Postwar Policy and Consulting Work

Hey all!

I’m pleased to report that I was [at least metaphorically] back on my feet this week and got a lot done. Having said that, I’d like to dive right in to the daily descriptions!

On Monday, I woke up early and made some edits to the first chapter of my dissertation. I received some great feedback from my advisors a few weeks ago, and I felt the need to go back and change a few things. I didn’t spend too much time working on my writing, however, as I had plans to go out and meet with Hiroshi Orito, the director of the Eiyusha Language School. Mr. Hiroshi is an 84-year old Japanese man who has lived and worked in many places throughout his life: New York, England, Milan, and so on. He approached me online last week to discuss his next business venture: a multi-lingual cafe designed to encourage communication between Japanese citizens and foreigners. The cafe, according to Mr. Orito’s description, will provide an informal space for cultural exchange (and more specifically English conversation) to occur. It will exist in stark contrast to more formalized learning spaces such as university classrooms and cram schools, and be open to anyone who would like to visit. I was transfixed by Mr. Orito’s business plan, which he assured me would be made to accommodate persons with disabilities. Indeed, Mr. Orito had requested a meeting with me so that I could advise him regarding how to make the cafe more accessible to persons with disabilities from differing cultural backgrounds: or, at least, that was why I thought we were meeting. In fact, our conversation quickly veered away from accessibility and toward financing the construction of the cafe. Here was an interesting experience for me: I had been called to the meeting via a rhetoric of accessibility, but quickly made to think about other things. How often is the ideal of accessibility used to mask ulterior motives (however noble they might be)? This is the question I found myself asking as I left Mr. Orito at the train station.

On Tuesday, I had a home nurse come out and visit me in the morning before doing a bit more research on apartments. In the end, I decided that I would not move from my current residence in Odaiba. It’s simply too hard (and time-consuming) to find an apartment that can accommodate all of my needs and equipment, and my present arrangement is sufficient for the time being. After making my decision about moving, I filled out some paperwork for the University of Tokyo that will formally extend my affiliation for another year. I’m still waiting to hear back about the status of my visa extension, but I suspect that I should be able to stay through the fall of 2020. Feeling like I had to get something else done besides bureaucratic paperwork on Tuesday, I also made some tweaks to my TED talk script during afternoon. Finally, I grabbed a bite and went to bed.

On Wednesday morning, I woke up and headed to the National Graduate Research Institute on Policy Studies (GRIPS) in Roppongi, where my TED talk will be held next month. Shortly after arriving, I met with ten conference organizers and another presenter to tour the stage/venue. For me, it was incredibly important to visit the venue ahead of time to determine if my wheelchair would be able to successfully navigate the area. I’m pleased to report that there was no issue, and I even had a chance to practice my talk on stage for a bit! I wrapped up before 2PM and grabbed a bite to eat before heading back to my apartment for some reading and research. More specifically, I checked out the newest issue of the Research Center for Ars Vivendi’s newsletter, which features several articles about the Sagamihara Stabbings by Nagase Osamu and Tateiwa Shinya. I was fortunate that Nagase-Sensei was on Skype as I finished reading his piece, and I had a chance to go back and forth with him about his thoughts regarding the international implications of the stabbings as a member of the UN CRPD.

Invigorated by  my talk with Nagase-Sensei, I decided to do some more reading and prepare for the second chapter of my dissertation. I read a particularly interesting article, which discusses how Japanese policymakers skirted around SCAP orders forbidding special treatment of wounded veterans by mobilizing blind movements to justify the creation of the Law for the Welfare of Physically Handicapped Persons in 1949. In essence, the article said that Japanese policymakers couldn’t use persons with physical disabilities as justification for the law because they closely resembled (or were) veterans.  Therefore, they had to find a group of disabled individuals who could not easily be associated with the war. They ended up settling on blind individuals because 1) organizations for the blind were well structured and had existing in Japan for decades; 2) organizations for the blind had long campaigned for better work conditions and accommodations, 3) blind individuals were explicitly forbidden from becoming soldiers. A convenient scapegoat, organizations for the blind became even more valuable as a tool for justifying policy reform after Helen Keller’s visit to Japan in 1947. Keller was paraded around the country by the Japanese government, who put her on a special train and used her peace mission as an excuse to unite otherwise disparate organizations for the blind and therefore bolster their case for creating the Law for the Welfare of Physically Handicapped Persons. The law, which nominally supported all persons with disabilities, was liberally interpreted to provide welfare coverage to the nation’s many wounded veterans (the exact number is unknown) at the expense of other persons with disabilities.

