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The Great East Japan Earthquake and Persons with Disabilities Affected by the Earthquake
- Why Is the Mortality Rate so High? -
Interim Report on JDF Support Activities and Proposals

Katsunori Fujii
Chairperson of the Executive Board, Japan Disability Forum

Introduction

The Great East Japan Earthquake has left extensive and deep scars in the area of disabilities. Although it has been more than one year and seven months since the earthquake hit, the damage inflicted on persons with disabilities is still unknown. The Japan Disability Forum (JDF) has requested that the government (mainly the Ministry of Health, Labour, and Welfare and Cabinet Office) conduct a detailed examination of three issues - (1) the number of persons with disabilities who died in the disaster, (2) the living conditions of persons with disabilities from immediately after the earthquake until now, and (3) the government's existing disaster prevention policies in terms of disabilities. However, the government has yet to provide an official response.

Even so, various local governments, news organizations, and non-governmental organizations (NGOs) have conducted independent surveys. In this report, which is based on the results of these surveys, I outline (1) the high mortality rate of persons with disabilities and the reason for it and (2) issues related to earthquake-related policies in terms of disabilities. Regarding the support activities conducted by JDF from immediately after the disaster until now, I only introduce a few key issues in this report and further details can be found in other reports.

1. High mortality rate of persons with disabilities

On September 11, 2011, six months after the Great East Japan Earthquake hit, the Japan Broadcasting Corporation (NHK) ran a program titled “Torinokosareru Shogaisha (Persons with Disabilities Left Behind)” on its Educational Television channel. At the beginning of the program, “a figure for the number of persons with disabilities who were victims of the earthquake” (the number of dead, which does not include the number of missing) is given. The figure is based on a fact-finding survey conducted by NHK of major local municipalities hit by the disaster. Responses were received from twenty-seven municipalities along the coast of the three prefectures that sustained major damage (Iwate, Miyagi, and Fukushima) (the survey was sent to thirty municipalities that had ten or more fatalities; see Item 1). According to this survey, the mortality rate for the overall population was 1.03%. On the other hand, the mortality rate for persons with disabilities was 2.06%. Here, “persons with disabilities” is defined as persons who have been issued a shintaishogaishatecho (certificate of persons with physical disabilities), ryoikutecho (care and education certificate for persons with intellectual disabilities) or seishinhokenfukushitecho (mental health and welfare certificate for persons with psychosocial disabilities). This does not include persons with disabilities who did not have one of these (in particular, many persons with psychosocial disabilities do not have one); in addition most people with disabilities due to intractable diseases, developmental disabilities (due to autism, asperger syndrome, learning disability, ADHD, etc.), and higher brain dysfunction are not issued one. Therefore, it is important to keep in mind that figures given here are only some of the total of “the number of persons with disabilities who were victims of the earthquake”. NHK made subsequent revisions to the figure for a related program aired on March 11, 2012, but the overall trend was unchanged.

On March 29, 2012, Miyagi Prefecture released Higashi Nihon Daishinsai Ni Tomonau Higaijokyo Nado Ni Tsuite (Damage from the Great East Japan Earthquake), the first government survey (the figures in the survey are as of February 28, 2012). According to this report, the mortality rate due to the earthquake in coastal areas of Miyagi was 0.8% for the general population but 3.5% for people with a certificate for persons with disabilities. In both surveys, the mortality rate for people with a certificate for persons with disabilities was higher than that for the general population - 2 times greater in the NHK survey and 4.3 times greater in the Miyagi survey. The difference in the figures is because the NHK survey was the average for the three prefectures hit by the disaster, while the Miyagi survey was limited to Miyagi Prefecture. In other words, the earthquake, particularly the resulting tsunami, caused more damage to persons with disabilities in coastal areas of Miyagi than in other areas. Considering that many of the fatalities were concentrated in the coastal areas of Miyagi, the above trend was not limited to persons with disabilities.

The most recent survey is one by Kahoku Shimpo Publishing (dated September 24, 2012), and although the figures are slightly different for various reasons, including differences in the calculation method, it is clear that the mortality rate for persons with disabilities is substantially greater than that for the general population. The details of the survey results clearly reveal that there are major differences depending on (1) the municipality (the mortality rate for persons with disabilities was at the 15% level for Onagawa-cho, Miyagi) and (2) type of disability (the mortality rate was highest for persons with hearing impairments).

