Thursday, March 20, 2014

Exploring my own disability. And my own ego.

I'm giving an invited lecture for Women's History Month this afternoon at Coastal Carolina University, a school a few hours away from Charleston. I'm really happy to have been invited, and I'm looking forward to my talk on zines and contemporary feminism--zines are so cool, and I'll get to show a lot of them and invite the audience to help me dig into them and consider their significance.

Hello, bus.  I'm going to try to welcome you to my world.
So I'm doing a fun and sort of prestigious thing:  keynote lecture.  And that's paired with something I've never done before, that I'm feeling torn about:  I'm riding a Greyhound bus to get there.

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.


  1. Oh, Alison. My heart goes out to you. I am certain that you will address these things in the graceful way that you have always done -- and with strength and courage and a brutal, beautiful sense of humor. I stand somewhere out in the audience, cheering you on, listening avidly and helping to hold you up in friendship.

    1. Thank you, Elizabeth! Your comments are always so heartening.

  2. First, I don't know what to say about the seizures except I'm sorry you have to deal with them. And while not being able to hop over to the grocery sucks, I don't think Greyhound is any less uncomfortable than flying coach. Both are crowded and yucky. You just get places faster on the plane and faster always seems better - faster travel, faster development, faster processing, faster thinking.... annndd we've just jumped down the rabbit hole.

    I am selfishly looking forward to your thoughts on this as I've struggled with the ableism as all things evil theory (& the associated therapy = ableism = evil). Is driving ableist? Maybe, but it's nice to drive your own car, leave when you want, crank the radio, and not deal w/the pervs on public transport, right? I think it comes down to independence and that is my greatest concern raising Grace - not that she will live outside the "norm" but that her disability may put her at greater risk and/or limit her opportunities to explore & live in the world. In a perfect world humans would graciously & generously assist when needed but that simply isn't true. I wonder at your experience, during a speech arrest? Sending love (and, off topic, hope to see you in July??)

    1. I'm ferociously protective of Maybelle, and on her behalf I'll argue against the accuracy of "independence" as a realistic assessment of life. We're all dependent, right? Just some of us are dependent in ways that are normalized so that we don't recognize them (I can't take care of Maybelle "by myself"--she goes to school! I can't see without glasses! I need medical insurance! Etc). If Maybelle needs to ride the bus because she can't drive, then I will fight to make the busses better, make them go to better places, make them more comfortable. I'm sure you'll do the same for Grace. But when it's ME, I feel differently.

      This didn't answer your question, but it's what I've got right now.

  3. HeY Allison I want to celebrate you and your openess this post. It is so much easier to study disability than it is to confront disability in our own being, or at least for me this is true. I have found myself shifting from a person making space for following with a disability to being a person saying hey! I need help+space and I have limitations! I have a disability! It's an enormous shift and one that I have to accept ( I say have because the consequences are so terrible) my limitations. It's a new way to live. It is a huge adjustment. I think you are doing great.


    1. Thanks, Devi! I appreciate you sharing your experience. It is an enormous shift--you're right. And pretending I don't have limitations doesn't actually make them go away--it just makes my life harder and makes my secrecy a toxic force inside me.

  4. Love and hugs and a ride, please call when you need one. The Citadel isn't far.

  5. not driving s.u.c.k.s. not driving in a small town without a transportation system? that bites the great big one.

    be joyous that you live in a vibrant city with a modern infrastructure!

    celebrate, truly, your ability to walk around your town, to ride your bike, to climb up the bus steps. get the pom-poms out and holler about how lucky you are!!! really.

    the idea of ableism is muddy for me. one can argue that it's ableist and (and class-ist) to tool happily, smugly, around on a tandem bike, oblivious to how damn hard that act is (even impossible) for others.

    there are so many interconnected aspects involving the logistics of basic existence. it's funny and ironic that I'm jealous of those who can ride a bike. but then I can still do stairs (slowly, holding on tight). when I get to the top, I feel pretty high and mighty if I do say so myself! many, many people would feel jealous of this ability; and at the same time, there are many others that would be cursing under their breath behind me for taking so long and getting in the way.

    relish how empowered you feel by the ***cans***. you can take a bus, you can walk, etc. the habit of small celebrations like this can make you feel pretty heady!!! a real dervish!!!

    and acknowledge, too, the opportunity to observe your surroundings and experience an adventure you wouldn't have had without your disability.

    do this. but also honor your right to rage and grieve. be honest with yourself. not driving does suck. it really sucks. embrace and inhabit all of your feelings. they are all valid. reject none of them. and then get on the bus, your eyes and ears open, and your head held high.

  6. Your posts are so wise and thought provoking, and the truth can sometimes suck. We make friends across these blogs and the interwebs - I appreciate your courage to share shat you feel and your courage to take the bus because what you have to share with the world is important. Keep on doing it.

  7. I'm so sorry to hear about what you're going through right now. I can only imagine how frustrating it must've been when you first found out about your disability. It's a life-changing situation, but I'm in awe of how quickly you bounced back after finding out. You're very brave for opening that up with us, Alison. Thank you so much for sharing that story! I wish you all the best! :)

    Jason Hayes @ DECO