Most of the time, Liza Sylvestre knows she takes on the appearance of an able-bodied person.
Her cochlear implants and ability to read lips allow her to hold one-on-one conversations almost flawlessly. In those situations, it's easy for others to forget that she's deaf.
But for the artist receiving her master's degree in fine arts from Illinois this weekend, the fallout from deafness is something she deals with constantly. When she's checking out at the grocery store and can't hear the clerk, she'll sometimes find herself on the receiving end of a nasty look. During a conversation with more than one or two people, she can't locate the person speaking quickly enough to understand them. And during a conversation in her studio Thursday, a loud vacuum was turned on in the hallway, which rendered her cochlear implant useless.
"My experience as a hard-of-hearing person, a deaf person never stops," she said. "And so it's always affecting everything I do. ... It's definitely shaped who I am as a person. It's not an easy thing to grow up with. But I'm also really grateful for my hearing loss in a lot of ways, too, because it's made me who I am."
Sylvestre's world began to grow quieter at the age of six, when an auto-immune disorder began breaking down the hair follicles in her inner ear, which are crucial for interpreting sound. As her ability to hear worsened throughout high school, she did her best to hide her disability and learned to cope. She went to a mainstream high school, where she received good grades, before studying art at University of Minnesota. She finally received a cochlear implant early in college, when she still had around 20 percent hearing in one ear. All the while, she rarely asked for the help she needed.
"It happened so slowly that I learned how to accommodate too well," she said. "I just spent a lot of time and energy focusing on what was being said, and I didn't have a note-taker or an ASL interpreter. ... My experience wasn't, you wake up one day and there's a loss. My experience was this slow slide that was difficult to measure or deal with in a lot of ways because it happened so gradually. And so in a lot of ways there are a lot of things I didn't deal with. I didn't learn to advocate for myself; I didn't learn how to demand what I needed in certain situations."
With her deafness has come a fascination with how the senses inform the way people perceive art and the world around them. Sylvestre focuses much of her work on relating her experience living without one of those senses.
For most of her career, Sylvestre focused her work on abstract painting and drawing. After graduating from Minnesota in 2006, she received various grants that allowed her to continue her studio work while holding various odd jobs.
During her time at Illinois, though, her focus has shifted to mixed media, including video.
"I couldn't do a lot of things and say a lot of the things I wanted to say through painting," she said. "And so moving over to this new media focus allowed me to explore and more fully vocalize what my work is right now, which is a couple of things. One of them is sharing what my personal experience is like as someone with a disability. I have a profound hearing loss. I'm 100 percent deaf when I don't have my cochlear implant on. It's something I've grown up with my entire life. And so it's a way for me to share what my experience or filter of the world is. I do that through drawing, and I do that through video."
Pinned to the wall of her studio are several sheets of paper covered in her handwriting, which she says are meant to be written as diary entries. Scribbled out, though, are the letters of sounds she can't decipher with her implant.
"It's me sharing my innermost thoughts but then going back and redacting the words I'm not able to hear, and so it, I hope, walks this balance of revealing lots of things but then also hiding things, which is what I think is what living life as a disabled person in this world feels like often," she said. "When out in the world, you're aware of people witnessing your disability, and that's kind of their only access to you."
The curriculum for her master's degree required her to present her work and then hold a discussion with a large group, which is virtually impossible for her. So she changed the form of the conversation. She turned out the lights and had speakers hold a flashlight to their face, which she called "Conversations in the Dark." In "Standing in a room without sound," she posted a video of herself speaking, although the only image the viewer can see is a small sliver that moves around her face, which replicated the way her eyes move around a person's face as she reads lips. In another project, she asked volunteers to listen to audio descriptions of artwork from famous artistic institutions and draw what they thought the artwork looked like.
She also taught classes during her time at Illinois, including one that discussed how art is experienced through the senses, such as how art would be different if it were made for people who can't see.
"I took these kids for kind of a weird, wild ride of, 'What does it mean to communicate and how can we use art as a means to communicate,'" Sylvestre said. "The world is designed for able-bodied people, so unless you are exposed to someone that's not able-bodied or you have some sort of empathetic sensitivity, you are not going to even think about it or be aware of it."
Growing up, Sylvestre never had a mentor to help her navigate the world with her disability. Her hearing loss was so gradual that she was never able to integrate into the deaf community.
When she packs up her studio and leaves Illinois, she hopes to use her platform to help create a different and more inclusive world for young people with disabilities.
"I think that I am interested in teaching because I see it as an opportunity to do some of my advocacy work," she said. "I think academia needs to be infiltrated by more people with disabilities, so it creates a space for younger people with disabilities to come up and have role models and people to look up to. And not just hearing loss, but I think I'm empathetic to all kinds of disabilities. Obviously, hearing loss is my strong suit, but I think I can maybe more easily understand what it's like to move through the world as a blind person than maybe the next able-bodied person can, or being in a wheelchair or any of those things.
"I think that the history of disability in this country hasn't allowed for people with disabilities to thrive. And I think it's important for someone like me to be an academic and work with those avenues of the world to change them and to allow people who are younger than me to do the same."