Existence, Experience, and Employment

Hey all!

This past week was quite busy, and something of an emotional rollercoaster for me. I’ve been helping my fiance with her graduate school applications…it’s like I get to apply for a third time! Still, I managed to accomplish a lot this week and I feel proud, so I suppose that’s something. On to the recap!

As I wrote a blog entry last Monday, I won’t bother recapping that day. Suffice it to say that I needed lots of rest as I was still getting over a fairly nasty bug (I’m fine now, by the way!)

On Tuesday, I spent most of my day inside scouring the National Diet Library’s database for resources about the five main sections of the first chapter of my dissertation, which are dedicated to 1) visual/hearing impairments, 2) infectious diseases, 3) intellectual impairments and psychiatric disorders, 4) physical impairments, and 5) military welfare in Japan between 1920-1945. Although I’ve written most of my first chapter already, I’ve done so on the basis of a broad collection of secondary scholarship without citing as many primary sources as I’d like (maybe 40%?) Still, it’s a start, and a fairly important contribution to the field in my opinion, as very few people (if any) have bothered to look at the development of accommodations for these populations alongside one another. When we do, we find some really interesting results: policymakers and public intellectuals deployed a wide range of strategies for dealing with so-called ‘disabled’ individuals in (inter)war Japan, including but not limited to special education, sequestration, community participation, selective integration, and social welfare initiatives. Responding to processes of industrialization, urbanization, militarization, and the rise of eugenic thought, they tried their best to deal with the ‘problem’ of disability, by reinforcing hierarchies of accessibility based on race, class, gender, and capacity.

Stepping away from my historical inquiry, I jumped into the present with some ethnographic fieldwork on Wednesday at a public lecture hosted by DPI Japan. The lecture was dedicated to the formation of new policies related to dying with dignity and euthanasia. Many famous faces were in attendance, including Shoji Nakanishi, one of the primary players in Japan’s independent living movement. I had the chance to speak with many of the people there (including Nakanishi-san), although there were more than one-hundred interested parties in attendance so I couldn’t get to everyone. Still, I found the debate very interesting: how does one develop an effective strategy for end of life care? Should we develop policies that allow for dying with dignity? If so, who are the players involved in making decisions about such matters? How can we determine free will at any point in time, let alone make such heavy decisions based on prior consent? What factors (technologies, caregivers, etc.) do we need to create an environment where individuals can make ‘free’ and ‘informed’ decisions about the ways in which they would like to die? What about the role of families in making decisions? These are just some of the questions that were explored on Wednesday.

On Thursday, I took the day off to recuperate from the emotional charge of Wednesday’s event. I needed time to process the discussion of dying with dignity, as it hit home in more ways that one. As a person with a progressive muscle condition, I’ve been forced to think through my own future on multiple occasions.  But I’ve rarely been afforded the opportunity to reflect so viscerally on my own fate. What decisions would I make if I were in a position where dying with dignity became an option? Would I want to live in chronic pain with severely limited communication? I’m inclined to say yes, provided I have a supportive environment. There’s still so much I can contribute – and that I want to contribute. That’s how I feel now, anyway, we’ll see where things rest in a couple of years.

On Friday, I woke up early and headed to the University of Tokyo to meet with my advisor, Prof. Satoshi Fukushima. We spent a great deal of time talking about the “existential model of disability” he’s been developing on the basis of face-to-face conversations with many disabled individuals. Dr. Fukushima’s model follows the way that experiences of disability shape our decisions about friends, family, health, wealth, and other aspects of daily living. It resembles some of the scholarship I’ve seen on cripistemologies in the West, especially that introduced by Robert McCruer. During the course of our conversation, Dr. Fukushima and I talked about the relationship between disability and religious intimacy as well as love, self-understanding, self-respect, and self-determination. Perhaps the most exciting part of our conversation was the fact that it was filmed by a crew from NHK, who intend to air it on a TV show called “Direct Talk.” As it turns out, Dr. Fukushima and I will be filmed again this coming Thursday for another TV show on the recent government employment scandal. For those unaware, it recently came out that the Japanese government has been inflating employment statistics for persons with disabilities for the last forty years by including individuals with glasses (as well as other minor impairments) and even the dead as ‘disabled.’

