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

September 5, 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.

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.”

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.

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