Meetings and Memoirs

Hello all!

I’ve had a fairly exhausting week, but I managed to accomplish a lot!

On Monday, I went to the University of Tokyo’s hospital for my monthly check up. As usual, the department ran several hours late, and I was forced to wait it out in a room full of roughly one hundred people with various unknown illnesses. As a person with (medically induced) immunodeficiency, I always find the prospect of waiting in a room full of potentially sick people daunting: the Japanese public healthcare system certainly doesn’t help allay my fears. Thankfully, I was eventually seen by my cardiologist and given a clean bill of health alongside a six-week supply of medication. By the end of the eight hour ordeal (from 8AM until 4PM), however, I’d lost my capacity to focus on work, so I decided to call it a day.

On Tuesday, I began making inquiries about the possibility of extending my visa. My current “Cultural Activities” visa is due to expire at the end of August, and I wanted to make sure that I have plenty of lead time to extend it in case anything goes wrong. I reached out to Ritsumeikan University and the University of Tokyo, eventually learning that the latter has an internal consulting service. After an exchange of e-mails back and forth with that service, I received a list of necessary paperwork and forms to fill out in order to process my extension request. I began to fill out those forms, which I showed to a representative from the consulting firm on Thursday. For now, it looks like everything is in the clear (although I cannot apply for my extension until mid-May). Still, I’d rather be safe than sorry, and I’m glad that I started the process sooner rather than later.

Also on Tuesday, I had the chance to Skype with Bryan Lowe of Vanderbilt University (soon to be Princeton University!) Bryan and I have met on a couple of occasions, and I find his work on purity and scribes in Nara Japan to be incredibly useful for my own work on religion and disability. Bryan and I took the opportunity to discuss my project on the relationship between defilement and access in medieval Japan, and he was even so kind as to send me a list of sources to check out. Bryan, if you’re reading this, thanks so much!

On Wednesday, a technician came out from my ventilator company to inspect the borrowed unit and ensure that my current settings are adequate (they are). After he left, I dove straight in to Tateiwa Shinya’s new book on patient movements in postwar Japan. As always, I found Tateiwa’s work really insightful, and his extensive bibliography gave me some ideas for the second chapter of my dissertation. I had to shelve those ideas for the time being, however, as I had a meeting with my scholarship administrators at the Japan Foundation. The meeting went swimmingly: I had a chance to update my handlers (who are really more my friends) about my current research and its connection to my activism and daily life. Although I found a soft ending point for our conversation, it seemed as if everyone wanted it to continue. Indeed, I suspect that I’ll have a chance to pick it up again at some point in the near future in the form of a public-facing lecture at the Japan Foundation headquarters.

On Thursday, I dropped in at the University of Tokyo’s Barrier-Free division to meet with the secretary for my department. We discussed many things: my living situation, visa status, career prospects, and, of course, research developments. What I thought would be a short ten minute conversation turned into a two hour dialogue. I certainly wasn’t complaining, however: if there’s one thing I like, it’s talking about accessibility! In any case, I had to cut our talk short to attend a prep session for the U.S.-Japan Collaboration on Disability and Self-Advocacy in Higher Education (a workshop which is scheduled to take place this fall in Tokyo). The meeting was attended by many familiar faces, including but not limited to Heike Boeltzig, Hiroya Banzono, Shin’ichiro Kumagaya. While I can’t go into too much detail about the contents of the meeting, it’s safe to say that we discussed a great many things related to disability advocacy and representation.

On Friday, I returned to my historical dissertation research by turning to memoirs of sanatoria directors and administrators in Japan which recount their experiences during the 1940s and 1950s. Those memoirs were particularly interesting when viewed in light of the Ministry of Health’s A History of National Sanatoria, which provided a structural  overview of the system in which their principle actors lived and worked. Without going into too much detail, the literature I was reading illustrated how the experiences of sanatoria administrators, like those of their patients and clients, were not at all uniform. Each administrator had to negotiate a unique set of circumstances, informed as much by practical and economic concerns as moral and civic responsibility.

On Saturday, I woke up early and headed out to Saitama (around a two-hour train ride from my current residence) to attend the final lecture of two giants in the field of Universal Design in Japan: Takahashi Gihei and Kawauchi Yoshihiko. Both professors are due to retire from Toyo University’s Department of Human Environmental Design next month after long and successful careers. I’ve learned a lot from both Takahashi-Sensei and Kawauchi-Sensei during my short stay in Japan, and I’m sure that I’ll continue to learn from them as I work through my dissertation. For now, I wish them nothing but the best and hope that their transition toward (additional) consulting work goes smoothly.

