Posts tagged Disability Awareness

Taking Time to Remember

October 1, 2008 · Filed under Disability Awareness, Facilitated Communication, Music & Art, Rett Syndrome, Writing, Writing Memoirs · Tagged

I am amazed by how many people have read my last posting. It is hard to be honest about things like that because people see themselves sometimes. I don’t want to scare people off. I want others to imagine what it is like to receive unkind looks.

I am not in a day program like many of my other classmates who graduated with me. I was so sad when I was in a program with adults with high physical limitations. It didn’t allow me to pursue my dreams, so I spend a lot of time in our community trying to find a place to walk with my walker, trying to find other adults who like to write, paint and share music.

I am not sheltered in a program that has walls that keep others from viewing me. It seems many typical people are not used to seeing adults who are dependent in our community unless it is the mall. I don’t go to the mall. I don’t like shopping all the time. It is not my dream. Other adults cannot always share that they don’t really like walking around Wal-mart or going to the bowling place. I like to bowl if I have a friend to hang out with, but it’s to be with my friend, not because I am disabled and like to bowl.

I hope soon to have other adults like me to do things with. I have to walk in the hospital halls when it is cold or wet because there is no good place for me to walk. I want to have a committed group of people to get together with and share life. I hope I can do this and live at home with my family. It seems like a lot of people have to live in a group home to have friends. I find that sad.

I want to be in my community with my family and have friends too. I don’t think people like me are seen often enough in our communities, so we are objects of curiosity rather than neighbors and friends.

Comments (1) »

The Cruel Stare

September 28, 2008 · Filed under Facilitated Communication, Rett Syndrome, Uncategorized, Writing Memoirs · Tagged ,

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.

Karly

Comments (9) »