Winning against it : searching for continuity after onset of disability

“Winning Against It”

Searching for Continuity after Onset of Disability

Jocelyn Torrez 10863613 Email: jocelynt@berkeley.edu Phone: 06 29299177

Supervisor: Anja Hiddinga Second Reader: Stuart Blume Third Reader: Kristine Krause

University of Amsterdam Graduate School of Social Sciences

Cultural and Social Anthropology Submission Date: June 21, 2015

Table of Contents

1. Prologue ... 3  

2. Introduction ... 4  

2.1. Entry in the Field ... 4  

2.2. Disability as Biographical Disruption ... 6  

2.3. Research Question ... 9  

2.4. Acceptance of Disability Across Cultures ... 9  

2.5. Methodology ... 11  

2.6. Research Setting ... 15  

3. Relationships ... 18  

3.1. Rearranging Social Involvement ... 18  

3.2. Independence vs. Dependence ... 20   3.3. Family ... 22   3.4. Friends ... 26   3.5. Significant Others ... 28   4. Continuity ... 32   4.1. Notions of Acceptance ... 32  

4.1.1. Effect of Age and Time ... 34  

4.1.2. Effect of Cause and Level of Injury ... 35  

4.2. Searching for Continuity ... 37  

4.2.1. Limitations of Rehabilitation ... 40  

4.2.2. Perspectives on Continuity ... 43  

4.2.3. Technology ... 44  

5. Sports ... 49  

5.1. Restoration ... 49  

5.2. Functioning in a Social Network ... 54  

5.3. Structured Participation ... 55  

5.4. Competition ... 56  

5.4.1. Comparing Oneself to Others ... 57  

5.4.2. Competing with Oneself ... 58  

5.4.3. Winning ... 60  

6. Conclusion ... 62  

6.1. Summary and Implications of Research ... 62  

6.2. Discussion ... 65  

7. Acknowledgments ... 67  

1. Prologue

It was a rainy day in January when I took a train to The Hague to meet Jasper for the first time. We initially corresponded via email the day before. He seemed delighted to speak with me and share the story about his life and his spinal cord injury. I introduced myself in the email as a student who was interested in this topic because my father

acquired a spinal cord injury when I was young. I told him my intentions were to research the way the sudden onset of disability affects families. He replied to my email quite promptly and I felt relieved that he actually seemed intrigued about the study I was doing. He took a great interest in knowing about my father as well: asking to know the height of my father’s injury, how and when he was injured, and even my age at the time of his injury. We exchanged messages back and forth for a few moments and finally we agreed to meet the very next day in his home.

When I arrived at Jasper’s home, he and his wife, Annelinde, greeted me and served me tea and cookies. The three of us sat at the kitchen table, Annelinde and I sipping tea, while Jasper entertained us with his computer. He showed me photos of him during his travels around the world, some at the beach, some skiing, but all of him in a wheelchair. And he had an assortment of videos prepared to share as well, of persons in wheelchairs doing all sorts of extreme sports. “They are fearless,” Annelinde said, as we watched in amazement.

Jasper told me all about himself and the impact his spinal cord injury has had on his life. He confidently shared stories about his involvements from wheelchair tennis to hand cycling, and community service as well. Jasper is currently a member of the

Dwarslaesie Organisatie Nederland and even dedicates time volunteering at rehabilitation centers to speak to new spinal cord injury patients. After reflecting on his injury he came to the conclusion that despite all the changes his spinal cord injury caused him, the event changed his life in a positive way.

You learn that there are more solutions than you think in the wheelchair. You can always do more than you think you can. You are learning to be born again.

2. Introduction 2.1. Entry in the Field

Matters of disability became important to me when my father experienced a spinal cord injury many years ago. I knew I wanted to do my research in the field of disability studies and what piqued my interest most about spinal cord injury was that people are not born with this particular disability; it happens to them suddenly.

Spinal cord injury (SCI) occurs when there is damage to the spinal cord. Such an injury inhibits communication between the brain and the rest of the body, resulting in paralysis. Paralysis is the loss of feeling, movement and functioning. The degree of paralysis depends on where exactly the SCI occurred on the vertebral column. In other words, the higher the lesion, the higher the level of paralysis. There are seven cervical vertebrae in the neck, below those are twelve thoracic vertebrae connecting to the ribs, and lastly there are five lumbar vertebrae in the lower back. Persons with higher injuries have quadriplegia/tetraplegia, meaning that they have paralysis of all four limbs. Persons with lower injuries have paraplegia, meaning that they have paralysis of the legs and lower body. The actual vertebra in which the injury took place is often used to profile the person with SCI; for instance, a person with an injury to the tenth thoracic vertebra would call his injury a T-10. Once SCI occurs individuals are forced to learn to live in disabled bodies immediately and without any warning, as opposed to individuals who are born with a disability and have learned to live with their conditions all their lives. I became interested in the ways people deal with the ‘before’ and ‘after’ predicament as they shift from able-bodied to disabled, and so I set out to research persons affected by spinal cord injury.

In preparation for my fieldwork I contacted The Dutch Spine Society, Dwarslaesie

Organisatie Nederland, and various SCI rehabilitation facilities in the Netherlands in

search of participants for my project. The rehabilitation centers I reached out to were

Reade in Amsterdam, De Hoogstraat in Utrecht, Heliomare in Wijk aan Zee, Rijndam in

Rotterdam, and Sophia with a main location in Den Haag and other locations in Delft, Gouda, and Zoetermeer. I made countless attempts to reach respondents this way but the results were miserable. My requests were forwarded time and time again to other staff

members until they were eventually denied or ignored by all organizations. Feeling desperate, I tried another approach and I offered to volunteer with the organizations, but those efforts were also to no consequence. My original plan for gaining access to SCI patients yielded no results. The staff of these organizations and facilities controlled my access to the field and they were extremely reluctant to help, although I understand that it was out of protection for their patients. However, it made me doubtful about the

feasibility of this project.

Getting in touch with persons with SCI for this thesis was a feat that proved surprisingly difficult, if not impossible using my original plan. I decided to redirect my efforts. Instead of looking for access via organizations and rehabilitation centers, I looked online in order to contact individuals in a more direct method. In the end, I came across a special group of people who happened to be quite physically active despite their

disabilities. Naturally, one would assume that their physical activity had been incredibly reduced due to their injuries, but that was not the case.

