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

Issue 19 / Spring 2018

Connect Bringing together everyone affected by sight loss

rnib.org.uk/connect-magazine

Help us celebrate our 150thSince 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 connect@rnib.org.uk, 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.

This edition is dedicated to all the blind and partially sighted people who are doing inspiring work across the UK. We can only focus on a few inside this edition.

Inside this special edition, you can read about Scott Watkin, who has been awarded a British Empire Medal for his work in the disability sector on page 18, and Tony Giles, 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 contact lens wearers on page 20 and, Marsha de Cordova explains what it’s like be a blind MP in Parliament on page 11.

Hannah Adams, Connect magazine Editor

Contents2 Helpuscelebrateour 150th

3 Welcome

4 The Traveller

8 The Composer

11 The MP

14 The Tech Guru

18 The Charity Worker

20 The Campaigner

23 Campaign Update

27 Book Lovers' Corner

30 News

32 Your Quarterly Connect

34 Food Fanatics

36 Information Directory

From the cover: Meet the trailblazers: the adventurer, campaigner,MP andothersshare theirincrediblestories

© RNIB April 2018 Registered charitynumbers226227 and SC039316

Welcome

3

The intrepid traveller

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

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.

Tony Giles has been globetrotting for more than 20 years and has been to some of the most inaccessible places on earth. As a man who is totally blind and partially deaf, his solo adventures have captivated the world’s media.

“ I started travelling in 1999when I spent five monthsin Australia, New Zealand,Vietnam and Thailand.I had been studying aboutAustralasia and the UnitedStates as a kid so I knewabout the countries.”

Tony went to Exhall Grange in Coventry, a boarding school where he was taught to be confident aboutgetting around.

“ I was told I would cross roads and go to the shops and catch buses. So travelling was sort of just natural really. I was confident it’s whatIenjoyeddoing.”

People’s reactionsThe BBC's Travel Show has featured Tony’s story and even sent a film crew to follow him on a trip to Palestine where he appears to blend in naturally, chatting to people and getting around with ease.

That’s not to say people react to a blind man in the same way in different countries.

“Some people come over to you and ask you questions while others just assist you without speaking. In England, I find people are quite worried about offending you whereas if you go to the States, Australia and New Zealand, people talk more. I find that kind of refreshing.

“On the whole, the generosity I’ve hadandthekindnessI’vebeen shown around the world has beenfantastic.It’sstaggering,”Tony explained.

“People see you wandering around with a white stick on your own, and they want to help; they sort of want to protect you.

“At other times it can be problematic. Some people panic when they see a blind person, and don’t really know what to do. They want to help but they’re not sure if they should touch you, or if they might offend you by speaking.

“I have found the countries that have had a greater exposure to disabled and blind people have a muchmoreinteractivereaction,more confident maybe to some.

5

The Traveller

The difficulties of travel as a blind personOne of the main issues we can all face when in another country is accessing the local currency. But if you're blind and deaf, it can be quite a bit harder than for most.

“ATM machines have swallowed my bankcardinthepast,”Tonysaid.“Itwas a bit problematic the first time I was in the middle of Africa with no moneyandnocreditcard.”

In order to use a foreign cash machine, Tony relies on finding someone who he feels he can trust to help him work out how they work.

If getting hold of cash wasn’t daunting enough, logistical dilemmas have also been a factor for Tony.

“The first time I was travelling in Africa, every time I took a minibus my backpack would go in a different part of the bus and I didn’t know if I wouldeverseeitagain."

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 drains, broken pavements and bridges. Trying to avoid thousands of bicycles all moving at once in Vietnam was all kinds of chaos. I had to cross the streets by moving with the bicycles. It sounds a bit suicidal really,”Tonysaidlaughing.

Tony's favourite experienceAfter flying into the National Park in Venezuela and spending a day canoeing up a river, Tony hiked up to the highest waterfall in the world, Angel Falls.

“When I got to the top, I sat on a rock listening to the sound of the waterfall. It felt like a huge achievement,”Tony explained.

The hike had involved walking through soft sandy ground, over rocks and tree roots and climbing steps over a foot high.

“It was very challenging and it took most people about an hour and a half to get to the waterfall. It took methreehours,”Tonylaughed.

Tony at the Hacha Waterfall, Venezuela

6

The Traveller

People say to me: “You can’t experience it unless you can see it.”Over the years, many people have questioned Tony about why he travels when he has such limited vision and hearing. But for Tony, seeing and hearing are only a small part of the fulfilment he gains from visiting new countries.

“To experience a country properly, you need to use all your senses. It’s about tasting different food and

hearing exotic music. It’s about the culture, and walking over cobbles and up and down mountains and usingyourfeet,”Tonyexplained.

“Blind people are probably much more aware of the 3D image of a place rather than a sighted person who wouldn’t notice any ofthat.I thinkthat’samuchmoreenriching experience than just seeingsomething.”

“ People are a country’s real culture and you don’t need to see someone tomeetandtalkto them.”

