D corporation

The internship program is funded by D corporation in Japan, which embarked on a campaign to support persons with disabilities beginning in 1981, the year the United Nations proclaimed as the International Year of Disabled Persons. The A Foundation, established by D corporation in 1981, organizes two major training programs for youths with disabilities. One of these training programs, which was initiated in the 80s, provides Japanese youths with disabilities with opportunities to study abroad and prepare themselves to become community leaders when they return. Another program, which is the focus of the present study, invites youths with disabilities from the Asia-Pacific region to Japan to learn welfare systems, Independent Living (IL) movements, assistive technologies for the disabled, and so on, to become leaders in their home countries. Since this training program was started in 1999, more than one hundred youths with disabilities from 25 countries and regions, from Tajikistan to Papua New Guinea, have completed the program.

Study design

This study used a mixed method and spanned a four-year period. The first, qualitative ethnographic part of the study was initiated in September 2012, when seven trainees arrived in Osaka to participate in the Leadership Training Program for 10 months (until June 2013). The first author, Iwakuma, carried on the pilot ethnographic study in another group of six trainees from the Asia-Pacific region, who arrived in Osaka in the following year (September 2013) to start their internship. Semi-structured interviews were conducted based on information obtained from the previous year's study.

In September 2014, based on information obtained from the ethnographic study, a survey of another group of six trainees with disabilities was conducted, as well as semi-structured interviews regarding the trainees' very first impressions of and experiences in Japan. The present report concerns the qualitative part of the study conducted from 2012 through 2014. This study received the approval of the Ethics Committee of Kyoto University.

Participants

A total of 14 trainees with disabilities who stayed in Japan for the Leadership Training program participated in this study. They were recruited by co-researchers who worked at the Japanese Society for Rehabilitation of Persons with Disabilities (JSRPD) and were in charge of coordinating training for trainees.

Of the 14 trainees, 11 with physical or visual impairment were interviewed; some were interviewed multiple times (at the beginning, during, and end of the program). The remaining three trainees, who had hearing impairment, could not be interviewed without a sign interpreter, and thus, these trainees were only observed ethnographically. Participant background information is summarized in Table 1. All the individual names used in the paper are pseudonyms.

Data analysis

The interviews with participants were recorded after orally obtaining an informed consent. Transcribed interviews and field notes were analyzed using the grounded theory method (Glaser and Straus, 1967), which is used in many fields, such as nursing, education, and communication studies. The present study used this method as it is the most appropriate when exploring "the social processes that present within human interactions" and "the richness and diversity of human experience" (Streubert & Carpenter, 1995, p. 145).

Data were collected and analyzed simultaneously, both in Japanese and English, while data were continuously integrated into codes. Open coding was initially used to identify descriptions related to the participant adjustment process. Coded data were then reviewed further to unify interrelated codes and sub-codes to generate core themes. Extracted initial themes were reviewed to identify relationships among data. The first author (Iwakuma) occasionally consulted two JSRPD staff members, both of whom were disability training experts, for the validity of data analysis.

Annual program schedule and training

The program starts in September when trainees arrive at Kansai International Airport in Osaka. For the next three months, trainees receive intensive Japanese lessons in Tokyo, where the office of JSRPD is located. In December, they complete group training in Tokyo, participate in a ski camp in the northern region of Japan, and spend New Year's Day with Japanese host families. More individualized training starts in February through May, during which trainees are able to customize their own program based on their interests and needs and stay in various places in Japan. In June, they return to Tokyo to prepare for the Presentation Day of Results before returning home.

The individualized training programs that trainees undertake following the three months of intensive Japanese lessons in Tokyo are truly diverse, as they are tailored to individual interests, concerns and aptitudes. The experiences gained often have a major impact on the trainees' subsequent activities. Because individualized training takes place at IL Centers and offices and facilities for individuals with disabilities throughout Japan, trainees set out for these various locales on their own to receive training, all the while encountering language barriers and cultural differences. Relationships fostered with Japanese individuals with disabilities represent a key asset for these Asian trainees, who maintain these relationships even after the training ends and they return to their home countries. 2

While individualized training was tailored to the trainees' individual interests and concerns, group training provided opportunities for trainees to learn together, which created a space for the valuable cross-disability experience of living and learning alongside people with different medical conditions and disabilities. For example, the group training program was organized in such a way that trainees with visual impairments pushed the wheelchairs of trainees with limb disabilities when needed, while hearing-impaired trainees served as guide helpers for visually-impaired trainees, and trainees in wheelchairs provided sign-language interpretation for hearing-impaired trainees. This experience significantly impacted the trainees' cross-disability communication, which is discussed later.

