Good Intentions & Tangible Harms: One Cambodian's Story

January 21, 2015

Last June I had the privilege of attending a global meeting of the Better Volunteering, Better Care Network, an interagency initiative dedicated to raising awareness about the harms of orphanage tourism while promoting ethical alternatives. At this small gathering I was fortunate to meet Rebecca Nhep, a Field Coach for ACC International Relief, a Christian organization advancing principles of justice and equality around the world. I learned a great deal from Rebecca through her extensive understanding of child rights, human rights, and deinstitutionalization of orphanages in favor of family and community-based care networks. When she shared her foster son’s story with me, I immediately asked if they would be willing to write a guest blog here at globalsl. That story appears below. It is a shocking and cautionary tale that brings to mind Jessica Evert’s important work to ensure ethical interactions among global health students and community members in  resource-restricted healthcare settings, as well as Judith Lasker’s research on short-term international volunteer programs in health. (Jessica is a medical doctor and executive director of Child Family Health International, while Judy is a Professor of Sociology at Lehigh University).

Rebecca and Virak write in Australian English, which I have mostly preserved. Their grounding in a Christian tradition is an important reminder of the power of religiosity in moving many people toward justice. As Gerald Schlabach (Professor of Theology, University of St. Thomas) has suggested on this site, faith networks may at times facilitate longer connections and relationships than other forms of international volunteering. Rich Slimbach (Professor of Global Studies, Azusa Pacific University), on the other hand, has illuminated the ways in which dominant narratives around faith-based charity may sometimes be at odds with a development approach. Yet Slimbach’s insights and work build on decades of partnership stemming from a location within a faith-based institution. I share the links above simply as additional reflective reading that relates to this important post from Virak and Rebecca. Thanks for reading, and please share Virak’s message. – EH

 

Good Intentions & Tangible Harms: One Cambodian’s Story

Soun Virak and Rebecca Nhep

My name is Virak, and I am 18 years old. I am one of seven siblings born and raised in Phnom Penh Cambodia. I never met two of my older siblings- they died days after they were born from a rare genetic condition called Recessive Dystrophic Epidermolysis, Bullosa or EB for short. No one in Cambodia knew what this condition was called when my older siblings bodies turned to blisters hours after their birth, and no one knew what the cause of this condition was when they died, so fate and bad karma became the natural scapegoats. The death of two children was a lot for my mother to cope with, so when I was born several years later with the same condition, it was too hard for her and she gave me away. No one thought I would survive but here I am against the odds just shy of my 19th birthday.

My grandmother took me back from the orphanage my mother placed me in and raised me. She is the reason I am alive today. She is illiterate, and doesn’t understand this condition well, but she has been by my side caring for me since I was a newborn baby. She took me to so many doctors, natural healers and would listen to anyone who thought they could cure me, but there is no cure for what I have. My condition is severe. At the slightest pressure or abrasion, my skin blisters and comes off leaving me with constant open sores all over my body. My hands and feet are atrophied from years of open wounds and the fusion that occurs during healing. It affects the skin lining inside my mouth, throat and stomach and makes it hard to eat. Despite this, I still enjoy life- hanging out with friends and family or going out for pizza.

Here in Cambodia people can be blunt and people can be cruel. They stare and make rude comments. Some tell me I must have very bad karma to deserve this. I however believe in God. And whilst I wish this hadn’t happened to me, I know it is not my karma, and I know God loves me and I have an eternity waiting for me that doesn’t include EB. Not everyone is cruel. Many Cambodians have been kind, supportive and tried to protect me from the cruelty of others.

Numerous foreigners living here over the years have taken an interest in me. They’ve been kind and some have provided me with critical support during really difficult times. Others, with the best of intentions, have tried to help me in ways that have ended up hurting me more. It’s hard to talk about because their hearts have been in the right place and they have been generous, but sometimes foreigners don’t understand the full picture, or try to help in areas where they don’t have the expertise or knowledge, and the truth is that good intentions alone can’t always mitigate harm.

