I’m pleased to report that I’ve more or less recovered from the bug that I had last week, although my energy levels are still not back to 100%. Nevertheless, I managed to make a lot of progress this week and I look forward to sharing with you all!
On Monday, a visitor from the local ward office dropped by my apartment to check-in and make sure that my caregiving hours are working as they should. I told her that five hours a day (187 hours a month) was simply not enough coverage to make my life work. After all, I may be able to get in and out of bed in the morning/evening, but what about using the bathroom or going out during the day? To my surprise, the ward office representative let me know that my current arrangement was already three times more than they’d ever allotted to any one individual. In fact, she’d come to tell me that I had to cut my hours down so that they’d be closer to the previous max (60 hours a month). For comparison, I received 22 hours of coverage a day in the United States, so I could hardly believe my ears. With little alternative, I cut my hours down even further, and although I’ve yet to find a solution for making up those hours I’m optimistic I’ll be able to work something out (even if it has to come out of pocket).
Unsurprisingly, the rest of my Monday was a bit of a drag. I tried to cheer myself up by working on my upcoming conference presentations (I have two this week: one at the Mid-Atlantic Region Association of Asian Studies and another at the Japan Student Services Organization), but in the end I couldn’t shake my exhaustion (and fear of future exhaustion). I did a bit of translation work, took a nap, and before I knew it Tuesday had come.
On Tuesday, I decided to spend most of my day inside. I knew that the more I went out, the more I risked putting myself in a precarious situation, both physically and emotionally. Therefore, I stayed in bed and transcribed a couple of recent interviews that I’d conducted with leaders of Japan’s disability rights and independent living movements. The irony of my situation was not lost on me as I proceeded to write down page-after-page of anecdotes from persons with disabilities who had encountered systemic barriers that limited their freedom. And yet, inscribing their voices along with my own was in a sense empowering and therapeutic: I, too, was part of a larger narrative that will bear out its own consequences and rewards. While I don’t wish to cast myself as a martyr, I do hope that my current struggles will make others’ lives easier in the future.
On Wednesday, I took my emotional upswing as an excuse to venture out into Tokyo and participate in a couple of events. One of my academic advisors at the University of Tokyo, Dr. Shin’ichiro Kumagaya, was due to give a keynote address at a conference held at the National Diet Building, so I made my way over there. His address, entitled, “What Can We Do to Eliminate Hate Speech from Politicians?” was really interesting and focused on the psychosocial origins of stigma. It was buttressed by speeches from various Diet Members and organizations of individuals that have recently been subject to political hate speech, including but not limited to disabled, LBGTQ, and and foreign populations. The event showcased how solidarity and kinship can be borne out of mutual experience of discrimination in a profound and visceral way, and I hope it generates positive change in Japan’s political arena.
After the conference concluded on Wednesday, I went out with two leaders in Japan’s disability rights community: Kyoko Hayashima and Masami Morigami. Both have deep ties to DPI Japan, and we had a great conversation over dinner about their experiences in working with the disabled community. I also had the opportunity to share a bit about my own research with them and they were excited to hear about the work I was doing (or, at least, it appeared that way!) I look forward to continuing our conversation and meeting some of their contacts, including but not limited to Masayoshi Imanishi, an expert on Japan’s adoption of universal design, and Shoji Nakanishi, Chairperson of the Japan Council of Independent Living Centers (JIL) and President of the Human Care Association.
On Thursday, I was still in the mood to go outside so I went to my old stomping ground: Sophia University. I initially studied at Sophia University as an undergraduate in the Spring of 2013, and while I’d been back to visit during my time as a Fulbright scholar (2014-2015) this time felt different somehow. After rolling around campus for a bit, I stopped by the office of Thierry Robouam, a French Jesuit Priest whose course, “Philosophic Approaches to Buddhism,” was my first introduction to Religious Studies in Japan. Thankfully, Dr. Robouam was in his office, and we had a delightful time catching up. I also had the opportunity to ride down the hall and meet with Dr. Edward Drott, a fellow Penn-grad and scholar of Japanese Religion whose work on pollution and aging bodies I’ve always admired. We spoke a bit about an upcoming publication of mine on disability in medieval Japan and my dissertation project before parting ways. I had another event to get to, and so did he! Still, before we shook hands, he let me know that he had some contacts he wanted to put me in touch with who work on marginal populations (more specifically Burakumin) in Japan. Again, it seems like great opportunities are just around the corner!
As for my ‘other event,’ I attended a roundtable on the Olympic and Paralympic Games at the German Institute for Japanese Studies entitled, “Tokyo 2020 and Beyond: Legacies from Hosting the Olympic and Paralympic Summer Games.” The event featured three sociologists of sports, who offered their opinion about the history and economic implications of the games: Munehiko Harada and John Horne of Waseda University, as well as Wolfram Manzenreiter of the University of Vienna. Perhaps unsurprisingly, their discussion focused almost entirely on the economic implications of the Olympic games, with the Paralympics only coming up as an afterthought during the Q&A. When it was time for my question, I made sure to bring up the infrastructural legacies of the games (physical, cultural, educational, and otherwise) that might affect persons with disabilities, and the whole room of thirty people audibly gasped when I mentioned that Japan’s number of accessible hotels was expected to change from a whopping 0.4% to 1%. Apparently, my work still has the capacity to bring ‘shock and awe’ into the conversation. I wish it didn’t.
On Friday and Saturday, I returned to my ‘cave’ and spend the days reading, writing, and translating. I broke 20,000 words of translated text from Akira Sugimoto’s “How Have Persons with Disabilities Lived? A History of Disability Movements in Japans Pre/Postwar Periods,” and began to conceptualize another article that I may write in the near future. For those unaware, the Green Grass Society, which is often heralded as the nation’s first cross-disability rights movement, was forged out of Buddhist ideas about original enlightenment thought and the nature of evil. There’s a paper waiting to be published about the connections between Buddhism and disability rights in Japan, and I think I’m among those most qualified to do so. Still, I have a lot of other things on my plate right now, so we’ll see what happens.
Anyway, looking forward to the coming week, I have a lot going on. Tomorrow, I have an appointment at the hospital and I’m due to catch up with my primary dissertation advisor from Penn, Dr. Jolyon Thomas. I have class on Tuesday, multiple meetings on Wednesday, workshops on Thursday and Friday, and two conferences on Saturday. It’s going to be busy, to say the least.
As always, thanks for reading, and I look forward to catching up with everyone soon!