Outlook Issue 35

February 2018

Contents

Intro

NewsFind out what’s going on at RNIB in this issue’s round up.

Queen of the MountainWe met with Marvel Opara, who took on the challenge of a life time and trekked to the summit of Mount Kilimanjaro to raise awareness of RNIB.

Will-writing made easierMr Sadler talks about his experience of writing a Will and the help he received from RNIB.

A family’s love lives on Roger Molineux shares his poem Harp Queen, and talks about his connection to sight loss.

Fundraising Find out how you can help raise funds through In The Dark and Dots Raise Lots.

Welcome to your latest edition of Outlook

I hope you enjoy this brand new bumper edition of Outlook. In this issue we speak to Marvel Opara, who took fundraising to a new extreme by climbing Mount Kilimanjaro, and feature a wonderful poem by Roger Molineux who we met last year at our Macclesfield supporter reception.

We have the usual mix of news and updates from RNIB, including our work with Specsavers and The Bank of England, and we interviewed Keith and Marion Sadler, who, with the help of RNIB, planned their future by using our Will-writing service featured in the previous edition.

Last, but by no means least, I’d like to thank you for supporting us and helping transform the lives of blind and partially sighted people. I really hope you enjoy the magazine.

All the very best,

Matt Smith – Editor.

News

A very big thank youOver 700 of you answered our request to share your recent experiences of travel and transport for our consultation response to the Department for Transport’s draft Accessibility Action Plan.

Whether you attended a workshop or took part in our survey, your contribution will help ensure that the Government really sits up and listens to our recommendations.

Our response is packed full of your insights, but some of the areas you told us you wanted to see change included:

The loss of standard height kerbs and controlled crossings as a result of public space re-developments.

Improving the accessibility of trains and stations, including the reliability of audio announcements and access to so-called ‘accessible’ toilets.

Making sure ticket offices are adequately manned and that ticket machines are made accessible.

Disability awareness and equality training for all transport staff, regardless of the mode of transport.

The Action Plan covers a range of transport modes including aviation, rail, buses and taxis and also considers ways to improve public spaces to make them more accessible

Remember a Charity in your Will WeekEvery year more and more people like to leave a gift to charity in their Will. Over a third of all our funds come from the generosity of people like you; but it’s a little known fact that gifts in Wills are such a vital source of income.

That’s why we take part in Remember A Charity in your Will Week every September, along with over 190 charities, to

raise the profile of legacy giving and encourage even more people to consider leaving a gift to RNIB in their Will.

During last year’s campaign, Remember A Charity launched Last Pirate FM, a pirate radio station with legendary Radio Caroline DJ Emperor Rosko, in what was Radio Caroline’s 50th year off air. We asked supporters to have their say about the world they want to pass on, prompting discussion about passing on something even more special, a gift to RNIB in their Will, to ensure we can be there for blind and partially sighted people in the future.

The radio station went on a national roadshow, visiting 5 iconic UK cities from the 1960s – London, Bournemouth, Norwich, Liverpool and Edinburgh. During the week, Emperor Rosko and fellow Radio Caroline DJ Tony Prince transmitted interviews and music from guests including Twiggy, Wilko Johnson, Ringo Starr and Mike McCartney and great playlists from the era.

Listen now to Last Pirate FM at mixcloud.com/ lastpirate or continue the conversation at rememberacharity.org.uk

A very special ad breakLast summer, RNIB partnered with Channel 4 to produce a very special ad break. Channel 4 is committed to diversity and improving accessibility for all its viewers and listeners. Working closely with ourselves, different visual filters were applied across television adverts for O2, Paco Rabanne (PUIG), Amazon Echo Dot, Freeview and Specsavers to illustrate the five most common eye conditions in the UK: macular degeneration, cataracts, eye conditions caused by diabetes, hemianopia and glaucoma.

As well as demonstrating how people with eye conditions are affected, the ad break also aimed to encourage advertisers to insist on making adverts as accessible as possible.

This unique campaign was broadcast during Channel 4’s The Undateables on Monday 18th September 2017, to

coincide with National Eye Health Week, and then repeated with audio description in the following ad break.

We had an overwhelming positive response from the ad break takeover and the video was shared across social media reaching 1.5 million likes on Channel 4’s Facebook page.

National Eye Health Week

Specsavers’ eyepod tour In September, to mark National Eye Health Week, RNIB and Specsavers worked in partnership to encourage people in the UK to look after their eyes by having regular eye tests.

Throughout September we visited 11 cities with an Eye Pod, a mobile sight simulator that allows shoppers to experience what it’s like to have one of the four most common causes of sight loss in the UK – glaucoma, cataracts, diabetic eye disease and age-related macular degeneration.

