‘Feeling what I write’: researching disability and leisure with experience of living with a disability

ABSTRACT

Our different experiences of the world can alter how we carve our identities and sense of place within it. Thus, many have argued that writing and sharing our personal experiences in research can often help us give others a different understanding of the world. Having a personal experience of a phenomenon can also assist researchers in the formulation and conceptualisation of their different ideas during the research process. However, whilst valuable, researchers’ different memories and recollections can negatively impact the research process as well. Sometimes different memories and recollections can alter what we see within our research and how we see what is happening in the real world. Therefore, this research note explores how our embodied experiences of a phenomenon can affect our research. It will centre around my own experiences of living with a disability, listening to those of other disabled people, my ever-changing professional and personal understanding of leisure, and how my own personal experiences have affected my interactions with disability and leisure research over the years.

KEYWORDS:

• Disability
• CP
• leisure
• autoethnography
• reflexivity
• emotions

Introduction

Leisure has often been seen as a concept of ‘free time’. In other words, a period of time that people have the right to, after their work and home responsibilities, giving them a chance to relax, unwind and develop as a person (Haworth & Veal, 2004; Veal, 2002). However, such a definition has often been criticised because, in reality, leisure can be characterised as being much more than this – a moment of ‘free time’ (Blackshaw, 2010; Rojek, 2010; Wearing, 1998). Additionally, leisure can be characterised as a ‘ … state of mind … associated [with the] social and cultural contexts of life … ’ (Henderson, 2010: 5, emphasis added). Consequently, in addition to ‘free time’, leisure can also be characterised as an experience which is fluid and can be ‘felt’ in different ways, shaped by different material and discursive forces (Dattilo & Frias, 2021; Fullagar & O’Brien, 2018; Fullagar et al., 2019; Fullagar, 2008; Kleiber, 2020). Therefore, within this issue of Leisure Studies, Scott and Fletcher (2023) stress the importance of a sociological understanding of our emotions within the context of leisure, and they are quite right to do so. A sociological understanding of our emotions helps us deepen our understanding of this human phenomenon (Fullagar et al., 2019; Fullagar, 2008; Rojek, 2010). A sociological understanding can help us to understand how our emotions interact with the leisure experience and how the leisure experience interacts with our emotions (Fullagar et al., 2019; Fullagar, 2008; Rojek, 2010). Consequently, within this research note, I want to help reinforce this point. Although from a somewhat different perspective. I want to explore the sociological interactions between our emotions and the leisure experience from a researcher’s perspective, particularly how a researcher’s own experience of leisure can influence the way in which they study and write about leisure.

As a phenomenon, there is no one single way to understand leisure as the leisure experience can be consumed in different ways, across different spaces, with different people and with particular goals in mind (for example, with goals of spending good quality time with one’s family or to experience time away from the pressures of everyday life) (Crouch, 2000; Kleiber et al., 2011). Hence, methodologically, there can be numerous ways of studying and understanding leisure (Jones, 2022; Henderson, 2006). One of the ways in which we, as researchers, can understand leisure is through sharing our own stories and experiences of leisure, for example, through an autoethnography.

Sharing our own stories and private lives with the public can make us feel vulnerable as researchers (Johnson, 2009). However, Johnson (2009, p. 489) argues that it is:

” … the power of story to move readers. In acknowledging that power, in attempting

to harness it to intervene in what is deemed possible to understand and to enact in our

professional lives, researchers become vulnerable. However, marginalized groups are made vulnerable every day. I suggest that it is in the taking of that risk and the sharing of that vulnerability that we might find ways to know the world better”

I am a researcher who draws on my own experiences of living and consuming leisure with a disability to help inform our understanding of disability and leisure. Though, I feel my position as a disabled researcher often influences me to ‘feel what I write’ when researching disability and leisure. As a result, within this research note, I want to understand how my personal experiences affect my work on disability and leisure. I want to understand why ‘I feel what I write’ and whether I sometimes ‘write what I feel’. Additionally, ending this paper, I want to pass on some recommendations on what other researchers may wish to think about when drawing upon their experiences in research.

