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.