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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 4 replies, 4 voices, and was last updated 2 months, 2 weeks ago by DeAnn R.

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    • #23502
      DeAnn R
      Keymaster

      In another post I mentioned I’ll be participating in a courageous conversations panel.  One of the questions being asked is, when has your condition/disability been an advantage for you?  This is a tough one for me.  I don’t think they’re talking about “disability perks” do you?  I’m thinking my disability has taught me patience and empathy therefore I have a better understanding of others and their situation.  What’s your take on that question?

    • #23509
      Lupa F
      Participant

      I don’t know that I could say whether it gave me anything emotionally that I might not have otherwise had. I’d like to think I’d be as patient or understanding regardless of disability.

      I have had several “perks” from being disabled though.

      In high school, my last 2 years I was allowed to leave classes 5 minutes early so I could walk to my next one without anyone else in the hallways so I wouldn’t be knocked over (I only started using a scooter full time when I went to college).

      I was allowed to take the SAT at my school rather than an official testing site and was given a bunch of extra time (which I refused to use). My guidance counselor trusted me so much he let me set up the whole thing and moderate it myself.

      In college, I was given the handicap room at my dorm. It was usually given to seniors as a perk as it was 2 separate rooms with its own bathroom rather than a shared suite with 4 people. I got to use it all 4 years.

      I got my last job from a minority program at my company. They brought out about 100 minorities to a job fair for the company where we got to interview with all the different departments. I got a number of offers around the country from it.  It was a bit strange being classified as a minority as a white male (and I felt a bit bad when the coordinator of the event told me I was by far the best qualified person there for most of the jobs, oops). It was a fluke that I got invited at all. I was contacted by a manager at the company for a job and when I was talking to her I mentioned it was hard for me to travel because of my disability and that’s when she told me about the event and signed me up for it.

      And handicap parking is always nice, mostly for the space for me rather than the distance.

      • This reply was modified 2 months, 3 weeks ago by Lupa F.
    • #23514
      Alyssa Silva
      Keymaster

      I think it has also made us more prepared for all of life’s curveballs. For example, COVID-19. While I am nervous and stressed, people are in a frenzy not knowing how to handle this type of situation. Not much in my life has really changed because life with SMA has better equipped me for times like these. I hope this makes sense!

    • #23533
      Crystal
      Participant

      SMA has given me the ability to laugh in the toughest times, and that has taught my younger brother to do the same. Also I don’t know how creative I’d be if I hadn’t always been forced to be creative to fix problems caused by SMA. And since I don’t really have the ability to be rambunctious, I’ve always been an observer and I understand people more than others, which not only helps me communicate with them but also helps me write better characters.

    • #23601
      DeAnn R
      Keymaster

      Thanks for your input!

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