
Dear researchers, scholars, and journalists,
So you want to study the DIY HRT community? Interview its members?
First, we need you to understand you are not doing us a favour. We are not thankful for you “bringing attention to this issue”. We are not flattered by your “genuine interest” and commendable willingness to hear our stories. We are not grateful for the “privilege” of being given a voice, or for being deemed worthy of rubbing shoulders with your stylish intellect. We are not victims in need of rescue, except, perhaps, from your careless curiousity and the debate about us currently unfolding in your head, in our absence, and against our will.
We do not need you. In fact we need the absence of you. We do not trust your motivations, your goals, or your capacity for the discernment required to engage with us in any way that isn’t derivative, or harmful, or both. Your inquisitiveness is fundamentally suspect; your unprompted presence at our doorstep is a threat by default.
Here you are, a tourist on safari, bloated with entitlement and tresspass, disrupting our space with your gawking while contributing nothing of lasting value to our communities and their collective knowledge. The only tangible contribution is to your engagement metrics and h-index, to boosting your career while heedlessly fueling the public’s addiction to outrage and scapegoating.
Your questions are always some ostentatiously smart but ultimately hollow rewording of “why DIY?”, and the answer is always going to be: because it saves lives; because we can; because we want to; because we have to; because of our material conditions; because it gives power; because it gives autonomy, because we know how, because we know best, because we care for each other, because it elevates us; and because the face you make when you silently clutch your pearls is priceless.
“But isn’t it risky?” I hear you ask, and the answer is always going to be: talking to you and living among your kind is a bigger risk than my lab-tested, community-vetted, high quality injectable hormones. We have each others’ back and skin in the game; you have an unexamined moral convinction that doctors know best before, during, and after they misinform, mistreat, and neglect. But in truth your question is rhetorical. You are not seeking to understand, but dutifully demanding an admission of guilt, trying to smoke out signs of destitution and distress, anything to justify slapping a warning label on a practice of emancipation. “But isn’t it risky?”: an expression of concern, saturated with allusions, doubling as a reminder to comply and share in the same docility.
And lastly, to our friends and allies: you know full well good intentions and shared intersections are not synonyms for safety. Your prose will never be so well crafted as to liberate more than it restrains. What are you trying to accomplish that isn’t for yourself? At best you’ll cause a security nightmare; your words are bugged, they paint a target on our backs. If you can pick up what we’re putting down, then let us save our own lives.
Still here? Firm in your conviction the above misses the mark in your case? Then consider the following questions and material. If you can’t answer them, or won’t, if you cannot pass the lowest bar, spare us the labour of attending to your bruised ego and move along. Find something else to study and report on. Go away.
Anne Tagonist. (2009, December 10). Fuck You Reloaded. https://tagonist.livejournal.com/199563.html [archive.org]
Dear Mr. or Ms. Grad Student, I am sorry to report that I will not participate in your study as a data point. I don’t understand what you’re trying to accomplish. I don’t trust you. I don’t like you. I don’t care if you succeed. In fact, I kind of think you suck. Here’s why:
Lime Jello. (2015, April 16). Why You Shouldn’t Study Sex Workers. Tits and Sass. https://titsandsass.com/why-you-shouldnt-study-sex-work/ [archive.org]
Find Something Else to Study…
- …because sex workers are human beings, with whole entire lives outside of their jobs.
- …because research on sex work should directly benefit sex workers.
- …because sex workers can and do research sex work.
- …because the academic job market is terrible.
- …because sex work research is hard.
- …because you really can find something else to do.
Become a better scholar by engaging with the following writings on community-driven research (CDR), community-based participatory research (CBPR), instances of CBPR/CDR done more or less right, and the ethics of researching marginalized, heavily-scrutinized people. Most texts can be accessed using sci-hub, sci-net, or Anna’s archive.
Montoya, M. J., & Kent, E. E. (2011). Dialogical Action: Moving From Community-Based to Community-Driven Participatory Research. Qualitative Health Research, 21(7), 1000–1011. https://doi.org/10.1177/1049732311403500
Proponents of community-based research advocate for the active involvement and engagement of community members, citing improved construct validity, intervention efficacy, and accountability. However, to create the conditions in which expertise is mutually constructed and in which no one is the object of research, a reconsideration of the fundamental ethos of community involvement and engagement is required.
Yarbrough, D. (2020). “Nothing About Us Without Us”: Reading Protests against Oppressive Knowledge Production as Guidelines for Solidarity Research. Journal of Contemporary Ethnography, 49(1), 58–85. https://doi.org/10.1177/0891241619857134
I put forth recommendations for ethical, policy-relevant research with groups of people who experience routine, normalized violence, and who are frequently silenced and misrepresented by academics and policy makers. This article analyzes protests against what activists identify as oppressive knowledge production by “outsiders” who are not sex workers or homeless. Protest events against research “about us without us” occurred between 2012 and 2015, and targeted academic researchers and policymakers. I draw lessons from marginalized groups’ protests against knowledge production by outsider “experts” to present three problems with traditional poverty research: pathologization, paternalism, and extractive exotification.
