A Father's Battle to Protect His Children A Ugandan man heroine story to protect his children who have Albinism
Uganda: 'When my first son with albinism was born...I didn't know what to think, but I immediately decided to love him.'
Kampala, Uganda - In Kampala, the city of seven hills, the traffic lanes are filled with 14-seat taxis and boda boda motorcycle taxis. The buzz of the city never slows no matter the time of night or day.
But just four hours north of Uganda's capital city, time moves more slowly. Banana trees replace the streetlights, and the red African soil takes over from the tar-covered city roads.
The boda boda bike takes a slow, bumpy journey through the green landscape of the countryside towards the village.
Mwanje was born here and the piece of land he owns has been in his family for generations. His father is buried just 10 metres away from the round, grass-roofed hut he inherited from his father.
He lives with his two wives, Lynda and Florence, and their eight children, who range in age from five months to 13 years. They grow sweet potato and cassava, and after a one-hour trek along small trails in the deep jungle, they buy fresh fish from the small boats that have been out on the lake before sunrise.
Theirs is a typical family in this part of Uganda but for one thing: Five of the seven children Mwanje had with Florence were born with albinism, a rare genetic condition where the body is unable, or is limited in its ability to produce melanin, the substance responsible for the coloring in skin, hair and eyes.
"My first reaction when my first son with albinism was born was just shock. I didn't know what to think, but I immediately decided to love him. He was our son," says Mwanje.
But in many families this is not the case. Some keep their children inside all the time, afraid of what neighbors might say, or because they lack knowledge about how to care for a child with albinism.
Often, the men choose to leave their wives as soon as the baby is born, arguing that it is not their child.
"There are rumors about me and my family. One is that I laughed at a person with albinism when I was young and he put a curse on me, that's why I give birth to these kind of children," says Florence.
Living in fear
The myths about albinism in East Africa are many, and they vary between countries, but the general perception of the skin condition remains the same.
It is said that a person with albinism holds great power in their body and that if you give a limb to a witch-doctor he will make you rich. It is also believed that they are in fact ghosts and not human.
In countries such as Tanzania and Malawi, countless people with albinism have been attacked, and had their arms or legs chopped off with machetes. Many are reported missing. They live in constant fear of falling victim to someone's greed for gold.
The situation is not as bad in Uganda, but the daily discrimination and lack of support from the government still makes life very hard.
In school many children with albinism are bullied and fellow classmates refuse to sit next to them. An inability to see well, which afflicts many with albinism, becomes a major handicap in the classroom. When combined with the usual challenges of getting a good education while attending the local village school, which lacks essential facilities such as books, pens and other supplies, this proves disheartening for the children and their parents.
"I wanted my children to get a good education so they could change their lives, so in the beginning I sent them to a school in the nearby town. But it's quite a distance to travel there, and I was so worried that someone would try to kidnap or hurt them. I could never forgive myself if that happened, so I told them to attend the local school instead," says Mwanje.
A couple of years ago, one such incident shocked the whole family.
Robert, the oldest child with albinism, and two of his friends were playing in the rice fields. The sun went down over the hill in the distance but they continued playing. Suddenly, they noticed a man hiding by the far end of the field. A silence descended, then the man rushed towards the children, and in panic, they split up and ran in different directions.
Robert ran one way, and his friends another. The mysterious man chased after him. But when all the children screamed loudly to attract attention, he eventually ran off.
Until this day, they have no idea who he was, or what he was doing there. But they all suspect that he wanted to kidnap one of the children with albinism.
Since then, Mwanje stays on the land most of the time to protect them.
The days pass in the same way for the family. They wake up as the rooster begins to crow in the morning. Everyone takes a cold bath, then the children line up and Mwanje or Florence apply the strongest sun protection cream they can buy.
They make sure that not a single drop falls into the sand at their feet. For this family in rural Uganda, the SPF cream is like a bottle of gold, a luxury they can't afford to waste.
The children put on their old, worn-out hats and run barefoot, in a straight line down the path that leads to the large, green rice field, where they spend most of their day. They play, laugh, scream and cry.
Florence sits on the ground in her shinning red dress, singing a traditional song as she cuts the cassava. Fresh fish slowly turns crispy and brown over the fire beside her.
After dinner the family gathers, stretched out on the two tree matts Mwanje built. The food makes their bellies full, and their eyes heavy as a slow wind blows through the village. Here, surrounded by family and with their father keeping a protective watch over them, they feel safe.
The giant mango tree above them keeps the sun, their worst enemy, away from their fragile skin.
Source: Al Jazeera
I ran across this short film today called "Sunflower". It was real, touching, & straight to the point "Sunflower originally came out in 2014 I wish I found it sooner it really deserves more hype. All I can say is keep the Kleenex near by cause you will certainly shed a tear (Tears of joy). I hope you all enjoy & can use this to relate. After you let me know what you think
This is sort of an old Doc. but when I first saw this one I think I was about 18. It made me feel some type away to here my condition Albinism talk about like it was some horrific thing that made people have to feel pity for me. Now that I am older I realize somewhat that maybe they this documentary like this to get more people to pay attention, but you be the judge & comment
For the month of July I will be posting different documentaries about Albinism and conditions like it. Maybe you've seen it maybe you haven't, but my purpose is to get a conversation started & to help people understand.
I believe there is good & bad in this world. Somethings just should not be hiding or sugar coated any more. If you haven't seen this documentary I suggest you do. This is the reality for some (NOT ALL). Hopefully this will help reveal whats truly going on because I know people don't just go searching for these documentaries.
