Development of Welfare Policies and Social Norms for People with Disabilities after WWII in Japan
The welfare policies for people with disabilities were first developed after WWII in Japan. The Law for the Welfare of People with Physical Disabilities was enacted in 1949. The enactment was significant since it was the first national policy for people with disabilities, and it separated welfare services for people with disabilities from welfare services for extremely poor people.
In the 1960s, the central government began to construct institutions for people with disabilities. Parents claimed that institutions were needed when they were no longer able to care for their children. Myers and Matsui (1984) mentioned that good quality service was provided in such institutions. In contrast, Hayashi and Okuhira (2001) indicated that there were many human rights violations in the institutions: poor medical treatment was provided for children who became severely sick, inappropriate surgeries were often performed on children with disabilities, male and female residents were often bathed together by male staff and toilet facilities for residents had no doors.
Some residents went on hunger strikes or even organized sit-ins to protest against the terrible treatment described above. Some of them organized to express their opinions collectively and formed some of the organizations that led the disability rights movement. Some members of the movement focused their protests against their parents. Families often created "barriers" against their children with disabilities when they tried to live independently or participate in other social activities (Hayashi & Okuhira, 2001).
In the 1980s, independent living was accepted as a goal or alternative to institutional living for people with physical disabilities. Disability rights organizations began to negotiate with municipal governments to obtain attendant service because residents began to leave institutions and live as part of the community. However, they were faced with limited personal care service. Although certain aspects of the movement originally developed in Japan, it was greatly influenced by the independent living movement in the United States after the personnel exchange as a result of the United Nations designation of 1981 as the International Year of Disabled Persons.
According to a survey by the Ministry of Health, Labour and Welfare (MHLW) (2009), the estimated number of Japanese people with disabilities is 7.238 million (about 5.6% of Japan's population) in 2006. The total number of people (children) with physical disabilities, various forms of mental retardation, or mental disabilities is 3.663 million, 547 thousand, and 3.028 million respectively. In total, 3% of people with physical disabilities, 25% with mental retardation, and 12% with mental disabilities were institutionalized. People with physical disabilities are in most need of an increase in income or a decrease in medical fees rather than the promotion of social understanding of disability issues, as is demanded by people with mental retardation. A public survey on the general attitude toward people with disabilities (Cabinet Office, Government of Japan, 2007) showed that 68.4% of the respondents helped or talked to people with disabilities. Although the rate increased by 16%, as compared to the results of a previous survey in 2001, 52% of the respondents answered that prejudice or discrimination existed against people with disabilities.
Major welfare services for people with disabilities were provided in line with the Services and Support for Persons with Disabilities Act enacted in 2006. This law aims at facilitating the assimilation of people with disabilities in community life through the nationwide systematic establishment of services and improved employment support for such people. However, there are many problems, including expensive fees for services and limited service providers in rural areas. Adults with disabilities who live with their families cannot receive many services as compared to those who live independently. This means that the current services are implemented in keeping with the norm that parents of people with disabilities or their family members are responsible for taking care of people with disabilities from childhood to adulthood.
Japan has an employment quota system for individuals with disabilities. The current legal quota is 1.8% for private companies and 2.1% for statutory corporations, the central government, and local governments. The MHLW (2009) shows that the actual employment rate of people with disabilities in private companies accounts for 1.59%, which has steadily increased since 2005; however, this remains at a low level as compared to the legal quota. Japan does not have an anti-discrimination act such as American with Disabilities Act.
Beyond Acceptance or Adjustment
Studies on the psychosocial state of people with physical disabilities have provided several theories like acceptance of disability (Wright, 1983), stage theory of adjustment to disability (Cohn, 1961), depression after sustained impairment (Elliot & Richards, 1999), and the Acceptance of Disability Scale (ADS) (Linkowski, 1971), which is widely employed in rehabilitation counseling facilities. The theory of stigma (Goffman, 1963), which has its basis in rehabilitation psychology, depicted people with disabilities as being devalued in interpersonal relationships.
However, researchers in disability studies have strongly criticized the aforementioned theories developed in rehabilitation psychology. Oliver (1990) mentioned that empirical evidence supporting stage theory is weak. According to Gill (2001), studies in rehabilitation psychology have shifted toward an impairment-centered framework, with a focus on the impairment of the individual's "inner" state such as emotion or well-being; they have underestimated the sociocultural context, although Wright (1983) "presaged" a social model research. She also pointed out that the research methodology has shifted from the analysis of "experimental accounts toward the operationalization and standardized measurement of constructs such as adjustment." According to Oliver (1990) and Oliver and Sapey (2006), rehabilitation professionals regarded disability as personal, medical, or tragic phenomena that required adjustment to disability. Thus, the aim of intervention is generally to transition people with physical disabilities to a "desirable" psychological situation. Standardized measurements like the ADS might be required to judge to the clients' progress. Moreover, Oliver (1990) pointed out that the concept of stigma helps describe the interaction between able-bodied people and people with disabilities, but is unsuitable for determining the background for such interaction.
