I have been distracted, lost in a sea of ‘macro’ thought and theory. My ambitions have been based largely on trying to affect ‘the system’ at large. In fact, I believe in many ways over the past week I have lost touch with the reality of the situation. If the faces and lives of those I have met since arriving begin to blend into an indecipherable mass of pain and suffering, it becomes a daunting task indeed to even contemplate any manner of ameliorating daily life. So then, the question becomes how would you, a million miles away from this small town in sub-Saharan Africa have any idea what the truth of the matter is? How would you possibly understand how to affect change if I, in the middle of it all, am also lost?
Let’s take a step closer. Rather than focus on the politics or economics of the situation, let’s look at the faces of who we are trying to empower. Perhaps like Copernicus, we need to reverse the center of gravity; the focal point of change becomes the people, rather than the politics.
There’s Ibra, the kid who wrote “AIDS You a Bad Man.” His parents both died, presumably from AIDS. He lives in a house with his grandmother and eleven other orphans. A 2003 USAID report found that out of nearly 1600 people surveyed, over 53% had taken in orphans. This puts a serious drain on familial resources and severely limits the potential of all children in the family. Orphans are often treated as second-class citizens, neglected as far as food, education, and health needs go, with biological children receiving preference when it comes to distributing these necessities.
Vincent, our next door neighbor is 9 years old and has never been to school in his life because he can’t afford it.
Winnie is one of the volunteers that keeps this program alive and thriving. She wakes up every morning at four to cook porridge for 180 kids who will stop by on their way to school. She does it five days a week, without pay; because she has decided to proactively combat the lack of nutrition and health services in her community.
These are just three people that allow you a glimpse of the trees rather than the forest. My aunt ends each of her emails with a question that sums up her professional efforts; “What if every woman had the power to change the world?” Try to imagine, for a brief second, what the world could be like if these kids and care-givers had a voice in the world. What would the world look like if these were the people in power, making the decisions about war, poverty, and disease? They are, in fact, the majority. The most recent estimates put 43% of the world population living on less than $2 a day. Perhaps policy change is as simple as concentrating on what the least powerful among us would do if they were in power.
Robert Terenzi, Jr.
Thursday, July 26, 2007
Tuesday, July 24, 2007
COLORING THE NAMUGONGO FUND
Over the past month, over 25 individuals have quietly helped Namugongo Fund increase its capacity for allowing children to express themselves through visual arts. As of this writing, over $300 has been pledged to provide art supplies to the program. Thus far, the following has been distributed to the program:5000 colored pencils
210 pens
510 granite pencils
10 “Magic Rub” erasers
10 personal pencil sharpeners
3 classroom quality metal sharpeners
500 index cards
1000 sheets of colored paper
1000 sheets of notebook paper
100 manila file folders for the clinic
120 large sheets of drawing paper
… and there is more to come!
Read more >>
Sunday, July 22, 2007
FIVE WEEKS IN TWO PICTURES
This marks my final week in Uganda. Having interviewed over 350 adults and children over the course of the last five weeks, the data collection aspect of this study has been wonderfully successful. Yet, two pictures have become permanent fixtures in my mind and I find myself inspired, challenged, and disturbed by what they have come to represent. My hope is they do the same for you. – Tim (nfschildren@gmail.com)
PICTURE 1
These pictures are of John in 2003 (pre treatment) and 2007 (taking ARVs) with his toy lion.In 2004, a BBC reporter visited Namugongo Fund for Special Children in order to report on the case of a young boy who was soon to be the next victim of AIDS. When NFSC staff recalls John and his rapidly deteriorating medical condition, they describe a sickly boy with “an odd-shaped head” and “bones sticking out strangely…just an awful situation.” A death sentence seemed inevitable … but three years later he is still alive … with a physical figure resembling more “rollie-pollie” than emaciated.
I first saw the left-hand photo in an album on a shelf at the NFSC clinic. Dated 2003, the pictures was taken when John was about four years old, prior to beginning antiretroviral (ARV) treatment for HIV, a disease he was born with.
Ironically, I first ran into John at the NFSC clinic. I did not know it was him at the time, however. Having been on ARV treatment for the past three years*, John looked nothing like the photograph I had been looking at. Standing in front of me was the boy in the photograph on the right: a seven year old boy in Primary 1, possessing an outgoing personality and playful smile. Everyone seems to know who John is; and everyone who knows John, loves John.
