Examensarbete 15 hp
Travelling with a mobility impairment
Exploring the relationship between travelling,
agency, and identity
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Travelling with a mobility impairment: exploring the
relationship between travelling, agency, and identity
In tourism studies, people with a disability are often portrayed as rather passive. However, there is more to their story. There are many tourists travelling with a physical impairment and they have found ways to do so. The purpose of this study is to explore travelling with a mobility impairment, and what this means for agency and identity. More specifically the study focuses on three research questions. 1. What do tourists with a mobility impairment find important when travelling?
2. What are the travel experiences of tourists with a mobility impairment?
3. How does travelling relate to agency and identity for tourists with a mobility impairment?
A qualitative study method has been used for answering the research questions, and twelve semi-structured interviews have been conducted. The study found that travelling can be seen as the background in which agency plays out, and provides opportunities for the creation of new identity narratives. Tourists find themselves in situations they have never been in before, and come across new challenges. Moreover, people with a mobility impairment pointed out many different identities. It depends on the context whether the individual would identify with their impairment and to what extent.
Tryckt av: Visby 20 008
Writing this thesis has been quite a journey for me. I was really excited to start the thesis trajectory. The topic lies close to my heart and I am very interested in other people’s stories, especially when they involve travelling. In the study my passion for tourism comes together with the ambition of making this a better world for everyone. More awareness has to be raised on the topic of diversity and inclusion, and we need to listen better to each other. The thesis is an attempt and step towards the realization of this aim.
I really want to thank the informants of this research for so bravely telling their story. I am really happy you wanted to share your experiences with me, and I very much enjoyed the conversations I had with you. It are all truly inspiring stories. I appreciate your honesty and openness, without you this thesis would not have been possible.
Moreover, I would like to thank Birgit Pauksztat, my subject reader from Uppsala University. Thank you for listening to me, asking critical questions, making me reflect on the research process, and for your enthusiasm on the topic. I appreciate all the support you gave me throughout the thesis trajectory, it really helped me to move forward.
I also wish to thank all the participants of my previous project ‘Visby without Barriers’, in particular Funkisam, the association for people with a disability on Gotland, Sweden. Members of this association have inspired me to keep working on the topic, and your positive attitude sets an example for many.
Lastly, a special thanks to my friends and family. You have always supported me in every step I take. Thank you for listening to me, giving me advice, and lifting me up when needed. It has been an amazing journey.
Before you lies the end result of the master ‘Sustainable Destination Development, Entrepreneurship for Destination Development’. I hope you enjoy reading it!
Table of Content
1. Introduction ... 4
1.1 Purpose of the study ... 5
1.2 Structure of the thesis ... 5
2. Literature review ... 5
2.1 Disability ... 5
2.2 Three disability models ... 6
2.2.1 Medical model ... 6
2.2.2 Social model ... 6
2.2.3 Social adapted model ... 7
2.3 Identity ... 7
2.4 Agency ... 8
2.5 Tourist ... 9
2.6 Context – travelling with a mobility impairment ... 9
2.6.1 Stages of becoming travel active ... 9
2.6.2 Barriers for travelling with a disability ... 9
2.6.3 Coping strategies ... 10
2.7 Travelling, Identity & Agency ... 10
3. Methodology ... 11
3.1 Sampling ... 12
3.2 Semi-structured interviews ... 12
3.3 Analysing the data ... 13
3.4 Ethics ... 14
4. Results ... 14
4.1 Important while travelling ... 14
4.2 Ways of preparing ... 15
4.3 Challenges ... 16
4.3.1 Accessibility challenges ... 16
4.3.2 Travelling with assistance ... 18
4.3.3 Interaction challenges ... 19
4.3.4 Other challenges ... 21
4.4 Feelings ... 22
4.5 Ways of dealing with challenges ... 24
4.7 Attitude / mind-set ... 26
4.8 Meaning of travelling ... 27
4.9 Identity ... 28
5. Analysis ... 29
5.1 Challenging, but worth it ... 30
5.2 Interrelatedness of the different themes ... 31
5.3 Identity construction ... 33
5.4 Different roles ... 34
6. Conclusions ... 36
6.1 Limitations & Future research ... 37
6.2 Practical recommendations ... 38
References ... 40
Appendix I: List of interviewees ... 42
Appendix II: Interview guide ... 43
Freedom is very important to me; to be able to make my own decisions and not feel limited. Therefore, I am interested in agency. Travelling brings me a lot of joy, and provides me with new energy. Travelling gives me a new perspective on the world, and encourages me to belief in myself and my capabilities. It provides the chance to connect with people all over the world, and to reflect on myself and my position. I am very interested in other cultures, belief systems, and ways of living, and always try to understand where these ideas come from and why people behave in a certain way. My personal experiences regarding tourism are reflected in important findings of tourism studies.
Studies have shown many advantages for tourists, such as: rest and recovery from work, broadening horizons, opportunities for learning and intercultural communication, personal as well as social development, and the gain of both physical as well as mental health improvements (McCabe & Diekmann 2015). Yet, for people with a physical impairment it can be challenging to participate in tourism. When there are too many barriers, tourism might have the opposite effect. It can create feelings of exclusion and a lack of autonomy (Smith 1987). “Not only do barriers to participation limit perception of freedom for disabled tourists, but specific barriers may further restrict the tourist's feelings of personal control and competence” (Smith 1987, p. 385).
In tourism studies, people with a disability are often portrayed as rather passive; they seem to be victims of the current tourism industry (Blichfeldt & Nicolaisen 2011). However, there is more to their story. There are many tourists travelling with a physical impairment and they have found ways to do so. This study focuses on the perspectives of people with a mobility impairment and their levels of agency in relation to identity construction. Why do they travel, what challenges do they come across, how do they overcome these challenges and how does that make them feel about themselves?
The study focuses on tourists with a physical impairment, specifically on people travelling in a wheelchair. There is a lot of literature on travelling with mobility disabilities, but despite the quantity of studies, tourists with a mobility impairment are often still portrayed as passive figures in the existing literature, and their voices are hardly heard. Studies also indicate that even though we know about issues tourists with a physical impairment come across, problems regarding accessibility, transport, and discrimination still exist (Yates 2007).
