This article was originally featured on MIT Press Reader. This article is adapted from Nora Kenworthy’s book “Crowded Out: The Trust Costs of Crowdfunding Healthcare.“
It all started when Hannah’s friend from church, Allison, posted a frantic note on Facebook that her young son Beckett had been hit and run over by a car while playing outside. (The names used in this article are pseudonyms to protect the individuals’ privacy.) Beckett was life-flighted to a nearby trauma center with multiple organ failure. Hannah kept checking in, asking what she could do, and after a few days she asked if anyone had offered to set up a GoFundMe. “No, no one’s even thought of that,” Allison replied. She was grateful for the help, exhausted by constantly providing updates and answering questions about Beckett’s status and of course worried about the medical bills.
Hannah built a crowdfunding page, including pictures of the family’s blond-haired kids decked out in matching sports gear, surrounding Beckett’s bedside at the hospital. “I think I included [the photos] just to show people that this is the sweetest family, they’re doing everything that they’re supposed to, their kids are well taken care of, these are good parents,” Hannah explained. Hannah’s campaign adeptly communicated to an audience of donors that this was a family deserving of help: It was an unfortunate, horrible accident; Beckett was an innocent, previously healthy child struck down by misfortune; and they were “good parents,” a “really sweet family.” Beckett’s campaign ultimately raised about $5,000, and he made a nearly full recovery after several weeks of intensive care. Expressions of support and prayers for recovery poured in from their close-knit community.
What many donors did not know, however, was that Hannah and Allison had gracefully withheld more complicated truths about his accident from the public narrative. In a scenario straight from many parents’ worst nightmares, it was Beckett’s father driving the car that ran him over. Beckett had wandered into the parking lot from the playground as his father was backing up their car. The family was scared people would judge them, Hannah explained, so they left out that detail. “You see so much on social media of people just shaming other people for accidents like that,” she remarked, that they decided to focus on Beckett’s recovery and loving family. Hannah insisted they were “not keeping it a secret — if people [asked we planned to] tell them,” but she also deleted inquisitive comments on their Facebook page so Allison wouldn’t have to answer them.
Hannah thought people would have “understood that it could happen to anybody,” but she wanted to spare Allison any public shame and preserve the family’s privacy. The family didn’t end up needing all the money the campaign raised. It was helpful, of course, but their church had mobilized a large support network to help with childcare and other needs, and they’d already reached their out-of-pocket maximum on their robust, employer-provided health insurance. Ultimately, what the campaign really provided was a place to cultivate social support and reaffirm the story that theirs was a good family whose tragedy arose through no fault of their own.
It was an easy story to tell as long as they withheld key details about how the accident had actually happened.
Sites like GoFundMe have become powerful social arenas where ideas of goodness, merit, and deservingness are taken up, scrutinized, and circulated. Hannah’s campaign for Allison’s family is a telling example of how crowdfunders appeal to these ideas and how they use campaigns to reaffirm their own identities as good people and upstanding citizens. Powerful ideologies of deservingness and meritocracy have been foundational to many charitable and social relief efforts, but online crowdfunding introduces additional dimensions of public scrutiny and reinforces the moral toxicities of these long-standing ideas. It provides a powerful new public stage on which dramas of deservingness distract us from the more fundamental idea that everyone, regardless of problematic assessments of “merit,” could be worthy of care and assistance when they need it.
When users consider starting a GoFundMe campaign, they are bombarded by messages of opportunity. The company has good reason to present crowdfunding as a marketplace of equal opportunity, welcome to everyone. But most users quickly ascertain that not everyone is treated equally. As Hannah intuitively sensed, there were many ways that Allison’s family appealed to the moral hierarchies of this marketplace. Wholesome, young, healthy, White, Christian, and beset by tragedy: It was an easy story to tell as long as they withheld key details about how the accident had actually happened. The pressure they felt to edit their story comes from the highly competitive economies of sites like GoFundMe, where each campaign must appear more uniquely deserving of aid, attention, and compassion than the next. There is little room for human fallibility here, nor for those who struggle, as Hannah herself did, with chronic health conditions that often elicit blame or assumptions that one’s ill health is due to individual behaviors or decisions.
The moral terrain of crowdfunding is fueled by two persistent social ideologies that powerfully shape our social, health, and cultural systems — the dual, and intertwined, myths of meritocracy and the “deserving poor.” Michael Young originally coined the term “meritocracy” in 1958, using it to describe Britain’s transformation from a society where life chances were determined by one’s status at birth to one where status was allocated based on personal achievement. However, he used the term satirically, trying to describe how institutions that seemed merit based in fact rewarded and elevated those who already had the economic and social means to succeed.
Meritocracy, as Daniel Markovitz has written, is a trap: Societies, especially neoliberal economies such as the United States, have enshrined a system where people are told that if they just work hard enough they can succeed, but radically hierarchical and racist institutions reproduce and reinforce elitism. When people fail to succeed in this system, it becomes particularly easy to blame their own efforts or characteristics rather than the falsely meritocratic systems themselves. “It is hard indeed in a society that makes so much of merit,” wrote Young in 2001 as he reflected on this misuse of the term meritocracy, “to be judged as having none.” The ubiquity of our belief in meritocratic systems is evident in the widespread use of phrases like “equal opportunity” and “pull yourself up by your bootstraps.” In particular, given the economic, educational, and social impacts of structural racism in U.S. society, meritocracy upholds and justifies racial inequities.
