GoFundMe Profits from People’s Pain

Paris Marx: Nora, welcome to Tech Won’t Save Us.

Nora Kenworthy: Thank you for having me. I’m excited to talk with you.

PM: I’m excited to talk with you. You have this new book that digs into crowdfunding, specifically focused on healthcare, which I think is obviously a topic that everyone has kind of come in contact with over the past number of years as these GoFundMe campaigns and things like that get more common, but it’s not often something that really gets talked about we talk about in the broader consequences of this sort of discussion. And so when I read the book, I thought that this would be a great discussion to have. And so I was just wondering to get us started, how was this a topic that came on your radar and something that you decided that you wanted to dig into further?

NK: Thank you. I sort of think of crowdfunding these days as the kind of ultimate Tech Won’t Save Us story. So I’m glad to be chatting with you. When I started this project almost a decade ago, most people had not heard of platforms like GoFundMe. I remember sort of awkwardly trying to explain to people what this thing was. It was so unknown that one of the common ways that people actually popularized or sort of spread the word about their fundraisers was actually GoFundMe would give them like an option to put print out a flyer with like little tear-off tabs at the bottom, and then you would kind of post it around your neighborhood.

And that was actually one of the first times that I encountered GoFundMe was actually through a flyer in my neighborhood. And at the time, I was working on a different book and welcomed the distraction of going down this rabbit hole. And once I started looking, I realized how many of these campaigns were for really significant medical crises. And as a medical anthropologist, as a public health person who thinks a lot about how people access care, I just became really interested in what was happening here. I wanted to know more about: Was it successful for people? What were they finding there? What was causing them to turn there in the first place?

I also have a lot of experience with other kinds of charity and philanthropic ways of providing health care. And so I’ve seen some of the kind of underbellies of those systems, the kind of feel good veneer of such systems can often give way to some really problematic ways that we talk about who’s entitled to care and who’s not. And so I was kind of coming into it with that frame and really curious to understand what was pushing people into this economy and also what they were getting from it.

PM: And you can definitely feel that in the book, that concern about the broader implications of this model, who is actually benefiting from it, whether it’s actually addressing these broader concerns? I was surprised in the book — you even had a picture of one of these kind of flyers with the tear-off things. That was not a part of this history that I was even aware of. When GoFundMe came on my radar, it was definitely past that era, I think, where people were relying on something like that. So that surprised me just to see it in there.

And you talked about running into this about a decade ago, when you started looking into GoFundMe. When do these sort of digital crowdfunding platforms really emerge? Because obviously providing help to people in your community, families or friends is an age old sort of thing. But when does this really move online and these platforms start to emerge?

NK: They really all start to emerge in the years after the 2008 financial crisis. And so you see a whole host of new platforms that come up around 2010, 2011. And I think that timing is telling us something about the economy that was emerging in the wake of the economic crisis. You see a lot of gig work platforms; you see a lot of this sort of hustle economy happening. And I very much see charitable crowdfunding in the same vein of this idea that the economy really sucks, but if you hustle hard enough, maybe you’ll make it, maybe you’ll get what you need to survive. It also is interesting to me that you have sort of Kickstarter on the one hand emerging, which is somewhat in that same era, really doing this kind of project-based crowdfunding and then you have GoFundMe and other platforms really emerging to do this kind of charitable crowdfunding and they really do kind of divide and go in different directions.

PM: Definitely. I was interested when you brought that up in the book as well, because I remembered there was this moment where it felt like in the, I don’t know, middish 2010s, I guess, where Kickstarter was this really common thing. And you are always hearing about Kickstarter campaigns and you have media organizations like covering different Kickstarter campaigns: Oh, these people are trying to make this product or whatever. It sounds really interesting. And then that really seemed to like fade off. I feel like you don’t hear nearly as much about that sort of crowdfunding anymore, but GoFundMes that feels like it’s something that has just continued to rise and rise and rise and something that has become a really normal part of our society now.

NK: I always think that one of the early viral GoFundMe campaigns was this sort of joke campaign that a young guy set up for making potato salad. I don’t know if you remember this. He was like: I’m going to make potato salad. And somehow it was like one of those internet things, but I always think, how do we go from like: I’m going to make potato salad to we’re giving millions and millions of dollars to like Kyle Rittenhouse or some kid with cancer? It’s just a very strange evolution of a platform.

PM: Definitely. And it almost doesn’t surprise you that it does come out of like the post-2008. Because on the one hand, you’re having the emergence of tech platforms in general. They’re becoming larger. They’re becoming more dominant. You’re having the emergence of the gig economy, of course, and the Ubers.

And you were talking about this hustle culture of you can make money for yourself. You have all this freedom; you can exploit yourselves in these new ways, basically. And so then, on the other hand, it just seems kind of natural that you would also have the emergence of these crowdfunding platforms, especially at a time, taking advantage of the fact That there are so many people who are struggling in this moment, so many people who are finding themselves in a really precarious position. So of course, the GoFundMes and the other ones are going to emerge to take a cut of that and take advantage of it.

