In Observance of the International Day of Persons with Disabilities, December 3 – AAR Japan’s History in Disability Assistance Future Activities

December 3rd was the International Day of Persons with Disabilities. Since the 1980s, AAR Japan has been supporting persons with disabilities, as they are a particularly vulnerable refugee group. We continue to aim to create communities that support one another regardless of disability, as described by the United Nations’ Convention on the Rights of Persons with Disabilities, by encouraging the economic, mental, and social independence of persons with disabilities through our activities.

Sayako Nogiwa, program manager of persons with disabilities, recounts AAR Japan’s history and mission to support persons with disabilities, and shares some stories from local sites.

Children march with pieces of paper in hand that say, “we need support from teachers to enroll in schools.” They are actively involved in a campaign to enable children with disabilities to enroll in schools. (10 October 2018, Cambodia)

Starting with the Thai Refugee Camp and Beyond in Asia
AAR Japan began its initiative in the 1980s at Thai and Cambodia refugee camps by providing supplies such as glasses and wheelchairs. In 1993, AAR Japan started a vocational program for persons with disabilities in Cambodia and in 1996 built a wheelchair manufacturing facility. By 2001 AAR Japan started the manufacture and distribution of wheelchairs in Laos, amid other mid to long term programs. At the same time, AAR Japan opened a vocational training institution for persons with disabilities in Myanmar and supported rehabilitation centers for persons with disabilities in Tajikistan and Afghanistan. When the United Nations implemented the Convention on the Rights of Persons with Disabilities in December 2006, it stirred the interest of many governments and, in the 2000s, AAR Japan identified vocational training and educational programs for persons with disabilities in Asia as a focus area.

Vocational training center for persons with disabilities in Cambodia operated by AAR.

Focusing on the Support of Persons with Disabilities at Disaster Sites
When the deadly Cyclone Nargis swept through Myanmar in May 2008 during the military regime, AAR Japan provided emergency aid. During my mission, I was surprised to learn from victims that “persons with disability not only have no access to emergency relief goods, but also do not have access to information.” AAR Japan received many donations as well as aid fund from the Japan Platform (JPF). Although the JPF guideline did not specify a requirement to focus on persons with disabilities at the disaster site, JPF recognised their distressed circumstances and were able to execute a large-scale aid program for persons with disabilities. The Myanmar cyclone storm was followed by events such as the Indonesia earthquake, the Pakistan floods, the Great East Japan Earthquake, and the West Japan floods. Through our involvement in providing aid to these disaster sites, we believe we are raising awareness regarding the need and importance to support persons with disabilities at disaster sites.

AAR distributes food at the deeply impacted Raputta district after Cyclone Nargis.

New Activities Moving Forward (2013 to present)
In 2013 we started an inclusive educational program in Cambodia, Tajikistan, and Haiti to enable children with and without disabilities to attend school. Domestically, we supported the reopening of welfare institutions, expanding of market channels and the furtherance of disaster prevention measures in areas impacted by events like the Great East Japan Earthquake and Kumamoto Earthquake. We continue to present and share the knowledge and experience gained through our experience at local sites at international conferences for persons with disabilities, such as the Asia-Pacific Community-based Rehabilitation (CBR), meetings and in journals.

Nogiwa (right) distributing aid and surveying the conditions of the welfare institutions after the Great East Japan Earthquake. (March 2011)

AAR Japan’s Vision for the World and Its Mission
At the international conference held in Beijing towards the end of 2017, UNESCAP (United Nations Economic and Social Commission for Asia and the Pacific) highlighted the issue that persons with disabilities have 2-4 times higher mortality rates than the rest of the population in the Asia Pacific region. Recent incidents such as the Sagamihara massacre, which took place at a care home for persons with disabilities in 2016, and the litigation against the government by victims of the Eugenics Protection Law (the “forced sterilization law”) in 2018 brought attention to extremist ideologies against persons with disabilities in Japan.

What can we do? AAR Japan became an affiliated organization of the Japan Council on Disability (“JD”) in 2016 and since then has collaborated with many organizations and associations on various initiatives for persons with disabilities.

