Making Them Feel Important

Special Feature appeared @ theSTAR

Anwar Ali

It was not the usual classroom filled with the chorus of children's voices repeating a lesson or the sound of children shouting and chatting. Instead, the children were preoccupied with basic tasks like standing up, walking or working with their hands independently. Some of the more lucky ones were reading books, drawing pictures, working with papers, playing with coloured tools, alphabets and equipment designed for understanding things. Others were being given physiotherapy.

The atmosphere at the classroom is cheerful and friendly

The teachers at this school named Prayash for children with disabilities are also not the usual brand of teachers. Parents and relatives are surprised to see how patient and caring they are, attending to each child, not losing their composure even when the children become hard to manage, for example when they spit on their teachers clothes or even soil their own clothes. Often parents cannot help but become teary-eyed when they see their children being treated with such love and caring. They are just happy that their kids are getting an opportunity that they never had at home. Local people sometimes look at the children with curiosity; some believe that this is some sort of mental institute for 'mad children'. But those who dare to enter the school are astonished when they see the remarkable things taking place within the walls.

The 'Prayash (Endeavour) Multipurpose Service Centre was set up by the Foundation for Women and Child Assistance (FWCA) in the country's northwestern deprived and underprivileged city of Rajshahi. The school gives these children and their families the hope of a decent life. It is a situation where disabled children are often written off by their families and society because they are seen as having no significant economic contribution to make.

Tinku on a standing frame

"I was very surprised to find the underprivileged children with disabilities were being given some attendance, care, importance and whatever the mainstream people have access to," says Sheikh Abu Tarek, a disabled people's leader in the city who occasionally visits Prayash centre out of curiosity. "This is the basic demand of the disabled -- to be included in the mainstream, not to be favoured with special treatment but to have access to what everyone else has. There are many like Tarek in the city who laud Prayash activities as they have seen the positive results of its work.

Emel is now 15 years old and has both intellectual and physical disabilities. When he was only 14 days old he had a severe attack of pneumonia that affected his ability to sit, walk or speak. It took eight years to get his neck strong enough to hold his head. When he was just 5, his father left the family to marry another woman from a distant district. Emel's mother stays at her in-laws' house but has to work at other people's houses, as her in-laws are also poor. Sending Emel to school, under such circumstances, was unthinkable. Now thanks to Prayash, he is in an environment where people care about him.

Ten-year-old Santana is a bit better off than Emel. Her chest and back has swollen up, the consequences of a fever at age three. She came at Prayash at her six. Soon it was evident that Santana was quite sharp and was good at drawing as well as her studies. Her father Santu Chandra Das, a cobbler, is grateful that his daughter has the opportunity to develop her natural talents.

Children with disabilities are usually treated with neglect in our country. They are deprived of their rights as children. Ostracised and sometimes abused, these children are left in isolation and have to go through life without hope. Estimates show, about 80 percent children with disabilities live in low-income families, as there are some 3.4 million disabled children in the country. In Rajshahi city, there is no data on the situations of disabled children other than the base-line study published by FWCA in February 2008. The study estimates that approximately 7123 children with disabilities live in the city out of 44.3 percent of the population of eight lakh below 18 years of age.

The study found that a majority of the children with disabilities belong to the school-going age groups -- 34 percent of 6-10 years and 27.10 percent of 11-15 years. Among the total children with disabilities, about 34.48 percent are intellectually disabled while 26.11 percent are physically impaired, 25.12 percent have multiple disabilities, and 12.81 percent are hearing and speech impaired. In many cases the fathers do not acknowledge them as their children. A large proportion of these children are deprived of health care. About 90.64 percent surveyed children have taken treatment once while a few have never been treated at all. Some 54.89 percent children who have taken treatment were not taken to appropriate professionals. The overall picture of access to education of the children in the city is not happy either as about 70.94 percent disabled children are yet to find access to any school. Such children are at risk, says the study, as protection or care issues of the children are not addressed. A disturbing trend is of parents or organised gangs using children with disabilities for begging. The Rajshahi City Corporation (RCC) has registered the births of all children, but most of the disabled children, about 51.23 percent, are still unregistered.

Disabled children take part in a painting competition at Bhuban Mohon park

Prayash's approach to this deprived vulnerable group is considered novel and exemplary. It has designed a multipurpose service centre near the Helenabad Girls' High School in Rajpara thana areas with equipment for special education and training for the disabled children. It also provides psychological support to the children and their parents as well as a package of services including special education, sports, recreational facilities, physiotherapy, medicare, vocational training, outings, home visits, case management, and parents counselling.

Beginning in late 2004, with a target for providing support for only two disabled children, FWCA is now serving some 70 children at its service centre through nine psychosocial workers (teachers) and two physiotherapists in two shifts -- morning and afternoon. It has now turned into one of the very few prestigious NGOs in Rajshahi publishing annual reports regularly and maintaining transparency to its funds through independent audits.

Officially registered in August 2005, it ran development programmes from its general fund and was self-financed till July 2007 when it availed its first and still last foreign donation from a Norwegian organisation -- Kristiasund Rajshahi Friendship Committee for only 30 children. It has expanded its work now to young adolescent girls and women's rights programme despite the challenge of fund constraints. It is now running two agencies (self-help organisations) for women and adolescent girls.

Prayash's target group includes the marginalised and vulnerable children with disabilities such as mental retardation, Down syndrome, cerebral palsy, autistism and physical disability.