On Sunday, I spent the majority of my day designing a PowerPoint presentation for my upcoming TED talk (to take place in Tokyo on March 17th). As always, the design process took several hours longer than I anticipated because I’m incredibly picky about the images and effects that I use. Nevertheless, I was happy with the end result, and I suspect that it’ll go over well when I give my talk. I suppose I’ll have a chance to find out, as there are several scheduled practice sessions between now and then.

Today, I conducted some research into the formation of Japan’s laws and policies related to the education of children with disabilities in the postwar period: specifically, those related to children with intellectual and psychiatric disabilities. My research was mainly focused on documents produced by the United States Education Mission to Japan and the Committee of Japanese Educators. After working for a while, I ran out to Toyosu to walk around the mall and take a much-needed break. There, I met up with Nathan Hopson, one of my senpai from Penn who currently teaches at Nagoya University. Nathan and I discussed our respective research projects at length as well as the costs and benefits of job-hunting in Japan and the United States. I learned a lot from him, and I appreciated how broad and deep our conversation was. Looking forward to talking more in the future, Nathan!

That’s all I have for now, everyone. This coming week also promises to be a busy one, with daily meetings and dissertation work. As always, thanks for reading and stay tuned!

(I don’t have any great photos from this week, so here is the last slide of my TED talk!)

TED Talk Final Slide

Archives and Acquaintances

Hello all!

This week was very much a “nose to the grindstone” affair. For the first time in a couple of months, I spent at least 3 hours each day digging through [digital] archives and books gathering information for the second chapter of my dissertation, which focuses on the reconstruction of the Japanese welfare system in postwar Japan (1945-1960) and its effects on persons with disabilities. I also attended a forced sterilization trial at the Tokyo District Court which heavily tied in with that research, as it centered around the now defunct Eugenics Protection Law (1948).

On Monday, I Skyped with a dear friend of mine and fellow disability studies PhD student, Frank Mondelli, before diving in to a host of digital archives. Among the archives I searched were the U.S. State Departments Records on the Internal Affairs of Japan, SCAP’s Summation of Nonmilitary Activities in Japan and Korea, the National Diet’s digital records archive, and others. I was rather displeased (but not at all surprised) to find relatively little mention of disability in the above English language sources. As it turns out, the Allied Powers were apparently more concerned with democratization and demilitarization than disability itself. Indeed, they seem to have paid little attention to the consequences of democratization and demilitarization on disabled populations (sans veterans, whom they attempted to deprive of special privileges.)

On Tuesday, I attended a forced sterilization trial at the Tokyo District Court House. The plaintiff, Saburo Kita (a pseudonym), came forward seeking compensation for his forced sterilization under the Eugenics Protection Law, which occurred approximately sixty years ago when he was 14. Representatives from the Japanese government argued that Mr. Kita  was not entitled to compensation as his sterilization occurred more than twenty years ago (the statute of limitations) and questioned why Mr. Kita did not attempt to seek reparations up until this point. Mr. Kita replied that he was unable to seek reparations as he did not receive a proper explanation regarding the surgical procedure that he was forced to undergo. He also indicated that he was unable to vocalize his grievances in an environment where eugenic ideology was actively taught in public schools (this was true in Japan at least until the abolishment of the Eugenics Protection Law in 1996) and felt significant shame about his inability to bear children. So much so, in fact, that he did not tell his wife until shortly before she passed away.

The trial was interesting for a number of reasons. That Mr. Kita is finally able to come forward with his claim seems to suggest that Japan’s atmosphere is changing with regard to attitudes toward eugenics and disability. But is this change a function of the passage of the Law for the Elimination of Discrimination Against Persons with Disabilities (2016)? The preparations for the upcoming Olympic/Paralympic games in 2020? The nation’s aging population, declining birthrate, and shrinking workforce? Perhaps some combination of all of these factors and then some? What does Japan’s shifting landscape mean in light of routine reports of violence and abuse in the media and tragic events like the Sagamihara Stabbings of 2016? There’s a lot to unpack here, that’s for sure.

What I was most struck by was the attendance and procedure at the trial (and after it). Before the trial began, the presiding judge went out of his way to call attention to the courtrooms’ accessibility features. He noted that a sign language interpreter was present in the room, and that the room was equipped with two video monitors for presentations. The judge also pointed out that there were several wheelchair spaces (three of which were occupied), and that it was ok to move around and leave the courtroom as necessary for comfort. I was delighted to see such treatment of accessibility, especially at a trial centered around disability issues. I was less delighted, however, to find out that a debriefing session organized by a group in support of Mr. Kita was not accessible to me. The venue was some distance away from the courtroom, and it had a rather steep slope outside that prevented me from entering. Alas, it seems that the group changes venues after each hearing. Maybe the next one will be more suited to my needs!

