Mel Baggs died. At the age of 39.
Please watch the video if you have any curiosity or familiarity with autism. I’m verbal…overly so. But the things Mel did in the video were all things I did as a child when no one was around. I think it annoyed my sisters a lot. It made my mom angry. And it was just sort of…not allowed after a certain age. I got yelled at and punished, but mostly just shamed for it.
When I’m at home, in my own space, and alone, I still do these things. Opening and closing doors. Popping the lid off a pen for hours. Feeling baking soda between my fingers. Humming. Watching the same video again and again. Playing with LED lights that change color and frequency. Tracing my fingers over the embroidery of a quilt. Constantly having a finger in my mouth, or sticking my tongue out when I am concentrating. Feeling myself completely of my environment and not something separate from it. That is my way of being. It is just that I live in a world where “doing” is what is valued.
When I got my diagnosis, people warned me not to talk about it, not with friends or strangers. I listened for a while, but it was just more of the same…stopping me being me to make others more comfortable.
So much of who I am today is conditioned by what is acceptable to other people. It was very painful and very lonely to grow up like this.
I know Mel didn’t fake it. So much of that is me. And so much of what I write is not for me but so that through words, the most limiting of all languages, I can communicate to the outside world of what is on the inside.
And for that I get seen as just odd, or annoying, or narcissistic, or whiny, or preachy. But everything I share is so you understand a little bit of what it is to be me. I’ve always felt like an an outsider. Like an alien.
Goodbye, Mel. Thank you for showing us you and speaking for us. I so loved your immense capacity for empathy and compassion for those who could not or refused to understand or reciprocate.
Check Mel out here.
I have to keep going, if only because I have a voice and I see so much that needs to be shared so that everyone else can see it too. Maybe something good can come of it.
From Mel’s Blog:
Usually, when people assume things about me, they’re wrong. My life is complicated, and it does not follow the standard stories that people expect either of disabled people in general, or of people with my specific conditions. Pretty much no matter what I say, it ends up creating assumptions that are inaccurate. I am not trying to mislead people, I just can’t tell my life story every time I say something about myself. Please be understanding about this. Every person is different, even a person with a collection of labels identical to mine is going to be completely different from me in a large variety of ways. For some reason, however, the blame always ends up being put at our feet as disabled people, when we aren’t what someone expected.