Eiko Kimura is the first person with a severe disability who is a member of the House of Councillors in Japan. Here’s a little background on Japan’s National Diet for those not familiar with it. The Diet contains two branches of Japan’s legislature. One branch in the lower house is the House of Representatives. The other branch is the upper house, which is the House of Councillors.
When she was eight months old, she was in a baby walker and fell down a step. This damaged her cervical vertebrae. Later, she was diagnosed with cerebral palsy. Since then, she has had almost no movement in her body except for her right hand. She uses it to operate the electric wheelchair.
For many years, she has been involved in the disability movement. In 2019, she won the election for the House of Councillors from a party called “Reiwa Shinsengumi.” The next year in 2020, she became the party’s vice-president.
Q: Tell us a bit about yourself and what you are working on as a lawmaker.
In Japan’s National Diet, I’m a member of the Ministry of Land, Infrastructure, Transport, and Tourism (MLIT) committee. I’m working to promote the need for barrier-free transportation and buildings. I ask questions and make requests from the perspective of a person with severe disabilities.
For example, I explained to the Minister of MLIT about the problem of wheelchair space on the bullet train. I shared my own experiences and showed him the pictures I had taken. That resulted in increasing the wheelchair space on the bullet train from two seats to six.
I believe that it is crucial for people with disabilities to have freedom of movement because we need to have the ability to leave our homes or facilities and live independently. I believe that a better society for people with disabilities will also be better for everyone else to live in. I fight every day to make this happen.
Q: What changes have there been since you became a member of the Diet?
The National Diet Building has installed ramps, elevators, and wheelchair-accessible toilets as well as made other reasonable accommodations.
Q: What methods do you use to write documents or access information online?
I dictate to my personal assistant who enters the text into the computer or writes on paper. However, it gets awkward when I keep my assistant waiting. So, I feel like I have to say the next thing quickly even though the assistant would not mind.
I also use my phone’s voice recognition or have it read the news out loud. But, it’s hard to use in the middle of the night or when it’s quiet. It would be nice if there was a technology that lets you do voice input without people hearing your voice.
Q: How do you feel about working with other council members and staff without disabilities?
Many Diet members have little or no experience interacting with people with disabilities because people in this country grew up in an environment where the disabled and non-disabled are separated. It’s not easy to communicate with each other because both of us become nervous. Sometimes, they end up talking to my aides or my personal care attendant (PCA) instead of me because they don’t know what to do.
I believe that people with and without disabilities should learn more about each other. However, the current social system and environment don’t allow people with disabilities to participate in society.
The welfare service related to care cannot be used while I’m working, studying, or doing leisure activities. In most cases, it can only be used for bathing and toileting at home. It’s like being told not to work. Unless this changes, people with disabilities will not be able to participate in society or live independently. I really want to change this system.
Q: Why do we have a rule of not allowing visiting care for work?
I think one of the reasons is that people with disabilities are not valued members of society and are seen as a burden. Therefore, we are not expected to work. The reality is that the human rights of people with disabilities are not yet recognized. People with disabilities also want to contribute to society, but we are deprived of employment opportunities.
The whole society is not designed to accommodate people with disabilities because the current system places the burden of caregiving solely on the family instead of recognizing it as an issue to take on as a society. This is why there are very few opportunities for people with and without disabilities to get to know each other, let alone live together.
There is a vicious cycle where laws and systems can’t be improved because of the lack of awareness. Still, because of the current system, people with disabilities can not participate in society and gain the power to raise awareness.
Suppose people with disabilities could participate in society the same way as people without disabilities and rewrite laws and systems together. In this case, I think we can get closer to a society where we can all live and work together. For this reason, amending the visiting care law to accommodate all situations is what I most want to accomplish as a member of the Diet.
Q: How do people with disabilities access information from the government?
Ministries and government agencies have recently started to recognize the accessibility of information for people with disabilities. Therefore, it is still not widespread or good enough. Lately, there has been a gradual increase in reasonable accommodations for information accessibility, such as the sign language interpreters for broadcasting the Diet on the Internet and subtitles for television.
