SMA News Forums Forums Our Community Adults ​With​ ​SMA SMA Is A Key Part of My Identity, But It Doesn’t Define Me

  • halsey-blocher

    Member
    March 19, 2019 at 9:19 pm

    This is a great point Kevin! I met a young woman at the Cure SMA conference once who told me she didn’t want to be cured because SMA was who she was. I was never able to relate to the statement. SMA is definitely a big part of who I am, but it’s not all that I am. Even if I was cured, SMA would always be a part of my identity. A cure would only add to my identity, not alter it. And there are so many things that influence who I am! They are all an important part of me, and SMA is just one piece of that puzzle.

    • kevin-schaefer

      Member
      March 20, 2019 at 1:00 pm

      Thanks Halsey!

      Yeah, I think about this topic quite a bit. Honestly, I have a hard time imagining what my life would be like without SMA. It is such a big part of who I am, and I enjoy writing about it, meeting other people with SMA, and being a disability advocate.

      At the same time, there are plenty of other things that make me who I am. It would be nice if people like the person who I wrote about here would understand this.

      • halsey-blocher

        Member
        March 20, 2019 at 9:25 pm

        So often people look at us and only see the wheelchair. While it’s an important thing to acknowledge, it’s far from the only thing! People who can look beyond are rare and worth holding on to!

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