When analyzing and considering these trends, it is probably important to compare the figures with those for the elderly and the impact other major disasters, such as the Great Hanshin-Awaji Earthquake in 1995, had on persons with disabilities.

2. Why is the mortality rate so high?

The most important issue here is why is the mortality rate for persons with disabilities so high. In order to come to a highly reliable conclusion, it is necessary to wait for these figures to be verified using reliable data, but at the current time, at least two points can probably be noted.

First, existing earthquake-related policies are not effective from the perspective of people with disabilities. Tectonic movements, earthquakes, and the resulting tsunamis are unavoidable natural phenomenon, and damage due to these are referred to as “natural disasters.” These natural disasters impact all citizens equally. However, the extremely high mortality rate for persons with disabilities cannot be discussed solely in terms of a natural disaster. The issue should not be brushed aside saying that the Great East Japan Earthquake was greater than expected and this was unavoidable. We must not forget that “because of disabilities” underlies these figures. This means that persons with disabilities are disproportionally impacted by natural disasters because of their disability. To what extent were the various types of disaster prevention measures and earthquake-related measures for the areas hit by the earthquake developed with persons with disabilities (including the elderly) in mind? Even if the measures were developed with persons with disabilities in mind, considering the outcome, it is probably reasonable to view it as if the plans had been developed without them in mind.

In contrast to natural disasters, there are “man-made disasters”, and most of the impact “because of disability” likely falls in the man-made disaster category. If one were to express it using a mathematical formula, “mortality rate for persons with disabilities - mortality rate for the general population = x,” and one can readily assume that x is mostly due to man-made factors. Although the central government has not released the results of any official studies, the results of various surveys clearly show that the mortality rate for persons with disabilities is high. To what extent are the central and local governments clearly aware that much of the impact was due to man-made factors? Probably the more they are aware of this, the more reliable and effective future verification work and earthquake-related policies developed to respond to the next earthquake will be. For us, many of our brothers and sisters lost their lives because of this extremely regrettable situation, and we want to thoroughly clarify man-made disaster aspects so that our brothers and sisters did not die in vain.

The second point is that there is a correlation between the level of support provided to persons with disabilities during non-emergency times and the mortality rate (impact of the disaster). Many of the disaster-hit areas have traditionally lacked sufficient social resources for persons with disabilities (work places, housing, human support system such as advising). It can be assumed that this is related to the extensive harm caused to persons with disabilities. This is also becoming clearer during recovery and reconstruction. The general trend is that the more generously social resources are allocated to persons with disabilities, the more progress there is in the recovery and reconstruction in the field of disabilities.

The disproportional negative impact of the disaster on persons with disabilities is not limited to the mortality rate but extends to all stages of the post-earthquake recovery, including life without main utilities (the most dangerous time was the one week after the earthquake) and life in shelters and emergency temporary housing.

3. The ineffective list of people requiring aid during a disaster and the Act on the Protection of Personal Information, a hindrance

Let's take a slightly deeper look at existing disaster prevention measures and earthquake-related measures. We will ultimately see that the Great East Japan Earthquake exposed deficiencies in earthquake-related policies and aid for persons with disabilities. The following two issues are typical of this.

First, there are the Saigaijiyogosha No Hinanshien Gaidorain (Guidelines on Evacuation Support for People Requiring Aid During a Disaster, which set forth the so-called list of people requiring aid during a disaster; March 30, 2005) created by the national government's Central Disaster Management Council. Testimony from people in the various disaster-hit areas confirms that the list was almost completely ineffective. Some of the basic problems were (1) constraints at the time of a major disaster, (2) powerlessness since the elderly were included in supporters (including local welfare commissioners (minsei-iin community volunteers), etc.), and (3) few persons with disabilities registering. For example, in Tohoku, including the coastal areas of Iwate, there is an old saying “tsunami tendenko.” The meaning of the saying is that when a tsunami hits, people should flee without taking care of others. This is a harsh saying for persons with disabilities for whom it is difficult to flee on their own. At any rate, there is a need to carefully examine the list of people requiring aid during a disaster considering large-scale earthquakes.

