Reading and Writing

Hey all!

It’s Sunday, and that means that it’s time for a new blog post!

This past week I had the opportunity to venture out of the house on a couple of occasions and (re)unite with friends and academic advisors from various points in my career. I also began to write the first chapter proper of my dissertation, which focuses on the history of accessibility in Japan between 1920 and 1945.

On Monday, I got together with Dr. Scott Kupferman, a professor from the University of Colorodo whose research focuses on the use of co-design in education and engineering. I first met Scott at the “Co-Design and Tojisha Research Conference” held at the University of Tokyo last week. After speaking at that conference, we decided that we’d get together at some point in the near future and chat about our work in greater detail. We ended up meeting by the Statue of Liberty in Odaiba on Monday morning, and spent an hour or so walking around outside and talking about the history and politics of accessibility in Japan and the United States. It was interesting to hear about the development of Universal Design in the United States, which, surprisingly enough, I was not too familiar with despite my having grown up there. Somewhere along the way, I realized that I knew more about accessibility in Japan than in my ‘home’ country, and I was happy to share what I knew with my American colleague. I also spoke with Scott about my career aspirations and Accessibility Mapping Project, which he seemed to be really excited about. He recommended that I apply for a couple of grants to further develop that project – here’s hoping!

After meeting with Scott, I rushed over to Sophia University to visit the Council on International Educational Exchange (CIEE) and grab a cup of coffee with the interim director, Darren Biggs. Darren was a program assistant when I traveled to Sophia as a CIEE student in 2013, and we’ve become close over the years. We had the opportunity to catch up and share stories about the myriad changes in our lives that’d occurred since we last met in 2015. I told Darren about my transition from Buddhist Studies to Disability Studies, and how my work now seeks to create an accessible future by uniting scholars and activists from various arenas in an ongoing conversation about the needs and desires of persons with disabilities. Suffice it to say that we had a really enjoyable conversation, which concluded with Darren suggesting that I might teach a class for CIEE this coming summer if the opportunity arises. We’ll see!

On Tuesday, I spent most of my morning organizing my notes before rushing over to the University of Tokyo to meet with Dr. Satoshi Fukushima, my academic advisor. Dr. Fukushima and I spent the better part of three hours discussing my dissertation research in great detail as well as my current living and caregiving situation. He was fascinated by some of the theories developed by scholars of Critical Disability Studies in the West as of late, and wanted to learn more about how I will use them to analyze the development of disability movements in Japan. After explaining the one-hundred year trajectory of my research and walking through the sources and organization of my first two chapters, we had to call it a day. We ended on a high note, however, as Dr. Fukushima let me know that he wanted to get together again this coming week to hear about the rest of my project. He also suggested that he had many friends in Japan’s disability movement, some of whom have been involved since the 1970s, who he’d be happy to introduce me to for the sake of interviews or anything else I may need. Really, I couldn’t ask for more!

On Wednesday, I sat down to start writing the first chapter proper of my dissertation. All-in-all, the process went much smoother than I’d imagined, as I already had a fair bit of material to draw from in the form of seminar papers and the research portion of my comprehensive exams. I ended up writing about the ‘othering’ of persons with disabilities in Japan between 1920 and 1945 in relation to processes of industrialization, urbanization, militarization, and the rise of eugenic thought. I argued that those processes led policymakers and public intellectuals to identify persons with disabilities as ‘outsiders’ in need of assimilation through two primary strategies: isolation and rehabilitation. The former meant separation from their able-bodied counterparts in educational and vocational settings so as to allow both populations to operate at their own pace. The latter involved the strategic use of therapies and (re)organization of school and workplace settings to capitalize upon the remaining faculties of persons with disabilities. Neither strategy was without fault. Isolation demanded an investment of time and labor that was not always available, and rehabilitation exposed persons with disabilities and those around them to possibilities of compound injury and associated risk. By examining how Japanese policymakers and public intellectuals attempted to negotiate these difficulties, I identified their role in constructing discrete hierarchies of ability, disability, and debility in interwar and wartime Japan that governed the formation of new social movements.

