Introduction
Commons Library Director Holly Hammond chats with activist Allison Rich and activist-scholar Dr Alicia Pawluczuk about their creative activism and the Endo Violence Collective. The collective works to amplify the voices of those affected by endometriosis and foster a rich, inclusive dialogue that transcends conventional boundaries.
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Welcome
Holly Hammond
Hello and welcome to Commons Conversations. I’m meeting now with Allison and Alicja from the Endo Violence Collective, and I wanted just to start with if you’re able to introduce yourselves and you know what your connection is to the collective.
Allison Rich
Hi, I’m Allison Rich, and thank you so much for having me here today. I’m the co founder of the Endo Violence Collective, and I’m also an artist and an organizer based really from the environmental justice world, and I am also an artist who made a film about endometriosis called ‘Not Normal’.
Holly Hammond
Thanks Allison, and you are joining us from the United States?
Allison Rich
Yes, it’s a pleasure to join you here today from Miami, Florida, USA.
Holly Hammond
Great. And Alicja.
Alicja Pawluczuk
Hi, I’m Alicja. My artist name is Hystera. So I go by Dr Alicja Pawluczuk in my research, and then Hystera in the context of my art.
The story of Endo Violence: it kind of started a few years ago, when I set up an exhibition in Berlin, Germany, and when I sort of realized, after years of living with endometriosis and also dealing with all the systemic injustice within the endometriosis community, I realized that the system is quite violent. So I came up with this idea of Endo Violence, and I invited community to co create its meaning. And so as I went along, there was different steps, you know, that I went through, and one of which was setting up a little magazine around Endo Violence.
And that’s how I came across the incredible work of Allison, the film, and that’s how we got connected. And Allison was featured as one of the artists in the second edition of the Endo Violence magazine. And she had this incredible energy. And she really was this visionary person that comes in and says, hey, look, we can make things happen despite our limitations and, you know, disabilities, and that’s how we set up the collective.
Concept of Endo Violence
Holly Hammond
I’m curious about the framing of ‘violence’. Have you found that’s really resonated with people who are living with endo when they kind of hear the concept of Endo Violence?
Alicja Pawluczuk
In the context of the early work, I think ‘Endo Violence’ as a concept was kind of co created by the community.
I based my initial understanding of Endo Violence on whatever the community provided me with and that was, you know, the digital endometriosis community. So I did a thing online, and then that’s how I gathered the first kind of concepts around that, and the first lived experiences and it really made sense to many people that it is a systemic issue, that is rooted in, you know, centuries of misogyny and sexism and exclusion, racism and how it is a form of violence.
Yeah, it is excluding you. It is making you invisible. And so I have lots of stories about people resonating with the concept. Although not without criticism, because I had one person actually telling me that maybe, as a non English speaker, as a Polish person, maybe I don’t fully understand what violence means, because in this context, that might not be the case.
Needless to say, that person didn’t have endometriosis. So it’s just interesting, and I am aware that it’s a very strong word. But I think Allison has like, she came to it when the first idea of Endo Violence was out there. So I think she is a person who can say about how it actually resonated with her and how she built it forward.
Holly Hammond
Yes, please.
Allison Rich
So I was so excited to discover the work that Alicja was doing with University of Leeds and on her own, also to give a word to what we often consider to be an invisible disease, because I feel as if Endo Violence does, in its own right, give visibility to the many forms of the way that living with endometriosis and navigating ableism in the world can affect us.
…and so I think what Endo Violence does really well as a term, and as an idea and as an ideology for how we can movement build across a lot of silos and disciplines that may not interact often enough, is it helps us to understand the ways that endometriosis is not just a physical disease.
It’s not just lesions that may grow throughout the body that we are yet to really understand what our lesions are made out of, but also the ways that we may encounter microaggressions, whether it be in the workplace not having the accommodations we need to succeed, or in our own families, facing violence in terms of not being believed or just speaking to the delays in diagnosis.
I think Endo Violence really speaks to the emotional, political, cultural and social aspects of navigating the world with what I view almost as a double consciousness of living with endometriosis.
Holly Hammond
Yeah, that is so great to hear in terms of how individualized health can be, you know, you’re an individual with this condition, and this is your individual experience and your individual problem.
When we go to a framing of Endo Violence, we can see, you know, the shared struggle that’s there, and the fact that these are societal forces at play. Alicja, was there something you wanted to add in?
Alicja Pawluczuk
Yeah, I was just thinking that hopefully by the time this podcast is out, that our publication, the book that I have been working with, but also people from the collective have contributed to, will provide a more coherent definition of what Endo Violence might mean and within the research that I’ve been doing, it really is about the multi layered and very complex network of injustice around endometriosis.