Many studies qualitatively analyze the real accounts of people with disabilities, with a focus on their identity or meaning of their lives (King, 2004). Spencer, Young, Rintala, and Bates (1995) indicate that rehabilitation inpatients with spinal cord injuries struggle to build new identities as people with acquired disabilities while coping with damage and body dysfunction, to create a sense of continuity between pre-injury and post-injury life. Murphy (1987) and Emry and Wiseman (1987) indicate that people with acquired disabilities, on returning to the community, are often faced with experiences that they had not encountered prior to the injury. They are often unable to discuss disability and feel unaccepted. In an example, Murphy (1987) mentioned that the staff of a shop did not address a person with disability and instead asked the attendant accompanying the person what he wanted to buy, even though the person with the disability was the customer.
To examine the effect of a qualitative injury on one's identity or meaning of life, narrative or life stories that refer to the narrators' own interpretations of their lives (Gergen & Gergen, 1986) are essential for representing their experience of disability. Identity or meaning is not an inner state but is created through narratives (Frank, 1995). The study of life stories or narratives generally examines people's experiences holistically and does not attribute experience to individual variables such as gender, injury, age, or type of disability. Analysis of research participants' narratives, or autoethnography, helps in the diversification of the experiences of disabilities or dispels stereotypes about disability (Couser, 2002; Smith & Sparkes, 2008).
According to Frank (1995), the narrative of people with illnesses or disabilities can be classified into three categories: restitution, chaos, and quest. We regard the restitution narrative as a medically based model in which the person tries to seek meaning to life despite the impairment or disability that must be "conquered." The quest narrative, defined by the person's belief that something is to be gained from the illness experience (Smith & Sparkes, 2004), should be further explored. People with disabilities structure their life stories in a manner that carries personal significance; however, these stories may not always be consistent with the knowledge of medical professionals (Kleinmann, 1988). For instance, Oliver Sacks's autobiography is a quest narrative for finding meaning from his injury, rather than a restitution narrative of a medical case study (Cassuto, 2002).
Similarly, this study focuses on the experiences of those who have recovered from an acute, unstable medical condition after injury and who have engaged in medical or vocational rehabilitation. We consider them to be marginal — somewhere between people with disabilities and able-bodied individuals — though critical malfunctions at the impairment level have been stabilized. People with acquired disabilities often swing back and forth like pendulums between the non-disabled and the disabled aspects of their selves (Yoshida, 1993). Nochi (2000) finds that some people with traumatic brain injuries considered their impairments temporary, even when they recognize them as not easily curable. People with disabilities, who often ask to try social activities as far as possible accept the others' support, are concerned about the degree to which they should seek others' support (Phillips, 1985).
Research suggests that we should also examine masculinity and the relationship between disability and manhood. Morris (1993) suggested that gender perspective was required because previous studies on the experience of disability were based on the tacit assumption that men with disabilities were researched. Robertson (2004) highlighted that the study of manhood in disability studies was not enough, although the gender perspective became strong. Sparkes and Smith (2002) showed that former rugby and football players with spinal cord injuries experienced the loss of their masculine and athletic identity. Ostrander (2008) indicated that men with violently acquired spinal cord injuries struggled with the change of their sexuality.
In this study, we examine how people with acquired disabilities establish interpersonal relationships, with a focus on their relationships with people with similar disabilities. Other people with similar disabilities teach those who have recently acquired disabilities how to live with their disabilities. They often learn how to manage everyday life and to cope with discrimination. As is obvious in the current disability movement, people with disabilities often share common needs with each other and develop a collective disabled consciousness or social identity as people with disabilities (Yoshida, 1993; Mann & Chad, 2001). However, those who have just sustained an injury may be unwilling to befriend people with disabilities, as Goffman (1963) indicated. In brief, we examine the experience of men with acquired disabilities by using a qualitative analysis of their life stories.