The second point is related to the Act on the Protection of Personal Information, which came into effect on May 30, 2003. The Act not only was an obstacle to the initial check of people's safety but also has been an obstacle to support up to now; ultimately it was also a major constraint on the support activities of NPOs. There are 128 municipalities in the three prefectures hit by the disaster, and as of October 2012, only two municipalities, Minamisoma-shi (Fukushima) and Rikuzentakata-shi (Miyagi) have provided JDF with information on people with a certificate for persons with disabilities. These two cities made use of the Act on Access to Information Held by Administrative Organs, which came into effect on May 14, 1999 and takes precedence over the Act on the Protection of Personal Information. This Act on Access to Information Held by Administrative Organs gives “information which is found necessary to be disclosed in order to protect a person's life, health, livelihood, or property (Article 5, Paragraph (i), Item (b) as an exception to the non-disclosure stipulation, and Minamisoma-shi and Rikuzentakata-shi made extensive use of this. JDF's work on a study of actual conditions using the disclosed information is covered in another report, but at least as of now, the work has been very successful, and there has been no damage or negative repercussions.

Serious consideration, or course, must be given to protecting the privacy of individuals no matter what the situation. However, if a person's life is in danger, his living standard has fallen substantially, or it can easily be envisioned that this will occur, it is probably necessary to make a decision that these considerations are more important than the need to protect a person's privacy. Under current laws, the Act on Access to Information Held by Administrative Organs should take precedence over the Act on the Protection of Personal Information. Generally speaking, there is no argument that when balancing people's lives against protection of privacy, the former takes precedent. It is hard to understand why people would brandish the Act on the Protection of Personal Information during extreme conditions such as the Great East Japan Earthquake. One can see the unique play-it-safe stance of governments (local governments in this case) - that is, they think that it will ultimately be safer to give priority to Act on the Protection of Personal Information. This issue has begun to be examined, mainly in legal circles, but there is a need for a deep look at various issues, including revising related laws.

The reason that JDF complied with requests from Minamisoma-shi and Rikuzentakata-shi to conduct the survey was that we could not ignore the suffering of our brothers and sisters. With this idea in mind, we were ready to actively participate, including bearing the required financial burden and calling for support for the survey throughout Japan.

4. Interim summary of JDF's support activities

JDF's support activities related to the Great East Japan Earthquake and persons with disabilities are discussed in detail in another section of this report. Here, I would like to once again summarize the distinctive characteristics of JDF's support activities. At the same time, I would like to tie what has been accomplished up to now to the development of a long-term support system.

The most important aspect of the initial stage of support activities was creating a foundation for future support. In other words, we put all our energy into how to establish a JDF support center in the three main prefectures that were hit by the disaster. Although the centers were set up at different times, JDF opened its own support centers in the three prefectures hit by the disaster as listed below.

  • Miyagi Support Center (opened March 30, 2011; its activities were mainly taken over by local organizations at the end of December 2011.)
  • Support Center Fukushima for Persons with Disabilities in Devastated Area (opened April 6, 2011, and continues to operate today.)
  • Iwate Support Center (opened September 22, 2011, and continues to operate today.)

Mainly through these support centers, JDF launched organized and systematic support activities working with related organizations and coordinating with local governments. The support activities consisted primarily of (1) conducting initial checks of people's safety, (2) providing support for life at emergency shelters (including transporting necessary supplies), (3) providing help for reopening support offices for persons with disabilities (ex. facilities/workshops for persons with disabilities) (by cleaning, repairs, etc.), (4) supporting moves from emergency shelters to temporary housing, etc., and inspecting repairs, (5) providing transportation from temporary housing, etc. (for hospital visits, shopping, etc.). JDF also conducted a complete survey of all people with a certificate for persons with disabilities in Minamisoma-shi and Rikuzentakata-shi. Up to now, the Miyagi Center has provided support to a total of about 5,000 people; the Fukushima Center, about 4,000 people; and the Iwate Center, about 1,000 people.

The Headquarters for Comprehensive Support of Persons with Disabilities Affected by the Great East Japan Earthquake, which was established under the JDF executive board immediately after the disaster, has been responsible for serving as the control center for efforts related to the Great East Japan Earthquake within JDF, and we would like the body to continue those functions. As for funds, JDF covers expenses mainly with contributions from member organizations but also donations for activities from various parties, including funding organizations, corporations, and individuals, and as support has taken on a more long-term flavor, we will continue to solicit donations.

