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Abstract

Amidst proliferating threats to trans rights, transgender activists are using data and data activism to advocate for and to protect trans communities. This transgender-led study asks “How do trans activists use data in their activism?” We interviewed 16 activists engaged in trans community care: from community healthcare to media production to policy making, our participants are making and using data about trans people to serve and support trans communities. Our findings reveal that participants use tactical approaches to data and data science that were consistent with existing data activist literature and contemporary approaches to data refusal. However, what emerged were more than sets of tactics — our participants described ways of knowing with and about data that are grounded in their experiences of (racialized, disabled, aging, queer) transness. Taken together, we consider these ways of knowing to be a trans data epistemology. Drawing on literature from trans theory, data activism, critical data studies, philosophy, and critical social theory we offer a narrative of trans people as creators of knowledge, data-based and otherwise, undergirded by four pillars of a trans data epistemology: categories are provisional and productive, data can be a tool of community care, community well-being is more important than “accurate” data, and data makes us visible to institutions.

Keywords

Transgender transgender rights data activism data epistemology community care data advocacy transgender activism

Introduction

As we write this, there are 809 anti-transgender bills being considered in 49 US state legislatures (“2024 Anti-Trans Bills: Trans Legislation Tracker—Translegislation.com”). These bills include bans on gender-affirming care for trans people, prohibitions on gender marker and name changes, exclusions from sports, forced outing of trans youth by teachers, and restrictions on bathroom use.¹ Celebrities like J.K. Rowling, Dave Chapelle, and Ricky Gervais have been vocal in their disdain for trans people, and dominant US news outlet The New York Times frequently publishes anti-trans screeds written by “gender critical” thinkers (“The New York Times Fails to Include Trans Voices in Majority of Articles About Trans Issues | GLAAD”, 2024). Amidst this violence, the loudest voices protesting anti-trans vitriol belong to trans people. For example, independent journalist Erin Reed uses data points and data visualizations to communicate new legislative dangers (Reed, 2024). Imara Jones founded TransLash Media, an independent reporting and storytelling nonprofit, to share news and stories about trans lives (Jones, n.d.). We are inspired by Reed, Jones, and countless other trans activists who are telling stories by us and about us and sustaining trans cultures, even as they are under attack.

Through 13 interviews during Fall/Winter 2023, we heard our participants describe tactical approaches to data and data science that were consistent with existing data activist literature (D’Ignazio, 2024; Milan and Velden, 2016) and contemporary approaches to data refusal (Cifor et al., 2019). However, what emerged were more than sets of tactics—our participants described ways of knowing with and about data that are grounded in their experiences of (racialized, disabled, aging, queer) transness. Taken together, we consider these ways of knowing to be a trans data epistemology. Drawing on literature from trans theory, data activism, critical data studies, philosophy, and critical social theory we are offering a narrative of trans people as producers of specialized ways of knowing—a trans data epistemology. This work is a contribution to the aforementioned fields, as well as science and technology studies (STS) and human computer interaction (HCI). This paper is also a contribution to our beloved trans communities, because, as Hil Malatino notes, trans people “lack the privilege of having an uncomplicated I” (Malatino, 2020, 35). As writers of this piece, even our authorial voice is one that is in active relationship with not only our participants and readers, but all of our trans kin.

Background

The resistance of being trans

“Part of the resistance of being trans is, like, how are we going to keep each other alive in the system?” Our participant, Brent, is talking about community care under what Ruth Wilson Gilmore et al. (2022) describes as organized abandonment. Organized abandonment covers those logics of violence that are marked by both presence—for example, of surveillance (Beauchamp, 2019), exploitation (David, 2017), over-policing (Stanley, 2021)—and the absence of structures of care that support our individual bodies, communities, land, reproductive possibilities, and agential labor choices. Institutions across domains from civic (West, 2014) to juridical (Walters, 2024) to medical (Ram et al., 2022) generally fail trans communities and we are left to care for each other. That is, trans people “infrastructure care” for ourselves and each other (Wilcox et al., 2023: 13).

Indeed, our participants were moved to do activist and community care work because of their own needs. The absence of an “uncomplicated I” tuned their awareness not only to their own unmet needs, but to those of their communities. For example, our participant Samara realized that his ability to access top surgery was the exception in his community and he formed his trans care nonprofit to fill the care gap. Every participant we talked to got involved because they needed care (physical, emotional, communal) that they were not receiving.

Their actions are not unique—they are acting in a legacy of generations of queer and trans activism in the USA (Stryker, 2004). For decades, trans people built networks, founded newsletters, and hosted retreats (Davis, 2015) for safe gathering. Repeating the long history of transgender activism is out of scope here. However, our participants were acting in ways consonant with extant literature on activism—they leverage aspects of their identity (Westbrook, 2020) and work within (and sometimes against) non-profit systems (Billard, 2021).

