PleaseSaveMeWhen Crowdfunding Is the Difference between Living and Dying

An Anthology 2.0, 2018 (Illustration by Yukai Du)

This article was published in Broke Issue #82 | Spring 2019
When I was 17, my mother got sick—very, very sick. Brain-surgery sick. Coma sick. Half-of-her-skull-removed sick. She eventually pulled through after months of suffering, setbacks, and rehab, but once the bulk of her medical ordeal was over, we were faced with the matter of her medical bills. Brain surgery isn’t cheap; her final tab ran to just over $250,000, an amount I still cannot quite comprehend. Thankfully, the health insurance we got through my dad’s construction union covered most of the costs, but we were still left with significant debt—enough that we had to start selling things off, and my dad had to work overtime. He started taking antidepressants because, as he told me, “The whiskey ain’t workin’ no more”—and a jug of Wild Turkey is cheaper than an MRI.
 
While my mom was in rehab, her coworkers at the high-school cafeteria where she’d collapsed months before planned a penny auction to help us cover groceries. They called it “Sunshine for Susie,” and I still remember feeling a sickening knot in my stomach when the school secretary announced the event during homeroom. I didn’t quite have the words for it then, but I know now that that rotten bundle of emotion contained fear, anger, and shame—shame that my classmates would know that we were struggling, that my mom wasn’t okay, that we didn’t have enough money to get by. I didn’t go to the auction, and I spent the rest of high school pretending that everything was fine.
 
In retrospect, Sunshine for Susie was just one of countless precursors to the United States’ increasing reliance on community-supported fundraising. So were the endless spaghetti suppers down at the old firehouse, the kids selling candy on the subway, and the donation jars that sat by the register at every rural gas station and café from here to the Jersey Shore. It was a kind of apolitical solidarity bound by simple kindness and proximity rather than intentional praxis. People in my village called it being neighborly. Anarchists call it mutual aid.
 
Whether it was to fight childhood lymphoma or fund the local baseball team, that kind of small-scale, almost absentminded charity has long been part of the connective tissue that keeps impoverished and under-resourced communities together. As social safety nets erode, privatized healthcare costs shoot up, accessible healthcare coverage bottoms out, and communities are destabilized by gentrification, this kind of everyday altruism has become the only remaining option for many people facing an unexpected financial burden.
 
We’ve entered an era where “internet panhandling” has become the rule rather than the exception, and a petitioner’s viral video, robust social-media presence, or heartbreaking selfie is worth its weight in doctors’ visits. In fact, successfully marketing a personal tragedy on crowdfunding sites such as Kickstarter, GoFundMe, Indiegogo, and others can literally be the difference between life and death.

Capitalism’s Mutual-aid Flaw

“The mutual-aid tendency in man has so remote an origin, and is so deeply interwoven with all the past evolution of the human race, that it has been maintained by mankind up to the present time, notwithstanding all vicissitudes of history,” anarchist philosopher Peter Kropotkin wrote in his landmark 1902 treatise, Mutual Aid: A Factor of Evolution. He argued that it was humankind’s nature to collaborate and care for one another, an impulse born of both biology and social bonds that evolved during periods of peace but manifests most strongly during times of strife.
 
What, then, would Kropotkin think of GoFundMe, that catalog of calamity and misery, especially as the company continues to consolidate its near-monopoly on the medical-crowdfunding market? As far as Mike Isaacson, a doctoral student in economics at the New School for Social Research, is concerned, the crowdfunding model’s baked-in flaws are yet another example of the pitfalls of capitalism.
 
“In many ways, crowdfunding has become a means by which capitalism can distribute less than what is necessary while still maintaining the reproduction of the labor force,” he explains. “It allows production to proceed as normal despite the working class not being paid enough to live on. It’s different from community-based mutual aid because it’s based in no community and the aid isn’t mutual—crowdfunding is a more demeaning and discriminatory version of welfare.”
 
One of this new economy’s major flaws, aside from the fact that it operates this way at all, is that those with more social capital stand a markedly better chance of having successful campaigns. Crowdfunding works best for individuals who have large followings on social media, marketing experience, or proximity to highly developed online networks. And most people are well aware of the risks and inequities of the process. (Some even hire crowdfunding consultants, further widening the gap between the hopeful and the damned.)
 
Those who benefit from the lightning-in-a-bottle strike of viral popularity increase their odds of success too, but those who enter this arena without any advantages must face the grim reality that there are too many sick people and not enough donors to go around. There’s also a kind of respectability politics at work here: No one questions a funding campaign for a sick child, but campaigns for asks like drug addiction or gender-confirmation surgery can be politicized or challenged from perceived “moral grounds.”

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Isaacson sees crowdfunding’s privilege gap as a class issue—and as more of a feature than a bug. “Users who don’t have the time, energy, or resources necessary to build up internet clout likely won’t see a good return from crowdfunding,” he explains. “It privileges users who are able to project legitimacy through things like good spelling and grammar, writing style, and any pictures and video that might be associated with the campaign. Thus, users who received poor education are also at a disadvantage.”


