Go Fund Us? an Interview with Professor Lauren Berliner
Interview by Nick Ferreira
Paul Smith (nothing to do with healthcare, originally featured in the mag though :)
photograph by Joshua Lucero
photograph by Joshua Lucero
When I first donated to someone’s GoFundMe medical campaign, I thought it was an innocent idea: Someone is in need and they don’t have enough money to pay for it. Seems like a no-brainer. But as I began to think about this concept of a private web site acting as a safety net for healthcare (not to mention the countless other types of campaigns, but we’re talking medical here), it all started to feel incredibly troubling and confusing.* Luckily there’s people out there researching this stuff. People like Professor Lauren Berliner, a faculty member at the University of Washington Bothell. Berliner works in the area of critical media practice and with the anthropologist Nora Kenworthy, co-authored the paper, “Producing a worthy illness: Personal crowdfunding amidst financial crisis.” This paper, published August 2017 in Social Science & Medicine, discusses things like media literacy, the idea of “deservingness,” and how GoFundMe perpetuates the inequality of the US healthcare system. Professor Berliner talked with me about her research and how it intersects with our small world of BMX.
Challenger:
One of the things you discussed in the article is this idea of “deservingness.” What is deservingness and what do you think some of the more troubling aspects of deservingness are that came up in your research?
Lauren Berliner:
In general the idea that we are bombarded with so many campaigns at this point. Our attention is just not split amongst medical campaigns. On social media we have campaigns competing for lots of different issues. You might have one on your feed looking for funding for medical or another one that is really compelling for car repair funds. It’s not like you are only comparing medical campaigns when you are thinking about deservingness. In talking to crowdfunders and looking at the ways in which people write about their needs in crowdfunding campaigns it became very apparent that people are trying to frame themselves and their stories as deserving of funds. We live in a country in which asking for money is often associated with shame and self-sufficiency and the “bootstrap mythology” really prevails. When you have to ask for money it’s very hard even if you can point to a million systemic failures to say well, “yeah we actually still really need this.” So people who have very discrete, concrete asks: “we have everything we need but we need money for this treatment that is possibly going to save this child.” The campaigner might be imagining that the reader is looking for reasons why this person should not get the money. Because we hear a lot about fraud in campaigns. And people tend to approach them with a bit of suspicion if they don’t know the people involved very well. And so deservingness is, at least from talking to people who want to prove in the healthcare arena, that they’ve done all they can to take care of themselves, and therefore they are deserving. There’s two modes of deserving: “I am deserving” and then there’s the flip side: “There’s nothing I did to deserve this.” Where, when you think about certain kinds of cancer linked to smoking or sexual transmitted illnesses or other kinds of health conditions that have been linked to stigmatized practices, it’s much harder and we see much fewer of those kinds of cases.
Challenger:
Yeah and that’s part of what I’ve been thinking about in regards to BMX, skateboarding, snowboarding, etc. It’s a risk adverse activity. I think a lot of people think why would I give this person money if they knew what they were getting into. I don’t know if there’s a right answer to this—it seems like a moral question, but also seems like a slippery slope. What’s the difference between someone who went for a run and got hit by a car vs. someone who is riding BMX because it’s healthy and fun?
Lauren Berliner:
When you first contacted us, I had the same thought. You are dealing with a sport that a lot of people would stay away from because by virtue it seems risky. I’d imagine in the realm of BMX related cases, where the person has an injury due to the sport, not if they are in the community and get cancer, but if it’s something injury related. Or, even someone who does have cancer and their goal is to get better so they can do BMX again, there’s a way in which that might potentially be a hinderance for them. But the flip side is that their network and community are people who are part of the community. And probably, I would imagine, from what we’ve seen the more the campaigner ties themselves to an already in place community the more likely they are to get funds because they have that sympathy across networks.
Challenger:
You are completely right. And I think that us something that BMX prides itself on that. Which is really kind of beautiful. I think that’s an aspect of crowdfunding that is quite nice. But to speak to your article and your research, I think it does take away the conversation from the fact that a better health care system would mean we wouldn’t need to be doing this.
Lauren Berliner:
Right or when we talk to people in countries where they do have universal healthcare and the things people are campaigning for are not the actual healthcare. It’s the stuff around it: travel to a care facility, the kinds of nice things to have when you are bed-ridden, travel for family. Not the actual procedures and medicines, etc.
Challenger:
I think that leads to this next question, people talk about shows like Black Mirror and how we are one step away from dystopia. But this idea of self marketing, to me seems like it is already a super dystopian scenario. You have to prove yourself to get your healthcare paid for on a web site that takes 5% of your costs.
Lauren Berliner:
Yes. Well at this point they aren’t taking 5% anymore but they do have this tip model which is super confusing to people, even to myself, and I work on this topic. I was giving to a campaign and it said “Would you like to give a tip?” and when I see “tip” I think of the service model and people who are working class who are trying to get tips on top of low wages and my do-gooder instinct is “Oh yeah, provide a tip” (laughs). And then I thought about it and I thought “this tip is not for the person, the tip is for GoFundMe.” And the word tip—I find the word tip very manipulative personally.
