In August 2017, the Uganda Down Syndrome Association was visited by Lauren Costabile, a filmmaker and Down syndrome advocate from the United States. Lauren produced an excellent short video of her visit and wrote this great account of her experience visiting children and their families across Kampala:
On 19 August 2017 I had the opportunity to visit the Ugandan Down Syndrome Association. I didn't know what to expect. I had never been to Africa before, but I was very curious to see what goes on with children with Down syndrome in Uganda and how they are perceived by the culture.
As I turned the corner of the red dirt road I came upon a small office, the headquarters of the Ugandan Down Syndrome Association. I was greeted with a smile by Michael, the head of the organisation, who is also a parent of a child with Down syndrome. He began to tell me about the children and their families. We then hopped in the car and began to travel to the homes of the children they serve. We spent the day journeying through different areas of Kampala and visited countless children. Every child was different, unique and beautiful in their own way. We went into each individual home and for the most part we were greeted with love and hospitality.
I gave each child a toy and that simple gift brought so much joy and happiness to these families. It made me realise that there are so many opportunities for us to make a difference in the smallest of ways. We can't all change the world, but we can change one person’s world. After speaking to the parents, I learned that some of the children had the opportunity to go to school, while others did not because their families couldn't afford the fees.
After visiting some families in different areas, I saw how people in general viewed those with Down syndrome. Culturally, these children are seen as a "problem." I experienced that stigma first hand. There is a huge lack of education about children with Down syndrome among Ugandan people. The level of acceptance and knowledge varied from family to family. There were some families who seemed to really understand their child with Down syndrome and showed them such love and support. That was really beautiful to see and experience. Then there were others who labelled their child as abnormal and were uninterested in learning how to help them.
Despite being misunderstood by society, these children exuded such joy and love. They ran to me when I came to visit them, embracing and hugging me with a big smile on their face. The mere fact that I held these children spoke volumes to their culture. Some of these children are never held or touched because most in their society see them as a burden. Because I know that these children are a blessing and never a burden, I was happy to be present to them, to speak with them, spend time with them and spread a little joy. Although there was a language barrier, it didn't matter. There was lots of laughter and lots of love. No words had to be spoken for me to get a glimpse into their special hearts. These precious children truly captured my heart. I hope that my visit helps their community understand that these children are valuable and worthy of love and acceptance.
You can see more of Lauren’s work at http://www.laurencostabile.com/films/.