Because one of the things that I’ve noticed is that very often we do look at endometriosis in isolation. And so perhaps there is, you know, the medical aspect, and there’s this and that, but there’s so many different layers out there, right? And it’s more about how you navigate the world with the awareness that you might have endometriosis and you might not have access to basic gynecological care. That means you might be disbelieved by other people.
You know, so it’s like the structure of all the different things that you need to navigate and I feel like, by giving it a name, and within the framework, or whatever we want to call it, Endo Violence, I identify different types of violence, right?
So there is the epistemic violence, for instance, erasure of knowledge, certain types of knowledge.
Why is lived experience not adequate as a form of knowledge?
Why is there a research gap?
Why is there, you know, gender health gap in general?
So it’s whose voices are being heard and so there’s different forms of violence that will be there and I still can’t decide whether it’s a framework or a thing. Because, yeah, I am within academia, but I also want to make sure that this is something kind of tangible and something that we can share, while acknowledging that there are so many limitations, right, like you cannot create something that will cover all of the injustice that is out there.
Allison Rich
And before we head too much more into the conversation, I think it’s really important that we notate with Endo Violence that something I think it does really well is also include the ways in which systematic and structural violence affects communities disproportionately.
So Alicja and I are both people that present as female and as white, and I just want to name that as a privilege that we have, and also acknowledge that there are many communities that experience structural violence, that do experience Endo Violence differently based solely on the nature of violence, and so let’s just name that there are also people who are maybe assigned female at birth, or may not identify as women, who also suffer from endometriosis and also the delays in diagnosis that may be exasperated by class and also by race.
Holly Hammond
I thought for our readers, I’ll just quote a little bit of your site:
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 behaviors that violate the rights and dignity of individuals who are seeking support and services.’
And so, yeah, this concept has been a great way for people to connect and kind of share their experiences. I found it really moving to read in the magazine different people talking about their experiences of living with endometriosis and coming up against this violence.
Not Normal Film
Just really also want to acknowledge how creativity has been really central to your project. So related to that, Allison, what drew you to create the film that you did, Not Normal?
Allison Rich
Thank you so much for that question. So I started creating Not Normal for a few different reasons.
One was that I myself, for 18 years, was told that my painful periods were normal, and essentially told that the symptoms I was having were in my head due to stress. And I myself was also misdiagnosed with Crohn’s disease when I actually had deep infiltrating endometriosis of the colon. And it took me probably about 10 doctors misdiagnosing me before a pelvic physical therapist named Justine, actually told me about endometriosis.
From there it was a rapid education into endometriosis care and how to navigate really complex medical systems, especially living in a state like Florida, where I think it’s international news at this point, that period literacy is under attack, that period education is under attack in our school systems here, as well as all healthcare related to people assigned female at birth or gendered medicine. And so after traveling across the country to find a surgeon who could operate on more advanced and deep infiltrating endometriosis, extra pelvic endometriosis, I needed to really digest and process the experience of not being believed, of facing violence across all aspects of my life, from my own family to my career to the doctors that told me it was all in my head.
I also am really into DIY Art, do-it-yourself art, and I had a very limited budget, and so I just started playing with how I could use Canva and my iPhone to start to create a timeline to my own story. And along the way, I really thought it was essential to share the information that I had found about endometriosis, because I could not believe how difficult it was to just find somewhat accurate information about endometriosis and to be able to put that together into a 20 minute film.
I was really excited about the opportunity to create a free resource that people could watch wherever they were, to feel less isolated in our own communities, and something that we could share with people to say, I might not be the only one who experienced this and at the time, there were also other films about endometriosis that did cost money to view, and I just felt that we needed more openly accessible resources.
And as an eco feminist, I really wanted to create biodiversity, in terms of the narratives that were being used to tell our stories. I really believe that we need diverse creative mediums to bring visibility to this disease and also to make sure that folks know that it’s not linear, that healing is not linear, and that just as the disease is so individual that there’s going to be really individual stories and experiences in navigating the disease. And it was actually not well received in the US.
I really encountered a lot of gatekeepers in the digital space that were unwilling to share the film. And so when Alicja found the film and invited me to share it through the second edition of the magazine. It felt like kismet, for lack of a better word.
It really felt serendipitous to find Alicja and to find this larger community of artists that she had curated and that she had found throughout the world that were creating creative work to bring visibility to each of our experiences and also, I think we were all just inspired to curate the magazine because of Alicja’s amazing work to create her artwork as well that brings visibility to endometriosis.
Visibility
Holly Hammond
What do you think the particular challenges are around what gets called invisible disability or invisible illness? Why is it so important to shine a light and create more visibility, given many people’s experience of the illness not being seen or acknowledged or recognized?
