Working with the people whose lives you research

Making co-production a reality: ExpertAge

 

peer facilitators

Two of Age NI’s peer facilitators

by Annie Melaugh McAteer and Marian Cinnamond

Background

In recent years there has been a strong emphasis on ‘service user involvement’ and co-production in research. There are many possible benefits: better quality research, innovation and broad dissemination channels to name a few. Having experience of co-production, through working with volunteer peer facilitators, I have experienced these benefits. In addition, the approach has helped me grow as a researcher and changed my approach to identifying questions and interpreting findings through the inclusion of older people in the research.

At Age NI we strive to put older people at the heart of everything we do, and as a result, we feel our approach to research should be no different. Different levels of co-production exist and we have found that involvement of older people, from conceptualisation to dissemination, is key in producing high quality, informed work.

This article outlines a model of co-production that we know works well for us (and of which we are very proud). We use this model to help shape and develop services and policy and it ensures the views of older people are heard. As a researcher I get a lot out of this approach, not least the opportunity to find out what really matters to older people.  Our peer facilitators also get a lot out of this experience,

‘As a peer facilitator I had the privilege of people telling me about experiences that had sometimes been very difficult for them and may have had a negative impact on their confidence and self esteem. I had known some people I interviewed for a long time and others not at all, but I was given insight into their lives which I would not have otherwise have had. This was an enriching and humbling experience for me. (peer facilitator feedback)

 

Older people are experts by experience

We are all getting older. Individually of course, but also as a population.1 And I think we should celebrate this and all doors it opens to new opportunities in later life. An important part of this is that people are given the opportunity to age well and enjoy later life. Older people face a range of barriers which can impact on ageing well including access to quality health and social care, access to information about the help they are entitled to, ageist attitudes and discrimination. It is these areas we most want to understand through our research. More recently we have been working to understand what makes a ‘good life’ for older people and how they understand the term ‘frailty’. Older people are their own experts, with lived experiences of what works and what does not and, as all researchers know, experts are the best place to start.

 

ExpertAge

The older people involved in developing our research are enthusiastic and dedicated volunteers. Their passion and insight helps us ensure our research is accurate and reflective of older people in Northern Ireland.

Co-production takes place through our ExpertAge team; a group of peer facilitators, supported by an Engagement Manager, who support our research in various ways. Those involved receive bespoke training around facilitation and data collection. The model is based on the understanding that people are more comfortable talking to peers than to professionals,

‘Many of us have a tendency to feel less judged or dismissed by people to whom we feel similar, or perhaps be better understood.’ (Feedback from peer facilitation)

Peer facilitators provide feedback on research approaches in terms of understanding and relevance. This helps us ensure we are getting to the core of the issue and doing it in a way that is accessible for older people. They provide insight into developing research within an ethical framework – for example, will asking this question cause distress, and if so, is it necessary or what would mitigate distress? They help us recruit participants, ensuring older people from a range of backgrounds are included, especially those who might belong to lesser heard groups; those who are isolated for example.

One of the most valuable aspects of peer facilitator involvement is their role in data collection. They support older people to complete questionnaires, and carry out one-to-one interviews. These peer to peer conversations allow for a more in-depth exploration of the areas being addressed, and our peer facilitators are able to take the time to spend with people, to do this at their own pace,

‘the interview was quite long, so we stopped for tea and cake in the middle, to give the person a rest’ (peer facilitator feedback)

We know that older people want to be heard, and that being listened to is an essential part of feeling involved and valued. Using co-production and supporting co-researchers, allows us to do this in a meaningful way.

Finally, our peer facilitators support dissemination of results. They provide feedback from their perspective about the data collection, they provide input into preliminary discussions around results and they participate as co-presenters in events to launch findings. Marian, a peer facilitator, co-wrote this post with me.

For me, co-production starts before the project and continues on afterwards. Co-researchers are part of the research team and the project benefits from their inclusion.  As a researcher I should support them, ensure they receive adequate training, brief and debrief them and build relationships. This all takes time, but in seeing the quality of the work delivered, I know it is worth it. And it isn’t just my view; over the last year we have worked with a local council and Public Health Agency using this model. To end, I would encourage others to adopt such an approach and put those impacted by research at its heart.

https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationestimates/articles/overviewoftheukpopulation/july2017

2 For an example of work the peer facilitators have been involved in see here

About Annie, Marian and Age NI:

Annie has a psychology background, graduating from her PhD at Queen’s University, Belfast in 2017. She currently works in the voluntary sector in Northern Ireland as Impact and Evaluation Manager at Age NI. Her research interests are in wellbeing, understanding the needs of older people and service evaluation. She is an advocate of co-production and includes older people in the development of her current work.

Marian Cinnamond: Marian is an Age NI peer facilitator and has been involved in several projects, supporting older people in Northern Ireland to share their views.

Age NI’s vision is a world where everyone can love later life. We provide a range of services to help support older people across Northern Ireland; Advice and Advocacy service provides support and information for older people; Wellbeing Services seek to improve the lives of older people, empowering them to live the lives they want and our Care Services provide care for those who need it. Our policy and influencing activities ensure that policy decisions made today support more older people in Northern Ireland to love later life. We also support sub regional older people’s networks and offer a wide range of volunteer roles. To find out more about Age NI you can see our website: http://www.ageuk.org.uk/northern-ireland

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Tackling the ethical approval process

Forms over function: Ethics, ethnography and the NHS

by Carol Robinson

At times last year I forgot that I was doing a PhD. It’s not that I was having a wild time as a student. No, by 9am every day I turned up to the office my department has kindly provided, settled down at my desk and worked solidly until some point after 5pm. Some of that time I’d be keeping on top of email, or attending departmental meetings, but mostly, I was working. Twitter doesn’t distract me, I had an organised weekly list of things to do that I worked through, and things were progressing nicely, thank you.

So why did I forget that I was working towards a PhD? Because for most of that time everything I did was aimed at getting ethical approval for my research. So it was almost a shock to look up and remember that wasn’t really my goal. My goal is to do the PhD research, to contribute to human knowledge and understanding, and to do it in a way that improves people’s lives. For a while however, compiling what became 91 pages of ethics forms plus supporting documents and all the bureaucracy that goes with that completely eclipsed the research.

