Bringing together everyone Connect affected by sight loss rnib.org.uk/connect-magazine

Meet the trailblazers The adventurer, campaigner, MP and others share their incredible stories

Issue 19 / Spring 2018 Help us celebrate our 150th Since RNIB’s launch in 1868, we’ve seen huge changes in the world for blind and partially sighted people. We’re proud to have played a part in helping to bring about changes to law, delivering unrivalled services and building a community for everyone with sight loss. To celebrate our anniversary we want to hear about the changes, developments and milestones that matter to you.

In 150 words, please tell us about one of the following: • a life-changing moment • a change you want for people with sight loss in the future • an experience you’ve had with us or one of our services • a development in the last 150 years that has made the biggest change to your life • the technology or product that you can’t live without.

Write, record or film yourself talking about your story and send it to us by email [email protected], by post to Connect magazine, RNIB, 105 Judd Street, London WC1H 9NE or call 0303 1234 555. Later in the year we’ll be sharing some of your experiences to help us celebrate 150 years of RNIB and you, our community. Check out rnib.org.uk/150stories for more information.

Welcome Contents 2 Help us celebrate our 150th 3 Welcome 4 The Traveller 8 The Composer 11 The MP 14 The Tech Guru 18 The Charity Worker This edition is dedicated to all the 20 The Campaigner blind and partially sighted people 23 Campaign Update who are doing inspiring work across the UK. We can only focus on a few 27 Book Lovers' Corner inside this edition. 30 News Inside this special edition, you can read about Scott Watkin, who has 32 Your Quarterly Connect been awarded a British Empire 34 Food Fanatics Medal for his work in the disability sector on page 18, and Tony Giles, 36 Information Directory the blind solo traveller who has visited 125 countries on page 4. Campaigner Irenie Ekkeshis, talks about her continuous push for better health information for From the cover: Meet the contact lens wearers on page 20 trailblazers: the adventurer, and, Marsha de Cordova explains campaigner, MP and others what it’s like be a blind MP in share their incredible stories Parliament on page 11. © RNIB April 2018 Hannah Adams, Registered charity numbers Connect magazine Editor 226227 and SC039316

3 The Traveller

In this edition, we showcase some of the most amazing tales from the sight loss community. These inspirational stories highlight a passion for work, adventure, music, campaigning and, most of all, achievement. The intrepid traveller

Picture: Tony at the Western Wall in Jerusalem, with the Al-Aqsa Mosque in the background. The Traveller

Tony Giles has been globetrotting That’s not to say people react to for more than 20 years and a blind man in the same way in has been to some of the most different countries. inaccessible places on earth. “Some people come over to you As a man who is totally blind and ask you questions while others and partially deaf, his solo just assist you without speaking. adventures have captivated In England, find people are quite the world’s media. worried about offending you whereas if you go to the States, “I started travelling in 1999 Australia and New Zealand, when I spent five months people talk more. I find that kind in Australia, New Zealand, of refreshing. Vietnam and Thailand. “On the whole, the generosity I had been studying about I’ve had and the kindness I’ve Australasia and the United been shown around the world States as a kid so I knew has been fantastic. It’s staggering,” about the countries.” Tony explained. “People see you wandering around Tony went to Exhall Grange in with a white stick on your own, and Coventry, a boarding school where they want to help; they sort of want he was taught to be confident to protect you. about getting around. “At other times it can be “I was told I would cross roads problematic. Some people panic and go to the shops and catch when they see a blind person, and buses. So travelling was sort of don’t really know what to do. They just natural really. I was confident want to help but they’re not sure it’s what I enjoyed doing.” if they should touch you, or if they might offend you by speaking. People’s reactions The BBC's Travel Show has featured “I have found the countries that Tony’s story and even sent a film have had a greater exposure to crew to follow him on a trip to disabled and blind people have Palestine where he appears to blend a much more interactive reaction, in naturally, chatting to people and more confident maybe to some. getting around with ease.

5 The Traveller

But Tony likes a challenge, and as he says, the rougher, the better. “Going to Vietnam and Thailand was completely out of my comfort zone – the foreign languages, the smells and sounds, and the humidity. “I had to avoid open ditches and Tony at the Hacha Waterfall, drains, broken pavements and Venezuela bridges. Trying to avoid thousands of bicycles all moving at once in The difficulties of travel Vietnam was all kinds of chaos. I had as a blind person to cross the streets by moving with One of the main issues we can all the bicycles. It sounds a bit suicidal face when in another country is really,” Tony said laughing. accessing the local currency. But if you're blind and deaf, it can be quite Tony's favourite experience a bit harder than for most. After flying into the National Park in Venezuela and spending a day “ATM machines have swallowed my canoeing up a river, Tony hiked bank card in the past,” Tony said. “It up to the highest waterfall in the was a bit problematic the first time world, Angel Falls. I was in the middle of Africa with no money and no credit card.” “When I got to the top, I sat on a rock listening to the sound of In order to use a foreign cash the waterfall. It felt like a huge machine, Tony relies on finding achievement,” Tony explained. someone who he feels he can trust to help him work out how they work. The hike had involved walking through soft sandy ground, over If getting hold of cash wasn’t rocks and tree roots and climbing daunting enough, logistical steps over a foot high. dilemmas have also been a factor for Tony. “It was very challenging and it took most people about an hour and a “The first time I was travelling in half to get to the waterfall. It took Africa, every time I took a minibus me three hours,” Tony laughed. my backpack would go in a different part of the bus and I didn’t know if I would ever see it again."

