The Distillery

What are the ways that we as a church can learn from people with disabilities?

Show Notes

In this episode, we speak with Dr. Erin Raffety (MDiv '08), PCUSA pastor and researcher, about her work with persons with disabilities in the church, and how she seeks to use her research to inform deeper, richer pastoral care and conversation within congregations. Erin's goal is to take seriously the voices, experiences, and contributions of people with disabilities in order to enable the church to connect with, learn from, and better minister to people with disabilities.



Dr. Erin Raffety (she/her) is a practical theologian who uses ethnographic research methods to study congregations. At the Center of Theological Inquiry, Erin is the Research Fellow in machine intelligence and pastoral care, where she studies how artificial intelligence and video game technology can support spiritual connection for people with disabilities and congregations. She is also the Empirical Research Consultant for the Imagining Church Project and the Associate Research Scholar for the Institute for Youth Ministry, both at Princeton Theological Seminary. Her book, From Inclusion to Justice: Why Christian Congregations Need Disabled Ministry and Leadership, will be published this year with Baylor University Press. Erin is an ordained pastor in the Presbyterian Church (USA), holds a Ph.D. in cultural anthropology from Princeton University, and is a proud parent of a daughter with multiple disabilities. 

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[Introduction]
What are the ways that we, as a church, can learn from people with disabilities? Dr. Erin Raffety is a research fellow in Machine Intelligence and Pastoral Care at the Center of Theological Inquiry at Princeton Theological Seminary. Erin uses ethnographic research methods to study congregations. She's currently working on a book on the importance of nurturing and receiving the ministry of people with disabilities in the church, and she has published widely on disability, youth ministry, and congregational leadership. Erin is an ordained pastor in the Presbyterian Church USA, holds a PhD in Cultural Anthropology from Princeton University, and is a proud parent of a daugther with multiple disabilities. In this episode, I speak with Erin about her research on persons with disabilities in the church and about how she seeks to use her research to inform deeper, richer pastoral care and conversation within congregations. Erin's goal is to take seriously the voices, experiences, and contributions of people with disabilities in order to enable the church to connect with, learn from, and better minister to people with disabilities.

distillerypodcast
Erin, I'm excited to talk to you today. I'm really grateful about this conversation and I want to dig deeper into so many things that we talked about in the pre-interview. And with that though, concentrating specifically on congregations and on your research with congregations and persons living with a disability. So can you talk to me in a general sense about your research in this area?

Erin Raffety
Sure! Well I kind of fell into my research in this area. It wasn't necessarily something I had in mind when I began my research as a cultural anthropologist. That's how I'm trained——I do research with human subjects so I always say that I do research *with* people not *on* people——I need people and I need to be in relationship with people to learn about culture——that's primarily what anthropologists study. But for me, it's also learning about what God is doing in the world. I always feel like when we spend time with people we see God more clearly in their lives and, you know, who God is and what God is doing and I think that is really the case for me with people with disabilities, with disabled people. When I had my daughter in 2014 and she was born with a progressive genetic disease of the brain I had already been studying disability for a couple years——I had gone to China and I had studied foster families that raised children with disabilities. So ultimately not just my ministry career, but my scholarly career became something that I really realized that God was leading me in and dedicating me to. And so what I ended up doing is taking my career as a culture anthropologist and kind of using empirical research skills to study congregations and to study the church. So, the project that I did——studying eleven different congregations in New York, New Jersey, Philadelphia area in 2019-2020——was born out of this challenge in how can congregations do ministry with people with disabilities and do it well, because that was something that was difficult but it was also an incredible opportunity to see how disabled people in congregations are ministering and leading despite the ableism that's pervasive in our society that's also present in churches and so that was my kind of most recent project that I'm finishing up a book on. But ultimately I would say I'm a practical theologian and I use empirical research methods to study congregations and I also get to use them, frankly, to just witness to what God is doing in the world. And I kind of feel like——gosh——sometimes I'm like "what was I doing with my life before I was in relationship with disabled people?" Because I just, I understand and I see things differently and I experience God differently because of my relationships with disabled people and I'm so, so grateful for that.

distillerypodcast
That's great. And you know what, I want to dig deeper into what you're saying about congregations, but I have some more general questions for you about how we, as a Christian Church, talk about people with disabilities.

