#94—People with disabilities in religious communities [MIPodcast]

  • Almost fifty million people in the United States live with some type of physical or intellectual disability. That’s one in five. In this special episode, twelve distinguished guests—scholars, organizers, religious leaders, writers—join us to talk about how we can create communities of belonging where people with disabilities and everyone else can feel welcome.

    This panel discussion took place during the Summer Institute on Theology and Disability at Hope College.

    Learn more about disability resources in the Church of Jesus Christ of Latter-day Saints at disability.churchofjesuschrist.org. The video referenced during the episode is available here.

    About the Guests

    (in order of appearance)

    Devan Stahl
    Assistant professor in the Department of Religion at Baylor University. Stahl studies intersections between disability studies, theology, and bioethics.

    Munorwei Chirovamavi
    Executive director of “To Love a Child” in Zimbabwe, a ministry providing pre-school children with a secure and caring environment while feeding their minds, bodies and spirit. He is also a Baptist pastor and theological educator.Neil Cudney
    Director of organizational and spiritual life for Christian Horizons, an organization which supports people with disabilities in Canada and four other countries.Katie Steed
    Disability Specialist manager for the Church of Jesus Christ of Latter-day Saints.Reverend Christopher Rajkumar
    Director of the Indian Disability Ecumenical Accompaniment. He is an ordained minister of the Church of South India and a theological educator and writer.Andy Calder
    A minister in the Uniting Church in Australia. He is the Disability Inclusion Advocate with the Synod of Victoria and Tasmania. He is the 2019 recipient of the Henri Nouwen Award, awarded by the Spirituality and Religion Division of the AAIDD.John Swinton
    An ordained minister of the Church of Scotland and the Chair in Divinity and Religious Studies at the School of Divinity, History, and Philosophy, University of Aberdeen. He founded the university’s Centre for Spirituality, Health and Disability. His most recent book is Becoming Friends of Time: Disability, Timefullness, and Gentle Discipleship.Topher Endress
    Doctoral candidate and Fellow at University of Aberdeen Centre for Spirituality, Health, and Disability.Jill Harshaw
    Part-time lecturer in Practical Theology and Disability Theology at Queen’s University Belfast. She is author of God Beyond Words: Christian Theology and the Spiritual Experiences of People with Profound Intellectual Disabilities.Shelly Christensen, MA
    A pioneer in the faith community disability inclusion movement. She is an international speaker and consultant to numerous faith-based organizations. Shelly’s newest book, From Longing to Belonging: A Practical Guide to Including People with Disabilities and Mental Health Conditions in Your Faith Community, is a resource for all faith-based organizations and service support agencies to enhance and encourage participation and inclusion for each and every person. Shelly is co-founder and organizer of Jewish Disability Awareness, Acceptance, and Inclusion Month (JDAIM).

    Barbara J. Newman
    Director of church services for All Belong: Center for Inclusive Education as well as a special education consultant to Christian and Catholic schools. Barbara is a national speaker and author of several books including Accessible Gospel, Inclusive Worship.Bill Gaventa
    Director of Summer Institute on Theology and Disability and an ordained American Baptist minister. For eighteen years he was associate professor at the Rutgers Medical School in the Elizabeth M. Boggs Center on Developmental Disabilities. He now serves as a consultant, trainer, speaker, and author.

  • BLAIR HODGES: It’s the Maxwell Institute Podcast. I’m Blair Hodges.

    Almost fifty million people in the United States live with some type of physical or intellectual disability. That’s one in five. Maybe you have a disability or know someone close to you who does. If you can’t think of anyone, chances are someone you know lives with an invisible disability—a condition they experience but that isn’t obvious to the naked eye.

    How about religious communities? How many people there have disabilities on average? We don’t know. No one tracks numbers that specific. But there are studies suggesting some people with disabilities don’t feel welcome in religious settings. And that’s what we’ll be focusing on in this special episode: Accepting and including people with disabilities.

    The episode is special because it features a panel of twelve scholars and organizers who specialize in theology and disability—it’s the first time we’ve had that many people in one episode! I recently spoke with them at the Summer Institute on Theology and Disability held at Hope College in Michigan.

    This episode was created in partnership with the Church of Jesus Christ of Latter-day Saints. Before we get to the panel, we begin with a short video that the Church produced about people with disabilities and belonging in religious communities. You’re about to hear the audio here, but you can check the video out at disability.churchofjesuschrist.org؅ a website that has a lot of resources for people who are interested in disability and religion.

    VIDEO: “Two Purposes: Accepting and Including People with Disabilities”

    For people with disabilities, most doors serve two purposes.

    They let people in and they keep people out.

    So the question we have to ask is, “Do our doors let people with disabilities in? Or keep them out?”

    One in three. When people hear it, they don’t believe it. That one in three households has a person with a disability.

    At church you’ll hear people say, “But we don’t have anyone with a disability in our congregation. Because if we did, we’d know who they were.”

    “Because if we did, we’d build a ramp for them.”

    Except, right now, I don’t need a ramp. I just need the teacher to use a microphone.

    Right now, I just need a friend.

    Someone to pray with. Someone to tell stories to. Someone to bond with over our faith.

    But how can you bond when you’re invisible? Hiding in plain sight?

    Those without sight. The hard of hearing.

    Those with depression. Autism. Anxiety. Those who have a hard time fitting in.

    Those with fragile bodies. Who try hard, but struggle.

    I just need you to believe. Believe in me. To believe this place would be better with me by your side.

    Have you ever really thought about the things that make you belong? Truly belong in a community? It’s hard to describe exactly what they are. But you definitely know when you don’t fit in.

    People talk all the time about special needs. But these are not “special needs.” They’re everybody’s needs.

    We just want to be invited. Noticed. Loved.

    And that manifestation of love doesn’t have to be anything big. Sometimes the simplest things are the most meaningful.

    After all, faith isn’t about programs. It is about relationships.

    And reaching out doesn’t require the extraordinary. Just a regular outpouring of the ordinary.

    We can share. We can serve.

    We can contribute. We can help.

    We’re believers. Just like you. And just like you, we can listen. We can comfort. We can offer all of our support.

    For people with disabilities, most doors serve two purposes. But the doors here should only have one.

    HODGES: And now to the panel. We’re talking with twelve scholars from around the world and from different religious traditions about how we can create a spirit of belonging for everyone—including people with disabilities—in our religious communities.

    Questions and comments about this and other episodes of the Maxwell Institute Podcast can be sent to me at mipodcast@byu.edu. And if you haven’t already, be sure to subscribe wherever good podcasts are available and take a moment to rate and review the show. That helps us get the word out about what we’re doing here at the Maxwell Institute. We also strive to make the podcast as accessible as possible. You can read a full transcript at mi.byu.edu/mipodcast.

    Alright. Let’s dive in.

