Presvytera Melanie DiStefano: Welcome to Family Matters: Fully Human Edition. This is Melanie DiStefano. Today my guest is Fr. Alexander Goussetis. He serves as the director for the Center for Family Care. He is a graduate of Drexel University in accounting, a Holy Cross Greek Orthodox School of Theology graduate with an MDiv, and Andover-Newton Theological School with a doctor of ministry in psychology and pastoral counseling.

Prior to his appointment to the Center for Family Care, Fr. Alex served more than 20 years as a parish priest, taught world religion classes at the university level, and authored four books on Orthodox life and faith. His pastoral emphasis is making the Orthodox faith relevant for families in their everyday lives and encouraging participation in all facets of our holy tradition. He is married to Presvytera Lisa, and they have three adult children: Julia, Nicholas, and Sophia.

Fr. Alex is the host of the Family Matters podcast series, and graciously shares this platform with me once a month for the Fully Human Edition interviews and reflections surrounding experiences with disabilities. Welcome, Father.

Fr. Alexander Goussetis: Thanks. Great to be with you.

Presv. Melanie: This podcast is geared toward pastors, priests, lay ministers of the Church. Not all priests and ministry leaders have had pastoral training or even real life experiences related to serving people who have disabilities. At times, this adds to further isolation of families if there are members who have a disability. And it also adds unrealistic expectations that such families have for their pastoral guidance. For instance, many times families think the priest will know everything and know how to handle everything, and that's not always the case.

As a priest for almost 30 years, and one who fits the typical experience of the majority of pastors—current American polls estimate that 20% of families experience a disability, so that leaves 80% of us who do not have a familial, first-hand experience of a disability. I'd like to ask Fr. Alex what advice or lessons learned he could share with fellow priests and lay leaders on how to be sensitive to the unique needs of families who do experience disabilities and therefore create a more inclusive church community.

Fr. Alex: Well, I'm certainly not an expert, but I'm happy to share the experiences that I have, and it's been truly a blessing. But in terms of specifically your question, I think the first step for clergy specifically and maybe as an extension the community, but for the clergy the first step is listening. I have to learn the history. I have to learn the dynamics involved with the family that we want to minister to. I'm going to ask them, "Tell me your story." I have to know what the background is and things that I'm not familiar with. I think that clergy and parishes have to first gather info before any decisions or any ministry plans are developed. Then eventually we can continue the conversation: "What is your family experiencing that I can help with, or what the community can help with?" And I'm sure that just listening to the family members will go a long way to bringing about some degree of healing for the families involved, at least as a first step.

And then after we get some of this foundational material, if you will, and dialogue and connection—because that's what this is about, is connection—I think maybe some more specific questions, like: "Is incense a problem? Is spacing or crowding during worship an issue? Can I even shake hands or hug the special needs child or adult?" These sound like really basic questions that really we can post all over our families, but I think even more so for this subgroup because they've been marginalized for so long.

Presv. Melanie: I like what you said about really listening. You can look at two families, for instance, with very similar diagnoses of autism, but we know that autism is a spectrum which manifests in various ways. Some people do not like touch; others don't mind it. Some people have problems with social cues; others can kind of connect in social ways. So knowing what that particular family is experiencing, what that particular individual is experiencing, it is so important not to make generalizations. Just like you would when you're getting to know any person or any family, you would try to see their unique walk through this life.

Fr. Alex: Exactly.

Presv. Melanie: It's great advice. What kind of unique gifts or growth of the wider community have you witnessed in your experience when people with disabilities are involved in parish life?

Fr. Alex: Let me start on a personal level, and then maybe we can expand it to how the community has benefited. I have one family in particular—but there have been many—but the one that really comes to mind is a family that bore a special needs child, a faithful family: attended services regularly, came to confession regularly. And I was just so moved by their parenting and their sacrifice and how they were able to make things work within the family and their specific needs. But what really stands out—and it will stay with me really through the rest of my life—is one thing that the mother said to me. She said, "My child brought me to Christ. My child is bringing me to salvation." What she meant by that is— And this was a person who went to church her life, but it was because of this unique circumstance that this child was bringing the mother closer to Christ as a result of the unconditional love and the sacrifice and the patience and all that was required. These are the virtues we talk about in the Church. She was experiencing these virtues first-hand in a way that was never the case before.

