Introduction

Robert and his partner Lisa saw their lives change in an instant when they learned Lisa had terminal brain cancer. At most, the doctor said, she had two years. In the time since her first consultation, Lisa’s brain had swelled and pushed through the opening where the spinal cord enters the skull. The pressure on her vertebrae had paralyzed her from the neck down. Robert, a substitute teacher in the local school system and a part-time professional hockey referee, was already feeling the financial pressure of staying home during her illness. How would they make ends meet if he continued to stay by Lisa’s side until the end? Hospital parking alone was $14 per day, not to mention the cost of rent, groceries, and keeping the lights on at home. He decided to stop working anyway.¹

Some friends suggested that Robert and Lisa ask for help. Robert was reluctant at first. The idea of asking friends and family for money, let alone strangers, was humiliating. But after a second round of surgery, Lisa told him: “Hey, if this thing goes sideways, take the help this time.” Confronting what was sure to be a long ordeal, Robert relented and gave his friends the green light to set up a page on the website GoFundMe. The dollars poured in, and after five months they had raised over $70,000, roughly Robert’s annual pay.² With all the bills, they weren’t out of the woods financially, but they could stop worrying about short-term expenses. They were also able to make Lisa more comfortable by purchasing a communication device—not covered by insurance—since she could no longer speak because of her blocked airway.

When a loved one becomes very ill, practically overnight the choices are excruciating: work to pay the bills and keep a roof over your partner’s head but miss what little time you might have left together, or take time off but risk financial ruin. It’s a helpless and frustrating dilemma. Often the government can’t or won’t help. In that case, unless you have a rich benefactor, the only way out is to ask others for money. It can get the job done, though the money isn’t free. It can come with obligations to those who helped you out. It may feel like an admission of defeat—not to mention the humiliation of putting yourself at the mercy of others. Robert got the money he needed but at what personal cost? Does it work out for everyone who tries raising funds this way? More important, where did this practice come from and why did Robert end up using it?

Mark woke up ready to start a new and exciting chapter in his life. He had been offered his dream job in New York City. All that was left were a few errands and he was off to the airport to board his flight, then settle in at his new apartment. He had been feeling a bit stiff from all the stress of the move, so he decided he would see his chiropractor before the flight. Several minutes into the visit, the chiropractor’s adjustment of Mark’s neck went wrong and the trauma caused a stroke. Mark lay on the floor for several hours before the chiropractor called an ambulance to take him to the ER, where he was misdiagnosed. He survived but with massive neurological damage that kept him from taking his job in New York and forced him to move in with his family. Weak state malpractice laws prohibited him from seeking compensation, and his insurance wasn’t adequate to cover his health-care needs. Because of fear that it would lead the chiropractor to file a lawsuit against him, Mark was unable to publicly raise money for his needs. Seventeen years after the trauma occurred, Mark’s lawyer told him that the threat of defamation suits had passed, in large part because the chiropractor had lost their practice and the ER had been sanctioned for other malpractice events. Full of anger at the system and full of hope that people would support his cause, Mark finally decided to try GoFundMe. In his words, “I had just seen a couple families . . . who posted hard luck stories about people who’d had an injury. The one family . . . their campaign caught fire, and they raised, like, a quarter of a million dollars in two days. So I thought, ‘We have to give this a try.’” Mark tried. He asked for funds to help pay for his ongoing medical care and to make ends meet because he couldn’t work full-time. He didn’t receive a single donation. The humiliation of this defeat took years to shake off. He likened the whole experience to “shouting into that well of sadness, hoping people will see and hear you.”

