Getting messy: ethics and reconnecting

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There is a lot going on at the moment. My life is messy. It’s crowded with personal upheavals, work issues, family trips, kid stuff – the usual and then a bit more. We’ve had wildfires in British Columbia, the sun was hidden in an orange shroud, and the air smelled like smoke. It seemed apocalyptic.

In the middle of this I am working on my research ethics application and reconnecting with my participants before meeting them in person in September. I am doing this in another province, with limited time.  In the past when I have done interviews I have sent an invitation, an email, advert, sometimes used a personal connection – followed by the arranging of a place and time. Somewhere in there I would send a consent form, to be read before we talk. The interaction would be approached as the interviewer trying to find the “truth” by extracting it from the empty vessel of the participant*. To avoid bias, I would strive to stay as neutral as possible – making noncommittal noises of encouragement, smiling (being careful not to lead) but not contaminating the pure data with my personal thoughts and feelings.

This time is different.  My participants and I are friends, we have histories. The shared stories we hold in common are the heart of the co-created research endeavour. Among the chaos of everyday life I am picking up the threads of our past. But it isn’t as easy as sending an email and arranging a date. Time must be taken to weave our lives back together. Most of the many exchanges so far are catching up, how are the kids? Did you hear what happened to so-and-so? Still at the same house, oh, thinking of a move? It feels like getting back to the place where we are comfortable with each other, reactivating memories that have been dormant – in some cases for many years.

My ethics application is focused on obtaining consent, storing the data, issues of confidentiality and so on.  Often we think of ‘getting ethics’ as a onetime hurdle to surmount, but my research plan doesn’t fit well with that. In autoethnography,  ethics are ongoing and pervasive and the concept of anonymity is a slippery one. These so-called relational ethics require us to “act from our hearts and minds, acknowledge our interpersonal bonds to others, and take responsibility for actions and their consequence”**.  Participants are friends, not subjects/objects to plunder for information and leave hollowed out. We have a duty to tread lightly, to be honest with each other and to work with love and respect.

As I begin this I also realize I am bringing my participants back into focus, as people with autonomy and lives as messy as my own.  One is deep in a work project, our meetings will have to fit around that, but their project is part of my work reality as well – I want to help it succeed.  Another has family issues and there are multiple responsibilities, anticipating next month is hard as everything is in flux. My Type-A self has to take a back seat, chill out, wait my turn. It’s hard! Although I haven’t even downloaded the recording app on my iPad this is getting messy. But messy is where the good stuff is.

*Holstein and Gubrium, 1995

**Ellis, 2007 (p.3)

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What is doctoral impact?

During the “trying to find a supervisor” period of my early EdD I met a few UBC professors for “bad academic first dates”. One of whom was a well known LGBTQ researcher who has done some wonderful and creative work in cancer care, and has written/blogged about their own cancer experiences. I was steered in their direction by several people who told me, “you must have heard of XXX, you would love their work”.  We did meet, but I wasn’t sure at that point exactly what I wanted to do and certainly didn’t really know what to ask of a potential supervisor. I was also worried that I came across as a stumbling imbecile! Apart from this blog, I hadn’t really written or spoken about (what would become) my research subject and was still wondering if I would be able to tackle it at all.

The development of learning through a professional doctorate (although for me incomplete and in progress) is partly gaining confidence to use your voice. A lot of us (women, people in traditionally marginalised populations) are used to being either ignored or actively silenced. Finding the courage (and having the support) to speak up was, for me, a huge part of my growth. I don’t think I would have been ready to do this work before now and certainly not without the framework offered by the program. I was asked the other day why I was doing the EdD. Would I get a teaching job, a better position? I usually say something neutral, as I am pretty sure those weren’t my motivations – but as I opened my mouth I suddenly realised why. I have wanted to do this research since I finished my Masters 15 years ago. There have been a couple of aborted attempts. One as a survey (not the right fit) and one with a colleague as a series of interviews (we were both too busy with other things, and nervous about the subject matter). I always felt it was too niche, too personal. I was doing it for the wrong reasons. Because I had struggled at times with being a lesbian and being a radiation therapist didn’t mean it was an issue that affected others. It was just me.

It took 6 courses, 2 electives, numerous papers and a lot of reflection for me to realize that just because it is personal, doesn’t mean it isn’t important. Just because it is difficult, doesn’t mean it shouldn’t be done. Part of the ongoing work is related to my own identity, which is relevant and enriches both process and product.  And (as my comps exam chair reminded me) it isn’t bias, it’s positionality!

So, apart from personal growth, confidence and the ability to speak openly (and, some would say, endlessly) about sexual identify and being out in the world – what has been the impact? Academically I could cite one publication, and a four keynotes/invited talks (Australia, UK, Canada) and this blog which has had more than a thousand visits. But is that the spirit of the EdD where the intent is to intensively study and (hopefully) affect/improve a problem or set of circumstances in practice?

I was at work last week writing an email to the same UBC professor I met almost two years ago. I was writing on behalf of a group looking to improve the experience of underserved populations. A few months ago, when there was a call for suggestions regarding what “underserved” populations should be looked at first, I had the knowledge and confidence to step into the silence and tell the group how some LGBTQ people have a hard time in cancer care. I said that I had written an article, did they want to see it? Also done a few talks and I had some good resources I could share.  The group agreed and we went ahead, steered by evidence and passion. We’re a new group, and it is early days. The first step is to ask how LGBTQ people have experienced us/the agency and how we could do better. I am convinced that this community outreach (including looping back to UBC) will make a difference and change how we care for LGBTQ patients – most importantly that they will finally be seen in our system. I had a moment of fierce pride as I sent the email. To me THIS is what impact looks like!

 

 

 

 

 

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*This blog was inspired by Janice St. John Matthew’s recent series “The impact of my doctorate” . Thanks Janice!