On Thursday, I traveled out to Toranomon to meet with Ms. Masako Okuhira of the Sasakawa Peace Foundation and Dr. Gihei Takahashi of Toyo University. Ms. Okuhira is one of the leaders of Japan’s Independent Living Movement, and Dr. Takahashi is perhaps the nation’s foremost expert on Universal Design. We had lots to talk about, ranging from the history of barrier-free architecture to the future of accessibility in Japan. I was really interested to hear Dr. Takahashi’s take on the difficulties of enacting principles of Universal Design. He explained, for instance, that even if designers are able to gather information about the accessibility of a space using a democratic method, they still have to decide if the data they’ve gathered is representative of a larger whole and deal with internal inconsistencies. He also mentioned that many designers who conduct trial sessions and democratic surveys fail to share their data with competitors, leading to a lack of consistency in products on the market. I really look forward to continuing my conversation with Dr. Takahashi and collaborating in the future!

On Friday, I worked on my dissertation chapter in the morning before taking the afternoon to catch up on some reading. First, I re-read Lee Pennington’s Casualties of History: Wounded Japanese Servicemen and the Second World War (2015), which chronicles shifting attitudes toward wounded veterans in Japan between the Meiji period and the end of the Second World War. It also highlights the development of a veteran-focused welfare framework that explicitly excluded many persons with disabilities who failed to qualify for military service. Interestingly, Pennington all but ignores the topic of non-military persons with disabilities, failing to mention how the development of veteran’s welfare affected their lives. An opportunity for my own work, if ever I saw one! After finishing Pennington’s book, I went on to read a couple of articles such as Yumi Kim’s Seeing Cages: Home Confinement in Early Twentieth-Century Japan (2018) and Hanako Fujikawa’s Educational System Plan for the Deaf and Reform of the Tokyo National School for the Deaf by Unosuke Kawamoto in the 1920s (2005).  It was a busy day, but a productive one.

On Saturday, I spent much of my day writing and relaxing. I organized my research notes and worked my way up to completing the first 1/3 of the first chapter of my dissertation. Right now, I’m aiming to produce around 300-500 words a day so that I’ll be able to finish a chapter every two months. With five proper chapters, an introduction, and a conclusion, that will let me finish the first draft of my dissertation in around a year or so, leaving me another year-and-a-half for revisions before I have to submit. I’ve not run into any problems yet, but we’ll see what happens!

Today, I’ve spent much of my day resting and laying around in bed. I realize that my mental and physical wellbeing is incredibly important for my research to be successful, so I’m doing all I can to ensure that I don’t overwork myself. Besides, with everything else that I’ve been up to, I feel like I deserve a break every now and then!

And that’s about it for this week, friends! I have lots coming up next week, including but not limited to: 1) a meeting with Dr. Emiko Tanaka (a professor who’s involved in the Japanese Society for Disability Studies), 2) a workshop on barrier-free consciousness led by DPI Japan, 3) a lecture on the development of facilities for persons with disabilities by Dr. Akihiro Sugino, 4) a joint research meeting with Dr. Shin’ichiro Kumagaya and Dr. Satoshi Fukushima, and 5) a conference at the University of Tokyo on the history of student disability services in Japan. Stay tuned, and as always thanks for reading!

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Ms. Masako Okuhira, Dr. Gihei Takahashi, and Me at the Sasakawa Peace Foundation

Co-Design and Conferences

Hey all!

It’s been a very hectic week, but I’ve really enjoyed myself! There are lots of developments that I’d like to share on both the personal and professional fronts, so allow me to dive right in:

On Monday, I stayed in and finished reading/summarizing the last of Akira Sugimoto’s book on disability movements in pre/postwar Japan. I was thoroughly impressed by Sugimoto’s meticulous attention to detail in chronicling law and policy shifts related to disability in Japan over the last one-hundred-and-fifty years. Having said that, I found that his book was lacking much in terms of documenting and describing the influence of contemporaneous historical developments. Nowhere to be found in Sugimoto’s text were explorations of convergent discourses about art, culture, science, and technology that held equal if not greater sway over the structuring of Japan’s disability movements since the Meiji period. Indeed, Sugimoto’s incredible focus on social welfare policy seems to have distracted him from observing the implications of such broader discourses on the lives and activities of persons with disabilities in Japan. This is not to say that I found his study to be without merit: on the contrary, I found it to be incredibly valuable in terms of its general periodization of disability justice in Japan. In my dissertation, I hope to build upon the framework it provides by speaking to the influence of some of the convergent discourses described above and also extending its temporal scope into the present.

