On our tenth episode of The Mad and Crip Theology Podcast, Amy and Miriam speak with Heather Morgan and Erin Raffety, two contributors to the Fall 2021 issue of The Canadian Journal of Theology, Mental Health and Disability.
Heather's article: Disability and Gregory of Nazianzus’s Oration 14: No Body Without Our Bodies offers a reading of Gregory of Nazianzus’ Oration 14: On Love of the Poor through the lens of disability theology. Though it initially served as a fundraising speech to build one of the first ever Christian hospitals, this Oration is much more than that. Amongst his plea for donors, Nazianzus calls for a new theological understanding of those with abled and disabled bodies within the life of the Church. Interleafing modern disability experiences with this early Christian text, this paper invites readers to embrace a counter-cultural model of disability and ability, and our mutually interdependent membership in the Body of Christ.
Erin's article: Listening Even Unto Rebuke. In 2020, amidst the Covid-19 pandemic and racialized violence by the police against Black citizens in the United States, a white college classmate of mine publicly apologized to a Black classmate for failing to acknowledge racism that happened nearly twenty years ago while we were students. Our Black classmate responded that it was too little too late. That incident caused me to begin to think about the witness of holy rebuke that often looks like mere condemnation but also acts as relational bid, humanizing the oppressor by calling them to accountability. As I revisited my research on disabled ministers and leaders, I started to see how the unruliness of lament in church spaces was often unable to be heard by the church, because it smacked of rebuke. However, I am convinced this is the Spirit’s wisdom and grace in translating lament: it offers oppressed peoples the opportunity to press prophetically in on oppressors and oppressors the invitation to repent as they grapple with being complicit in oppression. Of course, churches want to include disabled people when it is easy to do so. But to listen unto rebuke is vital if the Church really wants to be transformed.
All articles are available here https://jps.library.utoronto.ca/index.php/cjtmhd/issue/view/2302
Welcome to the Mad and Crip Theology Podcast, hosted by Miriam Spies and Amy Panton, which comes out of the Canadian Journal of Theology, Mental Health and Disability. We both live and work lands that have been homes and remain homes to the Mississaugas of the Credit, the Haudenosaunee, the Huron Wendat, the Neutral; and the Ojibway/Chippewa peoples and other peoples who have cared for the land.. We are grateful for the opportunity to live and work on this land and are mindful of the need to repair broken covenants. This podcast is an opportunity to model how faith communities can engage in theological and spiritual conversations around madness and cripness. If you need a full transcript you can find videos on our Youtube channel. We want to say before we begin that topics and conversations we are raising throughout our time together are often hard! They are hard for mad and crip people ourselves and hard for our families and loved ones. So, do what you need to do to take care of yourselves, your bodies, minds, and hearts. And now, here is our episode.
Welcome friends to this episode of The Mad and Crip Theology podcast. Amy and I are delighted to be here with two of our authors from our fall issue, Erin Raffety and Heather Morgan. So we look forward to the conversation today and let us know any thoughts you may have as you listen to this episode. Amy? So welcome both Heather and Erin, we're so glad that you're here with us today and uh we're just wondering if you could give a quick little introduction of yourselves--um you know, how we know you, and uh what your work is right now, um also would you be able to give us a quick visual um uh description of yourself--just like what you're wearing and um what you look like for for our listeners that'd be great. Erin I'm going to invite you to go first. Thank you. Sure thanks so much for having me. Okay I want to make sure I get all the introductory pieces. Um so I'm Erin Rafferty. This is my daughter Lucia who's with me today, um she is kind of one of my major connections to the work that I do. Um Lucia is seven years old and she has multiple disabilities and she's a really good teacher for me so um I figured I might as well have her along today. Also, we don't have child care and it's a snow day. I'm here in New Jersey and so it's like lovely but you know all sorts of things are discombobulated. Um let's see, I I know Miriam because when I was teaching at Princeton Theological Seminary in 2018 we hosted a conference on Disability and Youth Ministry and Miriam was one of the um paper prize winners for this emerging scholars um invitation that we did uh call for papers. And honestly that conference is so special to me still because all of the folks who presented papers became again like teachers to me and colleagues and so it's been a joy to continue to read your work Miriam and to follow your career. Amy, I am getting to talk with you for the first time so I'm really happy about that. Today I was saying to Heather before we started, Heather and I have never connected before but we've connected on Twitter so that's been fun. Uh and then uh Heather and I are dressed oddly similarly today so I am wearing a gray uh turtleneck and I have um shoulder like shoulder length brown hair. Um Lucia is wearing um a magenta--would you say that's magenta or pink Lucia?