NK: In the book I kind of call it gig begging at one point the same things that shape the sort of gig economy, lack of regulation, you’re kind of on your own, you’ve got to figure out how to use all these new platform tools to your advantage. All of that is also happening on this charitable side as people are sort of competing within this individualized market economy of a charitable giving.

PM: Definitely. And so in the book, you talked to a lot of people who have actually engaged with this platform, right? It’s not just this kind of 10,000 foot view of what is going on with the platform, how it works. You actually talked to people who had really engaged with it. What did you learn about why people turn to platforms like this for health expenses in particular?

NK: The actual talking to people who have had these experiences was what really made me realize that there was a book here because there’s such an incredible range of experiences. And a lot of times those experiences are shaped by the kinds of skills as well as privileges and assets that people kind of bring to their experiences. And I would say that I was really surprised by the way that people’s stories of crowdfunding diverged between the successful, sort of highly privileged story and the story of minimal if no success with crowdfunding.

What I found a lot of times with the unsuccessful stories was that people turned to the platform in times of extraordinary need. A lot of people say things like: We have nowhere else to turn, or we’ve exhausted all other options. And they will put a ton of effort into trying to make themselves sound sort of uniquely deserving, morally upstanding, appealing to these like dominant categories of how we think about goodness in the US, but often only raise maybe a couple thousand dollars if they’re lucky and along with that experience comes some really significant shame, especially I would say for lower income Americans around asking for help that it is just profoundly difficult to stand up and put it out there on the internet that you need help that you have exhausted these options And you don’t have anywhere else to go.

On the other hand with these very successful campaigns I was also talking to people who had a lot of resources. They had a lot of assets. So, for example, I talked to a woman who was a media producer who started a campaign for someone else, a coworker who was also in the media industry. Now, both of them had big Twitter followings. They also had the media outlet that they worked for sort of talking about this campaign and, it went viral very quickly. They raised a ton of money. So they raised more than $30,000. And Chelsea, the woman who had started this campaign, talked about how the success of the campaign was largely due to Danny, as she put it, being a uniquely good person. So she talked about his perception as a good person as even a form of health insurance.

Now, at the same time, she totally disregarded all these other resources, all these other assets that had helped her campaign to go viral, and instead was sort of equating their success as a reflection of Danny’s goodness. And so what I’m interested in the book is some of this kind of moral refashioning that’s happening around equating crowdfunding success with moral goodness, which oftentimes accrues for the most successful and affluent and already well resourced crowdfunders.

PM: There’s a few things that I want to pick up on there, but it’s striking to hear that discussion of that framing of moral goodness or, this particular qualities about you being a form of health insurance, because then you can take advantage of these platforms to get the support that a successful campaign like this has been able to garner. Yeah, it’s fascinating to hear a framing like that.

NK: Yeah, and sometimes like campaigns will go super viral, super successful. And to the point where the people who are experiencing that success are like: Okay, we actually didn’t need that much because they already have a lot of assets and resources. So I talked to another crowdfunding organizer for a campaign for a kind of well known couple that was involved in a car crash and their campaign raised over $75,000 in a matter of weeks. But the couple also had good health insurance. They had some benefits through their credit card for the car crash that covered some of the costs.

And the organizer actually talked about reaching this point with the campaign where they were like: Can we give this back? We almost feel we earned too much. And ultimately, the couple used the money that was raised in the campaign. The wife ended up quitting her job and starting a coffee shop. And, I mean, so for some people, these campaigns are deeply transformative, but not always for the people that are most needy.

PM: Exactly. And what you’re describing there really shows how backward this kind of is, right? Because you have the people who are most in need of help, are most in need of support, are struggling most in society who probably don’t have The resources, both kind of the network and the reach in order to make one of these campaigns successful, but also the communication skills to even be able to put together a successful campaigns that has the right kind of traits and qualities and things like that.

Whereas, as you’re talking about, there are other people who often already have these existing benefits and privileges within society who can much more easily pull something that off because of the networks that they’re in, because of the jobs and the professions that they have. tend to be in and all these sorts of things, right?

NK: Yeah. And I also think as the crowdfunding marketplace continues to expand, it gets harder and harder even for people with those skills to kind of break through the noise. So I’ve definitely talked to folks who are very familiar with this industry who say that it’s just, it’s getting so competitive that even if you do all the right moves and you have all the right kind of people connected to the campaign, they’re still not breaking through. There’s just too much out there now.

PM: Yeah. Do you get an idea of the public mood of the response to these things? Obviously you talked a bit about the individuals who are engaging in them, right? And who are making these campaigns and how they feel about it, this mix of independence and, and also a bit of shame depending on who you are and the situation that you’re in. that you’re talking about, but as GoFundMes become more common and as the expectation to contribute to these things becomes more common. Did you get an idea in doing this research of how like the public more generally feels about both the expectation to contribute to these GoFundMe’s, but also just the increasing kind of societal reliance on this type of crowdfunding?

