What’s Your Ministry? Fully Human: Building Belonging in the Orthodox Church

A Family’s Journey with Presvytera Melanie DiStefano: Disability Ministry, Family Life, and the Call to Inclusion

OYM recently spoke with Presvytera Melanie DiStefano, a writer, retreat leader, and resource developer with the GOARCH Center for Family Care. As the mother of a child with disabilities and the driving force behind the Fully Human Initiative, she has helped bring awareness, resources, and theological reflection to an often-overlooked area of parish life. In our conversation, Presvytera Melanie shared her journey into disability ministry, the challenges families face in worship and community, and her conviction that every person—regardless of ability—reveals something essential about what it means to be fully human in Christ.

OYM: Please tell us a bit about yourself and your history in the Orthodox Church.

Presvytera Melanie: I’m married to Father Joseph DiStefano, and we have one son, Michael Seraphim, who is 21 years old. Michael is medically fragile and has cognitive disabilities. We serve the parish of Saint Nicholas Greek Orthodox Church in Youngstown, Ohio. I also work for the Center for Family Care of the Greek Orthodox Archdiocese, where I lead the On Behalf of All initiative toward creating an accessible Divine Liturgy for children with disabilities.

I grew up Orthodox at Archangel Michael Greek Orthodox Church in Campbell, Ohio, which is where I live again today. Both of my grandmothers were influential, but one especially stood out for her deep faith. She lived her whole life for God, and that left a lasting impression on me. As a child, I loved church, but in my teenage years I drifted. For about ten years, from my late teens into my twenties, I went through the motions of attending church but was far from Christ in heart and in practice.

At the time, I was working as an environmental health and safety engineer after college. As I approached 30, I faced a personal and spiritual crisis — asking myself, Who am I? What is this all about? Am I really living for God? Through confession, returning to the sacramental life, teaching Sunday School, reading the Bible regularly for the first time, and receiving Holy Communion again after a decade, everything shifted. Though I had grown up in the Church, that season was a true conversion experience. It was the first time I knew deeply that Christ is alive, not just a historical figure or someone far away in heaven. That experience changed my path completely.

I felt called to study at Holy Cross School of Theology in Brookline. Those years were some of the best of my life. I didn’t know exactly how I would serve the Church — there weren’t many established roles for laypeople — but I knew I wanted to give my life to Christ and trusted Him to lead. While at Holy Cross, I met my husband, who was a student there as well. We began a relationship after his first year, and it quickly became clear that God was bringing us together. We married the day after I graduated with my Master of Divinity degree in the Chapel at Holy Cross. It was a glorious day.

We stayed there for two more years. During that time, I worked in the Office of Vocation and Ministry, helping to launch initiatives such as the CrossRoad program. Then I became pregnant with Michael. When he was born, we discovered his medical needs were extremely intensive. He spent nearly five months in the NICU, undergoing many surgeries. That period was incredibly trying, but I knew I needed to dedicate myself fully to caring for him.

For the first several years of his life — especially while my husband was serving as an assistant priest at a large parish — our focus was pure survival, keeping Michael alive. It was painful and exhausting, but by God’s grace, he has grown stronger and healthier. Those early years shaped my life as a mother and as a presvytera.

Over time, I worked in small part-time roles when I could — for example, at a Christian preschool and later as a teacher in an Orthodox school — but much of my service was informal, rooted in parish life. I led Bible studies, supported youth programs, and helped wherever I could. As a priest’s wife, there are always opportunities to serve, even if not in official positions. I’ve learned that we serve best when we offer the unique gifts God has given us, trusting Him to use them for the good of the community.

It’s really been a process of trial and error — learning what our family can handle based on our son’s needs and development. After teaching for a few years, we realized it wasn’t sustainable for our situation. Around that time, my former parish priest, Father Alex — the one who had really helped bring me back to the Church years earlier — reached out. He said the Center for Family Care was looking for someone to do remote work: writing and leading retreats. He knew I enjoyed writing, so he asked if I would be interested.

It was such an amazing fit for our life. Working remotely allowed me to continue serving the Church while also meeting the needs of my family. At first, the work focused on creating resources for Orthodox families in general. But as we developed materials, I felt this constant push from God to speak up. Many of the resources we were producing simply wouldn’t work for families like mine. The needs were different. I’m not naturally outspoken, but I felt the Lord nudging me to use my voice. So I did. I proposed that we begin creating resources and a ministry specifically around disability.

That’s how the disability ministry began. I realized I could use both my love of writing and my theological background to explore disability through a theological lens — writing reflections, hosting podcasts, and conducting interviews that asked, What does it mean to be fully human? At the heart of so much mistreatment of people with disabilities is a distorted view of what it means to be human.

We launched our first reflection, “Fully Human,” highlighting four saints as patrons of the ministry: St. John Maximovich of San Francisco, St. Matrona the Blind, St. Sergius of Radonezh (who had a learning disability), and St. Paraskevi (known for eye ailments). When we announced it, the response was overwhelming. Emails poured in from families saying, We’ve been waiting so long for the Church to speak to our needs — how can we help? People with disabilities themselves also reached out, saying, As a caregiver you know one side, but let me share the lived experience of disability.