Erin Raffety
One of the things that we see in the scriptures when Jesus is in ministry with disabled people is that even when he is offering some sort of physical healing to people, he is also offering and primarily focusing on it seems to be like some sort of social healing, really noticing that people in biblical times were often ostracized if they were a person that had a disability from not just their community but even their faith community. And Jesus is doing something powerful and different by saying/recognizing the dignity of this person and saying that this person is a viable and important part of the community. So I think for most human beings what it means to be whole is to be in relationship with a community and to be loved and accepted just as they are. So I think that "just as they are" part is really important when it comes to people with disabilities——is to not assume that that person might want to be "cured of their disability" and to listen to what their experience is and to recognize that human flourishing can happen in so many different forms. And that actually is a witness, I think, to the creativity of the Holy Spirit and to who our God is, that our God is a God of diversity that creates us in all sorts of different ways and so I actually think there's a real challenge there for able-bodied people to be open to how God is helping all these people flourish in ways that maybe *you* would not have expected because you kind of come to life with an able-bodied prejudice, but that somebody else might be living their best self. Being in relationship with disabled people, it just like kind of blows open your world because being in relationship with my daughter, I say "Hey, it's really not so much that she isn't flourishing, it's the world looks at her and they don't understand it." Right? But if they could look at her how God looks at her I think they would see that she is thriving.

distillerypodcast
I'm curious, then, when you talk about ableism and when you talk about this very ableist Society, can you give me or pinpoint some examples of what that looks like for people who maybe have never even thought about themselves in an ableist way——and we have so many ways that we're trying to consider ourselves, I think people are really——I think people are very honest and discerning——but I don't think they think of it in terms of this. So can you talk to me a little bit about what ableism looks like for people who may have never thought of it?

Erin Raffety
Yeah, and I think that one of the things when we talk about ableism, I think, people get really kind of fearful: "Oh my God, yeah, did I use the wrong term? Oh my gosh, should I offend someone?" And I think that, you know, even disabled people, right, they grow up in a country and a culture steeped with ableism. So we're all swimming in it, right? And so we're all working together to try to figure this out. And, so, some of these things that we call "accommodations" people will think, "Oh, well, that is unfair, right? That's a leg up!" But you know what we really need to think about is how our entire society, our entire educational system, right, our healthcare, it's all designed with a particular type of body in mind. It's designed with a particular type of mind in mind, right, when you think about mental disabilities or, you know, things like depression or ADHD or being neurodivergent. And so when people are trying to fit into the molds that we already have succeed in a classroom environment but they're neurodivergent and so their communication is being misperceived as being disrespectful because they're not making eye contact or, you know, say they're repeating things a lot——but that's actually a way of them trying to engage or trying to focus——and we're punishing them for that, you can see how quickly kind of this ableist bias really spirals to not just being unsupportive or unhelpful to disabled people, but really being hostile. I'll give you one final example of something that happened to me when I was a pastor at a church. My daughter had gone into the hospital and she had been very sick for quite some time and she was still very little and people at church didn't really understand her disabilities yet. But she came out of the hospital and I came to church that Sunday so happy that she was feeling better and just full of joy and a really lovely woman came up and said to me, "You know I'm so glad she's feeling better." I said, "Me, too!" And she said, "Who knows? Maybe she will even get up and walk someday!" And I immediately, yeah, I felt really misunderstood and crestfallen because here was this woman saying to me——so this kind of gets back to your question about wholeness——your daughter will really be——and she even said "normal", I think——she said maybe she'll be "normal" someday. And, you know, your daughter will be whole when she's "normal." And it's like, well, what is "normal", you know, none of us are normal. We're talking about some sort of ideal, you know, idea of what a child is. Well, you know, my child doesn't walk——and I don't think walking is really in the cards for her——but as I said, that doesn't mean she's not healthy. It doesn't mean she's not feeling better. It doesn't mean she can't contribute, right, to our church in different ways. And that really upset me because, you know? And so that's an example of, like, really casual ableism where someone doesn't mean to hurt you. But they're thinking about childhood in a very distinct way that is kind of about celebrating a certain kind of child.

distillerypodcast
How do we fully describe a person, then, in God's image in the way that I think you mean——which I think is beautiful, and I know your daughter and I know you mean it to be beautiful. But how do you think that language, then, reflects our theology?

