Endo Violence Magazyn #02

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ENDO VIOLENCE MAGAZYN

image created by HYSTERA using DALLE-3

#02

Endo Violence is a collective effort.

It would never be possible without the support of the endometriosis community & other victims/survivors.

This publication would never be possible without your ongoing support.

Triger warning: triggering content might include graphic references to pain, blood, medical misogyny, violence, and death.

by @hy_stera

Endometrisis Barbie sitting on her uterus image created& edited by HYSTERA using DALLE-3

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.

This zine is part of a larger research project, “endo-violence temporalities: exploring digital [in]visibilities” at Leeds University’s INCLUDE+ Network funded by the UK Research and Innovation (UKRI).

THE INCLUSIVE DIGITAL ECONOMY NETWORK+

cripping* my overwhelm: welcome to Endo Violence Magazyn #02 a wee intro note from HYSTERA (dr alicja pawluczuk) written with the support of the INCLUDE+ Team

Let me be honest.

Standing on the shoulders of endometriosis activists, and what’s more – publishing work which is meant to give us visibility – feels overwhelming.

In this short intro text, I’d like to acknowledge and unpack this sense of being overwhelmed and allow myself to take a genuine and critical analysis of how my personal story and power position might influence this process; and what types of limitations we should consider in the context of our community. I’d also like to welcome you to this space and provide some words of introduction about the artists, activists, and writers featured in this magazyn. “our stories this anthology of suffering that no one is willing to read minimised reduced convoluted obscured” The above excerpt comes from “Now You See Me”- a poem by Nikita Ashi Chadha. I see it as a powerful and painful reminder that endometriosis stories are often overshadowed by centuriesold stigma around gendered suffering, pain, and menstruation.

This can be found in how some of the endometriosis accounts of suffering, surviving, and thriving are often silenced, scrutinised, and algorithmically ‘Invisibilised’ and 'disappeared', while others get to be picked up by the mainstream media to showcase examples of sensational suffering or miraculous recovery and resilience.

As I’m diving into these topics of digital [in]visibility within endometriosis communities, as part of my research project at the University of Leeds, I continue to learn how by making themselves visible online, many disabled people are challenged by ‘systemic disbelief’ (Hill, 2023).

Earlier this year, I wrote about the public shaming of chronic illness and invisibly disabled communities by The Sun newspaper – which has managed to vilify the entire community of ‘sick girls’ for being hysterical and challenging the existing medical world order – and imply that these hysterical girls should therefore be silenced. Being dismissed and questioned is something that many of the Magazyn #02 contributors describe in their accounts.

In “A Feminist Theory of Violence: A Decolonial Perspective ”, the French political scientist, historian, and activist and public, Françoise Vergès (2022) talks about how vulnerable communities are often “relegated to contemporary zones of nonbeing” (2022: 21).

I feel that many of us victims / survivors of endo - violence - have become violently framed as ‘invisibilised bodies’.

The purpose of this magazyn is to challenge these zones of nonbeing and to co-create space where our invisiblised narratives are brought to the fore. In this edition of the Endo Violence Magazyn #02 you can see how anger, grief, alienation, exhaustion, and pain can be expressed in a variety of artistic forms.

From powerful self-portraits by Ines Rychnik and Rachel Jablo, to playful (yet very painful) visualisation of endometriosis by FreshlyPeeledOrgans and Steph – this issue showcases diverse approaches to express one’s own and the collective experience of endo violence.

I might be naïve, but I’d like to see endo violence as a collective meaning-making exercise, where people from different backgrounds get to co-create their version of the endo violencefree world.

For example, I see Allison Rich’s striking collage work (featured in this issue) as a tapestry of the process, where different visions and ideals collide to create pathways for solidarity-building and transformative justice. I hope that our work will lead to tiny bits of social change. If anything, these pages will provide evidence of those trying to make it happen.

Now, let’s make it clear - the task is indeed overwhelming.

I’m aware of my limitations and the bias I bring into this process. Despite working in and researching participatory processes for over a decade, I still feel like getting the balance between self-centred saviour-like narratives (e.g., “Oh, it’s not about me, I’m here to give the community a voice”) and preaching the stories of empowerment are overly ambitious agendas.

I’m lost in these strange spaces between being too much or not enough. Saying too much but saying too little.

As you will read in magazyn #02, in her personal essay, Laney Lenox - an anthropologist, researcher and writer - calls out “the violently ableist cultural narrative that value is directly tied to productive output”. Laney’s words remind me about how my own internalised ableism and productivity cult have informed my work for years.

To what extent have these informed my work with the endo violence project and endo violence community? Is this where the overwhelm is coming from?