I first discovered Jasper online via his blog. Jasper’s blog contained a brief story about his life alongside photos and his email address. He seemed enthusiastic to meet me and talk about his experience. Once our first interview took place in his home, he added me to a Facebook group that he managed, and he proceeded to share my information with some of the people in his other networks. After this the phone calls and emails began rolling in and my fieldwork was off to a small start. What I noticed was that Jasper and the rest of the people contacting me were ambitious athletes participating in sports; and the few who did not do competitive sports were still regularly committed to some sort of physical training. I could not have anticipated any of this information beforehand. This was in addition to the unexpected surprise when some respondents contacted me of their own will and asked to be interviewed; an unexpected turn of events indeed. The fact that I came across this group of individuals who not only happen to be physically active but also at stages in their lives in which they were eager to talk about traumatic events—with an outsider such as myself no less—lead me to believe that they all adjusted to their conditions remarkably well. And presumably through this, they have found ways to guide their lives with a sense of purpose, albeit with new bodies accompanied by very different physical capabilities than they had before.

How is it that people find ways to cope with such drastic changes stemming from onset of disability? How do they live with altered physical capabilities? And how do they, with untried disabled bodies, engage in their former environments? It is important to acknowledge that disability entails more than just a physical change to the body, so we should first consider the ways that disability is understood. In order to do so we must take a look at the discourses within disability studies.

2.2. Disability as Biographical Disruption

In order to frame my research, we must look at how disability is understood. Different approaches in understanding disability are discussed in the field of disability studies. It is important to understand disability not only in medical terms, but also in socio-cultural terms. The social model is one way of understanding, which revolves around an

underlying idea that disability is constructed socially through inequalities. In this view, the condition is only experienced as a disability when the environment is not adapted to the body. The more medical approach adopts the idea that the actual illness or

impairment is what defines disability. Modern disability studies scholars reject the more medical approach and opt for a more socio-cultural approach. Disability studies scholars are committed to equality and social inclusion of disabled persons, whereas medical sociology scholars are more interested in informing professionals or policy-makers for the sake of disability services (Thomas 2004: 570-1).

Founding member of the disabled people’s movement and disability studies in Britain, Vic Finkelstein cites the UPIAS (Union of the Physically Impaired Against Segregation), “Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society” (Finkelstein 2001: 1). He does not disregard the effects of impairment; however the consequences of physical impairment do not make up the whole experience of being disabled. We should not sever the ties between the physical experience of disability and the social one.

On the other hand, Shakespeare and Watson propose abandoning the social model in its entirety because it ignores the impact of the body way too much. To Shakespeare and

Watson, impairment and disability are not dualistic but describe different places on a continuous sequence. “It is difficult to determine where impairment ends and disability starts” (Shakespeare & Watson 2001: 22). In accordance with this understanding of disability, everyone is impaired at some level, however some individuals are impacted by their impairments more than others. Disability is an intricate discussion of not only biological factors, but also psychological, cultural, and socio-political factors, which cannot be extracted (Shakespeare & Watson 2001: 22).

Williams critiques the social model, and proposes an understanding of disability through a critical realist perspective that challenges postmodernist social reductionism, biological reductionism, and one-sided social determinism (Thomas 2004: 577). For Williams, disability is a developing quality in which the biological reality of physical impairment, structural enablements and constraints, and socio-cultural influences all interact (Williams 1999: 810). He acknowledges the exchange between the physical restrictions and societal hindrances involved.

Disability is a category with different meanings depending on the context, but what is important to understand is that it is a universal matter. “Unlike the categories of race and gender from which one can only enter and exit very rarely and with enormous and conscious effort […] disability has a distinctive quality: It is a category anyone might enter through aging, or in a heartbeat” (Ginsburg & Rapp 2013: 55). This key

characteristic of disability is essential for my research because persons affected by disabling injuries are the perfect example of this, owing to the fact that they once lived their lives as able-bodied.

The disruptive nature of disability contributes to notions of ‘biographical disruption’ (Bury 1982). According to Bury, disability is an experience that throws into disarray the structures of everyday life and forms of knowledge (Bury 1982: 169). People facing chronic conditions frequently experience a crumbling away of their former self-images without simultaneous development of equally valued new ones (Charmaz 1983: 168). Diminishing perceptions of self can create breaks in identity. In addition, visibility of the impairment is a factor in defining identity. An individual’s physical appearance will never be the same once they are bound to a wheelchair. Since the condition is visible and cannot be hidden, then no matter the degree of the impairment at any given time, the

identity is still constrained by the wheelchair (Kelly and Field 1996: 249). Once the onset of a chronic condition occurs, individuals are confronted with the long-term implications of their new circumstances (Bury 1991: 455). Identity is intricately tied with the routines of everyday life and since chronic illnesses are often unpredictable, persons affected by them may experience uncertainty about what they can and cannot do, and may even voluntarily restrict their lives even more than is necessary (Charmaz 1983: 174). Of course the affected individual’s life may remain continuous, but self-image and other sociocultural constituent parts may be sharply disrupted and can be aggravated by many factors. We can see that factors such as visibility, changes in physical appearance, and changes in everyday life very much contribute to perceiving disability as a disruption or a break, but what does another perspective yield? What are the factors contributing to seeing life as continuous, and with meaning, and not emphasizing the disruption?

People who challenge these notions of “biographical disruption” believe that there is an over-emphasis on the ‘sick role’ and that it is more effective to emphasize

continuity and adaptation (Bury 1982: 168). With this view, illness events should be visualized as just that, single events on a continuum alongside other life events, making a point of the continuity of life. Von Peter states that illness events should not be seen as dividing the pre-illness self with the post-illness self as two distinct selves, but rather that “every human being contains a mixture of partially connected features,” (Von Peter 2013: 52). Von Peter goes further with this idea maintaining that identity is continuous, and stresses “chronic identities” that are “fluid” (ibid). On the one hand, we should not emphasize distinctions between selves, but on the other hand, this “chronicity” and “concrete being” Von Peter speaks of assumes adaptation. How are individuals adapting to their situations to create fluid identities? Instead of emphasizing so much the

disruption, it is valuable for disability studies scholars to understand how continuity can be achieved, and we should examine the ways in which adapting and coping work in the process.

2.3. Research Question

From the literature discussed above we can understand that the onset of disability poses a major biographical disruption in an individual’s life, but if this is so, then how is it that the people I met seem so successful? My respondents appear to have developed equally valued new self-images after their injuries despite what the literature may have predicted. The research question this thesis aims to answer is: How have these particular

people who seem so successful in fitting their new physical conditions into their lives dealt with these matters of disruption and alternatively established continuity in their lives? Initially I wanted to focus on writing about how people and their families are

affected by the onset of disability but over the course of my research the emphasis shifted. How are these people maintaining fluid, ceaseless identities and creating connections from their lives before their injuries to their lives in the present? How have they recast their identities to fulfill new needs? And what factors may have played a role in that? My concern is to explain the ways a successful circle of individuals cope with the issues surrounding the onset of disability, understand how they search for continuity in their lives, and share any knowledge that can be drawn from their experiences.

2.4. Acceptance of Disability Across Cultures

Research on SCI cases in Iran and Colombia demonstrate key factors contributing to the coping with disability, or the lack thereof. Various examples are forwarded here to demonstrate the barriers that individuals with SCI are faced with and the different social and demographic factors that may affect how individuals deal with the onset of disability.