Challenger:
For sure. I donated to a friend’s campaign not too long ago and I thought, "Hell no. Why would I donate to GoFundMe. That seems insane."
Lauren Berliner:
It’s interesting because we are at a point, you mentioned self-marketing, but self-marketing and branding has been increasingly part of our popular culture and our social theatre for, I would say, 10 years with the emergence of web 2.0 and people engaging in different forms of self produced media like YouTube channels and Facebook pages. And so the idea of cultivating a unified brand or expressing one’s values and needs through social media, is something that we’ve been slowly naturalizing ourselves to. So it’s not like crowdfunding comes along and suddenly Bam—we’re self-marketing. We’ve been self-marketing but it’s being applied to different concepts. So the dystopia is part of a larger, I mean there’s so many things connected to the dystopian vision of our world right now, everything from climate change to all the different events happening around the world. This is just one piece. And you can see the ways in which the “goodness of the crowd” or sharing economy is continually pointed to as a way out of social and economic ills. So like “Oh, help the migrants that came through San Diego.” Everyone get behind this with money or send blankets. That kind of approach is super well intentioned and very impactful, most of the time, but that’s where the energy is going.
Challenger:
Totally and that brings me to my last question and I think the problem with a lot of these campaigns is that it continues to undermine these public and social institutions that, I think, should be the things that are taking care of people in a first world country and if they aren’t “profitable” they are the devil.
Lauren Berliner:
I feel like, to that point, in the past 5 years since Nora and I have started working on this project, the idea of crowdfunding has become so popularized to the point of becoming part of most people’s everyday experience. Whereas when we started, we had to explain what crowdfunding meant. It was a very new area.
Challenger:
That’s so interesting.
Lauren Berliner:
Yeah. There’s ways we’ve become naturalized to its existence as a means of survival. It helps to further obscure super abstract areas of our healthcare system in general. So knowing how much your hospital or doctor is going to charge you is generally a mystery until you get the bill. And even when you get the bill it’s still pretty much a mystery unless you track down how much this Tylenol is and the adjustments your insurance company will make, if you’re lucky enough to have insurance, is also really confusing. And most people, if you’re like me, just kind of lean back and go “okay, I’m going to sit and let the bills collect and then figure it out” and so then on the flip side asking for funding is equally abstract. People who set up Go Fund Me’s we talk to are like “I don’t know how much to ask for. We don’t know how much this is going to cost.” Just even doing the math and then deciding what are people willing to give. There’s a lot of economic reckoning people are doing that is not guided by whatever resources are available for people in need or should be available for people in need. But really just trying to dance around or with this really abstract, weird medical care system that does not put people’s health first.
*Big Editor's Note*
In no way would I ever blame someone for using GoFundMe nor do I think it is bad if you make a GoFundMe campaign. I want to emphasize that this is a critique of the US healthcare system and the techno utopia we are often told will save us. I don't know the answers but I'm trying to learn more. Thanks to Lauren Berliner for taking the time to discuss this stuff with me. ︎
Challenger:
One of the things you discussed in the article is this idea of “deservingness.” What is deservingness and what do you think some of the more troubling aspects of deservingness are that came up in your research?
Lauren Berliner:
In general the idea that we are bombarded with so many campaigns at this point. Our attention is just not split amongst medical campaigns. On social media we have campaigns competing for lots of different issues. You might have one on your feed looking for funding for medical or another one that is really compelling for car repair funds. It’s not like you are only comparing medical campaigns when you are thinking about deservingness. In talking to crowdfunders and looking at the ways in which people write about their needs in crowdfunding campaigns it became very apparent that people are trying to frame themselves and their stories as deserving of funds. We live in a country in which asking for money is often associated with shame and self-sufficiency and the “bootstrap mythology” really prevails. When you have to ask for money it’s very hard even if you can point to a million systemic failures to say well, “yeah we actually still really need this.” So people who have very discrete, concrete asks: “we have everything we need but we need money for this treatment that is possibly going to save this child.” The campaigner might be imagining that the reader is looking for reasons why this person should not get the money. Because we hear a lot about fraud in campaigns. And people tend to approach them with a bit of suspicion if they don’t know the people involved very well. And so deservingness is, at least from talking to people who want to prove in the healthcare arena, that they’ve done all they can to take care of themselves, and therefore they are deserving. There’s two modes of deserving: “I am deserving” and then there’s the flip side: “There’s nothing I did to deserve this.” Where, when you think about certain kinds of cancer linked to smoking or sexual transmitted illnesses or other kinds of health conditions that have been linked to stigmatized practices, it’s much harder and we see much fewer of those kinds of cases.
Challenger:
Yeah and that’s part of what I’ve been thinking about in regards to BMX, skateboarding, snowboarding, etc. It’s a risk adverse activity. I think a lot of people think why would I give this person money if they knew what they were getting into. I don’t know if there’s a right answer to this—it seems like a moral question, but also seems like a slippery slope. What’s the difference between someone who went for a run and got hit by a car vs. someone who is riding BMX because it’s healthy and fun?