On Tuesday, I spent most of my morning cleaning the apartment before heading off to class at the University of Tokyo. This week’s lecture focused on the psychological underpinnings of trauma and stigma as related to various theories of mind. Dr. Kumagaya explained that experiences of stigma and/or trauma represent breaks in one’s life narrative that create conflict and demand suturing via introspection and communal exploration. His explanation included a model of the mind which saw experiences of stigma and/or trauma as liable to spread and infect other parts of a person’s psyche. This model, I told him, reminded me of some theories of mind that I had encountered some time ago during my time as a self-identified Buddhist Studies scholar. More specifically, theories of mind related to the origins, spread, and dissolution of defilements like those explained by Kukai in his Himitsu Mandala Jujushinron. Intrigued, Dr. Kumagaya asked me to elaborate on my explanation, and the rest of the class turned into a discussion of Buddhist attitudes toward stigma and trauma. I had a blast.

On Wednesday, I got together with two friends and walked over to the National Museum of Emerging Science and Innovation, which is just outside of my apartment complex. I really enjoyed rolling around and seeing exhibit after exhibit dedicated to robots, cyborgs, environmental sustainability, and data conservation/management. While I was hoping to see a bit more about classically defined assistive technologies, I did see a few things that caught my eye. First, a robot called Asimo that was able to walk, talk, sing, dance, and, importantly, communicate via Japanese Sign Language. I was really impressed by Asimo, but my heart was stolen by an extremely cute therapy robot called Paro. Paro is a robot seal that was originally designed to comfort and assist persons with Alzheimer’s, dementia, and related conditions. It’s since been used by disabled children and adults around the world as well as their ‘able-bodied’ counterparts. I found myself petting Paro for a solid ten minutes before heading upstairs to watch a video in the planetarium. After finishing up, I headed back downstairs and grabbed dinner with a new friend, Lucas, who lives in my complex.

On Thursday and Friday, I participated in a two-day workshop dedicated to Tojisha research and co-design at the University of Tokyo. The workshop featured multiple speakers including but not limited to Dr. Scott Kupferman (Colorado University, Director of the National Collaborative for Disability and Technology), Dr. Shin’ichiro Kumagaya (University of Tokyo, Tojisha Research Lab), Dr. Satsuki Ayaya (University of Tokyo, Tojisha Research Lab), Ms. Harue Kamioka (Darc Women’s Halfway House), Dr. Yukie Nagai (Osaka University, Cognitive Developmental Robotics), and Mr. Ikuyoshi Mukaiyachi (Health Sciences University of Hokkaido, Social Work Division). Now, I’ve written about fifteen pages of notes related to the workshop that I dare not include here. Suffice it to say that each speaker addressed a central theme from their own perspective. Namely, how do we establish a system where persons with disabilities can co-design products and services with experts in various fields and what are the merits of doing so. Their answers were all really interesting, and I’d be happy to share sometime if anyone is interested.

On Saturday, I gave two conference presentations about tangentially related topics. The first was about the status of disability justice in Japan over the last twenty years. Speaking to a crowd of about fifty or so people at the Japan Student Services Organization (JASSO), I explained that Japan’s progress towards becoming a ‘barrier-free’ society has not helped all people equally. As life gets easier for some people, it gets harder for others who face increasing stigma and discrimination due to their inability to use the newly developed measures and assistive technologies. Such stigma, I argued, has resulted in a wave of violence and abuse toward persons with disabilities that has largely gone undocumented by scholars, researchers, and members of the general public. Instead, such actors have taken instances of violence toward persons with disabilities in isolation, developing solutions that treat the symptom but not the cause.

The second presentation I gave on Saturday examined one such incident in detail (the Sagamihara Stabbings of 2016) and explained how the countermeasures developed in its wake promise to do more harm than good for persons with disabilities. Speaking to an audience of ten or so people via Skype at the Mid-Atlantic Region Association for Asian Studies Conference, I argued that this reality has allowed for the (re)formation of disability movements in Japan and the identification of new goals and objectives: namely, the establishment of co-development systems like that briefly described above.

Today, I had the opportunity to meet once again with Alisa Shimizu and discuss her undergraduate thesis project about foreigners with disabilities living in Japan. Through our conversation, we decided that we would collectively try and build a digital community for such individuals, as there’s no formal space for collaboration and sharing information at the moment. I’ve just set up a Facebook page toward that end here, so if you or anyone you know is a foreigner with a disability in Japan or an ally thereof, please feel free to join!

