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!

Disability Books

Disability Pass

Alisa and I

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!

Para-Arena

Research and Beer

Braille and JSL Demonstration

STEP EDOGAWA Friends

Hey everyone!

It’s been one month since I left for Japan.  So far, my time has been devoted to settling in, getting my medical situation squared away, and arranging a series of interviews and opportunities for expanding my research. I’m pleased to say that, as of this week, I’ve exited the “settling in” phase and begun the “research phase” of my stay.

1) On Monday, I took a boat out to Asakusa and spent some time at Senso-ji and Tokyo Sky Tree to mark the transition between the ‘old’ and ‘new’ aspects of my life. For those unaware, Senso-ji is an old, massive temple located not too far from the brand-new skyscraper/tourism center known as Tokyo Sky Tree. Walking between the two has become something of a tradition for me to mark major periods of transition in my life.

2) On Tuesday, I traveled to Ebisu to visit an accessibility consulting company called Mirairo Inc.. Mirairo provides a number of for-profit services that aim to assist companies in creating accommodating work environments including but not limited to architectural and product consulting, ‘universal manners’ training and certification, and market research. Their market research division is particularly interesting, as it maintains a pool of 2,000+ persons with disabilities from various backgrounds who provide simultaneous consulting services based on the intended audience of a product. In fact, I accepted an invitation to join the market research division as a volunteer to see what the process looks like. It’s been very fascinating so far!

3) On Wednesday, I spent some time at home researching articles about disability and violence on the National Diet Library’s website. I also took some time to start writing an article about disability and defilement in medieval Japan that was solicited for publication a while back. This became my “processing day,” where I began to think about the language I would use for my project and came up with a few key terms: ‘accessibility,’ ‘violence,’ ‘movements,’ and ‘media.’

4) On Thursday, I had a caregiving company come out in the morning to evaluate my physical condition and discuss the possibility of making a contract. In Japan, all caregiving contracts (regardless as to whether one possesses/does not possess a disability passbook) are made between the client and the caregiving company, so this evaluation was necessary. As it turns out, the company representative said that they may be able to help me, but only for around half of the time I need. I’m expecting a call back sometime next week with additional details.

More interesting than my in-home evaluation was a meeting I had with Professor Osamu Nagase of Ritsumeikan University later in the afternoon. A longtime friend, Professor Nagase wrote one of the first books on disability in Japan alongside Professor Jun Ishikawa. Professor Nagase and I had a lot to talk about, as this was the first opportunity we’ve had to discuss my research in some time. I was somewhat surprised to learn that Professor Nagase and many of his peers in Japanese Disabilities Studies do not often read the works of their Western counterparts, creating a gap that my work may be able to bridge.

5) On Friday, I met with Ms. Masako Okuhira, one of the prominent players in Japan’s independent living movement since the early 1980s. Ms. Okuhira and I had met previously on one occasion, but that was several years ago and much had changed since we’d last spoken. Thus, as was the case with Professor Nagase, Ms. Okuhira and I had much to discuss. We spoke about my current research and her experiences working with the ILC movement in Japan and abroad before grabbing some lunch together. As we chatted, Ms. Okuhira was gracious enough to offer to introduce me to several figures relevant to my project including but not limited to the accessibility advisors to the Olympic/Paralympic Committee, producers involved in NHK’s coverage of disability-focused issues, and the leaders of various disability organizations like the “Federation of Disabled Persons.” She also offered to put me in touch with the archivist for the Japan Society for the Rehabilitation of Persons with Disabilities (JSRPD), which has several decades worth of diaries and journals tied to its founder and members that have yet to be analyzed. As a final treat, I received an e-mail from Ms. Okuhira after our parting letting me know that she spoke with a representative from the Ministry of Land, Infrastructure, Transportation, and Tourism about my research and he told her that it was directly in line with the work currently being conducted by the ministry’s director of accessible law and policy!

Also on Friday, I met with a representative from my local ward office to discuss my physical condition and negotiate the hours of care that I’m entitled to each week. The results of that conversation are pending, but I should hear back next week.

6) On Saturday, I spent some time cleaning up around the house before heading outside to discover a Mexican festival on the promenade. I spent the day eating, drinking, relaxing, and processing the events of the week, with the highlight being a mariachi cover of ‘Despacito’ by an all-Japanese band in front a replica Statue of Liberty and a seven-story high robot statue. Only in Japan.

7) Today, I have two things on my agenda. First, I’m due to Skype with a friend who I attended the AAS Dissertation Workshop with this past spring. Hopefully our conversation will help me sort out some of my thoughts about the materials that I’ve discovered/read for my project so far. I’m also meeting with one of the chief organizers of the TedXFulbright Japan Conference to discuss how I might assist them this year and perhaps present some of my work.

Looking forward to next week, I have a lot lined up already: a tour of the Nippon Foundation’s newly-constructed ‘Para-Arena,’ meetings with multiple academic advisors (past and present), hospital/caregiving appointments, and more! As always, thank you for reading and stay tuned!

Boat to Asakusa

Mirairo’s Services

Masako Okuhira and Me

Hey all,

For those counting, this is the fourth week of my journey. I’m going to go ahead and label this week “caregiving challenges,” but it might as well be called the “final week of my settling-in period.” Starting next week, I’ll begin meeting with experts on accessibility in Japan and leaders of the nation’s disability rights movements.

My activities for this week were as follows:

1) On Monday, I visited my hospital and consulted with an orthopedic specialist and cardiologist.  The two insisted that I undergo a battery of tests, after which I received two certificates of health (one for my physical mobility, and one for my heart). The process took nine hours and cost around $300.