On Thursday, I was visited by a home doctor who confirmed that my pneumonia seems to be dissipating. To celebrate the good news, I went out to lunch before meeting with four representatives from the Japanese Ministry of Land, Infrastructure, Transportation, and Tourism (MLIT). The ministry reached out to me a few weeks ago and asked if I would be willing to act as a consultant for their newly developed barrier-free guidelines for hotels and hostels. I was pleased to see that the guidelines they developed either matched or exceeded ADA standards of accessibility in many ways, and that they had considered accessibility for individuals with various kinds of disabilities: physical, intellectual, sensory, and otherwise. After two hours of conversation, during which time I provided a fair bit of structured criticism and feedback, we called it a day. All parties seemed satisfied by the end of the consultation session: I know that I, for one, look forward to working with the ministry again in the near future.

Of course, Thursday was also Valentines Day. I’d be remiss if I failed to mention that I spent the evening with my fiance. She gave me chocolates and roses, and we grabbed a nice Korean dinner outside before relaxing at home.

On Friday, I continued my dissertation research by reading several articles about the construction of ‘human rights’ and demilitarization in postwar Japan via the Potsdam Declaration and the Constitution of 1946. The readings provided some critical context for the article I read earlier in the week about wounded veterans and the mobilization of blind organizations to justify sweeping welfare reforms. My reading would be cut short, however, as I had to run out yet again for some exciting plans. At around noon, I met with Heike Boeltzig-Brown (Institute for Community Inclusion at UMass Boston) and Hiroya Banzono (International Christian University) to discuss their new project: “A U.S.- Japan Collaboration on Disability and Self-Advocacy in Higher Education.” Boeltzig-Brown and Banzono asked me to participate in a panel event that will take place this October, in which various students, faculty, and staff connected to disability and education in Japan and the United States will talk about their experiences related to self-advocacy and accommodation. The event will also feature a leadership training and networking session: it looks really promising, and I can’t wait to take part!

On Saturday, I continued reading for my dissertation, but for the most part took the day off to rest and recuperate from a long week. Indeed, I took today off as well, as next week promises to be a long week of archival work.

I must say that the more time I spend on my dissertation project the more enthusiastic I get about it. There are so many interesting connections and factoids related to disability history in Japan that I never would have known without starting this dissertation. It’s really exciting stuff, and its greatly informed my practical work as an activist!

I look forward to giving you all another update next week! Stay tuned.

The Calm Before the Storm

Hey all!

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

This week was more-or-less devoted to my gradual recovery and the completion of my script/powerpoint for an upcoming TED talk that I’m due to give in March. Having said that, I also did a bunch of other things (related to both work and pleasure) and paved the way for resuming my dissertation work next week.

On Monday, I took the time to hammer out an itinerary for the next month. I needed a firm start date on which I’d return to my dissertation and carry out my interviews and fieldwork. After completing my itinerary, I met with several nurses who told me that I needed to rest for a while longer after checking my blood pressure, oxygen, and pulse. Not wanting to aggravate the smoldering remains of my pneumonia, I decided to take it easy for the rest of the day.

On Tuesday, I finished the first draft of my script and powerpoint for my TEDx talk in March. The event, TEDxFulbright Tokyo, will feature prominent speakers from a wide range of disciplines who have something to say about “finding a new path.” For my part, I’ll be speaking about the communication deficit that has plagued many access-making activities in Japan and the United States as of late and what I think we can do about it. I’d be happy to share my materials if anyone is interested!

On Wednesday, I Skyped with some of my friends and family back home and took care of some paperwork that will allow me to extend my visa. My current visa expires in August, but I’d like to remain in Japan until the fall of 2020 if at all possible. After all, my dissertation starts and ends with the 2020 Olympic and Paralympic Games, and it’d be a shame if I could not witness them. While nothing is set in stone (yet), it appears as if I should be able to extend my stay without issue. I’ll keep you all posted. Anyway, I also took some time on Wednesday to look for apartments that would provide a more suitable living environment in the event that I do stay past August. One of the biggest problems I’ve faced since moving into my current apartment in Odaiba is its remote location. Being far away from most residential areas has prevented many caregivers from coming to see me. I suspect that by moving to a more central location, I’ll be able to increase my caregiving hours without much fuss.

