Search results for "bereavement "

Telling grief II

Author: joe

Tuesday, 27 March, 2012 - 22:34

From a lounge

Eventually it occurred to me that the problem lay in my attitude to representation. Somehow I was short-circuiting several thoughts: one, that an image of something represents the entire extent of its referent; a second, that an image of something is never an adequation of its referent; and a third thought, that, to the contrary, an image is just a slit in the fabric of reality, allowing the viewer in this world to prise their way into the world of the referent.

I think back and imagine myself looking at a sheet of A4, on which an aunt has printed some old family portraits. There is my father as a boy, amongst his siblings. There he is as a young man, long locks and an art-school waistcoat. Even with his boy-looks and tank-top short-trousers pulled-down socks, I can see the features and lines I know and love so well, the line of the jaw, the direct look, the eyebrows, the ears - the older face that hangs in my memory is all there somehow, unripe and waiting. I can imagine him before and after the still frame, though with an incongruously deep voice, turning to a sister and prodding the soft flesh of their upper arm, tongue grinning between teeth; or scrunching his shoulders up around his ears in a comic villain pose. He was frozen in just that pose in a photo from his wedding day, a jaunty, wry look on his face as though he were stealing a prize.

The images are openings into that world. I can see round the corners, watch movements play out: I can see how he walked on out of that freeze-frame, hear how he talked to the wedding guest with his head cocked on one side, scooped up a thrilled child in his arms; or as boy, see how he wriggled with impatience as the photographer prepared, or jumped up after the deed and ran out of the room chasing his brother. Of course the picture is an artificial and ephemeral fragment, just a flake of a sloughed off skin of time; but it is a metonymic record, connected to a real moment whose veracity I can taste, whose world I can sense, and whose bursting inexhaustibility is tangible. If only I could so fully inhabit the laws of physics, so attune to the workings of time and space, perhaps I could follow the path, molecule by molecule, causal link by causal link, back to that moment in the fullness of its presence.

So much for the photograph as a memento: an opening onto a world, into which I could leap. This is a photograph at which I look, as I can look at any - a snapshot of a stranger is also that much pregnant with a hidden, discoverable universe. I do not need to know the face or recognise the place: my imagination has already worked the details out before I'm even conscious of them, and start to dimly realise the scene out of frame, the events after shot, the state of mind, the ambiguous presence, the great swell of time. But against all this is the photograph I should be able to take. The image I should somehow produce must have the entirety of this world inside it, and placed there by me! It mist be adequate to the task of suggesting to the unknown, non-specific viewer, all the nuance and interconnected wholeness of the world from which it comes. What hope can there be of producing such an image?

I suddenly see that this unbearably heavy pressure is that of the author of the narrative, the one who must trust that the words written are just the right weaving together of threads, just the delicately correct choices of what to write in and what to leave unannounced but suggested by the lacunae, the gaps which themselves are the very spaces into which the narratee is invited, and which provide the room in which the imaginary fleshing out and habitation of the storyworld occurs. Who would want to be that author, the one who must commemorate adequately the life of the one they have lost? Who would ever feel they can articulate the loss? What memorial image or line of words would ever be adequate? Who wouldn't feel that their efforts failed to do justice, and didn't diminish the dead? Nothing I can say will ever be enough - and so perhaps the only thing to say is ... nothing

Categories: memorial, bereavement, narrative, representation, grief, image,
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Telling grief I

Author: joe

Tuesday, 27 March, 2012 - 15:04

From a train

My supervisors asked me a question I had been absent-mindedly anticipating - was there a reason or reference in my personal background for choosing to look specifically at bereavement in my doctoral research into cyberspace, rather than other experiences of mental distress or physical illness? My anticipation had been only brief, not a worry, but rather a cynical lookahead to the predictability of this question and the trivial dismissal I would be able to respond to it with. Perhaps I was not that off-hand about it, but I certain didn't expect the question to linger as an issue after it had been dispensed with.