The relevance of this study is twofold. On the one hand, tourism studies have shown a relation between identity construction and tourism: “Leisure offers us an opportunity to experience something different or challenging, or simply pleasurable. However, it also provides the chance for a person to change their relation to themselves” (Fullagar & Owler 1998, p. 449). This relationship has to be further explored in the context of travelling with a mobility impairment. On the other hand, there is the need to create a better understanding of the wants and needs of tourists with a mobility impairment, so the tourism sector can better address these people and offer them the experiences they are looking for. There is a huge market potential here.
1.1 Purpose of the study
The purpose of the study is to explore travelling with a mobility impairment, and what this means for agency and identity. More specifically the study will focus on three research questions.
1. What do tourists with a mobility impairment find important when travelling? 2. What are the travel experiences of tourists with a mobility impairment? 3. How does travelling relate to agency and identity for tourists with a mobility
The study contributes to the existing tourism and disability literature, by focusing on the connection between travelling, agency and identity construction.
1.2 Structure of the thesis
The thesis will first provide a literature review, to give an overview of the studies done in this field. It will explain the important concepts relevant for understanding the study findings. After that it will go into the methodology of the study; semi-structured interviews have been conducted to answer the research questions. Moreover, the thesis provides an overview of the results that came out of the study. After that, the analysis is presented with the results linked to theory. The thesis will end with a conclusion, which gives an answer to the research questions, goes into the limitations of the study, discusses opportunities for future research, and comes up with practical recommendations for actors working in the tourism sector.
2. Literature review
The concept ‘disability’ is an umbrella term which covers a variety of impairments, activity limitations, and participatory restrictions. To define disability, I will follow the statement of Marks (1997, p. 85-86) who argues that: “Rather than seeing disability as a clear-cut, fixed condition, it is more accurate to see disability as existing along a continuum with blurred and changing boundaries both between disabled and able-bodied people and with those categorized as disabled.” Disabilities have to be viewed in their social context (Anastasiou & Kauffman 2013). Disabilities are characterized by a discrepancy between the individual’s performance and expectations or demands of the social group to which the individual belongs.
According to Anastasiou & Kauffman (2013) any conceptualization of disability is value-laden. Disabilities are embedded in a specific socio-political context and part of a system of social relations. However, it is important to note that disabilities are not only defined by their social context, biology also plays its part. There is an interactive relationship between biology and society. Social and individual explanations of disabilities should be regarded as co-determinants of the development of people with disabilities, and not as mutually exclusive (Anastasiou & Kauffman 2013).
2.2 Three disability models
Different ways of studying disability can be found in the disability literature. There are three central models, and each of them comes up with a different definition and perspective on ‘disability’. I will describe the different models, their main characteristics, how they view disability, and the role of agency. These three models are explained because “the way in which disability is understood is important because the language people use to describe individuals with disabilities influences their expectations and interactions with them” (Haegele & Hodge 2016, p. 193).
2.2.1 Medical model
The medical model looks at disability as the outcome of physiological impairment due to damage or a disease process. The view comes from the medical field and takes on a biological perspective: disability is conceptualized as a biological outcome (Haegele & Hodge 2016; Marks 1997). The model puts emphasis on the individual and their limitations, and makes no connection to the environment. The medical model sees the individual’s body as source of the problem, and therefore also searches for the solution by focusing on the individual.
The model comes with a strong sense of normalization. The body of a disabled person deviates from what is labelled as ‘normal’ in society, and therefore needs to be fixed. The medical model identifies people with disabilities as heavily reliant on medical professionals as gatekeepers who have access to resources and benefits (Haegele & Hodge 2016). Medical staff creates categorizations based on the individuals’ bodily function, without taking into consideration the values of individuals with a disability themselves. “Labels and categories can then lead individuals with disabilities to feel as though they have limited options” (Haegele & Hodge 2016, p. 196).
According to this model, the agency of the individual is disregarded. It puts the emphasis on the dependency of an individual, who is relying on the care of others (Goodley 1997). This view invites others to pity people with impairments, and feel sorry for them (Llewellyn & Hogan 2000). “In the medical model, the disability becomes the defining characteristic of individuals with disabilities, which shapes the beliefs that individuals who are typically functioning have toward them” (Haegele & Hodge 2016, p 195).
2.2.2 Social model
In the social model a distinction is made between impairment and disability.
According to the social model there is no impairment, only disability. The social model argues that people with a disability are oppressed by societal views of normality (Marks 1997). Disability is seen as a social construct and is according to this model imposed on people with impairments. The model points to society as the cause of disability. The prejudices that society has towards people with an impairment, are more disabling than the impairment itself, according to this model. “Society discriminates against people with disabilities through architectural design, policy, and basic assumptions about what a normal body looks like and how it functions” (Garland-Thomson & Bailey 2010, p. 11).
This leads to a rejection of the idea that disability is a personal tragedy (Goodley 1997). The barriers to full participation are not intrinsic in nature, but rather a result of the social environment. The political aim of the social model is for people with a disability to step out of their passive role given by society, and to take up a more active role as self-advocate. “The focus is shifted away from a focus on what people cannot do to what people can do (Goodley 1997, p. 373).” The model thus encourages self-empowerment and self-advocacy.
A critique on the social model is that by separating impairment from disability, the model exceeds the lived experiences of individuals with disabilities (Haegele & Hodge 2016). The impairment is an essential part of their lives. Impairment as well as disability shape the experiences together. Another point of critique is that the model does not take into account the differences between individuals with disabilities. The social model ignores the intersectionality of people’s identity (Haegele & Hodge 2016).
2.2.3 Social adapted model
The social adapted model is a new model that builds upon the social model, but incorporates elements of the medical model (Disabled World 2019). The model recognizes that “disability is neither the sole product of the biological nor societal condition” (Anastasiou & Kauffman 2013, p. 452). The social adapted model acknowledges that impairments are significant, but views that the social limitations imposed on people with a disability greatly exceed the discomfort of the impairment itself. The social and environmental context causes more problems. The advantage of this model is that it does not concentrate on individuals’ limitations, but takes account of peoples’ capabilities and potential (Disabled World 2019).
I will use the social adapted model for looking at disability in this study, because it combines the limitations caused by the physical impairment with limitations imposed on people by society. It is important to recognize both aspects, as they together influence the experiences of people.
