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    • #17225
      Jodi Enders
      Keymaster

      My column published this morning discusses the concept of ableism and its effect on our emotions. Ableism is a form of culture that involves a shared preference for healthy, non-disabled people. In most geographic settings, it is a reality exemplified by many situations that fail to accommodate disabled folks. Examples include restrooms that aren’t available in public spaces, grocery stores that don’t provide mobile chairs, and businesses that don’t provide enough accessible parking.

      When we live with an invisible illness, people often judge us for how we go about managing our disease, which is crucial for our survival. For instance, we notice the expressions of disapproval on people’s faces when we use a store’s mobile assistance carts and then stand up to reach for an item.

      Discriminatory behavior can cause those with disabilities to hide their illnesses even more than we already do and neglect our self-care, triggering depression. Toxic popular culture that discriminates against disabled individuals can drive us to deny or ignore our disease. We may stop taking care of ourselves because we are ashamed or embarrassed.

      What situations have you experienced that remind you we live in an ableist culture?

    • #17242
      Thomas Lee Clark
      Participant

      I always tried to hide these things. Especially physical inabilities. My elderly aunt lived with us at the time and gave no quarter to pikers and she would speak her displeasure. I tried to keep up the front, worked every day and came home exhausted only to hide in the garage in a lawn lounge chair waiting for darkness when my eyes could relax more.  Glad those days are behind after my thymo operation. ALMOST NORMAL. 

    • #17264
      Arlene DeLand
      Participant

      I have difficulty walking from a serious auto accident, degeneration of spinal chord and pain and weakness from MG.  Since my near fatal accident in March 2017, I have lost relationships with people who get bummed out hanging out with people who are disabled.  One former very close friend said she wanted to be with friends who make her happy; another could not deal with the emotions that would surface when she was with me.  I am learning about the impairment on the body that occurs with MG from my new PT who is wonderful.  I am learning to take breaks when I am tired and learning to accept myself through the Myasthenia Gravis News.

    • #17306
      Amy Cessina
      Participant

      I usually don’t want people to refer to me as disabled because technically I don’t think I am. There is such a gradient of severity in our disease I think I’m ok for the most part.
      I have a niece that is very disabled and I see what strangers put my family members  through.  Sometimes I’m flabbergasted at how they are treated with handicapped parking and at their church and in restaurants when their daughter makes noise. Invisible or not disability makes others uncomfortable and even brings out the venom  inside some people. I don’t understand human nature perhaps and I don’t really care to try with some.

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