Disability is not a dirty word
A contributor tells his story about how an operation that was meant to “improve his condition” left him paralysed for life.
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By Anthony Thanasayan
Last Wednesday, International Day of Persons with Disabilities (IDPD) was celebrated, with the first IDPD being announced by the United Nations (UN) nearly a quarter of a century ago.
This day was set aside to bring attention to the plight of disabled persons around the globe, which total more than one billion of the world’s population.
This makes people like me, the largest minority group in the world. And the majority of disabled persons, according to the UN live in developing countries like Malaysia.
Ask any disabled activist or handicapped organisation and they will tell you that the best strategy for creating a better world for us is to advocate our rights and needs among the public.
On IDPD, I found myself doing just this very thing.
I was invited to KL to speak at a luncheon organised by UNICEF Malaysia.
My topic was on disability, of course.
My job was to sensitise about 30 members of their staff, of whom some were foreigners. I was asked to share what it means to be handicapped and what it’s like living in our society.
The first thing I decided to do, was to do away with statistics.
After all, all of them by virtue of their work were practically “gurus” in the science.
And I didn’t want to bore anybody and have them dozing off midway through my talk.
Thankfully, that was far from the reaction I got.
From start to finish, throughout my 60-minute presentation which included a short video on my service dogs and question and answer time, they were all ears and smiles to everything I had to say.
I shared with them about my early days of disability.
I told them that after I was born, and the moment the doctors found out I had spina bifida, their prognosis was that I wouldn’t make it past my first birthday.
“Well, lo and behold, here I am in front of you after my 53rd birthday, and all those ‘prophets of doom’ doctors are now dead in their graves,” I declared to the crowd.
It was a great opening to my speech. One which brought peals of laughter from the audience.
I told them how difficult it was for me to grow up as a child with a disability.
My primary school in Klang, Selangor, was reluctant to enrol me because of my walking difficulty. (I walked with a severe limp on my right leg.)
Finally, the authorities relented but by then, I had to start at the second grade since one year had already gone by.
However, two years later, a surgery performed on my good leg which was meant to “improve my condition”, left me permanently paralysed.
The orthopedic pediatrician who performed the surgery on me insisted that it was not his professional skill that went awry, but my body that had somehow “failed to respond to his procedure”.
For some weird reason he kept on telling me that he would love to “have my legs chopped off and put me in a flowerpot”. He said that with my “lovely smile”, I would look very good in it.
That was the first time in my life, that as a boy of ten, I was introduced to what a “sick joke” was.
The doctors also taught me a lot of “dirty words” during my three-months of hospitalisation.
This was done frequently when I became a case study for scores of medical students during exam time.
At times, there would be as many as 12 to 15 persons present at one session.
They would surround my hospital bed and introduce some pretty nasty words to me – words I had never heard before.
Words like “deformed hands”, “crippled feet, “not normal”, “hopeless”, “ugly” and more were verbalised, before they poked my body with blunt and sharp objects to make their point.
I was left feeling like a creature from outer space that was left to live out my existence.
Thankfully, all that changed when I went to the US for a disability leadership course run by disabled persons.
There, I took my very first public bus despite being in a wheelchair. I also went river-rafting and skiing in a speedboat on the sea – strapped and seated in a special wheelchair-ski.
I also witnessed canines assisting disabled persons (minus the dirty words).
Unlike healthcare workers, the special dogs were totally non-judgmental, full of positivity, and always enthusiastic about helping.
The UN group loved the special video I showed them of my canines assisting me at home – pushing my wheelchair, picking up my mobile phone, and even helping me in the bathroom.
Everyone watched with rapt attention. The meeting room was filled with plenty of warm smiles all around.
The question and answer session said it all.
Instead of asking me about technical stuff, they wanted to know what made me tick in my unique mission every day. They also wanted to know how I managed to train my dogs to be service canines.
I told them it was my Doberman, Sheltie and Alsatian that inspired me the most, and effectively kept depression away.
I told them it was my American disabled friends who were service dog trainers themselves, who taught me how to work with canines to help and provide therapy for the disabled.
All this was done through the power of the Internet, which by the way, is one of the themes for this year’s IDPD.
I don’t recall ever being in the company of so many supportive people in recent times.
And most importantly I had great fun!
Anthony Thanasayan is an FMT columnist
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