justin bieber 'did something very important for the facial difference community'
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(files) in this file photo taken on january 27, 2020 canadian singer justin bieber arrives for youtube originals' "justin bieber: seasons" premiere at the regency bruin theatre in los angeles. - justin bieber on friday told fans in a video posted to instagram that he's been diagnosed with ramsay hunt syndrome, which is causing him partial facial paralysis.
(photo by lisa o'connor / afp) (photo by lisa o'connor/afp via getty images)
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an advocate for people living with facial difference says justin bieber’s decision to go public with his diagnosis of ramsay hunt syndrome is an impressive act of bravery that has instilled “confidence and pride” in people with similar conditions.
the singer revealed earlier this month that he had contracted the rare neurological disorder, which caused temporary facial paralysis, in a video posted to instagram.
“as you can probably see from my face, i have this syndrome called ramsay hunt syndrome and it is from this virus that attacks the nerve in my ear and my facial nerves and has caused my face to have paralysis,” bieber explained in the three-minute video. “i’m gonna get better. i’m doing all these facial exercises to get my face back to normal. we don’t know how much time it’s going to be, but it’s gonna be… it’s gonna be okay. i have hope.”
alim somji, vice chair of aboutface, a charity aiming to end stigma and discrimination against people with facial difference, is impressed that bieber went public with his diagnosis, since conditions that impact the way a person’s face looks can be hard to talk about publicly.
“i appreciate and i’m grateful for it,” somji says of bieber’s openness. “it’s difficult to have that conversation, and he’s lit that fire around the world.”
he adds that bieber’s choice to go public via a video, where his facial paralysis is visible, was a brave and significant choice.
‘social media can be incredibly unforgiving’
“social media can be an incredibly unforgiving place,” he says. “the fact that he’s had the confidence to go forward and do what he’s done, in the face of horrible comments and aggression and bullying, i hope will provide confidence and a sense of pride for those in the facial differences community. it’s a very positive way of addressing a facial difference.”
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and though bieber hasn’t publicly identified as a role model for the facial difference community — and somji stresses that he shouldn’t have to — as one of the most recognizable pop stars in the western world, his honesty about his experiences may help raise awareness of the challenges of living with facial difference.
“i’m not sure this was [bieber’s] intention, but he did something very important for the facial difference community,” somji told healthing. “we don’t have a lot of spokespeople — there aren’t a lot of people with facial differences in the public eye, because we tend to be shut out of that particular world.”
and for a celebrity to talk publicly about ramsay hunt means “it is no longer a fringe condition,” somji says. “it’s in the open, at the top of entertainment news.”
somji was born with a lymphatic malformation — basically, a clump of benign cysts that usually appear on the head or neck. he needed surgery from an early age, and a failed procedure when he was only nine months old led to paralysis on the right side of his face.
“i’ve always been visibly different,” he says, describing the health challenges of having a different face, which, for him, included daily antibiotics, surgeries, countless doctor’s appointments, as well as orthodontic and dental care.
when he first heard about bieber’s diagnosis, somji, who has lived with facial difference all of his life, says he felt empathy for the musician having to deal with such a sudden and dramatic change to the way his face looks and functions.
“i grew up with [facial difference],” he says. “it’s always been a part of me. so, for better or worse, i have not known life [without it.]”
alim somji is the vice chair of about face, a charity aiming to end stigma and discrimination against people with facial difference. supplied
“for me to feel comfortable enough to address my facial difference in any sense in a public realm — what it’s meant to me and how it’s impacted my life — that journey took me 15, 20 years,” somji says. “[but bieber] managed that in, i’m not sure how long ago his diagnosis was, but probably in two to four weeks.”
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and it’s that willingness to communicate that can make all the difference for others.
“the things i hope somebody in that situation would do, he’s already done,” says somji. “people are talking about it and there’s an awareness of what a facial difference is. i couldn’t ask for any more than that.”
still, despite the admiration he has for bieber and his willingness to share his experience, somji also recognizes that opening up is not for everyone.
“it’s an immensely personal experience, and how somebody deals with it is going to be up to them,” he says. “some people are going to be very comfortable talking about it, and some people will really struggle with the feelings and the experience and the memories of they [used to have].”
but what somji wants the general population to know is that while people with facial differences do deal with stigma and discrimination, they also lead full, happy lives that aren’t defined by their conditions.
‘facial differences are often portrayed by villains’
“having a facial difference does not mean that [your] entire identity comes from that difference,” he says. “within the media specifically, those with facial differences are portrayed as villains who are have long, damaged histories and who are bitter about [their face] — i’m thinking of every james bond villain, or scar from the lion king.”
that stigma, somji says, comes from a lack of understanding.
“most facial differences are not common, but they’re not necessarily uncommon either,” he says. “we can normalize the idea of people with facial differences existing, and doing normal, regular everyday things… justin bieber is, in a way, normalizing facial difference.”
maija kappler is a reporter and editor at healthing. you can reach her at mkappler@postmedia.com
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