Presvytera Melanie DiStefano: Welcome to Family Matters: Fully Human edition. My name is Presvytera Melanie DiStefano, and my guest today is Sarah Riccardi-Swartz.

Sarah Riccardi-Swartz is a post-doctoral fellow in the Luce-funded Recovering Truth: Religion, Journalism, and Democracy in a Post-Truth Era project in the Center for the Study of Religion and Conflict at Arizona State University. An anthropologist, scholar of American religion, and trained documentary filmmaker, she specializes in social politics, media, and Orthodox Christianity. Her teaching, research, and publications have won numerous awards, and she currently has a book coming out with Fordham University Press in the spring of 2022.

Sarah converted to Orthodox Christianity in 2011, during her first fieldwork project. She’s married to the wonderful Subdeacon John and has an autistic daughter named Clementine. Sarah is passionate about disability rights and advocacy and has previously served as a parent liaison for the special education board in Jersey City, New Jersey. Welcome, Sarah.

Sarah Riccardi-Swartz, Ph.D.: Thank you so much for having me on your podcast, Presvytera.

Presv. Melanie: It’s great to have you here, and I’m looking forward to getting to know you and your family. How did you become interested in disability rights?

Dr. Riccardi-Swartz: Well, I had the tremendous good fortune, when I was an undergrad at Missouri State University, to work with an amazing disability rights advocate and scholar, Rabbi Dr. Julia Watts Belser, and her work really impacted not only how I think about my own work, which is in religious studies and theology, but how I think about disability studies and disability rights. This was all through a sort of intellectual lens at that point. I became really aware of the fact that, in my own work in religious studies, I needed to think about disability through intersectional methods and theories. And of course, this isn’t only about disabilities; it’s also about class, it’s also about gender and race and education—because we’re human, and we live a human experience.

So that was really my foray into disability studies and into disability rights. And then I went into doctoral work at NYU, at New York University. And one of my committee members was the incredible Faye Ginsburg, who is a wonderful anthropologist, a former MacArthur fellow, and one of the foremost advocates in disability rights. She was the person who helped me take my critical and my intellectual engagement with disability studies and link it to that practical work, to that advocacy, to that community engagement, through her own engagement. That was just such a helpful… She was such a helpful guide and model for me, because it was at this point that I actually began to navigate that sort of practical world of disability rights as, at the same time, I was navigating my daughter’s autism diagnosis.

Presv. Melanie: Oh wow, so it was happening at the same time.

Dr. Riccardi-Swartz: Yeah.

Presv. Melanie: So how did things start to change? Obviously, you had a different interest when your daughter started to show signs of having autism.

Dr. Riccardi-Swartz: Yeah, I thik there [were] probably two ways in which my views on or really my engagement with disability rights changed after having my daughter. I think first would be in terms of medical access and diagnosis. So I had my daughter, whom I like to call my unexpected joy, at the beginning of my third semester in my doctoral work. It was really evident to me from just even the first few moments of greeting her that she was just very unique. I suspected very early on that she was probably autistic. At that point we were living in New Jersey, and we had excellent access to early intervention through the state. She was diagnosed early on with sensory processing disorder, but most of the health care team really wanted us to wait until three years old for a formal medical diagnosis of autism.

And I did wait, but I realized during that process and then later that the ways in which parents often have to wait for or stress over diagnoses for disability, it really needs to change. It’s a very frustrating, laborious process that creates more social chaos within the family, and I think it creates more problems and impediments for care in later years. So that’s something I focused on, talking with parents, mentoring parents, who think, “Is my child autistic? Does my child have a learning disability?” and parents who are frustrated, because they’ve been told to wait for a diagnosis, or they’re on these really long lists for a diagnostic center to run tests, etc. I’ve told them, “You don’t need to wait until they’re three years old. Seek out your local advocacy groups. Request second opinions. Trust yourself. Demand what you need. Fight for what you need.” I think sometimes we’re just so used to accepting answers and saying, “Okay, sure, that’s what we need to do,” that we don’t say, “No, there’s another way.” We can challenge what people have said to us, even if it’s saying, “I disagree,” with a diagnosis. We can challenge that, and that’s okay. That’s our right as people to do that.

I think the second way my relationship changed with disability rights was actually returning to that intellectual sphere. So for the first I, would say three to four years of my daughter’s life, my engagement with disability rights was about access—about medical institutions, about insurance, which is a whole story unto itself—with personal issues that you sort of need to fight for, as the parent of a kid with autism. As those issues sort of subsided, as we fell into this rhythm of life, with therapies and lots of Daniel Tiger… [Laughter] Which I hope resonates with our listeners! Loads of Daniel Tiger!

