Overcoming special needs in rural Rwanda
Life is difficult everywhere for children with special needs and physical handicaps. They face daily struggles to accomplish tasks that many take for granted such as walking to school or eating a meal.
But in rural Rwanda these struggles are magnified by lack of resources, lack of accessibility, inherent prejudices and the lack of a cohesive, viable plan on how to address those issues. In many communities, disabilities, both physical and mental, are viewed with distrust and seen as a punishment for their families, and as a result some children are abandoned and families are ostracized.
In spite of this, there is an active advocacy community for those with special needs in Rwanda and several centres for children across the country. One of these centres is the Ngwino Nawe Disabled Children’s Village in Ruharambuga sector, Nyamasheke district. Ngiwno Nawe means “come to us” in Kinyarwanda and is supported by Rwanda Aid, a UK run NGO in Rusizi.
Ngwino Nawe currently houses approximately 60 children with a wide range of disabilities, both mental and physical. They live in houses of eight children supervised by staff caregivers and older students. The more able children go to the nearby Ntendezi Primary School, while others remain on site. While many students go home during the school holidays, for some, Ngwino Nawe is their full time residence.
Many of the children are deaf and there are two sign language interpreters who work at the school full time to assist in the classroom. Although hearing impairments can be present at birth or develop afterward, the World Heath Organization states that, “Half of all cases of deafness and hearing impairment are avoidable through prevention, early diagnoses and management.” In a fact sheet released by the WHO in April 2010 it was estimated that while 80% of those with moderate to profound hearing impairments live in developing countries, “fewer than one out of 40 people who need a hearing aid have one.”
The deaf community in Rwanda is very active through organizations like RNUD (Rwanda National Union for the Deaf), which was founded in 1989. RNUD aims to raise awareness and make the necessary services available to their community and in 2009 they produced the first edition of the Rwandan Sign Language Dictionary. Several students at Ngwino Nawe attend local primary schools with the support of full time sign language interpreters and many have also been provided with hearing aids through charitable foundations like the Starkey Hearing Foundation.
Some children adapt easily to using hearing aids, while for others it is more difficult as the new sounds can be disruptive, unpleasant and strangely unfamiliar. For this reason some children turn them off and rely on alternative forms of communication instead. It is especially difficult to monitor the effectiveness of hearing aids when the children in question also have mental disabilities.
Speech and language therapist Ségérine Donner, who has worked in both the Netherlands and Fiji, is now living in Rwanda and working with several organizations that address both hearing impairments and mental disabilities, including Tubakunde and Kigali University Hospital. “I got involved with centres for children with mental disabilities. The different associations have done a great job convincing parents that children with disabilities need education and training just as much as other children,” says Donner. “They deserve it.”
As a result, parents are now more willing to bring their children to centres such as Ngwino Nawe to give them opportunities to learn and develop. Nevertheless
, Donner still finds that the misconception exists that “children with disabilities are not capable of learning.”
Donner says that it is important to “talk through” activities with children even when that child is incapable of understanding and that constant communication is crucial to development. Visual imagery is also helpful to make connections and assess understanding for those who can’t effectively communicate orally.
During a visit to Ngwino Nawe Donner worked one on one with some of the children and had them match real objects to the appropriate picture card. Then she made the activities more complicated by removing objects and asking more challenging questions. The exercises demonstrated that even though these children may be unable to speak clearly, unable to respond when spoken to, and unable to independently feed themselves, they are capable of understanding what is happening around them. Intensive communication is crucial to developing and maintaining intellectual capacity in children with disabilities.
Donner recognizes that while “children with disabilities may not reach the same level, they are capable of learning.” Additionally, it is important not to label children as having mental disabilities if they are unable to communicate orally. Further investigation and assessment needs to be done before deciding that a child is incapable of understanding.
Along with hearing loss, many of the children at Ngwino Nawe have cerebral palsy, developmental delays, autism, and other mental and emotional conditions. Moreover, some of the children have already overcome huge issues in their young lives. Fidele, for instance, was abandoned by his mother and dropped in a toilet only to be found by neighbours. Sifa, who was found living on her own in the woods, is still adjusting to her new environment and the people in it. Other children have less dramatic backgrounds, but they have various levels of paralysis and use wheelchairs and leg braces to get around.
Sadly, it is difficult for most of these children to access the necessary physiotherapy treatments in rural areas, as most of the services are restricted to Kigali or to the larger rural hospitals. Joseph Munyandamutsa is a recent graduate from the physiotherapy program at Kigali Health Institute. He says that the most common problems facing the disabled population in rural communities are “bad behavior about disabled persons and financial problems.” While many are ostracized for having disabilities, others merely cannot afford the necessary care. This often includes trips to specialists in Butare or Kigali or the appropriate treatment and assisted living devices, including hearing aids and wheelchairs.
“I am motivated to promote welfare in disabled people because they are ignored in their communities,” says Munyandamutsa. He feels that community sensitization programs are very important in rural areas and that the trend of punishing the individuals who have children with special needs has to change.
While the children from Ngwino Nawe are welcomed at their local primary school, this is not true for everyone. During a school visit in a rural community Volunteer Service Overseas (VSO) volunteer Brigid Rose Grant spoke with a teacher who complained about one of her students who was always “disruptive” and exhibiting bad behavior in the classroom. After meeting the student Grant quickly determined that he had Down’s Syndrome. She then explained what this meant to the classroom teacher and the head teacher.
While special needs and disabilities are common in Rwanda, most teachers do not receive training how to address the issues in the classroom. In response to the difficulties that both teachers and students can have in the classroom one head teacher in Nyabitekeri sector in Nyamasheke district recently requested that all his teachers be trained in how to identify and work with special needs in the classroom.
However, the challenges that the disabled population face in Rwanda is not limited to issues of community prejudice or universal access. Donner says that another challenge is “that people visit a country for long or short periods of time and feel they want to do something.” While the intent is good, the efforts are not always coordinated and are often guided by the person interested in helping, and not by the beneficiaries themselves.
Donner feels that it is important that the Rwandan community themselves set the parameters and develop their own guidelines for individuals and NGOs who want to be involved with disabled communities. “I am trying to teach educators to set goals for what their students can achieve and to decide what achievement looks like,” she says. The same can and should be done for the disabled community as a whole. Instead of individuals and NGOs running their own trainings and programs, they should support the programs and needs identified by the Rwandan community.
As Munyandamutsa says, it is crucial to work with communities to overcome existing prejudices and barriers, and to combine that with a set defined goals. This will allow children living with disabilities in all parts of the country to reach their potential and to engage to educational activities in spite of whatever disability they may have.
Elizabeth, one of the girls living at Ngwino Nawe, is in a wheelchair and dreams of becoming a doctor. With access to the appropriate supports, there is no reason why she shouldn’t become one.
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