‘Wow, you don’t look blind!’: What degenerative eye disease retinitis pigmentosa has taught me about disability – ABC News

‘Wow, you don’t look blind!’: What degenerative eye disease retinitis pigmentosa has taught me about disability – ABC News

I once met a man who lives on the New South Wales South Coast, who told me about a day he spent catching some waves on the local beach.

He started up a conversation with a young family building sandcastles on the water’s edge and recounted that he had only just moved to the area and that he was going to be the principal at the local high school.

The response from the dad was surprising: “You don’t look like a principal!” he said.

It’s a common reaction to a certain way of thinking — that we always must ‘fit the mould’. But people come in many shapes, sizes, personalities, abilities, and disabilities.

This story made me think about my own situation and the set of circumstances I face as a person living with a visual impairment.

I often am told, “Wow you don’t look blind! If you hadn’t told me I would never have known!”.

Most times I laugh, but occasionally I cry — there is often a preconceived idea that a person with low vision or blindness should look, act, or feel a certain way.

But blindness or low vision is not a one-size-fits-all disability — I compare it to being on the spectrum, with many different presentations and co-morbid conditions which mean different adjustments for different people.

Blindness is also not only seeing black, as some people imagine. It may mean seeing contrasts, funky colours, or vision being blurry like looking through the bottom of a glass bottle.

In my case, I see very foggy images with no clarity, and in daylight it feels as if someone is shining a torch in my eyes.

Liliana gets around with the help of her beautiful guide dog, April.(ABC News: Nick Haggarty)

I don’t ‘look’ blind, and that can make things difficult

I have grown up with low vision as I have retinitis pigmentosa — a degenerative eye disease that has resulted in a gradual but constant loss of sight over the years. This has translated into needing to adjust to my new needs on a sometimes day-to-day basis as my sight disappears.

This can be a great challenge, especially when one day you can cross a road freely and safely, and the next day you risk being run over.

That’s why you might see me around town with my gorgeous guide dog April, who keeps me safe and mobile every day. It is amazing, though, how often I am asked if I am training her (she trains me mostly, with those puppy dog eyes!).

When I respond with, “No I am blind, she …….

Source: https://www.abc.net.au/news/2021-12-20/what-a-degenerative-eye-disease-has-taught-me-about-disability/100671660