I always knew I’d need to get ethical approval for my work. What I didn’t appreciate was how time-consuming, frustrating and complicated this would be. I used to listen to other people’s stories of wrestling with UK’s Integrated Research Application System, or with the NHS Health Research Authority’s byzantine processes and think either that they were exaggerating for effect or that perhaps their project wasn’t, well, good enough. I’d had approval from the prison service for England and Wales for two previous research projects; how hard could it be? I now apologise whole-heartedly that these thoughts even crossed my mind.

I did make life harder for myself by wanting to research dying prisoners, thus requiring both health service and prison service approval, as well as that of my University. The prison service process was fairly straightforward and familiar. The real trouble was with the NHS processes, and with the relationship between the three bodies. What kept me going for several weeks, as I tried to untangle the mass of acronyms and synonyms involved, was the thought that I was gaining useful experience. At the end of all this, I thought, I’ll be able to put on my CV that I understand the process, know how to fill in the form and could liaise with a health Research Ethics Committee. Not true. The process is so capricious that all such an entry in my CV would prove is that I once had the mental fortitude to see an application through to its conclusion.

Although my colleagues will tell you I sighed out loud quite a bit, I did make it through the time when an overnight update to the IRAS website hived my answers off into two separate forms, one of which I couldn’t see. I didn’t scream when I discovered just before submission that this should be changed back to one form. I stayed cheerful as my participant information sheet, carefully written to suit people not that keen on reading, expanded to yet another page with all the extra information I was asked to include. I only muttered a modest amount when asked to add the (to the participants) totally meaningless IRAS reference number to it. I maintained my outward equilibrium whilst I confirmed I would not be doing things I’d never thought of (wearing clerical dress was my favourite such request, closely followed by audio-recording outside of interviews). But I confess my heart did sink when someone I was relying on to understand what should happen next said this would be a learning process for them too.

Being a reasonable person, I did appreciate that part of the difficulty was that I was having to fit getting approval for sociological research into a process intended for clinical trials. The mismatch only seems to be partly recognised by the bodies responsible. So, whilst there’s a protocol template to complete aimed at qualitative research, I still had to say I wasn’t using ionising radiation or using human tissue samples. And whilst there are ways to amend the project once it’s been approved, there’s no appreciation that good sociological research is often iterative. Instead, there’s the assumption that you will know all possible scenarios in advance. With this comes an assumed relationship to the research participants; they are to be the subjects, not the co-creators of research knowledge. There is no scope for an understanding of ethical research that deviates from a generic (clinical) ideal, and consequently, the best of a discipline’s specific characteristics and of its newer research methodologies can be lost. I say newer, but in practice even my well established chosen ethnographic methodologies sit uncomfortably with the process of getting ethical approval from a health research authority.

There was a tendency in the guidelines provided to use language in unexpected ways. Have you ever had that experience of all the words making sense individually, but being incomprehensible when put together? I found myself trying to draft emails to effectively ask “so if ‘host organisation’ doesn’t mean ‘the organisation hosting the research’, what does it mean?” I struggled, along with my supervisors, and it turned out, the ethics committee staff, to understand what the REC had wanted when it asked whether I had an ‘honorary contract’. Later on, the REC asked if the scientific validity of the study has been confirmed independently of the academic supervisors, giving as an example of how this might be achieved “a University PhD review process”. None of us, not my academic supervisors, not the university ‘sponsor’ that I’d discovered along the way was also needed, knew what this meant. We were stumped, and resorted to gently approaching a professor elsewhere to see if they could provide such an independent scientific review, and quickly. In the end, this was not needed –all that was meant was would the University’s ethics committee be looking at it. Yes, of course.

There were funny moments too. Having had my application reviewed by a Research Ethics Committee that met in Essex, I then discovered how similarly I pronounce ‘Ethics’ and ‘Essex’, on the phone, to a poor, kindly person trying to understand which ethics committee had looked at it. Eventually, I said, “the one that met in Chelmsford” and we moved on. Having three ethics committees look at your work is not fun. As things are, it’s inevitable for research such as this, but unsurprisingly their expectations are not always compatible. The prison service doesn’t want any contact details for external people, such as academic supervisors, included on Participant Information Sheets; the NHS expects this. The University wants email addresses only; prisoners don’t have email. The NHS REC regarded the notices that prison governors would issue to let prisoners and staff know about the research as ‘posters’ that the REC should scrutinise, so needed the final text agreeing before I could get their approval – 6 months in advance of the governor issuing the text. Prison governors are incredibly busy people, so I am indebted to them for having calmly accepted this.

There is, outwardly, plenty of advice available on NHS websites. Much of it is out of date, hard to find, or impossible to understand. There are flow charts describing a parallel world, ‘start here’ guides buried beyond discovery, and directories that are out of date. Lovely, kind and supportive staff within the NHS R&D offices or working with RECs do their best, but if your project is unusual, there are things they can’t be expected to know, such as that there’s a limited number of Health RECs who will look at prison applications, until it’s nearly too late.

I’m not alone in this. In my struggle to understand the process, I came across numerous articles by academics similarly venting their frustrations, including one that fairly calmly reflecting on the problems, before revealing that their own project had spent the entire initial research budget trying to get permissions for research. Wiser people before me have also found that processes designed for quantitative-based medical interventions and clinical trials cannot adjust to the needs of qualitative research. And yet not much seems to have changed. My gripes may seem small, but behind them is a bigger issue, that of the imbalance of power between researchers and research ethics committees and the lack of accountability of the people, some experts, some lay people, appointed to make such important decisions.

So now I have all the ethical approvals I need, 10 months after I first starting filling in the forms, I’m remembering fondly why I’m here. It comes in flashes; the possibility of time to open that new book I’ve been eyeing up, something on the news that reminds me of the relevance of my research interests, a chance conversation with a colleague. Best of all was a recent conversation with a senior manager at one of the prisons I’ll be visiting for fieldwork. We’d not spoken before, but within minutes she’d reminded me why I’m doing this, why it matters that I’ve survived through all these hurdles. Out there are people who are doing their best in tough circumstances, and good quality research may just be able to help them. I’m looking forward to getting on with it.

Not anonymous enough? Research data and issues of anonymity.

by Carol Robinson, doctoral researcher, University of York.

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Recently, I settled down to enjoy an article by one of my favourite academic writers. It was everything I’d hoped it would be: well written, thought provoking and interesting. It took a new approach to its subject and had a campaigning edge that I sympathised with.  And then, towards the end of it, I realised that I knew one of the people who had participated in the study being reported. Not that I knew them in terms of recognising a type, but that I actually knew them. My first response was one of disappointment. I want my academic heroes to be flawless. My next thought was along the lines of ‘will anyone else know them?’ followed quickly by the question ‘does it matter?’

