Dickson-Smith et al (2009: 61) suggest that ‘undertaking qualitative research is an embodied experience and that researchers may be emotionally affected by the work that they do’. They also state that this ‘emotional work’ (Hochschild 1983) is rarely theoretically or empirically investigated (Dickson-Smith et al 2009). Throughout this article I take a distinctly un-academic approach (and voice) to provide a personal account of my experiences of doing emotional work while conducting my PhD fieldwork. To add context, my PhD research focuses on disabled peoples’ experiences of sexuality and relationships. The research begins from the idea that disabled peoples’ sexualities are constructed in ways which may be disempowering, that their bodies and lives are largely degendered and desexualised, and that their sexual politics and cultures are inhibited within an ablest/disablist society. Thus, through collecting disabled peoples’ sexual stories (in a variety of ways), the research seeks to explore experiences and understandings of sexuality, both in terms of these constructions, and the ways in which disabled people manage and negotiate them.
Throughout the article I provide some reflections. Firstly, on the considerable emotional challenges encountered during the research process and the ways in which these were managed through both successful and unsuccessful coping strategies. Secondly, I detail the ways in which my (disabled) identity and biography impacted upon this emotional management and my relationships with participants. In order to embody such discussions I use excerpts from my own research diary and quotes from participants. The article concludes by asking the ways in which we, as a community of (postgraduate) researchers, can do more to share our research experiences with each other for the benefit of ourselves and our work.
The emotional challenges experienced throughout my field work year and beyond were not something which I had seriously anticipated. Naively, I never contemplated that listening to the stories of others, through which tales of isolation, loneliness, self hatred, and great sadness were not uncommon, would be as difficult and impactful as it turned out to be. I certainly never thought that it would affect my well-being or make me question aspects of my own life and identity as a disabled person. Many of the stories I was told were ones of pride, self-confidence, resistance, and personal strength. However, many were not and (for me) embodied the oppression, discrimination, and prejudice many disabled people face as part of their daily lives. For example, I was particularly touched by one interviewee called Sally*:
“I feel my disability has a huge impact on my self confidence and self esteem. I lack the confidence to make new friends or to approach people. I don’t like going out places I know there will be a lot of people as I feel like everyone is staring at and judging me. I avoid eye contact and only talk to new people if they talk to me first. As a result of my disability, [I am] extremely self conscious – I cover up with baggy hoody jumpers & scarves – and rarely leave the house…
But, in my head I have the ideal me – how I’d imagine myself to look and behave if I were ‘normal’ – not disabled. I’d have loads of friends – both male & female – I’d laugh lots and be daring, stay out late & be independent. I’d also have boyfriends, go out clubbing, to pubs, to festivals, & have real relationships…. My life would be radically different… I wouldn’t want to get involved with someone like me as I wouldn’t want to miss out on life or be held back, so I can’t expect anyone else to…”
– Sally, 21
To provide more of a background, my interview with Sally was carried out via email over several months. On reflection, this extended time period gave me the chance to emotionally invest in her story in ways that I didn’t fully appreciate at the time. Sally’s was a story which, with each email update, moved me to tears and kept me awake at night. I found it difficult to switch off from thinking about her. This was compounded by our interview coming to an abrupt and unnatural end – one day Sally didn’t reply and I never heard from her again. My coping strategy with this was predominantly through reflecting on why Sally’s story touched me so much. I’d heard similar themes regarding oppression and isolation from most other people in my sample, but something stood out about Sally.
I can now see that Sally’s story, and the stories of the other young disabled people I interviewed, particularly resonated with me because many of the core themes were things I have felt/experienced prior to ‘coming out’ as a disabled person, thus linking with my own biography. Disabled academic Tom Shakespeare helpfully uses the analogy of ‘coming out of the closet’ within lesbian/gay cultures to refer to people with impairments identifying with the disabled label and ‘taking it on’ as a social identity (Shakespeare et el 1996). My ‘condition’ – muscular dystrophy – is congenital (from birth), and I experience it daily in a very real way in terms of a significant mobility impairment. However, after spending my childhood in a wheelchair, special buggies, or on my dad’s back, as a teenager I strived to be ‘normal’. This, arguably, is the norm for most teenagers, but for me as a disabled person it meant hiding from whom and what I am. For example, I wouldn’t attend social events where I knew I couldn’t hide my difficulties (I ashamedly still do this now, but with much less frequency and for different reasons), rejected walking aids (a move which has resulted in me experiencing more pain as an adult), stopped walking if I saw a boy I liked (if I didn’t move, he’d never be able to tell), not park in disabled bays when I desperately needed to, and generally pretend I wasn’t one of ‘them’. This continued until my early twenties when I began working with disabled people as part of my career, made disabled friends, and began to learn about the extensive political and cultural aspects of disability – for example, the disability rights movement and disability and Deaf arts.
