Of disability, of daily struggle, and societal apathy

She sits on a wheelchair having sprained her ankle yesterday at a restaurant, thanks to the uneven floor. Siti Zatiah Zainal, my sister, a 36 years old woman with 4 children. I fondly call her by her nickname, Intan, for as long as I remember. Intan, meaning diamond, in the Melayu tongue, has been living with epilepsy since she was 15.

She holds her youngest, a ‎11-month year old daughter, while we chat in the living room. Her darting eyes never leave the sight of her other distracted playful children. It's amazing to see their energy, children running about in the room, away from the blistering heat and ‎haze of the polluted Malaysian air.

Intan shares endless stories of living with disability, and how the situation impacts on her and her family. Two of Intan's children are autistic. In Malaysia, the disabled and those with disabilities are categorise as Orang Kurang Upaya (OKU) - a local politically correct word which has yet to widely replace the stigma-laced and often the degradation of being branded "cacat" (handicap).

In rapid tones, we spoke about OKU children in rural Malaysia. ‎Intan is quite a disability-rights advocate (though she denies this), extremely knowledgeable, and presently involved with a support group of twelve parents facing similar concerns. She initiated this group, all communicating via Whatsapp, a social media tool which seems more engaging than Facebook.

Besarkan anak guna pasir. Loosely translated as "Using sand to raise a child." (sarcasm). Growing misconception that parents can easily afford and access child-friendly services for OKU whether private or government-run. In this time and age, of technology and so-called good governance, oh hell it's an almost impossibility for parents to enable a conducive environment for their children living with disability. It's ghastly expensive, and often parents are frustrated by the bureaucracy and the need of their children to the simplest right, which is education.

Despite popular belief that OKU children should be integrated with 'normal' children in government-run schools, the curriculum is far from being effective for child development. And it's "easier said then done" as the increasing cost of living stunts the accessibility. Parents seem to be disillusioned by the general Malaysian dream, which in truth is catered to those who are abled-bodied, free from the stigma of being disabled. "We are struggling to be equal and accepted." said Intan, and grips the chair tightly. 

But then again, and many would agree, equality is never the strongest point for Malaysians, particularly the marginalized and stigmatised.

Intan spends money for special private education in the afternoon, and before that for a public school with facilities for special children. Then Intan and her husband spends more on physical therapy, speech classes, not to mention the living cost. ‎Barely overturning the challenges, they work hard to put food on the table, even when they live in rural Malaysia. Cost may not be as punishing as in Kuala Lumpur but expenses that nevertheless drains their coffers, slowly. 

And what of ‎the National Autism Society of Malaysia (NASOM)? Aren't they, similar to a local NGO, the Malaysian Epilepsy Society, doing anything constructive for the present and future generations of OKU? Superficial programs, such as forums and same-old workshops are available but people seem to be talking endlessly with no resources to implement meaningful community-based projects. ‎Issues, needs and concerns of the disabled community, whether among Malaysians, foreigners and stateless people in the country, have been invisible or forgotten by the masses.

At times its more of a defect in the psyche of the public, to ignore those who are physically or emotionally different. That said and done, Malaysia has hundreds of NGOs working on human rights or focusing on improving the quality of life, yet none seem to have solved the problem of the lack of specialised services that disabled children require. Services are interrelated as far as the government is concerned, but no funds (the usual predicament) and the obvious limited presence of experienced teachers and therapists hampers the need. For most activities and programs for OKU, services are limited, and as Intan says, "services are too few and far between."

So much for a modern, progressive and caring Malaysian society. When one is living with disability, the societal norms are applicable only to those who are seen as "normal" and can contribute back to ‎the country. In this simple equation, the OKU community particularly the children are left at the sickening mercy of the norms.  

April is Autism Month, and last month was declared Epilepsy month. In fact, I don't think most Malaysians care nor show an eagerness to advocate the basic rights of the disabled community. It's a fact, Malaysians are prone to being vocal when it comes to trendy, and often seen as fashionable causes, as long as it's not disability. Disability, just like orphans, are sympathetic causes, causing knee-jerk reactions and definitely not something that society wants to discuss openly. Intan reminds me that she has not seen behavioural change, and sustainable development on issues of disability. 

To me, NASOM is bloated with prestige having branches in every state but services "terlampau sikit" (extremely limited), and it's only for heavily populated areas. Typical of Malaysians to always cater to the needs of urban life. 

Intan, just like many in similar situation, faces daily ‎challenges whether ensuring nutritional needs of children are met, juggling work and family commitments, and the usual expenses in this day and age. She is overwhelmed by ‎the struggle, "especially when I pun sakit..." (especially when I'm unwell). She's been advised repeatedly by so-called experts to find a maid to help her with her daily responsibilities however Intan said, ‎"ingat so easy nak cari pembantu rumah." (Do you think it's easy for me to find domestic help?) when referring to the cost of such help. 

She states that the lack of transportation, and the high cost that follows, is a burden for them. Intan and her husband, Sahrul, also firmly believes in therapeutic care but the closest centre is far (almost 3-hour drive) and services provided are expensive. They pay RM500 per month per child for 3 sessions a week.

As Intan manages the house, Sahrul works in a city 130 km away, with his daily travelling to/fro the house. No much problems with his work however in many cases I've encountered working parents often feel isolated as they face unconvincing bosses. Time off from work commitment for parents to also focus on their families are crucial yet no large-scale evidences of corporations adopting flexible time. Most just don't care about their employees who have families that need the extra attention.

My sister is and has always been a survivor. She endures a pendulum swing of moods, a firm believer of family and gifted with crafting art. Her fits, the epileptic seizures, are somewhat manageable with medicine, and she's gotten used to them, sort of. She, like her nickname, has proven to her loved ones of her inexhaustible strength to provide the best that she can provide. As life goes more complicated with bureaucracy and higher costs, she struggles, she'll fall again, and most definitely get back to her feet.

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