Jan. 24, 2018 marked Moebius Awareness Day, a cause to which Kelsey Ferrill has dedicated her life.
Ferrill, a 27-year-old SAIT journalism graduate, was born with the condition and has been using her life experiences, both negative and positive, to bring about awareness to the syndrome.
Brandishing a purple bracelet, Ferrill invites others to ask questions and gain an understanding of Moebius.
“People ask about it [the bracelet] and what it symbolizes. I then have an opportunity to tell them about Moebius and, for the most part, people are usually really receptive and eager to know more,” Ferrill explained in an interview.
“Hopefully it sparks something bigger and they go home and actually research it or tell others.”
Moebius syndrome is a neurological condition that can cause limb abnormalities, breathing problems, speech impairment, and autism spectrum disorders among other symptoms.
However, its main manifestation is facial paralysis, causing individuals to be unable to smile, frown or move their eyes laterally.
One of the biggest challenges individuals with Moebius syndrome face is they’re often perceived as being mentally disabled or unfriendly, due to their inability to produce facial expressions.
“People tend to assume that just because I look different, I must have a mental disability as well. I can definitely tell when people think that, just by the way they talk to me,” said Ferrill.
“It is so patronizing and humiliating.”
Ferrill was bullied all through her childhood, and unfortunately it hasn’t ceased with adulthood.
“Adults still bully. They are just less obvious about it, they still make comments, they still stare, and a lot are still pretty close-minded,” she said.
“It gets easier to deal with, because you can’t say anything to me that I haven’t already heard.”
Ferrill said it’s not so much the bullying that bothers her, but the misconceptions about her appearance.
“Not being seen as an equal is hard to deal with,” she said.
On the other hand, having Moebius syndrome has produced very meaningful relationships for Ferrill, as her friends are the ones who have looked past her physical differences and accept her for the person that she is.
“They are strong and courageous people because they’ve gotten to know me even though there’s an obvious difference.”
One of Ferrill’s closest friends admitted to Ferrill that, at first, she was afraid to approach Ferrill because of a fear of the unknown.
Ferrill is currently studying communications at the University of Calgary because there are so many stories she feels need to be told, especially those of the marginalized.
“Society claims to be so inclusive of different groups of people such as those in the LGBTQ community and other minorities, [but] people with disabilities are still viewed as different, and society is still not inclusive towards them,” she said.
“It’s [the communications program] a chance to educate and help shape the society that I want to see, and that means making people more tolerant and accepting,” she said.
Ferrill said she wants society to treat those with disabilities with the same respect that they would any other person.
“I want people with differences to have the same opportunities that everyone else does, whether it’s work, school, or relationships.”
The cause of Moebius syndrome is unknown and it’s extremely rare, with estimates of it affecting between two and 20 of every one million people.
People tend to assume that just because I look different, I must have a mental disability as well. -Kelsey Ferrill.
“Differences really can hold people back,” said Ferrill.
“This is what needs to change in society, and I vow to make that happen.”