The Experience of Traveling for Young People with a Hearing Impairment – Voices of Invisible Disabled

Umeå University Department of Geography Magister thesis Spring 2020 Author: Lina Nilsson Supervisor: Kerstin Westin

The experience of traveling for young people with a hearing impairment – Voices of invisible disabled

Lina Nilsson

1 Abstract

Tourism has become a major part of today's society and has been seen as a human privilege. The expansion of tourism makes travel more accessible to more people. Still, people with a disability can face difficulties when traveling for the purpose of tourism. Information becomes important to accomplish accessible tourism for everyone, but the problem in various tourism disciplines occurs with the lack of knowledge about people with disabilities. Tourism has different disciplines. Transportation is one of the basics of making tourism accessible around the world. Transportation has a major impact on tourism development but also in tourist experiences. If the transportation mode is not accessible, it can be a negative experience for people with a disability and can affect the entire journey and their willingness to attempt further trips. Disability is a broad definition and it is important to understand that different disabilities require different needs and that everyone is individual. This study analyzes how hearing loss affects travelers and the understanding of; (1) What may be needed to assist people with hearing impairments when traveling; (2) How does traveling affect people with hearing impairment when they do not have accessibility? The method is a qualitative method with in-depth interviews because this study wants to understand and reflect participants’ experiences when traveling with a hearing impairment.

Keywords: Tourism, disability, hearing impairment, transport, traveling modes

2 ACKNOWLEDGEMENTS

The end of this semester has come and a magister thesis has been established. This thesis is close to my heart, a topic that should be raised more and highlight the voices of invisible disabled. I am in huge thankfulness to the participants that wanted to share their experiences in contexts to their hearing loss. In my opinion, it is considered very courageous, as it can be seen as a personal references to themselves.

Thank you all, it was so much fun talking to you all!

I would also like to thank my supervisor Kerstin Westin who has been a safety through the process. Her dedication made it more pleasanter to write, develop and establish this thesis!

Thank you Kerstin for sharing your knowledge!

My rock through the whole process, my beloved Sandra. A person who through the process had such a belief in me and mine thesis.

Thank you Sandra!

Last but not least, I would also like to thank the Unga hörselskadade organization for their help in finding participants. My support from my friends and family, and my loving American family and friend in USA, thank you!

3 Index 1.Introduction 5 1.1 Purpose and research questions 6 1.2 Definitions 7 2. Background chapter 8 2.1 Disability 8 2.2 Invisible disability 8 2.3 Hearing impairment 9 2.4 Transport in context to tourism 9 3. Previous studies 10 3.1 Tourism and accessibility 10 3.2 Transport and accessibility 12 3.3 Information and communication for people with a disability 12 3.4 Information and hearing impaired 13 4. Method chapter 14 4.1 Methodology 14 4.3 Method 14 4.4 Sample 15 4.5 Data collections 16 4.6 Ethics 16 4.7 Analysis 18 4.7.1 Analyze process 18 4.7.1.1 Phase 1- Get to know the material 18 4.7.1.2 Phase 2 - Codes 19 4.7.1.3 Phase 3 - Themes 19 4.7.1.4 Phases 4 and 5 - Review themes 19 5. Result 20 5.1 Information 20 5.2 Feelings about traveling 21 5.3 Influence of other travelers 22 5.4 Technical development 23 6. Discussion 24 6.1 What can be perceived as a problem when traveling with a hearing impairment? 24 6.2 How dose traveling affect people with hearing impairment when they do not have accessibility? 25 6.3 Final discussion and conclusion 27 6.4 Further research 27 7. Summary 28 8. Reference 30

1.Introduction

Tourism is about temporary mobility, how people are moving from another place to another for different reasons. Travelers have different purposes for their journey, for example, business, education, day trips, second home, and leisure travel. Leisure traveling has been more common for people to do during their free time (Hall 2005) and can be in context with vacations (Medlik 2003). Over the years, tourism has become a growing sector and become more global. Today, it is easier to travel and more people have the opportunity to travel. Globalization has made the world more accessible to people around the world (Hall 2005).

Through the perspective of one with a disability, accessibility is when everyone has the same right to be able to participate in tourist activities based on their own abilities. (Domínguez., et al. 2015). According to the UN (United Nations) regulations, everyone has the same right to an active outdoor life where the tourism sector is included (UN Convention, the Rights of Persons with Disabilities 2020). Tourism is complex to understand because there are many different perspectives within the concept (Hall 2005). One of the most important perspectives is transportation, which has played a major role in the development of tourism. Transportation creates an easier link between the tourist and the destination (Lohmann & Pearce 2012). According to the World Tourism Organization (UNWTO 2016), is it important that the whole process of traveling is accessible for people with a disability. That means if the transport is not accessible for tourists with a disability it can affect the desire to travel, even if a destination meets the needs for a tourist with a disability

In Sweden, the functional goal in the transportation policy is to create accessibility for everyone, where accessibility for people with a disability is a significant part (Government Offices 2020).

“The transport system is designed to be useful for people with disabilities” (Government Bill 2008/09: 93, 2008, p.18).

People with disabilities have limitations in physical or mental ability but desire to be independent in different environments and chosen activities (Nationalencyklopedin n.d). Hearing impairment is a disability, and that implies one has a debilitated capacity to perceive sounds (Hörsellinjen n.d). Hearing impairment is individual; with different degrees of hearing loss and can, therefore, have different accessibility needs. The overall concept for hearing loss is that the communication can be more challenging. It is more difficult to perceive sounds and noisy environments, which have a major impact on communication (Hörsellinjen n.d). Today, there are over 1.5 million people in Sweden who have difficulty hearing. Also, hearing impairment is considered a growing public health problem as the statistics of hearing impairments is expected to increase all different ages (Hörsellinjen n.d).

Based on social relevance, this study will highlight people with a hearing loss and their right to tourism for international travel, with a focus on young people with hearing impairment and their perceptions in the travel industry. In the literature discussing accessibility with tourism, it indicates a homogeneous understanding of people with a disability (Figueiredo 2012). That can give rise to misunderstandings because each disability is unique (Figueiredo 2012). This study adds to the literature in tourism and accessibility by analyzing a specific disability group, focusing on the hearing impaired and their experiences in the traveling industry. This study also gives voice to this invisible disability in tourism with the purpose of delimitation of young hearing impaired people in Sweden. Invisible disabilities are defined as a disability that cannot be visually seen, such as hearing loss (Lingsom 2008).