NK: It’s definitely something that’s come up a ton in conversations around this project. I think as we continue to see a lot of crowdfunding for very acute states of need, and sometimes we’ll even see those types of campaigns go very viral, right? Someone finds a homeless person and decides to help them, and for some reason it goes super viral and we’re all kind of invested in this one person’s story. And yet at the same time, you’ll hear people saying: Really, is this where we’re at as a society? This is what you have to do in order to get help if you’re homeless?

And so I think that pairing of: Okay, this is kind of making me feel good. It’s kind of making me feel like I have something that I can do. And at the same time, it’s also making me feel that the entire system is broken and I feel really powerless in that. I think that’s a very important sort of grounding affect of the entire crowdfunding economy. And you really see that in conversations with people who are both starting campaigns, but also who are facing these kind of weird, difficult struggles over whether or not they should donate to a campaign or which campaigns they should donate to.

And then I think there’s two undercurrents here. The first is a lot of people tell me that they donate because they feel like it could be them next time. Right? We’re all vulnerable in this messed up healthcare system that we have. So that’s the first one. And yet, at the same time, people also tell me about these acute experiences of shame when they do have to ask the crowd for assistance. And some people even told me really sad stories about, for example, their own family members not being willing to share their campaigns because they were like: This is so shameful; we don’t want other people to know that we’re going through this. So it’s interesting to me that those two experiences sit side by side. We’re all vulnerable. It could happen to any of us, there but for the grace of GoFundMe, go we all. And also: No way I can’t possibly do that myself. That’s so shameful.

PM: It’s wild to see that juxtaposition, but also you can kind of understand it in a way as well, right? How we can think these thoughts that seem to be very much in contradiction, but also can make a lot of sense. And I think what you touch on there brings up a point that I think is probably important for us to make is how structural factors force this reliance on digital crowdfunding and how obviously you’re looking in particular at the United States. What is it in US society that is making so many people turn to crowdfunding versus having other ways of addressing these issues?

NK: The obvious answer there is that we just basically don’t have a social safety net for a lot of things that happen to people, and in particular, the out of pocket health care costs for most Americans experiencing health care crisis are far beyond what they can cover with their own savings or means. However, I think there’s also a phenomenon of there are so many, associated costs with being sick or having a crisis in your life, whether that’s finding extra childcare for your kids so you can go get chemo treatments or getting to and from the hospital or the exorbitant rate of parking at the hospital or retrofitting your home for whatever reasons. And a lot of these things just aren’t covered, even if you have very good insurance and they’re not expected. And so I think a lot of people are taken aback, not just by the immediate health care costs of a medical crisis, but also the additional sort of life costs.

And I see those kinds of things happening not just in the US, but also in other places where people are crowdfunding, like Canada. However, I do think there’s a uniquely American thing that’s happening beyond just sort of social safety net infrastructure. And that is the kind of foundational moral architecture, if you will, of both how we approach things like GoFundMe and also how we think about people’s entitlement to assistance when they’re in times of need. And in the book, I talk about some of these particularly pervasive ideas in the US. They’re not unique to the US, but I think they’re particularly acute here around, for example, this kind of like rugged individualism, right? Or this idea of kind of a meritocracy where like the most deserving will somehow win out and everyone else is like, good luck to you. Or the idea that charity programs are largely set up to sort of pick and choose who is deserving of assistance and that not everyone is deserving of assistance, whether it’s based on economic background, or their skin color, or their choices in life.

What’s really interesting to me about this is that those same values that sort of fuel crowdfunding and make people really vulnerable in the United States are also the things that really undermine any kind of efforts that we would make towards a more universal healthcare system. So if you look at the common opposition to things like Obamacare, it’s really, it’s the same set of arguments. It’s: I don’t want to share risk with this person because I don’t think they deserve it, and everyone needs to be responsible for their own health care. And, and so I’m really interested in how GoFundMe is also reinforcing these really kind of deeply embedded ideas that we often don’t take notice of, but actually that very much undermine progress towards more universal health systems.

PM: It makes a lot of sense, unfortunately, if you have all these people who do believe that health care is something that you need to sort out as an individual, that, you have this kind of meritocratic system where you need to be deserving in a particular way. You even talked in the book about how there are quite a number of people in the United States who might be eligible for these public supports like Medicare, Medicaid or food stamps or things like that, but won’t even take advantage of them because it feels like you’re getting help in this kind of shameful way, instead of it being, as you say, part of a social safety net that is there to support people, even if it is a very frayed social safety net, a social safety net with a ton of huge holes in it that are easy to fall through a social safety that’s not nearly secure enough.

But it’s those things that are there to try to support you in these times, and so many people feel that they can’t even take advantage of those things because there is the shameful element of it or, or it goes against, as you say, these very powerful narratives that exist, particularly in American society, but also in a lot of Western societies, I think.

