Deafness and the Problem of Disability: Reflections on research post ASA 2013

This past week I had the great pleasure to make the journey from Washington to New York City for the annual American Sociological Association meetings.  The decision to go was semi-spur-of-the-moment and spawned mostly from a desire to see sociology friends and colleagues, rather than for academic or  networking pursuits.  The result would be, of course, great times with friends, but even more so, I was to find myself in the most inspiring conference panels.  Inspiration would continue in conversations with new friends and respected colleagues over $17 glasses of wine, and some of the worst, then best, pizzas NYC had to offer.  I would leave with more questions than answers, and with the inspiration to do more.  

After one of the easiest airline travels I found myself quickly into a cab and on my way to the conference for a medical sociology panel entitled, "Emergent Research in BioSocial Interactions."  After seeing this panel in the conference program I was eager to attend for several reasons, the biggest of which was that I had identified as a BioSocial researcher in my dissertation proposal.  I had done so in an effort to distinguish myself from the two existing theoretical approaches to disability which I find lacking for various reasons: the medical and social models of disability.  In writing my proposal and researching some of the theoretical justifications for the BioSocial model, I had assumed this is where I would find my theoretical foundation. So, I was eager to see what was in the queue for these BioSocial researchers.

While the work presented was interesting and valuable for both sociological and natural scientific communities alike, this wasn't my "home."  I was disillusioned to discover that Biology * Sociology = Biology.  During the panel presentations I struggled to find the connection between the emerging field of BioSocial research and my own work.  While I am thrilled to be able to follow these scholars in their impulse to critically engage the intersections between biology and the social environment, I recognize that this work is problematic in that the outcome variables are often left in the realm of the biological.  That is, BioSocial researchers seek to explain biological outcomes.  These biological outcomes are then sometimes linked to broader social issues like inequality, often in terms of the health disparities research; but understanding the inequality is not, at least explicitly, the primary focus of this research.  Now, let me clarify, I believe whole-heartedly in this research.  I believe that understanding health disparities in terms of the connections between biology and society are of primary importance to the scientific research agenda.  This, however, is not the focus of my own research.  The "dependent variables" in my research are not biological outcomes that can be linked to broader social issues.  Rather, the outcome variables for my research are identities, and products of social interactions from which biology and the social environment cannot be separated.  My outcome variables are, without any additional explanation required, BioSocial.  In the words of Carol Padden and Tom Humprhies, I am studying individuals who are both "deaf" (the biological status of hearing loss) and "Deaf"(the socio-cultural experience of identifying with Deaf community).

In the days that would follow I found myself in several Disability & Society panels and one engaging session on "Technologies and/of Marginalized Bodies." These presentations and Q&A discussions would help me to consider the intersections of biology and society from a socio-cultural approach.  While undeniably inspired by this work, I often was left wanting for an engaged discussion of the connections between the social, cultural AND biological impacts of health and disability.

The two groups of scholars whose presentations I had attended throughout my 3 days in New York were each talking about different sides of the same coin.  But I couldn't find a group who was talking about the meanings and impact of the entire coin!  In the same way that doctors are criticized for treating the symptoms, not the whole patient, I think sociologists are also at fault for addressing only small pieces of a larger BioSocial phenomena.

I spent a majority of my time at the conference wondering if it was even possible to study the social experience of being both Deaf and deaf without reproducing the biological/social binary.  Perhaps the reason BioSocial researchers, disability & society scholars, and medical sociologists don't present on the same panels is because sociology doesn't have a theoretical model for this kind of research.

In the midst of my confusion I met an inspiring fellow grad student who has been working on some of the same issues I've been working through.  We had several conversations about this theoretical puzzle.  We'd agreed that disability scholars had also been calling for a new theoretical approach to disability that did not privilege biological or socio-cultural explanations, but that one did not yet exist. After breathing a sigh of relief for the fact that I might actually have understood the literature I'd been reading, I began to ask: But now what? What do you do when you're trying to work with a theory that doesn't exist?  Can a graduate student, or even the two of us grad students both working in this field, build a theory to explain deafness (and disability more broadly) as both socio-cultural AND biological without giving primary weight to either facet of the BioSocial experience?  We never came to an answer, but I think we both agreed that sociology would benefit from the development of a new theory.

