Crowded Out Teaching Guide

Many libraries have access to an electronic version of Crowded Out that students can read online. Online versions of the book are provided to university libraries by MIT Press Direct. If you are teaching in the University of Washington system, the online book can be found here. Many local library systems also have hard and electronic copies of the book. 

Free excerpts from the book can be accessed via the following links: 

• What the Toxic Morality of Crowdfunded Healthcare Says About American Society - LitHub 

• How GoFundMe perpetuates the myth that only some people deserve help - Popular Science

• The Dark Side of Crowdfunding Healthcare and its Historical Precedents - HistPhil

Crowded Out is written for a general, non-specialist audience (really!) and does not assume prior knowledge about things like technology or the US healthcare system. The book is about 200 pages, comprised of 6 shorter chapters, an introduction, and a methods appendix. Most chapters can be assigned as standalone readings. Here are some suggestions on how to break up the book into reading segments: 

2 reading segments, approx 100 pages each: 

• Segment 1: Introduction - Chapter 3 (pp. 1-98)

• Segment 2: Chapters 4-6, plus appendix as optional (pp. 99-174)

3 reading segments, approx 50-70 pages each: 

• Segment 1: Introduction - Chapter 2 (pp 1-72)

• Segment 2: Chapters 3-4 (pp 73-122)

• Segment 3: Chapters 5-6, plus appendix as optional (pp. 123-174)

Themes / Learning Outcomes

The book introduces students to a range of ideas about the US healthcare system, health and social inequities, and charitable giving. It introduces and integrates themes like false meritocracies, selective deservingness, digital inequities, neoliberalism and austerity, upstream vs. downstream thinking, racial capitalism, and racism in health systems. 

Potential learning outcomes could include: 

• Identify ways that digital crowdfunding for health exacerbates, rather than addresses, inequalities. 

• Determine the social and market dynamics that make crowdfunding popular for health and social needs. 

• Describe how crowdfunding is an example of downstream tech solutionism.

• Contrast charitable crowdfunding with other alternatives for helping patients access and afford care. 

• In 2022, Jin-Kyu Jung, Nora Kenworthy, and Hayley park developed an interactive, creative geovisualization website to explore inequities in US crowdfunding, called GoFundUS. The website can be used in multiple ways for teaching about the themes of the book. It includes a library of anonymized campaigns like the ones used in focus groups in chapter 4, as well as interactive geovisualization tools, and mapped representations of some of the poems found throughout Crowded Out. In a companion teaching article, we offer information about how and why the website was developed, along with suggestions for using it in teaching and learning activities relevant to the book. 

• I find that using “book clubs” is a fun format for teaching books like this one, particularly in undergraduate settings or disciplines where students are not accustomed to regularly reading entire books for classes. Students meet in small groups in person and/or online to discuss the book from week to week as they read it. I meet with each small group to discuss emerging themes about halfway through their progress in reading. At the end of the unit, each book club presents an in-depth oral presentation on a chosen theme from the book. Possible themes include: false meritocracies, selective deservingness, digital inequities, neoliberalism and austerity, upstream vs. downstream thinking, racial capitalism, and racism in health systems. 

• Ask students to bring in an example crowdfunding campaign and talk about how it resonates with (or contradicts) various themes in the book. What are the upstream factors that might be influencing this campaign's circumstances or success? Are these adequately visible / represented in the campaign itself? Why or why not? Consider having students 'rewrite' the crowdfunding campaign in such a way that explains and elaborates these more invisible elements. Examples for how to do this are on the GoFundUS website. 

• Encourage students to engage with the challenge of "living in the meanwhile" (from the conclusion) in their own lives. What are the rewards and challenges of intentionally creating solidaristic means of living in a time of polycrisis? This could involve writing more personal essays about what this looks like for them, or interviewing people in their communities that are engaged in this work. It could also take the more active format of engaging in developing / building projects of 'living in the meanwhile' on campus or in their communities. 