On Thursday, I went to City Hall to confirm my suspicions about moving and caregivers. As it turns out, the disability welfare representatives were also supportive of my moving. They couldn’t seem to grasp why I lived in such a remote location if I needed care, and I couldn’t really blame them for that. I explained that my current apartment was the only option available given my physical/financial limitations, and that I had consulted many realtors to no avail. The City Hall representatives eventually agreed to provide me with more care if I found a new apartment in which I could live by myself. Indeed, “living by myself” was key, as living with my fiance meant that my ward would cut my caregiving hours in half (from 700 to 350). Apparently, it doesn’t matter that my fiance has a full-time job and her own life/obligations: the fact that she lives with me is enough to reduce my caregiving hours. With little alternative, I began to reach out to realtors to find an accessible one-bedroom apartment. Alas, I ran into similar complications to those which I encountered before I arrived in Japan: despite calling 10+ offices, I was unable to locate a single apartment. After reaching out to my caregiving coordinator (and her friends) for support, I found three accessible apartments in Tokyo. Three, out of how many hundreds of thousands! Anyway, it’s a place to start, and I hope to view them sometime next week.

Also on Thursday, I delivered a digital guest lecture on accessibility and aging in Japan at the University of Oregon. The audience seemed receptive, and I got some great questions about the preparation required to travel to/from Japan with a disability. How can old age and/or disability affect our ability to secure/file paperwork related to medical clearances and the travel experience? How can they affect our capacity to travel inside of Japan, and what do they mean for the creation/consolidation of kinship networks? Such questions are interesting, but I was most surprised by a question posed by a first-year PhD student: what do I intend to do after I graduate? I paused, and told the student that I’m currently looking into both academic and consulting positions. In an ideal world, I’ll find a way to pursue both kinds of work, but with the academic job market looking the way it is, that dream may never become a reality…

On Friday, I had some trouble breathing and felt a bit under the weather. Knowing full well that my body was still recovering, I decided to spend the day in bed. Still, I managed to get a bit of work done and Skyped with Garr Reynolds, a veteran of the TEDx circuit and my appointed advisor for March’s conference. Garr and I talked through my script and powerpoint presentation, which he felt were in need of only minor revisions. I thanked him for his time and hung up before promptly passing out for the evening.

My weekend so far has been a final period of relaxation and ‘calm before the storm.’ I intend to start working on my dissertation again tomorrow morning…but that’s not all! I also have a lot of other things scheduled for this coming week, including two consulting sessions. The first is for a English-speaking cafe that will open up in Tokyo in the near future. The cafe owner wants to create a non-academic space where Japanese and foreign speakers of English can mingle and learn from one another. He’s contacted me to help him make the cafe accessible for persons with all kinds of disabilities, and I intend to help him to the best of my ability. The second consulting gig I’ve been asked to participate in is for the Ministry of Land, Infrastructure, Transport, and Tourism. The ministry has asked me to join a task force charged with revising the barrier-free guidelines for all hotels and hostels in Japan ahead of the 2020 Olympic and Paralympic Games. I’m very excited to hear what they have to say!

Stay tuned, everyone, as next week’s post is sure to come with some exciting updates. As always, thanks for reading, and feel free to comment/reach out anytime!

TEDXFulbright TOkyo
A Poster For My Upcoming TEDx Presentation

Release and Relaxation

Hey all!

This week’s entry will be rather short. I’ll go back to my day-by-day posting next week for reasons that will be explained below!