While AAR Japan is an active member of JD, our activities extend beyond supporting persons with disabilities, and we consider that to be one of AAR Japan’s strengths despite having a small team at our Tokyo headquarters. That is because through our various domestic and international activities, we are able to share our experiences with people and raise awareness and understanding about the persons with disabilities community. Leveraging what we have learned, we hope to build a world filled with kindness and will continue and build upon our experience and activities.

Feedback from Local Sites
“I Have Friends and Can Read Now” Cambodia – Educational Support Sotheara (8 years old)
Sotheara (center of the picture) was born with several disabilities. His parents were afraid that school would not be prepared or equipped to accommodate children with disabilities and had never sent Sotheara to school. In collaboration with specialized institutions, AAR Japan provided mobility equipment, provided rehabilitation sessions, and are working to make the school and its premises’ pavements and bathrooms accessible. Teachers and students have accepted Sotheara and he has been going to school every day. Sotheara has friends at school and is enjoying his time there.  Sotheara’s speech is clearer and is starting to read text.

Sotheara has a big smile on his face and is always surrounded by many friends. (November 2017)

“I was Able to Get My Dream Job” Myanmar (Burma) – Job Assistance Hnin Hnin Yae (19 years old)
At 10 months after birth, Hnin Hnin Yae suffered from a burn that contracted her skin, causing her to become a person with disability.  Hnin Hnin Yae took a leave of absence from her first year of high school and joined AAR Japan’s vocational training beauty course in order to work and support her family. “Because of what I learned from the vocational training program, I was able to find my dream job in the beauty industry. From the dormitory life, I learned to wake up early and clean, etc. and to use time efficiently. I hope that many more persons with disabilities can learn from the valuable experiences at the vocational training” said Hnin Hnin Yae.

Hnin Hnin Yae is now employed at a hair salon. (October 2018)

“We are Diligently Operating Our Store Every Day” Sudan – Mine Victim Support - Khadiga
While moving to a neighboring village with her 5 children, Khadiga (person in the front of the picture) encountered mines and lost 3 of her children. Although Khadiga and 2 of her children survived, they were severely injured and Khadiga has scars from fragments of mines on her stomach and the back of her neck. After the incident, her husband passed away from poor health conditions. Since the physical trauma from the mine injuries made physical labor challenging for Khadiga, AAR Japan recommended that she operate a sundries store and supported the start of her business.  Khadiga said that “after having lost my husband, I was unsure how I would sustain my family’s livelihood and lost the will to survive. Now I am determined to live with my 2 children and am diligently operating my store every day.”

Khadiga’s sundries store. She is improving her business by offering unique products not offered by other nearby stores. (February 2018)

Support for a Turkish Family through Home Visitations – Wellbeing Support – “Reem” (13 years old), “Rama” (11 years old)
4 years ago, Reem(alias), Rama(alias), and their family fled from Syria to Turkey. The two were visually impaired and only had 20% of their vision so needed eye glasses. However, the family could not afford glasses as they were too expensive. AAR Japan assisted the family with certain administrative processes involving the Turkish social security program and now the children can enjoy life with glasses. AAR Japan also assisted with certain administrative processes to enable the children to go to school. However, they are currently unable to go to school because they are at home supporting their father who has been immobilized by his hernia. AAR Japan continues to visit their home and provide school supplies or transportation services for hospital visits.

Sisters wearing their glasses. (February 2018)

Japan Western flood: Aiming for Immediate Restoration

After disasters, AAR Japan has mainly prioritized reaching out to the most vulnerable groups who are usually left out without support, such as people with special needs.

After the Western Japan was hit by the recent torrential rain and flooding, AAR Japan helped out with the restoration by providing welfare facilities with daily necessities and other items necessary for their reopening, such as computers and printers.

We are currently working on a restoration project to apply in the affected areas.

Making a progress towards recovery step by step:

“Okayama Mind Kokoro” is an NPO located in Mabi in Kurashiki City, Okayama.  This NPO was aiming to support people with special needs by running care homes, where they can live in comfort, as well as a brewery or a beer hall, where even the disabled can work.  “Okayama Mind Kokoro” believes that they can make Mabi village a comfortable place for everyone by offering space for interacting with each other, regardless of disabilities.  However, when their project was well on its way, the recent floods destroyed the beer hall completely. The ground floors of eight care homes were also completely washed away with all the furniture inside.

