Friday, December 7, 2012

Some Rhodes Reflections

I haven't written on this blog for several months... but that doesn't mean it's been an uneventful fall. Far from it, both in terms of listening-related news and personal developments. I've been able to make some astounding progress with my cochlear implant, but perhaps the most telling factor about how "normal" this hearing business has become in my life is how I've felt gradually less compelled to write about all the breakthroughs. Not that they haven't been big breakthroughs - some of them have blown my mind. To summarize before I get to my bigger news and the things I'm now mulling over:

In October, at the suggestion of my auditory verbal therapist after seeing my most recent audiograms from June, I returned to my audiologist for an experimental remapping. I say experimental for two reasons: because it wasn't a remapping that was called for within my usual appointment plan (technically, I didn't need to go back until June 2013) and also because we were trying something very different from all the mappings I'd had up to that point. Basically, since I was born with a higher-frequency hearing loss, those frequencies have been the most curious/disruptive/difficult for me to get used to with the CI, and they're also the sounds that are the most important for understanding human speech. Hearing vowels is all very well, but most of the crucial consonants that tie words together and make spoken language intelligible: you got it, high-frequency. In an effort to bolster my performance with speech comprehension, my remapping in October "skewed" my CI programming to include a greater emphasis on the higher-frequency part of the auditory spectrum. It also increased my CI sensitivity by a notch. The results, for a few days, made me crazy. I went to bed tired from all the sounds and stimulation. It wasn't that I hadn't heard these sounds before, exactly; it was that they popped out in new ways, and that they were ever-present as they'd never been before. Listening to someone speak became like listening to a symphony of hissing snakes - I mean, consonants.

The first time I went to see my auditory therapist after my new mapping, I sat down and recited full open-set sentences back to her, much more easily than I'd ever been able to do before. Two weeks after that, she surprised me with reading not just single sentences, but entire paragraphs at a time, and once again my brain made the connections, picked up the sounds, and fed me the meaning. Though these paragraphs were composed of simple, declarative sentences, I understood right around 80 percent. It honestly felt like a miracle, or like magic, to be sitting there in that chair having the words come to me so effortlessly. The same thing has kept happening since, and last week she made the declaration that I'm ready to move on to more complex paragraphs - namely, not at elementary school reading level, but something more like, say, my old friend Harry Potter. (That experiment is upcoming in our appointment this week and I admit I'm excited. From speech therapy years ago to my summer of listening to the books on tape, Harry has wound up being my best buddy in all things speech and listening-related.) That meaning, real meaning, can be transmitted via sound instead of only via sight, text, written sentences and paragraphs: I think it will amaze me for the rest of my life. Over Thanksgiving break, while at work, the skills even carried over to the "real world," where I overheard my first phone conversation. It was just like listening to my therapist: I understood almost everything, and the feeling was so surreal. Also while at home over the break, I found that I could understand everything my mother said to me with my back turned, so long as I stopped and remembered to listen.

So, that's where I'm at. I don't think I've experienced such a rapid acceleration of tangible skills since first getting the CI. I want to revisit some of these experiences at some point, but before then my big news from this fall, without further ado:

I've been named a Rhodes scholar. I'll be heading to Oxford next fall to embark on at least two years of study, which is an opportunity so thrilling that it continues to elude my full comprehension. I'm already writing about this elsewhere, but for the purposes of this blog - and also my private thoughts and feelings in the last few days - I'd like to take a moment to contemplate it from a particular perspective.

Longtime readers of this blog might recall the last time I went to Oxford through a Stanford study abroad program, which happened a mere three months after I got my cochlear implant. The decision to go abroad was not an easy one; I was terrified of British accents, finding ASL interpreters in a BSL world, being so far away from home, finding an appropriate support network overseas, and so forth. Fortunately, the decision to apply for the Rhodes came more easily from an accessibility perspective, and I've come to realize that the few months I spent in the UK two years ago empowered me in so many ways. I'm certain that I will feel far more empowered after two years with a Rhodes scholarship, though I'm curious to find out what British accents will sound like to me now. (Maybe I will fall in love with them. You never know!) In fact, my fall of Rhodes application essays and interviews has been its own story of empowerment. Along the way I think I discovered, more strongly than I ever have before, that if I present myself within the full capacity of my abilities and ask other people to help me figure out how to confront the challenges of my deafness, things will fall into place better than I expect. Though I'm still working at many things myself, including this whole hearing-with-the-CI business, I continue to feel more and more convinced that the "disabling" aspects of my deafness need not impact me that strongly if I can shape my situation to suit my needs. I view myself as far, far more abled than disabled, and while challenges can and will continue to arise I know I'll continue to find ways around, or through, them.