Lauren Berliner:
When you first contacted us, I had the same thought. You are dealing with a sport that a lot of people would stay away from because by virtue it seems risky. I’d imagine in the realm of BMX related cases, where the person has an injury due to the sport, not if they are in the community and get cancer, but if it’s something injury related. Or, even someone who does have cancer and their goal is to get better so they can do BMX again, there’s a way in which that might potentially be a hinderance for them. But the flip side is that their network and community are people who are part of the community. And probably, I would imagine, from what we’ve seen the more the campaigner ties themselves to an already in place community the more likely they are to get funds because they have that sympathy across networks.
Challenger:
You are completely right. And I think that us something that BMX prides itself on that. Which is really kind of beautiful. I think that’s an aspect of crowdfunding that is quite nice. But to speak to your article and your research, I think it does take away the conversation from the fact that a better health care system would mean we wouldn’t need to be doing this.
Lauren Berliner:
Right or when we talk to people in countries where they do have universal healthcare and the things people are campaigning for are not the actual healthcare. It’s the stuff around it: travel to a care facility, the kinds of nice things to have when you are bed-ridden, travel for family. Not the actual procedures and medicines, etc.
Challenger:
I think that leads to this next question, people talk about shows like Black Mirror and how we are one step away from dystopia. But this idea of self marketing, to me seems like it is already a super dystopian scenario. You have to prove yourself to get your healthcare paid for on a web site that takes 5% of your costs.
Lauren Berliner:
Yes. Well at this point they aren’t taking 5% anymore but they do have this tip model which is super confusing to people, even to myself, and I work on this topic. I was giving to a campaign and it said “Would you like to give a tip?” and when I see “tip” I think of the service model and people who are working class who are trying to get tips on top of low wages and my do-gooder instinct is “Oh yeah, provide a tip” (laughs). And then I thought about it and I thought “this tip is not for the person, the tip is for GoFundMe.” And the word tip—I find the word tip very manipulative personally.
Challenger:
For sure. I donated to a friend’s campaign not too long ago and I thought, "Hell no. Why would I donate to GoFundMe. That seems insane."
Lauren Berliner:
It’s interesting because we are at a point, you mentioned self-marketing, but self-marketing and branding has been increasingly part of our popular culture and our social theatre for, I would say, 10 years with the emergence of web 2.0 and people engaging in different forms of self produced media like YouTube channels and Facebook pages. And so the idea of cultivating a unified brand or expressing one’s values and needs through social media, is something that we’ve been slowly naturalizing ourselves to. So it’s not like crowdfunding comes along and suddenly Bam—we’re self-marketing. We’ve been self-marketing but it’s being applied to different concepts. So the dystopia is part of a larger, I mean there’s so many things connected to the dystopian vision of our world right now, everything from climate change to all the different events happening around the world. This is just one piece. And you can see the ways in which the “goodness of the crowd” or sharing economy is continually pointed to as a way out of social and economic ills. So like “Oh, help the migrants that came through San Diego.” Everyone get behind this with money or send blankets. That kind of approach is super well intentioned and very impactful, most of the time, but that’s where the energy is going.
Challenger:
Totally and that brings me to my last question and I think the problem with a lot of these campaigns is that it continues to undermine these public and social institutions that, I think, should be the things that are taking care of people in a first world country and if they aren’t “profitable” they are the devil.
Lauren Berliner:
I feel like, to that point, in the past 5 years since Nora and I have started working on this project, the idea of crowdfunding has become so popularized to the point of becoming part of most people’s everyday experience. Whereas when we started, we had to explain what crowdfunding meant. It was a very new area.
Challenger:
That’s so interesting.
Lauren Berliner:
Yeah. There’s ways we’ve become naturalized to its existence as a means of survival. It helps to further obscure super abstract areas of our healthcare system in general. So knowing how much your hospital or doctor is going to charge you is generally a mystery until you get the bill. And even when you get the bill it’s still pretty much a mystery unless you track down how much this Tylenol is and the adjustments your insurance company will make, if you’re lucky enough to have insurance, is also really confusing. And most people, if you’re like me, just kind of lean back and go “okay, I’m going to sit and let the bills collect and then figure it out” and so then on the flip side asking for funding is equally abstract. People who set up Go Fund Me’s we talk to are like “I don’t know how much to ask for. We don’t know how much this is going to cost.” Just even doing the math and then deciding what are people willing to give. There’s a lot of economic reckoning people are doing that is not guided by whatever resources are available for people in need or should be available for people in need. But really just trying to dance around or with this really abstract, weird medical care system that does not put people’s health first.
*Big Editor's Note*
In no way would I ever blame someone for using GoFundMe nor do I think it is bad if you make a GoFundMe campaign. I want to emphasize that this is a critique of the US healthcare system and the techno utopia we are often told will save us. I don't know the answers but I'm trying to learn more. Thanks to Lauren Berliner for taking the time to discuss this stuff with me. ︎