NK: And then I think in the US there’s also this layer of what some scholars have called the kind of racial capitalism or sort of deep racism that gets intertwined with how we perceive social support systems. So for example, Jonathan Metzl has written a lot about why white Americans are so opposed to, for example, Obamacare or other kinds of social safety nets. And he writes about it in a book called “Dying of Whiteness”, which is like, why will people go against their own interests in order to reject this thing that would help them?

And part of what it comes down to is this incredible reluctance to share fate with people of a different racial background and in particular with Black Americans and the idea that as much as I want this thing, I don’t want other people to have equal access to it. And that kind of ethic is also bizarrely embedded within crowdfunding in that kind of hyper competitive model.

PM: It just makes me sad to hear that to think that a whole society would be held back from having this material progress that would help so many people because you don’t want Black people and people of color to have it as well because of these very deep racist ideas that exist, within American society and many other societies, but I guess some other ones have been able to overcome that to still get the degree of social programs that we have. It makes me think back, of course, to the demonization of, of the welfare queen decades ago and how those narratives still exist today and are still kind of embedded in these narratives that you’re talking about, but might be kind of abstracted a little bit more that might not be so clear out there.

And it also brings to mind a story that you talked about in the book where there was a man who I guess he was more for Republican or a conservative or whatever, who had launched one of these crowdfunding campaigns, Luis Lang, I believe you referred to him as in the book. And people who are supporters of Obamacare basically got in the comments of his GoFundMe and criticized him for the fact that he was trying to raise money for this medical situation that he was dealing with when actually he had been ineligible for the Affordable Care Act and the Obamacare program. Sure, he was critical of it, but it wasn’t that he just outright rejected it and said: I’m not buying this thing that I have an option for. It was he actually fell in one of these Ineligible spots. He fell through these holes, but then there were a lot of people who I think often present themselves, as you’re saying, like being supportive of these social programs and things like that, who just went after this man, and that really stood out to me.

NK: His story was a really important one for me to tell. He was actually one of the early people to go viral on GoFundMe, and he went viral for all the wrong reasons and became this fodder for left-wing bloggers to talk about what they saw as the sort of misunderstanding or even dare I say, stupidity, of red state people who refused to sign up for Obamacare and he really got dragged through the mud and yet half of that wasn’t true. And what I wanted to use that story to point out is that liberals are also prone to doing this, to making these judgments about deserving this, about other people’s decisions, about other people’s circumstances, and that, in particular, a crowdfunding platform can kind of incite or fuel those kinds of decisions, regardless of what side of the political spectrum you’re on.

PM: I think it was a really important observation in the book, especially to not just make it seem there’s this one side of people who are totally in support of doing all these positive things and this other side that’s against it and how there’s these nuances in how people approach these issues that are not just existing in health care policy and how people respond to it, but that are also present in crowdfunding and so many of the other, issues that are important when we think about how we’re going to solve this broader problem, I think.

NK: Because I think ultimately, if we’re going to change the sort of broader systems of social support in our country, we’ve got to reckon with, we’ve got to get willing to talk about the knee jerk ways that we think about caring for other people and sharing solidarity with them and how messed up it is in the US on many sides of the political spectrum.

PM: Definitely. There’s a lot of conservatives I don’t agree with, but I would still want them to receive health care, when they need it, and not have to worry about that. You talked a bit about how this is something that is particularly relevant or particularly needed in the United States because of the state of the social safety net. You mentioned in the book that it’s not that GoFundMe doesn’t exist in other countries and that there aren’t people using it in healthcare situations, but did you notice any particular differences between how it’s used in the United States and other countries because of different social safety nets and things like that or is it quite similar?

NK: It’s quite different, especially if you compare the US with other, I would say, high income countries that have better healthcare coverage. In places like Canada or the U.K., where we do know that there are significant and growing gaps in that healthcare coverage or that safety net, we do see increases in crowdfunding to meet those needs. However, for example, last summer, I was on a fellowship with colleagues in Norway, and no one could wrap their head around this. They were like: What is this thing that you keep talking about? This makes no sense to us. And they were just horrified. But what’s really interesting to me is that in other places where you have these market-driven healthcare systems, where people carry a lot of costs out of pocket, which is the majority world, you see thriving crowdfunding marketplaces and platforms being set up.

So China has an enormous crowdfunding marketplace. India has a number of platforms. Kenya has very long had a lot of platforms. I often have had conversations with patients from sub-Saharan African countries like Nigeria and Kenya that have these pretty market driven systems where even notoriously, patients will sometimes get held in the hospital until they can actually pay off their medical debts or their medical bills. And it’s very, very common to have crowdfunding campaigns, either on formal platforms or also through WhatsApp networks. We also saw a ton of crowdfunding in South America, in places like Venezuela, associated with economic crisis. So it really is a global phenomenon.

I come to this work with a background in global health, so I’m very interested in the global aspect of it. But I also wanted to kind of turn that lens on the US and really think about the US as a site of global health, both its good and its bad because in many ways, these technologies are coming from the US. They’re being exported to other countries, as is the sort of market driven health care model that we’re also exporting to other places.

