In 2001 Tracy was working in Japan. That summer his daughter Ashley and I went to visit him for three weeks. We left on August 6th. Looking back, the funny thing is, the day before I left on this trip, JR and Chicken got married. (friends of my brother's). I had offered to do the wedding photo's as Andrew's gift. He was the sweating, nervous best man. I shot the wedding and left. Those were film days. I dropped the film off and gave instructions to Andrew to pick it up and deliver them to the Bride and Groom. I went home and packed, woke up the next day and left for Japan. One of the people, I met that day, of the many, was a man named Jay Cruz.....
The world was different back then. Ashley and I travelled back by plane in the end of August 2001 Tracy flew back a few weeks later, just prior to 9/11....
This trip, while it was not our first trip together was a memorable one.
I have always kept a journal of all my trips. Below is a summary I wrote to share with friends when we got home.
Tokyo August 2001
First, let me start by telling you that I love America and I am so glad to be back home. Tokyo is on the other side of the globe, traveling there takes it’s toll. Our plane left Rochester at 10:30am on Monday and we touched down at 2:30pm on Tuesday, Tokyo time, (that would have been 1:30am Tuesday Rochester time). Out return trip, I think was even more grueling, we left Tokyo at 2:30pm Thursday, Tokyo time, which would have been 1:30am Thursday Rochester time and arrived in Rochester at 6pm after 14 hours in the air and a two hour layover in Chicago. Our flight from Chicago actually left Chicago at 1:10pm Thursday, an hour earlier then when we left Tokyo, so we got to live through Thursday twice last week!
When we arrived in Tokyo, we immediately became the minority with a disability. They called us “guy-jing”, (foreigners). Japan is, obviously all Japanese. I have never experienced this before, I soon realized the other countries I have traveled to were all western countries, where for the most part, if I did not speak, I could “blend in”. This was not the case in Japan. I am too big and my hair too curly, not to mention my eyes look nothing like theirs. The language is very difficult to pick up and the writing is almost impossible to decipher, although we did learn some helpful sight words.
The Japanese are very nice people. They are very polite and very proud. In direct contrast to their politeness however was the fact that they did not like or accept “guy-jing”. I would venture to say that about 80% of the time when we would get on a train or subway and would sit down (when there was a seat) who ever we sat next to would get up and move. They actually would rather stand, then sit next to us. It happened time and time again. One time I was standing in front of an older lady and she grabbed me by my blouse sleeve and pushed me to the back of the crowd. One night when we were out, I was denied access two clubs because I was female and American. Tracy bribed the doorman double the entry fee at the second club and got me in. (3400 yen, about $30). I’m not exactly sure, but I think it was a “sex club”, I got this impression from the videos playing and the activity occurring in the back room. It was by Shijuku, where the explosion was last week.
Tokyo is a very, very large, populated, neon city. People, whole families actually, live in very small apartments, one on top of the other. The Japanese love their plants. The front of just about all apartments are loaded with potted plants. It was very pretty walking down some of the smaller streets, like the one our apartment was on. During our stay we spent some time at The Imperial Palace. Unfortunately, “guy-jing” are not allowed into the palace, but we were able to walk around the gardens. The Japanese gardens are not so much about flowers, but more about meticulous grooming and shaping. The gardens were beautiful. The city is very clean. While people smoke like crazy, you never see a cigarette butt on the ground or any paper/ trash. Very rarely did we see any graffiti. They take great pride in their environment, and that was evident in how they keep it so very clean.
Unfortunately we did not have a car, (too expense to have there), and the other modes of transportation were so expensive that we did not leave the city much. We walked about five miles each day. Tokyo has done an excellent job of making itself accessible to people who are blind. All the streets, subways, sidewalks have different grooved patterns specifically to let them know where they are. Streetlights have voices that say when it is safe to cross. That is the extent of accessibility for Tokyo. The rest of the city is vertical with no elevators or ramps.
While there we lived in a “western apartment”. We laughed at ourselves each morning when we got up and left the apartment, we had created such a western atmosphere in there that when we walked out the door, one of us would often comment, “oh yeah, we’re in Japan”, once we hit the “unwestern street”. The apartment was about 500 square feet, it had a small kitchen, a living room, a bedroom, a bathroom, modern toilet room (we had a very modern space aged toilet – thank God! Which in Japan is a luxury I soon found out), a shower room and a room with a sink and mirror. The last three rooms were no bigger than a closet. The shower room was about four feet by four feet. Half was a shower and then there was a tub about three feet long by two feet wide and three feet deep. What you are suppose to do is fill the tub, take a shower then dip yourself in the tub after you are clean. You are not suppose to empty the tub, the whole family uses the same water to “dip” into. We didn’t use the tub in that manner. The apartment cost $2000 a month. Everything in Japan is half the size it is in America, for the most part including the people. The refrigerators there we call “dorm” size here. Our apartment didn’t have a stove; it had a fish oven. (we never used it). Our disability came in when we realized that in Japan we didn’t know how to use the washer and dryer, run the dishwasher, or use the microwave. All the buttons and knobs to operate these appliances were written in Japanese (there were no pictures). In an attempt to use them we just began turning knobs and pushing buttons until something would happen at which point we liked to believe we turned on the machines correctly and everything would turn out the way we wanted. After three weeks, I believe I got the correct sequence down for operating the washing machine (even though we laugh, because we’re still not sure I didn’t just put it on to the rinse cycle each time).
