In March 2012, American filmmakers brought the world to northern Uganda in search of a warlord named Joseph Kony. One month later, Ugandan doctors and journalists are scrambling to broadcast a revised global message: Mr. Kony is gone, and nodding disease now poses the largest threat to the region’s children.
So far, this second message has failed to generate the same level of worldwide buzz as the first.
Kony2012, a mini-doc about the warlord Joseph Kony’s barbaric crusade across the African nation of Uganda, has been viewed more than 100 million times since its March 5 debut, and that is just the combined total for YouTube and Vimeo.
The video was released by Invisible Children, a San Diego-based non-profit organization founded in 2004. Social media immediately devoured the clip, and within days Mr. Kony was vilified on a worldwide level.
But as soon as the viral campaign kicked off, critics began to speak out against the video’s outdated message.
Though Invisible Children presents Mr. Kony as a current threat to Ugandan welfare, many noted that he fled the nation years ago, and is thought to be presently hiding out in the Central African Republic.
Others argued that the size of Mr. Kony’s rebel faction, the Lord’s Resistance Army, had been distorted. Though the LRA is believed to have once numbered in the tens of thousands, the United States Department of State recently estimated that the group currently consists of 150-200 core fighters.
The harshest criticism leveled against Invisible Children was that the group manipulated figures related to atrocities against children.
The LRA is known to employ minors as both soldiers and under-age sex slaves, and Kony2012 states that as many as 30,000 child soldiers are still used by the LRA today. However, many experts have pointed out that this is the estimated total number of child soldiers used by the army since 1986—and not a current figure.
Kony2012 suffered from this critical backlash. Two weeks later, the movement was further tarnished when Invisible Children co-founder and Kony2012 filmmaker Jason Russell was featured in another video that, simply put, questioned his overall credibility.
Most sites—including YouTube—have disabled video access to Kony2012 at this time, though it is still available on Vimeo.
Invisible Children remains undeterred in its goal to bring Mr. Kony to justice. On April 20, the organization will kick off “Cover the Night,” a campaign that aims to spread awareness about the LRA through community service projects and political activism.
As the world reeled from the Kony2012 debacle, Uganda disappeared from the global headlines. Today, Jackee Budesta Batanda — one of the first Kony2012 dissidents — is using social media to call attention to a serious, very real issue facing children in Northern Uganda today.
Four days after the video first appeared, Ms. Batanda, a reporter for Global Press Institute, wrote a blog post titled “The Real Battle in Uganda.”
The subject of her piece was nodding disease: a bizarre form of epilepsy that has affected roughly 3,000 children in Northern Uganda. It is this condition — and not the LRA — that poses the largest current threat to that region’s young population, she says.
“While the guns have gone silent, people are still fighting battles as a legacy of the conflict — land wrangles, forced displacement caused by investors, diseases like HIV/AIDS and nodding disease among others,” Ms. Batanda says. “Therefore, Invisible Children was selling a conflict that no longer exists in Uganda to gullible American young adults who have no sense of the real situation on the ground.”
Ms. Batanda, a reporter for Global Press Institute, is not your ordinary Ugandan journalist. In 2010, she received Uganda’s Young Achievers Award and a Justice in Africa fellowship. She was recently honored as a 2011-12 Elizabeth Neuffer Fellow. The fellowship allowed her to take classes at MIT, Harvard and Boston University, and intern at The New York Times and The Boston Globe.
In the past, Ms. Batanda reported on other issues in her home country, such as government corruption, female victims of acid attacks and limited rights for homosexuals. Her latest crusade is getting the word out about nodding disease.
Nodding disease earned its name from the violent nature of the disease’s seizures, which can cause the victim’s head to bob uncontrollably. Children affected by the disease suffer from permanently stunted growth, and mental deterioration caused by the disease can lead to developmental disabilities. The seizures often manifest during meal times, so many young victims also develop a strong aversion to eating.
In 2004, neurotoxicologist Peter Spencer told CBS News that nodding disease was fatal, with an average duration of three years or more. However, of the more than 170 Ugandan casualties from nodding disease, most have died from head injuries sustained from falls caused by the seizures.
The disease first appeared in Sudan in the 1960s, and the first case in Northern Uganda was documented in September 2009. The outbreak quelled until late 2011, when local doctors began reporting hundreds of new cases.
