Summary of the One Year Since Relief Activities for Persons with Disabilities Were Launched and Future Outlook
Shoji Nakanishi
Representative Relief Headquarters for Persons with Disabilities of Tohoku-Kanto Great Earthquake
1. Launch of the Relief Headquarters for Persons with Disabilities
The Great East Japan Earthquake, which caused unprecedented damage, consisted of an earthquake and tsunami, both natural disasters, followed by a nuclear accident, which truly forced persons with disabilities to confront a harsh situation for survival.
In order to promptly provide sustained necessary relief to persons with disabilities impacted by the Great East Japan Earthquake, we established the Relief Headquarters for Persons with Disabilities of Tohoku-Kanto Great Earthquake (Relief Headquarters) on March 17 in cooperation with the Japan National Assembly of Disabled Peoples' International, Japan Council on Independent Living Centers, Yumekaze Fund, and other organizations providing support on various fronts. Administrative offices, which were responsible for various operations, including handling requests for cooperation related to personnel, material, etc., serving as a support counseling counter, and accepting donations, were established in Tokyo and Osaka to make use of the experience with damage and support acquired through the Great Hanshin-Awaji Earthquake and the nation-wide network created so that persons with severe disabilities could live independent lives in their local community. Activities were launched to support persons with disabilities affected by the disaster in collaboration with independent living centers in the Tohoku region and other organizations.
Immediately after the disaster, it was impossible to contact the local communities hit by the disaster, but when communication lines were restored, we received one request after another for needed goods from these communities, and the Relief Headquarters' administrative offices were kept busy procuring and sending supplies for the first month after the disaster. At the same time, the administrative offices not only responded to inquiries regarding conditions that persons with disabilities faced in the disaster area and offers of donations and aid received from throughout Japan and the world but also disseminated information. Independent living centers and disability people's organizations throughout Japan held fundraising drives and provided financial support to the Relief Headquarters. This taught us the strength of the network of disability people's organizations. I would like to take this opportunity to express my appreciation for this.
2. Delivering relief supplies to persons with disabilities affected by the disaster
Supplies of medical goods and medicines to meet the unique needs of persons with disabilities were delivered to the area hit by the disaster, and these included large volumes of diapers (since toilets could not be used due to water stoppages), bath-wipe solution, portable toilets, batteries for respirators, and nutritional supplements (for people who have difficult to get nutrition orally). Furthermore, we delivered welfare vehicles, such as vans with lifts, as organizations were struggling to provide support to persons with disabilities affected by the disaster in the local area because many vehicles had been washed away by the tsunami. During that time, focal centers for persons with disabilities in the disaster area (Focal Centers) were established in each prefecture - first in Miyagi, then Fukushima, and finally Iwate - and support activities were started. It was extremely difficult, however, to find persons with disabilities, who needed support.
Life in emergency shelters that provide no privacy and are not barrier free is extremely harsh for various types of persons with hearing or visual impairments who have difficulty getting information, persons with intellectual or psychiatric disabilities who struggle with living with unknown persons, and persons with severe disabilities who have various special needs such as that for medical care and special beds since it is difficult for them to maintain their body and their temperature. Life in emergency shelters can also aggravate their disability and condition. Therefore, many continued to live in their own half-destroyed homes knowing the danger, making it even more difficult for the helping hand of the government and support organizations to reach them. Therefore, the work of focal centers in each prefecture began with posting flyers and using hearsay to search for persons with disabilities. In the disaster area, one hectic day followed another as staff were kept busy with various activities, including checking on the safety of people, collecting information, surveying the needs of people at each emergency shelter, and providing materials.
The following are the three activities that focal centers touted.
(1) Providing supplies to persons with disabilities affected by the disaster, aid, and personnel.
(2) Collecting, providing, and exchanging information related to persons with disabilities affected by the disaster.
(3) Conducting surveys of persons with disabilities affected by the disaster and providing advice to entities such as the government.
3. Accepting groups evacuating from Iwaki
During that time, the Relief Headquarters strove to create an evacuation support system for independent living centers in Fukushima. Because of the breakdown in the medical care system on various fronts, including materials and home nursing, and a shortage of gasoline on account of the nuclear accident, thirty-three people, including users of the Iwaki Independent Living Center, their families, and their personal assistants, determined that continuing to live in their homes any longer would be difficult and decided to evacuate en masse. To handle the group evacuation, we created a system to support the lives of persons with disabilities as evacuees, which included renting the fully-barrier-free accommodation (Toyama Sunrise, Shinjuku-ku, Tokyo) and dispatching personal assistants in collaboration with various entities including independent living centers in Tokyo.