Presv. Melanie: For us it’s Baby Einstein and Thomas the Train.

Dr. Riccardi-Swartz: Oh, yes! I wish! I wish we had the luxury of branching out. [Laughter] It’s been six years of Daniel Tiger.

Presv. Melanie: That’s cute.

Dr. Riccardi-Swartz: Really just educating ourselves about being… about raising a proud autistic person. I realized that one of the issues I needed to address in our lives was the Church. This for me was a two-part issue. One is, again, that need for practical education and awareness so that Clementine, as an autistic person, could live a life fully in the Church at any age. And then second was that that practical part for me could only come if our theologies understand the needs of disabled people and are inclusive. So when I realized that I needed this for Clementine, on a practical, familial level, I realized that we all need this. We all need that inclusivity. We need the Church to be what it was meant to be: our home.

So then that realization prompted me to start thinking and writing more about the intersection of theology and anthropology with a focus on the disability in the body.

Presv. Melanie: Wow. So I’m thinking about a lot of what you said, and a lot of it is intellectual. I guess as a mom I’m wondering also how you turned to your faith in times of maybe emotional challenges through this process.

Dr. Riccardi-Swartz: You know, it’s… It’s very challenging. It’s very challenging to see someone whom you love and know that there is a place for them in the faith that you love, and sometimes feeling like that faith doesn’t have all the answers for you, at the same time. I think so often we assume that if we pray and we seek God, all the answers will come to us. [Laughter] And sometimes they don’t, and there is beauty in that, in the lack of answers sometimes, because it shows us what we as people, as members of the body of Christ, need to do, to help those answers come to fruition.

So I think one of the things that my faith allowed me to have was that… sort of that angst, actually, that worrying—and I worry; I worry constantly—about the future. I think anybody who has disabled members of their family does.

Presv. Melanie: Right. We all have concerns for our children’s future. There’s no question.

Dr. Riccardi-Swartz: Yeah, and I think that allowed me to realize that part of being a Christian is, yes, giving it to God, if you want to say it that way, but also recognizing that we all have a role to play in the uplifting and inclusion of each other, and that’s a practice.

Presv. Melanie: And it doesn’t always get played out the way we would hope to see it played out.

Dr. Riccardi-Swartz: Absolutely.

Presv. Melanie: So we’re fallen people, and we fall short of the measure of Christ, but we’re working toward it, and talking about it helps.

Dr. Riccardi-Swartz: Yes!

Presv. Melanie: I think… I guess along those lines, you talked about wanting her to have a practical experience of inclusivity in the Church. What is it like raising a severely autistic daughter in the Church?

Dr. Riccardi-Swartz: It is definitely challenging. It is a struggle in various registers. So you have on the one hand, a struggle working as a family to find the best means of explaining and transmitting the faith. How do we get her to cross herself? How do we get her to cross her arms for Communion? How is that best going to work for her? So that’s the internal familial struggle.

Then you have the external familial struggle, the social struggles, as it were. We know that inclusion is what we strive for, and most people around us realize that in our parishes, but there are always those folks who will stare or they will question. There’s always that—bless their hearts—there’s always that older woman who is staring you down while your child is stimming or having a meltdown or scripting Daniel Tiger very loudly in church—and it’s really hard, I’ll be honest. It’s still a struggle for me not to say something uncharitable, because I am human. But I recognize, and I have my tremendously patient and very Christ-like husband to thank for this, that not saying something, just being in the church, is often the bigger witness.

Like we said, I do worry. I worry about the future. I worry about what will happen if she’s an adult without us. Will she have access to transportation for church? Will she be included in activities? Will she be understood and understand? So those challenges, those internal, external, social, cultural, physical, medical—they’re all there, and we as a family have to meet those challenges, individually and as a collective, as a parish collective. And we also have to be catalysts for the transfiguration of our parishes so that we realize that the heart of the Gospel is really radically inclusive love.

So for me, raising her in the Church is both a tremendous blessing, but it’s also an exceptionally hard challenge. It’s a daily struggle; it’s a daily practice, to say… Even if you just put aside having an autistic child, and you’re just a person unto yourself, a neurotypical person: Being an Orthodox Christian is a challenge, and it’s a daily commitment to that practice, because it’s not just faith; it’s also practice.