The study is limited to young people with hearing impairment in order to get an understanding of their experiences. Congenital hearing loss is a common cause of hearing impairment among young people and it is a lifelong journey. That can contribute to different references and perspectives in context to their hearing loss versus people who lost their hearing due to old age. Also, statistics from hearing impaired and hearing aid testing in Sweden from the National Hearing Association (2017) indicated that it’s more common for older aged people to have a hearing impairment in Sweden. According to Hörsellinjen (n.d), society tends to define a hearing impairment with older people, neglecting the younger generation in the research and conclusions.

1.1 Purpose and research questions

The purpose of this study is to highlight hearing impaired young peoples’ experiences when they travel internationally with different transportation modes.

Based on that purpose, this study wants to answer the following questions;

● What can be perceived as a problem when traveling with a hearing impairment? ● How does traveling affect people with hearing impairment when they do not have accessibility?

1.2 Definitions

Hearing impairment - This study is defining hard of hearing as congenital hearing damage that is often genetic (Hörsellinjen n.d).

Tourism - In this study tourism is defined as leisure traveling with a focus on international traveling.

Transportation - This study is not focusing on a specific transportation because it is usually a combination of different methods to get to the destination (Thompson & Schofield 2007).

Traveling – Traveling is a process, and this study is focusing on different travel modes in the process of traveling.

Accessibility – In this study, the term accessibility is focusing on people with a disability.

7 2. Background chapter This background chapter fulfills a function of allowing the reader to access background facts about different terms that will arise through the study, such as Disability, invisible disability, hearing impairment and transport in context to tourism.

2.1 Disability

About 15% of the world's population has some form of disability and need different aids, for example, a wheelchair or hearing aid (World Health Organization (WHO) n.d). Disability means that there is a limitation within the physical or mental ability in order to function independently (Ne n.d). People with a disability can also encounter social barriers, meaning society has not adapted to the needs of the individual (WHO) n.d).

According to WHO (2011), almost everyone will have some form of disability in their lifetime Today, politicians work more actively to include people with a disability in society than before.

Historically, professionals identified a disability from a strictly medical perspective; however, the landscape is changing to include it as a social factor. This indicates that society has not yet adapted for all individuals to independently travel. Environmental factors also have an important impact on people with a disability. If such environments are not adaptable to accommodate individuals, obstacles are created. Changes to create an accessible environment are required, among other things, by a political effort or technological development (WHO 2011).

2.2 Invisible disability

According to Lingsom (2008), it is possible to divide disability into visible and invisible. An invisible disability is defined as a condition that is not immediately apparent to others. Unfamiliarity with disabilities can lead to misunderstanding of invisible issues. What is considered to be an invisible handicap are, among other things, mild learning difficulties, speech difficulties, asthma, epilepsy and hearing loss. Both visible and invisible disabilities can have different perspectives from society. For example, some can have preconceived assumptions about visible disabilities that give rise to more acute reactions. For invisible disabilities, it's more challenging to show the struggles from a societal position, adding to the issues of accommodation. It has also been shown that people with an invisible disability tend to hide their challenges. Such factors can include, according to Lingsom (2008);

o They do not want to attract unnecessary attention o Fear of someone judging them o Fear of being excluded

8 2.3 Hearing impairment

According to WHO, there are 466 million people in the world who have hearing loss, which is equivalent to 6.1% of the world's population (World Health Organization (WHO) n.d).

There are different types of hearing loss, which also means different concepts of sound and levels of decibel and pitch concept. A hearing aid can help people with a hearing impairment by amplifying sounds they have difficulty hearing. However, even with a hearing aid, many can still miss audio frequencies in the spoken language, or other sounds from different environments (Adams & Rohring 2004).

A hearing loss is defined as decibel loss on a mild to profound scale, which includes a difficulty in perceiving sound. People with no hearing impairment can hear various sounds and categorize them. For a person with hearing loss, this becomes more difficult. (Hörselllinjen n.d). The difference between a deaf and hearing impaired person is based on decibel hearing loss. From a medical perspective, a person is considered deaf with a large- scale hearing loss, as opposed to a hearing impaired person who shows mild to moderate loss on the auditory scale (Adams & Rohring 2004).

2.4 Transport in context to tourism

Transportation in context to tourism has an important function (Thompson & Schofield (2007), Khadaroo., & Seetanah, 2007, Henderson 2008, Borodako., & Rudnicki 2014, Géza. & Lóránt 2010). Tourism is dependent on various services that help to manage a product, and the infrastructure of transportation is one of them (Borodako & Rudnicki 2014). Transportation in tourism is considered a destination means (Thompson & Schofield 2007). Evolution of transportation has created opportunities for more people to travel at the same time, longer, faster, more conveniently and more affordable. This evolution has contributed to a national network, which includes air transportation. This has played an important role in the mobility of longer distances (Borodako & Rudnicki 2014). Transportation benefits both tourists’ mobility and the economic development of their destinations (Henderson 2008). This increase in accessibility with transportation allows for tourism to flourish under all populations (Thompson & Schofield 2007).

9 3. Previous studies This chapter will explain relevant concepts that have recurred in previous research in context to the purpose of the study.

3.1 Tourism and accessibility

Accessibility in tourism can provide various levels of services to allow tourists to access different options. Examples of accessibility in tourism with accommodations may include ways to order food and navigate transportation. This creates a basis for a tourist destination through its infrastructure (Apollo & Rettinger 2019). Competition in infrastructure is important because provisions of accessibility help create a strategy to include all groups into their locations. (Porto & Ciaschi 2018).

Tourism can contribute to quality of life and improve the self-esteem for people with a disability (Altinay et al., 2016; Domínguez., 2019). Tourism has become part of a modern lifestyle (Figueiredo, 2012), giving more people the opportunity to travel with accommodations (Hall 2005). It is an individual's right to be able to enjoy leisure time (UN Convention, the Rights of Persons with Disabilities 2020), but the opportunity of accessibility can be different for people with a disability in comparison to people without a disability. The difficulties for people with a disability that may arise during a trip can contribute to helplessness, and become a negative and possibly dangerous experience (Figueiredo, 2012).