She said very openly, "Listen. Before I had children, before I had this particular special needs child, I lived a very superficial life. I went out and partied, and clothes were important. But all these passing things really had no significance whatsoever." Just the fact that she could say, "This child is bringing me to my salvation" is something I'll never forget, and it's really very humbling. That's more of a personal level, and there are many such experiences, too, that I've been able to witness.

In terms of a community, I think other families come to experience compassion for others, and loving people who may be different from themselves, but, you know, in a way that aren't really different from themselves, because all families have to deal with the issues of parenting and how do we get through this and all of the challenges that parenthood faces. So I think when the community can see the unconditional love that exists within the special needs families and how the parents deal with all of that is really moving.

And just the third part, really quickly, is the theology involved. We say that all people are created in the image of God, and that's a nice theological statement and people's eyes glaze over when we say these kinds of things, but when we extend that to all the community and everybody in the community, including special needs children, adults, I think that's a very demanding, provacative statement. I think it comes to bear when we, in the presence of all of the special needs families that are part of our communities— that that statement still holds truth for special needs children just as much as anybody else in the community. So there's really a theological statement that's made when we are able to embrace and serve special needs families in our communities.

Presv. Melanie: Just to go back to a couple things you said. First is the last point you made about the theology: we do so with baptizing infants, for instance. We don't require that a person can verbally confess Christ in order to be immersed into the full experience of an Orthodox Christian sacramental participation. Our theology is there. What we're working toward is playing out that theology in our lives, in community. So do we actually believe it? Do we treat one another that way, that each of us is created in the image of God, a little christ, if you will, that we honor and value?

Fr. Alex: Infant baptism is a great example, because this is not a mental decision. The person, the personhood is being baptized, and that's what's being welcomed into the Church, and there's no other requirement. I think infant baptism is a great analogy here that applies. Just because a person may or may not be able to verbalize what the faith means to them...

Presv. Melanie: Right. Going back to one of your earlier points, about being aware of each unique situation, when we're talking, we're kind of generalizing and maybe looking at the most intensive needs when we think of a family that is dealing with special needs or disabilities, but there are so many different disabilities, and there are people who, for instance, might have cerebral palsy or need a wheelchair to navigate through this world, but have master's degrees and can teach and can serve as Sunday school teachers. So there's such a variety, so really just honing in, especially for those pastors and lay leaders out there to— Don't lump every single person, just because they have an obvious disability, into one category. Not everyone has cognitive delays or disabilities, and some do, and we all have a different set of gifts and a different set of challenges.

Fr. Alex: Yes.

Presv. Melanie: So, moving on to something that I think we've witnessed in working with the Fully Human ministry, through webinars, through podcasts, through workshops, many times it seems younger priests will come to us. There's a fear about language, there's a fear about how to make connections, not saying the wrong thing, not doing the wrong thing. There's a sensitivity, not wanting to hurt someone, because in this day and age language is so sensitive. Some people prefer "special needs"; some people prefer "disability" as a term; some people prefer being called with their specific diagnoses: autistic or cerebral palsy. There's such a range of preference, and so I think sometimes it kind of stifles us, and we don't know how to even begin a conversation. That's one fear that I see prevalent within ministers in the Church, but I wonder what has been your greatest fear or challenge in ministering to faithful who have disabilities.

Fr. Alex: Well, fear or challenge… Let me phrase it this way. I grew up— I'm a product of Greek immigrants. My whole family was a homogenous group of Greek people. I attended a parish that was predominantly Greek background: again, a homogenous group. That model no longer exists for most of us. We live in a very diverse society, and a greatly diverse community and parish, which is a good thing. That's a great thing! So I think ministry has evolved and changed because the subgroups, if you will, the make-up of the community has changed so drastically. So, quite frankly, I lose sleep just wondering in general: How do I best serve the families of my community that are so diverse and so different and not homogenous the way they were when I was growing up or even when I was a younger priest?

I think it's not only just fear or challenge of serving families with special needs, but just as a priest I think it's even broader than that. I think it's a matter of: How can I as a clergy and we as a community serve the diversity of people that make up our community? I'm not even narrowing it down to the fear and challenge of serving special needs. I think for clergy it's even a much broader stroke because of the great variety of people that make up our communities.

