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What are some of the biggest lessons you have learned from your work and advocacy?

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We'll explore the intersection of care work, activism, and social justice, as well as questions such as:

When do self care and community care come into conflict?

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The Digital Apothecary makes social justice salves for the digital and uses the digital to make salves for social justice. While the digital can be a place that can be transformative and imaginative, it can also be its own poison and toxin that we might need relief from. We work with the medicine of the digital with intention and care, to ensure that we are causing the least amount of harm and are transforming our corners of the world as we do it.

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I can't care for others unless I care for myself first. I used to think it was selfish when was young! But it's a bit selfish, a bit self-centred, with the knowledge that if I practice that in terms of my care I can then have the .reserves In a way that are -what's that word?sustainable, in order to then care more broadly outside of myself.

PIDGEON PAGONIS

In addition to acknowledging the land that the lab occupies, we work to make sure our research supports the descendents of those whose enslaved labor made this space possible. We acknowledge the labor of enslaved Africans and their descendents, Black Evanstonians and Chicagoans like the "founder of Chicago" Jean Baptiste Pointe du Sable, who have enriched this region with cultural and economic contributions that can never be truly quantified.

My name is Bailey Flynn and I am one of the graduate student members of the Digital Apothecary Lab. I'm a white woman with light brown hair, and I'm wearing a red sweater and red lipstick today.

Again thank you all for being here.

This attention to care is why we invited Leah, Akemi, and Pigeon to be our guests for the first episode. We are infusing the work of the lab with Disability, Racial, and Gender justice from the beginning and these incredible humans are possibility models for us both in their work and organizing, and how they move through the world. I'll introduce everyone briefly but you can find a more detailed bio in the chat and in the show notes of this episode.

We are recording this podcast via digital devices that travel all over Turtle Island but many of us-and our lab space-live in the traditional unceded homelands of the Council of the Three Fires: the Ojibwe, Odawa, and Potawatomi Nations. Many other tribes such as the Miami, Ho-Chunk, Menominee, Sac, and Fox also called this area home. We also recognize that land acknowledgements are not enough. Read more about our efforts to get Northwestern to pay a land tax to the council of the three fires and the lab's commitment to do the same at the link in the chat.

Hello! I'm Moya Bailey, founder of the digital apothecary lab. I am a queer Black person sporting an afro and wearing a white turtle neck with black stripes ana tourquois sweater. The Digital Apothecary makes social justice salves for the digital and uses the digital to make salves for social justice. While the digital can be a place that can be transformative and imaginative, it can also be its own poison and toxin that we might need relief from. We work with the medicine of the digital with intention and care, to ensure that we are causing the least amount of harm and are transforming our corners of the world as we do it.

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Akemi Nishida (she/her) is an Assistant Professor of Disability and Human Development with a joint appointment in Gender and Women's Studies at the University of Illinois Chicago. She uses research, education, and activism to investigate the ways in which ableism and sanism are exercised in relation to racism, sexism, and other forms of social injustices.

Leah Piepzna-SamarasinhaLakshmi (she/they) is a queer disabled nonbinary femme writer, educator, and disability/transformative justice worker of Burgher/Tamil Sri Lankan and Irish/Roma ascent. They are the 2020 recipient of the Lambda Foundation's Jeanne C0rdova Prize in Lesbian/Queer Nonfiction and the groundbreaking 2020 US Artists Disability Futures Fellowship.

Pidgeon Pagonis (they/them) is a Chicago-based intersex activist, writer, artist, and scholar. They have received numerous accolades for their intersex advocacy work, including being honored as an LGBT Champion of Change by the Obama administration in 2015.

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Since 1990, CAIRS has been professionally serving the Deaf and Hard of Hearing Community in greater Chicago. Founded by one Deaf and Hard of Hearing person and one hearing interpreter, CAIRS is one of the largest and oldest agencies serving the metropolitan Deaf and Hard of Hearing Community.

