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  • What is your relationship with the term “disability” & “disabled?”

    Posted by jodi-enders on November 15, 2023 at 6:45 am

    What is your relationship with the terms “disability” and “disabled?” 

     

    Myasthenia Gravis News’ columnist Shawna, in the column https://myastheniagravisnews.com/columns/what-does-living-with-disability-look-like/, opens up about how they approach and think about this word that is often the center of controversy with non-disabled people. That is because many who have not experienced any physical limitation themselves tend to have a perception in their mind of what disability looks like.

     

    But as all of us with Myasthenia gravis (MG) know, disability and being disabled presents itself in a wide variety of ways, both internally and externally. It is an experience that will be perceived differently by everyone who experiences it. 

     

    What is your unique experience with disability? Is it a term you like and use for yourself? Do you experience disability but do not identify yourself as such to others? 

     

    What stereotypes have you heard and felt from others about what it means to be disabled?

     

    Is there an alternative way you choose to describe your limitations?

    jodi-enders replied 4 months, 1 week ago 2 Members · 2 Replies
  • 2 Replies
  • Bambilin

    Member
    November 15, 2023 at 2:37 pm

    I’m becoming very conscientious of my disabilities as I’m 81 and have had MG 5 years. Being obese isn’t helping either. I got a stand-up walker earlier this year and it has helped with my mobility immensely. I have a lift chair that’s wonderful. I have a seat in the kitchen where I can rest while waiting on the microwave, for example. I work in 5-10 minute intervals, resting in between. My house is on one level with laminant floors that reduce fall risks. I have grab bars at front and back doors to help me up a couple of steps. Also in my shower with a seat. Installed Kohler toilet seats that duplicate handicapped toilet height. Disposable underware helps with mestinon diarhea side effects. Adaptation increases my functionality, lessens my dependence, and improves my safety.

    • jodi-enders

      Moderator
      December 4, 2023 at 7:41 pm

      Thanks so much for sharing all of those accommodation ideas!

      • Jodi, Team Member

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