I arrived at John’s home one afternoon and was greeted by his kindhearted grandmother Jjajja. “He’s been suffering from a fever and vomiting these last few days,” she sighed. “A little bit of malaria I think. There was no treatment for him at the [NFSC] clinic, so we transferred him to another one.”
Malaria is painfully familiar to the boy. Two years ago, a serious bout with the illness left him slightly paralyzed on the left side of his body, leaving a painless-yet-awkward limp. “I didn’t know if he will ever walk properly again” said his grandmother as she sat on the front steps of the home.
Nine of Jjajja’s grandchildren live with her in her small home, including John. I wondered how they all fit. “Some sleep two-two-two and some one,” she replied. This figure included two small bedrooms and a dining room which functions as a third bedroom in the evening. “They put their beddings in the rooms during the day,” said Jjajja of the dining room sleeping arrangement.
Jjajja reports that the orphaned grandchildren living with her come from several different mothers and that she’s been taking care of these children “for a long time - some as many as 15 years. John has been off and on at school due to sickness associated with his HIV status. He began ARV treatment three years ago, giving him a new chance at life. “In the beginning he was taking liquid medication and then they changed it to tablets. He no longer gets off and on sickness as often as he used to. They also reduced the number of tablets that he needs to take. It used to be four in the morning and evening but now it is two in the a.m. and two in the p.m.”
Jjajja, John, and the rest of the family receive assistance from NFSC. Along with basic medical treatment, the program provides free breakfast porridge at the breakfast center for John, which is critical as he must receive adequate nutrition in order for his ARV medication to work effectively.
* NFSC partnered with the Joint Clinical Research Centre in May 2006 in order to provide free ARVs to children and families. Prior to this time, NFSC worked with Mild May, a pediatric HIV program, to provide ARVs to children (like John) free of charge.
PICTURE 2
Olivia was following several steps behind me as we made our way out the front door of her small home. We were headed down the dirt road to buy a loaf of bread for her family as a small gesture of thanks for allowing me to visit the home. The interview we just completed with her and her auntie was intensive to say the least, and I left the home with doubts as to whether I would be able to convey everything I had learned and observed into words that would accurately portray the family’s circumstances. In a final effort to capture the conditions before me, the small girl stood in front of my camera as I snapped a picture of her auntie in front of the home, resulting in an image that, for this reporter, has come to symbolize the dire health conditions of the orphans and vulnerable children that I have met over the past several weeks.Olivia is sick. And her telling face does little to mask this fact. She wore a pink shirt with a large white heart in the middle; she also wore the same irritated expression on her face throughout the visit. She had a rash covering most of her exposed body, and as I entered her home the auntie was applying a cream behind her left ear. Her thinning hair, exposing unexplainable sores, looked like that of a person who had experienced unwarranted stressors and trials over the course of a lifetime. At four years old, I did not doubt this to be true about Olivia’s situation as well.
Olivia’s existing medical challenges can largely be traced back to the day she was born. Her mother passed along HIV to her daughter during childbirth and eventually died from the disease. She started receiving services from Namugongo Fund for Special Children when her mother came to the clinic to inquire about treatment in May 2006. When Olivia’s mother passed away, she also passed along her two children to her sister, Gladys, to take care of. The challenges of not only two additional mouths to feed, but two children with complex medical conditions – Olivia with HIV and her older sister with a heart condition - was undoubtedly a challenging time for Gladys. It was around this same time that Gladys’ husband died from the disease as well.
From the time they first came in contact with one another, NFSC has worked to support the family’s challenging circumstances. For a time, Gladys took Olivia to the clinic each morning, and the staff would look after the girl during the day while Gladys continued working to put food on the table for the children. Each evening, Gladys would pick Olivia up from the clinic and take her home. Recently, this arrangement transformed into a paid position for Gladys. She provides janitorial services for the clinic while her neighbors watch Olivia during the day.
Speaking with Gladys, she exudes a resiliency and determination that is difficult to comprehend. “I do not have so many problems,” she told me during the home visit. After learning about her current situation, I am not sure I fully agree. Gladys works as many jobs as she has time for. In addition to her part time work at NFSC, she earns wages through washing her neighbors’ clothing and selling old clothes when she can.
Gladys has two children of her own, a 7 year-old and 13 year-old. The four children and their caretaker stay in a two-room residence. The front room is the common area; the back room is the bedroom for the family. One twin sized bed was in the corner of the room and two pieces of folded foam were folded on the ground.