Ishan, counting numbers	Ayesha, painting on the wall

Gulbanu of Guripara Goljarbagh area in the city had a horrifying story to tell regarding her grandson Tinku who became disabled suffering cerebral palsy. Tinku's father is a day labourer and has three sons. Of the three, two normal children live with their parents. But Tinku could not walk, sleep properly, and catch anything as well as his mental condition was not normal. In this condition, his father decided to reject him and pressurised his mother to throw him anywhere. Tinku was considered a burden on the poor family. And one day when his father attempted leaving him in a truck, Tinku's grandmother rescued him from the street. The grandmother Gulbanu, who supports her family by washing clothes for a city laundry, decided to take care of Tinku herself.

Tinku is now being provided with special education, walking on frames, physiotherapy and other necessary services. He can now walk and talk a little. His parents have changed their attitudes to him a bit through counselling, but he continues to live with his grandmother.

"What else I have to do with the child? If he were a domestic cow or goat, I could have planned on selling him out for his illness. But he is a human being. How can I leave him?" his grandmother cries out bitterly. "When he sees someone in good clothes, Tinku stares at him longingly. But I cannot afford to give him new clothes. At Prayash they are doing more from him than his own parents ever did. The teachers are helping him learn, which is more important than a new set of clothes".

Playing like normal kids

Nine-year-old autistic Rimi is also another child discarded by her family. She was seldom included at family functions or to watch television together. Her parents were reluctant about her education as they were busy with the education of their normal son. Prayash's social workers convinced her parents that she too, could benefit from the school. Rimi is now able to read and write and her parents are a lot more enthusiastic about taking care of her than before.

The stories are more or less same for Shawan, Trina and around 80 other enlisted students of Prayash; they all now dream of a better life thanks to Prayash.

Shahrier Tasneem Ishan at 14 is still learning his alphabets and taking vocational training at the class called Shapla at the FWCA's Prayash Multipurpose service centre. Making packets with old newspaper sheets and gum, he becomes enthusiastic enough to talk about his skills developed at the centre. "I can read, draw pictures, dance, play and even act in plays".

Ditto, playing with a walking frame

Shwan Sayem, 13, son of a night guard Abdul Malek is also happy as he can now read Bangla, English, and can do sums, as well as draw pictures and make packets. Santana is a little bit silent than others in the class. Her teacher say she is brilliant; she draws well and understands quickly. She is very diligent about any task she is given.

At other rooms, Ayesha, Proma, Nafiz are being given physiotherapy, Tinku is trying to walk in a frame while the children are playing with toys that help them learn things.

Later when the teachers announce that the hour for playing has come, the thrilled children rush out of rooms to join games. Those who cannot walk take frames for walking and playing.

Farhana Ahtar, the centre in-charge says that her family members often chide her saying she is a teacher of 'the mad'. "But I love to be with these children who were discarded even by their parents... in fact, without mental preparation, noone can work for disabled children as these children are not normal, and often behave abnormally", she says.

Behind the FWCA initiatives is a woman called Wahida Khanam who had to face the challenge of being ostracised by her husband for giving birth to two boys, both with disabilities. Her husband left her while they were in Dhaka so she returned to Rajshahi. Her friend Sadikur Rahman stood by her and her two sons. Daughter of a well-off family in the city, Wahida and Sadikur began an initiative together in late 2004 without realising that they had started something that would become so big.

They appointed three teachers for the two children with a target for spending Tk 6000 per month. They started their work from the garage of Wahida's parents' home at Helenabad which became their first office. Then they realised that the teachers needed proper training for looking after the disabled children. They had to spend Tk 5000 more for pretraining each of the teachers from Dhaka. As the expenses were increasing in this way, and still a friendly environment was lacking, they started adding more children to the programme along with their own sons Mahi and Rahi. Soon they found out that there were many children with disabilities in the city who badly needed an organisation that would help them to develop and learn the basic skills to survive in a hostile environment.

"The history behind our organisation lies in our frantic effort for accommodating Mahi and Rahi somewhere. There was no ideal place for them. We then started thinking of creating the accommodation by ourselves. And when we developed the environment for the two, we naturally felt about rights of numerous other disabled children of the city", said Sadikur Rahman, FWCA president and team leader.

Beginning with a sort of altruistic effort, FWCA is now established as a right based small development organisation. There are, of course many challenges. As an organisation , Rahman says, it is still trying to develop its organisational capacity maintaining its principles.

Ishan, Santana and others are making packets with papers in vocational training.

"We are gaining experience of working with disabilities, destitute, and voiceless women, and young adolescent girls living in risk-ridden situations at urban slums. We practice that every individual is able to contribute to bring about positive changes", he says.

"Our primary mandate is to work on woman and child rights and we are continuing with support of our members, well-wishers, contributors and few development partners in the country. We are facing financial constraints, and we are overcoming the problem through mental strength and our challenge to fight the social problems", says Wahida Khanam, executive director of FWCA.

Although lack of adequate funds has been the main limitation for the organisation there are also constrainsts regarding logistics, technical, and capacity building and lack of skilled staff, she says.

Meanwhile, observes Wahida, there is a growing trend of children's rights being violated which makes disabled children all the more vulnerable because of lack of awareness and education.

Limitations of resources and logistical support has made it necessary for the organisation to think about reducing the number of beneficiaries which means that FWCA cannot address all the representatives of the target group. For a society that constantly shuns disabled individuals, Prayash is a beacon of hope for these children who are often neglected and ostracised by even their own families. It is crucial that the efforts of this remarkable organisation are supported and encouraged.

http://www.thedailystar.net/magazine/2008/10/01/s_feature.htm