|Hello, bus. I'm going to try to welcome you to my world.|
Three years ago, I would have driven to this talk. I would have listened to music in the car, or listened to a book on tape. I would have made my own schedule. For the last two years, though, I've been having seizures, and that's meant I'm not allowed to drive.
The seizures are a result of the brain tumor and the surgery to remove the tumor. They can actually be a sign that things are going well: when anything changes in the brain--like the tumor shrinks--more seizures can be triggered. But seizures suck. I don't have any memory of the big ones--the seizure wipes out my memories from several minutes before--so my memories there are typically waking up in an ambulance and thinking, "Oh, fuck." I haven't had a big seizure since April 9, 2013, so I'm coming up on my first anniversary.
But I have smaller seizures--speech arrests--fairly often. I'm not going to describe them right now because I don't feel like it. They're frightening and distressing to me. They feel--metaphorically rather than physically--like a punch to the gut. Physically they feel nauseating. And those seizures mean that I'm not allowed to drive. There's a very good chance that I'll never be able to drive again.
I'll never be able to drive again.
It almost makes me tear up to write that, sitting here in the lobby of the Greyhound station. I haven't written much here about my seizures. I haven't written about them as a disability, even though they clearly are disabling. I am a person who studies disabilities in great depth. It's the focus of my scholarship, and I do a fair amount of activism around it, too. So why don't I want to acknowledge my own disability?
Fear, I think. And ego. Fear because the seizures are connected to the brain tumor, and the brain tumor is connected to my mortality. Fear because I don't want them to get worse and force me to reimagine my professional and personal life. Ego because I want to be a person who drives. "I'm not the kind of person who rides a bus," my ego announces. "It's unacceptable!" I feel ashamed to be a person who has to take cabs, or ride a Greyhound. Flying is, of course, perfectly acceptable, as is taking a cab to the airport. Those things can almost be prestigious, so I have no weird feelings there. But not being able to drive to the grocery store, or the bank, or a speaking engagement a few hours away, feels shameful. It's class based, of course, and based on my desire for "independence," for the ability to control my own movements.
I get that this is troubling, irrational, contradictory to some of my deeply held beliefs about accessibility, identity, and human value. I get it. I'm not defending this!
But I'm feeling it. And now I'm writing about it. First time, right? Here I am, feminist disability studies scholar, discussing my own disability. Discussing my fucked up conflicts, conflicts I'm going to need to address.
I guess now that I've launched into this, you might hear more about it.