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From: Steve Brown
Date: 25 Aug 2000
Time: 10:11:43
Remote Name: spider-tr034.proxy.aol.com
THE TRUTH ABOUT TELETHONS by Steven E. Brown
I recall a magazine article I read years ago describing the efforts of a person with Multiple Sclerosis to retain her well-paying job and then to find a new one that matched her abilities and expectations. She failed. Or, more properly, her society failed her. She unnerved prospective employers who were afraid her dreaded disease would frighten both co-workers and the public, not to mention render her unfit to be a productive, and compatible, employee. After several years of searching for appropriate employment she determined her best route to success and continued productivity was through free-lance photography and other artistic endeavors. Her disability did not force her out of the employment mainstream. Society's handicapping barriers did. Not long after that I perused a newsletter that included two articles concerning a young woman with Gaucher Disease (GD), which is also the cause of my own disability. She was constantly being described, and describing herself, as being victimized by this disease. Gaucher Disease may not be a welcome guest. I'm familiar with its broken bones, heartaches, and physical pain. But I refuse to be labeled a victim who has survived its ravages. "Victim" has an ugly connotation that offends--no, enrages--me. Being told, or believing, I'm a victim places all the responsibility for the results of the disease in the disease itself. Being called a victim implies that I have no control over the way I react to my disease, to my disability. But I do have control. I can decide whether to succumb to my pain or to adapt to it. I can decide whether I want to grind my bones into pieces or to use a wheelchair for mobility. I can decide. I am a victim only when I let my disease rule me. I am a person with a disability when I choose how to react to the characteristics of my disease. Anyone can choose to be a victim of anything. And anyone can choose not to be. You're probably wondering what these thoughts have to do with telethons. Two things. First, I chose that title to grab your attention, just like telethons do. Second, the way the majority of Americans think and feel about disability has been shaped by telethons, by what we might call "the telethon mentality." When I think about Muscular Dystrophy, it is "Jerry's Kids." Telethons may do some good. They may expose some people to disability. They may raise money for research and charity. They may give attention to people who need it. But they also isolate people with disabilities as victims, as subjects of charity, as a "thing" to be considered annually when their group's time comes to appear on TV. Disability advocates insist on integration. Telethons segregate us as a population to be pitied and helped. The truth about telethons is that they are mechanisms of segregation. The truth about accessibility is that it is a mechanism of integration. It’s time for us to stop being victims. It’s time for us to stop being ruled by our diseases, our impairments, our limitations. It’s time for us to control our lives, our environments, ourselves. It’s time for us to make telethons and "the telethon mentality" a thing of the past. It’s time.