She says she doesn't know--that means I don't know when she looks up because she nods yes and no. Um Lucia is wearing, I think it's a magenta shirt, and um she uh has her front teeth growing in and um we're seated in my uh living room today in New Jersey. Did I hit everything? My pronouns are she/her/hers. Yes Erin thank you so much, that was great, welcome to you and Lucia. And Heather would you mind introducing yourself? Thanks um I'm Heather Morgan, I use she/her pronouns. I am um an associate pastor at Vox Alliance Church in Barrie Ontario and I'm working on my MDiv at Emmanuel College at the University of Toronto. Um I live with hereditary undiagnosed neuromuscular conditions that mean I use a power wheelchair and I share this condition with my mom and my two young adult children, one of whom also has a power wheelchair um and my family and I are also all on the autism spectrum somewhere depending on who we are and what day it is. Um and uh my connection to this journal and indeed to Emmanuel College and doing this work uh came also through Miriam who I met at a disability conference the year after Erin did um in 2019 at Emmanuel. Um and meeting Miriam was was the first chance I had to meet somebody else with lived experience with disabilities who was doing this work um and it started the the that initial uh meeting and then the conversations that she and I continued to have uh over the coming months uh were part of what helped me to see that there was a place for me and my story in this work um and that's been really really critical for me. So um when I had a paper that I was excited about uh as a first year MDiv student, it just made sense to me to talk to Amy and Miriam about uh having it in this journal. Um as Erin said, yeah I'm dressed fairly similarly. I'm wearing a black and white sock monkey style sweater you can you can see on the sleeves--it's got the red bands and the white--um which is nice because it is -16 where I live right now uh that's celsius, um I don't know what it is in Fahrenheit, I'm sorry. Um and I have white freckly skin and short brown hair with a good number of white hairs starting to show through in that. Um I'm wearing rose gold coloured metal frame glasses and I'm sitting in a tilt and recline power wheelchair in a nice light office with white bookshelves along my left hand side.
Thank you so much Heather and I was envious of how organized all of your books the books are on your bookshelf. I will not turn my camera to show people my bookshelf because it's like an explosion pretty much. This is my husband's present to me for Christmas was new bookshelves, so they are freshly installed and freshly organized. I'm very excited about it. That is such a thoughtful gift awesome I have piles of books surrounding me here, so don't ask me to find anything on my desk. But thank you Heather and Erin for those great introductions and I feel privileged to have met and know you both, uh I know Amy does as well. I remembered we didn't do our visuals this questions Amy, so I'm also in a power wheelchair, I have headphones on and pinkish glasses with short blonde hair and a sweater with an icy mountain on it. And Amy? Yeah well I'm rocking my COVID cut still since COVID started I have not seen a hairdresser so this is like my impromptu like oh I need a haircut haircut, uh so i have curly blonde hair, I'm wearing black glasses and a striped white and purple t-shirt. And I'm sitting amongst quite a messy room today so I've uh made it so my camera only shows the clean part of the room which is possible on zoom, so thanks Miriam. So we'll jump into to our first question which is for both of you and you both talk about the importance of making space and spaces for disabled voices and how how can churches center mad and crip voices? Have you seen this being done before or currently? This is a so simple question to start us off, um Heather, I invite you to begin.
Sure I think uh making space for disabled voices in the church is hugely important and and I would add um and it's not just that it's important for those with disabilities or those who have mad and crip voices, it's for everyone, um the whole church benefits from it when our voices are present. Um in the world that I grew up in and ministered in before my mid-30s, I had very few examples of mad or crip voices in the church and honestly a lot of the ones that I did see were kind of cringe-worthy experiences of either tokenism or segregation. Um I also grew up in a church where women weren't allowed to speak so the combination of these two factors always made it difficult for me to picture myself as having a place in the church to use my gifts or to build up the body. Um for me that changed about 10 years ago. I moved churches and our senior pastor at the church I'm at now he came to the church about 14 years ago, just following a severe mental health breakdown that had also included becoming addicted to his ADHD medication um, and in what I think was a very uh vulnerable move, he chose not to keep those things from our community. Um and he you know he could have just disclosed them to the elders in his hiring practices or a hiring process or whatever but instead he chose to frequently and regularly include references to his mental health issues in his sermons um and that vulnerability in turn made space for others to see a place for themselves at the table in our church. It shaped him as a leader and helped him to see the importance of discipling those who are mad and crip the same way he would disciple anyone else in the church and it meant that I had a lot of encouragement from him when I felt the call to ordination myself. Um I think it was part of what made him willing to do things like the work that was necessary to find ways to get me and my 350 pound power wheelchair up onto our otherwise inaccessible stage in our rented space. Um and I consider myself really really uh fortunate because i now serve as one of three uh people on this pastoral team and all of us are either mad, neurodivergent or crip or some combination of the three um and I think our congregation really benefits from this as well.
Can I ask a follow-up? Um how have you,
how has that leadership been received by the congregation, by congregants? so uh vox is kind of a weird church I guess, um in that what has happened is that there's an awful lot of folks in our community now who are um who would who would say you know I have a mental health issue or I am neurodivergent um so I think it has attracted um others with disabilities to the church but the church isn't um by the same token like an exclusively disabled or disability or mental health church. Um and what i see is that those who come and stay at Vox are really drawn to the fact that it's a place where we are vulnerable and I think that our our discipleship goes deeper because of it. I think that we're able to build much deeper relationships with one another um because of it and it's it's not like it's something that's used um you know sort of to create some false formula or or um you know, I'm not sure the word for it right now but the there's no cage around it, it's just it's the natural outcoming of it is that we don't have the choice to not be vulnerable within each other and we don't have the choice for our faith to not actually touch us where life really matters, um we can't fake it until we make it because none of us are going to make it if we do that. And so instead we just have to show up and be real and and I think that God does something really amazing in that space um in fully incarnating our bodies um for the gospel.