The example in Iran demonstrates the importance of facilities, provisions, and knowledge. One of the biggest barriers that persons with SCI in Iran experience is the lack of societal acceptance and support (Babamohamadi, Negarandeh, and Dehghan-Nayeri made the patients’ task of coping with their own disabilities quite difficult. In accordance with the lack of societal support, participants also reported a lack of government support; this manifested itself into other hindrances such as lack of facilities, inaccessibility, lack

of financial resources, and lack of employment opportunities. One major barrier was the lack of knowledge, in that rehabilitation resources were limited and patients themselves were never given any education on what their disability entailed. Patients and their families were left with uncertainties about what they should and should not do in their condition, worrying and wondering whether their decisions would have lasting

consequences or could even be fatal. In Iran, the Welfare Organization provides rehabilitation and support services for people with SCI, but the organization receives little funding from the government. Issues of accessibility and integration of the disabled require more attention from all different sectors of the community, but persons in Iran with SCI and the larger society as a whole are not familiar with the matter and thus little attention is given to these needs (Babamohamadi et al. 2011).

For persons affected by SCI in Iran, their most significant means of relief was religion and spirituality. Their belief in God helped patients accept their disability more easily and behave more patiently because they saw it as a fate that was chosen for them by God (Babamohamadi et al. 2011). Other activities that facilitated their coping and acceptance were positive thinking, supportive networks, and self-confidence, all of which I deem to be positive facilitators that may aid in coping for all people with SCI, not just specific to Iran. Nonetheless, religion was the most effective way of coping with SCI in this particular case. This can be attributed to the religious culture in Iran, but in other cultures it is very possible that individuals may find great comfort in their faith, seeing their disabilities as a part of their destiny and through that have assurance of the

continuity of their lives. However, none of the respondents in my study mentioned faith as a substantial or even minor contributing factor in the way they dealt with their own disability.

In a 2012 study based on persons with SCI in Colombia (Nicholls et al. 2012), the results indicated an overall low acceptance of disability based on the Acceptance of Disability Scale (ADS), a 50-item instrument in measuring acceptance. This scale had only been used previously among population samples in the U.S. and in comparison the scores in Colombia were significantly low. A possible reason for Colombia’s low scores is that rehabilitation services and medical care in Colombia are scarce. According to the findings, the factors that had a linear relationship with disability acceptance were gender,

time since the injury, and level of depression. Demographic characteristics such as age, marital status, employment and socioeconomic status did not have a linear relationship with acceptance, and neither did type of lesion, or cause of injury (Nicholls et al. 2012: 1084). ‘Level of depression’ was directly correlated to acceptance of disability, but is impossible to tell which one is influencing the other. And ‘time since injury’ having a linear correlation to acceptance may suggest that over time acceptance of disability increases. There is no choice whether to cope or not; it must be done. However this is not self-evident. It is quite possible that time could aggravate a supposed negative or ‘low acceptance’ of disability so I would not argue that time is a direct indicator of disability acceptance. Women exhibited higher levels of acceptance than men, while over 90% of the participants were male. As stated by Nicholls et al. (2012), more men suffer from SCI than women and this is true all around the world; the worldwide ratio of male to female SCI patients being 3-4: 1 and the ratio in developing countries is as high as 7-8:1 (Nicholls et al. 2012: 1086). Furthermore, the Latino culture places great importance on masculinity and machismo, which is problematic when physical abilities are then

compromised by disability. However, it is noted that almost all cultures do share a certain concept of masculinity (Nicholls et al. 2012: 1086), which suggests that disabled

masculinity is a universal obstacle affecting men in almost all settings. These common circumstances play a role in how individuals deal with their disability regardless of culture, which I will set aside as I examine my group of participants in the Netherlands.

2.5. Methodology

This thesis is based on qualitative research methods. My fieldwork took place in the Netherlands from January 2015 to April 2015. Interviews primarily took place in

Amsterdam, Rotterdam, and The Hague. Over the course of my fieldwork I had in-depth interviews with fifteen participants: thirteen male and two female. Their ages ranged from eighteen to sixty-eight. Of the fifteen persons, twelve of these are paraplegic with spinal cord injuries ranging from T-4 to T-12. Therefore these persons acquired injuries to the thoracic vertebrae, meaning that the damage to the spinal cord occurred in the mid- to lower back and their lower extremities are paralyzed. The causes of injury for these

individuals included car accident, motorcycle accident, gunshot wound, construction accident, bleeding to the spine, and various different sporting accidents. In this study I included three people who do not have spinal cord injuries but whose onset of disability caused immobility of the legs, placing them in wheelchairs at intermediate points in their lives. Accordingly, for the purposes of this particular study, their disabilities are more similar to SCI than they are different. Of the non-SCI participants; one respondent suffered an ankle injury from a fall in which nerve damage spread through the whole leg, one respondent was diagnosed with cancer in both legs, and one respondent had a genetic condition that did not place him in a wheelchair until age eleven. All but three of the total respondents hold jobs or are currently students. And in addition to their everyday

activities, each of the participants are involved in physical activity ranging from regular physical training in the home and rehabilitation facilities, to wheelchair tennis,

wheelchair basketball, wheelchair rugby, and hand cycling.

In addition to the fifteen disabled persons, I had one in-depth interview with the daughter of one of my key respondents because he happened to be the only person who had a child at the time of injury and my initial interest for research was in family. Furthermore, I spoke briefly with other family members or partners if they were in the home at the time of the interview. Speaking with family members and partners was not only interesting but also informative because I was able to gain some understanding into the discrepancy between the experience of the person with the injury and the experiences of the family. Most interviews took place in the homes of the respondents, while a few respondents asked to meet in cafes or in rehabilitation centers. A few times, before or after an interview, respondents took me with them to their appointments at the

rehabilitation centers they received treatment at. They provided tours of the facilities and introductions of some of the staff. This enabled me to speak with the nursing staff in both

Reade in Amsterdam, and Rijndam in Rotterdam; thus I gained a broader perspective on

the respondents’ experiences.

Given the questions I was interested in for this study, this research was based on my respondents’ narratives. This research could not have been based on just observations or surveys because I was interested in their illness experiences, thus I needed narratives that told the stories of their past, present, and future (Garro 1994: 777). In the beginning of

the interviews I would ask standard biographical information and then I would inquire about the story of their disability. In this way, respondents informed me about their lives before injury, about how they acquired a disability, and then the events that followed. The narratives that emerged were “inseparable from the ongoing stories of the lives of these individuals” (ibid). I opted for a more in-depth and semi-structured approach to allow my participants to “develop their own account of the issues important to them” (Green & Thorogood 2013: 96).