A quick search on-line resulted in a Wikipedia page that confirmed other people would be able to identify the participant if they wished. The academic had not revealed their interviewee’s age or location, but from the context it was clear that they were referring to a member of a small group and once more specific information was given, anyone with a curious mind and an internet connection could produce a name. From my knowledge of the individual, further details in the article then confirmed what I had found.  Anyone else would be able to identify them, even if they lacked my certainty.

So, does it matter? The article probably won’t be widely read, even in academia, and it’s therefore doubtful that anyone else will do the searching to put a name to this participant. It’s possible the participant wouldn’t mind if they were named, although the author gave no indication that they’d consented to this. The encounter that was described didn’t include anything particularly controversial or personally revealing. If they read it, the person might not like some of the ways they were portrayed but there was no obvious information that could be used against them. But shouldn’t the participant have been assured of anonymity regardless?

Anonymity is one of the things I have to think about in my own research, which is around deaths in prison, two subjects with particular sensitivities. It is one of the hallmarks of ethical conduct, together with confidentiality and informed consent, necessary not least because twentieth century history has too many examples of exploitation and damage occurring in the name of ‘research’. Anonymization arguably has a value in its own right.  Attempting anonymization, even if we secretly admit we may fail, is a way of preserving the idea of academic integrity, of seeking to avoid the exploitation of other people’s generosity that would taint our work. It is evidence of academic vigour. This links back to my initial disappointment that an experienced academic had made a mistake. If the anonymization was ineffectual, were there other aspects of this article that were in some way dubious?

Demonstrating that we have followed the conventions of academic research, whether by correctly referencing our sources or by using recognised methodologies, is part of staking our claim to be academics. It shows a respect for the traditions of our particular discipline, and in the case of techniques such as anonymization, establishes our research as ethically valid. And if ethical validity is lost, it is arguable that other forms of credibility are lost too.

Research ethics committees usually insist on anonymity and confidentiality for people participating in any research, especially vulnerable participants, as a way of protecting them. It is assumed that some harm or loss may befall an individual if their identity is known, if the stories and experiences they share and which become the researcher’s data are in some way linked backed to them as a person living in the real world, beyond the study report or academic article. Sometimes, as in my own research, this is associated with taboo subjects or criminal activity, where there may be very real consequences if anonymity is not maintained.

In seeking ethical approval for research involving prisoners, deemed to be vulnerable because of their incarcerated status, I am encouraged to think through how I will record and store my data in a way that protects their identity. The specific threat is rarely stated. Although it may be poor practice, is failing to anonymise a person really putting them at risk of harm? In many cases, there is perhaps no direct link between a possible failure to anonymise effectively and a harmful consequence for the participant; the information revealed has to have the potential to be used in a way that would confer harm. However, there is often a simple presumption that all people participating in research should be protected, which ignores the question of whether harm is likely to follow from identification.

In all aspects of our lives, most of us share personal information continually.  We willingly offer up personal information all the time, giving our names, addresses and even bank account details to near strangers, trusting without evidence that they will be used for the purpose we intend. We share our views in conversations that can be overhead by others and via on-line discussions with unknown interlocutors. We post pictures on social media, link them to others without their consent, and live surrounded by cameras. Why do we persist in thinking we can anonymise research participants?

Researchers may use pseudonyms, but often a participant’s gender, age, nationality, race or class are pertinent to the research and so cannot be hidden. We can limit access to some findings, but that poses its own ethical dilemmas. And when the research needs to focus on participants from a small group, as in the case of the article I was reading, anonymization becomes so much harder to achieve.

I have experienced this in my own research. Last year, I interviewed uniformed prison staff with experience of working with terminally ill prisoners, in a prison where there were few female officers. The interviews gave really useful insights into the work prison officers perform with dying prisoners but I was painfully aware that the female interviewees may be identifiable by other staff in the prison, despite my best efforts at anonymization, simply because they belonged to such a small group. Even with a wider pool of participants, in a tight-knit world such as a prison anonymization is hard to maintain. Surely we should not abandon useful research because it involves a small group or close-knit communities?

Indeed, should we even try to anonymise our research participants? Most of the time I would say yes, but there are times when far from protecting our participants, doing so actually risks inflicting a harm.  As researchers, we promise anonymity to ethics committee on behalf of other people, who may not wish for it. Very often, participants may have offered to help the researcher because they too care about the issue that is driving the research and want to have an impact on the situation. They may want to have their voices heard, and by extension, themselves credited. When we anonymise them, we keep their voices, but hide their faces. For vulnerable participants in particular, this is potentially a misuse of power. It is a way for the researcher to exert their positional power and claim control. Nicely anonymised, our participants may not even be able to spot themselves in our final reports and presentations. They can’t see how they are represented, and so they can’t hold us to account. There are ways round this, involving them in the production of the final report, but in my discipline at least, few researchers seem to opt for these approaches.

Lastly, I found myself thinking ‘what does one do if one spots that an academic has not sufficiently anonymised their data?’. It is not easy to be certain what responsibility we have when we spot something problematic with someone else’s work. In the case of the article I read, the peer reviewers had been content with the text, the editorial board satisfied and the article is now published. The damage, if there were any, is done and in an age of on-line journal access, probably un-doable.

I asked colleagues, and was struck by two responses in particular, widely divergent but both from science faculties. One, coming from a discipline where the professional accountability of practitioners is paramount, felt strongly that I should contact either the author directly to alert them to the problem, or the journal anonymously to suggest they review their procedures. From another department, a colleague suggested I keep quiet, and not draw attention to the problem or myself. For them, raising the matter with the author would only make things worse. Each response of course reflected the culture and values of the particular academic disciple. In some academic disciplines, where the use of human participants is rare, the question of the quality of participant anonymization may rarely come up. But for many disciplines, including my own, where the involvement of human participants is so often essential to a research project, this is an issue that can occur at any time. Do we as academics have a collective responsibility to revisit anonymization?