Feeling inspired to push yourself out of your comfort zone, but don’t fancy travelling solo like Tony? Try one of RNIB’s challenge events: skydiving, treks, marathons and group walks. Visit rnib.org.uk/events to find an event foryou.

Tony standing at the base of the Myrdalsjokull glacier, Iceland.

How to be a globetrotterWhat are the secrets to enjoying epic adventurers around the world? Well, Tony claims it comes down to two things: good planning and confidence.

“Make sure you do plenty of planning. I use my laptop with JAWS to research the places I want go to, the hotels I’ll stay in and how I can travel from A to B.

“Start by going to a new place in the UK for a weekend either by yourself or with a visually impaired friend to see how you get on. Then, when you feel more confident and comfortable, take gradual steps and broadened your horizons.

“Finally, just give it a go! Anyone can do what I’ve done. You just need the confidence to try.”

7

The Traveller

“ 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 opticnerveglioma.”

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 texturetoo.

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 soundofalldifferenttypes.”

When she was four, Alexia started singing in her school choir and from the age of nine, she sang in the Girls’ Choir of Great St Mary’s Church, University Cambridge.

“I wrote a choral piece which the choir performed. Coincidentally on the same day that was performed, my first instrumental composition was commended in the Cambridge YoungComposeroftheYear.”

It wasn’t until Alexia was 12 years old, and in a workshop writing a song in a foreign language, that the idea of being a composer first came up.

“The person advising us remarked: ‘I thinkyouhavethemakingsofacomposer,doyouhavelessons?’”

Proudest momentLast year, Alexia was one of seven young composers to be commissioned by Classic FM to write a piece of music to celebrate the radio station’s 25th birthday, whichwasplayedbythe RoyalLiverpool Philharmonic Orchestra. Alexia wrote her piece for flute, harp, clarinet and percussion.

However, hearing her music being playedbytalentedmusicians iswhatAlexiafindsparticularly enjoyable.

Alexia said: “In the National Youth Orchestra of Great Britain, we have our pieces performed in unconventional places. Last summer we had our pieces played in the Tate Modern which was strange but so exciting.

“I had a piece performed withquite a substantial cello solo.The cellist who played thepart was just extraordinary. I was enthralled by her and atthe end of the performanceshe came over and said howmuch she’d enjoyed playingmy piece. We’ve beencorresponding ever since.”

Inspiration On her website, Alexia attributes the inspiration for her music to a wide range of philosophical, Buddhist, environmental and synaesthetic themes. 

She said: “Personally, I’m very inspired by concepts, so I might read a poem or see something in current affairs and then music comes out. My synaesthesia is not the most important factor usually. It’s more like a kind of helpful tool togetfromconcepttomusic.”

Alexia writes the pitches down in braille music notation and then dictates them to an amanuensis,

9

The Composer

or artisticassistant,whotranscribesthem onto a notation software.

“ I’m not a very good publicspeaker, and music justhappens to be one of theways in which I react tothe arts.”

The futureEven though Alexia has an exceptional talent for writing music, she doesn't always believe in her ability. “I have a chronic lack of confidence and I don’t actually believe I am a composer at all, so I justtakeotherpeople’swordforit thatIam,”Alexiasaid.

Her ambition is to study Music at Cambridge University, and complete a postgraduate degree in Composition.

As well as pursuing music and poetry, Alexia would like to be a therapist or an environmental correspondent for the BBC.

“In a completely ideal world I wouldspendmycareerasacomposer and poet and do very little else. However, in the reality, commissions don’t come every day and no one’s probably ever going to pay me to write poetry, so I will need to have something else as well. But music and poetry will still be my main focuses.

Listen to Alexia’s music on her website inspirarts.com. Find out about the music services RNIB offers at rnib.org.uk/music.

10

The Composer

“ 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 ofthatdayis,mydaycan be pretty varied. I could be attending meetings and events, andalsobeingintheChamber,”Marsha explained.

“I go through the Order Paper (a dailylistofthebusinessoftheHouse 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 wanttoputin.”

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 more on PIP, please see page 26.

Marsha asked an UQ following the announcement of the review seeking clarity as to what this would mean. She sought to understand how many people would see an increase, and a guarantee that no one would see their benefit reduced asaresultof thereview.

“On that particular day, I had to get myself prepared for my question, get my speech written, and ensure that I was prepared for the question when it came up in the Chamber.

“You don’t always get granted urgent questions as it has to be a reallypressingissue,”Marshasaid.“The previous evening I had been on the News at Ten talking about PIP and also on Newsnight. It was quiteexciting.”

Job satisfactionBefore becoming a Labour MP, Marsha was the Engagement and Advocacy Director at Thomas Pocklington Trust and also worked for Action for Blind People.

“Throughout my career I’ve always tried to be an advocate for people who do not have a voice, particularly as a strong disability rights campaigner. I continue todothatas anMPaswell,”Marsha said.

“I feel lucky that I have the opportunity to serve the people of Battersea, and also be a voice for disabledpeoplein Parliament.

