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Posts Tagged ‘disabilities’

We don’t see things as they are; we see them as we are. (Anais Nin)

I am at the funeral of a man whose name I have heard for more years than I can count. Yet, I have never met G. He could have had brown, blue, or green eyes, been tall or short, had red hair or none.

Sure, I have created a picture of him in my mind. However, I have met people after hearing only their voices and my predictions have had a zero percent accuracy rate. Chances are, the image I’ve summoned keeps my prediction skills in the same nonexistent category.

I have come to support friends who knew G.

He had a mental illness, paranoid schizophrenia. Yet, he was not his diagnosis. When the people at his church came to know him, they recognized his unique sense of humor. The church members accepted G—as he was. He liked coming to services and being part of something important.

Smoking comforted his symptoms until that comfort turned on him and destroyed his body. One incredible day, with the prayer support of his friends, he gave up a three-packs-a-day habit within twenty-four hours. Too late, but nevertheless a miraculous change had occurred. He knew he had done something for himself.

As buoyed as I am by the beauty of the funeral service, I realize I missed something. I missed knowing G. The casket is closed. If I speak to the man inside, only his spirit may hear. I will not get a response, except in my thoughts and imagination.

I think about the anonymity of the casket. Those who mourn see inside with their memories. I need to listen even closer, and catch opportunities to recognize truth beyond the obvious, the judgments people make without even realizing they are making them.

Sure, a talkative lady with a quick smile is easy to approach. A child next to her who appears to have multiple disabilities may seem to disappear in the crowd—even though the child’s presence is like the ignored elephant-in-the-room. He is not his disabilities.

Sometimes I have no problem saying hello to people with obvious difficulties. Then, at other times I have felt every intelligent thought I have ever had drop away. Opportunities to make connections evaporate, especially when I feel anger in the air.

All of us are of infinite value. I pray to recognize that worth—even in the wrinkled face I see in the mirror. I can be hardest on me.

you are of infinite worth

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I am different, not less. (Temple Grandin)

 If I could I would shout Temple Grandin’s statement across the Internet, national news forecasts, and local gossip networks: “I am different, not less.” Autism did not prevent Grandin from earning a doctorate degree. Actually, when I grow up I hope to be just like my youngest granddaughter, Ella. She has Down syndrome.

Some people turn away when they see someone with a disability like Down syndrome, as if the tripled twenty-first chromosome were contagious, or as if communication with an individual with a rounded face and slightly slanted eyes were similar to interaction with an alien from another planet. Organizations such as the National Down Syndrome Society have helped alter that notion. Efforts to change attitudes toward folk with other disabilities continue. The Autism Society explains how a person with autism perceives reality.

I have to admit that I have learned more from Ella than she has learned from me!

Our little girl has charisma. Her mission begins with a smile that reaches into the heart, an acceptance that doesn’t judge. When Daddy and Cousin Kate stopped by the daycare center to take Ella on a trip to visit her great-grandmother, the other children formed a circle around her, keeping Ella captive. They were unwilling to relinquish their princess. Daddy needed to trick the children into a race so that he could grab his daughter and run.

Ella does not present herself as better—or less—than anyone else. True, her life has barely begun; she needs to double her age to reach double-digits, but I have never seen any signs of ego, impatience, or striking-out-in-uncontrolled-anger. Oh, she knows the word no and uses it often, but not as a weapon. She seeks independence the way any other child does.

Our granddaughter has had three surgeries, two that were serious; she is terrified of medical settings. However, after each visit she recovers into her smiling self with remarkable speed. She lives in each moment; now is the only time that offers usable power.

I study a photo of the toddler son of a friend. He, too, has Down syndrome. He has had multiple surgeries. Nevertheless, he grins at the camera as he waits for his breakfast. I think about how few adults would respond with such enthusiasm. Not only would they be repeating poor me as if it were a refrain in a popular song, they would be wondering why they had to wait to be served, considering all they need to endure. Most folk with a tripled chromosome don’t see themselves with the sun rotating around their needs.

I catch myself fussing with a bouncing cursor that reminds me of a drunk fly circling spilled honey; my irritation almost reaches uncontrolled cursing of another kind. This should not happen!

Yeah, well, I’ll figure it out, eventually. In the meantime, today is a day to celebrate, September 8, 2014. Ella is five-years-old. (Posting won’t happen today, however. I need a day or so to let the words settle before I edit them. I cannot claim perfection on any level. I don’t even feel free to be totally me no matter where I am; Ella is still giving me lessons in that area.)

I am sharing a photo of her birthday cake, not because it is beautiful, but because it is delicious inside and a tad ordinary on the outside. I have never taken a decorating class and probably won’t—I have a tendency to eat too much of the art form. The layer-fit alone disqualifies my creation from any cooking magazine, but I bake from scratch and the frosting contains fresh strawberry.

Happy Birthday, Ella! May we celebrate the differences that make any ordinary individual spectacular.

Ella's birthday cake, five years old

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