How do we define value? To what standard do we hold a person or someone’s ability and say, “Yes this has value.” The oxford dictionary defines the word value as “the importance, worth, or usefulness of something.” We may be quick to say every human being has value but if we take a closer look at ourselves, our ideals, our hopes for our children…is there a point where we start to see some of our true thoughts and feelings about what and who are of real value?
Last week, I had the privilege to hang out with a group doing great work with children with disabilities and their families. My observation of their work has caused me to assess my own ideas of real value and what kind of standards I place on others and myself. Matt and Ginny Mooney created 99 Balloons in 2007 as an organization to support families with children of disabilities by helping to provide community and support through their monthly “rEcess” program. rEcess is a time for families to bring their children with special needs (typically hosted by a church) where volunteers give one-on-one attention to the children through a variety of activities while giving their parents a night off. These events become an avenue to build communities of support for families.
The name “99 Balloons” come out of their own story of their son, Eliot, who was diagnosed with a disease called Trisomy 18 and who lived only 99 days. The capital “E” is rEcess is no mistake as it is a tribute to Eliot. The Mooney’s chose to celebrate his life in many ways but one was by releasing 99 balloons at the day of his funeral. They were blessed with a great community who surrounded them with love and support during the life and loss of Eliot and wanted to create that same support system for other families through the work of their organization.
One of their global initiatives in Uganda was recently documented on film, called Notable, which was shown at a screening here in Washington last week. It’s a difficult yet hopeful film to watch on the realities that persons with disabilities face in developing countries with little access to health care, equipment, support and acceptance. I was particularly challenged by the idea of value or the lack of that communities in Uganda give to people with disabilities. Simon, a Ugandan social worker said, “The only way they understand value is they relate persons with disabilities to normal people. Oh he can’t ride that bicycle…he’s useless…. The truth of the matter is that some of these children, some of these persons might really never live to be so helpful. They might not be able to drive a car. They might not be able to even simply mop a house. But then that doesn’t mean that they’re not valuable…. If you want to get value out of them then you have to appreciate them, love them for what they are and then you will be able to embrace them. To me, that’s value. And that takes what I always say, unconditional love.”
What struck me is this value system based on a person’s level of ability is not just limited to Uganda or to some developing country in Africa. We in America also have a perspective of value that is defined by productivity and success. Our country was grounded in productivity, hard work and achieving the American dream. We as Americans hope for our children to be successful and productive in their lives, which is not necessarily a bad thing. But what happens when we are faced with circumstances and/or people who don’t have the ability to be productive? How do we define them?
Another story in the documentary was about a woman who called herself “Mama Moses” after her son Moses who has cerebral palsy (CP). Her perspective and more significantly her unconditional love for him were overwhelming. As she swung him around in her arms she said, “There are even some people that can look at Moses and say ‘He’s a CP. How can someone produce a kid like that? For me I pray to God that I don’t produce such a kid.’ No. For me I look at Moses as someone beautiful and special to me. I like his smile. I love it so much. So most of the time when we are there – laughing, playing…I like him so much. You see he can’t walk, he can’t sit but what he does I like. I like it. So he’s very beautiful to me. It’s God’s plan. It’s not a mistake. It’s not a mistake.”
As my children grow, I hope to have the same perspective as Mama Moses…that I like and love them as they are and accept them fully without condition. This reminder of what real value is – is refreshing. 99 Balloons and others like them are helping to change the landscape of how people with disabilities and their families are cared for and as shown in Notable are viewed. The documentary is worth watching and worth considering in how we view and help those with disabilities. At the end of the film, Simon poses a challenging question, he asks, “Does God know that persons with disabilities exist? If the answer is yes what does he expect of us. What does he expect you to do?”