The Mad and Crip Theology Podcast
This podcast is hosted by Amy Panton and Miriam Spies. We are Mad and Crip theologians who want to contribute to change. Join us as we talk with theologians, artists, activists, writers and members of the mad/disabled and crip communities who are doing important work in Canada and around the world. This podcast is an opportunity to model how faith communities can engage in theological and spiritual conversations around madness and cripness. For accessibility, transcripts are included beside the podcast description.Watch the podcast with captions on our YouTube page here: https://www.youtube.com/channel/UCRUW9z5hoqP_WK74hg3N8bQ
The Mad and Crip Theology Podcast
Season 3, Episode 1: Erin Raffety, "From Inclusion to Justice"
Amy & Miriam speak with Erin Raffety, author of "From Inclusion to Justice: Disability, Ministry, and Congregational Leadership." She is joined by her daughter, Lucia.
To purchase the book, visit https://www.baylorpress.com/9781481316941/from-inclusion-to-justice/
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Welcome to this episode of the Mad and Crip Theology Podcast, we are delighted to have Erin Raffety and Lucia back with us again. Erin is an amazing person and an anthropologist and a Presbyterian minister and-- and-- and-- the author of two-- two new books, one of which we'll be talking about today. So it's called: From Inclusion to Justice: Disability, Ministry, and Congregational Leadership. We'll put the information on our website, but first, Amy has some announcements.
Yeah, so just a couple of announcements before we get started with chatting with Erin, so our new Journal issue is out, and the topic of the journal, um, for the spring is on Caregiving and Care receiving. So we would, uh, recommend that you click the link, uh, which should be at the bottom of the podcast information there, so you can take a look at that, and it's the biggest issue that we've ever put out, and we're very very proud of it. There are a lot of wonderful, wonderful, pieces in this issue, especially creative work, just some really beautiful stories that we're sure you're gonna love to read. And we've also released our next call for content for our fall 2023 issue of the journal, and that is going to be on trauma. So, uh, how you are navigating trauma in your own life, and the ways that you and your communities resist the oppressions and, um, other sort of things associated with trauma, we just want to know how you integrate spirituality or what spiritual practices you have that help you as your healing, and-- and also living with with your trauma. So we look forward to receiving some work from you, and if you want to chat with us, you can always send us an email, um, and our contact info is in the podcast, uh, Twitter there, so, thanks.
Awesome. So Erin, we wondered if you could introduce yourself and Lucia, and we actually-- the conclusion of your book. So the last two paragraphs.
Yeah, thanks so much for having me, so, I'm Erin Raffety, and I am a lecturer in the Princeton writing program at Princeton University and I teach a writing course for freshman students right now called Disability Justice, which is so fun, introducing them to a lot of the things that this book deals with, and I also do a lot of research in conjunction with Princeton Theological Seminary, and the Centre of Theological Inquiry one of my current projects is a qualitative study of Christians living with chronic illness and long covid, and so, we've actually collected all the data for that, and we're in the throes of analyzing it, so hopefully by the time this comes out I have something to say about that, which has just been so powerful hearing those experiences, uh, and obviously, I'm also a parent, this is my daughter, Lucia, who's just turned nine years old, and I talk about her a lot in the book, I've learned a lot from her, she's a really good teacher when it comes to learning about disability and ministry, and we're in my living room, I have dark brown hair, and I'm wearing a burgundy? purple? I don't know, turtleneck and Lucia is wearing a, um, gray shirt, and she has her hair in a ponytail, and we're snuggling together on the couch. So that's my introduction, uh, and then yeah, um, thank you so much for having me Amy and, uh, Miriam, I love what you're up to with the Canadian Journal of Disability and Mental Health, and with the Mad and Crip Podcast, and, um, like I said, I-- before we were talking I said, you know, you all are taking over the world, and I am here for it, so more of that please. Yes please. Um, and, uh, yeah, but thank you for inviting me to talk about my book today, From Inclusion to Justice, and I know you all recommended that I read a little bit from the conclusion, so I'm really happy to do that. This doesn't get as much play as some of the other chapters in the book, so it's kind of fun to to start here. So-- and then, Lucia, you're all over these pages, so it'll be fun to have you listening in today. So, on page 203, this is the last couple paragraphs I write,
