Citizen science “from the margins”: epistemologies of ignorance in the Movement of Women with Endometriosis in Mexico

ABSTRACT

This paper analyzes, from the perspective of feminist epistemologies of ignorance, the case of Endometriosis México: an association of women with endometriosis that denounces different types of ignorance produced around their disease. I examine how the unveiling and analysis of the production of ignorance has become a central element of their struggle and the driving force behind the creation of new knowledge. This is a case of citizen science made “from the margins” that does not fit the typical citizen science instrumental or democratic discourse. In this sense, it proposes new directions for discussing public participation in science and technology. The work accounts for the process of production of ignorance identified by the Association in the light of three forms suggested by Nancy Tuana: (i) “knowing that we do not know, but not caring to know,” (ii) “we do not even know that we do not know,” and (iii) “they do not want us to know.” I propose a citizen science “from the margins” as a form of public participation in science and technology based on an epistemology of ignorance.

RESUMO

Este artigo analisa, desde a perspectiva das epistemologias feministas da ignorância, o caso da Endometriosis México: uma associação de mulheres com endometriose que vem denunciando os diferentes tipos de ignorância produzidas em torno de sua doença. Examino como o desvelamento e a análise da produção da ignorância se tornaram um elemento central de sua luta e o motor da criação de novos conhecimentos. O caso nos mostra uma ciência cidadã feita “às margens” que não se identifica com o típico discurso instrumental ou democrático da ciência cidadã. Nesse sentido, propõe novos caminhos para a discussão sobre a participação pública em ciência e tecnologia. O trabalho dá conta do processo de produção da ignorância identificado pela Associação à luz de três formas sugeridas por Nancy Tuana: (i) “saber que não sabemos mas não importar em saber,” (ii) “nem mesmo saber que não sabemos,” e (iii) “quando não querem que saibamos.” Proponho aqui uma ciência cidadã “das margens” como forma de participação pública em ciência e tecnologia baseada em uma epistemologia da ignorância.

RESUMEN

Este artículo analiza, desde la perspectiva de las epistemologías feministas de la ignorancia, el caso de Endometriosis México: una asociación de mujeres con endometriosis que ha venido denunciado los diferentes tipos de ignorancia que se producen en torno a su enfermedad. Examino cómo el desvelamiento y análisis de la producción de la ignorancia se han convertido en un elemento central de su lucha y en el motor de la creación de nuevos conocimientos. El caso nos muestra una ciencia ciudadana hecha “desde los márgenes” que no se identifica con el típico discurso instrumental ni democrático de la ciencia ciudadana. En ese sentido, plantea nuevos derroteros a la discusión sobre la participación pública en ciencia y tecnología. El trabajo da cuenta del proceso de producción de la ignorancia identificado por la Asociación a la luz de tres formas sugeridas por Nancy Tuana: (i) “saber que no sabemos y que no importe saber,” (ii) “ni siquiera saber que no sabemos,” y (iii) “cuando no quieren que sepamos.” Propongo aquí una ciencia ciudadana “desde los márgenes” como una forma de participación pública en ciencia y tecnología basada en una epistemología de la ignorancia.

KEYWORDS:

• Citizen science
• feminist epistemologies of ignorance
• patient groups and health movements
• Endometriosis México

PALAVRAS-CHAVE:

• Ciência cidadã
• epistemologias feministas da ignorância
• grupos de pacientes e movimentos de saúde
• Endometriose México

PALABRAS CLAVE:

• Ciencia ciudadana
• epistemologías feministas de la ignorancia
• grupos de pacientes y movimientos en salud
• Endometriosis México

Acknowledgments

I thank the women members of Endometriosis México for their encouragement of this research; Arturo Vallejo and the anonymous reviewers for their sharp and generous comments; and Luis Reyes-Galindo for his wonderful work in reviewing and editing, as well as for his support in translating the text.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 That is, they occur in parallel to endometriosis, but are not caused by endometriosis, nor do they cause endometriosis. Some of them are chronic fatigue syndrome; gastrointestinal problems such as irritable bowel syndrome; and autoimmune problems such as hypothyroidism, arthritis, diabetes, fibromyalgia, among others (Dr. Rodolfo, member of the Medical Council of the Association, face-to-face interview).

2 Field work was resumed in this period due to the rise in activities experienced by the Association after the COVID-19 pandemic.

3 In most cases, I use the real names of those women from the Association who, after having read this manuscript, gave me their explicit authorization to do so, indeed through their own expressed interest in having their real names appear in the results; that is, as a minimal form of recognition and retribution. The names of the physicians were anonymized, except when I used publicly available sources. To make it easier to follow the testimonies, at the end of the article I attach a table of the interviews cited and the dates when they took place (see Table 1).

4 Defined as a series of unnecessary but consensual medical procedures among specialists, for which there is no unappealable scientific basis and there is always an alternative; in the case of endometriosis diagnosis by laparoscopy the alternative is clinical diagnosis, which has proven to be quite efficient when proper protocols are followed.

5 From the perspective of the Association’s Medical Council, the so-called 6 Ds of diagnosis, referred to in the introduction of the paper, provide a relatively solid basis for suspecting the disease and, in that sense, a good benchmark for diagnosing it.

6 According to Dr. Rodolfo (face-to-face interview), there are two types of endometriosis: deep or multiorgan/multisystemic, which infiltrates organs and systems; and superficial, which is when it is at the peritoneal level or is very small. The first can only be diagnosed by imaging methods, such as specialized ultrasound and magnetic resonance imaging; the second can only be diagnosed by surgical methods (ideally, minimally invasive surgery such as laparoscopy; although, generally, this type of endometriosis ends up being diagnosed by laparotomy, that is, by open surgery that derives from erroneous diagnoses such as appendicitis, gallbladder problems, etc.).

7 Members of Endometriosis México and members of its Medical Council defined “disabling menstrual pain” in interview as “pain that prevents you from performing any of your daily activities.”

8 Gynecologic endoscopy is a relatively recent type of specialty in medicine – also known as “minimally invasive surgery” – that deals with the diagnosis and treatment of various gynecologic pathologies, including endometriosis. It consists of the introduction of an optical system (endoscope) through the vagina (hysteroscopy) or through small incisions in the abdomen (laparoscopy).

9 The presence of endometrial tissue outside the pelvic area, in places such as the lungs, diaphragm, and brain, has been reported; these cases, however, are considered uncommon (INPER 2022b).

Additional information

Funding

This work was supported by the Nacional Council of Science and Technology of Mexico (Conacyt-México).

Notes on contributors

Julieta Piña-Romero

Julieta Piña-Romero (PhD Candidate in Philosophy of Science, UNAM) is a Professor of Science and Technology Studies at the National School of Higher Education, Campus Morelia (ENES – Unidad Morelia, UNAM). She was an Editor-in-Chief of C+TEC, the science communication journal of the Science and Technology Council of Michoacán, México. Her research focuses on science and public participation, particularly in the context of health activisms.