Lived Experiences as a Starting Point for Social Work Research—Possibilities and Challenges

Introduction

It’s a theatre, you go in and play your role, then you get off, I’ve done my part, that’s how I go into work. […] I have to get changed … work clothes, name tag, so I enter into a role, so maybe it’s not me personally [who’s affected]? That’s how I think or try to protect myself, it shouldn’t be [directed] towards me personally. (‘Patrick’, assistant nurse born in Kenya, cited in Storm, 2018)

The above quote comes from an interview I conducted in the year 2017 with ‘Patrick’, based on his experiences as a visibly racialised non-White man working as an assistant nurse at a nursing home in Sweden. He was one of several visibly racialised women and men I interviewed as part of my doctoral thesis entitled ‘The Meaning of Gender and Skin-Colour in the Everyday Life of Nursing Home Care: The Impact of Organisational Conditions’ (Storm, 2018). The aim of the thesis was to examine voices, descriptions, and lived experiences of work in elder care for staff who, based on their gender and visible racialisation, did not embody the expected image of staff in elder care as a White, Swedish-born woman. A recurring theme in the interviews was accounts of situations where the visibly racialised staff were exposed to racist comments from the older care recipients. This is what ‘Patrick’ reflects on in the introductory quote; his narrative shows how he uses his work clothes and name tag as ‘barriers’ to prevent the racist comments from getting to him.

My choice of the thesis topic is partly built on the fact that Sweden, like many other high-income countries, has come to face challenges concerning an increasingly ageing population along with growing difficulties in recruiting enough staff to work in care. This means that Sweden is following an international trend where women and men with migrant background are pointed out as an important recruitment base (Torres and Lindblom, 2020). In spite of this, there is a lack of knowledge on how this category of care workers, who play an increasingly important role in Swedish elder care, experience their working conditions and work situation. I was keen to contribute to filling this knowledge gap. Partly, or perhaps above all, my choice of thesis topic and the driving force behind it stemmed from how it connected to my own lived experiences.

I am a visibly racialised man myself (born in Sri Lanka but adopted to Sweden in 1977), and I have fifteen years of previous experience working as an assistant nurse in elder care. I started working in elder care in 1995 at a time when, to borrow a simile from Ahmed (2007), it was like entering with a dark body into a White room, which elder care was at the time. This White room can partly be understood through the majority of my colleagues being White and Swedish born, and partly by the majority of care recipients I met also being White, Swedish-born older people. Even though this changed over the years I was working there, my social positions based on gender and skin colour contributed to me experiencing many situations of Otherhood, both in a more positive sense and in a negative sense in the form of racist comments or discriminatory actions based on my skin colour. Taken together, this meant that situations and attitudes like those described by ‘Patrick’ in the introductory quote, just like most other interviews I conducted, could contain voices and descriptions of lived experiences that I could connect to situations that I myself had experienced during the years that I worked in elder care. In hindsight, I realise that I was probably not sufficiently prepared for how important my own lived experiences as a visibly racialised man would come to be in connection to the narratives I got to hear on encountering racism, discrimination and exclusion in work in elder care. This was the case not only in relation to my earlier experiences of the daily practices of elder care but also my experiences of living as a visibly racialised person in a society where Whiteness constitutes the norm.

Against the background of the experiences I have had, the purpose of this article is to reflect on what it from a personal perspective can mean to conduct research with the purpose of making visible voices and lived experiences that are close to one’s own. What may be the advantages and disadvantages, and how can one deal with them? One can also reflect on what it means to study a group of people who one from one’s own experience knows rarely gets the opportunity to get their voices heard in research or in public debate. Although my point of departure is that it is neither possible nor desirable to consider oneself a spokesperson for people, today I have a different platform to raise these issues, at least in comparison to the possibilities and the voice I had during the years when I was working in elder care.

This article is divided into two sections. I first describe how lived experiences constitute a position that works as a vantage point for how we view life, but which also—perhaps even more so—can be an important driving force for seeking knowledge in social work. Thereafter, I will reflect on the feelings that were evoked when I got to hear about the interviewees’ experiences of encountering racism, which both connected to things I had experienced myself and were something that I needed to relate to during data collection, analysis and presentations of results from my thesis.

