Dr. de Wolfe receives Outstanding Dissertation Award
At the 2013 meetings of the American Anthropological Association, Juliette de Wolfe (PhD, 2013) received the Outstanding Dissertation Award given every year by the Council on Anthropology and Education.
Exerpts from one of the nomination letters:
Dr. Juliette de Wolfe's dissertation, tracing the experiences of parents facing their child’s autism, is a ground-breaking document that should transform the anthropology of education and disability. Like all good ethnography, her research provides a glimpse into the lives of people who would not otherwise be noticed. Like all good anthropology it shows the way towards theoretical developments in the field it addresses.
To get to this point, Dr. de Wolfe followed a path many in our field will recognize. She started as a dedicated teacher, realized the limits of the intellectual and pedagogical groundings of her work, discovered anthropology and found in its approaches and methodologies a route to develop her mission as an educator. For several years she taught as a Special Education teacher in a primary school classroom for children with multiple disabilities. She became particularly interested in the children who were in the process of being labeled as “with autism.”She sensed that the problem was only partly about the symptoms and any underlying condition. Just as consequential were the classroom contexts that made these symptoms stand out as problematic. She recognized, as many have before her, that disabilities, to become consequential in the life of an individual, must be noticed, and then classified, as just this and not that. Trying to figure out how this might be led her to our program in Anthropology and Education at Teachers College, Columbia University and, eventually to her dissertation work.
It is a distinguishing feature of the programs in anthropology at Teachers College that they use an apprenticeship model where students are required to go through a full iteration of the significant moments in a doctoral student life, and indeed in the life of an academic researcher, within the first two years of their graduate studies. Thus,at the end of her first year, Dr. de Wolfe returned to one of the classrooms she had known well but in the different position of ethnographer. In the classroom she saw again much of what has been described over the years about the structural constraints in the relationship between teacher and student that acquire students who move from being “autisticky” (as one teacher told her) to being “with autism.” But, as she wrote up the report on this preliminary research she started to worry that “social construction of disabilities” or“culture as disabilities” approaches ran the risk of discounting the phenomenal experience of living with the physical or interactional symptoms whether one is the person of focus or one is part of the entourage with direct, though sometimes partial, responsibilities. And she realized that the focus on classrooms, while understandable given the political centrality of schooling, eclipsed the experiences of everyone else, and particularly the parents.
These considerations led her to propose and conduct a most original piece of anthropological research at the intersection of education and disability. Specifically, she sought parents of labeled children. She looked for the settings where she might see them transform their livesto adapt to the autism of their child as it was constructed by the many institutions and people whom the child encountered. In the process, she demonstrated again the power of ethnography to reveal much that can remain hidden or that can be discounted. For example, she immediately discovered one correlate to the disinstitutionalization of the care of people with disability: if the state is not to take charge of this care,then parental privilege, or lack thereof, is going to make a major difference in the type of care, the relative power of the parents vis-a-vis different kinds of professionals, etc. (and not always to the benefit of the child).
Eventually she focused on one set of parents who had grouped themselves and who had started to use the new technologies for their own education and advocacy activities. Tracing the development and work of this group constitutes the body of the dissertation. But the research is only partially about social organization and education. Above all it is about the experience of living with autism.
Dr. de Wolfe core analytic step remained facing autism as a physical event requiring a response from all those surrounding the child. Her pages on toilet-training, first menstruation, or responding to the stares of passers-by are powerful narratives with profound implications. Her second step is facing the reality that each child is indeed different from other children, and also different from the way he or she might have been earlier in their life. Her next steps involved following the settings, institutional as well as less institutional,from schools to playgrounds and elsewhere, where the parents and their child cannot escape finding themselves. Starkly, these keep changing,just like a child’s body changes. Again and again, diagnostic categories shift, experts disagree about treatment, social services become available in certain cases but not in others, resources become available, and then dry up, etc.
By taking seriously this ever shifting terrain, Dr. de Wolfe is exploring a dynamic process of encounters that require ongoing investigation and production of what becomes new conditions for future action. The twist here is that she does not treat social or cultural conditions as “causes” of autism, of its institutionalization, or of the consequences of this institutionalization. The conditions, like the physical manifestations currently classified together as “autism,” are triggers for further cultural production that will make the whole significant in a new, and still particular, way. The hope is that,understanding how autism is made to matter will lead us to find ways to make it matter less, or to make it matter more positively for all caught in its webs.