Now, before I close, folks, I wanted to let you all know that the Japan Times article I mentioned a few weeks ago has finally come out. You can view it here!

I look forward to catching up with you all again next week! Until then, stay tuned 🙂

 

Translation, Transcription, and Transformation

Hello everyone!

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!

 

Newspapers and New Connections

Hey all,

This week’s entry will be rather short, as I spent much of my week feeling rather ill. To be honest, I’m still not over whatever I had, so I hope you’ll bear with me!

On Monday, I spent most of my day inside translating a couple of articles about the history of social welfare in postwar Japan. Halfway through the day, I started to feel a bit ill, and I became particularly worried because the back left wheel of my wheelchair had started to  squeak. I called the wheelchair repair company in Morishita, and they told me to come in at around 6PM.  By the time I arrived, I felt as if my back wheel was ready to fall off: it was scary, to say the least! Thankfully, the wheelchair repair company was able to replace my rear tire without much fuss. I was lucky; in the US, that kind of repair could have taken weeks.

On Tuesday, I got up early and headed out to the Asakusa Cultural Information Center. There, I met up with three other wheelchair users: a paralympic powerlifter, the president of Mirairo inc., and my friend Josh Grisdale from Accessible Japan. We waited for a little while for five other people to arrive, including a reporter from the Japan Times. As soon as everyone showed up, the reporter sat down in a manual wheelchair, and the other wheelchair users and I began to give him a guided tour of the area from our perspective. We started with the Asakusa Cultural Information Center itself before moving to Senso-ji temple, Tokyo Sky Tree, Shibuya Station, and Meiji Shrine. Along the way, we stopped for lunch, inspected multiple bathrooms, and explored transportation options like buses and trains. The reporter seemed genuinely shocked about the conditions that wheelchair users face in Japan each day, and proceeded to ask us lots of questions about the buildup for the Paralympic Games in 2020. For those interested, the article is due to come out in early November. I’ll put a link in my blog when it does!

On Wednesday, I travelled to the Inter-University Center for Japanese Studies in Yokohama. There, I met with the president and vice-president of the school to discuss the feasibility of my attending their program next year in the event that my application is successful Thankfully, it seems like the school is mostly accessible and there won’t be too many problems! After finishing my consultation session, I grabbed lunch nearby before rushing off to the University of Tokyo to meet with my advisor, Dr. Satoshi Fukushima. Dr. Fukushima and I spent around thirty minutes or so discussing a couple of clerical matters regarding my position at Todai before heading down to a joint research meeting between his laboratory and that of Dr. Shin’ichiro Kumagaya. At the meeting, I had a chance to meet ten of my colleagues who work on various aspects of disability in Japan. Before long, I found myself having a lively conversation about their projects and interests, and I had an opportunity to share some of my own work about the connection between  religion and disability in Japan. I was told by Dr. Fukushima to save my dissertation for the time being. Apparently, I’ll be afforded a long block of time to share that work with everyone at some point in the near future!

On Thursday, I spend most of my day in bed sick. Never one to waste time, however, I decided to work on an upcoming presentation about disability justice in contemporary Japan that I’m due to deliver at the annual Japanese Student Services Organization Conference. After spending several hours working on that presentation, I found myself too exhausted to continue and quickly passed out for the remainder of the evening.

Friday was similarly uneventful, and I spent much of my day in bed. Having said that, I did receive a new shower chair from a medical supply company in the afternoon that promises to make my life easier in the coming weeks, as I’ll no longer have to rely on the one that I’ve been using (which is built for someone half my size.) I also had a visit from the Ward Office about the possibility of having a nurse come out to check on my health once a week. It seems that they’re worried that the difference in caregiver hours between the US and Japan (22 hours a day in the US vs. 5 in Japan) may have a negative impact on my health. Based on how I’ve been feeling, I can hardly blame them…