 

Emotion Rules in Feminist Book Reviews: An Inroad to Improving Feminist Relationships

By: Lisa Kalayji

WAB 2Swimming through the endless tidal wave of demoralising political think pieces and scholarly jibber-jabber in my mostly academic Twitter feed, I came upon an account called ‘ShitMyReviewersSay’, which features the cruelly scathing comments that anonymous peer reviewers write about the hopefully-to-be-published academic journal articles of their colleagues. The account’s handle? @YourPaperSucks.

Its purpose, other than to give us an opportunity to chuckle at what, under different circumstances, makes us want to either cry or set a university building ablaze, is to highlight the absurd magnitude of the viciousness that peer reviewers will direct at their colleagues when given a chance to do so anonymously.

It’s cathartic to have a laugh at this sort of thing, but when it doesn’t come in the form of a satirical Twitter account, our reaction is a lot different. ‘What the hell?!’ we wonder incredulously. ‘Couldn’t you express your criticism in a less ruthless and petty way? What good does it do you to ruin someone’s day and treat their carefully nurtured brainchild of a paper like garbage?’

ShitMyReviewersSay reminded me of the book reviews in Trouble and Strife, the radical feminist magazine I’m doing my PhD research with.

Trouble and Strife published a fair number of book reviews – feminists write a lot of books! – and over the course of my research I’ve found that there’s a vast deal we can learn about a group of people, be they academics, radical feminists, or any other group, from the way they review each other’s writing.

My research is about emotion culture: the system of rules and social norms that prevail in a society or social group which affect how people feel emotionally and how they express those emotions. Book reviews contain a treasure trove of clues about the emotion culture of the social group that the reviews come from, but in order to see those clues, you need to know some of the things sociologists have learned over the last few decades about how emotions work.

Emotions are relational

As the term ‘relational’ suggests, emotions come up in relationships between people. Because psychology dominates the popular lexicon we use to talk about and make sense of emotions, we tend to think of emotions as states which exist inside of us, are linked to our neurochemistry and our personal histories, and are mostly governed by things like innate human needs for social bonding. All of those things are partially true, but what the sociological study of emotions has revealed is that emotions are actually relational.

Why we feel the way we do in any given situation is constituted by our relationships to the people and things around us and what we understand those things to be and mean.

There isn’t anything in our genetic code that makes us get annoyed when a friend we’re supposed to meet for lunch shows up half an hour late (though our biology is necessary for us to be able to experience feelings), and the feeling of annoyance isn’t something inside of us that emanates outward through the things we say or do (though we do express emotions in that way). We’re annoyed at someone (that’s the relation), and the reason for that annoyance is what we think the lateness signifies. We’re busy people! Don’t they think we have better things to do than sit around waiting? We have to be back at work soon – now we’re going to have to rush through lunch! Our awareness that our friend knows that it’s considered rude to keep someone waiting and that it’s an inconvenience to us is what makes us annoyed – their indifference to our needs and to the agreed conventions of how keeping a lunch date with someone works creates our feeling. Likewise, though, if we found out that they’d been delayed because a stranger attacked them on the street and nearly broke their jaw, our annoyance would quickly give way to concern – what their lateness showed about our relationship to them would have changed, and with it, our feelings about it.

Emotions are subject to rules

Much like there are social rules about how we’re supposed to behave in different sorts of situations, there are also rules about how we’re supposed to feel and how we’re supposed to express feelings. If an adult is audibly crying at, say, a fancy restaurant or a business meeting, that would seem inappropriate, and probably make everyone around them quite uncomfortable. If they were at a funeral, however, that would be considered normal and appropriate, and no one would be bothered.

Even if feelings aren’t expressed, there are rules about how we’re supposed to feel.

If, for example, you’re a bit off your game at work because your sister died last week and you’re in grief, and while not actually admonishing you for it, you get the sense that your boss is annoyed with you for not being your sharpest self right now, you might get upset or angry at them. When someone is in grief, we expect others to respond with compassion, even if that grief peripherally causes some inconvenience to others – it’s a violation of the social norms of compassion and empathy to get annoyed at someone for being grieved, even if the annoyance is mostly hidden and not openly expressed. The rules are also different depending on what the characteristics of the people involved are. If that person crying in the restaurant is an infant, while people might still not be pleased about the noise, it wouldn’t make them feel awkward and uncomfortable, because we consider it normal behaviour for babies to cry regardless of time or place.

These are all some general aspects of how emotions in social life work in ordinary social situations. What my research is about, though, is the specifically political dimension of emotions in social life.

Social norms about emotions are deeply political, even in most seemingly innocuous daily interactions like those I described above. Rules about who is allowed to feel or express what feelings towards whom divides along a lot more political lines than the differences between adults and children. Anger is generally considered more appropriate in men than in women (and in women is more likely to be characterised as histrionics or emotional instability), and vulnerability more appropriate in women than in men (with men’s abilities to be ‘proper’ men called into question if they cry, especially in public). Rules about emotions are also racialised – even very slight expressions of anger from black men are interpreted as very threatening because black men are culturally conceived of as inherently threatening, while much stronger expressions of anger from white men (or women) are regarded as less threatening and are more likely to be considered justified. Our prevailing cultural conceptions about what characteristics different kinds of people innately have give rise to specific, and often strictly socially enforced, rules about who can feel what and how their feelings can be expressed.

Emotions in feminist book reviews

Feminists do a lot of writing, and a lot about how emotions work in feminism can be learned from examining the books, magazines, pamphlets, manifestos, and websites they write. I’m researching radical feminism, a specific type of feminism (there are a lot of them) which emerged during the ‘second wave’ of the Women’s Liberation Movement in the late 1960s, and continues today. From 1983-2002, a radical feminist collective the UK published a magazine called Trouble and Strife, and a lot of radical feminist political thought from that period can be found there.

WAB 1Because feminist politics is so substantially borne out through reading and writing, one of the central strategies that feminists use to think through politics is by reading and debating one another’s writing. For that reason, unsurprisingly, Trouble and Strife published quite a few book reviews, wherein contributing authors to the magazine reviewed books authored by other feminists. By comparing these reviews, and the responses to them that readers communicated to the magazine through letters to the editors, we can see radical feminist emotional politics in action.

What I’ve found is that the emotion rules in radical feminism are different for relationships between radical feminists than they are when dealing with someone outside that political community. When dealing with fellow radical feminists, they’re more considerate of one another’s feelings, express their criticisms more hesitantly and gently, and are more appreciative of the aspects of the work that they agree with. On the rare occasion that someone breaks this rule and is harshly critical of someone within the radical feminist community, there’s a strong backlash, with others writing letters to the magazine to express strong objections to those criticisms having been published, and some questioning the political identity of the magazine as a whole in light of their decision to publish exacting reviews.