According to Porto & Ciaschi (2018) accessibility for people with a disability should not be seen as a privilege, it should be seen as a right for everyone.

Accessible tourism for people with disabilities is when the environment, products and services are accessible to everyone (WHO 2016). It also requires that accessible tourism is safe and meets the needs for a tourist with a disability in transportation, accommodations and experiences (Domínguez et al., 2015). The issue with making tourism accessible for tourists with a disability is the challenge to put accessibility in the context with tourism and in its various systems, because accessibility needs are individual (Buhalis & Darcy 2010). Disabled people are a varied target group, which means that there are different approaches to what's considered accessible and adapted to their needs and behavior (Figueiredo, 2012).

According to Figueiredo (2012) it is important to understand the patterns of people with disabilities as they travel. If there is a clear understanding of those patterns, more accessible tourism can be successfully designed. It is critical to know their needs and expectations about traveling, as well as their limitations and requirements.

10 According to Figueiredo (2012), there can be three different areas that are potentially problematic during a trip for people with a disability, and how it can be resolved;

o Environment - Positive attitudes in the social environment, accessible architectural and ecological designs.

o Communication - Provide correct information and break down communication barriers.

o Understanding – Service members are educated and sensitive to individuals’ needs and conditions.

A benefit for recurrent tourism by providing accessibility for one group can work with other target groups, such as those with temporary disabilities. For example, aging people, pregnant women, families with children, those who have illnesses and their caregivers can be included in the temporarily disabled groups. This creates a greater demand for accessible tourism (Domínguez et al., 2015; Huh & Singh., 2007; Cloquet et al., 2018; Ho & Peng 2017; Altinay et al., 2016; Domínguez et al., 2019; Dickson et al., 2017; Yau et al., 2004). There are economical benefits to producing and investing in accessibility for destination development, and one key factor is marketing towards large groups (Huh & Singh (2007); Dickson et al., 2017; Yau et al., 2004; Domínguez et al. 2019). Another economical benefit is that many tourists with disabilities are traveling with friends and family and are typically not alone (Huh., & Singh., 2007).

In previous research, there is an outline in the lack of knowledge of tourism and accessibility for people with disabilities, which is considered an issue (Poria et al., 2010; Bizjak et al., 2011; Domínguez et al., 2019; Burnett & Baker 2001; Woodside & Etzel., 1980; Yau et al., 2004; Poria et al., 2011). According to Figueiredo (2012), it is difficult for tourist providers to perceive accessibility if they lack understanding of their needs. This can contribute to a concern that tourists with a disability can experience when traveling (Poria el al., 2010). Knowledge, service and attitude have indicated to be an important part for people with disabilities, (Bizjak et al, 2011). For example, tourists who are blind or in a wheelchair could have a negative experience that ultimately impacts their desire for travel (Poria et al., 2011). To create a safe and accessible journey, trust in the service providers can be key factors that are based on knowledge of their needs (Yau et al. 2004).

Lack of knowledge of accessibility exists in many locations, including transportation, which has an important function in the experiences of traveling (Rudnicki 2014).

11 3.2 Transport and accessibility

Travel has grown into a vast tourism industry, where transportation is part of the experience (Hanefors & Mossberg 2007). Quality and accessibility are important aspects to be considered (Khadaroo. & Seetanah, 2007). The accessibility of transportation can intensify the competitive advantages of destinations (Géza & Lóránt 2010). It happens that a tourist may choose a destination based on how accessible the transportation is. Their previous experiences, perceptions and the quality of transportation may also influence their destination choice (Henderson 2008). A transportation system has several components that must be provided. In addition to their physical characteristics, there is also a need for the quality of service, staff attitude and information (Thompson & Schofield 2007).

Transportation is an essential base for people with a disability to live independently (CRPD n.d). It is critical for people with disabilities to have confidence in the transportation system that their experience will be positive and their needs will be met. A negative transportation experience can impact the desire of further traveling (Da Silva., Et al. 2017). Limitations differ. People with a disability are not a homogeneous group, so they have different needs (Figueiredo 2012). People with a disability can have preferences based on their disability and limitation in the choice of traveling mode (Da Silva., Et al. 2017).

3.3 Information and communication for people with a disability

According to CRPD (2008), information and communication are important for people with a disability to have an independent life. It is important to provide information through various supports in public facilities and always have information updated. This information can be provided by technology communication, internet and sign language. Based on UNWTO (2016), it is central to think about what is important and how to mediate the information. Examples of advice from UNTWO (2016);

o Inform about the services or travelers where to find information about the infrastructure.

o The information is logical, uses all types of communication channels and is able to be understood by everyone.

o The information is accurate. Poor information and incorrect information can have consequences in the safety and comfort of tourists.

UNWTO (2016) believes that information is the key function in the process of traveling for tourists with a disability. The information must be reliable and tourists with a disability need to have access to information based on how different destinations are adapted. It is important for people with disabilities to know how to access travel information since it can be a stressful time. (Yau al., 2004).

12 Information has a significant role for people with disabilities throughout their journey (Kołodziejczak 2019). According to Kołodziejczak 2019; Cloquet et al. 2018; Nazli (2018) some of the important functions of information are being reliable and being updated.

3.4 Information and hearing impaired

Communication contributes to cohesion where individuals can share values and experiences based on a common language. It is easier for people with the same language to communicate. If people are unable to understand the language they can be frustrated and feel excluded (Kožuh et al., 2016).

Individuals are meant to communicate with one another. The process of communication often requires them to listen to sounds and try to find a meaning. A person with a hearing impairment can find it hard to perceive sounds, especially in noisy environments (Hörsellinjen n.d).

A good sound environment creates good conditions for a person with a hearing impairment to perceive and understand the information. A bad sound environment affects everyone but especially those with a hearing loss. For them it can become more difficult to perceive the spoken language and hard to understand and remember what has been said (Hörselllinjen n.d). A hearing loss is individual (Punsch et al., 2019). A person's hearing loss can vary on a scale from mild to moderate, affecting how they perceive sounds. Depending where a person falls on that scale will determine the intensity of their needs (Adams & Rohring 2004). Those varying levels can also affect a person's attitude and perceptions of their own hearing impairment. They also indicate that varying levels of hearing loss require different services from society (Punsch et al., 2019).