The indicators of impact or success are often packed with assumptions and beliefs about of how things should get done – be it art or community participation. Most of these assumptions are grounded in the neoliberal, ableistic, neuronormative, and extractive understanding of the world. Such narratives can be found in the context of [invisible] disability or chronic illness, where fetishiszation of productivity, and self-empowerment and self-optimisation get in the way of a realistic analysis of systemic injustice.

As endo-violence victims / survivors, we are often expected to get from point A (e.g. being unwell) to point B (e.g. recovery). To work on ourselves, and to become inspiring individuals/advocates/ warriors or social media influencers.

To situate myself (and the Endo Violence magazyn) outside of these narratives, I’d like to use Crip Time as a critical lens. As defined by Critical Disability Studies Collective, Crip Time is “a concept arising from disabled experience that addresses the ways that disabled / chronically ill and neurodivergent people experience time (and space) differently than able-bodyminded folk” (2023: n.a.).

Crip time might helps us to deal with the overwhelm related to the co-creation of this magazyn. Crip time might also help me personally to – ground myself in my body and my mind – both of which can be labelled as disabled.

Crip Time might also be useful in context of the collective meaning-making and in the potential endo violence-free futures. In line with the work of Alison Kafer (academic specialising in feminist, queer, and disability theory) we can adopt Crip Time as a tool for mobilizing against endo violence while embracing multiple temporalities, slowness, empathy, and collective care. Crip Time in our endo violence free world making might include exploring alternative ways of being, organising, resting, and civic action.

How about if – for now – we carefully envision Endo Violence Magazyn as an experimental space where voices converge, narratives unfold, overwhelm does occur occasionally, and solidarities are forged? dr alicja pawluczuk/HYSTERA founder & editor of Endo Violence Magazyn www.hystera.online www.alicjapawluczuk.com @HY_STERA a.pawluczuk@leeds.ac.uk studio@hystera.online

* Crip is sometimes used as a proper noun, "Crip," and sometimes even as a verb, in which "cripping" something means applying a disability justice lens to it.

image created by HYSTERA using DALLE-3

what is endo violence?

Endo-Violence refers to the systemic and structural injustices resulting in health, social, economic, and digital inequalities. 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 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) (Pawluczuk, 2023).

Endo Violence is deeply connected to racism, classism, colonialism, and ableism. Black women are less likely to be diagnosed with endometriosis (Perro et al, 2023). In the case of trans people, doctors may also be quick to blame every symptom on being trans or gender-affirming care (Neufeld & Leggott, 2021).

image created by HYSTERA using DALLE-3

Nikita Aashi Chadha (they/she) is a multidisciplinary creative.

They are a published poet, writer, editor, and workshop curator.

Nikita is an established facilitator, from designing and delivering bespoke creative workshops to holding ongoing closed spaces for intersectional folks who have experienced racism.

Nikita advocates for an intersectional lens and approach, and is committed to spotlighting the “other”. They are particularly interested in the power of creativity and how it intersects with disability and identity. @nikkaayyy_c & @didacticdiaspora www.linktr.ee/nikitaashichadha www.didacticdiaspora.com

out of sight out of mind

by Nikita Aashi Chadha my pain is not a public spectacle *a spectacle has to be seen* i perform for the world and an audience of none silence surrounds the stage there are no supportive cries for the hero of this piece separate different “other” hands uplift you they shower you with applause but they stay still for my soliloquy there is no standing ovation

no tears, no praise the only thing that remains here are the moments I become undone the moments I die a small death i will be remembered then i will be noticed. immortalised this pain this body (centre stage) remains out of sight, out of mind the screams are deafening if only you would learn to listen.

Now you see me

by Nikita Aashi Chadha

i never knew you my mouth had never spoken your name my eyes have never seen your face but you remain here with me etched into my memory the distance between us is well travelled well documented but we live – we exist in each other where you end, I begin you come to me in moments of stillness engulfed in light a piercing white light it surrounds you

you are finally seen in this succinct moment of darkness like you should have been

every night in my dreams I save you I save us all but that is just a dream all that remains here and now are stories our stories this anthology of suffering that no one is willing to read minimised reduced convoluted obscured words on a page images on a screen a story that ended before it had even begun we will carry it forward the only legacy we are given or that we leave behind yours lives on in me.

Alice Brunello Luise "Through the lens of my camera or the treasures discovered in antique markets, I embark on a creative journey that melds the art of collage with mixed media techniques, serving as my vehicle to explore profound themes of Identity and Intimacy. I am constantly captivated by the allure of the firstperson singular and the forms of my pain: Endometriosis, and the rich tapestry of inner life.