Allison Rich
I think something that people with endometriosis or diseases that are considered invisible often encounter is: ‘But you don’t look sick, but you look fine. How can you ask for an accommodation?’
You know, it really is microaggression on every single aspect of society, and our ability to navigate achieving livable qualities of life and I think the invisibility, that is not invisible at all. I think that the disease is actually quite visible in our society. I think it’s visible when we find surgeons or medical teams that understand the disease.
And I believe that the work of the Endo Violence Collective, and the reason why it’s so important that it is an international collective, is to use digital spaces, or non traditional cultural spaces, to lift the conversation of endometriosis outside of these digital communities where so often we may connect, into larger cultural institutions that really allow for folks to understand that –
A) the disease exists, and that
B) that it’s really individualized, and
C) that people with endometriosis deserve to have support and to be seen and to be heard.
Alicja Pawluczuk
I was just thinking about this idea of invisibility and visibility, and how, yes, in recent years, we have become hyper visible within social media, which is absolutely amazing, and lots of incredible things have happened but this visibility has a structure. There’s a power behind it. Who gets to be seen, and on whose terms, what is the algorithm going to show us? Right?
So even when Allison mentioned this story of trying to get into the mainstream with her film which wasn’t ticking certain boxes, and how perhaps that would not be considered as a right way to raise awareness. And also finding that space where something is visible in a meaningful way.
What is important to understand with this visibility is that hyper visibility, or visibility doesn’t mean inclusion, right?
Because we are very much aware of all these different tactics that are out there to do this performative inclusion and all of those things and so I really feel that there’s more to that than just making it visible and I guess one of the things that I often struggle with is how many more stories of disbelief or struggle or pain do we need to share before someone’s going to take it seriously?
There was an article that I wrote two years ago about the Sun, a British newspaper, accusing girls of causing moral panic online because they shared their bodies in a way they wanted to, they shared pictures of them being sick and apparently they’re begging for likes and so to me that invisibility, and here I’m talking about it in relation to endometriosis as an invisible condition.
I see it as a form of silencing that has been there for many centuries, right? So with the myth of hysteria and many people have written about it as well, and we are experiencing it as well. So my worry sometimes is that visibility on its own might not lead to systemic change.
Holly Hammond
That’s really relatable. A saying was coming to mind, ‘it’s only invisible if you don’t know what to look for’.
So for many of us, it’s very visible to us. But I’m also conscious of myself, you know, I move between these different states of well and unwell.
Being able to be perceived as able bodied, but also at other times, just not being able to be visible, because I’m bedridden and no one is seeing me in that moment. But also how I can pass as well. So I’m thinking about right now, I’m sitting here with you. I’ve got my TENS machine on that’s sending electrical pulses to interrupt my pain signals to my brain. I’ve already taken two kinds of medication. I’m going to take more medication after I get off this call because I didn’t want to take it before the meeting, because it can cause nausea. You know, over the course of the day, I’ll be taking several other kinds of drugs.
After this call, I’ll lie down for a while to give my body a rest. So all of that management is going on all of the time. It’s a lot of work to be able to continue to be productive and doing our work and maintaining our relationships and connections in the world.
Allison Rich
And just to expand on that, I’m also sitting here with a lot of adaptive equipment, whether it’s my seat and having space, as someone who has rectovaginal endometriosis.
But when we talk about productivity, so often the expectation is that not just people with endometriosis, but anyone with a dynamic disability is asked, essentially, to mask their symptoms, to appear productive and to meet more of a capitalist standard of productivity.
Whereas the work that we do to maybe save our own lives is often not viewed as productive. You know, something that comes to mind that is really basic, is just how many times in a job you may be asked, ‘well, even if you don’t feel well enough to go to the meeting, can you just go with your camera off?’ And that in itself is a form of a microaggression, and to tie it back into visibility, we have to often ask ourselves, whose stories are being told, and how are those stories framing productivity?
This idea that with health, you are sick, you receive an intervention, and you get better, and by getting better, you go back to normal. And normal should be being productive in the way that you’re able to achieve, being able to work and make money for adults, or for young people being able to go to school and meet the same exact standards.
And so I hope something that we are starting to explore with Endo Violence Collective and the many artists and writers and creative work and health experts that we’re connecting to, is how do we diversify and create diversity within the ways that we view and tell stories about endometriosis.
Alicja Pawluczuk
When we talk about Endo Violence, I think it’s important to recognize the Endo Violence within ourselves. And this is something that I tried to do while I was writing the text.
Is the amount of expectations that I have for myself, the amount of violence that I put myself through, even as a part of the community, right? Am I representing everybody as an Eastern European migrant? Should I be sharing stories that are perhaps representing all the other regions? Who am I?