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In addition to the provIsIon of interpreter services, CAIRS engages in vital resource development, community building and extensive charitable giving activities. CAIRS is proud to serve the Deaf and Hard of Hearing Community and is grateful for this very important privilege!

It was a really hard and inaccessible gig, but it was a good gig, that's a way that care relies on systems of poverty and inequality. I know this hour is going to go by really fast but I will say that disability justice highlights the work that QTBIPOC and other people have been creating. We have ways of caring that are different than what the able body thinks of care. There's so much emphasis on care as fixing it, like somebody goes, "If you take that vitamin, you won't be disabled anymore." I want to shout out the ways I see particularly Black and Brown communities caring for each other. We don't try to fix each other, but we take care of each other I want to lift up my friend and yours, Moya, Stacy Park Milbern Who created the term, "care doula"-ing. If you're not alone giving birth in a hospital room, and you have someone with you, that's a very different experience, When you have someone with you showing you how to use a wheelchair, to deal with an autistic meltdown, it's a form of care that offers disabled skills and relationship I could go on! But I'm going to shut up now. Should I pass it to someone? Or Moya, do you want to do that?

Leah: It is very different than the abled, capitalist, white supremacist idea of care as free, hated BIPOC femme labor that's not skilled labor. I have this idea I've been playing with, this "diversity of care tactics" which means there's a million ways to care I think it's common for people to think of care as individualized, like, "Oh, I hold my father's hand," it's only in this romantic, or familial way. But it's bigger than that. It's clearing the sidewalk because there are people who use wheelchairs, who slip and fall on the sidewalk, who I think that's a community practice. I used to shovel snow for the City of Toronto for $20/hour.

Moya: All right, so let's go ahead and get into it. So my first question for everyone is, "what does care mean to you"?And let's start with Leah. What does Care mean to you, Leah?

Leah: We 11 in my notes I wrote, ''I'm the ca re bitch," I'm supposed to know! I should say l"m a light skin brown femme with purple curly hair, and I'm wearing an ox skin leather harness. I should say I have a broad definition of transformative justice, which is that it creates more safety, justice and healing by and for of survivors of violence without predominantly using the State". I have a broad definition of care as "anything that creates more support for ongoing needs of people in terms of access realities and needs." That centres disabled people, but as Sins Invalid says, everybody has needs, everyone will have more, and they will change. There's a reason for overlap between disabled and parenting communities, between disabled communities and people who do housework and caregiving all the fucking time -sorry, I curse, Northwestern.

Moya: We're okay with that! [laughs]

Moya: You're welcome to do that!

Pidgeon: So to the question of care, I'll just say one part, because throughout the conversation I'll say more. I'll start with the part about myself, right. What I've realized is, in order to take care of anyone in my life whether my communities, family, neighborhood, neighbors, friends, etc - I had to really have a heart to heart with myself and be like, "You're not okay. You're not taking care of yourself." That's a very subjective word, right, but I had to figure out what that meant for me.

I want to do this without obscuring the way that care is turned into labour specifically for lower income, working class, poor femmes and women of colour who have migrated. I want to also note that like Leah said, care involves specific skills and knowledge. Often times the cookie cutter kind of care ignores the specific needs people have. It's something we can engage and some care needs very specific skills sets, knowledge and it is a specific thing as well as a system, as Leah said. Pidgeon?

Leah: Okay, Akemi, do you want to go next?

For me to care about anything, about getting up in the morning and going on with my day, or something outside of it like the care of the intersex community, for instance, I had to really take so much time. And pay so much attention to the unique needs that I have in terms of care, in terms of caring for myself. I'm going to leave it at that for now, but I wanted to pull It to the micro-micro, I could get even more micro. And talk about the physics and chemistry of my body, but I'll leave it there. Thank you.