PM: That’s really fascinating to hear because it makes me think as well about the transition from traditional crowdfunding or people asking their networks for support in a time of need, which is something that has been around for a very long time and moving that over to digital crowdfunding and how it actually changes it. Do you have any observations on that front? And particularly if you have any observations about. how that transition has worked in the United States and the differences between kind of traditional crowdfunding or non digital crowdfunding versus using these platforms. And also, if you see any difference internationally and in other countries between those two things as well.

NK: I have a lot of thoughts on that. I’ll try and keep them organized. So I do think that something different is happening when people start relying on these large scale platforms to respond to need. And part of what’s happening is that they are becoming sort of inculcated into a moral economy of online crowdfunding that they then must sort of appeal to. And so there’s a lot of sort of like writing for broad audiences rather than just like talking to friends and family and having these more private conversations of like: We’re really struggling to pay rent this month. So for example, crowdfunders told me really interesting stories about parts of their stories that they withheld, even from close friends and family, because they were doing this kind of very online type of crowdfunding.

But then I think the other thing that’s happening here is crowdfunding is built to travel. The idea behind these campaigns is that they’re supposed to move quite quickly across multiple social media platforms. And so users don’t have a lot of control over how they move. And they also are at the mercy of the algorithms and platform dynamics of not just GoFundMe itself, but Facebook and Twitter and Instagram and Reddit and all these other platforms and all the kind of bizarre ways that content is moderated and amplified within those ecosystems. And so you do see a lot of the existing social media dynamics of influencer economies and what is popular and what travels, all of that kind of comes together to rest within crowdfunding campaigns themselves.

PM: That’s so fascinating to hear. The other piece that really stood out to me, of course, is, you’re talking about how it travels, you’re talking about how, you have a very different kind of focus when you’re trying to do this kind of digital crowdfunding versus talking to your network and just seeing if you can get support in a time of need. But then, of course, there’s also the incentives of the crowdfunding platform where GoFundMe is taking a percentage of that and there’s all these structures around it, too?

NK: It’s important for people to recognize that these are for profit platforms. And they make a ton of money off of people’s moments of crisis. And also, we don’t know much about how they’re making money. So we know they take a percentage cut and they ask for tips. But we also don’t know things like what do they do with all this data? It is reams of people’s very personal data, and we have no idea what they do with it, how they sell it, where it goes to, because these are privately traded companies. We just know very, very, very little.

PM: Wow. I hadn’t even considered the data angle of this. They must know so much about so many people and like what they do in times of crisis.

NK: I’ve always thought that probably GoFundMe is better able to identify cancer clusters in the United States than any other data source, right? But we don’t really have access to it.

PM: Wow. Probably. I was wondering as well, when we’re talking about the structural nature of crowdfunding, what does one of these successful campaigns actually look like? And how does that differ from a campaign that might not be as successful? How are these things designed to appeal?

NK: Some of it’s design and then some of it’s in the characteristics. So I think in terms of how they’re designed, savvy people who are starting crowdfunding campaigns will do things like make sure that they have a core network of donors who are lined up ahead of time, who are ready to share the campaign. They’ll probably line up a large number of donations ahead of time so that the campaign launches kind of already trending. They’ll do a lot of cross-media promotion. There’s a big role for news media here. So a lot of people talked about how getting your campaign into the local news or something is actually a huge contributor to success.

But there’s also some innate characteristics of what appeals online. So I kind of talk about this shift in the crowdfunding marketplace from the classic idea of the deserving poor to this new kind of crowdfunding driven idea of the deserving popular. So like what is popular here? So for example, if we look at the most popular medical campaigns and GoFundMe, and some colleagues and I did this a couple of years ago, we took every campaign that had raised over a hundred thousand dollars for medical needs. The most common type of campaign among that kind of rarefied group was a campaign for a white, more likely to be male, young person with cancer. And in particular, racial minorities, older people were just like vastly underrepresented. So in that group, we could only find five campaigns that were for Black women, and two of those were actually started by white people on behalf of Black women. And so I think at that level, you see the really substantial dynamics of racial discrimination that so many communities have been telling us about in terms of their online experiences for decades now. It’s just that it gets further amplified here.

PM: I think it’s so important that you point out those dynamics of it, because this is clearly at play here and we can see it when we look at so many of these crowdfunders and just in general, like how the digital world works just on its own. But I wonder as well, with these crowdfunding campaigns, there’s obviously the racial aspect of it, where there are people who are more likely to contribute to people who are like them and, might have much more even explicit racist thoughts when they see a Black campaign and have some merely negative and disgusting ideas that come along with that.

But then the other piece of it I wonder is, as well, are a lot of these kind of white campaigns that do well also because the types of networks that are engaging with these things are more likely to be doing this kind of digital crowdfunding and to be used to these sorts of technologies? Whereas some of the Black people who are making these campaigns, the type of people in their network on the one hand might not have the resources to contribute as much, but also the familiarity — is that part of it too? Or am I overplaying that aspect of it?

