Yuho’s legacy: how my mother taught me to define independence on my own terms.
I was born to a feisty disabled activist mother, Yuho, and a very gentle father, Hidetake. Yuho and I have a condition called Osteogenesis Imperfecta (OI). It’s also known as brittle bones, as it makes our bones fragile. Yuho has had more than 20 fractures, and I have had more than 15. Yuho could not physically carry or cook for me. However, that was no problem because we always had people around to support us. This has made my definition of independence quite different from the conventional perspective. My mother would cook using her voice, instructing her support worker about each exact step of the cooking process. She called it ‘voice cooking.’ She had no problem asking for help from other people because she knew that’s how we gained independence.
In reality, disabled or not, we are all dependent on each other. For example, without someone producing the food we eat and the clothes we wear, we would be starving and naked. However, we don’t take these things into account when we talk about independence. Instead, we call people independent when they can do most of the things around them by themselves.
The mainstream world teaches us to place our value in direct correlation with how many tasks we can do, but I did not live in a house that taught me I should strive to ‘do the dishes’ – I lived in one that taught me it was my right to be in control of how the dishes are cleaned and who cleans them. This is what my mother taught me and something I now seek to teach others.
Yuho’s understanding of independence came from her journey into activism, which started when she was a young child living in Japan. Despite having a loving mother and a sister, Yuho’s childhood was not a happy one like you would want any child to have. She faced a lot of medical intervention, and because she had to spend so much time in the hospital, she had moved to an institution that had educational and medical facilities. All of the medical intervention turned out to be useless for her, and she felt more like a “medical experiment” than a child. An activist at heart from a young age, Yuho refused medical intervention from the age of 13, and resultantly, she left the institution she was living in.
However, after she left, she was denied entry to a local intermediate school. She had to fight to get in when she finally did Yuho could only proceed into high school by distance learning, she eventually dropped out. There was no governmental support for her at that time, so she was often left alone at home when her family went to work. Additionally, Yuho was denied the right to have a wheelchair because she could walk a bit in the house.
At this time, my mother felt very stuck and could not see a future for herself. That changed dramatically when her friend, who she met in the institution, took her to a Hanami. She saw both disabled and non-disabled people spending time together under a big cherry blossom tree. One guy with Cerebral Palsy (CP) was wrestling a non-disabled guy, and neither of them was compromising with how much power they used. It was an excellent shock for Yuho to see an interaction that seemed so equal between disabled and non-disabled people.
All of these people at the Hanami were members of a national organisation called Aoi Shiba no Kai (Green Grass Association). Persons with CP formed the Association. She was attracted to the group and started spending time with them. Together, they advocated for access in stations, buses, and public areas. Sometimes they would do a sit-in protest in a station and stay there until the manager of the station came to talk to them, or the police came to remove them.
The group’s aim was to deinstitutionalise and build a society where people with severe and multiple disabilities could live safely in the community. They believed this was the most effective way to confront ableism and discrimination. The organisations principles were:
We identify ourselves as people with Cerebral Palsy (CP). We recognize our position as “an existence which should not exist”, in modern society. We believe that this recognition should be the starting point of our whole movement, and we act on this belief.
We assert ourselves aggressively. When we identify ourselves as people with CP, we have a will to protect ourselves. We believe that strong self-assertion is the only way to achieve self-protection, and we act on this belief.
We deny love and justice. We condemn egoism held by love and justice. We believe that mutual understanding, accompanying the human observation which arises from the denial of love and justice, means the true well-being, and we act on this belief.
We do not choose the way of problem-solving. We have learnt from our personal experiences that easy solutions to problems lead to dangerous compromises. We believe that an endless confrontation is the only course of action possible for us, and we act on this belief.
(translated by Nagase, 1970)
Yuho was one of the non-CP members of Aoi Shiba no Kai. As someone who did not have a speech impairment, she was often on the frontline of negotiations. She was aware of the power that came with that. She always had people with the most severe and multiple disabilities at the centre of her mind. If she did not act accordingly, aligning with the views of the entire group, she was told off.
Taking action with the Association empowered Yuho to decide to live independently away from her family; this was something she thought was never possible when she was younger. Together with her friends, Yuho made flyers and recruited volunteers who could support her to live independently, because she was away from family support. At that time, there was no specific financial support for disabled people nor a system for personal support.
Yuho and her friends cultivated a new type of relationship with the volunteers, where disabled people’s self-determination was respected. They did not leave any room for paternalism. Independence was realised by being able to shape how you would want to be supported. When she was in her late 20s, Yuho went over to the US to learn about their independence movement. When she came back, she established the first Center for Independent Living (CIL) in Japan together with a few other people. Through years of advocacy, there is now funding available, so disabled people can have paid support workers to support their independent living. This movement has grown, and there are 130 CILs around Japan now.
The system is still in progress. There are limitations, and hours of funding are often not enough for many disabled people. However, the enduring fight and advocacy of the Association allowed me to grow up with great support. When I was young, I was unashamed of asking for help at all. Up until I was five, I loved going to the toilet with one of the support workers who were at home then and asking them to clean me after. I thought it was great because it meant my hands would not be dirty, and it made more sense because my arms were too short to reach my bottom. Yuho thought it was great that I was so unashamed. She saw the success of her activism realised in me.
Living with support workers was Yuho’s mission. It is a way to show to society how disabled people can live independently away from institutions and family. She also took on the responsibility to recruit and raise good support workers for other people with more severe disabilities. Many of the support workers we had were University students who did not know how to do housework. My mother would teach them to cook, clean, and do general things around the house. Thus working in our house allowed them to gain life skills. Also, after spending time in our house, these students could then start going to other people’s places as support workers. The relationships we had with support workers were always earnest rather than professional. Yuho invested a lot of herself into each of the people around us as she believed that only through creating a relationship, respect for your independence is possible.
Currently, I live with my flatmates without any “support workers.” It’s a little bit tricky because I am on my work visa, and if I say anything that remotely suggests that I am not ‘independent’ that could be used against me. However, I am comfortable asking for help still, and I believe that has helped me create a good community around me. I want to continue my mother’s legacy through building relationships with people. Enabling disabled people around me to realise there is no shame in asking for help, help is how we gain independence, and we can define independence on our terms.
MORE OF UMI AND YUHO’S STORY: https://www.youtube.com/watch?v=xqaufVBHTXo
MORE TO WATCH ABOUT THE DISABILITY RIGHTS MOVEMENT IN JAPAN: https://www.moma.org/calendar/events/5590