Some of the residents in the care homes have found it difficult to adapt to the radical change in the different environment and many of them had to move to shelters where they face many difficulties.  As such, it is very important to get their original care homes re-opened as soon as possible. “Okayama Mind Kokoro” staff cleaned the place as quickly as possible in order for the residents to return. The home was temporarily re-opened on August first and residents who used to stay at a hospital were able to come back. There is a good chance that some companies will donate refrigerators and laundry machines.  However, the brewery and beer halls that the residents found joy in working at are still out of service and the re-opening day is yet to be confirmed. Considering the time necessary for making barley into malt for local beer, we will have to wait for another year if we can’t start it by this autumn.

AAR is considering providing and fixing the necessary equipment for this NPO to help them re-open and proceed with their services.

Mr.Shinji Tada, the representative of Okayama Mind Kokoro expressed his gratitude to the AAR emergency assistance team for delivering supplies and attending to the needs of the residents.  He also expressed his firm determination by saying, “In spite of the harsh reality, we are steadily heading for restoring our facilities.  With your encouraging words, we promise that we will move forward.”

AAR staff Takumi Takagi (on the left) visiting the president of Okayama Mind Kokoro and listening to their needs while delivering oral rehydration solution, rolls of toilet paper and baby diapers to him. (Date:2018/7/24)

“If it happened to me”

Nima Elementary School, located in Kurashiki in Okayama Prefecture, was turned into a shelter. AAR cooperated with NPO Peace Project from July 23rd to 25th to prepare meals for the shelter’s residents for another 3 days (July 28-30).

Before preparing the meals, we spread flyers about this news to the residents and received a lot of positive feedback such as “We have been looking forward to it!”

Despite the weather forecast predicting that the approaching typhoon No.12 might cause some damage, everything went as we had planned. We gave 300 servings of seafood curry on the 28th and 250 servings of rice with grated yam with fish soup, natto, turnips and pickled cucumbers.

A lady in her 80s complained “I am totally worn out just by having to stay in this gymnasium.” Another man in his 60s said to us, “While being engaged in voluntary activities, I sometimes wonder ‘What if such a disaster were to hit me?”

Mr.Kanzaki, the President of the Nima community, spoke about the necessity of support and advice of administration offices and support agencies so that the residents in Mabi can all come back and enjoy their lives the way they used to.

The residents of the shelters have been frustrated because they have been living there for weeks now and still do not know when will they go back home.

Ms.Mari Tanigawa (board of directors member), who used to be a marathon runner, offered a course on marathon for the shelter’s residents. Peace Project also organized a bingo competition in the shelter.

The residents were smiling, after enjoying light sports and recreation events.

Ms. Mari Tanigawa, AAR Japan board of directors’ member, who visited the shelter on July 28 and 29, is preparing meals with a local volunteer and setting the tables. The meals were received favourably and residents lined up every time the meals were prepared. (Date:2018/7/28)

  

Ms. Tanigawa is warming up the bingo competition (in the middle). On the left is Mr. Ben Kato the representative of Peace Project and also a member of AAR board of directors. (Date:2018/7/29)

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Sudan: Grappling with Mycetoma, an Infectious Disease Still Unfamiliar to the World Population

Mycetoma is an infectious disease and is one of the tough issues that Sudan is tackling currently. An  staff member of AAR’s Sudan Office, Ryohma Yamagishi, reports the latest on this challenges presented by Mycetoma, including AAR’s efforts and activities to cope with this lingering illness.

Causes and infection routes still unidentified

Mycetoma is an infectious disease whose peculiar variety of germs exist in the soil and pass on to humans through abrasions of hands and feet, and start affecting muscles and bones. It triggers inflammation within the body at first, and the affected area grows gradually larger over some a period of time. In the later stages of Mycetoma, when the inflammation gets rather widespread, sufferers not only find it difficult to manage their daily lives but also come to be bothered by acute pain when the infection reaches as far as the bone. In the worst cases, the victim could ultimately lose his or her life.