2) I also visited the City Hall for my ward in Tokyo on Monday to submit the certificates of health I received in exchange for my disability pass. Unfortunately, I was told that my documentation was insufficient for processing my request upon my arrival. Not only did the Japanese government require my passport, personal seal, proof of insurance, and completed application paperwork, they also needed my old passport (which expired this past May) to prove that I did not receive any income in Japan last year. Mailing that passport to Japan meant that I had to bother my dad in the United States to go find it. It also took three nights and cost another $100, creating quite a scare along the way due to some difficulties with customs.

3) On Tuesday, I purchased an audio recorder and began organizing my notes for next week’s interview sessions. I will not include the names of any individuals whom I intend to interview out of concern for their privacy. Suffice it to say that I will be speaking with access consultants, disability rights activists, and social welfare lawyers.

4) Also on Tuesday, I had dinner with a prospective Ph.D. student at my home university. The experience was really great, and I had a fantastic time chatting with that student about the pros and cons of academic life.  As always, I appreciated the opportunity to reflect on  the reasons why I love teaching and following the path that I do.

5) On Wednesday, I visited the National Diet Library and registered a library card. I also scouted out the stacks and learned the acquisition process that I’ll follow to get my hands on disability periodicals and historical records that are critical components of my research.

6) On Thursday, I began sowing the seeds for next months’ interviews, which include a reporter from the Japan Times and multiple scholars of disability rights and activism at the University of Tokyo. I also set up a guided tour of the Nippon Foundation’s newly constructed Paralympic Training Center in Odaiba.

7) Having acquired my expired passport on Thursday afternoon, I returned to the City Hall of my ward in Tokyo on Friday. Although I presented the government office with all necessary materials to acquire my disability passbook, I was told that I may not be able to receive caregiving services from my ward due to my remote location. For those unaware, I live in a facility for international researchers established by the Japanese government in a non-residential area. Any caregiver who would come to assist me would have to spend a great deal of time and money to do so, and they would not receive any compensation from the government.

This situation has yet to be resolved, although I’m currently working on a solution. So far, I’ve reached out to my sponsoring organization and begun to search nearby wards for caregiving services. If anyone has any other ideas, I’d welcome any/all advice!

8) Friday evening I got together with some of my friends from Sophia University, where I studied abroad as an undergraduate student in 2013. We went out for dinner and enjoyed a couple hours of Korean BBQ, beer, and merriment. All in all, a great way to deal with the stress of settling in to a new place!

Next week promises to be eventful as I’ve several interviews and tours lined up back-to-back. Thanks for reading, and stay tuned!

Hey all,

If my first week in Japan was “arrival” and my second week was “settling in,” my third week was “advanced preparations” and “preliminary networking” for my research.

1) My father left Japan this past Tuesday, shortly after my interim caregiver arrived from the United States. That caregiver will stay with me until the end of the month, at which point he’ll return to the U.S. and I’ll have to hire someone in Japan to take over. Unfortunately, the process of acquiring disability insurance and caregiving services in Japan is long, complicated, and expensive (at least three months, lots of paperwork, and hundreds of dollars) so I’ll just have to grin and bear it until everything pans out.

2) Speaking of the long (and irritating) process of acquiring disability insurance, I’ve scheduled a physical at my local hospital that will serve as the basis for my application. That appointment will take place early tomorrow morning. Wish me luck!

3) Despite a major typhoon on Tuesday, I managed to have lunch with several friends and colleagues this week. While I enjoyed catching up with a senior graduate student from Penn and a doctor who treated me for lung disease some time ago,  I was particularly appreciative of my time with Josh Grisdale, the founder of “Accessible-Japan.com.” Josh and I rolled around Tsukiji in our wheelchairs, visiting a few temples and shrines before grabbing some sushi and chatting about all things (dis)ability. Josh is extremely knowledgeable about Japan’s current landscape of accessibility, and has agreed to put me in touch with some contacts who might assist me with my research!

4) Besides my interaction with Josh, I also reached out to a number of movers and shakers in Japan’s disability activism scene – past and present. I’ve set up appointments with some of the founders of Japan’s Independent Living Movement as well as representatives from key organizations like the Sasakawa Peace Foundation and DPI Japan. I’ll use those appointments to collect testimonies about Japan’s shifting standards of accessibility and the rise and fall of disability rights movements over the last one-hundred years.

5) Perhaps the most consequential development of this week occurred when I visited my host institution: the University of Tokyo. There, I attended a conference on stuttering hosted by disability studies scholars Satoshi Fukushima (my academic advisor) and Shin’ichiro Kumagaya. The conference featured Shinji Ito, a disability rights activist who shared his life story about coming to terms with his stutter. Mr. Ito divided his life into three phrases: 1) From birth until elementary school, when his stutter did not pose a problem due to a lack of social expectation, 2) From elementary school until college, when his stutter interfered with his interactions with his peers and created a problem, and 3) from college onward, when he reconsidered the nature of his stutter and saw the problem to lie both internal to himself (medical) and external in society. Importantly, Mr. Ito explained that he often refused to speak during the second phase of his life because he believed that a lack of speech was preferable to ‘abnormal’ or ‘problematic’ speech. Mr. Ito hated his disability and blamed it for many of his problems. It was only after attending a thirty day retreat in which he was encouraged to speak alongside other stuttering individuals that he reevaluated the cost of not speaking and embraced his stutter. That profound experience led him to form a self-help group for stuttering individuals, which  has helped upwards of 7,000 people since its foundation in the 1960s. The trajectory of that group – the kinds of events it held, the way it recruited new members, etc. – is extremely fascinating and will surely inform my dissertation research.

Looking forward to this week, I have a number of events lined up: hospital appointments, meetings with potential PhD students, a reception for Fulbright, and many more! I can’t wait to see where things go from here…

Outside My Apartment

Audio Signal for Crosswalk

Accessible Vending Machine

Universal Toilet