Engaging Activism in Anthropology of Disability

Mirjam Holleman (author, left) presenting on the topic of (dis)ability and social inclusion to a small audience at a festival (Slot Art Festival) in Poland, summer 2016. Photo courtesy Mirjam Holleman.

Mirjam Holleman (author, left) presenting on the topic of (dis)ability and social inclusion to a small audience at a festival (Slot Art Festival) in Poland, summer 2016. Photo courtesy Mirjam Holleman.

The anthropologist is frequently construed as an ideally detached observer who doesn’t let his or her own ideals or visions for society interfere with or steer her research. But sometimes it’s hard not to care. As Sally Merry has described, pressing issues of social justice challenge the border between scientific disengagement and ethical activism and “open up important possibilities for rethinking what anthropology is and does, and what contributions it can make to global activism concerning social justice.“

This past summer I was in Poland, conducting preliminary ethnographic field research for my dissertation project about attitudes toward and experiences of people with disabilities in Poland. While I was in the field as a researcher, I didn’t feel personally affected by the things I was observing or hearing. I was (and still am) very thankful that my informants didn’t treat me with kid gloves. They spoke candidly to me about their and their society’s attitude toward people with disabilities and ‘the issue’ of disability and accessibility. But now that my goals my have been reached, it’s time for some personal processing. I guess it’s undeniable that I have a disability too, and I’ve experienced firsthand the huge difference that a few simple accommodations and an accessible environment can make. It’s the difference between inclusion and exclusion, participation and marginalization, recognition and invisibility. That is why I can’t simply be a detached observer.

Jennie Fenton’s  TedX Talk begins with an illustration of the caste system in India, where a segment of society, by virtue of birth, is excluded from certain public spaces and events. In the talk, she asks the audience to imagine if this kind of marginalization were happening in their own society, wouldn’t they be outraged? Well, Jennie points out, it is happening in our societies, and this segregated group are people with disabilities, who, by virtue of the body they were born into (or developed through no fault of their own), do not have equal access to many parts of their society. And yet we turn a blind eye or make up excuses like ‘there isn’t enough money to change this’ or ‘the disabled people themselves prefer to stay in their homes and be lazy and let other people care for them’ or the idea that ‘disability is something that doesn’t concern me’ or only affects a small segment of society. ‘Why go through the trouble of making the world more “comfortable” for a few [unfortunate misfits] who are too blind, or too lame, or too deaf, to function in the ‘normal’ world?’ (these quotes reflect some of the statements and sentiments I heard in Poland).  But why should those who can walk always be privileged over those who can’t? Why should those who can see and hear be privileged over those who can’t? It doesn’t hurt anyone to make it possible for blind people to cross the street safely, or for wheelchair users to have access to buildings and make use of public transportation too.

Sometimes I feel like I’m shouting this to a stone wall though. Sometimes I feel like I ought to acknowledge that, well, this is just one of the many ‘issues’ in the world. And of course, everyone thinks their cause is the most important. Sadly, it makes sense to me that “mine” isn’t seen as the most important or the most popular cause out there. At times I found myself beginning to adopt the emic perspective and almost agreeing with the statements of some of my informants in the field, such as:

Creating a secure economy is most important here. After that, you can start dealing with the comfort of the people.”

This statement equates accessibility with comfort, ease, or even privilege, rather than an issue of equality and inclusion.

“Everyone struggles in this society. The majority needs to be served/content first, before people can start to think of such first world issues as ‘minority rights.”

This comment suggests that disabled people are some kind of second rung citizens who need to wait their turn patiently, to be ‘served’ and have their needs met, rather than full members who could already play an active role in building and shaping society.

Such sentiments make sense to me, but also left me feeling discouraged at times–why do I bother? Maybe this is just a ‘first world’ luxury issue, and I shouldn’t be bothering or annoying these people with it. On the other hand, creating accessible spaces really doesn’t have to be an issue of having the right amount of money (and believe me, even when all the money and resources are there, people could, and do, still neglect it), it’s about having the right amount of motivation for it. I’ve also heard encouraging stories, of neighbors getting together to build a ramp for one of their neighbors who uses a wheelchair, for example. Even though there was just one man in the apartment that needed this accommodation, the neighbors cared, and they built a ramp for him. Nothing fancy, and it probably doesn’t meet ADA requirements in terms of safety and durability, but it works, and now he can get in and out of his house. Poles are very creative and, if they care, they’ll always come up with clever solutions and help one another. Stories like this give me hope.