    * * *

    BLAIR HODGES: I’m Blair Hodges from Brigham Young University’s Maxwell Institute Podcast, and I’m here in Holland, Michigan with a distinguished panel of guests at the Summer Institute on Theology and Disability. The Summer Institute brings people from many different religious backgrounds together to talk about people with disabilities—specifically to ask what gifts, needs, and contributions that they and their families bring to our faith communities.

    I want to begin this very large panel discussion by having everybody introduce themselves. So we’re going to go around the ring here and people will tell us who they are and what brought them to the study of disabilities and religion. So we’ll start with you—

    DEVAN STAHL: I’m Devan Stahl. I’m a professor at Baylor University. I teach ethics. And I’m a person with a disability, which I discovered in seminary at a pivotal point in my formation and became interested then in everything disability theology had to offer.

    HODGES: Alright, thank you.

    MUNO CHIROVAMAVI: My name is Muno Chirovamavi. I come from Zimbabwe. I am the executive director of “To Love A Child” in Zimbabwe. It’s an organization that tries to respond to the needs of children with disabilities and work with caregivers. I’m also a pastor of the Baptist church and a theological educator with a number of seminaries and universities in Zimbabwe.

    HODGES: And what made you get interested in religion and disability, together?

    MUNO CHIROVAMAVI: The needs that are in the community, and the gap that we have been seeing where no one else was making a contribution. And we thought as a church we need to respond. And respond appropriately and informatively.

    HODGES: Thank you. Alright, next?

    NEIL CUDNEY: Neil Cudney. I’m the director of organizational and spiritual life for Spiritual Horizons, which is a large Christian faith-based organization that supports people with disabilities in Canada and in four countries around the world. My entry into this conversation, again, is very personal. I was identified having a significant learning disability very early on in my educational career—a significant form of dyslexia, which made for a very interesting journey. And also my adopted brother has Fetal Alcohol Syndrome. And then what was the final entry to this was I needed a job in 1987 and I joined this organization called Christian Horizons, which was supposed to be a temporary stop gap, and I’m still here.

    HODGES: Great.

    KATIE STEED: Katie Steed. I am the disability specialist manager for the Church of Jesus Christ of Latter-day Saints, and I’ve always loved people with disabilities and enjoyed working with them. When I was in grad school it really dawned on me how much quality of life we gain from our faith, and I wanted to do more so that my faith could be more accommodating to people accessing it that had a disability.

    CHRISTOPHER RAJKUMAR: I am Reverend Christopher Rajkumar from the Indian Disability Ecumenical Accompaniment. We basically work with churches, facilitating the churches to work on inclusion and accessibility. On forty-eight years that we work, one is networking the theologically trained persons with disabilities; and networking the caregiving organizations which are church based; doing disability theology and finally, working on accessible and inclusive church. There is another component we got into, that is interfaith response to disability that is inclusive in accessibility.

    HODGES: Thank you for being here. Alright, next?

    ANDY CALDER: My name is Andy Calder. I’m with the Uniting Church in Australia and my job is Disability Inclusion Advocate. And I’ve been a Uniting Church minister for twenty-five years.

    HODGES: And what got you interested in doing disability and religion?

    ANDY CALDER: In 1980 I lived for a period of time in a large community in the United Kingdom, and the sense of unconditional acceptance and belonging so was profound for me that it propelled me on my life trajectory, largely.

    HODGES: Well thank you for being here Andy. Alright, next?

    JOHN SWINTON: My name is John Swinton. I’m a professor in Practical Theology at the University of Aberdeen in Scotland in the UK.

    HODGES: And how did you get interested?

    JOHN Swinton: I spent sixteen years as a middle health nurse. Then I worked for some time as a middle health chaplain and so when I stumbled into academia in the early 90s, I just continued to think about that in a different context, a theological context. So, it just comes out my formation, out of my life, really.

    HODGES: And I think everybody in the room could agree there’s a lot of room in the academy for this kind of research. A lot of work to be done. Alright.

    TOPHER ENDRESS: My name is Topher Endris and I am a current PhD student at the University of Aberdeen in Scotland. I became interested in disability in theology in particular after doing ministry for and with people with disabilities and finding very few resources that I felt were appropriate and considerate of their full humanity. I felt like that couldn’t be right and the more I discovered it was right, that was all that was available. So I jumped into academia to help be part of a solution for that.

    HODGES: And what was your faith background?

    TOPHER Endress: Largely just Protestant.

    HODGES: Alright, thank you.

    JILL HARSHAW: I’m Jill Harshaw. I’m from Ireland, where I teach at Queen’s University in practical and disability theology. My passion for that issue is very personal in that I have a daughter who is now thirty-four years old, who has profound and complex intellectual and physical disabilities.

    SHELLY CHRISTENSEN: I’m Shelly Christensen. I started working in this field eighteen years ago and started a brand-new program in the Minneapolis Jewish community to work with congregations and faith-based organizations there to raise awareness and to help create pathways so people with disabilities could feel that they belong. Since then, I have become a speaker. I am an author. My new book From Longing to Belonging has just been published. And my point of entry into this field is a direct result of raising a son, Jacob, with Asperger syndrome, and realizing that his ease as being a member of our congregation, our synagogue, as a child, as a teen, and also as an adult, was very uncommon. That just fueled the passion I have for justice, fairness, and for people to be able to live the kinds of lives they want to live.

    BARBARA NEWMAN: My name is Barbara Newman and I work for an organization called All Belong, Center for Inclusive Education. I am the director of Support Services for Congregations. One of the things that got me into this as a special education teacher, we had students who were included for seven hours a day at Zeeland Christian School and then those parents really struggled to find places to worship, and were kicked out, sent away to find another congregation. So that really launched my opportunity to deliver supports in a variety of forms to congregations.

    BILL GAVENTA: I’m Bill Gaventa. I’m an ordained American Baptist Minister. Although, my work over the years has gotten increasingly ecumenical and multifaith. I’m partly in this work because I grew up overseas as a missionary kid, and when I came back to the States I was the one who felt like I didn’t belong anywhere, but I also had a passion for pastoral care that was focused on good old Baptist principles, social gospel. When I got assigned as a pastoral care student in a hospital, against my will, to work in a clinic with families with kids who came there for a multi-disciplinary evaluation, I had to struggle with “What does it mean for me to be a pastor in that setting?” and found there, from the stories of the families who came through, the lack of welcome in faith communities and have realized over the years that my helping them to find a congregational home has also partly been my own journey about helping people find home and community. And I’m the director of the Summer Institute on Theology and Disability.

    WHY WAS THIS MAN BORN BLIND?

    HODGES: Alright, so that introduces our panel here. I wanted to start the discussion by talking about a chapter in the Bible. In the Christian tradition John chapter 9 has an interesting scene where disciples ask Jesus about a man who was born blind. They’re asking a question, “Why was he born this way?” And that kind of question hasn’t gone away through the centuries. So I wanted to talk about some of the helpful and perhaps, some of the less helpful ways people answer that question theologically today. Because the stories people with disabilities tell and that people tell about people with disabilities can have a really big impact on a community’s welcoming of people with disabilities.