This will ring true for many feminists who currently engage in online activism, who are familiar with the more receptive audiences within their own political communities, and harsher (and sometimes outright vitriolic) criticism from feminists who have a fundamentally different set of political values.

This has profound implications for the future of feminism: if feminists who disagree on crucial political issues are more willing to upset one another, and less desirous of understanding where others are coming from, then we’re likely to see a continuation of the entrenched infighting that has plagued feminism for decades. I’m not suggesting here that we should return to the ‘happy sisterhood’ of yesteryear (which, as many feminists have pointed out, never actually existed). What I do want to highlight, though, is that if we want to understand why conflicts between feminists get so heated and can be so divisive, understanding the emotion rules which give shape to feminists’ relationships with each other is a crucial piece of the puzzle.

Once we become more aware of these rules and how our own feelings are shaped by them, we can act to change them, and while this won’t solve all of feminism’s problems, it can go a long way toward generating more fruitful dialogues between feminists who belong to different political communities.

This strategy can be extended to other social movements as well, and it has rarely been a matter of more urgency than it is right now for social movements to be able to prevent the breakdown of their political projects due to irreconcilable conflicts from within their communities. During the currently ongoing period of rapid and disorientating social and political change, understanding the emotion rules of social movements can help us to ensure that efforts to enact positive social change are successful, and examining the way we speak to, speak of, and write about one another is one tool we can use for making sense of our emotion cultures.

You can find all issues of Trouble and Strife on their website at troubleandstrife.org.

Researching through Recovery: Embarking on a PhD post-brain surgery

By Sinead Matson, B.A., H.Dip. Montessori, M.Ed.

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Anyone who has had the misfortune to undergo a craniotomy should do a PhD. Seriously. It makes sense. Both paths have similar hurdles: Imposter syndrome – check! Struggle with writing – check! Trouble expressing your thoughts – check! Extreme tiredness – check, check! It’s physiotherapy, but for your brain.

I joke of course, because each person’s individual recovery is different, but doing a PhD has personally given me the space to recover from a craniotomy while still actively working on my career and passion. I was always going to embark on a doctoral degree but in October 2014 (ten weeks after my second child was born) I had four successive tonic-clonic seizures which ultimately led to the discovery and removal of a large meningioma (brain tumour) four days later. When I woke up from surgery I couldn’t move the right-hand side of my body except for raising my arm slightly; my speech and thought process was affected too. Of course, I panicked, but the physiotherapist was on hand to tell me that while the brain had forgotten how to talk to the muscle – the muscle never forgets. I instantly relaxed, “muscle memory! I’ve got this” I thought to myself – forever the Montessori teacher.

Nobody tells you that recovering from brain surgery is exhausting, so exhausting. Every day I had to relearn things I had previously known. Every single sense is heightened and a ten-minute walk around the supermarket is a sensory overload. However, I never questioned the fact that I would start college the following September; in fact, it drove me to do my physio and get physically better. I even applied for a competitive scholarship and won it. I can never explain enough how much of a boost that was to my self-esteem. There is nothing like brain surgery to make you question your identity and your cognitive skills in a profession that values thinking, research, articulating new ideas, and writing. It is like an attack on your very being.

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When I started, I could not have been more accommodated by the Education department in Maynooth University, but in a manner which was subtle and encouraging whilst still pushing me to do a little bit more. My supervisor struck a delicate balance between supportive and always encouraging me to look a little further and read more. I never felt mollycoddled or out of my depth (well… no more than the average PhD student).

Of course, there are challenges. Aren’t there always? It can be frustrating (not to mention embarrassing) when you cannot process a conversation as quickly as it is happening at meetings, conferences, or seminars; it’s the same for when you answer a question but know the words you are saying are not matching what you are trying to articulate. Submitting a piece of writing to anyone, anywhere, is the most vulnerable thing that you can experience, especially when your language centre has been affected and you know your grammar and phrasing might not always be up to par. Transitions flummox me, particularly verbal transitions like the start of a presentation, introducing and thanking a guest speaker, taking on the position of chairing a symposium, and day to day greetings. I lose all words, forget etiquette, and generally stammer. I forever find myself answering questions or reliving scenarios from the day in the shower!

So, what’s different between mine and any other doctoral student’s experience you ask? Well, I’m not sure. I see my fellow students all have the same worries and vulnerabilities. We all have discussed our feelings of imposter syndrome at various points thus far, our excitement and disbelief when our work is accepted for presentation or publication, and our utter distress at not being able to articulate what we really wanted to say in front of a visiting professor. I do know this: it used to be easier; I used to do it better; I never had problems with writing or verbal transitions before; it is harder for me now. But (BUT) I now have a whole team of people who share my feelings and frustrations. I now have a community who champion my successes and comfort me with their own tales when I have bad days. I now feel less isolated and more normal. They allow me…no…they push me to do more, to believe I could travel to India alone to research; to not let epilepsy or fear to hold me back; to believe that I could negotiate the research process on the ground with preschool children and their parents and not get overwhelmed. They have read papers and assignments for me before I submit them and they expect the same of me. They simultaneously allow me room to vent (and take the lift when I’m too tired to walk) and they push me to be more adventurous with my reading and theory – to take risks I may never have taken.

All-in-all, I cannot think of a better way to recover from brain surgery and all it entails than the absolute privilege of completing a PhD. It gives me a space – a safe space – to recover in. The research process itself has helped me learn who I am again, what I stand for, and what I believe. It has pushed me so far outside of my comfort zone in a way that I’m not sure I would have done otherwise but I am positive is vital to my full recovery. It has exercised my own personal cognitive abilities, reasoning skills, verbal and written expression so much more than any therapy could have, and it has given me, not a cheerleading team, but a community of researchers who are on the same journey – in a way.

I’m not saying it’s for everyone – no two recoveries are the same. However, I wish there was (and I did search for) someone who could have told me before the surgery, but particularly while I was in recovery, that life doesn’t have to stop. That it is not only possible to research while in recovery from brain surgery, but that it can also have a transformative effect on your life and your sense of identity; that it will push you outside of every comfort zone you’ve ever had, and it will be exhilarating.

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This IS ‘proper’ research: Taking on the social science vs. science debate

By: Rosie Smith 

“So why is your research necessary?”