My Experience of Leisure and Living with a Disability

To start exploring how my experiences affect my research, I need to firstly introduce myself. As I have mentioned elsewhere (Condie, 2021), I have a level of Cerebral Palsy (CP) which affects all four of my limbs, balance, and muscle tone. Although I can walk and talk, my CP also affects my speech, tiredness levels and my experience of soreness in my muscles – which can all impact on my mood, mental health and how I interact with the world. Throughout my life, I have been able to experience a range of good and fulfilling things, many of which include leisure. I have competed in different sporting events. I have had many good times with friends and family. Also, I have enjoyed many holidays, trips away, and outdoor roams in my powerchair. However, within my life, I have also experienced increased mobility difficulties, muscle tightness, pain, chronic fatigue and – of course, negative attitudes, stigmas, and environmental barriers. All of this has also affected my psycho-emotional wellbeing.

Thomas (1999) explains that when understanding disability, it is not just about understanding the different disabling barriers ‘out there’ in society that disabled people face, but also the social, environmental, economic and cultural barriers, which limit disabled people from living their lives to the fullest. Yet, understanding disability also needs to include the knowledge of how the experience of those barriers, and the effects of one’s impairment, affect a disabled person’s identity and emotional wellbeing (Thomas, 1999). Even with a disability, everyday life is an experience of different factors and events (Reeve, 2020; Thomas, 1999). Different restrictions imposed on the body – whether from the effects of a disabling society or from one’s impairment, can negatively affect a disabled person’s confidence, self-esteem and belief in one’s own abilities (Reeve, 2020). Reflecting on my life, I can certainly identify with such arguments. I have had many positive experiences in my life, but I have also experienced several negative ones, which have caused me emotional distress and made me feel different, anxious, depressed, and uncomfortable as a person. I have experienced different social interactions and bodily sensations that have altered how I feel about myself (Leder, 1990; Reeve, 2020). However, when thinking about why I am so passionate about leisure studies, I think it is because leisure has helped me a lot in my life, particularly in ways to combat some of those negative experiences and emotions that have affected my mental and physical health. It has been the enjoyment of different activities that has made me feel empowered and connected as a person.

A range of leisure activities, from train travel to sport, from going out with friends and my carers, to going to the gym or watching one of my favourite TV shows, have helped me so much in my life. Leisure has helped me to feel like I am more than just my disability. Even when I was younger, doing and participating in different leisure activities helped my wellbeing. I remember going out with my carers to the cinema, shops and the bowling alley, in the evenings, after school. I also remember at school getting involved in Boccia and Powerchair Football – training and competing alongside my friends – sometimes even going away with them to competitions. I remember the experiences of going away on my school’s Powerchair Football team trips away particularly well, because they were great experiences to be involved with. It was great going away with them and being part of the school’s Powerchair Football team – representing my school at different UK Powerchair Football competitions. It was not just the element of competing that made those trips special for me. It was also those interactions I had with my friends, the laughter I had with my coaches and support workers, and that experience of being in a place away from home.

These moments and interactions helped characterise those experiences even further for me. I felt I was more than just my disability. Participating in such activities allowed me to experience self-expression, an engagement with the world and a feeling that I could one day live independently. The different sensations of enjoyment, experiencing autonomy, experiencing the control of the powerchair, and the social interactions I had with my peers, all allowed me to feel happy as a person, but also that I enjoyed making my own decisions and being in charge of myself. Similarly, such an experience (and there have been others), gave me a flavour of how I wanted to feel in my life – joyful, independent, and socially connected. Such qualities were (and still are) important to me in maintaining my good wellbeing. However, when it comes to researching and writing about disability and leisure, I have often found that my work can trigger me to relive and experience such moments in my life – something which I will now describe as ‘Feeling What I Write’.

Leisure and Researching with My Own Body – ‘Feeling What I Write’

All autoethnographic pieces of work involve making one’s personal story public as a way of broadening out and challenging other people’s ideas of a topic (Carless, 2010; Smith, 1999). Therefore, any investigation of an issue that you have personal and emotional bonds with is not just a process of discussing different sides of a debate (Richardson & St. Pierre, 2018), but rather it becomes more of a situation where you are trying to bring other people into your world and explain the multilayered and complex nature of that particular world to others (Richardson & St. Pierre, 2018; Smith, 1999). Similarly, using the term ‘Carnal Knowing’ to describe such a process, Mellor and Shilling (1997) argue that we do not just learn about the world through books, journals and traditional ways of learning (for example, through university lectures or seminars), but we also learn about the world through the social, personal and cultural experiences that we consume.