All of my participants were voluntary and I utilized informed consent to let them know of their purpose in my research. With their consent, I also recorded my interviews. I used confidentiality so that their identities and personal information could be preserved; I approached this by using pseudonyms in place of their real names. For the most part interviews lasted between one and two hours, and with a few of my more forthcoming respondents they lasted about three hours. Some of the respondents I interviewed once or twice, and about a quarter of them I interviewed up to four times over the months of fieldwork. I found that after meeting more than once I was able to build relationships of trust and more easily communicate. I definitely had much deeper discussions with the respondents who I met the most with. In some cases it was not possible for me to meet more than once because of schedules, but in other cases I made the choice myself to not meet again. I only decided not to schedule a follow-up interview when I noticed that the conversations were not going anywhere or that the respondent was very guarded, which I understood. I still gained compelling information about their life history, daily activities, and social involvement, but it was clear when the respondent did not want to delve into certain subjects. I had to take into account the emotional consequences involved with my research especially because I was dealing with sensitive subjects such as ill health and traumatic incidents (Green & Thurgood 2013: 74). I must also acknowledge that by listening to illness narratives, I was thereby taking an active part in their construction (Hydén 1997: 60). The simple fact of speaking to the particular subjects of my choosing was a process of categorizing, identifying, and sympathizing in itself.

In writing this thesis I came across another question: why was it so difficult to get in contact with people with spinal cord injury? What is it about this group that made access to the field almost impenetrable? I encountered many limitations while trying to gain

access to the field; not only are individuals extremely protected by the rehabilitation centers and the local SCI associations, but they are also quite guarded by their peers. Some respondents would refer me to certain friends for the purposes of an interview, but only selected particular individuals who they considered prepared to handle such

conversations. While Patrick drove me back to Rotterdam Central Station at the

conclusion of our second interview, we discussed my progress in finding respondents for my research and he mentioned a friend of his who he did not deem fit for an interview.

He has a lot of trouble doing simple things, like going to the grocery store on his own because he doesn’t like for people to see him in a wheelchair. So talking to a young girl like you who asks questions… no, he couldn’t handle it.

It was interesting to observe this evaluation of another individual’s aptness for an interview. Most likely this type of assessment is in line with the rehabilitation centers’ reasons for denying me access. Persons with SCI are assessed on their ability to cope with their conditions; out of protection for this group there is a reluctance to let in a student researcher like myself.

Another fact to consider was my position throughout the project as a student and as a young female researcher, which may have affected my ability to gain access in the field and contributed to the difficulties I experienced in the beginning. My position may have also had an influence on my ability to develop and to maintain rapport with respondents; as a novice female fieldworker my presence was not necessarily threatening or

intimidating especially to respondents who are older and professionals, but in some cases they indicated that they were embarrassed to talk about certain aspects of their disability with me. I understand that individuals with SCI face very traumatic and emotional consequences in which feelings of embarrassment or misfortune may permeate.

Individuals deal with onset of disability differently, and it may be more difficult for some to recount painful or traumatic events. This may be especially true for individuals who are still being rehabilitated because their injuries are the most recent.

Along those lines, in an attempt to protect my respondents, I often concluded interviews sooner than I would have liked to. I considered some participants in my study to be more candid and forthcoming than others. If I ever noticed moments in which respondents were guarded or uncomfortable with certain topics of conversation I tried to steer away from those. I purposely tried to avoid any negative emotional consequences

because it was not my purpose in this research to force individuals to relive painful memories. Indeed I interviewed these particular respondents because of the fact that they were affected by the onset of disability, but my focus was not on the injury itself. Instead I focused on their ways of coping with the outcomes of their disabilities and my intention was to explore the ways in which they looked for continuity, with an emphasis on

physical activity.

Upon meeting my first key respondent, I mentioned that my interest in the topic of my research came from the fact that my father has a spinal cord injury and became paraplegic when I was ten years old. He suggested that when reaching out to other respondents I should share this information about my closeness to the subject matter, specifically advising me to “indicate that your father has a spinal injury, they understand it better.” I observed that respondents liked to ask me questions about my father during or usually at the end of the interview. They would ask me specific things, like “What is the height of his injury?” “How old was he at the time?” “How old were you at the time?” “Does he play any sports?” It appears that these types of questions are important when trying to understand the experiences of a person with a spinal cord injury. A few respondents even wanted his contact information in order to meet him. They were insistent that my father be involved in sports and wanted him to join them. I had to explain that this was not possible as he resides in the United States.

2.6. Research Setting

In the following I will add some context to the way disability is dealt with in the Netherlands, to demonstrate what factors I find most pertinent in the outcomes of

disability. In contrast with the recent cases in Iran and Colombia, lack of knowledge and resources does not appear to be a problem in the Netherlands. The participants I spoke to indicated that wheelchair accessibility in public space was and still is an ongoing issue in the Netherlands. Aside from this there is an emphasis on informing patients of their condition, and they are educated about what is going on and what they can do about it. Generally the Netherlands is widely acclaimed for its social welfare system and

support they received not only during their stay in rehabilitation, but also in the time following it, identifying the adjustments that were made to their homes, to their workplaces, and the resources that they were provided with. Viktor explained his experience on the matter.

In the Netherlands if you get a very severe injury, the municipality, the city, must make sure that you have a home. They must make sure that I can live again. So they must give me a wheelchair and they have to adjust my house in a way that I can live in it again. In my example, they rebuilt my bathroom and I got a new kitchen and I got a new front door. They made it in such a way that I could get inside, some sort of ramp.

The other respondents, even the few who were not able to return to work, echoed these sentiments entirely. Although a few became unemployed after their disability, they were not left struggling financially just to get by or to cover their medical costs; an example that government support here is not lacking. Two of the participants I interviewed mentioned that their offices and the bathrooms in their workplaces were adjusted for accessibility, and one of them mentioned that even the gym in which he frequents adjusted their facilities for his accessibility as well.

The resources respondents generally are provided with post-injury are not limited to just physical accessibility to their homes and workplaces. They are also provided with physical training in the rehabilitation centers, psychological support, access to various organizations that are specifically dedicated to the recovery of persons with SCI, and access to a variety of different sports teams and sporting equipment to foster the

maintenance of a healthy lifestyle despite disability. Persons who have a disability in the Netherlands are presented with resources and support in different avenues in order to allow patients to return to their regular lives. Their return to ‘normal’ life is intended to be as close to their able-bodied life and as seamless as conceivably possible. Therefore, I will not discuss those factors such as educational resources, accessibility, or

governmental support as factors in acceptance of disability in my research. Instead, I will focus primarily on the social factors in their lives to investigate the ways in which those manifest and enable them to cope.

