The last couple of days I’ve been attending the Health Humanities Consortium conference in Houston Texas. The experience has been rather mixed for me, causing me to reflect on so many different things. One of the themes of the conferences was that of intersectionality. The idea that we all carry a variety of identities, and it is sometimes the combination that makes our experience important/special/unique.
It is my intersectionality that makes the sharing of my experience valuable. In part because my privilege and my abilities allow me the voice to share my story. I need to own my own identity. I’m a white, hetero, ’new’ scholar, Canadian, California resident, female, ‘young’ breast cancer survivor and someone with celiac disease …. and much more. Each of these things played into my experience at the conference.
I found myself challenged as someone who came to this conference not knowing anyone – new to this community and the scholarship of this community. My initial attempts to interact with people didn’t feel well received/reciprocated and this took a lot of energy from me. Something that I’m realizing that I have a lot less of post-cancer treatment.
I found myself as an expert from the ePatient experience – annoyed when I heard the rhetoric of “everyone is a patient” as those of us dealing with critical and/or chronic illness can attest that our experiences as patients in the healthcare system are dramatically different than those who experience temporary illness.
When I heard about medical humanities programs I found myself wondering if there was room for an ePatient stream. What do I mean by that? I mean that I don’t see a clear place for peer-to-peer patient experience, nor patient advocacy within health sciences. I see a need for an ePatient track – where ‘insiders’ have a space to explore their experience in an academic setting. I think health humanities might be the right place to place that type of exploration.
I find it interesting that it has never occurred to me that perhaps disability studies is the home for this type of work. I have never related to it, until I started typing this it had not occurred to me that there might be a place there. That being said, I don’t necessarily think of critical and/or chronic illness as disability. I feel there is a difference, but cannot figure out how to articulate it. Perhaps it is because I don’t think of my chronic illness as a disability (although technically both cancer and celiac are legally considered ‘disabilities’).
I found myself thinking, wouldn’t it be nice to see more ePatient academics presenting, or even ePatients who are not academics, to help balance the outsider perspective that is prevalent in the scholarly spaces. The problem is, those who are insiders aren’t necessarily willing to share their insider experience – especially in health fields where the predominant line of research asks that we be ‘objective’, denying our personal relationships to the discourse.
I found myself challenged by the food – or lack their of. I’m a celiac. It means I need a strict gluten free diet. The organizers did a great job of setting aside a special lunch for me, so that I had an option. The problem is, special often gets lumped together. I’m not sure if this is a caterer problem or a conference organizer problem. I am not a vegan. I need protein. I also don’t eat soy. I really really don’t like it when I get gluten-free bread in my GF meal. Why? Because I cannot tell – it is too easy for the GF bread to get switched for a non-GF bread. I really want a GF meal that LOOKS like a GF meal, one that has protein, and one that I can trust. The is hard when you are attending a conference that is out of town. It hard when there aren’t a lot of options that are within walking distance of the conference. It is an invisible disability. Dealing with food takes a LOT of extra energy.
At times, I found myself challenged as both a novice and an expert at the same time. I didn’t know where or how I might fit within this community – and yet I found the presentations I attended all captivating. I found myself relating more when then speaker quoted the seminal characters in education and critical theory – in part because I have some background there. I struggled more when the links where to literature, having never taking a lit course!
My thoughts came full circle today when I attended a session today where several scholars talked about teaching using Audre Lorde’s The Cancer Journals. I’ve been thinking of writing a piece that juxtaposes her diaries with my experience. When the first scholar talked, I found that I was questioning myself. Who was I, someone who did not share her intersectional identity, to compare my experience to hers? Why would I have the right to do so? But then I thought, I’m allowed to have my experience. My intention with such a paper is to describe both the differences and similarities to our experiences. I think the exercise will be useful, even if it doesn’t result in a paper.
Although I had a mixed experience with this conference, I do plan on attending next year, largely because it is at Stanford – which means I don’t need to travel. It means that I can sleep at home, but also that I can easily pack my own meals. Having more energy to experience the conference itself, rather than dealing with all the energy (and pocket book) sapping issues associated with conference travel.
I’ll be thinking a lot more about this experience and my intersectionality as I consider where I might end up when I finish my PhD.