In the earlier stages where patients have not yet suffered serious damage, they can be cured of this illness with the help of appropriate medical treatments including medication. When the illness progresses to a critical condition, however, they might unfortunately have no choice but to have their limbs amputated. The biggest concern about Mycetoma is that what causes the conditions mentioned above and how the infected person contracted the illness have not been fully identified yet.

A boy, who underwent an operation on his hand which had been infected with Mycetoma, being attended to by his mother. Andalus village of the White Nile State  (November 16, 2017)

Sudan has suffered from a particularly high morbidity rate of this persistent and progressive disease, Mycetoma. This has allowed Sudan, however, to become one of the best-prepared nations in the world with measures against its Mycetoma infections. Despite the prevalence of the disease in Sudan, Mycetoma has not yet become a disease widely familiar among the Sudanese, meaning that the affected sometimes end up  being given inappropriate medical treatments. Those infected also experience discrimination in their community.

Putting all these factors into consideration, AAR Japan launched substantial supports to Sudan in 2013 and started to provide preventive measures against Mycetoma as well as medical treatments to cure those infected with this illness.

Visiting door-to-door to provide knowledge and information to local people

AAR Japan has provided, mostly within and around Andalus Village of the State of White Nile, activities to let people acquire greater knowledge about Mycetoma, to allow them to understand the significance of securing the earliest possible opportunities of getting medical treatments. These activities also include preventive measures against this disease and have allowed seriously ill patients with advanced infections to undergo medical procedures.

During the three days’ campaign and activities in which I took part in November 2017, we transmitted the knowledge about Mycetoma to 1,726 villagers in total and provided opportunities to have surgery for 35 of the affected locals in the area.

As to the knowledge about Mycetoma, AAR’s staff members paid visits to individual houses and community spaces in this area and provided villagers with detailed explanation with the help of visual aids.

Most of the cases related to Mycetoma infections have been reported in economically underdeveloped areas of Sudan. Andalus Village, where we performed our mission, is also located in such an area. While it might sound steady but too slow a procedure that we visited houses one by one and explained things in detail to locals at each household, but we regarded it as the most efficient working method to meet and talk to residents in person, owing to a lack of mass media such as TV sets, radios or newspapers available in the village. The AAR Japan team thought that the above-mentioned method would enable us to convey information and knowledge to a good number of residents at once without giving misleading contents or creating any misunderstanding among them.

We found that only a few locals had known Mycetoma and all those who participated in our activities were well-focused enough to receptively listen to our presentation during the campaign. I felt that all of them assumed the kind of positive attitude enabling them to absorb as much of the new information as possible, as they felt that the information and knowledge previously available to them had been quite limited.

Our key message for locals has gradually spread among more and more of the residents via human routes over time.

Enlightening activity at a local elementary school in an effort to transmit facts and knowledge about Mycetoma to pupils, while Ryohma Yamagishi standing still and alert behind the lecturer.

Andalus village White Nile State (November 18, 2017 )

While one of the AAR’s staff members was talking about Mycetoma in the presence of residents one day, he found a mother who already possessed a very solid knowledge of the conditions related to this disease. When he asked her where she had acquired that knowledge and information, as he hadn’t expected such a case, she said that her child had once heard another AAR staff member’s presentation about Mycetoma and shared the information he learned. This episode has impressed me greatly and provides evidence that the facts and knowledge about Mycetoma that AAR prepared for locals have steadily taken root among villagers.

Surgeries were provided to patients for free by doctors whom we had dispatched from Khartoum, capital city of Sudan.

It remains difficult to prevent the infection of Mycetoma due to reasons such as insufficient transmission of knowledge and information about this disease, and also a lack of a solid medical system that can fully cope with this issue. It will continue to be essential for the villagers to have access to medical treatments after their initial infection, including immediate care for the affected parts of their body. Especially in the case where the infection has grown larger as the disease itself develops, it must be removed completely through surgery.

