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Together with Medical Devices --In Order to Live Outside of Institutions, Symposium Report "How Did You Survive the Disaster and Power Outages?: Inviting People with Intractable Diseases / People with Ventilators Living at Home in Fukushima

GONDO Mayumi & NOZAKI Yasunobu (Eds.) March 31, 2012
Report Issued by Research Center for Ars Vivendi of Ritsumeikan University, Vol.18, 192p.
[Japanese] / [Korean]


¡GONDO Mayumi & NOZAKI Yasunobu (Eds.) March 31, 2012 Together with Medical Devices --In Order to Live Outside of Institutions, Symposium Report "How Did You Survive the Disaster and Power Outages?: Inviting People with Intractable Diseases / People with Ventilators Living at Home in Fukushima, Report Issued by Research Center for Ars Vivendi of Ritsumeikan University, Vol.18, 192p.¦

wTogether with Medical Devicesx

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¡Table of Contents

Prefacecc GONDO Mayumi / NOZAKI Yasunobu 3-6
I "Living at Home" Diagrams: Power Outage Preparations for Those Who Rely on Medical Devicescc Editorial Supervisor: KAWAGUCHI Yumiko@Illustrations: KATO Saki 9-15

II gHow Have You Survived the Disaster and Power Outages?
ŸProgram cc18-19
ŸOpening Remarkscc23
ŸFirst Half ("Unusable Emergency Preparations" + Q&A)cc25-40
ŸSecond Half ("Fukushima and the Disaster: Living at Home Support Network" + Q&A)cc41-74
ŸClosing Remarkscc75
ŸWrite Their Names in the Wind: What Comes Next for the Panelists from FukushimaccOKAMOTO Koumei@76-93
ŸEyes That Call from Here: Measures Taken up to the Start of the Symposium and to Be Taken Going forward ccOKAMOTO Koumei/NISHIDA Miki/SAKAI Miwa@94-112
ŸExamination of the Current State of Affairs concerning People with Severe Disabilities Who Require Medical Devices ? Towards Local ConnectionsccNISHIDA Miki@113-139

III@Papers/Research Materials concerning the Effects of Power Outages
ŸScheduled Power Outages and People/Children with Disabilies Who Require Medical Care: Looking at Cases of the Great East Japan EarthquakeccSATO Hiroko@142-160
ŸRegarding the Results of a Study on Power Outage Preparations for Users of Ventilators (Tokyo Metropolis)ccSAKAI Miwa@161-174
Research Materials
ŸReports by Patientsf Associations and Related Information concerning Power Outages in Fukushima and Miyagi Prefecture Caused by the Great East Japan Earthquakecc175-186
ŸAfterwardccTATEIWA Shin'ya@187-188
ŸList of authors

¡From the Editors:

An earthquake, tsunami, and nuclear power accident all befell the Tohoku region. How have patients and people with disabilities survived this disaster? In particular, what were the effects of scheduled blackouts on patients living at home who normally rely on electrically powered devices to survive? Very little reporting has been done on these sorts of issues. Half a year after the disaster occurred patients in Kyoto worked together with patients from Fukushima and Chiba to hold a symposium. This is in part a report of what was discussed at this event. It also includes a lot of other content, such as an illustrated guide to providing care during power outages, essays about what has happened to participants since the symposium ended, and papers examining the current situation of patients who use medical devices. We hope readers will use this text as a starting off point in beginning to understand the current situation.



At the gHow did you survive the disaster and power outages?h symposium held on September 18th, 2011, I worked at the reception desk. I had been planning to listen to the presentations being given at the symposium after my reception duties were finished, but the line of participants kept growing and as our materials started to run out I had to keep running to the photocopier to replenish our supply. What I saw on my copy runs was a large number of people standing outside the entrance listening to the presentations being given inside. I was genuinely surprised that so many people were interested in this symposium. I think what everyone was looking for was a place to share their thoughts and concerns about pressing issues such as gpower source preparationh, gindependent livingh, gnuclear power plant problemsh, gensuring safetyh and gshortages of caregiversh.