6 The Traveller

hearing exotic music. It’s about the culture, and walking over cobbles and up and down mountains and using your feet,” Tony explained. “Blind people are probably much more aware of the 3D image of a place rather than a sighted Tony standing at the base of the person who wouldn’t notice any Myrdalsjokull glacier, Iceland. of that. I think that’s a much more enriching experience than just seeing something.” People say to me: “You can’t experience it unless you can “People are a country’s real culture see it.” and you don’t need to see someone Over the years, many people have to meet and talk to them.” questioned Tony about why he travels when he has such limited Feeling inspired to push yourself vision and hearing. But for Tony, out of your comfort zone, but don’t seeing and hearing are only a small fancy travelling solo like Tony? part of the fulfilment he gains from Try one of RNIB’s challenge visiting new countries. events: skydiving, treks, “To experience a country properly, marathons and group walks. you need to use all your senses. It’s Visit rnib.org.uk/events about tasting different food and to find an event for you.

How to be a globetrotter “Start by going to a new place What are the secrets to enjoying in the UK for a weekend either epic adventurers around the by yourself or with a visually world? Well, Tony claims it impaired friend to see how you comes down to two things: get on. Then, when you feel more good planning and confidence. confident and comfortable, take gradual steps and broadened “Make sure you do plenty of your horizons. planning. I use my laptop with JAWS to research the places “Finally, just give it a go! Anyone I want go to, the hotels I’ll stay in can do what I’ve done. You just and how I can travel from A to B. need the confidence to try.”

7 The Composer

“Music just happens to be one of the ways in which I react to the arts” Alexia Sloane started composing music when she was 12-years- old. Now, five years later, she is one of the country’s most talented young composers. She is the first female to win the Cambridge Young Composer of the Year and is the only blind member of the National Youth Orchestra. Here, she explains her story. “I was born fully sighted, but I’ve been totally blind since the age of two when I was diagnosed with optic nerve glioma.” As well as her eye condition (a type of brain tumor) Alexia has synaesthesia which is a neurological phenomenon that means she experiences senses in an unusual way. When she hears a sound, she sees a colour, and increasingly, she also feels a texture too. From an early age, Alexia was aware of music. She said: “My dad listens to a lot of music and so

8 The Composer

from day one I’ve been raised on Alexia said: “In the National sound of all different types.” Youth Orchestra of Great Britain, we have our pieces performed When she was four, Alexia started in unconventional places. Last singing in her school choir and summer we had our pieces played from the age of nine, she sang in in the Tate Modern which was the Girls’ Choir of Great St Mary’s strange but so exciting. Church, University Cambridge. “I wrote a choral piece which the choir performed. Coincidentally on “I had a piece performed with the same day that was performed, quite a substantial cello solo. my first instrumental composition The cellist who played the was commended in the Cambridge part was just extraordinary. Young Composer of the Year.” I was enthralled by her and at It wasn’t until Alexia was 12 years the end of the performance old, and in a workshop writing a she came over and said how song in a foreign language, that much she’d enjoyed playing the idea of being a composer first my piece. We’ve been came up. corresponding ever since.” “The person advising us remarked: ‘I think you have the makings of a Inspiration composer, do you have lessons?’” On her website, Alexia attributes the inspiration for her music to Proudest moment a wide range of philosophical, Buddhist, environmental and Last year, Alexia was one of synaesthetic themes. seven young composers to be commissioned by Classic FM to She said: “Personally, I’m very write a piece of music to celebrate inspired by concepts, so I might the radio station’s 25th birthday, read a poem or see something which was played by the Royal in current affairs and then music Liverpool Philharmonic Orchestra. comes out. My synaesthesia is not Alexia wrote her piece for flute, the most important factor usually. harp, clarinet and percussion. It’s more like a kind of helpful tool to get from concept to music.” However, hearing her music being played by talented Alexia writes the pitches down in musicians is what Alexia finds braille music notation and then particularly enjoyable. dictates them to an amanuensis, 9 The Composer

or artistic assistant, who transcribes As well as pursuing music and them onto a notation software. poetry, Alexia would like to be a therapist or an environmental “I’m not a very good public correspondent for the BBC. speaker, and music just happens to be one of the “In a completely ways in which I react to I would spend my career as a composer and poet and do very the arts.” little else. However, in the reality, commissions don’t come every The future day and no one’s probably ever Even though Alexia has an going to pay me to write poetry, so exceptional talent for writing I will need to have something else music, she doesn't always believe as well. But music and poetry will in her ability. “I have a chronic lack still be my main focuses. of confidence and I don’t actually believe I am a composer at all, so I just take other people’s word for Listen to Alexia’s music on it that I am,” Alexia said. her website inspirarts.com. Find out about the music services Her ambition is to study Music RNIB offers at rnib.org.uk/music. at Cambridge University, and complete a postgraduate degree in Composition.

10 The MP

“We’ve got a long way to go in terms of representation of disabled members in Parliament” Marsha de Cordova is the Labour Shadow Minister for Disabled People and is registered blind. Between meetings with constituents and colleagues, Marsha spoke to Connect about why she wants more blind people working in politics. No two days are the same for any MP, but not least for Marsha de Cordova, who is the representative for Battersea in south London. “Depending on what the business of that day is, my day can be pretty varied. I could be attending meetings and events, and also being in the Chamber,” Marsha explained.

