Recently a date asked me, “When did you become politically disabled?”
This is a good question. I like this question more than the seemingly endless stream of microaggressions people insist are “well-meaning.” What happened to you? and But you’re so young! These questions remind me of the forms, of the bureaucracy, of the plans I had for after I was twenty that got derailed by being “permanently and totally disabled” and an “adult disabled child” which is the language of the state that I periodically have to apply to myself if I want things like health care and money for food.
Even after I had forms that stated I was “permanently and totally disabled”, there were times when I would not have used that word. I edged around it. It seemed like an abyss that I could not crawl out of. I hoped that maybe if I did not use that word, there would be some dreadful mistake (or better yet, a cure) and then all of this would go away. This world of doctors and “normal” blood tests even though I felt like a ghost trapped between realms.
Somewhere, though, I stopped seeing myself as The Only Ghost. I stopped seeing being disabled as the worst thing ever. I stopped waiting to be able to find meaning in my life.
Don’t get me wrong. There is still an ongoing process of grief for the things I wanted to do but cannot. Sometimes because of institutional ableism, as per the social model of disability. Other times, though, because sitting upright to type at this laptop is harder now than it was when I was twenty. My hips hurt, my hand hurts, my brain fogs.
Fibromyalgia, I was told upon getting my first “physical” diagnosis, is not a degenerative condition. These days, it is the continued loss of things I have forged into my new identities that scare me.
Yet I am also more used to dealing with fear. Not because I’m particularly special or gifted, but because I have so much of it. Welcome to having an anxiety disorder and PTSD, and also laying awake thinking: What will happen if I lose my health care? What happens if this test comes back positive? What happens if it comes back negative, and we still have no real clue what is going on with my body?