The Eye Pod uses a periscope to allow visitors to see the outside world and electronic screens to simulate each eye condition, with RNIB and Specsavers staff answering any eye health questions and providing information about sight tests. The State of the Nation RNIB and Specsavers also joined forces to transform eye health in the UK. One year on, The State of the Nation Eye Health 2017: A Year in Review presented key achievements of our partnership to date, along with new information on sight loss and attitudes towards eye health. Some key findings from the report include:

Every day 250 people start to lose their sight in the UK. 1 in 5 people will live with sight loss in their lifetime. Almost a quarter of people are ignoring the first signs

of sight loss; despite not being able to see as well in the distance or close up as they used to. 23% have not sought advice from an optician or medical professional.

78% of people said that sight was the sense they fear losing the most.

Research suggests that Brits check their teeth more often than their eyes; 42% visit the dentist once every 6 months, while 25% of UK adults haven’t had an eye test in the past 2 years or at all!

Queen of the Mountain Last October, Marvel Opara took on the challenge of a lifetime and spent seven days climbing to the summit of Mount Kilimanjaro. Marvel has limited vision and a condition called optic atrophy.

“I was about 4 or 5 when I had my accident. I fell and banged my head, my brain started to swell. I had an emergency life or death operation, my parents had to sign a disclaimer and were told that if I survived I would have limited or no vision.

I have seven per cent vison in my right eye and no vision in my left and have an eye condition called optic atrophy, which means that the messages from the eye to the brain don’t function properly due to nerve damage.I remember being in hospital and all my relatives visiting me because they thought I was going to die, but I was determined to stay here and cause trouble. Everything was strange when I came out of hospital, I didn’t speak for a year and became mute.

My only memories of sight were being in school with P and Q on the blackboard and being confused. I also remember seeing two horses and asking why one was upside down – it was explained to me that it was just one horse and the other one was the reflection.

Education I went to a visually-impaired school, which taught us to use the sight we had, and I have a big family and we were all treated the same so I was made to get on with things.

I like physical pursuits. In school I would always run and used to cycle and ride around the track at Herne Hill. I didn’t

get back into athletics until I was in my late 20s and I started metro sports and racing against teenagers and cross country skiing, which I adored.

Preparing for the challenge In preparation for Kilimanjaro I went to The Altitude Centre, which was quite sensible. On a mountain you carry three and a half litres of water and a day pack. A lot of the prep is mind over matter. It’s about psyching yourself up mentally, putting one foot in front of the other and enjoying it!

I went to Richmond Park, did Nordic walking and took spinning classes which are good for stamina. I also bought a weighted vest, which I wore around the house. I also did hula hooping which is a great workout for abs.

Climbing Mount Kilimanjaro The first day we went through the forest, it was about three hours of walking where we saw chameleons, dogs and lots of children who sang to us. The weather was still hot but by the third day it started getting cold and it was really cold at night, I put my hand warmers in my socks.

There were 13 of us, a guide, Meg the medic and porters who carried the luggage and did all the cooking. The oldest was 61 and the youngest was 25, unfortunately she had to go down because of altitude sickness.

A few times I was allowed to lead and set the pace, the first day in the forest I was walking really fast because of my Nordic walking, I was leaving everyone behind. We would wake up and have a work out, and at night everyone would sing songs. I was going to bed at 7.30pm every night, I needed to rest my body!

A friend, who had previously done the trek lent me a warm down jacket and sleeping bag. I was told that batteries freeze nearer the top of the mountain and to keep them at the bottom of my sleeping bag – which I completely forgot about – which was great tip.

When we first got to camp, my friend had told me the toilet was a little wooden hut hanging over a cliff, which is the

image I had in my head! When the camp leader presented this chemical toilet I was quite relieved! It was all very civilised, it was in a zipped cubical, with a separate one for women. I had my lavender oil with me which I splashed about a bit so the ladies’ toilets definitely smelt better than the mens’!

Lots of people suffer from headaches so a dab of lavender oil behind the ears helped, and eucalyptus oil for when people had blocked noses. I made sure I had my magnesia oil to rub into my muscles to prevent them getting sore.

The food and cooks were amazing. Whenever we got back to camp there was hot chocolate and homemade popcorn. We had omelettes, pancakes, porridge and toast for breakfast. Dinner was pasta, rice, chicken and beef - everything was amazing. There was endless soup, but by the end of the trek I was sick of that!

The hardest bit was the second day - rocks upon rocks. My guide would say “stone” every time and I was constantly lifting my legs. My body soon became acclimatized to that environment though; volcanic mountain ash was everywhere so you always felt like your hands were dry. Even in the campsite there were stones and rocks so I would use my trekking poles to make sure there was nothing in the way.

