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!
Avatar Robot Cafe
DPI Conference on CRPD
Dying with Dignity
ASEAN Summit at the Nippon Foundation