So, it happened again. Moebius syndrome ended up on television! Actually it did not end up on television, a really bad imitation of it did. It puzzles me that writers and medical advisors will go out of their way to “discover” these wonky diseases, then do a terrible job at them.
See her eyes? They would disqualify her from a diagnosis stat. One of two absolutely necessary diagnostic elements is the inability to move your eyes laterally, for heaven’s sake!
If you’re going to do it, at least do it write. Don’t exploit it then fail it.
And this doesn’t get into the question of… what does it mean that my rare disease is season finale worthy? Is it the weirdest, the worst, the most sensational someone thought of? Having lived with it, I have context. Others do not, I guess.
Next week is Face Equality Week. At first I kind of scoffed at that, because burnout, quarantine etc etc – but then I reassessed. I like it. I’m a bit perplexed as to what I’m supposed to do to “raise awareness” on all these various awareness days/weeks, beyone “hey! I exist!” – Face Equality is simple, powerful, meaningful and does a great thing in spreading the challenge. Yes, those of us with facial differences are in a position to advocate – but the challenge is also with everyone.
It’s just how we, as people, should treat each other.