Participants and Recruitment
The participants comprised 14 men with spinal cord injuries (3 paraplegics and 11 quadriplegics) who had acquired their disabilities up to seven years previously. The participants' background information is presented in Table 1, with names changed to protect their privacy. The time period ranged from 1 to 7 years; the average period was approximately five years. The age of the participants at the outset of the study ranged from 20 to 31 years; the average age was 26.5 years. Eleven participants had been institutionalized and the rest lived with their families. The most common causes of disability were traffic accidents, sports accidents, and falls from heights. Japanese identification cards indicated a 1st grade severity of disability for every participant.
I considered spinal cord injury to be suitable for this study of physical disability because this impairment does not involve either cognitive disorders or other brain injuries. Given the objective of the study, people with severe psychological problems or women with spinal cord injuries were excluded.
I recruited participants through local spinal-cord-injury support groups located in the western region of Japan. When contacting the leaders of these groups, I stated that I was interested in the life stories of people with short-term spinal cord injuries with respect to post-injury life-changes. I also requested their assistance in finding appropriate participants for semi-structured interviews who met the following criteria: (1) The age at occurrence of injury was around 20 years, because epidemic data indicated that the peak age of spinal cord injury occurrence was from the late teens to the early twenties, (2) the individual was willing to discuss his or her experiences with regard to spinal cord injury, and (3) the time elapsed since the injury was 2 — 3 years, which would allow for the analysis of life-changes occurring in the short term as a result of physical disabilities.
I provided full information to the group leaders regarding the purpose of the study and the privacy protection methods used, assuring them that participants were not required to discuss any topic that would cause discomfort. Furthermore, they were assured that the interviews would be published as academic articles only after careful consideration of the privacy of the participants. The ethics committee of our university approved the study protocol.
The average duration of disability was a little longer than that in the initial recruitment criteria because it was difficult for the group leaders to find participants who met all the required criteria. It is possible that the group leaders felt that people who had sustained spinal cord injuries 2 — 3 years ago had severe psychosocial issues and would hence be unsuitable for this study.
I conducted two semi-structured interviews with each participant. Each interview lasted approximately 90 minutes. Before beginning each interview, I completely explained the research aim and the study's privacy protection policy. I also provided relevant documentation, although all the participants seemed to understand these matters at the time of the initial contact. I also emphasized to the participants that they were not required to discuss any topic that was inconvenient or uncomfortable and that they could halt the interview at any time if they so wished. At the beginning of the first interview, I asked each participant about his background: Family members, main income, education, employment, and welfare service, if applicable.
I requested the participants to describe the passage of their post-injury lives, including the period of injury, hospitalization, post-discharge, and current life. Additionally, they were asked to extrapolate a trajectory of life without disability. The interview protocol was based either on that of my previous study (Tagaki, 2004) or on autobiographies of people with acquired physical disabilities. Their stories did not progress in a chronological order as the sequence was broken by voluntary talking, all of which was important and recorded.
During the second interview, I asked the participants to elaborate on the main topics discussed during the first interview. If the participants started to discuss experiences that they had not mentioned during the initial interview, I asked them to relive the experience and I paid attention to the chronological order of the events. At the end of each interview, I asked the participants to comment on the experience of the interviews, asking whether the interviews made them feel uncomfortable.
It took approximately two years to complete all interviews. Verbatim transcriptions of the interviews were prepared. To ensure accuracy, two individuals (an experienced transcriber and me, the interviewer) were involved. There were 28 interviews in all; when transcribed, each was between approximately 25 and 46 pages in length. Because of the highly personal nature of the interviews, I stored all transcriptions in a locked cabinet.
After all the interviews were completed, data analysis was undertaken using the KJ method (Kawakita, 1967), a qualitative analysis method developed in Japan, in the following manner. First, I carefully reviewed the transcripts to gain an overall sense of the participants' life stories. Second, I extracted approximately 200 episodes from each transcription, an "episode" being a basic semantic unit of analysis extracted from three or four sentences. For example, these episodes revolved around rehabilitation efforts to ensure, overcome, or maintain independent living; overcome job difficulties; maintain relationships with friends with disabilities; maintain interests in issues pertinent to people with disabilities; and overcome care hardships and mobility/wheelchair disadvantages. Third, I provisionally grouped and organized episodes pertaining to a particular participant and made comparisons among them. After completely analyzing a particular participant's data, an analysis of the next participant's data was initiated. Fourth, I developed a chronological table of post-injury life for each participant by arranging the episodes under different categories of post-injury life.