Thank you Heather so much for sharing. And Erin--same question to you. Thanks Heather for your response. I saw a lot of symmetry between what you wrote about in your article and your personal experience in the argument that you make about this is not just about like inclusion for disabled people for disabled people's sake this is about the way in which disabled leadership transforms the church and is faithful to Jesus' call to ministry and I think the Spirit's transformative leadership so um I just really appreciated hearing that again. I I come at this slightly differently because I'm not a person who has a visible disability but you know your experience made me think about how the church that I pastored which I always felt kind of in awe of you know, that it was a church where I think about 30 of the folks that worship there were folks that identified as having disabilities and I thought that was like really novel and amazing but then I really thought about it this way--I think back on it and I was one of the pastors um and you know of course my daughter has a visible disability and she was very involved in the church. She was born right before I started the job and we were part of the church so people knew her and got to know her and got to know the entire experience of us navigating her disability. And then the pastor that I worked with--her husband um, who has since passed away sadly, had Multiple Sclerosis and was in a power wheelchair so it didn't really occur to me I mean I feel like this is where the ableism is really strong that like navigating these relational experiences in front of the church could be a gift to the church which I think it absolutely was. I feel like I often experience the flip side the frustration of just kind of like the microaggressions and the comments and you know feeling like your whole life as a pastor is on display and you want a little bit of privacy and all those pieces and so I think there's a real cost right and a challenge to this vulnerability as beautiful as it is right um but the other things that I kind of have been working on or getting at in my work like maybe you see in this commentary piece is the fact that um in order for there to be space for disabled folks to work out their calls to ministry and to lead, there also needs to be like a de-centering right of the ableism and able-bodied folks in all these positions of kind of power and leadership and that that's faithful too. And I think that's part of the movement of of justice that's not kind of like the only answer here in like Heather you mentioned tokenism, you know that plugging people into leadership positions um that's, I don't think that's really the model we get from from Jesus, but I also think that it's there's a tendency for churches that do not have a lot of folks that are comfortable being open about their experiences of disability to say, "Oh we don't have any people with disabilities" and you know of course that's not true and that's a function of ableism. And so some of my excitement in the research that I did that I mentioned in the commentary but that's kind of forming this book that i'm working on was around watching churches that kind of fell into supporting user-led groups or free spaces for disabled ministries. And I think there's this binary that we kind of have sometimes in church ministry that it's like well if it's a ministry that's run by disabled people for disabled people it's separate and then therefore it's not good right? But in the cases that we saw the you know able-bodied church or the church that didn't have a lot of expression of disability if they played host um to a ministry that was run by disabled people for disabled people so user led a free space it was kind of tremendous to watch what that what the Spirit could do through that free space kind of disrupting all of the ableist paradigms that are present in that church. But the tendency, of course, I think is for able-bodied church leaders to like try to control it or micromanage it or get in and like that's not gracious hosting um. And so these are some of the invitations that I try to offer to churches but I also feel like there's this really important work which is kind of what I was getting at my commentary about um repenting of ableism, being honest about ableism, listening to the rebukes of disabled people even if they're hard to hear, and like all of that kind of groundwork is really essential because otherwise I think there still will be this power struggle power dynamic where there really isn't a space to nurture disabled folks so that they can flourish and lead because able-bodied folks still have like a hand on things. Um this is a really long answer but there's two more things that come to mind. So one is just to say that um the other thing that I've noticed from my research that I'm working with a little bit lately and trying this out so we'll see if it works for you is that um churches and churches are primarily able-bodied, like if you think about the empirical reality of churches I don't think they can be like it means, sounds like Heather's church could could be but I think they really struggle to be mirrors for disabled folks navigating their calls to ministry and so I work with like this distinction between mirrors and accomplices and the Kingdom of God. And the accomplices is not my word, that's from autistic activist Rayma McCoy McDeed um, and I love what she says it's like rather than allyship she says accomplices because the idea is like there's something at stake for you too able-bodied person in seeking justice in the world, like you're gonna have to give up like you know and betray, right, your able body privilege all this stuff, but I love kind of that idea that there are roles for all of us and I think it's you know and and I don't mean to be so strict about it's this for you or this for that but just to notice right that I think sometimes there's been a little bit of role confusion there in the church and um that hasn't served us well when we don't live in a world in which non-disabled disabled are like parallels there is a relationship of oppression so
sorry for going on and on and on, but it was a great question. Thank you.