If meritocracy is a relatively recent myth, the myth of the deserving poor is a much older one. Political philosophers have long debated to whom society owes forms of social support. As early as the 17th century, poor parishioners in England were given badges to wear in exchange for social support under the Elizabethan poor laws. These were intended to elicit shame and deter a sense of entitlement among the “able-bodied” poor. By the 1800s, poor laws allowed citizens to “lay claim to aid from the state only on condition that they accept inferior status,” explains the social philosopher Elizabeth Anderson in her article “What Is the Point of Equality?,” creating a distinction between the deserving and the undeserving disadvantaged, between those who are not responsible for their misfortune and those who are.” In the United States, 19th-century charities upheld similar values: The social policies and programs which grew out of these practices, including health-care safety nets, powerfully upheld this ideology.
If meritocracy is a relatively recent myth, the myth of the deserving poor is a much older one.
As conservative leaders in both the United States and the United Kingdom retrenched postwar social programs in the 1980s and 1990s under the banner of neoliberalism, public perceptions of social welfare shifted, creating dominant discourses that severely blamed the poor for their circumstances. Narratives of a “culture of poverty” and racist, denigrating portraits of “welfare queens” laid the moral groundwork for exclusion from the body politic based on “presumed moral laxity.” Ironically, as the medical anthropologist Gay Becker observes, “deservingness [in U.S. social policies] is related to productivity, and hence, to wealth — in short, to the ability to find the financial resources to pay for medical care.” Thus, those who most need financial assistance for care — due to structural racism and histories of economic exclusion — are often deemed the least deserving of it.
These dual myths of deservingness and meritocracy have been particularly powerful tools for upholding gender, class, and, particularly, racial hierarchies. Charity given under such ideologies, Anderson writes, “reflects the mean-spirited, contemptuous, parochial vision of a society that represents human diversity hierarchically, moralistically contrasting the responsible and the irresponsible, the innately superior and the innately inferior, the independent and the dependent. It offers no aid to those it labels irresponsible, and humiliating aid to those it labels innately inferior.” Within the context of neoliberalism and post-Jim Crow racial resentments, deservingness increasingly became a means by which Black people could be scapegoated — with White Americans blaming Black Americans for getting too much support from scarce social programs while also blaming them, rather than structural inequities, for their circumstances. Deservingness served to uphold racial hierarchies and signal that marginalized groups did not belong to the body politic.
Finally, deservingness offers one more advantage to the powerful: It focuses social attention on constructing elaborate criteria by which the poor and powerless can be deprived of resources. These petty public dramas of deservingness distract us from turning our attention toward the rich and the powerful and asking how they came to deserve what they have or whether they have any obligations to redistribute their wealth. Selective deservingness enshrines the already powerful as arbiters of who will get handouts while insulating them from questions about why the powerless are left to fight for unfairly distributed handouts at all.
Meritocracy and deservingness are everywhere on sites like GoFundMe. Many popular campaigns implicitly or explicitly appeal to these values, using phrases like “hardworking,” “breadwinner,” “hero,” and “supermom.” The rhetoric of superheroes is particularly prominent, especially among campaigns for children, reflecting the near superhuman characteristics of strength and goodness that crowdfunders must claim to succeed. GoFundMe itself reflects this rhetoric by highlighting the work of “GoFundMe Heroes” and “kid heroes” through a podcast, social media accounts, and “heroes celebration” events. Reflecting the mythology of meritocracy, GoFundMe brands its heroes as “everyday people doing extraordinary things.” Most of these so-called heroes are people who have launched projects to help communities or neighbors. Yet this rhetoric excludes a primary way that crowdfunding is used: by people seeking help for themselves in desperate circumstances.
When health relies on the charity of a digital crowd, it creates and exacerbates deep inequities and undermines claims to more universal, rights-based systems of healthcare. As Ralph Nader argues, “a society that has more justice . . . needs less charity.” Crowdfunding shows that the inverse of this statement is also true: More charity means less justice. Ultimately, the spillover effects of crowdfunded care impact everyone. The world of the deserving popular is a very unhealthy place to end up.
While reinforcing a perception of the crowd-based economy as “democratic” and “wise,” real-world data reveals just how unequal the crowdfunding marketplace is, particularly for those who need the most help. But more broadly, it shows that the inequities of crowdfunding act like toxins that affect all of us — our health, our sense of what we owe each other, and our visions for the future.
Nora Kenworthy is Associate Professor at the University of Washington Bothell. She is the author and editor of several books, including “Crowded Out,” from which this article is adapted. Her writing has appeared in the American Journal of Public Health, Social Science and Medicine, PLOS One, Scientific American, the Washington Post, and the Los Angeles Times.