Presv. Melanie: It’s a way of life.

Dr. Riccardi-Swartz: Yes, absolutely! So for me I think it’s raised to the tenth level now. [Laughter] And I have someone who is dependent on me, not only to show the icon of Christ, but also to help people realize that she is also the icon of Christ.

Presv. Melanie: Amen. I find that as well. And every person is different, but as a mom, I’m not someone who’s typically… It doesn’t come natural for me to advocate, but for my child, that has brought something out in me; his experience has brought that voice out. God knows what we need and God knows what our children need, and it’s a matter of us stepping up to those needs as well. Like you said, sometimes just our presence in a community speaks very loudly. We often don’t have to say much; we just have to be there. In time, those things get worked out, but there are times… It’s discerning when and how to speak the truth in love that is all… Like you said, we are humans, so we are sometimes wanting to fight for our child, and I would say that’s a very maternal… That’s a maternal instinct, right? To protect our child.

Dr. Riccardi-Swartz: Yes, absolutely.

Presv. Melanie: So along the lines of you expressed wanting her to feel understood and to understand and be in church, I saw an example of your church school IEP that you created for Clementine, and I just thought it was really, really awesome. Would you talk a little bit about that?

Dr. Riccardi-Swartz: Sure, and if you’d like I can send you a blank copy so that you can share it with your listeners if it’s helpful.

Presv. Melanie: Awesome, yes.

Dr. Riccardi-Swartz: I call this an IEP. I found a template for it years ago, and I don’t remember the blog. It’s more of a get-to-know-me page, and I typically use it for people who are going to be a substantial part of my daughter’s life: therapists, teachers, bus drivers. And I adapt it for different people and different needs. But I think it’s also beneficial for the parish setting: for priests who might have children who are altar servers, for teachers, those running a coffee hour, if you have people who need feeding supports or who have allergies, I think they’re really helpful tools for any inclusion. They’re just these one sheets: one sheet of information. Usually they have a picture on them of a person, and they’ll list strengths, limitations, favorite things, things we’re working on as a family, goals. In this church IEP, I listed goals I wanted for Clementine as a Christian, and goals for her inclusion at the parish. I wasn’t going to originally give that to the church school leader. I was kind of nervous before I met the church school leader. I didn’t know her very well; we had just moved to this parish, and I was really concerned that there wouldn’t be an inclusive space for Clementine. So she said, “Let’s meet and let’s have a chat.” I was so anxious. My anxiety level was—whoo!—it was through the roof! [Laughter]

But she was loving, and she met me with this openness and just this servant’s heart, and it was beautiful. I said, “You know, I have this page of information I usually give to therapists and bus drivers. Would you like to see it?” She said, “Absolutely. Anything we can do to create a program in place to help Clementine be included is something that we want to do.” So I emailed it to her, and she’s like: This is so great, and we’re going to use this to help facilitate an inclusive space for her. It just eased my mother’s heart. That one page… She asked for the ability to share it with other teachers who will be teaching this year, and I said, “Absolutely.” It made me feel so much less anxious about having her in a classroom where I knew she would be safe and I knew she would be loved, but I didn’t know how much she would be included. I felt immediately that this was going to be a space where she was included, she was treated with the love of Christ, and there was the ability for her to be who she was.

Presv. Melanie: That’s beautiful. I love the way the church school teacher met with you privately and addressed concerns in a private conversation, too. What I love about this is it’s very visually appealling, and it’s simply laid out. It’s a one-pager, like you said. When we think of an IEP as parents, we know that’s like this big pamphlet when you do it for the school system. So that’s not what this is; it’s really a nice visual and simply laid out, so that anyone who’s working with your children can get to know them quickly and just have some main things that they can go to, even you want to put what comforts them in a stressful situation, that kind of thing.

Dr. Riccardi-Swartz: Right, absolutely.

Presv. Melanie: So, yeah, I would appreciate the blank. That would be wonderful to share with our listeners. I guess along those lines you said the IEP mentioned strengths and challenges. Tell us a little bit about your daughter. What are some of her strengths?

Dr. Riccardi-Swartz: She’s tremendously smart. She is so smart, I think too smart for her own good sometimes! [Laughter] She’s very inquisitive and just has an open, loving spirit. She’s still what they consider non-verbal; although her expressive language is limited, but her receptive language is super strong. Her strengths would be she has learned to say the Our Father, which is hilarious to hear her say it, because she… We say it before she eats, and she wants to get to her food. [Laughter] So she says it really fast, so it becomes quite slurred, and we’re missing some parts of it, but the end is so triumphant. The “Amen” at the end, it just resounds throughout the house! [Laughter]

Presv. Melanie: That’s awesome.

