This month we talk with Anonymous about their piece, "On Care and Control." Read the full piece: https://jps.library.utoronto.ca/index.php/cjtmhd/article/view/40814
We talk about interdependency, care as control, care as mutual, and the desire to be mediocre and celebrate mediocracy! Have a listen/watch!
Check out 10 Principles of Disability Justice by Sins Invalid: https://static1.squarespace.com/static/5bed3674f8370ad8c02efd9a/t/5f1f0783916d8a179c46126d/1595869064521/10_Principles_of_DJ-2ndEd.pdf
This month we talk with Anonymous about their piece, "On Care and Control." Read the full piece: https://jps.library.utoronto.ca/index.php/cjtmhd/article/view/40814
We talk about interdependency, care as control, care as mutual, and the desire to be mediocre and celebrate mediocracy! Have a listen/watch!
Check out 10 Principles of Disability Justice by Sins Invalid: https://static1.squarespace.com/static/5bed3674f8370ad8c02efd9a/t/5f1f0783916d8a179c46126d/1595869064521/10_Principles_of_DJ-2ndEd.pdf
Welcome to the Mad and Crip Theology podcast we are so happy that you're here with us today and we are excited to be speaking with one of our contributors to the Spring 2023 issue of the journal so welcome! Thanks, it's so good to be here I am really happy to be on this podcast I've admired it for a while and so uh proud to be published in the journal I am speaking anonymously due to my family situation I talk a lot about my family in this piece and the nature of the situation requires me to remain anonymous but really happy to be here and talk more about the piece I wrote thanks Amy thanks Miriam!
Yeah we're so glad you were so excited when we saw your piece come in I think I did a bit of a happy dance maybe when I saw come in um and um we're just so grateful that you took some time out of your day to come and talk to us today. Thanks. We wondered if you might begin by telling our listeners about about the peace in case they haven't read it yet or they read it a long time ago. Yeah totally so I write as a Mad lesbian Christian and I wrote this piece on Care and Control um about the relationship between so many Mad and disabled folks who need care um and how a lot of the people who provide care to Mad and disabled folks exert a lot of control over the way in which that care is provided and I talk a lot about how a lot of things that can seem caring in addition to kind of interpersonal care which is what most of the piece is about but I also talk about other things how other things we call care are really control things like being in the care of the police that's not care that's control things like being the foster care system again that's not care that's control our Health Care system for so many of us that's not care that's control and so when we start thinking about that in systemic ways we can also apply it to interpersonal relationships. A big part of the piece I talk about my relationship with my mom who's an adult child of alcoholics and the high need that she has for control and that she had in control for my life growing up how she controlled pretty much every facet everything I did she was our you know Girl Scout Troop leader she was our youth group leader she homeschooled me all these different elements of my lives I recently learned my mom shared with one of my siblings at her favorite time in our lives as kids was the time when we were homeschooled and before we interacted with the outside world which aligns up exactly with what I'm talking about in this piece is high need for control that she had and talk about how my mom when my mom was a kid a child of alcoholics the oldest child care was control for her she had to be in control of her surroundings in order to keep her and her siblings safe and she has chosen to never grow out of that reality even when it no longer became true and so I talk about how my relationship with my mom especially as an adolescent and young adult um was very contentious but was especially contentious when I was doing better quote more stable so the more kind of help or care I needed the more kind my mom was to me the more patient the more generous the more willing she was to visit me and spend time together whereas the more independent that I was I thought more challenging our relationship was the more contentious the more we had arguments I mean really realizing that even though she was being kind to me kind of interpersonally again when I was needed a lot of care it came with a lot of condescension kind of with this assumption that I could not live my life without her that I needed this care and should accept this care in whatever way she chose to offer it and then when I was more independent our relationship struggled because she had less control over my life and so kind of seeing how these two things tied together for a lot of Mad and disabled folks who do need a lot of care and the ways that we're really not allowed to have care on our own terms. I also talk a little in my uh kind of the blurb I wrote for the piece and the journal about how this piece felt important to me to write because so frequently caregivers for Mad of disabled people are kind of idolized as like these angels these perfect sinless beings who are doing you know suffering so much and caring for these people um and we're not allowed to critique that care because the narrative is oh you know how how could you possibly say anything bad about this person who's dedicated their life to making sure that you survive you know kind of with this implication that you're such a burden and burdens don't get to care about the people who keep them alive and so it really felt important to be uh you know critical in a healthy and fair way in this piece to say that no actually we get to talk back to our caregivers as Mad and disabled people we get to have something to say about the care that we receive and we deserve to have care on our own terms I'm kind of ending with this understanding that real real autonomous care is interdependent and that's the kind of care that I've learned from other Mad and disabled people that's how other Mad and disabled people have taught me that we keep each other alive we each need things from each other we all know each other we all have gifts that we can offer each other in this community and that kind of interdependence is what I say is the Gospel message here is the good news for me the good news that there is another kind of care that we can offer each other that's not condescending that's not controlling and that is interdependent care.
