What happens after treatment stops? Palliative Care in Indonesia

On July 24, I accompanied Rachel House on a home visit to one of its patients – a 7-year-old boy who has leukemia and relapsed just before he was supposed to start the new school year.

After visiting Rachel House’s office to meet the staff and nurses, we were off to the young patient’s grandmother’s home where he and his mother stay.  They stay here so that he can be closer to treatment and support.  The mother and grandmother welcomed us with warm, sincere smiles. The patient had been improving until recently.

When we arrived, the nurse discussed the patient’s symptoms with the mom, brought him a new backpack since he was hoping to return to school, and consulted the mother on his oral chemotherapy. Because some families do not know how to access Indonesia’s free health care, the staff of Rachel house assists and guides them in the process from registration to accessing it.  Families supported in this community are laborers, have no jobs, supported by their families, or ojek drivers (motorbike taxis).  Palliative care is not well-known in the country, and people do not know what to do when their loved ones are sent home from the hospital to die. The families often don’t have emotional support, counseling, or even explanations on what will happen to the patient before he or she passes away. Rachel House was created to fill that need and support these families until the end.

As I observed Rachel House staff with the family they were not like outsiders stepping in to advise on the family’s lives, Rachel House was a part of the family – connecting on a personal level instead of via a chart. One of the nurses explained that this is why she joined Rachel House. She said that working in a hospital, one would feel a bit separated since the charts dictated everything. Here she can support the family on an emotional level and connect more.

After the visit, we parted with the family and the grandmother had tears. She said she was so happy to have the support of the nurses coming to their home. Her grandson was weak and could rest at home. Rachel House hopes to be able to provide this kind of support for other diseases in addition to cancer and HIV. Additionally, they hope to recruit new nurses while expanding awareness and understanding of palliative care in Indonesia.  This is one of those organizations that remind me of why I began to work in the non-profit and foundation field. It is meeting needs that are not being met, and supporting those that have fallen through the cracks to improve the care and basic rights of humanity.

Learn more about and support the work of Rachel House here: http://www.globalgiving.org/projects/rachel-house-pediatric-hospice-in-indonesia-cancer-hiv/

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Anarchists? Rockers? How about a Homeless World Cup Team supporting the marginalized in Indonesia

Trophies from the HWC 2011

Trophies from the HWC 2011

July 23, I met with Rumah Cemara, an organization that played in the Homeless World Cup 2011 representing Indonesia. Immediately I knew it was not an organization like others – every person I met was not only laid back, cool, and “against the grain”… every person I spoke with was inspiring and open to share the challenges and experiences faced throughout life.

What type of challenges and experiences am I writing about? Rumah Cemara was created to increase the quality of life for former drug users with HIV/AIDS, provide care and social support, treatment, and decreasing discrimination in the community through outreach.  When I walked in I could feel the openness and lack of hierarchy within the organization and its members. Everyone mingled with everyone; there was no restrictive bureaucracy – just a safe, nurturing, and growing environment.

When touring the organization, it was great to see the Homeless World Cup 2011 trophies for “Best New Team” and “6th in Tournament”.  After taking a tour, I sat down with Ginan, the founder, and he explained that being a part of Homeless World Cup was a life-changing experience. He never dreamed that “people like us can represent our country in a world class tournament.” He said that the tournament is not just a game, it’s about change within yourself. When I spoke with another player, who played as a defender in the tournament, he said he loved being able to play soccer with people from all over the world. He had never met people from those countries before, and he said meeting them was exciting. What was his favorite part about the tournament? “That people like ‘us’ can represent the name of our country.”  When he returned, he felt very excited and proud, especially when returning to Bandung. People were cheering for the team at the airport, and that day “I was crying… crying because I felt so proud.”