Lived experiences as a vantage point

I once heard that ‘no woman or man is an island’. I take this expression to be a good illustration of how our experiences, regardless of whether they concern everyday knowledge or starting points for research, always are anchored in something. It can be ideas, prior knowledge or lived experiences that you yourself or someone around you has or has had. When we direct our gaze towards research, the idea of the ‘objective researcher’ is well captured by the concept of ‘the God trick’ framed by the feminist philosopher of science Haraway (1988). The concept questions the possibility of researchers having the ability ‘of seeing everything from nowhere’ (p. 581). Haraway’s line of reasoning can be used to highlight that the researching subject with their lived experiences neither can nor should be considered as separate from the researcher’s experiences, perspective and vantage point.

From a more overarching perspective it is important to see and acknowledge that lived experiences are something we all have and that they to various extents affect our everyday lives and the ways in which we view and understand what we encounter and experience. However, most lived experiences aren’t really anything that we tend to reflect on in everyday life, and neither do we reflect on whether and if so how they affect different aspects and situations in everyday life. Then there also are those lived experiences of which we are very much aware and which bear great significance for how we view life, existence and the possibilities and challenges we face. Regardless of how much we reflect on our lived experiences, it is important to remind ourselves that some can be more difficult to handle and to admit to oneself than others. It can be something that you really want to put behind you, but it can also be that some lived experiences can be perceived as more stigmatising than others. I myself have experience of living around twenty years with mental ill health that comes in periods. This has meant both periods of psychiatric in-hospital care and ongoing contact with psychiatry for therapeutic and pharmacological treatment. These twenty years with mental ill health, and as many years of contact with psychiatry, have without a doubt had a big impact on my lived experiences, both in everyday life and in working life. Today I speak openly of these experiences, but it hasn’t always been that way. Ten years ago, it’s highly doubtful that I would have wanted to talk about my lived experiences of mental ill health as a driving force, had I chosen to conduct research within the area. Perhaps I would have worried about how my openness about mental ill health would be perceived by my colleagues in academia—both because of the stigma and taboos surrounding mental ill health, and because mental ill health stands in stark contrast to the norms associated with academia, such as efficiency and productivity. When I instead compare my lived experiences of mental ill health with living as a visibly racialised person in a society where Whiteness is the norm, I see both similarities and differences.

First, in the Swedish context one can claim that racialisation, in comparison to mental ill health as lived experience, is less associated with stigma and taboos. However, visible racialisation can at both the structural and the individual level create different experiences of Otherhood and exclusion through direct and indirect racism and discrimination. I probably would have been able to choose to hide my mental ill health, in contrast, by simply not talking about it. That way I also could have undercommunicated the significance of my lived experiences of mental ill health as a driving force if I had chosen to focus on the topic in my thesis. I cannot, however, hide the fact that I am visibly racialised and isolate that experience from my choice of writing a thesis that focuses on highlighting and analysing voices and perspectives of visibly racialised staff in elder care. Rather, both my body and my experience of having worked in elder care became obvious in my encounters with the people I interviewed, my thesis advisors and my colleagues at the university. It thus became necessary for me to find a way of dealing with my own social position and experiences and their significance in all parts of the research process.

From a client-oriented perspective, as Maglajlic and Ioakimidis (2022) show, it appears as though ‘there is a growing research and policy impetus to ensure meaningful collaboration and co-production with people with lived experience in health and social care’ (p. 2433). This sheds light on an important ambition for research in social work to not only be about people with lived experiences, but also influenced by people with experiences of different areas of social work, such as for example social childcare, substance abuse, economic vulnerability, elder care and transnational migration. It is increasingly recognised that people’s experiences of social problems and their encounter with social services actors are a source of knowledge acquisition and knowledge development, both in the everyday practices of social work and in social work research.

But to what extent are the researcher’s lived experiences of the areas that are part of social work considered an asset, both as a starting point for research itself and as the knowledge contribution that they can generate? From a Swedish perspective, my impression is that these questions have not been given much space in research in social work. This in turn contributes to the researcher facing such questions being left to their own devices, both when it comes to how to approach the opportunities and challenges that can come about and how to deal with them when they do come up. I further think that it in the Swedish context still is relatively unusual for researchers to take their starting point in their own lived experiences as a driving force in the research work. There are probably several reasons for this. One could be that many of the topics that research in social work focuses on take their starting point in areas that to a certain extent are associated with different forms of social vulnerability. This means, on the one hand, that there may be limited opportunities for those who have such experiences to be able to find themselves in the position to have the opportunity to conduct research. On the other hand, researchers who perhaps do have lived experiences of the studied topic may choose not to highlight them as a driving force or a starting point.