Reaching the summit When we got to the summit I planned on screaming for joy but I couldn’t do anything- I was just too exhausted!The last 40 minutes were so hard, and when I got there it was like Piccadilly Circus, there were all these people everywhere.

“Everything had slowed down because my body was so exhausted.”

I sat down and got my phone out to take pictures and my battery died! Luckily someone else had a camera so I managed to get a few photos. I had brought RNIB balloons to blow up but I couldn’t, because of the altitude I would

have passed out. Luckily my guide did it for me, because he knew I wouldn’t back down. At that point I became animated, I became alive, it was like my brain kicked in and I thought “oh yeah I’m doing this for a cause”. At that point I was on top of the world - the whole thing was out of this world.

Coming home When I got back to London it took me a few weeks to get back to reality. It felt like I had been in this bubble and dream state. I can’t believe I’ve been there, I had fundraised and I made it to the summit and back and I ended up raising £4,700.

I chose to fundraise for RNIB because it’s important to educate people about sight loss. People lose their sight every day. I’m lucky – I lost my sight at a young age, I think it must be much harder if you lose your sight as a teenager or an adult.

My advice If I had any advice for someone who is going through sight loss it would be to take one day at a time, it’s a bit like being up that mountain. Just take one step and one day at a time because every step, every day is going to be a different challenge. I have always prayed that I’ll get from A to B OK and then give thanks when I do”.

Did you know?Approximately 25,000 people attempt to summit Mount Kilimanjaro annually and approximately two-thirds are successful. Altitude-related problems is the most common reason climbers turn back.

The oldest person ever to summit Mount Kilimanjaro was 87 year old Frenchman, Valtee Daniel.

Mount Kilimanjaro is the tallest mountain on the African continent and the highest free-standing mountain in the world.

If you would like to take part in one of RNIB’s challenge events or would like more information, please contact events@rnib.org.uk or call 0345 345 0054.

Will-writing made easier

Outlook interviewed Keith and Marion Sadler, who, with the support of one of our Wills and Legacies Officers, were able to put their affairs in order and gain peace of mind by rewriting their Will. They also included a gift to RNIB, helping to ensure that people with sight loss in the future will reach their full potential.“I didn’t have any inkling of a problem until I went to an optician to get contact lenses when I was finishing college.

He said, “I would like you to go and get your eyes looked at the hospital”, where a specialist told me I would be registered partially sighted, and my central vision would be obscured.

He told me it was a condition that can move slowly and people can have it for years and years or it can move very fast and people can go blind fairly quickly.

When my driving licence was taken away, that really affected me because I specialised in geological visits and was unable to go without a licence.

Someone mentioned I should speak to the RNIB, so I found the phone number and they offered me suggestions on employment – they suggested computer work, because you sit in one place and mobility can be a problem with peripheral vision.

I went on an RNIB course and got into computer programming in the mid-1980s. I then got a job with a local company in Ipswich, working there for 4 years, then worked with Norfolk County Council.

I have had Talking Books, they were very good, but I just found I wouldn’t get anything done because I would just sit there all day and listen to the book.

Planning for the future We received an invitation to an event about Wills, so we went along and it was very interesting. We already had Wills because we have a financial adviser who had previously helped us and he had said the

minimum things you need to do are have life insurance in case anything happens to you then the other one would be OK financially, and also a Will. So we got the life insurance and we went off to a local solicitor and got a Will. It went through several amendments and started off really complicated but got simpler and simpler.We received some help from RNIB. We spoke with John Stanworth, who had spoken at the meeting and he had a form, which was a great checklist of things you need to think about and consider. It really simplified the process, it was practical and made sense. We didn’t do anything immediately but a bit later.

They say every 5 years to look at your Will and change it if you need to. We called John and asked if he would visit, and he talked about the process of making a Will and it was very good. The form he had made it really easy to lay out what you want to put in the Will. We went down to specific legacies and then another level of what to do with the money left over.

It was such a good way of thinking about it. The first solicitor had said, “Go write your Will and we will do it”, it was trial and error for years. RNIB’s form and talking through it made it really clear about the different stages you go through when making the Will. We felt confident about going to a solicitor and explaining to him what we want. There are things you legally have to have in the Will and there are certain things that you can do in your Will that can cause a problem and we don’t want to cause any problem with the legacies we leave - we want to be remembered fondly!

I wanted to be sure that each of us would be OK financially and to have that reassurance. We have heard that when people die without a Will it can be a very complicated process and very time-consuming. We went into the solicitor with the form we had filled in, he looked it over and typed up our Will within a week and sent us a draft. We made a few small corrections and he sent it back and it was all good and then we went to the signing of the Will in the office. We sat at a big official table; he read the Will out to me which was very kind – because previously that had always been a problem!