Akemi: Sure. I'm Akemi, a northeast Asian presenting woman with black hair and a side shave, and I am wearing a black sweater. I was born with physical disabilities and have invisible. I want to repeat what Leah said in a ten times clumsier way but here we go. I think of care as something that impacts our wellbeing and our life itself. I think of it as an intentional way we spend our time for and towards each other. How our time and energy is directed to ourselves, our bodyminds, it can be nature, any living thing, anything. I want to start care in a broad understanding because it's often understood as a physical action which overlooks the care that disabled people give in emotional, intellectual, financial and physical ways.

Leah: They way I understand ethics is how to do things in a good way without screwing people over. I think care is foundational to what we do, not just academia, but learning, activism, persformance, all of it. It might sound simple but it's the foundation to everything. I'm jumping ahead a bit in my notes, but thinking about academic spaces and as a writing teacher who's created spaces for disabled Black and Indigenous and people of colour, "Harriet's Children", and we spend an hour going over access needs. Thinking about all the carceral elements of access, such as having to fill out forms and present them as "proof", and it's tied to this racist and carceral logic, that we're "ripping people off".

Moya: Thank you so much, Pidgeon! That takes us really nicely to the next question: How does an ethic of care inform the way you approach your work? How you show up in your movements, how does that affect how you show up? Let's start with Akemi, then Leah, then Pidgeon.

Thinking about this ethics of care helps me to understand how care has been understood, at least in academia, in white, US citizens, nondisabled, cis-hetero terms. It helps me to think about how we are considering care providers are super able minded, able bodied, but in this racist economy, many care workers experience disabling conditions even though they're told. To prioritize other people's Needs before their own.

Disabled people who are often positioned as the receivers do a lot of care work! Pidgeon just pointed out that it's a lot of time, energy, and work to figure out what we need. It takes a lot of time and energy to figure out what we need, and many disabled people are doing a lot of emotional care labour to figure out how to avoid being "burdened" to care providers. A relational understanding of care helps us to understand those aspects of care to kind of, for example, it's disabled, feminist and disability communities need to understand how emotional labour. Is part of the work of care workers and care receivers. I'll stop here and pass the baton to Leah.

Akemi: Thank you so much! I am jumping in this body mind right now! I'm so excited! Okay, when I think about ethics of care, I think about Carol Giligan who formed this term to give a feminist intervention to the masculine ways of thinking about development of morals in masculine philosophy and such. And thinking about womanness, who is included in this white-centric notion of ethics of care. Reading about this helped me consider how care has been considering in white, US-citizen, hetero, non-disabled terms.

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Leah: If you want to get accommodations, you have to bring proof from a doctor. As a disabled student, I didn't get accommodations in undergraduate or graduate school, because I was told if I had disabilities on paper I'd get denied insurance (this was before Obamacare). I spent two years walking from the non-disabled parking spots, and I'd be late, and almost lost my funding. I have students come to the door and say, "am I allowed to be here or do I have to show my papers?" People were so scared! I want to say, when we make room from jump for people to identify their care needs, it has to be an ongoing process.

Going back to what Pidgeon said, it's an ongoing practice knowing what you need, and that's dangerous when we have an ongoing struggle to hide our needs. I think especially when we're non-white, we are used to sucking it up and making due with whatever we've got. The first time I was a s k e d, "W h at a re yo u r a c c es s n e e d s?" -I was I i k e, ''I'm g o o d, I don't need anything, maybe a chair." And it was disabled Black and Brown people saying, "This is my interpreter, don't get between me and h e r, " o r ''I' m g o i n g t o s i t o n a h e at i n g p a d ," it o p e n e d t h e d o o r e v e n a crack for things I didn't even know needed to be let out.

So I'd say an ethics of care is about creating safety, not just forcing people to tell a really difficult story. The Americans with Disabilities Act says you're not supposed to have to say your disabling condition, just that, "Hey I need a chair in this kind of class."

You have some protections! You don't have to talk about your colostomy bag to a total stranger! But being safe enough to say, "This doesn't work for me." It's also about consent. I have friends who use wheelchairs who may say, "I need a boost," and then someone manhandles them, and it's like, "No, I know my body, take direction." So, safety, consent, and making sure there's room to take up space. That's my care ethics, bitch!