“We’ve got a long way to goin terms of representationof disabled members ofParliament. There are notmany of us and there needsto be more. That goes forneeding more black,Asian and ethnic minorityMPs as well.”

Navigating WestminsterThe Palace of Westminster was built inthemiddleofthe19thcentury and as such is not an accessible building.

“One of my bugbears about my office being in the Palace is the lighting is fairly poor in this part of the estate. But it is a great, historic building, and it’s a pleasure and an honourtocallthismyplaceof work.”

“Hopefully as part of the restoration process of the Palace, they will look at all issues of accessibility as part of the whole process.”

Adaptions for workAll of Marsha’s papers have to be produced in large print so she 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 The Guardian 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 large print version didn’t reach her office until late evening, long after the issue had been debated.

“In all my jobs, I have had reasonable adjustments and adaptations made. For example in my current role, I have a sighted assistant who is pretty much my eyes. They help me get around, navigating the building, and at external meetings and events.

“I’m pleased to say now they are sending me things on time, which is good.”

Entering politics“I want to encourage every visually impaired person to get involved in politics. Whether it’s getting involved locally, or becoming an MP or local counsellor, they should definitelydoit,”Marshasaid.

“Sometimes you may have to be the first person to do something to actually break down barriers and open up access to political

parties. I had to educate people whenIfirst gotpoliticallyengagedall those years ago. This will help ensure that disabled people coming behind us then don’t have to face the same barriers.

“As a disabled woman, I feela weight of responsibilitybecause I’m hererepresenting many millions ofdisabled people. I just wantmake sure that I serve anddo my very best to representtheir voices.”

Contact Marsha about national issues relating to benefits and employment by emailing marsha.decordova.mp@parliament.uk, calling 020 7219 0209 or writing to Marsha de Cordova MP, House of Commons, Westminster, London SW1A 0AA.

Marsha asking her first question in Parliament.

13

The MP

“ We are on the cusp of the biggest change in terms of how technology will transform people’s lives”

Robin Spinks has spent his career dedicated to technology and getting the word out on how it can make life easier. Robin has limited sight due to albinism and so is well placed to influence companies like Samsung and Apple to understand what blind people need.

Tech enabling positive change“I feel really optimistic about so manydifferenttechnologies,”Robin said.

“I think Artificial Intelligence (AI) hasn’t really taken off yet for mainstream consumers. AI is used to enable smart speakers in the homes, like the Amazon Echo and Google Home.

“These devices connect you to the internet and allow you to do things like order your weekly shop, contact friends and family around the world and check train information, just by usingyourvoice,”Robinsaid.

“But we’re really only at the start of the whole explosion of AI having a roleinourlives.”

Self-driving cars“I think transport is going to be an absolutely feast of opportunity in thenextfewyears."

14

The Tech Guru

Mobility and getting from A to B off thepublictransportgridisahuge challenge for anybody with sight loss.

That’s why another area of technology which Robin believes will impact on people’s lives is connected autonomous vehicles, sometimes referred to as self‑drivingcars.

“Connected autonomous vehicle is thecatch‑alltermforthingswhichmove around which are powered by computers. That could be not only independent autonomous cars but things like helicopters too,”Robinsaid.

“I was lucky enough a few months ago to get a trip around Mountain ViewinCaliforniainaself‑drivingcar. It is quite a profound experience

when you first travel alone and recognise that a computer is safely and very capably taking you around a town centre.

“This would have been thestuff of sci-fi just a few yearsago, but it’s becoming real,”Robin said. “Now, there areplaces in the world wherethere are large numbers ofautonomous vehicles on theroad, albeit in a test capacity.But with many self-drivingfeatures like auto park,lane control and collisionavoidance, we are edgingcloser to a world where we’vegot fully autonomous cars on the road.”

Gre

ndel

khan

/wik

icom

mon

s

15

The Tech Guru

Equality through technologyPrior to working as RNIB’s Senior Innovation and Technology Relationships Manager, Robin spent a number of years in Africa and South Asia influencing governments and developing low cost assistive aids.

“Artificial Intelligence and connected autonomous vehicles will probably be two of the biggest things that we will look back on 15 or 20 years from now as pivotal turning points.

“I think for blind and partially sighted people, something which enables us to overcome our mobilitychallengeisabsolutely enormous.

“Thinkingbeyondself‑drivingcars, with some of the navigation technology that’s coming along including robotic devices, people may not have to use a guide dog to be assisted.

“That’s not to say that therewon’t be a role for guidedogs, because we knowthat there always will be.People and animals have avery special bond, but I thinkpeople have asked a question‘Will guide dogs be necessaryin the future?’

“What will matter to people is that they have the right solution for them, as an individual. So I think the opportunity to bring about greater equality has never been greater,”Robinsaid.

Technology at homeFrom smartphones and tablets to smartwatches and trackers, Robin is always eager to try out the latest technology.

“I’m often found enthusing and sharing ideas about technology.

16

The Tech Guru

I’ve spent a lot of time with wearable tech like smartwatches. Of course PCs still have a role, but only occasionally.