    So, let’s start there. What are some of the ideas that you’ve heard theologically? Bill Gaventa, go ahead.

    BILL GAVENTA: Well, a long time ago, a man who was one of my mentors said in that John passage what Jesus did was severe the link between sin and disability because the comment was, when they asked Jesus that question, Jesus said, “No. It wasn’t his sin. It was not that.” He severed that. I think still too many people, when they see a person with disability, ask why. As if they don’t recognize that limitation is part of all of us.

    I also personally think that we ask the “why” question about disability because we assume it means suffering—which sometimes it does, and that’s usually, though, at the hands of people who—most of the suffering that people with disability tell me about is the attitude of other people, and the attitudes of other people.

    So, I think we get involved in that question, that classic theistic question of “why something’s happened,” and so the question is how do we answer that about anything else? What’s our answer to the why question of “Why my wife had a bout with cancer?” or “Why my grandmother died?” or whatever. So, it’s not a different question than lots of other issues.

    I think we don’t give people with disabilities the chance to answer the question why, like we do, like “What’s the purpose of your life?” and “What is God calling me to do? Why am I alive?”

    HODGES: Right. I wanted to hear from Devan Stahl on that, because she found out she had a disability while she was going through school. So did you undergo any changes in how you viewed disability in religion at the time.

    DEVAN STAHL: I don’t know that I had really ever thought about it. I was an invincible twenty-two year old, so thinking about disability was not on the top of my mind. But when I was diagnosed with MS, I think a lot of what I heard was either, “It’s your personal sin,” which seems very anti-biblical, but there are still many who hold that view, or the lesser of that would have been, “It’s part of original sin. It’s not your particular sin, but it’s the sin of the world and that’s why you are this way.”

    I also heard, “It’s the thing that is going to refine you and make you into the person God wants you to be,” so it’s sort of a test of your faithfulness in that way.

    I think all of those were not helpful to me. It seemed to place extra blame on me at a time that was difficult enough, as I was trying to figure out who I was. It assumed that this thing was a bad thing that had happened to me. Even if I hadn’t been experiencing it that way. So I think the kind of explanations tended to make people feel better about being in communion with me. It was the kind of explanations that made them feel better, because they could explain it away, but it wasn’t necessary an explanation that was meant to help me deal with this new change in my life.

    HODGES: Sometimes I think the answers we give to people, or the ways we respond to people, help alleviate our own discomfort. Some of the answers that we’re eager to give—I think of Job’s comforters in the Hebrew Bible, for example. They were ready and willing to give Job all sorts of reasons for why he was going through what he was going through, but it seemed more geared to make themselves feel comfortable with it, like “I can make sense of this.”

    Shelly do you, coming from the Jewish tradition, and Devan, coming from the Christian tradition, do you see similarities there in how people respond?

    SHELLY CHRISTENSEN The similarities I see, certainly, are that society in general sees people with disabilities as less than others. I often just refer to Genesis 1:27, that we’re all created in the divine image, in God’s image. The important thing, I think, for us to realize and to really convey to others—who are uncomfortable when they meet a person with disability, who don’t know how to say the right thing, or they think they don’t know what the right thing is to say or do—is, I’m going to quote my Rabbi, Norman Cohen, who says, “When you look into a person’s eyes and you see the spark of the divine, you won’t wonder how to treat them, you’ll know.”

    And I think we need to remember that because there’s so much muddiness around our relationships with each other, to begin with. And in the Jewish tradition, and in many other traditions, education and accomplishment is such an important factor. It automatically, in a community that doesn’t understand that we all have a different path in which to live our lives and a different purpose for each one of us, that we get so caught up in “things have to be perfect, things have to be right,” and the beauty is in the imperfection. The beauty of that divine image, in being created in God’s image, is in all the imperfection. It’s in all the uniqueness that we each have.

    HODGES: Shelly, that raises the point that there are a lot of different kinds of disabilities. There are disabilities that deal with hearing. There are disabilities with sight, with mobility, and intellectual disabilities, and all of these can have different ramifications.

    John Swinton has written about intellectual disabilities. You’ve worked with intellectual disabilities, John. I’m interested to hear your thoughts at this point.

    JOHN SWINTON: Well it strikes me on the question your asking about disability and sin that there’s a tendency to engage in what you might call “lazy theodicy.” So, you have something that’s different and make up an explanation of why or how a good God could do this thing. And it’s just laziness because you don’t bother to think about the issue. You don’t take time to think about what the scriptures have to say. You just describe this label and you say, “Well, that’s fine I can stand back. Now I’ve got an explanation. I can then pray for your whatever-it-is.”

    But it seems to me that the apostle Paul is really clear that everybody has sinned and fallen short of the goodness of God, and of the glory of God, and that everybody will be transformed in the Resurrection. The mark of the body of Christ is diversity, not homogeneity. So, why is it that we pick out certain forms of differentness and choose to pathologize them spiritually, and not other forms. And to me that is just a human thing. That’s not a God thing.

    HODGES: Thank you. Andy Calder, you had something?

    ANDY CALDER: I’m recalling the perspective of a previous boss of mine, Elizabeth Hastings, who lived with Polio. She rather controversially made a statement one day that “Jesus would have done a whole lot of greater things for people, had he not healed as many people as he did, but rather said to people, ‘Go, be yourself, as you are. Live your life as fully as you can.’”

    So, that doesn’t give you a theological response directly to that nexus, but it’s the perspective of somebody who has lived with those comments coming at them all the time.

    The second thing I’d say to that is, people may have heard of a particular BBC production called “The Fifth Gospel.” I did YouTube it recently so I know it’s still in existence, but again it highlights the perspectives of people who have been subjected to these conversations and comments about the relationship of “What have you done wrong?” And it’s a very powerful film in that they ascribe a fifth gospel. And the fifth gospel is again, similar to what my boss, Elizabeth Hastings, was saying: “You are whole as you are. Go and live your life healed and live it in its fullness.” I just offer that as a contrast to a lot of the dialogue that goes on in the disability field.

    HODGES: Muno Chirovamavi, you had something to add as well.

    MUNO CHIROVAMAVI: It’s interesting that if that question was asked in my context of Zimbabwe, which is informed heavily by African traditional religion, it would have serious and interesting complications. Because the idea of causality in terms of disability is spiritualized. And by that I mean people would attribute it to different forms of the spirit world: ancestors, avenging spirits, witchcraft, alien spirits, you name it. To the extent that it becomes very difficult to unpack which kind of spirit is responsible for causing this.

    Instead of generating a solution, it can actually complicate the matter, and this then leads people to look for religious specialists, diviners, or traditional medical practitioners who will then be able to explain and be able to fight the problem. But after time, with the existing social disparities, people then take a religious specialization in the traditional worldview to try and make a living for themselves. So, they end up exploiting somebody, families that are already burdened.

