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“I live with macular degeneration, and train doctors for the next generation”

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Area:
Wales
Programme:
Bright New Futures
Release date:
28 9 2017

Being a teenager isn’t easy for anybody, but Mared Jarman from Cardiff was entering hers barely being able to see.

But today she’s one of four young people involved with UCAN Productions that are training the next generation of doctors in Wales.

RNIB and Specsavers recently reported that 250 people in the UK a day start to lose their sight, 1 in 5 will live with sight loss in their lifetime, and 31% of 18-24 year olds do not have their eyes tested every two years. [Read the full report]

Starting out from founders Bernie and Jane Latham’s kitchen, UCAN was established in 2005 running drama workshops in partnership with RNIB Cymru at the Sherman Theatre Cardiff. Since then they’ve gone from strength to strength; delivering workshops across Wales and into Europe, and launching the UCAN Go app which supports visually-impaired people to confidently navigate a growing number of theatres.

Today they’re based in Cardiff University’s School of Optometry and Visual Sciences where members are delivering confidence-building theatre workshops to visually impaired young people on the Big Lottery Fund-funded Future Insight project, and thanks to Cardiff University, teaching 300 of the next generation of junior doctors about living with a visual-impairment each year.

Mared Jarman is 22, from Cardiff, and was diagnosed with Stargardt’s disease at age 10. The following year she was told about the up-and-coming UCAN drama workshops, and became one of the founding members.

“I was thrown into this creative environment which I love, and I was told that I can do things and be creative and enjoy what I’m doing, and I grew with my visual impairment in a safe and proactive place. So no matter what my other challenges in school or at home were with my sight-loss I was with other people going through similar things who were all proving that being visual impaired was not a barrier to anything.

“I always say that Stargardt’s is a juvenile form of macular degeneration and it affects the macular and the retina, which affects the back of your eye, so over the years it affects your central vision. My peripheral vision is quite clear but in the middle, over time, I’ve developed what I call a storm cloud, no light gets through, it’s a very patchy, dark, storm cloud, and surrounding it are smaller clouds, a little bit like Dalmatian print. Now that follows me wherever I look, if I try and focus on something I wouldn’t be able to, I don’t have the ability to focus or look in fine detail any more.

“The way we deliver and create training is quite unique to the circumstances and to the group and it is based a lot on workshops. It has quite an effect because physicalising something can have a bigger impact than just talking about it.

“With some students here, it’s the first time they meet someone with a visual impairment, and usually they’re elderly people, so their perception of sight-loss is from older people. So when we come in and say “we’re visually impaired, this is also what the kind of people that you might be meeting”, it opens a new possibility to them. My story started with me going to an optician and going for an emergency referral into a hospital and maybe they don’t realise at the beginning how relevant all of that is until you meet people face to face. That’s the most important thing that we can offer students; that we give them free license to ask us anything they want and to really challenge us and create that discussion.

“I think without UCAN I could be a very different person, I could have a very different viewpoint of what it’s like to live with sight loss. I have a progressive eye condition, and throughout my teenage years I hit puberty and I obviously lost a lot of vision in a small amount of time, and I think that could’ve been really challenging if I didn’t have that environment around me, and still to this day that’s what keeps me going.”

Ben Richards is 25 from Barry, was born with his visual-impairment and can only see 3 metres for every 60 that fully-sighted people can. He joined UCAN after a chance encounter with Bernie and Jane.

“People have told me what I can see after having eye tests and things like that but the reality to me is that I feel that can see the same as everyone. I used to play football with Vale of Glamorgan football league with fully-sighted people, and they say the same thing to me, they ask “how do you play?” and I’d say, well, “I feel like I see like you”, I just don’t feel any different.

“I was at a teacher’s retirement do and Jane and Bernie spotted me because I was doing a speech for my teacher. Bernie came and asked me if I was interested in doing a part for a play for him and that was two years ago, and since then I’ve not looked back. In the last year I’ve started working with them, I’m registered self-employed and my life is taking shape, and it’s all down to these guys and the National Lottery. It’s really changed my life completely.

“With the junior doctors, we’re just trying to give them the best representation of people with visual impairments so that they can be prepared for what they are going to experience in the workplace. I’ve been mainly working on the physical side of the workshops, and a lot of the students are so shocked at the variety of things that you can be affected by. Simple things like reading tins of beans; it doesn’t really cross their mind that you would need to read the list of ingredients on a tin of beans but that’s really the only way that we can get that proper representation across because people who learn about this kind of stuff from a full-sighted teacher aren’t going to get that kind of stuff across so well.

