Acts of cannibalism and homosexuality

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I’ve written previously about the tension, excitement and uncertainty that accompanies researching/talking about/writing about LGBT-ness. Way back last summer we read an excerpt from a book Covering by Kenji Yoshino. It’s a lovely piece about a gay academic, lawyer and professor who initially “passes” as straight – but after a few years comes out. However, he still limits his public actions such as displays of (same-sex) affection, and self-censors what he writes about. Yoshino says “this was not the same as passing, because my colleagues knew I was gay. Yet I did not know a word for this attempt to tone down my known gayness.”  His revelation (and the perfect word) comes after reading Erving Goffman’s book “Stigma“. Goffman describes how groups with “spoiled” identities (such as the elderly and the disabled) make a conscious effort to downplay their stigma by what he calls “covering” (or “not shoving it in people’s faces”).  Yoshino says “this explained why I wasn’t done with conformity to straight norms when I came out of the closet. The demand not to write on gay subjects was not a demand to pass. It was a demand to cover.”

I also read this with a loud “aha”! That’s what it was called – this self-stigma, the desire to fit in, the “not flaunting it”, this covered life. And what I was doing now was fully uncovering – being more of who I was, and now my uncovered eyes would be seeing a whole lot more.  This turned out to be true!

I am co-authoring a paper on LGBT health care – my part is a reworking of a paper from our policy class. My co-author (Sean Ralph) is a clinical therapy radiographer and researcher from the UK who (among other things) facilitates support groups for MSM* with prostate cancer. His input has made the paper about a million times better, more readable and a lot more practical. The paper presents a lot of background, and three main categories of suggestions for improvement. These are changes to the physical environment, improvement in health/intake forms and staff awareness/sensitivity training. In the last few weeks, Sean and I have both been advocating for some of these changes in our respective places of work. Here’s a quick recap of our progress so far:

  1. Changes to the physical environment: Our paper says: “if the department is involved in any health promotion/awareness campaigns then these should contain inclusive imagery and language”. What happened at work:  one of us raised the point at a meeting that we should include LGBT faces in a poster advertising emotional support for cancer patients, the response was “well, any of them could be gay” and “that would be stereotyping.”
  2. Improvement in health/intake forms: Our paper says: “including information about sexual orientation and gender identity on intake forms is important to help health care professionals (HCPs) better identify the patient’s health needs and social situation and provide better care”. What happened at work: at a meeting of a group revising the organisation’s intake forms one of us asked about adding sexual orientation to the form. The response was “we might upset people” and “why would we need to know that?” One participant pointed out that if we identify LGBT people on a form staff may then discriminate against them.
  3. Staff awareness/sensitivity training: Our paper says: “unfortunately, many LGBT HCPs have experienced discrimination at work and many health care staff say they don’t feel able to challenge discriminatory language or behaviour”.  What happened at work: at a meeting to discuss a new electronic record, one of us raised the issue of having non-binary gender options (not just male/female). The response from the IT person (when the questioner was out of earshot) was to laugh and say “why don’t we also have a section for people who have sex with animals?”

I am not using these examples because I think where we work is particularly bad.  I don’t. Most people are genuinely well meaning (except for the idiot in IT, he is obviously a dick). I use them because they are pretty typical – and because it takes effort and energy to bring these things up….and then to keep bringing them up. This is the act of uncovering and it is neither easy nor comfortable.

So – what about acts of cannibalism and homosexuality??? That popped up when I was reading The Self we Live By**. The authors are discussing an ethnographer, embedded in a South American tribe who observes the aforementioned shenanigans.  It’s more than a bit homophobic – but makes a great blog title.

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*Men who have sex with men

**Thank you Angie Eddy!

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Rethinking evidence

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We are now embroiled in a research methods class. As good grad students, we’re tasked with reflecting on our experiences with research (or actually “reflecting on ourselves reflecting….which is all a bit meta for me). It was a useful exercise before we start trying on some theories and approaches for size over the next year. My instinctive “what does research mean to you” landing spot was evidence based medicine/practice. As a radiation therapist (and allied health professional) EBM is infused in our work. We all know the ubiquitous evidence pyramid crowned by the king of evidence, the meta-analysis. The ultimate distillation of all that lovely hard data from those meticulously carried out randomised controlled trials (RCTs). EBM – coupled with the patient’s preferences and the physician’s clinical judgement will deliver beautiful, neutral, quantitative, value-free answers to all our tricky questions.

