By Sharon Polischuk
The Show Must Charge Online Symposium (Symposium) was a virtual event that kept me fully engaged from its kick-off at 7 p.m. on Friday, July 16 through to the last presentation wrapping up at 6 p.m. on Sunday, July 18. This event for families and individuals impacted by CHARGE syndrome and the professionals who support them provided me with updates in the field of CHARGE syndrome and a “recharge” as an Intervenor.
During the kick-off the organizers mentioned many advantages to having a virtual event – sleeping in your own bed, walking your dog before and during the symposium, and reaching a wider audience of attendees from all around the world – including myself in Toronto!
The highlight of the symposium was the variety of topics presented. Participants were able to choose what presentations they would like to attend throughout the event. And, a bonus was that if I was not able to decide what presentation I wanted to attend the most, all presentations were recorded and available to watch later.
All the deafblind conferences that I have attended in person have provided me with a renewed sense of dedication to the role of being an Intervenor. This virtual CHARGE symposium was not an exception.
My expectations of the benefit of a virtual CHARGE symposium were exceeded. I expected to listen to presentations about CHARGE syndrome and to be updated on the latest research. I didn’t expect to feel a sense of community amongst the attendees, the speakers and the organizers of the event. I was happily mistaken. I “almost” felt like I was at the symposium as there was always an opportunity to ask questions and to participate using the chat box feature in Zoom.
The poster presentations, on-demand presentations, breakout groups, morning yoga, Saturday night CHARGE dance party (hosted by an awesome DJ!), silent auction, virtual photo booth, at-home activities, virtual backdrops as well as the variety of live presentations were the events that demonstrated the amount of time and energy that went into organizing the CHARGE symposium. These events kept me occupied throughout the entire symposium.
Three presentations focused my attention to my Intervenor role with Sensity. First, the poster presentation titled “Social-Emotional Development in CHARGE Syndrome” by Mallorie Beavers explored the commonly disrupted social-emotional development that often occurs in individuals with Charge syndrome. I was reminded that, as an Intervenor, I need to consider the development that my individuals have experienced in their lives in my communication with them.
The second presentation that I found applicable to my Intervenor role is “Supporting Availability for Learning for Students with CHARGE Syndrome” by Christopher Russell. The discussion evolved around the most holistic concepts that can be applied to all people – although, especially to those with CHARGE syndrome and to most students with special needs. Russell stresses that individuals with CHARGE syndrome use a wide range of communication modalities and levels of expressive communication – as with the individuals that I have worked with.
The third presentation to really catch my attention was by Chey McLaren, who is an adult with CHARGE syndrome. The presentation is titled “Time to Become Uncomfortable. Ableism: Deconstructing the Able-Bodied Perspective.” This presentation reminded me to think about the words that I use and how these words can affect individuals with CHARGE syndrome. The message that I received is that I (in my Intervenor role) need to be mindful of the words that I use in addressing individuals with CHARGE syndrome and that it is OK to have different views and to disagree. And, that a lot of communication is non-verbal by individuals with CHARGE syndrome.
As mentioned during the Symposium’s kick-off, the organizers pointed out advantages to a virtual Symposium: no freezing hotel rooms, no airplane, no suitcases … the list goes on and on. I agree with their conclusion that, in truth, there is nothing advantageous about having a virtual symposium except that a virtual event is better than no event.
Thank you Sensity for this amazing opportunity to learn and recharge as an Intervenor!