We did have a television, but no cable so everything for the most part was in Japanese. We had gotten to the point that we would make up the news as we were watching it in the evening. Particularly the weather report. While we were there, a typhoon hit Tokyo. I had called that weather report correct, much to our surprise. We spent that evening visiting with friends on the US Airforce Base. Most of the movies on TV and in the theaters are American movies and interestingly they sub title them in Japanese, so we were able to watch videos and movies, and understand them!
The streets in Tokyo are very narrow. They drive on the left side of the road and the steering wheel is on the right side of the car. That took getting used to when catching buses and crossing streets. The subway station that we took most frequently was about a mile away from the apartment. We walked that at least once a day there and home again. I could summarize my trip as three weeks spent on a treadmill and stairmaster. There were always, ALWAYS stairs to climb, and no matter where we went or how we were getting there we always had to walk a distance to our mode of transportation.
Each time we would head towards the subway we passed a little pet store, among other types of shops. Once the stores open each day, they expand out onto the sidewalk. The sidewalks were crowded with people to begin with, now add groceries, produce, pets, plants and they were very tight. The sun was very strong there so, whether it was raining or not, people used umbrellas. While walking down the street we frequently had to duck to keep from being poked in the eye by an umbrella, or we had to step aside to the ringing of a bicycle bell. Bicycles are very popular modes of transportation and they ride them on the sidewalks. The pet store was our favorite to pass each day because of the caged animals, domestic pets that we stopped to play with daily. The most interesting of which were the cute little caged squirrels, that would reach their little paws out to us crying to be freed, (we thought anyway). Yes, squirrels. We would stop and rub their bellies and they would hold our fingers in their little paws. I have a new love of squirrels. Ashley and I were trying to plot a way that we could free the squirrels before we left, but we never had the nerve to follow through. We even considered buying them to set them free, but they wanted 2980 yen per squirrel, (about $270).
Tracy worked a portion of the time we were there, so Ashley and I took to exploring the city on our own. It is a very safe city, so we never worried about being mugged or harmed. We had mastered the subway system there. The city is broken up into districts or sections. We lived in the Hiro-o district. We knew the symbols for that and Rapongi, (the stop on the subway prior to Hiro-o), so we always could figure out how to get home, even when we couldn’t find a subway map with English on it. Japanese people, as I had mentioned are very polite and proud. There were a few times we had gotten lost and would attempt to ask someone for directions. We had our address written on a card in Japanese, so we could always show that and ask for help if we were really in trouble. However rather than say, “I don’t know”, the Japanese would give you some sort of information, even if it was wrong, so we never knew if the directions we were given were actually correct. We learned quickly to ask several different people and head in the direction most often given.
When Ashley and I were our own, we ate many of our meals in a good old American chain, like McDonalds, KFC, Subway or Pizza Hut. The reason we did that was, you go into a Japanese restaurant and the menu is all in Japanese and you have no idea what you are getting, as I was traveling with a 14 year old, her tolerance for surprise food was very limited. Go into an American Chain and there is always pictures with the menu. Not only were there pictures, but 90% of the employees in them spoke English.
My standard drink is ice tea. The Japanese drink ice tea with milk in it. I tried everything once, the milk in ice tea I wasn’t really crazy about. In Tokyo there are pop, juice, water, cigarette and beer machines on every corner. Smoking is a popular thing in Japan.
Early in our trip, Ashley and I though it was very nice of the people in Tokyo to give out little packs of tissue on the street. The packs had advertising on them. Soon we found out that they did that because the public restrooms do not provide toilet paper. Not only that, there were no male/female restrooms for the most part and there are no porcelain bowls. You squat to use the facilities consisting of a hole in the floor. You also squat in most homes and establishments, unless they are “westernized”.