For each participant, comparisons within the set of episodes continued while considering life-changes on a chronological timeline of pre-injury, injury, post-injury, and current life. In particular, with regard to the effect of injury on life after discharge from the hospital, processes of change in the participants' life patterns were revealed by analyzing the sets of episodes. A pattern of life comprises one or two major elements (Levinson, 1978), e.g. job, rehabilitation vocational training, recuperation at home and activity in groups of people with disabilities. Life patterns constitute an understanding of daily activity that is similar to that used in the social welfare service system in Japan. Moreover, in the current study, the "subjective" connotation of life pattern was considered an "interpretation." In the analysis of life stories, the participants' processes of change, which pertained not only to events or life patterns but also to the implications thereof were deemed worthy of serious consideration. The interpretations were also categorized using an inductive method.
To capture the events of the participants' current lives, I developed categories that appeared to connote positive views of their current lives, categories that represented the subjective connotations of disadvantage stemming from disability, and the individuals' strategies in coping with disadvantages. All the categories were also analyzed with the inductive method.
Two experienced supervisors in qualitative research examined the analytical process to verify that the process was both logical and suitable for the data captured. The analytical framework of the passage of life after injury to current life is presented in Table 2.
|Name||Current age||Severity||Injury cause||Injury age||Injury duration||Employment||Marital status||Family||Mode of transport||Social assistant|
|S1||24||Quadriplegia||Injury cause||17||7||Unemployed||Unmarried||Institutionalized||Public transportation||Required|
|S2||29||Quadriplegia||Sports accident||22||7||Unemployed||Unmarried||Institutionalized||Public transportation||Required|
|S6||29||Quadriplegia||Traffic accident||23||6||Unemployed||Unmarried||Institutionalized||Public transportation||Required|
|S7||27||Quadriplegia||Sports accident||22||5||Unemployed||Unmarried||Institutionalized||Public transportation||Required|
|S8||24||Quadriplegia||Sports accident||19||5||Unemployed||Unmarried||Institutionalized||Public transportation||Required|
|S9||20||Quadriplegia||Sports accident||17||3||Unemployed||Unmarried||Institutionalized||Public transportation||Required|
|S10||25||Paraplegia||Sports accident||22||3||Unemployed||Unmarried||Institutionalized||Public transportation||Required|
|S11||31||Quadriplegia||Traffic accident||25||6||Unemployed||Unmarried||Institutionalized||Public transportation||Required|
|S12||24||Quadriplegia||Sports accident||23||1||Unemployed||Unmarried||Institutionalized||Public transportation||Required|
|S14||25||Quadriplegia||Traffic accident||21||4||Student||Unmarried||Parent, brother||Public transportation||-|
Note: Each participant belonged to the 1st legal severity grade of disability
|During hospitalization||After discharge||Current life|
Powerlessness from incurability,
Recovery from powerlessness and from the shock of incurability by others' encouragement.
Relationships with people with similar disabilities,
Job importance, Personality traits from pre-injury life.
Awareness of disability issues,
Sharing a closer relationship with others,
Happiness compared to others,
Bodily function control,
Desire to be accepted as an ordinary person
Desire to be able-bodied.
Most participants recalled having spent ordinary lives and not encountering any particular problems in their pre-injury life. S6 said that he had enjoyed his job in a large and well-known company. S9 reported that he had passed an entrance examination for engineering school without having to do any hard work and that he enjoyed engineering class. S11, as an exception, stated that his depressive feelings at failing an entrance examination in his pre-injury life were more negative than those during the injury itself.
All participants had sustained their injuries in either car accidents or sports or swimming accidents. Most participants stated that they did not remember the circumstances of their injuries well because they had fainted; those who had not fainted could not understand what had happened to them. S2, who had sustained his injury while snowboarding, did not believe his spinal cord was damaged at the time of injury.
Powerlessness from incurability
The participants' life patterns revolved around symptom stability and medical rehabilitation. The individuals believed their injuries to be mild — like a broken bone. They worked hard and continuously during rehabilitation in the hope of full recovery. S12 did not even know that there were injuries from which a person could not recover. Three individuals were torn between two emotions: Hope for recovery and desperation born of potential incurability. For example, S2 said, "I had tried to expect a full recovery even though incurability was often on my mind."
The participants recalled feeling deeply shocked and powerless on discovering that their impairments could not be cured from explanations provided by doctors and the situations of other patients,. Both S5 and S12 even wanted to commit suicide; they could not imagine what living with a disability would be like and could not think of a strategy for life in a wheelchair. They thought that they would have to spend the remainder of their lives in bed, far from family members or friends. S1 felt left out and experienced a sense of abandonment a few years later when he learned that his schoolmates had found jobs. He felt he could do nothing while his schoolmates went on with their lives, because he had to stay at the hospital. S3 felt that he could neither have sexual relationships with women nor start a conversation with one.
