Endo Violence Magazyn #01

#01

F

ENDO VIOLENCE MAGAZYN

the purpose of the ENDO VIOLENCE MAGAZYN is to shed light on the injustice surrounding endometriosis and provide a platform for those affected to share their stories.

This zine aims to provide an experimental (guilt and judgment-free space) for endo-violence victims/survivors, allies, and advocates to share their experiences and creative expressions.

is an experiment & issue #01 starter a conversation mainly written by me (dr Alicja Pawluczuk/ HYSTERA) & with some input from the endometriosis community related to their interpretations of endo violence. my intention is to have the next issues co-created by the endometriosis community

a.pawluczuk@leeds.ac.uk studio@hystera.online @HY_STERA @AlicjaPawluczuk hystera.online

issue #01 [co]defining endoviolence

your take on endoviolence

tiny essay: Endo Violence: early thoughts & resistance in the making

art

endo violence temporalities: exploring digital [in]visibilities

next steps & getting organised.

F ENDO VIOLENCE INFLICTED UPON

ACTS OF VIOLENCE, DISCRIMINATION ,OR NEGLECT

INDIVIDUALS & COMMUNITIES THAT ARE AFFECTED BY ENDOMETRIOSIS.

F ENDO VIOLENCE SYSTEMIC AND STRUCTURAL INJUSTICES RESULTING IN HEALTH, SOCIAL, ECONOMIC, & DIGITAL INEQUALITIES. ENCOMPASSES A WIDE RANGE OF HARMFUL PRACTICES, ATTITUDES, AND BEHAVIOURS THAT VIOLATE THE RIGHTS AND DIGNITY OF INDIVIDUALS SEEKING SUPPORT, AND SERVICES

Endo Violence does not aim to blame or point fingers at a specific group that might be involved or/and entangled in the existing power dynamics but to holistically co-examine existing power inequalities and oppressions, and to create mindful, cross-sectoral and inter-disciplinary coalitions to address them.

endo violence: early thoughts & resistance in the making

dr Alicja Pawluczuk [aka @HY_STERA]

written as an introduction to the INCLUDE+ research project on endoviolence temporalities & digital inequalities.

Acknowledgements None of this text could be written without the endometriosis community (e.g., #endowarriors, endometriosis activists, gender health gap researchers and experts) whose support and work have helped me to survive and thrive, despite my own invisible disability.

Endometriosis activism is a collective effort.

thank you, [digital] endometriosis community, for being by my side over the years. I'm not sure if I'd be able to survive without your support.

This text is an introduction to my research project, "endo-violence temporalities: exploring digital [in]visibilities" at the University of Leeds and INCLUDE+ Network.

This is not meant to be an academic article. This text is not meant to encompass and analyse all structural issues affecting those with endometriosis or provide an in-depth analysis of theoretical concepts.

My intention is to provide some early thoughts on the concept of endoviolence, hoping that this text will be followed by participatory research activities which will help to co-shape the meaning of endo-violence.

I've been struggling with endometriosis (and all that comes with it) my entire life. At the age of 13, in post-socialist Poland, I experienced my first gynaecological examination - this also marked my first serious medical-misogynyrelated trauma.

As a chronically ill & neurodivergent white, Eastern European, workingclass, cis woman in my late thirties, I'm still trying to figure out how to best navigate the complex (and often invisible) power structures in which my condition, my pain and my sense of self continue to be framed - online and offline, and all of the spaces and temporalities in-between.

Getting to terms with EndoViolence is a complicated process, often fueled by anger, and a sense of injustice, but also - shame, guilt, and internalised ableism.

My identity continues to be shaped by social (e.g., what it means to be a well-behaved menstruator and a grateful migrant patient) and tech forces (e.g., digital communities, narratives of invisible illness warriors polluting social media with their pain and hysteria).

The Endo Violence concept was first used as part of an artistic intervention in collaboration with Helen Helen Sange - the founder and owner of Obenrum Untenrum/ Inclusive Gynecology and Sexual Medicine in Berlin, Germany (March-June, 2023).

PHOTO BY ZAIRA BIAGINI

ENDO VIOLENCE 18/03 - 31/05/2023 OBENRUM UNTENRUM GOETHESTRASSE 70 HYSTERA.ONLINE

(copyrights Helen Sange, photographer Helen Sobieralski).

The exhibition served as a space for collective exploration of one's position and agency (or lack thereof) within the web of systemic oppressions informed by Endo Violence .

In the space, we welcomed many endometriosis warriors, activists, artists, researchers, and health practitioners - including the renowned endometriosis expert, Prof. Dr. med.

Sylvia Mechsner from the CHARITE Endometriosis Clinic.