Pidgeon: One of the communities I come from is the intersex community, shout out my people! Hey! What's good! We are some of the most traumatized people in the world.

Moya: How does an ethic of care inform the way you approach your work?

There are some I know are alive but haven't heard from in years. I saw myself as never burning out, needing care, things like that. I thought the mission of the movement would sustain me forever [laughs] because I was in my 20s! I literally, like I said, had to have a heart-to-heart with myself.

Pidgeon: Please.

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It's the number one thing for me. I can't care for others unless I care for myself first. I used to think it was selfish when I was young! But it's a bit selfish, a bit self-centred, with the knowledge that if I practice that in terms of my care. I can then have the reserves in a way that are what's that word? -sustainable, in order to then care more broadly outside of myself which again I'll talk about later in the conversation [laughing]. One more thing, no, oh yes, maybe.

'' Leah: Yeah, can I respond to it?

Pidgeon: ... [laughs] A lot of the people that came before me in the work that I do, we are um ...we are in need of care [laughs] and a lot of us end up ...well, okay, I'll speak for myself. I ended up doing something I was warned about doing, and I ended up doing it -I replaced any care for myself with doing community work/activism for my community. That informs my care practice today. Through a whole series of things, I took a step back from the whole activism community, primarily the intersex activism I was doing. I've seen so many people before me, mentors who've burned out.

Leah, something in your book popped into my head when you were speaking! You said, "no one really cares about disabled folks until they become disabled in some way," for instance if they fall and hurt themselves. The majority of people don't see that possibility, it's a binary: you're either born disabled or you're not. That hit me so hard. Last year I fell down all my stairs when it was icy out here. I was so hurt, with the pain, and I was thinking about that line. And even the other day I cut my hand, my cat did actually, and I couldn't wash my hair. It doesn't become part of my mind until it's personal, really. I hope I said it right.

The politics that inform my ethics of care are very much to do with myself, my health. What are my health needs? Sleep needs? As my grandmother used to say, "You don't have anything without your health," I want to wish and pray to God for my health. I used to pray for Power Rangers! I now understand that health is the number one thing.

Leah: Yeah, that was four years ago, that was kind of my crip bitterness, tongue in cheek, I think abled activists were forgetting about access al the time, I was like, "If I could just get you hit by a truck, maybe then you'd understand". I want to bring in the writer and activist Talila [sp?] Lewis, who says you don't have to be disabled experience ableism. When you're not identifying as disabled, you're still internalizing ableism, so you can't ask for help let alone say what you're non-disabled needs are Let alone if you become disabled or realize you're autistic at age 42! This messes with your ability to access care. Other disabled people care for each other. I should have said that! We're the low spoons people! Can you like, do something?! Yeah. I'll stop there, that's part of the care economy.

We start thinking about care, thinking, "I can't do it all" but we can do a little bit. Another part of wisdom from disability justice is that, we can't offer each other all the same kinds of care. I can't lift my friend who is a wheelchair user onto their chair, I have arthritis in my back, but I can offer $20, listen, or tell a joke. My friend and I have a practice where we say to ea c h o t h er, ''I'm at t h e g r o c er y st o re, do yo u n e e d a n y th i n g?" I h ave a ca r, 'I maybe I can get something they can't, and we pooled instacart when we 1 couldn't go to the grocery store because of Omicron. When abled people say, "I can't do that," you can't pick up a bag of oranges at the grocery store? I had this great conversation with my friend Teuki WAllaroo,

Moya: I think that's a wonderful lead into the question, how does interdependence change how we care for each other, and our understanding of what care looks like? And relatedly, I'm also thinking about examples we've seen of people being able to make interdependence work within current institutions. So we are situated in the academy, it's come up a couple times. How do you see interdependence being one of those transformative ways to interact with this institution or others? Yeah, who wants to start on that one?

