Thando: He is the funniest thing you’ll ever see. He has the mannerisms of a grumpy old man coupled with the energy of a child on a sugar high and a heart of pure gold. He is affectionate and intelligent and loves to learn. Any treat he receives from someone he first splits in half and gives to his older sister, no matter how small that half may be. The only other child with a disability in the area that he lives in that the community knows about is severely mentally disabled and no one in the community will interact with him whatsoever. Except Thando. He will go there and find the child and be kind to him and let him know that he does have at least one friend.
Thando has some sort of super-natural, inexplicable type of hope. His reality is grim. Statistics say that children like him have a 2.7% chance of finishing high school and a 0.5% chance of getting a simple job like bagging groceries or pumping gasoline. Stories tell us that children like him have futures that consist of either begging or becoming a drug mule for gangs within the townships of Cape Town.
Yet for now, he is pure sunshine and has a way of getting his little hands wrapped around the hearts of our entire Uphold team.
I was visiting with a woman named Bongiwe that has a child that was born with a cleft palette and to hear her story was one of the most humbling experiences of my life. Bongiwe had a 6 year old little girl when she became pregnant with her other child and was living with their father. When she found out that her fetus was going to be born with a disability she was told to have an abortion because the child would never amount to anything and would only cause her trouble.
She didn’t, because she felt convicted and knew that God had given her this child. The father told her that seeing as there was no history of disability on his side of the family it was her fault, so he left leaving both children fatherless. When she had her baby, she wasn’t explained what it meant to have a cleft palette.
She wasn’t told what caused it, what doesn’t cause it, and how to deal with it. She told me when she first saw her baby she was terrified because he had a hole in his face and she didn’t know what she had done wrong. South Africa’s public health system does offer free health care to children with disabilities up until the age of 18, so at one year of age the baby had its first surgery to try to close the palette. The surgery wasn’t done properly and they didn’t give her any antibiotics to help fight infection after the surgery. The incision wounds became infected and rotten, nearly killing the baby. The baby was put back into hospital as it was almost dying and was given a drip of antibiotics, but because the IV was put in incorrectly the child will be significantly smaller on the right side of its body for the remainder of its life.
Bongiwe told me that when her baby was growing up she wasn’t ashamed and wouldn’t hide the disability from people, and people who were walking on the street towards them would get scared and turn the other way. She told me there was a period when her community was so horrible that she would have to lock her two children inside the house and let them play inside—not because she didn’t love her special child, but because people were so horrible to him that it wasn’t safe for him to be in the community and it was the only way she could protect his life.
Four years after the first surgery they tried the surgery again, and the same thing happened. Granted, this surgery wasn’t as bad as the other ones so the child was is now able to make some noises and communicate, but when tries to speak isn’t understood (unless you know what words he’s trying to say).
As this child sat on my friend Jordan’s lap and pointed out different numbers and colors in a book that he knew I sat with Bongiwe and I had an overwhelming sense that I just had to tell her how proud I was of her. That I was proud of her for not having an abortion, for raising two children on her own, for continuing to love her child despite the disability. She had tears in her eyes and got very, very quiet. I realized that she had never been told that before.
For the last 6 years she was told that she was crazy, blamed for the disability, told to disown him. Her mate abandoned her and his children. She had to quit studying when the surgery went wrong so that she could be with her sick baby. And she’d never been encouraged once.
I didn’t sleep much that night. Not necessarily because of this story, because I’ve read tons just like it in my research over the last year. My conversation with Bongiwe made this struggle very real for me…because Bongiwe is my Thando’s mother.
When I say that I want to help these children, I don’t mean it to be a new pastime. I don’t mean it like I’m signing up to be on the volunteer teams at their school once a week for a year. I mean it, because their lives and livelihoods depend on it. I mean it like you would mean it if this were the future of your children, nieces, or nephews. No longer are these statistics about some child somewhere in Africa that I’ll never meet and can ignore and pretend doesn’t exist—I know Thando and I love him and he represents all of the other children. It’s a bit daunting for my heart to think that I now have 520 million children to love, but I do. They’re real now. These children now have a name, and a face, and funny personalities and quirky characteristics because Thando personifies them.
As daunting as this thought is, this revelation of love gives me drive and passion to make Uphold not just another non-profit organization. Love is the strongest, most powerful force on the Earth and that’s necessary when you consider the magnitude of what we’re trying to do. We’re not trying to build a school or clinic and help a few kids in Africa. When you consider the fact that I just told you about 1/520,000,000 children that need help, it’s not an option to be anything other than an ever-growing, always-expanding movement. We’re creating a movement, an un-stoppable force against the injustices facing children with disabilities in underdeveloped countries.
Join the movement, spread the love, Uphold justice.
We can’t do it without you.