People with hearing loss rely heavily on facial expressions, attention getting techniques and the quality of voice to receive and understand information (Kožuh et al., 2016). Announcements over terminal speakers can be very difficult to understand. For the information to be correctly understood, the information must be presented visually. This can be through text or lip reading (Latzel & Paluch 2018). In public places, for example, terminals and stations, it is necessary for people with hearing impaired to receive information through text. It is also important to constantly update information about departures, changes and any unforeseen occasions. The technology development of the online-world provides important tools for deaf and hearing impaired people to communicate more easily (Kožuh et al., 2016). Good supports for regular updates are apps for smartphones (Hörsellinjen n.d).

13 4. Method chapter This chapter will present the choice of method and how the study has proceeded to get the result. The chapter will also discuss ethical aspects and the role of the researcher.

4.1 Methodology

In order to have an understanding of travel experience for people with a hearing impairment, a qualitative method was considered most appropriate. This method is particularly useful in studying participants' reality and experiences. Qualitative methods offer an effective way of acquiring a deeper understanding of the interest in the participants' experiences and perspectives (Yeo et al., 2014). The main disadvantage of the experimental method is that a qualitative method focuses on the specific. A quantitative method could have produced a generalization and context of what it is like to travel with a hearing impairment (Agresti 2018). This study adapted qualitative analysis in order to gain insights into the participants experience and develop knowledge from the participants' social reality about traveling with a hearing impairment.

Perceptions of how this study develops knowledge are based on interpretivism, which means that knowledge is created by collaboration between the researcher and the participant. Interpretivism believes that the reality is affected in the process by the research, which means it is not possible to make a significant difference between values and facts and the research becomes more subjective (Ormston et al., 2014). The researcher in the study has a hearing impairment, and therefore it is more difficult to be completely objective in interpretations of the participants' experiences. Based on previous research, it is important to have knowledge and understanding of the disability to understand the issue (Darcy 2010). Therefore, a combined effort of the participants and the researcher can produce conclusions to this information. Although this study considers it relevant for the results not to be objective in interpretations, it is also important that the study reproduces the participants' social world to be as consistent as possible (Ormston et al., 2014). This study wants to provide a balance between objectivity and subjectivity. One of the bigger challenges for this study is finding a balance for the role of the researcher. There are both negative and positive aspects of the researcher having a hearing impairment. The role of the researcher will be discussed further during the description of this chapter.

4.3 Method

In order to gain a deeper and wider understanding of the participants who have hearing loss and their experiences of traveling, in-depth interviews as a data collection technique were considered most appropriate. An in-depth interview approach allowed for a deeper insight into the participants’ experiences. This method provides a practical approach to understanding the participants’ reality, social world and perspective on the subject (Yeo et al., 2014). Focus groups could also have been a viable alternative. The benefit of these focus groups is that a discussion about the topic could develop further and new perspectives (Finch et al., 2014).

14 This advantage of in-depth interviews gives all participants a chance to express what is important to them (Yeo et al., 2014). A group discussion, however, can make limitations in what the participants intend to share with the researcher (Finch et al., 2014).

4.4 Sample

Five participants were recruited for this study. Participants were selected based on a homogeneous sample, meaning the participants in this study were recruited having the same specific characteristics and subculture to carry out an understanding in the researcher's interest and assist to a more detailed understanding of the issue (Ritchie et al., 2014). In interest of the same subculture and characteristics, the participants were recruited from the Young Hearing Impaired organization in Sweden. This organization works for young people with hearing impairment rights (Young hearing impairment n.d). The organization sent out a request via email to participants between the ages of 20-30. The information letter informed the individuals about the purpose and the criteria to participate in the study. Eligibility criteria required individuals to have a congenital hearing impairment and be between the ages 20-30.

The reason this study requires participants with a congenital hearing impairment, is that younger people often have congenital hearing loss (Hörsellinjen n.d), and therefore lived their whole lives with it. They can have different perspectives with their hearing loss, compared to people who acquire it with old age. Also, this study intends to be the voice of those with invisible disabilities. According to Hörsellinjen (n.d), society tends to define a hearing impairment with older people and therefore younger with a disability are considered even more invisible.

The participants contacted the researcher via email or telephone to participate, and the study appropriated those who reported their interest. The sample for the study consists of five participants and can be considered a small sample. The study expected more participants, but it was able to procure 5 altogether. All participants were women between ages of 20 and 30. Two participants came from the same town, and the rest of them had different locations in Sweden. All participants have traveled abroad, most of them at least once a year. The study did not have requirements on how often they traveled abroad.

List of participants Gender Age Anonymous 1 Female 27 Anonymous 2 Female 27 Anonymous 3 Female 27 Anonymous 4 Female 26 Anonymous 5 Female 26 Table 1.This shows the participants in the thesis

15 4.5 Data collections

As mentioned, this study adapted in-depth interviewing as a technique for collecting the data. Having in-depth interviews provides the researcher the opportunity to ask follow-up questions that help provide a deeper meaning to their experiences (Yeo et al., 2014). Face-to-face interviews tend to be the most common and effective method to gather research. In these interviews the researcher can observe the comfort level of the interviewee by reading their body language (Yeo et al., 2014). Due to the current circumstances of the world, concerning the COVID-19 pandemic, it was not considered appropriate to meet the participants, but instead utilize a media platform, such as Zoom. The development of the technology has helped to provide alternative approaches for in-depth interviews through online (Yeo et al., 2014). For this study, Zoom was more effective because it provided an opportunity to easily adjust to the participants within the time frame. It also provided the opportunity to interview people around Sweden and obtains a greater geographical extent. The study chose to use video during the interview, which still provided the opportunity to see body language.

An advantage of using Zoom allowed the participants to choose an environment that meets their audiological needs. According to Latzel & Paluch (2018), an adapted sound environment is important in order to perceive sounds for people with hearing loss. The disadvantage of using Zoom is it can cause the participants to struggle with perceiving sounds. This study was sensitive to helping participants concur the sound obstacles in order for them to feel comfortable (Yeo et al., 2014). The advantage for this study is that the researcher has a hearing impairment and can more easily understand the situation, which can create a sense of comfort for the participants. According to Yeo et al., (2014), the result can be affected if the participants don’t feel comfortable during the interview.

