Vision impaired young people call for change in narrative to avoid stereotypes, stigmas – Ausnew Home Care

Vision impaired young people call for change in narrative to avoid stereotypes, stigmas

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Alana Tiller is a 20-year-old university student and avid hobby shooter.

She also lives with Oculocutaneous albinism, which often causes progressive vision loss.

She now has "around 3 per cent vision on a good day".

Despite the challenges this brings, the psychological sciences student is clear; she does not want to be "cured".

"I actually think that my disability has shaped me into the person I am today, and it's not something I absolutely hate about myself," she said.

A close-up of a young person's face.
Alana Tiller says her disability is 'something really cool'.(ABC News: Lincoln Rothall)

"It's given me so many experiences in my life and it does certainly come with its challenges, but I think the challenges more come from society and how society has been built, not so much my disability.

"My disability is actually something I really quite like about myself, and I don't think people hear that enough."

While many assume people living with disability would prefer to be "cured", University of South Australia associate professor Caroline Ellison said attitudes like Ms Tiller's were common.

"Many people living with disability have that attitude like, 'I have a disability but it doesn't define me, it's not everything about me'," she said.

A headshot of a smiling woman
Caroline Ellison says disability is not the issue, rather it's what society does that 'makes life difficult for people'.(University of South Australia)

Ms Ellison specialises in social sciences, aging and disability, and said difficulties often stemmed from the barriers society put in the way "to allowing somebody to have an ordinary life".

"People live with impairments, people live with difference and diversity and people's bodies do different things, but whether or not they have a disability is about society and the barriers and challenges that we impose," she said.

Ms Ellison said the word 'cure' could be a loaded term.

"It's loaded because it sends a message that living with difference – living with a body that does things differently, living with a body that needs adjustments, needs society to be inclusive – is a bad thing," she said.

"I find the word 'cure' one that I'm challenged by because some people I know – and I want to be inclusive of people's choice – would like to remove the difference, the diversity, impairment that provides them with challenges or stops them perhaps from doing things or having a life they had pre-accident, or pre-impairment.

"But I also know a lot of people who are really offended by that."

Melbourne man Matt De Gruchy at a lectern.
Matt De Gruchy said stereotypes and stigmas were a hindrance on his journey to acceptance.(Supplied)

Public speaker and disability advocate Matt De Gruchy said he had a "bit of contention" about the term "cure".

He was diagnosed with Stargardt disease, a rare genetic condition that causes central vision loss, when he was nine years old and he struggled with acceptance for years.

"I really did shut down, I really tried to hide my disability from everyone, except for my initial family and maybe one or two close friends," he said.

He said he "wished for a cure" when he was young but now, aged 27, he has a different opinion.

"Being legally blind or having low vision changed my life in a profound, better way," he said.

Mr De Gruchy said stereotypes and stigmas about vision impairments "really frightened me as a youngster".

"I do think some of the stereotypes and maybe the opinions of others that were projected on to me as a young person made it so much more difficult to get to a place of acceptance because that was really hard," he said.

"But once I did get to a place of acceptance, that's when my life changed."

A portrait photo of Melbourne man Matt De Gruchy.
Matt De Gruchy said he had 'many parts' to his personality and 'being blind just happens to be one small aspect of who I am'.(Supplied)

Mr De Gruchy said while the "narrative is changing", greater awareness of what it is like to live with vision impairments was needed.

"You can live an amazing life with low vision, and a lot of the stereotypes, a lot of the stigmas that really frightened me as a youngster, that's not even a thing at all," he said.

Ms Tiller also hopes the conversation shifts.

"I think people need to hear that it's something you can love about yourself and you don't want to be, in quotes I guess, 'cured' or 'fixed'," she said.

"It's made me who I am."


Source: ABC

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