Thanks so much for that we really appreciate your summary there and I think um we'll come back to this idea of interdependence in a little bit because that might be a new word for some of our listeners so we'll come back to that um we wanted to ask you a question about this idea about coming out as Mad so when did you first come out as Mad to yourself and to your friends and community? So I really came out um to myself at least when I was a young adult I've been hospitalized twice for being a Mad person trying to make it in this world and the second time that I was hospitalized I lost my job and I was in the hospital and was away from work and I had just started work I didn't have any sick time built up it was a new job no PTO and I you know come out of the hospital and what do you need in a crisis you need stability and resources and instead I came out of the hospital to have no job and no you know income but also no stability and I did realize in that moment um that a real sense of solidarity I think um and it does it does remind me of the quote and Mariame Kaba talks about this let this radicalize you and not lead you to despair and it was this real moment for me of kind of being radicalized and saying like wow I'm in solidarity with so many other Mad and disabled people who've been punished for existing as ourselves in the world who have been lost their jobs who have been denied resources who've been denied access I'm actually coming into this community here there are so many people like me who have this experience so that's really when I got into disability theology in a big way I read Nancy Eiesland's the Disabled God was my entry point I think it is perhaps the best entry point uh disability theology at least as it exists right now um and uh so that that really kind of connected me theologically to this idea of disability in a broader disability community and she talks so beautifully and really that almost the first two thirds of that book about the disability rights movement and really kind of grounded me in a history of a community and so it came out to my myself as disabled then and since then have done a lot of work on disability theology and really only came into the language of Madness within the patterning and in some of the disability spaces that I was in and really feeling a connection to the non-medicalized way of talking about the way that my mind and body exist in the world I'm kind of in the same way that a lot of disabled folks
really encapsulated uh not only kind of the challenge
it's done in the medical model but also the gifts that I bring to the world as a mad person who has a different perspective and can understand the world in ways that sane people just cannot and so Madness for me is the language that allows me to bring my full self to not only my work but also other aspects of my personal and professional life.
Thanks for that that's such a great summary of how how you moved towards um towards accepting your Madness um so thank you so much I want to just ask as a follow-up were your friends cool with um with this sort of like change in you maybe seeing incorporating some of the Mad Pride um into into your identity? I feel like I feel like the question I get the most is like what the hell is Mad? Like what are you talking about yeah um so I feel like when I kind of explain it to people and especially if this language of talking about kind of not just a deficit model and comparing it to kind of a social model of disability I think that's an easier access point I'm uh really dominates our at least the world that I live in and so kind of trying to tease out for people um you know connections between like stigma but also things like sanism, kind of more overarching contextualized ways that I understand myself and so I think it's kind of a a learning curve for most folks I talk to most folks I talk to in my community even in my disability community um don't know what Mad Pride is aren't familiar with the movement but once I explain it you know I really on board I would say for the most part I would say there are still some people who are like you know how could that ever be a good thing you know isn't it doesn't it suck that your mind's broken I feel like those are the people who are always going to feel that way no matter what language I use but those people uh don't stick around in my life very long.