From that, we formed a steering committee of about twenty people — caregivers, as well as individuals with a wide range of disabilities: autism, blindness, deafness, Tourette’s, and more. The goal has always been to include as many lived experiences as possible so that our resources reflect the real needs of the community.

More recently, our team received a Lilly Grant — the Nurturing Children in Worship and Prayer grant. Initially, the grant application was meant to cover resources for all children. But in one planning meeting (which I briefly got kicked out of due to internet issues!), the team had a surprise for me when I returned. They asked, How would you feel if we wrote the entire grant for children with disabilities? I was stunned, humbled, and deeply grateful.

Now, a year into the grant, we’ve been able to hire people and continue the work of creating truly accessible communities for children with disabilities and their families.

OYM: Could you go into more detail about what the Center for Family Care does, and your specific role in it?

Presvytera Melanie: The Center for Family Care is a department of the Greek Orthodox Archdiocese. Our work focuses on supporting families and marriages. We provide parish retreats on topics related to family life and marriage, and we’ve written books and relationship guides for couples. We also create resources — things like downloadable discussion guides for priests or lay leaders, which can be used in small groups during Lent or around family topics. We produce webinars, articles, books, podcasts — all centered on the life of the family in Christ.

OYM: And what about your specific role? What do you do?

Presvytera Melanie: I was originally hired as a resource developer. The main need at first was for someone to write — creating content for podcasts, webinars, and articles. I was also asked to help lead retreats, since I had some experience in that area and a theological background. The role had a fairly open scope, which gave me the freedom to follow where I felt God was leading. With my boss’s encouragement, the work gradually expanded beyond what I was originally hired to do, and that’s how disability ministry began to take shape.

OYM: Do you recall a specific moment when you realized this was your calling — that disability ministry was something you truly needed to do?

Presvytera Melanie: I don’t think I could point to one exact moment. But I remember during COVID, when we couldn’t meet in person, we had a virtual Archdiocese clergy-laity gathering where people could meet our team and ask questions. Someone asked us what area of work we each felt most strongly about or most passionate about. In the closing comments, I heard myself say, almost without thinking, “For as long as I work in this position, I will speak on behalf of families who have disabilities and special needs.”

When I said it out loud, it was like I was hearing it for the first time myself — and I knew in that moment that this was the path God had set before me. Honestly, I think He had been nudging me for a while, but I was resisting. Eventually, it just became impossible to resist.

OYM: What specific need does your disability ministry address in your Orthodox community — and what do you think is most applicable to the Orthodox community in North America?

Presvytera Melanie: The deepest need I hear, both from people with disabilities and from caregivers, is the need for community in Christ — real connection in their worshipping communities. Too often, there is isolation.

Sometimes that isolation is physical: if a person uses a wheelchair or walker, the church may not be accessible. Bathrooms may not accommodate disabilities, which makes it hard to stay for coffee hour or fellowship afterward. Sometimes it’s communication differences: for example, deaf Orthodox Christians often use American Sign Language, but there are very few interpreters available in our parishes. We don’t even yet have an official ASL translation of the Divine Liturgy, and some of our liturgical terms don’t have easy equivalents in English, let alone in sign language.

Children with developmental disabilities may use picture communication systems or augmentative devices, which could help them follow the Liturgy — but those tools are rarely available. Blind parishioners, too, lack resources that could help them fully participate, such as descriptions of liturgical movements. All of these barriers limit the experience of worship.

But I think the most painful barrier is the misunderstanding — and sometimes even the disrespect — people with disabilities encounter. Too often, others see only the disability, not the person’s abilities or the gifts they bring to the Body of Christ. That creates deep isolation.

As a mother, I’ve felt this personally. When your child is looked at as though they are somehow “alien” because their behavior or communication is different, it’s painful. If your child makes noises instead of using words, it can cause others to feel uncomfortable or even fearful. I can understand it, but it still hurts. It makes coffee hour or parish social life very difficult to navigate.

Sometimes, the similarities between families are actually greater than the differences — but fear, uncertainty, or lack of understanding can keep people apart. That’s why I see the greatest need as addressing the isolation caused by these barriers, so that all families can truly belong and offer their gifts within the Church.

OYM: What are some of the challenges you face within the disability ministry and with your teams?

Presvytera Melanie: There are many challenges. One of the first is that I don’t have a diagnosed disability myself. That means I often find myself speaking on behalf of people with disabilities without having the lived experience personally. My son does, of course, which gives me insight as a mother — but I am always aware of that limitation.

The greatest challenge, though, is indifference. Ignorance is one thing, and I don’t mean “ignorance” in a cruel sense — most people simply don’t know what they don’t know. That can be addressed with awareness and education. But indifference is much harder to face. Sometimes it feels like people don’t consider families with disabilities because they’re a smaller group, “not on the radar.”