"As I wrap up this book, the world Is entering year two of the pandemic, and we are all fatigued, disheartened, and frustrated. The stories I share above are not the stories I expected to be telling about disabled ministry and leadership, Christian congregations, or the world that needs them, and yet it is important to witness to how disabled Christian leaders and ministers are being used by God at such a time as this. The angst and the suffering witnessed in the pandemic remind us that the world is not as it should be. Especially for disabled folks who have disproportionately been affected and endangered by, and died of COVID 19. And yet, God is still ardently pursuing justice, if we can only behold Ministry and leadership in the new adaptable, collaborative, ways in which they come to us. I think about how disabled leadership in each of these instances: Lucia's communication, the TCNJ students laments and invitations for help, and Martha's advocacy, are not solo acts, but bids for intimacy, understanding, dignity, and collaboration in a world that so often doesn't make, or have time for those things. Disabled leadership does not lift up the mighty and the powerful, but makes a new way for dignity to replace agency, for our collective humanity to be affirmed, as we leave no one behind. In fact, in its defiant, collaborative, coalitional work, disabled leadership makes leadership accessible to all. Undermining hierarchy, foregrounding relationship, and magnifying Jesus's Kingdom for all. I once worried in my heart of hearts, as a parent, that Lucia would not be able to give love as the world gives it. And she still can't. So I quote-- So I suppose she gives love in an extra worldly way. Her love becomes the mirror I didn't know I needed. When her smiles radiate through her body so viscerally that she shakes with joy, I forget to worry about what I look like in response. When her health care and rights are threatened, I forget to care what anyone thinks of me, or what it requires of me, as I become an accomplice for justice in this world. And when she reminds me that being disabled offers insight, expression, justice, and dignity to God in a world so short on those things, I wonder if I can show up and embrace myself too, just as I am. After all, true love comes from God. It cannot be anything other than what it is in this world. The challenge for non-disabled people is to stop trying to get it to conform, so we can simply receive it. The challenge for disabled folks is to be dignified and amplified in the ways they give it, so that others can also receive it. The challenge for us all is to journey toward justice with Jesus, even in a pandemic, even with the church in crisis, even when the world tells us otherwise. It can be done, but only if we do not leave one another behind.
Thank you so much for reading that, Erin, such an awesome ending, and so timely for us, as we're still in the pandemic, um, sadly. Yeah, at this time. We-- we wanted to start by asking you, so why did you want to research and write this book? Um, as grad students, I think we both have a bit more appreciation for how much time, and work, and like, what a community project a book is, so, why did you want to write it?
Yeah, so the short answer, but of course, I won't only get the short answer, is that I-- when I was teaching in Practical Theology at Princeton Seminary, people knew that I was working on disability, and would often email me, and ask me for resources, like what should I read, you know, what's a good resource for my church, and I felt like I could never send them just one book, so I would send them this, like, hodgepodge-- like here's this article, and here's like, this little excerpt from this book, and this, and that, I would sort of put together this package for them, and when you do that enough times, you kind of feel like, "oh, maybe there's a book to be written here, and maybe I need to write it." And, I think on the kind of more theoretical, theological side, just thinking about practical theology as a cultural anthropologist, as Miriam mentioned, I do my research, I learn from people, um, and I need people to better understand the world around me, and culture, but I've kind of now made my home home as a practical theologian in arguing that I need people to help understand what God is doing in the world, and so, I really wanted to make a contribution to the-- to disability theology, and adding more ethnographic data. Um, especially, like, really listening to disabled ministers, and leaders, and then listening to churches because I had heard, obviously I was getting these emails, I heard so many churches were struggling to do ministry with people with disabilities, and then I think on the kind of, like, theological side, I felt concerned that I didn't see disability theology pushing past the idea that disabled people are made in the image of God, and I just felt a little bit frustrated, I felt like, "well there's-- but there's-- yes, you agree-- there's so much more, right, in terms of, um, disabled people being called into ministry by Jesus, um, and transformed, uh, by the spirit, and that's the movement I make in the book, is kind of this Triune, um, theology, right, and really thinking about not just made in the image of God, but nurturing disabled people in ministry, and receiving their leadership, so those were things that I felt, um, passionate about, and then finally, I had this hunch-- you know, I had this hunch that I was going to have to have these difficult conversations about ableism and inclusion, because, at the time, I was, you know, clearly identifying as a non-disabled person, and feeling like, "wow, I think that the conversations that the church's-- church is having are not going deep enough, and if we like, we don't talk about ableism, and we don't talk about ableism's relationship to inclusion, we are not going to be able to do better ministry, and I felt like, as a person who is non-disabled, like I could say those hard things, hopefully, to my non-disabled Christian siblings in Christ, and maybe they could hear them, right, in a different way, because I was watching my disabled siblings in Christ say this stuff over and over, and people just weren't getting it, and I thought, well, if I can go first, and sort of, show how one reckons with the sins of ableism in their own life, then maybe this will be something that will minister to other folks, and we can continue to repent as a church, as I feel that we really, really, need to, before we can move forward.