Presv. Melanie: And so what is your— I guess what's your compass then, when you do encounter diversity? What are some tips, maybe, for people to navigate the diversity?

Fr. Alex: Well, that's a good question. I can only speak for myself. I think there are times I try to create common ground so that there's a touchstone for all of us within the community so that we do feel that we are one community. But then it also evolves into ministry and how can I serve the specific subgroups within that community. And trying to juggle both I think is a great challenge. How can I can create unity, so that we all feel like we're part of the same community, but then how can we also expand our ministry so that each of the particular subgroups feel like they are being ministered to—whether it's youth, whether it's elderly, whether it's those who have converted, whether it's special needs, whatever. You can go down the list: singles, divorced people. I mean, it's endless. The ministry list is endless.

But maybe we can talk about ministry as it relates to special needs. Maybe we can move to that. I think for special needs families, clergy might say, "I don't know how best to serve you. I don't know how to serve your family." And I think special needs families need to paint a picture, need to paint a ministry picture. This goes back to the conversation we first had about just telling me your story. So I think rather than just asking to be included in parish life, special needs families need to offer specific suggestions and ministry ideas, and even take leadership in terms of a ministry for special needs. I think by doing so, that can be expanded to not only the parish but to the area, to the community outside of our four walls.

What I mean by that— Let me give you an example from the parish that I serve. There are two mothers in our church. Both have experienced the death of a child because of an opioid overdose, and both boys were in their early 20s. As time went on, these two mothers, these two women, wanted to serve the Church and wanted to use the gifts that they have. We now have a Nar-Anon ministry, which is specifically ministering and catering for families who are impacted by opioids and addictions. Well, who better to serve this ministry than these two women? I can't do it. I can't speak to their experience. So here are two women who took something very tragic and tried to somehow transform, transfigure it in order to serve the community.

I think the special needs families can do something like that, in terms of not only ministering to the people within the walls of the parish but expanding it so that we become a resource for the people around us. So I think there are really endless opportunities for special needs families to develop ministries, to lead them, and to really have an imprint not only on the parish but in the community.

Presv. Melanie: That's a great suggestion. My only thought with that that I would just add is that there are times when caregivers get a little burnt-out and overwhelmed. And to take on another ministry during those seasons of life would be difficult. It's possible. It varies, just like we said before. Some families are very ready to dive into ministry and to go; others are experiencing a little more difficulty in navigating the various needs of the family. I guess I would just add that any family with special needs or disability, yes, has the gifts and capability of leading a ministry, but we would need that extra support of the wider community to make it happen. For instance, there are definitely great examples of spearheading ministries for families, like St. John in Chicago is doing great work, but the wider community is supportive: the priest is supportive; there are other volunteers in the community that make it work, that come and are buddies for people who need a buddy. It takes the whole body to make those things happen and to understand when a family is more in a place of needing support. That also comes back to getting to know each family individually for their needs. Does that make sense?

Fr. Alex: Yeah. It's really— I didn't mean to suggest that the families need to do this on their own. I think it's about partnering. I think it's about working with the parish priest and the community, because I think if ideas are presented and discussed and planned out, the parish would be foolish to ignore the opportunities that special needs families can provide.

Presv. Melanie: Absolutely. Thank you. If a family has approached a priest or lay minister concerning a desire for the family member with a disability to be more involved in parish life, and they are met with resistance to collaborate or even just shut down with their perspective of how their child or their loved one experiences certain things in life—maybe accommodations aren't willing to be made, for receiving Communion, for instance; a lot of times there are sensory issues, and priests don't always understand that a child can't maybe receive the host; they can just receive the blood of Christ; various things exist—what might be the next step? What if you run into resistance, you tried to talk to the priest and there's just not… You're not talking the same language; it's not really going anywhere. What might be the next step to try to continue to create meaningful involvement?

Fr. Alex: I think some of this resistance is simply about ignorance. "I don't know how to help your family. I don't know how to serve your family." Again, I think that goes back to the conversation that needs to be had about what your dynamics are, what your history is: how can we best serve you? I've had many situations in which I would offer the Eucharist after Liturgy, because it was quieter or just less chaotic, and it was just more peaceful for the family. That's no problem at all. I mean, before the clergy consume the Gifts, make that available, or see if that's what a family wants. Now, some families, they want to be mainstream and they want to receive with everybody else: great, no problem. But if there are circumstances that require something like receiving after the Liturgy or only the host, for example, as you noted, these can be so easy, but again it requires conversation, dialogue, a willingness to— But really I feel confident that if the needs are known and the clergy have the conversations with the families, that all of these nuances can be addressed. This is part of ministry. This is part of life, that we're not all just cookie-cutters. There's going to be special needs for everybody.