    So, it makes very interesting reading, particularly from African traditional religion and culture. But if that question was asked it would have very interesting interpretations, I think.

    HODGES: Christopher, you had something to add to that as well.

    CHRISTOPHER RAJKUMAR: Generally, the people with disabilities are seen as less in every society. This is where churches and the theological practitioners think with three questions. How does God treat people with disabilities, especially in the light of Genesis 1:27 “in the image of God,” number one.

    Number two, how does the scripture, or how do the scriptures, treat people with disabilities. So, this where the religious practitioners come in and they started saying “this sin, this is not sin. These are the causes,” whether it is my ancestor’s sin, or my sin, or my parents’ sin. So, there is a difference in God’s approach to people with disabilities and also the scriptures approach.

    Then, with these two questions, the third question we pose is to know, how do the worshipping places treat people with disabilities? If they reflect God, or if they represent God, is it accessible and inclusive? So, this is how.

    Number two, when it comes in terms of healing, the narrations which are talking about healing in the gospels, Jesus mostly asked the people with disabilities to go to the society and to show after their healing. So, the healing also has to be seen this way. This is where John 9 comes in, saying that “to glorify God” is where the society which is practicing exclusion becomes inclusive.

    MORE ABOUT DISABILITIES AS SEEN IN SCRIPTURE

    HODGES: I think one of the tricky things there is some people read the Bible as though it’s telling the same story all the way through. They don’t see some of the tensions that exist in the text itself. So, they might look at some of the metaphors that Isaiah uses when he talks about disability in kind of sinful ways, or promises of the resurrection where the deaf will hear and the blind will see.

    It reminded me, Topher, of something you said. You started focusing on this because you found the resources themselves to be wanting in religious discourse about disability. So I’m wondering how you’re reckoning with scripture when you’re doing that because there are some scriptures that aren’t easy to work with, that kind of have an older sensibility when it comes to disabilities.

    TOPHER ENDRESS: I think that’s true, but I also would say there’s a tendency in a lot of Christian communities to demonize and devalue Old Testament, or Hebrew Bible scriptures, and count them as the work of a different God, essentially. That it’s a God who is vengeful and doesn’t care about the people of God and the communities of God. But ultimately, any problematic scripture could be re-cast, reread in light of the other narratives you’re going to find throughout the rest of scripture, and can be recontextualized through historical studies, but also through the way that traditions have reinterpreted these passages over and over.

    And so, I think there needs some acknowledgement that yes, there are problematic scriptures, and yes, if you were to read several of these pieces out of context and with our own modern understanding of disability as broadly bad, it’s easy to be convinced of your own rightness in this. But, if you were to read it in a different way, with a new acknowledgment that tradition is constantly being reinterpreted in scriptures, always being read by a community of people with a particular context and a history that they live into, I think it’s also just as possible to read some of those negative texts and acknowledge that they don’t have to purely be negative, but there can be good that is exposed through that as well.

    HODGES: It seems like a lot of religious communities can resurrect, almost, scripture. They can repurpose scripture and they can understand scripture in a new light. There are a lot of different possibilities that are open. When you read the Bible, you can read the Bible with new eyes, so to speak. And I mean I guess that’s kind of an ableist metaphor in and of itself, so we can’t escape some of this stuff, right? [laughter]

    Neil, you had something you wanted to add.

    NEIL CUDNEY: We all have assumptions when we enter into Biblical text, that we bring in with us. And John 9 is one of those texts that we enter into and we see the man as an object lesson, or we see the man looking for some kind of way that God is using him. He’s been waiting passively for all these years for Jesus to stop by. I mean that was the same problem with the disciples and we forget that this man has had an entire life up to this point. There’s that line as we enter into John 9, saying, “As Jesus passed by, he saw the man.” And that’s such a powerful image of Jesus stopping, and in that moment of seeing the man, restores to him his humanity, who he is as a beloved child of God, and removes this idea that the man is this passive object, but a cared for subject of his care.

    When we enter into these relationships, it’s us stopping and pausing and seeing the person first, when we enter into that conversation, when we enter into that dialogue. And we never can objectify people in those experiences. We’ve got to be bringing the image back to Genesis 1:27—this is a person created in the image of God.

    HODGES: I think this is the value of interfaith discussion about these issues, because one thing that Jewish readers of the New Testament have called my attention to is the ways that Jesus called people back to the ethic of the Hebrew Bible. This isn’t a new thing Christianity introduced, right? This was Jesus pointing out how to have a more integrated community, how to reach out to people who are pushed to the margins of society because of who they are.

    So, it’s really helped me to read that story—John 9—through a Jewish readers eyes to say Jesus is calling people back to an ethic that goes all the way back to Genesis. And as Topher said, this isn’t this Old Testament “mean” God, New Testament “good” God, this is an ethic that you can find throughout the whole of scripture that way.

    Jill Harshaw, I’m interested in your thoughts. You lecture in practical theology and disability theology.

    JILL HARSHAW: Yes I do. I lecture from a place of experience. And one of the things that strikes me about the John 9 passage is that it wasn’t either the man or his parents that asked the question. It was the disciples that asked the question. And I think sometimes that question is imposed from outside.

    So, for example, when my daughter was born and had very significant challenges, which at many times nearly cost her her life, people would say to me, “You must wonder why God did this to you.” And I went, “No. I’m not wondering that at all.” You’re asking me to wonder why God knit my child together in my womb to be the person that she was always designed to be, with all of the complexities of her disabilities? Why would I be asking that question?

    And then coincidentally in my family, my husband then was diagnosed with Multiple Sclerosis, and so once again people came and said, “Well, you really must be wondering this time why God has allowed this to happen.”

    “No, we’re not wondering.”

    And then over the last two years our son has been diagnosed with a degenerative disease, which is not the same disease, and they’re clamoring at the door again! “You must be wondering why.” And my question is, “Why not,” you know? We live in the same world. We’re all going to struggle, but it’s finding the presence and grace of God, who is coming towards us with His grace in every moment of every day, in the middle of that struggle. That is what life is about. And so, it concerns me that the question is asked on behalf of my daughter, or me, or my husband, or my son when we’re not asking it.

    HODGES: So, then what are the better questions, then? Because that’s such a natural question that I think a lot of people feel. That question just emerges, right? So, part of doing this work, I think, is helping people find better questions.

    Who can speak to that? Bill Gaventa?

    BILL GAVENTA: Better questions include, “Jill, I’ve seen you with your daughter at church. Can you tell me about your daughter?”

    JILL HARSHAW: That’s the perfect question Bill. That’s the question that’s so rarely asked. And I don’t think it’s—it’s not asked out of unpleasantness. I think in church I’ve experienced it’s not asked out of fear, because people don’t want to put their foot in it. People don’t want to be insensitive. People don’t want to upset you. And yet, it’s spending many years in churches where that question is never asked, “Tell me about your daughter,” where she is invisible or avoided, that has been the most painful thing.

