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 in
countries around the world as well.
Children with disabilities remain one of the least reached out
communities almost in 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 involved them. Even nongovernmental
organisations for children, rarely invited kids with disabilities to
participate.
The same sad state of affairs goes with disabled organisations who
mistakenly assume that disabled kids are getting attention elsewhere.
As for governments, they hardly bother inviting handicapped children to
meetings in order to hear about 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
living.
Dr Sazlina Kamaralzaman was one of the participants at the UNICEF event.
Born in Perak but raised in Kuala Lumpur she is now lecturer at the School
of Rehabilitation Sciences, Faculty of health Sciences, Universiti Kebangsaan
Malaysia - a position she has held since the year 2000.
"I became an advocate for children for cerebral palsy (CP) after I
was inspired by their lives - one of them was my nephew who died of
complications to the condition at the age of 11," explained Dr Sazlina who
is currently the chairman of 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," Dr Sazlina added.
"The most frustrating part, however, is, even though medical are
around, not many kids who need our help are able to get to us."
Dr 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!” Dr Sazlina
laughed.
The forum made her even more passionate about raising CP in all issues.
For Dr 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 our years of service with the disabled gave us useful input to
re challenge ourselves."
Having said that, Dr Sazlina, is cautiously 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 some 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 truly tell, as they say.
Note: All MPcwd advocacy efforts will be guided by national and
international frameworks, including the Convention on the Rights of the Child
(CRC), Convention on the Rights of Persons with Disabilities (CRPD), the
Millennium Development Goals, the Sustainable Development Goals (post-2015
Agenda), the Asia-Pacific Decade of Persons with Disabilities (2013-2022)
including the Incheon Strategy to “Make the Right Real” for Persons with
Disabilities in Asia and the Pacific, and national goals like Vision 2020 and
the 11th Malaysian Plan.
The MPcwd was established under the umbrella of the Global Partnership
on Children with Disabilities (GPcwd), led by UNICEF and which globally is made
up of more than 575 individuals representing over 240 government and civil
society organizations.
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