A new app lets patients who recovered tell their story.
Ebola survivor Camara Fantoulen. Image: #ISurvivedEbola/Flickr
When we write about Ebola, there's a tendency to focus on the most fearsome aspects of the story; with a death count in the thousands, it's hard not to. But one campaign supported by UNICEF and funded by the Paul G. Allen Family Foundation finds a more optimistic focus: stories of survival.
#ISurvivedEbola is a campaign led by PCI Media Impact, an organisation that describes itself as working in "entertainment-education and communications for social change." Today, it launched an app for Ebola survivors in West Africa that allows them to share their story of overcoming the disease.
Senior campaign manager JD Stier, based in New York, told me in a phone interview that survivors were the "greatest unreported resources in West Africa."
"People that had taken the right steps, sought treatment, and all had a certificate of being cleared for Ebola: These are individuals that should be celebrated as heroes, that should share accurate, critical public health information with their fellow West Africans," he said.
The first post is from Camara Fantaoulen, known as Fanta, an Ebola survivor in Guinea who now works at a treatment unit. Posted on the campaign site today, her message reads "Yes, I survived Ebola, thanks to the help of the brave healthcare workers who treated me. And I've learned that together, we can defeat this virus and protect our families and communities."
PCI Media Impact gave her an Android smartphone, along with other survivors, loaded with a custom app (it's carefully monitored so not just anyone can access it). The survivors can upload posts, the idea being that they can share public health information. Stier gave an example of the kind of messages that might be useful, like "I'm so glad I sought treatment early," or "I survived because I went to the Ebola treatment unit."
It's also intended as a platform where survivors can communicate their ongoing experiences, and one of the main targets of the campaign is stigma: Some Ebola survivors have been met with discrimination by communities that are scared of the virus. Stier partly blames a media over interested in death rates and horror for enhancing that stigma.
"There are going to be days when doors are shut; there are going to be days when survivors are not welcomed back to work," said Stier. "We want to be able to create a platform whereby survivors can share that nuanced experience of survival with each other and an international audience."
Others can see the messages on the campaign website, and spread across other media in the project.
The social media app is just the latest, and flashiest, component of the campaign. In fact, much less high-tech devices might reach more people in the most affected areas. "We're taking all of the public health information from all our mediums and turning it into print materials, and distributing it to households that don't have radio and don't have TV," explained Stier.
The organisation also posts survivor stories in video and audio clips online and in TV and radio spots. In one audio piece, survivor Decontee Davis from Liberia recounts difficulties she faced after recovering from Ebola. "My family faced a lot of stigma," she says. "Even my own son could no longer play in the community with other friends."
Stier said one of the organisation's mainstays is also radio dramas, where characters face scenarios relevant to their audience.
Other projects are also using mobile phones and radio to spread awareness about Ebola. In October, IBM launched an initiative that used simple text messaging and voice calling to allow citizens of Sierra Leone to communicate concerns. UNICEF has also been involved in other campaigns to distribute information via mobile phones, radio, and TV, and the Centers for Disease Control and Prevention provide a bunch of public service soundbites in local languages. There's even been a dance track about Ebola.
But #ISurvivedEbola stands out by focusing so much on survivors. Stier said PCI Media would continue to produce survivor stories, ultimately in 12 languages. "Survivors here represent courage, resolve, determination," said Stier, and commended all those who participated in the campaign for "sharing hope among their fellow countrymen and countrywomen."