Alisa Brownlee, ATP, CAPS blog offers recent articles and web information on ALS, assistive technology--augmentative alternative communication (AAC), computer access, and other electronic devices that can impact and improve the quality of life for people with ALS.
Any views or opinions presented on this blog are solely those of the author and do not necessarily represent those of the ALS Association.
Wednesday, March 1, 2017
I Played The First-ever Eye-controlled Instrument At The Sydney Opera House
Jess IrwinWoman with cerebral palsy, avid '80s rock fan, founder of DARE2BU
As a result of a complicated birth I have severe cerebral palsy. My condition affects my fine motor skills and causes my body to endure involuntary muscle spasms. Despite my physical disability I have always been an outgoing and creative person. Throughout my life I have been known to overcome barriers and push myself to achieve the next step at every turn. This is a tough gig sometimes, however when you don't fit into the so-called box, you strive to become a game changer. My past is full of critics who grossly underestimated my capabilities, but I just convinced myself to keep pushing forward and change their perception and help spread awareness.
For me, being independent in my business life means so much.
I can remember how difficult it was progressing through school not knowing what the future held due to having a severe physical disability. Today while illustrating what is possible to younger generations I hope to build their confidence and allow them to challenge their own barriers.
Through the use of technology, I am able to be fully independent in my work environment, from using a Macbook for my graphic design and website development, to securing my SLR digital camera to my wheelchair. For me, being independent in my business life means so much.
I have always been surrounded by music. I found that by immersing myself in beats and rhythms decreased my physical pain and lessened the severity of my spasms. One of the reasons I took up music photography was to satisfy a strong urge I had to join my musician friends on stage. Until recently I was forcing my inner musician to be satisfied with just doing event photography, knowing I could never physically pick up an instrument and start playing.
A few years ago, I was lucky to cross paths with Dr Jordan Nguyen at a conference. He was delivering a presentation about his mind-controlled wheelchair. At the time, Jordan was predominantly working with quadriplegics. I wasn't aware that he had never conversed with a non-verbal person with Cerebral Palsy before. He later confessed after our meeting his perspective drastically changed when he realised there was a whole different level of people with disabilities he could work towards assisting.
As time went on Jordan and I became really good friends. Just like me, Jordan has what it takes to break new ground and create new technology that allows others to push forward in their lives. Having very similar goals to Jordan I started becoming involved in his social business Psykinetic where I have a strong sense of belonging. The team at Psykinetic have a common sense of purpose and want to create new technologies purely to empower people in the same physical situation as me.
We went to a few music gigs where Jordan witnessed firsthand how much I wanted to perform like my rock and roll musician friend, Steve Balbi, from Mi-Sex. Every time I watched Steve on the stage, I could hear my inner musician screaming "You need to play music and perform!" However, my logical side just dismissed that idea as a result of my physical limitations. Well... that was until Jordan decided to find some way to get me on stage and enable me to physically play an instrument.
One morning I received a phone call from Jordan asking for my participation on a new project... without hesitation I said "yes". The idea was for me to play classical music at the Sydney Opera House alongside the Australia Piano Quartet, with the first ever eye-controlled instrument from Psykinetic. I hadn't used eye control technology before and knew absolutely nothing about classical music, and I was sitting there thinking how are we going to make this happen, it is classical music at the Opera House?! That is a massive thing to accomplish, however I knew with Jordan's and my determination we just might make this dream happen.
It was very strange because this iconic building was where I had watched some of my favourite musicians play in the past. Then, suddenly, I was on the same stage.
I picked up the software really quickly. However I still needed to be taught how to play classical music on the instrument with a seemingly impossible deadline of four weeks.
Time to bring in the Australia Piano Quartet. James Wannan took the lead as my music teacher. Playing at the Opera House with the piano quartet was a very surreal feeling. It was very strange because this iconic building was where I had watched some of my favourite musicians play in the past. Then, suddenly, I was on the same stage. If a standing ovation is anything to go by, I think we pulled it off.
So what is next for me? Do we have time for me to list everything? I would love to continue my work with the Australia Piano Quartet and grow my music skills, and spread awareness to what is possible with this type of technology from Psykinetic. My desire is to assist in making their technology more available so more people like myself have the opportunity to explore what is actually possible.