Disability — Podcast — Tracey C. Jones

Even as we’re progressing as a society, there are still societal stigmas that need to be broken. Our guest in this episode took leadership in fighting the stigma attached to people with disability. Sylvia K. Kalyebara is the founder of Stars Ministries Uganda, where she serves alongside families taking care of people with disabilities, especially children. Here, she sits down with Dr. Tracey Jones to share how she found her mission and started her ministry and how she continues to share the word of God to help show love and encouragement. Join Sylvia as she tells us the challenges she faced as a leader and how she deals with them and continues to inspire.

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Sylvia K. Kalyebara - Leaders Of Leadership

I cannot be more excited because my guest is very special. This is her first-ever show. She's coming directly from you all the way from Uganda. She’s a beautiful sister in Christ that I met a few years ago because I was a cohort with her husband, Nicholas Kalyebara, at Lancaster Bible College in our doctoral program. They were out for where he got to walk the stage and a few years ago, I got to meet Nicholas's fabulous wife, Sylvia. Sylvia, welcome.

Thank you, Tracey.

Sylvia is a wife, a mother of three, and an unbelievable leader. She's also going to share with you about her Stars Ministry in Uganda, where she takes in and cares for disabled children. You're going to be so blessed by hearing what she has seen in her heart and is doing for that. Sylvia, it's great to see you again.

Thank you, Tracey. It's good to see you too.

Thank you, sister. Let's get right into it. The folks are anxious to learn about your perspective on leadership. My father gave a speech many decades ago called The Price of Leadership. We have it in a little booklet form if you want to check it out on our website, Tremendous Leadership. He said, "If you're going to be a leader, you're going to have to pay a price like anything in life."

The first price he said that you're going to have to encounter and pay as a leader is loneliness. We've all heard that it's lonely at the top. As with all leaders, even Jesus, the ultimate leader, encountered a season of loneliness. Can you unpack for us what loneliness looks like for you as a leader and maybe a time in your life where you encountered it and maybe some words of advisement for our leaders that are reading?

Thank you, Tracey. Loneliness in leadership. I have been serving the Stars for years now. It's a unique ministry. In our Ugandan context, there are no ministries that are for children who have disabilities, especially in the church. That in itself is so lonely because I don't have people that I would share the challenges with that I am finding in the community.

The people that I learned from are from the ministry in America. It's in a different context. The context here has its own challenges. We deal with things like stigma for children or even just the families that have people with disabilities, which causes loneliness. When you need to talk to someone, need to be encouraged, and let out what you are feeling in your heart at that moment, there is no one you can talk to. You feel no one is going to understand what you are going through. That's one of the moments of loneliness I go through as I lead a ministry for children with disabilities.

I love that you brought that up because, for the readers in countries where there are assets and resources, either through the government, church, or nonprofits, to help this, you truly encounter loneliness that is different. Sometimes we feel lonely because we're the only ones with this idea, but you are lonely in carrying out the work God has laid on your heart. I know you come to the states and gather support, but how else do you get through that time of loneliness?

In dealing with loneliness, use opportunities to talk to anyone that comes in contact with you.

I get through that time of loneliness through prayer and talking to my husband. I do talk to my husband quite a lot. I also use opportunities to talk to anyone that comes in contact with me. My staff will tell you that I talk about what I do quite often. My husband, at one time, mentioned, "Sometimes I also have things I need to tell you. You keep telling me about Stars Ministry all the time. I also need to be listened to because I am lonely. I need to hear what other people have to say. I need to hear their advice.” It just comes out. I keep talking about it to get out of it.

I love that you're saying that because for the other readers out there that may be in resource constraints area, this is not a dig or anything, but in Uganda, what it is with what you're doing and how you're the first at this? We think about children with disabilities and that's such a rich area in the United States where there are so many telethons, drives, ministries, and stuff like that. There is so much support. Can you set the context? You've told me about it and even I was like, "I did not realize that you were so alone in that thing for now." Everybody starts out alone, but you are a cutting edge and how you approach the whole care and ministry to disabled children.

I'm going to tell a story of how this ministry journey started. In 2008, I got an opportunity to be with my husband in the States while he was doing school. He was doing his Master's. He got his Billy Graham Scholarship in Wheaton, Illinois. While he was doing his Master’s, I joined a church, the Wheaton College Church. It had a ministry and the ministry is still there. They have a ministry for people with disabilities and that touched my heart.

I saw how we saved them, how we visited their homes, and how we sang and taught them the word of God. That didn’t leave me and it led me to think, “What is the church doing in Uganda? I have never seen children or even people being ministered to in such a way. Does that mean we don’t have people that have disabilities?”

