Independent Living for People with Disabilties began today at Hachioji Human Care Association. The three of us, Siew Chin, Harry and me have learnt the basics during the Independent Living Workshop in September. Today our knowledge about the origin and philosophy of Independent Living grew deeper with detailed explanation by Ms. Nakahara, Mr. Tsukada and Ms. Akiyama.

Ms. Nakahara introduced us to the History of Welfare for PWD in Japan. Mr. Tsukada shared with us the Concept of Independence, History of Human Care Association. Ms. Akiyama related the History of Independent Living Movement in US and Japan. Those early days of Independent Living movements in USA and Japan will be the model that will be used to build a similar movement in Malaysia.

At the end of the day, we were treated to a welcoming party by the Human Care Association. Among those who attended were Ms. Nakahara, Secretary-General of Human Care Association; Ms. Hiroko Akiyama, Director of Hino Independent Living Centre, Ms. Aiko Tsutsumi, Vice-President of Machida Human Network; Mr. Yoshiaki Tsukada, Peer Counsellor, Ms. Yuki Maejima and Mr. Hiroaki Furihata. We were given a choice of sukiyaki or shabu shabu.

I had wanted to try sukiyaki but the soup base smelt strongly of soy sauce and opted for shabu shabu. The thinly sliced beef fascinated me but red meat is taboo food. Instead, I ate vegetables and more vegetables. That was my first taste of authentic Japanese food other than supermarket sushis. It was a very interesting evening sharing with Mr. Tsukada and Mr. Furihata about Malaysia and the concept of Independent Living that is to be applied in Penang.

The cold early in the morning woke me up. In turn, I woke Calvin to turn the temperature up to 30C. We are both sharing the room. Soon, warm air was spewing out of the air conditioner. It was uncomfortable for a moment but we both soon fell asleep again.

0730 (GMT +9): The alarm was set to go off. A van was to pick us up at 9.00am. I had a light breakfast of Ensure, one leftover bun from the night before and some prunes. Slow-moving dark clouds partially obscured the early morning sun. The television weather forecast predicted rain in the afternoon. That was my first sunrise in Japan.

0815: I began to dress up. The long johns was difficult to pull up and I had to get Calvin to help me. The van sent to pick us up was early. We were all not ready yet.

0917: We were all in the van and on our way. Ms. Yuki Maejima, the interpreter from the Independent Living Workshop, came to accompany us. The apartment we were staying in is in Hino City. We were to go to the Human Care Association in Hachioji City, a 30-minute ride from Hino.

0940: The van dropped us off around the corner to the Human Care Association. Ms. Hiroko Akiyama arrived at the same time as us. It was chilly. Fortunately, we were in the open for a very short while only. As with most facilities for wheelchair users in Japan, the entrance to the Human Care Association is equipped with automatic door.

Mr. Shoji Nakanishi, the pioneer of Independent Living in Japan, greeted us. According to him, the Association was established in 1986. The disability movement in Japan is very strong. Hino and Hachioji is very accessible. We were to witness that for ourselves later how true that is.

1037: The morning’s programme was a series of briefings by Mr. Tsukada, Ms. Asuka Ishizaka and Mr. Teruo Murakami, coordinators from Human Care Association, Japan International Cooperation Agency (JICA) and Japan International Cooperation Centre (JICE). JICA basically plans, evaluates and organizes while JICE plays a supporting role.

Mr. Tsukada briefed us on the entire programme of the training. Ms. Ishizaka hoped we would be able to absorb the pertinent points of the training and provided us a set of forms with questionnaires that asked us on our training and problems we face while living in Japan. These forms were to be returned to her on the last day of our stay. Mr. Murakami gave us a short rundown of Hachioji City and got us to complete various forms. We were provided with a medical card and bank card. Our allowances were deposited at the Sumitomo Bank and the card allowed us to withdraw money for our daily living expenses.

1238: Lunch was a bottle of mixed fruit juices and lunchbox (bento) of salad and pasta from the convenience store across the road. That small store was doing brisk lunch-time business. It was well stocked with sandwiches, lunchboxes, breads and typical Japanese lunch offerings, other than items available at convenience stores like those back home. On our way back to Human Care Association, we came across these two pudgy pigeons that was not very camera-shy.