The interviews’ platform had a maximum of one hour for each interview window, but it was noted that the interviews tended to last only 45 minutes. The interview was based on a topic guide (Appendix 1), with relatable topics but still allow for flexibility (Arthur et al., 2014). While the topic guide is based on previous research, this study also has an interest in unexpected questions and topics, because experiences can be unique (Figueiredo 2012). This study also wants an open dialogue so the participants can draw from their own story (Arthur et al., 2014).

4.6 Ethics

Ethics is an important role for this study for the confidentiality of the participants. The purpose of these ethics is to protect the participants, it is important for this study to clarify for the participants about their role and their prerogative (Webster et al., 2014). The ethical considerations and guidelines are based on The Swedish Research Council's research ethical principles (2017).

Examples of ethical considerations for the study;

● When inviting the participants, the purpose of the research was clearly explained ● Clearly explained that everything is voluntary ● Clearly explained that everyone is anonymous ● The participant can decide what they consider is appropriate to share ● Clearly explained that they can decide when to end the interview

This study intends to highlight that the participants are anonymous, because a disability can be a private condition for the participants. Also based on Lingsom (2008), this study indicates that people with an invisible disability do not want to emphasize their disability and their needs, partly because of fear of being judged. Therefore, this study was selective in how the participants were questioned during the interviews. According to Lingsom (2008) is it more common for people with an invisible disability to experience different reactions from their surroundings.

Prior to data collection, the participants received an explanation of the project and the commitment of the researcher to adapt to their needs. To assure consistency with the research, the participants were provided information about the topic and researchers’ definition of the terms. That makes it easier to understand the participants' perspectives on what is considered fair to emphasize in the interviews and what requirements that could be important (Webster et al., 2014). Prior to the interview all participants were informed that the researcher herself has an hearing impairment, that also is an advantage for this study. The researcher has an understanding and empathy for any problems or discussions that may arise during the interview. For example, that the researcher is enunciating carefully, repeating if needed and sitting in a quiet environment.

Based on previous research, it is important to understand that each disability is unique in order to understand the individual's needs (Figueiredo 2012). For example, a hearing impaired person has unique experiences, hearing in different scopes (Adams & Rohring 2004). Therefore, this study wants to elucidate the ethical aspects from their principle perspective and the theory of ethics. That means this study is based on each participant individually of what is considered morally right according to each participant's needs, there are no universal applications. The disadvantage of this theory is that moral insights are guided by the researcher's own perspective (Webster et al., 2014). However, since the researcher herself has a hearing impairment, it is implied that there is an acknowledgement in understanding the subject matter. According to Webster et al., (2014), it is important to be able to understand the participant's situation for the purpose of empathy.

17 4.7 Analysis

This study intends to reproduce the participants' experiences with a hearing impairment during traveling; therefore a thematic analysis was chosen to determine the results. A thematic analysis is useful in reproducing the participants' reality and applying the context to different variables that can be affected in society (Braun and Clarke 2006). To use an thematic analysis, the study has chosen different approaches based on the study's questions and purpose. In relation to this dataset, it will be focused on detailed accounts, because this is a shorter study with limited conclusions. It is therefore difficult to focus on the entire data set because it requires a rich, detailed description and reflection of the entire data set (Braun and Clarke 2006).

Outlines in thematic analysis can be identified in different ways. This study has some themes that were predetermined, based on previous research, but it is noted that other themes emerged through the study. Example of a predetermined theme is Information and out of this emerged Impact of other travelers. In this study, it is a balance of being objective and subjective, therefore is a semantic level of interpretation adapted. Semantic interpretation level means that the study will analyze and interpret what has been said, with the focus on what is clearly presented in the result (Braun and Clarke 2006).

Narrative analysis could also have been a viable alternative since the purpose of the study is to reproduce experiences. A narrative analysis produces a personal and individual story, in this case, how hearing affects when traveling (Riessman 2008). However, a thematic analysis was more functional because this study partly wants to discover themes around experiences in context to previous studies.

4.7.1 Analyze process

These are the four steps that were followed when the data was analyzed.

4.7.1.1 Phase 1- Get to know the material

To begin this process, it’s important to have an insight into the data by carefully reading through the data with an analytical perspective for any codes contained in the transcribed text (Braun and Clarke 2006). This material is analyzed based on previous research on the subject, but is also flexible for new themes.

18 4.7.1.2 Phase 2 - Codes

Codes summarize the data based on the interview and give an overview of the analysis. (Braun and Clarke 2006). Codes for this study are based on what has been revealed in the interview. This study found individually codes for each participant and then compared them to find codes that were valid for all five participants.

Examples of codes that summarize all interviews is; stress, control, apps and updates.

4.7.1.3 Phase 3 - Themes

Once the codes were extracted, it was first necessary to find themes in the analysis. Themes are based on how different codes that can be combined (Braun and Clarke 2006). This study presented four different themes that summarize the results from all interviews.

Themes Codes Information Signs, text, information board Feelings about traveling Stress, early before departure, control Influence of other travelers Traveling with others, asking others, relax Technical development Mobile, apps, notices, updated

Table 2. This figure shows the different themes and what codes those imply for each theme.

4.7.1.4 Phases 4 and 5 - Review themes

Following correction for codes was reduced to different themes to certify there is a pattern and a clear distinction between the different themes. It’s also important to read through the data material again and make sure the themes and codes are complemented with the material (Braun and Clarke 2006). These themes will also be used in the results of the study.

Themes Explanations Information This theme came up when participants discussed what is important to them when traveling. Feelings about traveling This theme came up in discussions how it affected them when the information was not available in text.

Influence of other travelers This theme came up for example in discussions of having control over the trip Technical development This theme came up for example in discussions what can make them more independent and what can be developed

Table 3. This shows the explanations for the different themes that outcome.

19 5. Result

This study will present the results in the different themes that occurred during the analysis of the interviews. Four broad themes emerged from the analysis; Information, feelings about traveling, the influence of other travelers and technical development.

5.1 Information

The illustration from the interviews is that information in text is important for different traveling modes, before the departure and during the trip. In their accounts of the events surrounding information and transportation, it was a common view amongst interviewees that information in text was more important prior to departure when traveling by air than when travelling by train. It was the opposite when travelling by train or by bus. At that time it was more important to have information by text during the ride. One interviewee argued that traveling by air has no alternative stops so it is impossible to get off at the wrong place. All participants had a common opinion that information announced over the speakers at train stations was difficult to understand.