My artistic quest is a commitment to the art of self-narration, intertwining the threads of reality, dreams, and desires into a vast abstract landscape of human existence marked by uncertainty, confusion, and the poignant struggle to embrace change. Our minds, akin to secret chambers within our souls, are the sanctuaries that allow us to embody our true identities, align with the essence of our belonging, and the profound realities that matter to us.

It is in this sacred space that my artistic journey unfolds, where the interaction between inner and outer worlds converges to create a narrative that seeks to transcend the boundaries of perception." www.alicebrunelloluise.myportfolio.com/work @alicebrunelloluise_ph/

Alice Brunello Luise 2022 “Shape of my sorrow” mixed media on paper

Alice Brunello Luise 2022 “Shape of my sorrow” mixed media on paper

Laney Lenox is an anthropologist, researcher and writer living in Berlin, Germany. Her research employs the anarchist ethos of consensus building and applies it to garner more nuanced and inclusive understandings of contentious pasts. Her work falls broadly into anarchist theory with an anthropological approach to fieldwork.

She is particularly interested in viewing linear time as a social construct and in understanding how this relates to power structures. She employs complex methodological tools focused on participatory practice to garner more nuanced and inclusive understandings of contentious pasts through a transformative justice lens.

She can be contacted at: lenoxlaney@gmail.com www.laneylenox.com

"What is Lost/What is Gained" When I opened an internet browser and typed “chronic illness losing”, the first suggested search was “chronic illness losing friends.”

For years, the medical community could and would not give me answers about what was happening to my body.

This meant I also had no answers to give my friends. During the final two years of my PhD, I used dissertation-writing as an excuse for canceling plans. The truth was that I was frequently in pain and almost always exhausted. Without knowing that these symptoms were caused by endometriosis, it was easy to write off almost anything as academic burnout. Working on a thesis also felt like a safe excuse because it was one still bound up in productivity. It made sense for someone in their late twenties to become exhausted through the process of producing a doctorate.

This allowed me to continue participating in the violently ableist cultural narrative that value is directly tied to productive output. It also allowed me to, at least on paper, keep my social network intact.

This changed in April of 2022 when I moved to Berlin to be with my husband. Suddenly, I needed to meet new people and establish new friendships.

My debilitating chronic fatigue made me seem aloof and distant. I would often have a lengthy coffee date with a new potential friend but fail to follow-up on subsequent invitations. When, after a successful friend date, a new acquaintance expressed a desire to get a drink one evening or invited me to a party, I could never wholeheartedly confirm that I would be available.

As a child, I disliked when adults answered “we’ll see” to my requests to go somewhere and do something. Yet, my unpredictable energy and pain levels mean that requests to hang out from potential new friends are usually met by the same kind of ambiguous answer I dreaded in childhood.

Moving to a new city is filled with a kind of potential I have as yet been unable to fully enjoy and embrace. Finally receiving an official diagnosis via visits to specialists and a surgery fill me with a tentative hope that my Berlin can expand beyond my apartment and my flat. As much as I love the part of the city I now call home, it is pain and exhaustion that have prevented me from exploring the city further and establishing what a dynamic and multi-faceted life in the city might look like. After a pain flare-up or a particularly difficult medical treatment, the world feels briefly new to me again and full of possibility. The simple act of standing up to make myself a cup of tea is nothing short of miraculous when, only moments before, my pain was so intense that I accidentally bit a bruise into my hand.

In these moments, I remember the community that has risen to the occasion of caring for and about me through these last few months. This includes my mother, a lifelong sufferer of endometriosis herself whose decades of lived experience rival the knowledge of many doctors.

This also includes the founder of this zine, Alicja, who introduced herself to me on a train when she overheard me talking to a friend about my struggles getting an endometriosis diagnosis. I think it is right to give myself the space to grieve tangible time out of my life, and even friends, that I have lost to this disease.

However, as I stir a cup of Earl Grey and look out the window of the flat that I share with a devoted husband, I am filled with warmth and hope that these radical communities of care that help us combat endo-violence in all its forms are building towards a more inclusive world for us all.

Angie Mashford-Scott is the founder of endokind, an Australian counselling practice for those with endometriosis. Since the 18 year delay in getting her diagnosis, Angie has had multiple surgeries and serious postsurgical complications. Following her most recent surgery, she was rushed back into hospital and admitted to the Intensive Care Unit (ICU) with life-threatening sepsis. Like many endo patients, she questioned herself and the severity of her deteriorating condition and delayed going back into hospital, which almost cost her her life.

Angie is passionate about building awareness of how significantly endo impacts on one’s mental health and quality of life - including the long-term impacts of trauma - and the importance of specialised mental health support.