In activist anthropology, the researcher utilizes personal convictions as a strength, rather than avoiding them as though they were a trap. It challenges the notion that the anthropologist is a detached observer who simply has an academic and impersonal curiosity about the habits, customs and believes of the ‘natives,’ rather than one who holds a shared commitment to improving their situation.

Full version posted on my research blog.


Mirjam Holleman is a graduate student in the Biocultural Medical Anthropology Program at the University of Alabama. For her dissertation project, she will be investigating attitudes toward and the experiences of people with disabilities, in terms of their social integration and participation, in Polish society.

Talking about Race with “White Person Bias”

Author Jo Weaver juggling fieldwork and family in Brazil. Photo courtesy David Meek

Author Jo Weaver juggling fieldwork and family in Brazil. Photo courtesy David Meek

Fieldwork. We all do it, yet it seems to be something that’s particularly hard to teach and talk about, especially when so much of the success of fieldwork in any anthropological sub-discipline hinges on a researcher’s ability to form genuine social relationships. I’ve heard people say, “You just can’t teach that” about this keystone of success. Well, Russ Bernard has shown us that many elements of the focused attention required for fieldwork can be taught (see his section on participant-observation from Research Methods in Anthropology, AltaMira, 2011), while books like Tales of the Field (Van Maanen),Disasters in Field Research (Ice, DuFour, and Stevens), and I’ve Been Gone Far Too Long (Borgerhoff-Mulder and Logsdon) speak to the need in the social sciences to share and learn from fieldwork mistakes and misadventures.

I continue to be fascinated by the exigencies of fieldwork, perhaps in part because they are so universal yet typically not prioritized in discussion—so familiar, yet so strange, to quote the theme of the upcoming AAA Annual Meeting in Denver.

Chris Lynn and I have organized a session for the meeting titled, “Hidden Motivations and Glossed Justifications: Problems and Priorities in Biocultural Field Research,” which we designed as a forum for an updated discussion of the practicalities of field research. Our inspiration came in part from Clancy and colleagues’ recent PLoS One study on sexual harassment in the field, which received a lot of press last year (a shocking 70% of the over 500 women they interviewed reported experiencing sexual harassment at some point in their field research careers, while 25% reported actual assault). Robin Nelson, one of the study’s authors, will serve as our session discussant.

I am especially excited about this session because, although the presenters are all professors, the topics address challenges common at all stages of research and training.Rebecca Lester’s and Eileen Anderson-Fye’s presentations, for instance, will explore how fieldworkers manage and respond to trauma, both theirs and others’, in field research. My presentation will use data from a small study of fieldworkers at various stages of their research careers to explore how they grapple with racial differences between themselves and their informants. Chris Lynn’s and Michaela Howells‘, meanwhile, will discuss fieldwork and family—a favorite topic of mine and one relevant for graduate students and faculty members. There are important lessons to be learned here for students, mentors, and fieldworkers at all stages.

My desire to talk about race and racially charged encounters in fieldwork stems in part from my employment in a largely white department (as most anthropology departments are) in the deep south. Our department’s faculty are particularly concerned with social inequity in health outcomes, which means that our research and teaching often put us in contact with disenfranchised people in the greater Alabama area, many of whom identify with minority racial groups. The ongoing racial tensions in our community, which are more blatant though probably no stronger than anywhere else in the U.S. right now, undoubtedly shape our research and teaching—especially when it comes to understanding and reflecting on how we are perceived by the people with whom we work.

Early anthropologists were often missionaries or colonial representatives working among peoples in Africa, Asia, Latin America, and Oceania who were assumed to be inferior because of their non-Europeanness…It is a mistake to willfully overlook those racial under- (and over-) tones because what we do today still very closely resembles what we did in the past.