“How do you get funding for research like this?”

These are just two of the many questions that I was asked recently whilst taking part in a competition for PhD researchers at my university. The competition was interdisciplinary and was aimed at showcasing doctoral research at the institution, whilst also providing early career researchers, like myself, a gateway into public engagement. Needless to say the competition was one of the many uncomfortable things I intend to do this year as part of my resolution to be a ‘yes’ woman and challenge myself more.

Finalists were made up of three researchers per faculty (social science, science, arts and humanities), and as a criminologist I quickly found myself gravitating towards the social sciences camp. It was a full day event in which we were judged on a multitude of criteria ranging from originality, impact, accessibility, interdisciplinary scope, and importance. I use the word ‘importance’ hesitantly, as it’s a term that causes particular anxiety when I consider my own research. My work explores the concept of ‘spectacular justice’ and the way the mass media makes the criminal justice system visible and public. I explore this concept by analysing how high profile criminal cases are represented in media archives from the 1800s to 2016.

 

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And whilst I thoroughly enjoy my research, I still often find it difficult to have confidence that my work is ‘important’, and necessary. In part this is because I am self-funding my research, and at times I find it difficult to have confidence in my work when understandings of ‘good’ research are so closely bound to notions of impact and attracting funding. But it is also in part because of situations like these, when I am forced to contemplate the debate around what constitutes ‘proper’ research.

When I was posed these questions, I admit, I was initially shocked and somewhat taken aback by the abruptness with which they were posed. But at the same time these questions draw on some of the existing anxieties I have as I begin the journey into academia. To me, these questions in some way breach the social conventions on conversation etiquette, not to mention conventions on what is and is not okay to ask a frazzled and distressed PhD student.

To the first, I was honest, and launched into the toils of juggling several part-time jobs alongside trying to develop the aura of a rounded and successful academic.

But it was the question “Why is your research necessary?” that caused me more concern. Looking around the room at the other contestants I began to question whether this question had been asked of the other finalists, in particular the natural, computer, and the physical scientists.

I was transported back to the long debates I had as an undergraduate with my ‘proper’ scientist friends. In these debates I would spend hours defending the position that social science is important and necessary, and that the two disciplines can exist in parallel.

I would passionately defend the position that the relationship between the two does not need to be one of comparison. Admittedly, my efforts to convert them were largely fruitless. And I was often left being endearingly mocked, only to be told that “but it’s not a real science though is it?” And unfortunately this is still a plight I am fighting as I embark through my PhD.

It is as if this debate is a matter of either or. You are either a social scientist or a scientist, with very little scope to dabble somewhere in the middle. This was only confirmed as the day progressed. I overheard the finalist next to me ask a gentleman, “Are you going to go to Rosie’s stand next?” To which the gentleman replied, “I don’t think so, I don’t like social science, I’m a more of a scientist”.

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Needless to say I tried my best to convince him of the merits of the dark underbelly of the social sciences, but was left wondering why I had to.

I cannot escape the importance of gender to this debate. Despite being interdisciplinary, the competition finalists were overwhelmingly female, with male colleagues only being represented by the science faculty.

Needless to say there are a large number of male social scientists who contribute greatly to the field, but historically the social sciences have been regarded as a ‘feminine’ discipline.

This is supported by statistics on the relationship between gender and higher education degree choices: in 2016, 17,075 men accepted university offers to study a social science subject in the UK, which amounts to just over half the figure for women which totalled at 30,860 (UCAS, 2016). And so I interpreted the questions “why is your research necessary?” and “how do you get funding for research like this?” not only as a judgment on the value of my research, but a value judgment more generally about the credibility of the social sciences as a predominantly female discipline. I couldn’t ignore the feeling that the feminization of the social sciences served as a double mechanism to justify the position of the sciences as superior.

At times I worry that as a social scientist, the rivalry that exists with science, whilst often only in jest or antics, has a direct impact on understandings of what constitutes ‘proper’ research.

And I question the appropriateness of using one set of criteria to judge and compare the value and ‘necessity’ of the two disciplines. In my opinion they are complimentary rather than contradictory fields. And we should be striving to broaden our understanding of what constitutes ‘proper’ research. Because although my research does not find a solution to world hunger or fight disease, it does have value- just in its own way.

At the end of the day the judges seemed to recognise some of that value too. When the scores came in, I won! It was one of the proudest moments of my Phd so far, as a social scientist, as an early career researcher, and as a woman. This experience has taught me many lessons, but the most important is to take the victories, whether big or small, when they come around. Equally I aim to worry a little less about how much impact my research has, or how much funding I attract (or not) and concentrate on enjoying my PhD and remembering that whilst not earth-shattering, my research is still necessary. All research is proper research.

 

 

 

 

“Dr. Kearney or: How I Learned to Stop Worrying and Love Impostor Syndrome”

by Eve Kearney

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I was at a family gathering recently, when as I was stuffing my face with free, home cooked food, an aunt approached me and said the words that all research students dread: “How’s being back at school going?” Apart from making it sound like I’m back wearing a uniform and taking my Junior Cert again, that question makes me stifle a sigh of despair.  I only started my PhD in English in September, and am still struggling to define what my actual research project will be on, so condensing it to a party-friendly sound bite is definitely not on my radar at the moment, nor is answering the follow up question that always comes: “And what are you going to do with that?”  In short, Aunt Jen, I don’t know how my research is going, and I sure don’t know what I’m going to do in four years with another diploma in my hand and a few more letters after my name.

The past few months have shown me that despite what I was preparing myself for, a PhD is hard.  Sure, it’s not as hard as being a real doctor and saving lives, or starting a family, or moving to a brand new country like so many of my friends are doing right now, but compared to a BA, or even a Masters, it is hard.  Gone are the days of going to class and having your ideas validated, or being graded, or even being able to discuss ideas with your friends – if I want to discuss contemporary masculinities, my fellow PhD friends will want to talk about the Victorian bestseller, or medieval syntax discrepancies.  My supervisor has been nothing but helpful and supportive, but every time I re-read an email draft, making sure it hits the right tone of humour and intelligence, I internally cringe as I hit send, fearing that I’m being too needy or bothering her with my questions – after all, I am a strong, independent, researcher who don’t need no hand-holding…right?