Rumah Cemara provides these marginalized youth an opportunity to have a safe environment, a family, and a trusting network to connect with, learn from, and grow with.  Why do they do football/soccer programs? Ginan and staff say because It is an effective way to spread the message of Rumah Cemara and to bridge the gap with the local community, decreasing stigma and discrimination. Rumah Cemara is a place to be free for anyone and everyone – a place to be themselves. Rumah Cemara hopes that Indonesia can be a place without discrimination.

Interviewing Rumah Cemara Founder about the HWC

Interviewing Rumah Cemara Founder about the HWC

Speaking w/ a Rumah Cemara member and HWC player

Speaking w/ a Rumah Cemara member and HWC player
To learn more about this organization be sure and check them out here: http://www.rumahcemara.org/

Meeting needs for youth in Indonesia – My day with YUM

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On July 17, I was able to visit the first, and still the only, library provided by Yayasan Usaha Mulia, or YUM, in the community of Cipanas, Indonesia. The families there consist of farmers, labor workers, and vegetable sellers at the markets.

When not in school, local youth have the opportunity to get tutored and participate in activities at the library like educational games, creative arts & crafts, and movies – when I arrived the children were making school schedules to take home. These included coloring, drawing, and cutting out shapes to make it their own while learning the days of the week.  These youth were ages 6-12. The older kids were working on the computers, and the younger ones were drawing pictures. It was fun to see how each group of younger children had a general theme they decided to draw – one group drawing a home and another drawing elephants and fish. The library was colorful, encouraging creativity, safety, with the walls filled with books, dictionaries, novels, and more. I also saw the “boxes of books” which is part of the mobile library program for other communities’ schools. YUM’s goal is to add more schools to its current 2 where it provides books. These are the first “libraries” in these communities.

I asked the librarian what he did before working at this one, and he said he was a teacher at the government schools. He said the schools lacked expression and creativity for the children, so when he was introduced to the opportunity at YUM, he was happy to join.

After, I went on to see the vocational training program, the organic gardens, and meet the community. I met YUM’s bookkeeper. When he was in 4th grade he was orphaned, so he was brought to YUM’s center. He stayed in YUM’s program and now works for the organization. I asked him to describe YUM and he said, “a place where you are happy.” The first program I saw that day was the sewing class. This program teaches young adults to make clothes, bags, and using recycled scraps for creative products. I sat down with one of the students, a young man who hoped to one day become a tailor and design his own clothes.  I then spoke with another young woman named Aji who was 16 and in her 3rd year of senior high school. I asked her why she took sewing class, and she said because she could make more friends and she wanted to be a professional designer. All of the youth explained to me when they are not in school they are usually helping the family or working. The classes had not only young women, but also a few young men working just as hard to develop skills for a career after.

Next, I sat in on the computer-training course. The 2 trainers were former students of the class themselves. The girl trainer explained to me she wanted to go to school, but after elementary her parents could not pay. YUM helped pay for her costs and now she loves math, hopes to share her knowledge, and to attend university to be a chemical engineer. She was an extremely bright and mature young woman still in high school. Aris, from YUM, explained to me 75% of youth going through the vocational training program receive jobs. If they don’t get a job, local youth marry young or become a domestic or labor workers.

Finally, the staff took me to visit the local community as well as explore the organic gardens planted by local schools and students. See the pictures in the slide show – it was such an incredible and inspiring experience to not only meet the children of Cipanas, but also to get to know the staff behind the impact-organization, YUM.

How to turn trash into jobs, education, and laptop bags – Day with XS

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On July 20, I was able to visit XS Project, an organization turning trash into quality products, creating jobs, and providing educational scholarships.

I arrived to the office and met staff doing everything from sorting and cleaning loads of trash, unused car seat covers, and old marketing banners, to working on product development, and sewing the products. I sat down with one of the sewers, and he explained he had been with XS since 2005. What brought him here? He said a friend was working at XS. He used to make seat covers for airplanes, but now he can make products from recycled products. At the time, the team was putting together very cool laptop cases created from a combination of seat covers and discarded marketing banners.