“I go through the Order Paper (a daily list of the business of the House of Commons) with my staff and then look at what questions I want to submit to different departments, or if there is an urgent question (UQ) I want to put in.” Earlier this year, the government decided to review the current caseload of 1.6 million claimants currently in receipt of Personal

11 The MP

Independence Payment (PIP). For “I feel lucky that I have the more on PIP, please see page 26. opportunity to serve the people of Battersea, and also be a voice for Marsha asked an UQ following disabled people in Parliament. the announcement of the review seeking clarity as to what this would mean. She sought to understand “We’ve got a long way to go how many people would see an in terms of representation increase, and a guarantee that no of disabled members of one would see their benefit reduced Parliament. There are not as a result of the review. many of us and there needs “On that particular day, I had to get to be more. That goes for myself prepared for my question, needing more black, get my speech written, and ensure Asian and ethnic minority that I was prepared for the question MPs as well.” when it came up in the Chamber. “You don’t always get granted Navigating Westminster urgent questions as it has to be a The Palace of Westminster was really pressing issue,” Marsha said. built in the middle of the 19th “The previous evening I had been century and as such is not an on the News at Ten talking about accessible building. PIP and also on Newsnight. It was “One of my bugbears about my quite exciting.” office being in the Palace is the lighting is fairly poor in this part of Job satisfaction the estate. But it is a great, historic Before becoming a Labour MP, building, and it’s a pleasure and an Marsha was the Engagement and honour to call this my place of work.” Advocacy Director at Thomas Pocklington Trust and also worked “Hopefully as part of the for . restoration process of the Palace, they will look at all issues “Throughout my career I’ve of accessibility as part of the always tried to be an advocate for whole process.” people who do not have a voice, particularly as a strong disability Adaptions for work rights campaigner. I continue All of Marsha’s papers have to to do that as an MP as well,” be produced in large print so she Marsha said. can read them. When it comes to 12 The MP

external bodies launching reports, Marsha has experienced delays to getting her documents in large print, including the budget paper. In an interview with newspaper, Marsha explained she needed to give a parliamentary response to the government’s proposals for its new work and health programme. But Marsha’s Marsha asking her first question large print version didn’t reach her in Parliament. office until late evening, long after the issue had been debated. parties. I had to educate people when I first got politically engaged “In all my jobs, I have had all those years ago. This will help reasonable adjustments and ensure that disabled people adaptations made. For example in coming behind us then don’t have my current role, I have a sighted to face the same barriers. assistant who is pretty much my eyes. They help me get around, navigating the building, and at “As a disabled woman, I feel external meetings and events. a weight of responsibility “I’m pleased to say now they because I’m here are sending me things on time, representing many millions of which is good.” disabled people. I just want make sure that I serve and Entering politics do my very best to represent “I want to encourage every visually their voices.” impaired person to get involved in politics. Whether it’s getting involved locally, or becoming an Contact Marsha about national MP or local counsellor, they should issues relating to benefits and definitely do it,” Marsha said. employment by emailing marsha. [email protected], “Sometimes you may have to be calling 020 7219 0209 or writing the first person to do something to Marsha de Cordova MP, House to actually break down barriers of Commons, Westminster, and open up access to political London SW1A 0AA.

13 The Tech Guru

Tech enabling positive change “We are on the “I feel really optimistic about so many different technologies,” cusp of the Robin said. biggest change “I think Artificial Intelligence (AI) hasn’t really taken off yet for mainstream consumers. AI is used in terms of how to enable smart speakers in the homes, like the Amazon Echo and technology Google Home. will transform “These devices connect you to the internet and allow you to do things people’s lives” like order your weekly shop, contact friends and family around the world Robin Spinks has spent his and check train information, just by career dedicated to technology using your voice,” Robin said. and getting the word out on how “But we’re really only at the start of it can make life easier. Robin has the whole explosion of AI having a limited sight due to albinism and role in our lives.” so is well placed to influence companies like Samsung and Self-driving cars Apple to understand what blind people need. “I think transport is going to be an absolutely feast of opportunity in the next few years."

14 The Tech Guru

Mobility and getting from A to B when you first travel alone and off the public transport grid is a recognise that a computer is safely huge challenge for anybody with and very capably taking you around sight loss. a town centre. That’s why another area of technology which Robin believes “This would have been the will impact on people’s lives stuff of sci-fi just a few years is connected autonomous ago, but it’s becoming real,” vehicles, sometimes referred to Robin said. “Now, there are as self‑driving cars. places in the world where “Connected autonomous vehicle is there are large numbers of the catch-all term for things which autonomous vehicles on the move around which are powered road, albeit in a test capacity. by computers. That could be not But with many self-driving only independent autonomous cars but things like helicopters features like auto park, too,” Robin said. lane control and collision avoidance, we are edging “I was lucky enough a few months closer to a world where we’ve ago to get a trip around Mountain got fully autonomous cars View in California in a self-driving car. It is quite a profound experience on the road.” Grendelkhan/wikicommons

