Blog by Vera Adamovich, Lilia’s business partner and mom.
I am continually amazed by Lilia’s artistic vision and talent. Her drive to reach her greatest potential in all aspects of life, despite her disability, never ceases to amaze me. She has inspired me to become a tenacious advocate and to apply my consumer packaged goods (CPG) experience and business skills in ways I never imagined. I feel so lucky to have her in my life and to be part of this journey with her. She is my inspiration.
Many have asked exactly how she creates her art and wearables by herself when she cannot independently walk, talk or use her hands. Now and then I catch that glance of “Come on, really?” My answer is “Yeah, REALLY!” Today, I am going to show you how this amazing business partner and daughter of mine does it.
Lilia uses three different speech generating devices with eyegaze/eye tracking technology to make her art. They are Prentke Romich Company’s Accent 1400 with Look Eye Tracking, Tobii Dynavox’s I-12+, and a Windows Surface Pro tablet with a Tobii Dynavox PCEye eye tracker. They each have pros and cons. For example, the resolution of the art created on her Surface Pro is higher and it produces crisper art than possible with the other devices, but it is more difficult to point, click and drag on this device with only one’s eyes. At this point in time, Lilia’s new Accent 1400 with Look Eye Tracking tracks her eyes much better than the other two communication devices with eye trackers, making art feel easier on this device as a result. Prior to her PRC device, Lilia used Tobii Dynavox devices exclusively beginning in her early elementary school years and she still enjoys her Tobii Dynavox I-12+ as it feels more familiar to her. However, her Tobii Dynavox I-12+ is older now and therefore slower than her newer PRC Accent 1400. Lilia uses multiple different software programs on all of these devices, and she receives serious art instruction twice weekly to continue building her skills and expanding her knowledge of art.
Lilia’s eyes are her superpower. She can control them like no one I know. Do not attempt a staring contest with her as she will outlast you. Many have tried. From an early age, Lilia has been strengthening her eye muscles and ocular motor control through various eye exercises and therapies, including several eye-training programs on her computers. With only her eyes, she has thrown pies and controlled squirt guns. She is also amazing at giving someone the stink eye or crook eye if she’s not happy about something. Photo shoots are often hilarious.
There is a scientific explanation for this superpower. The distance between a person’s brain and eyes is much shorter than the distance between the brain and fingers, minimizing apraxia and making motor planning easier with the eyes than fingers. And when a person cannot see, their other senses are known to become stronger to compensate. In this case, Lilia’s eyes and eye control compensate for her other motor challenges, making a staring contest a seriously bad idea for any opponent.
Lilia’s communication devices with eye trackers are calibrated exclusively to her eyes and her positioning needs to be checked each time before use. She needs to sit a certain distance away, at a certain height, in an upright and straight position. I have tried her device before and ended up with a splitting headache within 5 minutes. I was unable to create art or use her device at all. So- YES, this is ALL her and it is her superpower.
Lighting and glare are super important to monitor and control on all her devices. For example, the glare on Lilia’s Tobii Dynavox device required finding the right anti-glare shield to make the screen less shiny and less reflective. Lilia needed to test out a few until she found the perfect one. Too much lighting in a room can also cause over stimulation, so we try to keep lights directly overhead on low and Lilia wears tinted glasses that also get darker with sunlight.
Regulation is highly important to Lilia. Most of us fidget or get up and walk around when we need a body break. With Lilia unable to do this independently (although she can walk with support for balance) she activates music and music videos to maintain her regulation. She loves creating art while listening to her favorite music artists, including Taylor Swift and Katy Perry. You might see her tapping her foot along or grooving to the music too.
Lilia's 'brush strokes' on her digital canvas appear spontaneous and immediate, using her eyes to move around the page to access different brushes to change the effect or color of her markings. However, Lilia's art is far from a fleeting moment; she spends many hours layering her art until she ends up with a striking, completed piece. Layer by layer, detail by detail, you can see how Lilia transforms a blank canvas into one of her unique works of art.
Lilia gets her artistic inspiration from all around her. For example, her Ukrainian ancestry inspired her to make an eye gaze art piece to celebrate Ukraine with its blue (for the sky) and yellow (for fields of wheat) colors and vibrant wildflowers (red poppies, blue cornflowers and yellow sunflowers). Nighttime fireworks at Disneyland inspired a piece with vibrant fireworks against a black background. Lilia says she will see the art in her head and then create it with her eyes. If she’s not feeling inspired, she refuses to make art.
Did you know that Michael Angelo was not a lonely painter, taking care of the strenuous work of painting alone the 12,000 square feet of the Sistine chapel? He actually employed a small team of painters to assist him. Lilia also creates her wearables from her art in this way. She leverages what we call “translators” who listen to her instructions and become her hands when making jewelry or other wearable items. Lilia uses her communication device with eye tracking to direct her translators about which piece of art and which part of that art she wants to use to create a specific wearable item. She then lets her translators know if they got it right or if the item requires changes. She will also tell them if she likes how the piece turned out and approves it for sale or dislikes it and does not want to offer it for sale. Lilia is the Chief Creative Officer of the company and she’s great at her job.
Lilia's vision extends beyond her own artistry. She aspires to inspire others to unlock their full potential, demonstrating that with determination, even the slightest movement, like the precise movements of her eyes, can manifest profound beauty. She conveys that her art springs from her imagination, a place where she envisions the most beautiful expressions and then brings them to life with her eyes. Using her eyes to create art fills Lilia with emotions of love, excitement, relaxation, and pride. Her art is her sanctuary, a source of comfort and beauty that she generously shares with the world.
Attached is a video showing Lilia, inspired by a Halloween pumpkin, creating a new piece of art while listening to Taylor Swift. Lilia says making art with her eyes is not easy but she loves it!