Which is why I've been a little mystified by some of this Rhodes business. The Rhodes Trust itself has been beyond supportive, and I'm cheered to have already met some very smart, considerate people who are committed to helping me succeed while at Oxford. (It still feels so surreal to say that!) I've approved of most of the coverage in the media, while raising my eyebrows that my life could be so fascinating to anyone who doesn't know me. I've needed to navigate some requests for interviews by providing remarks via email or meeting someone in person, but I've discovered that whenever I show up to chat with a stranger face-to-face I'm more than able to have an enjoyable and coherent conversation. That feels beyond fantastic. However, some things have continued to convince me that many hearing people just don't know how to address the concept of deafness, or of disability in general.

I wrote in my Rhodes application essay that I wanted to become a writer committed to exploring access, equality and difference, and the nature of communication itself. Stealing from the essay: "Our world often does not know how to talk about these things just as it does not know how to talk about disability, about differing abilities and strengths, distinct personal styles, and challenges." Being thrust into the spotlight, as a deaf person and (sometimes) as an inspiration/role model/etc., has convinced me that the aforementioned statement is true. Hearing people mean well, but they don't know how to refer to someone who is deaf. (Hearing impaired? Hearing loss? Hearing challenged? How to be politically correct?) They don't know how to bring up the subject. I see hesitation in their faces when they ask me about it. Sometimes they don't bring it up at all, but ask other people who know me about it - which makes me feel shortchanged and more offended than if they'd simply expressed their curiosity to my face. They fixate on the details: how do you go to class? how do you ride a horse? how did you learn to speak? how are you even having this conversation with me right now? They marvel that someone who is deaf could have accomplished this. (A backhanded compliment; deaf people aren't so dumb, are they?) They think using a sign language interpreter is a marvelous thing. At least they've fallen short of asking whether I read Braille. (A longtime private joke between me and a few of my interpreters.) Though the reverse is also true: they don't understand what being deaf means and ask me to call them, or give them a phone interview, or make a guest appearance on the radio. Ummm...

I am not writing this post to sigh or complain about the burden of explaining myself. It's just like if I met a highly accomplished blind person; I'd be interested in finding out more about his or her world, which I don't know very much about. But it's the cluelessness, and the occasional fixation on me as deaf first and foremost, that strikes me as strange. Case in point: as I wrote, people do not know how to talk about disability. They simply don't know much about it. The fact that I can be accomplished in so many ways and also be deaf is a rare combination. I know that, and I won't shy away from acknowledging that nor from describing my experiences to other people. However, I don't think the category (successful + deaf) should be such an exception in the mainstream world - accessibility oftentimes just has to get better. My abilities far outweigh my disabilities, and while my deafness is at the very core of my being, it's also a rather monochromatic lens. As someone who does want to write about these issues in the future, I will continue to struggle with this problem of self-representation.

To conclude this post, I can't help but be reminded of several sentences I wrote in an essay when I was sixteen. This essay, titled "Deaf and - Smart?" framed my agony over the phrase "deaf and dumb," something that deeply offended me when I was young. (It still does, but I've learned not to be defined by it. Thank goodness, I and many other deaf people I know seem to have proven it wrong by now!) It got quite a lot of attention at my school at the time, but even now - nearly seven years later - these words continue to ring true:

I don’t think I have ever been able to pinpoint the exact attitude I hold for my deafness.  It has always simultaneously been a minor detail and an insurmountable obstacle... I cannot count how many people I have met who have some preconceived notion of deafness or seem determined to treat me a certain way despite the fact that they have never met anyone with my disability. Either they behave as if I were more or less than I am, or a perplexing combination of both... Although thankfully most humans fall more toward the neutral zone between these two extremes, it is rare that I meet the individual who sees me as I am: not made of glass, but not completely independent either. These people, who choose not to view their world only from their limited outlook, are... the rare ones, and the ones whom I have learned to value and cherish.
I still find that I cannot pinpoint the exact attitude I have for my deafness - but I'm grateful that my sixteen-year-old self already saw that so clearly, and also saw the enormous use that writing has to confront this ambiguity and to challenge how people perceive disability in the world. I'm also grateful for those special people, those rara avis in my life, especially at this time of looking back but also looking forward to Oxford and beyond. Maybe someday I'll find the words to express what exactly I'd like to say, both about hearing loss and other unrelated things, but fortunately I've got many more years for that.