My whole academic career, I knew I wanted to do a PhD – I knew that coming up with original ideas and contributing to my field was for me, and even after I took a year out after my Masters, moving to Canada and starting a new life, the decision to come back to Dublin to work with some incredible people was never difficult. I have been encouraged by countless members of the department that my research ideas are good, and heck, I got As through all of my undergrad, but yet, to this day I’m still not convinced that my thesis is worth dedicating four years of my life to.  Impostor Syndrome is a very real part of academia, and a study as early as 1978 showed that it’s more likely to affect high-achieving females than any other group[1].  Even writing that last sentence made me pause: am I a high-achieving female?  Impostor Syndrome tells me that I’m not, and it tells me that I’ve only gotten this far through luck, or charm, or by fooling everyone around me. Likewise, comparing myself to everyone in the department is a trap that I often fall in to.  It seems that every day, someone is getting a grant, or having a paper published, or jetting off to an exciting conference, while I sit at my desk and try to put together an abstract so that I can keep up.  It’s a real struggle to remember that I am good at what I do, that my research matters, is original, will be a benefit to those who read it in the future.  It feels boastful to say that, but it’s the truth, and I shouldn’t be doing a PhD if I didn’t actually believe it.  I’m only in the third month of my research – papers and conferences will come, and hopefully the feeling of success will come with them.

Wait.  If a PhD is so hard and terrible, why am I even sticking with it? Why do I get out of bed every morning and put in the 9 – 5 on campus?  Because if something is hard, it’s worth doing.  And because I really do love every moment of it. Before I started in September, I pictured the next four years of my life as drinking martinis in the staff bar and using fancy words in conversations with other research students.  While it’s turned out that I’m not actually allowed in the staff bar, and I mispronounce most of the words other people around me are using, it’s turned out better than I imagined.  That feeling you get when everything you’ve been thinking about for weeks just clicks, and suddenly you’re typing a couple of thousand words of inspired greatness is unparalleled, even if it turns out that you end up deleting most of it the next day!  The community I’ve found in UCD and beyond of similarly terrified individuals has been a constant support to me – sure, we’re all quietly competing for publication and funding, but if I’m ever freaking out about something, there’s a list of people I can talk to or grab a pint with, and I know I’m on a lot of lists, too.  The challenge of self-discipline and self-motivation is something I’m finding most difficult, but again, when something goes right and everything makes sense, all the wailing and gnashing of teeth suddenly seems worth it.  And the most important thing I’ve learned so far is that drinking on a weeknight or during the afternoon isn’t irresponsible – it’s “networking”!

I was actually “networking” with one of my friends a couple of weeks ago, an amazing researcher in Trinity working on parasites, and we were lamenting about how none of our research was going how we were hoping.  For me, that’s not being motivated enough, for my friend, it’s none of her experiments going as planned – I definitely have it easy compared to a science PhD!  There was a pause in the conversation, and as I looked around, the thought hit me.  “You know what?” I announced. “To everyone else, the fact that we’re doing a PhD is pretty impressive.  Maybe we just need to be impressed with ourselves?”  We laughed and had another pint, but that idea has stuck with me since.  To answer your question, school is going great, Aunt Jen.  And when I’m finished in four years, I don’t know what I’ll do.  But I know I’ll be impressed with myself.

Maybe.

[1] http://www.paulineroseclance.com/pdf/ip_high_achieving_women.pdf

Reflection: Tackling the ethical conundrums of research at the Digital Economy Network Summer School

By Angelika Strohmayer

Building a City of Ethical Conundrums

Doing research is difficult, and no amount of training is going to prepare us for every single potential ethical question or incident in the field. While applying for ethics approval from the university is supposed to help you think about potential issues that may arise in your research, they don’t always make you think about all the little details, the small things that can happen when doing fieldwork.

When looking at ethics as a constant conversation you are having with yourself, your supervisors, your colleagues, and maybe even the ethics board, it helps you address these conundrums that come up through the process; the invisible questions.

These conversations are hard to have with colleagues or supervisors, let alone the official ethics board of the institution, as many of the issues that come up may be very personal and complex. On top of this, it seems to be that safe, judgement-free spaces to talk about these types of issues openly are also sometimes lacking.

To address this issue, three PhD students from Highwire Doctoral Training Centre (DTC) at Lancaster University and Centre for Doctoral Training (CDT) in Digital Civics at Newcastle University put together a workshops for other PhD students studying in DTCs and CDTs within the Digital Economy Network (DEN) at the annual DEN summer school (this year hosted by Open Lab at Newcastle University) on the 19th of July 2016.

This workshop was an opportunity for students to have a safe space to address any ethical questions, conundrums, or concerns that they may have come across in their work so far, or are worried they may come across in any of their future work.

Since we knew this was going to be a difficult topic to talk about, we addressed the topic in a serious, but fun and creative way: We built a city of ethical conundrums.

Using ideas from anarchist and critical pedagogies where embodiment, creativity, reflexivity, communication, and collaboration are important, we came up with the idea of creating a common language among participants to talk about these personal concerns.

The workshop started with a short activity to get to know one another, and a longer conversation on the importance of safe spaces including how we were going to make sure our workshop was a safe space. After this, there was a short period of individual reflection where participants created unique pieces of art to represent their own ethical concerns in silence. After sharing these with the rest of the group, the building of the city began.

Materials

Starting with simple language and concerns, we used black building blocks and markers to document the conversations that came out of the individual presentations. To address invisible issues that arise throughout the research process we added little clay ghosts, and to further complicate the conversations we ended up building in some Lego figurines to populate our city of ethical conundrums. After all these conversations, we tied balloons to the ghosts and came up with strategies of addressing these invisible issues. At the end of the day, we ceremoniously popped these balloons to let the glitter that had been filled in them fall onto the hostile-looking city we had built throughout the day. This made the city prettier and shinier, adding to the metaphor: while the kind of research we are doing in sensitive settings is difficult and at times may look hostile, when we talk about and address these concerns the research will be less hostile and more beautiful.

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This workshop helped us learn from one another’s concerns and allowed us to address many difficult issues in a safe environment. The workshop was a great opportunity to exchange experiences, reflect on ethical implications of previous, current, and future projects, and to engage in discussions around these concerns. We were able to map commonalities between the different research projects we addressed in the workshop, and to see that while all participants were working in very different environments, many of the ethical concerns appeared in all of our work. The safe space we created through the workshop allowed us to address both very detailed and unique concerns, but also broader ethical issues we see in academic research as a whole.