In the early 1990s, the identity label “queer” was being reclaimed by gay and lesbian people. British AIDS activist Simon Watney argued that this queer identity was an identity that “emerged in an emergency” (Watney, 1994: 16). Analgously, trans activism has always been working in an emergency. Laurel Westbrook, in their exploration of the development of trans identity, has argued that “transgender became a visible category of personhood through narratives of violence against transgender people” (Westbrook, 2020: 130). Indeed, we are mindful not to cling too tightly to categories when discussing trans community. When we write “trans” or “transgender” we are referring to everyone who considers themselves a trans, intersex, two-spirit, nonbinary, gender fluid, genderqueer, agender, or otherwise not cisgender person. Finn Enke, Toby Beauchamp, and others remind us that even as it was violence that cohered a trans personhood, transphobia and rigid binaristic gender systems harm everyone who is gender deviant or transgressive, regardless of gender identity or cisness (Enke, 2012; Beauchamp, 2019). The harm caused by transphobia does not stand alone, of course, but intersects with and is amplified by white supremacy, classism, homophobia, ableism, capitalism, and xenophobia, non-exhaustively. In this paper, we do not use “trans” as a metonym for “white and trans,” or as a stand-in for “trans” plus any other normative category.

Despite the framing of the paper as one that engages activists using data to care for their underserved communities, we are not starting from a position that conflates transness and victimhood (Snorton et al., 2013), but from a position of love and care for our community. We know that the fights for our rights have always been led by us (Taylor et al., 2018), and most often by trans women of color (Stanley, 2021). These battles exist across sectors, from healthcare (Shuster, 2021; Gill-Petersonn, 2022), housing (Van Streefkerk, 2022; Glick et al., 2019), sports participation (Burns, 2023; Sharrow, 2023), anti-murder (Westbrook, 2020). We follow Hil Malatino, who, in his powerful meditation on the vitality of trans care, laments that trans life “can’t be all slow death, homicide, suicide, and sustained institutional and interpersonal violence” (Malatino, 2020: 31).² We continue to show up for us, understanding the “we” present behind every “I.”

Just accept what people have to share about themselves

Simply being a transgender person does not imbue one with any magical knowledge.³ However, navigating social, institutional, medical, and juridical structures as a trans person does reveal particular aspects of those systems. We draw on epistemology, as theorized by philosophers and social theorists, to support our claims of a transgender data epistemology.

As a branch of philosophy, epistemology concerns itself with knowledge, and its contours, justifications, and rationales. Mainstream western epistemological inquiries have historically favored the perspectives of the dominant group—white, cisgender, heterosexual men.⁴ Assuming that there is no singular universal knowledge system, it follows that epistemologies based solely on the perspectives of one group are necessarily limited and incomplete (Mills, 1988). Standpoint epistemology addresses these limitations. As theorized by feminist scholars Nancy Hartsock (Hartsock, 2020) and Sandra Harding (Harding, 1992), standpoint epistemology adds a critical edge to epistemology, identifying the circumstances, location, and perspective (generally “social location”) of the knower as key elements of how things are known. This crucially counteracts the default “view from nowhere” (Haraway, 1988) and any rationales that imply “universal” knowledge. This feminist intervention was a crucial step for those of us thinking with/about transness because as Talia Mae Bettcher reminds us “We trans people live an ‘everyday’ shot through with perplexity, shot through with WTF questions” (Bettcher 2019: 8). Bettcher is describing a standpoint epistemology—one that identifies trans people as grappling with WTF (what the fuck?) questions, based in our locations, identities, and perspectives.

The concerns that emerge from standpoint epistemologies are necessarily material, infrastructural, and ideological. That is, when we make knowledge based on our own social location, that knowledge is grounded in our material realities. This is consonant with philosopher Matthew J. Cull's description of trans epistemology as concerned with ideologies underpinning “social practices, architecture, economic relations.” This statement is not the contradiction that it might seem to be at first glance. Trans epistemologies are not focused solely abstract questions about knowledge, but instead grounded in the sociomaterial realities of trans lives and the knowledge systems underpinning those realities. Thus, according to Cull, a “trans epistemology in this mode would involve political action, to tear down the ideological formations of cissexist and binarist ideology, replacing them with institutions and social practices that make trans lives less fraught with danger and marginalization.” Our participants demonstrated this approach to epistemology, foregrounding their own material realities.

Extant epistemological theories are insufficient to account for the ways that trans people relate to data, broadly, and data about transness, specifically. We briefly consider three reasons for this. First, feminist theories have historically treated trans people as objects of epistemic insight, rather than rightful producers of epistemic knowledge. As Viviane Namaste (2009) has argued, “feminist theory depends on looking at transsexual and transgendered bodies in order to ask its own epistemological questions.” An epistemology that starts with trans people, then, evades this game of theoretical telephone and puts trans people at the center of knowledge production. Second, sensemaking around trans issues is often subsumed under a broader umbrella of queer concerns. However, queer epistemologies are often based on perpetual contradiction, emergence, and instability. As Cull synthesizes, drawing on Namaste (2000) and Jay Prosser (1998) “an unthinking association of trans identities with queer ideas about the destabilization of identities is not only tenuous but indeed is actively transphobic” (Cull, 2024: 5). Cull's bold claim is a simple one that trans people are stable and reliable narrators of our own identity and thus subsumation under “queer” epistemologies can be harmful and inaccurate. Finally, as Charles Mills reminds us, knowledge is irreducibly social, and the sociality of our participants (as trans people themselves, working with data about their trans communities) yields novel and important epistemic insights (Mills, 1988).

