CSF News
Voice and vision of children who are blind in Bangladesh: Who cares?
- Dr M A Muhit | 06 Feb 2008
"When I think about my present situation then, even though, I'm blind, I don't have many regrets because we are studying in the same way the people with sight study. We are competing with them to gain knowledge. We will also become well educated like them. In this respect we are nothing less than them. Whatever is their right is also our right."
(A child in rural Bangladesh, who is blind, but had the opportunity to attend a school with integrated education programme)
The voice and vision of 40,000 children who are blind in Bangladesh, remains largely unheard in the mainstream Bangladeshi society. We, the able-bodied and sighted majority, keep ourselves blind and deaf, when it comes to know the life, challenges, hopes and dreams of children with blindness in this country. How many of us really know any child who is blind, how many of us really even bother to ask their name or make an effort to know about their VISION for the world.
Blindness and disability in children, poses wide range of challenges not only to the child but also to the family who is the main care provider for the child. Rights of children who are blind, is largely ignored and often denied by the state, society and individuals who surround a child with blindness. We need to appreciate that the modern and civilized world has progressed to a stage where disability is no longer considered as a 'consequence' of disease; disability is a social construct, a complex interaction between the disease process and the environment (both physical and attitudinal environment) in which the person lives. The World Health Organization published the new classification of disability in 2002, the International Classification of Functioning, Disability and Health (ICF), which clearly describes the disabling effect of the negative attitude of the community towards children who are blind, the barriers in the physical environment that we create and the policies, legislation and programmes that we develop.
Most of the disability faced by blind children in Bangladesh, is not a consequences of their eye condition, disability is actually created by the discriminatory policies, negative attitudes, and general apathy of the population and policy makers, towards children who are blind. This was a major finding from a Nation wide study (Childhood Blindness Project of Bangladesh-CBPB) conducted in Bangladesh, by our research group at the London School of Hygiene and Tropical Medicine, University of London. As part of the study, along with eye diseases data, we also conducted a participatory research through in-depth interviews and Focus Group Discussions (FGD) with children who are blind, their parents and service providers at the grass-roots level. I had the opportunity to visit each of 64 districts of Bangladesh, met over 2,000 blind children, and had serious and long discussions and conversations with them, which was an eye opening experience for me and my research team. For the first time, these children who are blind, had the opportunity to express and articulate their own needs and rights, many of them were extremely able to put forward their views, not only about their own situation, but also about the environment, systems and policies (or lack of them), which makes them feel disabled. Policy makers need to adapt participatory strategies, in order to ensure the rights and hear the voice of children who are blind. We realised that these children might have lost their eye sight, but they have not lost their VISION!
Right to education and learning
Less than 2% of blind children in Bangladesh have any access to education, in spite of Bangladesh's commitment to Education for All. It seems like, Education for All is still perceived by the policy makers as Education for All who are sighted! Blind children valued education and they perceived education as their means to achieve equality, future employment and self-identity. All quotes used here are word to word translation of blind children, age 10 to 15 years, who participated in the in-depth interviews and FGDs.
"I want to become a well-educated person through completing a proper education and acquiring a polite and gentle character. And then if I get a job in an organization then I would consider my life to be successful."
"If I get a job and am able to live a simple life then sightlessness won't mean that much to me."
Exclusion from social relationships and activities:
Children felt disabled when they were excluded from social interactions, playing with sighted children, attending Eid and wedding ceremonies. Limited prospect of marriage, for blind girls, also mentioned by children and parents as a major disabling factor in life.
"I used to see the children in the neighbourhood to go to play all together. If I wanted to go with them, they used to say that we couldn't take you to play with us."
"When there is Eid or any other occasion, they (friends) always go out with those who can see. They don't take me with them. I am always alone on these occasions"
"They (people) say that you cannot get married. No one will marry you. The Kana people do not get married. She cannot she. So who'll marry her? She will never get married."
Verbal abuse and bullying:
Every blind child mentioned about their experience of getting verbal abuse and bullying, from sighted peers, villagers, and as a whole from the 'able-bodied' community members. This is absolutely unacceptable in a civilized society, and causes huge amount of stress to children and their parents.
