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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 4 replies, 3 voices, and was last updated 3 weeks, 1 day ago by DeAnn R.

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      • #21360
        DeAnn R
        Keymaster

        Recently I took part in a community disability panel. Check out the discussion here. Raising awareness about disability in the community being the main focus. Because the panel includes a range of disabilities, I found it very interesting. Even though I knew about the discussion ahead of time, I didn’t get confirmation until the day before, and didn’t have the correct questions, so felt a little unprepared. So, ignore all the “um’s.” Despite that I feel I made some good points.

        One panelist had a negative experience growing up. Overall my experience in the community has been positive. I do feel community support as a kid outweighs the support I get as an adult. Two areas I feel need improvement are transportation and housing. What has your experience been in your community?

        Disability misconceptions is a topic we could talk about for hours. One misconception discussed is that if you have a learning disability you must be dumb. Obviously not true. That misconception bodes true with physical disabilities as well. I pointed out a lot of times people think it must be nice not to have to walk or get the perks like good parking. Believe me, I’d trade the perks in a heartbeat. Another misconception is I must be miserable. Not so in my situation. I have a good life. What are misconceptions we didn’t talk about?

        Even though we didn’t dive deep into the disability discussion, it’s a start.

      • #21379
        Alyssa Silva
        Keymaster

        Another misconception I’ve experienced firsthand… unfortunately… is that I’ll never surmount to anything in my life because I’m disabled. I’ve always had this innate need to prove myself to others for this exact reason. People see a person in a wheelchair and automatically assume they’re incapable. It stings, for sure. But, hopefully by proving myself— through education and awareness— I can help dismantle this way of thinking.

        • #21390
          DeAnn R
          Keymaster

          Very true.

      • #21380
        Halsey Blocher
        Participant

        Another misconception – similar to the one you mentioned about learning disabilities – is that people with physical disabilities always have learning or cognitive disabilities. I have on several occasions been lumped into groups with these people just because I’m in a wheelchair. I have many friends with these types of disabilities and they’re great people, but we have very different needs.

        • #21391
          DeAnn R
          Keymaster

          Well said.

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