All by myself: what I have learned from doing fieldwork on my own

by Olivia Wilkinson.

While spending time online you have probably come across a clickbait article about someone who gave up work and went travelling on his or her own to discover the meaning of life. There have been lists of the top 10 reasons to travel on your own, hundreds if not thousands of blogs have been born to document their owners’ solo travel experiences, solo travel tips are just a quick Google search away, and countless articles have been published that extol the virtues of travelling on your own and discovering your true self along the way.

Solo travel for research is rarely cast in this light of self-discovery.  It only hits the news when tragedy occurs, most recently with the killing of an Italian PhD student in Egypt this year, which highlighted the dangers present while conducting fieldwork. In particular, the position of a woman researcher conducting fieldwork can be precarious, with a study finding that 18% of women scientists had experienced sexual harassment during fieldwork. While there have been highly worthwhile academic work published that deal with the position of women in fieldwork scenarios, I want to reflect more generally on what it’s like to be a solo researcher away from home.

My interest is in light of two relatively recent experiences. Firstly, I did my own PhD research in 2014 and 2015 in the Philippines. It’s a wonderful country that I regularly miss, and that I encourage you to visit. But at times I found the experience very difficult. Sitting in a hostel in Manila on the first few days of my trip, I felt small and alone. I Skyped my boyfriend and threatened to buy a flight home for the next day. My self-doubt at the beginning of the lengthy trip was high. I worried that I hadn’t arranged enough interviews and focus groups ahead of time. I worried that the ones I had arranged would fall through. I thought I was not going to come home with enough data to fulfil my PhD requirements. I worried about the travel I would have to do around the country. I felt inferior in comparison to the old hand aid workers I was trying to contact as part of my research. The months ahead of me seemed overwhelming. Instead of buying a flight home, I decided to persevere. I’m glad I did: my worries gave way to excitement and the trip turned out to be a success. Some pre-arranged contacts worked out, some didn’t, but I met new people, organised new interviews and focus groups, and came home having experienced the most intense, but rewarding, months of my research career thus far. In hindsight, I feel I gave myself too hard a time, especially at the beginning, and have learned to be kinder to myself as a result. I hope I can share some of the things I did to calm my worries and feel more confident.

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Olivia at the MacArthur Landing Memorial in Palo, Leyte, December 2014.

Guidelines for fieldwork

Secondly, I have recently worked with two other women, Bianca van Bavel and Brynne Gilmore, to bring together a set of guidelines developed by students and for students on the ethical conduct of international fieldwork (supported by the Development Studies Association of Ireland and the Irish Forum for Global Health). The guidelines emerged from conversations with other young researchers who had vastly different experiences of the amount of support they received in completing their fieldwork. After a comprehensive literature review and focus group discussions with other early stage researchers, the eventual set of guidelines we have formed gives highly practical recommendations on going about fieldwork in a responsible and ethical way, which is both safe for the individual researcher and the people they interact with during the research. If you are about to embark on research, or even if you are half way through, I would highly recommend reviewing the guidelines here. What we learned during this experience is how many times young researchers have felt let down by their institutions during their fieldwork, made avoidable mistakes, and generally been ill-prepared for the fieldwork experience. Although I was lucky enough to have a supportive background both personally and through my university, I still found the experience challenging. For those with less than supportive situations, the combination of factors can be extremely limiting.

While I urge you to look through the guidelines for specific advice backed up by the weight of evidence from our research, I will also briefly reflect on some of the key takeaways I personally have from my research experience, looking back with the 20:20 vision of hindsight as I come to the end of my PhD. So, what have I learned?

Tips to remember

Know your boundaries. This is about managing your own expectations as well as other people’s. Understand how likely you are to take risks, and whether you should take those risks. You are ultimately responsible for yourself. For example, are you prepared to take a lengthy bus journey on your own to a place you’ve never been before to talk to one interviewee who might not even show up? What are the risks that you might encounter to get to that one interview? Are they worth it for that particular interview? The answer may be yes, absolutely! But it may also be no and that’s ok. One less interview is not the end of the world.

Don’t be afraid to ask. There are advantages and disadvantages to being a young female researcher. I felt, on the one hand, that I had to push quite a bit to underline my seriousness as a researcher. It was another woman, in fact, who belittled my research as just a pet project for my own benefit. On the other hand, however, I felt that I could benefit from this as people were very willing to help me out, assisting me in making further connections, as well as things like figuring out transportation or buying a SIM card. A lot of this was about learning to ask people for help and not thinking I was asking too much or seeming too needy.

Have an itinerary – and tell other people about it. It’s useful to plan your time carefully. You may feel like you have months ahead of you, but it will go quickly. More importantly though you should let others know when and where you will be. Like the advice to hikers before they head into the forest, let someone know when to expect to hear from you. Of course schedules change rapidly and you should take up opportunities when presented with them, but it’s always best to let a few people you trust have a broad idea of when and where you will be.

Know when to take breaks. Fieldwork is really tiring. You spend a lot of time doing administrative tasks, waiting on replies to phone calls and emails, and conducting interviews, which is an intensive process. Navigating from place to place in a new environment can be exhausting. You may also stand out a bit. At the end of the day, I found myself wanting to hide away and get some down time. Watching trashy TV all weekend (yes, I did this on occasion) is not necessarily a waste of time. You may only have a short amount of time in a certain place and feel pressure to get a lot done, but burn out can happen quickly, especially when you’re on your own, and some time for recuperation is well worth it.

Try to include a scoping trip. I was lucky enough to be able to conduct a month-long scoping trip before my main research trip. I highly recommend it, as it allowed me to not only gain contacts and organise things for my subsequent, longer trip, but also familiarise myself with the places I was intending to stay and learn how to navigate around the islands I would be staying on. This was very useful for my second trip when I was working really hard on my data collection. I was glad to have that familiarity, which made me feel more at ease.

My PhD experience would not have been even half as rewarding without my fieldwork. I personally gained a lot and I hope that I can give back through my research findings. Yet something we underline at the very beginning of the fieldwork guidelines is that international fieldwork is not for everyone. It’s a commitment and there are risks, both of which you need to be aware of from the outset. Inform yourself with our guidelines and other documents out there. If it’s still for you, then I have one last recommendation: remember to enjoy yourself too! Take a weekend off to explore! You deserve it.

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Time for reflection while waiting for a focus group to start, Leyte, March 2015.