Disability: literally “to be apart or away from ableness”, as compared to Inability: “without ability”. That distance makes all the difference. The schism felt between “disabled” and “abled” is ridiculous, put there by some Puritan ideal of stoic-ness, some idealized overbearing work ethic–work through your pain, your blindness, your hand, the bone cysts on your feet. Malformity ” To be badly formed i.e. unlike the majority of the population”; “Defect, deformity” – distance away from normality, from invisible rules put down by suppressed forefathers and oppressed foremothers, ruling what NORMAL or ABNORMAL–ACCEPTED or UNACCEPTABLE is 1500 years later.
I don’t know exactly what I’m trying to say, really–that we need widen our ideas of normality, that I’m tired of people giving me shit for taking the elevator to the second floor, that people need to start acting out of love and not fear, that I hate it when my roommate says “You mean you can’t do that? But it’s only… but it’s only… but it’s only…”
It is only my health, my self, my understanding and love for my entire being, that holds me back from unzipping that dress or taking that walk. Some part of me has chosen to twist my immune system, and I trust that once my body had a perfectly good reason for doing so. My dis-ease is another defense mechanism, the walls around my heart and psyche extending to my lymph nodes and lymphocites. On days when I can’t get up the stairs or on the shoes or up the good-love spirit that floats around us like water, on those days it takes strength to say “It is okay, I love you, it is okay, I love you”–in a way my disability has given me more spirit, more depth than I would have had if I was “well”. How many people say that to others? To themselves? And truly mean it? Let’s take a wild guess and say “Not nearly enough.”
It’s also an explanation–why my heart gets too big for me to hold it all, this longing for love of all kinds, read: why I was such a “weird” kid. While admitting disability/disease–especially at my age–is hard and tactless and scary, saying “I am a highly sensitive person who feels things way too much sorry for blahblahblah” is a bit harder. So for that, I am grateful to the Universe. Also, if it weren’t for the idea that movement is supposed to improve your joints (though it is hard as HELL some days), and my mild anemia meaning I eat like a pregnant woman, I would have a much harder time propelling myself to get things done. Pain keeps me grounded, pain keeps me in this world, and for that I am thankful.
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I learned about this day at Daisybones’ blog.
YOU can learn more about it atthis post.
and also probably at the But You Don’t Look Sick website.