The second week of our trip we ventured out to tackle Fujisan. (Mt. Fuji). Mt Fuji is the highest point in Japan. It is about two hours outside of Tokyo. It is a beautiful mountain, which even though I bonded with it, I never saw the whole thing from a distance (except for pictures) as the weather never allowed. We tackled the mountain the day after the Typhoon hit. We headed out to Fujisan about 7am. We had to take a subway to the JR, (Japanese Railroad) to a bus. The ride out was beautiful. We passed beautiful countryside and many many rice paddies. We arrived at the mountain and headed up on our way. Climbing Fujisan is a popular activity in July and August. It was, by the way about 85 degrees that day. My description of the climb will never do it justice; the pictures may help to explain what I mean. Mt Fuji is 3776 meters straight up!(that’s 12,388.45feet, or 2.34miles above sea level). There are ten rest stations along the way.
The hike starts out kind!. Actually it was quite beautiful. Lush trees, mild incline and millions, I mean millions of butterflies. It made me smile. Then it struck, we passed the tree line and I believe that I found hell on earth. Yes, it was pure hell. The terrain quickly turned black, and rocky. You know the lava rocks in your gas grill, enlarge them 100 times, that’s what we were climbing. At the sixth rest station the mild incline disappeared we began about an 80 degree rock climb up. IT SUCKED. Pure hell. At the start of the climb we bought walking sticks, every station you make brands your stick. That was a little fun. There were many people on the climb with us, not actually with us, but climbing also. I noticed that most of the Japanese were in climbing groups with guides. This was one place that the Japanese were extremely accepting and helpful to us. Everyone we climbed with, passed or passed us greeted us with “good afternoon” “good luck” or “you can do it!” of course in Japanese. We quickly learned to greet them, “ka-ne-chee- wa”. This climb was pure torture. I knew that every cell in my body was alive. At one point I was struggling so much that a tour guide, (my hero) adopted me as part of his group. He was very much like a mountain goat. He ran up and down that mountain like he was born there. He was dressed all in white, with jeannie pants on and an embroidered vest. He wore shoes that looked like mittens. He showed me how I should be climbing. I didn’t have climbing gloves and he gave me his. He didn’t speak English, but spent a lot of time with me. He routinely would check with me to make sure I was all right. When his group would make a station before I did, he would stand at the top and cheer me on until I got up there, then he would congratulate me. He was my “sensei”, my personal teacher.
It was a difficult climb, but what got me was when 70 and 80 year olds would pass me up. Unbelievable! As it turns out, the Japanese know how tackle the mountain. They do it in two days, where as we were trying to do it in one. You can stay in the huts, different stations for 7000 yen a night, ($64). The accommodations consisted of a straw mat on the floor that you shared with maybe thirty or forty other people. It cost 100 yen a squat on the mountain, (80cents). Fluids were quickly going through my body by way of sweat; I didn’t have to worry about squatting.
At the 8th station, about 3100 meters up (7 hours into the climb), I started to get altitude sickness. My head was throbbing; I was dizzy, nauseous and crying. I actually told Tracy (you get a little loopy at this altitude) that I would rather lay down and die on the mountain than go one step further. At that point it was dusk and we headed back down. I think if we had made provisions to stay overnight, we could have made it. We didn’t have reservations, so couldn’t stay. Who would have thought, you need reservations to sleep on a straw mat 3100 meters in the sky with 30 others! My sensei and his group stopped to sleep at the 8th station.
Because of the typhoon, the mountain as very rough. It had also wiped out the “slide” down. So we had to climb down the same way we went up. While I found hell on earth going up, I found God coming down. It took us three hours to climb down, we all fell hard at least once. The whole three hours coming down I prayed to God to get me off the mountain alive. My body was shot, it was indeed God who got me down! Getting home we took a bus, a train, the “bullet” and a subway. While it was free to climb the mountain, transportation that day cost us $400.
The following day our friends in the airforce made it to the top in 7 and a half-hours. I am so proud our armed forces are in such good shape! Our Japanese friend, Joon made it in 4 and a half-hours. (unbelievable).
Tracy had found a nightclub spot where most of the “guy-jing” hung out. Some Japanese people hung out there, but for the most part it was full of people from all over the world. Our favorite spot, interestingly enough was a little corner bar called, “The Advocate”. It was there that we met our Japanese friends, Joon, and Hiro, and a few others. We met our Airforce and Navy friends. Even thought the Navy boys were young enough for me to have given birth to them, it was fun to be around Americans, comparing Japan experiences. We met and hung out with people from Australia, Malta, England, Germany, Brazil and Columbia. These were all people who were there working either with the US Armed Services or with some technology company. Hiro by the way is a concert pianist, who will be working as a translator at the Eastman in October.
Japan is caught between being high tech and very simple. The cell phones, “J phones” are in everyone’s hands over there. Not only are they cell phones, but also they connect you to the web, and they take pictures. I had a ball one night taking pictures with one of my friend’s phones and emailing them to my family.