The concept of identity represents the fundamental link between an individual and the socio-cultural context (van Meijl 2010). “Identities develop from past experiences, personality traits, abilities, physical appearance, values, goals, and social roles” (Dunn & Burcow 2013, p. 149). I will elaborate on the different characteristics of identity that are important for understanding the concept. Van Meijl (2010) argues that identities are never singular, but always multiply constructed in different contexts. Depending on the situation somebody finds him/herself in, a certain identity will be at the forefront. Identification is context dependent, and therefore situational. The elements that together form someone’s identity exist in readiness to be expressed depending on external social factors that invite their emergence (Josselson & Harway 2012). Identification changes, depending on the interaction that is going on at a certain moment.
Moreover, identification can be seen as a dynamic process. What you experience now becomes a part of who you are. These identification roles are connected to each other, since they are all part of the individual (van Meijl 2010). Furthermore, the way you see yourself, does not always match the way others look at you. This is what makes it so difficult according to Hall (1996), since we have to identify ourselves as part of a certain group, in a particular role or position, but others also need to recognize our membership and place.
Identity is socially constructed, but at the same time deeply embodied by people (Dunn & Burcow 2013). According to Watson (2002, p.510) “We act through our bodies upon our world and it is through our bodies that we experience and comprehend the world.” It is important to recognize this embodied experience of people, and to understand how the body influences someone’s identity. The article on ‘Leisure, work and disability coping’ (2014) found that people with a mobility impairment indicated they had many different identities. It was largely dependent on the setting or the role they were in at any given time, to what degree they would identify as a person with a disability.
The authors of the article (Cook & Shinew 2014) identified three different themes in how the study participants talked about their identity roles. The first is called: not the typical handicapped person. It is characterized by someone’s eager to dissociate themselves from common societal perceptions of what it means to be disabled. The second identity role evolves around being an example. Even though the impairment is just one facet of someone’s identity, their informants reported that the disability impacts how they relate to other people. Moreover, it also influences the way they felt they contribute to society. The last identity theme they categorized as other identities, such as partner, friend, parent, colleague, woman, or worker. Relational roles are important to people’s perception of themselves (Cook & Shinew 2014). 2.4 Agency
The agency-structure debate within social sciences helps to unravel power structures. Within this debate agency refers to the capacity of an agent to act in the world, and structure is the framework in which the individual acts. Individuals are part of this structure, which means that there are always limited options available, and that norms and values in society shape decision-making processes. The structure-agency debate encompasses individuals, their will and desires versus social structures, institutions, hierarchy and bureaucracy (Fleming & Spicer 2014).
Agency has been viewed in the literature from different perspectives. In general, it has been connected to different aspects, such as the free will, resistance, self-autonomy, and the human potential for creativity and the possibility for transformation (Gergana 2010). In this study agency is operationalized as: feelings of being in charge, having the freedom to make your own decisions, being independent, and having self-autonomy. It is not solely individual, but can be seen as a product of the interactions between one’s desires, discourse, and socio-cultural environment (Gergana 2010).
This study follows the definition of UNWTO (2020) on tourism:
“Tourism is a social, cultural and economic phenomenon which entails the movement of people to countries or places outside their usual environment for personal or business/professional purposes. These people are called visitors (which may be either tourists or excursionists; residents or non-residents) and tourism has to do with their activities, some of which involve expenditure.”
Tourism can thus be seen as an (leisure) activity, which involves travelling. A tourist is a visitor who stays overnight or goes on a one-day excursion (UNWTO 2020). It is important to be aware of the diversity between tourists. The study focuses on tourists with a mobility impairment, and treats these tourists as individuals with their own story. To define disabled tourists as one segment would be a simplification of reality and can even be called artificial homogenising (Blichfeldt & Nicolaisen 2011).
2.6 Context – travelling with a mobility impairment
2.6.1 Stages of becoming travel active
You et al. (2004) studied the process of becoming travel active for people with a disability. The participants of their research identified five stages on their path. The first stage evolves around acceptance and reintegration and is called the personal phase. The second stage is about reconnection, the exploration for future travelling is hereby central. After that a person goes into the analysis stage, where a search for information takes place. Then it is time for the actual journey, this is called the phase of compensation and compromise. Lastly, the stage of experimentation and reflection, by experiencing different tastes of travelling (You et al. 2004).
The participants of the study expressed that the nature of the journey is highly personal. Most of them needed to go through each step of the process chronologically, while some others went through them simultaneously. A few experiences showed that certain stages had to be revised. “The findings of the study clearly suggest that the process of becoming travel active for those with disabilities is more than just removing physical barriers. For many, tourism represents a metaphor of recovery” (You et al. 2004, p.958).
2.6.2 Barriers for travelling with a disability
psychological dependency. Environmental barriers are the externally imposed limitations a tourist needs to deal with, these include: attitude, architecture, ecology, transport, law and regulations. The last category encompasses the interactive barriers. These barriers result from the reciprocal interaction between the tourist and the immediate milieu. Communication difficulties are an important aspect of this category.
2.6.3 Coping strategies
The study of McKercher & Darcy (2017) identifies four different kinds of issues tourists with a disability face and how they can be dealt with. The first category are issues faced by all tourists, these could be intrapersonal, interpersonal or structural constraints. The second type of issues is specific for all people with disabilities, such as ignorance, attitude, the trustworthiness of information, and issues related to the tourism industry itself, or internal barriers. The third type consists of issues unique to specific disabilities. For tourist with mobility disability this is often related to architecture and design, such as steps, uneven ground surfaced, the need for ramps, toilets, bed heights, showers, and a range of other obstacles. The last type are moderating factors of ‘impairment effects’, the authors of the article mean with this the individual impairment effects on people within a group may affect their ability to travel (McKercher & Darcy 2017).
The article of Wästerfors (2020) shows different ways of dealing with everyday difficulties when living with a disability. The participants of the study narrate how they ask and use others for assistance. This strategy suggests a picture of unwanted dependency, but after having taken a closer look, the authors argue that this is a false image as the performance is navigated by the participant. To overcome inaccessibility, it can be crucial to have somebody else with you. The article mentions ‘trusted personal assistants’ which are often the gateway to independence for people with a physical disability. Mostly the lines between formal and informal others are blurry in practice (Wästerfors 2020).