After finishing up my meeting/film session with Dr. Fukushima, I traveled across town to attend an emergency meeting about the reconstruction of Nagoya Castle led by Dr. Gihei Takahashi of Toyo University. The meeting explained in detail the issues that persons with disabilities have with the reconstruction: namely, that the castle is being built such that it includes narrow rooms, many stairs, and no elevators. Officials have argued that the inclusion of elevators goes against historical (cultural) precedent and risks disturbing the stone foundation that remains from the Edo period. However, as many disability activists have pointed out, the castle was rebuilt once before during the 1960s such that it included two large freight elevators. Officials have fought back, arguing that the last time the castle was rebuilt there was less awareness/concern about environmental issues and sustainability, but one has to wonder about the legacy of the castle they intend to create. Who will be unable to tour it? What will their experiences of inaccessibility bring? What precedent are we setting for construction projects in other times and places?

As if to answer these questions, I rushed over to the seventh annual meeting on disability policy hosted by DPI Japan on Saturday. The meeting, officially titled “Toward the Comprehensive Implementation of the UN Convention on the Rights of Persons with Disabilities (CRPD)  – Rushing Toward the UN’s 2020 Review,” was attended by more than 200 persons with disabilities and allies from across Japan. After arriving, I had the opportunity to meet with many old friends and former interviewees including but not limited to Jun Ishikawa, Koji Onoue, and Noboru Imamura. We all gathered in a room and talked about many of the issues facing persons with disabilities today, ranging from physical access to reproductive rights. Then, we discussed how the CRPD might be mobilized to address these issues, and where we need further clarification. It was really interesting to observe the whole process and review the materials compiled by the organizing committee, which spelled out the Japanese government’s official attitudes toward the raised issues and put them side-by-side with DPI Japan’s collected data. As much as I enjoyed the actual meeting, I had an ever greater time at the after party, in which I was treated as a guest of honor and obliged to drink until I got drunk. For those unaware, the National Police Agency of Japan recently released a manual saying that electric wheelchair users should not drink as they risk hurting other people. To challenge the blatant discrimination of their ruling, my friends and I drank to our heart’s content.

On Sunday, I took the day off to help my fiance finalize her graduate school applications. The day also afforded me an opportunity to rest and reflect on my own work, as well as to go out and enjoy myself. Nothing says relaxation like a gluttonous buffet dinner and a movie!

On Monday, I headed over to the Nippon Foundation Headquarters to attend the ASEAN Japan Summit for University Students with Disabilities. The conference was attended by around 85 persons with disabilities and allies from across South Asia, who were divided into four groups and tasked with developing a new kind of technology to support persons with disabilities in their respective communities. Some advocated for accessible social media campaigns aimed at improving awareness, while others sought to address issues related to employment by developing and promoting mobile apps. It was really exciting to hover between the groups (occasionally offering my opinion) and see what everyone was up to! In the afternoon, the four groups presented their ideas before representatives from Microsoft, the University of Tokyo, and Yohei Sasakawa, the chairmen of the Nippon Foundation. Later today, they’ll receive a decision about which project(s) will receive grant support to become a reality! I wish everyone the best.

Before leaving the Nippon Foundation building, I stopped by a pop-up cafe on the first floor that was designed to showcase new employment possibilities for persons with disabilities. The cafe featured various avatar robots that could be controlled remotely by persons with severe disabilities including but not limited to Muscular Dystrophy and ALS. The robots busily milled about, performing tasks traditionally assigned to waiters and staff. Honestly, it was really cool to see. I was even given the chance to pilot one of the avatar robots myself! As I’ve written about elsewhere, micro-tasking and tele-commuting present two fantastic avenues for the development of disability employment in Japan’s future, and if the expressions of the patrons of the robot cafe are anything to go by, I’m not alone in thinking that way.