Yeah, when I got your book, and I thought, "okay, I don't-- I didn't need to write my thesis."
Thats not true!
Don't worry, I'm still writing my thesis, but I was having the same lament over-- over how insular and how-- how new disability theologies actually are, so I'm-- I'm glad we're starting to write it. Um, we-- we have a lot of different listeners, some are like us, working in this field day in, day out, living in this-- by this, day in, day out, but some others are newer to this conversation, so before talking about how you-- how we critique inclusion, can you give us a brief summary of-- of what inclusion is and how it operates, and then how you critique it?
Yeah, so this was something that was really powerful to see come out of the data. So we did research with 11 different, uh, Christian congregations, different denominations, in the New York, New Jersey, and Philadelphia area in the United States, and so it's a small sample, but it was folks who self-selected into our study because they were doing ministry with people with disabilities, and so, there were disabled people in their congregation, or leading in their congregation in some way, and they either felt that they had something to contribute to the study, or they really wanted to improve, in terms of their-- their ministry they wanted to learn some things, and what was just so striking is, across the board, um, we saw that everybody was talking about inclusion, everybody was talking about inclusive ministry, and everybody was really subscribing to something that I call in the book, "The Paradigm of Inclusion," and I go into the history, a bit, in the book, of the disabled people's movement, especially United States, and I talk about the Americans, um, with people with Disabilities Act, and I talk about how inclusion is structured in such a way in the United States, and again, so this, you know, may differ across context, and I always say to people, like, "If inclusion is working for you, and it's like, deconstructing power and decolonizing justice, like, obviously leave that in place, that sounds great," But-- but what I was seeing, is that, you know, people were working really hard in these ministries of inclusion, and yet, nothing was changing, like either disabled people weren't coming to the church, and didn't feel comfortable there, or disabled people, as we talked about, weren't moving beyond being affirmed as being made in the image of God to anything like ministry or leadership, like they weren't being equipped in the church, yeah, and so, you know, that really formed a question in my mind in terms of what was going on with inclusion, and so the ADA gives the definition of inclusion that something like, integrating disabled people into existing systems, so that disabled people can have equal rights, with non-disabled people, and when you start to like dig into that a little bit, the idea of integrating disabled people into existing systems is not going to change power dynamics, if the systems themselves are ableist. So I kind of dig into things like accommodations processes, in trying to open our eyes to, well, is accommodations-- are granting accommodations really doing justice? Well no, if they're not-- if they're working kind of in an individual case by case basis, and it really is the systems, and the institutions, right, that are preserving themselves and their power that are the problem, and in our churches, and I definitely talk in the book, I say able-bodied churches, because I think when you look at most churches, you don't see disabled people in leadership, so I don't think there's any way we can kid ourselves in saying that our our churches are not primarily run by, and run for, able-bodied people, so, this critique of inclusion that I-- I build in the book is concern with the way in which inclusion preserves institutions, rather than, you know, discipling, equipping, nurturing, disabled people's ministry and leadership, and how we're, you know, to use kind of Romans 12, like, conforming to the ways of the world when Jesus is calling us to think far more radical works of Justice.
Thanks so much Erin, that really helps, um, sort of give us context, and a little bit of a roadmap for where we're going-- going to be going for the rest of our conversation, um, and I-- I'm-- maybe I'll just like chime in and say like, um, this conversation is so important around inclusion because, um, like, stories that I hear, sort of, in my neck of the woods about a lot of people feeling like they have to hide their mental illness, or hide their diagnoses, right? Um people are scared that like somebody's gonna see them at the pharmacy picking up their antidepressants, so, like, we have to, like you said push, past, um, some of the more wrote conversations that maybe we've been having for however long and, uh, so yeah. So thank you so much for that, um, we wanted to ask you, um. So in the book, we found it very helpful that you clearly named ableism as sin. So can you explain what ableism is, and how you connected it with sin for us?