So it’s not just within the Endo Violence, in terms of my internalized ableism and productivity regimes, because these have ruled my life, and they still do. But then again, I’m also learning that I am neurodivergent, so the way I see work and passion is slightly different. I operate in a different time zone altogether, because sometimes doing things actually helps me to feel better.
But I also call myself out very often thinking, ‘Oh, you are like perpetuating capitalism’, but no actually, neurodivergent rest is different, and perhaps it is about also accepting these different ways of being, which I know you need to be in a position of privilege in the first place to be able to do that right, because you need to have enough money to pay for your bills. You need to be able to have food. All of those things are crucial. And here I am, I can talk about Endo Violence, but the thing is that I have these mostly basic needs met. So I think there is that part as well.
But one thing that I would like to emphasize here is that internalized Endo Violence, and the way it manifests in your everyday life, and how we have adopted these violent structures as a way of survival, in a sense, because we need to reenact certain standards in a certain way. You have to be cute and nice, but not too intelligent when you go to the doctor. You’ve gotta look good, but not too good, and all of these things, you know, the performative nature of that. So maybe it’s just picking little battles with our internalized Endo Violence and seeing what we can do step by step.
Capacity
Holly Hammond
I’m really interested how the Endo Violence Collective, how the fact that your crew are living with chronic illness, and you know, capacity may go up and down, are there ways that you found to work together that allows for that, and, you know, supports people to be in different levels of contribution at different times?
Allison Rich
Yes. Well, first of all, just to speak to what Alicja just mentioned with internalized Endo Violence.
There’s so much work to be done to unlearn that violence and to stop gaslighting ourselves. So I just want to say that if you’ve ever asked yourself, am I just stressed? Is that why I’m feeling so bad? Did I just eat the wrong thing? Did I just not exercise enough? These are all little ways that we live through internalized Endo Violence.
And as part of that, I come from a nonprofit background, and in the US, the standard of nonprofits is that your passion equates to the amount that you’re able to almost physically harm yourself. So if you’re able to work, I know that might be a concept that resonates with a lot of folks, and it’s not sustainable in the truest sense of the word. I, prior to getting sick, often operated in a way of just simply disassociating from my body and from any type of feeling to the point of urinating on myself because I couldn’t feel my bladder. To the point of, you know, passing out in supply closets because I wasn’t aware of how much I was pushing myself past capacity.
Crip Time
And so one of the things that excited me most when I jumped into starting to edit Alicja’s work with Endo Violence number two, was the essay that she created around the concept of ‘crip time’. I think crip time is a really important concept that we try our best to experiment with within the Endo Violence Collective.
So I think as people assigned female at birth, we’re often taught to apologize simply for existing, and there’s a lot of unlearning that we’re exploring in terms of, do we need to apologize when we have a delay in an email?
Or can we assume that we’re living with a dynamic disability that has high highs and low lows, and there really is nothing to apologize for. And I know this is not for the radio, so I just want to give a nice clip, and then sort of queue it up for Alicja, if possible, to talk more about how you define crip time. Because I think you’ve done an excellent job of incorporating that concept into the framing of how we may take on, we may step in, or step away from different bodies of work, depending on where we are physically and where we also are emotionally and in our own lives, and the way that endometriosis affects our ability to maintain our basic needs, you know, food, housing, safety.
Alicja Pawluczuk
Yeah, and I think it’s tricky, you know, setting up a collective of people who have disabilities but are extremely passionate and prone to overwork themselves.
To me, it feels that there is a constant need for care, but also reminding ourselves that we have limitations and that we should take these seriously. And it’s been a year now that we are doing this, more or less, and I think we had to make some decisions as we go through to create some boundaries and also to understand how to work in a way so we don’t self exploit. And this is a very difficult balance to find, because, you know, it’s free labor, often there’s lots of emotional labor involved. You know, we had examples where people were reaching out and perhaps sharing their trauma, which is very often the case within the endometriosis community, but we also have to realize that we are not maybe the right people to deal with that.
So I guess it is more at this stage understanding about what the collective shouldn’t be doing because there’s so many things that are possible, but we really have limited time and energy. So I think we’ve been trying to be kind to each other and to ourselves, but there have been moments where obviously we were overwhelmed and I think more recently we’ve decided to take a break from social media for some time.
And Allison is the person who has been building this community on social media throughout the last year. And I cannot imagine the amount of work, free labor, in a sense, when we think about the capitalist term, which we have to because we are human beings living in the world where we have to purchase food. So the amount of hours that she’s put in it, you know, it’s a lot, right? And I think the idea of a collective itself is also something that we are exploring, trying to learn how to navigate it in an ethical way, and actually getting things done as well.
