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    • #28888
      DeAnn R
      Keymaster

      Hey guys! On an upcoming podcast with Kevin Schaefer we talk about one of Halsey’s latest columns, “Sharing Our Stories With the SMA Community’s Next Generation.” Not only does she talk about the changing landscape of SMA now that treatments exist, she also shares why it’s important to keep telling our stories. I thought she had an interesting perspective. Her viewpoint makes a lot of sense. It’ll be interesting to see what transpires with SMA treatments and what future generations glean from the past. As Halsey concludes, “I believe with my whole heart that the future is bright. I pray that the stories we tell are enough to preserve the qualities and memories that are worth keeping for the generations to come. I hope they take the torch of the legacy our community has built, and I hope they run with it — literally.”

      What did you guys think of this article? Are you hopeful about the SMA next gen? I love hearing your perspectives.

    • #28892
      Lupa F
      Participant

      The idea that something would be lost by eradicating a disease seems a bit strange. Do people who have had covid look sadly at those that haven’t had it yet and wonder how those people cope with not having to live through it?

      Are there people that are like: it sucks that polio was eradicated because “living with (polio) helped teach and enforce empathy, resilience, gratitude, community, creativity, humility, spirituality, patience, and maturity, and these qualities are key components of the adults we became. I don’t want future generations to endure the challenges we’ve faced, but I wonder what will foster these traits in them if not (polio)?” You can substitute almost any bad thing in there and have the same sentences, but then you’re essentially advocating that bad things should happen to people.

       

       

       

      • #28893
        Micaela MacDougall
        Participant

        I don’t think that’s exactly what Halsey was saying.  The context of that quote is,

        “My heart leaps with joy at the sight of children with SMA who are reaching milestones that were unfathomable to my friends and me when we were kids. These kids might not have to undergo as many surgeries or spend as much time hospitalized as we did. They might not need to rely on medical equipment to breathe, eat, talk, and walk for them. And that’s incredible.

        But while those experiences sometimes resulted in hardship and heartbreak for us, they gave us some valuable things, too. Living with SMA helped teach and enforce empathy, resilience, gratitude, community, creativity, humility, spirituality, patience, and maturity, and these qualities are key components of the adults we became. I don’t want future generations to endure the challenges we’ve faced, but I wonder what will foster these traits in them if not SMA?”

        Halsey fully acknowledges the tremendous gains of eradicating SMA.  At the same time, she is asking whether something could be lost in the process, even at the same time as much more is gained.  Even when the gains clearly outweigh the losses, it is still honest to acknowledge that the losses exist.

        For my part, this idea resonates with me.  As difficult as life with SMA is, I know that I would be an entirely different person without it.  Without SMA, I would not have learned how to sit entirely still and look at a single painting in a gallery for half an hour.  I would not understand how interdependent humans are and how much value dependence and community bring to my life.  I would not have the empathy that I do for other marginalized groups – for people of color (who are also treated differently because of how their bodies look), for LGBTQ+ people (who know what it’s like to have to break free of other people’s expectations of your sexuality), for those living in poverty (who are intimately familiar with exhaustion and fatigue from living hand to mouth).

        Insofar as SMA is a disease, I rejoice with those who no longer have to suffer its symptoms.  Insofar as SMA is a disability, I rejoice in the person I am because of it and in the communities it has connected me to.  I believe it is possible to live in that tension.

        • #28897
          Lupa F
          Participant

          “Without SMA, I would not have learned how to sit entirely still and look at a single painting in a gallery for half an hour. I would not understand how interdependent humans are and how much value dependence and community bring to my life. I would not have the empathy that I do for other marginalized groups – for people of color (who are also treated differently because of how their bodies look), for LGBTQ+ people (who know what it’s like to have to break free of other people’s expectations of your sexuality), for those living in poverty (who are intimately familiar with exhaustion and fatigue from living hand to mouth).”

          But SMA doesn’t make you do any of those things. Why couldn’t you do those things if you didn’t have SMA? None of them are dependent on not having working muscles. There are plenty of people who do the same things without having SMA.

        • #28898
          Micaela MacDougall
          Participant

          Because I know myself – the kind of person I am and the kind of life I lead.  I firmly believe that without SMA I would be overly focused on productivity and success, and neglectful of beauty and community.  I’m not trying to speak for anyone else, just explain how Halsey’s ideas resonated with me, how I can see that my suffering has changed my life, both for the worse and for the better.

    • #28903
      DeAnn R
      Keymaster

      I think that’s why our stories are so important. No one wants disease, or bad things to happen. However there’s a lot to learn from it and it is a provides a unique perspective. When I was talking with my nieces about distance learning one of them said, “You just don’t know what it’s like.” She’s right, I don’t, but because of my disability I know you can get through hard things. Do you need to have a disability to know you can get through hard things? No, of course not, but I think it’s been easier for me having had this experience. Down the road they’ll be able to use their experience with distance learning to shape how they react to future situations.

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