Mercy Markets

Medical crowdfunding pits the needy against each other, and makes the rest of us gods of triage

One of the few universal features of most popular party games is the element of revelatory choice. We enjoy being scandalized and heartened in turn by learning about each other’s fears and values, the way their logic functions in extreme hypotheticals. “Fuck/Marry/Kill” or “Would You Rather?” can bring out the game-theory survivalist in us, often revealing deeper values than the superficial questions seem capable of. Declaring that you would rather save a kitten than an adult man with six months to live is a particular kind of choice. Barring interaction with a malevolent genie, there are few circumstances where anyone would have the power for it to matter.

In these games, what we choose is guided in part by the intimate and possibly even trusted group of peers we’re playing with. They give us reasons to highlight some values and downplay others. How they will judge us in that moment is the only real stake, and our choices about ultimately refer only to ourselves, regardless of who we say we’d kill.

In place of the projected fantasy self you’d like to be, there is a very real other on the other end of these campaigns for whom our choices are not at all abstract

But charity crowdfunding — on sites like GoFundMe, YouCaring, GiveForward, or Indiegogo’s Generosity vertical — stages a much different version of “Would You Rather?” Declaring that you would rather fund a beloved local library volunteer’s anti-convulsant medication than the transition surgery for a survival sex working trans woman is obviously a very different kind of choice than saving hypothetical kittens. Choosing not to choose anyone to fund at all is yet another kind. In place of the projected fantasy self you’d like to be, there is a very real other on the other end of these campaigns for whom our choices are not at all abstract.

The homepage of GoFundMe teems with funds worth funding. From chemotherapy treatments for uninsured Americans to funeral services for a famously curmudgeon cat murdered in cold blood by a neighborhood poisoner to reconstruction efforts for community buildings lost to arson, it is home to nearly every variety of calamity that can befall human, animal, structure, or landscape. That is, until you return the next day to find a scroll of fresh new calamities.

That there is always hardship in the world, always a person in need of a leg up financially, is not peculiar to our time, but social media have worked to collapse these tragedies indiscriminately into our lives, eradicating the levels of distance that once seemed built in to them. We could once justify not giving to a homeless woman on the street because we had no cash on us, or to the charitable cause some earnest teenager called about by claiming we’re out on a run and don’t have our cards handy. But the internet’s bottomless well of needs appears directly into our timelines often enough that we can’t go on making excuses for why we don’t give. Even if those excuses are just to ourselves.

The origins of crowdfunding are far less grim than the current landscape suggests. “Since the idea took off a half decade ago, its biggest successes have had one thing in common,” Peter Moskovitz claimed in a Wired feature on crowdfunding. “They’re awesome! A 3-D printer you can use at home. A RoboCop statue in Detroit. Rebooting Mystery Science Theater 3000.” The requests from campaigns once skewed more visionary than charitable — less as an impossible game of “Would You Rather?” and more an inspiring exercise of “What if?” The campaigns that were successful promised eco-friendly things like edible vegan cups or cultural projects like a Joan Didion documentary people were so stoked about that it was funded in a day, or an art space spearheaded by Marina Abramovič that specialized in long durational pieces so God knows what they’ll get up to in there!

Such projects allowed funders to feel like they were investing in human potential, taking direct responsibility for the technologies and cultural innovations that will propel us into the future. But giving to a medical crowdfund is less about creating the future than salvaging something from a status quo that is not actually in our best interest to perpetuate. “Producing a worthy illness: Personal crowdfunding amidst financial crisis,” a study by professors Lauren S. Berliner and Nora J. Kenworthy, looked at 200 randomly selected GoFundMe campaigns seeking funds for medical care and found that the “campaigners do not seem to feel that it is necessary to explain insurance status in order to demonstrate deservingness or credibility, indicating that Americans are well-acquainted with the inadequate financial protections offered by insurance, and the unavoidable, extraordinary medical expenses that characterize serious illness or disability within contexts of health care austerity in the U.S.”