NK: No, no. It’s a really complex set of factors, right? Because some of this is about interpersonal bias, and some of this is about the kind of resources that we have within our networks. I think even more than who in your network has internet on their phone or whatever, I think it’s actually about the wealth that’s embedded in your social network. So what we know in the US is that higher-income, whiter people tend to have more people in their network that look like them and have the same income as them and because most crowdfunding is tapping into a known network of friends and family and acquaintances, you’re tapping into people who are like you. And so those people can give more and they can give more frequently. And so I think because crowdfunding really relies on just those kind of monetary donations of assistance, it kind of amplifies that difference in these different kind of economic groups in terms of what people can contribute and how they can support each other.

PM: It almost seems like it encourages people to encourage their networks. If they’re going to support them in some way to make those donations through a platform, so it shows up in the campaign, so it helps to increase the amount, even though a percentage of that is going to end up going to the platform itself, rather than doing some in-kind support or just giving you some money, some cash or something like that, because then it doesn’t show up in this broader campaign, and it doesn’t contribute toward this broader narrative and help it to spread and get other people to contribute and all this sort of stuff, which I guess is like a digital thing more generally, like we’re always encouraged to do these things online and in these ways that are recordable for these platforms. But, it seems even a bit more perverse when it comes to like a GoFundMe.

NK: Well, I think it’s also overriding other ways that we provide support to each other and making it less visible. There are so many ways to support someone who’s going through cancer treatment, whether that’s bringing them food or helping them negotiate their medical bills or driving them to the hospital or taking their kids on a weekend so they can get some rest. There’s so many other ways and all of that becomes invisible when GoFundMe is the way that we’re supporting someone. And so in the book, I talk also about this kind of like weird knee jerk thing that we do now, like when anything bad happens that like GoFundMe is the answer. I just need to give five dollars to them on GoFundMe and we’re good.

And so, for example, scholars like Lana Schwartz have talked about how these small transactions of money online have become increasingly important to how we identify our online communities and ourselves. And that used to not be the sort of currency of internet interaction. But now it is. So, for example, in the wake of all of the racist police violence in 2020 and all the demonstrations that were happening, I write about this bizarre phenomenon of people kind of giving small amounts of money to their Black friends and what that means. We see a similar thing with like a lot of school shootings with people just sort of like knee jerk donating to the GoFundMe afterwards. And it’s not that that doesn’t maybe provide some kind of help. But I’m more interested in what does that mean to us as givers? What are we trying to do there? I think we’re trying to alleviate guilt and our sense of powerlessness. But I think also having that like one click as the CEO of GoFundMe calls it, the Internet’s take action button. It just makes it so easy and mindless for us to do that, but not do other things.

PM: As you describe that, it makes it seem like: Okay, you can give this little bit of money, then you don’t need to worry about the broader implications of this issue or this problem anymore because you’ve done your little part. So now you don’t need to fight for a bill that’s going to change this or fight for a universal health care system or restrictions on gun regulation so that there’s not these school shootings in the first place. You’ve alleviated your guilt or sense of what participation you’ve kind of played in this broader matter because you’ve given this a little bit of money. And so you’re kind of done at this point

NK: And I think it’s good for us to think about like what gets lost when that’s our way of responding to people’s crisis or people’s needs or bad things happening. And I think part of what gets lost is our opportunities to build community and build political power, because none of that, if you’re giving to the victims of a school shooting, you are doing nothing to prevent the next one, but you’re also not forming any relationships with anyone else who might care about this as an issue. It’s a very unilateral, individual action, oftentimes that doesn’t connect you to any broader movements. And so what scares me, as someone who thinks a lot about solidarity and political power and how we shift the needle, is that I think we’re losing some of the opportunities for more political organizing every time we turn to this as our kind of reaction to crisis.

PM: It makes me think more broadly as well about how these digital platforms encourage this sort of individual action, whether it’s donating some money or like retweeting some stuff about a particular cause.

NK: Or like sign the petition.

PM: Exactly. And then that kind of alleviates you of this sort of guilt in a way, I guess, but also, you don’t need to go for a march or participate in some political organization or something like that, because you’ve done your little part. And it feels like that kind of in the long term, then erodes efforts, collective efforts to actually solve these issues in a much more structural way or improve the society that we live in.

NK: Yes, I mean, I truly believe that the fabric of solidarity is all about relationship. And so I think that when we rely on tools like GoFundMe, we lose the skills of building relationship in those messy, complicated, long-term ways. And we know that those things are not just the sort of fabric of political movements, but also the terrain of how we support each other in community when bad things happen. And so I, in the book, I’m trying to kind of contrast, for example, the typical way of using crowdfunding with some of the more kind of mutual-aid efforts that we saw emerge during the pandemic, which really relied on this like relationship building this intensive sort of like non hierarchical, like meeting people where they’re at. Yes, but also building the kinds of social infrastructure that’s needed in order to make these larger changes.