I know the feeling. Yeah. I wondered if I could circle back to like you talk about the sense of care when you're more vulnerable, and I wonder and I'm doing some work for care now and some disability studies people challenge this idea that you have to be nice all the time to receive the care you need to survive right? And then so you would challenge that too? Yeah totally I I think a lot about um how we need more mediocre disabled people like representations of disabled people
yeah not not so many super crip people who are nice and pleasant all the time
I think maybe we lost her
Sounds good.... People like living their lives and I think that's uh the same kind of idea for us or at least express our uh are as Equitable and model care as fair or just
Yeah so you were talking about more mediocre disabled people
Yeah this idea that a lot of our disability representation is like perfect disabled people like brilliant thinkers brilliant writers incredible athletes like hilarious comedians and like most disabled people are just like pretty boring like you know have bad days and are like not always very nice and like you know piss each other off and make mistakes and like you know also have moments of being you know brilliant incredible human beings but I feel like we don't get a lot of kind of mediocre disability representation we always have to be either great you know incredible brilliant or we're cast as these you know horrible burdens on you know the world and so that's kind of where I'm coming from in this piece too is like that's also true for our caregivers you know like we only see we're only told that caregivers are perfect but like caregivers are also often mediocre right like at best and can have bad days and be mean and um really just kind of trying to be honest about like the humanity of this relationship and the you know frailty of so many of us in high stress situations and um how you know we we should be able to talk back about the kind of care that we receive yeah I wholeheartedly agree and and going for that to like what else what is sacred care look like between to mediocre people between
mediocre people and God? Like how does God care for you? Yeah I love this question the one story that I tell in my piece is about me and one of my dear friends we're both disabled I frequently say that I have learned how to survive as a disabled person only from other disabled people no one else is invested in my survival as a disabled person except for other disabled people right the world is not is not made for us to thrive and so this is one of the people from whom I've really learned to survive as a disabled person and she's blind and I'm Mad and we have shown up for each other in interdependent mutual care in a lot of ways and that's when I think of sacred care I think about things like autonomy and agency and mutuality and you know tenderness and respect and we've shown up for each other in all of those ways in sacred care and the one example of this is it was pretty early on in the pandemic and she had just gotten back from traveling and she needed to go get a covid test and I was having a day where I just felt really disconnected from reality really kind of in my own world did not want to be alone didn't really trust myself to make decisions that were good for me and so uh it was this moment of I really needed to not be alone and she could not get a covid test on her own because she couldn't navigate to the test site and so it was this day of us being together me leading her to the covid test side or accompanying her and her accompanying me and grounding me in this moment where I did not feel um myself and that to me is this understanding of interdependent mutual sacred care is this understanding that we need each other right that no caregiver doesn't also have needs no care recipient doesn't also have gifts right like we're it's just a lie to say that there are human people who don't need other human people it's just not true so recognizing the ways that we need each other and the ways that we can offer each other care and to me that's what that's what sacred care looks like is acknowledging the sacredness of our humanity which just involves me um I really love Deborah Creamer has in her work on disability theology talks about um the limits model of disability and something that I love that she says is is disability is an unsurprising part of the human condition it would be more surprising if there were not disabled people and I think about that with need and care too it would be more surprising if we didn't need care and it would be more surprising if we couldn't offer care both needing and offering care are just integral unsurprising parts of what it means to be human and so I think the sacredness really comes from recognizing that and being in two-way communication about about how we care with and for and among each other I really like this question about God caring and I think in interdependent language how we care for God um someone in a in a disability group that I'm part of as we're talking through some of these cure narratives in the Bible which is what a lot of this disability theology has been kind of forced to focus on uh that comes up so often and we're talking about this passage and someone said you know um you know all of Jesus ministry you spends so much time with these disabled people and then Nancy Eiesland's model he becomes disabled and thinking about these disabled people throughout his life in ministry teaching him how to survive also as a disabled person and I really loved that imagery about Jesus spending time with these people not only being in maybe a complicated kind of your heal relationship but then later in his life when he becomes disabled I like to think that he was thinking back to all the ways that he learned from these other disabled people he encountered in his ministry about how to make it as a disabled person himself and so I think of that as kind of a two-way relationship of God offering care God in the form of Jesus offering this again maybe complicated care if you've disabled people throughout his life and then offering him this witness and companionship and sense of solidarity when he joins the ranks of disabled folks as so many people will.