However, for each person to access online information independently, it will be necessary to introduce more accessible technology devices and applications for various disabilities. Furthermore, the considerations required for information access differ depending on the level of disability. For example, some people with mild disabilities can easily use their hands to operate a computer and access information.
For those who are severely disabled and cannot move their hands or have a speech disability, they will have to ask other people for help. Ultimately, it would be ideal if you could type or access information just by thinking about the action in your head. I believe it is important to involve people with disabilities in developing such technologies to include the perspectives of both people with and without disabilities.
The most important thing is to show that the government is trying to include and disseminate information to the disability community in good faith. To bring us closer to the goal, I urge the government to take steps on disability rights and end discrimination. Part of that work is to explore the best way to deliver information to each access needs.
Q: Does this mean that the government is not obligated to ensure the accessibility of its publications?
Although information accessibility is one of the basic policies of the “Act for Eliminating Discrimination against Persons with Disabilities,” it is only a best-effort obligation for the government and the private sector. Therefore, the current effort the government is making is adding phonetics for Chinese characters (Kanji).
Many websites and documents are convoluted and incomprehensible to people with disabilities. And we have been calling for improvements, but not much has changed. This country is well behind the U.S. in terms of human rights for people with disabilities.
The government has a duty to provide necessary information to the people, but I don’t think that people with disabilities are included in the “people.” The government members need to recognize that the human rights of people with disabilities are a critical issue to help this country advance. Otherwise, policies on all accessibility aspects, including information, will not progress.
We need to establish laws that make information accessibility mandatory for both the government and the private sector. To do so, we need more Diet members with disabilities, not only for the sake of this issue but also in other areas. I also wish that we had experts in the government who could suggest ways to disseminate information in a way that is easier for people with disabilities to understand.
Q: Are you involved in any other activities to help people with disabilities become more independent?
In 1994, I launched the “Tsubasa independence station” in Tama City, Tokyo, to support people with disabilities who wish to live independently rather than in institutions or with their parents. So far, 15 people with disabilities have left Tsubasa to live independently in the city where they want to live and be masters of their own life.
Now, I have passed the baton to the next generation but continue to support young people who want to become independent. I want to continue working on creating a society where people with disabilities can live in the community just like other people. I also wrote a script for a play based on the real story of people with disabilities leaving their homes and institutions to become independent. And I traveled all over Japan to perform in it.
In the last 20 years, my health has deteriorated, and I am no longer a member of that group. I still perform occasionally. The play was about the experiences of various people, including people who:
- Became disabled after attempting suicide
- Obtained spinal injuries while swimming in the ocean
- Had been institutionalized at birth and abused
- Had her uterus forcefully removed because it was too tedious for the staff to take care of her.
This was over 20 years ago, but one time the play was performed at an institution for people with disabilities in New York City. I could not attend due to health problems. However, I heard that there was a person who hadn’t seen anybody from outside the institution world in 20 years. It made me very sad. It turned out that the same problem of people with severe disabilities not being able to go out into the community exists in the U.S., too.
Q: Do you have any ideas on how we can take advantage of online platforms?
Well, I have an idea where people can research shops and restaurants and share with the world what kind of barriers those places have. Although restaurant listing sites on the internet provide various information about the taste of the food and the interior design, they rarely offer accessibility information such as the presence or absence of steps.
For example, it would be nice if there was a website or an app that provides information about a restroom’s accessibility, braille menus, utensils, and so on. Non-disabled people also face barriers as they age. They would need wheelchairs and braille blocks as their eyesight and physical strength deteriorate. I believe improving accessibility for various disabilities will eventually benefit all kinds of people.
Q: What can foreigners in Japan do to help your work and disability communities?
I want to get to know many kinds of people and make friends with them. It will be great to have a community where you can meet all kinds of people regardless of their disabilities or nationalities. I want to see more people who want to know more about people with disabilities. That kind of online platform that can create a bridge would be great.
Actually, about 10 years ago, we tried to recruit volunteers through Mixi, but we couldn’t get any. We didn’t get any hits from foreign people either. I imagine people thought it would be tough to deal with people with disabilities, but I wanted people to calm down and come just to make friends and spend time with us. I wish there was a way to send a message to people so they take it easier.