Today, I’m off to Asaka to map the accessibility of the olympic village they’re setting up out there. I’ll also be delivering a lecture about inclusive design and my experiences as a foreigner with a disability in Japan at Toyo University.

The rest of this week promises to be action packed, with interviews, fieldwork, and writing in the future! Stay tuned, and as always, thanks for reading!

 

 

 

Writing and Writhing

Hey all,

Apologies that this entry is coming a day late. I’ve been sick the last couple of days, and I’m really not feeling up to writing right now. Having said that, I want to get the word out, so I’ll offer a brief recap on this past week’s activities:

On Monday, I started to write the fifth chapter of my dissertation. I’m due to present on that material at a conference at Nanzan University in two weeks, so I wanted to make sure that I had a solid draft to go off of. As this is not an ‘academic’ blog, I’ll keep my summary short. Basically, I explore how the installation of elements of barrier-free architecture and promotion of principles of ‘Universal Design’ has manufactured possibilities of prejudice, violence, and abuse toward persons with disabilities in Japan over the last twenty years. Incomplete or inadequate understanding of accessibility tied to an inability to engage all potential users of given spaces has created social, political, and economic tensions between persons with disabilities and their communities, resulting in conflict and calls for reformation. Trust me when I say the idea makes more sense when fully fleshed out with the 120+ articles I’ve collected for it from various newspapers, interviews, and field-sites.

On Tuesday, I got together with a longtime family friend, David Freedman. David grew up with my dad, and although they are not related by blood they share the same humor and mannerisms. David currently works as the English-language producer for a wide array of Japanese animation. He’s worked on projects for Studio Ghibli and other major entities. It was really cool chatting with him about his experiences while we grabbed some sushi from a nearby bar!

After meeting with David, I ran over to Asaka to conduct an access audit for the Olympic shooting range that will be used during the 2020 games. While the range itself was fairly accessible, the walk to it was very dimly lit, had multiple physical hazards (inclined paths with gutters and no rail, metal bars blocking toilets, nowhere to sit and rest, etc.) I hope the information that I gave them will be of use as they continue to prepare for the games!

On Wednesday, I spent most of my day working on the fifth chapter of my dissertation before heading outside to meet with a dear friend from Penn, Kristina Horn. Kristina was in Japan visiting her sister, who is currently studying abroad at TUJ. We had lots to talk about and had a great time catching up over soba. It seems like she’s really enjoying her time at Penn and is currently preparing for her Ph.D. applications. You’ve got this!

On Thursday, I took a few hours out of my morning to Skype with a former student who took my Intro to Buddhism class this past spring. That student and I spent a lot of time talking about her career path and experiences as an undergraduate student, as well as our respective philosophies of life and attitudes toward labor. It was great to have a conversation where I could freely express why I’m so happy to be doing what I’m doing and hear about another person’s way of living. Those conversations are really what being a teacher is all about in my book.

After finishing my conversation with my former student and working on my writing for a bit, I went out to meet a fellow Fulbright alumnus, Jasmine Shiokawa, and a lawyer/disability rights activist who specializes in psychosocial disabilities: Nobuo Sasaki. Sasaki-san and I spent a great deal of time talking about the state of accessibility in Japan, but as has become custom, as soon as I mentioned that I’ve also studied Buddhism, the conversation took a sharp turn. We spent a lot of time talking about Buddhist philosophy and ethics, including how they relate to disability. I suppose that I need to get used to the fact that most people I encounter in Japan will latch on to that part of my study as a topic of interest. Ah well, I suppose I’ll just have to bring it back into focus!

On Friday and Saturday, I spent most of my days in bed with an infection. I’ve been taking antibiotics and trying to keep myself conscious, but if my writing here is indication they’re not doing the trick 100%. Hopefully things will look up as time marches on!