Chapter overview: 

The Introduction uses stories from patients like Emily and Trevor to introduce the idea that what we think we know about crowdfunding for health care, and what it's really like, are different things. It provides a brief description of the origins of crowdfunding and a short overview of the research project that led to the book. 

Chapter 1 looks at how the uniquely market-based and exclusionary US Health and social safety net systems have led to crowdfunding's popularity, and its necessity. It introduces some of the financial toxicities that drive people to rely on crowdfunding, and shows how crowdfunding reinforces the free market ethics of these health systems. 

Discussion questions: 

•  In the introduction, the author explains that Crowded Out is organized around a series of questions about crowdfunding, and uses these to highlight "moral toxicities" that crowdfunding reinforces. What questions do you have about crowdfunding that you hope the book will answer? Find one of the "moral toxicities" mentioned in the introduction; can you think of some examples of how this toxicity shows up in life, society, or politics in the US? 

• Chapter 1 delves into how aspects of the US healthcare system have given rise to a situation in which medical crowdfunding is popular and necessary. What are some of the hallmarks of this system that the author highlights? Do these resonate with your own experiences of the health system, and if so, how? 

• Kenworthy highlights exclusion and resentment as key political-cultural forces that undermine efforts to equitably expand health coverage in the US. Do you agree with this assessment? What other forces might be important to consider as well? 

Supplemental readings / media / resources: 

• Ted Closson's comic about crowdfunding, "A GoFundMe Campaign is Not Health Insurance," offers a beautiful, haunting story about crowdfunding for insulin and what it reflects about US society.  

• Health and Wealth, a "graphic guide to the US healthcare system," is a wonderful (short) accompaniment to Chapter 1, and is free to download. 

•  For those wanting a longer introduction to the US healthcare system and some of the dynamics discussed in Chapter 1, the following are recommended: 

  • Medicare for All: A Citizen's Guide, El-Sayed & Johnson. 

  • Unequal Coverage: The Experience of Healthcare Reform in the United States, Mulligan & Castañeda

• The Podcast Death Panel has a number of episodes on exclusion and inequity in the US health system, such as this very applicable conversation with Dr. Victoria Dooley. 

Chapter overview: 

Chapter 2 explores the ways that crowdfunding platforms derive from, and further amplify, a long and troubled history of selective deservingness in deciding who is and is not entitled to help. It begins to explore the inequities between campaigns that succeed, and those that do not. 

Discussion questions / learning activities: 

• Chapter 2 introduces the moral toxicities of "meritocracy" and "selective deservingness" to readers as foundational concepts of crowdfunding as well as earlier forms of charity. Think of some other examples of how these moral toxicities show up in online spaces or charity campaigns. 

•  In the section "spectacles of selective deservingness," Kenworthy highlights some "exihibits" of historical charitable practices that have resonance with contemporary crowdfunding. Come up with your own "exhibit" example of a charitable practice that encourages selective deservingness. How is this practice similar to and different from crowdfunding? 

• Can you think of examples of the "deserving popular" that you've seen online? 

Supplemental readings / media / resources: 

•  Several episodes of Queen for a Day are archived on YouTube, such as this one, discussed in the Chapter. Students might be interested in watching these and/or comparing them with more modern examples, such as some of the social media / TV campaigns of Mr. Beast. (For a scholarly discussion of Mr. Beast, see also this special issue of the Journal of Philanthropy and Marketing.) 

•  Social Science and Medicine published a special issue on deservingness and the politics of healthcare in 2012 that is still very relevant. 

• Amson Hagan's piece, "How Medicare for All Challenges Our Ideas of Black Deservingness," is a short but excellent companion to this chapter. 

Chapter overview: 

Chapter 3 explores the terrain and contours of inequities in medical crowdfunding. It explains how some campaigns succeed while many others do not, highlighting how crowdfunding reinforces and normalizes powerful social hierarchies while promoting a false idea of meritocracy and rugged individualism. 

