RNIB Connect
February/March 2016
Issue 1
Welcome
Welcome to your new community and magazine. In this edition, we hear about the exciting plans so far and all the ways that you can have a say and get involved. Why not go along to an event near you soon? Or perhaps think about becoming a Community Connector to lead on organising events and activities in your area?
Author Chris Cleave, who is a judge on the panel for our annual writing competition, reveals how he researches and writes his novels. Plus Chris outlines what he’ll be looking for in the winning entries.
Many of you were involved in the My Voice research – the most comprehensive survey of blind and partially sighted people for over 10 years. Transport, emotional support and income are still high on the list – find out more on in the full article [heading ‘Your voice’].
And on a personal note, I’d like to say thank you for all your inspiring contributions, conversations and letters over the years, as I’m leaving RNIB. I wish you all the very best with your new community and hope you’ll take the opportunity to get involved, share your ideas and meet and support other members.
Clare Conley, Managing Editor
Your voice
Your community
Over the last year, we heard from members of RNIB, campaigners and Action Connect members about shaping the future of our new community, RNIB Connect.
Interview with Ellie Southwood, RNIB Group Vice Chair
RNIB Group Vice Chair, Ellie Southwood led on the development of the new community. She spoke to us about what the new community means to her.
Why is this new community so important to you?
I was born with the condition called Leber’s Congenital Amaurosis. Throughout my education, university and career I have relied on having information about the things that can help me - technology, changes in the law and legislation. I know how important it is to know what’s out there. People can’t make decisions and choices if they don’t know what’s available to them.
In a nutshell, what is the community all about?
At the moment we have three separate communities: RNIB Membership, the volunteer campaign network and Action Connect. All of those have very distinct characteristics. The main purpose is to bring them together and to remove barriers for people who want to engage and get involved in lots of different ways.
The second reason is to try to help people connect with each other. To not always be RNIB knowing all the answers, but to be a place where people can be put in touch with others, perhaps in a similar circumstance, or find out about local events and opportunities.
We also spoke to three people who have already been involved in different parts of the community.
Interview with Hussein Patwa, RNIB Member Representative in Scotland
Hussein Patwa, an RNIB Member Representative in Scotland, explained the benefits of members having a say in what they want to happen locally and in linking up with other organisations.
If a group of people wanted to arrange a coffee morning, a sailing event or to form a local walking group, this would give them the opportunity to do that - knowing they’ve got something in common and that they’re not alone in facing any challenges they may encounter.
The one component missing when you have national organisations is the local knowledge. One of the benefits I see of the new community is linking together local societies with RNIB.
Interview with Steph Cutler, Action for Blind People TrusteeSteph Cutler, a motivational speaker, life coach and Action for Blind People Trustee goes on to explain why peer support is so important.
I think there’s huge untapped potential in the use of blind and partially sighted role models. Particularly upon diagnosis, when you just don’t know what’s out there or what you’re able to do. That was a time when I definitely benefitted from reading about, hearing about and meeting other people with sight loss.
I find technology is a real help. And yet I’m not a techno whizz. So the community may be a way of connecting with people more up to date on the latest assistive technology. I think the community represents a refreshing way for blind and partially sighted people to connect, both online and in person.
Interview with Padma Cheryan, volunteer campaign co-ordinator for RNIB
Finally Padma Cheryan, a volunteer campaign co-ordinator for RNIB spoke to us about the benefits of a larger community.
As a campaigner, I’m terribly excited. The larger the network, the greater the support I have, the greater the chance of success for my campaigns. We’re hoping to reach the grass roots level, the minorities who have not been reached before. For example, black and minority ethnic groups and elderly people who, having lost sight late in life, are isolated.
We’d love to see more people getting involved. This is a fantastic opportunity to build networks to feel part of a much stronger, more vibrant community.
Something that comes over strongly is people having more of a say in what they want locally. How exactly can people do that?
The community will work through regional teams, supported by RNIB staff. Some positions will be elected, and some roles will be based on their expertise, for example in campaigning or linking with local societies. It’s the experience, expertise and time people give that is valuable. From now on there won’t be any subscription for joining - although the opportunity to donate will still be there.
There will also be the chance to vote directly for a proportion of RNIB trustees. One of the fundamental pillars of this community is that it is led by blind and partially sighted people so that ability, to directly elect a proportion of the trustees is fundamental too.