Recovery from powerlessness and from the shock of incurability by others' encouragement
However, all participants slightly recovered from the disappointment and sense of powerless as other people with similar disabilities informed them about the recovery process or about ways to manage personal needs like eating, toileting, or clothing. The newly-injured patients were told that they could establish a goal of medical rehabilitation and they regarded inpatients as rivals in terms of improvement of personal needs. S3 said, "I worked hard at the rehabilitation program because many people who had more severe spinal cord injuries than I did had training. I can move my hands or fingers at my will, which is more than they can do. I must not give up." For S2, S4, and S13, age similarity as well as the same kind of disability were necessary for them to feel encouraged. S2 developed good friendships with patients who had similar disabilities in similar age.
S2: The bonhomie in the inpatients room resembled that at school trips. …Without friends with similar disabilities of a similar age group, I would have been more disappointed. ...We referred to our injuries in good humor because people with similar disabilities are mutually empathetic and do not feel hurt themselves.
S10 stated that he thought it was impossible for him to marry with "such bod". But he gained confidence that he could do after he had seen a man with similar disabilities who had been married. Besides others with similar disabilities, S4 appreciated his family members and his friends from his pre-injury life, who treated him without pity.
The life pattern after injury comprised symptom stability, medical rehabilitation, and recuperation at home because most of the participants were either institutionalized or had just been discharged from institutions.
The participants sought to improve their personal needs for the purpose of obtaining a driver's license, achieving independent living, or returning to school or employment. As time from the injury progressed, they often found that there were more and more activities that they could do with some assistance. Participants also understood how to ask others for assistance on the street. They found that other people are reluctant to help people with disabilities, often because they do not know how help. S2 found that he would be able to live life in a wheelchair even though his lower limbs were paralyzed. S12 became more familiar with being in a wheelchair, compared to the way he felt during the hospitalization period.
S12: I could not think of myself using a wheelchair. The image of me standing on my own feet was stronger than the image of me sitting in the wheelchair. But, I have now begun to accustom myself to the image of me in the wheelchair; the sense of ambiguity towards the wheelchair has lessened, although I do not feel yet that the wheelchair is my feet.
Participants like S3, who left the institution and went to a specialty school, recognized that the self-management of health care and medication was much more important in community life than in institutionalized life.
S3: I often missed class because I would lose bowel control. ...At the hospital and at the facility, there were many people with similar disabilities, so I took the same kinds of medication that they did. However, outside, I have to take my own medication and manage my physical condition myself.
Relationships with people with similar disabilities
As is often the case with hospitalization, many of the participants received lessons or encouragement from people with similar disabilities while they were in the institution. They considered this advice more useful than that from their medical doctors because it was based on real-life experiences of wheelchair life. S6 reported that a friend with similar disabilities had told him of an effective rehabilitation method and the expected scope of improvement. S10 stated that he wanted to be able to drive his wheelchair as fast as his roommates with spinal cord injuries could.
S6: At the institution, I saw the everyday life of roommates with similar disabilities, who did various activities themselves. If it were not for them, my efforts would have been faced with limitations and would have been ineffective. It would have been difficult for me to learn the concrete process of reaching the rehabilitation goal that I had in mind.
S12, on the other hand, said that he did not want to adjust to the lifestyle of people with spinal cord injuries in institutions:
S12: People living in an institution have a strange sense about their lives. For example, many friends eat their meals while they are urinating into PET bottles through catheters. Yes, I understand that going to the toilet in a wheelchair is troublesome. But, such behavior must be crazy for people with "normal" sense. We are neither dogs nor cats. However, I might behave similarly in the same situation.
The participants recognized the diversity among the people with similar disabilities whom they met in the institution. S6 mentioned that, as is the case with life in society, there were conflicts or quarrels in life in the institution.
Individuals, on leaving their respective hospitals and institutions, indicated difficulties in getting jobs. S3, who could easily find employment at a daily goods company, said that he did not have good relationships with his associates because of toileting issues, even though his boss was satisfied with his job performance.
S3: I often missed work because of my loss of bowel control and could no longer keep up… I was eventually assigned to monotonous duties such as pressing seals. There had always been a distance between myself and my coworkers and work became monotonous; so, I quit.