I then met the head of product design and the head of finance.  The head of finance explained, XS is “not just cleaning the environment, but it is creating jobs for those who need it. XS is also providing education scholarships – it’s like 3-in-1.” The head of product design explained that he was first introduced to XS in college and thought it would be a great challenge to create products out of recycled material.

After meeting the staff and watching the process of turning recycled material into new goods, Retno and I went to visit the community where it all starts – the trash pickers. When we arrived the kids were so excited and everyone came out to say hi and play. Retno brought a box of pencils and crayons gathered from other schools, and the children all dove in to grab their handfuls. We stopped to speak with every family and to hear their current needs and issues. The families live on this land and work for a “lampak” which is the boss of that trash picker community.

I asked the kids what they studied and they all shouted out, “math, Bahasa (Indonesian), Ingrish (English), and Quran reading!” I then asked a few what they wanted to be when they grow up – and 2 young girls said a chef and teacher. Another young girl said a doctor. XS provides funding for the children’s schooling directly to the school and follows up with the school and teachers to see how their progress is. Retno encouraged the moms to tell their kids to go to class. In this community, the parents’ generation mostly did not attend school so this is a new opportunity for their children.

FED/GHRE Filling the Gap for Burmese Migrants’ Rights in Thailand

On June 18 I visited Foundation for Education and Development/Grassroots Human Rights Education and Development in southern Thailand – a place called Khao Lak.

Burmese migrants’ children ready to learn thanks to Grassroots Human Rights Education And Development

The first project I witnessed was the community leader training. Burmese migrants from fisheries, plantations, and construction who came to Thailand to find work had gathered for a 2-day training. These attendees were receiving training for improving and leading community development. All were from the Phang Nga province and were there to also network with each other.  The founder said that part of the training’s purpose it to increase the awareness of the migrants’ human and labor rights. Many workers come to Thailand not knowing their rights, which then are abused by those in authority like the plantation  owners, construction company owners, and immigration authorities.

The temporary shelter and women’s center – additional services provided to Burmese migrants by FED/GHRE

The second project I visited was the education program for the Burmese migrants’ children – FED/GHRE wants to protect children’s rights by encouraging that they don’t have to work or marry young… they can stay in school. Awareness is not just for children but for the parents as well.  I sat in on activities from preschool age to the young adult, youth outreach program.  The older children receive traditional schooling in addition to democracy and human rights training.

Preschool Class

In Thailand the problem is that to integrate migrant students into public schools, money and language-fluency in Thai is required, which many children of Burmese migrants don’t have. Additionally, transportation to these schools is not easy therefore students are provided transportation via the FED/GHRE truck from certain areas to the FED/GHRE school.

One FED/GHRE staff member I met had joined this organization at age 12 and continued through the program. She is now 19 and a translator for the organization. She said without FED/GHRE she probably would probably not have any opportunity and have to marry young or work in a plantation like many of her peers. I was able to also speak with a FED/GHRE recipient who has been integrated to a Thai school. He said he has both Thai and Burmese friends there and enjoys playing football as well as art class because he loves to draw mountains and landscapes.

Before I left, I was able to stop in one last time and observe a school celebration of Aung Suu Kyi’s birthday. The students were quizzed on historical events, the life of Aung Suu Kyi, and then watched a short documentary. Although there have been public changes within (Burma)Myanmar, change has not been seen in this area with an increase in new students arriving everyday.  This group of multilingual Burmese youth in Thailand will grow up not only with math and language skills, but a with a global mindset trained in democracy and human rights.

Aung Suu Kyi’s Birthday Celebration

Jacqueline
GlobalGiving InTheField Representative | Texas

Jacqueline is an InTheField Traveler with GlobalGiving and is now making her way across Southeast Asia. Jacqueline has lived all around the U.S., Central America, backpacked along Australia’s eastern coast while volunteering for the National Park Service, western Europe, and traveled around the world. You can also follow her via Twitter.

For more information about GlobalGiving, click here.