General adjustment to Japan (e.g., food, health, bathing)

From September to December, the trainees spent their time learning Japanese and adjusting themselves to their new environments, including the weather, food, mobility, and anything associated with daily activities. This process is referred to as general adjustment (Black, 1988). Since many of the trainees came from countries and regions warmer than Japan, this adjustment was one of the first hurdles to overcome. For example, one day, a trainee from a Pacific island missed a Japanese class due to diarrhea resulting from dietary changes. According to a coordinator, "once they settle down in Tokyo, some become sick. Later, when winter comes, others start to have skin problems due to the dryness, especially those from humid and warmer countries …." Irene, who had visual impairment, said, "when I came to Japan, my eyes hurt and they teared everyday… When I went to the hospital, the doctor said, 'yeah, maybe it's because Japan is drier than your country.'" 3 During the 10-month stay, some developed health issues. For example, Jackie underwent eye surgery during her home-stay, and Kevin visited the emergency room because he had problems with urinating. Others humorously recalled the early stage of general adjustment involving the most private daily activity—bathing 4.

Bill: In Malaysia, we never bathe with others. We shower individually.
Researcher: So were you shocked when you found out we take baths with other people?
Bill: At first, yes.
Gill: The most embarrassing part was when a lady happened to be in the third-floor bathroom, which was for men; and Bill (who is blind) 5 was shocked when he found out she was there.
Bill: I opened the door saying, "good evening," which surprised the lady… I waited outside until she finished. When she came out, I told her the "lady's bathroom is on the fourth floor. Let me assure you that I didn't see anything because I'm blind."

As shown above, overseas trainees with disabilities adjusted themselves to the host culture in terms of food, weather, and/or daily conduct, as do non-disabled individuals would adjust to a different culture.

No difficulty with adjustment

Previous cross-cultural or adaptation studies predominantly focused on difficulties, maladjustments, or stressful experiences of individuals. Therefore, prior to conducting this study, the first author had anticipated that some trainees might experience psychological difficulties with adjustment. On the contrary, repeated interviews with the trainees revealed very little difficulty 6. Mike mentioned that "the only thing I found difficult was finding a place to sit" when tired. In the interview with Gil, he stated that "the hardest experience in Japan" was having internal discord among fellow trainees, which "made up only 5%" of the total training days in Japan. According to JSRPD staff, among more than one hundred former trainees of the program, only two went home and could not complete the internship program due to psychological maladjustment. 7 Several themes emerged from the trainees' responses to the following question: "Did you have ANY difficulty in Japan?" Details are described below.

No difficulty with adjustment: Communicating through technology, and finding a community via technology

Although there is little known about cross-cultural (mal)adjustment of people with disabilities, in a study of non-disabled individuals, Kim points out that cross-cultural adaptation is influenced by coethnic interpersonal communication (Kim, 1988).

All trainees were provided with a new laptop computer and a cell phone, with which they remained connected to their friends, families, or clients back home. Leo, a lawyer, communicated with his clients and employees through the Internet, and he even broadcasted his web radio program from Japan. Others mentioned that they could talk to friends and/or families via Facebook or Skype on a daily basis, and so they rarely felt homesick. Mike stated as follows:

When I stayed with a home-stay family, I felt a little homesick because of the traditional New Year, which made me remember New Year's Day in my country, and I missed my family. But after talking with my parents through Skype and meeting with some Vietnamese people living here, I began to enjoy the parties.

On the other hand, Jackie appeared to have felt homesick because of Facebook, which reminded her of cultural differences, as she found out the whereabouts of her fellow Filipinos.

December 25^th is very different in Japan, with everyone working. We also had training—it was the first time I trained on Christmas. So it made me sad when I checked Facebook, because everybody was having fun, going to parties, and spending time with family, but here I was in Japan working.

Additionally, the aforementioned statement made by Jackie referred to a work expectation (working on Christmas) that differed from that in her home country; this is called work adjustment (Black, 1988). Kyoko also commented on communication technologies and trainees.