Apologies all if today’s entry has appeared disjointed, stream of consciousness, or simply illegible (grammatically or otherwise). This is a writing of pain, an experiment in  cripistemology so that you can all get a feel for my tired condition.

I look forward to sharing more next week!

Cheers.

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Commemorative Photo After Mapping the Shooting Range

Universities and Universal Design

Hello everyone!

It’s Sunday, so that means it’s time for a new blog post.

This past week was fairly eventful – and often in ways that I wasn’t anticipating! Each morning, I wrote a couple of pages of my dissertation, and while I won’t belabor the point I’ll say that I made a lot of progress.

Now, on to the fun stuff!

On Monday, I traveled back to Toranomon where I met with Ms. Masako Okuhira of the Sasakawa Peace Foundation and Dr. Emiko Tanaka of Tokyo Kasei University. We spoke about my research into the history of disability movements in Japan as a group before making a list of contacts who might help me and archives I might be able to use. I won’t spoil too much for now, but I will say that the Nippon Foundation has some excellent resources on the social history of Hansen’s Disease and the Japan Disability Forum has some additional materials worth exploring. I can’t wait to dig in!

On Tuesday, I took the train out to Kanda to attend a meeting of DPI Japan’s Barrier-Free Working Group. The meeting focused primarily on Japan’s infrastructural development prior to the Olympic and Paralympic games, emphasizing recent developments in UD (Universal Design) taxis, airport construction,  hotel room accessibility, and route mapping. Perhaps the most important development to come out of the meeting was a discussion about upcoming revisions to the Barrier-Free Law. One recommendation, which I hope makes it into the law, calls for the establishment of a national council on barrier-free development. That council would be comprised of members from several local committees including persons with disabilities, engineers, and other relevant parties who could collectively determine the needs of individuals in various parts of the country and ways of addressing those needs. While it isn’t a foolproof system, it promises better modes of representation that those that currently exist. I’m optimistic and excited!

On Wednesday, I was supposed to travel to Tokyo Metropolitan University to sit in on a class by Dr. Akihiro Sugino, one of the nation’s leading experts on disability theory. Unfortunately, my caregivers did not arrive on time and I was unable to make it out of the house. While missing Dr. Sugino’s class was unfortunate enough, I had to spend an hour-and-a-half waiting in bed for my caregivers to arrive. During that time, I coughed uncontrollably as I was unable to fully sit up and clear my throat. At times, I felt as if I might drown. Truly, it was a dangerous experience that made me realize I need to (re)solve my ongoing caregiver problem as soon as possible.

On Thursday, I decided to stay in and work as I was still exhausted from Wednesday’s ordeal. A bit of writing, tea, and relaxation put me right as rain, and I managed to make it out again on Friday.

On Friday, I took two Skype calls in the morning from colleagues in the United States before rushing over to the University of Tokyo to meet with my advisor, Dr. Satoshi Fukushima. Dr. Fukushima and I spent the better part of an hour talking about the latter chapters of my dissertation and the overall objective of my research before heading over to a conference of 24-hour caregiver support for students in Japanese universities. The conference provided an appropriate venue for me to express my concerns about my ongoing caregiving situation in front of a room full of experts. Most seemed shocked to hear about what was happening and offered to help me formulate a plan. I hope to enact that plan starting on Monday.

On Saturday, I traveled back to the University of Tokyo to attend a conference on the history of academic accommodation in Japan.  The conference was really interesting, covering the fifteen year history of the Office of Student Disability Services at the University of Tokyo and the challenges faced by that office. It also explored potential solutions to those challenges based on American and Korean precedent and sought to address questions like “what is an accessible university?” and “how can universities contribute to the creation of an accessible society?” I really enjoyed taking part in the conference, and I think that my notes will help me in the future.

Today, I’ve spent most of my morning in bed doing a bit of writing. I think I’m going to relax for the rest of the day and take it easy as this coming week promises to be as busy as the last!

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

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!