Community Information Day 2019

Our 7th Annual Community Information Day was a wonderful success! This year’s theme was ‘Succeed, Engage, Relate.’ As in previous years, the event targeted our community of young patients, their parents or carers, and teachers. We were delighted to welcome inspirational individuals such as Emeritus Professor Ron McCallum, Mia Armsworth, Connor McLeod, Brodie Smith, Dr James Smith and Jenna Jones alongside a host of specialists in the field, who demonstrated that vision loss and blindness need not hold you back from greatness.

Emeritus Professor Ron McCallum kicked off the day with a charismatic rendering of his life and experience with retrolental fibroplasia. Growing up before the advent of comprehensive disability services, he faced discrimination from an early age. Nevertheless, he excelled in his studies, attended law school, and became the first totally blind person appointed a full professorship at a university in Australia or New Zealand. Professor McCallum expressed gratitude for the assistance of his colleagues, students, and wife throughout his studies and early teaching career, and emphasised the limitless possibilities that now come with the era of technology.

Our Education Panel on ‘managing school transitions’ featured accomplished Goalball athlete Brodie Smith along with disability educators and advocates Susan Leong, Audrey Housbey, and Claire Mahony. Brodie, who has the degenerative eye disease Retinitis Pigmentosa, detailed her transitions through primary, secondary, and tertiary education, where she is now studying to become a high school teacher. She noted the benefits of having a support team at home and in school, where teachers accommodated her condition with a personal learning program that included enlarged fonts on her handouts, avoiding the use of green pens, and extending her exam completion time. These adjustments kept her in pace with the curriculum without alienating her from her peers. Though she identified this support network as the key factor for her successful transitions through different environments, she also emphasised independent resolve in prevailing over outside judgements or limitations based on her vision impairment. The specialists similarly underscored support networks and services, advising parents to enrol their children in mainstream preschool, and contact their principals and teachers early so the child is adequately familiarised with the school (and vice versa) before classes begin. Since its inception, NDIS has opened a range of services to students including functional assessments, vision mobility specialists, personalised learning plans, and state funded assistive technology that help students succeed in school and beyond.

Jenna Jones, a Paralympic swimming gold medallist, recounted her educational difficulties before being diagnosed with cone-rod dystrophy, and her methods of adapting thereafter. Teachers initially attributed her inability to complete projects to behavioural problems, and – as a kindergartener – Jenna could not accurately describe the issues she was experiencing. Upon learning of her vision impairment, Jenna refused to accept any social constraints. With the support of her gym teacher, she threw herself into sports and thrived. Her school modified her class schedule to better suit her condition, and friends assisted her during school and social outings. Still a competitive swimmer, Jenna is now also studying to become a masseuse.

Our Braille Panel discussed the value of learning braille in the era of technology. The panel featured Connor McLeod, who successfully campaigned for tactile Australian banknotes in 2016, and vision impairment specialists Vincent Nguyen, Sonali Marathe, and Harzita Hashim. While braille may appear anachronistic in the face of ever evolving technological services, the panel argued that braille serves as a foundation for skills that will be useful throughout life. The panel agreed that it is an invaluable medium for spoken language to those with vision impairment and offers a stronger sense of independence than that of technological reading devices. Learning braille at a young age teaches children spelling and sentence structure that will come into use throughout their schooling and into the workforce. Our panellists referenced the relief braille gave to their students or patients who experienced visual fatigue. They suggested sighted parents use dual reading material that include print and braille, so they may learn and read alongside their child.

Simran Goyal spoke on the effects of ‘becoming a yes woman’ as she transitioned from secondary school to university, and finally into the corporate world. High school proved challenging, as she struggled to find people her age to relate to during a time that was punctuated with change. However, she resolved to engage in a variety of activities including touch football (playing and coaching), the debate team, and leadership positions. Between her determination to try new things and the array of assistive technology available to her, she flourished. She found university remarkably inclusive; UNSW provided her with emailed lecture notes, in-class note-takers, and reformatted study spaces – all of which encouraged her to keep going. She’s now taking on the less equipped spaces of the professional world with her ‘yes woman’ attitude and has also launched into a new hobby of photography.

Mia Armsworth offered insight on her experience as an artist living with North Carolina Macular Dystrophy. As a child, she worried the condition would inhibit her ability to pursue a career in art. However, she came to realise that everyone sees things differently, and art became a medium to share her perspective with the world. Her piece, ‘How many fingers do I see?’ is featured in the 2019 ARTEXPRESS exhibition at the Art Gallery of NSW. She is currently attending her first year at RMIT University in Melbourne, enjoying the inclusive art scene, and adjusting to independent living (with relatively few fire alarm incidents).

All our speakers and panellists facilitated thoughtful discussions, which were enriched with the participation of 120 attendees from a variety of backgrounds. (We highly recommend listening to the audio on Save Sight’s SoundCloud!) The event highlighted the importance of community networking, with many of the parents and teachers requesting to maintain contact on a regular basis. As a result, our Patient Care Coordinator (made possible by the William and Eliza Hall Trust), Lorraine Villaret, is spearheading the creation of a social media group to serve as a forum for ongoing communication.

Helpful Links

Save Sight Institute

Carers NSW Australia

Cure Blindness Australia

Guide Dogs NSW/ACT

National Disability Insurance Scheme

Royal Institute for Deaf and Blind Children

Vision Australia

 

Audio Recordings