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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 14 replies, 6 voices, and was last updated 7 months, 2 weeks ago by Kevin Schaefer.

    • Author
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      • #17859
        Kevin Schaefer
        Keymaster

        I went to a comic con this weekend, and on Saturday I took part in a panel about con accessibility. Often, cons and big events can be difficult for people with disabilities to navigate. As such, I was really happy to participate in this panel.

        Fortunately, this con is one I’ve been going to for years, and it has a very family atmosphere to it. I always go with friends, but even if I’m alone, there’s always someone around to help me. I have no problem asking people for help, and the space at this show is really easy to maneuver around.

        However, I recognize that large events like this aren’t as easy for everyone else. On this panel, we talked about issues that people face related to social anxiety, sensory overload, speaking up in large crowds, and many other things.

        What issues do you face when you attend large events with big crowds of people? Whether it’s a conference or something else, I’d love to hear about your experiences.

      • #17903
        Halsey Blocher
        Participant

        One of my biggest pet peeves at these types of events is how many people will step right in front of me like I’m not even there. And then they are surprised when I almost hit them. Elevating my chair helps, but it still happens. Fortunately, my friends and family are really good at spotting these people and stopping them so I can get through. They’re basically my body gaurds.

        • #17923
          Kevin Schaefer
          Keymaster

          I’ve definitely run into this issue before. It’s amazing just how oblivious people are to their surroundings, and how everyone is so busy staring at their phones that they don’t even notice other people. It definitely helps to have friends and family with you, but this is an important issue to talk about. Thanks Halsey!

      • #17904
        Ryan Berhar
        Participant

        My voice not carrying is a big barrier. In most events, I can’t really be heard.

        • #17924
          Kevin Schaefer
          Keymaster

          Yep, this is definitely an issue we talked about. We’re talking about having a space for our con that’s essentially an escape room for people to get away from the crowds. I’m rare in that I’m a person with SMA who has a pretty loud voice, but I know this is a struggle for a lot of people in this community. Thanks!

          • #17931
            Ryan Berhar
            Participant

            What makes it worse is that it’s an invisible part of the disability, so I sometimes worry that people think I’m ignoring them. No idea if anyone actually thinks that, but it concerns me.

          • #17934
            Halsey Blocher
            Participant

            I’m more like Kevin, but I have a lot of friends who  struggle with being heard. One of my friends can’t speak above a whisper, and I’m always terrified she’ll say something to me that I won’t hear.  I can’t imagine people think you are ignoring them. It can be hard for most people to hear or be heard in a loud environment.

          • #17948
            Kevin Schaefer
            Keymaster

            That’s definitely a frustration for a lot of people. Thanks for bringing this up.

      • #17944
        Kelly Miller
        Participant

        I totally have trouble with my voice being loud enough. I can’t talk during a concert at all except when they have a decent break between songs. And, don’t even get me started on restaurants! I try to choose ones that don’t have a lot of noise, but unfortunately, they are usually the ones that aren’t as popular. The worst is when Jack & I go out with my friend who has SMA who can’t talk loud either. Both of our husbands end up translating for us!

        • #17950
          Kevin Schaefer
          Keymaster

          Sorry, but that needs to be a comedy sketch! Seriously though, you and Jack should record this sometime to point out this issue to restaurants. At least with concerts, everyone has trouble speaking up and hearing themselves. Restaurants though, can do a much better job accommodating people with disabilities. Even just a couple quiet rooms without loud music would help.

      • #17949
        DeAnn R
        Keymaster

        Similar to Halsey, my big issue is people being oblivious to the fact a wheelchair is trying to get through.  I especially love when people stand around in a group chit chatting not leaving room to get around.  Usually I catch someone else’s eye in the group and they’ll tap them on the shoulder for me.  I have been known to nudge someone with my chair though.  Typically I follow it with, “Oh sorry, thought I could squeeze through.”

        Another issue is in venues with general seating like at a concert or game, and the people in front of me stand up.  Of course then I can’t see, so I usually try to work my way up front.

        • #17951
          Kevin Schaefer
          Keymaster

          Heh, good comeback. Yeah I occasionally have people bump into me. It’s annoying, but it doesn’t happen as much lately.

      • #17952
        Kelly Miller
        Participant

        I don’t know Kevin, I guess I always thought it was my problem, not the restaurant’s. I could go somewhere else. Of course, they would rather me stay there instead, so maybe they could do something. We have tried to sit on the patio before, but Houston presents a unique problem with that. We don’t really have restaurants on quiet streets or patios on the back. All of our restaurants and stores are on what we call feeders – everyone else usually calls them access roads. I’m saying seriously, everything is on a feeder which runs alongside major interstates & highways. Because of this, the patio is very loud from traffic on the highway. You really don’t think about it when you’ve been here for a while, but it’s definitely a problem for me and my friend. And, there’s absolutely no lull time in the traffic because it’s a major thoroughfare that has 24/7 major traffic!

        Deann, you are so nice! When I “accidentally” nudge people, I totally look at them like it was their fault. Ha ha, it’s a good thing this forum is only for us & things are kept confidential. Oh wait… they are confidential right? Probably should have asked that before I disclosed!

      • #18583
        Yvette Haas
        Participant

        I usually avoid loud and/or crowded places and/or events because navigating crowds and not being able to communicate over noise gives me anxiety…. Has anyone here tried using a portable voice amplifier? I have one that I like, but there are many available online for $20-$30. I mostly use it if I am going for a longer (an hour or more) with just the driver, so we can have conversations easily. When there is someone else in the van, they usually sit in the back with me, so I just chat with them, and when it’s a short drive, I don’t mind talking a bit louder or not talking. This is great because I can have a full conversation while talking at a volume below my normal speaking voice! I’ve used it a couple of times at outdoor festivals because my booth was set up just a few spaces away from the music stage. It especially helped there with the strangers because while my parents were able to sit behind the table with me, and lean in when necessary, the shoppers had to stay on the other side of the table. I’m still not a fan of huge events, but this definitely helps (when I remember to bring it with me) =)

        • #18594
          Kevin Schaefer
          Keymaster

          Brianna brought up the issue of being unable to amplify her voice in several of her columns. Your tip about the speaker you use will be helpful to others here. Thanks!

          My voice is one thing I’ve never had to struggle with, fortunately, but I know many people with SMA who can’t amplify their voices. Though concerts are tough for anyone. Thanks for sharing your perspective.

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