Discussion questions / learning activities: 

•  Have students walk through the process of setting up a crowdfunding campaign or using a similar app or digital tool for health access (such as an electronic health service). At each step of the process, have students map out the different barriers that patients might face in being able to use the tool successfully (consider social, cultural, economic, linguistic, and technological barriers, just as a start). 

•  Ask students to discuss the two anonymized campaign examples pictured on pages 80-81. How would they assess / read the deservingness of each campaign? Ask them to discuss the examples with friends or family members outside class as well. How do these other people assess and read each campaign? Discuss why people are inclined to assess campaigns in the ways that they do, and how that might impact broader patterns of crowdfunding inequities. 

Supplemental readings / media / resources: 

•  This Health Affairs blog post nicely explains how digital inequities are linked to social determinants of health. 

•  Many of the studies discussed in this chapter can be find on my Research page.  

Chapter overview: 

Chapter 4 highlights the disjuncture between the myth of opportunity in the crowdfunding marketplace and users' ambivalent realities. It explores the more subtle tensions and cruelties that make it so that crowdfunding is never quite enough: how it reinforces individualism even as it purports to connect us, and how it renders real care impossible even as it makes it easier for us to express shallow forms of care through donations. 

Discussion questions: 

•  Chapter 4 introduces the ideas of "inescapable individualism" and "precarious care" as core features of the health crowdfunding experience. Can you think of other domains in contemporary life where these phenomena also show up? 

•  Have you or someone you know ever had the experience of "going viral"? What was it like? What were the upsides and downsides of the experience? How might the experience have been different if it had been for a medical or health need? 

Supplemental readings / media / resources: 

•  For graduate-level courses, pairing this chapter with a selection from Lauren Berlant's  Cruel Optimism would be very fruitful. For students who need a more basic introduction to Berlant's ideas, this New Yorker profile is quite helpful. 

•  Hannah Zeavin, "A New AI Lexicon: Care" 

• The work of mutual aid groups like Crowdsourced Rescue may be interesting for students to explore and examine alongside essays like Tamara Kneese' "Pay it Forward" on the differences between mutual aid and crowdfunding. 

Chapter overview: 

Chapter 5 situates crowdfunding within a wider set of digital technologies for health that are fundamentally altering how healthcare is delivered and where we intervene to help people. By exploring the stories of families trying to use crowdfunding to pay for complex care, it becomes clear that this technological solution, even when successful, often obscures the true causes and costs of care. The adoption of "downstream" technological tools like crowdfunding within health systems can distract us from complex upstream causes and worsen health inequities. 

Discussion questions: 

•  Think of several health technologies you use in your life - these could be apps, devices, treatments, or online platforms. Would you classify these as upstream or downstream interventions? Why? To what extent do these technologies contribute to or erode health inequities? 

•  What would more "upstream" crowdfunding for healthcare look like? Do you think it's possible? 

Supplemental readings / media / resources:  

• Emmanuel Dzotsi's RadioLab story, "The Least You Could Do," examines the phenomenon of people giving Black friends / strangers money in the wake of the George Floyd murder by police. 

• Timmermans and Kaufman's review article, "Digital Technologies and Health Inequities" offers an excellent big picture view of the central concepts in this chapter. 

Chapter overview: 

The final chapter of Crowded Out examines three different templates for action that can move us beyond crowdfunding as it currently exists: "tweaks and fixes," "re-imagining and remaking," and "living in the meanwhile." Following the conclusion, an Appendix offers greater detail on research methods, procedures, and collaborations. 

Discussion questions: 

•  Ruha Benjamin, the author of Race After Technology, argues that "the road to inequity is paved with tech fixes." What does she mean by "tech fixes?" Do you agree or disagree? Explain your thinking, citing examples. 

•  Is mutual aid an adequate response to the multiple crises many communities now face? Why or why not? What are the alternatives? 

Supplemental readings / media / resources: 

•  Dean Spade on mutual aid - interview in The Nation.