Gladys reports NFSC being a significant contributor to the well being of her family. “Getting food is the biggest challenge.” The program delivers the ingredients for NFSC’s trademark porridge, and Gladys cooks the porridge for her family at home. “We eat porridge in the morning; sometimes if there is not enough food, we will have porridge in the evening as well.” NFSC provides the family with basic medical support through its main clinic, and through its partnership with JCRC, Olivia receives ARVs free of charge.
Each time I look at Olivia’s picture in front of her home with her Auntie Gladys looking on, I am haunted. Olivia’s knowing eyes pierce my heart, looking deep into my soul. In Western terms, I am holding the hand not of a little girl as much as a health statistic in a developing country. Olivia’s plight is simply the unfortunate outcome of a “know-do gap.” So often we know so much about a problem, but we fail to understand; we fail to get on our knees and look at it through the eyes of a four year old.
So we do nothing.
Read more >>
NFSC IN THE NEWS!!!!!!!
For our last NFSC focus group/music/lunch event, two reporters of the Uganda newspaper Daily Monitor were present. The third page of their Saturday, July 21, 2007 edition features a full-page article and three photographs of the day’s events! The article provides a very descriptive, mostly-accurate account of NFSC, SPARK, and the children of the program.
Click HERE to read the story online in full.
(If the link fails to work, please request a PDF copy of the article at nfschildren@gmail.com)
New Pictures!
"Auntie Beth"
We tend to attract attention...
There is always dancing..
Read more >>Thursday, July 19, 2007
Creative Expressions...
AIDS you’re a bad man…
You killed my mom, you killed my dad,
AIDS you’re a bad man, AIDS you’re a bad man.
You killed my brothers, you killed my sister,
AIDS you’re a bad man, AIDS you’re a bad man.
I had my mom, I had my dad,
AIDS you killed them, AIDS you’re a bad man.
AIDS you leave this world, AIDS you leave this world…
I call upon my friends across the world, to join me in the fight against AIDS.
AIDS you’re a bad man, you’re a bad man.
AIDS you’re a bad man, you’re a bad man.
This song was written by a twelve year old boy that lost both his parents to AIDS. He is one of the eighty children we have been working with at the after school program. We started off the program with a week of introductions, singing, dancing, risk taking, immense laughter, choice making, and as I learned the importance of in my music therapy internship, some serious clinical fun. It wasn’t just the number of children that was initially overwhelming, it was the fact that every single child we met could benefit from this project.
Every child in this program has emotional and psychosocial needs.
Every child has a story to tell.
Every child that sits against a tree with their broken pencil and piece of paper is eager to be a part of something that is hoping to support them in a new way… we have been trying to figure out exactly how to do this in just a few weeks.
Update...
So Lindsey and I have been working with the children in the after school program on a daily basis. We have been singing songs, dancing, playing, talking and having a lot of fun getting to know everyone. Most of the time, I think the kids are laughing with us, and not at us, but even if the laughter is at our expense, it is worth it to see their smiles and hear their giggles.
Lindsey has been making music with the kids and my photography project is well underway. I started by helping the kids brainstorm about their views and lifestyles by asking questions and providing writing prompts. We talked about memory books, and what they might want to include; what they might want other people to know about them. The teachers at the after school centers have been a key component to get the kids to be open and creative.
Today I gave out 20 disposable cameras, and gave a quick photography lesson. The kids could not believe that they each got their own camera, and I was equally excited to send them off to record this setting from their perspective. I can’t wait to see their work next week. When they return the cameras I will develop the film and I hope to display the work for the community in the next couple of weeks.
Read more >>Monday, July 16, 2007
Recent events have pushed me to contemplate the concept of truth. How possible is it to arrive at what we refer to as ‘the truth?’ We now have access to thousands of news sources, websites, and can delve into even the most private aspects of our friends’, families’, and even complete strangers’ lives. And yet, are we any closer today than at any other point of actually discovering what makes up ‘the truth’ of our existence?
Voices, stories, even real time reporting often contradict itself, leaving us on the outside with an uneasy sense of confusion about what is actually true. We are inclined towards biases, leaning towards the voices that grab our ear first, the most dramatic, even the most scandalous. Ultimately, it seems that there is only experience; and from the collected experiences of our lives we form a base set of principles and evidence on which to base our decisions between truth and deception when that dichotomy presents itself.
