Enable Singapore Initiative – Mano’s story

 Mano Karan

Helen Keller once said “It has been said that life has treated me harshly; and sometimes I have complained in my heart because many pleasures of human experience have been withheld from me…if much has been denied me, much, very much, has been given me…”

I realized at 44 how true her words are. That’s when I became paralyzed from the chest down due to Transverse Myelitis (TM). A disease so rare that 5 in a million get it, say the specialists. So, I must have been super fortunate. Yes, in some ways I certainly was. Truth be told, I am about the ideal person to get this disease. Why?

By 44 I had experienced many milestones in life. Strong beliefs in the Creator. Played my favourite game, soccer, for about 30 years. Ran 2 full marathons with the best time of 3 hours 15 minutes 16 seconds.  Did voluntary work for more than 10 years. Married at 26 to a woman whose value I did not fully appreciate till the onslaught of TM. Had a beautiful daughter at 33. Great career in sales followed by over 15 years in teaching. Close ties with extended family members. Cultivated long term, meaningful relationships with many locally and abroad. Had a great support mechanism. Without the above, I could not have coped with TM all these years. But coping with TM is really not what I want to talk about. It is to me an absolutely boring subject.

I did, however save my first-ever posting on social media to talk about my experience as a person living with disability in Singapore, along with my approach to it, my accomplishments, and what I hope for the future.

In the beginning I thought that Singapore is a great place for people with disability. In many ways this is true. The government is consistently upgrading the infrastructure to make access easier for people living with disability. They are also pouring millions into advertising the need to be considerate and conscious of people with disability.

Yet, every day I have to compete with my healthier countrymen to race towards the gantry of the train stations and elevator doors. The lifts in the train stations break down countless times. Smirking groups of school girls come out of wheelchair accessible toilets with refreshed faces and gel styled hair, or sensor operated disability toilet doors open when they should shut, and close when they should open. Cinemas have seats for people with disability that are strategically located directly in front of the screen, ensuring an uncomfortable viewing experience along with a neck ache after.

My disability enabled me to observe, acknowledge and associate with a marginalized group living on the fringes of our self-absorbed society. Their disabilities have cost them dearly. Living a life of constraint, not entirely due to their physical incapacity but because of being excluded from experiencing the joys that the rest deem only they rightly deserve, simply for being able bodied. There are still many Singaporeans, who, with our undignified cold stares and cautionary looks, stigmatize and reduce a wheelchair user’s bodily defect to some form of mental dysfunction.

Surely, these cannot be the attitudes an aspiring first world society should espouse. I strongly feel that we must stop identifying people by their disability and ostracizing them, after all, we are all have disabilities in one way or another. A person first approach has to be cultivated.

So I, as a diligent and contributing member of Singaporean society, did what we are best at: write and complained. After hundreds of verbal and written complaints I was left frustrated and disappointed. Then, one night 2 years ago, Benjamin Franklin came into my dreams and said: “Any fool can criticize, condemn and complain – and most fools do”. So from then on I decided to stop being a fool and start contributing to a better understanding of the situations faced by people with disability. After much study and reflection it dawned on me that a complete behavioral change towards people with disability is needed to take root among the Singaporean populace.

Building swanky infrastructure for the rapidly growing aging population and people with disability is not sufficient to address the problem. According equality and equity to our country men with disability should mean more than infrastructure. We need a change from within, a change of hearts and minds, of attitudes and perception.

To put it in a nutshell, the hardware is being provided by the government, but the software, awareness and education needs building up. Attentiveness to people with disability needs to be imparted speedily, and instilled at an early age. Educational institutions are places where these qualities could be inculcated into young Singaporeans. As an educator with years of experience, I could visualize how crucial educating the young of Singapore to be aware of people with disability will be.

Once this idea was crystallized, I started looking for partners to assist me with the tools and know how to inform and motivate future Singaporeans. I wrote countless emails to almost every organization dealing with disability issues all over the world.

I got only one positive reply. It was from, a young enterprising Vietnamese Australian and CEO of Enabled Development. As winner of the ACT Young Australian of the Year 2014 Award, he assisted me in focusing my objectives. Lots of discussions and research followed. Through workshops and hands on training sessions here and in Australia he honed my skills as a Disability Advocate and to establish my company Dignitas SG.

So on this day, the 3rd of December 2014, the International Day of People with Disability, I am pleased to undertake this journey to encourage a better understanding of people affected by disability, along with helping to make the main stream public more alert of the well-being, dignity and rights of people with disability.

On November 28, 2014 Singapore’s Prime Minster Lee Hsien Loong said “”Our society should value every person, no matter who he is, what he was born with, or without, because every person matters to us.” He also reminded people living with disability of what Singapore should aspire to be: a place where “every Singaporean counts”, and where people with disability have the privilege to inspire others “with their grit, determination and passion”.

Not a bad idea to work towards, don’t you think?