In many developing countries, people with disabilities, especially those with hearing and visual impairments, are often not educated about health and disease prevention because the information is not shared in a format they can understand. This lack of information makes them more vulnerable to contracting disease and less likely to seek appropriate care. This is certainly the case with the current Ebola outbreak in West Africa. Adam Huebner, Handicap International’s health coordinator in Liberia and Sierra Leone, blogs about Handicap International's efforts to educate people with disabilities about the disease and how to prevent it.
The Ebola outbreak which began in Guinea earlier this year continues to spread uncontrollably throughout West Africa, triggering the recent announcement from the governments of Sierra Leone and Liberia for an official state of emergency. More than 2,000 cases with 1,145 deaths have been reported. Looking at the relatively low number of cases compared to other more prevalent and unpredictable killers in West Africa such as malaria, which caused estimated 627,000 deaths in 2013 worldwide, it may seem a bit surprising as to why the Ebola outbreak has caused such wide-spread pandemonium.
In my experience, it is fear that drives Ebola’s spread. Unlike common killers such as malaria, Ebola is not well known or understood by communities in the affected countries. Ebola is a faceless killer here, one who keeps the close company of rumors, gossip, and other-worldly explanations like no other. This fear causes people to chase away health workers, destroy health facilities, and rely on rumored and unfounded means of protection and treatment.
The best strategy for containing the outbreak is to give Ebola its “face” by providing the public with uniform and timely information about the disease, and how it can be contained. Put the power of prevention into the hands of the people—that is the quintessential heart of a public health response.
Initially, in Sierra Leone, cases started to appear in the east of the country and Handicap International was able to continue its regular mother and child health, inclusive education, livelihoods, and inclusion projects. As the virus spread, our teams continued to monitor the situation closely and some staff were moved out of the hardest hit areas of the country. Simultaneously, Handicap International began to education community health workers about Ebola and how to prevent it from spreading.
Following the Sierra Leone’s decision to refocus resources and support the containment of the outbreak, Handicap International contacted one of its donors, the European Union, and redirected some funding to Ebola awareness and prevention support activities.
As much as possible, our actions target people with disabilities. In poor countries like Sierra Leone, people with disabilities face significant barriers in accessing both services and information. Communication and information dissemination is often geared towards the general population with no consideration for the means by which some people with disabilities, especially those who struggle to hear and see, acquire information. This is further complicated by the fact that discussions about Ebola are often intertwined with rumors, misconceptions, occasional deleterious traditional beliefs and scare tactics, which makes teasing out key, truthful messages that much more difficult. People with disabilities face an additional challenge during this health crisis because they often rely on the physical support of others (e.g. pushing a wheelchair, taking the arm of a blind person for guidance) and many community members are afraid to touch other people.
By partnering with the local rights organizations One Family People and African Youth with Disability Network Sierra Leone, and in collaboration with the National Commission for Disability, Handicap International devised a program to transmit key information about Ebola to vulnerable people and provide them with soap for hand washing. Handicap International and its partners have so far conducted awareness sessions for 17 disabled people’s organizations (DPOs), special education schools, institutional living centers, and communities for people with disabilities. During these sessions, we provided critical information about Ebola and, more importantly, the opportunity for people to ask questions and gain clarity to dispel common false perceptions.
The targeted organizations and individuals were very thankful; with many individuals saying our presentations provided the “first and only” opportunity for them to learn the truth about Ebola prevention. They also openly discussed and challenged their own ideas on whether Ebola is real or not, as some previously believed it was fabricated by outsiders, or simply cholera or malaria repackaged for political purposes by the government. While information was kept basic and in the local Krio language, general concepts of germ theory helped to reinforce the importance of hygiene and avoiding contact with sick individuals.
By making Ebola real and understandable, no longer just an abstract concept, fear and mistrust are starting to die away. Communities and individuals can confidently implement simple and effective strategies to prevent transmission. All institutional and humanitarian stakeholders are now focused on well-targeted communication messages for the whole of the country and Handicap International is on board to ensure that nobody gets left out.