by Carla Caruso

Last year, we spoke to Bethany Cody about her push to get the River Torrens footbridge to light up for Rare Disease Day.

And this year – on February 28 – the lights will again turn purple, white, and green for the cause, thanks to the 26-year-old’s advocacy.

Bethany has the rare genetic disease, retinitis pigmentosa (RP) – a degenerative condition in which the back wall of the eye (retina) is damaged. (Big Brother’s Reggie Bird has the same condition.)

We checked in with Bethany to see what else has been keeping her busy lately – such as, getting a new tattoo with a deeply personal meaning – plus asked about her favourite spot in the Park Lands. Here’s our interview.

In her words, Bethany explains the new ‘garden art’ on her arm:

I’ve been wanting to get another tattoo for a while, and I knew I wanted to incorporate an eye to represent my vision loss journey, and I also knew that sunflowers were the internationally recognised symbol for invisible disabilities.

This was started back in 2016, at [England’s] Gatwick Airport, as a way for staff to easily and discreetly recognise passengers with non-visible disabilities who [might] need help navigating the airport.

It’s since been utilised globally and in numerous industries and situations. The sunflower was chosen for its joyful, bright appearance, to represent growth, happiness, and strength.

In this way, my tattoo represents my desire to move forward, to acknowledge what’s happening to me, what I’ve lost, but also what I’ve gained.

There’s also another personal reason behind the tattoo…

It’s especially personal because my tattoo is a scar cover-up. In high school, I struggled with self-harm, and then again after my Retinitis Pigmentosa diagnosis in 2018.

Instead of looking at my arm and remembering those dark, dreadful moments, I [now] see something beautiful that reminds me of my strength and encourages me to keep growing.

It was perfect timing, getting my tattoo in February, because it’s known as Low Vision Awareness Month, or Retinitis Pigmentosa Awareness Month, aiming to create awareness of the different causes of blindness and low vision, to drum up community support, connect people, and advocate for greater accessibility in our world …

Self-harm remains a taboo subject. I believe there’s a lot of judgement around people who self-harm … I can’t speak for everyone, but I felt a great amount of guilt for self-harming – for permanently marking myself, for not feeling strong enough to reach out for help, for not finding the right words to express what I was feeling, for not turning to my family and loved ones for help – which fuelled my actions even more.

It wasn’t because I didn’t feel like they cared or could help me, it was because I felt worthless and didn’t want to put my problems on anyone else. But the pain had to go somewhere.

When you’re in such a tumultuous headspace, it can be really hard to see clearly, or understand the consequences of your actions, and the last thing you need is to be judged or criticised. I believe [the subject] absolutely needs to be discussed more, in safe and respectful ways.

On losing her vision

Going blind has been one of the hardest things I’ve ever gone through. It’s taken so much from me, especially my independence with driving a car.

But the more I live with my blindness, the more I see that it’s actually given me so much, like new friends who understand exactly what I’m dealing with [and] new perspectives on life and what’s important to me.

I’ve been given new tools for my independence like my white cane (who I’ve lovingly named ‘Pumpkin’, because I started orientation and mobility lessons in October 2022, around Halloween). I’ve learnt to embrace the unknown and understand that acceptance and grief will always fluctuate for me.

Having a strong support system and community of people has given me so much joy and reasons to look forward to my future, even if I don’t know what that will look like for me – if I’ll be completely blind in my forties, like my ophthalmologist hinted at, [or] if I’ll still have light perception in my eighties.

Going blind has shown me my strength, perseverance, and my ability to think outside of the box and find solutions – like how to get about at night when I’m severely night-blind (by using a powerful torch).

In the beginning, I thought going blind was the end of the world, that I’d never be the same person again, that I’d have to stop doing the things I loved - like cooking - but it’s just not true. We find ways to adapt and overcome.

Bethany’s preferred bit of green space in the city

My favourite park in the Adelaide Park Lands is Rymill Park [Murlawirrapurka / Park 14]. It’s the first mini oasis of green you see as you enter the city near East Terrace; it hosts the Fringe; it’s scattered with stately, leafy trees; and it’s home to a plethora of birds and wildlife.

As football season approaches, my partner and I spend more time in the city and stroll through the Park Lands before games.

They’re so important to break up the concrete jungle of the city. Even if I can’t see their beauty or sprawl like I used to (having no peripheral vision and tunnel vision makes it so I can only see what’s directly in front of me, and I have to scan my environment, piece by small piece, to get the bigger picture), I can still smell the grass and flowers, the trees and the dirt, and hear the birds and laughter from kids playing, the splash of water from a pond or the River Torrens. I can feel the temperature drop down by the water.

Anytime we’re in the city, we make a point to stroll through the parks. It’s a great way to ground yourself, slow down and take in your surroundings with all your senses.

They're also great spaces for a picnic or lunch or catching up with friends and family.