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!