Yeah, so this was one of the reasons the puzzle around inclusion-- like, I felt like inclusion felt like yogurt in the 90s or something when people were like, oh, yogurt is like so good for weight loss, and I just keep eating more yogurt, and why am I not getting thinner? And it's like-- and so the inclusion felt like-- that was maybe a bad analogy, but inclusion felt really similar in that people were like, "we're doing more and more inclusion, and like, why is our church not more inclusive, and why isn't it working, and my heart-- I mean I'm laughing, but my heart actually really broke for people, because I think that they really cared, and then at the same time I think what I'm getting at is, I think embedded within inclusion is ableism. Like I think what inclusion is preserving, if-- if it's preserving the system, is it's preserving ableism. So it's just kind of scratching the surface, and it's never really getting at the deep roots of the sin, and the reason I talk about it as a sin is because I think it's a corporate sin, so I'm not, you know, in the same way kind of, we think about white supremacy and the way it's, you know, invaded systems of power, I think there's a similar thing going on with ableism, like I'm not necessarily pointing at any particular person, but I'm pointing at the ways in which our culture prefers certain bodies, and what you just talked about, Amy, how you know somebody might show up and be getting their anti-depressants and someone else sees them and judges them. Right? Immediately, as not fit, um, to participate or contribute to society, and these are kind of all, um, you know, ideas that are embedded in something like the social model of disability, where we think about disability not so much as a dysfunction or a deficit, but society's inability, right, to perceive disabled people as full persons, and to provide them with the support that they need. Um, for their everyday lives. So I feel like that-- I mean, if that's not the definition of sin, like I don't know what sin is, and I think that I felt that again, because I was speaking to churches that are, um, churches where able-bodied people are in power, I just felt like, this is what we need to talk about, because if we don't look this in the face, and we don't reckon with the sin, and we don't repent of this sin, like, we're not going to get anywhere, because this is just inflecting everything that we're trying to do, you know, like I heard these churches like being so, um, you know, they're proclaiming "everyone is welcome!" and yet, they're all these kind of microaggressions in the experience that disabled people are having when they're at the church, you know, they're feeling like they're a ministry, versus a person who's participating in ministry and leadership, and that's the way, kind of, programs, or special programs are being constructed for people and all of this, and so, I-- I felt like it was very important to to talk about that, and then I would just say like, one of the other things is a lot of times-- and it was just it's always been so striking to me, in the disability theology conversation, like, I don't know, we'll have these really progressive conversations about disabled people being at the center of ministry and leadership, and then somebody will like put their big hand up and be like, "but what about sin?" and like, really want to like, I don't know have some-- you know, have these conversations about scripture, and, you know, the old testament, and, you know, ways in which, you know, bodies were being discriminated against, and it's like, yeah, and that's all sinful, and that's in our scripture, and we want to get away from that, and like wanting-- but wanting to like, point a finger and make sure like disabled people know that they're sinful too, and I'm like, that is not the problem here! Like-- so I just felt like the message that I wanted to put front and center for churches that are primarily run by able-bodied people is like, let's talk about our sin. Let's work on this part, and, you know, if you want to talk about individuals, and like, disabled people or people of course, they're sinful, like everyone has stuff to talk about, but we-- this is our thing, right? Able bodied church in terms of: how are we going to do justice? We need to repent of our ableism.
I have so many things to say and they're all around in my head right now, um, but you're preaching to the choir and so, I'm-- as a choir member, I'm loving it, deep in my soul, um. Yeah, no, it's fine. That's interesting, I think I find disability theologies, they've also been focused on like, proving that disability is not a sin, and then like-- can we stop doing that? And just move on, you know? Can we talk about other things?
Now we kind of flip the tables, now that we heard your conclusion, can you tell us about your beginning? And how you use fingers and work so talk about a brief, like, overview of fingers and work, and why you chose to begin with that, is the question.