Another strategy is to make deals with people in places you visit regularly. This can prevent the feeling of humiliation or shame. You do not need to ask for help, because these people already know you and are familiar with your situation. A different strategy the authors mention is to go along with methods that are not necessarily designed for people with disabilities. “‘Piggybacking’ refers to ‘skilfully taking advantage of crossers-in-progress who have already forced competing traffic to make way” (Wästerfors 2020, p. 12). Using this strategy can give a sense of inclusion. The last way of dealing with inaccessibility is to make your voice heard and find companions to together take political action.
2.7 Travelling, Identity & Agency
The notion of identity could provide answers to questions raised within tourism studies, such as: travel motivations, tourism practices, choice of destination, and the politics of tourism (Desforges 2000). Within tourism studies there has been a shift from tourism consumption as a way for the alienated tourist to find a sense of self, to identity as something that is actively constructed through tourism practices. The concept of identity thus changed from a static discoverable self, to identity as being constructed and fluid (Desforges 2000). “Who we are, is intimately related to where we are, where we have been or where we are going to” (Barnes 2000, p.198).
stories is a central part of conveying the meanings of travel” (Desforges 2000, p. 939). The stories told about travel experiences can be seen as a way to communicate identity to others.
“Stories as the vehicles of imagination enable us to move towards a different experience of self. Just as significantly, leisure experiences offer opportunities to imagine our desires and thus recreate our sense of who we are. The stories we tell about our last holiday or the weekly game of sport whether watched or played, provide the narrative link between our past and future self, as well as between ourselves and others. In telling such stories we have the opportunity of producing a sense of ourselves as a unique person which can create a feeling of positive difference. Through exploring our choices, likes and dislikes in leisure we are also exploring our desires as an active subject. We learn to project ourselves in certain directions in order to reproduce a narrative based around these desires. In this way our motivation to live fully is increased, becoming the enactment of a more positive identity.” (Fullagar & Owler 1998, p.446)
We do not only tell stories about ourselves, but we eventually become our stories (Fullagar & Owler 1998). Tourism experiences provide opportunities for reflection, which allows for the development of a sense of self-identity (Eichhorn et al. 2013). Tourism enables people to come in contact with others that are similar or different from them. This will help to recognize and learn about their own position in the world. Tourism also challenges the pre-made ideas of one’s identity by providing a new context in which these assumptions might be challenged.
Identity is created in relation to the self and to others, but is also deeply affected by the structures we find ourselves in. These structures provide normative guidelines on how to live our lives. At the same time, we do have some agency in the sense that we can decide whether to accept or reject those guidelines in the creation of self-identity. Moreover, Eichhorn et al. (2013, p. 582) argue that “there is a need to account for multiple identities, integrating a level of self-reflexivity and agency, with agency being constructed by rejecting identities others try to impose on disabled people.” Furthermore, it is important to recognize the variety of disability identity, there should not be focused on one collective identity (Eichhorn et al. 2013).
Blichfeldt & Nicolaisen (2011, p.87) argue that “to go on vacation also relates to overcoming self-doubt, redefining oneself and building self-confidence. Hence, vacations seem to be the means to the end of being an ‘able’ person.” The study participants of the study of Blichfeldt & Nicolaisen (2011, p. 91) argue it is important for disabled people to go on holiday, “not only because it offers a means of escape from their everyday life roles as ‘objects of care’, but also because it is a means to the ends of them becoming (or being) self-reliant, independent, confident and ‘able’ people.”
There is more insight needed into the effects of travelling on the individual. The tourism sector can play a bigger part in accommodating people with mobility impairments, when there is a better understanding of their travel behaviour (Kastenholz et al. 2015). By investigating the relationship between travelling, identity, and agency this study contributes to this cause.
I have interviewed twelve tourists who travel with a wheelchair. The list of interviewees can be found in appendix I. The selection criteria were age and impairment. I wanted to talk to people over 18, hence no children. Children have a different perspective and usually travel with their caregivers. Moreover, it is harder to interview people under 18, since they cannot give permission to be interviewed, but their parents need to be involved. The other criteria was that the interviewee travels with a wheelchair or scooter. I did this to make sure that the interviewees had at least one characteristic in common and because I suspected they would come across similar challenges regarding accessibility. Of course, there are still many differences between individuals. I will elaborate on these differences further in the thesis.
It is an international group of interviewees from western countries. I conducted one interview with a couple. Only the man travelled in a scooter, but they always travel together and gave complementary answers throughout the interview. I chose not to interview caretakers, because this would give a different perspective. I also decided not to interview people who have been temporality in a wheelchair. They would talk retrospective about their experiences, which would also give a different story.
3.2 Semi-structured interviews
I have decided to conduct structured interviews to answer my research questions. A semi-structured interview entails that the interview is semi-structured around a particular topic, but without fixed questions (Bryman 2016). As a qualitative interviewer, I am interested in the personal experiences and views of the interviewee.
I chose to conduct semi-structured interviews because it gives the interviewee the space to tell their own story, but also provides me with answers around important themes. Those themes might not be touched upon when doing open interviews. The nature of the interview provides opportunities to dig deeper (Bryman 2016). It gives a chance to ask follow up questions, and to encourage the interviewee to elaborate further or give more details. It is important to be flexible and let the interviewee talk about what they want to share. On the other hand, I needed to make sure the conversation was kept around a certain topic, and would not go too far away from that (Aull Davies 2008).
I made use of an interview guide, which can be found in appendix II. The interview guide starts with introducing the research again to the research participants. I have not mentioned the terms ‘agency’ or ‘identity’, but focused on the travel experiences, challenges and coping mechanisms. By starting the conversation with talking about agency and identity I would already push my participants into a certain direction, which can make them not use their own words anymore, and might have the consequence that I miss out on other interesting data. After introducing the study, I asked some background information, to understand the context of the travel stories the interviewees tell me.
interview. I always ended by asking if the interviewees have something else they would like to share with me, just to make sure they have told me all the important stories related to this topic.
The questions are thus asked in a chronological order, but I adapted this order accordingly to what suited the interview best. Sometimes an interviewee already answered multiple questions at once, or it made more sense to go into detail about another question. Moreover, the situational context of an interview is important. In this case, interviews have been conducted online. The reason for this is that a face-to-face interview is not possible in these times of Corona. Furthermore, I decided to not only focus on Gotland residents, but to target the wider international disabled travel community. This because I would get a wider range of experiences, and the language barrier would be smaller. The interviewees were thus in a different place than I was, and therefore online interviews were necessary.