When we came back to Uganda, that was one thing that was on my heart to do, to look out for them. When the time was right, I talked to my pastor. At first, there were some challenges of, “No, we can’t do this. This is very expensive,” but then God moved us to another community where the pastor of the church that we went to allowed me to start a ministry for people with disabilities.

How I started out is shade in the church congregation. In the congregation, we found that two people had children that had disabilities. Due to this stigma and the shame that is attached to having someone with a disability, people don't easily come out to say, "I have a child that needs special care." In our community, it's looked at as you are cursed or someone has bewitched you, or you are a wronged person. That's why you have such a child.

The families carry the shame of having a child with a disability. My goal was to reach out to these families and teach them the word of God. Show love, show encouragement, and get encouragement through the word of God because when I was in Wheaton, as we served the special needs children there, I got to know that having a disability is not a free ticket to heaven. We don't pity them or keep them away but bring them out. Share the word of God with them, and encourage them because the soul in them is there. It doesn't matter whether someone can't talk back to you. Inside of them is a soul that can be nurtured to grow, love God, and accept him.

When I came back, that was my desire. That's what I wanted to do. When I started to do it, I realized that the need was bigger than I thought because there are no places and schools that accept them. Most homes have no cars, so accessibility is very hard, especially for the parents that live in the slum areas. They have no access.

You can imagine a child that has cerebral palsy. They can't move, but they are alive. They are human beings. They need to live a life, but because of the need in the community and the shame around having a disabled child, they tend to hide out the children. They lock them in the house or tie them on a chair as other siblings go to school and the parents go to work until the family returns in the evening. That's when the child will have a meal and get cleaned up because they need to ease themselves as they sit there.

All that is the burden God put on my heart as I reached out to share the gospel, but I realized that the need was bigger. I ended up going into physiotherapy and speech therapy and having a place where we can meet and get all the needs met. The challenge is big here in Uganda. At the center where we are at, because we now have a center, we started out with two, but now we have 48 children that we serve, they are flourishing. They are enjoying themselves. Some are learning. Those who can are being taught how to walk. Those who need to learn self-care are being taught self-care. It's been a journey.

You went to the kids that were alone and ministered to their loneliness because they were the outcast. As you said, we're not talking anybody down. You do what you can do with the resources that you have. You saw that they were alone and then you came in. I love the loneliness aspect but the weariness. Here you are on the cutting edge. You're growing. You went from 2 to 48 and went to all these other schools. How do you deal with weariness? How do you stay at your top physical form? You want to help everybody, but we're physical beings.

For weariness, I get a day off. I now have a team of sixteen staff. Those ones help because we have divided the work and given people different assignments. I have an administrative assistant. That helps me to take a break and have time to reflect, pray, think and to rejuvenate. That gives me a time of rest. I also get out of weariness through prayer because sometimes it's overwhelming to see all these needs.

I get to a time of God of, "Why did you choose me to do this?" The need is big. I see the need and there are no resources enough to meet the need and it gets overwhelming. As you said, I get weary. Sometimes I talk to people, but sometimes it becomes a heavy burden on my hands. Still, I take it back to God in prayer and that's where I find refreshment.

I love that you have a Sabbath and a team there to serve you because we can't do it on our own. The next thing my dad talked about was abandonment. That is staying focused. I know when you talked to me, when you started this ministry, all these people started coming to you saying, "Can you do this and that?" How do you stay hyperfocused, Sylvia?

I have gone through moments where people come to me and they're like, "Can you turn this into where you take children and never get to go back to their homes, keep them here, and have a boarding section for the children?" That's not what God has placed on my heart to do. I tell them because we have that as our strategy that children will be taken care of during the day and taken back home in the evenings. We are not wavering from that. Sometimes when I think of ideas from what our vision is, that's when I share them with the board. We have a board and it keeps me in check.

Because of the stigma attached to people with disability, they are afraid to come out.

That's what the board is supposed to do.

The temptation sometimes goes, "So and so has a very good idea. Can we do this so that we meet this need?" They are like, "No, stay focused. This is what we set out to do." The board helps me stay in check.

You've got abandonment. For leaders, people always come when you start being successful. Other people are going to say, "Can you do this and that?" I love it that you said, "We got to stay focused on what God has placed on our heart." Otherwise, good is the enemy of great and the devil loves to see a distracted because then you come off.

