Your child is beautiful; you are doing well

Last Saturday Will celebrated his second birthday in Kenya—the first was while volunteering for ABW at the Internally Displaced Person camp in Nakuru during the 2008 post-election crisis. This time, he enjoyed two celebrations in Kericho (his own and a community well opening), but the day was also marked by a less celebratory experience. Read his story below:

I don’t believe exaggeration benefits humanitarian work in Africa, so believe me when I say: on my twenty-sixth birthday, I witnessed the hardest thing I have ever seen in my life.

In the late afternoon, I accompanied A Better World’s physiotherapy team to assess three children with physical disabilities. The aim of the assessment is to provide further care, if possible. Our van made it most of the way to their home, but then we had to get out and walk the twisted road ourselves. The home we found was neat and orderly, with a makeshift bench at the end of a small rectangular lawn.

The first child, Sharon (age 8), was brought by her father in a pink sweater and an almost impractically flowy dress. Karen, Don, Wanda and Joanne quickly went to work to assess the physical abilities of the child. She had trouble bending her right knee when she walked, a previously diagnosed hole in her heart, and other symptoms that suggested Downs Syndrome.

Then a mother, who couldn’t be much older than myself, brought her ten-year-old and her six-year-old boys. She birthed both at home, and although she could not remember any particular difficulties during labour, their symptoms suggested cerebral palsy.

We were unable to provide extended care for these children. The physiotherapists gave instructions on how to enable the best development of each child, and then we left.

What broke my heart was not the disabilities of the children, who were as beautiful as kids could be, but the hopeful expectation on the faces of the parents for these foreigners to give them an answer, a solution, a cure. But these kinds of issues do not have easy fixes. They require repeated exercises, and persistence, and love. And even then, it is not so much the child that changes but a culture’s perception of her and what it means to be “able.”

In these rural areas, disabilities are mistaken for curses from God. If parents can’t stomach abandoning or murdering their children, then they often hide or isolate them from others. The social shame of the “curse” is too great. For those who love their children regardless of the stigma, there is a critical lack of knowledge and resources to help their kids develop healthily.

My most vivid memory from that afternoon is of Karen, the Rehab Service Director, telling Sharon’s father how beautiful his girl is—over and over again—and the look of recognition on his face.

During the assessment and every day since, I cannot help but think of my nephew Ethan, who shares my birthday and had turned one that day. He still shuffles on his butt rather than crawl, and it’s the most adorable thing on the planet. If we had any concern about his mental or physical development, then our family would be able to provide him with whatever he needs—and if it was possible, we would love him even more. Every child deserves that.

What made me feel so heartbroken and hopeless was that I had mentally prepared to deal with the tangible effects of poverty: hunger, homelessness, poor health. But stigma is an endless beast that ignores prosperity. Developed countries continue to struggle with racism and sexism. Religious traditions often ignore that their beliefs contribute to the suicides of 1 in 4 LGBT teens. I did not know where to begin.

Seemingly by fate, we were scheduled to visit the Ndanai Small Home for Children with Physical Disabilities the very next day. Its sun-filled lawns and flower-laned sidewalks created a peaceful atmosphere that immediately signaled that something was different here. The Ndanai Small Home is a residence for disabled children in the Kericho region. It was established by the government in 1986, but later closed due to a lack of funds. Since its re-opening in 2003, ABW has constructed a kitchen, a dining room, a dormitory, and a well and water system. We also installed sidewalks to make the property more wheelchair accessible, and many children of Ndanai have received corrective surgeries funded by our donors. At this home (and the primary school next door), my hope was restored.

Jefferson using his tongue to play on an iPad

Here, children with various disabilities reacted to us like the students at every other school we have visited. Some smiled shyly, others more boldly, and many were completely un-phased. What did stand out—beside a couple wheelchairs, crutches, and prosthetic limbs—was the way these kids looked after each other. Those with hands helped those without drink water. Those who could pushed the other’s wheelchair. They cared about each other.

As I interviewed Justus, the director of the Small Home, I also realized that our project was not merely an idyllic oasis for kids who are physically different. It has changed an entire community. The primary school next-door is integrated, which means that children share classrooms regardless of physical ability. They become friends with each other, compete against each other, and together, they remove stigma for an entire generation of kids.

During our visit, the physio team also conducted a three-day workshop for mothers and grandmothers of children with disabilities. In addition to sharing important physio-specific resources, the workshops empowered these women to build a community. No longer isolated, they could share their struggles and their triumphs with each other. I imagine them telling each other late into the night, much like Karen to Sharon’s Father, “your child is beautiful. You have done well”—as many times as they need to hear it.

The secondary impacts of Ndanai, its cumulative impact, has also produced extraordinary results. Our development model means that we continue to focus on the communities where we have provided support. This has led to new classrooms for the Primary School, as well as water access for the entire community. The people of the surrounding area have started to embrace the disabled children. At the opening of the well the chief acknowledged, “Those we assumed to be cursed have blessed us.”

Ndanai restored my hope for our work, but as delighted as I was to learn about Ndanai, it was nevertheless a painful joy. To see so many prospering children made my heart glad, but also confirmed what I was scared to think about: Sharon and the boys were not an isolated case. Children with disabilities exist in every community and are uniquely vulnerable to the effects of poverty. Nevertheless, Ndanai demonstrates that change is possible, that stigma can be overcome, and that ABW has a measurable impact on the lives of these children.

I feel unbelievably privileged to work for an organization that is committed to the disabled children of Kenya, and I want to thank everyone who has contributed to our mission here. Please continue to make the world a better place in every way that you can.

And to everyone who has child with disabilities in their life:
Your child is beautiful. You are doing well.

Learn more about our services for disabled children here.