Crowds, Robots, and Disability

Hey all,

Apologies that this entry is coming a day late. To be honest, it’s been a very tiring week, and as longtime readers may know, I’ve hardly taken a break since arriving in Japan six weeks ago! This week was filled with interesting excursions, some of which I’ll describe below!

Starting this past Sunday, I began to receive services from multiple caregiving companies in Japan. Although it’s only been a week, I’ve learned much about the Japanese caregiving system. For instance, caregiving time is incredibly structured: I have to use the toilet between 1-2 allotted hours in the morning and I’m only allowed outside with a caregiver for one hour in the afternoon three days a week. Even then, I’m only permitted to go shopping or participate in ‘cultural activities’ – school, research sites, etc. are all off limits. In the evenings, I have to eat and get a shower in the 2-3 hours that I’m allotted, and I must be home/available during all hours set by the caregiving company. If I do not give 24 hours notice that I would like to cancel my services for the following day, I’m charged a fee of around $15. In other words, I cannot participate in spur of the moment activities from here on out without significant penalties.

Of course, structure isn’t everything. I’ve found the quality of services that I receive here is generally much higher than that which I received in the United States. Perhaps this is because of the group caregiver training sessions, which in my case began on Monday. On that day, I had approximately five caregivers enter my apartment at the same time and collectively work with me to figure out what my needs are and how they might by addressed. As I discovered, such group training sessions are not one-time events, and I had between two to four caregivers enter my apartment approximately seventeen times throughout the week. The coming and going was rather exhausting, as was the constant poking and prodding necessary for ensuring adequate training. Still, I’m sure that I’ll be better off in the long run.

On Tuesday, I spent most of my morning translating bits and pieces of Akira Sugimoto’s How Have Disabled People Lived [in Japan] – A History of Pre/Postwar Disability Rights Movements 障害者はどう生きていたかー戦前・戦後障害者運動史. (2008) The book is an incredibly interesting (and dense) read, which has helped nuance my understanding of legal attitudes toward disability (or at least disability welfare) in Japan at various points in time. While I’m pleased that a lot of Sugimoto’s writing and evidence backs up my theory about the progression of disability movements in Japan, I’m even more excited about the new things I’m learning from it. For instance, in the postwar period, it might be said that the only reason disability welfare came into being was a GHQ mandate that Japan completely demilitarize and cease to provide exclusive treatment to former soldiers. Japanese authorities, many of whom still wanted to provide aid to soldiers, found a way to appease GHQ by expanding their welfare policies to encapsulate broad swathes of Japan’s disabled population – at least rhetorically. In practice, the expansion of Japan’s social welfare laws didn’t necessarily result in better treatment for all persons with disabilities, as the end goal of social welfare and modes of enacting it still privileged certain parties such as wounded veterans and their families. Nevertheless, the scope of individuals able to benefit from social welfare did increase, breaking open the floodgates for further developments. I could talk about this all day….really exciting stuff! But at the end of the day, this is not a research blog so much as a personal repository, so I’ll leave it for the dissertation.

Also on Tuesday I attended another class on “Interested Parties” taught by Shin’ichiro Kumagaya. This time, we spoke about some of the ways in which various independent living movements and self-help groups construct ideas about truth and progress. Surprisingly, much of our lecture boiled down to the philosophy of Hannah Arendt and Jacques Lacan, both of whom seem to have had a significant influence on Japan’s disability movements over the last couple of decades. I also had the opportunity to share a bit about by past travels to and from Japan and the way in which I’ve constructed my own truth regarding the nature of accessibility. All in all, it was an intruiging lesson!

On Wednesday, I spent much of my day training my new caregivers regarding how best to help me transfer to-and-from my bed and shower. I also had the opportunity to speak with my care coordinator about purchasing some specialized equipment so that I can get make better use of my apartment’s amenities. More exciting was a workshop that I attended Wednesday evening about 24-Hour caregiving assistance for persons with ALS in Japan. The workshop, hosted by one of my professors at the University of Tokyo, featured a presentation from Kawaguchi Michiko, a prominent care coordinator who works with Japan’s largest ALS patient association. Ms. Kawaguchi wrote her doctoral dissertation about the use of ventilators in Japan at Ritsumeikan University a few years ago, and I found her research both interesting and relatable. She spoke about everything from the connection between euthanasia and advanced directives to problems of responsibility in Japanese caregiving. Her talk touched on many aspects of my own experience as individual embedded within the Japanese caregiving system, and I hope to follow-up with her sometime for an interview.

On Thursday, I attended the 45th International Home Care and Rehabilitation Exhibition at Tokyo Big Sight in Odaiba. I won’t say too much about the exhibit in this blog entry, as I’ve published a short blog entry about my thoughts on Accessible-Japan.com.  However, I will say that the exhibit afforded me an opportunity to catch up with some old friends in the disabled community. In addition to seeing Josh Grisdale and members of the STEP Edogawa community, I also saw Tatsuaki Saruwatari, a friend of mine who uses a wheelchair whom I met when I was studying abroad at Toyo University several years ago. It was great catching up! After returning from the exhibition, I spent some more time working on my writing and translation before grabbing a delicious dinner of fried chicken and rice. A good day, if I may say so myself.

On Friday, I spent most of my day recuperating from the week’s many excursions. I did a little bit of translation and searching for disability focused news articles, but on the whole I took a lot of “me” time.  If I did anything particularly productive, it was to go across the street and check out the venue for the upcoming Japan Student Services Organization Conference, where I’m due to present some of my work on disability and violence in Japan. Thankfully, the venue appears to be (relatively) wheelchair accessible, so I should have no problem when the time comes!

On Saturday, I attended a Universal Design Workshop and guided tour of the construction sites for the Olympic/Paralympic Stadiums. It was a really great opportunity to make contacts in the fields of architecture and urban development, and I met one individual in particular, Mr. Fukunaga, with whom I expect to collaborate in the future. Mr. Fukunaga works for an accessibility consulting firm focusing on public venues, and he seemed interested to hear about my perspective as a foreigner with a disability living in Japan. Although I only had the opportunity to chat with him for a little while and briefly mention my Accessibility Mapping Project, I suspect that we’ll be able to continue our conversation at some point in the near future.

On Sunday, I had the opportunity to meet and interview Mr. Koji Onoue, the Vice-Chairman of DPI Japan, about his life and involvement with Japan’s disability movements. Our interview lasted more than three hours, and I dare not recap all of it in this short blog post. Suffice it to say that we touched on everything from his growing up with Cerebral Palsy in Japan in the 1960s and subsequent involvement with Japan’s (in)famous Green Grass Society to his views on accessibility and accommodation in relation to the 2020 Paralympic Games. The interview was really informative for my research, and gave me an opportunity to speak frankly about my work with someone who had lived through much of the history that I sought to excavate. Truly, I was humbled when Mr. Onoue told me that he thinks my work is important and that I would be doing a service to Japan’s disabled community by publishing it. His words gave me the encouragement necessary to continue to plow ahead! I won’t let him down.

And that’s about it for this past week, my friends. I also have a lot of stuff going on this coming week as well, so be sure to stay tuned! For instance, I’m due to be interviewed by a reporter from The Japan Times about accessibility in Japan and give a presentation about transnational accessibility in front of 30+ Japanese scholars at the University of Tokyo, among other things!

Stay well, everyone.

 

 

 

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