When the conversation did come around I was surprised by my answer and the way I worded it. Roughly, I remember saying that I had had an experience of loss and bereavement which meant that I felt a sort of insider knowledge about it - I'd be a native rather than an interloper in the world of grief. My father had died several years ago, I said, and understood some of the reasons why people might need to use 'outlets' that were not available in 'the real world' grieving is something that people are supposed to do in moderation, and in private; it doesn't belong in social environments or workplaces, and bringing it into those worlds makes people feel very uncomfortable, unable to handle you, even annoyed that you've disrupted their normality by bringing death and the pain it has caused you into a sphere where its vocabulary and shifted emphases are alien. You find out who your friends are, who is willing to tolerate and even welcome your bereft one-dimensionality, your inability to put the events of the everyday into any kind of perspective, and who also is not able to cope with the reminder of anguish and finitude that your very existence provides. I could very well see why, when expressions of grief are so excluded from the vernacular worlds we usually inhabit, that mourners might find themselves using the Internet to speak to the immensity of the invisible world, the big other, the amorphous, unindividuated audience of the universal 'you' that listens at the end of the modem, to push out the sounds and shapes of words and images that always fail to capture the extent of the loss. "And did you use any online spaces yourself when you were bereaved?" was the innocent question. And my answer, from which I reeled for some time, came back: "No. I didn't use the Internet to express any aspects of my grief. I felt it would somehow be a diminution of my father. I guess I think that using online spaces is a last resort - something that people do when they have no other support - a poor substitute."

I spent a long time trying to work out exactly what I meant when I said that. My supervisors, both trained clinical psychologists, exchanged glances. I thought, "what did I just say?" The conversation moved on. A thought drifted around - I should clarify that comment, it sounds as though I think that people who look for online support during bereavement are losers, and that I'm not that much of a loser. "That's definitely not what I mean!" Certainly at the time I was trying very strongly to resist a certain pressure I was feel as a practitioner and maker of online artefacts - to build websites that replace functions normally carried out by humans who are physically co-present - teaching and learning, therapeutic situations, dating, collaboration, social interactions, friendship. Every time I developed a project which I felt augmented already-existing practices, I felt the purse-holders wondering if it could supercede those already-existing and expensive practices and eventually replace them with a cheaper alternative. I wanted to fight against the kind of logic that said "create online lectures, pay for fewer professors", or the dismal evidence that points at changing relationships due to the "text more, speak less" culture of the mobile phone. The digital seems to offer a postponement of emotional contact, giving the illusion of control over interpersonal relationships, but actually only facilitating narcissism - the use of others as resources which can be switched on and off at will (Turkle, 2010). This is real tension in the use of technology to mediate our emotional lives - the space for affective experiences that it creates, but also the buffering against or even disconnection from difficult emotional feelings that it tempts us with. But that doesn't get to the kernel of the "tell" I had spoken: why would a use of the web to articulate my grief be somehow a disservice to my father and to the depth of my feeling, or a diminishment of him, his life and the still living memory of him among his loved ones, his mourners?


Categories: phd, bereavement, grief, mourning, emotion, digital, Sherry Turkle,
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The Internet as a public arena for research: how do we balance the pursuit of knowledge with care for those we want to know?

Author: joe

Wednesday, 12 January, 2011 - 14:13

Today I presented a brief paper to Bournemouth University's Postgraduate Research Conference. Not trusting myself to say off-the-cuff what I wanted to say inside the 12 minute allocation, I read this pre-written piece. I have obfuscated the sources I critique, for reasons which will become clear.

My presentation is about the ethics of Internet research, especially with regard to vulnerable people, and the problems that arise from the models we use to conceptualise the environment in which we carry out our work.

