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21 Jul 2023, by Amy Sarcevic
When Matthew De Gruchy was diagnosed with Stargardt’s disease, a rare genetic eye condition, at the age of nine, he did not know that his difficulties with blindness would pale in comparison to the social challenges he later experienced.
Subject to bullying and societal exclusion, Matthew, who is now in his twenties, says he was often placed in the “too hard basket” by teachers and offered patronising learning activities. At times his school days felt like a curation of box ticking exercises, he said.
“There was definitely a flavour of ‘clap clap for the handicap’ throughout my school experience,” Matthew told Informa Connect ahead of the National Disability Summit.
“It felt as though teachers were doing the bare minimum to help me feel included. When activities weren’t accessible to me because of my blindness, I was given alternatives that were far below my ability level and didn’t stimulate me at all. I was just lumped in the category of ‘disabled’ and there was no effort to tailor my learning experiences.”
In recognition of Matthew’s displeasure with certain activities, one teacher suggested to him that he move to a “special school”, as it might be “easier on teachers and everyone around him.”
“It made my heart sink hearing this,” he said. “I felt like a complete burden to the school, my peers and society in general.”
While Matthew was fortunate enough to have one close friend that made him “feel normal”, his experience in the school system led to some dark days and a chronic battle with depression and anxiety. In a bid to help other people with disabilities avoid the same fate, he is now advocating for change.
“When you live with disability, it can be tempting just to stay quiet and avoid upsetting the apple cart. But since I’ve matured I have found my voice and I want to put it to good use,” he said.
Among the recommendations Matthew is championing for the school system are student-led modifications, personalised learning, and a non-compliance based approach to inclusion.
“My advice to teachers is, don’t just want to for people to stop talking so you can reel off a dot point list of items you need to satisfy as part of your inclusion policy. Actually listen to us and hear what our individual needs are.
“For example, my eye disease means I am much more productive in the morning. By afternoon, my eyes are under strain and things become more difficult. A quick conversation with me about my needs would allow teachers (or carers or employers) to make necessary accommodations for me.”
Like others who live with disability, Matthew also has goals that are unique to him, which he would like assistance in meeting.
“All of our lives are different, including those who live with disability. If you let us steer our own ship and just help us along the way, we’ll have a much better quality of life.”
With these adjustments in place, Matthew then encourages teachers and other leaders to take the spotlight off the person’s disability.
“That one close friend who made me feel normal barely talked to me about my blindness. It wasn’t relevant to our friendship, and that was a really refreshing thing for me in a world where my blindness was often the only thing people could see,” he concluded.
Matthew De Gruchy is a legally blind speaker and disability advocate, Helping those with disabilities to live bigger and better lives. It is Matthew’s passion and belief that everyone of all abilities have access to every opportunity in life they can imagine for themselves and to dream big – mattdegruchyvision.com
Join him for more insight into his experience navigating blindness at the upcoming National Disability Summit.
This year’s event will be held 21-22 August 2023 at the Crown Promenade Melbourne.
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