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 ![[----------------Horizontal Rule----------------]](/webart/hrule.gif){kind=small}  5.Memories of MeasurementOne of my most vivid memories of childhood is of the day I realized I was viewed differently by other people. My mother and I were in Colorado at the time. We had recently moved there from our home in Chicago, Illinois to attend a boarding school run by Edna Hill Young, a pioneering speech pathologist who served clients with severe disabilities. This was unusual for the time, because most speech pathologists were treating traditional speech disorders such as stuttering. Ms. Young had a cadre of helpers, recruited, I now realize, from the University of Colorado. These people performed various functions in Ms. Young’s universe, not the least of which was observation and recording. It seemed like every minute of our day was observed and documented on paper; what was done with all this paper I have no idea. It’s all probably gathering dust somewhere in some great archive. My mother took no notice of all this recording until one day one of the observers oozed up to my mother like a spreading oil slick and, putting on her best clinical airs, said, "I’d like to keep in touch with you. Michael seems like such an interesting case." I thought I saw smoke rise from the top of my mother’s head and heard volcanic noises coming from deep inside her. Her eyes brightened like coals fanned by an unseen wind. I knew the young woman would never know what hit her. My mother locked on to her eyes. "My son is not a case," she said in an even handed tone. "He is a little boy." Having spoken her mind, she turned and walked away, leaving the young woman alone with her thoughts. My mind has returned to this scene often during the intervening years. People with disabilities put up with a lot of measurement in their lives. Teams of medical personnel swarm over us at regular intervals recording our every deviation from the norm. This is often done in a setting that is so cold and impersonal that it affects our ability to respond as well as we can to the test at hand. My mother once invited my pediatrician, a woman who specialized in the care of disabled children, to lunch at our house. As the meal concluded and I started to do my thing, the doctor was amazed at what I could do in my own milieu. After that luncheon encounter, she never treated me the same way in her office again. This is how it was when I was growing up. Have times changed? I certainly hope so. We don’t need to be ensnared in the medical model of life anymore. Besides, the myth of that paradigm was pretty much exploded in the 1970’s by the independent living movement. The independent living model emphasizes how well a person with a disability functions in his environment rather than on his medical condition or deviation from normalcy. Now we are free to concentrate on the business of living, rather than worrying about how well we do on various medical tests and to be judged on the quality of our lives rather than our medical diagnoses. This should be cause for celebration. It also should be cause for caution. Consumers in the AAC community should realize that there is much research to be done. We shouldn’t let our feelings about what may have been done to us in the past influence the need for research now and in the future. From research comes progress, not to mention prospects for funding from both public and private sources. Researchers have to realize something, too: Although we augmented communicators are the raw material behind the numbers they crunch, we are also individuals with feelings, hopes and dreams. They should remember this as they are putting us through the Statistical Package for the Social Sciences TM . They also should put us on their research teams. They may be pleasantly surprised to find we have some good insights into the problems they are working on. If they try to reduce us to interesting cases that can be put in a file, they may be faced with an angry mother who will ruin the day, not to mention some punk with a computer who might write an essay about them.
This article appears in AS Volume 2, # 1. You may order this issue by clicking on Ordering Home Page Online Ordering 
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