Intergenerational aspirations: My mother is a visionary and a dreamer

Matariki is a time of connection, remembrance and aspiration. Growing up in Japan, new years celebrations were always in winter. Therefore, celebrating a new year in winter feels just right. New Year in Japan is also a time to reflect and make wishes for the year to come. 

My mother is a visionary and a dreamer. When she was young, things were difficult. Despite the dark place she was in, she dreamt of a future where she would travel with a little girl in a wheelchair like hers. Many years later, she found out that she was pregnant with me. She knew that the baby would be a girl and have the same disability as her. Her prediction was on point. When I was born, my mother decided she would create a world around her where her baby could love herself for who she is. 

We have travelled around the world together in our wheelchairs and she has installed love and confidence in me. However, this did not come easy. The cost of this achievement (of travelling together and creating a safe world around me) was that she was often a busy, impatient and angry person when I was little. She was angry about injustices experienced not only by our disability community, but many other oppressed communities. However, as a young girl, I did not like seeing her anger nor appreciate why she felt that way. 

Now that I’m in my late 20’s and she is in her late 60’s, we have switched our roles a little. She is not as angry as she used to be, in fact, she says she feels a calm that she’s never felt before. As for me, I am not as angry as she used to be, but I definitely feel impatient about the world. 

One of the biggest crimes of this world is to doubt the value of disabled lives and arranging society in ways that lead to that doubt.

The other day I went to a new dentist. He told me hesitantly that as a young woman ‘unfortunately’ with Osteogenesis Imperfecta (OI), that my teeth were breaking down. But my happy-go-lucky ear heard “as a young woman ‘fortunately’ with Osteogenesis Imperfecta”. I was excited about what I misheard for a second, but realised that he probably said ‘unfortunately’. At the end of the consultation, he asked me if I had any questions. So I asked if he said ‘fortunate or unfortunate’, because I was excited by the thought that he said ‘fortunate’. He clarified that he said ‘unfortunate’ so I clarified to him that it was actually ‘fortunate’ for me to have OI, that I would like him to stop making assumptions about my condition. He was surprised but accepted my clarification and thanked me for correcting him. He was lucky I didn’t charge him for this lesson.

Don’t get me wrong, my teeth breaking down in my 20’s is not fortunate. But my condition is part of me, and even if he meant OI as a separate condition from myself, it does not work like that for me. There are some challenges including my teeth that are inherent with OI, but most of the ‘unfortunate’ things come from the way society is set up. It does not make OI nor my presence an ‘unfortunate’ thing.

In fact, the idea that disability is an unfortunate thing had led to the establishment of a law in Japan which allowed disabled people to be forcibly sterilised without their consent between 1948 – 1996. As a result, more than 16,000 people were subjected to this treatment during that time period in Japan. Our condition, OI, was included as part of the list of the conditions that were considered ‘unfortunate’ and ‘defective’. When she was young, my mother remembers seeing a sign which said “Surgery to prevent the birth of ‘unfortunate babies’ available here” at the hospital she used to go to, and felt absolutely rejected by the world.

These realities were the source of her anger. It fuelled her enough to be part of the disability movement and feminist movement which took her to the United Nations International Conference on Population and Development in Cairo, Egypt in 1994. There, she appealed to the international audience about the discriminatory law in Japan. It gained enough attention from the international media, she was asked to meet with the Minister of Welfare at the time when she returned to Japan. Along with many other disabled people and allies’ activism, the clause which allowed the forced sterilisation was deleted from the law in 1996. It happened to be the year I was born. 

On the 3rd of July this year, “the Supreme Court ordered the state to compensate the survivors of the forced sterilisation despite a 20-year status of limitations”. The Court ruling concluded that disability cannot be a reason for discrimination.

Outcomes like this are never heard of in Japan but it shows what happens when society shifts away from the narrative that disability is an unfortunate thing. This shift is only possible because of our presence in the world. I draw strength and joy from being around other disabled people and it helps me to think about aspirations for the future.

To celebrate Matariki, I had the joy of attending the Matariki wānanga at Terenga Paraoa Marae in Whangārei. It was so special because I felt so safe and whole among the presence of other fellow whānau hauā, disabled people. Everyone just stepped into what was needed and nothing felt like a barrier (at least from what I experienced). We didn’t need to explain our disability or justify our existence. Instead, we just got to enjoy each other’s company.

At the end of the wānanga, one person who welcomed us at the Marae said ‘I didn’t see disability at this wānanga’. I would usually feel that it’s not a compliment because seeing disability doesn’t have to be a negative thing. But in this context, how I interpreted it was that he didn’t see our disabilities as a barrier for us to enjoy our time at wānanga. 

So my aspirations for not only this year, but many more years to come until it’s achieved, is to have more space where we get to share as disabled communities, and for a world to value our disabled lives just as we are. With the court ruling that happened in Japan recently, it feels more possible for this to happen as well. And I hope someday that these wishes can be something that we can take for granted.

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