Yesterday, I made my way back to the University of Tokyo to meet with Dr. Jun Ishikawa. Among other things, Dr. Ishikawa is a member of the UN Convention on the Rights of Persons with Disabilities (CRPD), Chairperson of the Commission on Disability Policy for the Cabinet Office of Japan, and a Project Professor in my department at the University of Tokyo. We met for around an hour, during which time Dr. Ishikawa and I talked about the current status of Japan’s barrier-free development from the perspective of the UN as well as recommendations for the future. Dr. Ishikawa emphasized the fact that we cannot discount cultural attitudes toward assistive technologies when thinking about Japan’s barrier-free development. More specifically, he argued that principles of self-determination favored by the independent living movement in Europe and the United States (and, yes, in Japan as well to some extent) are not always in line with the will and desire of persons with disabilities in Japan who often want to live in collectives/colonies. Thus, when considering the development of Japan’s barrier-free landscape, we have to try and develop technical systems that accommodate both kinds of usage. Toward that end, there are lots of questions to be asked about how to get interested parties involved in the creation process, and to what extent they ought to be involved. Suffice it to say that I found my conversation with Dr. Ishikawa very stimulating, and I look forward to speaking with him again in the future.

As for today, I’m back in bed, doing a little bit of translating. It really takes a lot out of me to get through even five pages of Japanese to English translation, but I hope that it’ll come easier with time. Otherwise, I intend to sleep and get over this nasty, lingering bug. I better, because the coming week looks to be quite busy! Among other things, I’m due to meet with several leaders of Japan’s Independent Living Movement, participate in a lecture series at the Japanese National Diet Building, and attend an event analyzing the technological impact of the 2020 Paralympic Games. I’ve also discovered several new leads for my dissertation research tied to the Japan Forum on Disability that I intend to explore.

I’ll keep you all posted!

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.

 

 

 

Crossing the Sea

Hey all,

I’ve entered the third week of my research here in Japan. This week was filled with transpacific currents and exciting opportunities that I look forward to sharing with you.

1) On Monday, I attended an American Studies lecture series hosted by a group of  Japanese scholars who recently returned from a summer of research in the United States. The event was hosted at the International House of Japan in Roppongi, where, coincidentally, my high-school Japanese teacher Ms. Sharlie Conroy Ushioda was staying. Thankfully, Sharlie and I had the opportunity to meet and chat about her recent voyage across the pacific by boat. Our meeting was particularly meaningful, as this was our first time seeing each other in Japan since I first stepped foot into her class ten years ago. For those unaware, Sharlie was my first Japanese instructor and one of the primary reasons I decided to go into Japanese Studies in the first place. I owe her a great deal, and I was really happy that we finally had the chance to meet in Tokyo. After concluding my meeting with Sharlie, I returned home to have a goodbye dinner with my (now former) caregiver, Jihad, who returned to the United States yesterday afternoon.

2) On Tuesday, I had a very large meeting in the morning about my caregiving services from here on out. The meeting took place in my home and involved nine people representing three different caregiving companies and the city office. After demonstrating how I transfer to and from my bed, shower chair, toilet, and so forth with the assistance of a caregiver, the city hall official concluded that I’ll be entitled to roughly 5 hours of care a day (as compared to my 22 hours of care in the United States). The cutback in hours will certainly curtail many of my desired activities, but I’ll do what I have to do to get my research done!

After finishing my meeting, I dashed over to the University of Tokyo where I met with one of my academic advisors, Shin’ichiro Kumagaya. Dr. Kumagaya and I spoke about my research and the ways in which it intersected with his own for around twenty minutes before he invited me to sit in on one of his classes. The class emphasized the psychology and affect of “Interested Parties” 当事者. After introducing “Interested Person Studies,” a field which grew out of the intersections between “Independent Living” 自立生活 and “Self Help Groups” 依存病自助グループ in Japan, Dr. Kumagaya asked me to think about a problem in my life and take it as a research theme. He told me to write in detail about my first, last, and most vivd memory of the problem in as much detail as possible as well as my attempts to resolve it. By mapping out my successes and failures and identifying patterns in my approach, he said, I could develop a narrative that could be placed in conversation with others around me. Together, we could try and find a way forward.

While I found the idea of personal empowerment through group discovery fascinating, I was personally less interested in the content of Dr. Kumagaya’s lecture than its historical situatedness. I was inclined to ask why he was teaching about the psychology of disability at one of Japan’s most elite institutions. Especially now, at this current moment, when Japan is undergoing a rapid series of changes with respect to its landscape of accessibility. The best answer that I can come up with is that psychology and personal narratives are a gateway to identifying other kinds of barriers facing the nation today – physical, cultural, legal, educational, and otherwise.