PM: Which is a really important point to make. And you mentioned the pandemic there. How did you see COVID change or alter the way that these crowdfunding campaigns or their reliance on them worked?

NK: COVID was wild. I think even before we had cases of COVID in the - we were seeing an uptick in COVID related crowdfunding campaigns. And then once things hit the U. S. And especially once there were sort of stay at home orders, it just shot through the roof. And that, in part reflects, the really minimal early US response in terms of helping people out financially who are impacted by the pandemic. I kind of mark 2020 is the point at which we started to see a really large number of campaigns for very basic needs, like I can’t feed my kids tonight, or I need rent money or I’m being evicted. And at the same time, as we saw that enormous rise and sort of basic needs campaigns, those campaigns also were the least successful.

So during those early months of COVID, more than 40% of COVID related campaigns got 0 in donations. And what we also saw at that time was this really growing a very small percentage of campaigns that were incredibly successful. So these multimillion dollar campaigns happening at the same time as you have this large portion of campaigns at the bottom that were earning nothing, which of course is a mirror of our entire economic system of the 1% and the 99% in the United States.

PM: And it feels like the way that the digital world, however we want to refer to it, is set up, is designed to kind of amplify those things. Because a small number of people go viral, and because these platforms, reach so many more people, have this global or at least regional scale, then these successful campaigns or influencers or whatever, can reach so many more people and they get all the benefits of that growth and the economic benefits, whatever we want to call it in crowdfunding in particular, the donations that come with it, whereas you just have so many of the other people who are trying to use these same platforms in the same way, but don’t get nearly the benefit that very small amount of people who go super viral get.

NK: What was also interesting to us during that moment was, we started noticing that GoFundMe as a company was also lending substantial support to specific campaigns. And so they were seeding certain campaigns, sometimes to the tune of like 50,000, kind of putting their own hand on the scale of what was going to go viral. And oftentimes they were working with sort of celebrity influencers to either start or stimulate campaigns that they felt would be particularly good to their brand and sort of show the company responding to this moment of crisis.

PM: You mentioned in the book, this quote from GoFundMe, I can’t remember if it was just on the website or kind of one of their executives or something, or CEO basically said: “We’re in a growing industry: pain,” to show how this company really benefits. And in the book, you talked, of course, how the GoFundMe itself was founded in 2010 and through the 2010s, I think like we’ve seen with a number of these kinds of digital platform companies was aggressive in acquiring its competitors in order to try to have a dominant position in this marketplace. What do you make of this company itself and how it’s pushing this crowdfunding model and what the kind of broader consequences of that are?

NK: I’ve been really interested in the question of like, sort of what is GoFundMe is end game. Like, where do they want to be? What’s the plan? We don’t get a lot from the company. And that quote that you mentioned is actually something that was written on one of the campaigns that they helped start during the pandemic. And I actually thought it was a kind of rare moment of honesty. I’m not sure if that was a sanctioned message from the company. Oftentimes they want to put out more positive messages.

So, we’re in the business of helping people or we’re the internet’s take action button. They put out these like glitzy sort of beautiful feel good videos every year to celebrate a year in giving and yet they keep getting associated with these horrible moments, in especially American history, whether it’s police violence or school shootings, or more recently they’ve been involved with some really nasty kind of far-right type organizing. And I think that there’s a real tension at the company in terms of what their brand gets associated with. And so we actually have heard the CEO of the company say things and write things like: We’d really prefer if people weren’t crowdfunding for basic needs and if like the government did its job so that we could use this platform for something else.

So, for example, Tim Cadigan had an interview with Kara Swisher in which he was like: I really just want people like use this for like soccer teams. And Kara Swisher kind of said: Yeah, no, that’s not the world we’re living in. But I think there’s a sort of line that the company is towing between sort of like: We realize that this is what people are using it for. And yet, that’s really super depressing guys. So maybe stop doing that, but also this is the economy that they’re stuck in.

PM: Also don’t stop doing that because this is how we make our money. And if the government did actually provide the social safety net that people don’t have, all of a sudden our business would go away.

NK: Exactly. Yeah. And also I don’t think that this is necessarily what the end game is for them. So when you look at what the company says, they, for example, talk about their ambition to become the one place on the internet where you go when you want to give something, whether that’s to another person or to a nonprofit or whatever, wherever. So you see them increasingly doing very large partnerships for larger charitable initiatives. So for example, during the war in Ukraine, GoFundMe was actually one of the primary ways that money was getting from the US into Ukraine, so much so that the US State Department like partnered with them in order to transfer funds to Ukrainians.

So I think there’s a broader objective here about how GoFundMe wants to rewrite the sort of architecture of charitable giving, not just in the US, but around the world. And if you think about how much giving is now driven by data and by personal information, they’ve got a lot of it. And they have a lot of it that they can sell back to organizations that want to do that fundraising or that want to transfer funds in these kind of complex ways, like, for example, between the US and Ukraine.