Ultimately, a trans data epistemology is neither a trans epistemology that is about data, nor a data epistemology through a trans lens. Instead, we argue that trans data epistemology can be an “alternative epistemology” given that mainstream epistemologies are often unmoored from the realities experienced by marginalized groups (Mills, 1988).

Data is kind of the foundation of how you understand something

As data has become more central to our lives, so too has it become a key part of many activists’ tool kits. Data activism is not a separate form of activism (Langlois, 2015), but instead sits at “the intersection of the social and the technological dimension of human action” (Milan and Almazor, 2015: 122). These behaviors include, for example, civic hacking (Schrock, 2016), Indigenous mapping (Pearce and Louis, 2008), archival activism (Currie and Paris, 2018), indexing gender violence (Chenou and Cepeda-Másmela, 2019), and disaster response (Liboiron, 2015).

Our participants used data in a variety of ways, but none of them described themselves as “data activists.” We locate their work within data activism because of our understanding of data activism as a spectrum of behaviors that use systemic information to enact political change and care for communities (Milan and Velden, 2016). Stefania Milan and Lonneke Van Der Velden describe two ends of this spectrum. Reactive data activists respond to external threats, specifically those of massive data collection, by resisting the datification of their existences. Proactive data activists leverage data to promote “alternative narratives of the social reality, questioning the truthfulness of other representations, denouncing injustice and advocating for change” (Milan and Velden, 2016: 67). With one exception (Brent), none of our participants were squarely at one end or the other. Instead, we heard complicated and contradictory feelings about data, both as a concept and as a tool.

For our participants, data are not any one thing but instead, “data is kind of the foundation of how you understand something” as our participant Nell told us. Our participants described themselves using datasets of all sizes.⁵ Their comments revealed that they are thinking of data quantitatively, for example, employment statistics; and qualitatively, for example, intake interviews. However, our participants’ comments moved beyond facile counts and categories. Brent and Levi both discussed how they have some knowledge that they store in their bodies and have absorbed through interactions. Jae knows things because they sat “at a table with a trans flag” and talked to community members at events.

These embodied ways of knowing are often counter to cultures of datafication. Datafication is, nominally, the process of turning aspects of the world into numbers, or other manipulable data formats, often with the goal of monetization (D’Ignazio and Klein, 2020: 12). The United States today is a culture of datafication, which includes “ideological commitment that data can represent the world mimetically and automatically, that digital data can serve as perfect, machine-readable proxies for any person, place, process, or thing in the world” (Crooks, 2022: 414). Datafication, and big data cultures more broadly, is incredibly harmful to trans people. This harm can come from cisnormative values encoded into people-data handling practices e.g., in the case of content moderation (Mayworm et al., 2024; Haimson et al., 2021), airport screening (Costanza-Chock, 2018), credit reporting (Mackenzie, 2017 2019), facial recognition (Scheuerman et al., 2019), and voice training apps (Ahmed et al., 2022). The translation of normative value and knowledge structures into data structures has been documented elsewhere (Stevens, 2022), but missing from the conversation has been how trans people who work with data consider that data through their own knowledge structures.

In what follows, we briefly discuss our methodology and positionality. We then outline 4 principles of a trans data epistemology, illustrating them with quotes from our participants and connections to extant literature about data activism, critical data studies, and trans theory. We conclude with implications for further research.

Methods

We begin from trans person and philosopher Talia Mae Bettcher, who reminds us that “how one lives one's life, with whom one develops bonds of sociality and intimacy, becomes an integral component of philosophical methodology” (Bettcher 2019: 15). For us, it is an integral component to all methodology, including for this paper. We focused recruitment on trans people working at US-based trans-led and trans-serving organizations as a way to maximally center the trans and non-binary community. Our participants and results reflect the complex positionality that emerges from being a member of the community one serves.

Interviews

We performed recruitment and interviews during Fall 2023 under exempt status from our institution's Institutional Review Board. Stevens compiled a list of 93 organizations through internet research. Stevens then emailed 67 organizations to request an interview.⁶ From this, they conducted 13 interviews on Zoom (48‒82 min). In 2 interviews, a lab affiliate joined the interview. Doğan reviewed the recordings. An additional interview was conducted with a trans-serving non-profit but was excluded from analysis due to the participant not identifying as transgender. Before each interview, participants signed an informed consent form and any questions and concerns were addressed by the interviewer. We developed and used an interview protocol probing on the role of data in the participant's organization, strategic uses of data, speculative data tools, and their professional relationship(s) to data. The interviews were conducted using a trauma-informed approach designed to not elicit trauma around gender and transphobia. Additionally, we offered compensation for each participant. Several declined, asking their payment be diverted to a GoFundMe or donated to a community care organization. Interviews were then professionally transcribed before analysis.