I would say that a Will is essential, especially if you have a family or getting older, or a mortgage, and to contact RNIB.

RNIB can make it much easier for you to write or update your Will for free or at a low cost, in a way that’s convenient to you. To find out more please call us on 0207 391 2078 or visit rnib.org.uk/legacy

A family’s love lives on We met Roger Molineux at our Macclesfield supporter event in September last year, where he talked about his connection with RNIB and why he supports us. Roger is a keen writer and often writes for his own amusement and for his local community.

“My father sadly lost his sight in his fifties, due to diabetes. At the time, I was a teenager, so felt the effect considerably.

Countering that, was how well he adjusted his lifestyle, ably supported by my mother, and to a much lesser extent by my brother and myself.

He remained very practical and independent, and most of all, extremely cheerful for his 71 years until he died in 1977.

Talking Books were much enjoyed, and I’ve still got his first reel to reel player which weighs a ton, like the old TV sets.

Before his sight loss, he would write short stories and read poetry. I remember Sundays spent where my parents would recite their favourite verse, often from memory.

This was fertile ground for me. I write articles for my local church community magazine, and for my own enjoyment of course.

A few years ago, I did some readings for Macclesfield Talking Newspaper, which is produced every week and distributed on CDs and memory sticks.

One reason for writing ‘Harp Queen’ was my father played the harp, and he is mentioned in it.

After writing this, I remembered he wrote a short story titled: The Haunted Harp, which has a supernatural element and romantic theme.

Rather strangely, without thinking of this, mine reflected an air of mystery and potential for romance!

So, in a sense, part of my father still lives on.”

Harp Queen by Roger Molineux

Taking my harp to the party, was to impress the other guests,

Especially those lady ones, for whom I’d do requests.

But, their attention seemed elsewhere, with shrieks and endless chatter.

So, I dumped it in a corner, as if it didn’t matter.

While going to the bar, a blind lady caught my arm.

Tapping her white cane, she extolled a certain charm.

“Someone has brought a harp”, is what she had heard say.

I replied “That’s me, but it’s too noisy here to play”.

“Would you show me to it, as I had one years ago”.

There, stroking the varnished casing, her face was all aglow.

I recounted its known history, of being lovingly restored,

How my father helped to pay for it, when I struggled to afford.

With eager hands embracing, she caressed and plucked the strings.

Releasing an enchanted melody, which stirred and then grew wings.

Wafting through the throng with slowly gathered pace,

This calmed indulgent banter, and quietly took its place.

More and more came her notes from a blur of tireless hands,

Other sounds subsided, hushed by my harp so grand.

A ‘stallion’ it was perhaps, that this lady proudly rode.

Somehow, both had merged as one, and magnificently they strode.

The party guests were spellbound as they stood around enthralled.

Then, all the lights went out: ‘A power cut’, was called.

Yet, no pause did break from music, from one without need of light.

The darkness only added to the magic of the night.

How long we remained there listening, is hard for me to say,

Save, when the room was lit again, my ‘Queen’ had slipped away.*

So, now my harp is still once more, awaiting her return.

Who she was and where she went , I’ve tried my best to learn.

Not only were there harp strings pulled, is surely what I mean.

Oh! How her ‘stallion’ longs again, to go riding with his Queen.

* Post script: The house party’s family silver did not disappear with her.

If you would like us to pass on your thoughts on this poem to Roger or would like to see more poetry in Outlook, contact us on 0345 345 0054 or email legacyservices@rnib.org.uk

RNIB Fundraising

In the DarkThroughout November RNIB encouraged supporters to awaken and focus on other senses through a fun activity without the use of sight.

We had an amazing response with over 700 registrations. Supporters held dining and wine tasting, speed dating and even yoga lessons blindfolded and in the dark.

In The Dark events not only raise funds to make every day better for those living with sight loss but also help raise awareness of living with limited vision.

This year, why not hold one yourself? You can be as creative as you want – could you manage a whole day in the dark?

Dots Raise LotsIn May we will be asking you to highlight the importance of braille and fundraise by doing something dotty! This could be having a dotty bake sale, wearing or making dotty clothes or even having a dotty games tournament with dominoes, draughts or Connect 4.

We would love to see this get bigger and better than last year, so please encourage your friends, local groups, colleagues and schools.

For a free fundraising activity pack go to www.rnib.org.uk/dots, email fundraising@rnib.org.uk or call 0345 345 0054 Monday to Friday 9am to 5pm.

Thank you for reading this edition of Outlook; we hope you've enjoyed it. If you don't want to receive any more issues please contact our Fundraising Enquiries team and we'll take you off the list. The telephone number to use is 0345 345 0054.