This is about RNIB bringing people together so if people want to get involved, to shape what happens locally and nationally, the community is the route for them to do that.
Get involved
You can share ideas, join events or contribute your time and expertise. To find out more about the new community, why not come along to a local event? See heading ‘Service directory’ for more details.
Volunteer
Are you a people person, networker and excited about making things possible for other blind and partially sighted people? You can give a little time and make a big difference, by applying to be a Community Network Volunteer.
To join with other volunteers and grow a thriving community in your area, visit rnib.org.uk/volunteering or call the Volunteering team on 0845 60 30 575 to apply (Calls cost 3p per minute plus your phone company's access charge).
Editorial panel
We’re also forming an editorial panel to enable you to influence and create interesting and enjoyable communications.
If you’re interested in sharing news or ideas or in creating and editing content, please email or leave a message on 0845 330 4134 and we’ll call you back.
RNIB news
Iceland Trek - Ways to fundraise
There are lots of ways you can help raise funds to support our vital work this year.
If you like a challenge, our upcoming Iceland trek could be for you.
Taking place 6-10 October, discover the stunning scenery of Iceland as you trek through geothermal valleys, beautiful mountains, streams and waterfalls.
If a trek is not your thing, there are ways you can fundraise from your armchair! Did you know recycling used postage stamps, printer ink cartridges and old clothes or playing the RNIB lottery or raffle can all help?
Register or find out more
To register for the trek, visit rnib.org.uk/iceland-trek.
For more ways to fundraise, visit rnib.org.uk/donate or call the fundraising team on 0845 345 0054 (Calls cost 3p per minute plus your phone company's access charge).
Two UK entrants win braille essay competition
Two UK entrants won some of the top accolades in the European section of the recent Onkyo World Braille Essay Contest.
16 year old Lewis Shaw from Scotland won the junior prize and Lyn Street from South Wales won the senior prize - both received $1,000. They were among the five best entries chosen by RNIB to represent the UK for the annual essay competition about braille.
How to enter
To read last year’s inspirational winning pieces and find out how to enter the competition in 2016, visit rnib.org.uk/essay or call Mandy White on 01829 261 853.
Letters – Star letter
Driving experience
When I was a small boy my father got his first car. I used to sit beside him in the front. He would let me move the gear levers, and I thought: “This is great! Wouldn’t it be wonderful to sit behind the wheel…but I’ll never do it.”
And I never did. I didn’t let it get me down, and I wasn’t miserable, but it came into my mind every now and then.
Well, it actually happened a year or two ago. By this time my wife had died and I had no car. I happened to mention to a visiting Leonard Cheshire carer about wanting to drive, and he picked it up and spoke to a local instructor.
There’s an old air strip near where I live, which was used for sea planes during the war. It’s now used by young drivers to practice.
After thinking about it for 80 years, there I was - behind the wheel, with my foot on the accelerator, reaching a speed of 30 miles per hour.
To a driver that doesn’t sound like anything at all, but to me… I was bursting with enthusiasm. It’s a wonder that we didn’t go head on into the loch just beside us!
So if a thing looks impossible, just keep it in the back of your mind. Sooner or later, things will fall into place and it will happen.
John Cramond, Stranraer
Star letter prize
For his star letter prize, John wins a £50 voucher to spend in the RNIB shop.
Driving experiences
If you’d like to give this a go, there are lots of places that offer driving experiences for people with sight loss.
These include I Can Experiences - visit icanexperiences.co.uk or call 01869 322 000 – and Speed of Sight – visit speedofsight.org or call 0161 714 4567 to find out more.
Letters
Get active this spring
London Sports Club for the Blind is an old sports and social club for visually impaired people. Founded in 1930, we promote and organise recreational and social activities for blind and partially sighted people.
We offer a number of sports, including ten pin bowling, swimming, activity holidays, rowing and other social activities.
We have weekly swimming classes, weekly rowing in Hyde Park between March and October, and once a month we have a bowling night out followed by a meal.
Our annual activity holiday is the most popular amongst members. A group of us get together and go away somewhere in the UK; anywhere from the Lake District, to Devon or Wales.
The main purpose is to get away as a group and do activities we wouldn’t normally be able to do, like horse-riding, water skiing, kayaking and canoeing.
