How would you feel if someone told you your life was ordinary?
Would you feel privileged?
No? ...
You should.
At least that was the finding 10 years ago when the Shut Out Report was released detailing the experiences of people living with disabilities.
“Many said they face a constant struggle to obtain what the rest of the community would consider to be an ordinary life. They do not want special treatment—they just want the barriers removed so they can get on with living.”
Excerpt from Executive Summary, Shut Out; The Experience of People with Disabilities and their Families in Australia, August 2009
Last Tuesday was the 2019 International Day of People With Disability and it was the perfect time to see how far we’ve come in 10 years. I for one am optimistic that many important ingredients have been falling into place to see a big shift:
The final stages of the rollout of Australia’s National Disability Insurance Scheme (NDIS) are underway. This means Australians living with disability are able to make their own choices about the services they want and need, and are in control of who provides those services.
From where I sit, I believe that inclusion of all members of our society has finally become the norm in Australia. Exclusion is no longer tolerated in our society, and that’s a good thing, for all of us.
Technological innovation is making opportunities available that weren’t imaginable 20 or even 10 years ago. In my own field of reconstructive surgery I am blown away by the personalised solutions that are changing the way we now define what is possible.
I believe we all have the right to live a full and rewarding life, and technological advancements mean that the opportunity to fulfil those dreams for many more people is now within reach. Many of us take for granted things like the joy of moving our own bodies, our freedom from pain, and the simple pleasure of going about our day rather anonymously, just fitting in. Yet those of us who live with disabilities are excluded from these basic, ordinary rights and it is time that changed.
I am very pleased to announce that I have taken on the role as the Co-ordinating Principal Investigator for the Liberty Trial.
This is a world-first clinical trial seeking to find an “outside-the-box” solution for the physical disability affecting children with cerebral palsy – the number one leading cause of physical disability in our children.
We are in the process of negotiating with local ethics committees the best way to safely and scientifically prove the validity of this new therapy and more details will become available once we receive ethics approval, hopefully early next year. We were also successful in receiving a coveted Medical Research Futures Fund (MRFF) Frontiers Stage 1 Grant for this project, indicating that the Federal Government believes in the transformative power of the technology we are working on. Stay posted for news on our bid for the MRFF Frontiers Stage 2 Grant mid next year.
This is a team effort and I am working closely with a group of fantastic clinicians, researchers, scientists and engineers to make this a possibility, but there is one person who I couldn’t have made it this far without. Since our meeting just over one year ago, CEO and founder of Australian biotech company Saluda Medical, John Parker and I have been determined to bring technological solutions to those who need it most.
We’ve taken a lot of time to listen to Australian parents and people living with cerebral palsy and our focus is to provide a therapy that answers their needs. Our goal is to give a meaningful percentage of children living with cerebral palsy the opportunity for normal movement, and to rid them of the painful spasticity in their muscles that causes a large part of their disability.
And with the right support, we believe we can do this by 2025.
The consistent message from contributions to the “Shut Out Report” was the desire to have the same opportunities as everyone else for a fulfilling and productive life. I am extremely excited by the possibility of demonstrating that technological advancement can bring transformative effects to the lives of people living with cerebral palsy, and that our solution is one that will put them in control.
I’ll still be performing my surgeries but I may be a little less available to my patients than I have been up to now. Thankfully, my awesome team are supporting me and my patients so thoroughly that I am now able to split my time evenly between surgery and research. Thanks so much Mally, Mel, Hil and Martina; I couldn’t do this without you.
Like many people do, I struggle with balancing this combination of work, research and passion, with my family life. Getting home for dinner with my wife and boys whenever I can is always a driving motivator! If anyone has any advice to share with me as to how to find more hours in the day to do all the things that need to be done, please let me know ;-)