15 The Tech Guru

Equality through technology “That’s not to say that there Prior to working as RNIB’s Senior won’t be a role for guide Innovation and Technology dogs, because we know Relationships Manager, Robin that there always will be. spent a number of years in Africa People and animals have a and South Asia influencing very special bond, but I think governments and developing low cost assistive aids. people have asked a question ‘Will guide dogs be necessary “Artificial Intelligence and connected in the future?’ autonomous vehicles will probably be two of the biggest things that we “What will matter to people is that will look back on 15 or 20 years from they have the right solution for now as pivotal turning points. them, as an individual. So I think “I think for blind and partially the opportunity to bring about sighted people, something greater equality has never been which enables us to overcome greater,” Robin said. our mobility challenge is absolutely enormous. Technology at home From smartphones and tablets to “Thinking beyond self-driving smartwatches and trackers, Robin cars, with some of the navigation is always eager to try out the technology that’s coming along latest technology. including robotic devices, people may not have to use a guide dog to “I’m often found enthusing and be assisted. sharing ideas about technology.

16 The Tech Guru

I’ve spent a lot of time with people’s needs have not been wearable tech like smartwatches. accommodated,” Robin explained. Of course PCs still have a role, but “We need to accelerate that only occasionally. agenda so development always “Technology is everywhere that takes account of people’s needs I can put it in my home and and products, services and sometimes it’s in places that technologies are developed you can’t even put it. And I’m inclusively. We should not be constantly looking for new ways retrofitting new technology with to use it to just make life more fun, accessibility in mind. We need to engaging and enjoyable.” get beyond that as a big priority.” “If you came to my house we’ve set Robin’s three tech tips everything up with smart plugs,” Robin explained. “Smart plugs are 1. Experiment with dictation and plugs that have a wi-fi receiver that voice control options on your you plug your 13 amp plug into. smartphone. You don’t always I’m using them with things like have to type. smart light bulbs. 2. Try one new piece of tech every time you get the chance. Variety “Being able to turn the lights helps you pin down the best on and off remotely and using a experiences. coloured light that works for us in the house is fantastic. Just imagine 3. Remember, if something feels instead of having white light bulbs, awkward or difficult, there is you can have one of 16 million probably a better option being colours,” Robin said. developed just around the corner like a better app or online Accessibility is key service, so don’t be put off. Although he loves trying out new technologies and embracing the fun As well as advising tech that’s to be had with devices and companies on accessibly, functionality, Robin remains resolute RNIB provides a training and on not taking his eye off maintaining transcription services to the accessibility agenda. businesses to help them meet the “We can’t relax just yet. There are needs of their blind and partially lots of technologies being invented sighted customers. Find out more where blind and partially sighted at rnib.org.uk/rnib-business.

17 The Charity Worker

Charity worker recognised in 2018 New Year Honours In the New Year’s Honours List, “Back in November, I received a Scott Watkin was awarded a letter through the post. I didn’t British Empire Medal (BEM) have a clue what this letter was for his tireless work teaching about and to my surprise I had got people with learning disabilities a British Empire Medal for services about eye care. to people with learning disabilities. I started crying when I told my Scott works for the charity, wife,” Scott explained. SeeAbility as an Eye Care and Vision Development Officer. He As part of his role, Scott talks to has a learning disability and an people about his eye condition eye condition called keratoconus and helps other people with which affects the cornea. learning disabilities to make sure

18 The Charity Worker

they get the eye care and vision “I was told I’d never get a job, I’d services they need. always live in a care home, and I would never live independently. Adults with a learning disability Now I’m married and have children, are 10 times more likely to have I live in a three-bedroom house, serious sight problems than and hold down two jobs.” others, while children with a learning disability are 28 times As well as his role at SeeAbility, more likely to have serious sight Scott teaches at the University problems than others. of Hertfordshire as a visiting lecturer on the Learning Disability “For the last 10 years, I have been and Nursing courses and sits on working at a local level up to the Learning Disability England national level, to make sure that Representative Body. He also co- people with learning disabilities chairs the stakeholder group within had a voice,” Scott said. Transforming Care which works to However, he never thought his help make sure that people with efforts would be given any kind learning disabilities move out of an of recognition. assessment and treatment unit and go back into the community.

“What the BEM has done for me is to tell me that actually I need to carry on and keep doing more and more for people with learning disabilities, to make sure that they have a voice and get the eye care that they need.”

Find out more about Scott’s work by visiting seeability.org. If you have a story to share, why Scott presenting to a group not get in touch by emailing [email protected].

19 The Campaigner

Campaigning to stop blindness from contact lenses In 2011, Irenie Ekkishis lost her sight after contracting a rare waterborne infection via her contact lenses. Like most contact lens wearers, she knew nothing of the risk water exposure with her lenses could have on her vision. Since then, Irenie has been running a campaign called No Water to change contact lens packaging to help warn others of the danger.