Analysis

We analyzed the paper using a grounded theory approach. After processing the first 10 transcripts, we completed independent first-pass gerund coding (Charmaz, 2014). We regularly memoed and met to discuss the coding process and emerging codes. SA conducted axial coding and, combined with existing data activism literature, notably (D’Ignazio, 2024), they created an initial code book. This code book was refined with input from Stevens. From this code book we coded all of the interviews. Each author coded half of the interviews before swapping with the other author to review codes. We then discussed and resolved any disagreement.

The four pillars of a trans data epistemology emerged through discussion of repeated themes in the participant interviews. Importantly, we do not view these four pillars as the best or only ways to approach a this work. The pillars are an imperfect generalization of the complex details of data handling that our participants shared with us. As we developed the pillars, we iteratively returned to each transcript to ground our analysis in our participants’ practice.

Author positionality

Nikko Stevens: I came to this work as a trans person with experience as a community organizer, activist, lobbyist, software engineer, and elected person. This work is aligned with the rest of my scholarship which emphasizes the ways that technocultures are imbricated in systemic oppressions (especially white supremacy and cisnormativity). I contacted participants with an email that acknowledged the power imbalance between me (a researcher working at MIT at the time of this writing), and them. To every participant, I offered my own services and support e.g., publicity, networking, technical support. To date, one organization has taken me up on that offer. Even this article comes out of care for my community, and an attempt to use data to contribute to correction for epistemic disadvantage.

Amelia Lee Doğan: I came to this project after its development as a trans person interested in activism and data. My experience include working part-time for a university LGBTQ+ office for several years and researching other activists communities’ data and technical needs. I had no direct contact with any of the interview participants but their words and work truly made me cry at how other trans people are making this world a little better for us. Especially, as a trans young person of color, it was an honor to get to hear our elders talk about how they have fought and continue to fight and care for us.

Towards a trans data epistemology

Through interviews with our participants and robust data analysis, we developed four pillars of a trans data epistemology.

Categories are provisional and productive

In this section, we explore how trans activists shape, remold, and add categories to create future trans worlds. It is by now a truism that categories are political; from the Census (Kertzer and Arel, 2002) to medical coding (Deutsch et al., 2014), researchers have demonstrated that the boundaries drawn between objects are both political and politicized.

Challenges with categories are especially present when working with trans people. To be trans is to traverse, to move beyond the category into which one was coercively placed at birth. The act of “coming out” or otherwise communicating one's transness is an act that signifies that one has examined the birth category of gender and found it incorrect or otherwise ill-fitting. Many trans people (and perhaps many of the most famous of us) seem to have simply moved from one category to another. We (trans people) often describe other trans people as “just a guy!” or “the world's most beautiful woman,” and imply that these signifiers (“guy” or “woman”) are good fits for their signified. However, many trans people leave their categories of birth and find themselves without other categories (or labels, or micro-identities) that fit. There is, then, within trans sensibility, a general sense that categories and labels are fluid (though not necessarily unstable); this understanding extends into data.

Levi, a gender educator for young people and their families, understands this ambiguity as part of transness: “the more we exist and are visible, the more societal destabilization occurs. Because society is very invested in the gender binary.” Rather than tidy physical transition narratives from one gender to another, Levi sees “young people [who] could give a rat's ass” about any traditional binaries or constructs. But, Levi understands that the fluidity and expansiveness he is seeing in young people is deliberately slippery and “that makes tracking numbers seem like a futile exercise.”

While tracking fluid categories may seem futile to Levi, for Henry that fluidity is a source of pleasure. Henry noted with delight that through data (or rather, through the words that people put into fields that then become data), he learns more about our community and is pushed to grow:

I think that's one of the most beautiful things about being in community and even collecting data on the community. There's always something that's cropping up that's making me shift how I think and feel about the data and about our community. I think that's incredibly gorgeous, just the ability for something you would think is pretty simple and detached like collecting data on a population, how it can impact me. I love it when I get this long string of identity labels that some of them I’ve never heard of, and I’m, like, this is just beautiful. I love it when I get somebody who just puts “no” or something. Like, it's just so fun.

We probably need to clarify here that Henry is not being sarcastic but was genuinely pleased by both the abundance of labels and the refusal to use them. Through data, and through his clients’ refusal (Cifor et al., 2019), Henry is connected to the beauty and expansiveness of the trans community. Importantly, Henry is also talking with delight about the “long string of identity labels” that have been the target of jokes and eye rolls (Shalloe, 2019). But what these labels signify is trans people simply looking for words that feel like a better fit than the ones we were assigned. In this way, trans people using new identity labels are engaging in a productive act. By calling onseself, for example, an ace demigirl, demigirls produce new ways of being in the world, and, as Henry recounts, new ways of being in data (Harrison-Quintana et al., 2015; Savoia, 2000).