Immediately after lunch, I quickly requested for an Internet connection, retrieved my mails and posted the entry that I wrote yesterday. Internet access was, and still is, one of the things that I cannot live without. Seeing that Wuan was not online, I sent several mails relating my first day in Japan to her.

1330: Mr. Murukami returned after lunch with our validated health cards. Together with Ms. Maejima, he then took us on a tour of Hachioji City. The other purpose to take us to the bank to withdraw our living allowances. The walkways were very accessible and clean. Surprisingly, all the public buses were accessible too. I hope to ride on one of those buses before I leave.

1402: Withdrawing money from the ATM inside the bank was a breeze. Users were given a choice to navigate the menu in English. I withdrew ¥50,000, almost half of my entire allowance for the entire training. It would be a hassle to have to go to the bank often.

1415: After completing our banking transactions we went to the ¥100 store. I know for sure Wuan would love the bargains available there. It was a rather well-stocked shop with a mind-boggling array of items from puzzles and cosmetics and kitchen and gardening utensils.

1525: We returned to the Human Care Association. Mr. Nakanishi briefly enlightened again on several aspects of the disability movement in Japan and the workings of the Independent Living Centres.

1637: Before we realized, we had to leave already. Ms. Maejima was to lead us to take the trains back to our apartment. We will have to return by trains after our training at the Human Care Association every evening. The subway station is about 100 meters from Human Care Association. Our trip from the Keio Hachioji Station to Takahatafudo Station took 13 minutes. There was a gap between the platform and the train. Ms. Maejima inormed the station master of our destination. He then called the arrival station to inform them of us. The station master placed a foldable ramp for us to board.

1703: The routine was repeated when we arrived at Takahatafudo Station. The station was being renovated. We had to move down one level and then up again to go to the Hino IL Centre for a brief visit. There were lifts for all the stairs. While the station master operated the lift, another staff in reflective vest directed passengers using the same stairs for safety reasons.

1732: Two staff from the Hino Il Centre were waiting for us when we emerged from the station.

1735: Our visit to the Hino IL Centre was brief as we will be going there again on Wednesday to learn more about it. Ms. Maejima was a little worried about my freezing cold hands. She advised me to wear gloves but that would make it difficult for me to use the camera.

1806: Dainty little shop dotted the roads near the Centre. That was a place I would love to explore with Wuan if given the opportunity. We made our way to the Sky Train station that was a stone’s throw away from the station that we stopped just now. The ride took only 3 minutes. We stopped at Manganji Station which was about another 2-minute walk to the apartment. It had been a rather long day. We were glad to be back at the apartment again.

Blogged at Hino,Tokyo.

This one took me far away from home. The fear of the unknown and the stress from the anxiety turned me into a bundle of nerves the day when I was about to leave. Wuan was at the receiving end of my endless hassles from getting suitable gifts for the hosts to repeatedly checking my luggage for missing items. Still, she was patient and pampered to my fretfulness without complaint.

Wuan accompanied me to KL Sentral for me to catch the KLIA Express to the airport. I passed the ticket gate with a heavy heart. We have been apart longer than that but the thought of being so far away from her made me leave with a great reluctance. I had wished she could go as my Personal Assistant but there were hurdles along each step of the way. In the end, I had to look elsewhere for another.

The flight was uneventful. The cabin crew of Japan Airlines were efficient. I had informed one of them that I would need to go to the washroom at 1.00am and promptly at that appointed time, she came with an aisle chair and deftly manoeuvred me to the washroom at the back of the cabin. When I first boarded the plane, I had enquired twice if there was an aisle chair inside the plane. Without one, there was no way for me to use the washroom.

I had requested for specials meals for the flight. The low-protein, no salt meal was a refreshing change from what I have been eating all these while. The ingredients are almost similar to what I eat nowadays. The clever presentation made it more delicious then it actually was. Broccoli, mashed potatoes and baby carrots never tasted better.