On Wednesday, I read a bunch of literature related to the establishment of the Social Welfare Industry Act (1951) in Japan. The act allowed the Japanese government to offer subsidies to private healthcare facilities and integrate them into a national healthcare network. That network would help administer protections, treatments, and services as indicated by a slew of healthcare laws passed in the immediate postwar, including but not limited to the Public Assistance Act (1946), the Child Welfare Act (1947), the Eugenic Protection Law (1948), the Law for the Welfare of Physically Handicapped Persons (1949) and the Mental Hygiene Law (1950). The passage of these laws forms a linear narrative of healthcare in Japan, which is punctuated by the activities and protestations of various disability movements. In the second chapter of my dissertation, I trace the activities of those movements to illustrate how they found solidarity with one another (or not) and paved the way for a new age of disability kinship in the 1960s and 1970s. I’m still in the researching stage, but it’s coming along nicely!

On Thursday, I had a visit from a medical supply retailer about buying a new hospital bed. I’ve been renting my current bed for a while now, and while its nice and everything it’s rather costly to do so. In fact, it’ s probably cheaper for me to just buy a new bed (with the help of my national/disability insurance) than continuing to rent one! I’m pleased to say that the retailer was very nice (he helped me tighten up some bolts on my wheelchair!) and although I didn’t find any working options in his catalogue, I look forward to working with him in the future.

After finishing up with the retailer, I turned my attention back toward my studies. First, I read some exciting literature about the foundation of the Japanese Federation for the Blind (1948) and various patient movements in the late 1940s, including Tateiwa Shinya’s new book: Sick and Disabled Persons After the War: A Biopolitical Sketch of History 病者障害者の戦後 – 生政治史点描 (2018). Then, I headed out into Odaiba to meet with Jennifer McGuire, an assistant professor of sociology at Doshisha University in Kyoto. Jennifer finished her PhD at Oxford a couple of years ago. Her research focuses on issues surrounding mainstreaming deaf students in Japan with a particular focus on education. Our conversation covered a large swathe of disability history and politics in Japan, and I really enjoyed myself. I hope that Jennifer and I can continue our exchanges in the future!

On Friday, I awoke to something of a shock. My caregiver was supposed to arrive at 10:30 AM, but ended up coming quite late. Apparently, the train was delayed at one of his transfers, so he decided to take a taxi. Unfortunately, the taxi driver went the wrong way (twice) leading to his being over an hour late. While such delays are inevitable, they can be life threatening for persons with disabilities like myself. In a large city like Tokyo ( where train delays are common), one has to wonder how often lapses in care and serious incidents occur. Regardless, I was able to get myself together and get out the door in time to grab lunch with an old acquaintance from my time at Sophia University: Maxélle Neufville. Apparently, Maxélle went to Temple Law School after graduating from her undergraduate university and is now studying at their Japan campus. To think, we were only a few minutes away from each other for the last few years (while I was at Penn) and didn’t know! After a brief (but delicious) meal, Maxélle and I parted ways. Unfortunately, I couldn’t stay for too long as I had a Skype date with my dissertation advisor, Jolyon Thomas. Jolyon was able to give me some good advice about archival method, which I hope to carry with me into the National Diet Library come the start of March.

On Saturday, I read books for around sixteen hours straight. I won’t go into all the details here, but I learned a lot about disability magazines and literary culture in postwar Japan, as well as the connection between new diagnostic technologies available at that time and institutionalization.

On Sunday, I continued my reading, and buttressed it with a bit of translation work. More specifically, I translated the relevant/important clauses of many of the laws and policies that I’ve mentioned throughout this post. It was long and grueling work, but very rewarding in the end! To give myself a treat, I met up for dinner with a friend from my time at Toyo University, Kenki Kuibira. Kenki is now in his fourth year as an undergraduate, and is actively pursuing work in social welfare. I’m really proud of him!

Today, I spent all day at the University of Tokyo’s hospital being poked and prodded. I’m pleased to report that I received a clean bill of health (relatively speaking) and that my stamina levels have returned to normal (indeed, that should be evident, based on the flurry of activities described above)!

I have a lot of plans this week: Skyping with old friends/former mentors, meeting with representatives from the Japan Foundation, planning events with professors from the University of Tokyo and University of Boston, and more!

Thanks for reading, and as always, stay tuned!

Outside the Tokyo District Court
Outside the Tokyo District Court

 

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!

 

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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