20 The Campaigner

“My name is Irenie. One Saturday that most information online about morning in 2011, I woke up with the infection said that it was a a sore eye. It was streaming quite result of patients’ ‘poor hygiene’. a lot and I was having shooting She understood ‘poor hygiene’ to and stabbing pains. I went to the mean habits like storing lenses in pharmacy for some drops as I glasses of water or licking them thought I’d just got a little bacterial before wearing again. But actually, infection. But by that evening, I was Irenie read that poor hygiene in this so sensitive to light I couldn’t go context also included activities like into our bright kitchen.” swimming and showering while wearing lenses. She felt that most Irenie went to Moorfields Eye lens wearers wouldn’t be aware Hospital the next day and was that water exposure would also be diagnosed with a rare contact classed as ‘poor hygiene’. And many lens-related infection called would be putting themselves at risk acanthamoeba keratitis (AK). Within of this sight-threatening infection four days, she had permanent sight without knowing they were doing so. loss in her right eye. Irenie said: “What I wanted to Irenie said: “I’d always been an achieve with the campaign was active member of society. I loved my essentially to raise awareness of job, I’d just got married and moved the risk of water exposure while house. But after this happened wearing lenses and to encourage to me, I was on a regime of hourly the industry to be more vocal eye drops and I really couldn’t about this specific risk. It can have concentrate on much else, not least devastating consequences, but go back to work. isn’t really talked about.” “It was then that I found out AK is Over the course of a few weeks, entirely preventable if you avoid Irenie started her campaign the risk factors. by teaching herself how to “The shock of losing my eyesight use Twitter from her sofa. She so quickly hit me hard and I just tweeted the British Contact Lens thought I had to do something to Association, the Association of try and stop this from happening Contact Lens Manufacturers and to other people.” contact lens manufacturers asking whether they would support a Why campaign for “No Water”? “no water” warning being put on While researching AK, Irenie learned contact lens packaging.

21 The Campaigner

“Initially I was ignored,” Irenie Irenie’s No Water campaign has explained, “but over time, and evolved from one simple message, with persistence, I started to get to focus on other important areas, responses. I noticed that every time including how contact lenses are I got a response, the door opened sold and marketed to consumers. a little bit wider and I could take the “Contact lens packaging and conversation a little bit further.” advertising often features imagery to do with water. I’ve now added Campaign success another strain to the campaign “With the campaign, I managed to to convince manufacturers to persuade the British Contact Lens remove references to water in their Association to print stickers to go on marketing materials,” Irenie said. the front of contact lens packaging, featuring a logo that I had designed. “It’ll take time but I’m motivated to It is a very simple graphic, with a line see it through. I’ve got a massive through a tap, to denote the idea of network of support of friends, ‘no water’ with lenses. family and other patients, as well as support from charities The American Academy of like RNIB, Fight for Sight, and Optometry then did the same Moorfields Eye Hospital. thing, and recently we heard that the Cornea and Contact Lens "We need to see these important Society of Australia are also going changes happen that will help to be using the stickers, which is contact lens wears be safe in great news.” the future.”

What more is there to do? Irenie co-founded The New In 2016, Irenie’s work was Citizen Project in 2014, an recognised at RNIB’s Vision innovation consultancy which Pioneer Awards where she won works to help make people feel the Campaigner of the Year award. more like citizens rather than She was also able to raise the consumers. Find out more at profile of the No Water campaign newcitizenship.org.uk. message to a wider audience when she ran the NHS’ Twitter Irenie is also part of a Facebook account last year. The initiative group for people with AK. showcased patient stories – with If you would like to join, or to a different individual taking over find out more, visit facebook.com/ the account every week. AcanthamoebaKeratitis/ 22 Campaign Update Welcome to the section of Connect where we bring you up to date with RNIB’s campaigning news.

Know your rights We all know that blind and partially sighted people face all sorts of barriers on a day-to-day basis, that’s why RNIB campaigns for a more inclusive and accessible society. As we achieve change it’s essential that you know your rights and what you’re entitled to.

Accessible information Together we campaigned for accessible health information and provisions are in place for to make sure that you and other you to exercise. blind and partially sighted people We’ve created a toolkit that gives get important and sometimes you all the information about the sensitive health information in an law concerning the Accessible appropriate format. Our hard work Information Standard. We also paid off in 2016 when we secured have template letters you can the NHS Accessible Information download and complete so you Standard in England. can inform your doctors of your This standard means that anyone needs and how to complain if providing a service on behalf of NHS things go wrong. England or in adult social care, such as GP practices and dentists, must You can find information about provide information in a format that how to get what you need when it their patients can access. comes to health information and From appointment letters to what to do if you do not receive prescription dispensing labels, you information in your preferred are entitled to your information in format by visiting our campaign the format you need. These rights pages rnib.org.uk/campaign. 23 Changing Our World: campaigning with you

Campaigning society, Galloways, the committee have agreed to install signal in the UK control crossings. This agreement however, is no guarantee to action Ensuring our streets are accessible being taken up. Securing the for all blind and partially sighted crossings is going to be critical people is critical. over the next months. We’re challenging the increase Scottish campaigners are voicing in ‘shared spaces’ across the UK. concerns over shared space Some local councils have removed developments in Inverness, kerbs and controlled crossings to and Edinburgh. For create shared spaces, but which residents of Inverness, an are the only accessible way to intervention has already secured cross a road or cycle lane. amendments to planned developments, meaning that city Campaign success centre pavements will be retained. In January, strong objections were made by blind and partially sighted Last year in Northern Ireland, we people in Preston to a £60 million saw a landmark judgment in a shared space scheme. judicial review lead by campaigner Joanna Toner against Lisburn The local council had given the City Council. The council are now scheme the go-ahead, but after required to go back to the drawing the case was put forward, with board on their public space plans the backing of national charities and ensure that the needs of including RNIB and the local blind and partially sighted people are covered. Finally, in Wales, RNIB Cymru and Guide Dogs are currently working with Cardiff City Council Planning on the design and accessibility of shared space in the development of Central Square.