Additionally, Mycetoma is not yet well known even among doctors in Sudan and medical operations are a possible choice for the affected only in designated hospitals in the capital city of Khartoum. Andalus village is situated far away from the capital city, which might force the patients to stay there for several days when they seek after medical treatments. Very few villagers can come up with the travel  or accommodation funds required for their long journey to the capital. Also, only a few people can leave home and their daily housework chores behind them, or take days off from their occupations (mainly agricultural fields and dairy farms), which leads to the frequent case where they give up opportunities of getting medical treatment after having been infected with Mycetoma, in which ultimately leads to them being in serious condition.

AAR had doctors and medical staffers dispatched from Khartoum and provided surgeries for nothing to cope with Mycetoma. Andalus Village of White Nile State (November 16, 2017)

To assist with this, AAR dispatched to Andalus Village doctors and medical staffers who had treated patients infected with Mycetoma and had them perform surgery for free to the patients. Those who had been seriously ill enough to need surgery seemed to have put many uneasy days behind them, as after the surgery, many of them had a very serene and bright expression on their faces despite some lingering pain from their operation, which fact very much attracted our attention.

In the case of an eighteen-year-old youth who underwent the surgery, he developed Mycetoma around the age of 10 and lately suffered from acute pain, which deprived him of sound sleep. After the operation, he said that he was able to have a good sleep for the first time in ages and was also able to find the food prepared for him palatable and delicious.

He told us that there were still many more people possibly suffering from untreated Mycetoma in his neighborhood and he would be sure to advise them to seek professional care and treatments at medical institutions. 

A youth who had been infected by Mycetoma said, “Thanks to the surgery, I have been able to have enough sound sleep for the first time in ages and also been able to find meals prepared for me to be palatable and delicious.”

Andalus Village, White Nile State (November 16, 2017)

We have provided various activities in an effort to realize our supportive mission to visit areas dealing with the issue of Mycetoma, and probed the status  of locals’ lives individually so as to the identify complex factors with which they were facing. They were leading everyday lives with thr painful idea that they might continue to be exposed to a risk of developing Mycetoma at any time in their daily environment.

The efforts of our group and individual meetings with those living with a pressing risk of developing Mycetoma in their daily lives have enabled us to better understand how uneasy they have been feeling for lack of information. We further understand how anxious they have come to feel when finding themselves without opportunities for surgery despite their earnest wishes for medical treatment.

Our rescue efforts could be translated as slow but steady, for we have provided the scheme in which we try to stay closely attuned to individual circumstances of villagers. Seeing the results of our work, I feel that such laborious efforts have been sufficiently rewarded.

Children in the village with notebooks in their hands, which AAR has distributed and that contain information and knowledge about Mycetoma.

Andalus Village( November 17, 2017)

  

Reporter

 

Ryohma YAMAGISHI、AAR Japan Sudan Office

Ryohma YAMAGISHI has worked at AAR Japan Sudan Office since July 2017.

At a college, he majored in social development and international law.

Working for the Japanese Red Cross Society, he carried out a research on peace formation at a graduate school. After working for the Japanese Embassy in Bosnia as a research specialist, he has joined AAR Japan.

He is from Kyoto Prefecture.

(Profile as of the date of the article)

Western Japan Flood: Listening to the Voices of the Victims

Restoring a sense of calm for children with disabilities

 “Nozomi Kids Station”, an after-school daycare for children with disabilities, re-opened after relocating to Soja City (July 23^rd, 2018)

AAR Japan’s emergency response team is continuing relief activities in Mabicho, Kurashiki City, Okayama Prefecture, which suffered extensive damage. On July 23^rd, AAR Japan visited “Nozomi Kids Station”, which provides after-school day care services for children with disabilities. 11 children with disabilities, ranging from elementary to high school age, had been using their services, but the recent flood had completely destroyed the facility. Their five shuttle cars were also submerged in the flood waters. The manager, Ms. Tomoko KAWAKAMI, gave up on resuming services in the same location and decided to relocate to the neighboring Soja City. However, the new 130 square meter space only had an air conditioning unit made for a 13 square meter space. In this hot and muggy room, the children were playing with the stuffed animal toys that the staff had managed to acquire. In an effort to make the new space more enjoyable for the children, whose living conditions have become less certain, AAR Japan provided toys, two fans, and storage items, such as a shoe rack. The children were very happy and quickly started playing with the new toys. Watching them play lifted our spirits.