Well thank you so much to you both. You've given me so much to think about. Um we wanted to ask you questions about um our God images um because Miriam and I seem to come back to this a lot or maybe it's like my own obsession and I keep coming back to it a lot, um on our podcast and in our work in the journal, but uh Erin we we had this question for you. We wanted um you to think a little bit about how, you know, how does it change our God image when we realize that Jesus uh has something to learn from people with disabilities and from um people who have lived experience of mental distress, and you know we also wanted to ask you what you think about, how does it change our relationship with with others? So you know I'll say it again--how does it change our God image when we realize that Jesus has something to learn from disabled folks? Now now we're now we've got the long questions. So yeah no and I I think, so I am an anthropologist like converted to being a practical theologian so I feel like I'm always like dancing on the edge of heresy and I like need people to sort of pull me back, but I wonder if that's okay, in that one of the things that I love about being in dynamic relationship with God, with the Christian God, with Jesus, with the Spirit is like I think you know our God is a relational God and we can bring our full selves right, and all of our questions. And for me a big part of it is like our rage um and so I what I kind of hope, and I was so I was so like in awe of the reading that Moira Egan, and I talk about this in my commentary piece, like does of this Bartimaeus text -- I think that's what you're referring to Amy, where she says um that Jesus like actually hears something critical in the address that you know sound, it is a lament, it is a plea for mercy from Bartimaeus, but it's also like "Hey wake up, I'm here," and then there's this concern from her that like Kesus kind of keeps walking, like it's not an immediate turnabout and so what I was yeah trying to wrestle with is like what do we do with that? Um what do we do with a God that you know we worry fails to listen? And I think that we have to be honest about those questions before God. There have been so many times in this pandemic where I feel like I am screaming into a void um like I'm not, you know, I'm worried about the safety of of my child and I am so concerned about the way um and you are in Canada but I'm in the United States like my country is um treating disabled people in the midst of this really um life-threatening crisis and you know, I cannot be in relationship with a God who who I can't hold back those cries right? Um and I think of Jesus on the cross, you know, "My God, my God why have you forsaken me?" And so I think that this is a dynamic dialogical relationship and I think so often, and this is probably the cultural anthropologist, to me, we kind of don't delve into how the cultural circumstances of Jesus' time impinge on him as a human being and I think we see a little bit of that in this text I think we see a little bit of it in the you know text with the Canaanite woman, like I'm not saying that um you know Jesus is not God and I'm not saying that Jesus' ministry is not important here but I'm simply saying that Jesus is implicated by the cultural circumstances in which he lives, like it's a good thing that the text shows that you know something like now, it's not the same but something like ableism exists at the time right, and Jesus is like trying to figure out how to navigate this and he's also ushering in this new Kingdom, he's trying to you know usher in this new Kingdom and get people to understand what he's about and I think it's like only natural that we're asking those questions like what are you about because sometimes I'm like you know these healing texts are really really difficult for me and I I simply want us to be honest about that. So I guess the like answer to the question is I think it makes our God image more human and I hope that that's good um because I don't think it takes away from who from Jesus is God to say that Jesus is paying sustained attention to that person in front of him in a way that makes him very much in the world but not of it. That's what I feel like I get like when I really kind of follow disabled readings' of this passage. And then in terms of each other, I you know feel like there are so there's so many times and this is the listening even unto rebuke part where like we talk about welcome and hospitality and inclusion and then when someone says something critical like we tell them well not that, and so it's not really hospitality and welcome right? It's to a point and it still kind of actually preserves the status quo and so like the radical fellowship that I'm looking for is the kind you know, and I need Jesus to do this, where you know someone can come at me with something and say this is really problematic or this isn't working for me or I'm really hurt by this, right, they say that that to the church and instead of the church saying, "Yeah, well actually you know," defending themselves the church says, "You know what um we're gonna come alongside you in that pain because that's not okay and we're gonna say we're sorry because we know that we're probably participating in that pain and we're gonna we're gonna shut up you know so we can hear a little bit more about what's going on." And so I think it like I just think that sometimes you know those deep emotional affronts like feel like the end of conversation when they're just the very beginning and we're we're not going right deep with each other in Christian community and fellowship and intimacy. I totally envy what Heather was talking about in terms of like we have to be ourselves, I'm like yes, that's it!
Thank you so much Erin.
Miriam, do you want to ask the next one?
I love that, I love that um what you used about sustained attention to people, like how how can we encourage people to have sustained attention with each other that goes beyond uh fake "how are you today?" or "how's the weather" to gain that intimacy and then to learn about what what else we can do to be Church, so thank you Erin.
And now we'll turn to Heather to talk about your amazing piece for a bit and so a few a couple questions for you as well.
Why was Gregory's story important for you to dig into and how did it feel for you unearthing this document and sharing it with the journal for the first time?