Personality traits from pre-injury life
Some participants spoke about how certain values or personality traits had remained unchanged despite their disability (e.g., optimism, carefulness, putting forth best efforts for favorite things, job importance for men, and dislike of being behind anyone). In addition, S12 stated that he had not consulted others about his distress, and he maintained his belief that a man must have job. The participants attributed improvements in their personal needs to their unchanged personality traits. Other participants said that their personalities were influenced by post-injury life. S1, for example, said that his optimism was strengthened by improvements of personal needs. He said, "This optimism is also owed to confidence that I have in my improved mobility since the injury." S7 said that his personality was well-suited to requesting assistance from people around him. He said, "Encouragement from my family, friends, and the rehabilitation personnel coincidently 'fit' with my personality."
The analytical framework of current life consisted of its positive aspects and connotations of "disadvantage of disability." These were grouped into the following categories within the framework.
Awareness of disability issues
S2, S6, S9, and S12 stated that they had recognized the disability issue as something close to them, compared to their pre-injury lives. S2 mentioned that he was now living more happily because earlier times had not been so kind to him.
S2: "Currently, attention is paid to welfare because of an aging society. Therefore, it is fortunately an age in which people with disabilities can now live easily. I have heard there was bullying of people with disabilities before I was born."
Sharing a closer relationship with others
S1, S2, S4, S7, S8, S11, S13, and S14 each reported becoming closer to others. S1, S2, S4, S7, S8, and S11 each said that they appreciated the kindness of others, as well as the sympathy of family members. S1 appreciated the presence of others because he had to live with their assistance in a socially vulnerable position. S14 also stated that he had become talkative because he had to ask strangers for assistance.
Happiness compared to others
S2, S5, and S6 each said that his current life was more fulfilling with less stress than those of other people without disabilities. S5 said that he had become more active than in his pre-injury life. S5 said, "Before my injury, everything was too much trouble, but now I have a positive attitude. I'll take on a challenge that looks achievable (with a little effort)." S6 stated that he appreciated his current happiness compared to that of people without disabilities or people with more severe disabilities.
S6: Compared to someone who is suicidal, I am relatively happy.... Because I sustained an injury, ordinary things make me happy. Without this injury, I probably would not have appreciated marriage that much,
Bodily function control
One of the participants' interests was in how to control bodily function with the help of others. S6 said that he was glad to have improved his bodily functions compared to a certain time after his injury.
However, S1, S2, S3, S4, S5, S7, S8, S9, S10, S11, and S14 said that they experienced hardship on account of their mobility problems. It stands to reason that this is one of the most important issues for people with mobility impairments. S1 said that he strongly felt like a person with a disability after he began to date a girlfriend. He said:
I can take my girlfriend near the beach, but it's impossible to go to the beach or the sea on my own. If my girlfriend says she wants to sit in the front seats at a theatre, we can't go together. I can see better from the seats at the very back.
S3 stated that it was impossible for him to play on the beach with his dog. S8 felt irritated because he could not move his body as he intended. S4, who started to live with his family, said, "At home, it's just me and my family, so if I'm on my own, I have to wait for them to come back." S6 said, "I cannot do normal things like carrying heavy luggage or driving a car like other men do." In addition to mobility problems, S7 and S10 said that they found it difficult to maintain other bodily functions such as body-temperature regulation, urination, or bowel elimination.
S11, S12, and S14 mentioned that disadvantage or anxiety about their disabilities did not stem from only their injuries. S11 said, "The most difficult thing I face is not being able to reach things that are placed high up. But everybody has anxiety. Injury or disabilities are just some of the anxieties that people experience." S14 also often experienced mobility problems, but he understood that they were based in dominant social norms for the able-bodied. He said "Able-bodied people are always regarded as the standard for everything. For example, there is no way that a wheelchair can get through an automatic ticket gate."
For the participants, asking for support was important but troublesome. S2 said, "Older people are more reluctant to help people with disabilities than younger people. I asked an older station staff member to help me to ascend stairs in the railway station. He refused and gave me the excuse that he had backache. I became really angry with him."
Desire to be accepted as an ordinary person
The participants often faced with stigma, labeling, or prejudice; they hence had difficulties in establishing interpersonal relationships. S3, S7, and S14 felt that their disabilities did not influence their lives. They considered disability a normal thing. S14 said, "My sitting in the wheelchair doesn't become more special compared to able-bodied people because I played freely in the wheelchair after I left hospital."
S1, S9, S13, and S14 said that they had many difficulties in establishing good relationships with friends. S9 and S14 felt that they were "left behind" by similar-aged friends. S14 said, "I have fewer friends of my own age outside university. If I had a part-time job, I would have friends of my own age."