The publicly available data from crowdfunding sites suggest people are eager to give: GoFundMe has raised over $3 billion dollars from its 25 million donors, with medical expenses being its top fundraising category. YouCaring has raised over $550 million across 290,000 fundraisers since its inception in 2011. The promotional copy on all these sites, coupled with the campaigns that earn a spot on the local or national news, make it seem as though crowdfunding works and works well. There is some truth to the idea of American altruism: Pew Research Center found in 2016 that while only 22 percent of adults had contributed to a crowdfunding platform, 68 percent of those were for individuals facing hardship. (The second most common contribution, funding a product or invention, was 34 percent.) And seeing as 61 percent of Americans didn’t know the word crowdfunding, it’s possible they’ve given to a crowdfund without knowing it.

Beneath those feel good numbers is a more stark reality: Berliner and Kenworthy’s research revealed that 90 percent of the campaigns did not meet their goal and that average level reached was about 40 percent. The sheer volume of needs on crowdfunding sites means that for any campaign to be successful, it has to become far more visible than the rest. “On top of managing your health and your expenses, now you have to make sure you present your malady with authenticity. Think of your cancer as the origin story a tech startup tells about itself on the About section of its website,” writes Luke O’Neill in a recent Esquire feature on how crowdfunders often rely on going viral. In this context, the sick cannot rely on, say, the inherent good of supporting cancer treatment in general but must market themselves as being especially worthy and more likable than other cancer patients.

The sheer volume of needs on crowdfunding sites means that for any campaign to be successful, it has to become far more visible than the rest

The crowdfunding platforms are aware of this need for virality, but rather than mitigate it, they offer false hopes for success in the form of exceedingly basic best practices for campaigns. YouCaring has a post, “Viral Fundraising: Make the Most of Your Campaign’s Potential,” that features detailed instructions on everything from what time of day to post your campaign on social media to the always helpful advice to use high-quality images instead of those ultra-shitty ones you had planned. On Generosity, IndieGogo’s charity vertical, a post on “impactful” personal messaging implores campaigners to “Share, share, share!” and notes “You aren’t limited to your network, or even your network’s network — with the right sharing strategy and a little bit of luck, you have the potential to share your fundraiser with millions of people worldwide.”

What these instructions don’t mention is that you’re probably out of luck from the start if you don’t have key social media literacies that lend themselves to people believing in your deservingness. They also don’t mention the research that demonstrates that fundraising while visibly Black has proved less successful than fundraising while white. They don’t mention that you’re more likely to attract contributions if users identify with you in some way that compels them to act on your behalf — meaning the more marginal your identity with respect to your audience, the less likely they are to give to you. They don’t tell you how a 2016 study in Information Systems Frontiers found that longer project descriptions yielded a higher likelihood of funding, as did having a moderately positive tone — though too much positivity was linked to lower funding outcomes, perhaps due to credibility issues. In short, the sites’ advice do not address the many biases of potential donors.

In Berliner and Kenworthy’s study, they compared a highly polished campaign for Van, a six-year old with rhabdomyosarcoma, with a father of four’s campaign for funds to pay for adenomatis polyposis treatment and for care and treatment for his two autistic sons. From that description alone, it is one tough game of “Would You Rather?” But the high media literacy of Van’s campaign managers put him miles ahead of the father of four, whose trouble articulating specific needs and even navigating the site have left his campaign largely neglected.

Moskowitz points out in his Wired article that championing ad hoc public fundraising for infrastructure and social services normalizes the idea that individual citizens should consider themselves responsible for such basic necessities. Given the political history of health care in the U.S., the onus on the individual feels ever more urgent.

The decision to click on the crowdfunding link comes most often from a decent place, but decency alone cannot help us determine the worthiness of a campaign. Most citizens are unequipped to determine whose financial and medical needs are most acute and are actually more likely to withhold contributions to those with the most complex and dire needs because their requests are not as coherent or specific as those with the social and real capital to put together flashy campaigns starring photogenic, chronically ill children.

