Parents must speak up, say early childhood intervention advocates

KUALA LUMPUR: Parents of children with disabilities should band together and speak up to have their kids included in the mainstream education system.

This is the opinion of National Early Childhood Intervention Council (NECIC) president Datuk Dr. Amar Singh, who said Malaysian parents were currently not assertive enough.

"We need to build a ground force. The ground can change. The parents of children with disabilities can start the movement, and other parents can be sympathetic. I think we are ignoring this powerfulforce," said Amar. 

Speaking at an interview at the Unicef offices here, Amar added that for the creation of an education system that included both able-bodied children and those with disabilities, the way parents are seen has to change.

"They are a force we have not adequately invested in, especially parents of children with disabilities. They have been viewed as aid recipients. But they are not recipients, they are partners and advocates - and they are a loud voice that can inspire other parents," said Amar.

He said an inclusive education system would work to demystify people with disabilities and dispel any stigma and stereotypes.

"We have had occasions where adults got to meet people with disabilities and it changed their whole mindset and perspective," said Amar.

He spoke of a success story of a girl with autism being included in mainstream classes in a Perak rural school.

"The headmaster got different classmates to write down her homework for her in a small book, and he spoke to her classmates without her present letting them know that she was different but not abnormal," said Amar.

Amar however criticized the key performance indicator (KPI) system now in place in schools, which he said drove some teachers to push slow learners into Special Education classes to keep their exam pass rates up, adding that the KPIs were "really frightening" as  promotions were being linked to literacy,

He pointed out that in  Finland, the worst students get the best teachers, and added labels should change to allow children with disabilities to enter mainstream education.

"Our focus is getting these kids into mainstream education and we need to work on a policy basis, a national basis to change the mindsets and heartsets of people," said Amar.

He suggested that technology be incorporated into the mainstream education system to aid children with disabilities.

"Voice activated computers can be used to aid children who have disabilities preventing them from writing to allow them to participate in class," said Amar.

Similar views were shared by the Unicef Representative to Malaysia, Wilvina Belmonte, who said an "inclusive society" has children with disabilities in the classroom without any labeling or stigma.

"See the child before the disability. Just because the child is in a wheelchair, uses a white cane or has a learning disability does not make them fundamentally different from another child. It's about learning," said Belmonte.

She added that such stigma emerges because people are often scared of things that are unfamiliar to them.

She added that when it came to looking at children with disabilities, the child should be looked at as a whole being, and not seen just for their disability.

"Whether he's disabled or not just treat the child as a child. They have their own unique capabilities," she said.

Belmonte said some of the problems of including children with disabilities into the mainstream education system came from parents of non-disabled children.

She said such parents were against having children with disabilities in the same classroom as their children as they were afraid it would "dumb down" the class.

However, she said an inclusive classroom created win-win situations for all students.

"You just see them as people you live with every day. Mainstream children end up helping their peers with disabilities, whether it's mentoring or helping in the teaching. So that relationship is good for both children," she said.

Belmonte cited a successful project in Montenegro where parents originally had deeply entrenched, aggressive feelings of opposition towards children with disabilities integrated in the classroom with their children.

"Parents had never met children with disabilities, and the integration demystified things and brought them away from conventional biases," said Belmonte.

She added that by the end of the pilot project, 70% of the parents who had once opposed inclusive education were now in favour of it.

She also cited the Paralympics as an example of how barriers could be lifted for the acceptance of people with disabilities.

"You see these amazing athletes and you are not thinking about the disability but about the courage, the guts. You see them win and lose, you see them cry because of the effort they put in," said Wilvina.

Meanwhile, Raymond Dong, the father of profoundly-deaf 10-year old Natalie Dong spoke of his experiences in getting his daughter included in mainstream education.

Dong said he had trained Natalie and her elder brother to communicate with their teachers when situations emerged, such as when her cochlear implant needed a battery change.

"The teachers were very helpful and worked together with us," said Dong. He added that he taught Natalie how to respond to curious teachers and classmates.

"From an early age we have taught her, her brother and other family members that she has a special ear to hear. It is a simple answer to build up her confidence," said Dong.

He urged parents to be active in support groups to reap the benefits for their children.

Dong said parents could support each other with these groups. "If parents can work together, a lot of things can be solved, such as where to find doctors, specialists. It can save valuable time," said Dong.