When I started my doctoral studies, I was the only one in the group of new doctoral students at the department who was conducting research that in a clear way connected to my own experiences and that was so closely linked to my own social positions. This meant that I felt rather alone when it came to how to deal with the opportunities and challenges that my own experiences posed in the research process. In line with what Farahani and Thapar-Björkert (2017) point out, I wanted to regard my lived experiences as a source for analysis, but at the same time, I felt the need to find a balance between not playing down the significance of those experiences while also not giving them interpretive priority.

The risk for the latter seemed less likely. When I started my doctoral studies, it had been more than four years since I had done my last work shift in elder care. I was also very much aware from the start that the memories and experiences that I had had could not in any way be considered universal. During the interviews I noted that I got to take part of experiences that both challenged and developed my thoughts and perspectives on how different experiences could be analysed. Nonetheless, I felt some concern in the early days that my texts and interpretations would be taken to be too coloured by my own perspectives and positions. These are important questions, of course, but they also give rise to new ones. Is it particularly important for researchers who have lived experiences of what we are studying and who also embody that experience (in my case being visibly racialised) to be reflective when the similarities between the researcher and the study participants are not as obvious?

Harbouring and handling feelings based on shared experiences

What significance do shared experiences, such as for instance being visibly racialised, have for how, say, the interview situation unfolds? On the one hand, one can imagine that the ‘similarities’ contribute to things being taken for granted in a way that would not be the case if the ‘differences’ were more pronounced. This has been discussed clearly in books on qualitative research methodology. What I on the other hand was less prepared for were the feelings that were awakened in me when I read and reread the interview material during the analysis work.

I have experienced [racist remarks] from residents, ‘dirty’ […] and swear words. Relatives to the resident can also remark, ‘How are you going to take care of her? You know nothing.’ There is nothing you can say about it. I’m an immigrant. (‘Yasmine’, assistant nurse, born in Syria, quoted in Storm and Lowndes, 2021, p. 11)

The excerpt above from the interview with ‘Yasmine’ is an example of an interview that touched me deeply. What really got to me was not just the shared experience of encountering racist and offensive comments mostly from the older care recipients, and also from their relatives. It was also her attitude of there not being anything to say about it because ‘I’m an immigrant’. Taking part of these experiences became more emotionally trying than I had thought of before, not least during the analysis work which meant that I dedicated long periods of time to reading, coding and thematising the interviews. I also noticed that I at times became quite exhausted and that the experiences of reading about racism got under my skin This led to some discomfort when my lived experiences and the interviewees’ voices on their lived experiences led me to start observing racism’s different forms of expression in my own everyday life in a way I had not done before, or perhaps had not wanted to?

Concluding reflections

The experiences I describe above also came to be an important driving force after my thesis to spread the results of my studies to other contexts, both within and outside of the university’s walls. As I’ve pointed out earlier, I think it is important that we as researchers, regardless of shared lived experiences or the absence thereof, believe that we can give voice to the people we have studied. While this generates an interpretive priority that I don’t consider desirable in either everyday life or in social work practice or research, I consider it important to bring forth the voices of underprivileged groups. By this I do not mean that people are underprivileged from within, but rather that they become so by being in a system which only to a limited extent allows them to get their voices heard. Yet, here I can wonder whether I feel—or should feel—a particular responsibility to bring forth these voices, not least now that I have a different ‘platform’ than before. How do I best manage this opportunity, both for those I have studied and for myself? I particularly remember one presentation of my research a few years ago where the relatively large audience mostly consisted of White Swedish-born people. During the break, a visibly racialised woman came up to me and asked, ‘how does it feel as a non-White person to be standing there lecturing on experiences of racism when everyone who’s listening is White?’ I had never been asked that before, but understood that she, based on her lived experience, put into words what I had reflected on myself.

With this contribution, I want to encourage people with lived experiences connected to social work to also find the courage to use them to seek knowledge. I also want to call on researchers to dare to make the conscious choice to take a clear starting point in their own experiences in their quest for knowledge. At the same time, lived experiences are embodied, which means that you can feel them and be moved by them; this needs to be highlighted and receive even more attention.

Author Biography

Palle Storm is a social worker and has a Master and PhD degree in Social Work. His research focus focusing on lived experiences among migrant care workers employed in home care settings or residential care settings in Sweden, Canada and Norway. He is inspired by his own experiences of being visibly racialised (Born in Sri Lanka and adopted to Sweden in 1977) and fifteen years of earlier work in elder care. He has also lived with mental illness for several years, and also works to spread knowledge about how everyday life can be and how employers can make it easier for people with mental illness to be included in working life.

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