Raising the agenda for children with disabilities
These children remain one of the least reached out to communities in almost every society.
COMMENTBy Anthony Thanasayan
Most of us may not realise it, but when it comes to people with disabilities, children probably have it far worse than do adults and the elderly. This is true not only for Malaysians with disabilities but also around the world as well.
Children with disabilities remain one of the least reached out communities in almost every society. In hospitals, they tend to receive some of the poorest and bleakest prognosis about their future living with a disability.
Disabled children frequently do not have the same opportunities in a learning system like schools compared to their non-disabled counterparts. Most people mistakenly think that handicapped people are unable to be gainfully employed.
Some even think that it is better for them to die than to even try to eke out a living or existence for themselves.
And as far as children with disabilities are concerned, they virtually have no say whatsoever in matters that involve them. Even non-governmental organisations for children, rarely invite kids with disabilities to participate.
The same sad state of affairs goes with organisations for the disabled who mistakenly assume that disabled kids are getting attention elsewhere.
As for the government, they hardly bother inviting handicapped children to meetings in order to hear their views and concerns.
More than 50 healthcare and social workers including persons with disabilities themselves together with key government representatives attended a two-day special forum in a leading hotel in Kuala Lumpur to try and change all that.
The event was organised by UNICEF Malaysia.
It resulted with the setting up of a brand new initiative called “The Malaysian Partnership on Children with Disabilities or MPcwd.
It was formed to raise the voices of children with disabilities and help promote their rights in Malaysia. This will be done through networking, advocacy and communication programmes and activities by the participants who attended the forum.
MPcwd aims to help children with disabilities and their families to advocate for their rights, raise awareness about their struggles and remove stigma and other obstacles that prevent them from living a high quality of life.
Dr.Sazlina Kamaralzaman was one of the participants at this UNICEF event.
Born in Perak but raised in Kuala Lumpur, she is now a lecturer at the School of Rehabilitation Sciences, Faculty of Health Sciences, Universiti Kebangsaan Malaysia – a position she has held since 2000.
“I became an advocate for children with cerebral palsy (CP) after I was inspired by their lives – one of them was my nephew who died of complications at the age of 11,” explained Sazlina who is currently the chairman of the Malaysian Advocates for Cerebral Palsy.
“Whilst I was devastated that even with my knowledge in medicine, I was not able to save my nephew and others because there is no cure for CP, the good news is there are many devices and services that can help CP children lead a high quality of life,” Sazlina added.
“The most frustrating part however is, even though medical help is available, not many kids who need our help are able to get to us.”
Sazlina then went on to share her impressions about the Malaysian Partnership for children with disabilities forum.
She pointed out that unlike the many previous discussions on disability which she had attended representing her university, the UNICEF forum was her first as an advocate for disabilities.
“This was the first time I realised that I was not speaking on my ‘research subjects’ but about a group of individuals whom I love very much and was fighting hard for their rights to be heard.
“This created a totally new atmosphere. After hearing what some of the academicians said, I couldn’t help saying to myself, “Oh oh, this was what I sounded like before in other forums… like a broken record!” Sazlina laughed.
The forum made her even more passionate about raising CP in all issues.
For Sazlina, without a doubt, the strongest point of the event was the UNICEF forum facilitator Amy Farkas, a specialist in inclusive development and disability rights.
She was able to pick up cues from what the participants said and managed to gear them in the direction of what was needed to be done in taking on the challenge to champion the rights of children with disabilities in our society.
“Her patience in being able to deal with all our ideas, some rather burnt out after years of service with the disabled gave us useful input to re-challenge ourselves.”
Having said that, Sazlina, is optimistic as to where the forum’s goal will lead to in the end.
Some of the participants she spoke to after the forum – especially from the government – were already expressing reservations especially about whether it will be able to change a system that has been used to one way of thinking for so long.
Only time will tell, as they say.
Anthony Thanasayan is a FMT columnist
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