Dr. Riccardi-Swartz: Now that we got that down… It took us, I would probably say, six months to get it down, where she does know it, word for word, even if there are sometimes a few words that drop out. But now we’re adding a little prayer at the end of that. So now we’ll say, “Most-holy Theotokos, save us,” at the end, and that’s… We’re still working on it. We’ve got a few words of that one down so far.

Presv. Melanie: That’s so sweet.

Dr. Riccardi-Swartz: So her strengths are that she, I think, has a desire to pray—you can see it—and a desire to learn the prayers of the Church. She loves icons and loves being in church and loves Communion, loves taking Communion—can’t wait for it. [Laughter]

Presv. Melanie: Wow! How sweet.

Dr. Riccardi-Swartz: I think her limitations are that she still doesn’t understand fully how to interact with people. She still has that piece missing. So she might be overly friendly and sit down right next to you and not know that you want your personal space. That’s very hard for her. She also might decide in the middle of the anaphora to sing a song from Daniel Tiger, quite loudly. [Laughter] So, you know, that’s hard. It’s like: “Shh. This is a very special moment in the service,” and here’s “Bright, Bright Sunshine! You’re growing, flowers, birdies, too.” You just have to sort of like… Well… Either take it as a prayer or just ignore it, folks, because that’s all we can do at this point.

Presv. Melanie: I know. I absolutely believe it’s a prayer. I believe that those interjections are definitely the pure child’s heart adding their prayer to everything. Sometimes my son will take to getting excited and throwing his beads across the room in the middle of the anaphora, so you just don’t know what causes that excitement, and they might be seeing something that our eyes can’t see, and who knows? They’re joining in the prayer.

Dr. Riccardi-Swartz: I agree, yeah.

Presv. Melanie: So beautiful. What more do you think we can do in the Church to promote inclusion and to advocate for disabled Orthodox Christians?

Dr. Riccardi-Swartz: At first, I have to say that’s a really massive question, but I think if there’s one take-away for me, it’s that we need to listen to disabled people and/or their guardians. Now, it might be easy for us to listen to, say, an autistic adult who has minimal needs, and they say to a parish, “I have these particular accommodations,” but it’s a whole ‘nother thing to, as a parish, have a family who has a member with very high needs and large amounts of accommodations, like an adult changing station or a family bathroom or elevator access. So I think before we can promote inclusion and advocate for disabled Orthodox Christians as a collective, we have to be able to practice that, that advocacy, in our individual parishes.

I have been to many parishes where folks are carried up and down stairs in their wheelchairs, because stairs were the only option. Now, to me, that’s not only unsafe, that’s a lawsuit waiting to happen! [Laughter] And, sadly, we have to remember that houses of worship are exempt from being ADA compliant. Now, as astoundingly awful and ableist that that is, I know that as Christians we can do better and we need to do better, and if that means reallocating funds for icons to a sensory room or to an elevator, then that’s what we need to do. We have the capacity to transform our communities in positive ways, but we really have to start local. We have to be mindful that there are hidden disabilities. We have to think about accommodating people in parish halls who have food allergies. And, really, one of the big take-aways for me is we have to ask rather than assuming people’s limitations.

I have to tell you this story, because I think about this probably every day now. It was Pascha of this year, and I… There’s a man named James who is our… He’s the greeter at the door, and my daughter just thinks he’s lovely, and he thinks my daughter is lovely. He’s never… They have very short, minimal interactions, but he’s so incredibly kind. At Pascha, he came up to me, and he said, “Father’s going to light the holy fire. He’s going to give it to the subdeacons, and then they’re going to ask some of the little girls up to take the holy fire and distribute it out to people, to the parishioners.” And he said, “Can Clementine be one of the girls who’s at the front?”

And it was just like… I couldn’t even breathe; it took my breath away. I said, “Well, I don’t think she’s there at this moment, but thank you so much for asking. I really appreciate it.” It was just such a moment of profound inclusion that it totally transformed… I liked the new parish that we were at, but it totally transformed the whole parish for me, that one moment, because I saw in that the beauty of what it means to just be a Christian, to actually be inclusive, to not question but to just ask, “Can she be a part?” rather than assuming she might not be able to.

