Originally published in the Trinidad Express , December 11, 2017
WHEN Laura and I learnt that we were expecting a son, it was a real joy. I had all these thoughts: me and my boy… we will ride around together, kick ball, fly kite, go fishing, draw, make music and write stories. That was what I was most excited about – that I would have a little partner to ride with.
I was getting a second chance to have a family and I was going to make it right by him. I made a promise in my heart and in my soul that I would do whatever I had to, to support him and his goals. I had aspirations that he would live outside the status quo, be a game-changer and that he would create a world that he would like to see.
When we got the news that Isaiah would be delayed in his development due to Incontinentia Pigmenti a rare gene disorder, I felt my heart hit the floor and flew straight back up to my throat and it wouldn’t move. It just stayed there. I asked myself: How am I going to deal with this? But when I looked across at my wife I realised that she was even more devastated.
She went into this mode for a while, grieving, it was as if someone had died in the family. I was still reeling from my father’s passing, so I just tried to be strong in that period, giving her the support because I knew she could cave. I felt that she could have fallen apart.
In my first marriage I think I let down my kids so when I got a chance to do it again, I made a conscious decision that I would represent. A few years had passed after Isaiah’s birth, when I realised that I was very angry with God.
I thought to myself: Now that I said I was going to do this the right way, you come and give me a child with a disability, something I would have to walk with for the rest of my life! Is this payment for what I did the first time around? This was what I wrestled with.
I had just made my first feature film and I had simultaneously written my first novella published by Macmillan Caribbean. These two things were happening at the same time I was crashing and while I was crashing, Laura started to crash! This was three years into Isaiah’s life. I had to drop everything and jump in and take over with Isaiah.
Having a child with special needs does put a strain on families. You are not able to pursue all your dreams and goals and because of that you can become resentful and feel trapped. Financially it is a hell of a challenge. Fathers of children with special needs need support too. The women sometimes have these vast networks of associates and friends who rally around them.
I drop, roll and go again. I never lie down for too long to ask myself too many questions about any one thing. We went on to have two girls. People thought we were brave to try again…
About 2009 I went back to school to pursue my Masters in Creative Design Entrepreneurship, because I wanted to explore creative, for-purpose methods, to create assisted living and assisted work opportunities for persons with disabilities. The question I asked myself was “What will happen to my son when I kick the bucket?”
I didn’t want Isaiah to be a burden on anybody. I have a vision of him being in a “community” supported by for-profit businesses with for-purpose hearts, where he is well taken care of and respected. For that concept to take root in our society in the context of who we are, I learnt that we would have to do some serious awareness campaigning and educating the people. That is how Cause an Effect was born. We create awareness campaigns to transform perceptions about disabilities.
I have a problem with the way corporations see NGOs – like we come to beg. Corporate Social Responsibility in Trinidad and Tobago, functions at the lowest level that it’s capable of. There’s so much more to it and if explored honestly and purposefully, it can transform our economy and our society. The world has changed and this bubble that catches light and projects rainbows, that we are caught up in, will POP! Socially conscious business is the present and future of this world! Governments? Nah!! Governments and socially conscious business? A resounding yes!!
My biggest respite is pouring my whole creative self into work for Cause an Effect, our partners and any organisation that has a transformational type or socially conscious story to tell. I always felt like I was fighting for something, some purpose. From my days in primary school when I got into fights, it was to defend the smaller boys being picked on by the bullies.
In St. Mary’s College it was a priest who picked on the smallest student in the class and slapped him up for no reason… I had my own challenges with cocaine and other drugs and overcame them by writing the song “White Horse” which I hoped would help others and be a deterrent to other inquisitive minds. Only recently, I realised that creating a better future for my son is my purpose.
This is the fight I have been gearing up for all my life. I refuse to accept that I have to live, work and contribute to a system that ignores my son and other persons with disabilities. If that is the case I’m going to create my own system and that is the essence of who I am.
The production of the Lions segment of the Lioness Project series, highlighting the experiences of ten men in the disability field, is supported by the Cause an Effect Organisation, the Massy Foundation and A Very Special Disabilities Forum.