Yeah, I mean I actually-- I-- you know, I had a wonderful colleague read my book recently, and they were like, "you should have started with your own personal experience," so, I'm not sure that was the right thing to start with, but one of the reasons I started with this short story from thick Finkelstein about a wheelchair village, or a wheelchair society, um, is because Finkelstein was born in South Africa, and did a lot of anti-apartheid, um, activism but then was also a disabled person, and was heavily involved in the Disability Rights Movement, um, in the UK, and is really known to be one of the founders, when it comes to the social model of disability, and I just find that your average, uh, church is not very conversant in the social model of disability, and I-- when I started teaching at churches, and at the seminary, and I-- I taught on disability theology and ministry, I just found that this story, like, went so far in terms of helping people imagine a world that would actually be supportive for disabled people, and would take their bodies in their minds seriously, and foster, um, not just accommodations, but almost like, you know, I think of like Mia Mingus and her work on access intimacy, and I think there-- there actually is some like access Intimacy in the story, so anyway, I feel like there's so much in the creativity of this story that he tells about, um, there being a wheelchair village that was designed for everyone in wheelchairs, and then when some people who aren't in wheelchairs show up they are like hitting their heads on door frames, and their backs are really aching because they don't fit into this world that's been designed particularly for wheelchair users, and then he has-- he kind of just takes it so far, and that-- then the, you know, wheelchair users start taking up a collection for the disabled able-bodied people, like a charity, because, you know, "oh, they're really suffering," and then they make special helmets for them so they don't get hit them on the doors, and it's just like, the links of this, you know, metaphor, analogy, um, are not lost on people, like people get it, so I-- I wanted to, um, yeah, just, you know, invite people into the whimsy of that story, and then the other thing that I thought was really important is, I've now taught this so many times that I often have, you know, and it's particularly able black people will, um, hear the story and be like, "yeah, but not so fast, like, you know, um, isn't there something still, right, that, you know, would be there for disabled people if they had a society that supported them like, wouldn't they still--", you know, and people often want to say, "what about people with intellectual impairments," and, um, well, of course, like, the disability rights movement, and disability scholarship, disability studies, has moved well beyond social model for these very reasons, because people were like, "my body hurts, and I need to talk about it," and all this stuff, and it's more complex. I think that fundamentally, like, those assertations are not really for non-disabled people to make. Like it's kind of like, "uh, just breathe for a beat, and appreciate the wisdom of the social model!" And I just think that's kind of where the the book-- you know, going back to the sin of ableism, and reckoning-- reckoning with that, is like, yeah, you can sort of quibble about how this model is not perfect, but like, if you don't see the, you know-- what is it? The-- the stick in your eye, the log in your eye right now, like, you're never gonna get it. And so that's-- I, you know, I tend to be kind of a very in-your-face writer, and so, there we go, right, it's kind of really just opening up with this incredibly creative, amazing story that, um, takes you into what the social model has done for the disability rights movement, and, you know, the travesty, I think, of this, is that non-disabled people don't know these stories! And they need to know them. And so that's-- that was really the hope.
We thought it was a very wonderful place to start, um, and it-- it's a good really good story, and it makes me laugh every time I read it, so, um. We wanted to ask you a little bit about the ways that you sort of, were able to weave your ideas together for the book. So, we're wondering how you mingled together your ethnographic work, disability, and crip studies, and theologies in this book. Because it seems like it was a lot of things that you were thinking about and and weaving together, so, um, could you-- could we start there? y
Yeah, um, well, I've never really written anything like this before, as Miriam mentioned, my other book is a pretty classic, kind of, ethnography of, um, Foster families raising disabled kids in China, in contemporary China, and so I didn't really know what I was doing, the short answer, but I, um-- in spending time, you know, with these churches, and hearing their stories, and their experiences, that is, you know, really the way ethnographic knowledge is made is through experience, right? And-- and really taking seriously both what people say, and what they do, and so that's where I saw the paradigm of inclusion being something, you know, people were talking about, that they were committed to, and yet it wasn't really working for them. So, you know, being able to tell that story was really important, and then, kind of, some of the other wisdom that came out, and I mean, I can't speak to the whole thing, right, because it's a whole book, but some of the other wisdom that came out of those, um, churches was the stories of ministry and leadership, um, where you could really see disabled people making such a significant contribution to the church, and I talk about those as glimpses of the kingdom. And I think what I realized I was doing is, you know, both critiquing, uh, inclusion, not individual churches or people, but inclusion, right, saying, "this is the problem," um, so putting a finger on the problem, and then offering, like I said, some, um, hope, and some excitement, and really being