Allison Rich
Can I just define what crip time is? I have it directly here.
Alicja Pawluczuk
Yeah, sure.
Allison Rich
So we write in Endo Violence magazine, this is a quote, “to situate myself and the Endo Violence magazine outside of these narratives. I’d like to use ‘crip time’ as a critical lens. As defined by Critical Disability StudiesCollective, ‘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 body minded folk.”
Alicja Pawluczuk
It’s how do we ensure that we don’t operate on this violent cycle, or that we don’t perpetuate violence, you know? And so crip time to me is actually a way to allow ourselves to ease into the way we live our lives and not necessarily see it as a linear progression from this to that and as a success story or recovery story, but more as a dynamic functioning in the world that is actually mostly the case for lots of people, right?
Holly Hammond
Yeah, just thinking about, you know, how engaging in collective action is really empowering and important for people, but that there are barriers to being engaged in that.
So for myself, I’ve really been noticing how contingency plans are really important for me, because when I’m in pain, it’s very hard for me to look into the future and think I’ll be well enough to do something. So, you know, on a social front, it might be, ‘okay, we can buy the tickets, and then if I’m not well, we’ll give the ticket to this friend’, you know. Or we’ve got this deadline for this work project. The backup plan is that someone else in the team will do the meeting if I’m not well. I’ll start CCing people into my correspondence, in case they have to pick it up when I need to take the time out. And so thinking about people engaged in lots of different struggles for social change, you know, climate or social justice, different kinds of work that people are doing. Often it is really fast paced, reactive, ‘this is the way that you can be involved right now, we just need everybody to go and knock on doors’. Or ‘this is the tactic that we’re doing right now, that we need people to do’, and actually being able to provide a bit more of a menu for people that thre are different kinds of contributions they can make that fit with their capacity.
Or rather than putting all the emphasis on something synchronous, like we all need to be at this place at this time, how can people engage in something in an asynchronous way? So when they have capacity, they can input, but it’s not all focused on that one time when everyone has to show up.
Holding Space & Endo Grief
Allison Rich
I think that’s an excellent point. And just to bring it back to the larger Endo Violence Collective, I think if we achieve nothing else, the goal is ultimately to hold space for this diversity of stories.
What I’ve been most amazed by, is the amount of folks, from authors, from filmmakers, from artists, from activists, to just people surviving, living with endometriosis we’re finding throughout the world that are telling stories about the accommodations that we may need to feel like we have a place in society. And I think with some of the contingency plans that you discuss in your own work, that’s something that we often are exploring within the Endo Violence Collective.
So if one of us drops off, like if we go into a flare, or if you know, right now, I am escaping literal Endo Violence, where my housing was lost based on discrimination from a family member around endometriosis.
How do we adapt?
Because as much as we may want to be productive and put out another version of the magazine or have an art exhibition, our survival is key, and our humanity. And as part of that, a term that comes to mind when we’re talking about contingency plans that I’ve been exploring is this concept of ‘endometriosis grief’, or ‘endo grief’, as a response to Endo Violence that we experience.
Holly Hammond
Yeah, it’s a really powerful concept. I’m just so conscious that there’s so much loss with living chronic illness, and oftentimes that’s not visible to people as well, that we’re dealing with this grief. And anticipatory grief, the things that are coming ahead that we might not be able to access or have.
Activism
I just thought we got into talking about activism there, and I did really want to draw you out on that. Do you see your work in the Endo Violence Collective as activism?
Alicja Pawluczuk
I think before I started calling myself an artist, I would always call myself an artivist, because it was more of a term that I felt more comfortable with. And so maybe for the collective as well, I feel that it is a form of artivism, you know, uniting people.
Holly Hammond
Do you see it as activism, the work that you’re doing, producing the magazine, or, you know, the early art exhibition that you did, or creating a film. All of these feel like they are activism?
Allison Rich
This is actually a conversation that we’re having right now in the collective.
Alicja is based in an academic world and the origin of the work around Endo Violence, as much as it is part of her art, is also part of her academic work and within academia, there is an aversion, for lack of a better word, to calling ourselves activists because we want to be seen as factual, as safe information.
And that being said, I as an organizer, believe that any type of endometriosis advocacy, any discussion about endometriosis that is positive, positive in the context of correct information, not spreading misinformation, is in itself activism, and I do view the collective as using creative work as a form of activism. And the reason why I love this way of working is because I feel so often that activist movements are currently based in our geographies.
