This is a post about some issues I encountered at someone else’s birthday party, which makes it inherently pathetic and self-centered. But then, this is a blog, so I get to be pathetic and self-centered once in awhile, right? I apologize up front. For the record, it was a fun party and any non-fun issues are strictly my own and not the responsibility of my hosts or friends. I was totally glad I went.
So, onto the story.
As I have mentioned here, my voice has not been the same since the surgery. Assuming that there isn’t further damage in the next surgery–if there is a next surgery (or from the cancer itself) I will get back about 70-80% of what I have. I’ve been going to an excellent speech therapist (it’s like singing lessons) and every few weeks there is some improvement.
But for all that, I am functionally disabled in the meantime. I used to have much more vocal power than other people. Now I have considerably less, and what is projected is harder to hear. That said, I am not the kind of person who wants to sit at home and be depressed about a disability or being in the middle of treatment. If I feel good on a given day, I should do something. There’s a Quebec saying that is something to the effect of “you have to live your life.” And so I am trying to figure out how to do that.
Since the surgery, I hadn’t been out to anything more than a dinner party, and even dining out has been kind of fraught because even moderate restaurant noise makes it difficult for my voice to be heard. It is easily masked. Carrie and I dined recently at Bombay Mahal and while she could hardly hear anything I said, I had an entertaining time watching her try to eat the “extra spicy” dosai she’d ordered, so that sort of made up for it. (The waiter said “have you had our food before?” she answered “yes, but I’d still like some extra spice.”)
Anyway, Saturday night was a party celebrating two of my friends turning 40 so I thought it would be a good time to give this whole outside world thing another try. Sooner or later I have to, so if not now, when? The party was held at a bar, starting at 8:30 and then migrating upstairs two hours later for dancing. I figured I can at least dance if I can’t talk, right? And I was clever–or so I thought. This whole being disabled thing means I’ve got to experiment and figure out something that works for me in the big bad normalist world. So I took some index cards and a sharpie, and came up with a series of stock phrases that I could flash at people, such as:
“How, how’s it going?”
“My voice is messed up so I made these cards.”
“Cancer sucks. I feel fine. Thanks for asking.”
“I don’t know yet. I’ll know more Monday or Tuesday.”
“Tell me how YOU’RE doing.”
“Yes, please. Water.”
“Great party!”
“Happy 40th birthday!”
“Tell me more.”
“That’s awesome/I agree/I’m happy for you.” (select whichever one is appropriate)
“That sucks/I disagree/That’s too bad” (select whichever one is appropriate)
“If you could hear me, I would have a clever 1-liner right now.”
and so on. I brought my sharpie and some more blank cards to improvise on the spot.
My hope was that with a little prompting, other people would talk and I would listen, aided by the cards. But two things happened.
First, people were self conscious about asking me stuff. So I tried to talk. Today I was incredibly hoarse as a result. I should know better. They were trying to be nice. And I do like to talk, so the temptation is great.
Second, it turns out I wasn’t the only disabled person at the table. In more than a few cases, each time a card came out, friends had to reach for their reading glasses in order to be able to see them. Foiled! Some disabilities, like farsightedness are “normal” but I obviously didn’t even consider them, since they are not my own. Others, like my voice, are “abnormal” and therefore marked. Though marked disabilities are equally unconsidered by those unaffected–I always hated phone menus that require you to speak; now they do not even recognize my voice as a voice.
As the disability studies motto goes, “someday, you will join us.” That is what is so difficult in thinking about anything like systematic accommodation. Bodies fall apart or are “absent” in different ways, and accommodations may themselves introduce new issues into play.
I still plan to get some kind of portable voice amplifier (or more likely, buying whatever is out there as a template for something more advanced that I help design). But first we have to have some decisions about my course of treatment. I don’t want to drop a few hundred bucks on something I won’t be able to use.
I am happy to report that I can still dance. If by dancing we mean “semi-rhythmic movements on a dance floor.” I was never very good at the whole “particular-body-part-in-a- particular-place-at-particular-time” thing.
——
Postscript: I learned that film critic Roger Ebert is a thyroid cancer survivor, though he’s had a particularly rough go of it. He’s written a few things about it, but they’re pretty sobering, since he no longer eats or speaks with his own voice.
I’m glad you got a chance to catch up on Ebert … I would have said something if I realized you didn’t know. His Nil by Mouth piece is great in so many ways.
He’s also inspiring, I think … he is full of things he wants to say, and he’s not going to let something like losing his voice prevent him using his “voice.” He gets my vote for Best Celebrity Tweeter … most of his stuff is links to other things, and he’s got a great eye for it. He’s also writing a lot online, because, as is clear, he has words inside him that need to get out.
Finally, to get the celebrity stuff out of the way, I also only just found out that Katee Sackhoff had thyroid cancer while making the last season of BSG. She had fewer problems than you or Roger, it appears … not sure of the relevancy, I just feel a closer to connection to thyroid cancer these days.
Which is why I want to thank you for your writing on the subject. I’m hoping it means a lot to you to be able to write … I can tell you for a fact that it means a lot to me, reading it, because it’s not just a story about a friend with a specific problem … you’re giving us something universal, and that’s a fine gift.
Coming late to this, but I wanted to say I’m so so so sorry that this happened to you, and to thank you for writing so eloquently about your experience. It is indeed an honor to be among the ranks of Roger Ebert and Katie Sackhoff. And they should be honored to have you among their ranks as well.
Thank you for this interesting meditation on “normal” and “abnormal” disabilities. (And for making me laugh out loud with your index card about the absent one liners). I’m sorry to hear about your health, Jonathan, and wish you all the best in your treatment.
Jonathan: thanks for posting this. That stuff about voice recognition not recognizing your voice as a voice–this is so much about technology’s creating normative bodies/voices/faces. There are cameras that don’t recognize Asian eyes as “open” (see http://www.flickr.com/photos/jozjozjoz/3529106844/ or google “racist camera) and refuse to take pictures as a result, and other cameras that literally don’t “see” black faces.
I love your formulation of the “absent” bodies. This is not to say that minorities and disabled people are the same, not at all. But that there is a narrow band of bodies that are “present” to technology.
I love the way that you describe yourself as having had “much more vocal power than other people.” And how! It was like a can of rhetorical whup ass that could be deployed. Not being able to deploy it is good and bad as you say.
Can you let me know what the Montreal phrase “you have to live your life” is? It sounds very useful.
Lisa