“Technology is everywhere that I can put it in my home and sometimes it’s in places that you can’t even put it. And I’m constantly looking for new ways to use it to just make life more fun, engagingandenjoyable.”

“If you came to my house we’ve set everythingupwithsmartplugs,”Robin explained. “Smart plugs are plugsthathaveawi‑fireceiverthatyou plug your 13 amp plug into. I’m usingthemwiththingslikesmart lightbulbs.

“Being able to turn the lights on and off remotely and using a coloured light that works for us in the house is fantastic. Just imagine instead of having white light bulbs, you can have one of 16 million colours,”Robinsaid.

Accessibility is keyAlthough he loves trying out new technologies and embracing the fun that’s to be had with devices and functionality, Robin remains resolute on not taking his eye off maintaining the accessibility agenda.

“We can’t relax just yet. There are lots of technologies being invented where blind and partially sighted

people’s needs have not been accommodated,”Robinexplained.

“We need to accelerate that agenda so development always takes account of people’s needs and products, services and technologies are developed inclusively. We should not be retrofitting new technology with accessibility in mind. We need to getbeyondthatasabigpriority.”

Robin’s three tech tips1. Experiment with dictation and

voice control options on your smartphone. You don’t always have to type.

2. Try one new piece of tech every time you get the chance. Variety helps you pin down the best experiences.

3. Remember, if something feels awkward or difficult, there is probably a better option being developed just around the corner like a better app or online service, so don’t be put off.

As well as advising tech companies on accessibly, RNIB provides a training and transcription services to businesses to help them meet the needs of their blind and partially sighted customers. Find out more at rnib.org.uk/rnib-business.

17

The Tech Guru

Charity worker recognised in 2018 New Year HonoursIn the New Year’s Honours List, Scott Watkin was awarded a British Empire Medal (BEM) for his tireless work teaching people with learning disabilities about eye care.

Scott works for the charity, SeeAbility as an Eye Care and Vision Development Officer. He has a learning disability and an eye conditioncalledkeratoconuswhich affects the cornea.

“Back in November, I received a letter through the post. I didn’t have a clue what this letter was about and to my surprise I had got a British Empire Medal for services to people with learning disabilities. I started crying when I told my wife,”Scott explained.

As part of his role, Scott talks to people about his eye condition and helps other people with learning disabilities to make sure

18

The Charity Worker

they get the eye care and vision services they need.

Adults with a learning disability are 10 times more likely to have serious sight problems than others, while children with a learning disability are 28 times more likely to have serious sight problems than others.

“For the last 10 years, I have been working at a local level up to national level, to make sure that people with learning disabilities hadavoice,”Scottsaid.

However, he never thought his efforts would be given any kind of recognition.

“I was told I’d never get a job, I’d always live in a care home, and I wouldneverliveindependently.Now I’m married and have children, Iliveinathree‑bedroomhouse,andholddowntwojobs.”

As well as his role at SeeAbility, Scott teaches at the University of Hertfordshire as a visiting lecturer on the Learning Disability and Nursing courses and sits on the Learning Disability England RepresentativeBody.Healsoco‑chairs the stakeholder group within Transforming Care which works to help make sure that people with learning disabilities move out of an assessment and treatment unit and go back into the community.

“What the BEM has done forme is to tell me that actually I need to carry on and keepdoing more and more forpeople with learningdisabilities, to make sure thatthey have a voice and get theeye care that they need.”

Find out more about Scott’s work by visiting seeability.org. If you have a story to share, why not get in touch by emailing connect@rnib.org.uk.

Scott presenting to a group

19

The Charity Worker

Campaigning to stop blindness from contact lensesIn 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 morning in 2011, I woke up with a sore eye. It was streaming quite a lot and I was having shooting and stabbing pains. I went to the pharmacy for some drops as I thought I’d just got a little bacterial infection. But by that evening, I was so sensitive to light I couldn’t go intoourbrightkitchen.”

Irenie went to Moorfields Eye Hospital the next day and was diagnosed with a rare contact lens‑relatedinfectioncalledacanthamoeba keratitis (AK). Within four days, she had permanent sight lossinherright eye.

Irenie said: “I’d always been an active member of society. I loved my job, I’d just got married and moved house. But after this happened to me, I was on a regime of hourly eye drops and I really couldn’t concentrate on much else, not least go back to work.

“It was then that I found out AK is entirely preventable if you avoid the risk factors.

“The shock of losing my eyesight so quickly hit me hard and I just thought I had to do something to try and stop this from happening tootherpeople.”

Why campaign for “No Water”?While researching AK, Irenie learned

that most information online about the infection said that it was a result of patients’ ‘poor hygiene’. She understood ‘poor hygiene’ to mean habits like storing lenses in glasses of water or licking them before wearing again. But actually, Irenie read that poor hygiene in this context also included activities like swimming and showering while wearing lenses. She felt that most lens wearers wouldn’t be aware that water exposure would also be classed as ‘poor hygiene’. And many would be putting themselves at risk ofthissight‑threateninginfectionwithout knowing they were doing so.

