“All the world’s a stage, And all the men and women merely players.” That quote has always rung true to me, but the post-post-modern world of ubiquitous social media has made each of us the producer and star of our own reality show, and we’re constantly looking for a popping storyline, something that makes us stand out from the crowd. It’s harmless fun when all that’s at stake are likes for your outfit of the day or your witty tweet. But what happens when your ability to play the social media game becomes a matter of life or death?
GoFundMe has become the crowdfunding site of choice for patients without insurance or whose insurance companies refuse to cover their care. And while cries of “GoFundMe isn’t health insurance!” ring out and the system is lambasted, there is also a parallel narrative about how strangers rallying to help others reveals the truly decent core of society.
Let’s talk about that.
We can all see that there is something grotesque about a health care system that makes ill people have to put themselves on display to strangers to beg for their lives. Being seriously ill is incredibly stressful and deeply personal. There’s a reason privacy laws around medical treatment are so strict: it’s not anyone’s business what’s the matter with me or you or the man living two doors down. Sick people are discriminated against, and thinking those biases don’t play out in crowdfunding campaigns is naïve.
The political and societal failures that require people to suffer the indignity of exposing their medical histories to strangers and virtually panhandle to pay for treatment are incredibly important, but they’re not the focus of this essay. I want to talk about the performance that is required for crowdfunding to work. Not only do people who are fighting for their lives have to beg online, they have to present as the right sort of person — the kind of person who is deserving of the charity of strangers.
We tie health to morality. This lens distorts how we see patients, and we sort people into categories then determine the quality of care we think they should receive. Fit, attractive people who eat right, exercise, pay their taxes and contribute to society are held up as examples. If one of them has a mishap, the lines will be around the block to help pick them up. Children are generally seen as innocent, and most people will gladly help a suffering child. But if we think their parents are bad people and want to punish them enough, some will decide saving the child’s life is a “family matter.” Their parents should have behaved better if they wanted help.
Bitter, surly people who are angry about being ill don’t make good GoFundMe candidates. Neither do people who are chronically ill or disabled and require long-term, expensive medical treatment to stay alive . There is a suspicion that they’re malingering and trying to take advantage, that they’re scamming. Fat people will be screeched at about their lazy habits and poor diets before being flung to the wolves. Mentally ill people will likely be ignored — they’re too frightening and inscrutable.
Add poverty, race and other socioeconomic factors into this melange, and you can guess who gets left even further behind.
What if you don’t even have ready access to the internet? What if your writing skills are poor and you don’t have anyone who can help you punch up the copy of your campaign? What if you don’t have any adorable kids who don’t want to lose their loving mother? What if you’re a felon? What if you’re unattractive? What if you are all of these things?
Who deserves to be saved?
The correct answer is: everybody. But there’s something about that that doesn’t sit right with us. We are so programmed to respond to hierarchy that even when death is on the table, we look for someone to give preferential treatment.
GoFundMe healthcare campaigns are real-life Survivor . We’re watching a reality show whose contestants we vote for with Facebook and Twitter likes and shares and our donation dollars. The key to winning is effectively pulling at the audience’s heartstrings. But empathy is often in short supply and doled out grudgingly. Going viral — infecting others with your tearjerking story — and winning the ultimate prize (your life) is impossible for many, and they’re going to die.
By all accounts, he was a talented, amazing young man who had many friends and loved ones, who are devastated by his loss. Yet the inability to translate that, for it to resonate on social media, for his story to get those coveted high-value shares wound up with him being $50 short. And it was a death sentence.
Really think about how disgraceful it is for the quality of your social media marketing skills to determine whether or not you live or die. It’s so dystopian a horror show that Black Mirror wouldn’t dare present it straight.
(This article was originally published under my pen name Harrison Kitteridge on November 25, 2017. It has been edited for style and clarity, and the title has been changed.)