APRIL 1 — At the age of 21, a few weeks away from my university finals, I was diagnosed with Dyslexia, a specific learning disability.
My professor had questioned why the written text of my dissertation did not match up to my research and verbal abilities. She wondered why, although I spoke like a 1st class student, I was only scraping by in exams and essays.
I had been asking myself the same question for years, frustrated that while I worked harder than almost anyone I knew, I was never able to make my written work reflect what was in my head. In exams, I always struggled against the clock, rarely managing to complete all the questions because of the length of time I took read and re-read questions before I could answer.
Fortunately my university professor insisted on referring me for an assessment. The results were clear and shocked me profoundly. My IQ was high but my dyslexia was severe. I was now officially a person with a disability.
To say I was upset would be an understatement; my confidence was shattered. I felt deflated. I didn’t wish to be singled out as different among my peers. But most of all I was angry. I was angry that I had struggled through 18 years of education before someone finally recognised that I was neither stupid nor lazy.
There was nothing lacking in my intelligence. I had been held back by a disorder that made every aspect of learning a challenge. Had I been diagnosed earlier, I could have accessed additional educational support and a number of special grants that would have levelled the playing field and helped me reach my full potential. But here I was, at the very end of my education, realising just what I had missed out on all those years.
So what is Dyslexia? Dyslexia affects the way the brain processes written and spoken language. It affects one’s ability to read, write, spell and even speak. A Dyslexic’s memory and learning mechanisms function in a very different way.
If a child has Dyslexia, they won’t grow out of it. It’s lifelong. But it isn’t a hopeless scenario either. A Dyslexic can learn to manage the disorder and to succeed in all walks of life, including academia. It all depends, however, on the level of support and information one receives. Without that, the journey is very difficult — and many fall by the wayside, convinced that they will never be able to succeed in education or their chosen career.
Eventually I learnt to develop strategies to help me overcome (or more accurately) bypass the things I couldn’t do. Eventually I accepted that there are some things I will never be able to do, like learn the alphabet, tell the time properly, know my right from my left, or read out loud. With age, experience and confidence, I’ve realised that not being able to do these things does not embarrass me. I tell other people straight out and if they have a problem with it — it’s their problem, not mine.
Unfortunately, most children (especially those with a disability) don’t have these attributes on hand from an early age. With the benefit of modern knowledge about Dyslexia, children should not have to struggle alone. Society should provide the support network they need so that they have the same opportunities as every other child.
I haven’t shared my personal story for sympathy or praise but because it’s time for Malaysia to wake up to disability! We talk of diversity. But diversity does not just refer to issues of race, religion and gender. It also means that we need to be inclusive of a whole range of disabilities that exist so that everyone has equal access to opportunities. I shared with you just one example of a disability that can be invisible or misunderstood. There are dozens of others out there, some obvious, but many not.
In Malaysia, disabilities are divided into seven categories: hearing, learning, mental, physical, speech, visual and multiple. Each category covers a huge variety of disability types, over half of which cannot be identified at first glance. For me, the label ‘disability’ just doesn’t make sense. None of us is able to do everything.
There are things that we all can’t do. Although I understand that categories and labels are useful and necessary, I prefer to call disabilities — ‘different-abilities’. While I can’t do things that many people can, as my brain works differently, I can do some things that most people can’t. I’m still discovering many of my ‘different-abilities’; it’s a lifelong process.
Being different from the mainstream undoubtedly has its challenges but it is important, however, that we inform ourselves about disabilities (‘different-abilities’) and the many forms they come in, so that we can support our children to thrive and achieve.
I’m saddened but unsurprised to report that Malaysia is falling behind in meeting the needs and upholding the rights of children with disabilities. Although it has signed up to and ratified a number of United Nations Conventions, such as the Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities, children with disabilities have no legal acknowledgement in our Federal Constitution.
In other words, while it is not ‘legal’ in Malaysia to discriminate against children with disabilities, nothing is done to prevent discrimination either. Although children with disabilities are mentioned in the national policy for children, the current Child Act (2001) and the Disability Act (2008), the provisions are not adequate and strong enough to meet the whole range of development and protection needs of children with disabilities.
There remains a huge gap in fulfilment of the rights of children with disabilities in Malaysia, and a disjuncture between what the government has publicly and globally committed to versus what it is actually prepared to do. More action and less talk is needed!
It is not all doom and gloom, however. A wide range of current provisions already exists in Malaysia. On a practical level, the government has pledged to provide Special Needs Schools and designated mainstream Primary/Secondary Schools for children with disabilities. This is taking place, although not at the rate or capacity that would allow every child with a disability to access education in the most appropriate ways for them.
There are many reasons for this, primarily lack of funds, knowledge, priorities and commitment, but one excuse commonly raised is that we do not accurately know how many children actually have a disability. Many are not being identified or registered by their parents/carers and it’s understandable why. We all know examples, probably within our own family and friends, of children kept at home or whose conditions are unacknowledged because of fear of stigma, discrimination and prejudice. No one wishes their child to be the object of hurtful and personal comments or to be stared at. As a result those children are overlooked.
In addition, there are instances of schools using the distinction of child with disability as a flag to move that child out of a mainstream class and into a Special Needs environment, regardless of their ability to intellectually compete within their peers. This is leading parents to delay registering their child as having a disability because they know their child wants to and will thrive better in a mainstream class.
It is very important that children with disabilities are identified. Tangible benefits do exist in Malaysia both for children and parents/carers. Not only does registering raise awareness, but it also highlights that children with disabilities are in fact a large percentage of the nation and should have equal rights in our inclusive Malaysian society. In identifying yourself or your child as a person with disability (Orang Kurang Upaya), one can also gain access to a large number of financial support, equipment and resource-based benefits.
These include grants, access to assistive devices, educational aids, tax and fee exemptions, utility reductions, transport concessions, and much more. Taking into consideration the challenges and marginalisation that children and families with disabilities face, it is vital that we promote and encourage this group to access the things to which they have a right and that are already available!
In addition, there are many amazing non-governmental organisations (NGOs) in Malaysia working hard to make a change by providing services to, or advocating on behalf of, children with disabilities. A partnership was set up in 2014 which includes NGOs, activists, parents and Unicef Malaysia, to support and unite the work that is being done all over the country.
The Malaysian Partnership for Children with Disabilities (MPCwD) is a network that strives towards creating an inclusive society for children with disabilities. It collectively shares useful information, discusses pertinent issues and advocates on their behalf. It also aims to provide a platform for children with disabilities to voice their feelings, thoughts and opinions.
What else can we do? Our society needs to challenge its mind-set and make a change. This goes for both people with disabilities and those without. We need to be more open about what makes us different so that we can understand and celebrate our diversity. At the same time, we need to acknowledge the things that we have in common. Admitting our similarities can be more challenging than we might think. In the process of admitting what we share, we are forced to confront the things that make us feel uncomfortable i.e. our differences. We also need to unite, to take action and to stand up against what is unjust.
At the moment our children with disabilities do not have equal rights. They are socially and institutionally discriminated against at every level and do not have access to the same life opportunities that other Malaysian children enjoy. That is simply not right, and it is up to us as a society to redress this wrong.
The only way to make this change and create an inclusive society that we can all enjoy is if we unite and do it together. We need to start by choosing to be informed, being prepared to understand and daring to challenge our prejudices. Let’s embrace our similarities and celebrate our differences!
* Zoe Gan is the Disability Consultant of Unicef Malaysia.
** This is the personal opinion of the writer or publication and does not necessarily represent the views of Malay Mail Online.