Angie believes that art is a powerful therapeutic and advocacy tool for those with endometriosis. Her counselling and creative work views endo and women’s healthcare through a feminist and social justice lens. endokind.com.au @endokind_au

This piece is part of a series that juxtaposes a young girl’s joy and innocence with the pain and assault endo inflicts on one’s body. It is titled ‘When I grow up’.

Rachael Jablo is a chronically ill, queer, Jewish, Berlin-based American artist who works with photography, installation, collage and storytelling to discuss issues around illness, the body, and gender. Her work has been seen in a solo exhibition at USC’s Hoyt Gallery, at the Torrance Museum, and at the Museum für Fotographie in Braunschweig and has been featured in Ever-Emerging Magazine, on WNYC’s The Takeaway, and Slate. Her recent work, The Hysteria Project, received a Neustart Kultur Grant for Innovative Arts from the German Government in 2021-2022. She is currently creating art workshops from The Hysteria Project for medical students and doctors. www.hysteriaproject.org @thehysteriaproject @rljablo

It took me over twenty-five years to be diagnosed with endometriosis, with people telling me for decades that passing out from pain was “normal.”

Early in 2021, I was fixated on one experience in 2019, seeing that I had a new diagnosis- adenomyosis- on my medical records that my doctor, a local endometriosis specialist, had never informed me of. He insisted he had told me, but I take notes, and I’d had to look up “adenomyosis” upon seeing it in my files. When I asked for a second opinion, on the diagnosis and treatment, he fired me as a patient. The second I questioned his authority, he refused to treat me.

This, to me, is endo violence in a nutshell. We are treated like children, kept in the dark about our bodies, and are gaslit about what we know to be true. As I pondered all of this, I made this selfportrait, wanting to make all that had been unknown to me for so long, and is often unseen on scans, visible. Making this was a huge breakthrough for me. It led to first, making portraits of other people’s uteruses who had similar gynecological issues, and eventually, listening and transcribing their stories as well, creating The Hysteria Project.

We need more venues where we can freely share the narratives of our bodies, to unburden us of some of the violence we encounter in our medicalized lives.

self-portrait with endometrioma, adenomyosis, and fibroids

by Rachael Jablo @thehysteriaproject @rljablo

Allison Rich (she / her) is an organizer, strategist, and communicator that uses art to explore a more livable future and to translate intersectional ideas.

Allison co-founded the Baltimore Green Schools Network, Filbert Street Garden, and Maryland Environmental Health Network.

She was a Chair on the Climate Change Commission, launched a climate news bureau, developed reproductive justice literacy workshops, and Directed Miami Dade College’s Earth Ethics Institute.

Allison is certified in climate change and health communications from Yale and in sustainable development from University of Cambridge. She lives in and is from Miami, FL, USA. Her film is featured

by Chroma Art Festival, Period Movement, and Women’s Voices Now. @endometriosishealthnetwork @alligatoralgae

Not Normal is an autobiographical film that explores a culture of period taboos and dismissing pain for the 1 in 10 people assigned female at birth living with endometriosis. It combines iPhone recordings, self portraits, paintings, and archive images to form 213 moving collages.

A woman struggles to survive her painful periods long enough to find answers for her strange symptoms. She discovers a new normal as she fights to Scan this QR Code to watch the film Not Normal receive a diagnosis and seek treatment

“I thought it was my fault. For not trying hard enough, or missing yoga, eating sugar, staying up too late.

Being too stressed. What did I do this time to cause so much pain before, during, and after my period?

I always tried to work twice as hard. I struggled to keep up, wear pants, to succeed in school, sit for work, with painful sex, simple movements, and unpredictable symptoms. I was physically and emotionally sensitive to everything. I would not listen to myself. I knew my periods were weird but dozens of doctors said it was normal.”

Not Normal Allison Rich

Iness Rychlik is a Polish-born artist, based in the UK. Despite her severe myopia, Iness has been dedicated to visual storytelling since her early teens. Iness Rychlik is recognized for her dark surreal selfportraits; exploring themes of pain, solitude and vulnerability.

Since she suffers from a chronic skin condition, Iness uses her own body as a canvas for artistic expression. She draws on her deeply personal experiences, often reflecting on growing up in a conservative and patriarchal society. The subtle elegance of Rychlik’s compositions contrasts with an underlying aura of brutality. Her conceptual photographs provoke the viewer’s imagination, rather than satisfy it. Featured by ‘The British Journal of Photography’, ‘Cultura Inquieta’, ‘Beautiful Bizarre Magazine’, ‘Hi-Fructose Magazine’, ‘L’Officiel Italia’, BBC Scotland. www.inessrychlik.com @InessRychlik

Endometriosis: A Study of Pain

by Iness Rychlik

A self-portrait taken to document my life-changing surgery.