It is said that history is written by the victors. Despite access to a wide variety of voices, that seems truer today than ever. Economic growth is measured by the overall strength of a nation’s economy. That data outrageously ignores the growing distance between the upper and lower classes. Despite a multitudinous cry for reform, the World Bank and other international money lending firms are derailing attention away from the increasingly downtrodden conditions the impoverished are subjected to.
Let us heed the words of the 2006 Nobel Peace Prize winner, Muhammad Yunus to change the way we measure the health and strength of a national economy. Growth should be measured by the change in health and finances of the lower 50% of the population on the economic scale. The upper half does not need to grow anymore to stay healthy. Because a majority of trade that makes up the economy of the poor is in the informal sector (outside the realm of taxation, and therefore largely immeasurable), health indicators (i.e. infant mortality, rate of HIV infection, life expectancy) become the only reliable means of calculating real change for this portion of society. The fact is that it is a significant portion; nearly 50% of the world’s population lives on less than $2 a day. How is it that when we hear ‘the truth’ about India, China, or America’s economic surge, those who have no power individually are conveniently left out of the rosy picture portrayed by the media?
We are years away from accurately representing the plight of the impecunious. Despite a constant influx of media and information, we are, as a population, left in the dark when it comes to the poor. India’s economy grew at a rate of 9% this year; sounds pretty good, yet infant mortality and other health statistics remained largely unchanged if not worse than previous years. So the economic growth was concentrated at the top, because improved economic welfare equals improved access to health services.
Ultimately, it may seem impossible to come to a consensus on the truth of anything, including world poverty. However, there are ways to understand real growth in a nation and as our understanding of poverty continues to grow; it seems that health indicators are quickly becoming the only way to uncover and address the needs of those in the direst set of circumstances.
For further reading check out; Banker to the Poor by Muhammad Yunus, The End of Poverty by Jeffery Sachs, and Dying for Growth edited by Jim Kim.
Robert
Recent events have pushed me to contemplate the concept of truth. How possible is it to arrive at what we refer to as ‘the truth?’ We now have access to thousands of news sources, websites, and can delve into even the most private aspects of our friends’, families’, and even complete strangers’ lives. And yet, are we any closer today than at any other point of actually discovering what makes up ‘the truth’ of our existence?
Voices, stories, even real time reporting often contradict itself, leaving us on the outside with an uneasy sense of confusion about what is actually true. We are inclined towards biases, leaning towards the voices that grab our ear first, the most dramatic, even the most scandalous. Ultimately, it seems that there is only experience; and from the collected experiences of our lives we form a base set of principles and evidence on which to base our decisions between truth and deception when that dichotomy presents itself.
It is said that history is written by the victors. Despite access to a wide variety of voices, that seems truer today than ever. Economic growth is measured by the overall strength of a nation’s economy. That data outrageously ignores the growing distance between the upper and lower classes. Despite a multitudinous cry for reform, the World Bank and other international money lending firms are derailing attention away from the increasingly downtrodden conditions the impoverished are subjected to.
Let us heed the words of the 2006 Nobel Peace Prize winner, Muhammad Yunus to change the way we measure the health and strength of a national economy. Growth should be measured by the change in health and finances of the lower 50% of the population on the economic scale. The upper half does not need to grow anymore to stay healthy. Because a majority of trade that makes up the economy of the poor is in the informal sector (outside the realm of taxation, and therefore largely immeasurable), health indicators (i.e. infant mortality, rate of HIV infection, life expectancy) become the only reliable means of calculating real change for this portion of society. The fact is that it is a significant portion; nearly 50% of the world’s population lives on less than $2 a day. How is it that when we hear ‘the truth’ about India, China, or America’s economic surge, those who have no power individually are conveniently left out of the rosy picture portrayed by the media?
We are years away from accurately representing the plight of the impecunious. Despite a constant influx of media and information, we are, as a population, left in the dark when it comes to the poor. India’s economy grew at a rate of 9% this year; sounds pretty good, yet infant mortality and other health statistics remained largely unchanged if not worse than previous years. So the economic growth was concentrated at the top, because improved economic welfare equals improved access to health services.
Ultimately, it may seem impossible to come to a consensus on the truth of anything, including world poverty. However, there are ways to understand real growth in a nation and as our understanding of poverty continues to grow; it seems that health indicators are quickly becoming the only way to uncover and address the needs of those in the direst set of circumstances.