In the first chapter I present the ways in which individuals’ social environments begin to change after the onset of disability. The following chapter I search for ways to explain how individuals are creating continuity in their lives post-injury. In the next

chapter I demonstrate the role that sports play in my respondents’ lives and examine which particular elements in sports contribute to creating a sense of continuity. I end this thesis with a conclusion in which I summarize my findings, consider the implications of this study, and put forward some practical thoughts for discussion.

3. Relationships

3.1. Rearranging Social Involvement

After sustaining a disabling injury, individuals may be inevitably drawn to rearranging their wider personal and community involvements (Bury 1982: 175). But with this rearrangement, they may begin to “restrict their terrain to local and familiar territory where they are least likely to be exposed to the gaze and questions of acquaintances and strangers” (Goffman 1968, Barker and Bury 1978) (ibid: 176).

Corresponding with this, Viktor admits to restricting himself to only places where he was certain of his accessibility.

If I want to go somewhere I just go there and if it’s not accessible, I go to the next place. I used to only go to the same places. I had some restaurants where I always know I could get in, I know some museums where I can always get in. and I always went to those. Over time he changed that habit of restricting himself to only certain known places. Now Viktor goes wherever he wants to and if it does not work out at the first place then he finds another. Although situations like these often have their ways of working themselves out, this does not stop Viktor from planning ahead.

I have to plan everything ahead. Especially if it’s longer than three hours and I have to go to the toilet somewhere. […] If I go somewhere by car I have to plan where I’m going to park the car. When I go to a restaurant it is nice to know if there is an accessible toilet. […] Especially when I’m out of the daily routine, it’s a danger. So if I go to do a race somewhere, I used to email the organization if they had an accessible toilet and if they don’t have it I don’t go.

In terms of rearranging one’s involvements, Viktor mentions that he specifically tries to avoid meetings of the D.O.N. (Dwarslaesie Organisatie Nederland), although he is a member.

I don’t choose to meet people just because they are in a wheelchair. I think I am more than the wheelchair. And I like to have a normal job as much as possible, and I like to go everywhere, where everyone else would go, and not with a group of people in a

wheelchair to a special place or so.

Along those same lines, Viktor expresses a little distaste for one of the Facebook groups that connects him with other people in the Netherlands with SCI. Although he was able to stay connected with people with similar issues and concerns, he removed himself from one particular group because they complained too much about their injuries and

inaccessibility. He finds that the negative and opinionated posts are unproductive and prefers to be a member of another SCI recovery group in which members post articles and share tips and advice with each other.

Gertrud reveals the ways in which she rearranges her social involvement and the challenge it is to do simple things like get out of the house to meet a friend.

I have these periods that I want to retreat a little bit, not so much contact you know, because then every time I go out of the house I have to take care of all the clothes and toilet and all this [...] It’s tempting to say ‘Oh I stay at home’ and sometimes I give in to it. But then I recognize that I also get energy talking to people and being with people. The danger is that your world becomes smaller and smaller.

Friendship and community involvement may become interrupted not only because of the apparent mobility issues, but also because of embarrassment with getting dressed or using the toilet, which are issues that the disability creates (Bury 1982: 175). What once were very simple activities such as meeting with a friend or eating at a restaurant suddenly become major events that require a conscious effort and extensive planning (ibid). The issue is not that individuals are voluntarily isolating themselves or that they are unable to regular activities; it is that even the simplest of outings can become a burden and may not seem worth the effort (ibid).

It takes much energy to take care of yourself in such a state. Then it’s a challenge that you step out of your world and make contact and it’s very important because otherwise […] you come to a point where you don’t want to live anymore. […] People they help you, that you are not retreating only in your own world, but that you still stay connected and have energy around you.

In Gertrud’s case, the moments when she retreats a bit from society, she finds that she has gained a new awareness of herself. Adapting to a serious disability may take an

individual on a journey of discovering his or herself (Charmaz 1995: 675).

You also learn about yourself very much. Because when you are good, the attention is very much on the outside, you want to reach this and to do that. And if that is not so easy anymore, you are forced to look at yourself without all these attractions and go to a deeper level, ‘What is the meaning of life?’ and ‘Who am I?’ I tried to use these periods to also learn more about myself and my essence […] We are much more than only the body so there is much to learn.

In this sense then, adapting to impairment can foster deeper levels of consciousness, not only of the self, but also toward an individual’s situation and his or her place with others. (Charmaz 1995: 675).

3.2. Independence vs. Dependence

People who acquire an immobilizing disability face the issue of dependency. With the loss of mobility comes a loss of independence, self-reliance, and autonomy, which can have damaging effects on social relationships. Any act of interaction between two adults assumes independence, and that very premise is damaged once dependency issues arise with the onset of disability, even striking bonds in which individuals may have thought to be long lasting (Murphy 1990: 199). For Murphy, the problem of

dependency is more than just a problem of physical reliance, because it also contaminates identities and social ties. Disabled dependency produces a type of off-kilter social

relationship, an imbalance that may be even more disabling than the physical impairment itself (ibid). The disparity that dependency creates may be detrimental and have lasting effects on ones friendships.

Independence is a major concern for all my respondents and it is something they all strive for. Once the onset of disability occurs, individuals embark on a journey to regain independence and maximizing one’s independence in the wheelchair is of utmost importance. This is especially true for respondents who are in a relationship. For those who are involved in relationships with a partner maintaining that independence is an additional cause for concern. Gertrud describes an extreme aversion to the thought of her spouse taking up the role of a caretaker, or as a live-in nurse.

When I got worse with walking […] I tried to be as independent as possible all the time. I tried not to fall into the trap of asking him to do things when I can do it myself, because sometimes it’s easy. You know? ‘Oh, give me that,’ ‘Oh, can you do that’ … so I still watch myself to make sure I don’t do that; that we are partners and not some nurse for each other.

According to Bury, disability “brings individuals, their families, and wider social networks face to face with the character of their relationships in stark form, disrupting normal rules of reciprocity and mutual support.” (Bury 1982: 169) But when dependency in relationships increases it can cause serious problems. Gertrud prefers to maintain such independence not only to keep a fair relationship between her and her husband, but also with relationships with her friends. She likes to keep her relationships as they were before her injury, and does not want the wheelchair to ever become a factor.

I don’t have a social network around me to help me and take care of me. I only have friends and I meet them and we talk about things and so on, but without helping me with something […] And I like that because then you have a normal relationship; it doesn’t matter that I sit in the chair. So sometimes I’m a little bit worried when I get older and I need more help. I don’t have the people around me to help me. Because I want to have these relationships around me as friends and partner, so I will have to see then… how I arrange that.

As she gets older and begins to really need the extra help she so often rejects, she fears she will not have any friends to call. Although she values the ability to keep a very ‘normal’ relationship with her friends, she has kept them at such a distance that it would be difficult to now begin to ask for help if she needs it.

In Simon’s case, his extreme aversion to being dependent on others was a great motivating force that allowed him to be released from rehabilitation early.