Irenie said: “What I wanted to achieve with the campaign was essentially to raise awareness of the risk of water exposure while wearing lenses and to encourage the industry to be more vocal about this specific risk. It can have devastating consequences, but isn’treallytalkedabout.”

Over the course of a few weeks, Irenie started her campaign by teaching herself how to use Twitter from her sofa. She tweeted the British Contact Lens Association, the Association of Contact Lens Manufacturers and contact lens manufacturers asking whether they would support a “nowater”warningbeingputoncontact lens packaging.

21

The Campaigner

“InitiallyIwasignored,”Irenieexplained, “but over time, and with persistence, I started to get responses. I noticed that every time I got a response, the door opened a little bit wider and I could take the conversationalittlebitfurther.”

Campaign success“With the campaign, I managed to persuade the British Contact Lens Association to print stickers to go on the front of contact lens packaging, featuring a logo that I had designed. It is a very simple graphic, with a line through a tap, to denote the idea of ‘no water’ with lenses.

The American Academy of Optometry then did the same thing, and recently we heard that the Cornea and Contact Lens Society of Australia are also going to be using the stickers, which is greatnews.”

What more is there to do?In 2016, Irenie’s work was recognised at RNIB’s Vision Pioneer Awards where she won the Campaigner of the Year award. She was also able to raise the profile of the No Water campaign message to a wider audience when she ran the NHS’ Twitter account last year. The initiative showcased patient stories – with a different individual taking over the accounteveryweek.

Irenie’s No Water campaign has evolved from one simple message, to focus on other important areas, including how contact lenses are sold and marketed to consumers.

“Contact lens packaging and advertising often features imagery to do with water. I’ve now added another strain to the campaign to convince manufacturers to remove references to water in their marketingmaterials,”Ireniesaid.

“It’ll take time but I’m motivated to see it through. I’ve got a massive network of support of friends, family and other patients, as well as support from charities like RNIB, Fight for Sight, and Moorfields Eye Hospital.

"Weneedtoseetheseimportantchanges happen that will help contact lens wears be safe in the future.”

Irenie co-founded The New Citizen Project in 2014, an innovation consultancy which works to help make people feel more like citizens rather than consumers. Find out more at newcitizenship.org.uk. Irenie is also part of a Facebook group for people with AK. If you would like to join, or to find out more, visit facebook.com/AcanthamoebaKeratitis/

22

The Campaigner

Know your rightsWe all know that blind and partially sighted people face all sorts of barriersonaday‑to‑daybasis,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 informationTogetherwe campaignedforaccessible health information to make sure that you and other blind and partially sighted people get important and sometimes sensitive health information in an appropriate format. Our hard work paid off in 2016 when we secured the NHS Accessible Information Standard in England.

Thisstandardmeans thatanyoneproviding a service on behalf of NHS England or in adult social care, such as GP practices and dentists, must provide information in a format that their patients can access.

From appointment letters to prescription dispensing labels, you are entitled to your information in theformatyouneed. These rights

and provisions are in place for you toexercise. 

We’ve created a toolkit that gives you all the information about the law concerning the Accessible Information Standard. We also have template letters you can download and complete so you can inform your doctors of your needs and how to complain if things go wrong.

You can find information about how to get what you need when it comes to health information and what to do if you do not receive information in your preferred format by visiting our campaign pages rnib.org.uk/campaign.

Campaign UpdateWelcome to the section of Connect where we bring you up to date with RNIB’s campaigning news.

23

Campaigning in the UKEnsuring our streets are accessible for all blind and partially sighted people is critical.

We’re challenging the increase in ‘shared spaces’ across the UK. Some local councils have removed kerbs and controlled crossings to create shared spaces, but which are the only accessible way to cross a road or cycle lane.

Campaign successIn January, strong objections were made by blind and partially sighted people in Preston to a £60 million shared space scheme.

The local council had given the schemethego‑ahead,butafterthe case was put forward, with the backing of national charities including RNIB and the local

society, Galloways, the committee have agreed to install signal control crossings. This agreement however, is no guarantee to action being taken up. Securing the crossings is going to be critical over the next months.

Scottish campaigners are voicing concerns over shared space developments in Inverness, Glasgow and Edinburgh. For residents of Inverness, an intervention has already secured amendments to planned developments, meaning that city centre pavements will be retained.

Last year in Northern Ireland, we saw a landmark judgment in a judicial review lead by campaigner Joanna Toner against Lisburn City Council. The council are now required to go back to the drawing board on their public space plans and ensure that the needs of 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 OfficerRNIB'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 before she got her guide dog, Daisy.

Terri said: “Understanding the issuesfirst‑handishelpfulandI’m passionate about advocacy and campaigning.

“I have been involved incampaigning with RNIBas a volunteer since 2009 and became a member of staff in December of last year.

“It’s my job to find out how to make connections and influence decision makers and then work with our wonderful volunteer Campaign Co‑ordinators,allofwhomhavesight loss.

“In the North West, among other things, we are concerned with initiatives around shared space as curbs, controlled crossings and findable tactiles are being removed, all of which help cane and guide dog users to cross roads safely.

