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!

 

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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

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