Presv. Melanie: You would hope! [Laughter] I pray. I pray that that grows, the understanding grows. I think sometimes in our piety, in our love for the sacred of our Church, we sometimes as ministry leaders feel we might be doing a disservice to Christ by making accommodations with sacramental offerings. That's the impression I get from some pastors. So there's a little bit of a sticky point there.

I would just add to that and say: Keep trying to express the whys of what your needs are. And if your priest maybe doesn't hear you, there are avenues you can take, chancellors—not to rat on the priest or to call anyone out, but just even being honest and saying, "Well, Father, if you don't understand this, I know my needs. Can we speak with the chancellor, can we speak with the bishop, and ask for their advice on this situation for my family?" Does that make sense?

Fr. Alex: Well, yes and no. I think that's more— If it really comes to that, that's a pretty sad situation, I think. That would be a pretty sad expression of one's priesthood. We make accommodations all the time. Do we not go to nursing homes and people that are homebound and give them the Communion, the Eucharist? There are accommodations that are made all the time that are not contrary to our faith or our teachings or our practices. I'd like to think that there's enough opportunity for education, for conversation. There are more and more resources just within the ministry that you're doing, a ministry to provide and educate the priests, to say, "This is what's happening. This is what's available. This is what our group is dealing with." I'd like to think and hope that there's enough of that, together with the conversation and partnering, to help make progress with this.

Presv. Melanie: I agree. I would hope— But I have heard real stories about impasses, so that's why I brought up the question.

Fr. Alex: Sure, I'm glad you mentioned that.

Presv. Melanie: I also just will point out—and I don't want to belabor the point, but we are so careful with the host, with the body and blood of Christ, that every single drop is consumed, is burned if it can't be found; you know, the spot where it dropped is burned. So if we believe that he is in every single particle of the body and blood, of the wine and bread that has been sanctified into his body and blood, then we believe that any little drop that someone receives is sufficient. He is in that. I guess I just wanted to point that out for the pastors who may think the person isn't receiving the fullness of the sacrament because it's in a different, slightly unique way that they're receiving it.

Fr. Alex: I see your point.

Presv. Melanie: In the end, we've been asking our guests to just try to offer a few insights about what it means to be fully human. I wonder what your understanding is of what it means to be fully human.

Fr. Alex: I've always been intrigued by that title from the beginning when you suggested it, and I've really grown to love the title given very much. In Scripture, Jesus tells us, "Be perfect as your Father in heaven is perfect." And then Jesus says something similar on the cross. Both are Greek words; in both cases the word teleios or tetelestai is used. But "perfect" in this sense doesn't imply perfection; it doesn't mean never making a mistake. And I think this is always just not translated well or understood well. Tetelestai, teleios, means to be fulfilled, to be complete, to be satisfied, to satisfy. And also in the synaxarion, which is the listing of the saints, martyrs are referred to as having been perfected in the faith. Again, teleios implies fulfilled, complete, fully satisfied.

As relates to Scripture and the synaxarion, when it comes to the term "fully human," it requires the presence of the Holy Spirit, to be open to the presence of the Holy Spirit, allowing ourselves to be vessels of the Holy Spirit. So the title that you've given to this ministry I think fits so well, because special needs families are open to the Holy Spirit in a way that completes us, that fulfills us, and really that is the goal for everyone: is to be perfected in the faith through the openness to the Holy Spirit. And I think having a title like "Fully Human" makes it clear that: "Hey, you know what? We're also in that same path. We're also in that same— We also strive for that same destination, to be fully perfected in the faith, to be fulfilled, to be complete, to be satisfied in the Holy Spirit.

I think it's a great title and a great message, not only for people within special needs communities, but really to all of us within the body of faith.

Presv. Melanie: Thank you, Father. Thank you for your lessons learned and suggestions.

Fr. Alex: Thanks for inviting me.