A variety of perspectives were expressed in the type of information that was important. Two interviewees argued that if the information didn’t affect their trip it was not important. In the interview, concerns were expressed about not being able to understand the important information, announced over the loudspeakers that could affect their trips. Two participants indicated their frustration when announcements were made. They were unable to determine if the information was important to their trip, therefore, making it hard to relax. In their accounts of the events surrounding oral information, all participants want information that is related to their travel available in some visual format. That preferred format being text.

"It's hard for me to keep up with what they're saying, I hear it's something, but don't know what". Anonymous 4

Symbols, information boards, apps, mobile phones and asking others turned out to be the most common ways of presenting information if the participants did not hear from the speakers. Apps proved to be of great importance to all participants to acquire information and visually through text. The types of apps varied, including the different airlines' apps, train apps and apps with maps. The apps created a more controlled situation that allowed for participants to easily understand the information without asking anyone or having to seek out an information board. Apps make it easier to be updated, gain control of the journey and be able to be independent. The analysis of the result indicated that independence was important to all the participants in varying degrees.

5.2 Feelings about traveling

This theme resulted in examples in discussions on how it affected the participants when the information was not available in text.

Stress, powerlessness and exhaustion were the three most common negative feelings that arose during the trips for participants if they were traveling alone. These feelings were generated when the information was unavailable, especially if any changes occurred and they did not have any control. Another reported problem was that all the participants found it difficult to relax when they traveled with different travel modes, as they always needed to be updated.

All the participants felt it stressful to travel alone, but opinions differed as to whether the level of stress affected them enough to lose the desire to travel abroad alone again. Some felt that stress didn’t affect them much when they were traveling, while others considered that stress generated anxiety. One respondent argued that stress didn’t affect the journey, it was more a challenge, while another described that stress could negatively affect the experience of the trip. A variety of perspectives were expressed about their desire of traveling abroad again, only one of the respondents indicated that it could affect the desire of traveling abroad again because of the stress.

"It was very stressful for me, I felt I had no control over the situation and then I become very uncertain." Anonymous 1

It was suggested that the participants often go to the information boards for updates, use phone apps and arrive early before the departure. Those were some of the different options of some control over their journey. The informants reported that it was important for them to arrive early before the departure in order to resolve any problems that may arise. Two participants reported they arrived early before departures in different travel modes to adjust for their inability to hear speaker announcements. This would allow an opportunity to find the resources for any changed information. Another participant described how important it was for her to be early at the gate because that helps her have some control when she was flying, to ensure she did not miss information. A common view among the participants was that everyone desired control when they were traveling, but that their need for different levels of control was indicative of their personalities.

“I’m prepared that I will miss the information when I travel, if I travel myself. Then I need control and routines. ” Anonymous 3

Further analysis shows that most of the participants agreed that the curiosity and the fun of traveling is more powerful than the stresses it can create during the trips.

5.3 Influence of other travelers

In accounts of the events surrounding their experience when traveling abroad, the theme of control over the trip was evident. The analysis of the result indicated that other travelers and the participants’ companions both play a major role in the travelers experience when traveling by air. These views came up mainly in relation to information that’s not available in text. In all cases, the respondents reported that they relied on their companions to listen for them. That decreased the stress when they didn’t receive the information. Only one of the respondents indicated she travels alone because that is her preference, while others considered it to be more fun traveling with a companion. All participants agreed that they can travel alone but it is more fun traveling with a companion. An interesting problem that was discovered was that the hearing companion also struggled to understand the announcements coming from the speakers and would appreciate announcements via text.

"I have never traveled by air alone. I've always had someone that can hear, and then it becomes that persons responsible for hearing" Anonymous 2

The participants reported that they have no expectations that staff or society should have knowledge about what a hearing loss implies. They did not have any particular opinions about their knowledge or attitude, and did not have any concerns about it. There was a sense that knowledge or attitude from staff did not affect their experiences. One interviewee argued that it was the social adjustment around a hearing loss that could be better. Another informant indicated that asking other travelers was acceptable if she did not understand the information. In all cases, the participants indicated that they are comfortable asking other travelers if they can’t perceive the information. One concern expressed regarding knowledge about hearing impairment was how other travelers responded when participants asked for clarification of an announcement. Two participants explained that they have a hearing impairment before asking the question, because they do not want to be perceived as difficult or stupid when they ask. One informant reported that she does not want to be perceived as a lethargic and inattentive person. This view was echoed by another informant who assumed that people do not have an insight that some people actually have a hearing loss. In all cases, the participants explained their hearing loss when they did not hear the first or second repetition of the answer.

"I assume that people probably don’t have knowledge, that they do not know I am a person who has a hearing loss” Anonymous 1

5.4 Technical development

A recurrent theme in the interviews was awareness among the participants that the technical development for making information available in text is not fully developed in many places. There was a sense of astonishment amongst interviewees because it was vastly underdeveloped in so many locations. One participant described it as frustrating that she constantly had to go to an information board enable to be updated. Another participant desired for all information that is presented in the loudspeaker should come out exactly the same in a phone text. That would generate a constant concern of missing information. Some felt that the development of technology would improve the experience of traveling, while others did not express an opinion about it. All agreed that information in text is important and the technical development helps travelers to be more independent and have more control.

“It amazes me that they do not make more textual information, at least at airports. Today it's so digitalized. I don't know. It might happen” Anonymous 5

6. Discussion

In the discussion section, results and theory will be put in relation to the research questions. For clarification, the discussion has also been divided by the research questions.

The purpose with this study is to highlight hearing impaired young people’s experiences when they travel international with different transport modes. From previous research, many researchers believes that there is a problem of accessibility in tourism for people with a disability because of lack of knowledge and ignorance (Poria et al., 2010; Bizjak et al., 2011; Domínguez et al., 2019; Burnett & Baker 2001; Woodside & Etzel., 1980; Yau et al., 2004; Poria et al., 2011). This study’s focus is to present their perspectives. The conclusion and discussion will be in context with previous research about the issues of tourism's lack of accessibility.