Because I don’t like that time. Nurses and people younger than me help me and clean me and I don’t like that. So that gave me a boost to go as quickly as possible.

Doctors told him that with his particular injury he would rehabilitate for ten months to a year, but he did everything he could to prove his independence and prove to the doctors he was ready to leave sooner. He was released from the rehabilitation center six months after his injury.

Patrick explained how his participation in sports forced him to be independent and learn how to take care of himself, to which he is grateful. Soon after his injury he

participated in a hand bike battle that he described as life changing. Partaking in that weeklong race event forced him to deal with issues of traveling away from home for the first time post-injury and cope with any difficulties on his very own.

Just by being there abroad, being away from home in your safe environment, you have to fix problems… practical problems. I had to shower standing up for the first time. I went into a sauna for the first time since my injury. […] That race and the whole week around it brings you some moments when you have to suck it up. If it’s emotional or practical, suck it up. Deal with it.

Typically rehabilitation after SCI can be split into two parts: the first part being the months the individual lives in the rehabilitation center immediately following injury, and the second part being the time after one is released and only goes back for day-to-day appointments. Patrick considers his first race post-injury as a supplement, or unofficial ‘part three’ to his rehabilitation.

3.3. Family

The onset of a disability may have varying effects on a family depending on the cohesiveness of the family before the disablement, and on the disabled person’s age and sex. (Murphy 1990: 204). Other demographic factors to consider include family size, economy, and social activities (Ingstad and Whyte 1995: 14). A family system undergoes greater disruption when a husband or wife becomes disabled because roles are thrown into disarray (Murphy 1990: 205). A couple’s sex-life becomes an issue, male

“breadwinner” and female “housewife” social roles are dismantled, and paternal and maternal authority over children can become unclear (ibid). “It is on the level of such simple physical dependency that a disability becomes the dominant motif of a family’s life, for all social relations become reorganized around it. The disabled adult sometimes has to be cared for like a child” (Murphy 1990: 206). For the most part, respondents found that relationships between family members remained unquestioned. Joep describes this instance.

From the first day they support me, my parents, my girlfriend. Naturally they were in shock but they never show that to me. So from the first day of my rehabilitation they always support me to go on with my life and so. And that’s what I do.

Onset of disability may also affect families in such a way that individuals feel closer with one another than they felt before. Individuals may experience greater solidarity as they gather to support the disabled member (Ingstad and Whyte 1995: 14). Simon describes this circumstance.

First of all, the bond with my family is closer. […] When I went in the wheelchair, they were everyday in the hospital. And you see them, you see them, you see them. You see the pain that you’re causing them and the bonds start growing. And now we are so tight with each other and to me that helps. Now I see them regularly, visiting, and they always call me and I call them too.

Simon’s relationships with family members persisted, and in his case the only change was that bonds actually grew stronger after his injury. He noted that his role as the eldest sibling remains constant and unchanged, as he does not feel any less capable to provide support for them than he did before.

My sister and my brother they really looked up to me. I’m the big brother. They can always come to me when they have a problem […] and that doesn’t change.

Simon also acknowledged that some families grow apart after the onset of disability. This did not apply to his family, however it described the situation of another respondent in this study.

I believe when these things happen to you, either you grow with people, or you grow away because some people cannot handle the situation. Some people can’t handle the wheelchair because it’s a big change and your whole life changes.

The physical change is not the only part of disability that is affected by a drastic change. The individual’s close environment changes with it, and although bonds between family members typically remain close, one respondent, Stefan, indicated that he became entirely isolated from his family members post-injury.

I have no contact with them. They don’t understand me. When I was sick in the hospital they didn’t come and so it hurts me. Doesn’t feel good.

His situation was certainly not representative of the rest of the respondents in this study, but it still deserved some consideration. Stefan repeatedly stated that his family did not understand his disability and so he had to stay away from them. When I asked him what he meant by that, he gave the example of his family not taking his disability into

consideration. For instance, when they visited him they moved objects out of his reach; they may not do so on purpose, but they do not seem to consider the implications for him.

They don’t think about my paraplegic and it’s not easy to live. So I lost my family a little. Most likely his family never before encountered and had to consider issues of disability and therefore do not realize the consequences of their actions. But Stefan interprets their behavior as intentionally hurtful and has distanced himself completely from them. By taking his disability for granted his family made his physical environment inaccessible. Placing objects out of his reach was to place him in certain situations where his disability was magnified. Distancing himself from those negative situations was his solution for achieving self-sustainability.

In some cases parents may be more lenient to their other children in order to avoid favoritism of the disabled child (Ingstad and Whyte 1995: 14). Louise became injured when she was 16 years old and the onset of her disability caused a rift between her and her younger sister. Conflict frequently arose between the two whenever their parents had to drive Louise to the hospital, or to school, or to sporting events.

So well in her eyes my parents spent a lot of time on me and not on her, so there was always a fight.

Louise could not get around on her own because of her injury and inability to drive and thus her parents tended to her needs, however her sister regarded it at favoritism. Onset of disability caused Louise to suddenly become more dependent on her parents than ever before, disrupting the relationship between siblings who were once quite close as she described. She did however mention that at the present moment her relationship with her sister is much better than it was in their teenage years. But interestingly she noticed that their bond was only restored once Louise met her husband and no longer lived with her parents.

Only one of the participants in this study is a parent himself and that is Jasper, a father of two daughters and a son. At the time of his accident his children were 13, 18, and 19.

Before I did everything. Before, I was always the ‘Big Papa’. And then suddenly I was the man in the wheelchair who didn’t do anything for them.

Because my father’s SCI affected my brothers and I growing up, I imagined I would see plenty of similar instances in the families I came into contact with. Furthermore, when I started this project I was expecting to explore the changes in households and the shifting family roles with the onset of disability, but since none of the other respondents are parents I had to shift focus. They were all relatively young at the time of their injuries, which may contribute to the fact that they had yet to start families of their own. With the exception of Jasper and Gertrud, the respondents in this study all experienced the onset of disability at 36 or younger.

Maartje is the daughter of Jasper, and the only respondent I had an in-depth interview with who did not have a disability herself. At the time of Jasper’s injury she was the youngest of the three children, with two older siblings who were at universities and no longer living at home. As her father suffered the consequences of his injury, and her mother tended to him night and day, it was as if she had no one to turn to for support and she felt neglected. She went on to describe how her grades in school suffered

tremendously and soon after she dropped out of school altogether. I assumed that her parents were disappointed to which she replied, “No, it was okay. They didn’t care.” This

was strange not only because parents normally would not be in support of their child failing and abandoning commitments, but also because her older siblings were

succeeding at universities. How could they not see such a drastic change going on with her? And is it possible that they did not care? According to Charmaz, taken-for-granted identities as companion and parent may dissolve (Charmaz 1995: 670). It is possible that Jasper and Annelinde were simply too preoccupied with dealing with Jasper’s injury to give Maartje the attention she needed, or it is possible that they felt guilty about not devoting enough time to her and did not want to punish her more by highlighting her failures in school. Or, perhaps it was a combination of both.