The stuffed animals and toys that the staff managed to gather for the children. (July 23^rd, 2018)

AAR Japan was able to deliver toys to “Nozomi Kids Station”. The childrens’ smiles lifted our spirits. Pictured are Haruko TANAKA (center) and Adly LAGAT (right) of AAR Japan

Those who support the soup kitchen
At the Kurashiki Public Nima Elementary School evacuation center, AAR Japan is working with the non-profit organization Peace Project, helping to run soup kitchens. There is now fresh running water in the evacuation center, which had previously been turbid, so bottled water had been used in the soup kitchen.

AAR Japan provided many different side dishes centered around vegetables, which are currently in short supply. (July 25^th, 2018)

On the night of July 23th, 2018, AAR Japan provided 250 meals including rice, miso-simmered mackerel, and hijiki seaweed. The line started at 5:40pm and continued to around 7pm, and there were people who came up to us to thank us, saying: “This was my first time eating fish and prepared dishes since the disaster. It was very good! The children were happily eating and kept saying how delicious it was.” Listening to them lifted our spirits. On July 24^th, 250 meals were provided. For lunch, there was yakisoba, and for dinner there was seafood curry, cucumber seaweed daikon sunomono salad, and miso-simmered daikon. The sunomono salad was added at the last minute, after we received a request from one of the victims. The ice-chilled sunomono salad was very well received. On July 25^th, 250 meals of nebaneba rice bowl and fish soup were served for lunch. For dinner, dinner, there was curry rice provided by Curry House CoCo Ichiban, so AAR Japan provided 70 portions of rice that were needed, as well as sides of eggplant, potato salad, burdock salad, bean sprout namul, and cucumber – enough for 300 meals. We made an effort to provide many sides, centered around vegetables, as there have been less of these available.

The dishes were well received with people saying: “This was my first time eating fish and prepared dishes since the disaster. It was very tasty!” (July 23rd, 2018)

We received many words of appreciation; people told us: “We were really happy to be able to eat prepared meals, Japanese pickles, and things like natto, which we haven’t been able to eat since the disaster. It was very good.” A couple in their sixties said: “Our house flooded up to the second floor. We’re currently staying with our daughter, but it is cramped, and we feel bad for our daughter. During the day we have been cleaning up our house. We’ll eat half of the prepared dishes here, and will eat the rest with our daughter at home. Eating the potato salad and burdock salad helped me relax.” A man in his late seventies told us: “The eggplant was delicious!”

When we opened the soup kitchen, a line quickly formed, and we weren’t finished with serving meals until 7pm. (July 24^th, 2018)

Many volunteers helped us with the soup kitchen. Preparing and distributing the food, as well as cleaning up, takes approximately five hours. This could not be done in the blazing heat without the help of the volunteers. A woman who prepared simmered daikon at home said with a smile: “I only slept for 3 hours, but there are people who take the time to come up to me and thank me. And when I hear how happy they are, I get energized.”

Without help from the local volunteers, we would not be able to continue the soup kitchen. (July 25^th, 2018)

A man in his twenties, who volunteered both during the day and in the evening said: “My house was flooded up to my knees on the 2^nd floor, so up until yesterday, I was cleaning up my house. I’m currently staying at a friend’s place. My friends all say that Mabi is the back-country, but I love that about Mabi, there is an understanding between neighbors, and it is an easy-going place. I am very happy that people have come from afar to run a soup kitchen.  That is why I volunteered this weekend and will be here again next weekend.

AAR Japan will continue to provide aid in the affected areas.

Pictured is Shinichiro OHARA of AAR Japan (center) working alongside the local volunteers (July 23^rd, 2018)

In addition to everyone’s donations, these efforts were supported by JPF, who supported the survey activities, and Mercy Relief, with whom we are running the soup kitchen.

People were exhausted after scraping out the mud from their flood damaged houses, but looked recovered after having meal.

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