I found the interviewees through Facebook Groups for travellers with a physical impairment. The interviews have been held through skype, zoom or messenger call, depending on the preference of the interviewee. The first interview was conducted on Tuesday April 7th, and the last interview on Monday May 4th. The interviews took half an hour to one and a half hour. The interviews are mainly conducted in English, and two interviewees have been held in Dutch. I chose for the language the interviewee would be the most comfortable in, and a language we both understand well. As can be recognized in the list of interviewees, many of them had English as their native language.
3.3 Analysing the data
During the interviews people talked about their travelling experiences. I recorded these interviews. Recording the interviews enabled me to focus completely on the interviewee and their story. I could make less notes than when I would not record the interviews, which meant it was easier to follow the story of the interviewee, encourage them to elaborate further and come up with follow-up questions. I transcribed the interviews afterwards often in the same week as the interviews were conducted (Ritchie & Lewis 2003). By transcribing the interviews so shortly after having conducted the interview, I could reflect on the interview; the content and my interviews skills. I used these reflections and findings to improve the next interview I conducted.
In the analysis I looked for how the interviewees talked about themselves, how they talked about their environment, and the relation between these two. When analysing the interviews, I focused on the three study questions I have formulated. I identified different challenges interviewees described, and also paid attention to how the interviewees dealt with these challenges. Did they actively seek for help, was there somebody that offered to assist them, did they go around the obstacle, did it make them give up? Moreover, I wanted to know how important the situation was for them and how it made them feel. These were valuable cues I searched for in the interview transcriptions.
With the research questions in mind, I coded the data. This means that I started labelling the findings (Ritchie & Lewis 2003). I went through all the interviews and named the different themes in a descriptive manner. At the same time, I was already grouping these codes into categories. I wrote all the themes on a whiteboard, which created an overview. The process of coding helped me to see patterns in the collected data and enabled me to compare the findings. I could search for similarities and differences in the interview data. The list of codes can be found in appendix III.
Moreover, I decided on what would be the most logical way to build up the story. I chose to illustrate sections of my thesis with quotes from the interviews. This gives the reader a sense of being there. It provides a lively image of the situation and strengthens the message of the thesis. 3.4 Ethics
There are four main ethical principles in social research: no harm to participants, informed consent, respect privacy, and integrity (Bryman 2016). I have dealt with these ethical principles by informing the participants beforehand about what they can expect from the study. I did this by elaborating on the purpose of the study, and by providing the interviewees with additional information, so they know what the gathered data is used for and how I handle the interview data.
Participation in the study was voluntarily. Everything the participants told me is confidential. I informed the participants the interviews are part of a master thesis trajectory of Uppsala University in ‘sustainable destination development’. I have also told them the thesis will be published on the university website, which means it is publicly accessible, but that I make sure the study findings are anonymized, so it is not possible to trace back who exactly said what. I have done this by giving the interviewees a different name in my thesis. Moreover, I informed them that they were allowed to stop the interview if they would feel uncomfortable and that they could skip a question when they did not want to answer it. Before I started the interviews, I asked whether it was okay to record the interview.
Moreover, I informed the interviewees that only I have access to the original data file, but that I might show certain parts to my supervisor. Also then, no original names are visible. The data is safely kept on the computer, which is password protected. I keep the data until the master thesis is accepted. I made sure interviewees were well informed about the research by sending them the information beforehand, and by mentioning it before we started the formal interview. I also gave the interviewees space to ask questions before we started, to make sure everything was clear to them.
This part of the thesis will go in depth on the information gathered through semi-structured interviews. It will describe what people with a mobility impairment find important while travelling and what they expect of their trip, it elaborates on the challenges they come across, how they deal with these challenges, and their attitudes and feelings. Moreover, the thesis will go in depth about what it means to people with a mobility impairment to be able to travel and what their happiest travel moments have in common with each other. For more detailed information on the different themes, see appendix III.
4.1 Important while travelling
It is good to recognize what interviewees find important when they are travelling. What would they like to experience and what are their needs during travelling? These aspects eventually shape their actual experiences. What is interesting to mention is that all interviewees start with deciding on where they want to go, by how interesting the destination is to them. After that they will look into other aspects.
can be quite uncomfortable: sitting still for a long time in a small seat, not being able to easily go to the bathroom, having to wait a lot. Furthermore, the accommodation should be comfortable, and have easy access. So, wheelchair-users can have a good rest and enjoy their days at the destination.
Safety is also highly valued by the people I spoke to. Most of the interviewees have experienced scary moments while travelling. Bas for example has an experience where he needed to get off the plane in Mallorca, and four small Spanish men came to lift him up in his chair. It was just a chair with four legs, and a back. The chair did not have arm rests, so he could only lean back. He sat about 20 centimetres above the staircase, when these men lifted him up and took him down the stairs. He could easily have flipped over and fall. Even though he had requested assistance before his flight, he all the sudden found himself in a dangerous situation. Stef had a similar experience: when he landed in Tunisia a staff member of the airport suggested to take him down the stairs on his back. He also had asked for assistance in advance, but this is not always well communicated between different actors and people have a different idea about what this assistance entails.
4.2 Ways of preparing
All the interviewees said that planning ahead is key. According to Nora “you have to plan every step you take”. The interviewees often start organizing their trip a couple of months up front. An important step of this planning process is to check whether hotels and touristic attractions are really accessible or not. Interviewees do this for example by emailing and calling hotels beforehand, and by asking a lot of specific questions. Sandra talks about how she learned to ask the right questions.
And then you can also e-mail with people that are renting out the apartment and ask why would this work, can you please measure the lift? That has been an issue in Southern Europe, that the lifts are very small. So, then we started to recognize that we have to ask a specific way to measure the lift. Because once we went to Paris, the lifts were so tiny, you had to sort of like use the wheelchair, you had to put it in sideways, which is not very easy because the wheelchair has the wheels, so we had to sort of like tilt it, so it took a lot of time to get in and out of the apartment. So that you learn when you travel for a while.
Other ways of checking whether your destination is accessible are looking up the hotel on google street view, talk to people who have already been there, search for travel blogs, and to ask questions in travel Facebook groups.
