The Great East Japan Earthquake and Disabled Persons
-Background to Their High Mortality Rate -

Katsunori Fujii
Chair, Executive Board, JDF

Introduction

　The Great East Japan Earthquake (hereinafter, “the Earthquake”) has left a deep and extensive scar in the disability sector, amongst other domains. More than one year and seven months have passed since the Earthquake, yet an accurate number of casualties among disabled persons remains unknown. The Japan Disability Forum (JDF) has been requesting the national government, through the Ministry of Health, Labor and Welfare and the Cabinet Office, to conduct thorough research on 1) the number of disabled persons who fell victim, 2) the living conditions of disabled persons after the disaster, and 3) a review of existing disaster reduction policies from the perspective of those with disabilities. However, no formal reply has been received yet.

In the meantime, the local government, media and NGOs have conducted their own studies. Based on their results, this report outlines 1) the high victim rate among disabled persons and its background, and 2) the controversial points among the counter disaster policies from the perspective of those with disabilities. As only the key points of the support activities provided by the JDF since the outbreak of the disaster are covered in this report, refer to related materials.

１．Remarkably high mortality rate among disabled persons

　On September 11, 2011, six months after the Earthquake, NHK aired a TV program titled “Disabled Persons Left Behind”. At the beginning of the program, they reported the number of disabled people who fell victim to the Earthquake (number of fatalities; excluding missing persons). This was the outcome of research conducted by NHK in the major disaster-stricken region: 27 municipalities responded to its survey out of the 30 contacted where more than 10 people were killed. According to the study, the mortality rate against the total population was 1.03%, whereas that of disabled persons was 2.06%. “Disabled persons” is defined here as those with physical or mental disabilities, and those with mental illnesses, who are officially registered as such by the government. However, not all those with mental disabilities, in particular, are official registered, nor are those who have disabilities caused by intractable diseases, developmental disabilities, and higher-brain dysfunctions. Therefore, it should be noted that the figures mentioned herein only represent a certain proportion of disabled people who fell victim to the Earthquake. In a subsequent related program aired on March 11, 2012, NHK made partial modifications to the figures but there were no fundamental changes.

On March 29, 2012, the first administrative report of its kind was released by the Miyagi Prefectural authorities under the title “Damage from the Great East Japan Earthquake” (report as of February 28, 2012). The report states that the mortality rate against the total population of the coastal area of Miyagi was 0.8% while that of registered disabled persons was 3.5%. In comparing the mortality rate for disabled persons and the mortality rate against the total population indicates, the former is twice as high as that of the latter according to the NHK survey and 4.3 times higher in Miyagi Prefecture’s statistics. The differences between the figures are due to the scope of the surveys. While NHK used figures based on the average of three disaster-stricken prefectures, the Miyagi Prefectural authorities used figures for Miyagi Prefecture only. In other words, the results indicate that disabled persons living in the coastal area of Miyagi Prefecture were more severely affected by the Earthquake and tsunami, in particular. Yet, this tendency was not limited to disabled victims as most casualties were concentrated on the coastal area of Miyagi Prefecture.

The latest survey has been made available by Kahoku Shimpo (as of September 24, 2012) (See Appendix 1). Although there have been minor changes in figures due to differences in calculation method, etc. all survey results clearly show that the mortality rate for disabled persons was much higher than that against the total population. A more detailed examination of the report reveals large differences between 1) municipalities (e.g. the mortality rate among disabled persons in Onagawa City, Miyagi, was around 15%) and 2) the types of disabilities (those with hearing disabilities had the highest fatality rate).

In analyzing and discussing these tendencies, it is necessary to compare the results with the ratio of aged victims as well as the ratio of disabled persons who fell victim to other massive disasters such as the Great Hanshin-Awaji Earthquake.

