By Abby Farrell
Figure skating hasn’t always been an easy journey for 17-year-old Tobi Ellis, but their love for the sport and passion for advocacy work has kept them motivated.
At 8 years old, Ellis, who identifies as nonbinary and uses they/them pronouns, came across a video of Bradie Tennell skating and convinced their mom to let them try the sport.
“I loved it. It was instantaneous,” Ellis said with a smile. “I wanted it so bad. I skated any chance I got. I begged to go to public skates. I’d do anything I could to skate. I just loved it. I was obsessed with it.”
Ellis skated up until their freshman year of high school when the COVID-19 pandemic hit. A year later, their family picked up and moved to South Korea. Due to rink closures during the pandemic and the fact that the closest rink in South Korea was 2 ½ hours away, Ellis was forced to hang up their skates for nearly three years.
It wasn’t until Ellis moved back to the United States in June of 2023 and started college at Lake Forest College in Lake Forest, Illinois, at only 16 years old that they found their avenue back to skating through the school’s new skating team.
“I came back to it now with even more of a passion and a love for it because I hadn't had it,” Ellis said. “I feel like when you lose something, you love it even more.”
They were excited but hesitant to get back on the ice because over the three years that Ellis wasn’t skating, they progressively lost a significant amount of their vision, to the point that they were determined to be legally blind. This deterioration had been occurring all of Ellis’ life, but it was most significant in those years that they were away from the ice.
Ellis was born with nystagmus, which causes the eyes to make repetitive, uncontrolled movements, resulting in poor vision, but that didn’t explain their progressive vision loss, leaving doctors puzzled.
Four different diagnoses and countless medical tests later, Ellis underwent genetic testing, and it was discovered that they had an abnormal gene mutation known to cause ocular neuropathy, a condition in which a group of nerves in the eye becomes damaged, leading to vision loss.
Ocular neuropathy is the most likely cause of Ellis’ deteriorating vision, but because there is not enough research about the condition, it isn’t a confirmed diagnosis.
As their vision progressively worsened, Ellis recalls going to the eye doctor and being shocked that they couldn’t see the same line of letters on the eye chart that they could previously.
“That's a little kick to my ego,” Ellis joked about the experience. “But it's things like that you just have to laugh about it at some point. You just have to make fun of it because otherwise you're just going to get stuck in this continual cycle of depression and frustration. You have to find the positives; you have to find good things. And that's what skating is to me. Skating is my good thing.”
Left with only the ability to see things up close and no depth perception, getting back on the ice meant not only regaining the skills they lost, including their Axel, but also learning how to physically navigate on the ice without the ability to see.
But Ellis’ biggest challenge was overcoming the mental hurdle of not being able to see the ice when attempting a jump.
“I had this mental block of jumping, which is a very real thing for a lot of athletes,” Ellis said. “But when you can't see, that adds a whole new aspect because you were scared to jump … It was terrifying to try and figure that out and try and adapt because [before] I was doing the sport with usable vision. Now I'm doing the sport with not a lot of usable vision.”
As a data science statistics and music double major, the solution was simple: combine those two strengths to count the beats of the music and use that rhythm to time their elements and position on the ice.
“I work well with numbers, and I work well with music, two things that really benefited me coming back to the sport because I took the music and I turned it into math,” Ellis said. “I took something that I was terrified to come back to, and I laid it out in a way that I understood it.”
With a background in music, having played the cello most of their life and being trained as an opera singer, Ellis has always counted the beats in their skating programs but began relying on it heavily when they returned to the sport in college. They also have to rely on their hearing to not only listen to the music, but when they are practicing, they can listen to other people’s blades on the ice to determine how far away they are to avoid a collision.
“It takes time, it takes learning and it takes adapting and figuring out ways to do it, but it works,” Ellis said. “I think so much of that is getting out of my head and kind of putting it in a way that I understand.”
Now that Ellis has reached to a point where they can use a system of counting to not only time their programs and track their position on the ice but as a tool to get out of their head when they are feeling uncertain, Ellis recognizes that not being able to see actually becomes an advantage during competition.
“It's funny, I can't see, and I think that's my superpower,” Ellis said. “I genuinely believe it, because not being able to see is terrifying at first, but once you find ways to adapt, you're set. I can't see the people, the audience. I can't see what makes people nervous. I don't have that fear. To me, it feels the same skating alone on that ice.”
Less than a month after joining Lake Forest’s collegiate skating team, with help from their former skating coach, Ellis focused on relying on music to count their program to regain their Axel and enter their first collegiate competition, the 2023 Bronco Challenge Cup in Kalamazoo, Michigan.
Although their competition started off rough with Ellis running into a fellow Lake Forest skater during the warmup, Ellis looks back and laughs at the experience because of how nervous they were going into it. Although their program wasn’t perfect, the experience finally allowed them to breathe a sigh of relief, because even with some mistakes, Ellis was still able to deliver what they considered to be a successful skate for their comeback.
“I have no idea how I did that,” Ellis jokingly said of their program. “I think I was just very committed to the bit.”
During their time in college, Ellis has also become involved in several research projects aiming to improve accessibility for people with disabilities at their college.
This past spring semester, they recently participated in research to develop a mobility cane that uses haptics to sense nearby obstacles and alert the user through vibrations, with the goal of eventually making the technology accessible and affordable.
As a blind student studying data science, it was not only exciting for Ellis to learn the technical side of research but to also share their experience to improve the technology for others who are blind.
“It was such a good learning experience and getting to provide feedback from the perspective of someone who can't see is like, ‘Hey, that's not working right? We should do something with it,’ or ‘This is my perspective as someone who can't see. This is too overwhelming with the haptics and the vibration,’” Ellis said. “I think that to me was a really cool experience and taught me a lot and taught me how to work with research.”
Ellis, who is also a legal studies minor, is currently involved in another research project through the data sciences department to create an accessibility plan that not only ensures that data science courses are accessible, but that these courses teach all students how to make their data accessible to people with disabilities.
Through their skating journey and academic research, Ellis hopes to be a role model for other blind individuals who might be interested in figure skating and for the students who they hope to positively impact with their research.
“Having that representation means so much, having that ability and that platform to say, ‘This is my experience,’” Ellis said. “But at the end of the day, I’m doing it not for myself, but doing it for the fact that the next person who comes to this college should not have to do this. The next person who gets into figure skating who can't see should deserve to have someone to look up to.”
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