Nora Kenworthy is an associate professor in the School of Nursing and Health Studies at the University of Washington Bothell.
For those of us who have studied medical crowdfunding — and indeed for anyone well enough, physically and financially, to consider contributing to covid-19 campaigns — the cacophony of charitable appeals presents hard questions about how help should be sought and offered online. The depth of this impending economic and health crisis compels all of us to respond — but are donations to well-meaning campaigns just Band-Aids on bullet holes?
Because decades of government austerity measures have eroded this country’s already limited safety nets, many Americans are forced to seek help wherever they can find it. Even before the current crisis, medical crowdfunding campaigns were more prevalent in states that did not expand Medicaid under the Affordable Care Act. Similarly, we’ve seen precarious workers affected by covid-19 turning to crowdfunding as other systems have failed to protect their income, health coverage or benefits. As one uninsured crowdfunder seeking money for insulin told me last year, “That’s all you can count on ... taking a shot in the dark.”
What should not escape notice, as we scroll through pleas on social media, is how much of the covid-19 crisis was preventable. The health-care system safeguards that might have limited widespread infections were systematically undermined by deliberate political choices. Similarly, our reluctance to lower drug and health insurance prices and to expand health coverage makes insulin dependence an acute economic crisis for many Americans. It’s worth remembering that the bullet holes that crowdfunding seeks to patch arise from deliberate societal choices.
Crowdfunding is rarely a fair or ethical solution to complex problems. About 90 percent of medical campaigns fail to reach their goals — and those that succeed may not represent the most urgent or important needs. Each campaign competes in a marketplace of need for donor dollars and attention. This means that crowdfunding can amplify and reinforce contributors’ social and racial biases: For example, research shows that medical campaigns on behalf of black patients receive, on average, $22 less per donation than those for white patients.
As we confront many kinds of giving over the coming months — celebrity appeals, corporate largesse, government bailouts — we should remember civil rights activist Audre Lorde’s adage, “The master’s tools will never dismantle the master’s house.” Philanthropy supports the existing power structure; it doesn’t contest it. To the extent that crowdfunding asks Americans to dedicate their resources to deploying Band-Aids, it distracts us from mobilizing to change the circumstances that create and worsen these crises.
Like a pressure-release valve, GoFundMe campaigns siphon off our grief, our rage, our capacity for mobilization, and direct them toward individualized, online giving. “Click here: Save a life,” we are told. Yet there are no donate buttons for a better disease surveillance system, or for better political leadership back in January, when the first U.S. covid-19 case was identified. Crowdfunding could not prevent the “testing fiasco” that writer Ed Yong described as the “single flaw that undermined every other countermeasure” in the nation.
There are alternatives; the United States is not only a country of individual philanthropists. In Seattle and New York and other cities, people are mobilizing to help one another — organizing food donation sites, supporting housebound residents and sharing crucial information. This country has a long history of such mutual aid, particularly among communities of color. We can learn from how the Black Panther Party organized community health clinics and food aid, and how people banded together after Hurricane Katrina. Mutual aid encourages us to both respond to urgent needs and to confront the structural forces that fuel our vulnerability. The ethic of mutual aid, as New York activist Mariame Kaba taught organizers last week, is solidarity, rather than philanthropy; it is justice, rather than pity.
Some efforts to respond to covid-19 may continue to rely on sites such as GoFundMe, but we must recognize that crowdfunding is an imperfect tool rather than a solution. If we are lucky, we will emerge from this crisis with a broader understanding of our capacities for mutual aid beyond hitting like, share and donate buttons. We will remember the importance of public health systems, social safety nets and health coverage for all. We will refocus our attention on the bullet holes, and not just the Band-Aids, in the fabric of our American systems.