For further reading check out; Banker to the Poor by Muhammad Yunus, The End of Poverty by Jeffery Sachs, and Dying for Growth edited by Jim Kim.
Robert
Sunday, July 15, 2007
A few pictures, a few thousand words...
Mission accomplished: Hundreds of children and their guardians provided their valuable insight. Below are the group of 16 facilitators standing proudly with their hard-earned certificates.
Victor. A budding artist.p.s. Thanks for contributing colors to these children's lives (you know who you are)
Lindsey, Rob, and Beth leading children in song at Breakfast Center C: Kira
Friday, July 13, 2007
July 14, 2007
It has been just about a week since we arrived in Kimbejja, our new home for the next weeks. While we are still acclimating, our time so far has already been an adventure. From the evening Beth and I spent eating the most delicious houmus and tabouli I have ever tasted in Dubai, to the four hour long journey through various street side markets in Kyaliwajjala, Banda, Kireka, and Kampala, every day has been memorable.
My thoughts continue to bounce from one issue to another; experiencing and understanding the culture, witnessing the impact of AIDS on children who have been orphaned, music, poverty, education, art, perseverance, porridge, respect, school fees, shoes, dancing… Currently, my thoughts have been focused on the role of music and creative arts interventions/activities in the AIDS epidemic, here in Uganda.
Right now, the house we are staying at has been converted to the bi-weekly HIV/AIDS clinic for the children and caregivers of the Namugongo community, funded by an initiative of the USAID Joint Clinical Research Center. Before coming to Uganda, most of the reading I did praised this country for its decrease in HIV rates through education campaigns, stigma reducing media and the availability of resources. In the short time we have been here, I am experiencing the effects of such efforts. Coming from the US, where it is often taboo to talk about HIV and AIDS with children, I found myself having to adjust to the environment here, where schools have posters on walls and signs in the ground with such sayings as “There is no cure of AIDS,” “AIDS can kill, take your medication every day,” “Having sex with a virgin won’t cure your AIDS, leave the children alone,” and “Abstain from premarital sex.”
At first, I found myself hesitating before talking about HIV/AIDS and music, wondering what was “appropriate” (something that is always in your mind when working with children in the states). Yet, it is pretty clear how educated and aware the children of the Namugongo Fund of HIV/AIDS, as well as other pertinent issues: education, corruption, and poverty. They speak freely and openly about the realities of life for them in Uganda, uncensored and authentically, often using music and dance to share the messages.
Our first experience with the kids, at Tim’s focus group, we were introduced to Super Charger, a Ugandan pop musician, who lives positively with HIV and educates the children through his lyrics. His songs, which are extremely well known to children and adults, not only bring a room full of moms, grand-moms and aunties to their feet, they educate about making appropriate choices, being faithful to your partner, and the disease itself. To me, this is like magic. Super Charger has taken his life experience, his passion, and talent, and used it address one of the country’s most pressing issues. It’s just amazing. The children sing and dance to quite a range of messages, and left me with one song…
I sing because I’m able
I will sing again tomorrow
I will make myself a better morrow
I have hope and faith for tomorrow
Lindsey
There are brilliant, shining, palpable moments of joy and optimism every day. Whether it is the smile of a stranger, a decidedly witty comment, or just getting up in time for the sunrise, every day is filled with tiny moments that make our time feel a bit lighter than it might otherwise. Above all, the greetings we receive walking to and from work are without parallel.
I have never felt so warmly received in my life. No matter what time of day I leave the house, I am greeted by a thousand smiling faces. Cheers, waves, and unabashed enthusiasm mark seemingly every encounter. Like white gold dropped along the red earthen path, smiles of children and adults alike enrich our leisurely commute in town.
The welcome is assuredly open-armed and full-hearted. I have not seen another white person in the area since my arrival, so our skin color is certainly a novelty as well as a reason for the attention lavished upon us. Children announce our presence with song, thanking us for visiting, and telling us to come back tomorrow when we finish.
A step further, we are obviously not your standard tourists. In fact, I would say the annual tourist population to this part of Uganda is somewhere in the vicinity of zero. So then, what does it mean to be a white person in this part of Africa? I think it inherently signifies a social contribution. We have been here for a while now; interacting with children, community leaders, care-givers, teachers, and nurses on a daily basis. Our efforts, I think, have become known to the town and I believe that much of their excitement is that they acknowledge our work and are grateful for it.