Any shade of red pales in comparison to the unseen pain of endometriosis – a condition where tissue similar to the lining of the womb grows in other places. While it feels like having your organs wrapped in barbed wire

by Satan, serious health concerns about menstruation are often dismissed. Despite my high pain threshold, I experienced years of nauseating pelvic pain and heavy periods that were deemed ‘normal’ in the doctor’s office.

When some progress was finally made, I was hit with the news that the waiting time for my operation would be around 3 years. After much consideration, I made a difficult decision to pay for the surgery myself and have it done sooner in a private clinic in Manchester.

The surgeon removed multiple cysts, including one from inside of my ovary measuring nearly 6cm in diameter (!).

I’m sharing this deeply personal story to break the menstrual stigma and encourage anyone facing similar issues to advocate for their health. There was nothing ‘normal’ about the pain I had been dealing with since my teens and it breaks my heart I was ever made to believe otherwise.

Steph @howlingkittendoodles/@surviving.endometriosis Steph is an Australian illustrator who began documenting her journey after a 17 year long battle with doctors before finally receiving a diagnosis of Endometriosis in 2021.

Her artwork varies between abstract uterus monsters to chibi creations that she hopes empower people to speak out about their struggles. Becoming an advocate for such a wildly misunderstood and misdiagnosed disease is a driving force behind her desire to share her work. It shouldn't take anyone 17 years of intense suffering before a doctor finally takes their pain seriously.

Steph is currently undergoing fertility treatments to fulfil her dream of having a family. After multiple failures, her art began to have a strong focus on uterus monsters as doctors have begun to describe her uterus as hostile and she wants others to be able to relate and resonate with her work as hearing those words can be devastating.

She will be undergoing her third excision surgery in October 2023 and hopes to incorporate this experience further into her artwork. howlingkitten.co

Uterus Monster with Mushrooms

by Steph (howlingkitten.co)

FreshlyPeeledOrgans began creating endo-inspired art following her initial diagnosis. The art served as a way to communicate her pain when words failed her.

She began to share her content through her Instagram @freshlypeeledorgans when she realized just how many people truly felt as alone, just as she had, as a mission to give everyone a place to feel understood.

"Witnesses of Horror"

by Freshlypeeledorgans

"Witnesses to the Horror" Part 2

by Freshlypeeledorgans.

This addition was created following her 3rd excision which required a total hysterectomy and salpingectomy. She was given the confirmation her former surgeon had indeed abalated and blatantly left lesions behind.

Are you interested in featuring your work in the future [limited] editions of the Endo Violence Magazyn?

Make sure to follow @hy_stera and INCLUDE+ Network for updates.

You’re also welcome to contact dr Alicja Pawluczuk at a.pawluczuk@leeds.ac.uk or/and studio@hystera.online.

THE INCLUSIVE DIGITAL ECONOMY NETWORK+

references & works that inform this publication: Neufeld, B. & Leggott, M. (2021). Endo Pride: The Queer Endo Experience.

Chazan, M. (2023). Crip Time and Radical Care in/as Artful Politics. Social Sciences, 12(2), 99.

Chen, M. Y., Kafer, A., Kim, E., & Avril Minich, J. (2023). Crip Genealogies (p.

380). Duke University Press.

Holowka, E. M. (2022). Mediating pain: navigating endometriosis on social media. Frontiers in Pain Research, 3, 889990.

Hill, S. (2023). Navigating visibility and risk: disabled young women’s selfpresentation practices on social media. Journal of Gender Studies, 1-12.

Kafer, A. (2013). Feminist, queer, crip. Indiana University Press.

Lugones, M. (2010). Toward a decolonial feminism. Hypatia, 25(4), 742-759.

McRuer, R. (2006). Crip theory: Cultural signs of queerness and disability. NYU press.

Perro , D., Weckesser , A., & Griffith , V. (2023). Endometriosis: black women continue to receive poorer care for the condition in The Conversation.

Samuels, E. (2017). Six ways of looking at crip time. Disability studies quarterly, 37(3).

Samuels, E., & Freeman, E. (2021). Introduction: crip temporalities. South Atlantic Quarterly, 120(2), 245-254.

Vergès, F., & Thackway, M. (2022). A feminist theory of violence: a decolonial perspective. (No Title).

THE INCLUSIVE DIGITAL ECONOMY NETWORK+

THE INCLUSIVE DIGITAL ECONOMY NETWORK+

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