All of us with SMA are used to those ignorant, cliche comments. “I wish I had one of those” or “got a license for that?” Although they get old, I don’t take offense, because I recognize that there’s no ill intent. However, there is one thing that does upset me—when people talk directly about me to whomever I’m with. As if I can’t respond to them or even hear them. This doesn’t happen all that often, but when it does, it aggravates me. Do you guys experience this? Does it upset you too?
That’s a bit of a tricky one to navigate Ryan. It used to annoy me a little, but I don’t want to go around being or staying annoyed about other’s ignorance or insensitivity. That said, I never had a problem speaking up. “Ahem, I’m right here.”
If you are regularly with a group of people, friends, family, or caregivers, let them know this bothers you when people do this to you. Tell them how you’d like them top handle it. Matters would be made much worse if someone you’re normally around complicates things by responding to the person on your behalf. Let your regular companions know a simple, “Ryan is right here and certainly capable and willing to talk to you himself” or similar should solve the problem. You will never fix the social consciousness of people, especially strangers. Making the people you’re normally around aware of how you’d appreciate them handling this will help those who cross this unfortunately invisible line.
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