LGBTQ representation matters: images, patient material and safe spaces

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I love this image of a smiling person with their dog (SPWD) used by Macmillian in the UK as part of their support for LGBTQ people affected by cancer. I don’t know how SPWD identifies sexually or what pronouns she (?) uses that fit with her (?) gender identity but as well as looking happy SPWD does look distinctly….non heterosexual, dare I say queer? I think she/he/they would firmly fit under that wide umbrella definition. Why is this important and why do I care? I’ve been pondering representation (visual and otherwise) lately as I dive into my dissertation and a recent discussion at work has got me thinking.

I’m part of a group looking at LGBTQ patient experiences, and how we can make them better. Actually, there is a lot of solid evidence out there so the HOW isn’t really the question – it’s the WHEN and the WHY DON’T WE that preoccupy me.  Very broadly we know that improving intake forms (asking about sexual orientation and gender identity); making the space welcoming (signalling safety) and educating staff are three key areas. Where I work, I am really happy to say, we’re starting to change all of these things. We’ve amended our intake form and we have some grant money to develop staff cultural competence training. Training is really important – if we’re asking about sexual orientation we need staff to understand why, and how the information is relevant to that patient’s care. It’s also important to teach people why LGBTQ people might feel uncomfortable in a hospital or clinic, why they might be reluctant to come out and why just seeing a “safe space” sticker (or a rainbow pin on a staff member’s lab coat) might help a tiny bit.  Cultural competence training is important because that pin or sticker means nothing if we then misgender that patient, or fail to recognize their “friend” is actually their partner of twelve years.

What does this have to do with SPWD? My meeting was to look at the results of a review of some patient education material routinely given to patients. The booklets and pamphlets were examined to see if they were inclusive for sexuality (LGB) and gender (T). The best example was a pamphlet for screening for cervix cancer which listed groups of people who should be screened that included:

  • Women in a same-sex relationship and
  • “Transgender individuals” with a cervix

Great! The worst examples were the very, very pink flyers for mammography that didn’t list men (including trans men) as possible candidates and were full of infographics that used (pink) skirted female icons and photographs of very feminine women of various ethnicities.  None of this was very surprising.  What was surprising was the general consensus in the room that the organisation had done their best, there were only so many “populations” one pamphlet could cover (replacing one of the several femme women with someone like SPWD wouldn’t be hard) and….adding same sex couples and/or people who visibly flagged as queer might signal to heterosexuals that this material isn’t aimed at them. That was my favourite. As if I wouldn’t pick up the booklet that was asking me to donate money because it had a bride and groom on it, or the booklet on sexuality and cancer that had no obviously queer couples (that’s a bad example, most of our material has little or no useful information on queer sex).

These examples might seem trivial, but they are part of the landscape in our cancer centres and hospitals. They matter. They signal that we have thought about being inclusive, being welcoming and are willing to move from our positions of “it’s good enough” to “we could do better”.  Yes, there is only so much we can do but next time we redesign a booklet, or edit an instruction sheet we can also make sure it isn’t just one more barrier for our LGBTQ patients to climb over.

Image: Macmillan Cancer Support, UK

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Things get personal

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The long gap since my last blog has been niggling at me. It’s not that things haven’t been happening, it’s more that too much has been happening. I started a blog about “impact” a few weeks ago that got way too intense too soon. Then I questioned why I hadn’t posted it, and who was my audience? I went into an introspective spiral about how the tone and purpose of this blog had changed over the last two (!) years. It’s shifted from a light-hearted look at a new university world to what it feels like to be emotionally invested in your research. It’s become very personal. We use the word messy a lot in class, that’s because this stuff is messy, it spreads and gets everywhere so I shouldn’t have been surprised.

In the last six months my marriage has ended. The course wasn’t the main cause, but it helped knock out a few foundational supports. Despite the fact that my ex-wife has been such a large part of this work. I’ve bored her to tears with stories and drafts, agonised with her about whether I could do it and drained our joint finances with school fees. I told my supervisor about our split, she said “Yes, that happens a lot with this kind of study”. I jokingly said there should have been a release to sign but I probably would have risked it anyway. It really wasn’t the kind of impact I had expected.