Moreover, making a packing list can come in handy. The interviewees say that you learn over the years what is important to take with you and what you can leave at home. Something else that is important to do is to talk beforehand with your travel companion about what you are capable of and what not, and how you would handle a situation where you get too tired or when something is not accessible for you. Having communicated that well before going on a trip, saves uncomfortable discussions.
Because we got there, and the front entrance was completely inaccessible. It had twenty flight stairs to get up to the main entrance, and into the reception area. And I was tired from travelling and we were soaking wet … But then we got there, there was nothing to guide us to an accessible entrance, and the entrance was completely inaccessible. I ended up having to climb the stairs, and I was dead tired already. I got in there, and reception was just like: yeah, I cannot help you. Eventually the manager got off the phone, and he just like took over, and said ‘hey I help you with the luggage, and we do have an elevator’. And it turned out to be a service elevator at the back of the building. So, you had to go through the garbage room. And we managed to get the elevator, and it was the service elevator that they had, that they used and that was what they had as an accessible entrance, and then you got up there, and the room, we couldn’t even get through the doorway into our room, with our chairs. There was no space for two wheelchairs in that room, even though she had specifically asked for a wheelchair friendly room. And there were doors, which were fire doors, which obviously you need to have, but they were all closed, and there was no way of opening them if you came in a wheelchair. There was no electric opener or anything.
People with a mobility impairment come across different challenges while travelling. The most significant challenges have to do with accessibility. Other challenges can be categorized as trouble with assistance, issues when interacting with people, and other.
Angela summarizes the challenges she comes across while travelling:
One guy tried to lift my chair holding the wheels, so I started tipping forward and almost fell face first down in the asphalt. So that is one of the typical experiences. And sometimes they manage to destroy my mobility aids, like my wheelchair, my cane, crutches, walker, yeah things like that. And then some treat me like a kid, like I am not an adult. And I cannot speak for myself. Which is kind of irritating, and annoying. 4.3.1 Accessibility challenges
Accessibility challenges are the most salient when travelling in a wheelchair or scooter. According to Fleur: “Largely the world is absolutely shit at making cities accessible.” Accessibility challenges for example have to do with how a building is built and used. These challenges include: narrow doorways, stairs, steps, malfunctioning elevators/no elevator/blocked elevator, and little to no space to move around. Evert is not surprised anymore when something turns out not to be accessible:
Then there are also a lot of challenges regarding surfaces in cities. For example: cobble stones, hills, height differences, holes in the ground, construction work, smoothness of the pavement, uneven surfaces, and steepness. No cut-outs on sidewalks is another challenge, because you cannot safely cross the street. These factors make it hard to be in a wheelchair and having to find your way in a new city.
Moreover, inaccessible toilets are another challenge wheelchair-users have to deal with. Door handles for example can be inconvenient in use, when you have to push the door and at the same time back up your wheelchair to make space. Toilets can also be too small, or without levers, that makes it difficult to make use of by yourself. Furthermore, transportation is often a challenge when sitting in a wheelchair or scooter. People have to deal with inaccessible buses, escalators, the underground which is crowded and has a big step between the platform and the metro, inaccessible taxi services, boats, trains and airplanes.
Another challenge evolves around accommodations that are inaccessible, even though they promote themselves as being accessible. All the interviewees told stories about surprises they had when arriving at a hotel and suddenly there would be a step in front of the entrance, or they could not use the facilities of the hotel, they had trouble with the elevator; inaccessibility issues with accommodations. Carola said that able-bodied staff members often do not see accessibility in the same way as she does. Ron argues that access is different for everyone. Moreover, the couple I interviewed made an interesting distinction between handicap accessible and handicap friendly:
Couple - M: Cause you got to remember, handicap accessible and handicap friendly are two different things. You can say handicap accessible, but that could be for very limited type of handicap people. And handicap friendly is when you can get to the sinks, to the towels, and how you shower.
Couple - W: He finds a lot of times when he goes into a bathroom, you know he is in a seated position, he can get to the sink, but the soap dispenser is up there. So, he cannot reach up to get to the soap dispenser. And then the towels are ten feet away behind you. So, that is not friendly.
Couple - M: But they make it to where you could roll into a bathroom, but you have a very very difficult time using all the facilities in the bathroom.
Also, accessibility attempts can be only half done, which still does not make it accessible. Fleur talks about her experience where somebody had put a ramp on top of the steps, “but there was a big gap between the ramp and the street, so it is still not possible to use it with a wheelchair.” Another important aspect is an accessible swimming pool. Stef talked to me about his experience in Croatia in a relatively new hotel. He had a beautiful handicapped room, and there was also a handicapped swimming pool. It turned out, this swimming pool was in the souterrain, at -1, and was only accessible by stairs. Stef asked at the reception how he could get down. His partner was able to walk and went to take a look. She saw “a dressing room for disabled people, a shower and a toilet, and a swimming pool with a ramp and levers, everything was there. But you could not get there.” At the reception somebody eventually told him that the hotel was quite new and when they were building it, they ran out of money, so they saved that by not building an elevator to -1. Even when Stef asked if they had other options for him to get there or whether they would build that elevator in the future, the staff said they were not thinking about changing this.
facilities that people in wheelchairs can make use of, it can feel like a prison.” Wheelchair-users then are not able to enjoy themselves outside of the room.
As previously mentioned, all of the interviewees have experienced that people tell you something is completely accessible, but when they get there it is not. According to Leonie “people just say anything to get you as customer.” Ron explained that “no information is often better than bad information”, and he illustrated this with a story about his vacation in Berlin.
I had an Airbnb in Berlin once and they said yes, it is completely accessible, it is absolutely fine. And I arrived and there was a big step in the front, and I said this is not accessible, you told me it was. ‘Oh, that is okay, we have got a guy coming tomorrow and he is going to build a ramp and by tomorrow morning you will be fine.’ And so they basically gave me the keys and said uhm you know, that you would have to stay in the apartment, because I could not get out, until this guy turns up tomorrow morning and build a ramp, in order for you to get out in the morning.
A consequence of these accessibility challenges is that wheelchair-users often do not get the same experiences as other tourists. Angela for example wanted to go to the Eiffel Tower when she was in Paris. When she got there, it turned out that wheelchair-users are only allowed to go to the second floor, and they cannot go to the top. This ruined her idea of taking great pictures of Paris by night. Moreover, the couple I interviewed shared their story about going on a tour when on vacation.