So I I'm interested that Erin is a cultural anthropologist. I did my BA in history um and so I also have always had a fascination uh with the lives of particularly like the regular average everyday person who lived a long time ago, so coming into my first church history course with this interest in disability theology I was particularly interested in asking how the early church was responding to those with disabilities. Um and you know there wasn't a lot obviously in my early church history class um but when it came time to do my final paper for this class I knew I wanted to try to find something that would connect um with disability if possible and one of my mentors actually suggested uh oration 14. I would never have found it by myself. I am very grateful for that um, and I think you know we have this this tendency to think about people in history as being less advanced theologically or less advanced um socially in terms of their ideas or having um i don't know like a simpler idea of of how to do life but for me reading oration 14 just blew all of those out of the water when it came to disability theology. Um I read it for the first time and as I was doing that like the words just jumped off the page of me because it felt so profound. Um as i was reading this this early church father who's raising money to build one of the first Christian hospitals ever and he talks about those with disabilities not as charity cases but as ministers of the gospel who are critical for the spiritual health and eternal salvation of their community-- like that just to me that I I sat with that for so long, with so much excitement because to find that in a in a text on disability theology at all is still very rare to find it on a text from the end of the fourth century is is just mind-blowing to me. Um the the charity model that we've created in the West um and used in the Western Church for centuries it created all of this separation and this otherness um these power dynamics of donor and recipients. Um and Gregory Nazianzus is here saying like um in in the context of his fundraising that he still thinks is important, it's the rich and able body whose spiritual health is in desperate need of the ministry of the lepers around them um,
and yet this this piece that to me like it's so obvious in the text um I as a first year MDiv student assumed well like everybody's already talking about, this this isn't anything new, and I went and did my research and I found I was able to actually find well everything at least in the Toronto School of Theology's, um in the U of T's library system on this passage because there's only like 15 papers or chapters on this passage that I could find anywhere um and and so I was able to read all of them and then I got really surprised because um it seemed like there were no other conversations going about going on about this in the literature already. Um so for me at that point um it became this this very deep excitement to be able to uh so early in my academic work find something that was new and that hadn't been talked about um that was so potentially transformative for the way that we think about disability theology in the church.
Excellent thanks Heather. It was such a joy to receive your paper and be able to publish your first of many articles I think. Um when you were talking about people with disabilities being ministers, he saw that I was reminded of uh interview we heard last week after Desmond Tutu's death, with Michael Lapslee, I'm pronouncing that incorrectly,
but he was he was Michael, Fr Michael in South Africa who received a letter bomb during the time of apartheid and he his both his hands were brought were taken off by that explosion and he went to his bishop at that time and his bishop said, "I have no use for you now that you're disabled." And he, I forgot how but he ended up going to Archbishop Tutu and he was welcomed there because Archbishop Tutu said that I have this blind pastor, I have this and that and that and you are needed in the service of God so yeah your history reminded me of people doing that today so that's great Heather.
Yeah let me throw it to Amy.
Thank you so much Heather for that. Um we, this is my favourite part of the podcast where we get to ask you guys to talk to each other about each other's work. Um and when Miriam and I were pairing people up for our spring podcast we were so excited to, uh we were like, oh like, "We can't wait to hear them talk together on the podcast!" So um I wonder Erin would you like to start us off um and share any thoughts you had about Heather's paper and/or any questions you might have for her? Sure um Heather I'm grateful that you pointed to our kind of, I don't know what you call it, like mutual backing into practical theology because when I read history I like feel a little bit out of my depth, you know. It's also new to me um, I just like, I deal with the living people so I but I was I was you know like I think you you capture so sincerely like you said like I don't I don't know if this is the right term, but kind of like the really progressive theology here and the, really I love anything that's kind of like radical and disruptive and I feel like it is in the sense that um you know the lines that stuck out to me when you talked about how the leper becomes a teacher and a leader in this way. And I think Miriam the you know story that you just alluded to um, I think there are these moments right where history can enlarge our theological imagination like you know we we kind of go back to something that's unfamiliar to us, like we're not you know steeped in a time where there's lots of people living with leprosy, that's not what we're thinking about and so then this becomes like a kind of dramatic example of um this in my mind is something like this critical edge right of charity, because I think that I love that part, like I'm just going to be thinking about this for a long time, the the way that he brings up you know you all are living you all have a spiritual problem um and so there's that critical edge, so I guess that's the thing I wanted to hear you talk more about is um maybe what you yeah just let you talk about what you do with this because I guess I I always kind of have in my mind this it's not oppositional but maybe it's um maybe contentious relationship between charity and justice, like I'm someone who is you know much more comfortable with like and that's what I'm writing on is these kind of movements toward you know the disability justice movement, right? I think this is just such a important um movement for our time so even like seeing words like compassion in your paper, I'm like I don't know I don't know but then you know, I was really convinced as I read but I was just wanting I was just curious to hear you talk more about kind of maybe the relationship between something like charity and something like justice or just this critical edge of charity, or whether you think this has something to offer to how we do, I don't know like, should we be reclaiming charity today? These are the questions I came up with. I think that's really interesting because uh there's sort of the flip of the questions that I came up with for you um because you know you talk about that subversive critical edge, um and uh I was thinking about you know the the ways in which um the the difference between caregivers and able-bodied ministers and able-bodied theologians who have been talking about disability theology and disability work, um and those who are have lived experienced themselves and what where the critical edges are in that uh nuance so I think that this is a clearly a topic ripe for a conversation. Um I think I think it the thing, I'm sorry I sometimes stutter a little bit when I don't have it pre-prepared. Um for me there is definitely that sense of um discomfort and disquiet when it comes to charity uh because I think what we have created with charity is this very binaristic power driven um reality and I think I'm I'm getting to the point where I think that binaries might might maybe be a result of the fall, this whole idea of of being able to separate something into binaries of us and them in and of itself feels like it may have some inherent level of sinfulness to it, I think. That's, I've got a lot of work to do on that but but just even at this point for me it's it's a really challenging uh place when we set up these power dynamics um but at the same time what what Gregory is talking about when he's talking about charity seems to be subtly different than what I experience as charity in our world today um because he's talking about like a mutual interdependence that says um my body has needs and your body has needs, and my mind, and my spirit, and my emotions have needs, and so do yours, and if we if we together join into this dance of God uh meeting the needs of all of us together, what would that look like? Well I'm still going to need help opening the door, I'm still going to need someone to build me a way to get up onto the stage, there's no way around that but but it stops being charity in this Western sense and moves to this like mutual interdependence that Gregory calls charity. Um I think I think as it does that it changes it changes the edge of it and it moves it from a place of um power uh dynamics that are really negative to to a place of opportunity and possibility, I think.