 

Last year, when I received a student review that claimed my teaching suffered from “white person bias,” I took the comment very seriously because I regularly teach about social inequality and social justice in the south. I’ve spent a lot of time thinking about how to engage racial difference in an overarching cultural context of racial tension meaningfully, respectfully, and in a way that is useful to all parties involved. Although I thought I was doing this pretty well, my student’s comment reminds me that I have a long way to go. So, my motivation for doing a study of fieldworkers’ engagement with race is partially selfish.

 

This issue is also important from a historic perspective in anthropology. We all know that early anthropologists were often missionaries or colonial representatives working among peoples in Africa, Asia, Latin America, and Oceania who were assumed to be inferior because of their non-Europeanness. Typically, when anthropologists read these materials today, we do so with an understanding that we must overlook the racism embedded in these authors’ works if we want to extract their insights. We say that we can’t get caught up in their racism because that’s just how things were back then.

 

But I think it is a mistake to willfully overlook those racial under- (and over-) tones because what we do today still very closely resembles what we did in the past. No matter our intentions, we are still an overwhelmingly white discipline that works with people all over the world who do not identify as white. We are still an overwhelmingly white set of authority figures, and our classrooms reflect much greater racial and ethnic diversity than our anthropology faculties and departments do. We need to talk about these things.

 

So, come to our AAA session and help me figure out how to be a better anthropologist. You might learn something, too.

“Hidden Motivations and Glossed Justifications: Problems and Priorities in Biocultural Field Research”
Invited Session sponsored by the Biological Anthropology Section and the General Anthropology Division
Thursday, November 19 4:00 pm- 5:45 PM

Lesley Jo Weaver (PhD/MPH, Emory) is an Assistant Professor in the Biocultural Medical program and an affiliated faculty member in UA’s Asian Studies program. She studies health and illness in India and rural northern Brazil.

Biocultural Systematics is written by members of the University of Alabama Biocultural Medical Anthropology program.


This post originally appeared in Anthropology News‘ October 2015 “Knowledge Exchange.”

Cheap Thrills and Elementary Anthropology

For the lay person, such as myself, the main evidence of a problem is the simple fact that ethnographic writing tends to be surprisingly boring. How, one asks constantly, could such interesting people doing such interesting things produce such dull books?”

I came to anthropology through journalism but wanted to do the research and be one of the popularizers. Yet, I soon realized many popularizations are not written by anthropologists, whose work is too jargon-filled for public consumption. I have heard from colleagues opposed to such public anthropology that the complexity of culture is poorly represented through public renderings, but sometimes a sufficiently complex representation is too complex to be easily understood.

I suggest a two-pronged means of dealing with this seemingly de facto problem with anthropology. We can and need to start teaching children anthropology earlier so they can developmentally build their understanding of human cultural complexity, and we should help them build up their understanding by making real anthropology experience accessible and interesting.

Anthropology is Elementary (and Primary)
What will undergraduate education be like when our students show up having had anthropology since they were in 3rd grade? How sophisticated will public understandings be? Will otherwise intelligent people make quips that we write boring books once they understand them as a matter of course because they are simply better educated in anthropology? Yes, I see the glass half-full sometimes, but I have also heard a 4th grade child explain developmental origins of adult disease theory better than some graduate students.The Department of Anthropology at the University of Alabama is teaching children anthropology earlier through a course called “Anthropology is Elementary.” This course, taught by graduate students, trains our upper-level undergraduates to teach anthropology in partnership with local elementary and middle schools. We have developed this approach over several years and been humbled by the capacity of children as young as 8-years-old to learn what we had thought too complex for them. We began with a general four-field course one semester per year and have expanded to “Anthropology of Costa Rica” in the fall and “Anthropology of Madagascar” in the spring. Each course covers garbology, museum interpretation, symbolic communication, cultural relativism and diffusion, primatology, human evolution, Mendelian genetics and race, and forensics. Additionally, undergraduate instructors develop new lessons and activities each semester.

Author Chris Lynn, doctoral student Max Stein, and Tuscaloosa Magnet School Elementary students demonstrate tongue-rolling, a Mendelian trait. Photo courtesy Virgil Roy Beasley III

Author Chris Lynn, doctoral student Max Stein, and Tuscaloosa Magnet School Elementary students demonstrate tongue-rolling, a Mendelian trait. Photo courtesy Virgil Roy Beasley III

What will undergraduate education be like when our students show up having had anthropology since they were in 3rd grade? I want to be able to go deeper than the gloss of nature versus nurture before they get to college while keeping anthropology interesting to the general public.