3) On Wednesday, I took to working on my article on medieval Japanese Buddhism and disability for a little while before cracking into several new books on disability in Japan that arrived in my mailbox. As I’m due to interview Koji Onoue, the vice-chairman of DPI Japan (who also services as an advisor to the Japanese Cabinet on Disability Rights) next week, I decided to start with his work. First, I read a transcribed dialogue in which Onoue recounts his experiences growing up with cerebral palsy in Japan during the 1960s and 1970s that was published in a special issue of the Japanese Journal of Clinical Psychology 臨床心理学 called “Interested Parties and Expert Wisdom” 当事者研究と専門知. The dialogue was so interesting that I decided to summarize and translate it into English for future use.

4) On Thursday, I had an interview with Reo Kobayashi, a reporter from USC who was curious about the state of education for persons with disabilities in Japan. Reo himself has cerebral palsy and he was very interested in my experiences in the Japanese education system. We spoke at length about my time at Waseda University, Sophia University, Toyo University, and the University of Tokyo, focusing on the barriers I encountered both within and outside of the classroom as well as the ways that I was able to overcome them. Following my interview, I took some time off to grab a bite to eat and do a bit of reading. Sometimes, rest is important, too.

5) On Friday, I traveled to my local ward office to pick up my physical disability pass, which after a month of processing was finally ready. I learned that I am a “level one” 1級 person with a disability, which is the most severe on a scale from 1-6. My designation of level one entitles me to a host of services including a monthly stipend, caregiver support, medical equipment, lower insurance premiums, discounted transportation, and so forth. While I’m glad that I now have my disability pass in hand, I can’t help but wonder how other persons with disabilities manage to navigate the arduous application process – especially if they lack the resources and privileges that I have. Not only did I have to speak Japanese, but I also had to pay out of pocket for all services that I received during my first month. When you factor in all the system barriers that I encountered – physical, legal, cultural, educational, employment, etc. – it’s truly a lot to handle. No wonder there are so few of us foreigners with disabilities jumping around Japan!

6) On Saturday, I said goodbye to my caregiver for the last month before heading over to a couple of local events. First, I attended a car show, “Tokyo Motor Fest 2018.” Then, I went to a nearby Octoberfest for some beer and sausage. By the time mid-afternoon rolled around, I was ready to meet with Alisa Shimizu, a student from the Tokyo University of Foreign Studies, who’s writing her undergraduate thesis about foreigners with disabilities in Japan. After a four hour interview, in which we discussed everything from my training in Buddhism to my experiences at the convenience store, Alisa and I went to grab a bite to eat. By the time I got home I was ready to pass out (and proceeded to do so immediately upon getting into bed). What an exhausting but rewarding day!

7) And now, today, I’m preparing for an afternoon of reading and relaxation at home.

As always, the coming week promises new and exciting adventures. I’m giving a lecture tomorrow afternoon about my Accessibility Mapping Project to a few universities back home via Skype, and I’m due to meet face-to-face with my primary academic advisor, Dr. Satoshi Fukushima, for the first time on Tuesday.

As always, thanks for reading and stay tuned!

New Arenas and New Friends

Dear all,

I hope you’re doing well!

I’ve now entered the second week of my research here in Japan, and what a busy week it’s been!

On Monday, I spent some time working on a forthcoming article about disability and religion in medieval Japan before heading over to the Nippon Foundation’s newly constructed training facility for the Paralympic Games. Upon my arrival, I received a guided tour of the facility from a foundation employee and learned about its history. Apparently, the facility was built because there was no training space available in center Tokyo for disabled athletes who required significant accommodations. As I toured the facility, I conducted an access audit and I must say that I was pleasantly surprised. Although built on a budget, the facility managed to accommodate disabled athletes with a wide range of impairments. While it lacked automatic doors and tactile pavement, it boasted high contrast surfaces, industrial strength fans, wheelchair-accessible parking, and accessible toilets of various configurations. The shower rooms also had nozzles on different sides and the lockers were kept at different heights to maximize accessibility. All in all, I was very impressed, but I wondered how the engineers and architects behind the facility’s construction determined which accommodations were necessary. When I asked my tour guide, he let me know that the Nippon Foundation headquarters was located near several major para-sports organizations and that they coordinated their efforts to ensure that as many users as possible could be accommodated. I certainly applaud their effort, but I wonder if a public facing dialogue might be in order as the space is open to anyone (with a reservation) and will surely continue to be used after the games conclude.