Crowdfunding for medical care is the most transformative change to fundraising since the 1980s, when a critical mass of charities switched to an individual-sponsorship model. Rather than make an appeal to save “the whales,” donors were asked to sponsor a specific whale, a particular animal that would be kept safe precisely because of their contribution. Similarly, acreage in rainforests was parceled out to patrons who became arboreal, if absentee, guardians. Donors generally took these pledges on faith: Being thousands of miles away with no mechanism to check if their piece of the Amazon was being deforested did not keep them from adopting these little patches of the planet.

It was different with the children. Commercials, like this one featuring actress Sally Struthers, implored viewers to sponsor a child — depicted vividly as severely malnourished — for $21 a month, or $0.70 a day. Viewers were promised they could become a “special friend” for a child in a developing country, even exchanging letters with them to monitor the effects of their charity and presumably bask in the gratitude. That the charities could suggest such children had little access to formal education one moment and promise that they could write sponsoring families letters in English the next apparently was not expected to raise any skepticism.

Today’s crowdfunding model removes even more barriers between the contributor and the requesting party. You can share direct comments and messages through these platforms, receive thanks in real time, and even have your name and contribution displayed for visitors to see. But this direct relationship to the person requesting funds does nothing to mitigate the circumstances that left them unable to seek care without begging. And it does almost nothing to actually mitigate their illness: $25 isn’t going to put much of a dent in a radiation-therapy bill.

On every page within the YouCaring site is a banner with the words “KINDNESS IS POWERFUL” over a button inviting visitors to “Start a Free Fundraiser.” The sentiment is benign, even optimistic on its face. But in the context of the crowdfunded emergency, kindness also imbues us with a feeling of actual power. Withholding or giving funds gives ordinary citizens an unprecedented power of triage, to decide who is worth trying to save with their contribution. Each viewer of a crowdfunding appeal might find themselves an inadvertent member of a mini death panel, with the person in need largely at the mercy of deeply entrenched biases and the quality of their photographs. The added cruel irony is that this power is ultimately impotent: Even when viewers choose to give, contributions cannot keep pace with the population’s extraordinary medical needs, no matter how fervently anyone believes that entrepreneurial spirit rather than solid public policy will be our saving grace.

One of the markers of Van’s campaign is that he is a superhero, valiantly battling his illness and even wearing a cape in his photos. The study authors note, “The superhero motif is powerful and popular, and legible across a variety of literacies and tastes. It also plays into neoliberal dogmas regarding self-branding, independence, and the super-human skills needed to navigate medical and economic systems while working against potential narratives of vulnerability that would make these socio-economic dynamics more visible.”

Giving to campaigns like Van’s may mainly feed fantasies of personal agency: People give because they feel they can make a difference. The fact that we are not financially, professionally, or ethically equipped to make informed or powerful choices that actually save lives is beside the point. Neither Van nor the struggling father and his children belong in the privately held game of “Would You Rather?” that pits their struggles against one another.

There is an argument to be made that it is easier to say no to an idea than a person — this makes donating to a crowdfund campaign feel more compelling than participating in, for example, collective action for a better health care system, one that doesn’t leave citizens at the mercy of social media clicks. But there is also a case to be made that to advocate publicly for a system that would benefit citizens universally is to admit to our own personal need for such a system. It means admitting that we too are vulnerable to the whims of an indifferent market-based health care system. There are many among us who would rather quietly, privately play superhero.

Alana Massey is a writer covering culture, identity, vice, and virtue whose work regularly appears in outlets like Elle, Hazlitt, the Guardian, the New Inquiry, and more. Massey is the author of All the Lives I Want, a collection of essays about our relationships to women in pop culture. Her interests include books, champagne, cats, and money.