On top of all that, most crowdfunding platforms (excluding GoFundMe, which canceled its 5 percent platform fee in 2017 and, ironically, now survives primarily via user donations) skim a little off the top, ensuring that donors line corporate pockets before benefiting campaigners. These companies also reserve the right to pull the plug on any campaign that violates their guidelines. Sometimes they’ve used this power for good, as when they deleted a campaign to benefit James Fields Jr., the neo-Nazi who murdered Heather Heyer at 2017’s Unite the Right rally in Charlottesville, Virginia. Sometimes their policies have made them inadvertently complicit in fraud—like the New Jersey couple who raised over $400,000 for homeless veteran Johnny Bobbitt Jr. and then refused to give him the money—and other cold-blooded scams. Together, all this makes for a grotesque pastiche of the overarching capitalist system that rules our lives, a dystopian nightmare where life and death hang in the balance—and that balance is predicated on follower counts.

Pursuing crowdfunding also forces people who are suffering through stressful, sometimes agonizing, frequently life-threatening situations to further bare their souls and share their pain in a ritual of public flagellation. “Needing urgent healthcare in the United States is a lot like playing strip poker, except instead of being stripped of your clothing, you get stripped of your dignity, and instead of being fun, it sucks,” a trans woman named Emerald tweeted in October 2018. She was trying to raise $37,210 to pay for medically necessary surgery, about halfway to her goal on GoFundMe, and frequently tweeting about using humor to offset the psychological burden of fundraising. Sometimes you’ve got to laugh to keep from crying.

In Isaacson’s estimation, the prospect of transforming the current crowdfunding model into something more egalitarian is bleak. “Apart from complicated funding schemes in which groups of campaigns somehow pool their money, I don’t foresee crowdfunding becoming more equitable,” he says. “It will always privilege marketing skills over need.”

In many ways, crowdfunding has become a means by which capitalism can distribute less than what is necessary while still maintaining the reproduction of the labor force.

Filling Healthcare’s Gaps

Danika Harrod, a singer and songwriter who also works full-time in entertainment media (full disclosure: Danika was once a coworker of mine at VICE), turned to crowdfunding when her father, a self-employed construction worker with no health insurance, was diagnosed with stage 3 cancer in April 2017. Once he entered treatment, the bills began piling up. Harrod set up a GoFundMe that raised $10,000 to cover his bills while they waited for him to be approved for Medicaid.

But even with Medicaid, it was impossible for Harrod’s father to get by without additional income. His cancer had progressed to stage 4, with an estimated prognosis of six to 12 months to live, and when he had surgery to remove a tumor in his esophagus, doctors discovered dozens of additional tumors. That’s when Harrod launched a second GoFundMe, which ultimately brought in more than $40,000. Harrod says that it sometimes felt as though the state of California was waiting for her father to die.

“I get so mad when I think about how terrible our healthcare system is, and how evil our government is, and how we had to rely on outside help to get us all the way through his funeral. Because of California opioid laws, even as a bedridden, stuck-on-an-oxygen-mask, stage 4 cancer patient, my dad was still required to physically pick up his pain medications himself,” she tells me. “We needed 24-hour care for the last few weeks of his life, and he was in a hospice facility for the final week or so. This all came out of the GoFundMe.”

If it weren’t for her own social media platform and the help of friends and others sharing the campaign, it would’ve plateaued completely, leaving him in the lurch during his final months.

“I feel incredibly lucky we received [over] $50,000 total for his care, but we ran out of money many, many times during his last few months,” she tells me. “The stress of financial pressure kills people. He probably would have survived longer if the state did what it should be doing for its patients. We were so lucky to get the support we did, but there are so many people out there who are not that lucky.”

Krys Méndez, a doctoral student at the University of California, San Diego, knew the odds were stacked against him before he launched his campaign. “I’m a young, single, queer person of color without the economic resources that come with a long work history,” he tells me. “Aside from my working-class immigrant parents, I have very little family in the United States. I needed to turn to my community for support.”

Méndez, who has multiple sclerosis, is fundraising for a bone-marrow stem-cell transplant that has been shown in several studies to be effective in halting MS progression. The procedure hasn’t been approved by the Food and Drug Administration as a treatment for MS, so it isn’t covered by his student health insurance. Even if he’s accepted into one of the few clinical trials available in the United States, many of them are either closed or “pay to play” (meaning that he would be responsible for over $100,000 in medical expenses were he to enroll). For Méndez though, the possibility of being able to better control his disease far outweighed the negatives, so after months of extensive research, he assembled a small team of friends and colleagues to launch his GoFundMe. Since then, he’s raised nearly $30,000, drawing upon his experience as a grassroots fundraiser for a Brooklyn-based immigrant-rights organization.

“I realized the importance of capitalizing on social media as a way of getting my fundraiser the most attention online,” Méndez says. “Although it’s an incredibly surreal experience to have to market myself and my condition through hashtags (#HelpKrysBeatMS and #KrysBeatsMS), Facebook and Instagram pages, and a calendar of events, I also don’t think I could’ve raised nearly as much without using these tools.”