“The Future Insight program really helped me start onto employment, I’d never really started on things like film-making before. It’s opened so many doors for me, and given me so many opportunities, and it’s proved to me that the things I am good at help me structure films better, like researching questions for the script. To have that opportunity to express yourself and feel like I did a good job made me feel really good about myself, it’s been brilliant.

Megan John is 24 from Cardiff and was born with Cataracts, Nystagmus, and Aniridia. She joined UCAN as a founding member and came to realise that performing arts could change her life.

“My parents tried to make me living with a visual impairment as normal as possible and allowed me to try to do things that any other person does. I must’ve been about 13 when I first joined UCAN and for me it came at a great point in my life because drama had never been a massive thing for me and it built my confidence in a very short space of time, and I realised how much I loved it and how beneficial it could be.

“The junior doctor training came from Cardiff University School of Optometry who asked us to come in and talk about the physical and emotional aspects of living with a visual impairment and that’s kind of developed over time. From that then we kind of learned there was a gap in the market for training that involves people with sight-loss talking about their own experience with full-sighted people, and that’s what was missing.

“In UCAN we’re all about a user-led approach, and having the experts talk about what they need and what they know because there’s no point getting someone with a hearing impairment going in and talking about what it’s like to have sight-loss, it’s just as simple as that. I would never want to speak on behalf of anyone else with a disability because I couldn’t possibly imagine what it’s like because I’ve never lived that experience.

“We mainly deliver workshops in Wales but last year we were part of an Erasmus Plus project and we worked internationally; we’ve worked in Sicily, Bulgaria, Italy and Luxembourg, and the culmination of that project was a week-long series of workshops with around 90-100 people from the different countries in three or four languages. It would be running a workshop in English, then Italian, then Bulgarian, and so on, it was an incredible experience.

“I’ve been with UCAN for over 10 years now, and I can’t imagine what my life would be like had I not been a part of it. It came as such a crucial part of my life where I was making some major decisions, that it influenced those decisions. – I don’t know what I would’ve chosen to do, I don’t know what I would’ve wanted to do with my life apart from that. I wouldn’t be the person that I am today, I can say that, I don’t think I’d be as confident as I am.

Jake Sawyers is 22 from Port Talbot and was born completely blind in his left eye and 25% vision in his right eye. “I started with UCAN and built up my confidence when I was 13, and I’d been told that I’d be good at performing arts. My degree was in performing arts. I went to Carmarthen so I basically took my situation and tailor-made it for myself, and I got a First. I’m used to having a visual impairment and that I’ve always grown up with it I always factor it into everything that I do.

“I’ve always described being visually-impaired as looking down a camera lens, because I do work with a camera with my working eye. But because I’ve never known any different it’s so difficult to describe. I’ve always asked my brother how he sees because I don’t physically understand how two eyes can meet up together to make one image – that’s something that really confuses me. It’s a two-way system.

“There was always that huge potential that things could’ve been a lot different. I think if I wasn’t supported by my family or UCAN, I think things would’ve turned out a lot differently. Me, being a performer, would find it hard to get work anyway, but being a visually-impaired performer – if you’re not supported with that ambition it’s going to be a lot harder to achieve.

“Film-making and photography is something that I do as a hobby; being asked to do it by UCAN in Future Insight it gives you so much professional development and self-worth it’s like I feel like I’m trusted to do something, and know that I can do it, and I can go to professional people and show people my work but I wouldn’t have been there without the Future Insight project, RNIB and everyone at UCAN.

UCAN Productions in Cardiff are in partnership with the Royal National Institute for the Blind Cymru who received a Big Lottery Fund grant of £999,450 for their Future InSight project which supports blind and partially-sighted young people to become able and independent individuals with the skills and confidence to make a smooth and successful transition into adulthood.

Further Information:

Alexander Davies - Big Lottery Fund Press Office: 029 2067 8236
Public Enquiries Line: 0300 123 0735                           Text Relay: 18001+0300 123 0735
Full details of the Big Lottery Fund programmes and grant awards are available at: www.biglotteryfund.org.uk
Follow Big Lottery Fund Wales on Twitter: www.twitter.com/biglotterywales
Find Big Lottery Fund Wales on Facebook: www.facebook.com/biglotteryfundwales

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