Except, of course, it really doesn’t. EBM gives us a set of rules that work sometimes, for a certain group of people. And what do we mean by evidence? What about other, less quantifiable factors? What about qualitative research? How, exactly, do we incorporate the patient and provider’s viewpoints and experience? Even as I wrote about the valorisation of EBM – I felt a creeping sense of unease. There was no way I was going to get away with this, in a university full of post-positivists and in a classroom full of educators.

And….even a cursory look around reveals some interesting counter arguments. Firstly, there’s the feminist lens that challenges the positivistic concept of a true detached and neutral observer of events.  Indeed what we mean by “observer” is arguably limited to a small group of educated and privileged white men. Empirical epistemology (foundational to EBM) reduces gender and other differences to “bias” which excludes and perhaps even harms women. Female research also over-focuses on reproductive related issues and fails to investigate gender-dimensions of other illnesses (such as HIV/AIDs research, heart disease, depression and TB). There is a well-documented male enrollment bias in clinical trials. How much faith would you put in that evidence-based cardiac disease guideline for a 50-something female now?

My old friend phenomenology also has something to say. The argument rests on the way we divide people into mind and body – science mostly concerned with fixing the body. The so called subjective features of illness are usually deemed unimportant by clinicians but are vital to the person’s experience of their illness. Treating the patient, not the disease, would actually be “patient centred care” and the person’s experiences, stories and ways of seeing the world would all become important parts of the diagnosis. This type of “evidence”, however, has little place in EBM, despite the development of “shared” decision making and other attempts to incorporate patient’s values. The evidence that is given precedence (RCTs and meta-analyses) might not be as reliable as we think; there are a number of biases inherent in both that include (ironically) a lack of evidence of efficacy, and a limited usefulness for individual (not aggregated) patients. Additionally – methods that might pick up phenomenological factors (qualitative, for example) have no place in the EBM hierarchy. I love the recent paper by Eakin, where she states:

“it is indeed transgressive to practice qualitative research within the medical and health sciences – a land in which the randomised controlled trial (RCT) is considered the apex of the methodological food chain, and where evidence based practice (EBP), a creed anchored in quantitative measurement and epidemiological reasoning, has been widely embraced across the clinical professions” (p. 107).

The readings and discussions we’ve had in class have solidified my feeling that EBM is a useful tool, but also that it “does not increase objectivity, but rather obscures the subjective elements that inescapably enter all forms of human inquiry” (Goldenberg, 2006. P. 2631). As health care professionals, when we claim that we need to make decisions based on “evidence” – let’s be careful about what evidence we mean and why. Evidence-based and best practice are not always the same thing.

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Informed by these readings (if you want one, pick Goldenberg!)

Cohen, A. M., Stavri, P. Z., & Hersh, W. R. (2004). A categorization and analysis of the criticisms of Evidence-Based Medicine. International Journal of Medical Informatics, 73, 35–43. http://doi.org/10.1016/j.ijmedinf.2003.11.002

Eakin, J. M. (2016). Educating critical qualitative health researchers in the land of the randomised clinical trial”. Qualitative Inquiry, 22(2), 107- 118.  doi:10.1177/1077800415617207

Goldenberg, M. J. (2006). On evidence and evidence-based medicine : Lessons from the philosophy of science, 62, 2621–2632. http://doi.org/10.1016/j.socscimed.2005.11.031

Greenhalgh, T. (1999). Narrative based medicine: narrative based medicine in an evidence based world. BMJ (Clinical Research Ed.), 318(7179), 323–325. http://doi.org/10.1136/bmj.318.7179.323

Rogers, W. (2004). Evidence-based medicine and women: do the principles and practice of EBM further women’s health? Bioethics, 18(1), 50–71. http://doi.org/10.1111/j.1467-8519.2004.00378.x