During the time as evacuees, which lasted for one month from March 19, members of the Iwaki Independent Living Center worked to provide correct information and revitalize the local community, and these efforts included creating a handbook on avoiding the impact of radiation as a response to the nuclear accident and conducting evacuation training. They are now undertaking various activities, including developing a system to supply people using respirators at home with batteries during emergencies and are providing support to the 1,000 temporary housing units constructed in Chuodai in Iwaki-shi, where the administrative office is located.
< Handbook created by the Iwaki Independent Living Center >
4. From emergency support to individual support
There are now branch offices in both Miyagi (Minamisanriku and Ishinomaki) and Iwate (Miyako and Ofunato), and work in the disaster area has shifted to providing individual support. Even before the earthquake, along the coast of Miyagi and Iwate, there was an overwhelming shortage of social resources for persons with severe disabilities to live in the local community, which was evident by the tendency for families to nurse their own or to put them into institutions. With the Great East Japan Earthquake, the tsunami caused damage to both medical facilities and the various places that persons with disabilities went during the day, forcing families to break up and making it difficult to find hospitals and institutions to go to. Furthermore, temporary housing was located in relative hilly areas, which made it difficult for people with limited mobility who did not have their own transportation to do routine shopping.
The Focal centers located in the coastal area mainly provide counseling and transportation services to persons with disabilities and individual support, such as creating venues for people to do something during the day. The Relief Headquarters will provide financial support so that focal centers can continue to provide stable activities. At the same time, it will provide support so that centers can develop staff and their organization, gradually shift the work from emergency support to sustained support for the daily lives of persons with disabilities in the local community, and search for a direction forward for developing businesses that can become social resources for the local community.
There is strong demand for transportation services, and Iwate, which requested the cooperation of an organization located in Tanohata-mura, and Miyagi, which has done the same of an organization in Kesennuma-shi, are partnering with focal centers and receiving funding from the Relief Headquarters in order to provide such services (they each handled about one hundred requests a month).
(1) The Focal Center for Persons with Disabilities in North Branch Office of Miyagi (the current Focal Center for Persons with Disabilities in Minamisanriku)
In order to provide support in northern Miyagi (the areas around Ishinomaki, Minamisanriku, and Kesennuma), which sustained major damage from the tsunami, an office was established in the inland city of Tome-shi, which sustained relatively minor damage and is the about the same distance from the three areas. Each launched activities in July through the work of three staff members affected by the disaster in Minamisanriku-cho, but since there were insufficient staff to cover temporary housing sites and individual support in the northern area, the Ishinomaki office was opened and a partnership formed with other organizations in Kesennuma, which made it possible for the north branch office to focus on activities in Minamisanriku-cho and to meet individual needs, such as those for transportation and a place to leave children with disabilities during the day. In 2012, the center will provide day service for children during summer vacation and a place for children to go after school in Minamisanriku-cho.
While building a support system through trial and error and searching for a venue to conduct activities, the center will also move to Minamisanriku-cho and strengthen its partnership with the city in order to fully launch activities in the city.
< Summer vacation day care program for children >
(2) The Focal Center for Persons with Disabilities in Ishinomaki Branch Office of Miyagi (the current Focal Center for Persons with Disabilities in Ishinomaki)
Activities were launched in November with three staff members, including persons with disabilities. The center is continuing to undertake various activities including taking surveys and conducting PR activities in order to make Ishinomaki a good city for everyone to live in. The activities by local persons with disabilities, such as posting information at temporary housing sites in the city, publishing an information magazine, and conducting access checks, have been reported on by various media.
In addition, the center actively provides support to children with disabilities and their families, including holding workshops and events related to various topics such as drawing and music, going on tours and receiving training at organizations both inside and outside the prefecture, and using the office located in Ishinomaki-shi as a venue for social events and exchange of opinions. In FY2012, the center organized and held a year-long course on inclusive education titled “Open Course Series on Creating an Ishinomaki that We Can All Live In.”
< Touch drawing workshop >
(3) Focal Center for Persons with Disabilities in South Branch Office of Miyagi (June 2011-March 2012)
Established in June in Watari-cho, Miyagi, the center was the first support office on the coast devastated by the disaster. Its operation was outsourced to the care provider Sasae-ai Yamamoto, whose offices and facilities were completely destroyed and was struggling to survive. While delivering supplies, providing monitoring services, helping with transportation, and giving aid at temporary housing, Sasae-ai Yamamoto worked to reopen its own business. At the end of March, 2012, the service provider terminated activities as the South Branch Office of Miyagi and took over individual supports in collaboration with the Focal Center of Miyagi and is also supported by Relief Headquarters.
