When I was 13 months old, a household accident resulted in third-degree burns to about 20% of my body.
My injuries were critical. Upon arriving at the emergency room, I was put into a medically-induced coma. I spent the next five weeks in the hospital fighting for my life. More than 40 years later, I still have noticeable scars on my neck, right shoulder, right arm, and chest.
The physical recovery from a burn injury is incredibly long and grueling, from skin graft surgeries to rehab to pressure garments to follow-up surgeries. But in many ways, the physical recovery is just the beginning. Burn injuries forever alter a person’s appearance. Burn injuries heal, but the scars don’t disappear. Emotional recovery can be a life-long process.
Social media sites like Facebook have the power to create community connections that can aid in a burn survivor’s emotional recovery. Instead, news broke last week that Facebook removed a photo of Lasse Gustavson, a Swedish firefighter who sustained severe burn injuries to his face on the job. Of all the questionable decisions Facebook has made—and there have been many—this may be among the most grievous.
After removing Gustavson’s photo two times, Facebook acknowledged the incident and reinstated the photo of the firefighter. While some news outlets are reporting that Facebook issued an apology, the “apology” appears to be a fairly typical error message.
I’m willing to give Facebook the benefit of the doubt: the people who work at Facebook agree that the photo should not have been removed. But it appears that Facebook’s removal of images of burn survivors may be a “regular occurrence.” If true, this pattern suggests a flawed algorithm, not a one-time computer glitch.
The Facebook algorithm appears to be flagging these photos for removal because their subjects’ faces are severely disfigured. In effect, these faces are rejected because they are not “acceptable” to the algorithm. As with the iconic war photograph of a naked Vietnamese girl screaming out in pain following a napalm attack, among other censored images, Facebook seems to be depending on a questionable, computer-mediated process to make crucial editorial decisions. The potential human toll of these decisions is enormous.
Most of the world has no idea of the extent of my injuries because my scars can be covered by clothing. It’s almost as if I can “pass” for normal. But my body is damaged. And because my injury happened when I was a baby, I didn’t have the mental capability to undergo an emotional recovery. By the time I realized that my scars made me different, the only recourse I knew was to cover them. And so, for the next 20 years, I kept my scars hidden.
What also made the situation difficult for me was the fact that I felt so alone. I knew other people in the world had burn injuries, but I didn’t know any of them. I tell this not to invite pity, but to illustrate that extreme isolation added to my suffering.
But everything changed with my initiation to the internet in the late 1990s. One night, I went online and searched for the phrase “burn survivor.” I found an early social-media site that shared the stories of burn survivors. I stayed up all night, reading the hundreds of profiles of other people who had been burned. I sobbed—not tears of pain or sadness, but tears of joy. I was not alone. The profound connection that I experienced that night, sitting alone in a dark room in front of a computer screen, changed my life.
I began to immerse myself in the burn community. At the age of 29, I traveled to the World Burn Congress, where for the very first time I was able to meet and talk to other burn survivors face-to-face.
There are no words that can express the deep and lasting influence those four days had on my life. I met and saw hundreds of other people who had burn injuries. I stayed up all night, every night, soaking it all in. I laughed with them. I cried with them. For the first time in my entire life, I wanted to show my scars. I felt proud of them. It was the most life-changing experience I ever had. Over time, this shared community helped me to make peace with my scars.
Facebook has the ability to create this kind of powerful community. In fact, a recent study found that active Facebook users may lead longer lives due to increased online social interactions. Just one year ago, Facebook connectivity helped a woman who was burned as a baby connect with the nurse who cared for her.
But instead of perpetuating these healing relationships, Facebook appears to be actively sabotaging them. And if Facebook is removing photos of burn survivors, it’s highly likely that the algorithm is also removing photos of people with disfigurements as the result of other conditions, illnesses or accidents.
Sharing such images takes unfathomable amounts of faith and courage. What if Facebook had censored the photo posted by a recently burned teenager? Or censored a mother’s posted photo of her burned child? The removal of such images could do irreparable harm to someone who perhaps just confronted their biggest fear in publicly sharing such a photo, only to be rejected by an anonymous, emotionless algorithm.
It’s not only burn survivors who need to view these photos. These are photos that all people need to see. We stare at people when they look different. We are afraid of people when they look different. But these reactions fade when we spend time around those who are different from us. The burned face or body becomes the new normal.
Facebook has more than 1 billion daily active users. That’s a massive platform. Imagine the normalizing effect it could have if we were to see more images of people with burn injuries and other physical differences, and how these images might enlighten our shared human experience.
And yet, rather than championing diversity, Facebook is systematically removing differences, thereby dictating to us what is beautiful, what is dangerous, and, ultimately, what is an acceptable human appearance.
It’s often said that burn survivors are among the bravest people in the world. Meanwhile, Facebook, a corporate giant, is cowering behind flawed algorithms. Facebook owes the burn survivor community a formal and sincere apology. If it is going to continue to claim its mission is “to give people the power to share and make the world more open and connected,” then it owes all of us a human-centered approach to communication and connectivity.