Simon, C., Brothers, S., Strichartz, K., Coulter, A., Voyles, N., Herdlein, A., & Vincent, L. (2021). We are the researched, the researchers, and the discounted: The experiences of drug user activists as researchers. International Journal of Drug Policy, 98, 103364. https://doi.org/10.1016/j.drugpo.2021.103364
We call for a shift from CBPR to Community Driven Research (CDR) in which the research supports our research questions, which are formulated in consultation with institutional researchers, rather than by institutional researchers. […] CDR should include community-initiated research questions, leadership capacity development, and joint data ownership […] We aim to drive research, with decision making powers and full inclusion and exposure to the research process,
CDR should include community-initiated research questions, leadership capacity development, and joint data ownership. […] We aim to drive research, with decision making powers and full inclusion and exposure to the research process […] Research validates our anecdotal experiences of vulnerability and transforms them into empirical evidence of the lethal dangers we face. Thus, we cannot leave the power to do that research entirely in the hands of outsiders to our community whose motives and values are not ours.
Brothers, S., Simon, C., & Vincent, L. (2025). Community-Driven Research with People Who Use Drugs: A Virtual Project During Multiple Epidemics. Sociological Methodology, 55(1), 155–181. https://doi.org/10.1177/00811750241281063
Sociological approaches to digital and community-engaged research experienced significant innovation in recent years. This article examines developing and implementing a primarily virtual community-driven research (CDR) project with the National Survivors Union, the American national drug-users union, during the COVID-19 pandemic. Relationships between researchers and directly impacted people, such as people who use drugs, face many barriers. These issues were exacerbated during COVID-19 when in-person research decreased while drug-related harms increased. In response, this project modified the CDR model for drug-use research. The CDR model is particularly beneficial for studies with marginalized populations who may mistrust researchers. In CDR, impacted community members are fundamental project drivers. This project’s data are based on 29 months of weekly group meetings in National Survivors Union online spaces, group and individual text conversations, phone calls, and shared-document group work. The project co-developed methods for CDR with directly impacted people, including community-initiated research questions, low-threshold methods, collaborative writing strategies, coauthorship practices foregrounding directly impacted perspectives, and multiple dissemination forms. Modified CDR expands sociological methods for digital research, citizen science, and community-engaged research with vulnerable, criminalized groups. This approach may aid inclusive, innovative sociological scholarship and effective public health policy for reducing morbidity and mortality during multiple crises.
Morton Ninomiya, M., George, N. (Priscilla), George, J., Linklater, R., Bull, J., Plain, S., Graham, K., Bernards, S., Peach, L., Stergiopoulos, V., Kurdyak, P., McKinley, G., Donnelly, P., & Wells, S. (2020). A community-driven and evidence-based approach to developing mental wellness strategies in First Nations: A program protocol. Research Involvement and Engagement, 6(1), 5. https://doi.org/10.1186/s40900-020-0176-9
Mental health, substance use/addiction and violence (MSV) are important issues affecting the wellbeing of Indigenous People in Canada. This paper outlines the protocol for a research-to-action program called the Mental Wellness Program (MWP). […] The MWP is led by Indigenous researchers as well as non-Indigenous researchers who have extensive experience working with Indigenous communities, and most importantly, by community leaders and appointed community members on the Community Advisory Circles. Throughout all facets of the program process, methods, analyses, and interpretation of findings, the Mental Wellness Program aims to facilitate and honour a) Indigenous communities’ rights to self-determination, b) local community knowledge and context, and c) relationships between community and researchers. […] For research to be useful and valued, knowledge and experiences generated by research must be contextually relevant. The overwhelming majority of health research literature is based on Western knowledge paradigms that do not resonate or hold relevance to Indigenous peoples who have survived and thrived for centuries using sacred, undocumented, or unrecognized knowledge. This program holds community-specific knowledge, knowledge systems, and protocols as central to the ways of conducting research and sharing findings.