For example, some priests assume they don’t have parishioners with disabilities simply because they don’t see them in church. But that assumption isn’t accurate. Polls show that about 20% of Americans have a disability. So if two out of every ten parishioners don’t appear to have one, it’s usually for one of two reasons: either their disability is hidden (like many neurodivergent conditions), or they aren’t coming to church at all because some kind of barrier is keeping them away.

I realize that my experience is different, too, because I’m a presvytera. When my son was young and made noises in church, I was determined to keep coming — no matter the looks or scowls — because I had such a strong conversion experience with the Eucharist. I knew we needed to be there, because Christ is our life. But not everyone has that same starting point. And I’m also aware that people may have been more civil to me because I’m the priest’s wife. Other families aren’t treated that way.

I’ve heard painful stories of parents whose children were scolded or judged harshly, especially if the child didn’t have obvious physical signs of disability. My son has Down syndrome, so his needs were more visible. But for families whose children have autism or ADHD, the challenges aren’t always outwardly noticeable. Behaviors can easily be misunderstood, and the result is scorn instead of compassion. That’s very hard to come back from if your parish environment doesn’t feel welcoming.

There are also practical challenges. For instance, sensory issues can sometimes be addressed quite simply — by setting up a sensory table at coffee hour, so children can engage in their own way, or by providing noise-canceling headphones. But these small tools often aren’t available.

Another challenge is with the clergy themselves. Priests already carry so much on their plates that, when disability needs are brought up, it can feel like “one more thing” to manage. But what’s often overlooked is that accommodations usually help everyone. When churches make spaces more accessible, the entire community benefits.

Finally, there’s the challenge of language. Even the terminology is sensitive. Many disability advocates prefer the word disability, so I use that more often now. But some families are more comfortable with “special needs.” Some groups, like the deaf community, don’t see deafness as a disability at all. People who are blind often prefer simply to be called blind. So it can be tricky to navigate the right language while respecting people’s identities.

OYM: What does a typical day look like for you?

Presvytera Melanie: A typical day starts with me trying to wake up a little earlier than my son so I can have some quiet time. I usually read from a saint’s life and a bit of Holy Scripture. Once my son is up, the morning is filled with taking care of his medical needs and getting him ready for his schooling. A teacher comes into our home a few days a week to work with him for a couple of hours.

Then I shift into my ministry work. I check emails, look over my to-do list, and focus on the goals related to our grant. Much of my day is spent communicating with team members and slowly chipping away at projects — always balancing that with checking on Michael and making sure his needs are met. It’s a constant back-and-forth between caring for him and working.

In the late afternoon, his grandfather picks him up for a couple of hours, which gives me quiet time for scheduled calls, podcasts, or interviews. That’s when I can really focus without interruption. After that, I throw together something for dinner, and we eat as a family.

In the evenings, my husband and I like to make music together — he plays guitar, and I sing. It’s a simple but fun way for us to connect. Then it’s bedtime for Mikey, and before I know it, another day has come to a close.

OYM: At OYM, we minister primarily to young people — especially those just coming out of university and entering their early twenties. Many of them want to find their place in their church communities, but often feel lost, lacking guidance as they face the pressures of the “real world.” We also know they have gifts, passions, and a genuine drive to contribute to the Church. What advice would you give to someone who wants to serve, or even start their own ministry, and use their gifts for the Church?

Presvytera Melanie: That’s a wonderful question. I remember well how it feels to feel lost at that age. The first thing I would say is: let Jesus Christ be your best friend. Truly make Him your closest companion. Speak to Him in prayer, ask Him to open the way for you, to reveal your gifts, and to show you how He wants you to use them.

It’s also important to seek guidance — from a trusted priest, especially in confession. Confession isn’t only about naming our sins; it can also be a time to ask, What can I do to serve God? How do I discern my path? Having a mentor, someone a little further along in life and faith, can be an invaluable guide.

And pray. Pray to the Lord to open the way before you. Sometimes, our deepest wounds become the very places from which the greatest fruit in service can grow. I’ve found in my own life that Christ often uses the most difficult experiences to shape me — not necessarily into a “better” person, but into a humbler one, more able to understand and serve others.

So don’t be afraid if your call to ministry comes out of hardship or pain. That can become a gift too, because where we’ve hurt, we often recognize the needs of others more clearly. Of course, when service flows from joy, that is beautiful and natural — Christ’s joy overflowing from us into the lives of others. But even the hard things can become opportunities to serve Him.

OYM: Do you have any final thoughts you’d like to share with our readers? And for those who want to learn more, where can they find resources from your ministry?

Presvytera Melanie: As for resources, GOARCH hosts several web pages where people can find our work. The Fully Human page includes webinars and podcasts related to disability, and we also have the On Behalf of All page, as well as a page dedicated to autism awareness. For our current initiative, we’re working with twelve pilot parishes, and any tools or resources we create for them will also be shared publicly on the On Behalf of All site so that communities everywhere can make use of them.

As a parting thought — especially for young people — I want to remind you how deeply the Lord loves you and how valuable you are to Him. The world can be confusing and full of negativity, but Christ calls us to a life of love and service. Don’t get sidetracked by the noise or rhetoric; keep your eyes on Him. As you grow closer to Christ, He will speak to your heart and show you the way.