I’m turning forty next year. When discussing possible plans with a friend of mine she echoed my feelings exactly, “When you grow up with a disability and you turn forty you deserve a parade.”
A parade not because you are an inspiration, but for dragging your body through forty years of physical pain, while attempting to shape your life into a socially acceptable notion of success. A celebration for having the strength to navigate childhood and young adulthood while the whispers of “how does she manage” is echoed from the mouths of strangers, mentors and family. Keeping your identity whole and the dream of possibility alive is what is daunting when you grow up with a disability, especially when your trained to believe the notion of doing anything is a miracle.
The miracle for me is not surviving my disability but that I am a parent. Not for the miracle that I gave birth to my child, but that I have been witness to his transformation from a flutter of feet in my growing belly, to a day-dreaming future fireman of three.
I celebrate my survival and his thriving by creating possibilities and memories. I started my year of celebration by traveling to Japan. I found a last minute discounted cruise that went from Vancouver, British Columbia, through Alaska and ending in Japan. I am fortunate that I had the financial resources to make this trip. While not everyone has this ability, several organizations including Mobility International and other organizations exist to promote the international exchange of people with disabilities. Here are the things I learned on my journey:
Cruise ships are accessible traveling hotels on the water. I had always wanted to travel internationally but feared the logistics and fatigue of international flights and dealing with heavy bags. Traveling by cruise ship allowed me to pack my bags once, not have to worry about traveling far for food, have access to laundry, entertainment, and even included childcare, all while enjoying the view on the way to amazing destinations. The best part was once I got to Japan I was already adjusted to the time change. The cruise ship turned the clocks forward one hour each night once we crossed Alaska.
We are in Japan now what do we do? Once off the cruise ship we spent nine days in Japan. We didn’t want to lug our heavy bags all over Japan, so we used the TA-Q-BIN bag delivery service. Be aware most stores, restaurants, taxi, etc. only take cash, rather than credit cards. Most ATMs also don’t accept American ATM cards. Look for 711 stores or convenience stores located everywhere and make sure your bank can increase your daily cash withdraw amount. You do want to bring a credit card for hotels, airlines, etc., but watch the exchange rate and credit card fees. Also don’t forget to notify your bank and credit card companies you will be traveling abroad so they don’t block your cards.
Accessibility of Japan: Japan has several disability related laws including the Basic Law For Persons with Disabilities originally passed in the 1970’s and has been amended since Japan ratified the United Nations Convention of the Rights of Persons with Disabilities (CRPD) in 2014. On April 1st of this year the full impact of the CRPD was realized with Japan’s implementation of the anti-discrimination provisions comprising of two parts, “unjust discrimination” against people with disabilities and a right to ask government agencies and private businesses to take “reasonable accommodation” to remove social barriers for people with disabilities. This, and the upcoming 2020 Olympics, has made training around disability accommodations a priority. Progress in improving the rights of people with disabilities and the social attitudes towards people with disabilities is a critical issue in Japan. As evident in a massacre that occurred on July 26, 2016 when a man wielding a knife broke into Tsukui Yamayuri En care home, for people with disabilities outside of Tokyo and brutally murdered 19 people as they slept, while injuring another 26. Afterwards, he turned himself in to a local police station, with the explanation: “It is better that the disabled disappear.” As described by Mizuki Hsu, in Japan, as well as many other countries, including the US, progress still needs to be made to improve the human rights of people with disabilities.
While disability accommodations are far from perfect, like in the US, Japan’s accessibility laws mandate new construction projects be accessible. I found major train stations, airports, and newer buildings were accessible. But be aware, that many of the train stations have several staircases and while elevators are available it may require a complicated detour to find the right elevator for the correct area of the station.
Many of the temples and historic locations have gravel paths and may not be accessible. But I was amazed that in Kyoto one of the major temples, Higashi Honganji, or, the Eastern Temple of the Original Vow, was retrofitted throughout the property to be accessible. The temple is an UNESCO world heritage site and has surviving masterpieces of architecture from the Azuchi-Momoya Periods and early Edo Period. Another highlight from our trip was on the Sagano Scenic Railway, a sightseeing train in Kyoto that takes you through mountain passes with a view of the rapids of the Hozugawa river. This charming older train had a wheelchair seating area and assistance to board with a portable ramp.
Sleep: Accommodation in Japan usually charged per person. Younger children, under 12, are often free as long as they sleep in the same bed, but if you ask for an extra bed, you’ll be charged for it, but cribs for babies are usually free. We used Airbnb to rent local apartments and if I used a wheelchair I would have had challenges. But I found people to be very friendly and answered all my questions, so it is possible to live like a local with some advance planning. But if you are concerned, most major urban hotels have wheelchair accessible rooms, while smaller “business hotels” and traditional Japanese-style inns (ryokan), may not accommodate wheelchair users. A few great resources to help you with your research include the Accessible Japan website and these videos on traveling in Japan and living in Japan.
Bathrooms: Public toilets in Japan are free and everywhere, and tourist attractions, train stations, even the long distance bullet trains nearly always have a very large wheelchair accessible toilet, often equipped with a change table. Many of the stalls also have “baby chairs” basically a wall-mounted bracket with holes for legs, which is quite handy for briefly restraining a toddler from pushing all of the buttons on Japanese toilets. Japanese toilets can the best form of entertainment for a potty training toddler, it was for mine, but also be aware that many don’t have toilet paper so you may want to bring tissues or wipes.
Language Barriers: I feared language barriers would make navigating around Japan and dealing with my diet restrictions nearly impossible. While not perfect I found with some advance research, the Google Translate iPhone app and Google maps using the transportation tab I was able to navigating where we were going. I also found in general people on trains and the station agents very helpful even with my extremely limited Japanese language skills.
