Given the invitation to write on the theme of ‘love,’ Kupenda for the Children came to mind. Based in Kilifi, Kenya, Kupenda equips children with disabilities to achieve their God-given potential by working with families and faith-leaders to transform harmful beliefs about disabilities. Kupenda is also a Vista Hermosa Foundation grant partner. When we sat down with Cynthia Bauer, U.S. Executive Director and Co-Founder, we invited her to share a story of love, where love grew in a family, where maybe love was absent before because of the stigma surrounding disability.
Cynthia’s response got to the heart of a much more challenging question: what does it mean to practice love, the wish for ourselves and others to be happy, in the face of illness, physical pain, death or loss?
The story that comes to mind is a recent one. It’s somewhat tragic but not at the same time. It’s not going to have the ending you think it will. I think we tell a lot of stories that have happy endings and everybody’s okay, right? In this particular one, there is a young man named Jerald who had Duchene muscular dystrophy. If you know anything about that condition, it is fatal 100% of the time. Usually by the time someone is in their early 20’s it has progressed to a point where they will die.
People in Jerald’s community were saying that he was cursed by witchcraft and that it was the father’s fault that this was happening because somehow there is a [traditional belief] that you can make money from it. In the process, when Jerald was in a place where he needed more support because he [couldn’t] walk anymore and so on, his mom passed away and people said it was the father’s fault. Like somehow there is a curse on the community, a curse on the family that was making this happen.
So, Kupenda’s Kenyan Director [Leonard Mbonani] did community awareness training for the family where he talked with community members in the local vicinity about what Jerald’s condition was. As he explained the fatal part of [Duchene muscular dystrophy] to close family members they all had tears streaming down their faces. Jerald was even able to get a smart phone from somebody and was looking it up for himself. Understanding the condition, the community came around him more. The father was really supportive of him.
The thing that I think is beautiful in this situation is that Jerald, at the very end of his life, was in the arms of his dad as he took his last breath. I think that we always like to talk about the happy endings, where everyone was fine and they went back to school, went to college, and got married, but sometimes there is just a beauty in talking about being surrounded by love in the final days of your life.
Kupenda teaches that it is not the disability, the difference, that causes our unhappiness – but the rigid expectations we put on love, as if love alone can eliminate physical pain and loss. Certainly, we can (and should) apply our efforts to support access to medical care, protect children with disabilities from abuse, and provide families with sustainable livelihoods. But Kupenda’s calling to practice love is bigger than that:
To be able to be loved is what we as humans all need to have. That is why we are called Kupenda, because Kupenda means ‘love‘ in Swahili and so many people around the world that have disabilities aren’t getting to experience that. We want to be sure that they get to be part of loving [and inclusive] communities.
To read more about Jerald’s story, please visit Honoring Children with Disabilities in Life and Death: A Tribute to Jerald – Kupenda for the Children