As a sociologist who sees myself responsible for engaging in life outside of the academy, I looked back to the the realm of the popular media to see how these theories are playing out in the "real world."  Not surprisingly, popular media reports also reflect the heated binary between Deafness as a socio-cultural status and deafness as a biomedical marker of hearing loss, especially when it comes to cochlear implants.  See for example this article in The Atlantic published just one day before my ASA trip entitled, "Understanding Deafness: Not Everyone Wants to be 'Fixed.'" In sum the article states that the contentious debate around cochlear implants "stems from a fundamental disagreement: one group sees deafness as a disability, and the other group sees it as a culture.  The trouble is that the former group holds a disproportionate amount of power, and the latter group are the ones affected."  This argument is highly sociological and would reflect the disconnect between BioSocial and Disability & Society researchers.  However, discussions with my peers at ASA and my own preliminary findings suggests that the binary is too harshly drawn.  When asked, "Is being deaf a disability?" many of my participants have responded by saying "yes and no."  It is clear from their physical responses to my question and their often complicated answers that the either/or approach to the Biology vs. socio-cultural debate is inadequate for explaining the d/Deaf experience.  I take this as my call, whether its possible to complete or not, that BioSocial research and socio-cultural theories of health, disability, and deafness must come together to explain a more complete picture of the d/Deaf experience and push the field of sociology, and of public discourse beyond this exceedingly useless binary.

So while I headed to ASAs with the intentions of visiting with friends and colleagues, and exploring a new city, I returned to DC with some more clarity, and more confusion, around my research.  I am thankful for the budding connections with colleagues in several subfields of sociology whose work and insights will help me make my way through this puzzle.  I look forward with great anticipation (and fear) to the unpaved road ahead.  Like the eternal explorer I am, as I successfully "found a way" to Penn Station, I suppose I will also have to "find my way" through this theoretical puzzle.  (That's for you, John.)      

Things Nobody Told Me Before Going into the Field...

I'm 2 full weeks into data collection.  I've had some really exciting research highs, and several "oh my God what did I do; take me home; I quit" moments.  Through it all I've begun to understand even more why research, the ethnographic experience, and sociology in general are addictive.

• Nobody told me how physically exhausted I would be after even a few short hours "in the field."  (Actually that's a lie, one of my committee members, Laura Carpenter, did warn me of this; I just had no idea of the extent).  After my first 2 days I thought something was wrong with me.  (Don't worry, I checked, WebMD says it's cancer.)  My personal diagnosis is that research is the most exhausting total body workout imaginable.  The first week my schedule comprised of observations, meetings, forced sessions of writing fieldnotes, and countless naps.  It was just over a week ago, and I honestly cannot tell you what I did without looking back at my calendar (see point below on organization).  I suppose I fell back on the methods training I had and went to ethnographic autopilot.  I was not expecting this at all!  At the start of week 3 I am feeling a little more at ease, taking fewer naps, and am producing more streamlined thoughts.  Who knew that it would take 2 weeks to get over ethnographic jet-lag and start to feel normal again?
• I've read much about preparing yourself to enter or exit "the field;" but nobody told me that "the field" doesn't end or begin at the University gates.  I was trained to think relationally about social phenomena, so I don't know why it surprised me that I am learning about the Gallaudet experience while I'm in a grocery store full of hearing adults, or on the metro going to the Smithsonian museums, or listening to the radio.  I am fully engaged with and in the field even when I'm no where near my participants.  I hope this experience doesn't fade. I hope I am able to continue to learn more about the Deaf experience through the writing of this research, and even into my next project.  I hope the limits to  "the field" are boundless. 
• Nobody told me that I would simultaneously feel overrun with ideas and speechless.  In every interaction I find myself in, or observe, in every question I ask, in every response I "listen" to, my mind is spinning with ideas, theories, more questions, etc.  But at the same time I feel speechless and unable to force these thoughts together into a coherent statement.  I am grateful that my fieldnotes are my own.  That my jottings, voice recorded memos, and post-it note reminders are private.  I am hopeful that soon, or at least by the end of these 12 months, that I will be able to form and also write a coherent statement about this ethnographic experience. 
• Nobody told me how critical and time consuming scheduling, logistics, and organization would be.  I had no idea I would spend several hours each day organizing, planning, scheduling, and routinizing my life.  Thank god for those junior high school lessons on organizing your trapper keeper, keeping a calendar, and making check lists!
• Also, nobody told me that Talenti makes the BEST chocolate ice cream/gelato.  Fellow researchers, no further hypothesis testing needs to be done on that one, my case study of 1 jar is conclusive evidence. 

