I’ve only lived a life with caregivers. Born with Spinal Muscular Atrophy, a neurodegenerative disorder, I was diagnosed in my teens. As the disease is progressive, it continues to weaken my motor skills, my ability to sit, stand, walk, and lie down. My entire childhood was an adventure quest of sorts to seek treatment for my disability, with my Dad at the helm, followed by the rest of Clan Irani, close friends, sundry pets, and the occasional Good Samaritan.
These quests took me to more than two dozen cities globally and helped shape my calling in a way. The fact that I was not only expected (and did) to work at my family owned bakery as a child but also seek education in institutions which catered to able-bodied folk, conditioned my world-view to that of seeking solutions rather than be hindered by disability.
A motorbike accident at age 9, left me confined to the wheelchair which evolved into a motorised wheelchair and yet I never sought to think of curbing back my hunger to glean in whatever the world had to offer. Books and movies from across the world were guzzled in glee and resulted in a B.A. in English from Mumbai. My hunger for further creative pursuits forced me to seek education abroad because I was tired of being carried and lifted everywhere all my life and so studied filmmaking in San Francisco, USA, earning another B.A. with honors in the process.
The promises of a modern, more disabled friendly India and roots in Bombay called me back and I spent the next five years working in the Hindi film Industry. While my creative skills were bar none, my physical limitations were often an excuse in the industry to show my potential on a live set, and so I founded my own little Indie-production company, Monie Plant Productions. Based in Mumbai it caters primarily towards the corporate and industrial client and I am its creative chief.
In India, though modernisation had bloomed overnight the facilities and attitude towards the disabled were severely lacking. Rather than wait for other organisations and individuals to take up my cause I actively began to make my basic places of visit, work, and leisure more accessible using all means possible. Early breakthroughs came about with the help of the local news agencies and passionate engineers who I used to ensure accessibility in major public spaces.
I continue to guest contribute in local dailies and online forums about issues of inclusiveness in Indian society which starts with basic access. My ten-part series “Mumbai On Wheels” for a popular daily earned me more exposure and much needed initiative from individuals who felt the same about the cause.
2016, and yet another adventure presented itself in the form of accessible tourism. I was recruited and helped build one of the leading accessible travel companies globally and the culmination of all the hard work was representing Asia at the International Summit for Accessible Tourism in Brussels as part of an elite panel of world tourism experts and agencies.
For four years my work took me to 11 countries and two dozen cities.
I have worked on several narrative and documentary projects in the US, UK and India, won half a dozen awards and judged on two occasions. I was also one of only five moderators for the number one short screenplay website on the internet, Moviepoet.com and a regular guest contributor/technical advisor to filmmaking forums and blogs. In late 2019, I founded another start-up “Enable R uS” which offers solutions across the board to ensure that people with disabilities can have a presence and contribution in every aspect of mainstream society.
Yet, for all the exposure I have received both here and abroad, the numerous forums I’ve helmed, articles written, films made, awards won, women dated and of course money earned independently, the one true constant need is meeting new people and passing on my life experience as I learn from their life on this planet.
I want to know your stories, play agony uncle, tech-guru, disabilities expert…what have you. I want to learn from you. I want to help you with your quests. If you will let me, I will care.
After all, I’ve only lived a life with caregivers.
Long days, pleasant nights!
-Rustom ‘Rusty’ Irani