Living "The Social Life of TBI:" On the Value of Embodied Research
I then personally experienced how these impairments interacted with my work in the field. I noted these interactions on field notes that I recorded following ~50 narrative and semi-structured interviews with survivors, their friends and families, and policymakers, attending weekly TBI Support Groups, and conducting participant-observation at formal and informal community events. I also kept a field journal where I reflected continually on the role my injury’s chronic sequelae play in my development as an anthropologist, my ethnographic study, and my intended future in academia. Additionally, during this time, my project team conducted monthly conference calls, during which I informed the team of my progress and helped introduce them to social angles on TBI that they could use in their own projects down in Arizona.
Finally, I was also an active member of the AUCD Diversity Fellowship’s policy sub-group. I tried to bring in my background as a Master of Public Administration (MPA) and my work with local non-profit and health organizations to discuss various disability policy-related issues. My specific interests were in TBI survivors’ workplace and employment concerns as well as the intersection of disability and public health policy, both of which impact TBI survivors (whether or not they identify as disabled and make use of ADA-guaranteed accommodations). The group did not meet more than a few times, but it played a significant role in my thinking about my project, as well as my thinking about my dissertation, one phase of which focuses on public policies and programs for TBI and TBI survivors in the area.
2. Who did your project inform, help, influence or impact? (UCEDD, individual, community, state) How?
My project aims to promote embodied research practices that are common in Disability Studies to the social sciences. It seeks to do so by exploring its usefulness in developing my own NSF-funded PhD dissertation research in Medical Anthropology, “The Social Life of TBI”, that analyzes the integral role that social interaction and significant others play in the lives of many millions of US TBI survivors. It also helped my two other fellowship colleagues at the Sonoran UCEDD develop their own TBI-related projects by talking to them about my impairment, my research on that impairment, and TBI and disability-related research and teaching.
It does so through a critical self-reflection and recording of my own work as a disabled scholar conducting new research on his own impairment category.
3. Why did you choose to work on that project(s)?
The Fellowship project dovetailed with my PhD dissertation, for which I am now conducting ethnographic fieldwork. The dissertation directly responds to my own experience as a severe TBI survivor and graduate student over the past 5 years. It uses both my own disability experience and those of others I have worked with over the years to develop my study’s theoretical foundation (using new approaches within Disability Studies to fuse the theoretical perspectives of phenomenology and performativity), methodology (triangulating interviews, focus groups, policy studies, and participant observation), and data sources (survivors, friends and families, policymakers and NGO staff). However, I received enormous push-back from my anthropological advisors whenever I talked about the role that my personal experience played in developing my project. I also encountered resistance when I talk about plans to use my embodied experience in both analysis and presentation of the data (but not as a data source). This approach is common in disability studies and other critical and humanities disciplines but is often frowned-upon in the social sciences. Thus, I wanted to document the usefulness of my own embodied research to my larger project, and this fellowship presented an ideal situation in which to do so.
4. What did you gain from being a Diversity Fellow?
I gained in many ways. First, it helped me conduct analyses that are outside of the scope of my dissertation. It also gave me a more personal outlet to the jarring experience of conducting formal research on what is a highly personal and informal experience for myself and those I work with. As many others have said, it helped me connect to a community of diverse academics from medical, policy, humanities and other disciplines with which I have had few interactions during my graduate career. Fellowship and policy group meetings gave me the chance to pick their brains and hear their thoughts on my project and theirs, which really helped me define and develop my project. Finally, the Fellowship helped me connect my own impairment experience with the larger disability studies community. Because TBI causes such an odd, multi-faceted, and largely invisible set of impairments, it is often hard to related to the wider community. Being part of the fellowship helped me locate myself and my research more firmly within the disability community in general and Disability Studies in particular.
5. How will this experience impact your education or career decisions?
This experience has directed me to ally my research goals much more with the field of Disability Studies than I had been focusing. A Disability Studies perspective enhances an anthropological perspective that makes use of embodied research methodology, I can more effectively use social science theory and methodology to further research that is directly relevant to policies affecting both myself and my community. Although I do not have enough evidence to fully say so, I hope that my research will be of direct use to policies and programs affecting TBI survivors and their families in Seattle. The fellowship helped guide me to a potential career where I could do the same work on a national level.
6. What are your future goals? Where do you see yourself 5 years from now?
I am on track to become an academic. Although my degrees are in policy and programming (MPA) and Medical Anthropology (PhD), I hope to work in a position that furthers both disciplines from a specifically Disability Studies perspective. This could be either in NGOs and other civic organizations that do policy research and studies or a University appointment. Ideally, in my future career, I will collaborate frequently with community organizations from a university position. But a more realistic 5-year picture lands me in one or the other, and continuing to work towards that final goal.
7. What recommendations do you have for other Fellows?
Make sure to work with the AUCD fellowship contact (for us it was Christine Liao) to identify other potential collaborators in your sector. She helped to connect me with organizations in my field site in the Seattle area (my PhD studies were in Tucson, AZ) that have been important to the completion of my fellowship and toward planning my career after graduate school. Also, have conversations and keep connections with other fellows in both all-fellowship meetings and sub-group meetings (mine was in policy), as those will help you develop your project and your later career.