So despite the ups, the downs, the naps, and the sugar rushes at this juncture in the research experience I can say that I am without a doubt thrilled to be here in DC doing the project that was never intended to be.  And, to be quite honest, I'm glad nobody told me because discovery is part of the addiction.

The project that was NEVER going to happen

In my third year of graduate school I took a class on ethnography with friends because I had heard good things about the class, and well, lets be honest, because I wanted more time with friends I saw all too infrequently.  My skepticism of the method was hard for me to disguise as I had recently completed a year of training in positivism, ah hem, statistics.  Despite my inability to control my doubts I really enjoyed the class.  At the end of the semester we were asked to write and present a detailed proposal for a project using ethnographic methods.  I proposed a dissertation project on the deaf community's response to cochlear implants.  I proposed to move to Washington, DC for a year to conduct ethnographic observations of an incoming cohort of students at Gallaudet University who would also be enrolled in a summer orientation program called JumpStart.  My classmates (and instructor) all saw great promise in the project, asked many followup questions and provided much encouragement for my innovative ideas.  I believe I ended that presentation by saying, "thanks, but you know this project will never happen."

Now 18 months later, here I am, in Washington, DC in the I. King Jordan Student Activities Center on Gallaudet's campus about to head out to my first round of observations at the JumpStart welcome presentation.  I guess this proves I shouldn't start gambling anytime soon.

Here I go!

Deaf in Palestine Music Video

"The song is written by deaf youth from Bethlehem and Jericho, sharing their personal challenges of being deaf in Palestine. The rappers are from Dheisheh refugee camp, south of Bethlehem. As the rappers rap the stories of the deaf people, the deaf writers simultaneously sign the words. The video is produced by Tamara Abu Laban from Dheisheh camp."  See the video here


From: http://english.pnn.ps/index.php/culture/4580-raising-awareness-to-palestinian-deaf-community-through-music

The "So What?"

When asked to describe the mentorship and advising I receive here at Vanderbilt the discussion of finding my "so what" is one of my go-to responses.  I vividly remember hearing this phrase for the first time from my mentor, Jennifer Lena, in my first semester of grad school.  I was in Jenn's office making a timid attempt to describe my research interests in the area of cultural production when she, in the direct, no frills manner I came to know well, asked, "So what if I don't care about [insert my topic here], why should I care about what you're saying?"  Over the years Jenn's words have come back to haunt me in a variety of forms: Why should I care? What's the sociological contribution of your study? If I have no interest in deafness what can you tell me about community, technology, disability, etc.?  What is theoretically interesting or innovative about your study?  What are the debates you are engaged with? And the list goes on and on.

The other day I found myself needing encouragement and motivation to tackle another round of these questions in an upcoming meeting so I  started asking peers in my department if they too were asked these questions, and if so, how did they respond. Being a sociologist, I began to notice patterns in their responses.  Immigration scholars, gender scholars, education scholars, social movement scholars, and health scholars weren't being asked these questions with the same frequency that I seemed to be encountering them.  In fact, the only students who seemed to be able to commiserate with me were students who studied culture in some form. So I began to wonder, is this an effect of the culture faculty members at Vanderbilt?  Is this an issue specific to the subfield of the sociology of culture?  In my research I am asked to extend to other subfields of sociology: to migration, social movements, race, ethnicity, etc.  But why doesn't someone ask a health scholar at Vanderbilt: "So if I didn't care about disparities in health outcomes why should I care about your project?" Or, "If I am not interested in immigration reform why does your work matter to me?" Or, "Why should sociologists outside your field care about this research?" Is it just evident that studies of health, immigration, gender, social movements, etc. are interesting in and of themselves in a way that culture is not?  Is this because the field of culture and theory are more intertwined than I'm admitting? (The sections do always have joint receptions at ASA.) Are faculty members who study culture at Vanderbilt more theoretically engaged than their peers? Are my fellow students being asked these same so what questions in different ways?  Should they be asked these so what questions?  I don't know, but if you have thoughts, please share!