Although Maartje felt as though she was not given the attention she needed during that time, when I spoke to Jasper, he mentioned that the partner is the one who is not given enough consideration. He suspected that his injury was more difficult on Annelinde and his children than it was on himself, but he expressed an exceptional gratitude toward Annelinde. It was very clear that he appreciated everything she did to support him in the process of dealing with his injury and in getting his ‘life back’.

Every day she had to go to the rehabilitation center to see her new crippled man there, and realize again that she did not choose this […] the partner has the most to solve… She has to reach the top shelf, or pack their bags, and load the car… Every day the recurrent rituals of wound care or the care of feces and urine. An ode to the partners is definitely in place. People are always asking about the person who has the lesion, but never how it is going with the partner. Also in the hospitals they should give more attention to the partner. In that respect, I find it very clever the people who have no partner to persevere and make something of it. ‘Hats off’ to them.

According to Jasper, it is remarkable that people can experience SCI without the support of a partner. He does not know how he could have coped with his injury without

Annelinde.

At those times I got the most support and the feeling of having my life back from Annelinde. […] Amazing to have people who still like you, and give you the feeling that you are still needed anyway.

Jasper explained that his wife reassured him that despite his injury they could still do fun things together. He shared photo albums of their many vacations together, and proceeded to lead me outside of their house to show me their adapted vehicle. While we were outside he also showed me his hand cycle. He and Annelinde make the point of cycling every morning together. In this way, Jasper and Annelinde actively create continuity in

their relationship. In addition, combining social support with physical activity is a coping strategy. In a study of German speaking individuals with SCI (Rauch et al. 2013), social coping strategies facilitated physical activities, for example exercising together with others or with a partner, and also integrating physical activity into regular daily activities was a means of motivating the individual to be physically active (Rauch et al. 2013: 173). This study revealed that social support, as a way of coping, contributed to physical

activity (ibid: 174). Jasper’s fluid identity is reinforced through the continued social support he receives from Annelinde and his ability to partake in physical activity alongside her, despite their differing physical capabilities.

Once Louise began sporting competitively, the support she received from her parents changed as well.

Well I think they are my biggest fans now. They are proud of that. That I’ve reached such a high level and that I have the power to go on and to train and to go every day again, and again, and again and again.

Like Jasper, she also hand cycles, but she does so competitively. Her family takes great pleasure in going to watch her race and she appreciates their presence because she feels that she is making them proud. They are impressed by her ability to move forward after her injury and prosper through her engagement in sport.

3.4. Friends

Past reciprocity by friends does not always endure after an individual acquires a disability and social isolation emphasizes the disruption because people tend to situate themselves so deeply in their networks of social relationships (Charmaz 1983: 176). Individuals may also get the feeling that they have become a burden to their friends as a result of loss of independence and mobility (ibid: 188). After the onset of SCI

respondents may feel surprised at the negligence of the people who they once considered friends. When referring to friendships before the onset of disability, all of the respondents in this study reported varying levels of loss. Joep describes his experience with friends.

They say you have a hundred friends, but after the injury you have I think five or six very good friends who even after the accident stay coming to me. So those are the really good friends.

Gertrud mentions a similar experience.

Some I lost […] I have no contact with some friends. So there is a split […] you see who really is a friend […] people who are interested in you, they stay.

Gertrud reports that she is now able to see which of her friends were always truly interested in her and not just superficial things such as her social network. In addition to having lost friends, she reports that making new friends is also difficult. She indicated that none of her friends are disabled. The only friends she has are the few who knew her before her injury. According to Kerr and Thompson (1972) patients who are experiencing similar disabilities can help and support each other (Kerr and Thompson 1972: 101) however Gertrud did not get that impression while she was rehabilitated after her injury.

I think it’s very strange. In the rehabilitation center I also didn’t make friends. I think it’s because everyone puts all their energy in the training and they like people who can walk and help them. Probably I was also too focused on myself.

It was not so much a priority for patients to befriend other patients when their main concern was improving their own circumstance. Patients may find it more useful to make contact with the doctors and the nurses to take full advantage of the resources the center offers, rather than socialize. Gertrud sensed that SCI patients tended to be self-involved and perhaps even a bit competitive as they vied for the attention of medical professionals. However individuals may benefit from the emotional and social support they can receive from other patients who share similar experiences.

Viktor mentioned that he lost some friendships as well, however he made the point that changes in friendships are an inevitable part of life, regardless of his injury.

If I see my friends from now and seven years ago there’s a lot of change. But that’s seven years, so accident or no accident, the whole thing changes if you know what I mean. It isn’t that strange I think over time. It was a friend that I always contacted; there was always a way, if you know what I mean. And after my accident I didn’t have as much time to make contact with friends also, very busy with rehab and things. And I never heard from him again.

Viktor does not directly attribute the loss of a good friend to his disability, and instead he attributes he holds himself responsible for not taking the time to make contact.

Maintaining friendships is dependent upon reciprocity and making time for one another, so as Viktor’s concerns shifted elsewhere post-injury, he experienced a friendship

dissolve. He explained the occurrence with an emphasis on the continuity of it; such that all individuals go through changes and friends come and go over time.

Louise described how she actively reached out to friends after her injury.

Although she is not a competitive hand cyclist, she used to use her hand cycle as merely a means of getting around and maintaining her social life.

I did it to go to school and to go to friends or to visit the city center or something […] but [at the time] I didn’t know that there also was a sport of hand cycling.

Generally respondents experienced losses of past friendships, but in any case they managed to find ways to establish continuity in their lives through those situations nonetheless. In Louise’s case she actively made it a point to continue to go to friends despite her injury. Because she was still a teenager at the time of her injury, hand cycling gave her the ability to get around without being accompanied by her parents, which as I referenced above was a cause for conflict with her sister. In addition the hand cycle gave her an active role in the maintenance of her social involvements.

3.5. Significant Others

Viktor (43) was an enthusiastic bicyclist who acquired his spinal cord injury during a cycling race when he was hit by a car just 200 meters before the finish. At the time it was 2009 and he and his girlfriend had just decided to move in together. While Viktor was in rehabilitation, he began working with the company that would do the adjustments to his home. The goal was that his living situation would be fully accessible upon his release from rehabilitation. His girlfriend however did not like the idea of

adjustments to the house. He suggested a high-low kitchen, so that the both of them could cook and so that the kitchen counters would be at an accessible height for the both of them. His girlfriend thought a high-low kitchen did not seem necessary, and that it looked quite ugly. She offered to do all the cooking for him, and suggested that he use the

microwave in the case that she was not home. It was difficult for him to make her understand that an accessible home was a necessity for him and not a silly convenience; however, despite his efforts he was not able to convince her that they needed the high-low kitchen. After three months of disagreements concentrated around the accessibility of

the kitchen, he finally told her that it was not an option and the kitchen had to be made accessible for him. She consequently ended the relationship. Viktor felt as if he lost to the house, but he also believed that the end of their relationship saved him from further arguments on matters in which the solutions should be very simple. Months after the break-up with his former girlfriend he was released from the rehabilitation facility and went back to his original home in which he had lived for many years. In an interview that took place in his home, he gave me a tour of the house and showed me all of the

adaptions that had been made to it since.

