I came to the Master of Arts in Cultural Studies program after nearly nine years of volunteer advocacy in the disability field, work I embraced after my daughter was born with Down syndrome. As an infant, she was the target of prejudicial statements and medical decisions, simply because she was born with an atypical arrangement of chromosomes, and as I learned to speak up for her, I resolved to actively combat bias toward people with all disabilities. As my daughter got older, I became aware of the struggles facing children with disabilities around the world, and began to explore the possibility of contributing my time to this issue. I found that organizations engaged in this work weren’t interested in collaborating with a parent focused on outreach to other parents. Even in the disability field, many grass-roots efforts were not taken seriously, because they didn’t fit certain ideals of research-based practice.
Like many white, middle-class housewives, I saw two ways to accomplish my goal: start a nongovernmental organization (NGO), or go back to school. That’s how I came to be in MACS, with a singular focus: to learn the ways of research and academia in order to support international work on behalf of children with disabilities. I believed Cultural Studies to be a purely academic practice, a world of theory, serious reading, and research that fit into tidy, occasionally creative, boxes. I viewed this academic grind as a necessary evil, something I needed to conquer in order to legitimate my “real” work. These worlds were divided, and I saw myself as a doer, a woman of action, not an academic.
This view was rocked in my first quarter. Words like “praxis,” “intervention,” “political,” and “performance” became part of my Cultural Studies vocabulary. I read Lawrence Grossberg, who said, “In a sense then, one cannot choose not to change the world, for that choice is actually a choice to leave unexamined and unchallenged the existing relations of power, certainly a political choice. The only choices are how self-consciously one approaches this work, and to what end.” I was introduced to the idea that Cultural Studies itself could be an intervention, an articulation of analysis and action.
As I began to design my Capstone project, I tried to approach it with praxis in mind – action guided by theory. My grasp of this concept deepened through work I completed for different classes, especially a commodity chain analysis for a globalization class (click here to view). I used this mapping project to present evidence that, viewed through the lens of international adoption, children are a commodity. The project broadened my understanding of the relationships at work in the issue of childhood institutionalization, and I wanted it to disrupt the institutional discourse around international adoption, pushing back against the idea that it is a purely altruistic institution that exists solely to find homes for parentless children. Disability Rights International, a Washington, DC-based NGO, currently uses one of my maps regularly as they plan trips to Ukraine.
Another piece of work that informed my research proposal was completed as part of an internship served with another NGO, Project TLC. This group asked for my assistance in designing a program that would provide hired caregivers to children with disabilities at a specific orphanage in Ukraine. The process of researching similar programs while learning about the causes of continued childhood institutionalization in Ukraine helped refine my understanding of the issue. In the final paper for this internship, I describe the program I designed: one that would provide assessment-based rehabilitative therapies for these children, while fostering community acceptance and social change (click here to view).
To me, this was Cultural Studies in action. I used my academic skills to analyze a problem and design what I believed to be an effective intervention, and I was excited to see the intervention implemented. For a variety of reasons, this has not happened, and I can’t help thinking I was a bit naïve to think I could decide what these children needed, and explain how to change Ukrainian society’s approach to disability, without having been there or spent time in an orphanage or institution. The experience leaves me wondering what we mean by a “Cultural Studies intervention.” Are we actually intervening, using our academic knowledge to interrupt systems of inequity? When is it appropriate for a Cultural Studies worker – one who is an outsider – to intervene on behalf of “the Other?” If we do see our work as an actual intervention, what kind of privilege does that invoke? Is it our place to make this intervention, or should we be supporting those who are affected by inequity in their efforts to disrupt the status quo? Prior to my engagement with Cultural Studies as a field, questions like this wouldn’t have occurred to me. Embarrassing as it is just a year later, I thought my “superior” level of knowledge and understanding were sufficient to allow me to intervene, especially in a “less-developed” country like Ukraine. My advisors encouraged me to consider these questions as I finalized my research proposal and began my actual fieldwork, and the questions continued as I moved into the work of my Capstone, which includes an article about my findings (click here to view) and the photo essay below, composed from photographs taken by my research participants.
As I transcribed the interviews I conducted in Ukraine, I became alternately obsessed with and troubled by the notion that I was going to give the families I worked with a voice. I have keenly felt my place as privileged American researcher, struggling with whether “a voice” can be benevolently granted to a marginalized population. I’ve concluded that the group of parents I worked with in Ukraine already has a voice, one that is growing in volume and effectiveness. As a writer and scholar, I am trying to provide a new, different space for their voices to be heard, a space that benefits me, as researcher, but also benefits these families and contributes to their work. My article attempts to privilege their work, presenting the idea that parents are actively resisting the stigma of Down syndrome by purposefully and visibly parenting their children in the community. Similarly, the photo essay is an effort to make Down syndrome in Ukraine visible, despite having been historically hidden away. I cannot give a voice. I can try to use my privilege to open previously closed spaces, and work to let participants speak for themselves.
Am I appropriately respectful in my representation of the families I worked with? I don’t know. I have learned that research with people comes closer to this goal than research on them. I also don’t know whether I can reconcile these ethical and political dilemmas to find a comfortable place in my work, but comfort has become less important than the self-reflexion and critical questioning that are now an integral part of that work. My time in the MACS program has shown me that this field is more than theory in a tidy box; it blends scholar with practitioner, and leaves space for positionality and personal bias. I came to MACS searching for ways to make my work relevant, equating “relevant” with “accepted by academics” or “publishable.” Because of the program, I’ve redefined relevance for myself. Whether or not my work is either of these imagined criteria, it must be thoughtful in its methods, useful in its implementation, and meaningful to my collaborators. The woman of action has embraced the academic: thinking can be doing, doing can be thinking, and both will shape my approach to the work that is ahead.
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