(Before coming to Japan,) all trainees gathered information about the program via the Internet or SNS. About half of the trainees this year brought their own computers from home… I've worked in this field for more than 13 years—it has drastically changed in terms of the technological environment and trainees' mindset. 8

This change, according to Kyoko, is attributed to economic advancements in the Asia-Pacific region. In sum, as stated by Kim (1988), regardless of having a disability or not, communication technology, especially social networking systems, seemed to have played an important role in easing, or increasing, homesickness in trainees.

Helping each other and learning from seniors: cross-disability communication and intergenerational communication

While Fox and Giles refer to an interaction between a person without a disability and a person with a disability as interability communication (Fox & Giles, 1996), communication between individuals with different (in)capabilities (e.g., communication between a person in a wheelchair and a person with visual impairment) is called cross-disability communication (Best & Butler, 2012), which foregrounds a collective disability identity (Little, 2010).

Regardless of home cultures, some trainees of the present study had very little contact with others whose disabilities were different from their own back home. Hayashi and Okuhira (2008) stated that some people with disabilities (PWDs) have a "low regard" for other PWDs due to an environment where "there were no role models with disabilities to look up to" (Hayashi & Okuhira, 2008). A JSRPD staff member, Kyoko, further elaborated on this aspect, as follows:

When asked (during the exit-interviews) in April (i.e., two months before trainees return home), some trainees confessed that in the beginning of the internship, they had not liked their disabilities and used to feel uncomfortable being around other people with disabilities because of a sense of aversion of being one of them.

This self-hatred and sense of aversion toward other PWDs is termed as internalized ableism, which results in "the distancing of disabled people from each other and the emulation by disabled people of ableist norms" (Campbell, 2008, p. 7). However, some trainees evolved into new individuals after their internship days, as they "lived and worked under the same roof" with other PWDs in Japan. According to Kyoko, it was this under-the-same-roof experience that "transformed negative perceptions of disabilities into positive perceptions," through cross-disability communication with other PWDs. Through group and individual training sessions, trainees learned how to assist others with disabilities and how to form group cohesiveness. JSRPD coordinators made an effort to help trainees learn about their peers' disabilities, so that they could complement each other's functionality in carrying out their daily activities. Many trainees mentioned this cross-disability communication as one of the experiences they remember fondly.

In field notes, it was noted that Gil, who used a wheelchair due to his physical impairment, took sign language lessons in order to communicate with Dale and Christopher, who had hearing impairments. According to Kyoko, a hearing impaired woman named "Helen" was the leader of the group, and other trainees learned sign language to communicate with her.

One day, Kevin, who used a wheelchair, acted as the eyes for Irene, who had visual impairment and was trying to carry a large bag, while she in return pushed his wheelchair. Kevin recalled this cross-disability communication, as follows:

The first thing I have to mention is that it's really interesting to learn about their disabilities because everybody has a different shogai (disability). When they have different shogai, it's very interesting to see how their communication and thinking abilities are affected. For example, those with shikaku shogai (persons with visual impairment) think of things they can't see. We need to understand their needs. We have to adjust ourselves to them. That is what I learned.

Indeed, his cross-disability communication lesson was valuable to him, as he mobilizes the disability rights movement in his home country with different disability groups.

While cross-disability communication among PWDs is horizontal, some talked about vertical, disability-specific intergenerational communication (i.e., interactions with older and more experienced individuals with disabilities) as being a valuable experience that changed their perceptions toward disability and growing old with a disability. During the ethnographic study, we observed active intergenerational communication among trainees with hearing impairment, likely due to the language they shared across cultures, i.e., sign language 9. Naoko, who was a JSRPD staff member and a sign interpreter, explained that compared to spoken languages, sign languages share so many similarities across cultures that people with hearing impairments from different countries could easily overcome language barriers.

Trainees with other disabilities also proactively sought intergenerational, often intra-disability or disability-specific, interactions. Eve was quite inspired by a former trainee with the same disability as hers, who got married, had a child, and currently lives in Japan. This woman and Eve used to work together in their home country, and the woman once visited the dormitory in Tokyo where Eve and Felicity stayed. Felicity was shocked to see this woman for the first time, who was pregnant with her child, because back home, she "used to think women in wheelchairs never get pregnant." Eve called the former colleague a "role model for PWDs in my country because many PWDs are worried about whether they can have a happy marriage or can have a child," and recalled that their communication changed her self-hatred owing to her disability. Kevin also mentioned an old Japanese person who had been paraplegic for more than three decades; this man had the greatest impact on Kevin in terms of coming to terms with the long-term adjustment to his disability. Kevin stated as follows:

Mr. K, who has a spinal cord injury, is now 78 years old. He was injured when he was 18 years old. He has used a wheelchair for 60 years… Before I came to Japan, many things concerned me; for example, long-term urine or internal body function management over the years to come. In Thailand, my friends are around my age, and we don't see any people who have lived for that long with a spinal cord injury. So in Japan, I had to find out what would happen with a spinal cord injury; that was the most important thing to learn before anything else, the number one issue. He (Mr. K) is 78 years old, and still genki (energized). So when I stayed at his home, they (Mr. and Mrs. K) taught me how to eat, how to stay healthy, how to control urine, etc. They stayed married for 50 years, and his wife is now 62 or 65. They were a very good example of how to live with a spinal cord injury.

As described above, cross-disability communication and intergenerational communication helped our trainees adjust, through partnerships with other trainees who have different disabilities as well as with older individuals with disabilities.

Different environments and disability adjustment

According to the WHO, "Environmental factors make up the physical, social, and attitudinal environment… the factors are external to individuals and can have a positive or negative influence on the individual's participation as a member of society, on performance of activities of the individual, or on the individual's body function or structure" (World Health Organization, 2001) (p. 16). The passages below illustrate how environmental factors, such as physical, social, and attitudinal, shaped the adjustment paths of the participants of this study.

Some of the trainees who arrived in Japan walking started using a wheelchair in Japan.

Researcher: When did you start using a wheelchair?
Felicity: Since the individualized training program started.
Researcher: Do you prefer a wheelchair to get around?
Felicity: Yes. It's faster and more convenient to get around, for example, when going to the station.

Felicity, who dragged her feet but had never used a wheelchair in her home country, found a wheelchair more convenient and faster in Japan. This was puzzling to us at first; 10 however, another trainee also commented, "in my country I was encouraged not to use a wheelchair" because "it is not possible to use a wheelchair, because we so often use pedestrian bridges to cross roads… but here [Japan] it is just the opposite: here, everything is so accessible, so if I want to roam around freely, then a wheelchair is a good option." Their accounts suggest that cross-cultural differences in accessibility influenced the level of wheelchair use and their perception toward wheelchairs.

Irene and Jackie, both of whom had visual impairments, started going out alone using a white cane during their time in Japan. Back home they always went out accompanied by others, e.g., friends and/or family members. When interviewed, they said that they could use the cane because "the security level is quite high, so you don't worry you will be robbed when you walk" and "in Japan you can walk in the middle of the night and nobody will hurt you." Although Irene did not mind walking with her friends as guides, she commented that "it (using the white cane) gives you more opportunities to do and try many things," and "I like to challenge myself more" when using a cane. This illustrates how cultural differences can mold disability experiences. Another statement by Eve illustrated a different physical environment wherein her perceptions of herself had greatly been influenced. When asked about situations requiring help, she was "too ashamed" to "ask for help" in her mountainous home country where she was dependent on her friends and "rarely went out alone." In Japan, she started using a powered wheelchair and went exploring, and became less hesitant about asking for help. In terms of the social environment, many trainees mentioned how astonished they were when they learned about, for example, the availability of a personal assistant system and/or disability pension, which greatly impacts social participation among PWDs.

In addition to differences in physical and social environments, others pointed out a different attitudinal environment compared to the one back home. Mike felt that Japanese people "don't look at my disabled leg… they just look at my face, don't look at anything, and then walk without looking back at me… I also found that my disability becomes invisible, it disappears, which is nice. When I am in Japan, I feel as though I'm not disabled. Why? Because of the environment." Kevin also stated the following:

[In Thailand] I used to think that my disability was a problem—that if I didn't need a wheelchair, I could walk and the problem would disappear. In other words, I felt that I was the problem. But after coming to Japan, I found that I could go everywhere and do anything. Now I understand that it wasn't me, but rather the environment that was the problem. When I am in Japan, it's like I have more independence, and I feel like my disability has become very small.

Their accounts seem to stem from a different attitudinal environment, which made them less aware of their physical disability and feel more liberated than they did in their home country.

Eve also talked about a rather crude attitudinal environment she had encountered in Japan. When she stayed at different Japanese CILs, she was often asked the same question, "have you ever had a boyfriend?" This shook her heart from the bottom.

[I was asked many times in Japan] "who do you like?" or "why haven't you had a boyfriend before?"… I felt unhappy when told "you are 24 years old with no dating experience, which means you're still a child."