It seems easy to grant that aside from some edge considerations, there is a sort of equivalence between face-to-face and online interactions, between physical and virtual spaces - particularly in academia, where our textual outputs are intended to be sufficient for the advancement of our work. The trade-offs seem to be marginal: some loss of informal face-to-face contact is off-set by the advantages of efficiency, speed, cost-saving, and maybe even innovation.

Indeed, the fact that we successfully import metaphors from the real world into the online world is what enables many different walks of life to achieve in digital environments what they would also normally manage in the real world. These are metaphors that aren't necessary properties of the web, but that we use to make it manageable: models from the material world such as pages and buttons, activities like surfing and networking, and concepts like sites and spaces. We call it cyberspace, and it can feel very like the other spaces we inhabit with our bodies.

I want to suggest that the easy equivalence we make between online and offline, and physical and virtual space, is much more problematic. This issue has arisen for me through considering some of the ethical problems that arise from using the ever-expanding wealth of raw material on the web as evidence in research.

I'm interested in how people use the online world when they are bereaved. As time goes by, more of us are exposed to death on the web - what to do with the Twitter accounts and Facebook profiles of loved ones who have died, online commemorative websites, and so on. How do people who are mourning loved ones use online spaces to express their grief, or seek out support from others? Photo-sharing sites have groups dedicated to expressing grief through images; fashion sites find themselves hosting users who repurpose the site tools to discuss their loss; and forums dedicated to supporting bereavement through both informal support and professionalised services proliferate.

These phenomena raise questions about how seeking out online support might be helpful, perhaps through the chance to memorialise loved ones, or perhaps because sometimes the ambiguity of anonymous strangers on the web makes disclosure easier. Mourning is often a difficult subject to deal with in day-to-day life - we expect the grief-stricken to absent themselves from the office or social occasions until they are competent to cope with them. Unwelcome expressions of grief can be embarrassing or even seen as pathological. Do these questions of etiquette and emotion prevail online much as they do offline? Do online spaces provide therapeutic opportunities which might be more scarce in the fleshy world? Does the availability and peculiar permanence of online talk make mourning problematic - perhaps by extending the grieving period, or by exposing people to the trolls?

My research therefore is partly an investigation into the differences and similarities between virtual and real spaces. There are many comparable studies which ask this question through the lens of some specific issue, and there are guidelines as to how to deal with the ethics of this kind of research. After some reflection on some of those other studies, I have taken a somewhat hardline approach, and placed rather more burdensome ethical constraints on my research project than I might otherwise have done.

To explain these constraints, I'm going to mention a study from 2009 of an online space which is dedicated to the subject of gynecomastia - or the 'moob-job'. Men who are considering the procedure, undergoing it, or who are post-operative, regularly contribute to the site, which was studied by a group of psychologists in 2007, using interpretive phenomenological analysis to understand the experiences of these men. I wish to show that the ethical approaches and arguments they used, quite legitimately, are flawed in ways that force me to rethink the priorities at work in this sort of academic exercise. Perhaps even more than the bereaved, men with concerns about body image are a group who should not lightly be objectified by an academic project.

The authors cite the guidelines drawn up by the British Psychological Society for conducting research online. One might summarise them by saying that participants in Internet Mediated Research (IMR)

"can be identifiable or anonymous; they can explicitly consent to participate, or they can be invisibly observed without their knowledge."

The guidelines go on to state that strong justifications should be provided for covert non-participant observation - what we might in this context call "lurking" - and that consent should be sought unless the environment is such that "people would 'reasonably expect to be observed by strangers'."

Exactly what criteria qualify public spaces as those in which people would reasonably expect to be observed is not specified in the BPS guidelines, but left to be established in the body of work which grows around the discipline.

The authors of the gynecomastia support group study note that it is the contributors' expectation of their messages being visible to other anonymous users of the web which brings their content into the public domain. Content accessible without registration or password barriers effectively passes into public ownership. They also cite an earlier paper reporting about a website supporting anorexia nervosa which argued that study of content in the public domain is akin to "naturalistic observation in a public space" and that the openness of the web therefore "does not raise concerns of invading privacy."