After spending ten days in the hospital, I was discharged on Thursday morning (exactly one month since I first began to feel ill). I went straight home and dropped off my things before running out for a couple of errands. A good night’s sleep allowed me to venture out of my complex again on Friday. While I only managed a brief sushi lunch, I cannot tell you how great it tasted. As it turns out, liberation does have a flavor, and it’s a combination of eel and fatty tuna! On Saturday, I expanded my collapsed lungs by going out to karaoke with some friends. It felt great to be part of a community again, and I really enjoyed myself. I’m currently recuperating from all the beers and belting, but I plan to slowly ease my way back into my work/research starting tomorrow. There’s a lot on the horizon: conferences on international disability, guest lectures for universities in Japan and the United States, accessibility consulting work for the Japanese Ministry of Land, Infrastructure, Transport, and Tourism, and more!

I’ll have a lot more to report next week. Stay tuned, everyone!

Post-Karaoke
Post-Karaoke Bliss

Pneumonia and Hospitals

Hello all,

First, an apology. I realize it’s been a month since I’ve posted anything substantial. For those unaware, I’ve been extremely ill and barely able to get out of bed since the new year. A week ago on Monday (1/21), I found out why: I have pneumonia. What I thought would be a routine hospital visit turned into a two-week minimum inpatient experience. Since being admitted, I’ve received a broad spectrum of antibiotics to cure my condition. I’ve also experienced a medical environment drastically different from anything that I’ve encountered in the U.S.

I suspect that my personal experiences at the University of Tokyo’s Hospital may inform the trajectory of my research about disability rights in Japan over the last few decades. Indeed, early conversations with my friends in the disability community suggest that there are larger frameworks of surveillance and institutionalization at play than I had originally anticipated in the present. Before I discuss any of that, however, let me point out some similarities and differences in the healthcare I’ve received as an inpatient in Japan and the United States.  

Autoethnography and Comparative Health Frameworks

1. In the United States, I am routinely afforded a single occupancy room due to my immunosuppression. That room is covered by my health insurance. In Japan, however, such rooms are at a premium, and they tend to cost an absorbent amount, even with national health/disability insurance. My current bed, which is in a four person suite, costs around $50 a night. While free rooms are available in the hospital, they are dolled out on a lottery system. I was not lucky, so I’ll have to pay a significant amount for my stay and be at risk for exposure to additional conditions.

2. In terms of facilities, rooms are equipped with a bare minimum in Japan. Beds are separated by thin curtains, and utilities/services are scarce. Like much of Japan, the University of Tokyo’s hospital does not have WiFi. It also charges additional fees for nearly all amenities, including but not limited to soap, water, tissues, towels, and gowns.  Furthermore, the hospital requires that patients pay an additional fee to use the TV and refrigerator. I have not encountered such itemized charges in the U.S., but I suspect they’re lumped into my medical bill. The difference is that my U.S. health insurance covers that bill, while my Japanese insurance does not.

3. Perhaps the most striking difference that I’ve encountered with respect to inpatient policy between Japan and the United States is a community-oriented care schedule. The University of Tokyo’s hospital has a hospital-wide lights-out policy at 9PM, at which point everything goes dark. All guests are asked to leave an hour before lights out. But lights out is not the only community oriented policy at the hospital: others include prohibitions on outside food and drink (barring approval from a physician [nurses cannot approve patient requests]) and removal of large-size personal belongings from patient rooms (for instance, my power wheelchair was relocated to another room for the duration of my stay). Such policies are few and far between in the United States, where healthcare and facilities are individualized.

4. I have also experienced many differences related to the kind of medical treatment that I’ve received in Japan and the United States. For instance, I was not connected to a heart or oxygen monitor in Japan despite being admitted to a cardiac ward for pneumonia. Such constant monitoring is routine in the United States, while measurements are taken only periodically in Japan. Indeed, I’ve encountered many barriers to accessing medical equipment in Japan that I often use in the United States. For instance, I’ve had to fight with nurses and doctors to secure a nebulizer and ventilator as well as additional pulmonary therapies without which my condition may not improve. I’ve also had to deal with changes in my medicine, including dosage alterations that have transformed the delivery method in meaningful ways. I now have to take powdered forms of my immunosuppressive drugs that I cannot prepare by myself and which to my knowledge are not available in the United States. Hopefully I’ll work out a solution before I return next year.