Adams, N., Pearce, R., Veale, J., Radix, A., Castro, D., Sarkar, A., & Thom, K. C. (2017). Guidance and Ethical Considerations for Undertaking Transgender Health Research and Institutional Review Boards Adjudicating this Research. Transgender Health, 2(1), 165–175. https://doi.org/10.1089/trgh.2017.0012
Jones, M., Hoague, D., Spriggs, R., Catalan, E., Adams, N., Watkins, T., Tripati, A., & Norris, K. C. (2022). Establishing a Framework for Sustainable Community Action Research. Ethnicity & Disease, 32(4), 333–340. https://doi.org/10.18865/ed.32.4.333
Tracy, S. J. (2010). Qualitative Quality: Eight “Big-Tent” Criteria for Excellent Qualitative Research. Qualitative Inquiry, 16(10), 837–851. https://doi.org/10.1177/1077800410383121
Neufeld, S. D., Chapman, J., Crier, N., Marsh, S., McLeod, J., & Deane, L. A. (2019). Research 101: A process for developing local guidelines for ethical research in heavily researched communities. Harm Reduction Journal, 16(1), 41. https://doi.org/10.1186/s12954-019-0315-5
Boilevin, L., Chapman, J., Deane, L., Doerksen, C., Fresz, G., Joe, D., Leech-Crier, N., Marsh, S., McLeod, J., Neufeld, S., Pham, S., Shaver, L., Smith, P., Steward, M., Wilson, D., & Winter, P. (2019). Research 101: A Manifesto for Ethical Research in the Downtown Eastside. https://doi.org/10.14288/1.0377565
Bauer, G., Devor, A., heinz, m., Marshall, Z., Pullen Sansfaçon, A., & Pyne, J. (2019). CPATH ethical guidelines for research involving transgender people & communities. Toronto: Canadian Professional Association for Transgender Health. [PDF EN, FR] [archive.org EN, FR]
Braun, V., & Clarke, V. (2023). Toward good practice in thematic analysis: Avoiding common problems and be(com)ing a knowing researcher. International Journal of Transgender Health, 24(1), 1–6. https://doi.org/10.1080/26895269.2022.2129597
Schwabish, J., Feng, A., & Jenkins, W. (2024). Do No Harm Guide: Crafting Equitable Data Narratives. Urban Institute. [PDF] [archive.org]
Myerscough, F., Schneider-Reuter, L., & Faissner, M. (2024). Epistemic appropriation and the ethics of engaging with trans community knowledge in the context of mental healthcare research. Philosophy, Ethics, and Humanities in Medicine, 19(1), 7. https://doi.org/10.1186/s13010-024-00157-9
Marshall, Z., Kaposy, C., Brunger, F., & Welch, V. (2022). Trans Research Ethics: Challenges and Recommendations for Change. Bulletin of Applied Transgender Studies, 1(3–4), 187–210. https://doi.org/10.57814/2rv3-kf42
Boser, S. (2007). Power, Ethics, and the IRB: Dissonance Over Human Participant Review of Participatory Research. Qualitative Inquiry, 13(8), 1060–1074. https://doi.org/10.1177/1077800407308220
Horowitz, C. R., Robinson, M., & Seifer, S. (2009). Community-Based Participatory Research From the Margin to the Mainstream. Circulation, 119(19), 2633–2642. https://doi.org/10.1161/CIRCULATIONAHA.107.729863
Woolf, S. H., Zimmerman, E., Haley, A., & Krist, A. H. (2016). Authentic Engagement Of Patients And Communities Can Transform Research, Practice, And Policy. Health Affairs, 35(4), 590–594. https://doi.org/10.1377/hlthaff.2015.1512
Suarez-Balcazar, Y. (2020). Meaningful Engagement in Research: Community Residents as Co-creators of Knowledge. American Journal of Community Psychology, 65(3–4), 261–271. https://doi.org/10.1002/ajcp.12414
Collins, S. E., Clifasefi, S. L., Stanton, J., The Leap Advisory Board, null, Straits, K. J. E., Gil-Kashiwabara, E., Rodriguez Espinosa, P., Nicasio, A. V., Andrasik, M. P., Hawes, S. M., Miller, K. A., Nelson, L. A., Orfaly, V. E., Duran, B. M., & Wallerstein, N. (2018). Community-based participatory research (CBPR): Towards equitable involvement of community in psychology research. The American Psychologist, 73(7), 884–898. https://doi.org/10.1037/amp0000167
Smith, A. M., Hotchkiss, M., Gilbert, C., Williams, D., Madhav, K., Bloomfield, K., Pautz, C. R., & Berke, D. S. (2023). Process Adaptations to Community-Engaged Research for Victimization Prevention of Trans Women: Failure as a Blueprint towards Non-Exploitative Implementation Science. The American Psychologist, 78(2), 186–198. https://doi.org/10.1037/amp0001063
Hassan, S. (2022). Saving Our Own Lives: A Liberatory Practice of Harm Reduction. Haymarket Books. [link]
Flyvbjerg, B. (2001). Making social science matter: Why social inquiry fails and how it can succeed again. Cambridge university press. [link]
Brett, A., & Lee, C. (Eds.). (2025). The Guide to LGBTQ+ Research. Emerald Publishing Limited. https://doi.org/10.1108/9781835499665
Selected chapter: Reynolds, K. (2025). LGBTQ+ Participant Representation: Getting It Right. In A. Brett & C. Lee (Eds.), The Guide to LGBTQ+ Research (pp. 223–229). Emerald Publishing Limited. https://doi.org/10.1108/978-1-83549-966-520251040