Activist with OI: Umi Asaka

Umi, who is originally from Japan, moved to New Zealand after the nuclear disaster in Fukushima back in 2011. Today, she is living in an accessible house on South Island together with three friends. Umi talks about her life and what it means to live in New Zealand as an immigrant with a disability.

My name is Umi Asaka (25). I am originally from Japan, and I moved to New Zealand almost 10 years ago after the nuclear power station’s accident in Northern Japan. I am a daughter of a strong disability activist, Yuho Asaka. I inherited OI from her. I think my relationship with OI has been quite unique because of this. I have broken mainly my left femur throughout my childhood, but I have never had surgeries for them, and I have not broken them since puberty. I always had a role model of how you can navigate this world and look after our bodies. It makes me think that if have a child, I would like to have a child who shares our condition, so that we can share our experiences with them. But of course, they can be born with or without OI or anything and that is great.

Can you describe a little where and how you live?

Currently I live in Dunedin which is South of South Island in New Zealand. I live with three other friends and out of four people, three of us are wheelchair users. Since it is my friend’s house it has been possible to modify the house to be accessible for us. All of my housemates can drive a car, and I am slowly learning to drive. One of my housemates has kindly let me use her modified car to practice driving in. I usually commute to my work by bus, and it is relatively accessible. By relatively I mean sometimes the ramp on the bus is very steep and I don’t feel safe. But I have been able to get on and off the bus. Major places are accessible, but of course there are cafes, restaurants and other venues that have odd steps to get in without any other access options.

How is the situation of people with a disability in New Zealand?

I think the situation in New Zealand is a mixed bag. You might have an image that New Zealand is a welfare country, and it is to some extent. The most positive thing is that big institutions have been closed. However, the health system and housing issue have been challenging for the whole community, and disabled people are still overrepresented in lower-income bracket. There is government funding for equipment, assistance and medication. However, the number of people eligible to access these are very cut-off and the waiting time is very long. There is actually no legislation for accessibility nor anti-discrimination. The government of New Zealand has announced an establishment of a Ministry of Disabled People (tentative name) and accessibility legislation within this year. The disability support system largely operates under western and coloniser’s perspective, so it often does not cater for the experiences of Māori (indeginous) disabled people. The public transport within a city is relatively accessible like I said, but there is no accessible transport between cities except for flying or driving yourself.

What do you do?

I studied social work at University of Otago, and I am working as a Junior Research Fellow at the Donald Beasley Institute (DBI). DBI is a national independent research institute for disability. One of our projects is Disabled Persons-Led Monitoring of UNCRPD (United Nations Convention on the Rights of Persons with Disabilities), where we interview disabled people across the country about their experiences relating to the specific topic we are monitoring at that time. Disabled people’s experiences are still quite invisible in the world, and our aim is to highlight the experiences so that much needed changes can happen. You can find more about the project here.

Are you active in an OI-organization?

I have a group chat with OI friends back home in Japan, but I have not been able to connect with OI community in New Zealand, and I would love to do so.

Tell us about your activities as an activist!

I have been part of a few different activisms, from climate actions, peace building actions to disability activism. The most recent one I have been part of is #EndASHNow!. In Immigration New Zealand, there is a policy called Acceptable Standard of Health (ASH) requirement, which effectively rejects people with disability and health condition’s visa applications if they are not granted with medical waiver. I have been part of the movement to scrap this ableist policy, and we have been supporting individuals and families who are impacted by this policy. You can find more about our work through @endashnow on twitter or on the webpage. This policy is completely inacceptable, and at the same time, I think our action is revolutionary. The immigration policy had eugenic idea from the beginning, and we are challenging that underlining discrimination that has managed to stay in this society until now.

“I went to support the bus driver’s action towards fair pay as I use the bus every day. Solidarity between movements is important”

What can we do as individuals to change the world for the better?

I think what we can do is to live the way we want to live. Just like the feminist slogan “personal is political”. Our actions to thrive to live better lives are effectively paving the path for next generations of OI and other disabled people to live better lives, just like my mother have paved the path for me. In order for us to live well, we cannot avoid confronting ableism, and for me racism and sexism. It can get tiring at times, but you also meet lots of people who are fighting the same fight, and the energy you gain from having these people in your life is invaluable. So I do encourage young people with OI to get out and learn about how ableism all the other oppression impact our lives, and to find people who can journey and navigate the world with. I could not do what I do right now without the people in my life, and having that community and support network is so crucial.

Any messages to the readers of the OIFE Magazine?

Although I have not been able to be part of OI community for a while, I love being around OI people. I love our optimism, cheekiness and strength. If you want to connect with me, I would love to hear from you  @asakaocean – twitter

“Being in nature is what I love, and New Zealand is a great place for that! Although many places are not so accessible, and I have friends who take me out into the wild.”

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