Leah: Me, okay. This is a really hard question for me. l"m like, right, 11 i n t e rd e pen d en c e, I g u es s th at' s my who I e I if e? I w a n t to s a y I th i n k th i s word has taken off the past few years because of disability justice meets pandemic. I want to say, I've seen people on podcasts say "interdependence!" It's like that Mos Def song, where he says, "hip hop is not just something on the hillside that comes down and saves us" and it's like, interdependence isn't that either I want to start with the idea that my friend Kivan Negan [sp] said once, that we are [missed].

Leah: There are people who are physically disabled who don't think about mental health, like what's a 5150? I'll tell you about that! And I didn't think about starting an event on time because otherwise you'll miss your paratransit. I might not necessarily be fluent in your care language, but I can listen, learn and then teach you my own. I'll stop there

Akemi: Yes, I love that question, too! I want to build on what you and Leah said, as we get older we know our needs and care. etc., but living in this racist, xenophobic, cis-het, patriarchal society means some of us don't become disabled at old age.

My happiest moments are when someone is like, "I want to quit my job and start this artist thing," and I'm like DO IT! Do you need a logo?! That is my jam in all types of ways. I love this question because I'm happiest and most myself when I'm helping someone else. I was listening to a book this week by, I don't know her last name because my therapist told me to read it, her first name is Jeanina. She talks about the relationship between an older person and a baby, The parent and older adult will soothe the baby, and say, "I hear you, I know stuff's hard right now," they soothe them, coo them, rock them. It's not just one way, the adult soothing the baby, but the adult is being soothed as well in the symbiotic, interdependent relationships that's happening. That's to me the core of interdependence. It's acknowledging that when you're acting in an interdependent way -you're not just filling up the cup of someone else, your cup is overfilling as well -I'm getting church vibes! When you understand that, interdependence becomes the bomb; you don't have to keep giving, and giving, and giving. It's like, no, bro, when you're giving you're also receiving. Oh, and I want to say one more thing! This is my theme, Steve Jobs! Earlier, the question, what does care mean to me? Most simply, or most basically, it's two things, I'll say the first one: it's not throwing people away, period. Not giving up -actually, you can give up on certain people -but not throwing people away that are toxic to you or hurting to you. That's in the parenthesis. And also not throwing yourself away, too. Because you can throw yourself away too. Akemi, are you going to go?

Pidgeon: Hi y'all again, I love this question, it's my favourite. I'll say some things and then I'll pass it off. I'll be thinking I know stuff and then I'm like, let me go Google this [interdependence]-it's about being human, respecting our need to be human and care for each other in a symbiotic way that doesn't ignore the fact or history that we need each other! I thought it was nice for me to look that up. We need each other, we can't do it on our own. I've realized in the past few years that I'm happiest when I'm helping someone else, specifically their goals and dreams and supporting them in reaching those things.

When we translate interdependence in our everyday lives, oftentimes we think of interdependence as exchanged in equal ways that are just not possible. I found people were coming to reclaim their messiness of their interdependence and to reframe it, and rearticulate it. I think the messiness of this, and the desire to reclaim our unique dependency, a lot of my friends say, "We are all dependent in unique ways!" All of that is directing me to think about how interdependence taught me that, how we care for each other, how we try to change that is Social change work. It's activism. We often think of care as behind the closed curtain, but interdepdennce and changing the way we care for each other and thinking of the relationships we want to be in -like Pidgeon said, leaving no one behind -I think interdependence taught me that care IS social activism and it IS social change.

Bailey: Hi Y'all, this is Bailey. the first question is about access needs related to trauma. Question: could y'all discuss how to talk about access needs related to trauma? For example, one of my classes this semester is a lot about gender-based, state, and fundamentalist violence against women and queer people and be of my own mental health state and trauma history a lot of the content and conversation has been hard. I want to engage as deeply as I can with the class but it's been really challenging and I could use some examples of care requests I might be able to make of my professor.