Get involved in campaigning against shared spaces in your area by visiting rnib.org.uk/campaign.

24 Changing Our World: campaigning with you

Meet your new Regional Campaign Officer RNIB's Regional Campaign Officers (RCOs) work across the UK with blind and partially sighted people to address the issues affecting them on a local level. Connect spoke to one RCO to find out how they work with local decision makers to bring about positive change. Terri Balon recently joined the team in the North West to become the ninth RCOs in England. Terri has aniridia, and was a long cane user Terri Balon before she got her guide dog, Daisy. Terri said: “Understanding the issues first-hand is helpful and “In the North West, among other I’m passionate about advocacy things, we are concerned with and campaigning. initiatives around shared space as curbs, controlled crossings and findable tactiles are being removed, “I have been involved in all of which help cane and guide campaigning with RNIB dog users to cross roads safely. as a volunteer since 2009 For Terri and the other RCOs, it is and became a member of important that people living with staff in December of last year. sight loss are involved in RNIB’s campaigning work and have a “It’s my job to find out how to make chance to speak up about the connections and influence decision issues that matter to them. makers and then work with our wonderful volunteer Campaign Terri said: “It’s the personal stories Co‑ordinators, all of whom have that have power. Decision makers sight loss. want to hear from the people who actually use their services.

25 Changing Our World: campaigning with you

“We really need blind and partially Make claiming PIP fair sighted people to get involved in campaigning. Unfit processes and poor decision making are leading to some people “It’s important to know that it’s who are entitled to Personal not about confrontation; it’s about Independence Payment (PIP) finding solutions and helping those being refused this crucial benefit, decision makers to work out the leaving them distressed and worse best options for us all. off. We’ve been campaigning to highlight the challenges of the “I am always inspired by PIP process for blind and partially something Margaret Meade, sighted people. an American Anthropologist, We want the Department for Work said: ‘Never doubt that a and Pensions to ensure the PIP small group of thoughtful assessment and decision-making committed citizens can processes are fair and accessible change the world. Indeed, it is for blind and partially sighted the only thing that ever has.’ people, taking into consideration their individual needs. Over 1,500 people and counting “That could be you, so come and have taken our action and written get involved locally and contact to their MP about this issue. We us today.” are now eagerly awaiting the government’s response to the If you are interested in recent Work and Pensions Select campaigning around in the Committee report on PIP and UK, call 020 7391 2123 and Employment Support Allowance to speak to your local Regional (ESA) and will share our next Campaigns Officer. steps soon.

For information, visit rnib.org.uk/actonpip.

We would like to dedicate this Jill worked tirelessly to fight edition of Campaign Update to against the inequalities she and Jill Grant, a long-time committed other blind and partially sighted campaigner, who sadly died in people experience daily. Jill will December 2017. be missed greatly. © Michael Leckie new trilogy, LaBelleSauvage. to him aboutthefirstbook inhis Connect Radio’s Red Szell spoke back inhislatest book.RNIB trilogy, HisDark Materials, are from hismostfamous fantasy published works,thecharacters around theworld.With almost20 books are enjoyed by people controversial author whose successful andsometimes Philip Pullmanisahugely new trilogy Philip Pullmantalksabouthis old. The story features afloodof earlier whenLyra isonly sixmonths La BelleSauvage, isset 10 years the first volume inthenewtrilogy, met Lyra, Pullman’s next novel, and Seventeen years after readers first religious belief inher world. of andlieattheheart to earth of thatfall dust,cosmic particles her destiny to discover thenature Lyra. Intheseries, she mustfollow worlds withateenage hero called fantasy novels set across parallel His Dark Materials isatrilogy of Book Lovers' Corner

27 Book Lovers' Corner

biblical proportions, a pair of brave “Well, the only thing is that this young rescuers who must keep book is for 12-year-olds and Lyra safe and a cast of sinister upwards. If I’m lucky, some young spies in a darkly brilliant odyssey people and some older people of adventures. will read it. “The only guideline I impose What drew you back into is of telling the story as well Lyra’s world? as I possibly can. Having an “I’d written two little books in awareness of a wide audience between the end of His Dark means you have to be extra Materials and the coming of this careful in your storytelling. You book so in a sense, I had never left. can’t frighten the grown-ups too “But I could see a longer story much, you see.” gathering, like a storm gathering in the distant sky and I couldn’t help Is the fact that demons don’t take being intrigued enough to go back their form until after a child has there and make it into a story.” hit puberty something to do with the nature and nurture debate? There’s a very unpleasant child "Yes it does, but I’m not specific molester in the book. Is he a about it because I want it to reflection of the different ways be open to interpretation and in which youth can be corrupted imagination too. I thought of Lyra’s either by ideology or physically? demon when I found something “You could see it like that but when wasn’t working in the story, rather I was writing him, he wasn’t like that. than when I first started writing. He was a villain and I made him as "When I realised that it was creepy as I could, but as with all children's demons that change villains, it’s much more fun to make shape and adult’s demons that him bad. You can’t make people are fixed, I saw I could tell a story good all the time or it wouldn’t be a that I’d been waiting all my life to story at all.” tell or since my own adolescence, which is the difference between You’re very against the labelling innocence and experience in of books for age bands or gender. William Blake’s terms." What guidelines do you impose on yourself when you know your books will to be read by children and young adults? 28 Book Lovers' Corner

What can we expect for the next part of the trilogy? “In the second and third book, Lyra will be about 20. The consequences of the events and the ideas that take place in La Belle Sauvage will be a long time germinating. But they will begin to sprout and blossom and produce whatever spines or thorns or poisons they do in the Secret Commonwealth, which is the name of the second book.”