So, we had a tour that stopped in Stonehenge, and my cousins were travelling with us and they were on the big bus with all the other tourists, and we had a small van just for us and my sister. But they had a tour guide on their bus that talked about Stonehenge and history and all that, and we basically had a driver. You know, he did not tell the history of Stonehenge, yet we paid the same amount of money as they did, and we did not get the same experience. So, we do feel a lot of the time excluded in those kinds of things. And because they, even the cruise ships do not have a lot of handicap accessible tours.
4.3.2 Travelling with assistance
Travelling with assistance knows some challenges as well. According to Evert “you need to be able to accept that you have become part of a process,” of the system the airport created for wheelchair-users, for example. “It is important just to go along with it.” Fleur says about this, that “you need to get over yourself and ask for the help you need. It is not easy to get to that place where you feel comfortable enough to do so. It is a process you have to go through, but it gets easier when you admit to yourself that you need this help and that those people are there for you. It is not demanding to ask for something you need, but it is your right to do so.” Both Fleur and Evert also emphasize the advantages of having assistance. Fleur says “it is the closest you get to VIP treatment: you are being taken care of, do not have to wait in line, and are able to go in front.” Evert gives the following example of his experience with flying with assistance:
and I have a stop-over, then I always know who is the one who will catch the connecting flight. That is me. Because I never have to wait. So there always comes this big strong guy, and he pushes you, in a wheelchair from the airport, to another gate. And I mean I can fall asleep in that chair and I still know I am easily on time. So, then I wave at all the people that are still in line at customs, and then I know maybe I will see you soon, but at least I will be up in the air, I am sure of that.
Not everyone has positive experiences with assistance at airports. Nora says that “the people who work there often forget that everyone has individual needs. They can act like they are smarter than you, just because they work there, even though you have travelled more often and know your needs best.” Also, Tom has negative experiences at airports, he highlights the differences between policies of different airlines.
And then trying to deal with batteries and stuff [batteries for the electrical wheelchair/scooter], each company has different rules regarding which batteries they will and will not allow on. And the problem is that most of the people doing the ticket counter, they do not know any of the regulations. So, you have to print it out all beforehand, from their own website, to show them their own rules, because they do not actually know them, and they just pull these other ones out of the ass. I have had it a couple of times where they are like ‘oh no you cannot have that battery’, and I am like no thankfully I printed out your own rules that say I can have this one.
And then, a little bit more communication between airlines would be a lot better. Between their own regulations, and even the terminal themselves, we have had issues since I have been injured. Uhm where we get out and we are at gate 86, and they tell us okay your next flight is at gate 2, so we get all the way out there, which is freaking a million miles down, we are there, and then 20 minutes before the flight they are oh well now you are like at gate 85. It has happened twice that we have had to go all the way back. And I don’t know about where you are, but for example the one where this happened at was Toronto airport, that place is huge. We are talking 2 kilometres maybe between gates from A to B where we are going. And it is a long roll.
4.3.3 Interaction challenges
People have different ways of reacting to wheelchair-users, and although most interviewees said that their experiences are largely positive, they also all have had negative experiences, which can have a really big impact. According to Angela “people can be overly helpful for example.” Fleur also talked about this and explained it can feel invasive when that happens. She gave the example of a woman stopping her in the middle of the street to pick up her quilt that was running over the ground a little bit, and tucked it in.
Ron clarifies that “when you are in a wheelchair, one of the things that you really dislike is when somebody comes up and just starts pushing you without asking.” Bas as well, sees that people not always know how to help and “just start lifting up your wheelchair, without asking what you need help with.” It can feel very unsafe:
They just take the wheelchair and help me with the stairs or whatever it is, and then instead of listening to what I say, ‘I need help with the balance in the chair’. They just flip it over and drive me down the stairs and then afterwards say ‘oh that was a tough one’. Yeah, because you did wrong, the only thing you had to do was hold the balance in the chair. I could go down the stairs, if you just hold the chairs balance so I do not flip over and get out of the chair. But it is communication and learning for everyone.
Moreover, multiple interviewees talked about people addressing their caretaker instead of them, and then try to find out your needs through this other person. “People can think that you also have a mental illness, instead of just a physical limitation.” “This feels like you are not being listened to, like you do not have a voice, and like you are being treated as a kid.” Sandra said:
Being underestimated is something I do not like when they expect because I am wheelchair bounded that I am not able to speak for myself. Usually they start looking at my assistant, but when they hear that I speak freely and that I am in charge and in control, they start talking with me instead.
Both Nora as well as Tom have experienced that people do not always believe their disability. Tom said: “and then you got people that aren’t the friendliest, and they don’t take it kindly if they see you get out of the wheelchair even to go to the washroom, they automatically think ‘oh you are just faking it to get on the plane faster’.” Furthermore, multiple interviewees spoke about getting dirty looks from people, or being stared at. Angela said “it sometimes feels like I am a travelling circus, it feels like a freakshow sometimes.” For example, when she travelled to Beijing people secretly tried to take pictures of her, or even just sat on her lap without asking.
Moreover, because wheelchair-users are lower to the ground than other people, others often do not see them or pay attention. This can be very frustrating, because it has the consequence that people bump into you, suddenly stop right in front of you, rush in front of you, or do not see you when you want to ask them something. This can also cause conflicts and misunderstandings.
Couple – M: And when you are in a chair travelling, on a sidewalk or something, people do not see you. I can roll up to a counter, any kind of counter and I am on eye level with the counter. And the girl will be right behind the counter, and they will never see me. They do not see you. They are looking ahead; they are not looking down. People do not look down.
Couple - W: And sometimes in that situation, like when I am with him, and he is going to pay and the clerk will talk to me, and I am like he is right there.
4.3.4 Other challenges
Other challenges people with a mobility impairment come across include: having limited choice of options where to go, how to get there, and what to do at the destination. Their options are also more expensive, because of their accessibility needs. Moreover, it is harder to find sustainable solutions. Accessibility is of main importance for them, but some of the interviewees talked about sustainability as an important value they hold. It is hard to find sustainable travel options. Trains for example, are not always accessible or only partially accessible, and it is difficult to find that out beforehand. Most people I spoke to were reluctant to take the train for that reason, only one interviewee said she exclusively travels by train because of environmental reasons.
