An Ocean Away, but Not So Far Apart

By Jolene Sharp, Chief Strategy Officer, TN Council on Developmental Disabilities
Three young Ugandan boys of varying ages who all have Down syndrome are pictured with joyful smiles or in the midst of laughing and matching bright pink shirts
Children with Down syndrome took to the stage to dance, and the room filled with clapping and celebration.

Eleven years ago, I stood in a dark neonatal intensive care unit (NICU) room. It was the wee hours of the morning, and I had just finished feeding my newborn baby. I was exhausted as only a new mother can be.

I was also grieving. Tears streamed as I lifted my face in prayer.

Lina was born September 13, 2012. Her post-delivery diagnosis of Down syndrome was a shock. She spent 10 days in the NICU learning to feed. It was on one of the very first nights there that I laid my bruised heart open to God.

And then, I felt a response: “I know you’re scared. You have longed for purpose. Here it is. Trust me.”

In the following years, I have had countless reasons to thank God for the gift of Lina. Her big brother has since received his own set of diagnoses. Both my children are every day becoming more of who they were meant to be. It is my greatest privilege to learn who that is and support them on their path. Through advocacy for my kids, doors have opened in my community and here at the Council to work for belonging and opportunity for so many others. I have found joy in a purpose shared with a broader community.

Still, I wasn’t prepared for the phone call I received earlier this year from friends in Nashville. Their invitation seemed to come out of nowhere: “Would you consider traveling with us to Uganda to share your story with parents of children with disabilities?”

These friends have established ties to a university in central Uganda. They train, mentor, and support students to become leaders in communities across East Africa. Through their local contacts, they learned that two sisters were forming a new disability organization for parents in the area and were looking for support.

I was overwhelmed by the opportunity. What did I really have to offer? Would my experiences here in the U.S. be relevant to families half a world away? Would I be able to bring anything to the situation that would be of lasting value?

I asked a lot of questions. I researched. I prayed. The answer came back in words I’d heard before: “Trust me.”

I said yes.

The power of a network

As I began to prepare for my trip, I needed to answer one big question: What disability resources already exist in Uganda?

Working for the Council has taught me the importance of connecting with existing resources. Sustainable support for a new organization would need to include local partnerships wherever possible. I had no idea where to start. I should have known our Council network would deliver.

A member of staff sent me information about a virtual conference for disability organizations in East Africa, which offered a wealth of information. Another contact linked me with the Association of University Centers on Disability, which sent a request to its national network for information about work in East Africa. Through those responses, I connected with leaders at some of the largest disability organizations in Uganda. And through those contacts, I also connected with a parents’ organization in the very district I was visiting. The dots were beginning to connect.

Photo shows Jolene crouching down to speak with two young Ugandan girls who are seated against a bright blue painted wall outside in the dirt, and they are smiling
Jolene visits with residents at a local home for people with disabilities

New sights, familiar magic

On May 21, I joined four other Americans on a 30-hour journey to Uganda. There is really no way to convey the joy and sensory overload of the week that followed. Anything I say will only be a caricature of the vivid sights and the warm and affectionate people. The food was delicious, heavy on fresh bananas, mango, pineapple, and jackfruit, with Indian influences like rice and chapati. I now crave groundnut (peanut) sauce over rice – a Ugandan staple I haven’t yet learned to make at home. The rolling equatorial landscape was high contrast, lush green against bright red soil. In-town traffic was choked with crowded buses and boda bodas (small motorcycles) weighed down with impossible-looking loads. Everywhere, I saw beautiful children – evidence of Uganda’s very young population.

Beyond the pleasures of a new cultural experience, there was work to do. On my second full day in Uganda, I met with the women behind Blessing Maama Uganda Development Association.

I found kindred spirits in Lydia Bantira Kibombo and her sister, Roy Baagala. Grief over the death of Lydia’s 1-year-old daughter, Blessing, led Roy to suggest reaching out to other parents of children with Down syndrome – like Blessing. The effort grew beyond the two women’s expectations. By the time I arrived, they had connected with dozens of families of children with Down syndrome and other disabilities, all in need of information and support.

Lydia and Roy had invited other important contacts to our meeting. The head of the Down Syndrome Foundation of Uganda was there. So were medical staff at the biggest hospital in the district. Leaders with the district parents’ association I had connected with were also there.

As the meeting unfolded, it began to feel familiar. People in the room shared needs and opportunities they were seeing, and themes emerged. Organizations who hadn’t known about each other talked about how they might work together.

I realized: this feels like so many meetings I’ve attended for the Council! An ocean away, the same magic was happening. People across organizations were connecting the dots on shared work toward common goals. The room was full of the power of common purpose.

a young child in a bright pink shirt and an adult female family member with a colorful dress is shown leaning over his shoulder - the boy is looking at the camera directly and smiling, his family member is smiling down past him
A parent event offered a sense of hope and community to families who were gathering together for the first time.

Joy in disability

The following day, more than 20 families gathered for a Blessing Maama-hosted event. A roster of speakers, including local leaders, addressed the gathering. The leader of the district parents’ association shared information about health services for children with disabilities – welcome news for the audience.

As I sat at the front table, looking out at the crowd, my mind traveled back to that dark NICU room 11 years ago. I couldn’t have dreamed that the path from there would lead to East Africa, to a room full of families finding hope and community. When I stood to speak, the message that poured out of me was one of shared purpose – of finding that together, our path forward is one of joy.

Not long after, the stage was crowded with dancing children, the parents videoing and clapping along. Most of these families had never before been together with others who shared their experience. Very few had experienced celebration associated with disability. As I have returned home, this is the moment that has stayed with me – families laughing and clapping together as their children with disabilities danced.

The work continues

In my final days in Uganda, I met with several other key disability contacts. I gave a talk to a roomful of university students about how they can become disability advocates in their own communities, from South Sudan to the Democratic Republic of Congo to Rwanda and Zambia. Since my return, I have stayed in touch with my new contacts, researching resources and working toward continued partnership.

The needs are familiar: a shift in attitudes and expectations, access to education, improved healthcare and support services.  As with all work for change, the barriers can feel overwhelming. When I start to feel discouraged, I pull up pictures of children dancing as their parents clap along, and I remember the joy of purpose shared across the miles.