Due to the different experiences I have had in my life, I have found when researching disability and leisure, and when exploring my own and other disabled people’s experiences also, it is quite difficult to separate out the social, from the emotional, from the physical, from the cultural and environmental. However, because I have had so many positive and negative experiences growing up, I feel that my experiences have helped me to understand that the issue of disability and leisure goes way beyond a conversation about what is a wheelchair, free time, a physical impairment, or a particular activity. I have learnt that both the construction and nature of disability and leisure is a discussion, deeply rooted in the complex social, emotional, physical, biological and cultural nexus of what it means to live and experience leisure with a disability (Aitchison, 2003, 2009). I have also found that different discussions on disability and leisure can often drag me back and trigger different memories from my life. For example, when I went to the shops or cinema with my carers after school. Such memories remind me of the different emotions that I experienced, and how such activities allowed me to feel independent, empowered and engaged in life. Consequently, when starting to reflect upon why ‘I feel what I write’, I have learnt that because different leisure experiences have helped me so much in the past, they have encouraged me to share my interest in leisure, disability and wellbeing with others.

Throughout history, there has often been different arguments for how we can understand disability and disabled people within society. These include the Medical, Social and Affirmative Models of Disability, and the theoretical lenses of Critical, Feminist and Postmodernist Disability Studies (see Condie, 2021). For me though, as a disabled person, privately – away from academia, I have often found it difficult to think about disability through a single academic lens. This is not to say that I do not agree with, or understand, each of these perspectives – I do! As I have mentioned previously in Condie (2021, p. 364), each of these perspectives do bring a unique contribution to the field of Leisure Studies:

Such differing theoretical approaches can be quite helpful for us to see disability and disability leisure from different angles, as well as diversifying our knowledge of the two topics

However, because of my personal experiences, I feel that I am shutting a bit of my own – and other disabled people’s stories off, if I just focus on one particular perspective of disability within my work. I feel that I am just adopting an ignorant research position in which I do not acknowledge all of the individual physical, social, emotional, cultural and environmental factors, that influence my own and other disabled people’s lives. My experiences have shown me that the effects of my impairment are real, sometimes making it harder for my body to rest, relax and appreciate the environment around me (Leder, 1990; Sparkes & Smith, 2008). But, at other times, my experiences have also helped me to understand that I can still experience enjoyment, pleasure and meaning running through my body even though I may have CP. As a result, I feel that the process of writing, reading or talking about disability and leisure can become quite complex and personal at times (Richardson & St. Pierre, 2018). This is not only because of how the literature and other disabled people’s stories have informed my understanding of disability and leisure, but also because of how my own personal recollections, memories and experiences have given me an understanding of what it means to experience leisure with a disability. Although, the challenge I have sometimes found is the ability to stay open minded when exploring other disabled people’s experiences of disability and leisure. The first time I learnt about this was when I was doing my Masters by Research’s project (Condie, 2016).

Being Reflexive and Self-Aware of the Experiences of Others

Upon graduating with my undergraduate degree in Tourism Management, I felt that the field of tourism studies was beginning to understand the need for accessible forms of tourism, but did not acknowledge enough the ‘leisure’ aspect of tourism generally, or how disabled people felt when experiencing different forms of tourism. With having my own experiences of leisure and tourism, I then decided to pursue a career in research, where for my Masters by Research project, I decided to interview five people with physical impairments about their lives and leisure experiences.

Because I wanted to have a focus for my research – using my knowledge of tourism, I decided to interview them about what they enjoyed when visiting a city as part of their leisure time. Drawing on my own experiences, I predicted that some of my participants would tell stories of enjoying walking around city centres, seeing different monuments and going to coffee shops. For me, these were enjoyable – especially when I was younger – as it felt like I was going somewhere and doing something objective which, all in all, made me feel autonomous. However, upon interviewing my participants, I soon realised that these were only my experiences and my other participants found going to football matches, gyms, music gigs, comedy nights as well as the local athletics club, more enjoyable (Condie, 2021). Such a process indeed challenged and questioned my understanding of what it meant to experience leisure with a disability, both professionally and personally. As a researcher with a disability, I just assumed that – because they had a disability as well – the participants would have similar interests to me and understand why I was focussing on activities such as cinema outings, exploring a city and going to different bars and restaurants. I felt my participants’ experiences of leisure would just mirror my own.