    So, you asked, “What are the helpful questions?” The helpful questions are the questions that say, “Tell me about her. I want to get to know her. I recognize that she is a member of this community. She might not experience it in the same way as other people, but her essential humanity and the fact that she was loved into being, by God, is what makes her part of this community. So come and get to know her. It’s not easy. She doesn’t talk. You can ask her all the questions in the world. She won’t speak back to you. You can get right up close in her face and she might push you away. But she’s precious, and she’s worth knowing. The time that it will take you to get to know her is God time. It’s time spent with God.

    HODGES: Neil Cudney, you had something to add.

    NEIL CUDNEY: Yes, I wonder if some of that question isn’t answered right in the John 9 text, when Jesus says to his disciples, “Demonstrate the works of God in this person’s life.” And I wonder if that’s one of the questions we need to be asking, regardless of who it is that we are encountering, is “How do we display the works of God in this person’s life?”

    HODGES: Barbara, what are some of the questions you would give people to replace the questions we’ve sort of tried to tamp down?

    BARBARA NEWMAN: I’m often struck by the fact that we, as believers, can ask a completely different set of questions to somebody because we have different eyeglasses. We know for sure that your daughter, Jill, was hand-made by God to fill a specific spot in God’s kingdom. So, to assume that she brings gifts to this body is a really important thing. So, even the first question that I ask you about your daughter: “What makes her smile? What does she enjoy? Does she enjoy music?” You know? What can we learn about her from that perspective of gifts? What gifts does she have, and what does she bring to the body?

    And I think so often parents especially, where there are nonbelievers and they’re told how many degrees below zero, how atypical, how many percentage points below their kids are, and we don’t have to start there. We know for sure that this dear child of God brings gifts to the community, and we will grow because we are part of that same body together.

    HODGES: Katie Steed, I wanted to ask you, how much do you think invisible disability becomes a problem? This is where people that might not be familiar with people with disabilities, or feel uncomfortable with it—instead of asking the question that shouldn’t be asked, they might not ask anything at all. I’m interested in your thoughts on that.

    KATIE STEED: I think that’s a great thing to think about. You know as everyone’s talking, I come from a professional perspective, but I also have a nine-year-old son with autism, and it’s high functioning autism. So sometimes it looks like immaturity or like I didn’t do my job right as a mom, is what I feel like. And when I think about reality, I can tell you a question you don’t ask. I’ve had people say, “Tell me what’s wrong with David.” I’m like, “Hi, that’s not very helpful. I think I know what’s wrong with you, but we’ll keep going.” [laughter] You know? And so, there’s that element of it that there must be something wrong here, because I don’t see Down Syndrome or I don’t see something I can check a box on, and so what do I do?

    Also, I think we often see members that maybe have intense anxiety, and so they want to sit outside of the chapel for church, or maybe they’re not coming to church because of anxiety or because of depression, and we have a tendency to think, “Well, why aren’t they just praying more, or why aren’t they coming?” and we’re not being respectful of the legitimate disability that they’re trying to manage.

    So, how can we better minister to them? How can we love them like God would love them? Instead of judging them. If there’s anything we know, we know we’re not supposed to be judging, and yet, we’re really really good at judging people.

    HODGES: Muno, you had something to add?

    MUNO CHIROVAMAVI: I come from a tradition that does not give high premium to asking questions, but from sharing inter-relationality, and from sharing you don’t really have to ask questions, but spontaneously you just get to know each other. And by that you connect without even distilling things to questions and answers.

    So, it is very interesting that it is the disciples, as was noted, who asks the question, but Jesus simply relates to these and several other people who were in similar or different situations, and through relationships they began to share. It doesn’t have to be him, Jesus asking, or the person asking Jesus, but naturally and spontaneously one day Jesus then comes and says, “What can I do for you?” And it is the person who actually sets the agenda, then, of what they need done to them.

    HODGES: I’m interested to hear from anyone here who has been to this conference multiple times—and Bill you might have an answer to this. Is there something you can think of where you heard from someone from a different tradition that turned a light on for you? That made you see something in a different way that you needed to see? That you might not have gotten there without talking to someone from a different tradition?

    BILL GAVENTA: We have had people from many Christian denominations here, a number of Jewish denominations and perspectives as well, and also several Muslim speakers, Imams and some others, and some people who would consider themselves to be deeply spiritual and religious but are not connected to a faith tradition.

    I think a couple of the Muslim speakers who have been here, have helped me to learn about perspectives in Islam about disability, about their perspective about any kind of human issue is seen as a test in that tradition. But often times, I think we make real judgements about other faith traditions and make the assumption that “they think this because I’ve heard this about something else,” when in fact, that’s not what they think, or there’s a huge depth to that tradition.

    I grew up in Africa as well, and if people heard Africans the wrong way, they’d say, “Oh, all Africans believe witchcraft created people with disabilities,” which is not the case. You know, there are just multiple kinds of traditions and ways of interpreting that. So I think one of the lightbulbs is, “wait a minute, there’s no one single religious answer in any religious tradition about what disability is, or a response to it.”

    HODGES: Katie Steed, you had something to add?

    KATIE STEED: So, I’ve come this conference, I think this is my fourth time that I’ve attended this conference, and I always go back home and tell people of my faith, there is something really powerful about being around a group of people who say, “I get strength from accessing my higher power, and I want all of the people I know to be able to access that.” And yes, we focus on disabilities, but it’s really just a group of core people that are saying, “I want everybody to know this joy that I know, and I want to be able to make a difference.”

    I come back rejuvenated every year. We get it, and I’m excited to talk with these people. Just sitting here right now, I am just loving this conversation. I want to keep re-hearing what we’re talking about. This is powerful. This is so powerful, and there are so many questions that, sometimes you get caught up in what’s happening right here in your own congregation, and then to hear these beautiful insights, we see it’s bigger than us. There’s a strength that’s bigger than us, and we can build each other with that.

    HODGES: And you get to see a lot of diversity at the conference in terms of where people are from, and ability-wise you get to meet a lot of people from a lot of different backgrounds. I think all of those voices—There is a strange feeling of home in a place that seems unfamiliar. At least that’s how I experience it.

    BILL GAVENTA: I would say that one of the things this conference does is to help make us really question what ability means. Because we see, I think you end up feeling like some of the people we would say might be, by usual terms “the less able,” have got abilities that we have come to appreciate and love.

    INCLUSION, ACCESSIBILITY, AND BELONGING IN RELIGIOUS SPACES

    HODGES: To bring things back to something we were discussing a little bit earlier, I would like to explore inclusion a little bit more. To talk about how religious communities can become more inclusive of people with disabilities. Barbara Newman, I know you had some things to say on that.