Philip Pullman’s La Belle Sauvage is available to listen to Are you a man who plans out your on TB24390. To listen to more books or do you let them grow as interviews and conversations you write? about reading, catch Read On, broadcast on RNIB Connect “Oh I plan them meticulously, Radio every Friday at 1pm, after I’ve written them. I have and repeated Sundays at 2pm to write it first to see what and Mondays at 6pm. it’s going to be about. I don’t know when I start. I’ve got to be surprised, otherwise the thought of working for so many years to tell a story, all RNIB writing of which you know intimately competition already, it just chills the blood, I couldn’t do it, The competition is now I’d go mad. closed. Thanks to all of you who entered. Our panel of “I do take them apart and put them judges are going through together again meticulously after all the entries and we will I’ve written them. I think that’s the announce the winners in the right way to do it.” summer edition of Connect.

29 News

Voting in secret: 100 years on

This year marks 100 years of A contributor to the Turned Out some women having the right report said: “I don’t know if the to vote in national elections in member of staff placed the cross Britain, but sadly it’s still the case in the correct box or even if she that women with sight loss are placed my vote in the ballot box. I not always able to vote in secret, didn’t like having to tell a stranger or on their own. who I was voting for.” An RNIB report about the MP for Battersea, London and accessibility of last year’s general Shadow Minister for Disabled election showed 45 per cent of People, Marsha de Cordova has blind and partially sighted people nystagmus and is registered blind felt the system didn’t allow them (read her interview on page 11). to vote without assistance and She said: “It’s fantastic that we in secret. are celebrating the centenary, but obviously for us to be a fully Turned Out 2017 inclusive society we need to ensure that voting is accessible. “Why can’t we vote Turned electronically? Or why can’t we have some sort Out of electronic device that 2017 somebody could potentially use? Why can’t we have our

Why the UK voting system must change so blind voting papers in large print and partially sighted voters can be in sole control or in braille? It’s pretty of their right to a secret ballot. basic stuff.”

RNIB will be raising the issue of inaccessible voting during

1 Democracy Week in July. Find out more by signing up to the monthly campaign eNews at rnib.org.uk/campaigning. 30 News

Volunteers help signpost to sight loss advice service She added: “Patient footfall in some hospital eye clinics exceeds 15,000 A new pilot has launched in the in a six-month period. It is therefore North of England to help raise absolutely imperative that RNIB the profile of the Sight Loss thinks outside of the box.” Adviser service with the help Niamh Maguire, volunteer and of volunteers. genetics student at the University Sight Loss Advisers (also known of Manchester said: “I have learnt as Eye Clinic Liaison Officers so much about eye conditions or ECLOs) can help people in my volunteering role and the maintain independence while support available to people with adapting to living with sight loss, sight loss, as well as meeting lots of but sometimes patients are new people.” unaware of their existence. RNIB will use the feedback from the RNIB’s pilot scheme is aiming volunteer pilot to inform a rollout of to change all that by training the scheme nationally in September 18 volunteers across three of this year. hospitals in Greater Manchester and West Yorkshire. As well as helping to signpost A date for your diary... patients to the service, volunteers Next month, our nationwide will also provide basic information event, The Big Connection, will about RNIB’s other services. bring together people from across the Connect community. Nicola Stanley-Dickinson, RNIB’s Volunteer Co-ordinator and a former Sight Loss Adviser said the From 31 May to 2 June, pilot aims to ensure patients are get involved in the events not missed and instead everyone and activities happening received the emotional and practical in your area. Find out more support they need. at rnib.org.uk/bigconnection. 31 Your Quarterly Connect

Your Quarterly Connect

The Weekly Connect is a show like climbing, rowing, walking and on RNIB Connect Radio that running. We have a youth club features contributions from as well,” Helen said. across the community around Yvonne Walker is a service user the UK. Here are a couple of at the Beacon Centre. Her optic highlights making the air waves nerves were destroyed following recently from the show. an operation to treat a brain tumour. “I lost my sight overnight. Local Society: I’d got two young daughters so I The Beacon Centre just had to get on with life and the for the Blind Beacon Centre helped me do that,” Yvonne explained. The Beacon Centre for the Blind supports up to 3,000 people in the West Midlands every year “I started off doing crafts across two sites in Sedgley and over the years I’ve done and Stourbridge. water skiing, climbed the gladiator wall, and done lots It has almost 200 volunteers of different things. and 100 members of staff. Helen Brown, the Beacon Centre’s Communications Development “I’ve also had computer Manager, explains more about the lessons, and I’m learning on huge variety of services on offer. an iPad at the moment. It has given me the chance to talk to “One of our specialisms is technology. We are constantly my children about technology looking to see where we can use and now they know what I’m technology to help improve the on about and I can understand lives of people with sight loss. what they’re on about too.” “We also have the UK’s first accredited social enterprise If you’d like to find out more opticians, a hugely successful about the Beacon Centre, employment programme and visit beaconvision.org. our activity group does things