Many people walked through the door with no prior knowledge of endometriosis (mainly drawn by colourful lights & funny pink art pieces) and came out as [hopefully infrormed] endo allies.

(copyrights Helen Sange, photographer Helen Sobieralski).

The Endo Violence conversations have also taken place online, with many people sharing their views and experiences via social media & email.

Are you planning on exhibiting this somewhere else?

How can I become a part of it?

What are your next steps?

These were some of the questions I received from the online community. It was clear that the Endo-Violence exhibition was just the beginning of our journey - and, that more work is needed to create space and time for such collective reflection and resistance, coalition building, and action.

the purpose of this tiny essay is to (1) propose an open-ended definition of Endo-Violence & to invite more voices in its cocreation; (2) to inform my INCLUDE+ research project endo-violence temporalities // exploring digital [in]visibilities; (3) to start thinking about the next steps for Endo-Violence & how to ensure they lead to the production of some value for the endometriosis community.

what is Endo-Violence

?

trigger warning: some of the statements touch on the topics such as physical, sexual, emotional violence, verbal, suicide, violence; trauma connected to racism; miscarriages; and blood.

Endo Violence is not meant to have a fixed meaning or a definition.

It is not meant to be seen as a rigid theoretical construct, but as a flexible, open-ended, and community-co-created critical lens to investigate and gain critical consciousness of one's positionality, power dynamics, agency, and [dis]empowerment within various socio-culturaltechnological contexts.

In other words, Endo Violence (and the future editions of Endo Violence Magazyn) are meant to be co-created by/with you.

community's interpretations of endo violence I think of a long history of patient dismissal and patient blaming, one stretching back 2000-3000 years. I think of barbaric treatments like transvaginal leachings, bondage, vivisection, experimental drugs.

I think of overdoses, suicides, the loss of ability and life. I think of the systemic erasure and gaslighting of millions of people, people in pain.

Eileen (they/she)

Endo Violence refers to the systemic and structural injustices resulting in health, social, economic, and digital inequalities of those affected by endometriosis. It encompasses a wide range of harmful practices, attitudes, and behaviours that violate the rights and dignity of individuals seeking support, and services.

Endo Violence does not aim to blame or point fingers at a specific group that might be involved or/and entangled in the existing power dynamics but to holistically co-examine existing power inequalities and oppressions, and to create mindful, cross-sectoral and transnational coalitions to address them.

community's interpretations of endo violence First of all the pain the patients suffer and secondly the violence around the diagnostic process of endometriosis: being dismissed, the violent way they are talked (down) to, having uncomfortable pelvic floor exams, operations, more operations, the pain of possibly not being able to conceive….

And then being abandoned by scientific research…. We are only taking baby steps whilst other areas of scientific research are well-funded and advanced.

Helen Sange founder of Obenrum Untenrum/ Inclusive Gynecology and Sexual Medicine Practice in Berlin @doc_femme_vitale & @obenrum_untenrum

Endo Violence does not aim to blame or point fingers at a specific group that might be involved or/and entangled in the existing power dynamics but to holistically co-examine existing power inequalities and oppressions, and to create mindful, cross-sectoral and transnational coalitions to address them.

Endo Violence refers to a set of beliefs and norms, acts or processes that are harmful or discriminatory towards an individual or group based on their understanding of the intersection of gender with other inequalities/oppressions, (e.g., race, ethnicity, socioeconomic status, age, disability, and immigration status, and many others).

Endo Violence is deeply connected to racism, classism, colonialism, and ableism.

community's interpretations of endo violence

the length of time it takes us to be diagnosed.

That we‘re told our pain is normal.

Rachael Jablo, creator of The Hysteria Project @thehysteriaproject

Examples of Endo-Violence Victims/Survivors might include problems such as lack of research; workplace discrimination; lack of social support; gender bias; taboo around menstruation; sexist beliefs about pain (e.g., period pain is normal).

Understanding endo violence might help us to better understand how to collaboratively imagine and fight for endo-violence-free futures.

community's interpretations of endo violence

Systemic oppression, misogyny, misogynoir, androcentric Western medicine, refusal to acknowledge the humanness of endo patients, lack of support, despair, being sick and tired Emilia @huwoman_emilia

community's interpretations of endo violence

The issues in accessing appropriate treatment are systemic. These manifest in a multitude of forms of bias & discrimination which have a knock on effect to every aspect of daily life.

Rey

community's interpretations of endo violence

my female boss telling me that painful periods are normal & I should grow a pair XLZ (they/them)

Would you like to add your voice to Endo Violence Magazyn #2 contact me studio@hystera.online or via Insta @HY_STERA