able to amplify, um, the ministry and leadership that I saw, so, that was just so exciting to be able to-- to hear and experience those stories, and then, that really naturally, um, led me to this, uh, theological arc, like I said, of noticing that of course, disability theology needs to move beyond disabled people being made into the image of God, and, um, I had the ethnographic data to back up that, uh, Jesus was calling these folks into ministry, and the spirit was transforming, and I think transforming the church, right, via their leadership. So, um, ultimately, as I was interpreting the ethographic data, I really felt that there were passages of scripture that could help people understand, um, the arguments that I was making, and so, each chapter has a passage of scripture that is, kind of, the prologue to the chapter, and it's very intentional that all of those passages are passages that you wouldn't typically associate with disability, um, scholarship in biblical studies, so they don't necessarily mention people with disabilities, but I feel that when I was learning in these churches with disabled people, they brought me to new interpretations of those scriptures that I wanted to share, and I also, frankly, wanted this to be a bit of a preaching resource, right? That like, when you preach disability, and I think I say that in the introduction, like don't just preach the disability scriptures and be done with it, right? That, you know, there's so much wisdom, right, to be gleaned from disabled people. And then I think, you know, I am-- because I am trained as a-- like, my PhD is in a secular discipline, it's in anthropology, when I first started learning about disabled people, which was in my, uh, uh, field work, in China, and then I came back to the United States and I had this crash course, right, into trying to understand what I'd seen in China, I've-- naturally went to disability studies, as the discipline that could teach me about thinking critically about disability, and so, I think it's such an opportunity, right, for disability theology to take seriously the scholarship of disabled people in disability and crip studies, and in fact, I would be doing a huge disservice to the underlying arguments of my book if I didn't do that, because my whole argument is about the church being able to amplify the ministry and leadership of disabled people, and one of the things that I think we kind of miss in the church, is like, we're sort of like, "oh, this is so hard," and like, "why don't disabled people want to be in our churches?" and all this stuff, and it's like, there are tons of disabled leaders, you know, all across the globe, right, that we can learn from, and just because they're not in our churches doesn't mean, you know, the Holy Spirit, say, isn't working through them, so I kind of also have this-- I've always-- always had this like sort of bigger idea of what God is doing, um, in the world, and in society, that goes well beyond the walls of the church and I'm super comfortable with that, and so, I was really pointing people to Twitter, right, and seeing and learning from contemporary disability activists and, um, you know, I-- yeah, so I-- I think that for me, I ge-- I guess I just cannot-- I cannot approach this book, I feel like, without any of those pieces, like each of those pieces felt so important for me, in terms of building a sound interpretation, um, and I was so energized, I have to say, I didn't expect to be working so thoroughly with scripture, and in fact, that's where I have a ton of trepidation because I'm like, I'm not a biblical scholar, um, but I-- I-- I couldn't not see it, like, you know, it would-- like the second chapter when I talk about disabled folks wanting to be named in our research, in this way that, you know, I felt was, um, concerning, because I had put it by the ethics board, and said they would be anonymous, and I had to go back and say, "oh, do you want your names in this?" but then like seeing-- yeah, Jesus, you know, calling Bartimaeus by name into ministry, and I was like, well, this is it. You know, so the fullness of folks lives like enliven the scripture for me, and then I felt that we needed disability studies as well, right, to unpack-- like, if-- if Jesus is trying to do justice, you know, that took me to the disability justice movement, so I am not explaining this well, but to me, they're just all fundamentally interrelated and I really-- I really enjoyed being able to-- to do-- to do that kind of multi-layered analysis, um, I've never-- and then even bringing in my own personal story, I've never done anything like that before. And then I should just say, it was the encouragement of a lot of really wonderful people, so this is why you guys should let people read your dissertations while you're working on them, it was the encouragement of a lot of wonderful people reading my work, Miriam, you-- you've helped me tremendously along the way, um, that pushed me to share like my own story, um, and then pushed me to really be in dialogue with, like, as many voices as possible, and I think this is something that I-- that maybe the only way I can sort of sum it up is to say, you know, I talk about disabled leadership being collaborative and I-- I feel that this book is collaborative. Like, I could not have written this book if I hadn't learned from these churches, I could not have written this book without my daughter, I could not have written this book without disability justice, you know, activists, without crip studies, without disability studies, and I think, you know, that-- going back to naming, I think it's really important, right, that we-- we name these folks in our-- our collective journeys, and that we, you know, kind of like I was saying in the conclusion, that we don't leave anyone behind, we go together, and that we-- you know, this is-- this collaborative work that we're doing, so I think that was something that just like, it made sense to me as I-- I went along and I-- I learned from from disabled leaders.