<Parasol cafe at temporary housing>
(4) Focal Center for Persons with Disabilities in the Miyako
The center was established in December, 2011. In April, 2012, the office relaunched operations by transferring the staff and functions of Iwate center, which had been located in Morioka-shi, to Miyako-shi and newly adding local office staff. The office is located in the shopping area in front of Miyako Station, and informal social events, which local residents are invited to, are regularly held.
In addition to continuous activity of Iwate persons with disabilities dispatch project,❉ the office is making preparations for “Michinoku Try”, which will be held in August, 2012, while providing individual support. Through the Michinoku Try, persons with disabilities will undertake a 120-km walk from Miyako-shi to Rikuzentakata-shi under the banner of “rebuilding cities for the future that persons with disabilities can also live in,” and during the journey, various activities will be conducted including making requests regarding reconstruction plans, etc., calling for greater access, checking if facilities are barrier free, and holding events that draw in local residents. The goal of the event includes calming the souls of the departed.
∗ The project is to bring independent living to Iwate, where very few persons with disabilities are involved in the independent living movement. In addition to dispatching and rotating through volunteers who are with disabilities to support persons with disabilities, providing peer counseling for persons with disabilities affected by the disaster, conducting an independent living program, providing information, and undertaking similar activities, the project supports the empowerment of persons with disabilities so that they can live independent lives in the local community. In FY2011, sixteen pairs of persons with disabilities and personal assistants were dispatched, and through July 2012, eight pairs.
<Michinoku Try>
(5) Focal Center for Persons with Disabilities in Ofunato, NPO Center1·2·3)
The center launched activities as an Iwate coastal office in August, 2011. Staff visited the various temporary housing sites in Ofunato-shi, and informed people of their activities while holding various events such as a pacific saury grill. Current activities are being undertaken in collaboration with the Health and Welfare Section, Ofunato-shi, and consist of activities responding to the various individual needs of users, mainly those related to transportation but also those for services of being together, and holding of social events with users and other disability people's organizations in the city. Each month, there is a need for one hundred pick-ups and drop-offs for going hospitals and shopping at temporary housing sites in Ofunato and Rikuzentakata, and this need is now met by three staff members.
The center acquired the status of an NPO in April, 2012. The staff are preparing for establishment of an office for their activities and conducting other services such as opening a salon and providing support in the form of accompanying persons with visual impairment.
<Barbecue for users>
5. Finding the best type of support for Fukushima
In Fukushima, personal assistants are continuing to leave their jobs because of the nuclear accident, which is beginning to make it difficult to maintain the assistant system for persons with severe disabilities. The headquarters is somehow supporting the lives of persons with disabilities through a small number of personal assistants by providing minimum services with assistance of short hours instead of long time, but this has been an obstacle to various activities, including those away from going out, trips, and participating in the greater society. Although what is permitted by the government criteria is no longer possible because of lack of personal assistants, making it difficult to meet the needs related to daily life of persons with disabilities. It is expected this situation will grow worse in the future.
Another major issue was evacuation of persons with disabilities from the disaster area. When persons with disabilities decide to evacuate, it is important that where they evacuate is ready to accept them. Therefore, MUGEN was opened in Sagamihara to serve as both a temporary and long-term evacuation center for people from Fukushima. The headquarters will continue to support the evacuation of persons with disabilities, mainly through MUGEN, and provide individual support for those who want to move. Furthermore, the headquarters will handle support and coordination with related offices and coordinate welfare workers in order to maintain a local care system. It is not easy to answer the question how persons with disabilities in Fukushima should be supported, but we would like to provide support that is closely tied to the conditions in the local community.
<MUGEN Evacuation Experience Tour>
6. From now
The Great East Japan Earthquake brought to light pre-existing issues related to local communities that persons with disabilities live in. These include shortage of social resources, emergency shelters full of barriers, persons with disabilities isolated in the community and unconnected to social welfare services, handling of personal information during emergencies, and the ideal form of not only the guarantee of information accessibility but also support systems during emergencies. Is it possible to do during emergencies what is impossible during regular times? It goes without saying that related parties should be involved in planning barrier-free facilities and reconstruction/disaster prevention (evacuation) plans, and I think that the question is how should we be involved in developing the local area.
The Relief Headquarters has created a video record of testimony from persons with disabilities affected by the disaster in order to leave the lessons learned from the Great East Japan Earthquake to the future. “Left Behind - Persons with Disabilities in 3.11” will be completed by February 2013, and we plan on telling people of the situation in the disaster area by showing the video throughout Japan.
In the future, we will continue to disseminate information on the conditions persons with disabilities face in the disaster area and the activities of the focal centers through various media including the magazines, blogs and websites of each organization that is part of the Relief Headquarters. I hope your long-term support and cooperation.