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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 2 replies, 2 voices, and was last updated 1 month, 2 weeks ago by DeAnn R.

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    • #23979
      DeAnn R
      Keymaster

      Have you ever had your opinion dismissed because of your disability? I have and it’s frustrating. Of course they wouldn’t admit it if you call them out on it. But I know if I wasn’t disabled I wouldn’t have to try nearly as hard to get my point across. Despite that I don’t let it stop me from expressing my viewpoint. My opinions are just as valid as anyone else. In fact many times I feel my disability gives me a unique perspective.

      I may not be worldly in the physical sense. That doesn’t mean I’m not worldly. Not only did I attend college where I met individuals from around the globe, I also keep up with current events. Technology has brought the world to my fingertips. With the click of a button I can be communicating with my colleagues across the globe and also learn about the latest happenings. So, although I’m not a globetrotter my reactions are credible.

      My experiences also play a part in validating my perspectives. Having been hospitalized on more than one occasion I’ve seen the workings of the healthcare system. I rely on government services, so I understand the good, the bad and the ugly there too. Because I need assistance with some of the most basic needs in life I’ve learned to work with a wide range of individuals. All of this has made me who I am. An individual whose opinion counts.

      All I ask is that if I make an effort in understanding where they’re coming from, they make an effort in understanding where I’m coming from. Any advice on how to do that? For now I’m just continuing to voice my opinion in hopes it won’t be dismissed.

    • #24002
      Alyssa Silva
      Keymaster

      If I had the energy, I’d write yes in all capital letters 100 times right now.

      It is the most frustrating and, quite honestly, a constant battle I sometimes feel I’ll never win. There have been instances where I’ve stated an opinion to a group of people, got no response, but then 5 minutes later someone else says the same thing and everyone reacts. It’s really disheartening when I’ve worked so hard at the person I’ve become only to have people dismiss my voice.

      I don’t know that I have advice on how to make people understand. Sadly, some people will simply never get it. But that shouldn’t stop you from voicing your opinions. There will be people who are willing to listen, and those are the only ones that truly matter.

    • #24003
      DeAnn R
      Keymaster

      I’m so glad this resonates with you Alyssa. I’ve had so many of those ‘didn’t I just say that’ moments too.

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