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  • Discussing SMA Pride and Disability Language

    Posted by kevin-schaefer on August 11, 2021 at 7:00 am

    Hey everyone! Hope you’re all doing well.

    Check out my latest column here. I don’t know if you all have seen, but there are discussions and debates going on in the SMA community about what to refer to this month as. While August is traditionally referred to as SMA Awareness Month, some prefer to rebrand it as SMA Pride Month. I explain this topic in more detail in my column.

    Let me know what you think about this subject. Do you have a preference for what to call this month?

    losmi replied 2 years, 11 months ago 6 Members · 5 Replies
  • 5 Replies
  • tracy-odell

    August 11, 2021 at 7:37 am

    I think we can move to “pride” now.

  • deann-r

    August 11, 2021 at 8:44 am

    Great article Kevin. I also think it can be whatever you want it to be. Maybe it should just be SMA Month. All I know is we don’t need a divided community, especially if it’s over a label. As we all know labels don’t fit everyone so we shouldn’t force it.

  • alyssa-silva

    August 11, 2021 at 9:14 am

    Great job with this column Kevin! I like SMA Pride, but I also feel it shouldn’t be forced onto others. We’re all at different points in our journeys, so this is something I think we’ll have a wide array of opinions on.

  • lupa-f

    August 11, 2021 at 9:59 pm

    I’m sorry, but “SMA Pride” is ridiculous. It makes it sound like you’re celebrating a disease that kills hundreds to thousands of children a year and severely disables many more. Reading recent articles there seems to be some trend to try to normalize SMA as a benefit (“it makes me unique!”) while ignoring all the people it has killed and families it has devastated.

    I have no problem with including SMA as a part of a greater awareness of disability issues, but singling it out as if it were a good thing is crazy.

    I’d hope we’d all like to see SMA gone some day which makes it completely unlike what other Pride celebrations are aiming for.

  • losmi

    August 13, 2021 at 3:39 am

    When I communicate with people online I like to write long messages, so I can explain my attitude/stance, so I can be sure (so I can try to be sure) that nobody is offended etc.

    I don’t have the time to do that right now, but I just wanted to say that I agree with what Lupa said.

    It seems that people suffer so much from SMA (which is understandable, I know I do) that they can’t deal with it, and then they start lying to themselves and rest of the world how SMA is actually not a bad thing, how it should not even be called a disease and so on.

    This is very sad.

    There is one thing I disagree with Lupa with: this is not just in recent articles, this trend exists for quite a few years now, and unfortunately we are probably going to continue in this direction and this crazy lie is going to become the standard, and I fear nothing good comes out of collective lying, collective delusionment (I am pretty sure “delusionment” is not a real word :).

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