Yeah that's such a wonderful um thought to think that um God and that Jesus learns from us it's very mind-blowing to me yeah very meta okay um yeah and I hope um we could come back to some of this um some of this idea of you know the interdependence of God um even within God's self on the podcast maybe later just to ponder over um all right so we we've been we've been talking about the about interdependence so far um so where did you first hear about interdependence there was there's a quote that's in your piece uh about it so um is that where you first heard about it and can you tell us a little bit more about why it's important to you? Yeah so I said I'd heard people kind of talk about interdependence and these like kind of Lefty justic-ey circles um if not maybe as much citation as would have been appropriate um I really learned about interdependence from the writing of Mia Mingus who's a disabled um person of color who writes uh who's part of the um who's part of the Sins Invalid Collective and does a lot of transformative Justice work with the Bay Area Transformative Justice Coalition um and so her work really is at the intersection of disability and accountability and a transformative justice then and it's from her writing that I really learned about interdependence and she's who I cite in my paper and Mia Mingus has has beautiful things to say about interdependence I really recommend that you read some of her work on her blog which is called Leaving Evidence but she talks about interdependence kind of fundamentally as turning towards each other and that's one of the pieces that I that I quote in this piece turning towards each other when we turn towards each other we ultimately are turning towards ourselves in this sense that like we all need each other we are all going to face challenges in our lives that require us to care so interdependence is really this kind of queering of um what could be independence which again I just want to say it's just not true none of us are independent we all need other people we all need other beings we all need you know plant life and other forms of creation no one is independent it's just a lie um and it but it also is not codependent it's also not kind of an unhealthy um you know kind of outsourcing our own identity onto another person right it's not that sort of reliance but interdependence is really kind of this third space this queering that says we can both be your full selves and need each other and in fact that's the only way that any of us are going to make it and again it comes back to this idea that we all have something to offer and we all have something to receive and I'll say one thing about interdependence that I um a way that I've kind of shifted my thinking on interdependence over the years is I think kind of the first couple times that I was reading about interdependence or talking about it I kind of told myself this story about like oh yes and half the time we offer things and half the time we receive things and like over the course of our life it kind of nets out to zero and that's just not true like some of us will like need more care than we're able to offer some of us will offer more care than we're able to receive we also you know offer lots of other things our resources and our time and our company and our creativity right it's not always you know I don't know helping people transfer from a wheelchair or you know giving people their meds um but things it's just but it doesn't always net out to 50 50 I guess is what I'm saying and that's really been a shift for me is to understand that it doesn't have to net out to 50 50 in like one individual person's life or even you know a community's collective life but understanding that there is enough in the world interdependence wise on abundance there is enough in the world enough care enough resources enough company enough community to get us through together and so it doesn't have to be kind of a net zero on any one person so when I talk about interdependence it really is it really involves like a community it involves all of us it involves everyone so that there is enough and it's not just forcing people to give when they can't or pretending that some of us can give can give what is not possible for us to give.
Yeah for sure I might add two like in my own sort of like journey with Madness and crippness and stuff I've I've had to learn thank God for my therapist with the help of my therapist to accept care too um because I found for myself I often resisted care um I often in my life have kind of like turned inward and done most of the caring for myself so my own journey has also been like like allowing people to care for me which is probably a whole other ball of wax but um but that's been so important important to me um in my journey. Yeah totally and it's so much harder to accept care when it is like coercive or like feels bad right and like so much easier to accept care when it feels like trusting and respectable and autonomous and agential and um it just yeah makes it makes it easier and makes me feel better about accepting care for sure.
So we we wondered how this Mad and Crip interdependence might be experienced like in faith communities or academic theological institutions where you know it should be the case that that we're living into this this stuff as Christians who care for one another and as people of faith who receive and give but in my experience its been more complicated to to to to offer that model to the church and to university life and all that
so I wondered if you had any wisdom to share. Yeah I like my first thought about this question is I have a friend who likes to say like oh you know um that'll come in the new Heaven and the new Earth they're like you'll know in the new Heaven and the new Earth that's what my first response is like faith communities will practice interdependent to the new Heaven and the new Earth it just feels so far away
from like how faith communities operate like I'm I'm just so with you Miriam it just feels like like not in this realm is that gonna happen um but I do and I I have this story that I tell about I went this is years ago it really is when I like first was coming out to myself as disabled which is probably why I remember it so clearly but I went to the conference um at a church near me about like disability ministry or something and I use that phrase specifically disability ministry and I want to I want to come back to this there's a conference about disability ministry and they were talking about how to be inclusive and accessible and I'm welcoming to people with mental health issues or Madness I'm sure they use the language of mental health issues um anyway and at the end of this kind of like a two-day conference that's what they've talked about the whole time at the end of this conference um you know the presenter's like does anybody have any questions and someone raises their hand and says well if we're accessible to disabled people and people with mental health issues aren't they going to come here? It was just like this shocking moment for me of like you like you went through all of this and you are so scared of like disabled and Mad people being in your space like you just cannot even square with the fact that like you're doing something that's gonna like increase the incorporation and the welcome of your of your space and so when I think about like how can faith communities be interdependent one of those times where I'm like it's in our tradition you guys it's like it is deeply in our Christian tradition to like practice interdependent care to show up for each other to be here in love like we have all the theological resources we need like the importance of bodies right like communion Eucharist like bodies like the most important thing especially coming from a Catholic tradition it's like all about the freaking body man but when it actually like comes into our church we suddenly like totally you know lose our shit about how to care for people with different kinds of bodies so I think like I think we have all the resources of space communities yeah right right it's like we have all the theological resources we need as faith communities um we just need to tap in to them. So It hink you know um faith communities can be incredible hubs of things like Mutual Aid right it's like an incredible a lot of faith communities have a concentrated amount of resources with many different kinds resources like space resources like money resources like printers or vans or um you know gender neutral bathrooms you know whatever it is like churches have resources resources of people organized people right and organize money is what is what makes so much of our change in the world and so I think that churches have a lot of capacity to be hubs for interdependent care um I just think so frequently instead of that the church kind of defaults to either kind of outright exclusion like but experienced at that conference or these really kind of condescension and control models of like go back to this phrase of disability ministry I can be very wary of people who talk about doing disability ministry as opposed to things like disability theology or disability inclusion or disability solidarity because so often what they mean by ministry is tied up in this condescension in this kind of infantilization in this like you know again putting disabled people as either the angels or the burdens right not allowing for this kind of mediocrity that is like weirdly our goal um and so I think like churches have there's a lot of potential in terms of kind of the organization of churches to be real hubs for interdependence but I think like we can you know live into that call either on this side of heaven or on the other side you know and I like I'm really pulling for this side. Me too!