The most extreme example of this happened when I was about 16 years old. I fell and as a result had a particularly severe wound on my foot, which exposed my flesh and bone and wasn’t healing well. A short-term team associated with my local church, which is run by an American faith-based organization, visited me and saw my foot. They wanted to intervene to help me. One team member led me to believe she was a doctor, which I later found out wasn’t the case. They took photos and emailed her father who was a doctor overseas, and together they made a very inaccurate diagnosis. Without asking me or explaining anything to me or my grandmother, they put me on very strong steroid medication. In doing so they undermined and altered the treatment plan given to me by my long-term dermatologist in Cambodia. I didn’t understand what they were doing but because they were associated with the local church I went to and were foreigners, I didn’t feel like I could speak up and question them. They changed my wound care regime and instead of my grandmother doing it, they insisted that they came and did it as a team each day. It was excruciatingly painful. I reacted strongly to the steroids. I ended up with heart arrhythmias, blood pressure issues, extremely high temperatures, and my grandmother and I honestly thought I was going to die.

I didn’t know what to do. I was desperate to stop the steroids, but I felt too out of control to decide. I called my foster family who had known me since I was five and fostered me for many years when I was younger during particularly difficult times and continue to support me right up until today. They were overseas at the time and due to arrive back in Cambodia in two days time. My foster mum told me that I couldn’t just stop steroids but I needed to wean myself off them. She explained that coming straight off them could kill me and contacted a doctor and told me what to do. When she got to Cambodia she immediately came to my house. She was horrified as the story unfolded that a team had come and done this without medical expertise, without proper medical supervision. She met with the team and the organization’s leaders to find out what was going on and why they had done this. She spoke with my grandmother and I to find out what we wanted to do. We decided we didn’t want the team involved in my care any longer and wanted to go back to my doctor. She spoke with my doctor who now refused to treat me anymore as he said he couldn’t care for me if other people were going to interfere- he said he couldn’t be responsible for that and that now the damage was so extensive it was beyond his capacity. My foster mum found an expat dermatology specialist at the major international clinic who agreed to take over my treatment and she took me to his clinic for treatment.

My foster family met with the team and told them that my grandmother and I didn’t want their involvement in my care anymore. My foster mum was pretty firm with them and told them they needed to respect the boundaries of the relationship they had with me and respect the other relationships in my life. She told them they could be my friends, but needed to stop trying to be my doctor, stop making decisions about my life that should be made by my grandmother, my doctor and me. She told them that they were undermining the life long support networks that I had in place and making me and my family feel like we were losing control.

Virak’s Foster Mum: Rebecca

I was pretty upset when I first heard what was happening to Virak. This team who were mostly in their late teens, early twenties, who didn’t speak any Khmer, didn’t know Virak’s history and had no medical training assumed they knew what was best for him and took it on themselves to take over his very complicated medical care.

They would call Virak to say they were coming over to his house to do his wound care and Virak would ring me in tears begging me to get there before they did. He told me that when I am not there they get mad when he asks questions they tell him to stop talking so much. They were taking inappropriate photos of him and he had asked them to stop but they refused to listen. He said as time went on they resented him crying at the pain and got aggressive and rough. Virak said that they weren’t game to do any of that when I was there and he was afraid of being with them without me there. I encouraged him to tell them how he felt, but he was worried. He didn’t want to offend them. It is not Cambodian culture to be so direct and confrontational.