For Terri and the other RCOs, it is important that people living with sight loss are involved in RNIB’s campaigning work and have a chance to speak up about the issues that matter to them.

Terri said: “It’s the personal stories that have power. Decision makers want to hear from the people who actually use their services.

Terri Balon

25

Changing Our World: campaigning with you

“We really need blind and partially sighted people to get involved in campaigning.

“It’s important to know that it’s not about confrontation; it’s about finding solutions and helping those decision makers to work out the best options for us all.

“I am always inspired bysomething Margaret Meade,an American Anthropologist,said: ‘Never doubt that asmall group of thoughtfulcommitted citizens canchange the world. Indeed, it isthe only thing that ever has.’

“That could be you, so come and get involved locally and contact us today.”

If you are interested in campaigning around in the UK, call 020 7391 2123 and to speak to your local Regional Campaigns Officer.

Make claiming PIP fairUnfit processes and poor decision making are leading to some people who are entitled to Personal Independence Payment (PIP) being refused this crucial benefit, leaving them distressed and worse off. We’ve been campaigning to highlight the challenges of the PIP process for blind and partially sighted people.

We want the Department for Work and Pensions to ensure the PIP assessmentanddecision‑makingprocesses are fair and accessible for blind and partially sighted people, taking into consideration their individual needs.

Over 1,500 people and counting have taken our action and written to their MP about this issue. We are now eagerly awaiting the government’s response to the recent Work and Pensions Select Committee report on PIP and Employment Support Allowance (ESA) and will share our next steps soon.

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

We would like to dedicate this edition of Campaign Update to Jill Grant, a long-time committed campaigner, who sadly died in December 2017.

Jill worked tirelessly to fight against the inequalities she and other blind and partially sighted people experience daily. Jill will be missed greatly.

Changing Our World: campaigning with you

© M

icha

el L

ecki

e

Philip Pullman talks about his new trilogyPhilip Pullman is a hugely successful and sometimes controversial author whose books are enjoyed by people around the world. With almost 20 published works, the characters from his most famous fantasy trilogy, His Dark Materials, are back in his latest book. RNIB Connect Radio’s Red Szell spoke to him about the first book in his new trilogy, La Belle Sauvage.

His Dark Materials is a trilogy of fantasy novels set across parallel worlds with a teenage hero called Lyra. In the series, she must follow her destiny to discover the nature of dust, cosmic particles that fall to earth and lie at the heart of religious belief in her world.

Seventeen years after readers first met Lyra, Pullman’s next novel, and the first volume in the new trilogy, LaBelleSauvage,isset10 yearsearlier when Lyra is only six months old. The story features a flood of

27

Book Lovers' Corner

27

biblical proportions, a pair of brave young rescuers who must keep Lyra safe and a cast of sinister spies in a darkly brilliant odyssey of adventures.

What drew you back into Lyra’s world?“I’d written two little books in between the end of His Dark Materials and the coming of this book so in a sense, I had never left.

“But I could see a longer story gathering, like a storm gathering in the distant sky and I couldn’t help being intrigued enough to go back thereandmakeitintoastory.”

There’s a very unpleasant child molester in the book. Is he a reflection of the different ways in which youth can be corrupted either by ideology or physically?“You could see it like that but when I waswritinghim,hewasn’tlikethat.He was a villain and I made him as creepy as I could, but as with all villains, it’s much more fun to make him bad. You can’t make people good all the time or it wouldn’t be a storyatall.”

You’re very against the labelling of books for age bands or gender. What guidelines do you impose on yourself when you know your books will to be read by children and young adults?

“Well, the only thing is that this bookisfor12‑year‑oldsandupwards. If I’m lucky, some young people and some older people will readit.

“The only guideline I impose is of telling the story as well as I possibly can. Having an awareness of a wide audience means you have to be extra careful in your storytelling. You can’tfrightenthegrown‑upstoomuch,yousee.”

Is the fact that demons don’t take their form until after a child has hit puberty something to do with the nature and nurture debate?"Yesitdoes,butI’mnotspecificabout it because I want it to be open to interpretation and imagination too. I thought of Lyra’s demon when I found something wasn’t working in the story, rather than when I first started writing.

"WhenIrealisedthatitwaschildren's demons that change shape and adult’s demons that are fixed, I saw I could tell a story that I’d been waiting all my life to tell or since my own adolescence, which is the difference between innocence and experience in WilliamBlake’sterms."

28

Book Lovers' Corner

Are you a man who plans out your books or do you let them grow as you write?

“Oh I plan them meticulously,after I’ve written them. I haveto write it first to see whatit’s going to be about. I don’tknow when I start. I’ve got tobe surprised, otherwise thethought of working for somany years to tell a story, allof which you know intimatelyalready, it just chills theblood, I couldn’t do it,I’d go mad.

“I do take them apart and put them together again meticulously after I’ve written them. I think that’s the rightwaytodoit.”

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 ofthesecondbook.”

