Content warning: 10:04-11:03; discussion of consequences of the murder of a disabled child; 18:30-21.47: discussion of familial disability shame in the wake of the Sagamihara stabbings (intentional murders of disabled people)
Umi
it seems like it’s crucial that you’re not dependent on other people to be able to be independent. But in our understanding, we can be independent when we have the autonomy over the decisions and actions we make.
One of the strand of the Centre for Independent Living movement was advocacy and empowering each other through peer counselling and getting together and learning from each other.
Áine
Welcome to Disability Crosses Borders, a podcast and blog featuring stories where disability, migration and culture meet. I’m your host Áine Kelly-costello and today I talk to disability researcher and advocate Umi Asaka. We explore disability advocacy, especially the independent living movement, in Japan and New Zealand. And Umi tells us about the roots and legacy of her mother’s advocacy.
[Music fades out]
I’m talking to Umi aAsaka, it’s great to have you on Disability Crosses Borders. Welcome Umi.
Umi
I’m very happy to be here today. So my name is Umi Asaka.
I was born in a small city called Kunitachi in Tokyo, Japan. I moved to New Zealand when I was 14 after the earthquake and the nuclear power stations accident that happened in the northern part of Japan. And at the moment, I live in Ōtepoti, Dunedin. As I finished my study two years ago, and I’m a researcher-to-be. I’m a junior research fellow at The Donald Beasley Institute, at the moment.
I have a condition called osteogenesis imperfecta, which makes my bone fragile. So I identify as a disabled person, I have a physical disability. And I’m proud of that identity, and I see disability identity as something that can be tricky for many people. But for me, I have a mother with the same condition. And so I’ve had a role model for my entire life. And I think that has made it easier for me to be proud of who I am.
I love crocheting and cooking, and talking with people and having connection with nature.
Áine
Awesome, thanks so much. Can you talk a little bit more about the influence that your mother has had on you, and how you sort of came to understand your disability identity growing up?
Umi
Sure. So my Mum is a strong activist in the disability space in Japan. To talk a little bit about her background, so when she was born, she was given a lot of different medical interventions, including male hormone injections, eight different surgeries and tonnes of X rays and different things. When she was 13, she decided that these interventions weren’t useful for her. So she decided that she doesn’t want it. But she had a pretty hard teenage-hood, and not easy time navigating in the society where disability was so stigmatised and medicalised. But when she was around 20, the disability movement was starting up in Japan. So she became really connected to that movement and aware that disability isn’t something to be ashamed of. But you can use that identity to reach out and create a society where people can support each other.
So when I was born, she was living with a few of her friends and her partner, my father, and we had support around us all the time. And she was really conscious of how to raise me up in a way that I can also be comfortable in asking for support and knowing how to ask for support. And yeah, I never felt limited with my disability because even when I had broken bones, when I was younger, I could ask people to play with me in the way that I wanted. And I actually asked people to even carry me on like a flat board to the park or to different places when I had broken bones. So like, at the worst state of my condition, I still had some kind of autonomy and freedom, through having support from other people. And that’s a very unique experience actually. So, she really showed me how you don’t have to limit yourself.
Áine
Yeah, totally. And that’s so empowering to see being able to ask for the support you need as a form of autonomy. Your mother was a founding member of the Centre for Independent Living movement in Japan, do you want to talk a little bit more about what Independent Living means for her and for you as well.
Umi
Independence is often seen in a way that you have to … you are independent when you can earn your living and being financially independent, or you can do things by yourself on your own. And it seems like it’s crucial that you’re not dependent on other people to be able to be independent. But in our understanding, we can be independent when we have the autonomy over the decisions and actions we make. So we see that even when we are getting other people to achieve the actions that we want to achieve, when we are the one who’s driving that action, then we are independent. So a very practical example is she cooks, her cooking method is voice cooking. So she cooks by telling people the action of each steps of the cooking, and then her support person does what she says to. And at the end, she has this dish that she made with the support that the support person, but we still see this process as your independence. It’s a lot of … process and navigating to figure out how you can actually give clear direction, so that you can achieve what you really want. And it can be tricky sometimes and not easy all the time. But yeah, I really, I feel it’s easier for me that I don’t have to do everything by myself, and I can ask other people to help me reach what I want to achieve. And you’re still counted as independent. Some people can conceptualise this as radical dependency, and I like that.
Áine
That’s really powerful to, in the cooking example, to see, being able to have that kind of self determination and autonomy over how the cooking is done, as something empowering that is, in essence, a form of being able to, you know, live the way you want to and be part of independent living in a really holistic sense. Radical dependency is awesome, because ultimately, all of us are, you know, dependent on on others and on the world around us in different ways. And as part of dismantling ableism, it’s really important to be thinking about those, you know, interdependent relationships too. Your mother was also instrumental in the group Aoi Shiba no Kai or Green Grass Association. I wondered if you could talk a little bit about its philosophy, and any kind of main achievements of the group and whether it still exists.
