Independent living and disability advocacy from Japan to NZ with Umi Asaka

A Japanese mother and daughter both using wheelchairs. They sit in front of a New Year's Concert stage in the city centre.
Yuho and Umi at a concert in Ōtepoti Dunedin. Photo/supplied

When Umi Asaka’s mother Yuho was born in Japan with a brittle bone condition, the medical establishment took over her body. Yuho was given male hormone injections, and had numerous surgeries till, at 13, she decided those weren’t what she wanted and from there, she slowly became connected with the national, then nascent, disability movement.

Umi, who has the same bone condition, speaks proudly of her mother’s extensive disability advocacy.

Listen to the conversation or read the transcript. 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)

“She became… 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.”

Thanks to this philosophy, Umi understood that there was no shame in asking for support, from her earliest years.

“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 a flat board to the park or to different places… So at the worst state of my condition, I still had some kind of autonomy and freedom, through having support from other people.”

She explains that there are more holistic ways to understand independence than self-sufficiency.

“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.”

Umi moved to New Zealand when she was 14, after the earthquake and Fukushima nuclear power accident. She now works in disability research, after finding rich learning through a placement in an organisation supporting people with learning disabilities. She was initially reluctant to work in the sector due to an unspoken expectation that, as Yuho’s daughter, she automatically would, and it also took some years before she had the chance to connect in with the disability community in New Zealand.

“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. … But being able to learn and slowly meet more people, I feel more grounded and connected in this country, as well.”

Reflecting on disability advocacy in the two countries, she says the battle for funding is a constant challenge for both. There are differences, too. Deinstitutionalisation was led mainly by people with physical disabilities in Japan whereas people with learning disabilities were at the centre of that movement in New Zealand.

“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. That area is much more to be improved and developed on.”

Equally, many of New Zealand’s disability organisations were started initially by family members or allies, whereas in Japan, most were disabled-led, especially by severely physically disabled people.

For instance, Yuho was heavily involved in a group formed by people with cerebral palsy called Aoi Shiba no Kai or the Green Grass Association. It was based on radical principles which condemn exclusionary able-bodied civilisation, assert a strong disability identity and promote endless confrontation rather than easy problem-solving , in seeking mutual understanding and true wellbeing.

Aoi Shiba no Kai was instrumental in campaigning for deinstitutionalisation and advocating for disabled people to live in the community. There are now over 100 Centres for Independent Living in Japan, led by and for disabled people, where peer support for community living is an important component.

Umi would love to see spaces for that kind of community-building in New Zealand.

“I live with my flat mate 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 the political arena, disability visibility is improving in Japan. In 2019, three Wheelchair users were elected to the Japanese parliament. In New Zealand, there is currently one openly disabled MP in Parliament, proceeded by a Deaf MP from 2011 to 2017

However, a persistent familial and social sense of shame and stigma towards disabled people, especially those living in institutions, lingers in Japan. In 2016, a former employee of one such facility intentionally committed a disability hate crime, murdering 19 disabled residents and injuring 26 others. Five years later, only five of the 19 families have publicly released the names of their disabled relatives.

There are ugly parts to New Zealand’s treatment of disabled people, too, some of which is starting to be acknowledged through an inquiry into abuse in state care settings.

Umi says there’s a wider picture of where disability advocacy fits in in transforming societies around the world.

“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.”

Follow Umi on Twitter: @asakaocean

By Áine Kelly-Costello

Blind freelance writer/journalist and campaigner from aotearoa NZ.

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