Just mentioning periods continues to be a social and cultural taboo around the world. On the last day of Endometriosis Awareness Month in March, we met up with HYSTERA (Dr Alicja Pawluczuk), a feminist technology ARTivist and researcher who creates “bloody, hysterical, and vibrant” artworks to subvert stigma around menstruation. In her fight against medical misogyny, and menstrual justice, the Berlin-based Polish artist has collaborated with international development organizations including the United Nations, the Council of Europe, and UNESCO.
The Beyond Club Culture photography series is an ongoing project by sustainable fashion brand, TNot Too Sweet. By exploring the diverse plethora of talent that lurks extrinsic to Berlin’s infamous club presence, we meet Berliners in daytime mode and chat about how they’ve honed in on their art form and the role Berlin has played during their metamorphosis.
Hi Alicja, could you tell us about your digital art projects? Bloody, hysterical, and vibrant – I think these words sum up most of my digital art projects. I experiment with different mediums and hardly ever have a concrete plan as to what I want to achieve. Photography, collage, gifs, video, sculpture, typography – I use these to get my artivism messages across in both humorous and grim ways. In all of that, I try not to self-censor too much while also feeling super vulnerable about overexposing my [no longer] hidden self. I post my work on social media, then take it down just to repost it again while knowing that the Instagram algorithm will do whatever it wants with my work.
You describe yourself as a feminist technology ARTivist. What does this mean to you? Feminist technology ARTivist is an attempt to crumb all of my identities (e.g. technology researchers, feminist, activist, and artist) into one concise description. My artivism practice is grounded in ‘Feminist technoscience’. I’m trying to explore how/if technologies and social media influence the way we see ourselves and others. Apart from incorporating elements of research into my work, I also used digital media to share my artivism pieces. In a sense, technology helps me to co-create the meaning of work through my interactions with other users (e.g. through comments, messages). The term ‘artivism’ helps to better describe the purpose of my art which is to activate (at least a tiny bit) social change.
What is the story behind your artistic pseudonym, hystera? This might sound like an overly romanticized cliche, but it is true, so there: My rotten hystera (uterus) has become my lens through which I experience the world.
My pain as well as the pain of others has given me the courage to be openly hysterical – and quite frankly, not to give a fuck anymore (well, at least to some extent). The word hysteria originates from the Greek word for uterus – hystera. For centuries, hysteria was used both as a medical diagnosis as a derogatory term describing women that would not fit into the oppressive femininity standards. I’d always fit into both of these categories. Seen as too emotional, too sick [yet also] too loud, too outspoken – I was labeled as hysteryczka (Polish for hysterical) at a very young age. It has taken me years to finally understand the history of hysteria and its impact on the way bodies are still being viewed in the 21st century. In short, my broken hystera (uterus) has been a source of my life-long struggle, but it has also empowered me to do the things that I do today. Saying that I’m not in any way trying to glorify the experience of pain – that is not the aim of my hysterical artivism.
Beyond your research and community education practice, you also create visual art in the form of videos and collages. Why have you chosen digital art as the medium to express your chronic pain? Digital media is something that I know and feel confident around and have experience of using, researching, and teaching it – both in the context of its critical and creative use. It feels natural to experiment with a medium that is somewhat familiar. My art is a combination of different materials (e.g. plasticine, slime, jam, glitter) and formats (e.g video, gifs, collages).
Your online art exhibitions such as ‘Endometriosis’ and ‘Chronic Pain,’ provide a very personal glimpse into your painful experiences with endometriosis. What is your main motivation when creating such artworks? Or is it more of a personal and therapeutic process? My hysterical art has become my way to communicate and advocating on the behalf of others. My art is not my shelter – I do not hide but expose my stories and my normally hidden self. Don’t get me wrong, going public with these ‘sensitive topics’, makes me feel super vulnerable. My main job is technology-related research and I know that being seen hysterical in the academic circles might affect my credibility. However, all of the vulnerability, risk, and shame associated with sharing or talking about my work is also empowering. So, yeah, I guess my artivism gives me a sense of ownership and agency – this must surely be therapeutic.
Having recently moved to Berlin, have you been able to find a community of other feminist ARTivists in the city? Yes, I have connected with several amazing creative souls on Instagram, but would love to connect with many others. I’m quite new to Berlin and am still trying to find my bubble here. This is quite difficult during the pandemic (and my endometriosis!). Either way, I’d love to connect with other activists out there and contribute to their projects or campaigns.
According to research, it is estimated that one in ten people who menstruate suffer from endometriosis, a condition that causes severe pain such as bloating and excessive bleeding. Yet it takes an average of 7.5 years to receive a diagnosis. Why do you think it takes that long to get diagnosed? It’s a combination of (1) centuries of medical misogyny; (2) menstruation being a taboo topic; (3) uterus being viewed as a source of evil that should not be taken seriously – unless it is to serve its reproductive function, and (4) endometriosis being a largely an invisible illness. Centuries of medical misogyny and systemic dismissal of menstrual health as a ‘female problem’ has led us to the point we’re in today – menstruating bodies are seen as inadequate by default (e.g. hysterical) and should not be taken seriously. So, in a sense, menstruating bodies should be in pain because it’s part of their nature (e.g. normalising period pain and heavy bleeding). My personal experience of getting a diagnosis has been traumatic. 14 years of doctor’s appointments and hearing things like: “oh, you just happen to have heavy periods”,” don’t worry, pregnancy will fix you”, and “perhaps your pain is just in your head, dear”. This is not unique – it is estimated that up to 70% of endometriosis warriors were initially misdiagnosed (e.g. IBS, PCOS, anxiety).
Then there is the issue of sounding believable to be taken seriously. As a patient your chronic pain story can be affected by an intersection of factors, as Maya Dusenbery writes in her book Doing Harm: “A white Ivy league college student is more likely to be seen as anxiety-ridden, while a woman of color is more likely to be stereotyped as a drug seeker. A thin woman is told she can’t be seriously ill since she “looks so good!” while a fat woman is told all her symptoms are due to her weight”. Equally important are the issues faced by trans man and non-binary people whose experience of navigating menstrual healthcare have been reported to be particularly traumatic.
Even though it is common for people who menstruate to have endometriosis, it is not a common topic of conversation. What are some common symptoms of endometriosis that you can share with us? Endometriosis is a whole-body disease. Key symptoms pain in your abdominal or/and back usually worse during your period, period pain that stops you from your normal activities, pain during or after sex; pain when peeing or pooing during your period; feeling sick, constipation, diarrhea, or blood in your pee during your period; difficulty getting pregnant. Then there is the emotional side related to the hormonal imbalance, chronic pain, and having your symptoms dismissed again which causes mental health issues.
You mention how you felt heard and supported when talking about your condition on social media and in private groups. Absolutely. Social media has been my source of support for years now. I have learned how to be the ins and outs of endometriosis thanks to amazing endometriosis activists. Still, for anyone thinking about scrolling through #endometriosis content on social media, make sure you do it mindfully. These social media feeds are often filled with stories of pain, suffering, loneliness, cry outs for help. Posts highlighting someone’s inability to get health insurance, suicidal attempts, photos of heavy menstrual bleeding, operation scars, hospitals, gynecological wards – all of these give you a horrifying glimpse of the real-world effects of the so-called gender health gap.