Another means to overcome the so-called dull barrier is simply to keep anthropology accessible. While local archaeology field schools are common, it’s important to develop biocultural research opportunities that are available to students by which to reinforce the early training I mentioned in the last section. It is doubly important to validate that this research is real. Several of our faculty and students have conducted local projects that create opportunities to integrate undergraduates and collaborative publishing. A few decades ago, Bill Dresslerconducted one of the seminal studies in the cultural consonance approach, studying the influence of discrimination stress and structural violence on depression of African-Americans in Tuscaloosa, a study doctoral student Lessye DeMoss is planning to update for her dissertation work. More recently, Kathy Oths studied the local farmers’ markets in conjunction with student researchers, investigating the intersection between the culture of the green movement and the nutritional impacts of fresh fruits and vegetables.

Students Ashley Daugherty, Caitlin Baggett, and Linnea Moran conduct an assessment at Head Start. Photo courtesy Sarah Elizabeth Morrow

Students Ashley Daugherty, Caitlin Baggett, and Linnea Moran conduct an assessment at Head Start. Photo courtesy Sarah Elizabeth Morrow

Jason DeCaro and collaborators received a grant last year to assess the efficacy of Head Start in Tuscaloosa County. This biocultural study integrates student researchers from across our university. In the fall 2014 semester alone, according to graduate coordinator Sarah Morrow, they involved over 100 undergraduate researchers in the project.

I train undergraduates in neuroanthropology by involving them simultaneously in multiple projects coordinated by graduate students, some of which focus on ethnographic methods while others are more social psychological in nature. The goal of this approach is to provide students breadth of exposure through projects that are catchy. For instance, master’s student Johnna Dominguez recently defended a biocultural thesis on the social and immunological impacts of tattooing among southern women. Graduate student April Boatwright is collecting qualitative data about fireside behavior to complement physiological data we have assembled over the past several years. Juliann Friel is assisting in studying the influence of evolution education on emotional physiology. Andrew Bishop, now a Ph.D. student at Arizona State, assisted me in a social study of religious-commitment signaling in churches. Jonathan Belanich, currently at Mississippi State, has been helping with a study of self-deception and mating success. Perhaps most attention-grabbing, Erica Schumann integrated training in animal behavior and human sexuality to test a hypothesis about cunnilingus by watching bonobos at the Fort Worth Zoo.

Involving undergraduates in research is certainly not unique, but many of these experiences would be lost to posterity if there were not publishing opportunities. The quality of undergraduate training experiences are significantly enhanced through them submitting work to journals like JOSHUA: The Journal of Science and Health at the University of Alabama, EvoS Journal, andNEXUS: The Canadian Student Journal of Anthropology. These peer-reviewed, undergraduate journals provide invaluable services to the discipline by enabling students to hone their skill sets and take greater pride in their work.

This emphasis on pre-undergraduate and undergraduate development will enhance the anthropological perspective of the general public and make the complexity of culture more comprehensible.

This post originally appeared in Anthropology News‘ June 2015 “Knowledge Exchange.”

What’s Biological about Biocultural Research? (Part 2)

We inhabit an academic universe of disciplines, sub-disciplines, and sub-sub-disciplines guarding their borders. Holism is not dead, but we struggle with what it means.

If biocultural research is to be useful, it needs to be inclusive, flexible, and not defensive. For instance, many researchers in the positivist anthropological sciences rail against or just ignore theory and practice Foucault’s biopower, the de-colonization movement, or critical medical anthropology. Yet one of the compelling features of anthropology is that every foundational assumption can and should be examined.

Biocultural research has the potential to be a transactional phenomenon without a set trajectory. By transactional I mean we converge on understanding human experience that incorporates the subjectivity and physicality of the body in the world and describes exchanges among them. Every element of human state regulation, from gene regulation through neuronal firing patterns and hormone release to complex phenotypes like a disease state or  developmental outcome, is shaped by subjective experience, meaning it is shaped by culture.