    BARBARA NEWMAN: Sometimes, I imagine that congregations put up a sign on their door that says “Everyone Welcome, you’ll find a church home here,” you know, “This is your final family,” whatever phrase they may use, and yet, I think that sign is often obscured by all of the other signs we tack up on top of that, in front of our worshipping door, in front of our children’s ministry door, our youth group door, whatever door that might be. I just see these series of signs, “Must be able to read. Must be able to write. Must be able to stand, kneel, or sit upon command. Must be able to pay sustained attention for at least thirty minutes to an auditory presentation. Must be able to read multiple social cues in order to be accepted. Must be able to tolerate a variety of fragrances, sounds, and sights.”

    The list of placards, or signs, that can cover up that “Welcome” sign can be huge, and I think “inclusion” is the effort of the leadership in that church, of every person in that church, to say “We’re going to tear down those signs,” so that the sign that is left says, “Everyone Welcome.” You can find a place where all belong in this place. And I think that takes, again, a pastor who’s willing to perhaps provide some options within that auditory-based message that he or she is giving. It would take a sound person who is willing to regulate and modulate the sound so that it’s not overpowering those that might be ready to cover their ears. It might take an individual who is willing to send some sermon notes ahead of time so that they can be read to that individual on their device as opposed to something that that person needs to hear. So, I think inclusion and finding those places of belonging, it’s the opportunity to say, “Look, we’re going to make that basic sign, ‘All Welcome’,” by coming together as leadership, as a congregation, to say, “This is our communities effort to make sure everyone can find a place of belonging within this congregation.”

    HODGES: Sometimes when those signs start to get removed, an attitude crops up, something along the lines of “Why do we have to be so sensitive about everything? When I was growing up such and such.”

    How do you deal with those types of responses within congregations? Sometimes from leadership, sometimes from fellow congregants, or fellow worshippers. That attitude—“Oh, why do we have to be sensitive about everything all of the sudden?”

    BARBARA NEWMAN: Attitudes are huge, and they’re often one of the biggest signs that are covering up the welcome sign. I’ll be honest about that.

    It’s great to make a plan, but that plan has to truly include everyone in the congregation. It has to be of value to all of those gathered, to say, “It’s important that we represent the body of Christ in it’s fullness here, and so I’m going to do my part in order to allow that to happen.” And I think the best place to turn for ammunition is scripture. Scripture is very clear that we need to acknowledge the gifts and the importance of each person. “The eye can’t say to the hand, ‘I don’t need you,'” and we need to be willing to lay some of those things down, which is also in scripture.

    HODGES: Andy Calder, you had something to add.

    ANDY CALDER: Yes, just in relation to plans and inclusion, some years ago we undertook some research in which we asked leaders and people labeled by disability from four traditions—Jewish, Islamic, Buddhist, and Christian—about their involvement in faith communities. This in Victoria, Australia. And the three principles by which we now do our work and our plans came from that research and from those voices.

    The three principles are that firstly, people said they want to get into the place—so that takes in the worship space, or the social spaces, all the physical dimensions.

    HODGES: Whether the doors open—

    ANDY CALDER: Yeah, and you can get to the loo, as we call the bathrooms.

    The second principle is that they want to be welcomed. So, that takes in such a range of ways in which people are made to feel welcome or not.

    And the third principle is that people want to have a say about their involvement, and that goes to the question of being asked what skills, what contributions, what things would you like to contribute to our community? So there are the three principles by which we’re guided in our annual planning for our Disability Action Plan.

    HODGES: Christopher, please.

    CHRISTOPHER RAJKUMAR: Some of the disability activists in our country ask a question: who includes who? Who includes who? Who are you to include us? So that inclusion has to be seen from the perspective of people with disabilities too. There was an eleven-year-old girl who was challenging us in enough of our meetings. “I don’t want your wheelchairs. I want space.” So, probably, the inclusion which can broadly open up our eyes in terms of thinking of inclusion comes from the perspective of people with the disabilities.

    HODGES: I think that’s crucial. There’s a slogan in disability studies: “Nothing about us without us.” I think a lot of people have heard that. Yeah, Shelly.

    SHELLY CHRISTENSEN: There’s been a really important sea change in language. Inclusion through the years has been the buzzword, and inclusion has come to mean anything in a faith community. Inclusion simply equals people with disabilities. “We have an inclusion program, we have an inclusion service, it’s only for people with disabilities and those who love them, but we have those things.” And that, somehow, makes congregations think they’re off the hook.

    So, inclusion has become one of those things, a check box. And it’s disturbing because it marginalizes people, it takes away their humanity, and it does nothing to benefit the congregation and all those in it.

    So, when I started to realize all of this so much, that’s when I started thinking about “belonging,” and the conversation needs to shift from inclusion to belonging. And why? Because people in congregation-land just don’t get it. They don’t get the idea that people with disabilities and mental health conditions want what everyone else wants, which is to belong, and whatever that means.

    And so, the idea of belonging then, when you speak with congregations and you ask the leadership, you ask the clergy, you ask the members, you ask the students, you ask the governing bodies, “What does it mean to you to belong? Talk about why you’re here. What is so important in your relationship with this congregation, with this community?” Not even bringing God into the picture at this point, but “What is so important to you that you can’t live without? What is it that tells you that you belong?” And once people identify that, then you can start this conversation about the fact that there are so many obstacles for people with disabilities and mental health conditions to belong. And that’s when the lightbulb goes on in people’s heads, and then you can start the actions. You can start eliminating those barriers, the silos, the obstacles, because now it’s not “them and us,” it’s us. And why we all have our own unique ways of belonging in a faith community and contributing and bringing our gifts and sharing and receiving comfort and all those things. Those are all indicators of belonging.

    So, it’s not inclusion so much. It’s belonging.

    HODGES: I think the difference is that inclusion is sort of supplementary. Inclusion is sort of tacked onto something. A truly accessible worship space would be one where everyone can be there and belong together. Not “everyone, oh and then we also do this thing.” Everything can be just as embracing for everyone.

    SHELLY CHRISTENSEN: Yes.

    HODGES: Jill Harshaw, you had something to add.

    JILL HARSHAW: Yeah. What Shelly’s been saying and writing chimes with me so much, especially around this kind of construct of inclusion and belonging. And when I was coming to the summer institute and I’d read your book Shelly, I was thinking about that so much. But I looked at that word “belong,” you know, and you can find in its root that to “belong” is to be longed for. And we already belong because God longs for us. We are the object of his longing. And so, how that relates to me with the issue of inclusion is, inclusion is like something where we hand out and say, “Oh, do come in, we’ll try and make it nice for you.” Actually, these people belong. It’s not our role to include them because God has already given them a place of belonging. And an actual fact, if we’re not living as that place where they and we—and I hate saying “they” and “we,” but that’s what we’re talking about—where everyone belongs because they are longed for by God, then that’s not church at all.

    And so, it’s not about us including them, it’s about how sometimes we need to realize that we’re not who we say we are if other people aren’t there.

    HODGES:  Muno, you had something you wanted to add.

