Saturday, August 17, 2013

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.)      


  1. I think the two sides of the coin you identify may be focused on different levels of reality. There may indeed be one coin, but there are multiple layers of meaning that travel with the coin and in important ways constitute the coin. My two cents.

    1. Ah interesting point, Dan. Then, is it ever possible to talk about these multiple levels of reality in a relational manner? Or, do you have to examine one side then the other? I ask not only as a researcher engaged in the analysis, but I also wonder if participants could or would talk about the two levels of their reality together? Maybe that approach is just out of the realm of possibility. I'm not sure. I just know that the either/or deaf vs. Deaf (biology vs. socio-cultural) approach isn't working for my case and I'm not sure how to fix the issue.

    2. Also, Dan, for what its worth your research has been an inspiration for me in connecting the biological with the lived experience. The observations of surgeries and the discussions with both doctors and patients about the experience of DBS is, in my opinion, is moving sociology in the direction of being able to understand the totality of experience of health & disability. I think its exciting that there is more work to do.