Last week, Justin Bieber posted a video to Instagram not only sharing his diagnosis of Ramsay Hunt syndrome, which has left half of his face paralyzed, but also showing it.
“As you can see, this eye is not blinking. I can’t smile on this side of my face. This nostril will not move,” the worn-out-looking Canadian singer, dressed in a beanie and flannel, said in the video.
Coming just days after several of Bieber’s concerts were canceled, the news brought an outpouring of well-wishes for Bieber, 28, who was in the middle of touring for his fifth and sixth studio albums, “Changes” (2020) and “Justice” (2021).
What is Ramsay Hunt syndrome, the condition affecting Justin Bieber?
It’s a bold move, some might say, to post your personal health struggles for 241 million followers to see — especially when, to some extent, your professional career depends on your physical appearance. But Bieber is just one of several people in the spotlight who have been outspoken about their health recently.
Such openness isn’t always encouraged. In Selma Blair’s memoir, “Mean Baby: A Memoir of Growing Up,” which was released last month, the 49-year-old actress describes being diagnosed with multiple sclerosis (MS). “My doctors urged me not to go public,” she wrote. They told her: “’You’re an actress; your body, your voice, it’s all you have.’ “Blair went forward anyway, posting about it on Instagram in 2018.
These disclosures come as public figures have more direct access to fans through social media posts, and their intimate-feeling live streams and stories can go straight to their followers. Although celebrities may have previously opted to keep their medical issues from public scrutiny, today, many seem to believe that the benefits — increasing awareness of medical conditions and controlling the narratives regarding their own health — outweigh the costs.
In these online spaces, 27-year-old singer Halsey can post a video of herself wearing a heart monitor and talking about postpartum health problems and endometriosis to millions of followers — with the ease of sending a message to a friend. Comedian Lilly Singh can share that her “ovaries have the AUDACITY to be wilding out” from her hospital bed. And Hailey Bieber, Bieber’s wife, can tell her fans about being rushed to the emergency room in March for a blood clot — while simultaneously offering firsthand evidence that she is okay.
As for Justin Bieber’s condition, “if he were to hide it, that would open more questions of what’s wrong with him. Not doing something is more of a risk than him actually doing something,” says Christine Kowalczyk, an associate professor who studies celebrities and branding at East Carolina University. “If people hear that he’s canceling shows, he wants to be open and honest on the reasons why, so people will continue to come and see him.”
Kowalczyk says she has observed a shift toward transparency in the entertainment industry over the past decade or so. She points to Angelina Jolie’s 2013 New York Times op-ed about breast cancer as an example. In the essay, Jolie, who in 2016 suffered from facial paralysis similar to Bieber’s, disclosed her decision to have a preventive double mastectomy when she learned that she had the gene that increases the risk of developing breast cancer and ovarian cancer. “I am writing about it now because I hope that other women can benefit from my experience,” she said.
Studies—including one specifically looking at the response to news about Jolie’s preventive treatment—have suggested that these disclosures can prompt more information-seeking and screening for illnesses among the public.
“A lot of celebrities will have access to doctors that the general public may not, and so it may probe someone to identify something that they might not have been aware of,” Kowalczyk says. “It’s good for education and awareness.”
Being up front about an illness can also be a powerful act of advocacy. Halsey spoke at the 2018 Blossom Ball for endometriosis research. Selena Gomez helped raise nearly half a million dollars for research on lupus, which she has herself. And wider awareness of Jada Pinkett Smith’s alopecia, an autoimmune condition that causes hair loss, led to numerous calls to end the stigma around the disease. Rep. Ayanna Pressley (D-Mass.) called herself a “proud Alopecian.”
Chris Smit, co-founder and co-director of DisArt, a production company focused on disability culture, sees Justin Bieber’s announcement of his temporary disability as an opportunity to inform the public. “It’s showing that we don’t have to be afraid of disability, that we don’t have to pretend that disability doesn’t exist,” he says.
Much of the mainstream conversation around disability either turns into what Smit calls “overcoming narratives” or devolves into a kind of spectacle. “I don’t think we spend enough of our energy thinking about the actual lived experience of disability,” he says.
And maybe if we did, he suggests, the response to Bieber’s experience would look a little different. Smit, who is disabled, noticed some comments about how brave Bieber is for posting about his condition on social media. “In my culture, that’s not bravery,” he says. “It’s just living.”
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