There are some practical challenges that the interviewees come across, apart from accessibility. Something that was frequently mentioned was the loss or destruction of their mobility aids while travelling, often when they travel by plane. Another challenge is the availability of accessible taxi service when needed. “When you have to go to the airport early in the morning to be in time for your flight, it can be hard to find a good service that will bring you and isn’t insanely expensive.” Furthermore, travel insurance can be an obstacle, it is difficult to insure a wheelchair. Moreover, “the travel regulations regarding wheelchair batteries can be a hassle at the airport as well as that the regulations regarding medicines in different countries can become an obstacle.” Something else that is hard to find out beforehand is “whether there will be a safe place to store or charge your wheelchair at the destination.”
Moreover, interviewees told they have been left or forgotten by staff while travelling. The story of Bas is taken here as illustration:
We were going home from Mallorca, so we were at the airport about two hours before we should leave and we were guided in a room to sit and wait. The other persons who should go on the same flight sat in another room, and they filled up the plane and the plane started and we still sat in that room and ‘oh wait how, they forgot us.’ So, we got someone of the personnel, and ‘wow have you not got on board.’ ‘No, no-one had told us anything.’ So, they had to stop the plane, and then they carried us on board and it was full of people and it was very hot. And everyone was just like ‘oh those disabled persons never get on time.’ But it was not our problem, it was the staff. But that are also things that can go wrong, because they are treating you specially. And not go with the others. And some miss in the communication, and there we sat and almost missed the plane home.
In this fragment he talks about being treated differently; having to sit in a separate room and being set apart from the rest. There is often a different procedure for people in a wheelchair, and this can feel exclusionary. Sometimes people are very unaccommodating. Then there are also challenges that are disability specific. For example, the airplane seats can be very uncomfortable to sit still in for a long time. Also, the energy level during travelling, is something most of the interviewees need to be aware of. It can have the effect that they are not able to leave the hotel room for a couple of days because they are too tired or in too much pain.
I will just give an example, but imagine you want to go into the swimming pool, with a lift, well then there is a lifeguard, that is the case in Tenerife, and he is the only person who has a key to that lift. So, then you constantly have to ask him for help. I would say just give me the key or something like that, and then I can decide for myself, but now I have to wait. And when he is in a conversation or he went to the bathroom, yeah then I sometimes really have to wait until he gets back, and that is frustrating. And what is also frustrating, is that when you are dependent on that kind of person, then he works, I don´t know, from 9 in the morning till 5 in the afternoon, and then it is over. So, then I cannot go for a swim anymore. While other guests, they can just swim at eight o’clock if they want to, because the evening sun is very nice. But yeah, I will have to do with a shower to cool down, at best. And then go lay in the sun for another hour. And yes, that is what I find annoying, because I want to be able to live equally, and I find that in that moment, I experience kind of a disadvantage, that I am behind. And that, I really do not like. That is something very personal.
Stef also talks about another challenge when travelling which is that “you do not have your regular support group around you. At home you have for example somebody who comes and helps you every morning to get out of bed and to get dressed. Those kinds of services are hardly offered when going on a holiday.” Furthermore, “you can miss the adaptations you have made for yourself at home, when you are on a holiday everything is more standardized.”
Bas talks about another challenge, which is internal and personal. He states that your own mind is the biggest obstacle. It is important to keep challenging yourself in order to have the ‘yes I can mentality’ and keep going.
And the biggest problem is your own head. What you think you can do or cannot do. Everything goes one way or another, if you just go there and try it. So I would say, the problem to go by chair is a little bit more, how should I say, you have to plan a little bit more, but the other side when you have done that a few times, you do not even think about it, you just do that.
During the interviews people talked about different feelings they had while coming across challenges when travelling. These feelings influence the way they deal with challenges and how they look at themselves. Therefore, I would like to elaborate on them more.
Sometimes, the interviewees felt misunderstood by their environment. Nora for example, was eighteen when she took her first trip on her own, and could not get off the airplane without assistance. In Lisbon she was the only one still on the plane, and tried to explain to the staff members that she could not walk. Unfortunately, they did not understand her, and eventually called the police. It was a really scary moment for her. Luckily the police spoke better English and helped her get out of the plane. Miscomprehension can cause arguments, and multiple interviewees have found themselves in conflicts because of it.
The challenges people come across while travelling can be very frustrating and upsetting. Tom described:
Another feeling interviewees can have is that they are inconveniencing others when they have to ask for help or take longer with getting to a certain place. It can feel like they are a burden to others. I will use a fragment of the interview with Carola to illustrate this:
One thing, that was a coach between Oxford and London, and you don´t have to book in advance for assistance, but basically they can push the button and raise the seats forwards to make the wheelchair space, so you could just queue up as normal, but obviously it does take the driver a bit more time than to load in someone who does not have a chair on. And I remember once, the driver was doing the pushing, and putting the straps in, and someone came up to him and asked him to hurry up. And he turned over and said: can you just have some compassion and patience while I get this lady in. But it made me feel that I was, you know, not allowed to be there, that I was inconveniencing people with my existence.
Many of the interviewees talked about feelings of exclusion. Ron explains, when asked if he ever feels excluded because he is in a wheelchair:
Yes, yeah. And this is not necessarily due to travel, but sometimes if you go to a restaurant, or go to a particular place then some people are a bit ignorant, in the way that they treat people in wheelchairs or people with mobility issues. They might be dismissive or they might think that they have a mental problem, or that they have other types of problems communicating. So there is a lot of, and sometimes there is a fear of getting it wrong, because everybody wants to be helpful and polite and not to be politically incorrect, you know do I call you an invalid, or are you disabled, or are you, you know what do I call you, all these sorts of things. I think we just need to realise that it is one person dealing with another person, you don’t have to, as long as you are willing to help, and as long as your ethics and your moral compass is set the right way then you know, it doesn’t matter what you call me or how you address me, it is like let’s work it out, or if you can find me a table in the restaurant and you have to move a few things around, then be kind and move a few things around, maybe you have to ask somebody to change tables, you know, do you want to do that or do you not want to do that.
Stef also mentioned he feels limited, when he was asked whether he sometimes feels excluded from touristic activities.