Deeper still, I imagine a bit of wonder that we, a group of young Americans, have somehow stumbled upon this oft-forgot corner of the world. This is a hidden part of sub-Saharan Africa where men, women, and children have been dying from a horrific disease for more than twenty years; where incomes have plateaued to a point just below the amount needed to survive; where starvation, unemployment, and death are the norm; and where foreign aid is still years, and miles away from reaching here. Although it doesn’t have the desolate qualities of an abyss, economically there is little other way to describe it. Perhaps their unequivocal enthusiasm is as simple as pure amazement that someone has realized they exist.
Kiob (Robert)
Thursday, July 12, 2007
Our team has been in Uganda for almost an entire week now. Rob, Lindsey and I (Beth) are getting to know the lay of the land, and have begun our work in music and art with the children served by the Namugongo Fund for Special Children. We have spent our mornings traveling to the various breakfast centers in the morning, meeting and connecting with the kids and making contacts with the volunteers. In the afternoons we return to the centers and work toward our goals of building relationships with the children, learning about their situation and helping them find a safe way to express all that is happening in their lives through music and art. The kids are incredibly enthusiastic and beautiful, and their caregivers welcoming and warm.
I am still formulating my personal feelings and reactions to all that surrounds me, so for now I will let you read the impressions of my fellow travelers.
-Bess (Beth)
Many Voices, One Song: Week One
How can I begin to describe my first week in Uganda? It has been both surreal and too real. A combination of a “Save the Children” commercial and the most intense applied-learning economics class imaginable. I have held hands with more children this week than I have in the past ten years, and every time, I feel a surge of hope, a slight pressure of expectation, and a reinvigorating sense of responsibility and duty.
Waking up in the morning and stepping out under a lavender sky and the silver sliver of a crescent moon, I try to mentally prepare myself for our visit to one of the five breakfast centers that Namugongo funds. Beth, Lindsey, Nakato and I begin our walk down the red clay paths, into the cool and damp air. The village is still sleeping. An orange sherbet glow gradually grows out of the east corner of the sky beginning its slow westward mélange with the soft purple of fading night; creating the light blue that will govern today.
Is it strange to say that this feels like a sacred mission? As figures appear along the amber road, emerging from the fog, I am overcome by a strange desire to pray. Men on bicycles with large bundles of sticks push their heavy loads up steep, unpaved hills. It is 5:30 in the morning and a heavy air hangs around us. The vegetation is lush, green, and tropical.
As we arrive at the breakfast center, a series of entirely unfamiliar interactions commence. Ugandans have a tradition of kneeling in front of a respected visitor in order to introduce themselves. A parade of sleepy-eyed and yet eager children, ranging from 6-12 begin this practice of reception. It is discomfiting to have a small child kneel to you, and it takes getting used to. Every time, I feel like I should be the one kneeling, for being partially responsible for the vastly unequal divide of wealth and resources that forces the crushing weight of poverty and illness on their shoulders.
The breakfast center caters to close to 200 children every morning. It is one of five in this network and effectively serves every child a cup of hot porridge to start their day. It is an important service since most children would go without any nourishment until the evening on account of lack of familial resources.
That afternoon, we return for a session of music therapy led by Lindsey and Beth. This is an uplifting and enriching time; where laughter, singing, dancing and energy overflow the container which we are working in. Still, at the end of the day, I feel an intense pressure to change the system; to figure it out, to come up with some panacea for paucity and indigence that will address everything from health, to education, to individual empowerment. In many ways, I feel useless, even guilty; and that heaviness translates itself into an earnest, if not impractical attempt to radically improve quotidian life for the people I have met since arriving.
The psychosocial needs of these kids are not being met. Their basic nutritional needs are, at best, on shaky ground. The economic condition of their care-givers is, most-often, dire. And worse than that, the entire world is blind to the tragedy. We are blind to the fact that these kids exist; blind to the fact that besides being in constant physical jeopardy, their mental health is under constant attack by the isolation, desperation, and stigmatization caused by HIV/AIDS.