5. In addition to access to medical equipment, I’ve also been subjected to a battery of tests and procedures that arguably have nothing to do with my pneumonia. Since being admitted, my doctors have been very inquisitive about my underlying neuromuscular condition (Glycogen Storage Disease Type IV, Rare Variant). I appreciate that only six people in the world are affected by the condition, but I do not think that justifies the treatment I’ve received: additional tests, including liver and blood scans, aimed at identifying elements of my disease. The doctors have indicated that they wish to know more about my condition so as to be able to provide better healthcare for acquired illnesses like pneumonia, but I cannot help but wonder if that’s really the case. After all, my doctors in the United States have cured my previous pneumonias without conducting such procedures. Suffice it to say that I am skeptical, and feel like a lab rat under surveillance. Especially because I cannot be discharged until I have a doctors approval, and his/her approval may be contingent upon such extraneous tests. Having gone through this experience, I can begin to understand some of the struggles faced by my disabled kin in Japan.

General Thoughts

Now, I’d like to give a few general thoughts about my experiences thus far. Suffice it to say that I can understand how some persons with disabilities (and their ‘able-bodied’ counterparts) may become institutionalized for years at a time – especially if they don’t have friends or family to support/advocate for them. I’ve been fortunate that my friends and family have come to visit me on a daily basis, bringing me food and supplies as well as conversations that have sustained my will in an otherwise bleak environment. Without their support, I may not be able to recover, let alone discern what may or may not be a false diagnosis/extraneous testing.

I’ve also become acutely aware of the cost of hospitalization in Japan. While national health insurance and disability insurance may cover the bulk of treatment costs, the incident expenses can rack up quickly. It isn’t hard to imagine how someone admitted for even a short period of time may find themselves in massive debt out of pocket with little recourse. Their experiences of debt may expose them to additional risks, including but not limited to lifestyle changes, compound injury, and hunger. This may be another avenue to pursue – if not for my dissertation, for my larger research. Tied to the idea of accruing incidental expenses is the importance of physicians’ clearance. If doctors can use incidental conditions to ensure that a patient is unable to be discharged, they can theoretically control them by exposing them to additional costs. I do not wish to offer conjecture that this happens frequently (I need more data to back up such a claim), but it does provide another base for moving forward with my fieldwork in the future.

Finally, I wanted to speak about some of the other barriers that I’ve encountered with respect to medical systems in Japan and the United States, including those that I’ve somehow managed to avoid. For instance, linguistic and cultural barriers. For the most part, I have been able to converse with my Japanese doctors and nurses with relative ease, apprising them of my symptoms and inquiring about relevant treatments. I appreciate that not everyone has the opportunity to do so, and that they may have  different experiences based on their capacities. Indeed, I understand that language is not the only differentiating factor in medical experience: race, religion, gender, sex, affluence, etc. all play a role in determining the kind of care that individuals are able to receive in Japan and the United States.

Wrapping Up 

I’m due for another round of tests tomorrow, and barring any unforeseen developments I’ll be out of the hospital by the end of the week. I’ll keep you all posted!

 

img_1538
Olympic Mapping Event (Pre-Admission)

Holidays and Hospitals

Hey all,

Just a quick note to say that I’ve taken the last month off for the holidays. While I was able to enjoy the last couple weeks of December, I became quite ill around the new year and have spent most of my time in bed. As conciliation for my lack of posting, please find attached a couple of photos of me enjoying myself at a local Anime convention and conference on the UN’s Convention on the Rights of Persons with Disabilities!

Assuming I recover over the course of this week, I’ll resume regular posting next Sunday.

Cheers,

Mark

Teaching and Triumphs

Hey all!

In an effort to get myself back on an every-Sunday posting schedule, I’m writing a relatively short entry this week. Don’t let that discourage you from reading, however, as this week was certainly an eventful one!

On Wednesday, I spent most of my morning reading about leprosy literature in prewar Japan and thinking about the structure of the first chapter of my dissertation. There are still bits and pieces of that chapter that need to come together before I submit it for review, but I think that I’m on track to have a completed version by the years’ end. I also used some of my free time on Wednesday to finish my quarterly progress report for the Japan Foundation and write my annual progress report for Penn regarding my dissertation. Still, perhaps the most productive and rewarding part of my Wednesday was a conference presentation I delivered in the evening at the Japanese Ministry of Education, Culture, Sports, Science, and Technology (MEXT). Speaking to one-hundred and twenty representatives from schools across Japan, I discussed the barriers faced by students with disabilities from abroad and ways of dismantling those barriers. I was somewhat disheartened (but not at all surprised) to see hesitation when I asked the room how they would accommodate someone with disabilities like mine in the event that they applied to a study abroad program. After some discussion, I shifted the conversation toward the importance of creating environments where any/all individuals can express their needs, and where negotiations can occur between academics, administrative officials, engineers, disabled ‘experts,’ and other relevant parties. On the whole, I think that the conversation went well and my message got across. Here’s hoping it does something to help someone somewhere down the road.