On Tuesday, I had a conference call with some of my partners on the Accessibility Mapping Project (AMP). For those unaware, I have built a mobile app that allows users to report and visualize barriers to access on college and university campuses across the globe. My meeting was primarily concerned with the continued development of the AMP as well as its practical implementation back home at the University of Pennsylvania. After concluding my meeting, I then traveled to STEP EDOGAWA, an independent living center around an hour away from my current residence. While I went to inquire about my continuing troubles finding caregivers, I left with a bunch of new friends and people to interview about the development of disability rights in Japan. After returning home, I spent a few minutes relaxing before catching up with Patrick Galbraith, an old friend/former professor with whom I chatted about everything from research to our favorite anime songs.

On Wednesday, I visited the University of Tokyo’s hospital for a cardiology appointment. As it turns out, heart transplants are still a relatively new and rare procedure in Japan, and the number of specialists able to treat patients are few in number. As I had a transplant seventeen years ago, I had little choice but to seek out one of those specialists for an introduction and routine checkup. During my consultation session, I learned that cardiac biopsies, surgical procedures rarely performed in the US at my stage post-op, are routine in Japan and that I would need to undergo two per year. Also, I would have to submit to routine cancer screenings, which are not carried out in the United States. Both procedures involve a heavy investment of time and money, which someone less privileged than I might not be able to afford. Again, just another example of how measures to make Japan a more accessible place for some persons with disabilities may exclude others.

On Thursday, I spent the morning writing and scouring local newspapers for recent articles about disability in Japan. I continued to develop the fifth chapter of my dissertation, which focuses on the connection between increased accessibility/visibility of persons with disabilities and increased violence before taking a lunch break. I was fortunate enough to meet up with a former employee of the study abroad program that sent me to Sophia University in 2013. We had a great time catching up and talking about my progression, as a scholar and an individual, as well as the way that the program had come to take in many students with disabilities since my departure. As an FYI for those unfamiliar with me, I’ve been many ‘firsts’ when it comes to Japan and accessibility. I was the first exchange student to use a wheelchair at Sophia University and the first Fulbright scholar to use a wheelchair in Japan. As far as I am aware, I am also the first Japan Foundation Fellow to use a wheelchair as my primary mode of transportation, but I’d have to check to be sure. Trailblazing is great, but often challenging work. It’s always fantastic to hear that it pays off, and that others are benefitting from my struggles.

On Friday, I spent most of my morning focusing on my ongoing caregiver conundrum. I called over thirty caregiving companies in nearby wards to see if they would be able to assist me and received nothing but apologies in return. It was only when I decided to reach out to companies within my ward, where I was told it would be a waste of time to look, that I found a glimmer of hope. As it turns out, the city hall had been making calls on my behalf and found four companies that collectively may be able to cover my needs. I’m due to meet with those companies on Tuesday, so keep your fingers crossed!

On Saturday, I began to buckle down for the upcoming typhoon and spend some time researching disability online on the National Diet Library’s digital collections archive. I also walked around Odaiba and got some fresh air before accidentally stumbling into an international development festival. Among the various kebab stands and donation stations was a booth run by the Japan NGO Network on Disabilities (JANNET). I spoke with some of the representatives at the booth, discovering that they knew about my advisors work and that we had many contacts in common. After watching a Japanese Sign Language and Braille Reading demonstration, I snagged a flyer for an event called, “What is an accessible meeting, anyway?” that is due to take place in mid-December before heading home.

And today, I’ve spent some time catching up with many of my friends from the United States while I wait for the typhoon to pass. There’s also an information session for the upcoming TedXFulbright Tokyo conference this evening that I hope to Skype into.

Looking forward to next week, I have some fun things lined up. In addition to the aforementioned meeting about caregivers, I’m due to meet with my high school Japanese teacher for the first time in Japan. I’m also due to give an interview to a USC reporter about the state of education for persons with disabilities in Japan and have my first formal meeting with my academic advisor, Dr. Satoshi Fukushima. I’ll be sure to let you know how everything goes!

As always, thanks so much for reading, and stay tuned!