One night we invaded a karoke bar. What an experience. The Japanese LOVE, I truly mean Love their karoke. It was fun to watch. Fashion is very westernized. The latest craze is kind of bizarre, I have no idea where it comes from. The girls, teens and 20-year-olds dressed in Shirley Temple type outfits with anklets, patent leather, lace and frills. They actually wore these outfits like crazy and styled their hair in pigtails. Periodically you saw a Japanese girl, woman on the street in a Kamono. I bought two at a second hand store. They are beautiful, silk and hand made. Japanese don’t like second hand things so I got the two of them for 3000 yen about $26.
During the course of the trip, while I saw many many Japanese, I saw about 20 individuals with disabilities. At one point however, I realized that one young man I saw a few times on the subway at first I thought nothing of then it occurred to me that he had Down Syndrome, and I hadn’t realized it, because he looked like everyone else. Only once did I see a group with 5 people and two “staff” the rest were by themselves.
I spent a day with psychologists from the National Institute on Disabilities. They were wonderful. They all spoke English very well, and in fact all except one of them had studied in the United States. One of the functions of the Institute is to prepare teachers to work with children with disabilities. They were eager to hear and talk about inclusion. Children are not included in Japan. To go to school there children have to take and pass an entry exam. The average size of a “normal classroom” is 35 students. 40 is the maximum that can be in a class. All students wear uniforms to school. Children with disabilities are sent to special schools and facilities. They are also grouped by the severity of their disability.
I spent an afternoon and evening at an agency similar to The Advocacy Center. As similar as Japan can get. The Agency is located in Yokohama. So I also was able to see Japan’s beaches and the Pacific Ocean from the other side of the world. At this agency, they work with parents, supporting them to support their children. In Japan parents are responsible for their children their (the children’s) whole life. People do not become their own guardians once they turn 18. Financial support comes through the parents. If the government is going to provide funding it is through the local government where the parents live, no matter where the child lives. Most children live at home, with their families, in their communities. It is believed in Japan that when you have a child with a disability you will have good fortune. Families with children with disabilities are believed to be blessed, they are held in high esteem. About 50% of people with disabilities live in facilities. They told me that is where people go when their parents died. All go out into the community to work. There has been a recent turn in events over the past five years. Manual, traditional jobs are disappearing with the advancement of technology. Five years ago this agency placed 2000 people in farming and or fishing jobs. This past year they placed 200. They are facing a new challenge and are not sure where to take it.
My meeting with the Agency people was a very eye opening experience. They did not speak English. I had brought a translator with me to assist with communication. To start out with 10 of us sitting in a big room around a large table. My translator, John was American. He has a child with a disability. He is fluent in Japanese, and recently took a job there. He is moving his son over in January, so he was very interested in the services available. What was interesting for me was how this meeting made me feel. It was so odd. Whether it is true or not, I feel that I didn’t get half the conversation. Nor do I feel that what I was saying was relayed the way I meant it to. I felt very stupid, inadequate and over whelmed. I sat there and smiled most of the time, nodding my head. With the translation, this group thought my transition training was a very odd thing, because it sounded as if we felt we had to be pro active and avoid problems before they occur. They told me that they didn’t expect problems with people with disabilities and when there was a problem, they handled them as they occurred.
We talked about self-advocacy. They have self-advocacy groups that meet four times a year. They are very proud of that. One of the groups wrote up a list of requests for the government to take care of. Number one and number three on their list had to do with transportation. They wanted more accessible transportation, (imagine that, a world wide problem) and the second one regarding transportation was that they wanted the people who you asked for directions in the subways to be more friendly and to give understandable, simplified directions.
Towards the end of my stay with them the group wanted to show me a 20-minute video on employment. I said no thank you a few times and finally gave up and watched the video after they insisted. Of course, I have no idea what it said because it was all people talking, lecture style about employment apparently and it was all, of course in Japanese. My interpreter summarized it for me at the end. He took a whole 3 minutes to summarize a 20-minute video. I really felt lost, and at a great disadvantage.
We all exchanged business cards. The Members of The Institute asked me to come back and spend more time with them in the future. Sho, who was my connection recently, spent a year at The Center for Human Policy in Syracuse. He is trying to come back for a few weeks next year.
My trip was a very interesting one, one I won’t soon forget. I had many new and educational, eye opening experiences. And Fujisan will forever haunt me!. While it was hell on earth, if for some odd reason, If I ever go back, I am going go conquer that mountain. For now, I think I’ll take a few weeks to get back into the western hemisphere time zone, stay on flat ground and show anyone who will look, my photos!
