-
Identifying with MD and that right terms to use
What terms do you prefer people use when discussing your circumstances with Muscular Dystrophy? Do you feel offended when others use “disability first” language when talking about you? Do you relate more with the term chronically ill rather than disabled? Have you ever been corrected by an able-bodied person when using “disability first” language? When talking to others about Muscular Dystrophy do you refer to it as a disease, illness, disability or all of the above?
-
4 Replies
-
When people ask me, I simply say I have muscular dystrophy. I would not use the term disabled and usually I clarify because even though I say muscular dystrophy people immediately think MS because in they are thinking it is a more normal later in life illness. But I just tell people exactly what I have and I figure by seeing me move and walk they will understand the level of disability because we are all so different anyway.
-
I like your method of explaining your life with MD and how individual it is. The obstacles and limitations we all experience are different depending on our lifestyles. Like you, I don’t mind explaining my life with MD to others that are curious and respectful.
Why do you think you don’t prefer the term “disabled.” Do you feel like you’re not disabled enough or that the word doesn’t portray your life with MD accurately?
-
I think saying I have muscular dystrophy goes deeper and says more. I have said I have a disability if I think the situation is best for that, such as accessing somewhere. But if someone sees me with my cane or walking and asks what up if I say I’m disabled they really haven’t heard anything. I can say I have MD and they can see as I walk or move or just live life what might be Limitations. After all, everyone that says they are disabled probably has very different needs anyway. It’s vague and only experiencing can give the full picture.
-
I never really thought about it that way but you’re absolutely right. I realize now that I do the same thing. Saying that you’re disabled when someone asks you specifically about your circumstance isn’t really an answer and can spark a whole new set of questions.
Log in to reply.