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Goldenhar Syndrome

I tell him this all the time, you’re really lucky that your face is paralyzed and you’re hot.
— Katie Giles

Shelby grew up in Arvada, Colo., in a hearing family with no access to Deaf culture. He recognized that he was always different, but there’s more than just being hard of hearing that separated him from his peers. Shelby was born with Goldenhar Syndrome, a congenital condition that impacts the development of the eyes, ears and spine (13). Shelby never had any spinal defects, which allowed him to play football, but his face and ears were heavily impacted.

“It led to me being hard of hearing because my ear canals aren’t straight to the ear drum, they kind of loop around so by the time the sound gets there it’s weaker,” Shelby says with the calm demeanor he’s well known for, “In your ear drum you have three small bones that vibrate to transfer sound to the brain but mine are fused into one so there’s less vibration, so those two things really impact my hearing.”

Hearing loss is only one symptom Shelby has of Goldenhar Syndrome. He also has no external ears. They were surgically removed because they were undeveloped and not growing at the same pace as the rest of his head. He has scars lining the side of his head and two small holes marking the spot where ears should be. His face is defined by sharp features and deep-set green eyes that never close.

Shelby doesn’t have a blink reflex anymore. He doesn’t have any undamaged nerve endings anywhere on his face. He can’t smile, has no laugh lines and his forehead is wrinkle free because he can’t raise his eyebrows. His joke about needing photoshop to mask his flaws is running gag he’s had since he came to Gallaudet. He sleeps with his eyes open, and in order to moisten his eyes, must roll them back in their sockets.

Before he was 17, Shelby had sixteen surgeries on his face to try and reconstruct it. “My first few surgeries were for my ears, so they did a skin graft from my stomach and tried to make ears which didn’t work, then surgery to remove those. Then surgery for hearing aids, then surgeries for a new set of fake ears,” he explains, clearly glossing over a long, confusing string of medical procedures. When one surgery damaged his facial nerves, “I had to relearn how to talk and drink and eat… all that fun stuff,” he says, laughing, an expression characterized by a muffled chuckle and exaggerated shoulder bobs to make up for his stoic expression.

Shelby didn’t know any other kids like him when he was young, but found a community in team sports, “That was my outlet for all my frustrations, that’s where I felt like I was normal,” he says, “I felt like once I got on the field I was seen as a normal person instead of a hard of hearing person.”

Shelby is not the only one who feels like sports were a helpful equalizer, his fiancée Katie Giles, 26, feels the same way. The pair is getting married in May 2017 at a spot with great significance to the two of them: the football field. During their undergraduate years at Gallaudet, where they met, Shelby was a two-sport athlete and Katie juggled three. He played football and threw for the track and field team, and Katie played soccer, swam and ran track. They became close when Shelby joined the track team, and even now sports continue to be a bonding force for them as they are both coaches.

 “The track team had a very strong Deaf culture,” Katie says after coaching a swim team practice one day, her long red hair neatly braided down her back, “and then Shelby joined the track team with Leo [another talkative football player], and they were loud as shit, I was like stop! You’re ruining our team vibe! So I went over to give them a talking to and while I was talking to them Shelby was intriguing to me,” she says. She didn’t realize the first few times she met Shelby that his face didn’t move and that he didn’t have external ears because he generally wears his hair long, sometimes past his shoulders.

“I didn’t even think anything of it… I tell him this all the time, you’re really lucky that your face is paralyzed and you’re hot,” Katie says, recounting her discovery of his muted expressions. The couple became fast friends after a few tentative encounters and quickly developed into a romance. Shelby proposed on Katie’s graduation day in 2015, two years after they started dating.

Shelby Bean & Katie Giles laugh together during a photoshoot on November 11, 2016.

Shelby Bean & Katie Giles laugh together during a photoshoot on November 11, 2016.

Katie is also hard of hearing, but comes from a very different background: she has Meniere’s Disease, a form of progressive hearing loss characterized by fluctuating hearing, tinnitus and vertigo that continues until hearing is permanently lost (14). Usually, this disorder only impacts one ear and impacts individuals after their second decade. The disease also hardly ever impacts multiple people in the same family (15).

In Katie’s family, Meniere’s is vastly different: it’s genetic. “For my mom and me it’s both ears, and one of my aunts was born completely Deaf with the same disease,” Katie says, adding on that both of her ears are impacted. For a hard of hearing woman her speech is impeccable, but she and Shelby hear at similar levels, “I can understand speech a lot better than Shelby because I grew up hearing almost perfectly and as time progresses it’s going down and down, but I can still remember what it sounds like, or I know what to expect of what it should sound like.”

Katie had the bonus of a mother who is a Special Education teacher. She’s fully Deaf, but was able to fight for Katie’s rights in the classroom. Katie says her mother was her best advocate growing up, because she could keep her out of special-ed and in speech therapy. Katie’s mother also introduced her to reading and writing much earlier than most students, so Katie excelled in the classroom, leaving no room for teachers to pass over her, the only hard of hearing girl.

“I went through school [without] interpreters, and then my first college I went into was Miami University, a big public school and I had my class with 300 people and that was when it really hit me like, oh my god I’m actually Deaf,” Katie says in what is called simultaneous communication, or ‘sim-comm’ (16). She transferred to Gallaudet after a year at Miami.

Gallaudet’s campus, is nestled in between Northeast D.C.’s NoMa (17) and Trinidad (18) neighborhoods, and is full of students, teachers and staff with varying degrees of hearing and varied use of assisted listening devices like cochlear implants and hearing aids. Most hard of hearing and Deaf individuals cannot speak with Katie’s clarity, but they form a tight bond over the ability to learn and use ASL over the course of their time on campus.

Katie Giles, 26, and Shelby Bean, 25, enjoy a conversation with friends in ASL at Penn Social, a bar in downtown, Washington, D.C. on May 14, 2016.

Katie Giles, 26, and Shelby Bean, 25, enjoy a conversation with friends in ASL at Penn Social, a bar in downtown, Washington, D.C. on May 14, 2016.

All archival images courtesy of the Bean family.