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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 Dennis Turner.

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    • #23616
      DeAnn R
      Keymaster

      When I participated in the Courageous Conversations panel yesterday there was a great question that I’d like your perspective on.  Here’s the question: “How is it best to make group plans knowing there are people in wheelchairs?  Example:  Everyone, wheelchair and non-wheelchair, is together and realize it’d be fun to go do  *insert activity.  Then people start to realize it’d be difficult for the activity to occur if someone in a wheelchair wants to join.  Should we blatantly say in the group, “Rob, how can we make sure you’re a part of this?”  Is that calling out Rob’s disability too much?  If the discussion just drops because people don’t want to offend Rob or call out his differences, does that call him out even more?”

      On one hand I do feel left out when plans are made and accessibility is an afterthought or not thought of at all.  On the other hand I don’t want to feel obligated to go just because special accommodations were made on my account. I would just suggest be mindful when making plans to be as inclusive as possible without making a big deal about it.  However you approach it with the individual, the one thing I would not suggest is making plans you know aren’t accessible and not telling the person about the plans as to not hurt their feelings.  In all likelihood we could come up with an alternative venue or participate at least partially.

      What are your thoughts?

    • #23627
      Crystal
      Participant

      I’d much rather be involved in the planning of activities even if someone has to call out my disability. I know what works for me and what is worth it for me, you know?

    • #23629
      Halsey Blocher
      Participant

      It’s certainly fine to do things that disabled friends can’t do from time to time. We understand that there are some things we just can’t do. However, if you’re planning something that you want a disabled friend to be able participate in, just ask them what they need. I don’t consider that to be calling unnecessary attention to my disability. I really appreciate when people make the effort to include me, and the best way to do that is simply to ask.

    • #23631
      Alyssa Silva
      Keymaster

      Yes, I pretty much have the same sentiments as Halsey and Crystal. To add, I’d feel hurt if my friends planned something special (birthdays, special occasions, etc) that aren’t accessible but that has never been the case for me. They are super accommodating and always get my input as well. While I don’t expect this from them, it’s nice to know that I’m wanted and included.

    • #23641
      Dennis Turner
      Participant

      Be direct. Ask me. Also don’t assume i can’t do whatever activity and so not offer it up as a possibility, i won’t be able to kite surf, but i might love watching friends try.

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