Guest Post: Abelism? by Justin Jesudas

(Justin Vijay Jesudas is from Chennai, India and is the CEO of The Spinal Foundation. He is also a para-swimming champion and the father of twins. He first published this blog post here)

11 years ago exactly on this day, a car accident left me paralyzed neck downwards. I did not have a choice to do away with this disability and the challenges it brought along. I had to decide between being a victim of my circumstances (complain, be depressed) or being the hero of my life (script my own story). I consciously chose the latter. I was certain I will not ask ‘why me’, I’d rather ask ‘what next’.

11 years on, when I look back, here’s what this disability took away from me, what it taught me and where it miserably failed.

It took away my ability to stand & walk – the most obvious visually. It also took away  my hand functions, my bowel and bladder control, my ability to regulate body temperature (poikilothermic; no longer warm blooded), made me vulnerable to pressure sores, UTIs, cardiovascular issues, postural hypotension and most importantly it took away a career that I cherished – in the eyes of many, my disability created a conscious and unconscious bias that I would be inadequate, less able, resulting in reducing my roles and responsibilities. At that time, disability inclusion was rather unheard of (not that it is very different now). Corporate world was still grappling with gender equality.

I had a bigger fight with my body and mind and I had to prioritize. This disability taught me resilience, it taught me there is no shame in falling down but the need to bounce back every single time. It taught me that most things are difficult before becoming easy. It taught me how to adapt and evolve. It taught me to be a stoic. Imagine waking up with a frozen body everyday with nothing in your control. Imagine being vulnerable to bowel and bladder accidents, skin breakdowns and infections. Above all, imagine the attitudinal barriers and insensitivity on a daily basis in the society. This disability taught me how to deal with it all.

There are many battles I have lost to my disability in this journey, I still do. What this disability couldn’t succeed is to take away my happiness. It couldn’t crush my spirit. I am twice as strong. During COVID lockdown, I was stuck completely alone for about 6 weeks and I totally aced independent living despite my severe disability. The margin for error is thin and most times I am at the edge but I seize the day, if not, live another day to get back stronger.

Today, the medical assessment that I am over 90% disabled just doesn’t matter. The leftover 10% physical ability is just enough to drive an hand operated car, travel the world around by myself, be an elite athlete and win medals for India, surf, SCUBA dive and most recently be a parent of a beautiful pair of twins. There’s still much more to come.

When I wake up everyday, I find reasons to enable myself, not reasons to disable myself.

– Follow Justin on Instagram @justinjesudas