The last point my father talked about was vision. My dad came from some difficult situations, but he said, “Vision is seeing what needs to be done and then doing it.” You epitomize that. You saw the need and then you're doing it. You have your board and your wonderful staff. You have people. God is blessing you, but how do you craft your vision for what's next for Stars?

Still through prayer. I pray. I believe that Stars Ministry is not about me as Sylvia. It's God’s. He is using me as a vessel. When I was starting out, God spoke to me. I was at my kitchen sink washing dishes and I had these thoughts of, "Start Stars Ministry for children with disabilities." All of a sudden, I started weeping and God was putting it on my heart. "You are a vessel." I knew that it was related to serving the Stars.

Over the years, I can testify that I am a vessel that God is using to reach all the children that we are reaching. I always take it back to him because there are times when I have desires. For example, now I would love us to have a place for the Stars of our own. That's the vision that I have that we can have a place that will model children that have disabilities in a community. I don't have the resources, but the Bible tells us he owns the cattle and 1,000 hills. He has the gold and silver that we need. He's the anchor. He is where I run to. I have seen God work.

I love that you tied the vision to being a vessel. That's that servant heart and that servant leadership. If we could do it on our own, then what do we need God for? What a blessing. Tell me a little bit about your vision for where you would like the school to be. Tell the readers what you shared with us, where you are right now, and what your hope, Lord willing, and as he provides, what your vision is for the footprint of the ministry going forward.

We are in Kampala, the capital city of Uganda, in a suburb called Luzira. We are renting premises that can take care of about 50 children. That's where we are at right now. We are renting, but my desire is that we would have a property where we will put structures that will solve the needs, a place where the children are accepted, loved, cared for, and valued so that the community will see these too are people.

Over the years, I have seen some change and acceptance. As we go on, many are getting to trust the ministry with their children, but also the community looks and says, "That's the place where they accept children that have special needs." My desire is that we would get a place where we will not be kicked out.

That's the thing about owning your space. We deal with that too in the states when you're a renter. I have links to Sylvia's Ministry for the readers, so you can see the beautiful pictures of what she's doing there and how you can be a part of her vision going forward. Sylvia, we covered the loneliness, the weariness, the abandonment, and the vision. You certainly have an incredible perspective on that with your Stars Ministry in Uganda and how the Lord is taking you through this. Anything else for our readers regarding leadership that you would like to share with them?

I would like to encourage the readers to join hands with us to see the work of God move, to serve the Stars with us, and to show the love of Christ to these children. We serve children with disabilities and I can't do it alone, but together we can do this. We can show Christ's love to the community. Maybe we can even multiply to enlarge and meet other needs in other communities. I would like to encourage the people that follow this show to join in. They can encourage us. They can support us financially. We are registered as a C3 nonprofit with Faith and Learning International.

I can attest that your donations go through this, just as it would in the States and you can get all the documentation for that. Sylvia, I so appreciate your perspective on leadership. I appreciate you with the bold ass because that's what we tell leaders. You are out there. You're here with other people, the people that you meet, the books that you read, and that's what you're here.

Thank you for letting people know how they can partner with you as part of this. I'm tremendously excited. I knew Nicholas and what you were doing, but until you came and spent time in my home, I had no idea the difference you were making and how big the challenge was. I look at your website in those pictures and it makes my heart sing. I thank you so much. Don't listen to what's going on in the world. Remember, unbelievable leaders like Sylvia are out there making a difference, looking for other leaders like you to partner with. Sylvia, thank you again for sharing this.

Thank you, Tracey, for the opportunity and the love.

We'll see you soon or you get back over here. Hopefully, we'll be getting back over there. We saw you, but what a blessing. To our readers out there, we want to thank you so much for your support of the show. If you liked what you read, please be sure and hit the subscribe button and share it with somebody else who could read some wonderful, uplifting leadership on what it takes to pay the price of leadership. We're all in this together and we're here to support one another.

Also, if you do us the honor of a five-star rating, we’d appreciate that. Come on over to Tremendous Leadership and sign up for two free weeks of eBooks and get some unbelievable reading material for you to listen to and get connected with Sylvia too, so you can stay informed on her ministry and what's going on. To our Tremendous Leadership tribe out there, we couldn't do it without you. Have a tremendous rest of the day.

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About Sylvia K. Kalyebara

Sylvia K. Kalyebara is a wife and mother of three children. She is also the founder of Stars Ministries in Uganda where she serves alongside families taking care of people with disabilities, especially children. She has seen her work blossom from taking care of 2 children to 48 and currently has a staff of 16. She formed this ministry after witnessing the work of Christian men and women at Wheaton College, where her husband was a student. Sylvia is called to help others see how God loves them.