S1 and S13 were reluctant to have intimate relationships with female friends. S1 said,
An able-bodied person can do more for his girlfriend. Initially, I didn't feel inferior (to people with disabilities); however, as time went on, I did. When there was something we couldn't do, I got to thinking that it is because I am in a wheelchair.
However, S1 also said, "I'm really no different from an able-bodied person — I just use a wheelchair." S13 said, "When someone (of the opposite sex) keeps their distance because I'm in a wheelchair, I don't want to get to know them better."
S5, S6, S9, S12, and S13 faced with stigma that came from the social labeling of a "disability." S12 tried to keep a distance from the disability atmosphere or culture in the institution because he did not want to be a "person with a disability."
S12: I started to be influenced with the behavior and values of people with disability. I began to urinate without any reluctance, as other people with disability. I tried to maintain contact with friends living outside this institution and share similar topics with them. I did not want to adjust to the atmosphere or culture inside the institution.
S10 was unsatisfied with care workers because they always forbade what he wanted to do, such as obtain a car license. He said, "There are some things that I want to take responsibility for, even though the staff at the institution prevents it. The care workers told me that I should stop driving, but my reaction was why is any concern of yours? It should be my concern."
S11, S12, and S13 said that they experienced many difficulties in finding satisfactory employment. They considered a job to be part of the essence of a person; therefore, they considered unemployment to be excessively stressful experience. S13 attributed unemployment to his low level of education as well as to his disability. He said, "I did not get a high school diploma; therefore, I cannot find good a job opportunity."
S11: I absolutely have to work too.... I can't be psychologically satisfied unless I work (as well as pursue my interests) because it is very important to strike a proper balance between one's work and one's interests.... I feel like I'm inferior and that I'm missing the boat as job offers are targeted at 35- and 36-year-olds. The older I get, the more difficult it will become to find a job.
Desire to be able-bodied
S4, S9, and S14 said that they would be able-bodied people again, if possible, because they thought that all the problems that they had would then end. S9 said, "Even now, I wish I could be able-bodied again. I don't want to give up on it. I don't need to give up. Once in a while, I'll see someone moving around in a lively manner and feel that I want to run or something."
First, the participants reiterated that they could manage their lives with injuries. They coped well with the problem of bodily function control, and they considered that there were no differences between people with disabilities and able-bodied people even though they faced problems in social activities like interpersonal relations or employment. S3, S7, and S14 emphasized that their current lives had few inconveniences due to their disabilities. S2, S5, and S6 each said that his current life was more fulfilling with less stress than that those of able-bodied people. Participants like S11, S12, and S13 told that disadvantage or anxiety from their disabilities did not stem only from their injuries. For S11, the disadvantage of a disability was just one of many normal anxieties that a person has. S13 mentioned that his low level of education was a cause of unemployment apart from his disability.
After the discussion, a sort of consensus emerged: The participants regarded their difficulties equivalent to those experienced by able-bodied people. Through such beliefs, the individuals strongly wished that they would be accepted as people who are no different from able-bodied people.
Second, participants such as S2, S6, S9, S12, and S14 began to recognize the disability issue as a possibly social one. Pierret (2003) insists that studies on illness experience should examine the relationship between personal experience and the socio-cultural context. S2's narrative is worth special consideration: He said that he was now happier, because earlier times had not been so kind to him. His narrative indicates that he accidentally came to live in a "happier time." The participants understood that their lives were greatly influenced by disability services and the social awareness of disability, and that they could not control the social context. S2 seems to appreciate the fact that his life is in good social context. This situation is considered a mediator between a person and society.
These results lead to a reconsideration of current welfare policies such as self-determination. Although self-determination should be taken seriously, making decisions independently means taking responsibility for the outcomes. With matters of contingency, we should avoid such a burden.
We should refer to S14's narrative, which states that our society is based on the norms of able-bodied people. S14 clearly stated that his disadvantage was a socially constructed one, not one caused merely by bodily dysfunction. S14 had lived in the community longer than other participants and he had a very active social life that included college and trips. S14's narrative implies that he started to forge a new identity after being discharged from the institution and that participation in many social activities led to his awareness of the social construct of "disability."
Third, the participants had come to place greater importance on relationships with people with similar disabilities in hospitals or rehabilitation institutions. The participants went through the process of developing a disability identity (Gill, 1997). They recognized the sameness of experience of disability and their belonging to the disability community, and they felt comfortable "coming home" to the community (Gill, 1997). The participants owed their recovery from powerlessness and from the shock of incurability to practical advice or encouragement from people with similar disabilities. They considered some of that advice more useful than advice from their medical doctors because this advice was based on real-life experiences of wheelchair life. They stated that this practical advice could not have been given by able-bodied professional therapists, which implies that people with disabilities can share "knowledge" among themselves that is different from that offered by the professionals working with them.
