but I remember four years ago, I used to enjoy everything around me and now it’s just I don’t see anything. I just see shadows of everything and I really miss it. I really miss being that person because I’m still struggling to accept the fact that I am severely sight impaired and I have to let go of things and start a new life, maybe. I hope to come out of it really soon but I think if I live until 90, I will still miss that. I will still miss it because I’ve been seeing things for 27 years. I still am dealing with it. I’m still struggling to deal with it, but the sight loss counselling was a huge support. That actually did boost my level of confidence to live with sight loss.

AS:If you want to speak up about issues that matter to you, like Kevin, Elizabeth and Sabina, now is your chance. You can join in the conversation before, during and after the Big Connection, including online, over the phone and with radio. Your voice is vital in raising the volume of this conversation, so do join in.

NB:So how can you get involved and share our big issues?

AS:Tune in and call in with RNIB Connect Radio. Listen in for features on big issues and get in touch to take part. Listen on Freeview channel 730 and online at RNIBConnectRadio (and that’s all one word) .co.uk.

NB:Join telephone groups to enquire about joining a group; email or call us on either 0845 330 3723 or 0207 391 2218.

AS:Join online discussions and check out blogs from community members on big issues that matter to us. Visit RNIB.org.uk/bigconnection.

NB:Follow RNIB on Facebook at Twitter and use the #RNIBConnect to get involved in the conversation. We look forward to sharing the big connection with you.

Accessing your ancestors

Nicky, have you ever wondered who your great greatgreat grandmother was?

NB:Well, I have and I have no idea who she was although I’d like to think that I might have descended from royalty. Why do you ask, Alec?

AS:Well, you never know and you might be one step closer to finding out. Partially sighted historian and communications panel member, Brother David, has some tips up his sleeve and a very interesting story of his own.

BD:Well, I’ve always been interested in history, I think, from the town I came from originally being Kidwelly. It’s a Norman town and they have a Norman castle and I think that sparked my interest in history. 15 years, it took to research a family tree and let’s just say it’s complete. I can’t go any further back than what I have done and I think it was an adventure.

LC:What we’re looking at right now is your family tree and it’s in a scroll which I can see is really tightly wound up. There’s lots there. If you unrolled this, how long would it be?

BD:Well, I wanted to fit it on my study wall but decided it was probably not the best idea. It would have gone from the light fitting and around under my feet.

LC:Okay, gives us a sense of how far back you actually went. There is someone who was born in 1726 and died in 1728, so she was only two years old.

BD:Yeah, this period, don’t forget, is a period of high infant mortality. Cholera would have been around.

LC:It went right back. We’re at, wow, 500...?

BD:The year 500 is the birth year and the person passed away on the 1st March 589, so it’s a holy man. In Wales, we know them as Dewi; in England, it would be David. So a holy man called David that died on 1st March would be St David of Wales.