２．Background to the high mortality rate

　The most important question for us here is this: “Why was the mortality rate for disabled persons so high?” Although further analyses based on reliable data are required in order to make more accurate conclusions, at least two observations can be made at this point.
First, the existing counter disaster policy is ineffective from the perspective of the disabled. The crustal deformation, earthquake, and tsunami were unavoidable natural phenomena, or so-called “force majeure.” This disaster targeted all citizens regardless of who they were. However, the abnormally high fatality rate among disabled persons tells more than just that this was a natural disaster. Indeed, I do not want people to conclude that “it could not have been avoided as it was a massive disaster that no one could have predicted.” There is apparently a factor related to disability, and therefore this point has to be remembered. What I mean by “a factor related to disability” here is actually a disadvantage due to disability. It is doubtful how much consideration had been given to the needs of disabled persons and the elderly in various counter disaster measures and policies in the region affected by the Earthquake. Even if there had been such consideration, we should regard it as almost non-existent given the actual outcome.

Although there is an expression “man-made disaster” as opposed to a “natural disaster,” I suspect that most of the factors related to disability should be categorized as man-made disasters. In a formula, it could be described thus:
(Mortality rate of disable persons) ? (Mortality rate among the total population) = X.
We can easily predict that this “X” contains many factors related with a man-made disaster. Although official study results by a national government are not available yet, it is obvious from other study results that the mortality rate among disabled persons is much higher. I believe the key is how clearly the national government and municipalities recognize the fact that there were elements of a man-made disaster in the high mortality rate among disabled persons. The more clearly they recognize this, the more trustworthy and effective will be their verification and counter-disaster policies in case of major earthquakes in the future. From my standpoint, it is an ever-lasting regret that countless fellow citizens with disabilities lost their lives in this disaster. We want the elements of the “man-made disaster” to be fully assessed in order to make sure that these fellow friends did not die in vain.

Second, the standard of the support policy for disabled persons in peacetime may be correlated to their death rate (the extent of damage). Most of the disaster stricken areas had scarce social resources for disabled persons (workplace, housing, personal support system including consultation services, etc.). This fact seems to be related with the extent of the damage. And this is more apparent in the case of recovery and reconstruction efforts. As a general tendency, the more social resources are available, the more recovery and reconstruction efforts related to the disability sector have progressed.

It should also be noted that the concentrated and accumulated impact of the disaster on disabled persons is not only seen in the death rate but also in the various stages of their life after the disaster, such as living under disrupted lifelines (the first one week immediately after the disaster was particularly crucial), and their stays at the evacuation centers and temporary housing.

３．The Ineffective “List of People Who Need Support in Emergencies,” and hindrance of the “Private Information Protection Law”

　Now, I would like to further discuss the existing counter disaster measures and policies. Judging from conclusions, the defects within “disabled persons and counter disaster policy” became obvious. The following are two major issues that have emerged.

One is regarding the “Guidelines on Evacuation Support for People Who Need Assistance in Case of Disaster” (so-called “List of People Who Need Support in Emergencies”) issued on March 30, 2005, by the Central Disaster Prevention Council. However, no municipalities reported to us its efficacy. The followings are the fundamental problems pointed out: 1) possible limitations during a massive disaster, 2) ineffectiveness due to aged people being expected to act as support providers, such as social workers, etc., and 3) the small number of the registered disabled people. For example, there is an old expression, “tsunami tendenko,” which has been known around the coastal areas of Iwate Prefecture. The saying basically means that when you see a tsunami, you should just run without worrying about others. This is a cruel saying for those disabled persons who have difficulty in escaping without the help of others. In any case, more detailed studies are required with regard to the list of people who need support in emergencies, taking into account the scenario of massive disasters.

The other issue concerns the Private Information Protection Law (enforced on May 30, 2003). In reality, this acted as a barrier during safety confirmation at the earliest stage of the disaster and even as hindrance to the current support activities, consequently weakening aid from NGOs. Among 128 municipalities in the three disaster-affected prefectures, only two cities, Minamisoma City in Fukushima Prefecture and Rikuzentakata City in Iwate Prefecture, have disclosed the list of disabled persons who were officially registered by the government to the JDF as of October 2012.

