DisPatches, Spring 2003

On Being Understood

by George Barker

Writer George Barker

  One of the reasons I enjoy the Adaptive P. E. Program so much is that the instructors and most of the aides understand the eccentricities of their students' disabilities. I've been disabled by tension athetosis for 65 years. Along the way, I've been told, "Relax!" several times a day.
   For the first half of all those years, I thought I would give almost anything to be able to walk. Then for the second half I wished I could speak more clearly.
   Recently I've shifted to wishing I could use my hands better. Now I'm beginning to think that memory is most important. Without memory, I wouldn't be able to remember which of these things I want most. I may forget how many halves are in a whole.
   Being unable to speak clearly is the thing that has bugged me the most.
   I intensely dislike to hear my own speech played back to me. I can't believe I sound that bad. Maybe someone has fiddled with the damn machine and fouled my speech up! It's more of a gargle than a voice, and, my God, who could ever understand that mess? It is so strangely strained. And it sounds like the tape can't enunciate. But I know it is not the machine. It is me.
   I've learned not to take it too hard. If I laugh, it relaxes me a little and makes my conversation easier. I feel better, and the person who can't understand what I'm saying relaxes and feels better too.
   The harder I try, the worse it gets. This is a mental block akin to stuttering. On the other hand, if I become angry, I can be damn well understood. I think if I get focused on something outside myself, I do much better.
   It's been true also of walking that if I strain and tense up, it becomes more difficult. When someone has been helping me walk and I didn't perform properly, the sidewalk was apt to come up and hit me in the face.
   In my younger days, seeing an attractive woman was especially disconcerting to my walking style. This still throws me off sometimes, though to a much lesser degree. Unlike the speech problem, it is not exactly socially acceptable to break into laughter when I'm in the presence of an awe-inspiring woman.
   The use of my hands is limited by an infantile syndrome called forced grasping. This was particularly hard for me during adolescence. I, in common with others my age, daydreamed of holding hands, etc., with young women. Forced grasping made such intimacy very difficult. This frustration may have had a hand in freezing my mind in the adolescent state of which some of my friends complain.
   It used to be very embarrassing to me to have to be fed at restaurants. I thought that people were looking at me and thinking, "Why is that big lug being fed by his mother? He ought to be ashamed of himself."
   I got over that in Hong Kong in 1956, when there were many peasants just out of Red China who were uninhibited about their interest in this disabled foreigner. I became accustomed to being the center of attention. When I came back to the States, I felt kind of let down when people averted their eyes. But that did not keep my fingers from making involuntary fists.
   Let me think, now... What was I going to say? Oh, yes, memory. Memory is an enigma -- sometimes it's here and sometimes it's gone. I pray my memory loss will be minimal as I grow older, and that it never gets so bad I can't remember my name.

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