Erin Raffety
Yeah, that's a really good question and I think, with respect to the ableist language we talked about, and even ableism in general, it just limits our imagination, you know? We end up with just a couple ways of being in the world and the research that I did with congregations——we end up with just a couple ways of doing ministry, and we end up with just a couple ways of being a pastor. And so what I really wanted to do and what I really needed to do theologically in the research that I was doing is I wanted to open people up to the fact that so often when we think about disability ministry or disabled people, you know, every church is right there affirming that disabled people——well, I shouldn't say *every* church——but almost every church is right there affirming that disabled people are made in the image of God and that is a great start. But it can't stop there because disabled people are also called into ministry by Jesus and they are transformed in leadership by the Spirit. And so we're really, you know, again speaking of imagination, we're really selling the kingdom of God short if what we're doing in churches is we've got all these able-bodied people running ministries to disabled people. But disabled people have their own gifts to share with the Kingdom and so disabled people, their calls need to be nurtured, right? Their gifts for leadership need to be nurtured so that they can go out and serve in different and particular and interesting and important ways that really blow open our imaginations, right? Because if we are expecting ministry to only look one way, you know, that doesn't seem that insidious but then you end up excluding people unintentionally who don't fit that mold. And so, there's a wonderful disability scholar named Rosemarie Garland-Thomson and she uses this term "misfitting" and she talks about how disabled people "misfit" in their leadership. So they're not going to do things in the typical way. But that can be a really good thing, and it's not necessarily that the church is bad, right, and the disabled persons certainly isn't bad but you think about that phrase——was it "Round Hole Square Peg" or "Square Peg?" So the idea is like there's this "misfit" that happens it can even happen with respect to someone's body, but it certainly happens with respect to the way someone needs to lead, you know, so they're going to have to find creative ways around that. It's not a good thing that society isn't set up for them. But when they start to help us notice all of these ways in which our church isn't working for them it probably isn't working for lots of people. So then we end up being pushed towards greater possibilities for human flourishing like I always talk about, but also greater possibilities for ministry and, I think, for the Spirit to really shake things up.

distillerypodcast
Describe to me, then——let's go to your research around congregations dealing with persons with disability.

Erin Raffety
The primary thing that we found is that congregations were doing that ministry through the paradigm of something that I call "inclusion." And "inclusion" roughly translates to "trying to get disabled people the supports and accommodations that they need to participate in society——or we can say in ministry——in the way that it is." So you can kind of hear the way that it is——the challenge there, then, is that if you just take disabled people and you plug them into your ministries and here you have disabled people and *your* ministries and so you're hearing "Oh, the church probably has an able-bodied bias and that most of the people in leadership are able-bodied." And what I tried to do in the book is explain why this paradigm of inclusion is a problem and then open up another paradigm which is a paradigm of justice in ministry with disabled people where disabled people now get to run the ministries so they're in charge of what it is they think they need or other people need and they get to discern what is theirs to do and they get to be nurtured and built up in their calls to ministry and leadership. And it's not that representation is the answer, like, we can't just plug disabled people into churches that have existing power structures of mostly able-bodied people in power, like, that won't really work. But, representation is *part* of the transformation. Because as people see disabled people ministering and leading and they can receive ministry from them as well as give ministry——it can be kind of an equal opportunity——they start to see God being glorified and God being encountered in different ways in their community. So, that's kind of the overarching argument of the book and the research is moving from this paradigm of inclusion to this paradigm of justice and recognizing the ministry that God is doing in disabled people's own ministry and leadership and really kind of giving ablebodied people the eyes and the ears to behold it. Because if we can't reckon with the sins of ableism in the church, if we can't repent of those, and we can't lament with disabled people that there are these problems, how can we even begin to work on the problems. And if then we can't listen to disabled people, how can we be in partnership with them as we work on these problems? So it's kind of moving step by step.

distillerypodcast
Yeah, that's really important, and I want you to elaborate on this paradigm of inclusion.

Erin Raffety
What I always challenge churches to think about is, you know, you can have a welcome and inclusion statement——that's awesome. Um, can you have a repentance statement where you talk about how you're repenting, you're in the process, right? Maybe you don't have it all together yet——nobody does——of repenting of our ableism in these ways: We've noticed that our building is not accessible; we've noticed that our worship is not accessible; we're not 100% there but we're working on them; we really value disabled voices; we want to be in conversation and connection with you really centering disabled people——because, if the congregation doesn't show that they're willing to do that, if all they're doing is kind of going out in front and before disabled people, disabled people get the impression, like, my frustration isn't welcome here. My sadness isn't welcome here. My struggle isn't welcome here. And what if the church could be this vessel for hearing the cries, right, of people who are struggling because there is this injustice and coming alongside them listening and doing justice with them. Yeah, but I think the first step is really listening and I try to encourage people that listening is doing, right? Listening for what God is doing, listening for the wisdom of the Spirit, and a couple tangible ways that a church can do that is listening to your community——so going and seeking out disabled people's groups where people are working for justice——maybe it's a political group, maybe it is a service-oriented group nearby that provides services for disabled people——and getting together with the people in those locations and listening to them and trying to understand what are their needs, what are their experiences. I love the Bartimaeus scripture in Mark 10 and, you know, what happens in that scripture you see that Bartimaeus is crying out for Jesus and he's on along the roadside. He's begging right? So he's been put in this position of having to beg for his livelihood and he wants Jesus to stop. And it is the crowds that say, like, "Shh! Stop! Stop! Stop crying out for him! You're bothering him!" And so often in the church we are more like the crowds than we are like Bartimaeus or Jesus, and so if we're going to pursue after Jesus we have to listen to the voices of those who are pursuing after Jesus and why it's been difficult for them and take that seriously. And so, the appropriate responses in these listening groups are "thank you so much for sharing——I'm so sorry to hear that you've had that experience, tell me more," and just really creating space for people to share whatever it is. Because those emotions of hurt and pain and sadness and anger are emotions that the church needs to get comfortable with if we're going to be in ministry with disabled people.

