Emily Shifflet creates art with her eyes—literally.
She has Rett Syndrome, which prevents her from any useful movement of her body, except for her eye muscles.
According to the website Reverserett.org, “Rett Syndrome is like autism, cerebral palsy, Parkinson’s, epilepsy and anxiety disorder…all in one little girl.” (Girls are most often afflicted.)
“Add chronic lung disease and major digestive disorders, and you have a body that doesn’t allow her to live her life in this world,” added Jenny Murphy Shifflet, Emily’s mom.
Emily has, however, found a way to live, communicate and contribute greatly through the technology called Tobii Dynavox, which facilitates communication through eye movement. According to Emily’s behavioral consultant, Laura Myers, Dynavox is “like an iPad and computer combined.”
A black bar across the bottom of the device directs beams into Emily’s eyes and reads where they’re moving. With that action, she can choose from options programmed specifically for her—about how she’s feeling, what she wants to do, or activities she wants to interact with.
“The Tobii eye gaze has opened up lots of new opportunities to engage in different ways,” said mother Jenny.
That’s how Emily has emerged as an artist. Myers said that the art program was downloaded to give her a different outlet.
“It went from just something to do, to this is what I like to do, and [then] get the word out about Tobii and Rett Syndrome,” said Myers.
Sitting in her chair, with a blonde braid down her shoulder and sporting hoop earrings, Emily said, through her Tobii, “I like to do art.”
Specifically, she likes to paint, her works then transformed into cards. Jenny decided, in October, to form Eye Gaze Designs by Emily and offer her daughter’s art to the public. She said she created the business for three reasons.
“One, for an opportunity for Emily to create her art,” she said. “Two, for the public to see her ability and not just her disability, and, three, to raise money for research for Rett Syndrome.”
The idea arose when Jenny’s friends began saying of Emily’s art, “Put that on a note card, and I’ll buy them.”
The software allows Emily to choose background, color and a variety of brushes.
Jenny described her daughter’s art as abstract, feeling-based. Emily leans towards bright colors, and she mixes and layers hues. Since her mood influences her art, some pieces are darker, coinciding with less happy spirits. On occasion, the temperamental artist will show up, and she will erase pieces that her family finds exceptional.
Jenny said that art has “helped her self-esteem, given her a purpose.” Emily enjoys being called an artist, which was clear when speaking to her. A subtle, but distinct smile crossed her face when addressed by the label.
“Art has provided a chance to get out and socialize with people who don’t know that this kind of tech is out there, for people who are differently abled,” Myers said.
Emily loves giving cards to people. She smiles and moves her body in excitement. So far, Eye Gaze Designs by Emily has sold about 2,000 cards and offered calendars at Christmastime. Jenny said, with a laugh, that they are calling her present project the “Pandemic Painting Series.”
Kidding aside, the family has been in isolation since the end of February due to COVID-19, which poses a serious threat to Emily’s fragile health. Emily doesn’t like being stuck in the house. What 24-year-old would? Typically she would be at yoga, ice skating, seeing a movie, or attending an event to speak about Rett Syndrome.
For now, she has more time to paint—though using eye muscles in this way proves very tiring, and she can paint for no more than an hour at a time.
Emily’s artistic bent wasn’t evident before she began using the art program, though the spunkiness that shows up in her art has always been a part of her personality. Jenny described her as a “huge flirt and fighter,” a free spirit.
Emily chimed in, “Let’s go four-wheeling.”
Her dad at times carries her on the family’s four-wheel vehicle for rides in their backyard. Apparently, she’s also a joker, and Myers said that Emily likes to take selfies, catching people eating in the background unaware.
Emily had an art exhibit scheduled at the Cocoa Beanery in Hershey for April, but that was cancelled when the café had to close. This is not the first setback for the budding artist, and it certainly won’t be her last challenge. But Jenny said that her daughter is “helping people understand that there is ability within people with a disability.”
She’s using her eyes to help people see it.
To view Emily Shifflet’s art, visit www.eyegazedesignsbyemily.com.