Yeah I really like that, and I definitely want, I feel like you didn't really get to ask me questions, but I just I wonder if, it just sounds like we're cl we're closer in terms of what we're working on, um and that some of like you said, some of these terms and these binaries are getting in the way. And I think that, you know, Jesus is a binary slayer because there's like this sense you know, I don't know, people talk about how like every time you think you know, Jesus draws a line, you know and you're seeing some on the other side of the line like he steps to the other side line, like this I I really feel like I have such a problem with Jesus because he's so slippery, he's like, trying to pin him down like, "This is who Jesus is," I probably shouldn't endeavour to do that, um but I think that there's something, I mean I really liked I really liked the depiction, I think it's really important to say like the depiction of charity that Gregory has is is is not what we have today and here are the problems right, with what we have today, um and then maybe here are the invitations with um what he calls us to. And I think a lot of this like I kind of go back to imagination because I think a lot of it is like without what you shared about your church and the leadership there, it's like I don't think people can imagine what we're talking about and when you even talk about interdependence it's like this is these are like fully fleshed out relationships that are not um about like calculus and you know, you did this for me, and then I did this for you whatever. I mean these are the, this is this dynamic give and take, so um that was all really helpful for me to hear. So maybe a follow-up question for you then because I'm loving this conversation, is just um you talk about you know the critical edge but also the subversion in your commentary, which I love and um and and so I wonder what are some of the things you're seeing um able-bodied accomplices um doing that is subverting some of that charitable mindset in churches that you're working with in your research? Where is that starting to show up in ways that are giving you hope maybe hopefully? Yeah I um so the one example that comes to mind that is not maybe as like, I don't know, dramatic as um maybe it sounds like I have in mind when I write these very dramatic things, but I feel like it makes such a difference is um this wonderful Catholic church that we did research with St. John Chrysostom which is right outside Philadelphia um Pennsylvania. Uh the folks there who were um have hosting and they still host these masses of inclusion which I mean have been these like they're just like scratching their heads what what should the masses of inclusion be like? Should it be entirely disability-led? Should it be mostly they just go back and forth until the masses of inclusion? I mean it looks like there are other services because now there's so many disabled leaders and participants so like what are we even talking about? But one of the really lovely things when we had conversations with the disabled leaders and some of the um family members of disabled folks in the congregation um and the director of parish ministry there is that the director of parish ministry, when they would talk about um real growth and um beautiful fellowship right, that's happening she would kind of constantly point back and say, "But we have struggled to do this well and we have failed and we have made mistakes and we're still learning, and it's still hard and we're not all the way there." And I found those movements to be gracious um and important and de-centering right of um because she herself was not a person with a disability but she was in this position of leading this ministry and so, I um really yeah that that's kind of what I think of and so I guess it's like this is good for me to hear myself say out loud, because it's more gracious maybe and more gentle um than I might imagine it to be and more subtle uh because um when I'm saying like repentance and confession, what I hear in that um kind of uh speech that, you know, she uses is humility and then I hear um I hear those, I hear that kind of repentance and confession but I hear it also in the sense of like de-centering and continuing to uplift the wisdom and insights of disabled leaders and wanting to continue to grow in fellowship not just with people with disabilities, but with Christ and that looks like Jesus to me and that um that's a really, iIm not a gentle person and this is a really compelling example to me that I go, "Yeah that that must be Jesus doing that because um I couldn't have imagined that grace you know in these conversations."
Heather do you have any other questions that you or any comments that you'd like to offer Erin? Um I had one other comment if we have time, I just wasn't sure whether we did or not. I highlighted it just before we started um and uh it was just this idea um that of of the place that people have at the table and I was wondering whether there were any other stories that you had because your commentary was so short I found myself wanting to have access to more of the stories, that I guess will come out in your book and I'm excited about that. Um for ways that people are making space at the table, um at Vox we talk a lot about you know making space for others at the table and I um I love thinking about the the vision in Luke 14 of um the banquet being held and everybody around the table, at one stage in in the uh story has a has a disability, they're lame lame, poor and blind um and and so I wondered because my my imagination starts to think about all the accommodations that have to happen to really bring folks with disabilities to the table. Um I I've had a child with G tube, I've had um you know issues with navigating table legs around power wheelchairs, um there's so much that's practical in this idea of um drawing people to the table, are there things you're finding that are helping to subvert the challenges of that?