Looking back, there was a real honesty in the way Sally spoke which unnerved me. It not only made me feel uncomfortable about my own past, but also meant I wanted (as arrogant as I now realise it to be) to help her, talk to her, empower her, politicise her, and share with her our similarities. I felt incredibly restrained and powerless in my role as a researcher at this point – I was there to listen, record, and ask questions, nothing more. Our relationship was boundaried, restricted to its context, and, I felt at the time, did absolutely nothing for her.
However, there were other stories which weren’t linked to my own experiences or biography that I also found distressing to hear. For example, Grace, a Deaf woman who chose to share her experiences with me via writing her story down in a journal, had been physically and sexually abused by her partner for many years:
“Over the years he became very abusive. I was treated like meat, raped, sodomised. He told me I was boring and useless, only good for a fuck. I started to almost believe it. My confidence was at rock bottom. In my heart I knew that what he was saying was wrong but I felt helpless. And there was my deafness. I had left school with no qualifications, no career. A dead end job and an early marriage and children meant I had hardly any skills outside the home. He isolated me from my friends. He could not cope with me being deaf; as my deafness increased, he found it harder. He did not want a deaf wife.”
– Grace, 58
Understandably, I found Grace’s recounting of this time in her life very difficult to read. I can vividly remember dreading receiving her (emailed) journal entries as I knew the content would be gruelling to manage. As soon as an update would hit my inbox I would get an unsettling feeling in my stomach. Sometimes I resisted opening them for a few days, hoping that if I left them they may disappear. Suffice to say they didn’t, and that avoidance wasn’t an appropriate, or professional, coping strategy.
I also found I got close to participants who, if it weren’t for the researcher/researched relationship, could have become great friends. One spinally cord injured woman, Lucille, wrote her story via a journal and talked extensively about how (she felt) her disabled identity shadowed her sense of femininity and gender identity: her choices of clothing and footwear were dominated by her body, she felt “less of a wife” as she could no longer carry out a domestic role in the way she once had, and she felt invisible as a woman. Lucille found writing her story a cathartic activity which gave her courage and allowed her to explore parts of her life she had shut down after her injury. On our last contact, she told me that telling her story had empowered her in ways she hadn’t imagined possible; for example, she wore a skirt for the first time since her accident (10 years earlier) because she “finally felt comfortable as a disabled woman”. Similarly, another interviewee called Abram got back in touch after taking part to tell me that talking about his oppression had invigorated him to change the aspects of his life with which he had not been happy: he had felt dominated by his overbearing parents who he said controlled his life and didn’t allow him privacy. He reported that expressing his thoughts, ideas, and feelings in the interview gave him the strength to take control of his finances and set new boundaries with his parents. While in hindsight I take no credit for these acts of considerable determination and courage, at the time I experienced these (emotional) connections in a very powerful way. I felt as if my research (and therefore, me) had become integral within these narratives of emancipation, or at the very least was experienced as a catalyst for change.
At other points I experienced hearing the stories of others as harmful in terms of my own well-being. As a person with muscular dystrophy, my work was embraced by the Muscular Dystrophy Campaign which resulted in publicity (see here, pgs 16-18, The Sex Factor 2009) and a fantastic chance for me to gain access to participants. As a result, a significant number of my sample had the same umbrella condition as me. The term ‘muscular dystrophy’ (hereby MD) refers to a wide variety of conditions which are characterised by a degeneration of muscle in the body over time. Types of the condition differ in terms of speed of progression, severity, particular muscles, time of onset, and trajectory. Many types are life limiting or shortening, though some are not.