This productivity extends beyond identity labels however. K.J. Rawson runs both a trans archival project (the Digital Trans Archive) and an international LGBTQ+ linked data vocabulary (Homosaurus).⁷ Part of his activism is not only to catalog existing trans artifacts, but “to have language for things that we want there to be in the world even when those things have not yet materialized.” As a manifestation of this, the Homosaurus has an entry for “transgender beaches,” despite there not being an exclusively transgender beach.⁸ K.J. is thinking of his work as “bringing these things into being.” He speculated with us, saying “what happens if a whole bunch of writers start talking about it and then there is one?”

What K.J. and Henry describe is a sense of not being limited by the categories available in a given data set (or data entry form). Even as our participant Nell described data as “the foundation of how you understand something,” K.J. and Henry demonstrate how that understanding is not limited to what is available in the data. That our participants are able to hold categories lightly, and to envision new categories for ourselves is emblematic of “[t]he persistent ability of trans people to combine, modify, transform and circumvent generic convention” (Tamura-Ho, 2022: 4).

Data can be a tool for community care

As described above, trans activists have always cared for the trans community. In this section, we explore how data does not merely describe injustices, but how care drives data production for trans activists. Within trans communities, we are experiencing what Ruha Benjamin describes as “the datafication of injustice” (Benjamin, 2019: 93). This datafication of injustice is a “perversion of knowledge,” in which there is perpetually insufficient data proving that an injustice exists, creating conditions under which people do not feel ready to act until there is (illusory) perfect knowledge. The result is an interminable freeze state, unable to be broken until a complete data-based picture emerges.

However, data-based pictures are difficult when there is a paucity of data. Our participant Samara notes that for

all organizations that support oppressed and marginalized communities, there aren’t a whole lot of other people collecting data on our communities. If we’re not doing it for whatever type of work that we are doing, there's a good chance that no one else is either.

Through Samara's work with data, his organization has paid for over $300,000 worth of gender-affirming care to trans people in his state. That work was undergirded by data and data-rich arguments to institutions like health insurance companies and legislatures. Samara uses data to advocate for insurance companies to cover trans patients’ gender-affirming care.⁹ He explains “when we added comprehensive gender-affirming care to the benchmark [insurance] plans, the overall increase to premiums across the board was, like, seven cents or something.” Using data, Samara was able to debunk claims that gender-affirming care was taxing insurance companies or that it would raise premiums for non-trans patients. Samara's work is part of a broader initiative to encourage states to require gender-affirming care in insurance plans.

Arguments about the necessity or even the affordability of gender-affirming care are necessary in part because of the ingrained disbelief and skepticism for the testimony of marginalized people. That is, people use data to understand injustice because they do not believe what people tell them about their experience. As our participant Levi said “The frustrating part about the need for data is that we have to use it as proof” because no one believes trans people without it. Levi was describing both testimonial injustice and hermenutical injustice, and trans data epistemologies account for this in their operations. Testimonial injustice is when a person's testimony is disbelieved, or they are afforded a deficit in credibility due to their identity. Testimonial injustice can show up in the medical system for trans people who might have their gender identity attributed to mental illness or by the refusal of professionals to recognize gender identity even with administrative documentation, amongst many other examples (Bullock, 2023). Hermenutical injustice occurs when, even if a person is believed, the hearer lacks the framework to understand, often due to the speaker's marginalized position. Heidi Grasswick describes this as a “a lack of collective interpretative resources” (Grasswick, 2006). Hermeneutical injustice can be witnessed through the medical system's requirements for documentation from medical professionals for gender-affirming care that discredits trans people's own understanding of their gender identity by, in part, refusing to consider categories not present in their data-driven systems. Work like Samara's uses data to counter both testimonial and hermenutical injustice in the service of community—by borrowing data's epistemic authority to give hearers interpretive frameworks through which to understand trans needs.

However, data's role in community care is not only epistemic—it is also social. The category of trans, and of being counted, produced a sense of community for Diego and, ultimately, drove him into his work. Diego is an archivist and media maker. He credits data with understanding that he wasn’t the only trans person.

That was a way in which data was influential to me that I started thinking about, oh, actually maybe this community that I’m a part of, that I’ve always been told is obscure, doesn’t exist or – at that time, that was before YouTube. It was before you could upload a two-minute video to YouTube. And so now there's just so many more opportunities to connect with trans folks. But then it was just at the precipice of when that was starting to happen.