Philip Pullman’s La Belle Sauvage is available to listen to on TB24390. To listen to more interviews and conversations about reading, catch Read On, broadcast on RNIB Connect Radio every Friday at 1pm, and repeated Sundays at 2pm and Mondays at 6pm.

RNIB writing competitionThe competition is now closed. Thanks to all of you who entered. Our panel of judges are going through all the entries and we will announce the winners in the summer edition of Connect.

29

Book Lovers' Corner

Voting in secret: 100 years onThis year marks 100 years of some women having the right to vote in national elections in Britain, but sadly it’s still the case that women with sight loss are not always able to vote in secret, or on their own.

An RNIB report about the accessibility of last year’s general election showed 45 per cent of blind and partially sighted people felt the system didn’t allow them to vote without assistance and in secret.

A contributor to the Turned Out report said: “I don’t know if the member of staff placed the cross in the correct box or even if she placed my vote in the ballot box. I didn’t like having to tell a stranger whoIwasvotingfor.”

MP for Battersea, London and Shadow Minister for Disabled People, Marsha de Cordova has nystagmus and is registered blind (read her interview on page 11). She said: “It’s fantastic that we are celebrating the centenary, but obviously for us to be a fully inclusive society we need to ensure thatvotingisaccessible.

“Why can’t we voteelectronically? Or whycan’t we have some sortof electronic device thatsomebody could potentiallyuse? Why can’t we have ourvoting papers in large printor in braille? It’s prettybasic stuff.”

RNIB will be raising the issue of inaccessible voting during Democracy Week in July. Find out more by signing up to the monthly campaign eNews at rnib.org.uk/campaigning.

Turned Out 2017

1

Why the UK voting system must change so blind

and partially sighted voters can be in sole control

of their right to a secret ballot.

Turned Out 2017

30

News

31

Volunteers help signpost to sight loss advice serviceA new pilot has launched in the North of England to help raise the profile of the Sight Loss Adviser service with the help of volunteers.

Sight Loss Advisers (also known as Eye Clinic Liaison Officers or ECLOs) can help people maintain independence while adapting to living with sight loss, but sometimes patients are unaware of theirexistence.

RNIB’s pilot scheme is aiming to change all that by training 18 volunteersacrossthreehospitals in Greater Manchester and West Yorkshire.

As well as helping to signpost patients to the service, volunteers willalsoprovidebasic informationabout RNIB’s other services.

NicolaStanley‑Dickinson,RNIB’sVolunteerCo‑ordinatorandaformer Sight Loss Adviser said the pilot aims to ensure patients are not missed and instead everyone receivedthe emotionalandpracticalsupport they need.

She added: “Patient footfall in some hospital eye clinics exceeds 15,000 inasix‑monthperiod.Itisthereforeabsolutely imperative that RNIB thinksoutsideofthebox.”

Niamh Maguire, volunteer and genetics student at the University of Manchester said: “I have learnt so much about eye conditions in my volunteering role and the support available to people with sight loss, as well as meeting lots of new people.”

RNIB will use the feedback from the volunteer pilot to inform a rollout of the scheme nationally in September of this year.

A date for your diary...Next month, our nationwide event, The Big Connection, will bring together people from across the Connect community.

From 31 May to 2 June, get involved in the events and activities happening in your area. Find out more at rnib.org.uk/bigconnection. 

News

Your Quarterly ConnectThe Weekly Connect is a show on RNIB Connect Radio that features contributions from across the community around the UK. Here are a couple of highlights making the air waves recently from the show.

Local Society: The Beacon Centre for the BlindThe Beacon Centre for the Blind supports up to 3,000 people in the West Midlands every year across two sites in Sedgley and Stourbridge.

It has almost 200 volunteers and 100membersofstaff.HelenBrown, the Beacon Centre’s Communications Development Manager, explains more about the huge variety of services on offer.

“One of our specialisms is technology. We are constantly looking to see where we can use technology to help improve the lives of people with sight loss.

“We also have the UK’s first accredited social enterprise opticians, a hugely successful employment programme and our activity group does things

like climbing, rowing, walking and running. We have a youth club as well,”Helensaid.

Yvonne Walker is a service user at the Beacon Centre. Her optic nerves were destroyed following an operation to treat a brain tumour. “I lost my sight overnight. I’d got two young daughters so I just had to get on with life and the BeaconCentrehelpedmedothat,”Yvonne explained.

“I started off doing craftsand over the years I’ve donewater skiing, climbed thegladiator wall, and done lotsof different things.

“I’ve also had computerlessons, and I’m learning onan iPad at the moment. It hasgiven me the chance to talk tomy children about technologyand now they know what I’mon about and I can understandwhat they’re on about too.”

If you’d like to find out more about the Beacon Centre, visit beaconvision.org.

32

Your Quarterly Connect

The Welsh ConnectionNew to the RNIB Connect Radio schedule is a show dedicated to people in Wales. Every fortnight, The Welsh Connection raises topics that are relevant to people with low or no vision in Wales including health and sports.

During the show, blind and partially sighted people talk to presenter Lynne Morgan, one of RNIB’s Welsh broadcast producers, about their interests, concerns and life in Wales.