At first, Tonika thought it was a mistake. She checked to see if it was really her name on the email and then broke into tears. In 2015, at age thirty-two, Tonika had already faced significant challenges. She had dropped out of high school at nineteen and experienced homelessness. She worked and saved as she went back to school, earning a bachelor’s degree and landing a job helping others navigate the education system. She wanted the tools that would help her make more of an impact in the world of education, so she applied to Harvard’s Master’s in Education program. And she was accepted. Yes, Tonika could probably have gone to a similar and equally high-quality program at home in Canada, where some (but not all) of the costs would have been covered. But this was Harvard. The problem was the $71,000 in tuition, fees, and expenses. She needed to show that she would have it within weeks or she couldn’t get a visa. She shared her triumph and challenge with a few friends, who suggested she set up a crowdfunding page on GoFundMe. In a story reported across Canada and the US, the money came in a torrent and she quickly blew through her initial goal. She raised more than $75,000 in total.³

When faced with a tragedy like a house fire, a sick loved one, or a crushing tuition bill, people feel suddenly and completely overwhelmed. How do I handle this? Usually, they do what people have always done in the face of hardship: ask others for help. Although the risks and challenges facing people today are distinct from those in previous eras—seen in the high incidence of diseases like cancer and increasingly severe weather events caused by climate change—individuals and families still turn to familiar and long-standing sources of aid. Many look to family members and good friends. Others seek help from local community organizations and from churches, mosques, synagogues, and temples. Many organize bake sales, yard sales, and 5K runs. No less important are professional charities like United Way and The Salvation Army, which emerged in the nineteenth century and continue to be significant sources of aid. People and organizations like these have formed a reliable, informal safety net in both the US and Canada and in countries around the world. There’s also aid from local, regional, and federal governments, which, as seen during the COVID-19 pandemic, can make a real difference.

But until relatively recently, cries for help were reliant on older technologies like mail, telephone, television, and face-to-face appeals. This changed with the rise of the internet. Increasingly, people in need are turning to a previously unrecognized source—the digital crowd.

Although some of the names have been changed, the stories here are all true; they motivated the writing of this book. In the twenty-first century, people like Robert and Lisa, Mark, and Tonika are finding help among strangers through crowdfunding, a novel form of internet-based charitable fundraising that has received substantial attention since the early 2010s. Crowdfunding involves individuals and groups using dedicated websites to post requests for help with covering costs for any of a variety of reasons. Once a request is posted to one of several public crowdfunding sites, it’s used to solicit donations from other internet users—the “crowd”—whether friends and family or complete strangers.

There are countless examples of successful and highly publicized crowdfunding. A campaign to support victims of a mass shooting in Las Vegas in 2017 raised more than $11 million. A tragic bus crash that killed fifteen members of the Humboldt Broncos junior hockey team in Saskatchewan in 2018 led to $11.5 million in donations. Jennie and Gary Landsman, parents from Brooklyn, New York, raised more than $1.25 million to help their sons, who have a rare brain disorder known as Canavan disease. A COVID-19 first responders fund started in 2020 raised $8.2 million to provide supplies to those at the forefront of the pandemic response. These cases are a testament to how innovative internet technologies can help individuals come together and make a real difference for those going through incredibly tough situations.⁴

Crowdfunding donations can be sought for almost any cause, from replacing a stolen bicycle to building shelters after a hurricane. In practice, however, most requests on crowdfunding sites—and some of the largest campaigns recorded—are associated with costs for health care and personal medical emergencies, as well as children’s educational opportunities after the death of a parent. The online crowd has quickly become a key welfare provider for people affected by life’s tragedies who have nowhere else to turn. Our social safety net has gone digital.⁵

Notes

1. We use pseudonyms throughout the book. This includes crowdfunding users from our interviews, survey, and online data. In a few cases, to honor the lives of specific people, we use real names. Robert is one of our interview subjects, as is Mark, discussed subsequently.

2. Unless indicated otherwise, we refer to US dollars throughout the book.

3. Tonika Morgan’s story was featured by news outlets in both Canada and the US. We draw on reporting from Matchan (2015) and Seth (2015).

4. On the Las Vegas Victims’ Fund and the challenging logistics of disbursing crowdfunding proceeds, see Mosendz and Woolley (2017). On the Humboldt Broncos’ Fund, see Mattern (2018). On the Landsman family and gene therapies for rare diseases, see Regalado (2018). On the COVID-19 Frontline Responders Fund, see Etherington (2020).

5. We discuss the history of the safety net “going digital” in greater detail in Chapter 1. See Sisler (2012) and Berliner and Kenworthy (2017) as a place to start for understanding the contemporary use of crowdfunding to meet health-care needs.