The truth is the relationship reflected a power imbalance and he didn’t feel he could speak up to them. He depended on me to do that for him. My husband and I did speak to them along with Virak’s family. They agreed to stop interfering with his medication and leave his medical care to his new doctor. I encouraged them to be his friends and support him that way. Despite this agreement I got a call from Virak two days later saying they had come over and without permission or explanation had once again replaced his medication with something different, taking away his old medication away with them. I got pretty angry at this point and called the team leader. He told me that a dermatologist from the US had already spent thousands of dollars purchasing medication and supplies and brought it over to Cambodia for Virak. I told them that was irrelevant and it didn’t give them any right to interfere against Virak and his family’s wishes. He said he would discuss this with the pastor and team and get back to me with their decision. I was getting very frustrated and challenged him as to why he thought this was their decision to make. They were not doctors, not licensed to practice medicine in Cambodia and not Virak’s guardians. They were a short-term team! Why did they believe these decisions were up to them? I told him that no discussions about Virak’s medical care should take place without Virak and his Grandmother present. He replied saying ‘ They don’t speak enough English and besides’ we have raised money for Virak’s medical care so we will be making the decisions ‘. Needless to say I got pretty mad and the conversation didn’t end too well.

I spoke to the church pastor and leader the next day. They did apologize and reassured me it was unintentional and they just wanted to help. Whilst this is likely true, the whole situation was a horrible case study of young Westerners with good intentions but deep-seated notions of northern superiority, a lack of cultural awareness, a lack of respect for local knowledge and systems who came to ‘save’ poor inferior Cambodians under the banner of a US-based organization that also exemplified these same traits. I have lived and worked in Cambodia for a long-time and seen many Western teams or expats come in with their savior complexes and do things that they are totally unqualified to do and would never consider appropriate in their own country. They don’t seem to think about how dangerous or harmful their actions can be, or how they can exacerbate the very issues they are trying to address. Thankfully not all short-term teams are like that, and there have been some great examples of thoughtful respectful teams over the years.

Despite how horrible this situation was for Virak, this local church has remained a strong support network for him. He has lots of friends there and some of the local Cambodian leaders have been exceptionally good to him. I am glad he didn’t loose those relationships as a result of this experience.

Virak:

The steroids did serious damage to my body and my skin. What started as a wounded foot became open wounds covering 70% of my body. I had to endure 3-hr wound care treatments at the clinic every second day for months on end. The pain was unbearable and strong painkillers weren’t taking the edge off. My skin became so much more fragile than before and many of the wounds were infected. I became very anxious and scared. I didn’t want to live this way, and together with my dermatologist I decided to start a medical care plan that would reduce my immediate pain and speed up the healing, but expose me to some potentially serious long-term risks. I spoke at length with my foster mum and grandmother about this option. At the end of the day, I wanted a life worth living, even if it was destined to be a shorter life. Both my foster mum and my grandmother supported my decision.

I still go to the same local church. The team went home, the relationship with the American pastor was strained for a season, but it is all behind us now. I am grateful for the community and friendships I have there.

I am not telling this story because I am mad, I am telling this story because it needs to be told so future teams can critically reflect on their attitudes and avoid doing harm, even when they are well intentioned.

Speaking as a young Cambodian, we want you to come to exchange ideas and knowledge with us, but know that this means two-way learning and exchange. We want to develop meaningful friendships with you, but we don’t want to be pitied and we don’t need to be saved by you. Jesus is my savior, and I want you to be happy just being my friend.


Virak (Pich) lives in Phnom Penh Cambodia and is currently a student. He is vibrant, witty, and deeply perceptive beyond his years. His positive outlook and determination has been an inspiration to many. He loves God and loves being part of a local church and often serves as a translator for short-term teams. Pich is interested in media and has aspirations to get into music and video production in the future.

Rebecca has spent the last 15 years working in International Development. She is a strong advocate for human rights, and in particular the rights of children living in orphanages . As such she is passionate about deinstitutionalisation, developing family and community based services for vulnerable children and combatting orphanage tourism. Rebecca spent 11 years living in Cambodia and is now based in Melbourne, Australia.

For more on ACCI’s work preserving the family as the best place for the holistic development and care of a child, visit the Kinnected program, which seeks to take a proactive approach to scaling down the use of residential care and assisting children within the context of their families.

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