I was scheduled to begin working as a registered helper one month after this symposium was held, and by chance I became engaged in providing care for an ALS patient. I was nervous about whether I would be able to provide suitable care for my client while I was getting used to my new role. During my training I worried about whether I would really be able to take care of the first ALS patient I met, but once I became able to perform my caregiver duties smoothly I then started to worry about whether I would be able to respond calmly if there were a power outage. When phlegm builds up there is a subtle change in the sound of the ventilator. Would I be able to sense this myself when using an Ambu bag? While in my training I had been taught who to contact, what to be careful of, and what steps to take when providing care using an Ambu bag, I did not have a concrete understanding of the various problems that might arise. I would be holding a personfs life in my hands. These concerns were weighing on me when I was asked to take part in editing these materials. Along with serving as an editor I was also asked to provide a caregiverfs perspective at editorial meetings. Reading the manuscripts clearly communicated to me the severity of the circumstances created by the disaster, and as a caregiver the thought of being put in such circumstances myself made me shudder. I received guidance from Yumiko Kawaguchi in the production of gLiving at homeh, a diagram on power outage preparations for people living with the assistance of medical devices, and Saki Katou produced light-hearted, appealing illustrations for use in this project. I was very grateful to receive explanations using these drawings. When it comes to things I myself cannot deal with calmly and have difficulty understanding through written explanations, I think it is very reassuring to be able to hold this diagram in my hands and see images of how I should behave depicted in its illustrations.

As for what was discussed at the symposium, more than anything it was an opportunity to get hints on gpeacetime preparationh for experiencing power outages. I also share the desire expressed by Hiroko Koizumi for this symposium to provide an opportunity for people to make connections and confirm the necessity of networks. While only for a short time, I too went to Fukushima to provide care. Many times I heard how immediately following the disaster local networks functioned better than waiting for help from the government. How can we build relationships involving face-to-face interactions with those around us? Here it is necessary for not only people receiving care but also for caregivers to expand their networks within the community. You need there to be someone who can go in your stead if you are not able to reach the place where you provide care. You must create an environment in which you will be able to go and provide care yourself. Do you have someone who can take care of your children? This is why the more people you have close to you the better. Everyone shares compassion for each other, and little by little caregiving roles can be divided up. By widening the circle everyone can support each other and everyone can overcome difficulties together.

Mayumi Gondo


When the Great Hanshin (Kobe) earthquake occurred seventeen years ago I was in the Higashinada ward of Kobe City, an area that was severely damaged in that disaster. Afterwards I took part in rescue and recovery efforts initiated by people with disabilities affected by the earthquake. The lesson this taught me was very simple: in order to make sure that they do not feel excessive anxiety during a natural disaster because of their disability, people with disabilities must be able to conduct their ordinary daily lives without being discriminated against.

On March 11th 2011 I was at home working on my computer. An emergency news bulletin was suddenly broadcast: gMassive earthquake in the Tohoku regionh. Based on my own experience of the Great Hanshin earthquake I intuitively sensed that terrible things would happen.

What made this earthquake worse was the ensuing tsunami and accident at a nuclear power plant in Fukushima. This gtriple disasterh also mercilessly devastated people with disabilities. The resulting situation went far beyond the gterrible thingsh I had anticipated.

To begin with, the fact that the disaster occurred in the Tohoku region did not only mean the damage was spread over a wide area. This is a region that has been forced to make sacrifices as a result of the westernization/modernization of Japan begun in the Meiji period (Yamauchi [2011]). It is often said that people in the Tohoku region have a stoic, resolute character. On one level this may be true. But it must not be forgotten that what forced the Tohoku region to suffer, endure and sacrifice was none other than the gcenterh of Japan.

It also cannot be denied that the nuclear power plant accident will greatly delay this regionfs recovery. There will be urgent demands for the immediate decommissioning of all nuclear facilities and a transition to clean energy, and this is indeed the correct path. So to what extent are the people addressed in this report, people who need a lot of electricity, being considered? There is little recognition of the fact that being able to enjoy an ginconvenienth life without access to electricity is the exclusive prerogative of people who do not need a lot of electricity to survive. When the idea that reduced power consumption is considerate of nature is given too much prominence, there is the potential for it to grow into assertions of which people who require electricity to survive must be wary. In addition to the ALS patients who are the main focus of this report, there are also others such as people with weak eyesight and dialysis patients who cannot live their lives without the ability to use electricity. Shouldnft our goal be a clean energy society in which these people too can live?

Through this report I hope that, to begin with, readers will learn the gsurvival techniquesh of patients and people with disabilities who lived through planned power outages in a disaster area threatened by a nuclear accident. Let me once again state the lesson of the Great Hanshin earthquake: a society in which patients and people with disabilities can conduct their daily lives is a society resilient against natural disasters.

Yasunobu Nozaki

UP: July 9, 2012@REV: July 31, 2012/September 27, 2012/October 9, 2012/October 11, 2012/April 15, 2013/May 28, 2015
Translated by Robert Chapeskie
Proofread by KATAOKA Minoru
žThe Great East Japan Earthquake žNanbyo: ALS / MND etc. 2012 žVentilator žDisability Studies
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