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BK Blog Post
Posted by Barbara McAfee.
Barbara McAfee is a musician, coach and consultant with over twelve years of experience in organizational change.
I am featuring a blog post written by my departed friend, Karly Wahlin. I wrote about her in a previous post.
Karly lived 27 years with a difficult condition called Rett Syndrome that affects mostly girls. It made it impossible for her to speak, to walk, and even control her own breathing. Despite these many challenges, Karly was a prolific blogger, composer, and public speaker. With ferocious support from her mother, Lois, she lived a life of meaning and purpose. She died in August of 2012 – and reassured all who loved her that her dying day would be “the happiest day of my life.” She lives on in many hearts including mine.
Here are Karly’s words:
What I have to say today may offend some people. It may make others shout for joy. I am not going to pretend that I am not hurt.
We just returned from our church service and the apple orchard we stopped at on our way home. We all love apple crisp so it seemed like a great day to pick a few apples and make something we all like so much. If I could give you a picture, it would be one you would NOT like to look at. It would be titled, “The Cruel Stare.”
In the picture I am doing what I love with my family. I am at church where I go to learn. I go to see people I know. I go to listen to the music that I can’t sing. I go to hear the Bible that I cannot hold myself.
It is a picture of me trying to be UN-noticed. I am eager to be there. However, I sit on my couch at home today, away from the stares and pauses that people give me whenever I am away from the shelter of home. I don’t think I look odd. In fact, I am told I am a beautiful person, and yet I can’t go anywhere without being stared at. I am not talking about a casual glance.
I am very aware that people are staring at me. It seems even babies are looking at me. The elderly are even more cruel. They act as if I don’t belong there. The children stare as if I’m an object of curiosity. Parents do their own cruel work by ignoring their children who are staring and pointing and gawking.
It is not the kind of stares other people get who are interesting or who are wearing something fun. It is the kind of stare that you would give when you are looking at a car crash, filled with curiosity and the gratitude that it’s not your problem, but the freedom to stare as long as you feel like it until the accident victim gets wheeled away.
The picture is the reality. It is not ok to stare at anyone out of cruel curiosity. It is my experience, and the reality of many of us who live with a physical disability.
It is hard to believe that Jesus would be impressed with the way humans have treated each other. If I understand it correctly, Jesus had great compassion for those who were mistreated and suffered in their bodies. He loved them. He showed compassion to people who were overlooked and begged for food because they couldn’t get their own. How can we be so off course?
We need each other. We need the wisdom and understanding that many people who live with great struggles have. And those of us who live with great physical struggles, need the wise understanding of friends and those who are stronger than we are.
I know that most people do not intend to be cruel, but I’m feeling too sad to share more about this today.
Postscript: Karly’s minister read this post at her church shortly after it came out. Many in the congregation were moved to tears. It was also read on the local Christian radio station.