It’s been a seismic event; the ripples are still rattling the windowpanes. As we move into the new part of our lives my ex-wife and I find ourselves looking at what it meant to be married, what it means now. We’re trying (as many couples do) to remember why we were together in the first place, and we’re largely succeeding. We have new partners, we’re working out how to live this new way without regret or rancor.

I find myself looking at assumptions that are at the centre of my research question in light of these changes, what does it mean to come out now in 2018? What does it mean to be a lesbian outside the safe harbour of a marriage? What does this mean for my sexual identity? Anything? Nothing? Doing my interviews last year, I was back at the place my marriage began. There were echoes of it everywhere, the offices I worked in, the people I knew who asked about my wife and the boys, my participants who knew us as a couple for twenty-something years. How does this affect my data, I wondered like a good qualitative researcher, my strong emotions and this bittersweet sense of love and loss?

I figured, I can let this paralyse me, stop writing, wallow for a while. Or I can realise that this is all part of it. Whether it’s a job change, a child leaving home, the end of a relationship – it’s happening all the time to all of us. I remember hearing stories from our previous cohorts and feeling smug that nothing like that would happen to me. I forgot the fundamental rule that life is fragile, full of the unexpected.

There are, of course, no easy answers but I move forward, juggling this as one more thing. I want to continue this blog, but needed to be honest about where I am. I’m hoping sharing this will unblock me and set the stage for the next and final part of the process, writing up my dissertation. As always, stay tuned!

Things don’t work out as planned

 

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According to my proposal timeline, December is when I am working with my participants back and forth with their written transcripts. The idea was to co-create something based on their continued reaction to the discussions we had, to build on the original chats over coffee and tea, in offices and borrowed spaces, to merge our four perspectives into a unique representation of an often-unrecognised issue in the workplace.

It hasn’t worked out like that.

Our discussions were amazing, rich and full of detail. I felt like I had space to tell my stories as well as hear theirs, and many of the threads naturally connected. Our past histories were sometimes shared ones. I also heard some things that surprised me, made me doubtful, made me sad. The typed-up transcripts are lengthy, and I sent them back with the request for my participants to “engage with them”. What happened shouldn’t have surprised me. There were very few changes, a few typos or misspellings were pointed out. A couple of nice comments (I really enjoyed this process, thank you) but I was left with the feeling that this wasn’t going as planned.

Panic! I looked at my consent, at the emails I had sent to my participants, at the messages we’d exchanged on Facebook. I thought I had been really clear – I’d taken time to talk about how this wasn’t a typical interview, we were creating something together, it would be a commitment – take time and energy? Are you sure you are up for that? They’d all agreed!

I looked at my proposal. I’d been (deliberately) unclear about how this next part was going to go. I am used to thematic analysis in qualitative work. I had vaguely thought I’d sort the “data” into themes, maybe write some kind of story per theme? I had hoped that one of my participants would maybe volunteer to write a sonnet, even a haiku? When I teach or talk about qualitative research I always joke that the sections on analysis in text books refer to themes “emerging” – like mushrooms overnight. When in reality it’s a slog that taxes your brain and patience. Less art, sometimes, than persistence and rereading until you can quote your transcripts by heart. Anyway, nothing was emerging here unless it was a creeping sense of dread.

So I went back to the books and articles about authoethnography. HOW exactly is this supposed to work? There is a lot about the craft of writing, characterisation, action, context and resolution (or perhaps a point or moral as not all stories can be resolved). I am told that narrative is always unfinished, there is a “back and forthing” and a constant negotiation of relationships, transactions, truth and ethics. How I use other people’s words and stories is flexible, as long as I am respectful of their truths, and we negotiate the narrative together.

I am also instructed to go off and read, because we write what we love. So I pack up my short stories, my Wintersons, my Atwoods, my Munros for a long plane ride. Remember that I love feminist women, brave women who write from the heart. Rediscover the skill and clarity in good short fiction. This was enjoyable, but not getting it done (I think), not solving my problem.