Experience-based advice is not always accepted by patients who have recently acquired disability. In hospitals and institutions, there may be "novices" and "seniors" among people with similar disabilities, based on the differences in injury duration. "Senior" people were accepted as role models by people who had only recently sustained injuries. The knowledge transferred from "seniors" to "novices" and this act of knowledge-sharing could lead to a stronger social identity of people with spinal cord injuries.
However, we should consider that people with disabilities might be afraid of being socially labeled as "people with disabilities," even though they recognize that people with similar disabilities share the same anxieties. A typical case is S12, who tried to distance himself from the disability atmosphere or culture in the institution because he did not want to be a "person with a disability." A similar situation was referred by Gill (1997). On the other hand, he began to sympathize with the difficulties or challenges associated with urination of his friends with disabilities. He tried to draw distinctions between people with disabilities and able-bodied people, as he felt comfortable with life in the institution, surrounded by people with similar disabilities. He struggled with great ambivalence towards his identity. Our participants showed neither attachment for "disability culture" nor self-images that were integrated with disability identities that Gill (1997) suggested, probably because many participants were institutionalized and had participated in restricted social activities.
Fourth, some participants like S1, S3, S6, S10, and S12 struggled with their former manly image. Even though they did not refer to physical strength as the former rugby football player with SCI did, they reported that their injury affected their employment prospects and their intimate relationship with women. For example, S6 believed that carrying heavy luggage was a conventional role that a man should play. They did not develop an alternative to their lost masculinity.
Fifth, participants' beliefs that their personalities had remained unchanged despite their injuries are worth consideration. Some participants attributed improvements of personal needs to their unchanged personality traits. S1 felt that his optimism was strengthened by improvements of personal needs. Naturally, the participants could have been influenced by a social-education discourse that holds that people with acquired disabilities should not change after sustaining an injury.
We should not judge whether their personalities really did remain unchanged; we should consider this as a sense of coherence (Antonovsky, 1993). According to Lustig, Rosenthal, Strauser, and Hayes (2000), the development of a sense of coherence is important for people with acquired disabilities. Our results implied a connection between the participants' pre- and post-injury lives; they also diminish the gravity of the actual dramatic changes in bodily functions or social activities and highlight matters such as human relationships and employment. Judging from S7, who stated that his personality was suited to requesting assistance from people around him, his meaning might reduce the sense of indebtedness to receiving care and may help maintain self-sufficiency and coping with problems in continuity. In addition, the receiving of care might have implied to S7 that there are unchanged aspects in his current life despite the gravity. Even S12, who had the shortest duration of disability, felt that his personality had remained unchanged. They would not find the personal strength to solve their problems without an unchanged personality.
In rehabilitation psychology, referring to experiences in pre-injury life is not recommended, as it is an indication of maladjustments to acquired disabilities. However, our discussion indicates that the reliving pre-injury life generates behavior that is required in living with disability. As Mattingly (1994) suggests, narrative can lead to behavior.
This study has certain limitations. I did not consider individuals who were unable to narrate their stories, due to a reluctance to share extremely negative experiences. Additional research, in collaboration with clinical practitioners, will be required in the future to examine such individuals.
Based on the results, the participants, as a group, did not overestimate the influence of their disabilities; they attributed their perceived disadvantages to things other than their disabilities. To relieve their sense of psychological loss, they stressed those things that had not changed from their pre-injury lives, such as their personalities. The participants stressed their similarity to able-bodied people, and made light of their state of disability, ultimately considering their disabilities as "normal." It could be considered that as the participants proceeded to live in a variety of life contexts, the implications of their disabilities became more complex or multidimensional.
Problems related to impairment tend to become much more perceptible after discharge from the hospital. People whom individuals with disabilities encounter tend to show some prejudice toward them, compared to medical staff or in-patients in the hospitals. However, community life should be an opportunity to recognize the multidimensional aspects of disability, as had been the case with S14. This recognition should help in establishing a new identity.
Relationships with people with similar disabilities might contribute to the development of their social identities as people with disabilities. Even though people with disabilities acknowledge the dichotomy of people with disabilities and able-bodied people, they also recognize the heterogeneity of people with disabilities. This recognition helps them cope with stigma or negative stereotypes in society.
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