For Diego, data was a key way to get connected to a larger sense of what being trans meant in that moment. For Ezra, Rio, and Caleb, data was a way to make sure they were serving the whole community. They work at a trans care organization and, based on survey data, realized that they “had an over representation of trans masculine people.” They reviewed their organization's marketing materials to deliberately include more trans femme people. Another participant, Brent, expressed how without transparent data it can be hard for him to care for and heal trans people. However trying to collect data and use it for care is still a fraught and delicate area. When collecting data regarding violence and death (in this case for Trans Day of Remembrance) Henry says, “I don’t want to traumatize my community with this, but I also know that they would really like to have their loved ones counted in this larger ceremony and recognition.”

Our community is often required to produce various kinds of data about our own suffering and injustice before we can access resources and help. These requirements and data frictions follow insights from epistemic and hermeneutical justice scholarship (e.g., Fricker, 2009). Our interview participants confirm that these injustices shape how they interact with data, yet they maintain that their reason for producing data is ultimately driven by their commitment to continuing and improving their community care work.

Community well-being is more important than “accurate” data

Trans communities are experiencing an emergency. Well, it was already an emergency, but this is an epidemic. This is a crisis. This is, stop what you’re doing. We have to help now, today. And sometimes these pieces of data really can be a very strong call to action. (George)

In this pillar, we examine how participants prioritized actionable data for the trans community. Our participants reflected an understanding of data as rhetoric, as merely “one mode of conveying information” (Haarman, 2021: 35), not the only mode. When data is simply one of many ways of conveying information, it does not need to be viewed as the canonical source of truth. Our participants repeatedly emphasized that actionable and useful data for community care was the utmost priority over true, accurate, or verifiable data. We do not mean to undermine the meticulous data work of our participants but to emphasize the desired outcome of community well-being of their data work. This aspect of trans data epistemology is consonant with the idea that data is for community care.

George collects a lot of survey data in his work, and has used it successfully in his state to advocate for trans K-12 students. He is eager for a question about gender to appear on the US Census: “When we’re fighting for money, what do our federal politicians always go back to? ‘Well, how many people are there?’” Similarly, Jae frequently talks with state legislators and was frequently confounded by the lack of local information. She said “if I can’t tell our policymakers… this is the breakdown in your state, in your county, then they don’t care.” Here again, Jae's experience exemplifies the epistemic injustice experienced by trans communities and the ways that they borrow the epistemic authority of data to support their claims for resources.

George acknowledges that there are plenty of reasons that trans people might not want to answer a gender identity question on the census, including community fear of the state. “Paranoia runs deep with our people,” he said

Sometimes it's good and sometimes not. But I would rather us put in the really hard work to try to convince people to fill out the damn census and be counted. I just believe that when that day comes, that first one is going to be trash. It's not going to be real, but we gotta get through the trash. (emphasis added)

George is expressing this principle perfectly—an understanding that regardless of what the number says or how the census is conducted, it won’t be perfectly accurate. But, it will be useful. “When we try to go to our government officials and go to funders, if we can say with our full chests, ‘7% of the population in the United States identifies as trans,’ That's powerful.” George's comments do not reflect a disregard for truth or accuracy. Instead, they reflect an orientation that prioritizes community well-being. Some researchers argue that including a box allowing trans people to self-identify might make it easier for census officials to rebuff accusations that the census is exclusionary to populations like non-binary people that are not counted (Guyan, 2022: 183). Indeed, our participants are negotiating the fine line between data that provides epistemically intelligible claims to resources and data that “accurately” counts each of us.

For George, gender identity on the census is not just about convincing the government that a certain percentage of the population is trans, or convincing funders that trans initiatives are grant-worthy. It is a matter of life and death: “Our folks are dying today. Like, we’re dying now, and it will be a heavy burden on trans-led and trans-centered orgs” when trans death outpaces trans funding, a future that the current presidential administration is creating. In addition to understanding that data collected about us isn’t necessarily “true,” our respondents also expressed an understanding that holding data to truth standards is besides the point, even if we are the ones being taken advantage of.

Tuck is a media host who has run an internet-based trans mutual aid fund for several years. He said

some people are going to scam us for sure. But I think just on average, most of them are real trans people who need something, and the people who are scamming are probably just also real people who need something. And you just kind of have to accept that in order to not gate keep the resources.

Similarly, George said “You know, if [clients] end up scamming us, good for them. Like, I don’t care.” Henry expressed how the emphasis on truth for the medical system can be overwhelming for clients who wait on a “million wait lists.” Henry's organization helps clients obtain letters in “[t]hree days. No barriers.”¹⁰ What this attitude displays is not an indifference to fraud or even an abundance of resources—all of our participants were working within resource-constrained environments. Instead, it demonstrates an orientation to community-first care taking, insisting that lowering barriers to receiving resources and care is more important than making sure that everything is “true.”