Contributors have included Stephen Donovan who has taken up Visually Impaired Tennis and entered his first national competition, Hilary Lester who has recently had to come to terms with the death of her beloved guide dog Yalena and Chloe Clarke, a visually impaired actress who is pushing the boundaries on audio description.

In every programme, blogger Ffion Miles talks about what she’s been up to, whether it’s travelling solo around Australia or attending a fan convention in Inverness.

Lynn explained, “I’m very excited because it is interesting to find out what people in Wales are getting upto.”

You can listen to The Welsh Connection every fortnight on Wednesdays at 6pm and repeated on Saturdays at 4pm. Tune in to RNIB Connect Radio, broadcast on Freeview 730 and online on insightradio.co.uk.

The Weekly Connect on RNIB Connect radio is at 1pm every Monday. You can also find every show podcast via Audioboom, iTunes and all the usual podcast outlets.

33

Your Quarterly Connect

Recipe: Sticky Jamaica ginger cakeIf you enjoy baking and are a fan of ginger and cinnamon flavours, RNIB Connect Radio’s resident chef Ian Gentle has a delicious recipe for Jamaica cake.

Ingredients• 275 millilitres of whole milk

• 115 grams of dark brown or muscovado sugar

• 115 grams of black treacle or molasses

• 115 grams of golden syrup

• 225 grams plain flour, plus three heaped tablespoons of plain flour for later use in the recipe

• 1 and a half teaspoons of baking powder

• 1 teaspoonful of bicarbonate or baking soda

• 1 tablespoonful of ground ginger

• 1 teaspoon of ground cinnamon

• 1 teaspoon of mixed spice

• 115 grams of cubed margarine (the kind wrapped in gold foil rather than in a tub).

Equipment• Two small saucepans

• Talking measuring jug

• Food processor

• Measuring spoons

• Mixing bowl

• Cake tin

Method1. Startbypre‑heatingtheoven

to gas mark four, that’s 180 degrees centigrade, or 375 Fahrenheit.

2. Weigh out 115 grams of sugar and put it into one of the small saucepans. Then add 275 millilitres of milk to the sugar.

3. Warm the milk on a low heat until the sugar has dissolved. It’ll take a couple of minutes. Thensetaside tocool.

4. Then, measure out 115 grams of black treacle or molasses and 115 grams of golden syrup and pour that into the other saucepan and heat it on a low heat until it’s runny. Before it gets hot, take it off the heat and leaveit tocool.

5. Measure out 225 grams of flour and tip into the food processor. 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 margarine. Cut the margarine into cubes and put it into the food processor. Rub the flour and the margarine and the spices altogether until it resembles breadcrumbs.

7. Transfer the breadcrumbs into a mixing bowl, and add the syrup mixture and the milk and sugar. Stir the whole thing together for about one minute.

8. Add an extra three heaped tablespoons of plain flour and mix again for another 30 seconds.

9. Finally, pour the mixture into your cake tin and pop it in the oven for 15 minutes. When it’sdone,takeit outandleaveto cool.

10. To make the cake nice and sticky, turn the cake tin over and tap the base of the tin until the cake comes out. Wrap the cake in cling film and leave it at room temperature overnight or preferably for 24 hours, before you start slicing it.

If you enjoy cooking or baking, share with the Conect team at 0303 1234 555 the recipes you love following. For more recipes and food talk, tune in to the Morning Mix with Jill Barkley on RNIB Connect Radio, on Freeview 730, and online on insightradio.co.uk, weekdays from 10am to 1pm.

35

Food Fanatics

Information Directory

Contact the RNIB Connect teamCall 0303 1234 555

Email connect@rnib.org.uk

Write to Connect magazine, RNIB, 105 Judd Street, London WC1H 9NE

Want more Connect stories? Sign uptotheConnecteNewsatrnib.org.uk/connect.

The Connect team can update the format in which you receive Connect. You can choose from large print,braille,audioCD,USBor byemail. They can also help if you have a story to share.

Listen to RNIB Connect Radio 24 hours a day, seven days a week on Freeview 730 and online on insightradio.co.uk. Or download and listen to podcasts via Audioboom, iTunes or your regular podcast app.

Sign up to RNIB’s monthly campaigning eNews at rnib.org.uk/campaigning.

RNIB HelplineCall 0303 123 9999

Email helpline@rnib.org.uk

Visit rnib.org.uk/ask

The Helpline is your one stop shop for help and advice. You can use it to access the range of services we offer, including:• eye health information

• emotional support

• benefits advice

• product information

• fundraising, volunteering and campaigning

• RNIB Library, including Talking Books, Overdrive, RNIB Newsagent and telephone groups.

The Helpline is open Monday to Friday, 8am to 8pm and Saturday 9am to 1pm. Calls cost no more than a standard rate call to a 01 or 02 number.

RNIB Infoline

Call 0203 432 1488 to hear useful recorded information and listen to our most popular publications, including Connect magazine,overthe phone.

RM

BM

_18

01

29