An invisible exhibition
October 6, 2019
Juli was seven years old when she was diagnosed with retinitis pigmentosa, a genetic disorder that gradually leads to loss of vision. For years, she lived a relatively normal life despite the onset of symptoms — loss of peripheral vision, tunnel vision and blurring of sight.
She went to school, got around her hometown, Budapest, took strolls in the park and pursued her passion for drawing and painting. Then, while in university studying religion and training to be an elementary school teacher, her life went virtually dark.
It was a bitter time marked by depression for the then 23-year-old, who had ambitions to teach children and illustrate children's books.
"I lost dreams I couldn't fulfill," Juli said. "When you lose something, you go through steps of denial, anger, bargaining, depression and finally acceptance," she explained, outlining the five stages of grief.
Learning everything again
Her life had been turned upside down and she went to a rehabilitation center for the blind to get help with the adjustment. She had to learn how to do everything anew, from cooking to walking to using special computers and technology for the blind.
Now she keeps her spices in alphabetical order to find them, though she admits to sometimes making mistakes and "getting some interesting recipes." She enjoys listening to audio books and even runs in the park, with her husband leading her with a rope.
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To live blind requires laser-like focus and awareness of surrounding sounds, especially while in the potentially dangerous world outside. Juli describes the most difficult part of being blind as all the "hard brain work" that goes into everything she does.
Indeed, as I was about to learn.
Seeing with other senses
Now 33 years old, Juli is a guide at the Invisible Exhibition in the Hungarian capital. During the interactive experience, visitors learn about the blind and are brought through five pitch-black rooms — an apartment, a noisy street crossing leading to a vegetable stall, a hunting lodge, a forest complete with chirping birds, and a sculpture museum. There is also an option to eat an Italian dinner, served by Juli, in the dark.
At first, the experience comes across as a fun game, but after a while, the excitement vanishes and a somber reality sets in. This is the hard daily life of the estimated 36 million blind people in the world.
I may fumble around a fake apartment and laugh, but the blind need to deal with sharp objects and cooking in everyday life. Someone may not listen to the clicking noise signaling that it is safe to cross the street in a staged environment, but in real life such a mistake can be fatal. And the forest and museum sculptures just aren't the same when one can only touch but not see.
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'Hard brain work'
Eventually, Juli led my wife, me and four others into the dining room. One by one, she kindly guided us to our seats at the table. Drinks and three courses were served: I had tomato soup, a messy spaghetti bolognese and tiramisu.
Normally, I would devour such a meal. But strangely, in the darkest of darks I lost my appetite. Food is not the same when you can't see it and are forced to eat slowly. My soup seemed like an endless bowl, the spaghetti never-ending and the tiramisu tiring to finish.
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After nearly three hours in total darkness, I was mentally exhausted and experienced a strange tiredness and boredom setting in. It's what Juli meant by "hard brain work."
Finally, it was time to leave and see again. Everyone was excited to enter the light, which pierced through our dilated pupils and caused a strange dizziness. Juli gave us a kind smile, standing there in contemplation.
It was a sad sight, knowing Juli didn't have the luxury to experience again what everyone takes for granted.
"My heart is broken for her not being able to escape the dark cage that this life has put her in," my wife later commented. "She can never see herself in the mirror again to know how beautiful she is."
Invisible Exhibitions are open in Budapest, Prague and Warsaw.