Wow so yes, but I think um the challenge is still, there you know, it's very real. Um I think that maybe I would just share a couple stories of my own experience. Um you know COVID has been so difficult for our family we, um Lucia's immunocompromised and she wasn't vaccinated until um really right on Christmas so we were trying to be so careful. And in the United States they kind of, um CDC rescinded the mask mandates and so churches start taking their masks off and all that stuff um but I think that one of the things that um is is so kind of incredible about obstacles and tables is, and so this maybe does mean I'm more of a believer in miracles than I usually act like I am, is that um you know Jesus, I feel like the the Spirit you know blows where it wills, right, so it's like there will be these moments of of access that are surprising and unanticipated and so if, one of those for us in COVID was like we started attending the zoom prayer hour of this incredible church that um ministers in in Trenton. And this really disenfranchised city there and you know connecting with all these folks like we didn't know them, we were just connecting with them online we feel so you know we, Lucia was so included, we felt so included connected, come to find out like we can't get her in their building because it's so inaccessible and it wasn't just one of those like you could put a ramp here or there, it's like once you got in the sanctuary you had to go downstairs go to the bathrooms, so it was like you know multiple access issues and you know this was I I like I was like I don't know what to do with this because we were given this gift for six months right of like being part of this community um and that never would have happened like we would have never because we couldn't get into that building, we would never be part of that, and so like what do i do with that? Because I don't want to like not be, I mean I'm so great gracious for that but I'm also so angry right that those obstacles still exist and um you know. I think that this church you know, it's a very poor church like they don't have the the money to do anything about this and so we're just sort of like raging about it together and um calling on God to do something, but this is the interesting thing about that is like I'm calling on God to do something and feeling so angry at the church right? Just not this church but just these obstacles and then you know Lucia's uh school sends a teacher out to our patio to teach her outside and that teacher shows up on our patio and says, "Oh Lucia you know everyone at school loves you and misses you and I'm gonna love you because everyone loves you. I don't even know you I'm gonna love you." And I'm like "This is Jesus."
I mean it it just I I was just almost in tears, I'm almost in tears every day after the lesson she has with her teacher because that incredible love. And then you know she has a friend that she has developed a friendship with during the pandemic who you know they're seven seven-year-olds Lucia is non-speaking, this is another typical seven-year-old but she Facetimes her, her family like brings over dinner for us, all these things so I guess you know, I don't know where I'm going with this, but I guess what I'm saying is like what what I always kind of feel like is the tables are part of the problem right? It's like the the image of the table and the idea that the host is the church, it's like freaking let go of the table, like let Jesus you know be the host you know, do the ministry, take the table. And so then part of I think my you know desire and heart is just to amplify like where I've seen Jesus even if it's in these secular places to amplify where this church ministered to us. Um I think when I start like trying to dig in and solve all the problems by myself I just start over functioning and I think these are problems that we can all work on together. I think that they're problems that ideally you know the church and individuals come alongside us and we you know struggle together but I do, like this is the thing, I want to be so so, I mean I am so so angry about these experiences of injustice and COVID but I also can't deny um how Jesus makes a way when there seems to be no way and you know, I think that, I I don't know, does that resonate with you at all?
Yeah it really does um, and I think I think the the key thing for me that you you said was you know remembering that we as the church have to let go of the table, that it's not our table, we are not the ones who are the host. It is God's table, God is already hosting this banquet, all of us are already welcome at this table um and and we need to look for the ways in which God is already creating the access for us um and mostly do a lot of work just like not putting up new barriers for each other to to make it harder for us to get to where God wants us to be so yeah thank you. Wow this conversation continues to be so rich and I can glimpse Jesus here with us too so thank you for that. Um our final question is around self-care. These issues are not
are not distant from our life, they're right here in our messy, our complicated
beautiful lives so we wanted to ask each of you how you care for yourself while you're doing this work that is so close to you and maybe Heather can start us off this time.