Akemi: It's not like disability comes to us at equal age in this violent society. Even though interdependence or mutual aid became popular under COVID, it's something marginalized, racialized, disabled, communities have been dealing with for a long time. Care isn't just not possible, publicly funded care isn't just set up to meet everybody's [needs], some of us are inherently excluded from that I want to emphasize how messy it is to practice interdependence. As Leah said, so many people celebrate interdependence, but we rarely emphasize how that happens. I was in many care collectives, very structured and spontaneous care collectives. As Leah said, we have to chip in a bit to be together, but what I found out is it's so messy!

Moya: That's such a wonderful point to end this part of our conversation on! We want to leave four remaining minutes to allow people to ask questions in the Q+A. We'll read multiple questions at a time, And to the panelists, you don't have to answer them all, just whichever ones speak to you.

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I wanted to be a professor, and Moya mentioned this in the chat. I saw so many of my professors weren't doing so well and they weren't! Because in the humanities, in Women and Gender studies, they have to be our therapists, Sit on committees, be on advisory committees, and then talk about all the triggering things like violence, etc.

Leah: The person who wrote this question, what are some accommodations you can ask for? First of all, I doubt you're the only person struggling with the material. Most classes I know talking about enslavement, colonization, genocide, most people are like "Ahh, this is Really real." I wonder if there are practices in your class like, let's breathe, take a break, ground. Are there ways your professor is making space to engage differently with the material?

For lack of a better word. I'd advise, hope, and send you ways to turn off your care and attention to things that might be draining you. For instance, in Chicago, I found a news station that for one hour, once a week, she talks only about good things in Chicago! You don't find that! I had to turn off the news to find out what my voice was. I hope that you can continue to do that.

I know for me, it's a lot of access stuff around containment, taking breaks, we're doing this for 10-20 minutes and then it'll be over. I know for me, there's a lot of spritirual practices I bring in when I write about abuse and genocide. I create a circle around myself, I pray, I ask to engage with the work and soothe myself afterwards. You might not necessarily engage your professor but those things came to mind around accommodations. And I want to say it shouldn't just be on you, the indivudal, to ask for it.

I've seen a lot of professors -especially Black and Brown queer feminist professors -building that into the academic work, slowly, at 2 in the morning, whenever they can, to breathe, build in breaks, with resilience and reminders and so on. Ack! That's all I'll say because I know others may want to answer the question.

Pidgeon: I want to say, maybe if you can't do these things in class, try to limit your exposure outside of class to things that are hard or triggering. I have a friend who is a baby, not a baby, he's 7. He told his mom, Amy Goodman, the Democracy Now host, he calls her "Amy Badman" because she only shares bad news. I stopped listening to it because I'd cry in the shower. If you can limit your exposure, that can help. I wanted to add that to what Leah said, and I think sometimes care is also about turning off. It's a good thing, you want to care about everything! But in trying to do that, you end up not being able to care about almost anything sometimes because you become so burnt out.

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Pidgeon: ... An important thing for me is that if you're the caregiver, you should be getting care, too. If you're a doctor, you should be getting massages for you back pain, whatever it is, so you can come to your patients prepared to care for them. And I also think if you're a professor, it's the same thing. Okay, okay, mute!

Moya: It's okay!

Akemi: Yeah, to those of you who asked about access needs and professors, I think a lot about these things and have developed some tips for the classroom, if you want to, you can contact me directly. Or put me in touch with your professor. Reach out, I'm available.

Moya: Thank you so much everyone!

Bailey: Thanks, everyone!

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think of care as • something that impacts our • wellbeing and our life itself. I think of it as an intentional way we spend our time for and towards each other. How our time and energy is directed to ourselves, our bodyminds, it can be nature, any living thing, anything.

AKEMINISHIDA

I want to start care in a becauseunderstandingbroadit'softenunderstoodas a physical action which overlooks the care that disabled people give in physicalfinancialintellectual,emotional,andways.

' • l1�rJ DigitaleJ Apothecar