The Cruel Stare by Karly
David shared this essay from his friend Karly who is a person with Rett’s syndrome. She has an inspiring blog at www.spiritdances.wordpress.com which includes this writing from her perspective on what it’s like to be on the receiving end of piercing stares because she is different.
The Cruel Stare
September 28, 2008 · Filed under Facilitated Communication, Rett Syndrome, Writing Memoirs · Tagged Disability Awareness, Faith Groups and disability awarenessWhat 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.
Karly
Posted: October 10th, 2008 under Home.
Comments: 6
Comments
Comment from karly
Time: October 10, 2008, 6:22 am
Hi Dave
Thanks you for doing such a beautiful job of reading my words. I’m amazed to hear my thoughts shared by others. It seems God is using my words to open people’s hearts. Thanks for giving me a voice Dave.
Karly
Comment from Stephanie & Teddi Solheid
Time: October 10, 2008, 6:33 am
Karly I am sooo sorry to hear how these cruel stares make you so sad. I hope that your story will help people understand your feelings. I can tell just by reading your story that you are a beautiful person. I will be thinking about you today and praying that people will hear your story and teach there children not to stare. Hugs to you.
Stephanie and Teddi
Comment from Maria Erickson
Time: October 10, 2008, 7:06 am
I understand…..I have two adult children with Tourettes Syndrome and have lived the pain of people staring, and treating my children horribly because of their disability. Too cruel to even go into detail, but know this….that God loves you…….cares about you and cares about the ignorant others. They do not understand, which is why they stare. What really becomes difficult is when you are told by friends in the body of Christ that your children are “demon possessed” because of their affliction…….I have learned how to forgive and God was SO faithful to protect me during their growing up times. This is when you run to God and hide in him, but not from others. This is your time to shine! You are an inspiration of courage and strength. Hide in Christ but shine for the world to see your beauty in Him. What an awesome testimony of his life in YOU! You can touch lives that others cannot……God Bless you sweet one of Christ!
Comment from Kim Lewandowski
Time: October 24, 2008, 10:02 am
Karly,
When David was reading your poem, I made me tear up. I have worked with special needs children and young adults for many years. I took care of a guy from the time he was 11 until he was almost 20. Not everyone understands what a special gift from God you and all special needs people are. They would rather pity you and wonder how a person can live like that. Little do they know how full of life you are and that God made you that way to so He can let the world know what a beautiful masterpiece he created in you!! The guy that I took care of could only speak a few words at first, but progressed to not being able to speak any words at all throughtout the years; but he was so smart. I would talk to him on the computer through facilitated communication and carry on conversations!! I can totally relate about the stares-when he and I would go to movies, shopping, or whatever, the people would just stare and I would get upset because they either a) thought that they were better than him, or b) they were not able to feel compassion or empathy.
I just want to say thank you for letting those people who stare know what it feels like, and for letting them know how much it can hurt. Like the song from Third Day, “Keep on Shining” , and remember, through Him, ALL things are possible.
In Christ,
Kim
Comment from jean
Time: January 1, 2009, 3:55 pm
I am the Mother of a son who has Down Syn. The lessons to be learned are all ours. My son has touched my heart and helped me to grow in ways I can not describe. I feel bad for the people who feel bad for me because my son has special needs. I am so blessed to be given this child and so is anyone else willing to let him into their heart. When people look at us I hold my head high and smile at him and talk to him and let our love for each other just light up the room and I know in our presence is our ever loving Father and Savior smiling right along with us . People can be cruel and hurt us so deeply but know that by living your life committed to God and seeking Him in all you do will get you through even the hardest day. God bless jean
Comment from Lisa
Time: July 7, 2009, 10:26 am
I am sorry that this person feels so sad about the way people stare. I understand it is very painful to think that people are judging you, but think of it this way….my 10 year old son who looks perfectly normal has the mind of a 5 year old and when he see’s a “unique” person with a disability, he is not shy about going right up and saying “hey, why do you look like that?” He doesn’t mean anything by it, he actually thinks people in wheelchairs are the coolest because they have wheels. Most people probably are just trying to find the words to make the disabled person feel “normal”, but end up staring stupidly. Maybe disabled people should wink or say hello to people who stare to let them know that it’s okay to speak. Unfortunately, it’s the people who care who will take heart, but the truly cruel people will not care any way. The Lord made us all unique and we need to remember that. If someone stares remember that they could just be shy and not know what to say. Call them on it. Say “I noticed you staring. Is it my good looks or are you just thinking too hard?” Karly, you need to know how beautiful you are and remember that when you catch someone looking your way. Just smile!
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