Sunrise, 2018 (Illustration by Yukai Du)

Only the rich can survive

Shane Patrick Boyle’s death in 2017 from type 1 diabetes was widely reported, not because of the uncommon nature of his disease—40,000 people receive a type 1 diagnosis each year in the United States—but due to the harrowing circumstances of his death. Boyle died because he occupied a space that will feel familiar to many “healthy” Americans—the purgatory between “being insured” and actually being able to cover one’s medical costs. Boyle developed the fatal complication diabetic ketoacidosis (DKA) because he was forced to ration his insulin while waiting for his new health insurance to kick in and was $50 short of his $750 GoFundMe goal to pay for a month’s supply of insulin. His death galvanized a spate of reporting on the ongoing crisis facing diabetics who lack comprehensive healthcare—and those who are forced to crowdfund for basic, life-sustaining medication.

A quick search of the word “insulin” on GoFundMe yields over 8,000 results from people asking for help to pay for insulin and insulin pumps. Many of these campaigns are fully funded; others languish, with months passing between donations. It’s heartbreaking to see any medical fundraiser flounder, but it aches especially for those who lack access to necessary medication that could easily be covered by a functional government. This reality sends some diabetics to the black market, buying medication through informal networks such as Craigslist.

“Without Craigslist I have no idea what I would do,” a type 1 diabetic named Timothy tells me via email. “I literally can’t survive without insulin and that harsh reality makes it so that I am always dependent on work. […] I’m entering my 19th year of being a type 1 diabetic, and this disease definitely affects my energy and motivation. Diabetic ketoacidosis has nearly killed me a few times. But if I can’t work I certainly can’t afford to live my life as an independent adult.”

Mark Warner suffered three grand mal seizures when his epilepsy, which had mostly been in remission for 23 years, resurfaced. His spine was fractured in multiple places, and he believes that he also suffered a traumatic brain injury, impacting his memory and concentration. The aftereffects—which included more seizures—never fully stabilized, and Warner eventually lost his job as an IT data analyst for a major hospital system. He also has Crohn’s disease, which he left untreated for years due to the high cost of medication.

“The only reason we’re still in our home right now is that I cashed out my pension when I switched jobs the year before I had three grand mal seizures,” Warner says. “My wife subsequently took out a hardship withdrawal from hers. We also ran a successful GoFundMe last year to give me one more year to find a job before we went back into foreclosure when those resources ran out. We were very lucky last year and received a lot of support, but I still haven’t been able to find work.”

Since then, he’s applied for 8,000 jobs and been on 68 job interviews, but he’s still unemployed. His wife, Chris, struggles to support the family on her nursing salary; his two daughters—one of whom is also living with Crohn’s as well as a blood-clotting disorder—are still in school; and the feral cats that the family cares for aren’t exactly paying rent. They’re now raising more money to avoid foreclosure on their house. As of January 22, they’ve raised $38,845 of their $215,000 goal. It’s not enough, they have no other backup plan, and the banks are circling like a pack of hungry vultures.

“My wife and I are introverts. We haven’t got many friends. We’re not involved in a church community. I’m estranged from most of my family, and hers can only help so much. We have no support network that can help us with a problem this big,” Warner wrote on their Plumfund page, echoing the plight of so many others. He ends his summary with a desperate plea to the gods of crowdfunding: “Please, success DEPENDS on this campaign going mini-viral, so PLEASE share!!!!!!! Thank you!”

There’s no easy way out of this mess, though there are bright spots: increasing support for Medicare for All and for expanding healthcare in this country, as well as for reforming the pharmaceutical industry and taking it to task for price-gouging. The “screw you, I got mine” rhetoric that has characterized Republican obstruction of healthcare reform for more than a decade has, in a cruel irony, left many of the white working-class people who make up the party’s base scrambling to afford basic medical care. And had the GOP not leaned so heavily into branding any kind of socialized healthcare as a way of forcing you to pay for other people’s problems, crowdfunding might not even exist in its current form.

In addition, young people are increasingly turning against capitalism, a sign that more folks are beginning to recognize that our flawed economic system is the bedrock upon which so many current societal issues and inequalities have been constructed. There’s a reason so many young socialists like Alexandria Ocasio-Cortez are running for public office—and winning. The future is still murky, and for now the crowdfunding economy is making a positive material impact on some people’s lives. But slapping a Band-Aid on a bullet wound is no substitute for a functioning healthcare system, and just because crowdfunding is becoming the norm doesn’t mean it’s a net good. People living in the richest country on Earth should not have to beg others to pay their bills or risk dying because their funding campaigns didn’t go viral. Fighting to change this broken society we’re living in is the only way forward. Remember: It doesn’t have to be this way.

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by Kim Kelly
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Kim Kelly is a writer, editor, and radical political organizer based in New York City. She's currently an Editor at Noisey, VICE's music and culture channel, and also contributes to various publications, including Al Jazeera, the Guardian, and Teen Vogue. Follow her @grimkim