Simon Darcy transcript


Delivered by Simon Darcy, UTS Business School 9 April 2022 

Our lives as people with disability (or disabled people if you prefer) are ones that we arrive at generally without choice. 

 Our journeys can be lonely and we are the subject of invisibility, omission, othering and as the Disability Royal Commission has shown the subject of  discrimination, violence and abuse. 

 Many of us know what it’s like to be stigmatised, shamed and humiliated just for being. 

 My own journey was one where I have experienced the nondisabled world for my first 19 ½ years when in an instant my embodiment was changed some 39 years ago. 

 The early realisation was one of loss, deficit, hospitals, rehabilitation centres, doctors, treatments, interventions and other attempts to improve my abilities. 

 After 3 years I had come to the realisation that I was as good as I was going to get in my new body and this was the start of my awakening to the potential and possibilities that I would enjoy for the rest of my life. 

 I stopped averting my eye contact with people who were staring at me and instead gave them a welcoming nod. 

 When I could hear a child asking their parents a question about “what happened to him” I would respond with a smile and say that I’d had an accident but I was doing fine!  

When I could see couriers and other commercial vehicles parking in the accessible parking I would let them know it was an alright even if was just for a few minutes because those of us with modified vehicles and mobility equipment really need those spaces. 

I started back at university and found my life as a ‘mature age’ student was a good one and I engaged with the opportunities not just with study but with campus life and getting involved in volunteer opportunities and realising that my former sporting self was not going to translate into a Paralympic dream but I set other goals. 

 It wasn’t long before doors were opening, I was meeting new people, I was developing new social circles and I was starting to fight back. 

 I joined advocacy groups and was even involved in starting one, as the same time as moving into employment in the university using my environmental planning background to good use where I started to challenge those that were not considering us within their plans and expenditure, and I learned the power that we had through new legislation, human rights awareness and challenging the status quo. 

 I started to travel again and while I had never gone to the Sydney gay and Lesbian Mardi Gras, I ended up at the San Francisco one that had a real focus on pride and also found many disabled people there involved in the parade. 

 I started to understand how powerful PRIDE could be with disability community. 

 I was feeling good about myself, I gained confidence to speak out, I learned the power of evidence-based advocacy and the importance of others on our journeys. 

 Some of this came through organisations like Physical Disability council of NSW where I had some great mentors (we did not call them that in those days but that’s what they were) together with an academic group called the Social Relations of Disability Research Network where we articulated the importance of the disability social movement, we put on workshops and conferences, dabbled in the arts and showing documentaries on disability and sexuality amongst others. 

 We weren’t afraid to ruffle anyone’s feathers and to challenge the negative stereotypes and let people know that we wanted to live our lives our way and not have decisions made about us without us as the slogan goes. 

 Of course I have been blessed in meeting my wife Fiona along the way and having the enrichment of love and someone to intimately share the journey with. 

 So to finish today I challenge everybody to be who you want to be, find a way to achieve it and inform not only our communities but those that don’t understand us about why it is so important to have a vibrant, diverse community where we are all valued, listened to, and are not afraid to put our thoughts forward. 

 I was never more proud of the disability community in the resistance put up against the proposed changes to the NDIS through the Robo debt like attempt to introduce individual assessments, turn us into nothing more than a subject of an algorithm to compute an output of a persona that was supposed to be the sum of our worth. 

 Luckily we were all able to speak out and stop it from coming in. 

 But there will be challenges ahead. 

 So say it loud and proud that we are disabled people who want all the joys and responsibilities of citizenship to live work and play! Disabled and proud of it! 

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