On Thursday, I woke up early and got ready to head out the door for a long day at Toyo University. After arriving in the early afternoon, I met with Shingo Ashizawa, a professor in the Department of Regional Development Studies who had invited me to give a series of guest lectures to his classes on global dynamics and tourism. Before joining Ashizawa-Sensei’s class, I sat down with him for lunch. It was great to catch up after a long time apart and hear that he’s been keeping busy by traveling the world to advance his research, which focuses on study abroad initiatives between Japan and other countries. After finishing our meal (curry for me, katsu for him), Dr. Ashizawa and I went upstairs to meet with the president of Toyo University, Dr. Makio Takemura. Dr. Takemura was my advisor when I studied at Toyo as a Fulbright Fellow, and I was really excited to see him again. We spoke about the ways in which my work on Japanese Buddhism shaped my understanding of accessibility and desire to pursue disability studies, as well as Dr. Takemura’s recent activities as president. Apparently, Toyo University will be opening a new campus in a couple of years dedicated to (global) interdisciplinary studies.  I can’t wait to see what their faculties look like!

After finishing up my meeting with Dr. Takemura, I followed Ashizawa-Sensei to his third period class.  To prepare for my lecture, I had asked that the students read a short article in The Japan Times about recent access-making activities in Japan tied to the Olympic and Paralympic Games. Much to my surprise, the students had not only read the article but also appeared eager to chat about it. We discussed what it means to make accessibility in Japan today (according to the article) and how we could develop a research question, method, and plan based on the data presented therein. For a class focused on pedagogy, the conversation went relatively smoothly: I had each student develop their own research question, and for those who could not I asked them to consider why it was hard for them to do so. After formulating their question, I had the students discuss possible research methods with one another before talking about access to resources and the development of a feasible timeline. On the whole, I think the class went rather well. But I was even more impressed with the second class I taught in the afternoon. Unlike the first class, which focused on pedagogy, the second class was entirely devoted to content. I gave a mini-lecture on the history of access-making in Japan before inviting the class to consider a fundamental problem borne out of that history: if you can’t create access for everyone, how do you create it for as many individuals as possible? Breaking the class into three groups, I had the students brainstorm ways of addressing this problem. One group suggested the invention of new assistive technologies. Another group suggested asking persons with disabilities about their needs. And the final group suggested coming up with multiple options for persons with disabilities to choose from. I could not have planned such an outcome, but it provided the perfect opportunity to talk about how best to meld these strategies and introduce my own work on co-design as embodied by my Accessibility Mapping Project. The class finished on a high note, talking about our role as users and activists in the creation of an accessible environment, and I left Toyo with a sense of accomplishment and pride. I look forward to coming back to teach again at some point in the near future.

On Friday, I headed to the University of Tokyo to meet with Kiriko Takahashi, a specialist in disability education with appointments at Todai’s Research Center for Advanced Science and Technology and the University of Hawaii. Dr. Takahashi introduced me to her boss, Robert Stodden, an expert on American disability policy who was visiting Japan on his way over to China. She also introduced me to Amit, another visiting researcher  from Israel who had come to study disability in Japan (along with his wife). The five of us spent the better part of the afternoon talking about our respective research projects and the state of disability police and justice in Japan, the United States, and Israel. It was a really productive conversation, and one that I hope to continue in the future. Alas, it had to come to an end, and I headed home to grab a bite to eat. Before going to bed, I spent some time Skyping with Frank Mondelli, a dear friend who’s currently studying the history of assistive technologies for persons with hearing impairments in Japan at Stanford.

On Saturday, I woke up early in the morning to a house filled with four caregiving companies. After several months and much uproar, it’s looking like I may finally get caregiving coverage at night (and possible more during the day). I won’t say any more (less I jinx the situation), but I have a good feeling about things….