-Kiob (Robert)
Thursday, July 5, 2007
Center D Breakfast Program: Bulindo
It is 6am, and other than the cows and goats, the only signs of life our small headlight is able to catch in the darkness is the occasional face of a child making his and her daily trek to school. We head down this road for a time that was difficult to determine. While I was still half asleep, my mind racing as it was quickly calculating the fairly good odds of hitting a large pothole and being thrown into several different directions.
We were dropped off at Mother Care Primary School. While Breakfast Centers B and C had friendly signs, no Center D had no such greeting. As it turned out, perhaps this was the least of their concerns, as we soon discovered that the center exists in the absence of a sheltered container.
Winnie runs Center D. She appears to be in her mid to late 20s, and upon moving to the area several years ago, she had discovered the plight of orphans and vulnerable children in her area who suffering from hunger, disease, and mistreatment. Winnie and her husband began Breakfast Center D in May 2006 by cooking porridge in a small brick room connected to her home.
Initially Winnie reported to the program “about each new child whom I thought should enter the program, but after a while they just gave me a list to complete because there were just so many orphans that needed breakfast …”
From the current resources in place, it appears the center could handle the 60 children Winnie said the program began with. “We have 60 cups and that was fine when we served porridge to 60 children. Now we have 193 children and we still have 60 cups.” Consequently, when the first children arrive at the center for porridge, some as early as 5:45am, they take their porridge, and then quickly rinse out their cup so that another child may use the cup for their porridge, opening up the possibility of spreading sickness.
Six small wooden benches are provided for children to sit on. While the 193 taking porridge are staggered throughout the morning, at any given time there is often not enough seats for children, and several were observed sitting in the dirt in order to drink their porridge. This is to speak nothing of what this unsheltered center does when it rains.
Over the course of the morning, I met a small boy, “J,” whom I had noticed walking to the center with a young woman who could have easily been his sister or mother. I introduced myself to the pair, and she confirmed that she was, in fact, the mother to the five-year old J.
Throughout the visits to the breakfast centers, most of the children were at least slightly intrigued by the attendance a white person visiting the center. Their eyes express a curious interest in who this obvious outsider was. J’s eyes were different. As he sat with his mother in silence, J had a blank, glazed over stare that did not speak “tired” as much as “sick.” When I asked him his name, his whispered reply was so faint I question whether he heard it himself. He appeared undernourished, his protruding knee joints seeming to not fit the rest of his smaller frame. After I had made introductions with J and his mother, I went about meeting some of the other kids … when I heard a coughing and turned around to see the tiny frame of J hunched over, his mother at his side, coughing and puking out all the porridge his small body had just taken in. I turned to Winnie the volunteer. “Malaria,” she sighed.
Treading water in an ocean without the sight of shore
After school program
It had rained heavily prior to start of the after school program held at Center C. I had spoken with the one of the center’s after school volunteers earlier that day. He invited me to visit the program but cautioned that the rainy conditions would likely deter children from coming. Similar to the center’s breakfast program, children are often left with a difficult choice on rainy days: venture out into the cold downpour (often without shoes) or to stay home where they will be dry … and remain hungry.
The program has a reported starting time of 3pm. Keeping with Ugandan culture norms, I arrived “early” at 4:15 to find three children waiting for the program to begin. While we were waiting for others to arrive, the children and I had a paper airplane throwing contest until the volunteer arrived at around 5pm. He explained that the program takes place each day, Monday through Friday within the container that houses the breakfast program. The volunteer works to assist children with their homework from grades Primary 1 through Primary 7, where he assists in helping children study all subjects from English to algebra to learning numbers and letters. With the wide age range of children, the volunteer explained that he typically begins helping the older grade levels by setting them up with some homework problems relevant to their current studies and then helps them answers questions. He systematically works down to grades Primary 1, and then checks in with the older children again.
While attendance is taken, children voluntarily attend their after school program to receive additional help with their homework. At school, classroom sizes are impersonally large, and the volunteer commented that the NFSC after school program provides a chance for a child to receive some genuine one-on-one help from the volunteer, something rarely afforded in the context of a government sponsored Universal Primary Education (UPE) school. A quick head count revealed that 20 children had arrived by the time the volunteer arrived (most without shoes), despite the drizzly and muddy conditions. I commented on the surprisingly large number of children who showed up to work on homework, and he shrugged, “This was small. I normally work with thirty.”
