Pendidikan Khas

When I read the news regarding the proposal to build a welfare village in Miri, Sarawak, I was disturbed by the concept of a “welfare village”. I realized that, as a society, Malaysia is still rather ignorant about the concept of equity and inclusion when it comes to individuals with disabilities.

The idea of a “welfare village” may have been conceptualized out of good intentions, but a welfare village is an obstacle to Malaysia’s vision of a caring society. Instead of a caring society in which all Malaysians are included in all aspects of society, a centralized welfare village would only serve to further isolate residents of current welfare homes to the outer fringes of society.

The community where the welfare homes should be a part of is not among a larger community of “welfare” residents, but among the general population. Instead of just interacting with each other, residents of welfare homes should be interacting with the rest of society.

The help and support that the residents need should be provided within the community and by the community. The residents of welfare homes do not need new, isolated and separated facilities. They should be sharing necessary facilities with the public, and not among themselves.

Rather than spending money building new facilities in a welfare village, the Sarawak state government should consider upgrading current public facilities to allow easy access by all individuals with disabilities. In addition, the staff of these facilities should be trained to provide necessary supports to enable the residents of welfare homes to fully benefit from these services.

The aged, the single mothers, the orphans, the individuals with physical and intellectual disabilities, and other “needy” groups are part of what makes the Malaysian society whole. The Malaysian government should work towards an inclusive caring society where neighbors care for each other, and the weak among us are not shipped off to a distant location where they become “out of sight, out of mind” and most of all, out of our hearts.

Friday April 18, 2008
Sarawak plans to have ‘welfare village’
By STEPHEN THEN

MIRI: A pioneer plan has been mooted in Sarawak to construct a “welfare village” - where all welfare organisations and charitable homes would be housed in one big centralised location - so that inmates would be able to live as one society instead of being isolated as is the case now.

Miri City, the oil capital of Sarawak, has been earmarked to be the first urban centre to have such a welfare village.

A plan is now being drawn up by the Miri Resident’s Office on the structure and layout for this welfare village.

Miri Resident Ose Murang said the plan would be submitted to the State Cabinet for consideration and approval.

“At present, these welfare homes are scattered all over the place, with inmates living isolated from the community and the rest of society.

“We want to construct a centralised village where all these welfare homes can be located in one common welfare village (different buildings but in same zone).

“This welfare village would have the necessary facilities for sports, skills training and physical rehabilitation that the inmates from all the various different homes could share.

“This concept would enable the inmates from the different welfare homes to live as one big community, interact with each other and help each other as support groups.

“This centralised welfare village would also enable more efficient administration and management of the homes, enable family members of the inmates to visit regularly and enable the authorities to manage and monitor the progress of these homes in a coodinated manner,” he said on Friday.

Murang on Friday discussed the proposed plan with Deputy Chief Minister Tan Sri Dr George Chan Hong Nam and sought his advice and opinions.

If the welfare village is approved, it would be the first of its kind in state and country.

At present, welfare homes that cater to the blind, the handicapped, the old folks, orphans, accident victims, psychiatric patients, single mothers, abused women and other needy groups are located all over the cities and towns in Sarawak.

Each of them operate independently, and many of them do not have adequate facilities to train inmates in skills-acquisition or physical rehabilitation.

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The United Nations has designated April 2 as World Autism Awareness Day, and today is the first World Autism Awareness Day.

Since I’m in the field of special education and autism was the disorder that sort of changed my career path and led me to where I am today…which is sitting in my room in a foreign land with the gianomous task of getting a dissertation done, plus all the stress, pressure, and guilt (when I’m doing something else other than the tasks that will get me to the finish line) thrown in, I thought I’ll post something about autism today.

This semester, I’m sitting-in in a semester-long doctoral seminar on Autism Spectrum Disorder. I’m not actually taking the class, but I thought I’ll just sit-in during the class and catch up on the latest research in the area of autism. The great thing about sitting-in is that it costs me nothing and I don’t have to work on any assignment, I just needed the professor’s ok for me to unofficially join the class. The bad thing about sitting-in is that because I don’t have to do anything, I really don’t do anything and sometimes I don’t even concentrate during the class, my mind just wanders off to the list of things I need to get done later. Anyway, here’s something I got from the class:

Six Myths of Autism Spectrum Disorder (ASD)(Sicile-Kira, 2004):

1. Everyone with an ASD has a special, extraordinary talent (the Rain Man Myth).

I’ve taught a number of students with autism and I’ve only met one boy who was talented in architectural line drawings. He could reproduce detailed line drawings by following a photograph of the building. Other than him, I don’t remember any other exceptional talents.

2. Everyone who has an ASD is a genius.
3. Everyone who has an ASD has mental retardation.

All the students with autism that I know of are on a continuum of “smartness”. Some can read, write, do math; some can’t recognize ABC or 123; and the rest are in the middle. I have not met an exceptional academic talent, but I’ve read books about (and by) individuals with autism who are professors and professionals in different fields.

4. Everyone who has a symptom of an ASD has an ASD.

Just because a person hates situations where s/he has to engage in small talk or s/he finds social interactions difficult, that does not make the person autistic.

5. Symptoms of ASD cannot improve.

If that is true, I’m doomed. Thankfully, that’s not true and lots of research have shown that individuals with autism can learn the skills they need to function in this world. And if you start intensive intervention early enough, the outcome will be much better.

I’ve also read books on dietary interventions (e.g. gluten-free and casein-free) that documented mind-blowing results. However, empirical research do not support those findings and dietary interventions has been relegated as “Interventions That are not Recommended” (Umbarger, 2007).

Honestly, I wish it was as simple as just removing all wheat and milk products from a child’s diet, and that child with autism will immediately show improvements. In addition, dietary interventions are not easy to implement, it’s a total upheaval to the family’s routine. If a family comes to me and tells me that they want to implement a dietary intervention, I would be supportive but I’ll warned them that it’s not yet evidence-based and that they will have to be prepared to make the drastic changes and stick to the new diet for at least one year before deciding to stay on or stop the diet. No half-hearted effort allowed here.

6. People with ASDs have no emotions and do not get attached to others.

I remember a student with autism who did not show much emotions and she sort of looked as if she’s not aware of what’s happening around her but she loved it when I put my arm around her shoulder. I remember another student with autism who looked very aware of what’s happening around her and she totally hates it when I just sit close to her. And she’ll let me know her displeasure by giving my arm a tight slap.

I’ve read a book where the guy with autism, Joe, was suspicious that his lover is seeing someone else. Joe would noticed everything: if his lover, who worked at home, said that he (yes, it’s a he) went out for jog in the afternoon and that’s the reason he didn’t answer Joe’s call, Joe would know immediately whether it’s the truth or not because he remembers the exact placement of his partner’s running shoes in the morning before he went to work. And when Joe related his suspicions to another friend, Joe broke down and cried. I think that’s so normal.

So, they do form attachments to other people and have a wide range of emotions but they may not show those emotions in the same way that non-autistic people do.

Lastly, CNN reports that there are 35 million people with ASD in the world today. That’s more than the population of Malaysia!

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