When a representative of the Charcot-Marie-Tooth Association visited our support group, he said, “Whenever I speak to CMT groups, I ask how many think of themselves as disabled.” He finds very few raise their hand. He went on to say, “If we can’t button our shirts we just buy a button hook. If we can’t open jars we buy special jar openers.” He indicated people with CMT just adapt. Further, he claims CMT’ers don’t consider themselves as disabled. So, then when he asked our group,”Does anyone here ever think of themselves as disabled?” As expected, no one raised their hand. However, I have to admit I was too afraid to respond truthfully.
Whenever I lose my balance or trip over my own feet and fall, while sprawled on the ground, I feel disabled. When I cannot open things, especially those items labeled “easy open tear here,” I feel somewhat challenged. When I find it impossible to keep up with my husband, who walks quickly, I feel disabled. Worse yet, when I feel like I’m holding up my friends, due to my leisurely pace, I feel lame. However, what bothers me the most is when people swear at me, because apparently I am in their way moving too slowly. And yes this makes my feel disabled, but more so angry. When I lose my balance or stumble, I worry people may think I am drunk. I prefer they realize I am physically challenged. To me, being disabled just means that I am no longer capable of doing what I used to be able to do. To me, disabled is not a shameful word. Disabled is my reality. Next time, when asked I will raise my hand.
- Yes, that hurts! (cmtnyus.wordpress.com)
- The Gift of Play: Children With Physical Disabilities (children.webmd.com)
These ducklings triumphantly clambered up the steps, after several attempts, similar to the way CMT’ers struggle to climb stairs.