So that for me, that’s a start. And anything we do that promotes that inclusion is a start. I obviously… Look, I’m an anthropologist. I don’t have all the answers. But I think that any practice we do must begin with starting to understand each other at that local level, and particularly to understand the lived experiences of disability at our own parish.

Presv. Melanie: I think it’s… Actually, the way you describe that story is really important, because those things can be so powerful, as you expressed, so powerful in the way you saw your new community. You felt home because somebody made you, made your whole family feel a part of the family. So those simple invitations mean a lot, more than people realize, and there’s nothing wrong with asking and inviting. As the mom, you didn’t feel she was ready, but just the fact that someone asked was so powerful. That’s a beautiful example to share. Thank you for that.

So, being that you have studied anthropology, how has that informed your way of looking at inclusion theologically?

Dr. Riccardi-Swartz: Well, I’ve started… This is my next project, thinking about the intersection of anthropology and theology, specifically looking at disability. I really think we need to deepen our theological conceptions of humanness and personhood and being. I really believe as an anthropologist we can do that, through sort of a critical engagement of theories of disability.

One of the biggest failures for Orthodox Christianity, in my opinion, in Orthodox theology specifically, is the lack of consideration given to the lived complexities of disability. If we think… I think it was the recent CDC stats that said that 23% of all Americans have disabilities, and that’s one in four. I think as Orthodox Christians, we need an embodied theology that addresses what it means to be disabled. The Church can certainly call for members to treat each other iconographically, which we do—we’re called to treat everyone as the image of Christ—but if we don’t have a theology that has space for everyone, then how can we expect a manifested and really lived-out application of access and inclusion? Because, as you and I have said during this podcast, inclusion is a practice, and it’s a practice that has to be supported by theology if it’s going to be activated at that parish level. That’s where I think an anthropology of disability could provide intervention.

The lifeblood of anthropology is talking to people, and it’s being attentive to communication within particular communities. So when disabled people are speaking or signing or communicating, we need to acknowledge that. We need to, with permission, use those reflections, those stories that they offer us, to build a better and a more inclusive theology of the body, of the person, of the community. And as I mentioned to you recently in an email exchange, I’m writing this paper to give later this month at the European Academy of Religion, and one of the things I ask in this paper that I’m writing is how we can use ethnographic stories from disabled people to move Orthodox theology beyond the language of iconicity to the language of an image of a broken and disabled Christ, and how might we use that image of Christ’s broken body to embrace a more substantial, practical application in our communities of inclusion. I think my big, overarching question, as I begin to think about the theological visions of inclusion, is: How can we use our theology to understand and really to embrace disability as fully human, as the normal image of the divine?

Presv. Melanie: Many of our listeners will probably be trying to figure out everything you just said. [Laughter] You’re really smart, Sarah, so what I’m going to try to do is, with my limited understanding, just go back to what I got out of what you expressed. Correct me if I misunderstood. Theology has practical implications, so what we believe is what we act on, and so if we… Whether the Church has a certain theology but we sometimes misunderstand it and embrace something that isn’t the Church’s theology, and then we act accordingly… So to be more expressive and intentional about what we believe about disability within the Church can help us then act more in accordance with God’s will. Is that what you were trying to say?

Dr. Riccardi-Swartz: Yeah, I think so. So often our theologies about disability—and this is not just in Orthodox circles; this is often throughout Christianity—are often about healing. We often come across language about sin, a lot of times about sympathy or pity. My question is like: Why can’t we just resolutely embrace disability as fully human? Why can’t our theology say, “Hey, disability is fully human, and it’s normal, and it’s acceptable, and it’s wonderful, and we’re all created in God’s image.”

Presv. Melanie: And that will be an issue to cause a lot of bristling, because to think of our God, Jesus Christ, the Son of God, as being a broken human being is difficult for some…

Dr. Riccardi-Swartz: It gets a lot of pushback.

Presv. Melanie: And not broken in the sense of damaged like in a negative way, but in a way that he became vulnerable for us and had a very, at times, painful human experience, with challenges all along the way, not just at the cross. So, yes, that is… I think that probably is the crux of the matter: getting to what we believe about Jesus Christ as a fully human being is really critical as to how we see one another as human beings.

Thank you so much. It’s been a joy to have you, and I pray for you and Subdeacon John and Clementine, and that she has a blessed new church school year as well.

Dr. Riccardi-Swartz: Thank you so much for having me, and thank you for sharing your stories with me as well.

Presv. Melanie: Thanks, Sarah. God bless.