The cause of nodding disease is yet unknown, though doctors believe the outbreak is connected to Onchocerca volvulus, a parasitic worm common to the infected areas. The Centers for Disease Control and Prevention has also investigated the link between nodding disease and vitamin B6 deficiency. Other possible origins include wartime chemicals and tainted meat.
To date, medical officials have also been unable to find a cure for nodding disease. In lieu of a solution, parents have resorted to tying affected children to stationary objects with cloth or rope. Otherwise, they may wander off and hurt themselves.
Despite the reported epidemic, Ms. Batanda says the Ugandan government was slow to respond.
“The Ministry of Health operates in a highly contested political environment and sometimes the priorities by the political leaders are highly misplaced,” she said. “In this case, media pressure and opinion leaders from Northern Uganda brought the case of the disease to the national spotlight and decisions had to be made immediately to avert a crisis.”
One of these “decisions” led to the construction of Uganda’s first clinics to specialize in the treatment of nodding disease. Located in the Kitgum, Pader and Lamwo districts — some of the hardest hit areas — these facilities opened on March 12. The BBC reported that approximately 200 affected children showed up for treatment that day.
Though doctors have no cure to offer their young patients, the World Health Organization has reported that anti-epilepsy medication has been somewhat effective. Doctors also counsel these children and their parents on ways to manage the disease and prevent injuries.
Poor lines of communication have compounded the outbreak. Uganda is primarily rural, and most of the country’s population does not have electricity, let alone access to web-based information about the disease.
In the absence of Facebook and Twitter, Ms. Batanda believes cell phones will play a crucial role in educating rural Ugandans about nodding disease. She noted that the use of mobile devices has significantly increased throughout Africa in recent years.
“Even in the remotest villages, you will find cell phone users,” she says. “I would think that if the Ministry of Health engaged the mobile phone operators in Uganda as part of their corporate social responsibility to send text messages to the affected populations about the disease, and what can be done, this would go a long way in sensitization.”
Ms. Batanda believes that Ugandan journalists should be commended for covering the disease, thereby forcing the reluctant government to intervene. However, she says the response is still insufficient.
“I guess the shortfall or challenge has been that we have not had a fully fledged advocacy group on the nodding disease,” she says. “There is a Facebook group aiming to bring awareness to the disease and raise funding but it has been struggling to recruit members.”
Ms. Batanda is not alone in her belief that web-based outreach is key to fighting this disease. Several prominent Ugandan journalists have covered the topic since the disease reappeared resumed in late 2011.
Rosebell Kagumire, a contributor for Inter Press Service Africa, referred to nodding disease as “the most urgent challenge to a northern Ugandan child” in a March 10 blog post.
Nine days later, Daily Monitor reporter Benon Herbert Oluka published an article titled, “Why the nodding disease should make us re-examine journalism.” Mr. Oluka noted that a scant amount of Ugandan press coverage was devoted to the disease between its initial appearance in 2009 and its resurgence in late 2011.
Photojournalist Edward Echwalu first reported on nodding disease in mid-February, before Kony2012 debuted. Mr. Echwalu published a series of photographs on his blog that featured 12-year-old Nancy Lamwaka, a patient from Pader district. He also described Nancy’s distraught father, Frank Odongokara, who was forced to tie his daughter to a tree every day while he worked.
“I don’t want her to go loose and die in a fire, or walk and get lost in the bushes, or even drown in the nearby swamps,” Mr. Odongokara, said.
On March 20, Mr. Echwalu blogged that young Nancy had “registered some progress” since her story was first shared online. Though she still displays symptoms of nodding disease, her symptoms have lessened since doctors began prescribing her anti-epilepsy medication.
“She does not miss a day but the impact is no longer as serious as it used to be. Today she [nods] maybe twice a day, as opposed to about 10 times she used to be attacked,” Mr. Odongkara told Mr. Echwalu.
Despite the tragic toll nodding disease has taken on Northern Uganda, the epidemic has not received even close to the amount of worldwide press as Joseph Kony and the LRA last month.
Ms. Batanda is quick to acknowledge Mr. Kony’s terrible legacy in Uganda.
“Of course Kony’s presence still creates fear and many people will not rest until they know that he has been captured and is no longer a threat,” she says. “The long standing effects of the LRA conflict will take a long time to overcome.”
However, she points out that Kony “has not engaged his battleground in Uganda since late 2005.”
So, Ms. Batanda and her fellow Ugandan journalists are staging a viral campaign of their own. Their message: Kony may be gone, but children in Northern Uganda are still in danger.