These cities used the Act on Access to Information Held by Administrative Organs (enforced on May 14, 1999) as a law that shall take precedence over the Private Information Protection Law. As a special exemption of the provisions on non-disclosure information, this Act contains the following provision: “Information that is found necessary to be disclosed in order to protect a person's life, health, livelihood, or property.” (Article 5 (i) (b) of the Act) The two cities utilized this provision to the full extent. Although other papers should be referred to with regard to the details of JDF’s fact-finding studies based on information disclosure, at least at this stage there have been no adverse effects or negative incidents, whereas there have been significant outcomes as a result of the studies.

It is needless to say that in normal circumstances, the privacy of individual persons should be respected. However, a decision surpassing the “protection of privacy” is required in cases where lives are threatened, living standards have declined to an extreme, or fear of these can be easily predicted. In the case of an existing law, the Act on Access to Information Held by Administrative Organs should take precedence over the Private Information Protection Law. There is no room for any argument against when someone’s life is weighted against the protection of privacy, the former has a priority. I simply cannot understand why the Private Information Protection Law should become a hindrance in the extreme situation of a major disaster. This has to do with the so-called ostrich attitude to policy which is typical of a bureaucracy (municipal governments in this case.) In other words, they tend to think that it is safer to stick to the Private Information Protection Law for the sake of their future. Although this point is being investigated, mainly in legal circles, it is hoped that serious consideration will be given to it-including a review of related laws.

The reason why the JDF responded to the request by Minamisoma City and Rikuzentakata City to conduct a survey was simply because we could not ignore our fellow friends in trouble. Based on this view, we decided to take on necessary financial burden and proactively moved to take actions while calling for support for a survey nationwide.

４．Interim report on support activities by the JDF

　The JDF’s support activities from a standpoint of the “The Great East Japan Earthquake and Disabled Persons” are described in details in the preceding articles in this report. Next, I would like to briefly review the characteristics of our support activities in this paper. Our aim is to reflect our past achievements on the development of a long-term support system in the future.

Our focus at the earliest stage of our support activities was securing a foothold for our activities. In other words, we concentrated our efforts in setting up the JDF’s support centers in the three prefectures that sustained major damage due to the Earthquake. Although there were time lags in the establishment timing, we set up the JDF’s own support centers in the three disaster stricken prefectures as follows:

Miyagi Support Center (Established on March 30, 2011; its activities were taken over by the local organization at the end of 2011)
Support Center Fukushima for Persons with Disabilities in Devastated Area (Established on April 6, 2011; still active) Iwate Support Center (Established on September 22, 2011; still active)

The JDF has been providing its support mainly through Support Centers in an integrated and systematic manner, collaborating with some related organizations and coordinating with municipalities. Their major activities are: 1) safety confirmation at the earliest stage, 2) support provision at the evacuation center (including delivery of necessary goods), 3) reopening of the workshops for disabled persons (cleaning and repair related), 4) move from evacuation centers to temporary housing and checking the places to be restored, and 5) transportation support from temporary housing (to hospitals and stores). In addition, the JDF conducted a complete survey on registered disabled persons in Minamisoma City and Rikuzentakata City, as mentioned earlier in this report. The number of total support personnel was approximately 5,000 at the Miyagi Center, approximately 4,000 at the Fukushima Center, and approximately 1,000 at the Iwate Center.

“JDF Headquarters for the Comprehensive Support of Persons with Disabilities Affected by the Great East Japan Earthquake,” which was established under the JDF Executive Board immediately after the Earthquake, has been playing a role as the JDF’s “control tower” for activities related to the Earthquake. We plan to maintain this function at the Headquarters.

On the financial front, our activities have been funded largely by contributions from the JDF’s member organizations, in addition to donations for support activities from grant-making organizations, corporations, individuals, etc. However, as long-term support is increasingly necessary, we will continue to solicit further donations and contributions.

We have conducted two debriefing sessions on the JDF’s support activities thus far. (The first session was held on July 13, 2011, and the second one on March 1, 2012, both at the Diet Members’ Office Building.) We would like to continue to hold these sessions at regular intervals in the future. In addition, under the theme of “The Great East Japan Earthquake and Disabled Persons,” we will further promote the JDF’s support activities and proposals on policies while creating archives and videos featuring these activities.

