The following post was inspired by the twitter chat #dsma on June 1st. Diabetes Social Media Advocacy is a great organization in the diabetes online community that connects people with diabetes to the support they need via social media in many ways. The twitter chat using #dsma is one such method. With that said, this post is not diabetes-specific. It is rather, disability wide: chronic, physical, mental, acute, endocrine, and everywhere in-between.
In 2013, scholars Eve Tuck and K. Wayne Yang published an article called “R-Words: Refusing Research.” I linked to the article in PDF form below and encourage you to dig in. It is a very wordy and theory heavy article; consider this your warning.
In this article, Tuck and Yang break down theoretical reasons why study participants (often referred to as ‘subjects’) may refuse participation and how the researcher’s role and goals play into that dynamic. As I read it, I engaged in a process of reflection. How am I doing as a researcher? Am I accomplishing the aims I set for myself at the outset of my academic career? Will the fallout be ethical?
The Tuck and Yang article is poignant in many ways, but two things in particular stick out to me as a member of a researched patient community.
- A researcher sometimes acts as ventriloquist by taking the words and experiences of study ‘subjects’ and manipulating them into ‘findings’ that afford credit only to the researcher.
- Emphasizing pain-narrative alone in a study is an exploitative act that may retroactively harm the population under study.
The first message listed above hit me pretty hard. I am a researcher and my goal is to facilitate the excavation and dissemination of discovery and truth. However, to do this, I feel compelled to appeal to the requirements of scientific rigor. I wonder, what could be the alternative? Could methodology make a difference? I decided on the research approach called Participatory Action Research (PAR) because I wanted to avoid ventriloquism. The community members who volunteer are not puppets I use to explain a theory previously hypothesized. Rather, they (you/we), are the story, the evidence, the design, the conclusion. Without them/you/us, there is no study at all.
By doing research, I want to change the process of research itself. A person shouldn’t need a program, a MA, a PhD, to carry out a study. One ought only need curiosity and a well-inked pen.
Secondly, while my internal drive feels genuine, I cannot deny that doing this work may inflate my position in the academy (the ivory tower). Thus, researching the diabetes community and eventually other health communities cannot be considered selfless by any means. I have a professional stake in doing this, and my success does depend on you: people with bodies that function a-typically. Though, as I consider my position as a researcher, I cannot forget my own place within the we under examination here. I am a person with diabetes even when I am not researching. I, too, have a body that functions a-typically. My primary identity and loyalty lies with the community. I research to ensure our knowledge and discourse is recognized as legitimate. We already know the answers to why peer-support improves our management, to how connection brings us from a place of isolation to community, to why the #DOC came to be. We already know.
The Tuck and Yang article posits that researchers often function within “settler colonial structures.” This means that researchers use the social structure of research and the process of building truth (through studies) in a way that maintains power dynamics as they are. By focusing on the pain-narratives (diabetes distress scale as example) of patients with various disabilities alone, researchers keep patients right where they are: at the bottom of the power-ladder crying for help.
I’ve noticed a focus on pain in our own stories via blogs and twitter and I one-hundred percent understand why. We live everyday in the kind of pain that no one can see, pain that we are good at hiding, pain with no physiological origin. Raising awareness about how hard it is to live with chronic illness, diabetes, chronic pain, so on and so forth, feels like justice. It feels like recognition for the hard work we put in to do what everyone else can do without effort. It wouldn’t be right to do all of this without getting a little credit, would it?
Where are we left, however, when the questions asked by researchers stop at hardships?When only our distress is measured, everything we create to balance that distress goes unacknowledged.
When the resources we create go unacknowledged, they fail to reach our comrades who need that access for survival.
Organizations like DiabetesSisters, Diabetes Hands Foundation, and The Betes Org., work to expand that access. Yet, their validation and legitimation depend on a medical structure fixated on what doesn’t work.
I am left asking where our community efforts fit in? Where are we and what is the story we are telling as a patient community, as a group of individuals living with impairments? What can we do to move the emphasis of study from pain, suffering, and what doesn’t work to success, flourishing, and what does work? Further, if we found a way to do that, is it even what we would want?