6.1 What can be perceived as a problem when traveling with a hearing impairment?

As previously mentioned, written information is important for participants and therefore it can create unnecessary barriers. The current study concludes that it is difficult for the participants to be independent when the information is not available in text. The result indicated that development of technology is surprisingly underdeveloped. An implication of this is the possibility that people with hearing loss can feel excluded if they don’t understand the information. According to Kožuh et al., (2016), visual communication forms a connection because understanding of language impacts people to be able to integrate with one another. Also, it could conceivably be hypothesized that it is more common that people with an invisible disability can be even more excluded in context of making it accessible comparing to an visible disability. That hypothesis is based on Lingsom (2008), which indicates that society in general does not have the same understanding for invisible disabilities as they do for visible disabilities, because an invisible disability is not visual for the eye and therefore easier to forget.

People in general feel excluded when they do not understand the language (Kožuh et al., 2016). Hence, it could be hypothesized that development for information in text to include people with a hearing impairment would increase the tourism industry, resulting in more traveling with independence.

Another important finding was that information during trips can be missed by people without a hearing loss. Sometimes it is difficult to hear information from the speakers. According to many in the field, accessible tourism is not only beneficial for people with a disability, many other target groups can find it useful (Domínguez Vila, T., et al. 2015, Huh, C., & Singh, A. 2007, Cloquet, I., et al 2018, Ho, C.-H., & Peng, H.-H. 2017, Altinay, Zehra, et al 2016, Domínguez Vila, T., et al 2019, Dickson, TJ, et al 2017, Yau, MKK et al 2004). It is possible,

24 therefore, that accessible information would generate a better experience for more tourists, and based on WHO (2011), almost everyone will have some form of disability in their life, either temporary or permanently. However, this data must be interpreted with caution because this is not the purpose of the study.

In order to create accessibility, it is important to have an understanding and knowledge of various disabilities and their needs (Figueiredo 2012). Prior studies that have noted that ignorance and lack of knowledge is an issue in tourism (Poria et al., 2010; Bizjak et al., 2011; Domínguez et al., 2019; Burnett & Baker 2001; Woodside & Etzel. 1980; Yau et al. 2004; Poria et al. 2011). One unanticipated finding was that this study indicates that there were no expectations from the participants that services should have implied knowledge about what a hearing impaired person needs. According to Poria et al., (2010), ignorance and lack of knowledge can cause concern for many tourists with a disability and also create an negative experience. Contrary to expectations, this study did find a significant difference between previous research resulting in a context with new knowledge about tourists with disabilities and their needs. As mentioned in the literature review, it is important for people with disabilities who are blind or in wheelchairs receive appropriate services (Poria et al., 2011). This study indicated that the participants did not feel that some service platforms do not consider this important. This result could also put into context with Lingsom (2008), the belief that hearing impairment is an invisible disability this population could find it difficult to make demands on society of their needs because of the fear of rejection and judgement. It is therefore more likely that such exclusions exist between people with disabilities and society.

The results of this study do not explain the occurrence of these adverse events from lack of knowledge, and how it affects the participants' experience when traveling. Also, this study has been unable to demonstrate the lack of knowledge from the service providers. The result only illustrates that the participants did not have any implied expectations of accommodations. However, the participants feel that lack of written information is an issue. This observation may support the hypothesis that it is a lack of knowledge of what accommodation is accessible to a person with a hearing impairment in different transportation modes. According to CRPD (2008), information and communication are an important part for people with disabilities’ independent lifestyles, and that everyone has the right to the same information. However, this hypothesis must be interpreted with caution because this study cannot present the knowledge of the various participants, but only illustrates the result in the context of previous studies of the participants' experiences.

6.2 How dose traveling affect people with hearing impairment when they do not have accessibility?

The results from this study found areas that affected the participants' experience of traveling based on their hearing impairment. What stands out in the interview is lack of available information, where all participants find it difficult to understand what is being said from speakers, before departure and during the journey. When there was lack of information, stress and powerlessness were generated, but the consequences did not affect their desire to continue

25 traveling. Based on a previous study, it is common that tourists who are blind or in wheelchairs can have negative experiences if transportation is not accessible. That can affect the desire to continue traveling (Da Silva. Et al. 2017). The current study found that all the participants desire of keep traveling was not affected, except for one participants that felt it could affect the desire of keep traveling because of the stress can outcome when it is not accessible. These findings may be somewhat limited by the determination of age. The aim of this study is to highlight young people with hearing impairment and therefore the result could have an outcome different if this study’s participants were older, and more particularly if they lose their hearing with age.

The participants in this study are born with their hearing loss and have navigated their whole life with their hearing impairment, they can’t compare to a world where they did not have a hearing impairment. But older people that got their hearing loss with age have a different outcome. It is possible, therefore, that older people that got their hearing impairment with age could have more requirements about an adopted environment. It could be a bigger contrast for people that lose their hearing with age in their experience of traveling. However this assumption must be interpreted with caution because this study aim is not about older people, and don’t have enough with previous studies that support this assumption. This could be an important issue for future research. With a small sample size like this study, caution must be applied, as the findings cannot be generalized to all young people with a hearing loss as well.

The results of this study indicate that the experience of traveling and the requirement of accessibility is individual. Some felt that the lack of information and the stress did not affect their journey and desire to keep traveling, while others considered that stress can affect their desire for going abroad again. The reason for this is not clear but it can be in context with Punsch et al., (2019) theory how variables other than audiological such as gender, age and personality can affect perception and attitude to their own hearing loss. Based on Punsch et al., (2019) theory, it is possible that participants' attitude of traveling and their experiences of inaccessible information impacts how familiar they are with traveling, and also how much they value traveling. There are several possible explanations for this result. As mentioned in the literature review a disability is individual and that everyone has different needs (Figueiredo 2012). Also a person with a hearing impairment has individual needs in what they can perceive in sounds (Adams & Rohring 2004).

Another interesting finding was that all participants wanted control over their journey and that everyone had plenty of time before the departure. A possible explanation for these results may be the lack of written information and the need for an adapted sound environment. Many scholars hold the view that a person with a hearing impairment needs adapted sound environment and written information in order to perceive the information (Latzel & Paluch's 2018; Adams & Rohring 2004; Kožuh et al., 2016; Punsch et al., 2019). According to Kožuh et al., (2016) it can be frustrating when it is hard to perceive the language.

26 There are, however, other possible explanations why all the participants want control, for example that all participants mentioned that their need of control may also depend on their personality.

