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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 2 replies, 3 voices, and was last updated 1 month, 2 weeks ago by Mike B.

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      • #20950
        Brianna Albers
        Keymaster

        Happy Tuesday! My column for October is about ableist encounters. I’ve experienced my fair share over the years, but recently, there have been some that really stuck out to me. Between the comments themselves and how, when I ignored them, the person said it again and again, as if they needed to know that I heard them …

        I try to assume positive intent. I really do. Whenever I express any sort of frustration or discomfort, my parents say I’m reading too much into things. But it’s hard sometimes. Mostly I just wonder why people think those kinds of comments are appropriate. It doesn’t matter if they’re from an older generation — you don’t treat people that way, and you definitely don’t say things like that in public.

        Do you struggle with ableist interactions?

      • #20966
        Ryan Berhar
        Participant

        I totally understand where you’re coming from. Even though they likely have positive intentions, it’s still frustrating.

      • #20980
        Mike B
        Participant

        Ignorant comments like those sound like people just wanting to talk about their own medical condition, as they make your circumstance about them. Sure makes me appreciate a genuine nice nod or smile.

         

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