Looking back at my Masters, it felt like I wanted my experiences and emotions to be heard as well. I wanted to add my own story of how disabled people’s leisure experiences are made up of more than just ramps, lifts and hearing loops. In hindsight, one could argue – why didn’t I just do an autoethnography for my Masters, and my reply could have been that, a) I wanted to hear the experiences of other disabled people, and b) I felt that conducting a study which was all about me would not even be something that I could do. However, since my Masters, I have learnt that the personal is sometimes political, and the political is sometimes personal, especially when you are researching something that you have deep physical and emotional bonds with (Thomas, 1999). Likewise, I have learnt that qualitative research is a hermeneutic process (Sparkes & Smith, 2014), and that from interpreting people’s everyday experiences, a researcher can often develop their own feelings and thoughts about the data (Jones et al., 2013). As a result, because of my own personal experiences, I have found that I can often feel what I write because I have lived with a disability myself, and can therefore identify with what I am writing about. For example, if I am listening to another disabled person talking about how important it is to be involved in the sport of Boccia (see Condie et al., 2022), such a personal story would sometimes remind me of the time when I felt included in sport at my specialist school, especially when we did Powerchair Football. Even when I have read about leisure, and have read about the therapeutic nature of the leisure experience for disabled and non-disabled people (Dattilo, 2017; Kleiber et al., 2011; Kleiber, 2001), such conversations have reminded me of how different activities have made me feel in the past, and the positive contribution they have made to my life. Again, such experiences have (and still do) influence me to feel what I write. However, as someone who has matured as a researcher since my Masters, and has done other pieces of work since then (Condie et al., 2022; Condie, 2017, 2018a, 2018b, 2022), this leads me to wonder – why do I feel what I write? Put differently, do I write what I feel because I have a need to write about what I have experienced in the past?

Writing What I Feel

Sparkes (2020) states that all autobiographic and autoethnographic pieces of work are context-specific, and written from a particular angle. Such pieces of work are written by the researcher for a specific reason – for example, to help the author highlight a particular issue to other people, to change the understanding of that specific issue, or to allow the author to tell their own story, relationship or experience of a phenomenological reality, such as what it is like to experience leisure with a disability (Smith, 1999; Sparkes, 2020). Therefore, when thinking about why I feel what I write, there are multiple reasons. It depends on what I am writing about, its purpose, and how that particular set of writing makes me feel. For example, whether what I am writing about makes me feel excited, hurt, emotional or like I am letting go of a particular issue in my life and using my writing as a way of moving forwards. Additionally, it can also depend on what I am personally experiencing at any one time (the feeling of a deadline looming or a feeling like I am telling a story to the reader). It can also be the case that writing helps me to understand my experiences. For example, when I have previously written about the different ways in which leisure has positively affected my everyday life, I have found that it has not necessarily been the idea of going out and doing a leisure activity that has helped me. Rather, it has been how the activity in question has allowed me to feel autonomous, relaxed and like I have a connection with the people around me.

I have also found that depending on what I am writing about, my writing can influence me to be even more passionate about my research and that of discussing different aspects of the leisure experience, from a disabled person’s perspective, with the reader. Different stories of the world can often allow us to understand the little details of life – alongside the big ones – that transform the way in which we see the world (Johnson, 2009; Plummer, 2001). Indeed, it can be argued that one of the reasons why researchers choose to share their stories with others is to let people know about the real life, subjective issues of a particular phenomenological experience – especially if they feel such issues are underacknowledged and misunderstood by other people (Johnson, 2009; Smith, 1999; Sparkes, 2020). As a result, I have found that sometimes when I write, I do become passionate about my writing because I do not just want to communicate to the reader the ‘big’ things that affect disabled people’s lives (the importance of accessible environments, positive social attitudes, opportunities for disabled people etc), but also the smaller details that I feel may otherwise be overlooked (the important role of support workers and personal assistants, or the desire to feel autonomous and like one can freely express oneself). As I have explained throughout this paper, apart from being a disability and leisure researcher, I am also a disabled person who lives with Cerebral Palsy (CP). Consequently, whenever I write, I am acutely aware that disabled people are much more than people who have different sets of impairments and who have differing needs. Disability is a multidimensional human experience where there is a person behind every disability, and there are a range of different social, emotional, cultural, economic, environmental and political factors that can transform their experience of everyday life (Shakespeare, 2014; Watson, 2020). Hence, because I experience these different factors in my life, I can often get passionate about my research and writing – passionate in giving the reader an understanding of the array of different factors that influence my own, and other disabled people’s, everyday experiences.