According to Eve, in her country, no one ever asked her about her personal relationships because individuals with disabilities were perceived as unfit for marriage. She continued:

In my country, people don't talk about their relationships or whom they love… My life so far lacks only this relationship part. But in Japan, because of this missing experience, I was told I am not a grown-up yet. A different country, a different culture.

Cross-cultural differences in environments shaped how trainees with disabilities experienced disability, and the Japanese environment, which is more wheelchair-friendly than their native countries, made them feel less ableist. At the same time, as with Eve's experience, a cross-cultural difference toward privacy became apparent.

At the cross-roads of disability and culture

According to Hirono (2011), there were three major influences of U.S. IL movements: a CIL as a place for organizing disability movements, introducing a paid care system, and people with disabilities as policymakers and care providers, rather than recipients of various services, which was the case prior to the 1980s. Although the U.S. IL movements greatly impacted Japanese disability movements, Japanese disability activists did not copy the U.S. IL systems, but rather altered them to be culturally appropriate for Japan (Hirono, 2011; Ito, 2014).

For example, unlike most CILs in the United States, AJU in Aichi prefecture has a living facility which aims to provide a "boardinghouse for PWDs" and functions as a transitional facility between living in a custodial care facility, home, or hospital and living in the community (AJU Jiritsu no ie, 2011) 11. Between 1990 to 2011, 107 individuals with various disabilities, including those with physical, psychological, and/or intellectual disabilities, resided at AJU, had stayed for approximately three years, and a majority (92 members) made the transition to "independent living" (IL). Interestingly, of those 92 belonging to the IL category, 8 moved to their parents' home, suggesting that IL in Japan does not necessarily mean living separately from parents or living alone in the community. According to an interviewed PWD who departed AJU, "I don't think IL merely means 'living by yourself in the community.' Even if you're at a care facility for the disabled or living with the parents, you still can practice IL as long as you let others know what you want with self-determination and self-selection at your own risk" (AJU Jiritsu no ie, 2011, p. 106). Another person with a disability replied as follows when asked what IL meant: "IL means when you give advice to someone with tracheotomy and do peer-counseling, in short, a sense of being useful and helpful to others" (AJU Jiritsu no ie, 2011, p. 123). In sum, IL in Japan does not connote a mere living arrangement, but rather refers to autonomy and/or inter-dependence. A disability does not occur independently of the culture that influences one's daily living.

Many participants in the present study also offered interesting observations about disability and culture during the exit interviews. For example, a female participant suggested a potential explanation for why Japan is more "accepting of the person who is on wheels" than her home country of India, where they are known as "the children on the cart—the child cart… In India I have never ever seen a child being taken around on the child cart. That is not part of our culture (in which a child is always held by his or her parent(s)." Kevin pointed out that while his home country was not doing better than Japan in terms of services or technology, people of his country were willing to fight, which is the "part I feel we are stronger [than Japanese]… because in Japan, people already have a lot and they currently take it for granted that they can receive support…in Thailand, that is not the case, and we have to fight for it. Japan was likely this way once, maybe 10 years ago." Another participant gained a foreshadowing of the trajectory of disability movements in his country, from studying the history of those movements in Japan. He "studied the Japanese disability movement" and understood that "the kind of system present in Japan in the 1990s is what Pakistan has right now." He felt that he could forecast the direction in which newly-started disability movements in his country could head into or pitfalls which they should avoid in coming years by studying what Japan already had experienced.

Similarly, many program participants felt that Japanese disability systems were unfit for the disability environment of their countries or would have to be altered to be culturally appropriate. Leo felt that the Japanese assisting system at stations, where station staff prepare a slope and relay a disabled passenger's traveling schedule to arrival station staff to help the passenger get off the train, did not apply to Pakistan because his culture "was not punctual at all." He further stated that a PA service based on an employment relationship was too impersonal and thus unfit for Pakistani culture, where "it is very necessary to create a friendly relationship between staff and the house members. Once that relationship is constructed, you can allow PA staff to enter the house." At the end of the internship, Leo seemed to have gained an understanding of his culture, specifically with regard to disability and what needs to be done, as he concluded by saying, "I can make changes according to my culture – there are different cultures, different people, and different mindsets." The accounts above suggest that disability activism succeeds best when it is culturally appropriate and what works for PWDs in one culture may not necessarily work in another culture.