So I live in the US. Alicja is based currently in the UK, but she’s an international citizen. You are based, you know, we’re in a different day right now. I’m in Thursday, and you’re in Friday, and each of us within our countries have a lot of systems that we’re working within, the medical standard systems, the advocacy organizations and what they’re pushing for, and then the system of just navigating these systems as individuals.
And what I love about Endo Violence, and what I hope we can do as activists is connect beyond these silos within our countries. Connect beyond this debate, what is the origin of the disease?
You know, connect beyond what is the proper treatment.
Connect beyond whose stories get to get told, who gets to be visible. You know, what types of stories do we want to tell and hopefully build a movement? Because I believe that in order to build a movement, we must recognize that gendered medicine is, of course, political.
We’re having this conversation while I’m in deep, deep, deep endo grief around the current election in the US. And I live in a state where the majority did want to ban abortion care, where the majority did want to vote for Donald Trump as our president, knowing that it’s going to lead to increased policing and the determination of our ability to access health in a way that ultimately will perpetuate vast gendered violence.
So I think that endometriosis needs more spaces for activism and what concerns me the most is so often the people leading these activist movements are doctors, medical doctors, and as much as medical doctors are absolutely our allies, they may not have the skills or capacity or lived experiences to be the sole voices leading the movement building for endometriosis activism to demand that we deserve a livable quality of life, and doctors themselves are working within systems that make it really hard for them to often be activists or to determine what they think may be best for supporting people with endometriosis.
Alicja Pawluczuk
Yeah, and I think one of the things that you also might read in the book one day is this idea that Endo Violence is supposed to be used as this critical lens, you know, but its foundations are grounded in transformative justice. So it isn’t about creating more divisions. Because I feel that there’s going to be more divisions. There are divisions.
There is the influencers culture, which, fair enough, it is what it is, and it’s great, people deserve to get paid for the work. But I think Endo Violence in itself, I see it as a way to see those things, to recognize them for what they are, to potentially make them visible, but actually working in a way that isn’t creating more divisions.
But at the same time, I recognize there is a need for self defense. So how do you defend yourself within that system? How do you organize without perpetuating more violence? And so that’s just the concept. In reality, things might look very different.
Allison Rich
Is it all right if I just give some really brief examples of endometriosis, Endo Violence and activism within the collective?
I’m just going to use first names to talk about folks that are involved in the collective just to protect folks. So one of our leaders within the collective is someone who I consider to be an activist named Angie. And Angie is a phenomenal writer, and she also, I believe, incorporates activism into the way that she practices mental health care. She’s really creating a model for how people with endometriosis need and deserve to have access to specialized mental health care, not because we are hysterical, but because of the violence that we experience in just existing with endometriosis.
Another person that comes to mind that’s connected to the collective is someone named Alex. She is also a researcher, and she put on an amazing conference called The Endometriosis Revolution. And in that way, she really brought activism around endometriosis through creative practices into academia, and also made sure that it was a free event that was accessible to many people. And also thought about activism in terms of the way that she planned the conference and the accommodations that folks would need, whether it’s a low inflammatory food at the event.
And then we also have another collective member named Rachel, who really archives stories of endometriosis, not only activism and visibility, where each piece that she makes represents an individual story, but also curating those stories into exhibitions.
I’m really grateful I just got a copy of this book called ‘Others Like Me‘, from an amazing author named Nicole Louie, who I think is really doing an amazing job of activism through writing where she’s incorporating stories about endometriosis into larger experiences of living in a world where we choose to, or may not choose to, be mothers.
Alicja Pawluczuk
Thank you, Allison. I think that’s so important because we talk about the collective and I’m just like talking about myself. So thank you so much for bringing that in. I think that’s very important to mention these stories.
Holly Hammond
Hearing you talk about these different forms of activism and also the role of doctors and other people, I’m really struck that social change requires an ecosystem where people are playing different roles, and on the Commons Library, one of our most popular resources is from Bill Moyer, who wrote about the four roles of activists and the eight stages of social movements. And the four roles are citizen, reformer, rebel and change agent. So, you know, often we’ll hear about the reformers.
In Australia, I think we’ve got a kind of a peak body around endometriosis, and they’re, you know, doing the submissions, and they’re in the meetings with politicians, that kind of thing. But the rebel role is more of a disruptive thing, which is really standing up and saying, ‘No, that’s not acceptable. That’s not okay’, and are there to put the issue on the agenda really strongly for people. And the change agent is about building a big group of people. You know, it’s about organizing and bringing people together to take action, but it’s also about visioning and paradigm shift.
So I think in liberation movements, it’s so crucial to have an analysis of what the problem is and to hold out a picture of how things could be different and I really think your Endo Violence work’s been really powerful around that, both really amplifying people’s lived experience and showing the leadership of people with the lived experience of living with endometriosis, but also using creativity to put forward different ideas that contribute to that change.