Then one morning on the long drive to work I turned off the radio and let my mind mull it over. I realised a few things. It took me two years to grasp the idea of writing fiction as research, joining my own voice with the participants, having a conversation and not a one-way interview where I said as little as possible. Adding a paragraph to a consent form – and my own passionate, but possibly less than clear, explanations – probably won’t do the same job no matter how well meaning the participants are. What did I expect? I’d written about how much people had accommodated me and how much as this work they had done in the spaces of their busy lives. If I was living in the same city it might be different, or not. But regardless I needed a new way forward.

So – I decided to write a book (a short one!), that is embedded in my dissertation. I’d like to have illustrations, intersperse short stories with some poetry, maybe a graphic section. I see a cover, a preface, a contents page. I’d like it to be removable, stand-alone – so it could be read for its own merit and hopefully shine a light into the world of the four of us whose stories are told. I’ll share the writing as I go with my participants, but I am also going to meet with them as a group next year and read it with them. See how they respond, gather their ideas and perhaps reshape it. The book will be my results section, perhaps my discussion if I add the “whys and hows” of each piece into the text.

So things aren’t quite going as planned. But that’s what happens. I love my new idea and hope I have the literary skill (and patience) to pull it off. I also love that this doctorate allows me to stretch, to explore part of myself that perhaps would never have been able to unfold. In the middle of all the self-doubt and life-demands I try to remember that.

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Some autoethnography references:

Behar, R. (1997). The Vulnerable Observer: Anthropology That Breaks Your Heart. Boston, MA: Beacon Press

Clandinin, D. J., & Connelly, F. M. (2000). Narrative Inquiry: Experience, Story in Qualitative Research. San Francisco, US: Jossey-Bass.

Connelly, F. M., & Clandinin, D. J. (1990). Stories of experience and narrative inquiry. Educational Researcher, 19(5), 2–14. https://doi.org/10.3102/0013189X019005002

Ellis, C. (2004). The Ethnographic I: A Methodological Novel about Autoethnography. New York, NY: AltaMira Press

Signals of safety: LGBT visibility at work

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My blog inspiration today comes from an exchange this morning on Twitter. The original tweet was from @radiographerben who posted a poll asking if people would be comfortable wearing a pin “advertising” their sexual identity and/or gender orientation like staff at Marks and Spencer in the UK are able to do.  There were a few options from “sure” to “er, no”! Comments varied from my straight out “hell yes” to more cautious responses, including @SophiaEThom’s concern about dealing with possible reactions from patients. The badge in question identifies the wearer as a member of the LGBT+ at M&S employee network and supports Stonewall’s amazing Come Out for LGBT campaign which encourages visibility in all areas of life.

Stonewall (a UK group who support LGBT people) also run a Diversity Champions program for workplaces.  They cite that LGB employees who are comfortable being out at work are 67% more likely to be satisfied with their sense of achievement and trans employees 77% more likely to be satisfied with job security.  While this type of initiative and workplace training is becoming more common in the private sector, healthcare workplaces are slower to catch up. Often the focus is on improving LGBT patient experiences, and there is a lot of work to do in this area. When we look at LGBT staff, the picture is less clear. Being out at work is important, but how out are we when we work with patients? Do we think, like one physician participant in a UK study that:

 The hospital is not ready…for a camp acting doctor…because it brings sexuality into the public eye, and is the workplace the right place to do that? I think the answer is no because it’s at the expense of the patients.

LGBT staff routinely manage their identities at work, in a way that some other marginalised groups aren’t able to. We have the choice (usually) to come out or not – to pass or tone down our sexual identity. The idea of wearing a badge or other signifier bypasses that choice and makes our identity visible, which can sometimes feel uncomfortable.

So, why bother? If we set aside the evidence that being open about who we are makes for a better work experience – why should we be open around and with patients?  As Sophia said, this brings an element of risk. Why open ourselves up to the possibility of a negative reaction, despite all our equality policies, diversity mission statements and the general feeling that it’s 2017 – and OK to be whoever we want to be? One reason might be that it makes it a little bit easier for our LGBT patients.