After my caregivers left, I rushed out into the cold to attend a lecture series in honor of the 25th anniversary of the Japanese NGO Network on Disabilities (JANNET). The conference featured a range of speakers, divided into two core sections: “How to set up an accessible meeting?” and “Recent Activities of Disability-Related Organizations.” After a series of opening remarks from Naoji Shimizu, the current chair of JANNET, the first presentation was delivered by Miwa Morikawa, a representative from the Accessible Design Foundation of Japan. Ms. Morikawa’s presentation focused on the barriers to access faced by persons with disabilities when it comes to work-related meetings, as well as ways to resolve those barriers. I won’t spoil everything, but you can read more about her work here. Of equal interest to Ms. Morikawa’s presentation were ensuring presentations by Shin’ichiro Koide (of the National Federation for the Deaf), Akiko Fukuda (of the Japan Deafblind Association), Sayako Nogiwa (of the Association of Aid and Relief [AAR] Japan), and Chiharu Morita (of the Japan International Cooperation Agency [JICA]). Each presentation provided valuable information for my dissertation project related to the history of disability organizations, successes and failures of current disability policies, and the global extension of Japanese standards of accessibility. If there’s one thing that I’ve gained from attending all of these conferences, it’s ammo!

Today, I was supposed to attend a conference dedicated to Anime and Manga Fan Studies oat Sophia University, The event is being hosted by my dear friends Patrick Galbraith and David Slater. Unfortunately, I’m not feeling all that great so I’ve decided not to attend. Sorry guys. Thankfully, this next week looks pretty empty, so I can get lots of rest and recover (when not writing my dissertation, that is).

As always, thanks for reading, and stay tuned!

 

Castles and Conferences

Hey all!

This past week was fairly eventful: I gave a conference presentation at Nanzan University in Nagoya, was filmed for a Japanese Television show, taught a course about the virtues of Universal Design, and more!

After touring the olympic village in Asaka and giving a lecture on Universal Design (UD) on Tuesday, I had the opportunity to reunite with an old friend on Wednesday: Lekakeny Rumpe. Rumpe and I became friends when I was studying Esoteric Buddhist Philosophy at Toyo University from 2014-2015. At that time, Rumpe was working on urban planning initiatives between his native Kenya and Japan at Toyo, and we spent many nights drinking and talking about life, the universe, and everything in between.  It was good to see Rumpe again and hear that he’s back in Japan trying to drum up business connections for affordable/sustainable development projects in Africa. I hope he has nothing but success!

After meeting with Rumpe, I dashed over to Shinbashi to grab a cup of coffee with four students from Meiji Gakuin University’s Department of Social Welfare. Those students had been given the arduous task of interviewing me about my life and work by their professor, Kyoko Hamashima, whom I’ve become friendly with via my involvement in DPI Japan. The interview went fairly smoothly, and the students and I went back and forth about differences in social welfare systems in Japan and the United States. They spoke about their respective interests in the welfare of children, the elderly, and the poor, and I explained how, in my mind, those interests were all explicitly connected. I urged them to think about how we might develop a comprehensive welfare system, as opposed to a siloed one, and what the implications of both systems might be.

On Thursday, I woke up early and headed to the University of Tokyo to meet with my advisor, Dr. Satoshi Fukushima. Dr. Fukushima and I spent a few minutes catching up before we were joined by a television crew from RHK, a Japanese broadcasting company who filmed us talking about the recent scandal re: the inflation of employment statistics for persons with disabilities by the Japanese government. Apparently, that segment will air before the end of the year, so I’ll keep you all posted. In any case, Dr. Fukushima and I continued our conversation after the cameras stopped rolling, and before I knew it we’d spent the better part of 12 hours together. It was really great hearing his opinion about my work on Buddhism and disability, and although we didn’t have a lot of time to discuss my dissertation I suspect that we’ll have plenty of opportunities in the future.