In the Spring/Summer months we normally arrange country walks. We meet up with a sighted rambling group, and they provide individual guides for each member to walk with. We go for a nice long walk in the countryside and usually finish up with a pub lunch.
Club activities are subsidised to 50 per cent, and our other funding comes from fundraising and club membership fees. It’s a brilliant club, we’re all very active members and we have a great time.
Russell Bailey, London
Get in touch
If you’d like to get involved with London Sports Club for the Blind, visit londonsportsclubfortheblind.org.uk or call 0203 372 5924.
If you’re outside of London, British Blind Sport offers activities across the UK. Visit britishblindsport.org.uk or call 01926 424247.
Finding your feet
I trained a few years ago on a Finding Your Feet course. Through positive role models, these sessions show those who have been newly diagnosed that there is life after sight loss.
It’s taken me a couple of years to get the first one off the ground in Essex. But it was such a positive outcome that the people from the sensory team at the local county council want to continue it.
It does so much more than an hour or so with a sight loss adviser. It deals with the emotional stress and gives you information about where to go next. This gives people hope that they can come out the other side.
For example, I saw at least two of the three people on the course coming in very low and depressed, and coming out the other side engaging with all of the team that I’d brought together.
By using positive role models they can see that it is possible for people to carry on as normal. With just a few adjustments, they can do almost the same as everybody else.
Phil Lee, Essex
Find a local course
Finding Your Feet courses run across England. There are similar confidence building and information sharing courses in Wales, Scotland and Northern Ireland.
Search on rnib.org.uk or call the Helpline on 0303 123 9999 to find out more.
My Voice research
My Voice research
RNIB have recently published My Voice, the largest ever survey of its kind. The report provides a much needed update on the realities of life as a blind or partially sighted person in the UK today.
Clare Conley, Managing Editor spoke to Rose Edwards, Research Officer at RNIB who co-wrote the report.
What was the most important issue for blind and partially sighted people you spoke to?
When we asked people what makes the biggest difference in their everyday life, travel, transport and mobility were by far the most frequent answers.
We found that 40 per cent of registered blind and partially sighted people weren’t able to make every journey they wanted or needed to.
Considering the impact this must have on other areas of their lives – on employment, the ability to go out and socialise or even to access healthcare - this is a very disappointing finding.
Are there any other issues affecting mobility?
As well as the difficulty of travelling, even walking down the street was a huge issue for too many people.
Two-thirds of working age people and a third of pension age people had collided with an obstacle on the pavement in the last three months alone. One in three of these incidents led to injury.
Is access to information still a key issue?
Absolutely. A huge majority - 9 out of 10 people - told us that information on medication or food packaging was difficult or even impossible to read.
A large amount of important financial and medical information is also not being provided in accessible formats. 40 per cent of those surveyed said that information from health providers was never accessible, while 28 per cent said they could never access information from banks.
Are many people relying on a sighted person to read for them?
Yes, nearly half of blind and partially sighted people said that they always or frequently needed support to read written information. This is clearly a problem, both in terms of privacy and people’s right to live as independently as possible.
What about emotional support?
This can come from a variety of sources, including sight loss advisers, or any other type of emotional support, advice or counselling.
Sadly, the majority of people said they didn’t receive any emotional support in relation to their sight loss. Only 17 per cent of registered blind and partially sighted people received any emotional support at all.
How are blind and partially sighted people coping financially?
We found that 1 in 5 people surveyed said they had some or great difficulty in making ends meet. This was more pronounced for those of working age, as sight loss often disrupts their job.
How many people with sight loss are in work?
27 per cent of people with sight loss of working age are in either paid employment or self-employment. Unfortunately this is a decrease from ten years ago, when the last study of this kind was carried out.
How are people coping with benefits?
More than a quarter of the people we spoke to, of all ages, said that their disability benefits were barely or never enough to meet the extra costs as a result of their sight loss. Examples of these costs include specialist adaptations or gadgets, or reliance on taxis.
Were there any other interesting findings?
Other than transport, the biggest issue raised was public awareness and attitudes, which we found are really poor. More than a third of people said they had experienced negative attitudes from the general public.
Technology was also a key area. Less than 1 in 3 people felt they could take advantage of new technology, particularly older people. Overall lots of people said that they don’t feel like they’re making the most of technology available to them now, but they would be keen to if barriers were removed.