"There is another thing that hurts us. In the villages, the people don't know much about the blind. So when we go out they say many things and sometimes make harsh comments. At that time we feel very bad. They say a lot of things- Kana, Andha..."
Human rights violation
Children who are blind, faces human rights violation, not only by the community but also by their own family members. They were denied of their rights to education, treatment and an inclusive social life. There were several examples when children were taken out of the schools or parents refused treatment; and engaged their children in begging and earning money for the family. Legislation and policies should be made and enforced to protect the rights of blind children. School teachers, primary health care workers, CBR workers ?all mentioned such incidences.
"It is often seen, that after a child is admitted, months later he or she doesn't come back. Then one day he'll be seen begging in the railway station. In the current state, there are blind children who wander about, but our seats in schools are not being filled up. It is because their parents think that they won't be able to get the money, which they earn, through these children daily if they send them here."
Nothing about us- without us:
Above examples are just few of hundreds of revealing pieces of narratives by the children collected through the participatory process. This experience converted the research teams approach to disability and planning process to create an enabling society for children who are blind. Policy makers, media, researchers and programme planners need to hear the voices of children who are blind, include them in planning, highlight their views in the media, encourage them to become self-advocates for their rights and involve them in monitoring legislation, policy making and implementation of programmes for children who are blind ? as people with disability say 'nothing about us, without us'.
Implications for policy makers:
Our experience over last 7 years, in working with blind children and delivering services for them, conducting research with them, clearly demonstrated that disability is not only related to impairment, it has wide range of social, cultural, political, legislative and service delivery system and policy related determinants. A comprehensive set of actions are needed to tackle these wide range of disability issues.
Action against Disability faced by children who are blind in Bangladesh:
A) Changing the Attitude of able-bodied persons: Advocacy, information and communication strategies and programmes are needed urgently, targeting specific audiences, developing specific messages, and challenging negative beliefs. Supporting parents and community members with advocacy, information, counselling and encouraging positive behaviour is needed to ensure the Rights of Children, who are blind. They have equal rights to education, treatment, rehabilitation, a healthy social life, training, and future prospect of employment, marriage and family.
B) Developing systems and policies: Developing Community based Rehabilitation (CBR) and inclusive education, is needed in a much larger scale compared to what exists at the moment. Provision of training for CBR workers and teachers is an area which requires focussed and sustained effort from the government in conjunction with local, national and international NGOs. Health planners need to plan and support accessible eye care for children in every upazilla of Bangladesh. Primary eye care for children, if available at the doorsteps and in the community, will play a crucial role in prevention and control of blindness and disability in children. Legislation and policies are required to support the rights of children who are blind.
C) Supporting Activity & Participation: Training of children in Activities of daily living (ADL), Orientation & Mobility (O&M), Braille and other essential skills should be primary focus of any initiative aiming to create an inclusive society. The strengths of children and adults who are blind, should be supported, nurtured and utilize as a force of social change. Programmes and policies should support initiatives to facilitate the development of 'positive self-identity' (or 'personhood') among children who are blind and engage them as 'role models' to other children. We need to ensure social participation, organize inclusive festivals and events to make society more inclusive and equal for children who are blind. At an individual level, we should all encourage our sighted children to play with our own and neighbours children who are blind.
D) Providing Medical care: Early detection and treatment of eye diseases in children is critical for best visual outcome after treatment and surgery. Medical care should include eye care as well as early intervention to support positive psycho-social and functional development of children who are blind. Counselling for parents is an essential part of medical services for children.
Vision of children who are blind: Many children, who are blind, demonstrated their ability to lead and become role models for other children (both blind and sighted). If the society can ensure their rights to education, learning, development and social participation, they have the potential to lead their peers, community and in future the state. Children, who are blind, definitely have a better, bigger and brighter VISION for the World.
?If Allah gave me the power to change something in this world, then I would have changed malice, jealousy, disputes, troubles, robbery etc between people and I would have built a loving & friendly relationship between all the people.
It is our societal duty and state obligation to ensure the rights of all children, with or without blindness, so that they can pursue their VISION for the World.