Yeah, I-- I absolutely love it. Mainly because I do it as well, so it's similar to my thesis. So im-- I wasn't encouraged to do ethnographic work, maybe one day in the future, but-- although ethnographic work and crip-- crip studies, and-- and disabilities studies has opened my mind and my heart so much, and I think they can do that for the church too, for theologies.
Um, so thank you for doing it before me so I can thank you! Um, so a final question, hopefully we won't give away spoilers, but if we do it will just make people wanna read the book more, um, near the end of your book, you talk about, in generalized ableism, the importance of mirrors and the work of accomplices, so we wondered if you could share the significance of each one, and their connection to each other.
Sure! So, yeah, the last chapter of the book is called Mirrors and Accomplices in the Kingdom of God, and the kingdom of God was such an important, vision, uh, metaphor, for justice if you will, um, hope, because I always say, I don't know exactly what justice is going to look like for the kingdom of God, but, you know, here are some glimmers, and so, you know, I think one of the challenges for non-disabled people when they hear about how important it is to center disabled perspectives in ministry with disabled people, which, by the way, just always feel like the most obvious thing to say, um, but, um, non-disabled people, when they hear that, are kind of like-- some people, I think, kind of throw up their hands, and say, "well fine then, I'll get out of the way, like, I don't need to be here," you know, "you don't need me," which, you know, is a very defensive, um, an immature reaction, but, what I was kind of trying to get at in that final chapter is that I think there are something for everyone to do in this ministry, in the kingdom of God, and I think theirs are really important roles, and I wanted to get people excited about the important roles that they were playing, and then I also wanted to give them a little bit more clarity, and not that, you know, um, hopefully these rules feel broad and spacious to people, versus narrow and, you know, confining, but I think that too often, when we talk about ministry, we don't talk in specifics, like what it looks like, you know, for someone to minister, or lead, so I was trying to give those ethnographic examples throughout the book, and by the end of the book, a former student of mine, Bailey, um, who had talked about not having any mirrors growing up, and she's bipolar and in the ordination process, she had really convinced me that this is kind of the excitement, right, of the kingdom of God, is that there would be mirrors for people like Bailey. And Bailey actually herself, in the last chapter of the book, becomes a mirror to a younger, um, woman, or-- well, she's a child, who's looking up to her and-- and seeing herself in her, which was just-- it gives me goosebumps every time to think about, so, when I'm talking about mirrors, I'm talking about disabled people's ministry and leadership being amplified, right, such that other folks can see it, and perceive it, and appreciate it, and especially disabled folks, so they can then see themselves in one another, and that this is holy work, and this actually is interesting, because it kind of goes back to image bearing, which is something that I say we need to move beyond, and I didn't really get into this in the book, but I was like this is so interesting, right, that it kind of comes full circle in this moment of leadership for the Kingdom. So, that was what I was looking to for, you know, disabled people's ministry and leadership to be mirrored in one another, and then for non-disabled folks to be amplifying that ministry and leadership by being accomplices, and I pull that term accomplice from a autistic advocate, Raymond McCoy McDeed, who talks about the difference between allyship and being an accomplice, and she says, you know, when we're allies we're trying to help someone, um, we're trying to help someone, kind of, with their problem, but when we're accomplices we have skin in the game. And I just loved this idea that, you know, if we're really going to, uh, topple the powers that be, and things really are going to be, you know-- systems really are going to be torn apart, because they're not faithful, and they harbor ableism, it's gonna be messy and it's gonna cost stuff. And justice, like, should cost people in power something, so this is what I was trying to get at for non-disabled people, is to see themselves as accomplices alongside disability justice advocates, and disabled ministers and leaders, um, that they would be willing to-- I-- I love that verse about the mountains being made low, and the valleys be lifted up, they would be willing to be made low, right, so the valleys could be lifted up, so I kind of throw out those two-- two roles, and and hope that they can work together, um, in service of the kingdom, and then, yeah, the-- you know, I talk a little bit about my own journey as well, at the end of the book, I think that's what