32 Your Quarterly Connect

The Welsh Connection New to the RNIB Connect Radio In every programme, blogger Ffion schedule is a show dedicated to Miles talks about what she’s been people in Wales. Every fortnight, up to, whether it’s travelling solo The Welsh Connection raises topics around Australia or attending a fan that are relevant to people with convention in Inverness. low or no vision in Wales including Lynn explained, “I’m very excited health and sports. because it is interesting to find out During the show, blind and what people in Wales are getting partially sighted people talk up to.” to presenter Lynne Morgan, You can listen to The Welsh one of RNIB’s Welsh broadcast Connection every fortnight on producers, about their interests, Wednesdays at 6pm and repeated concerns and life in Wales. on Saturdays at 4pm. Tune in to Contributors have included RNIB Connect Radio, broadcast Stephen Donovan who has taken on Freeview 730 and online on up Visually Impaired Tennis insightradio.co.uk. and entered his first national competition, Hilary Lester who has recently had to come to terms with The Weekly Connect on RNIB the death of her beloved guide dog Connect radio is at 1pm every Yalena and Chloe Clarke, a visually Monday. You can also find every impaired actress who is pushing the show podcast via Audioboom, boundaries on audio description. iTunes and all the usual podcast outlets. 33 Food Fanatics

Recipe: Sticky Equipment Jamaica ginger cake • Two small saucepans • Talking measuring jug If you enjoy baking and are a fan • Food processor of ginger and cinnamon flavours, RNIB Connect Radio’s resident chef • Measuring spoons Ian Gentle has a delicious recipe • Mixing bowl for Jamaica cake. • Cake tin Ingredients Method • 275 millilitres of whole milk 1. Start by pre-heating the oven to gas mark four, that’s 180 115 grams of dark brown • degrees centigrade, or 375 or muscovado sugar Fahrenheit. 115 grams of black treacle • 2. Weigh out 115 grams of sugar or molasses and put it into one of the small • 115 grams of golden syrup saucepans. Then add 275 • 225 grams plain flour, plus millilitres of milk to the sugar. three heaped tablespoons 3. Warm the milk on a low heat of plain flour for later use in until the sugar has dissolved. the recipe It’ll take a couple of minutes. • 1 and a half teaspoons of Then set aside to cool. baking powder 4. Then, measure out 115 grams • 1 teaspoonful of bicarbonate of black treacle or molasses or baking soda and 115 grams of golden syrup • 1 tablespoonful of and pour that into the other ground ginger saucepan and heat it on a low heat until it’s runny. Before it • 1 teaspoon of ground cinnamon gets hot, take it off the heat and • 1 teaspoon of mixed spice leave it to cool. • 115 grams of cubed margarine 5. Measure out 225 grams of flour (the kind wrapped in gold foil and tip into the food processor. rather than in a tub). To the flour, use the measuring spoons to add the bicarb, the baking powder, ginger, cinnamon and mixed spices.

34 Food Fanatics

6. Weigh out 115 grams of 10. To make the cake nice and margarine. Cut the margarine sticky, turn the cake tin over into cubes and put it into and tap the base of the tin until the food processor. Rub the the cake comes out. Wrap the flour and the margarine and cake in cling film and leave it at the spices altogether until it room temperature overnight or resembles breadcrumbs. preferably for 24 hours, before 7. Transfer the breadcrumbs into you start slicing it. a mixing bowl, and add the syrup mixture and the milk If you enjoy cooking or baking, and sugar. Stir the whole thing share with the Conect team at together for about one minute. 0303 1234 555 the recipes you 8. Add an extra three heaped love following. tablespoons of plain flour and mix again for another For more recipes and food talk, 30 seconds. tune in to the Morning Mix with Jill 9. Finally, pour the mixture into Barkley on RNIB Connect Radio, your cake tin and pop it in the on Freeview 730, and online on oven for 15 minutes. When insightradio.co.uk, weekdays from it’s done, take it out and leave 10am to 1pm. to cool.

35 Information Directory

Contact the RNIB RNIB Helpline Connect team Call 0303 123 9999 Call 0303 1234 555 Email [email protected] Email [email protected] Visit rnib.org.uk/ask Write to The Helpline is your one stop Connect magazine, RNIB, 105 shop for help and advice. You Judd Street, London WC1H 9NE can use it to access the range of Want more Connect stories? services we offer, including: Sign up to the Connect eNews at • eye health information rnib.org.uk/connect. • emotional support The Connect team can update the format in which you receive • benefits advice Connect. You can choose from large • product information print, braille, audio CD, USB or by email. They can also help if you • fundraising, volunteering have a story to share. and campaigning Listen to RNIB Connect Radio • RNIB Library, including 24 hours a day, seven days a week Talking Books, Overdrive, on Freeview 730 and online on RNIB Newsagent and insightradio.co.uk. Or download telephone groups. and listen to podcasts via The Helpline is open Monday Audioboom, iTunes or your regular to Friday, 8am to 8pm and podcast app. Saturday 9am to 1pm. Calls Sign up to RNIB’s monthly cost no more than a standard campaigning eNews at rate call to a 01 or 02 number. rnib.org.uk/campaigning.

RNIB Infoline Call 0203 432 1488 to hear useful recorded information and listen to our most popular publications, including Connect magazine, over the phone. RMBM_180129