What can be seen with each of these reasons is that they are all influenced (in some way) by my emotions, body and the ability to personally connect with the phenomenon being studied (Richardson & St. Pierre, 2018). Indeed, when I write, it is sometimes not just the case of me having an idea and then deciding to write about it. It can also sometimes be the case that I have experienced a certain disability and leisure issue myself, and such a memory of it has encouraged me to write about it. Similar to what Smith (1999) illustrated when documenting his own experiences of living with clinical depression, the deep personal experiences and connections which we all have with a particular phenomenon, can sometimes be the push or pull which encourages us to think, talk and write about it in a different way. Therefore, when thinking back on my experiences so far being a disability and leisure researcher, who has a disability himself, not only have I learnt that I can feel what I write, but also my writing and thinking can be influenced by how I have experienced disability and leisure previously. Thus, encouraging me to write, think and even read about it in different ways.

Conclusion and Recommendations

The main purpose of this research note has been to reinforce the importance of a sociological understanding between our emotions and the overarching leisure experience, but from a somewhat different perspective – that of a researcher using their own experiences to help inform the broader understanding of leisure. Writing about disability and leisure with a disability has (and still continues to) come with its opportunities, challenges, exciting moments and tough moments. However, it has been through telling my own story of doing disability and leisure research with a disability that I have demonstrated that when understanding the sociology between leisure and people’s emotions, it is also important to recognise how using our own experiences can influence how we as researchers understand leisure.

Drawing upon our personal experiences to help us examine leisure is not necessarily a bad thing and, as it has been explained elsewhere, researchers’ personal accounts of leisure can be useful tools to help deepen and broaden the meaning of leisure (Johnson, 2009). Accordingly, I hope that I have given people an insight into the opportunities and challenges that can come with the territory of drawing on one’s own experiences to understand a particular phenomenon. I hope that I have inspired others to try and draw on their own experiences of leisure to help the overall understanding of leisure. However, it is also important to say that how I have used my experiences will not always be the best way for someone else.

People have different reasons for sharing their stories, and different reasons for experiencing the world in a certain way. Consequently, Sparkes (2020) adds that there can be no set criteria on how to do a self-reflexive study. All researchers’ reflections are relative to their research topic (Sparkes, 2020). Similarly, it was (and still is) my ability to acknowledge why my personal experiences were different to my participants, which enabled me to use my own personal experiences in my research, whilst, at the same time, not marginalising the voices of other disabled people. This was a skill only really developed over time – firstly, through having private conversations with myself about why I have had the experiences, and then, having those same conversations with close colleagues, friends and family. Therefore, for me, the best way for others to start a self-reflexive study, is by spending time getting to know your own personal experiences, and why you have had those experiences. Thus, giving yourself time to process your thoughts and feelings. Such a process of accepting what you feel, will then allow you to feel more confident in listening, understanding and accepting the differences of other people’s experiences.

Acknowledgements

I want to thank Dr Shirley Gray and the anonymous reviewers for their thoughtful and helpful comments on the earlier drafts of this research note.

Disclosure statement

No potential conflict of interest was reported by the author.

Additional information

Notes on contributors

Graham A. Condie

Graham A. Condie is a PhD Student at the University of Edinburgh in the UK, where he is exploring the influence of sport on the identities and wellbeing of individuals with Cerebral Palsy. His research interests are in disability, the experience of having a medical condition and how leisure and recreation can empower people and improve their well-being (in particular, those with medical conditions). He is also interested in disability sport, the meaning of different leisure experiences and Therapeutic Recreation.