Mount Airy artist with ALS featured in virtual gallery

Jun. 16—In Stacie Votaw's room at the Lorien assisted living community in Mount Airy, colorful paintings filled with abstract, geometric shapes line the walls.

The paintings weren't created using a traditional brush and canvas. Instead, Votaw painted them with her eyes, using computer software and an assistive technology communication device that tracks her eye movements.

It's a technique the Mount Airy resident now uses, ever since amyotrophic lateral sclerosis (ALS) rendered her unable to hold anything or write, she said.

Votaw's paintings are showcased in a virtual art exhibit that launched Thursday, joining the works of other artists around the nation who are either living with ALS or died from the disease. The gallery is posted at tinyurl.com/IAMALS.

Called "The Artistry of ALS," the gallery was curated by the community outreach team at I AM ALS, a nonprofit providing support and resources to ALS patients and their caregivers.

"The gallery is meant to remain up in perpetuity, and will highlight the work of these amazing artists for years to come," Elin Adcock, a representative from I AM ALS, wrote in an email.

ALS, a disease of the nervous system that weakens muscle function, affects about 5,000 new patients every year, according to the Centers for Disease Control and Prevention.

Votaw's journey with the disease started in September 2020, when she began losing strength in her right hand and experiencing twitching in her arm muscles. She received an official diagnosis in April 2021 after months of tests.

Having lost the ability to walk and speak since then, Votaw uses a power chair that she drives with her head — a device she's dubbed her "techno chariot."

A computer equipped with lasers tracks her eye movement and figures out the letters she stops on to spell words. The words are converted to a synthetic version of her voice, developed using a mix of previous recordings and AI software.

The same computer helps her paint with her eyes.

"I draw out my subject by painstakingly stretching small lines, point by point. And then I fill in the area using selection tools to prevent me from painting outside the desired area. That gives me the freedom to paint 'free eye' with a variety of medium, tools, and texture," Votaw wrote in an email.

Growing up, Votaw's dad was an architect and artist and her mom was an art teacher. Her love for art was born at a young age and persisted through her high school and college years, she said.

Now, even though she paints using an eyegaze device and software instead of with her hands, her passion is still at the core of what she does.

"I would say my process is the same although my technique has changed," Votaw said. "I still draw and paint what appeals to me on a compositional level. And I still play with and take on the challenge of content based on what interests me and pique my curiosities."

In addition to Votaw's work, the gallery features paintings, crochet work and poetry from 20 other artists with ALS.

According to Adcock, the idea for the gallery was born from her own interactions with an ALS patient who created artwork, as well as from Mandi Bailey, an I AM ALS community outreach team member who spearheaded the effort.

One of Votaw's featured pieces depicts brightly colored oxygen tanks against a vibrant background. In an artist's statement accompanying the painting, she wrote that the piece was inspired by wanting to make the best of all the time she's spent in medical facilities because of ALS.

"It was inspired by a set of tanks rolled into a quaint day room," the statement reads. "I thought how sad and ugly that they had so haphazardly been rolled in and left to mar the pleasant environment. But then I also saw that they could be used to make something beautiful."

Votaw's other piece in the gallery is titled "Self Portrait," and depicts a blue cornflower flower in an orange vase.

The cornflower is an international symbol of ALS because of its resilience. The orange vase represents Votaw because of her love for the color orange, the accompanying artist's statement explains.

"This work is a self portrait," her description says. "I used an AI (artificial intelligence) image creator, DALLE-E 2, as my creative partner to provide me with a reference image. DALLE-E 2 served as my hands that can no longer pick wildflowers. It substituted for my legs that can take me out shopping for the perfect orange vase."

For those who look at the gallery, Votaw said, she hopes the experience expands their perceptions of people with ALS and other disabilities.

"I hope they leave with the realization that just because one has a debilitating disease that leave them completely paralyzed, unable to speak, eat, or breathe, it does not mean that they are bereft of the mental inspiration, creativity, ingenuity, and emotion that made them the person that they were before stricken with ALS," she said.