My brother has a learning disability. So it was with vested interests that I decided to spend three hours of my Sunday afternoon to attend the Forum on People With Disabilities Act 2008 organized by the Bar Council of Malaysia. Driven by an obliged sense of responsibility, I was enthusiastic about learning more about the situation for PWDs and what the ‘powers that be’ intend to do about it.
I should have guessed that it would not be a very merry event by the time lunch was served, when Sherrie told us that there will not be a bus transporting us to the Bar Council for the forum. Mind you, the decision to attend the forum was not at all a natural one for me; it was an especially sunny Sunday afternoon, the type for which I am certain afternoon dozes are dedicated. Include other temptations into the equation- Novotel’s gym and swimming pool, watching a movie and/or hanging out at the Pavillion- I suppose going to a three- hour forum is rather far down the list of things to do for the average person.
Nevertheless, I continued to feel like I should attend the forum. Perhaps it was the years of watching my mum trudging up, down and around the bureaucratic ladder in order to get the bare minimum for my brother as he was growing up. Perhaps it was also due to the guilt I felt for the years of having treated him like a dirty little secret. As much as I am ashamed to admit it, I think it is in dire need of being said- it has taken years for me to fully accept my brother as part of my life. And this is true for almost all PWDs, mostly for the fact that people, especially family members, do not know how to deal with them. Going about with him, I have seen a variety of reactions ranging from warm, to downright disgusting. But there is one thing that has kept with me all these years, something that was also said by Prof. Dr. Tiun Ling Ta, President of the Persatuan Orang Cacat Anggota Malaysia during the forum: “We do not need your sympathy, we need your empathy.” Sympathy does not credit the incredible efforts PWDs make in order to achieve the vague semblance of a normal life.
These days I avoid telling people about my brother because I think the instinctive sympathetic response is an insult to him. It is always very interesting when I do tell people about him, because there would always be this awkward sounding ‘Oh..’, the type you say when you have stumbled upon a problem that is immensely private and to which there is no solution. So then I would feel the need to justify my brother’s condition: “He isn’t that bad; he can get around on his own; he’s very good at computer things.” And the usual response would be, “Ah, that’s good…” The conversation would be like two people dancing on a floor of glass shards.
My brother does not need your sympathy. He needs you to understand that he can get things done on his own, with a little help. Do not condescend him, and immediately assume that every possible thing needs to be done for him. He loves to talk, but only when people bother talking to him. He is a collector of sorts, and is an avid gamer. He is a person. He could be you.
Walking out of the forum that day, I was hugely disappointed. A lot of attention was paid to the injustices faced by the physically disabled, but not more than a fleeting mention of the mentally disabled. The mentally disabled have the least chance of advancing themselves due to the impossibly adverse conditions inflicted by the Malaysian education system. Sure, there are special education classes and special education schools, but it would be an understatement to say that these are ill equipped to handle children with mental disabilities. Qualified teachers are a rarity, and even the ones that are available cannot handle the varying multitude of mental disabilities in children. Every child requires a different approach and even between two children of the same handicap there can be different levels of progress. The biggest discrimination against mentally disabled children in the education system is the syllabus. Suthen Thomas in his speech as Member of Opposition in the Bar Council Human Rights Debate finals said that the disabled do not need a quota in tertiary institutions because applicants are judged by the objective tests they take during SPM or other qualifying tests. To this, the appropriate question would be, at which point in his life is a mentally disabled child capable of answering SPM-level questions? I can tell you for sure, that it is rarely within the 11 years of primary and secondary education that the government provides for us all. So the many mentally disabled children who do attend secondary school fail their SPM or simply drop out. In either case, the child does not get the accreditation he needs to get tertiary education. In this regard, mentally disabled children do not even get a chance at tertiary education because the system has already filtered them out of the running.
Hearing the emotional pleas of the speakers that day, all I could find myself thinking was, “At least you can fight for yourself.” Prof. Dr. Tiun Ling La also said in his speech that relevant research findings are rarely brought to the public so the government ends up looking to the people for the right thing to do. Looking at how underrepresented the mentally disabled are, will the government even work towards such changes for them?