    MUNO CHIROVAMAVI: Yes. From my context of Zimbabwe and African culture, there is a sense in which, in terms of inclusion, we need to find spaces where we go against the grain. Sometimes the people who have been oppressed for a long time or have been marginalized for a long time tend to think that what they are going through is normal. And for them to be able to set the agenda, it becomes extremely difficult.

    I will give you an example. In many situations, people associate parents who have children with disabilities with dabbling in some magic that makes them rich, and then they are assumed or are perceived to be using their children to be able to get where they are. [inaudible]. For example, people believe if you have some body parts of an albino, you are likely to achieve this or that. Now, given such and environment I think even our churches, where people’s whole psyche is informed by African traditional religious mindset, they need somebody who is able to stand up and confront those structures or perceptions that are now seen as commonsensical, and say, “Hey, this is what people think, but this is not how things are.”

    Even successful ministers of the gospel, if you become successful and have a big church and the church does not have conflict, and for some reason there is someone with a mental disability who comes to your church, people will think that’s your charm for success in ministry, as it were! So there is a sense in which we need people who are very revolutionary and who do not wait for people to get where they are, but who will then push back and say, “this is what I think and I’m happy to put my head on the guillotine block and this is what I believe.”

    Who knows? In no time, people will then see—in my culture we have this proverbial saying: “The puppies, the young ones of a dog, they do not see, or they do not open their eyes the same day they were born.” So some will be able to see on the third day, some will be able to see on the seventh day, but the point is that they will all see someday. Thank you.

    ON GIFTS

    HODGES: So, to summarize the things we’ve talked about in terms of increasing the belonging in our congregations. We heard about confronting attitudes—and sometimes that takes courage and you have to confront very deeply rooted attitudes. That happens in every context, whether it be in Africa with, you know in the United States I don’t encounter the witchcraft thing, but I do encounter the idea that someone may have sinned and caused a disability, or that a person is disabled and in order to teach me something, which turns them into a tool and erases their experience. So, confronting attitudes, that’s one thing.

    Secondly, removing barriers and taking down the signs that say, “You’re not welcome here.” And that can be everything from having doors that open for people in wheelchairs or having youth groups that have appropriate activities that can cater to as many different children as possible. So, getting rid of those barriers.

    And then lastly, to listen to people with disabilities, value their voices, value their experiences, and find out how the congregation or how the synagogue, or how the group can do better at accommodating, and helping them feel welcome.

    So, the last thing I wanted to talk about is gifts. The reason I want to talk about gifts is because one of the purposes of the summer seminar here is to focus on the gifts that people with disabilities themselves offer to religious communities, the gifts that people with disabilities offer to theology itself. And these are disabilities—whether they are chronic conditions, whether they’re lifelong disabilities, whether it’s something that comes along with aging, or something that, disability can affect us at any point in our lives. So, I want to talk about the gifts that people with disabilities can offer.

    Jill, I wanted to begin with you because before we started recording, we had an interesting discussion about a caution when we talk about gifts.

    JILL HARSHAW:  Yes, I feel there has been a movement in disability theology, and particularly in intellectual disability theology, which is on a journey, but I fear that at some point we got a little bit stuck around this “gift” issue, in the sense that we began to look for ways to understand people with, particularly with profound intellectual disabilities, as human beings made in the image of God, and as part of that, as people who need to contribute something. And so, we started looking for what they could bring to us. And part of about was about how they reveal things to us about being human—particularly issues of vulnerability, invite us to embrace our own vulnerability, and those kind of things became the mantras around that idea of gift.

    And I felt there was a danger of us objectifying people by basically saying, “Oh, now I found out why you’re worth something, because you’ve taught me something.” And actually, you’re worth something because you are. You are because God made you to be and loved you to be. Whether you never tell me anything, that doesn’t matter, because you still are.

    But one of the examples that comes out of that is that issue of vulnerability, because those of us who are generally able-bodied love to talk about how “my daughter shows me what it’s like to be vulnerable.” Well it is no picknick to be vulnerable, if you’re in my daughters’ position, and idealizing or looking at it through rose-tinted spectacles—if you are, for example, in an institution where you cannot speak for yourself, where there is potential abuse going on and you are defenseless, vulnerability is no bed of roses. And so, I think the danger of it is idealizing the experience of someone because that helps me to embrace my vulnerability. But my vulnerability and my daughters just aren’t the same.

    HODGES: And the other thing people might do that I’ve heard as well is to say, “Aren’t you such a special mother. Isn’t this so wonderful!”

    JILL HARSHAW: Oh, that’s my absolute—The super hero mom, you know? “God only sends them to special people.” You know, “I don’t know how you get the strength to do it.” What someone called “super arrogation,” where suddenly someone who’s just loving their child becomes a hero. Not only does it put pressure on parents—

    One of the things that was least helpful to me in the beginning was when Rebecca was diagnosed with many complex issues, a pastor gave me a book that was written by a woman whose child also had many complex issues, and it was this wonderful spiritual story of triumph in the face of all of this. And all I felt was more burdened. So, we need to be really careful around the language that we use. And yes, we need to be acknowledging and helping people to uncover their gifts, but not to impose a function along with that gift. My daughter is a gift by being Rebecca.

    HODGES: Thank you.

    Devan Stahl, you had something to add to this. Now that we kind of have that caveat in mind, now what we say will hopefully—this is where it gets tricky, is keeping that in mind, while we talk about some of the gifts people with disabilities bring to our communities.

    Devan Stahl, please.

    DEVAN STAHL: I think that was so well articulated Jill. And I think what I was going to say feeds right off of that. All of our lives are a gift. We might bring gifts to the community—I think it’s hard to get out of a market-based economy idea where I bring things and get things and I’m productive and I help in that way. But our lives are gifts. So, we are a gift to ourselves and to one another, because our lives were not created by our self, but by a good God who gives us that life. And so, instead of thinking of the particular gifts that I’m going to enact or get out of you, all of our lives are a gift. And remembering that, the giftedness of that, the promise of that, I think doesn’t try to do away with our differences but recognizes that we share that in common. All of our lives are this gift, and I think that that helps to maybe prevent some of talk that you’ve heard.

    HODGES: Thank you.

    Katie Steed, you had something you wanted to add.

    KATIE STEED: Yes, so two thoughts on that. One, I think something that really frustrates me in this arena is when we make it newsworthy that, “Oh, the football jock at the high school is taking the girl with Down Syndrome to Prom!” And it’s literally news on the news. And I think, why? Why is that any more—He took his friend to Prom? Great! Why does it matter? Why do we want to pat ourselves on the back for these things? And so, it’s kind of a mascot mentality. “I feel good because I took this person with special needs.” You took your friend to a social thing! Great. That’s wonderful.

    And then also, I think another thing I would add with this parenting thing of, “Oh, you’re such a, you know, God only chooses the special moms to get these special children.” I think another big thing that it puts on a mother’s shoulders—that she’s already really good at putting on her shoulders so she doesn’t need anymore—is guilt. And it’s like the highest guilt you can give because it’s God guilt. [laughs] Right? God gave me this, and I’m still failing at it! These are not helpful things.