Yeah um, let's be honest self-care is really hard, like maybe that's just me but I feel like I feel like any conversation around self-care especially in mad and crip spaces, uh it it's it's a really complicated topic um and I feel like so often it gets really multi-layered with like shoulds and ought tos and ableism and um, I don't know just some world that I've never experienced where people can just take you know an hour once a day for themselves to do something that is purely relaxing, I'm not quite sure where that exists. So I just I thought like to start the conversation let's just put it back to one side. Um and then it's winter and then it's a pandemic and then I'm a power wheelchair user in a place that gets a lot of snow and um then there are a lot of people in my all of the people who have been in my COVID bubble all have disabilities so then it's one disability layered over another and it's multi-factorial in ways that um break my, I didn't do stats very far through school, brain. Um so although that is my reality um, but in the middle of that I'm fortunate that our city has a waterfront that is gorgeous, we've got about five kilometers of water front trails that are like asphalt paved and the city keeps those snow free almost every single day of the entire winter so I can get into my accessible van and drive down to the waterfront and wheel around the waterfront um and even though it takes like half an hour on each side to get myself out the door and back in the door with enough warm clothes to do it, um that's something that's uh really good for me um, it's even better if I can meet up with a friend um and do that stroll together. Um but I'm missing out on a lot of the things that I would normally do um like uh meeting up with friends in person and sharing time, listening to live music uh with other humans in the same room, and I'm currently missing out on a lot of the foods I love because I had a horrible allergic reaction last week and we don't know what it was to so um now I'm eating just the very very very safest of blandest of boring foods which is um hard so this is a long answer, but I think it's important like so much of self-care for me at this point is the basics: it's eating, it's sleeping, it's pacing my energy levels, it's using my wheelchair properly, it's not over scheduling myself, uh and it's trying to connect and have really meaningful conversations like this with other people on a regular basis, it's, there's nothing fancy or flamboyant and there's no instagram posts happening based on my self-care routine but um it's gotten me through 22 months of pandemics so far and hopefully it will last until the pandemic's over at least. Awesome a lot of that sounds familiar to my self-care needs, Erin how about you? Well I appreciate Heather naming how challenging self-care is. I always tell people when they ask about you know what makes a difference in my life, it's Medicaid for my daughter--so it's it's nursing private duty nursing supports for our family which is why we live in New Jersey and we really can't move to you know many other places because we have everything set up here and like I talked about she also has wonderful teachers but that you know I think it's really important to name that, because it while I I completely agree, I mean taking walks outside is like my thing. I in fact I feel like it's just everything's going poorly if I just like go outside like things get a little bit better and so that I'm I'm really grateful to live in such a beautiful area of the country and we have the same thing paved paths and Lucia loves to go on walks. But I also know that like I couldn't work um if she didn't have nursing care, I couldn't sleep at night if she didn't have nursing care, um all those things that's just so critical and then it's been so tricky because of the pandemic so like that's why I have her today her nurse has covered um and you know we're in a bubble together and her other nurse's son tested positive for COVID so we've been without nurses for several weeks and there's you know, I I love being with my daughter but you know it's like you're trying to work and juggle, all these things and you know that whole like not really being able to be in one place at once because you know at the same time that you're trying to work, you're answering insurance calls or whatever and all those things so I think that um really being able to not multitask, to me is is rest and self-care. I've actually, I used to do a ton of centering prayer but I've been um doing the Ignatian examine uh in recently and it's like so moving to me to like look back and and see where God, you know, was with me in my day and maybe I missed it and didn't even notice, and so I think that that those kind of like restorative practices are really important for me because I think so much of like what self-care holds out to us is like cheap and not restorative and so um trying to be intentional about that. And at the same time Heather what you said like rings so true it's like well this doesn't need to be another should or thing on my list but I think that you know like I that's why I think I'm so passionate about justice because I want everyone to have the supports and accommodations that they need to live their lives fully and you know I I I don't even know how someone can think about something like self-care you know when they're not safe or they can't sleep or they don't have proper medical support or access or these things, and so you know it's it's a it's a prayer for me right, that like um everybody would actually be able to have their basic needs met, let alone be be restored
Thank you so much Erin and Heather. And I was just thinking Erin while you were talking, my therapist said to me a few weeks ago because I was struggling with my own self-care she said, "Now Amy, what's your bare minimum level of self-care that you can have so you can sort of scrape through this time of your life?" And I think um my yeah my self-care level has been bare minimum lately so that's okay too, um I think for me it helps me to to get let go of those shoulds as well like, oh i should be doing xyz and here's my little list of these little mini things I can do for myself. So we um we wanted to say uh just in the interest of time that we're going to be ending in a few minutes and we just wanted to say thank you both so much for taking the time to come and Lucia as well for taking the time to come to be with us today and um do you have any uh closing thoughts that you wanted to share? Uh Miriam and I wanted to thank you both for taking the time to write and submit and we really enjoyed working with you through the process the editorial process uh in the journal.
I guess I would just say thank you. This journal is a triumph, um it's such a gift to the world, and thank you all. I know that I mean speaking of self-care it's like I know this takes a lot of effort and energy to do this but, um to be able to, I've been listening to podcasts, to be able to hear from all of these voices and perspectives, to be able to read all of these pieces, thank you.
Oh thank you so much, Erin, it really is a labor of love from from Miriam and I, and you know we tr you're talking about over functioning before and we try not to over function in this disability, like mad and crip space. Uh so yeah we would appreciate your prayers too for for us as we're continuing to just learn the way forward and how we can best um serve the mad and crip community. Yeah I would just add that to that thanks um my own. I um I recently attended a conference on autism and the church online and went along to the publication conversation and one of the questions that was asked and I don't think was well answered was you know "How are journals and publications um supporting the needs of those who are neurodivergent in that particular case, but those who are mad and crip and neurodivergent um in terms of the process?" And for me it was just so incredible to be able to go through this process for the first time um with others who I knew I could be I could be my full disabled self with, if it if it didn't make sense, if I if I needed it broken down into smaller pieces, if I needed an accommodation, you know which I can get at university, I I had that in the editorial process and I was just so grateful to be able to begin um that part of my academic life with those accommodations and I think it's it's not only um a gift to those who are um going to submit in the future and and you know if if you're listening to this and you're thinking about submitting and you are worried because of those things like I really would encourage you to work with Miriam and Amy on this. But I also think it's um it's an example that other publications need to start to um consider if they want to be talking about disability and disability theology, then they need to have people lives experiences on the editorial board so that there is space for and assumptions of the need for accommodations in the editorial process, so thank you so much for that. Thank you both and see you next time on our podcast, I hope again soon.