Struck In The Face With Ableism

I want to thank David M. Perry for calling my attention to something distressing last night.  It both sickened & shocked me, but then really as much as it “ground my gears” also had me examining my own thoughts & attitudes towards the two rare diseases I’ve been living with for so long.

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HOT BUTTON: Hero Worship, Inspiration Porn, Pedestal Propping, & Tokenism

I’m not going to dance around this subject any longer.  It’s something I’ve sat with & ruminated on for years. It has caused so much ambivalence & mixed emotion for me at points.  I preface this post with an important distinction from most sources of this “trend” or “problem”  I see circulating in media & cyberspace.  People are being sincere in their views in sharing why they view me as an inspiration. I see this because quite a few of them actually knew me before my illnesses were apparent (or as outwardly so) & also know me after.  (I know they see me, & all of me).   Others have known me since I was very young & grew up with me. Some of these people may have never even known (until my need for transplant) that I was struggling with two rare diseases for most of my life. They admire me for other things than my advocacy & fight.  So when they say I’m inspirational they don’t mean it in a placating or demeaning way. That is why, while I understand the backlash against inspiration porn, I focus on the intent of of the message from the person saying those words to me & our relationship to each other before I even begin to open my mouth…

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