Cell Phone Service: SIM cards allows you to use your own cell phone in Japan, provided your phone has been “unlocked” by calling your cell phone company before you leave. Make sure to ask if your phone (such as an iPhone) will work on a Japanese network (most modern phones do). Most SIM cards available to tourists are data-only and do not allow for voice calls (except when using internet-based telephone services such as Skype or Google voice). Offers by the various companies differ on connection speeds, networks used and eventual data transfer limits. They are typically available for a specified time period (e.g. one week) or for a specified maximum amount of data (e.g. 3 GB to be used within a certain time period). SIM cards can be purchased at convenience stores, at airports, but the best deal we found was at a BIC Camera store, an electronic department stores that has locations all over Japan. The SIM card included free Facebook without depleting my data use. Having a cell phone with data was critical, especially when navigating streets and transportation and using translation apps.
Parenting fears: Traveling anywhere with a toddler is challenging but traveling abroad was unthinkable. What if he misbehaves? What if I loose him? Will he enjoy the activities or will I be dragging him everywhere? The Japanese word for discipline is “shitsuke,” which can also refer to good manners or to planting straight lines of seeds in gardening or farming. This was my misguided perception of parenting in Japan. I figured I was expected to keep my child perfectly manicured and in check at all times: running around yelling in trains or restaurants at anytime would not be acceptable and would earn me cold stares and harsh treatment. Indeed, I had frequently experienced this in the US.
Even during the cruise, I was told by an American couple, “I guess it’s politically incorrect to tell you to control your child.”
If anything, I experienced the opposite in Japan with either people ignoring typical toddler bad behavior entirely or smiling and saying he was cute or a clever active child. Teaching my son to say his name in Japanese helped tremendously, resulting in giggles from many people and they reinforced his good behavior when he received countless treats.
Navigating Japan with a Toddler: Leave your giant stroller at home, and opt for an umbrella stroller, but use it sparingly. City sidewalks are busy, temple and shrine paths are frequently gravel, trains are crowded (impossibly so in rush hour), and many locations including department stores, museums, zoos and many attractions have free strollers. Trains are entertainment all on their own. The Japanese Railway (JR) operates local trains and long distance Shinkansen (Bullet train) that allows long distance travel at lightening speed throughout Japan. The Bullet trains have plush seats that can be turned round by 180 degrees, toilets, phones and even a food cart on board. On trains and buses, children under 6 travel for free and children under 12 are half price. You can buy a JR Rail Pass in advance making it easier to deal with ticket purchases or buy a JR’s Suica Smart Card once in Japan. You may find some local trains that don’t take the JR rail pass so you may have to buy additional train tickets for local suburbs.
Things to Do: Did I mention the trains? Besides the bullet train, you can ride the elevated Yurikamome and Tokyo Monorail lines or visit the Saitama’s or Kyoto’s massive Railway Museums or visit the Tokyo Toy and nearby fire museum. Aquariums, Zoos and Animal Sanctuaries are throughout Japan and children under 6 are often free, or half price. Japanese animation is more than just Hello Kitty, the Ghibli Museum near Tokyo is a place of pilgrimage that should not be missed. Technology in all forms including robots is showcased in many museums and corporate headquarters such as Mazda, and Toyota. My son loved all the vending machines, toy machines, and especially the purikura machines (Japanese-style photo booth). The magic is that once you have taken your photos, you can alter or decorate them on a digital screen with handwritten messages and wide variety of effects such as adding mustaches, accessories, sparkles, or backgrounds, before printing them out as stickers or photos or emailing them to yourself in digital form. We didn’t visit, but I am sure it would have been a big hit, a Geemu-Sentaa, game center. The Japanese video arcades typically include physical games, dancing-or drumming-type rhythm games, grabber games to win stuffed animals and often have Karaoke or bowling.
Eat: You will never go hungry for delicious affordable food as long as your near a train station, from bento boxes (ekiben), filled with local specialties, to ramen stalls paid for via a vending machine and picked up at a counter, to elegant displays of sushi and tea time sweets, you will find culinary delights at every turn. Enjoying a delicious ekiben while we watched the scenery go by was one of the highlights of our trip.
Hospitals and Health Clinics: My husband broke his foot on the trip so we got to experience Japan’s health care system. He was seen in a local hospital emergency room clinic, called a kinkyūka. To make sure we didn’t have a language barrier we called in advance and asked, “Eigo o hanasemasu ka?” (do you speak English). The person we spoke to arranged a specific time we should arrive. We had travel insurance, which will reimburse us for the cost of the care, but we were required to pay cash, around $100 (10,478 Yen) for an x-ray and consult. Like most hospitals the wait was around three-hours. The US Embassy in Japan maintains a list of English-speaking clinics throughout the country, and the Nihongo de Care-Navi can translate most medical terminology. For life-threatening emergencies, or if you need an ambulance, call 119 (not 911, for police dial 110), which has English-speaking operators. If you need a prescriptions (shohōsen) you will take it to a pharmacy (yakkyoku).
Visual description of image: photo collage from left to right. Top left 1.picture of boy with yellow jacket asleep on mom’s lap. 2. Elevator with images of wheelchair user symbol, pregnant woman, man who use cane, man who use crutch and woman using stroller, Japanese characters telling elevator dedicated use for these groups, 3. Mother smiling while child lays next to her under a blanket watching an movie on an iPad they are both passengers on a train,
Second rom left to right. 1. Picture of a door with sticker showing service animals allowed, 2. Small boy in front of a with curved door with red and green buttons- wheelchair accessible bathroom on a train, 3. Boy in front of a tv with a blue sky showing Mount Fuji and a temple