Umi
Sure. So Aoi Shiba no Kai or the Green Grass Movement or association is, I think, one of the most radical civil rights movement that happened in Japan. Many of the civil rights movement, or like, activist movements in history doesn’t have achievement or successes, unfortunately. But Aoi Shiba no Kai has really created huge change in Japan. It started by, a mother who could not take care of her son with cerebral policy anymore, ended up killing her son. And but when she appeared in court, there was a movement by other people that her sentence should be really … not too punishing. And after these kind of reaction happening in society, people with cerebral palsy came together and said that actually, our lives matter, so that she should be sentenced in a way that normally that people who kill somebody should receive. There’s a lot to unpack in this one too but we’ll just put that aside.
And that was the start of the movement. And so it was formed by people with cerebral palsy in Japan. And they had five principles which were really radical. So the first one was:
◆We identify ourselves as people with Cerebral Palsy (CP).
We recognize our position as “an existence which should not exist”, in the
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 a 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.
◆We deny able-bodied civilization.
We recognize that modern civilization has managed to sustain
itself only by excluding us, people with CP. We believe that creation of
our own culture through our movement and daily life leads to the
condemnation of modern civilization, and we act on this belief.
So that’s the five principle that they used to create a movement. And I think it’s very powerful.
And some of the things that they achieved is to really bring people out of institutions, so many people live, and still live actually, in big institutions in Japan. The treatment and the situation inside of these institutions are not so great. So they came out of the institutions and started to live in the community, and through that they have lobbied for government funding for support workers, and also financial benefits for disabled people to be able to live in the community and creating access transport in the public transport system. And those three are the main things that they really pushed and achieved.
Unfortunately, the original Association itself that is not there anymore and many people who are the central member of the association has aged and many of them has passed on unfortunately, but some people are still alive and is really instrumental part of the Living Centre for Independence Movement, and Centre for Independence in Japan. We have around 200 of them across Japan.
Áine
That’s incredible that there’s 200 Centres for Independent Living across Japan, could you talk briefly about what a Centre for Independent Living actually is concretely?
Umi
Sure. So in my understanding, it’s a place where disabled people ourselves, provide support for disabled people to be able to live in a community. So it goes from advocacy work to peer counselling, and really empowering work. And also training support workers and getting the funding from the government, and allocating those funding so that the disabled people can be supported by the support workers they train.
Áine
Awesome, thank you. To what extent do you think disabled people are visible and represented within Japanese society, for example, like at school or on the streets and workplaces and in Parliament’ as well
Umi
Good question. My experience is pretty unique because I grew up in the city with the highest proportion of disabled people. And it’s partially because my mum has lived in that city and has created a really good relationship with the local government. And the support that disabled people could have in that particular city was so much better than elsewhere. So many disabled people, as a result moved to that city. So, growing up, I saw quite a few disabled people in town, and we were quite visible part of the city. But unfortunately, that’s not really the case, in other places in Japan.
And certainly, those big institutions still exist, like I said before. And there are not too much representation in media or mainstream visible places. And our education is still quite segregated, also. So we have a long way to go in that sense.
But in 2019, we have a national election, for the members of parliament, and three people in a wheelchair, and two of them in the almost bed wheelchair, like it cannot be manoeuvred by yourself kind of wheelchair elected to the Parliament. And so, currently, we have three wheelchair users in the parliament, and slowly, it’s making changes to the way disabled people are seen and supported in society slowly, I think.
Áine
Yeah, that’s fantastic. Because having disabled people, especially people with visible disabilities, the fact that they have the mandate, that you know, enough people voted for them that they got into parliament, that’s powerful in itself, in terms of public opinion, hopefully starting to shift in terms of understanding the real value in that.
[music: four forthright piano chords]
Just a trigger warning that we’re going to be talking about the murders of disabled people next. So if you need to bow out of this section, feel free to do that.
Five years ago, there was a horrific disability hate crime. 19 disabled people were murdered, and 26 were injured in an intentional stabbing committed by a former staff member in a residential care facility. And some families didn’t want to release the names of those who were murdered. viewing this as bringing shame on their families, as I understand. Do you have thoughts on how the sense of familial shame around disability plays out within Japanese culture? And do you have a sense of whether it’s lessening or changing in the wake of the Sagamihara stabbings?
Umi
I wish it was lessening. But unfortunately, I don’t think at it’s changing much at this point. This year was five years since that incident, as you said, and as of this year, five families have decided to release their family member’s name in the public. And that’s five out of 19. It’s really sad that, one of the story I read was that they were forced to move to another city because of having a disabled family member and their neighbour was really horrible to them, by having that family member. So they felt really ashamed and was threatened and unable to accept that family member into the family. So that familial shame is within the family but it’s really reflected by how the society sees disability. It’s really hard and shameful that, like it’s paradoxical to use the word shameful in this context, but shameful that disability is seen like this in Japan.
Áine
It’s awful that disabled people are just repeatedly potentially facing those kinds of beliefs within their own family and how their family are treated. But also just seeing that reflected in the media. Even if you come from a family with a really strong disability identity, like you do, must be really devaluing. And just really hard to, to keep working through that and to keep believing in, you know, autonomous, self determining empowering kind of disability identity that is so important.