On Friday, I had a home nurse come out to the apartment for the first time to evaluate my condition. Or, at least, that’s what I thought was supposed to happen. In fact, the nurse came out to have me complete a ton of paperwork over the course of two hours and did not examine me at all before announcing that she’d be unable to return for at least two weeks (and even then, she couldn’t accommodate my schedule). Still, I suppose late service is better than no service. I took the rest of the day off to recover from a busy work week and do a bit of research related to the remaining sections of the first chapter of my dissertation. I knew what lied ahead on Saturday: a trip to Nagoya on the bullet train.

After waking up early and rushing out the door, I managed to get on the bullet train on Saturday morning along with my fiance. The ride itself was fairly uneventful, and we spent most of it watching a movie. It didn’t hurt that we were put in a private ‘multipurpose’ room that was designed to accommodate all kinds of wheelchairs and mobility devices, and we didn’t have to deal with snoring passengers and crying children. After arriving in Nagoya, my fiance and I went our separate ways: she hung around the station to get a bite to eat, and I ran across the street to attend a special lecture on the the accessibility issues surrounding the rebuilding of Nagoya Castle. The lecture was hosted by Takahashi Gihei of Toyo University, who I was glad to see again in a new setting. After the lecture concluded, I got together with a bunch of the organizers for a reception/drinking party. Ten of us went downstairs to a bar and spent around 2-3 hours talking about our impressions about the Nagoya Castle conundrum and our jobs re: the development of accessibility in Japan. It was great to talk about my research in a free and open environment with individuals directly affected by it, but it was even more rewarding to make new friends and feel like I’ve become part of a community.

After the drinking party concluded, I reunited with my fiance and headed to AJU, an independent living center in Nagoya where we were due to spend the night. I was invited to stay there last week after meeting some of the people who work there at the DPI Japan Policy Conference. I was delighted to find that the room we were put up in was not only completely wheelchair accessible, but also had a hospital bed and all of the amenities I needed to feel right at home. I slept well, and I’m glad that I did – after all, I had a conference presentation on Sunday at Nanzan University.

Getting to the conference venue at Nanzan University was something of a challenge. The university itself is located in the mountains, and you have to climb many hills in order to get there. It didn’t help that I was with my fiance, who was carrying our heavy luggage up and down the rugged terrain. Honestly, I feel terrible about the whole ordeal, but I’m glad that we made it in the end. As I walked through the gate to campus, I ran into Jolyon Thomas, my dissertation advisor from the University of Pennsylvania and one of my co-panelists. We walked to the venue together, where I met with Ben Dorman, the organizer of the conference. Ben is also interested in Japanese disability studies, and we had a lot to talk about in terms of policy, kinship, and media. Before we could get too far into the weeds, however, we had to cut our conversation short as my panel was due to start. On the whole, I was happy with my presentation, which focused on the successes and failures of recent access-making activities in Japan. I got some good feedback about my theorization of disability violence, and I hope to use it to refine the fifth chapter of my dissertation somewhere down the line.

After sticking around for another panel and the closing of the conference, I headed back to Nagoya station, where I met my fiance. We grabbed a bite to eat before hopping back onto the bullet train and making our way home. Although our trip was only two days long, it was extremely tiring for both of us, and we felt like we needed a lot of rest by the end of it. We slept well on Sunday, but the madness continued early Monday morning. I rushed to the hospital for my monthly check-up, only to be kept waiting for around 5 hours while my doctor reviewed my blood test results. In the end, everything was fine, but I’d lost a day of productivity. What really made my blood boil (no pun intended) was that I had asked my doctor two months ago to help me secure a ventilator in Japan, and he flat out admitted to me that he hadn’t done any research about possible vendors during the course of our conversation. I told him that I had run out of parts for the ventilator that I had brought with me from America, and he immediately called another doctor, who arranged an appointment for me to meet with a vendor later this afternoon. I’ll be leaving for that appointment shortly, but I wanted to take the time to write and let you all know what’s going on!

So there you have it. As always, a busy week with lots of twists and turns. This next week promises to be equally busy: I’m due to meet with 120 students from MEXT on Wednesday, give a lecture at Toyo University on Thursday, chat with a group of professors from the University of Hawaii on Friday about disability policy, attend a workshop about accessible workplaces at the JSRPD on Saturday, and take part in a conference about fan studies and Japanese anime at Sophia University on Sunday. As always, thanks for reading, and stay tuned!

Nanzan Conference Pic
Speaking at Nanzan University