Significantly, despite being diagnosed with MD as a baby, my specific ‘type’ has always been undiagnosed. The fact that I have experienced very little identifiable progression means doctors have estimated that it’s unlikely to be extensively progressive, or at best, that progression will be slow and possibly limited to certain bodily areas/functions. Though, as with anything, there are no guarantees. This is not, oddly, something that regularly enters my consciousness (though I would be lying if I said it didn’t arise when when I think about my future: long-term career prospects, motherhood etc). However, this changed when I began interviewing others with MD. All but one had a progressive form of MD and this often came out in their narratives in a variety of ways – young men like Mark, Robert, and Abram wanting to experience sex before further progression, women like Rhona and Jane talking about avoiding future motherhood, and husbands leaving wives upon diagnosis and/or progression, like Ann. The excerpt below is taken from my personal research diary on the day that I met Ann:
Research diary entry: 6th June 2009
Hearing Ann’s sad story of her husband rejecting her at the onset of her disability because he ‘didn’t want a disabled wife’ was disturbing. She hid nothing from me and it upset me greatly. Later that evening at home I broke down to my partner, partly through relief that the day was over, but more out of insecurity that he could, in theory anyway, leave me in much the same way. Ann reported a strong relationship, a ‘great man’ who loved her very much, yet I had all of these things and so what would stop my partner running should the ‘shit hit the fan’, as Ann put it? I was, for the first time, doubting my partner. “What makes us so different?” “How can you say you won’t leave?”… Realistically and logically, I don’t think that will ever be my life. I genuinely believe in, and have more faith in my partner than that, but when it’s emotively in front of you all day it’s impossible not to be affected by it. It was at this juncture that I suddenly realised that my research could be harmful. Not just for those whose stories I hoped to hear, but harmful to me, my sense of self, my relationships, and those around me. As I heard Ann’s words I realised that she was voicing my worst fears. This was not going to be an easy thing to listen to everyday in interviews, nor to come home with and pretend that my ‘day was fine’. I have to find a way to manage these feelings better than I did that day. I may find elements of stories that remind me of my worst fears, or echo my feelings about myself and my body on the darkest days… How will I deal with this? Talking to supervisors? Talking to my partner? Talking to a counsellor? This is something I am going to monitor closely.
This diary excerpt was written following a particularly bad day, and while I am cringing at the thought of others reading it, it does raise the issue of where and with whom to share such upsetting experiences while carrying out field work, particularly as postgraduate/early career researchers. The threat of progression had suddenly become very ‘real’, and it filled me with a terror that I didn’t really know how to handle. Unfortunately, my partner took the brunt of it when he shouldn’t have done – another problematic coping strategy. I did discuss these feelings with my (incredibly supportive) supervisers, but the superviser/supervisee relationship is, ultimately, a professional one and is not conducive to such sharing in terms of both context and time. The most productive way of managing the emotions which arose, I quickly discovered, was writing it down in a research diary. This allowed me to express fear, irrationality, frustration, and sadness in a way which didn’t harm anybody else or my work. I wrote in the research diary at the points where it became too much. These kinds of strategies, I believe, should be made more public by researchers and that we, as a community, should recognise the importance of sharing our experiences.
A way forward?
To conclude, writing this article has not been easy – five drafts on and I’m ready to be exposed! As, researchers we collect, gather, manage and analyse data, but rarely reflect on how data impacts upon us. We may also experience a range of emotions, from feeling restrained to powerless, powerful, fearful, sad, joyful, and frustrated, meaning we carry out extensive emotional work (Dickson-Smith et al 2009) – yet we rarely share it. While I can accept that both my research and my situation are unique, and that the themes within this article may not be relevant to everybody who reads it (much of it may even seem quite alien), it does highlight a need to reflect on our fieldwork experiences and share these as a community. My (sometimes, clumsy) coping strategies got me through – just – but there must be better ways, and I propose that we can find these in one another. Sharing our emotions, journeys, management/coping strategies and thus creating informal support networks, I propose, may just be the answer towards lessening the burden of emotional work we all experience throughout the research process.
* All names have been changed.
- Dickson-Smith, V. et al (2009) ‘Researching sensitive topics: qualitative research as emotion work’, Qualitative Research, 9: 1, 61-79
- Finlay, L. (2002) ‘Negotiating the swamp: the opportunity and challenge of reflexivity in research practice’, Qualitative Research, 2:2, 209-230
- Hochschild, A. (1983) The Managed Heart: The Commercialization of Human Feeling. Berkeley, CA: University of California Press.
- Shakespeare, T., Gillespie-Sells, K., Davies, D., (1996) Untold Desires: The Sexual Politics of Disability. London and New York: Cassell
University of Warwick
Categories: Research Profiles