The 2011 Institute of Medicine report suggests that the barriers to equitable health care that LGB people face can “profoundly affect their overall well-being”. Our LGBT patients often feel invisible in a system that doesn’t see them for who they are.  We know there are steps we can take to make this better; one is having visible LGBT staff to care for them.  A nice example is this blog post by Roger Newman, a gay man living with cancer, discussing his experience in hospital:

I hardly dared mention a partner and I even found myself begging him not to kiss me when he visited me. His response, as expected, was ‘bollocks to ‘em, I love you’, but on his visits I could see the eyes taking it all in; sorting and codifying the resulting information. I found myself telling him that it was OK for him because he could take our lifestyle back home with him whereas I was left to deal with the consequences. I was profoundly disturbed by having these feelings and I felt guilty about them, but the fact was that there I felt and believed myself to be different. I pondered how much I would have loved to have had some ‘out’ LGBT staff around me, so that I didn’t feel so isolated and had more confidence to be me. Just someone with a ‘Me Too’ badge on them, would have helped.

I’ve also written about this before, and in talks I have used a clip from the Macmillan “LGBTQ experiences of cancer care” video series where Lesley (a lesbian living with ovarian cancer) discusses her discomfort with knowing some of her nurses were lesbian but closeted, when she could have used the support.

My research is about how the identity disclosure decisions we make at work might affect relationships, with our colleagues and also (perhaps more importantly) with our patients.  As I read through my interview transcripts, the daily (and often unrecognized) work we do to tone down our queerness is a common theme.  But my participants realize that our difference can make, well, a difference.  In an older post I quoted a paper by Riordan who wrote that LGB healthcare professionals may use their identity as a “signal of safety” to flag to LGBT patients that they are understood – in my opinion the use of a badge or lanyard is just that.

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After the interviews

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The feeling I brought back from my initial interviews was how much of grad work is done in the spaces between our normal lives. My cohort knows the reality of taking on a full time doctorate on top of …well, life I suppose. We’ve struggled with deadlines, negotiated our inevitable absences for family commitments and furtively checked work emails during lectures. We are all tired, maxed out and scraping by–it’s normal. Doing the actual research bit, talking to other busy humans and relying on their friendship and generosity as I asked them nosy and intrusive questions, that was a whole other level!

I had badgered my participants with emails, consent forms and FaceBook messages ahead of time – trying to explain that this wouldn’t just be one meeting and done. At a very conservative guestimate I told them it would take up at least 10 hours of their time. Two face to face discussions, reviewing the transcripts, commenting on the transcripts, looking at my interim texts and working with me to shape a coherent and (hopefully) engaging story from their three individual narratives.

To further complicate things, I’ve never done this before. I feel like I am making it up as I go. It’s hard to project a feeling of authority and confidence when I really have no idea what I will expect of them two months from now, nine months from now? More emails? Phone calls? Skype? Individually? Together? My results section will be this co-joint narrative – but as I slog through the hours of transcription I still have no solid idea what that will involve.

So, I was working in the spaces that are left, full of the uncertainty that I have –at the coffee shop interview at the end of the shift, the room found at the busy conference just behind the registration desk with the loud air conditioning, the friend’s house with the borrowed tea and cookies and more. My friends, my participants, made space for me – they drove miles to talk to me, rearranged meetings to spend an hour sharing coming out stories and arranged child care. I was acutely aware of their lives outside the coffee shop or the living room – they were all juggling prosaic day to day appointments with emotionally demanding major life events. Before the tape was turned on, and lingering after we had finished, we reflected on how young we had been when we first met and we shared our battle scars.

It is always an honour and a responsibility to hear and share stories doing research, but a humbling realisation to begin to confront the issues that enrich and complicate working with friends. Lisa Tillmann-Healy (2003) places relational ethics and “friendship as method” as a feminist practice with its belief that “the personal is political” and commitment to empowerment and social change. Friendship as method involves hope, caring, respect and justice. This kind of research is intensely personal, done with love, I didn’t really understand that before but I realise it now.

Image: Church Street (Toronto) cross walk