Okay, enough "why me?", now back to figuring out "so what?"

UPDATE: After some discussion with a few readers and a second read of this post I've come to the conclusion that I need to specify the types of "so what" questions I encounter.  Because, as Mary Laske, a colleague and friend of mine appropriately noted: "Everyone wants to know what is new about your work or what we can learn from it--if there's nothing new, then it's not science, it's a lit review."

A common response to my dissertation is "So what can your research on culture and embodiment tell us about immigration [or health, social movements, etc.]?"  Its as if connecting two diverse subfields in sociology isn't enough.  It's like I'm being asked to connect my work to every section of ASA in order for it to be accepted as a valuable contribution to the field of sociology.  Do others outside of culture scholars encounter these types of "so what" question?

I don't find these types of so what questions discouraging (most of the time), but rather I'm just interested to know if this is a common response to all research?

Ear Infections, Airplanes, Hematomas, Oh My!

I came down with a cold and what I presumed to be double ear infections while in DC for the Signmark show.  I've had trouble with my ears my whole life and have had countless painful ear infections, burst ear drums, the whole nine. I've flown with ear infections in the past and have learned tricks for dealing with the excruciating pain of altitude changes.  Due to restrictions on time and tickets I had no choice but to prepare myself for the pain and board the plane home to Nashville.  While in the air I had every anticipated pain, and after landing I noticed a significant hearing loss in my right ear.  After living with this loss for a few days I decided to go to the doctor to have it checked out.  During my appointment the doctor discovered a large hematoma in my right ear canal that was preventing sound waves from making their way to my ear drum, no wonder I couldn't hear!

After first learning that humans rarely get hematomas in their ears I began to think more seriously about my dissertation.  This was not the first time I've had trouble hearing due to an ear problem, but this is probably the most amount of hearing loss that I've ever experienced.  I started joking about doing an autoethnography now that I too had a hearing loss.  But as my hearing is slowly returning I'm faced with the methodological and theoretical difficulty of being an outsider in social research. I can never know what its like to be deaf.  Even as I become further integrated into Deaf culture, ASL, and the customs of the community, I will always be an outsider because of my audiological status.  In my work I spend a lot of time arguing that hearing impairment is real, but that speaking only in terms of hearing loss misses the point!  Deafness has social and cultural implications too.  As my dissertation is shaping up to be about the intimate connections between bodies and their socio-cultural environment and the dangers of attempting to separate the the body from the social I wonder, is it even possible that an outsider can really understand, let alone reproduce in writing/analysis, what the Deaf community faces?  What's my role as a hearing researcher in this community?  Should I even be doing this project?  What does all of this mean for my work?

The answers to these questions are unknown today.  But, after my cold and infections clear up I'm going for a full audiological screening to see just how much hearing I have lost over the years of infections, burst ear drums, and now a bruised ear canal.  Maybe I will have that diagnosis to move me from a true outsider to an insider after all...  Otherwise, it seems like I'll have some major questions to tackle.

Keep on Writing my Dissertation, DJ Robbie Wilde!

A few quotes from DJ Robbie Wilde's HP commercial, The Sound of Touch:

"Just a feeling of the bass, that's how we dance.  That's how we know what's going on, and we enjoy it!"

"So the way that technology helps me out is the wave forms are colored. Red is a kick, its a bass, and green is a vocal, and blue is a snare.  That's how I see what's being played.  I see the song."