PM: It’s probably a bit of like a side point, I guess. But that example that you give brings to mind a lot how the United States seems to do this quite a bit, like using GoFundMe for this assistance in Ukraine. I remember when under, I guess it was, the Obama administration, they were starting to open up to Cuba and they facilitated the entry of Airbnb and Google into Cuba. And there’s a lot of this using the tech platforms for this kind of assistance or these projects that whether it’s the State Department or these other kinds of arms of the US government is trying to carry out.

NK: Yes, I think we have a very cozy relationship with kind of tech platforms as a mode of diplomacy, and increasingly we’re really seeing that in the health sector. So as the US is pushing health aid into other countries, they’re largely using those countries as a testing ground for a lot of US health technologies and emerging platforms.

PM: Wow. It’s probably something worth looking into more. And I guess my final question is basically on that point, because one of the bigger points that you make in starting to close off the book is really how GoFundMe is an illustration of how we use technology as a fix for these much deeper, structural and political problems that we see. And we act as though if we just have more tech in this particular sector or this directed at this particular issue, then we can then that is going to address it. And we can kind of step back from the more structural fixes that we’ve been talking about being necessary. I guess, what is the consequences of that particular view of how we solve these really extreme problems that we have in our societies?

NK: I don’t think this will be news to listeners of this podcast in particular that like tech is not kind of fixing these larger upstream problems, but I think it is a point that needs to be made for more people in the health sectors in particular, which I’ve had a very cozy and uncritical relationship with technology by and large. And so when we look at those types of technologies and where they’re targeted, where the aim is, a lot of times, much like GoFundMe, they’re really aimed in terms of what we think of in the health field as downstream interventions. So people are already sick. They’re already in crisis. Let’s catch them. And it’s super resource intensive, but it feels good.

And so we’re going to do this act of saving, whereas our resources are far better spent moving upstream and trying to fix the reasons that people are falling into this kind of stream of ill health in the first place, whether that’s helping people avoid medical debt, which is pennies on the dollar compared to what you get in terms of crowdfunding or funding more preventative community health interventions, as well as, of course, advocating for better healthcare infrastructure and change.

But a lot of times, a technology like GoFundMe is not taken seriously in the health field as a health technology. And part of what I want to do with this book is to get people thinking seriously about social media or platforms like GoFundMe as health technologies and to think critically about what do they bring us and what do they not bring us and like: What are they doing to us as patients, as societies connected to patients and how are they changing our health futures?

PM: And I think you’ve done a really good job of that in this book by really digging into it and giving us this really critical, but also enlightening picture of what this crowdfunding ecosystem looks like and how it doesn’t solve these problems that we’re trying to address, ultimately, if we were thinking about what a better system looks like rather than the reliance on this crowdfunding, what would that look like?

NK: Well, at the end of the book, I do three different thought experiments because I don’t think there’s one answer. And part of what I’m trying to point out to people is that it’s a particular condition of both the tech industry and kind of neoliberalism to blind us from thinking that there are any alternatives. So we’re really conditioned to not think about meaningful alternatives. And so I want to think about those alternatives at different scales. And so first I think about like, what would it take to sort of like tweak these platforms in order to make them slightly more equitable? Ultimately, yes, there are things we could do. There are things that the platforms could do. I don’t think that they’re going to solve the problem necessarily, but they could make it slightly fairer.

The second thing is under what conditions would crowdfunding actually become less ubiquitous or actually kind of out of vogue. And I almost think of under what conditions does GoFundMe become MySpace? And I find that a useful thought experiment, because we do know that platforms become outdated. They become not part of the zeitgeist. And so I think that one of the conditions that would yield to that is, I think, first of all, a growing awareness of the inequities of these platforms and the inequities of our health system in general, as well as changes to our health system to ensure that people are not discriminated against relying on this as the kind of last ditch effort before medical debt.

But then I think we also need a blueprint for how we live in the meanwhile because this is really slow long term work that we hope will be successful. But it’s an uphill battle. And so I also point to the work of, for example, community organizers and mutual aid organizers and these long histories of really critical social justice informed community organizing around health in the United States as an alternative to crowdfunding. And that doesn’t mean that these types of efforts can’t rely on crowdfunding. It’s a tool, and so it matters how we use it. But we’ve got to move away from thinking about crowdfunding as the answer to our problems, rather than just like a tool that we can employ in broader efforts of community organizing and social justice efforts around health.

PM: And most importantly, those solutions are not focused on which technology do we need to roll out in order to solve this problem, but what kind of political movements or social forces do we need to solve it? And how can technology be used to help that if it can at all? But it’s not kind of the center or the goal at the end of the day. Nora, this has been fantastic to speak with you. The book was really great, but to learn more and talking to you has been fantastic. Thanks so much for taking the time!

NK: Thank you! This was great. I really appreciate it.