In terms of the availability of physical materials, the program appeared to have an adequate paper supply today, but they lacked nearly everything else. Children brought their own pencils to the session, most of which were “pinky length” and quite dull. Also, most children did not have worksheets or things of that nature; rather, the volunteer would create a handwritten page of math problems, for example, and in the absence of a photocopy machine, the children performed this function by gathering around to copy the problems onto their own sheet of paper. As the hours passed, the children continued to work diligently on their English, math, and science homework, striving to subsidize what is often an insufficient education. With one small window, the light in Center C gradually faded with the sun. It was time to go home.
Monday, July 2, 2007
Focus Groups!!!
(Pictures will be posted soon …) The morning before the community event for Center C, all focus group facilitators (FGFs) gathered in the NFSC clinic office to review the scripts and procedures for the day. It was the first time that all 17 FGFs had the opportunity to meet at the same time. All in all, there were twelve women and five men, all in their mid-twenties and looking to boost up their human services experience. I was most struck by one young FGF I met during a community meeting the first week I was here. "A" has a genuine pleasantness about him, a natural skill that would seemingly make him a given for a service agency, particularly since he has a related degree from one of Uganda's finest universities. However, A said that such paid jobs in Uganda are very difficult to come by, and as a result he has been volunteering for a respected NGO for the past two years. He said he was excited by the opportunity to be part of this short-term research team as a focus group facilitator. I found great admiration in A's commitment to helping vulnerable groups in his home country. This admiration was amplified when this man, who is younger than I am, told me he attended his father's funeral … yesterday.
Jesca, an FGF (and this reporter's translator), reviewed the slightly revised parent and child focus group scripts aloud in Luganda, and several important questions were answered and clarifications made. The purpose and implications of informed consent were reviewed, particularly the rights and protections provided to all participants. The training concluded with a brief mock focus group to demonstrate what a group may look like.
At about 10:40am the 17 FGFs and this reporter piled into a 14-seat taxi van towards Kira Primary School for the event, scheduled to start at 11. We arrived ten minutes before the event was scheduled to start and found the school virtually empty: one grandmother and her grandson were present, and the music system had just arrived. No one seemed too concerned, as a casual starting time is quite common in Uganda.
The purpose of the community event was to gather information from children and caregivers of NFSC's "Center C" breakfast site in order to gain further insight into the vulnerable children and families whom NFSC serves. The focus groups used to collect this information were merely one activity in a full day, however. Other activities included
- Rosette providing an introduction and Tim describing SPARK/CAP, its partnership with NFSC, and the purpose of this study (including informed consent)
- An impromptu Q&A time with Tim about the differences between the USA and Uganda
- A local radio personality known to the children as "Supercharger" performed songs and dances related to HIV/AIDS, testing, and the importance of antiretroviral medication. He is a hero to the children; he is also living with the virus
- A lunch of rice, cabbage, beans, grilled beef, and soda served by NFSC volunteers
By 12:15pm, a respectable number of guardians and children had arrived. We had trying to delay our opening so that Supercharger's technical support crew could blast some music in order to attract more children, but apparently there were some difficulties with the sound equipment and the generator (The school where these children attend does not have electricity.) It was decided that the program must begin. Throughout the day's events, key observations included:
Informed consent. Informed consent provides a prospective research participant ( i.e. a focus group member) with vital information about the study including explaining the purpose and background of the study, informing them of potential risks of participation, confidentiality, as well as their rights as a participant. This information was communicated to the guardians and their children in their local language. Guardians were requested to physically move beside their child, and to raise their hand if the consented to their child (as well as themselves) participating in a group. Children for whom their guardian's assent had been granted were moved to a nearby classroom where they were divided into five small groups with respect to age and grade level. Guardians remained in the larger classroom and were split into three groups.
Focus group observations. Several FGFs were assigned to split the groups of children by age. During this process, several were found to be less than eight years of age (the cutoff for this project). These children were led back into the main room to play. A total of 49 children participated in 5 focus groups, while 29 guardians composed 3 focus groups. Each group was assigned two FGFs responsible for facilitating a discussion by asking the scripted questions and recording participant's responses anonymously (on paper and with a tape recorder). While it had rained violently very early that morning, the sun was out and the ground was dry enough that all but one of the guardian and children's focus groups occurred under the shade of large trees scattered on the school grounds. Both participants and FGFs appeared engaged in their respective tasks at hand. Groups lasted between 45 and 75 minutes each, and most FGFs appeared to facilitate an intimate environment for sharing important (and sometimes sensitive) information.