Allison Rich
I love that.
Thank you so much for framing the work that we’re doing in that way, and what comes to mind also, and I’m don’t have the exact term, because I am experiencing a little bit of endo fatigue at the hour, is just the work around the spectrum of change and how we really work with the spectrum of the different roles within social change movements to create systematic changes.
So there’s this idea that on one end you have laggards, and on the other end you have innovators, and then if you can just move every portion of folks in between these two spectrums just over one notch, that we put the laggards eventually into the minority, and we can slowly move folks that are innovators into the majority and I really hope that this is work that we’re doing with the Endo Violence Collective.
So often, the innovative work around endometriosis requires a certain level of expertise to understand, and it can be really isolating and I think isolating to larger communities that may not have access to scientific literacy or educational literacy in the way that medical systems define it…
…and so I really hope that what we’re doing is acting as innovators that are slowly using creative practices to bring visibility, to slowly turn laggards into the minority so that we can create a majority that understand that endometriosis is not just a social justice issue for people that are living with it, or for people who love people with endometriosis, or for people who treat people living with endometriosis.
But it really, truly is a societal issue that affects not only our quality of lives, but the quality of lives across the spectrum of society, and that we aren’t going to be able to build a movement where we shift the standard of care without having really strong alliances and coalitions across issue areas.
Alicja Pawluczuk
I just wanted to say that to me, hearing your words Holly about Endo Violence, and actually doing the analysis of Endo Violence, it kind of feels surreal and whenever we have these conversations, or whenever someone approaches us and say, ‘Oh, I read Endo Violence’, it just blows my mind.
You know, because it feels like you are doing something, perhaps you are connected to so many people, but you’re also doing it a little bit in isolation and you know, with this type of work, I also realized that I spent most of my life in community education and non formal education prior to joining academia, and I’ve always seen this huge divide between the real knowledge and the less acknowledged experiences or the knowledge from the communities.
So to actually hear the concept and the understanding and that as a collective we are floating around in different spaces, it really means a lot and ideally, yes, I really hope we are going to move forward in some way, and we will see how it goes. Because I also see the whole thing as an experiment.
Within the crip time, for instance, it doesn’t have a specific goal or agenda or something that we need to achieve to feel successful. You know, it’s not about that. It really is a process, and it might be messy, unpredictable, very complex, and we might be very busy tomorrow, but the day after tomorrow, we’ll just rest.
So I also see the richness in that way of working and actually learning about ourselves as well while doing that. So I just wanted to say thank you for just taking the time to think about Endo Violence because this is incredible. This is the value of the work. This is essentially, us having that conversation, that to me is like, wow, you know, this is change, you know? So thank you.
Holly Hammond
I’m just really conscious so often we are doing things and we can’t see clearly what the impact of that work is or how it’s affecting the people who are coming across it. So yeah, I’m really happy to be someone who’s come across your work and can kind of reflect back to you, this makes a difference. This is important.
Alicja Pawluczuk
So the book needs to be written, now.
Holly Hammond
Yes. So what’s the timeline for your book?
Allison Rich
Holly, while we’re having this conversation, I just want to say, first of all, you are now part of the Endo Violence Collective, the work that you are doing to bring visibility to it. Thank you so much.
We are not defining collective in the formal sense, where there’s a set group, and we’re the only collective members. It really is about movement building and so I just want to take a moment and just shine the light back on you, and say, first of all, thank you so much for having us here today. But also, I’d love to ask you what Endo Violence means to you.
Holly Hammond
Wow, I feel like I’m really in it at the moment, because this year I had some beautiful months without pain, then my pain has come back since August, and I’ve been in that process of trying to get more information about what’s going on, having the ultrasound, speaking to this specialist.
This week, I spoke to a pain specialist who was incredibly disempowering and, you know, the thing that you’re saying around expertise, I feel like that’s something I really have to keep reminding myself that, you know, sometimes we’re in these rooms with health professionals who know less about endometriosis than we do, and certainly they’re not greater experts about our own individual experience. So trying to kind of put that strength behind me when I go into those spaces, and that is the value of the collective. There are all these other people also going through these processes.
I think from this conversation, I’m thinking about the Endo Violence I’ve experienced from outside, in terms of, you know, stigma, medical neglect, you know the actual pain of living with endometriosis and the pain of surgery and recovery from surgery.
But I’m also really thinking about that internalized Endo Violence and I think this is really making me think that there’s enough going on without me pouring more on myself. You know, I think earlier on, you were talking about capitalism and productivity. Capitalism is hard enough to deal with, let alone having endometriosis in capitalism. And the double combo and the way that how we approach it, and how we live our lives, is all part of the change that we’re trying to create.
