Like a grinding stone: Users’ experiences of crowdfunding inequality

— Nora Kenworthy, PhD

A panel from the comic, “A GoFundMe Campaign Is Not Health Insurance” by Ted Closson, published at The Nib. Closson’s comic tells the story of his friend, who died while trying to crowdfund to pay for his insulin.

ve got a new paper out this week, which was a very long time in the making — a first deep dive into ethnographic data on users’ experiences with medical crowdfunding. The article peels back the lid on the profound inequities between different crowdfunder experiences, providing a counterpart to the all-too-frequent stories of easy success and viral empathy we see on the news.

The stories people told about unfairness and inequality on GoFundMe were haunting. Because I think stories like these should not just sit behind a paywall, I want to highlight some insights from them here. Of course, if you’d like, you can access the full article here —and if you hit a paywall you can always reach out to me at njk8 at uw dot com for a copy.

It’s a hard thing to talk to people about crowdfunding campaigns that don’t do well, or that gather very little attention. We’re so inured to the idea that it’s okay to compete on a social media platform for donations to pay for essential medical care that crowdfunders who don’t succeed begin to think of themselves as ‘failures.’ “It’s nobody’s fault, and certainly not yours,” Trevor reflected about his campaign, which raised $0:

“Life is a grinding stone, it either grinds you down, or polishes you up, depends on what kind of metal you’re made of. Those of us who fight to survive will always cast a wide net. That or I’m a failure as an individual and I have to beg strangers for extra money while I work 40+ hours a week as a full-time dad.”

Crowdfunders who build campaigns for health needs are painfully aware of how unequal this marketplace is. “Not to quantify it too much,” a woman crowdfunding for her husband’s insulin told me, “but little blond-haired, blue-eyed girls with rare cancer are certainly a bit more popular than [my husband].” Crowdfunding platforms amplify and deepen these existing inequalities, creating a space where certain types of people, causes, and narratives do best. Meanwhile, users are inundated with hopeful messages about the endless “kindness” of donors and “opportunities” they have on the site to build their campaigns.

Even campaigns that don’t do very well can cultivate positive emotional experiences as cash becomes a form of care. Emily, a young woman with leukemia on the verge of homelessness raised just over $1000. But, when she started earning money, “it kind of hit me, like, people actually care.” Care didn’t fix Emily’s economic vulnerability or her unstable housing, however.

Sometimes even very successful campaigns, like Chris’ campaign after ending up in the ICU with undiagnosed diabetes, still leave people in the lurch. Chris raised more than $15,000, but quickly ran out of cash covering debts and mounting bills. When we spoke, Chris was still living in a small camper with his three kids, and struggling to get onto Medicaid. He had gone a week without one of the two kinds of insulin he needs due to lack of funds. Even GoFundMe has recently acknowledged that crowdfunding cannot substitute for a more robust health system.

But GoFundMe profits, whether or not Chris gets out of the financial hole he’s in or Emily finds more stable housing. And for those who bring ample social and financial privileges to the platform, it offers a radically different experience that exacerbates inequalities. Take the case of Mark and Sofia, who turned to YouCaring (now owned by GoFundMe) after a car accident. They raised more than $75,000 — so much more than they needed (after friends jumped in to help and insurance came through to help them) that their campaign organizer said “it was a little scary…We were thinking, can we give the money back if we don’t need it?” Mark and Sofia benefitted from numerous forms of social, cultural, and financial capital that ensured their campaign’s success. Afterward, they used the extra funds to help Sofia quit her “high stress” job and open a coffee shop in a rapidly gentrifying neighborhood. Even the stories people tell in crowdfunding campaigns are influenced by social inequalities and biases. Mark and Sofia’s story was described as being “no fault of their own…[which made it] so much more powerful. It was dramatic, it was fast, and it was like, criminal. And it happened in another country.”

Meanwhile, in a campaign for another car accident victim — Mariana, a Latina woman whose family were farmworkers — family members refused to share a lot of information to the campaign page, taking pains not “to seem like they were just trying to get pity.” Mariana’s campaign raised $1200 toward a $2500 goal; her family faced astronomical bills from her months-long ICU stay, but “we were just hoping to start at… a low starting point…and see where it would go.” While many in their community donated, the campaign did not go far. I was told that Mariana’s father, a farm worker, would “be in debt until he dies.”

As I ask in the article, “If successful crowdfunding relies on offering narratives of resilience and hope, for whom are these available?” More broadly, “For whom is crowdfunding an opportunity, and for whom is it a dismantling?” Stories like these help us to unmask the often invisible ways that inequities get produced at the intersections of our online and offline lives. They invite us to think in more complex ways about how digital platforms both amplify and conceal health inequities, and they reveal the fundamental flaws in assumptions that crowdfunding can serve as an ad-hoc safety net.

Ultimately, GoFundMe may be shifting the ways we think about what we deserve, what we are entitled to, as citizens and human beings. If we’re constantly inundated with messages about especially sympathetic and tragic cases that go viral, we may start to forget that health care can be a right for all people. Trevor was quite clear about how his own thinking changed during his campaign. Ultimately, he decided not to share his GoFundMe page at all:

“I did research to look at other people’s GoFundMe pages and I was just like, holy shit. I have no right to be asking for money on this page with some of the [other] stories that I read and what they’re going through. So, my fucking story of just being a poor single dad with just bills he can’t afford…that’s… a lot for me to ask. I certainly couldn’t go on Facebook and make it some big social media thing where I’m begging for money to pay for insulin. I mean, my pride’s worth more than that to me.”

The stories that circulate on Facebook and GoFundMe — that these sites curate and project into public view — reinforce an ethic of individualized deservingness that prioritizes unexpected, solvable, blameless tragedies. Trevor was highly aware of where he fit on this hierarchy of deservingness. What becomes invisible here — what is deliberately occluded — is an alternate social world where people access care simply because it is provided, and everyone deserves it, regardless of how good their campaign looks. I hope these stories remind us of the costs of forgetting about that alternate world, and of the inequalities that are concealed behind feel-good stories on social media.

I’m particularly grateful to those who shared their stories with me to make this article and the broader research project possible. Many collaborators and interlocutors contributed to the project along the way, including Lauren Berliner, Jin-Kyu Jung, Mark Igra, Aaron Davis, Emily Fuller, Christine Hahn, Cadence Luchsinger, Chelsea Rios, Wanjiku Wainaina, and Martha Lincoln, as well as participants of several conferences and classes where parts of this research were presented. The research was supported by the UW Simpson Center for the Humanities and Royalty Research Fellowship, and by the National Science Foundation.

To read more about my work, please visit my UW faculty page.

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UW Crowdfunding Research

Research updates on crowdfunding from Nora Kenworthy, Mark Igra, Jin-Kyu Jung, and Lauren Berliner at the University of Washington. https://bit.ly/34xhfiY