The gynecomastia study also notes the possible disruption that disclosing the investigators' presence might cause to the integrity of the environment that they are studying. It is evident that they are trying to ensure that their work is ethically sound and demonstrates a care towards their subjects, and I don't wish to imply otherwise. But I do want to suggest that this implementation of research guidelines is flawed because it wants to accept certain equivalences between the open internet and public space (such as a supposed ability to undertake naturalistic observation without disturbing the phenomenon being observed), but ignore non-equivalences (such as the fact that covert observation of such intimate communications is ordinarily impossible in public spaces, not least because open discussion of sensitive topics is very rare).

The study in question makes further trouble for itself where it creditably seeks to anonymise sources. Obfuscating quotes is generally thought to be a sound tactic in protecting the individuals who may have made their own efforts to conceal their 'real-world' identity in their online profiles, but may have done so inexpertly. They may, for example, have chosen an obscure 'handle' or login-name, but have nevertheless signed off posts with their actual forenames. To avoid these individuals being found via search engines, the authors state that they performed identifiability testing by searching for direct quotes from individual posts were in Google, which did not retrieve the site in question or the messages that had been appropriated.

This test sadly demonstrates a poor understanding of the operation of Google's index: that it does not find sources at any given moment does not preclude the index being updated to include them at a subsequent date. Indeed when I searched Google for the quotations presented in the article, direct links to the original sources were listed. Again, this error does not show unethical behaviour: merely that an ethical guideline has been followed in letter but not necessarily understood in practice.

These critiques of the ethical approach take just some of the more obvious problems with abstract guidelines as they are implemented; and doesn't even start to address other problems with lurking and appropriation, such as the hit counts, visible to site-admins, that researchers contribute to sites; or the eye-balls they bring which may in some cases contribute to advertising revenue; or the general tacit deceptions they must engage in simply to carry out observation.

I want to suggest that importing the metaphor of "public space" into an intimate online discussion is problematic because it buys the researcher the ethical justification they require, but largely ignores the epistemological and ethical non-equivalences. I'd argue that people simply don't go online and talk to each other as though their words are being recorded and broadcast, and the permanent visibility of online discourse is a side-effect, rather than a primary concern, when it comes to a user's motivation to participate in online discussions or contribute their creative work to a community. I'd prefer to argue that the actual space that the user occupies when contributing to an online forum plays a much more crucial role in determining the level of disclosure they are willing to engage in, not to mention the level of trust and intimacy that the visible community creates. This may often actually be the workplace, or bedroom, rather than a public space.

Even where forum users are in public spaces, there may be a huge mismatch between what they will willingly write in the context of a post from a mobile phone, and what they will say to the person sitting next to them. To discard these sorts of considerations is, I would argue, to make epistemological errors, as well as ethical mistakes, and ultimately is a consequence of prioritising the academic generation of knowledge over the well-being of subjects.

The consequence of these concerns for me is to adopt an alternative approach, which does not solve the problems raised, but swaps one set of challenges which I find ethically unjustifiable for another set which I am more willing to defend. So I will be making full disclosure in any online spaces I enter before I undertake any observation; I will not be using material without the full informed consent of the original contributor; and in the event that any community feels my presence as a researcher to be intrusive enough to ask me to leave, I will promise to do so. This strategy at least offers the hope that the research process will be a consensual collaboration with participants, rather than a deceptive objectification of them: when dealing with communities of people we might class as vulnerable, this must surely be the preferable option.

So the project is now such that it makes no claim to be objective in a positivist sense, but rather is a fully-blown form of participative and ethnographic phenomenology. This brings another set of epistemological challenges and ethical quandaries, but I'd also suggest that Internet research which does choose to use covert observation may need to find alternative justifications.


Categories: research, paper, grief, bereavement, academia, knowledge, epistemology, ethics, online, internet,
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