068 Seeing with Stargardt’s

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Eye strain from screens results in headaches

Name: SEEING WITH STARGARDT’S 

Location: BRISTOL

Mission: TO CREATE A VISUAL REPRESENTATION AND SHED LIGHT ON STARGARDT’S DISEASE

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Zoe living life to the full

The Spiralling has created many wonderful opportunities for me to meet people, including the Swap Shop which I have been running every couple of months at a pub called The Chelsea. It was here through a mutual friend that I met Zoe. It wasn’t until we’d randomly bumped into each other a few times that she told me about the condition she has. 

Zoe was born fully sighted but at age ten was diagnosed with Stargardt’s disease. “This resulted in a dramatic loss of vision through my pubescent years resulting with me being legally blind at the age of 13.” Stargardt’s is a genetic, juvenile condition which is extremely rare and incurable. It affects the macula in your retina which are responsible for your colour and central vision. For more information about the disease click here

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Forget knowing when your bus is coming

Being diagnosed with this condition hasn’t stopped Zoe from doing the things she wants to do such as travelling and playing sports. “However, trying to explain my vision and how I do day to day tasks is extremely difficult and infuriating. For over a decade I have been trying to figure out how to explain my vision to others. I’ve been struggling to put adjectives to an intangible thing that nobody but me has experienced. Searching for analogies that could make sense of this mystical blind spot for my friends and family.” 

It’s thanks to a collaborative project with one of Zoe’s artistic friends, Nai, that she has been able to create a tangible representation of her vision. “Thanks to Nai’s patience, curiosity and talent people can see how I see. This has both allowed me to see it in an actualised form, not just in my mind, and provided others the ability to understand how I see and what impacts it has on day to day life.” 

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Nai has helped Zoe visual represent her condition

One of the main barriers the pair had to overcome throughout the project was communication. “As only I could see the blind spot we relied solely on our communication skills to create a depiction of a colour blind person with a blind spot who has astigmatism and is legally blind. Nai had to build the links between verbal description of a completely unknown vision, to a visual depiction of it. This took a lot of discussion and trials to get to the final product. I personally had to become ready to bare all about my vision and allow others to view it.”

Their biggest inspiration for the project was Zoe’s blind spot. “The intricate mandala like patterns of light fascinated Nai, and it allowed her to pursue a different direction to her usual artwork that had more meaning behind it as it is so out of the ordinary. It allowed her to use her skills and talents to help empower others.” 

Nai has found the challenge of working on such an unusual but extremely interesting commission rewarding. “I’ve really enjoyed trying to visually recreate Zoe’s blind spot. I’ve learnt so much and feel truly humbled and inspired by her. It is bizarre creating something that I will probably never see, but have someone intricately describe it to me. I’m glad we have finally got it so close. It’s really helped me understand how her and other people’s visions can be so different from my own and aware of how we can’t always see other people’s obstacles to life.” 

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Visually impaired at a gig

When Zoe posted the artwork on social media she had an incredibly warm response. “Lots of the remarks were just like that ‘oh i get it now’ or ‘well that makes sense now’. I saw so many changes in my social life with people being more aware and knowing what I needed without having to ask. Also sharing it with the Stargardt’s community and having so many of them say that this is how they see, and for us to have a deep connection through sharing. Now we could see how we saw and share it with others. Having families tell me they use it to explain their children’s vision in education or employment was really incredible.”

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Texting is infuriating

Zoe and Nai hope to increase awareness and understanding using their own skills and experiences to inform others. “We want to shed light on invisible disabilities and engage in thought processes that allow for discrepancies in body function and ability. Because everyone’s body works differently and uniquely despite society trying to tell us otherwise.” Usually when you complain about not being able to see the board in class you get glasses, I got Stargardt’s Disease; but I hope that from this people become more aware of invisible disabilities and join the movement to disable ableism in our communities. Everyone has their quirk and we should embrace our uniquity.”

In the future Zoe and Nai hope to release more images and a zine talking about ableism and how to live with a visual impairment. An exhibition of the images which they created is on the cards as well. 

Contact details:

You can contact Zoe through the Facebook group below 

http://www.facebook.com/naibaibee 

https://www.facebook.com/groups/111255265589970/ 

Credit: http://morgainefordworkman.com/portfolio/wp-content/uploads/2011/02/StargardtsDisease_MFW.jpg

 

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