JDF has held activity reporting session related to its support activities twice (the first was on July 13, 2011, and the second was on March 1, 2012; both were held at the Diet Members' Building). We would like to continue to hold these in the future at regular intervals . We would also like to create written and video records of JDF support activities and policy proposals on the Great East Japan Earthquake and persons with disabilities.

5. Current issues and proposals

Although various problems and issues related to the Great East Japan Earthquake and persons with disabilities have come to light, I will discuss only the urgent ones here.

(1) Basic issues and proposals

For the time being, the issue is reconstruction policies related to the Great East Japan Earthquake, but at the same time, it is also probably important to consider lessons from the Great East Japan Earthquake and other envisioned natural disasters, such as the major earthquake in the Tonankai area. In terms of major earthquakes and the issue of disabilities, it is probably important that at least the following points are examined mainly by the central and local governments and in collaboration with the private sector. That should be started immediately.

A. Getting the central government to conduct an examination of the Great East Japan Earthquake and persons with disabilities

  • Precise number of dead and missing
  • Actual living conditions after the earthquake (lack of major utilities, emergency shelters, temporary housing, evacuation from the prefecture, etc.)
  • Effectiveness of existing earthquake-related policies (list of people requiring aid during a disaster, Act on the Protection of Personal Information, etc.)

B. Getting persons with disabilities to actually participate in the reconstruction policies of the central and local governments

  • Create a mechanism for handling disability related issues in the Reconstruction Agency, which was newly established by the government
  • Have persons with disabilities get involved with planning reconstruction policies at the national, prefecture, and municipal levels

(2) Current issues and proposals

A. Providing support for the lives of persons with disabilities affected by the disaster

  • Ensure greater comfort at temporary housing (including privately-rented temporary housing)
  • Transportation support (from temporary housing for hospital visits, shopping, visits to friends, etc.)
  • Employment-related support (finding jobs, getting work at support facilities/workshops for persons with disabilities, etc.)
  • Support for the self-employed (support in various cases such as acupuncture, moxibustion, and message businesses that were forced to close)

B. Responding to the problem of compensation from Tokyo Electric Power Company related to the nuclear incident at the Fukushima Daiichi Nuclear Power Plant (eliminate disadvantages faced by persons with disabilities)

6. Conclusion

There are three points that I would like to stress in conclusion. The first point is regarding the support activities that JDF has undertaken up until now; even though they were not elegant, we probably communicated our thoughts and intentions to persons with disabilities in the disaster area. Although to experts in the field of support activities, it may seem that we do things as we like, JDF has consistently undertaken activities from a perspective of “wanting to share the struggles of persons with disabilities affected by the disaster” and “being able to understand their pain precisely because we are JDF.” Our efforts may not have fully reached throughout the extensive area hit by the disaster because of limited funds and man power, but I believe that JDF has been doing its best to respond to calls for help and problems that it has found. Of course, there are many points that JDF needs to reflect on, but if another disaster were to hit, we would want to quickly launch support activities as quickly as possible from the basic perspective of continuing to share the struggles of our brothers and sisters.

Second, the high mortality rate of persons with disabilities is a point of concern, and it is important to quickly move forward with a detailed examination of the issue and clarify the problem. Even from the perspective of preparing for the major earthquake in the Tonankai area, which people whisper about, this is an issue that should be given priority to in Japan, which continually faces the threat of natural disasters such as typhoons, floods, and heavy snow. We would like to promptly form a team to examine the death of persons with disabilities due to the Great East Japan Earthquake, and this team should include representatives of the central government, local governments, and organizations involved with persons with disabilities.

The third point is about the JDF's support activities, and it is important to be aware that the real task starts now. It has been one year and seven months since the earthquake hit, but conditions remain harsh in the area hit by the disaster. One can hardly think that the lives of persons with disabilities are getting any easier. At the present time, when activities are shifting from recovery to reconstruction, a different form of support activity will be required. Particularly for areas such as Fukushima, it is necessary to look at the basic problems from a long-term perspective. Even for the coastal areas of Iwate and Miyagi that were heavily hit, there is a fundamental need for the same type of long-term support. As the number of stories carried by the mass media declines and the number of volunteers dramatically falls, future support will become more important, the question will become what sense of collaboration is there in the field of disabilities, and JDF's underlying strength will probably be tested.