So I definitely feel like endometriosis has also taught me things, and I’ve grown from the experience of having it in terms of connecting more to my body and the signals that my body sends me, trusting my own thinking and being an advocate for myself in different spaces.
Allison Rich
I think we were just going to discuss Alicja’s book and I’d love to just mention really quickly that another system that I’m often thinking about Endo Violence in is also within environmental justice movements. And I would like to take this space to say that these are movements that should be interconnected, that the way that we are treating the Earth, the nature of climate change, the nature of environmental health exposures – which we know environmental health exposures actually can be a contributor to causing endometriosis – are all systems that we can collectively explore when we’re thinking about larger change and a more livable future with less Endo Violence.
Alicja Pawluczuk
And that’s going to hopefully be in the book with the ecological, environmental violence, and some evidence around how that has an impact on those suffering from endometriosis as well. But yeah, you’re right. All of these things are interconnected. And it’s not to say that there’s going to be a list of ‘these are the different types of violence’. Let’s just like, create this very happy list. But it’s recognizing these connections as well. And I’m sure there’s going to be more and more and more, but this is just the beginning, I hope. Or maybe not. Maybe it’s about finding more connections, but it’s about hopefully erasing some of these structural forms of injustice.
Holly Hammond
And so the book, anything that you wanted to say on that Alicja before I wrap up?
Alicja Pawluczuk
What should I say?
Allison Rich
Well, so Alicja is an amazing researcher, and she’s currently doing her research within University of Leeds. I believe she is a Fellow within the Include Network. And as part of that work, she really has been exploring so many different concepts around Endo Violence, and she recently hosted a residency where she brought artists from around the world together and really gave us an opportunity, artists, to explore the different ways that digital equity and inclusion affect us in our daily lives and in our work, and how we can respond to it. And I’m so grateful that after that, she took time to sit down and to really put into words so much of her learning around Endo Violence.
So I’m really grateful that she allowed the collective to read the book and she invited us to be contributors within it, which is not traditional within an academic structure. But what the book does so well is it literally gives word and meaning to so many of the different experiences that we have. And I think Alicja does an amazing job of incorporating her own experiences of living with endometriosis into why there is a need to research Endo Violence and to research it not only in digital spaces, but across these multiple intersecting areas.
Alicja Pawluczuk
Thank you so much for describing it so well. But I guess the purpose of Endo Violence as a publication is to have a starting point where we get to organize our thinking and activism around it and actually also create some solid theoretical structure to say, hey, there is evidence that there’s different types of violence within this extremely violent system, and it really depends on where you are in the privilege, kind of oppression, system.
It really is affected by the intersectional factors and where you are in the world and looking at all these different aspects, I feel like it allows us to connect these things together.
And also, like I said before, to create this lens or notion where we are recognizing that one’s position in the world is affected by Endo Violence, which is an interconnected system of oppression. And it’s about maybe creating this understanding, and to begin with, having some literature around it, while adding members of the collective into the discussion as well, and kind of adding my own voice to it as well. And in line with critical scholars, I’m trying to make this book sort of accessible and make sure that feelings are also a part of writing.
So I wouldn’t like this to be a cold publication that is supposed to deliver a certain type of message, but I do want this to be something in between. So it’s not going to be a typical academic publication and I guess maybe that’s the value of it, as well, being something in between and being this starting point. And I’m very privileged to have this collective authorship and having all these different people jumping in and adding few things.
It’s a bit of an experiment of how to, you know, create something in a collective manner without exploiting people. And so this was something that my professor, Helen Ford, that I work with, she says, ‘Why don’t you just go and use the approach of data feminism, where you are actually inviting people to co-edit parts of it?’ And so I went into that direction, but it’s probably not as amazing as data feminism, because they took full accountability of their references and stuff. But yeah, that’s the book, and the book will be out soon, definitely by the end of this year.
Holly Hammond
Sounds great, and it’s great to hear the creative way that you’ve approached it.
Definitely at the Commons, we’re really interested in connecting academia with activism. They can be so siloed and apart. But even the way that you are writing this book and co authoring this book, it’s a great way to shake things up.
So thank you so much, Alicja and Allison from the Endo Violence Collective, it’s been really affirming and soul enriching to talk with you both.
Alicja Pawluczuk
Thank you so much for having us.
Allison Rich
Thank you so much for having us. We’re so grateful to be here. And you can find more resources around the Endo Violence Collective at endoviolence.com, or find our Instagram account at @endo.violence.collective.
We invite you to be part of this movement. You don’t need to have endometriosis. You don’t even need to know what it is, but we invite you to come and learn and organize with us.
Thank you so much.
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