[Short rhythmic piano interlude]
Can you tell me a little bit about how you ended up coming to New Zealand and getting involved in disability advocacy in New Zealand?
Umi
Sure. I came to New Zealand, when the earthquake, and the nuclear power stations accident happened in Japan in 2011. I was here for high school and university. and when I was at university, I started by studying psychology, and changed into social work part way through. And through my Social Work degree, I had a placement in a community organisation, which supported people with learning disabilities, and I had really, really good learning there. And, to be honest, I never thought I wanted to work in disability sector, because there’s kind of, there was unspoken expectation on me that I would be working in the disability area, by being a daughter of my Mum. And I didn’t want to fulfil other people’s expectation, doing that. But actually, I realised I had experience, that I can bring with me into this sector, and I can work with people. And really, I found my feet or like my ground, and where I want to be in this community through having that placement. So when I finished university, I came across a job opportunity at the Donald Beasley Institute, as a research assistant on monitoring the United Nations Convention on the Rights of Persons with Disabilities. And fortunately, I received that position, and have been able to stay on in that project and more.
And I’ve been really enjoying learning about the community and different ways we can communicate this broad community into the wider world. Like there are so much that has been done and so much that could be done. And I really enjoying talking to other people and learning from people’s experience. And also, having that tool of research as a method of advocacy. Advocacy and research is a separate thing, but research can provide evidence for advocacy, which is a really cool thing to do.
Áine
awesome. I’m interested in your thoughts comparing the way that independent living is kind of seen in Japan and New Zealand, and that advocacy space, more generally. Do you have any thoughts on sort of maybe what some similar challenges are and what some differences might be?
Umi
That’s also a really good question. The first thing that comes to my mind is that funding is the hardest thing in both countries. It’s a constant battle to secure funding to actually achieve the independent living that we dream of and also live in. And I can see it’s a challenge in both countries.
But interestingly, when I learned the history of disability movements or disability organisations in New Zealand, many of them has been started by their families or allies, often. However, many of the main organizations that provide support in Japan are established by disabled people. And I feel like there are difference in philosophy of how people are supported in some way, in the organisations in Japan and New Zealand.
In other way, disability movement in Japan was led by people with physical disability. Whereas a strong disability movement in New Zealand, I see was done by people with learning disability or deinstitutionalisation movement was for people with learning disabilities. So there are slight difference in who was the central part of the deinstitutionalisation process. And that I think creates different focus in that community and movements, and I find that really interesting and fascinating.
Áine
Yeah, for sure. In the first episode of Disability crosses Borders, we looked at the horrific disability discrimination in New Zealand immigration requirements, and do you know whether the situation for disabled people wishing to immigrate to Japan is similar?
Umi
Unfortunately, the immigration system of Japan is worse. And I actually don’t know much about what it’s like immigrating as a disabled person, to Japan. But to give you a broad perspective, we only accepted 72 refugees two years ago, before the Covid. So it’s a very strict system. I don’t imagine that it’s actually better than New Zealand in any way.
Áine
Is there something you think that New Zealand disability campaigning and advocacy can learn from Japanese disability organisations? I’m quite interested as well, and how you were mentioning the disability-led nature of a lot of the organisations in Japan, but maybe also the strength of that sort of Centres for Independent Living movement there.
Umi
Yeah, I think one of the strand of the Centre for Independent Living movement was advocacy and empowering each other through peer counselling and getting together and learning from each other. And I would love to see more of that happening in New Zealand. I think there are some communities starting up throughout the country, but generally, I haven’t been able to meet too many other disabled people in my community. I live with my flatmate who has disability herself. And I have friends and I know visible people in the community. But I’m sure there are many more disabled people than the people I already know. And I would love to have a space where more people can be more visible.
In other way, I think Japan can learn more about how to be more inclusive towards people with learning disabilities, and there are Independent Living Centres which has started supporting people with learning disabilities a while back. But it didn’t start from the beginning. And I think that’s quite interesting. And that area is much more to be improved and developed on. And in some aspect, New Zealand, I think has done quite a bit and know quite a bit around this area. So yeah, there are a lot that those two countries and disability community can exchange and learn from each other.
Áine
Thank you so much. Was there anything else that you’d like to add or talk about?
Umi
I think that I’m really happy to finally be able to start learning about the disability community in New Zealand because when I first moved here, I was living in a very small town in the north Island. And there was no other disabled person that I could meet. And even when I came to university, I was still quite disconnected from the disability world. So I didn’t know anything about any of the organisations. But being able to learn and slowly meet more people, I feel more grounded and connected in this country, as well. So I’m very grateful for the acceptance that I received from the disability community in New Zealand.
[Short rhythmic piano interlude]
Lastly, I’d love to say that disability is a way to actually build a peaceful society, and rather than creating conflicts and war or those things, we can focus on creating a society where we focus more on building a supportive community. And I think disability can be a central part of building that supportive society. So disability is a way of building peace.
Áine
Umi Asaka, thank you so much for your insights and for this conversation on Disability Crosses Borders.
Umi
Thank you, I was very happy to be here. Thank you Áine for doing this podcast.
Áine
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