    We’re all a gift, right? I’ve three children, and to isolate David as anymore important or any more special, or God sent him as if he was more important to come to me than my other two children to come to me, you know, it creates a complexity, it creates guilt, and it creates confusion in a mother that ‘s already exhausted, and trying to just figure out life. [laughs] I think there are a lot better ways we can address that.

    HODGES: Thank you. Topher, did you have something to add?

    TOPHER ENDRESS: I think following in line with what’s just been said is often when we think about gifting and burden with regard to disability, we individualize it so much that we can’t help but be problematic about it. And I think one of the—not “gifts” of disability itself, but gifts of this discourse that we have available to us is that it reminds us that we exist as a people and a society and a community that can’t be divorced into all of these particular, individual bubbles that don’t intersect and don’t interact. But that we all play a role in constructing one another, and that there’s a giftedness to each of our identities and each of our lives. But there is also a giftedness to playing a role in the community itself, knowing that the community would be something radically different if every single person who’s there wasn’t there. If any one of them was gone, it would be a new and different thing.

    And so, for us to be able to say, “Every person who is here in this community, whether they’re contributing or not, just by their presence has changed it. And it’s something different and better because of this.” We don’t have to put a market value on that, and we can’t in fact, and I mean I think that’s a particularly loaded political and social statement to make, which maybe would be a focus of another podcast at a different time. [laughter]

    But there is something beautiful about acknowledging the duality of being an individual, but also not stopping at the edge of your body but letting that space sort of be between and betwixt.

    HODGES: Yeah, to take it back to Genesis again, God created variety, and that variety exists in community. Growing up in the United States I definitely had this hyper-individualistic mentality that “I can pull myself up by my bootstraps” and that “I can be an independent person,” and I think that led me to overlook how deeply woven into community I really was, and still am.

    And one thing that getting to know people with disabilities better and getting to know disabilities studies better has done for me is to plug me into the interdependence that we have. And not in a way that makes someone have a disability for my own benefit, like “God made them that way so our community could be better,” but that’s just how our community is, and the shape that it takes is made up of the people that are in it. So, I appreciate that. Shelly, did you have a thought?

    SHELLY CHRISTENSEN: I do, and this was an epiphany. This was a pivotal moment as my son’s mother. I had a particularly horrible confrontation with the assistant principal in his middle school. My son was fourteen years old. He had become a bar mitzvah the previous year. Our lives in our synagogue were seamless. Jake was just Jake. Just like our other kids were just who they were. And I had a particularly horrible phone call with the assistant principal one day from his public school, and it was so bad. It was so bad. I bullied this man. I was so angry because he called to tell me he was giving Jake “in school suspension” for poking a hole in a concrete wall with a pencil. It was absurd. I just blew. I pulled the law into my phone call and I let this guy just—I bullied him. I got a standing ovation from my colleagues in my office that day too, [laughs] and I was pretty proud until I realized, what did I just do? You know, we have to play this game. This is horrible. Why can’t they just see our son as another student, who maybe needs supports, and P.S., who’s watching him so closely to see that he’s poking holes in concrete walls with anything?

    And that night I went in to say goodnight to Jake and I was still really shaken up and was still so angry, and he was sleeping. And I said, “God, why me? Why my child? Why? Why do we have to go through this?” And I stopped and I looked at Jake again, and I realized, that wasn’t the question. That was not the question. And I realized that God was as angry with all these horrible things that took away Jacob’s humanity, deprived him of the rights of being human. God was just as angry as I was, and I realized at that point that God and I were partners with Jake. With Jake, to teach his teachers, to teach the society, to teach the world that Jake, and other people who live with things that we label, are human like anybody else.

    And that was the most powerful statement, and I felt so reassured to know that God and I were on the same team. And that just changed everything. Changed everything in how I saw things, it changed how I talk about this and write about this now.

    HODGES: Muno, we’re talking here about gifts, would like to hear from you.

    MUNO CHIROVAMAVI: I think the subject of gifts is quite revealing, particularly with regards to those people with unique experiences with disability. There are certain expectations that they have from the society, and particularly from the church. Sometimes people can do certain things sincerely, or with sincerity, without knowing that they are wounding, or fear they’re causing wounds to people who are already wounded. And the reaction, and the response is very traumatic, and traumatizing. It can be on both sides.

    So, there is an extent to which I think we need to be gracious with each other because every other person is a product of their own experiences, limitedness, and some people can be sincere, but they can be sincerely wrong. And if we give room for grace, it will be able to ensure that we can still be angry—which is normal and human—but still leave room for accommodating each other in spite of our weaknesses and strengths.

    HODGES: I think that’s a good reminder. Sometimes these kind of conversations might make people freeze and feel like they don’t want to maybe do anything because they don’t want to do something wrong. I think people in this group here want the opposite of that, with a recognition that there will be some grace needed when people make mistakes or things don’t go as we’d like them to go.

    So, we don’t want people to be afraid and to freeze up. We need to give each other space. I think that’s an important reminder.

    Christopher, please.

    CHRISTOPHER RAJKUMAR: The ableist community talk about the “special gifts.” I personally feel that the ableist community should not spiritualize or romanticize the disability. Disability is a reality. Disability is to be seen as disability and a reality. Not necessarily to romanticize it by saying that there are special gifts and the gifts are to be used and so on. Probably in some cases it might work, in many cases it might not work. Again, let the ableist community not try to pacify, or try to bring a disparity over these things. Let us accept disability as a reality. Let us stand on it.

    HODGES: The tendency is to alleviate my own anxiety by explaining a disability or by putting a person with a disability in a particular box where I can account for them, or I can serve them, or they do something for me. But do I do that with everyone in my life? I really don’t. And so the trick is to learn how to interact with people of all different kinds of abilities, without that extra effort required. You know, just treating them as a fellow human being.

    CHRISTOPHER RAJKUMAR: Exactly.

    HODGES: I appreciate that a lot. We’ll conclude with Andy Calder.

    ANDY CALDER: I really come back to what you were saying before that people are “there by the grace of God,” and in terms of gifts, it is their very presence that is the gift. I think that applies to all of us.

    One of the yard sticks, if you like, that I’ve heard used as a phrase and have used in the report that I referred to earlier in terms of those three principles that people said about being part of a faith community, is the phrase “To belong I need to be missed.” To belong I need to be missed. And for me that speaks volumes for what giftedness is, about whatever it is we bring, we’re all contributing to that sense of belonging, and the love that a community can create around all of us.

    HODGES: Thank you. Thank you very much.

    We were joined by a special panel here at the Summer Institute on Theology and Disability in Holland, Michigan. I appreciate all the panelists who took time out of their schedules to talk about these issues. You can learn a little about each panelist on our website. We have profiles and a photo of each of the guests to help you keep them straight. We appreciate you listening to this episode and we’ll see you next time on the Maxwell Institute Podcast.