6.3 Final discussion and conclusion

This thesis has provided a deeper insight into an invisible disability and contributes to our understanding of tourism and accessibility for a person with a hearing loss.

The most obvious finding to emerge from this study is that information in text is the most important for the participants because it is difficult to perceive the sound from the speakers. This study has identified that if information is not available it causes stress but it is up to the individual how stress will affect the experience. This research has also shown that it is important for all the participants to have control and be updated when they travel using different modes of transportation. The findings of this investigation complement those of earlier studies, based on the importance of information for people with a disability (Kołodziejczak 2019; Cloquet et al. 2018; Nazli 2018). Also that information and the quality of the sound is important for people with hearing loss to perceive the information (Kožuh et al., 2016). The need for control can be in context with Yau al., (2004) theory, that people with a disability are not as flexible as people without a disability when they travel.

The findings of this research provide insights in how inaccessible information can affect people with hearing loss when they travel. However, the small sample size did not allow us to generalize. Although the current study is based on a small sample of participants, the findings suggest that it is important that communication via text is important to advance and make progress.

6.4 Further research

This study has some limitations that can be further investigated in this research. First of all, this study could have had more participants to get even more conclusive results to highlight more individuals’ experiences. Additional participants could have made the result outcome different in order to find new themes and other interesting perspectives. However, due to lack of time, it was not possible. Secondly, further research needs to examine more closely the links between a hearing loss and the importance of visual communication. Work needs to be done to establish whether hearing loss affects the experience of traveling with a quantitative study and therefore be able to generalize it. If the debate moves forward, a better understanding of the impact of traveling modes needs to be developed about accessibility.

This research has developed questions in need of further investigation; ● Request of information and outcome ● Habit of traveling

This study found that information in text is one of the most important tools for the participants when they are traveling. However, with a small sample size, it cannot be generalized. This thesis has thrown up questions in need of further investigation. Further research should be undertaken to investigate what information that is important for an outcome. This study highlights the fact that important information should be available by text. It can impact an important issue for future research to understand what information people with hearing impairment need in their requests.

Also this study indicates that everyone’s experience is unique, but a quantitative study could give the opportunity to see a pattern, either in their behaviors of traveling and what can be important for people with hearing impairment. An issue that was not addressed in this study was what scale of travel each participant experienced to produce a different outlook. A greater focus on how much they traveled could produce interesting findings that may account more for a clear pattern in their response in unfamiliar environments. This study found that the participants had different opinions about how they were affected when they missed information. This could be an important issue for future research in order to see if people who do not travel as much affect them more than those who are more experienced in traveling abroad.

7. Summary

The present study was designed to determine the effect of a hearing impairment when traveling. In order to understand that, this study adopted a qualitative method to highlight young people with a hearing impairment and their experience of traveling. In-depth interviews were adopted as a data collection method, because this study wanted an understanding and perspective from the participants. This study has shown the constraints of having a hearing impairment when traveling, and gives suggestions on how the tourism sectors can be of assistance. This study interviewed five participants in Sweden with congenital hearing damage in age between 20-30 years old.

Previous research that is relevant for this study shows the importance of information and the role of transportation in tourism. This research considers this through the participants with hearing loss and what they experienced in their travels. Comparison of the findings with previous research confirms that information is important when traveling (Kołodziejczak 2019; Cloquet et al. 2018; Nazli 2018), and that information in text is important for people with a hearing impairment (Kožuh et al., 2016; Hörsellinjen n.d; Latzel & Paluch 2018). Another notice with comparison of the result and previous research is how accessibility benefits all populations who travel (Domínguez et al., 2015; Huh & Singh., 2007; Cloquet et al., 2018; Ho & Peng 2017; Altinay et al., 2016; Domínguez et al., 2019; Dickson et al., 2017; Yau et al., 2004). Those without disabilities indicated they also preferred texts for obtaining travel information.

28 The process of this study is to use thematic analysis which contributes with four different themes that highlight the result. The four different themes indicate what was problematic when traveling and what they require when traveling. Also, how inaccessibility could affect the participants. The results showed that the participants had an impact from other travelers who perceived the information. It was common that they asked others for clarification but also that they tend to travel with someone. The results also indicated that the development of technology could help prevent the fear of missing information when traveling. One of the more significant findings to emerge from this study is the participants struggle to perceive information from speakers. Also, their need of information in the form of a text and that information being updated is important when traveling. It was noticeable that inaccessible information caused stress, but how the stress was on an individual basis.

The social relevance and importance for this study is that tourism should be accessible for everyone. UN rights for people with disabilities are clear, but according to previous research, it is an issue in the tourism sector making it accessible for everyone (Figueiredo, 2012). Also, this study is intended to be the voice of an invisible disability, and an introduction for new perspective and research for people with a hearing impairment. Hearing impairment is an invisible disability and Lingom (2008) indicated that people with invisible disabilities tend to have their needs missed.

This study indicated what is needed for travelers with hearing impairment.

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33 APPENDIX 1 – Topic guide

Purpose of the study - Why the study is done - Anonymity - Recording

Introduction - Age - Current occupation - Geographical location - If the participants want to explain short about their hearing impairment

The motive for traveling international, not daily ones - What does travel mean for you? - What makes you want to travel? - What can make you desist traveling? - How do you usually travel?

How can your hearing impairment affect when you travel - Do you want to give examples of different situations? - Has your hearing impairment affected the choice of destination at any time? And what was the cause then?

Aid - Is it something that can assist you when you travel? - What can facilitate more for you?

Transport in context to hearing impairment - How can the transportation availability affect you when you travel? Both at stations and during the journey. - What do you need based on your hearing loss when you travel? - What kind of limitations do you have in context to your hearing loss when traveling? - Is there any transport option you prefer? - Is there any transport option you do not choose to travel with?

Experiences - What is your experience in traveling with different traveling modes? - What is your experience when you need to change traveling modes? - What are your experiences traveling with a hearing impairment? - Are there experiences that have influenced your choice of traveling?

Knowledge - Do you perceive that the staff has good knowledge about the hearing impaired community? - Is there anything you wish staff were more aware of regarding hearing impairments?

34 Information and communication - How do you think the information and communication is adapted for you? - How important is information and communication to you when traveling? - Do you feel the information is reliable?

Closing part of the interview - Is there anything else you come up with that affects your travel?