you guys are mentioning with the spoilers, and so the conclusion that I read, you know, I talk about the way that Lucia has been a mirror for me, so I think that also speaks to the dynamism of mirroring, is that like, you know, I think sometimes it's odd to think of younger people leading us, but that's literally what Jesus said, right, a little child shall lead them, so I don't think I could see my own experiences with-- yes, you know, with disability clearly until I, you know, fully embraced my daughter, and could see how tremendous her ministry and leadership is even without words, um, and then I went, "oh, I've been having my own experiences that I haven't been open about, and I haven't been willing to to look at, um, but she really provided that invitation," so this is the other, kind of, excitement around what disabled people bring, in terms of ministry and leadership, it's like, I don't actually think-- and so this kind of gets to the pandemic-- like, I don't think any of us are really happy with the world that we live in, like, I don't know about you guys, but I don't want to work five, six days a week, like, I want to work for four days a week, like, I think-- you know, and and it's not because I'm lazy, it's because I want to have a life that is supportive of my-- my health, and my family's health, and I want there to be rest, and I want us to relate to each other, not as workers, right, but as human beings, you know, who have dignity, and who, you know, like we say, are made in the image of God, but have time, right, for things like ministry, and activism, and all these things, and I want better systems, and I want systems that are supportive of lives like my daughters, who requires a lot of medical support, but she-- she is sure as hell worth it. And so, when I think about all these things, I-- I get excited, because I'm like, if we all have skin in the game, you know, together, um, and we are all kind of reaching for this fuller vision of humanity that I think disabled people, like, invite us to, I just think there's so many examples in the book, then I think like we're really, you know, moving towards, right, this this kingdom of God, like we're moving towards a new vision of what it means to live well with each other, to serve each other, to-- to love one another, and so, those were-- yeah, that was one of the things that I just I think I got to them in the book, and, to be honest, I had lost a little steam, and then the conclusion is very short, and I can't believe you guys read toward the end, but-- but that's-- that's what I just landed on, is like-- and again, this idea that like we can't leave anyone behind, I got that from the disability Justice movement, that the people that are most impacted, right, need to be continually at the center of the movement, and that, you know, really is my daughter, and so I-- I feel sometimes like, it's really just as simple as paying attention and listening well to her, right, and listening well to everybody in my life, but it turns out, it's hard, it's harder, right, to listen to someone who doesn't use words to communicate, but it doesn't mean that they don't have communication, right, and it doesn't mean that they don't have, you know, ministry and leadership, so yeah, those were some of the things that I learned.
Thank you.
Thanks so much, Erin. Oh-- sorry Mir, go ahead.
No, I just-- not to put Lucia on the spot, but, to give her an opportunity to add to the conversation?
Yeah Lucia, is there anything you want to share?
Thank you so much for everything you have been teaching Mommy.
Yeah.Thank you for being in the world.
Yeah, she-- she's moving her mouth which definitely means she probably will have some things to say, and we can get out your communication book later, and mommy got to talk a lot, and you didn't get to talk as much, but the other thing is, you are just so patient, yes, and yeah, you are a tremendous companion, for sure.
Yeah, for sure.
Anything else you want to leave us with Erin?
No, just thank you so much for reading, and I just consider it the greatest honour that you both feel that your work is conversant with mine, I think, um, you know, Miriam, I just the other week-- actually it was this week, a pastor was telling me who was preaching on John 9, and I sent him your article immediately, and so, this is one of the things that I think is just so exciting, is to see the scholarship that's coming out of, you know, Scholars like you both, and they'll, you know, all of this kind of wisdom that we're gonna have to, um, shake up a little bit, I think, the field of-- of disability theology, and I think it's time and I-- I think it's moving I just, like am really grateful for you both and I think we're moving in an excellent direction.
We're very grateful for your work too, Erin, and I, um, I really consider you to be a sort of like a mentor of ours, that when we think of people that we want to emulate, and whose work is very important to us, you're-- you're definitely on the list, so thank you so much for all that you do.
Thanks for having me.