According to Charmaz, “Wives of all ages willingly saw their husbands through crises, even when marriages were shaky” (Charmaz 1995: 669). This was not the case for Joep’s wife however.

I am now seven years with my girlfriend… But before my injury I was married. Two years after my accident we got a divorce. I think to myself, ‘Okay maybe it’s me, in the wheelchair’. But then I think if I wasn’t in a wheelchair maybe we would still have gotten divorced… but I’m still not 100% sure if it would have come down to that.

Because they were a younger couple and Joep thinks there was still a possibility for divorce even without the wheelchair, perhaps the pitfalls of his disability were enough to end their marriage.

But now I have a girlfriend for seven years, with the wheelchair, so we see and know each other in this way and I’ve always been in the wheelchair with her, so it’s better. It’s better if you learn somebody and they see I’m already in a wheelchair, than to have a girlfriend and then to have the accident and then to have the wheelchair… because then it’s too difficult for that girlfriend I think.

Based on what Joep said, his girlfriend entered into a relationship with him once he was already in a wheelchair and with the understanding of what that meant for the both of them; thus, their relationship has been successful. His accident and his wheelchair were detrimental to his past marriage because he had started the relationship as an able-bodied man, and then became disabled sometime in the middle, which may have been a

contributing factor to their divorce. His SCI put their marriage into question, as he was no longer the same man his wife first met. In contrast, he met his current girlfriend in the wheelchair. Joep’s speculation is in accordance with Kerr and Thompson (1972) in which they describe marriages as more secure when they take place after injury, as opposed to

marriages that take place before injury in which ‘the contract’ has been broken (Kerr and Thompson 1972: 100).

Social context is largely constructed around spouses or partners (Charmaz 1995: 669). Furthermore, loyalty and attachment in older long-term relationships usually remain despite the circumstances of disability (ibid), and to Gertrud’s relief, that was true.

Gertrud and her partner are an example of a relationship that did withstand the hardships that transpired after SCI. Once Gertrud’s ability to walk diminished and she needed a wheelchair, she and her partner had to move. It was not what either of them wanted, but it was something she needed. She found it necessary ask her partner if he indeed wished to continue with their relationship and wanted to move to an accessible home. They were not married but had been in a long-term relationship for more than twenty years at the time of her accident.

When we moved from the other place to this adjusted home, we didn’t want to but we had to. I asked him whether he really wants to go with me. Because I knew that with the wheelchair it’s a different life and I wanted to give him freedom to decide whether he wants to go together. But he decided he wanted to go with me so it’s very nice.

According to Charmaz, “Chronically ill people who adapt do not require their friends and family to construct a fictional present and mythical future with them” (Charmaz 1995: 675). This can explain the way Gertrud felt obligated to acknowledge her disability and give her partner the choice of whether or not to continue to pursue a future with her.

I thought, ‘I cannot, I will not, force him to go my way. I thought that through very much. And therefore I spoke to him and I think it was because of love that I wanted to give him free choice… that he is not a prisoner of me… that I am not forcing him like ‘Now you have to take care of me’ or something like that. I thought that if he chooses to go his own way, I would manage some other way to take care of me, you know? And I was a little bit surprised that it was no point for him, but I loved it. I was very happy that it was no question for him.

Although she uses a ‘scoot-mobile’, a rather large device compared to the average wheelchair, it did not inhibit her and her partner from having a wedding ceremony. She laughed as she described her wedding day to me. She married two years ago; she was dressed in white and sat in her scoot-mobile fully embracing her condition and corroborating her continuous identity.

Patrick, on the other hand, found continuity in his marriage in a different way. He mentioned that his involvement in hand cycling was beneficial to his relationship with his wife.

When I go to the gym or when I go hand cycling I train hard for a better result, so I focus on those things and that makes me happy and it makes my wife happy as well. Well she doesn’t get happy because I cycle a marathon but because I’m happy and living my life and we can both do our own thing again.

He points out that his wife’s happiness does not lie directly in the activity of hand cycling itself. Her happiness is more so in the fact that hand cycling gives him the ability to achieve independence and self-sustainability while carrying on an active lifestyle as he always did before his injury. One might say that involvement in sports is rewarding in more ways than just improving physical strength as physical activity can provide social benefits and sometimes it can also strengthen one’s personal relationships.

4. Continuity 4.1. Notions of Acceptance

Acceptance of disability is a topic that must be examined. In conversations with participants, ‘accepting it’ was a recurring phrase that kept appearing without any prompting from myself in the initial line of questioning. Nicholls et al. (2012) suggest that acceptance of disability can be understood as acceptance of loss, and that it is a process every patient must go through in order to learn to live with altered abilities (Nicholls et al., 2012: 1082). During preliminary interviews I asked participants for basic information, mostly biographical in nature: name, date of birth, place of birth, date of SCI, family demographic, relationships before and after, leisure activities before and after, daily routines, and goals. I did not specifically ask, “Did you accept it?” in the interviews but I noticed that almost every time respondents began to speak about life and activities post-injury, they would assert that they had accepted it. They would also provide a specific time frame to go along with it; this ranged considerably among participants, from a few days to several years. I noticed that respondents seemed quite proud if they could say to me that they ‘accepted it’ in a shorter time than other people did, or if they ‘accepted it’ faster than the average stint in rehabilitation. Only one person I interviewed objected to the concept of ‘accepting it’, but again, he brought up the topic himself. Respondents even reported that rehabilitation centers hosted 13-step courses to help them ‘accept it’, a way that the notion of ‘accepting it’ is ingrained.

Indeed, acceptance after the onset of disability may be an important part of

moving forward with life, but Kerr and Thompson (1972) point out that 100% acceptance is impossible to judge, although some patients may make excellent adjustments (Kerr and Thompson 1972: 94). There are no fundamental objections against the idea of ‘accepting it’, but there is no blueprint, so to speak, on how to ‘accept it’. And further, one cannot simply assign any quantity or designated time frame to which it must occur, because it is a continuous matter that is so much more complex than that. There is always some sort of acceptance at stake, since individuals actually live with the disability; some do this exceptionally well while some may struggle considerably for years and years with it. The point is that life changes and people will always react differently to their capabilities and