This has been delightful we wondered if we didn't cover we probably didn't cover everything but other things you want to chat about some more or questions for us?
A couple things that I that I always want to do is I want to be really clear about kind of citing my sources and how I got to my politics and I want to just explicitly cite the Disability Justice movement as a a group and a movement that's deeply formed me as a white cisgender lesbian disabled and Mad person um the Disability Justice movement of the uh started by mad and disabled queer and trans people of color there is an incredible um article called the Disability Justice Primer which is released by Sins invalid on the 10 Principles of Disability Justice by Sins Invalid I really encourage you to um to look both of those up and uh that's and that's really deeply formed kind of my own disability politics and this idea that um our disability politics are informed by every aspect of our identity and this idea of the leadership of the most marginalized um is really important also a big part of the Disability Justice movement so I just want to be aware that a lot of kind of disability theology disability rights work has been dominated by white disabled people with a lot of access to resources people like me and I really want to be clear about I got to the politics that I have and the kind of perspectives on disability that I do explicitly from the leadership and education of black and brown queer and trans disabled folks.
Yeah that's really helpful thanks so much for for talking about that um we always want to try to get get good resources into people's hands um on this podcast um and I may add too that like uh Miriam and I I think Miriam still thinks this is true Miriam you please correct me if you don't still think this is true but we often talk about how disability theology really lags behind uh disability like critical disability studies Disability Justice yada yada we're so behind like we need to catch up we need to we're like 20 years behind I don't know Miriam if you think that's correct I think Mad study like the Mad well mad theology even exists I don't know you know this idea of like uh the Bible and mental health these books are just coming out now like so Mad so in my opinion um like mental health and and Christian theology stuff is really behind probably even more behind than just than disability theology so like yeah like we need to catch up uh we need to kind of catch up in our own crip way and crip time but um I hope that like having conversations like this and pointing people to good resources will help facilitate some of that um catching up and also um interrogation of some of the shitty very shitty disability theologies or mental health theologies that exist um because like yeah oh my God there's some really bad ones um very sort of you know like paternalistic condescending um you know I was reading a for my I'm still working on my dissertation I am I'm gonna get there people I promise but I was doing a um in one of my chapters I was reading biblical commentaries on the story of The Garasene demoniac from Mark chapter 5. and so circling around the story for a very long time because uh the Garasene Demoniac is a person in the Bible who's self-injures and my um my dissertation is on self-injury and so actually one of the commentators who I read uh called the Geresene demoniac disgusting and it's like are we really is this really it can't be I I was like I like almost like through the book across the room I just couldn't believe that we're still talking this way like we're so anyways I'll get off my soapbox now that we're behind um but yeah it bothers me that we're so behind. Yeah totally.
Yeah well thank you so much and dear Anonymous person um and and it's been great and and I think you're work and my work I use Mia Mingus a lot so I love her yeah um and Amy's work all contributes to to bring in the learnings from the Crip and Mad communities and studies so so we're we're grateful to meet another kindred in this work another kin in this work so thank you. Well thank you both for having me it's so so good to talk in community and learn from each other and it's just been yeah delightful is the word Miriam it's been so delightful to have this conversation with you both right um we hope you contribute again to the podcast yeah oh gosh yeah well thank you both for all the work that you do with the journal and the podcast it's so exciting I'm totally with you Amy about the lag behind and even to have a podcast called the Mad and Crip Theology Podcast I mean was just like I just you know ran I ran to submit something just like even just the language use was really exciting to me and showed me that yeah these are kindred kindred spirits so I'm really really appreciate all the the ministry the ministry that you both do in the non-condescending non-patronizing sort of way really good great solidarity. Awesome!