I wrote this post over a year and a half ago, and am finding the time and courage now to share it with you. A lot has changed in the world since then. As I re-read my post with the lenses of racial injustice, it seems even more important to expand my view of “causes” and seek to remedy any unconscious stigmas we may have.
My 2018 self encourages me anew today me to go outside my circle and learn new names, hear their stories, and know – as Crispus’ father put so perfectly, we are all created by God.
“What?! You’re going to be in California when I’m In Uganda?!” I said to my Ugandan contact. Welp. There went my plans.
Bummer. I had made plans to film at a children’s home in Uganda during an extra week I had while in the country. But 14 days before I left, my contact wouldn’t be there after all to host me. I had a whole extra week in Uganda to figure out something to do.
I mentioned my predicament to a friend at church. Her face lit up, and she told me her cousin-in-law (if that’s a thing) actually lived in Uganda! She worked with a program that served special needs kids there.
Now, let’s just start this blog with a heavy dose of honesty and vulnerability. My gut reaction wasn’t a super enthusiastic one. It was more, “That’s a good fallback option if nothing else pans through.”
That’s not because Ekisa Ministries is anything short of an incredible organization that is changing the lives of kids and their families–but because special needs never really felt like “my cause”.
You know what I mean?
Don’t get me wrong–I have causes. If people ask, I’ll tell them I’m passionate about orphan care, foster kids, and serving refugees, ending human trafficking. That was my list. Those were the causes I typically focused on. But special needs kids (while it’s unfair to even categorize them) just wasn’t on my list.
I didn’t figure out why I was so hesitant to the idea – and why it was so wrong – until I came home.
I reached out to a few other organizations while trying to figure out what to do with the extra time I had in Uganda. I was really leaning towards another that provides clean water to villages. But one morning while reading my Bible, I came upon this verse:
“Give justice to the weak and fatherless; maintain the right of the afflicted and the destitute. Rescue the weak and needy…” Psalm 82
It was like a windshield wiper on the dew of my heart. It was so clear – these vulnerable kids are the very heart of God! Why was I so hesitant? Moreover, this was why I love film in the first place: to tell stories for those whose voice goes unheard and elevate their voices.
So – flash forward a few weeks, and I’m at the home of Crispus and his father, Grace, for the first time, in the middle of a small town near Jinja, Uganda.
If you’ve watched the video, you know that Grace has a 10 year old son, Crispus, who suffered from hydrocephalus at birth.
Now, special needs in America is one thing. Special needs in Africa is another. Resources for healthy kids in Africa are limited enough. So sadly, many people in Uganda literally find spending money on a special needs (in their minds: “sick”) child is a waste of resources.
The stigma against kids with special needs is a real thing. Grace, Crispus’ father, told us how everyone in his community told him he was wasting his time and money by getting Crispus the surgery and medical attention he needed. Often, if people decided to keep their kids with special needs, they would keep them inside all day, every day, for fear of the stigma that would come upon their family.
Why? Because of the ideas surrounding kids with disabilities.
People in villages tend to believe that to have a child with special needs means that the child (or you) are cursed. Because of that, many children are literally thrown away. Into pits and latrines.
And sometimes, kids are brought to an orphanage, as the families are unable to meet the complex needs their child has. They believe long-term care by an organization is the only solution.
This is where Ekisa comes in. They know the best place for a child to grow and thrive is in their own home and in their own community. But many parents feel inadequate to care for their kids with disabilities. Through Ekisa’s Community Care program, they come alongside parents by teaching them how to care for their kids. They partner with parents by matching their funds for medical expenses which add up quickly for already poor families. They also host group meetings with other parents to create a sense of a community, letting other parents know they are not alone.
If you watched the video, you’ll see that Ekisa was a total game changer for Cripsus and his family.
With Crispus able to walk, Grace began shifting perspectives in his village on what kids with special needs are like. He took Crispus for walks, he enrolled him in school. He insisted that his son was normal. He was proud of him.
And it started turning heads in the community.
What I love about Grace, is that all of his reasons for rejecting the common beliefs of his culture were completely rooted in his faith. He expressed multiple times his belief in God’s plan for his life, the way he trusted God over his life, and his certainty that God created Crispus and loved him the same way he did everyone else.
Now- don’t even get me started on Crispus.
As soon as I saw this boy and he opened his mouth to say hello, my heart absolutely melted. Like I said, I was always cautious around special needs kids, feeling like somehow I couldn’t connect with them. But Crispus changed all that.
The definition of this boy is a word his father used to describe him: jolly. Ha!
This kid just lights up any room he is in. Give it a solid 30 seconds of being around him and you can’t but have a huge grin on your face.
We quickly learned that Crispus was *very* passionate about cars. As soon as we would pull up for the day in our van, he would request to sit in the front seat and pretend he was driving it. [In fact, Grace told us he has a steering wheel at home, and he frequently uses to drive around the house!]
After dragging him out of the car so we could film him, we began roaming the neighborhood to get some shots of him and his dad. And let me tell you, this little boy is a celebrity. All those shots in the video of him waving and saying hello and hugging his neighbors? Totally natural. That truly is what happens when he goes places.
And this little boy has confidence! He sings, he dances, he laughs. He loves being the center of attention.
I still can’t pinpoint exactly what it is about Crispus that stole my heart. Maybe his sweet smile? Maybe his childlike curiosity? Maybe the way he loves his dad? I couldn’t help but laughing hysterically the whole time I was with him. Every time I opened up the project to begin editing, a huge grin wrapped around my face the entire time. He really is an incredibly special little boy.
There’s so much more I could say about the hardship this family has faced, even beyond stigmas. We didn’t have time in the film to dive into the fact that Crispus’ mom died when he was a toddler, and the way Grace told us that not a day goes by that he doesn’t think of her. This family has been through so much.
But what stands out to me the most about this story, is the deep, deep, unconditional love Grace has for his son. That no matter what Crispus accomplishes or who others say he is – he is deeply and unconditionally loved by his father. That his father will always see Crispus wholly, for who he truly is.
If that’s not a reflection of the love of God, I don’t know what is.
I wholeheartedly feel like making this film was a gift to me just as much as it was to Ekisa. I am so profoundly honored to have met this family and hear their story. It will forever be imprinted deep within my heart, and my prayer is that it does the same for others.
I thought I was not “a special needs person”. But now I realize it’s just because I didn’t really know the story of a child like Crispus. I didn’t know their struggle, the challenges they’d overcome, and what made them unique.
And most of all – I didn’t know their name.
Because it’s not a category of people.
It’s about Crispus. A person. A human being deeply loved by God.
Who are the groups of people whom your gut reaction to might be nervousness, or confusion, or a lack of understanding?
Maybe the refugees in your community? Maybe the homeless population? Maybe elderly people with Alzheimers? Maybe people of other colors, other faiths?
I encourage you to do something that will be a game changer for you:
Learn their name.
Go and be their friend.
Listen to their story.
It will change your life in the same way Crispus has changed mine.
For just $30 a month, kids like Crispus can receive physical therapy and medical assistance – which is clearly a life-long game changer for these children – and their families. Sponsor a child at Ekisa.