$100 bills folded to look like a human brain, on a white background.

Brynn Fitzsimmons and Rebekah Swank // The narratives we use to secure funding for community-facing work, whether that work is explicitly health-focused or not, can and do impact the health of that work and, more importantly, the people doing it.

As those in health humanities well know, the way we talk about health, wellness, and bodies forms how we see and do health-related work. For example, Judy Segal notes how health metaphors constrain health policy discourse, while Moya Bailey and Whitney Peoples assert that media broadly “teaches us about what our society believes about health” (3).

In our work with Independent Media Association (IMA), a Kansas City-based citizen journalism project, we are keenly aware of the ways in which the news media we and other work citizen journalists produce intervenes in how our audiences are asked to think about bodies, lived experience, and health-related questions (such as housing, public safety, or healthcare access). However, as our work has grown and we have had to grapple with questions of sustainability and growth, we have found health rhetoric in a place we weren’t looking for it: in building meaningful relationships with those who can financially support our work.

Many of the funding opportunities available to small, grassroots organizations like IMA don’t explicitly seek to address health (e.g., although we have done citizen health journalism, this is neither the majority of our work nor the majority of our funding applications). However, the traditional model of philanthropy positions organizations like ours as intermediaries who  “represent” our communities, and the norms of philanthropy often require us to represent ourselves, our communities, and our work via an “overcoming narrative” (Hitt 10) that disembodies and commodifies us and our work and pathologizes our communities.

Undermining embodiment and promoting commodification 

Edgar Villanueva discusses the mapping of colonial ideologies, including “division, control, and exploitation” onto philanthropic structures (42). This becomes clear when grantseekers must meet exacting standards, including 10% administration budget caps and “success” metrics defined by funders. “Noncompliance” brings punitive results like the loss of future funding opportunities or the “clawing back” of funds (Knowlton). 

Not unike modern medicine’s infatuation with categorizing and controlling disease (often to the exclusion of understanding people) (Foucault 15-21), this framing for funding forces grantseekers into making their work about optimizing their solutions, not building relationship or solidarity among people. These types of requirements–tacked onto a funding model that prioritizes the project rather than the people doing and/or impacted by it–in practice end up punishing people when they’re not able to divorce their project from the bodies making it happen

Pathologizing communities 

Many potential funders also frame those we serve not just through the lens of objectivity, but also as inherently deficient – needing those with wealth, privilege, education, and other resources to plan and execute solutions to their problems (Ghiridharadas). 

For example, IMA focuses much of our work on the solutions proposed by community members with lived experience with the problems they are trying to solve. However, in order to appeal to funders, we are often asked to describe our communities in terms of “minority” status, the resources they lack, and the problems they face (Bierria). This forces us to make assumptions about accuracy, effectiveness, and relevance of the work itself and our evaluation of it in ways that are culturally defined by the grantmaker, not the community–an issue the turn toward culturally-centered approaches to health communication seek to address (Dutta). Rhetoric that impacts people’s health and well-being (as funding does) would benefit from reconsidering as well.

Funder rhetoric that plays into a narrative of “overcoming” 

As Pérez and others have pointed out, many funders see themselves as “investing in” fixing or overcoming some problem and see grantseekers as contractors who they employ to complete projects defined by the funder. This rhetoric, of course, closely mirrors the overcoming narrative disability studies discusses as common to ableist rhetoric (see Garland-Thomson; Hitt; McRuer).

Funders often won’t support those who haven’t yet perfected a process or practice; the only way to learn is to do unpaid labor, pushing teams into burnout. and, quite frankly, burnout is not fundable, nor are any of the other possible health- or body-related reasons a project may “fail” or not go as planned (e.g., a chronic health flare, financial instability from having only a project-based income, etc.).  

What Now?