５．Current challenges and proposals

Although a number of issues and challenges have been brought to light with regard to the Great East Japan Earthquake and disabled persons, I would like to discuss some of the most pressing issues to be addressed.

1) Basic challenges and proposals

For the time being, the major focus will be on the recovery policy concerning the Great East Japan Earthquake. In parallel to this, however, we should apply the lessons we learned from the Great East Japan Earthquake to our preparations for future natural disasters including those for a possible Tonankai Earthquake in the future. From the perspective of “massive disaster and disability,” at least research should be conducted and consideration should be given to the following points by the national and local governments, together with the private sector. These should be started imminently.

A. Research by the government on “the Great East Japan Earthquake and disabled persons”

• Exact figures for the dead and the missing.
• Living conditions since the disaster (life under disrupted lifelines, at evacuation centers and temporary housing, evacuation to outside the prefecture).
• Effectiveness of existing policies. (List of People Who Need Support in Emergencies and the Private Information Protection Law.)

B. Substantial participation of disabled persons in the recovery policy at both national and local levels.

• Inclusion of disability issues by the newly established Reconstruction Agency.
• Participation of disabled persons in the recovery plans at national, prefectural, and local levels.

2) Current challenges and proposals

A. Support for disabled persons who fell victim to the Earthquake

• Improvement of the comfort level of temporary housing (including “minashi-kasetsu,” housing rented by the victims but paid for by the government).
• Transportation support (from temporary housing to hospitals, stores, other people’s houses, etc.)
• Employment and work support (securing workplaces and jobs at private companies, welfare workshops, etc.)
• Self-employment support (providing support during cessation from work for those who work in acupuncture, moxibustion, massage, and the like).

B. Dealing with the Tokyo Electric Power Company (TEPCO) compensation issue related to the accident at the Fukushima Daiichi Nuclear Power Plant (resolving the disadvantageous situations of disabled persons)

６．Conclusions

　In concluding this paper, I would like to emphasize three points. The first point concerns the JDF’s support activities to date. Although our activities were perhaps not as smooth as we wished, I believe that our passion and intentions reached the hearts of disabled persons in disaster stricken areas. From the eyes of support professionals, it may have seemed that we provided support in our own way. However, we were at least consistent in our perspectives of “Sharing the pain of disabled persons in disaster affected regions” and “JDF’s ability to understanding the hardships of persons with disabilities.” Due to limited funds and personnel, our support may not have reached the entire area of the enormous disaster stricken region. Yet, we tried our best to go around and provide help when we received SOS signals from disabled persons or when we noticed the need for assistance. Needless to say, we have a lot to learn from this experience. In the case of another natural disaster, we would like to focus on providing support as early as possible while continuing to have our basic perspective of “sharing the pain of our fellow friends with disabilities.”

The second point is the high mortality rate among disabled persons, which really concerns me. I think it is essential to work on an exhaustive verification and clarification of this matter as soon as possible. Also, from the perspective of preparing for the presumably inevitable Tonankai Earthquake in the future, we should prioritize this as the Japanese archipelago is destined to face constant natural disasters such as typhoons, floods, heavy snowfalls, etc. It is hoped that a team to examine the situations of disabled persons who fell victim to the Great East Japan Earthquake will be established as soon as possible, as a joint effort among the national and local government, municipalities and preferably with representatives from disability-related organizations.

The third point concerns the JDF’s support activities in the future. It is necessary for us to be prepared by thinking that the main part is yet to come. Although one year and seven months have passed since the outbreak of the Earthquake, the actual situation in the disaster stricken areas remains tough. It is also hard to believe that the living conditions of disabled persons have improved. Amid a shift from the recovery phase to the reconstruction phase, our support activities will also have to be adjusted. A long-term perspective will be required for the case of Fukushima Prefecture, in particular, due to the fundamental issues being faced by the prefecture. Essentially, the coastal areas in Iwate and Miyagi Prefectures that sustained significant damage will also require long-term support similar to Fukushima Prefecture. As the media does not cover this topic as often as before and the number of volunteers has significantly declined, our future support activities will have real meaning. A sense of unity among all of us in the disability sector will be questioned and the JDF’s real strengths will also be tested.