Our participants’ emphasis on actionable data facilitating community care over abstract ideas of truth reflects the spectre of interpersonal violence that trans people live with. In the United States, trans people have long been accused of being “evil deceivers and make believers” (Bettcher, 2007) because of a perceived contrast “between gender presentation (appearance) and sexed body (concealed reality).” This supposed “dishonesty” has real consequences for trans people prosecuted and convicted for failure to disclose their transness to sexual partners (Straayer, 2020; Sharpe, 2017).¹¹ In more violent cases, transphobia causes the deaths of trans people, including youth like Gwen Arajuo, Islan Nettles, Brandon Teena, and Angie Zapata who are just a few of those murdered when those around them “discovered” that they were trans. It follows, then, that trans people like our participants would not be inclined to subject each other to cisgender standards of “authenticity” or “proof” especially vis-a-vis datafied systems and data regimes that, by design, limit our ability to describe ourselves. A trans data epistemology, then, “imagine[s] a radically inclusive approach to trans knowledge production that troubles the borders between ‘fact’ and ‘fiction’ and refuses to assimilate trans lives into a single or homogenous narrative” (Tamura-Ho, 2022: 4).

Data makes us visible to institutions

For the last pillar, we recount how participants shaped their data to be intelligible to institutions and to make trans people legible and visible. Trans lives are lived in endless tensions of in/visibility (Nicolazzo, 2021). Beyond Foucauldian platitudes about the trap of visibility, trans people experience material consequences for their choices. Those of us who pursue medical treatments are subject to gate-keeping, medical transphobia (Knutson et al., 2016), and the continual burden of framing our transness in ways that will result in care.

Samara engages in what D’Ignazio (2024) describes as the “reframing” work of data activism—the work of “creating and distributing alternative narratives” (D’Ignazio, 2024: 194). In this case, he is working to reframe and make legible gender-affirming care as preventative care. Preventive care is legible to, and endorsed by, insurance companies in a way that care designed to affirm gender has never been endorsed. He told us:

When we look at the actual data for the trans community, gender-affirming care significantly decreases suicide attempts. That, to me, is an extremely easy correlation to gender-affirming care being preventative care. It is care that is keeping us alive, right? And it is care that is offsetting other medical issues, like whatever happens to our body during suicide attempts and the outcomes of that and potential lifelong implications depending on how we choose to attempt. [Insurance companies] use preventative care for so many things that make total sense to everybody's brains because it happens for everybody's body, but when it only happens for a certain community and our bodies, it somehow becomes something else. But it's not, right? Like, we are preventing medical complications. We are preventing deaths.

Samara broke the heaviness of talking about having to beg insurance companies to support our healthcare and he began to joke with Stevens about the effects of missing an HRT dose. “I get hot flashes!” he said, laughing. We laughed about the impacts of missing shots, and Samara paused before saying “my T shot every week is literally helping keep me alive.”

While Samara makes trans needs visible by renaming them, Henry makes trans people legible by relabeling them. Henry shared that his organization is rarely able to use clients’ identity labels when sharing data out—people simply do not understand the words that trans people use to describe ourselves. As an example, he said

instead of having pan-gender, bi-gender, agender, I’ll kind of throw that into a gender diverse nonbinary category. And it just depends on who I’m talking to. I was talking to a legislator the other day, and I had to use gender as a line analogy. I don’t even remember the last time I had to do that.¹²

These analogies are akin to “strangers in the dataset"—outsiders who need wayfinding mechanisms in order to understand how to navigate gender beyond a cissexist binary (D’Ignazio and Klein, 2020).

Perhaps the work that best exemplifies this principle is Nell's. She runs a Texas-based trans-focused non-profit and for the last ten years, she has been corresponding with incarcerated trans people, at a rate of about “500–600 people a year.” In that time, she has documented approximately 14,000 instances of violence experienced by incarcerated trans people. But those incidents did not come to her in tidy packages—they came in narrative form written in incarcerated people's letters.

From her training and perspective as a sexual assault victim's advocate, Nell views the incarcerated trans people's perspective as one that has been actively disempowered: “Anyone who's been sexually assaulted, they’ve lost their power,” she told us. Part of giving them back their power is “we believe whatever they tell us. We just need it structured differently than they usually do.” Nell's actions embody the belief that individuals are the experts on their own lives, and she grants them the “dignity of belief” (Salamon, 2014). Nell exchanges as many letters with people as needed to help translate their experiences and stories into “data” in order file a formal complaint.

Nell will get a letter from an incarcerated person

and they say, “I was assaulted, and I want you to help me.” And that’ll be it. We’ll get a letter. It’ll basically say that, and I’ll have to write them back and say, “When were you assaulted? Who did it? Where did it happen? Did you file a grievance? What was the response to the grievance? Can you give us the exact words of that response?” Because that all helps us to file a complaint.

In Nell's case, she is not only translating people's lived experiences into data, she is then converting that content into institutionally legible-forms. Nell's organization has a Data Explorer and she makes that data available to the general public, including and especially prison auditors, who assess levels of violence in various prisons under the Prison Rape Elimination Act.