As health humanities scholars work on community-engaged projects, often using research and writing skills to write grants and create fundraising campaigns, it is important not just to think about how to navigate divisive philanthropic structures that harm health but also to consider what they might do to change those structures. This, of course, goes especially for scholars whose universities are also grant-makers for their community work and scholars who have tenure or other forms of stability. 

Many funders, including those IMA has worked with, have taken steps to provide funding opportunities that contribute to healthier organizations, sometimes even making changes to those requirements mid-grant cycle. Health-supportive behaviors we’ve witnessed from funders include remaining flexible to budget changes and outcome changes, releasing restrictions on funding that’s already been granted, changing outcome reports to make them more accommodating of real-world challenges, and in some cases eliminating reporting requirements altogether or replacing them with site visits.

Writer and activist adrienne maree brown writes that funders must “move beyond proposal thinking and into sustenance thinking” (“thoughts for foundations”)—that is, they must put more energy into sustaining not just grassroots work but the people doing it and benefiting from it. But allowing grassroots initiatives and the people within and behind them the autonomy to self-define success–particularly in a way that recognizes and cares for the full embodied experience of all the people involved, not just disembodied metrics of success–would go much further to create healthy, sustainable, vibrant communities and community work than our current philanthropic funding model can.

Works Cited

Bailey, Moya, and Whitney Peoples. “Articulating Black Feminist Health Science Studies.” Catalyst : Feminism, Theory, Technoscience, vol. 3, no. 2, Catalyst: Feminism, Theory, Technoscience, 2017, https://doi.org/10.28968/cftt.v3i2.28844.

brown, adrienne maree. “thoughts for foundations and major donors,” adrienne maree brown, 15 January 2013. http://adriennemareebrown.net/2013/01/15/thoughts-for-foundations-and-major-donors/

Dutta, Mohan Jyoti. “The Critical Cultural Turn in Health Communication: Reflexivity, Solidarity, and Praxis.” Health Communication, vol. 25, no. 6–7, Routledge, Aug. 2010, pp. 534–39. Taylor and Francis+NEJM, https://doi.org/10.1080/10410236.2010.497995.

Garland‐Thomson, Rosemarie. “Feminist Disability Studies.” Signs, vol. 30, no. 2, 2005, pp. 1557–87. JSTOR, https://doi.org/10.1086/423352.

Ghiridharadas, Anand. Winners Take All: The Elite Charade of Changing the World. Vintage Books, 2019.

Hitt, Allison. Rhetorics of Overcoming: Rewriting Narratives of Disability and Accessibility in Writing Studies, National Council of Teachers of English, 2021.
Knowlton, Claire. “Why Funding Overhead Is Not the Real Issue.” Nonprofit Quarterly, 25 Jan. 2016.

McRuer, Robert. Crip Theory: Cultural Signs of Queerness and Disability. NYU Press, 2006.

Pérez, Amara H. “Between Radical Theory and Community Praxis: Reflections on Organizing and the Nonprofit Industrial Complex.” The Revolution Will Not Be Funded, INCITE! Women of Color Against Violence. Duke University Press, 2007. pp 91-99.

Villanueva, Edgar. Decolonizing Wealth. Berrett-Koehler, 2018. 

“What’s the NPIC and Why Should I Care?” zine, https://ia802709.us.archive.org/1/items/WhatsTheNon-profitIndustrialComplexAndWhyShouldICare/whats_the_npic.pdf



An Emergent Strategy Primer For Funders

Basically the entire second half of Decolonizing Wealth (Villanueva) 

“Pursuing a radical antiviolence agenda inside/outside a non-profit structure” (Alisa Bierria)

“Fundraising is not a dirty word: Community-based economic strategies for the long haul” (Stephanie Guilloud and William Cordery)

Guest Author

Image Credit:

Bekah Swank (she/her) supports social change work as a communicator and organizer of people and things. She assists Independent Media Association (IMA) with capacity-building tasks, including fundraising and communications work.

Photo by Photo by Morgan Housel on Unsplash

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