Yet research design should target specific biocultural transactions. I propose a rough taxonomy of ways biology can be incorporated into biocultural research:

1)   Biocultural by theory. Strong research programs are grounded in theory, and biocultural research must include biocultural transactions, as research by our Alabama graduates demonstrates. Tufts U medical student Catherine Buzney and I drew from life history theory, to hypothesize and interpret linkages between childhood stress and pubertal timing. In another study, I used ecocultural theory to interpret child stress response patterns and young adults’ physical activity. Mississippi State U Assistant Professor Toni Copeland examined health outcomes among poor HIV-positive women in Kenya through the lens of structural violence. Rick Brown and East Carolina U Teaching Assistant Professor Blakely Brooks built a cultural epidemiology of Type 2 diabetes and Susto, respectively. Bill Dressler, Kathy Oths, Utah State U Assistant ProfessorFrancois Dengah use cultural consonance theory to bridge cognitive culture theory and stress theory and to examine how cultural meaning shapes arterial blood pressure, depressed affect, and body mass. Within this theoretical pattern, these projects are firmly founded in some well-developed theoretical framework that demands reference to the human body and its workings.

2)   Biocultural by outcome. Theory may encourage examination of transactions between subjectivity and physicality of the body, but it’s still necessary to actually study those transactions. In our program, we emphasize testing of hypotheses concerning measurable health outcomes. These can be physiological, such as U of Florida post-doc Sarah Szurek’s findings regarding glycemic control, Bill Dressler’s work on hypertension, or work that Chris Lynn and I have done regarding immune function. The outcomes may be implicitly biological, such as Kathy Oths’ work on bone setting and Debilidad. Because this research benefits from quantification, mixed-methods approaches are essential to biocultural research. Biocultural anthropologists build those statistical models on an ethnographic foundation.

3)   Biocultural by marker. I noted previously that biomarkers are neither necessary nor sufficient to a biocultural study. They’re still pretty darn useful, though. As I use the term, a marker is distinct from an outcome in that it is not the target of inquiry but helps to describe or quantify another important but less measurable variable. Cortisol, for instance, is a marker of stress but not stress itself. C-reactive protein is a marker of inflammation. Genotypes, too, are markers of gene expression and variation in biological function. Serotonin receptor polymorphisms are markers of biological sensitivity to adversity.

Depending on study design, sometimes markers can serve as outcomes. Chronic inflammation can be a marker of pathogen exposure or an outcome of interest. Blood pressure can be a stress marker or an outcome measure of hypertension. Research can be biocultural by marker when the biomarker serves as a tool to address a question otherwise inaccessible to study.

4)   Biocultural by extension. Research can begin with a biological outcome but lead in a direction that encourages a less direct approach to biology. This is a satisfying upshot of biocultural research because it concerns the development of an entire research program rather than a single study. Current Alabama doctoral student Martina Thomas began her research by examining cultural models concerning body image among African-American adolescents and mothers in a low-income community with high obesity rates. She found that body image, rather than being strictly concerned with shape or size, was bound in a complex model involving social relationships, material possessions, with behaviors including respectfulness, drug use, and gossip. There were hints regarding perceptions of what a person with AIDS looks like from which Thomas built an entirely new study examining HIV/AIDS models and social ecologies of risk. This research is not only biocultural by outcome but also biocultural by extension. It follows a trail of evidence leading into social and behavioral research without direct measurement of biological markers or outcomes, and there is no wall preventing the researcher from following along.

5)   Biocultural by interpretation. Finally, research may be interpreted in light of human biology without measuring it. Francois Dengah and Chris Lynn did work concerning dissociative states evoked in Pentecostal rituals. They don’t measure the neurobiology of dissociation, but they know about it, interpreting their findings in light of neurobiology (and stress biology, which Lynn measured and Dengah inferred). A hallmark of neuroanthropology is the interpretation of cultural and social experiences (from cancer survivorship to drug use and sport) in terms of neurobiology.

Anthropologists have an advantage as we get outside of the lab and learn about lived experience. We examine questions that no other discipline is equipped to handle, but only if we’re prepared to transgress boundaries. Otherwise, we may as well let the physiologists do it. After all, they have more money and fancier toys.

This post was previously published in Anthropology News’ June 2015 “Knowledge Exchange.”