Nell's work in particular exemplifies all pillars of a trans data epistemology. She uses data to make trans experiences visible to institutions, in a direct attempt to offer care, understanding that nuance may be lost in the conversion to a quantitative rendering. But that what we lose in accuracy and nuance, we make up for in being able to access care. At the time of this writing, the Data Explorer reports that 26,710 communications had been sent and received (Gaither, 2025). Nell has converted these communications into data points rendered in bar and pie charts, queryable and filterable, on the Data Explorer. When we asked her how many prison auditors had used this data, the answer was “one” and “as far as any report in the Texas system that I’ve seen, none of them have documented using any of our data or contacting us, and none of them have contacted us, but, of course, they can.” Even when the institutions do not respond, trans people continue to use data to support our communities.

Conclusion

Our participants’ expression of a trans data epistemology stands apart from hegemonic values about data, in which data is a mimetic representation of reality, a way to discern truths about the world through big data insights, and/or a source of capital accumulation. As we write this conclusion, in February 2025, there is national outcry about the ways in which government data is being handled and traded, largely for power and profit (Duehren, 2025). AI and the Big Data that powers it are being used to target and harass trans people, undocumented people, immigrants, disabled people, as a non-exhaustive list. Using data and datafied systems in these way is counter to the trans data epistemology that our participants described.

We offer this work not only in service to our participants and trans kin, but to broader academic and practitioner circles engaged in knowledge production with and for trans communities. At the time of this writing, the US presidential administration's intense and focused targeting of trans people is largely data-driven and powered by an immense computational infrastructure. A trans data epistemology can be a generative starting point for considering ways to protect trans people and resist our further criminalization. Additionally, we invite other researchers to consider how a trans data epistemology might shape the development of many aspects of AI systems, including dataset design, model training, and governance infrastructures (e.g., Attard-Frost, 2025).

As US-based researchers and trans people, we are watching the rapid deployment of data-driven systems to police, surveil, and control. A trans data epistemology offers new ways to think about those systems, their roles, and their designs. Trans people have long been involved in the design of technological systems, not always meaningfully (Haimson et al., 2023), but there will not be a trans data epistemology if there are no trans people. We urge researchers and practitioners, then, to not only engage with trans epistemologies in their work, but to recruit, partner with, and pay trans people to design technologies.

Our participants demonstrated a variety of savvy and nuanced relationships to data, especially in the context of social change work. Through their activism and community work, they described the ways that categories are provisional, that data can be a tool for community care, that “true” data is less important than useful data, and the ways that data can be used to negotiate our visibility to institutions. Ultimately, we are inspired by the work our participants are doing, which is the smallest window into the work that trans people do for each other. As Samara told us, “the shit that trans folks can get done in this world when we feel comfortable and solid and are able to show up authentically, is unmatched by any bullshit that cis people can do.”

Footnotes

Acknowledgments

The authors wish to thank Molly Morin, Rebecca Sanaeikia, and the members of the Data + Feminism Lab at MIT for their engagement and review. Additionally, we are grateful for the generous feedback by three anonymous reviewers. This article is stronger because of their input.

ORCID iDs

Nikko Stevens

Amelia Lee Doğan

Ethical approval and informed consent statements

Study “E-5209, Transgender Data Activism” was approved by MIT's Committee on the Use of Humans as Experimental Subjects. All participants signed an informed consent document. Copies on file with corresponding author. All participants were given the opportunity to review their quotes and make edits or withdraw from the study.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Science Foundation Graduate Research Fellowship Program, Directorate for Computer and Information Science and Engineering (grant number: DGE-2140004, 2213826).

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability

Recordings and transcripts from interviews are on file with the corresponding author and will be retained for five years from August 2023.

Participants

Pseudonym, if anon	pronouns	Organization
Nell	she/her	state-level trans support organization
Asra	she/they	trans history archive
Diego	he/him	trans history project
Ezra	he/they	trans care organization A
Jae	they/them	state-level trans support organization
Levi	he/him	trans education organization
Tuck	he/they	trans media organization
Rio	they/them	trans care organization A
Samara	he/him	state-level trans mutual aid organization
Walker	he/him	trans history project
K.J.	he/him	Digital Transgender Archive, Homosaurus
Caleb	he/him	trans care organization A
Brent	he/him	trans care organization B
Maya Lynn	she/her	state-level trans advocacy organization
George	he/him	state-level trans advocacy organization
Henry	he/him	state-level trans advocacy organization

Notes

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Trans data epistemologies: Transgender ways of knowing with data

Abstract

Keywords

Introduction

Background

The resistance of being trans

Just accept what people have to share about themselves

Data is kind of the foundation of how you understand something

Methods

Interviews

Analysis

Author positionality

Towards a trans data epistemology

Categories are provisional and productive

Data can be a tool for community care

Community well-being is more important than “accurate” data

Data makes us visible to institutions

Conclusion

Footnotes

Acknowledgments

ORCID iDs

Ethical approval and informed consent statements

Funding

Declaration of conflicting interests

Data availability

Participants

Notes

References