Sunrise looked different the thousand meters above sea level. The interesting hues from ochre to indigo to inky blackness fascinated me no end. I kept asking Calvin, my Personal Assistant, to snap shot after shot. Unfortunately, cabin lights cast reflection and spoilt the many of the photos.

By daybreak, we were flying across the city of Tokyo. The sight of the unfolding foggy landscape choked me with emotions. I felt lonesome. I wished Wuan were there to behold the remarkable views as the plane approached Narita from the sea. Wuan took me to places I never thought I would ever visit. Now, I was in a place I never thought I would visit but she was not there to appreciate that spectacular sight together with me.

Tokyo’s sky was cloudless. The risen sun glared from behind planes and buildings. After going through the Immigration and Customs, we reported to the JICA Counter for our next leg of journey. A van from the Hino Independent Living Centre was already waiting for us. As soon as we got out of the airport, the sudden cold jolted me into absolute alertness. My breath turned to vapour as I exhaled.

The journey from Narita International Airport to the apartment where we were going to spend two weeks in took one hour fifty minutes on the highway, most of it elevated, ran across residential areas with apartments rising barely twenty meters from the highway. We passed Disneyland and saw the snow capped peaks of Mount Fuji in the distance.

When we arrived at the apartment, the sun was shinning brightly. After being briefed on the facilities of the apartment, we were left on our own for the day. Calvin, Kim (the other Personal Assistant) and I went for lunch at the Italian restaurant located just beside the apartment. After lunch, we walked across to the supermarket that was directly opposite the apartment. I wanted to buy fruits, vegetables and bread as I had planned to cook the duration I was there.

We finished shopping at 1.30pm (GMT +9). The sun was already setting. The sky seemed like 5pm in Malaysia. The overcast sky made me gloomy. The vegetables in the supermarket were extra large. I have never seen lotus roots as big and large as those on the shelf. I was missing Wuan badly again. I wished she were here. We would have fun shopping for food and ooh ahing over the exorbitant prices of grocery here. I had wanted to call her but there were no public phones in sight.

Blogged in Tokyo - January 15, 2006, 11:45pm (GMT +9)

The Star published several physical disability-related articles during the last few days. This coverage has highlighted some of the problems people living with permanent physical impairments have to go through very often. The journalists and editors must be given credit for drawing the public’s attention to such issues.

While such moves to advance the cause of people with disabilities are highly commendable, the selection of words used to describe the persons is imprecise. By using the term wheelchair-bound, it is implied that we are constrained to our wheelchairs. I am also guilty for using this term and some others in my blog to describe myself. I am currently learning to write using the acceptable terms to better reflect the course I am pursuing now. The wheelchair is an apparatus we use to improve our mobility. We are in no way bound to it. We have a life away from the wheelchair too. Likewise, do we call a manager who sits in his executive chair all day chair-bound?

The appropriate words to describe a person like me, if there is a need to include my wheelchair in the description, should be wheelchair user. My peers and I have agreed that this is a better term to use during Disability Equality Training in November. In light of that, the appropriate term to use for parking lots for drivers using wheelchairs is accessile parking and not handicapped parking or disabled parking. Toilets for wheelchair users is better referred to as accessible toilets rather than handicapped or disabled toilets.

Another word that is often associated to people with disabilities is handicapped. Yes, we are physically impaired, but what handicaps us is the environment that was not built to suit our needs. A properly equipped wheelchair accessible toilet enables us. A building with steps but no ramp for access handicaps us. If society is built to include people with disabilities, where all barriers are removed, there would not be a need to label us as people with disabilities, disabled persons, handicapped or crippled, the last two words which is undignified and offensive in some ways. We can all then live our lives on somewhat equal terms. Susan Hemmings and Jenny Morris formulated the Definition of Disability that succinctly explains it in an easy to understand sum.

A disabled person is a person nonetheless. In many cases, the impairment is not the disenabling factor. The surrounding is. We should not attempt to change the person with impairment to suit the environment. Rather, the environment must be put together to enable the person with impairment the freedom to live a life with qualities that are at par with the non-disabled. And remember, we are not wheelchair-bound. We are wheelchair users.

Interesting read:
Beyond the AP Stylebook