Chiyoko Tanaka, 81, is a volunteer lobbyist for the rights of disabled people in Japan. For the past 49 years, together with her daughter, Mariko, she has been working tirelessly to ensure that all people — regardless of the nature of their disabilities — have equal rights in education, housing, work opportunities and lifestyle choices. Tanaka and her husband, Kenji, love being parents and the family of three are often on the move, traveling around Japan by local trains and boats.

Every day is fun.My husband and I start each day with tea and fresh bread that our daughter makes at her institution’s bakery. We talk about her and make plans for our next visit.

Everyone needs to get an education, not just welfare benefits. Going to school is a birthright, supported by laws, but decades ago children with disabilities didn’t have to go to school. Parents could get a special waiver; this means that most of the disabled who are over the age of 50 either stayed at home or went to special schools. The emphasis was not on getting these people an education but on simply providing them with activities. We lobbied to change that system, to take these people as seriously as everyone else. I am happy to say that it worked.

Sometimes parents can’t be fair. I get many questions from parents who have both a disabled child and a child without disabilities. Since the mom and dad spend most of their time and energy on the child with disabilities, the other feels ignored and sad. I tell the parents that since they can’t give more time, they must express their love in powerful ways that kids understand. If, for example, they can spare only one day to be alone with their other child, they must make that day into a holiday. Treat him or her with a great gift; smile, have fun and eat in a favorite restaurant. Make him or her feel special.

Parents only need to know three sentences. “I’m on your side,” “I’m with you,” and “Don’t worry.” That is love.

When you love someone, no matter the circumstances, you want to keep him or her alive for as long as you can. Even if someone is in a vegetative state, his or her partner or relative will want him or her alive. This can be so hard to understand unless you are in the same situation.

For some professions, you become more experienced, yet the salary does not improve. The nurses who take care of my daughter make only about ¥3 million a year. Such hard work and so little pay! They carry the patients to the toilet, wash patients’ bodies, brush their teeth, feed them and love them — and yet they get little in return. They need us to lobby on their behalf as they are too busy working for us.

I may be shy but I never give up. That’s because I’m a mother, and that makes me very strong.

All babies are normal, no matter how different they are. Decades ago, everyone went to the neighborhood sento (public bath). I also went there because I wanted to see what other children could or could not do, how they moved and behaved. I discovered that all children have their own speed, and age is only one of the indicators of their maturity. That helped me a lot. I realized that my baby was not “handicapped,” she was just different from others, which meant that she was basically the same.

Words can only go so far in explaining something. Every December, the Japanese government decides the budget for the following fiscal year, which starts from April. At that time, parents and friends of people with disabilities stage peaceful protests in all the government buildings, from the Finance Ministry to the Education Ministry. I always take Mariko with me. When we talk with the ministers, she’s right there, with us. The reality of taking care of a child with certain needs should not be just talked about, it has to be seen and experienced.

When you don’t have something, you come up with good ideas. Tokyo is limited in land space, which is why there are so many multi-purpose high-rises. For the past six years, our daughter has been living in a building that is 22 stories high. The bottom five stories house private rooms for disabled people, while the rest of the floors contain luxury apartments. We pay very little thanks to this unique system.

When less is shown, more is felt. I love (traditional Japanese) noh theater. It is so deep. Maybe the best example is when an actor expresses crying. There is no sound, just the gentle movement of one hand toward the face. It looks almost like the action of lifting some water in the palm of your hand and bringing it toward your face. Sometimes an actor lifts both hands and we can imagine how deeply hurt and sad the character is. When life is so hard, tears fail us.

Thanks to good nutrition, we have long lives in Japan. I’m not special. I read obituaries in the newspapers and they say things like: “Though in her prime, to everyone’s great shock, she suddenly passed away.” This is about people in their late 70s. The elderly are respected in Japan. Nobody thinks that we are nuisance. Same for people with disabilities, who are loved and respected.

There is so much to be thankful for. I remember other parents of children with disabilities making comments such as, “It’s lucky she has eyes and can see” and “great she can hear.” And I realized how many things my daughter can enjoy in life. Yes, she can’t talk with words or move much, but she has other senses that make her life full.

No parent wants to leave a disabled child behind. We are afraid of what might happen to them once we die. We want them to live long, yet we dread the thought we might die before them. We all always pray that we get to live just one day more than they do.

I think I’m still young. Every day I hope to live longer, maybe for another 20 years. Life is too much fun. Just being with our daughter — traveling with her, eating with her — it is all wonderful.

Judit Kawaguchi loves to listen. She is a volunteer counselor and a TV reporter on NHK’s “Out & About.” Learn more at: http://juditfan.blog58.fc2.com/

In a time of both misinformation and too much information, quality journalism is more crucial than ever.
By subscribing, you can help us get the story right.