Last Friday, the world marked the International Day of Persons with Disabilities. It was a day set aside by the United Nations to mobilise support for the dignity, rights and well-being of persons with disabilities. According to a new report from UN Children’s Fund, UNICEF, one out of ten children live with disabilities and experience deprivation in indicators such as health and education. In an interview with journalists in Abuja, Mrs. RAHANATU YUSUF, an expert on Special Needs Education and founder and Managing Director of The Brain Bloom Center speaks on how society and the Nigerian government can help create awareness and protect children with disabilities. The Abuja Inquirer was there. Excerpts:
Can you tell us about your Brain Bloom Center and what you do?
I run an educational support center for children with special needs called The Brain Bloom Center in Abuja. Our mantra is that all children are special and we are passionate about making them successful, self-sufficient and independent life-long learners.
All children are welcome at the center, they come in as individuals, we assess them, draw up individual learning plans for them and we set targets. Most of these targets are based on skills that they need to learn to become independent individuals. We attend to them in a conducive, stress-free environment.
What is disability?
The World Health Organisation, WHO, defines disability as “an umbrella term, covering impairments, activity limitations, and participation restrictions” of the human body. The United Nations Convention on the Rights of Persons with Disabilities in its preamble, says, “disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others.”
There are different types of disabilities which loosely fall into four separate categories – intellectual, physical, sensory, and mental illness. Physical disability may affect, either temporarily or permanently, a person’s physical capacity and/or mobility.
Examples include amputation, arthritis, acquired spinal injury, and post-polio syndrome. On the other hand, sensory disability affects one or more senses; sight, hearing, smell, touch, taste or spatial awareness. Examples include, autism spectrum disorder, blindness and low vision, hearing loss and sensory processing disorder.
What challenges do persons living with disabilities face?
Persons with disabilities face three major kinds of barriers namely, attitudinal, environmental and institutional: attitudinal barriers can result from negative perceptions and stereotypes based on cultural beliefs, myths and superstitions that that disability is a curse. Environmental barriers resulting from conditions of the natural or built environment that make it difficult for all people to access or use public places; while institutional barriers include absence of policies, strategies or practices that protect the rights and promote accessibility and inclusion of persons with disabilities.
Are there any governmental policies that focus on caring and protecting children living with hidden disabilities?
No, there are no governmental policies as far as I am aware. These neurological conditions are not recognised as diseases. That may be because Nigeria is dealing with a lot deadlier diseases like malaria, measles, and they are not focusing on these types of disabilities. Some of the physical disabilities are being addressed because they are in your face and you cannot run away from them.
Most people that are passionate about this cause are people who have family members who are affected and they are forced to deal with it. But these hidden disabilities can have the same debilitating effects on the lives of children and their families. Children need constant care. Now that we have moved towards the health insurance scheme in Nigeria. The government needs to do something about incorporating these therapy sessions into the health insurance scheme.
What do you think the community needs to do to assist these people?
I’m not blaming the community totally because you can’t act on something that you don’t know anything about. But they need to know, they need to be aware of these conditions. They need to be brought to fore, so that people know that if they see a child behaving in a certain way, they will be able to identify the symptoms. A lot of children go undiagnosed until they are grown-ups.
What kind of programs do you think the government need set in place to make life easier for these children?
We have to create awareness. Agencies like the National Orientation Agency have to visit the rural areas, organize activities and awareness campaigns especially in hospitals. There should be a unit in the neurology department of our hospitals to help identify and diagnose these children.
Studies have shown that early intervention is key to the efficient treatments and management of symptoms of hidden disabilities. We need to get to a point where we don’t need travel abroad to get proper diagnosis because the services available are scarce and specialists are very expensive.
The Nigerian government needs to train health personnel, teachers and schools and provide a subsidy on the services or at least add them on the health insurance scheme. The government needs to create respite spaces for these children and these parents.
We need to have special schools for them as well especially children who are on the severe end of the spectrum. They need to be in a school that understands their needs and will put modifications in place to make sure that they are comfortable.
Is there any data on which hidden disabilities are prevalent amongst Nigerians, and how is that data being managed?
“I just finished a research and my focus was mainly on autism. I can tell you that data about autism in Nigeria is really scarce. There are some data on autism mainly about the age when they present to the clinic and barriers to seeking help and diagnosis. The prevalence rate of children diagnosed with autism in Nigeria compared to other countries is low and it is not because we have less children on the spectrum, it is because we are not doing enough assessments and the lack of awareness.
Finally, can you share some helpful tips or approaches to managing people with these disabilities?
Remember every person is different and has different needs. You have to accept that people perceive the world in a different way to you, not a wrong way; take your cue from the person, listen to them and accept and validate their perspective; encourage the person to accept and be proud of who they are; adopt a ‘can do’ positive attitude to ensure the person feels they can achieve their goals: be open minded – accept and value difference.
QUOTE
“The prevalence rate of children diagnosed with autism in Nigeria compared to other countries is low and it is not because we have less children on the spectrum, it is because we are not doing enough assessments and the lack of awareness”