distillerypodcast
And so, what are some practical ways for the average congregation to be willing to enter into these conversations at the least——but at the most, willing to change some things based on what we are talking about——based on what they know about their congregations, based on their congregants who, twenty percent are most likely disabled——how do we talk about this with actual congregations?

Erin Raffety
We cannot make them feel like a burden when it comes to church. And so, even if everything is not set up perfectly, right——I mean, apologize if things aren't set up perfectly and they're difficult and talk through trying to practically help the person get in the door and all those things——but just keep saying how glad you are that they're there and keep saying we don't have it all together but we would love to have you worship with us, we're so glad you're here. People think that they're saying that, but with their actions perhaps which is feeling all nervous that, oh, you know, this person can't get in the door and it's really complicated and showing kind of how flustered they are, right? Or in saying, literally saying things like we don't have the money for blah blah blah blah blah the second or third time you interact with that person. I mean, all they're hearing is, like, there's no place for me here. And so you actually have to work really hard to counteract that because, yeah, your building will be inaccessible. Yeah, you won't have things set up to really support someone. But if they can tell that you really want them there, that will go a long way. I'm not saying don't ever do anything to practically support them. But the problem is often churches jump too quickly to, like, oh we should do this! We should do this! And they don't listen to that person and so you want to just keep this dialogue going where you're the recipient, right, of the experience and the wisdom that they have to give you, but you're also putting out this message of that you need something from them, right? They're part of the body of Christ. You're thrilled that they're here and you want them to stay. The other thing that I would suggest is, again, churches often want to start their own disability ministry but look around and see what ministries are already running in your community. So, it might be ministries in other churches like a church might have a respite program for parents of disabled kids. A church might have a support group for disabled adults. Your community might have a workers' rights group for disabled people. Whatever it is, start getting to know them and start seeing if your church can be in partnership with those existing ministries because the thing about a lot of those existing ministries is they're run by disabled people for disabled people like that's why they exist. They wouldn't be there if disabled people didn't need them or disabled people didn't create them and you don't need to reinvent the wheel. The reason I love that Bartimaeus text is because it's like one of the only texts in the Bible where a disabled person is named. And that's really sad to think that so often disabled people are, you know——people even would use this pejorative kind of "The Disabled." It's like they're they're nameless, they're faceless. And so, getting to know people as individuals, obviously, calling them by name——but then, what are ways that you as a church can amplify their ministry and nurture them, right, in their call to ministry. And so that amplification is naming the often prophetic but very important, vital, sometimes very service/servant-led ways that people engage with church life because those aren't often named and I noticed that when we started our study when we were doing our study with these elevent churches, we were gonna anonymize all the names of the disabled persons and even all the churches and everything because that's what you're taught to do from a research ethics standpoint. And then as we went on and the study went on all these disabled folks were saying well I'd love to have my name in there and we realized, like, you know, we are silencing their ministry if we don't use their names. Yeah! Like, God is doing such good work in them and through them, like, that's part of this transformation, this paradigm shift from inclusion to justice is that that they be lifted up. And so I would you know submit to churches: how can you lift up the ministry that's already there? How can you nurture the ministry that's already there? I mean, sometimes that's giving someone a formal role because they already play this informal role and we just haven't been creative enough to think how can they participate in leadership in this way. But I think it's also being really intentional——I talk in my work about how often disabled people call us into more participatory forms of worship because they're yearning for, and they're pointing out, how boring our worship services are, right? At how we've got a preacher just preaching *at* people and that doesn't necessarily work for them. Well that probably doesn't work for, like, seventy-five percent of the people there, but they're just not saying it. And so when people make clear like this is not only the gifts that I have but this is what I need, right, to really be able to participate in worship. Well, let's experiment with some things. Let's——that's you know talk to them more and sometimes conversations with people with intellectual disabilities isn't the best way to learn and so maybe it's just looking at their actions. When do they seem comfortable, you know, talking to people who know them really well and trying to figure out, you know——always with them leading us——how can our worship be led to be more participatory, but then, how can our congregation amplify their ministry rate and then support more folks in leadership? So I think those are the ways that I would go.

distillerypodcast
Thank you for sharing and I just am grateful, so grateful for this conversation.

Erin Raffety
Thank you so much.