By KAREN KAPLAN
The long-term effects of being bullied by other kids are worse than being abused by an adult, new research shows.
Among a large group of children in England, those who were bullied were 60% more likely to have mental health problems as adults than were those who suffered physical, emotional or sexual abuse. And among a large group of children in the United States, the risk of mental health problems was nearly four times greater for victims of bullying than for victims of child abuse.
The findings, published Tuesday in the journal Lancet Psychiatry, underscore the need to take bullying more seriously as a public health problem.
“Being bullied has similar and in some cases worse long-term adverse effects on young adults’ mental health than being maltreated,” the study authors wrote. “Governmental efforts have focused almost exclusively on public policy to address family maltreatment; much less attention and resources [have] been paid to bullying. … This imbalance requires attention.”
Previous studies have shown that children who are abused by adults or victimized by their peers grow up to suffer higher rates of depression, anxiety and suicidal ideation, among other problems. Both are bad, but the researchers wanted to know which was worse.
So they mined two large, long-term studies involving thousands of children. Both studies included data about child abuse and bullying. They also had information about the kids’ mental health as teens and adults.
Among 4,026 children who participated in the Avon Longitudinal Study of Parents and Children in England, 8% were victims of child abuse only, 30% were victims of bullying only and 7% were exposed to both. For the 1,273 children who were part of the Great Smoky Mountains Study in North Carolina, 15% were victims of child abuse only, 16% were only bullied and 10% suffered both.
As they assessed the risks of mental health problems, the researchers controlled for gender, family instability or adversity, socioeconomic status and other factors that might influence the link between maltreatment and mental health. A history of child abuse was associated with a greater risk of mental health problems as an adult for the American children, but not for their English counterparts. However, children in both countries were more likely to have mental health problems if they had been bullied.
Overall, the effects of bullying were worse. For instance, the English children who were bullied were 70% more likely to experience depression or practice some form of self-harm than were children who suffered child abuse. The American children were nearly five times more likely to be diagnosed with anxiety if they were bullied than if they were abused.
The researchers also discovered that among both groups of kids, about 40% of those who were abused by adults were also bullied by other kids. The reasons for this aren’t clear, but it’s possible that a history of abuse makes it hard for children to regulate their emotions, “which might make them more susceptible to being bullied,” the study authors wrote.
Courtesy of L.A. Times
WRITTEN BY MR HARRY FREELAND, 2006.
Alfred sits in the front seat of the car. His dark shades make him appear ten years younger than he is. He heckles and shouts out at people as we drive past them, cracking jokes and amusing us with his infectious laughter. Although often serious in his tone, it is not uncommon for Alfred to belch half way through a sentence and carry on as if nothing had happened.
Alfred Kapole is 44 years old. He has a non-Albino wife, Sikuzania A. Kapole age 25 and two non-Albino children, Judith A. Kapole aged 10 and Passikazia A. Kapole aged 3.
Alfred is the chairman of the Ukerewe Albino society. Proud of his duties, he cycles for miles from his home in a remote part of the island to attend any necessary society meetings in the main town of Ukerewe, Nansio.
Alfred has a rare gift of being able to break down all language barriers, encouraging communication with a simple laugh or a smile. This natural ability was not only helpful to our communication, but when entering villages where some people reacted badly to the survey or our presence his reaction was so effective when calming the situation. When conducting the survey Alfred appeared to come into his own once counseling others, sharing his own experiences, listening to theirs and making people realize they were not alone.
Alfred is in great health for an African Albino of his age. He is the oldest Albino we know of on the island and lives life extremely positively. Recently I heard Alfred had been asked to become the chairman of the Mwanza albino society on mainland Tanzania. This will be a great honor for Alfred, although I hope he doesn't abandon his duties at home.
VEDASTUS ZANGULE: EACH DAY CHILDREN LINE UP FOR MORNING ASSEMBLY BEFORE ENTERING THEIR CLASSROOMS. THEY CHANT AND DANCE TO A RIGID DRUMBEAT, BRINGING THE SCHOOL TOGETHER AS A UNIT. WHEN VEDA LINES UP THE OTHER CHILDREN IMMEDIATELY PUSH HIM OUT. HE WALKS TO ANOTHER LINE, ONLY TO ONCE AGAIN BE PUSHED OUT AND REJECTED. HE TRIES ANOTHER, AND ANOTHER. UNTIL FINALLY, DEFEATED, HE WALKS HOME. WHEN KIDS IN THE VILLAGE GO FISHING THEY TELL VEDA TO COME WITH THEM, IN CASE THEIR BOAT SINKS THEY CAN CLIMB ON HIS BACK TO PREVENT THEMSELVES FROM DROWNING. IN VEDAS VILLAGE IT IS A BELIEF THAT ALBINOS FLOAT ON WATER. THIS YOUNG BOY DEEPLY AFFECTED US AND WAS THE MOST DIFFICULT CHARACTER TO LEAVE BEHIND. HE SAT IN FRONT OF US AS A CHILD, BUT TOLD HIS STORY AS MATURELY AND AS POETICALLY AS IF HE WERE A GROWN MAN. HE SPOKE CLEARLY AND EMOTIONALLY ABOUT HIS LIFE, FROM THE TIGHTNESS OF HIS SKIN TO THE VERBAL AND PHYSICAL ABUSE HE RECEIVES DAY AFTER DAY. HIS STORY IS A VITAL ONE AND ON TOP OF THIS DAILY STRUGGLE, VEDA'S MOTHER IS DYING OF AIDS. HE WILL SOON JOIN THE MANY OTHER AIDS ORPHANS SUFFERING ACROSS AFRICA.