Living with Uveitis

Image of Jessica playing a black electric guitar outside in a garden.

There are a few things that hold a very special place in Jessica Maloney’s life; family, friends, music and her vision impaired pet bird Doody. The 32-year-old identical twin, lives with Uveitis but has steely determination, after finding herself with diminishing vision in her late 20s and overcoming the challenges that this brought.

In 2011, Uveitis was found in Jessica’s left eye and by 2016 it had appeared in the other. Since then, Jessica has faced resignation from her job, giving up her beloved Roller derby, and beginning her journey to independence as a young adult with vision impairment.

Now, she is a bold and fiercely independent woman who won’t let any vision impairment stand in the way of enjoying her passions.

Jessica has always loved music, having grown up listening to her Dad play classics like the Beatles and Bruce Springsteen around the home.

“I grew up with a Dad obsessed with music,” Jessica says. “So I guess (this love of music) was passed on. I realised recently all my holidays when I still had perfect eyesight, were all travelling to go to gigs!”

Since her teenage years, Jessica has volunteered at music festivals and concerts, and thrown herself into the music scene. She has an interest in a variety of genres but mainly listens to alternative, punk and rock music.

Music has influenced Jessica in more than one way. She also plays. She learnt to play guitar in 2014 after being inspired by The Living End. Jessica has had to give up many things because of her vision loss, but she realised that she could still play guitar.

“It hurts that I can’t play roller derby anymore. That one still stings a lot. For five years, I lived on roller skates but at least I have guitar to keep me occupied now!” she says.

She now practices sometimes up to 3 times a day. “I was really proud when I mastered ‘Here Comes the Sun’ on guitar. George Harrison is my favourite Beatle.”

While music has been a source of inspiration and passion for Jessica, it has also seen her face some challenges. Most recently as a vision impaired person attending gigs and festivals.

Jessica recalls a recent Foo Fighters concert where she experienced some unwelcome behaviour. The concert was at NIB stadium in early February and Jessica was with her friend Rachelle.

“I was wearing my Ray Ban sunglasses and holding a guide cane. Sadly, I was hassled by drunk people several times. One male grabbed me by both arms when walking past and yelled at me “you’re beautiful!”, another started asking me tons of questions (about my vision impairment) and I had to ask him to be quiet because all the while the Foo Fighters were playing, so I was missing songs.”

“Towards the end of the set, I got knocked over by a person carrying a tray of drinks and split my knee. To be fair he stopped and apologised. But due to my immune suppressants I had to go and get my knee disinfected and cleaned up. I missed my two favourite songs because I was in the first aid tent. The paramedics however did explain that they’d been dealing with many intoxicated people all night.”

Photo of Jessica playing her black electric guitar.

Jessica is disheartened by this experience, saying she’s sad to see her independence at music festivals and concerts change. She’s no longer confident attending concerts alone where she could face violence, accidents or harassment by intoxicated individuals.

“I’m aware from what happened at the Foo Fighters gig that going to gigs alone isn’t something for me anymore. If I can end up in a first aid tent when standing still with a friend, I don’t want to know what would happen by myself!”

Facing unwelcome behaviour can be a reality and not just at a music venue. She speaks of a hard truth, that she’s also faced rude or unwelcome behaviour as a vision impaired person in the wider community.

“Drunk people (at gigs) don’t have boundaries. I also don’t think people pay enough attention in general. They might be on their phone or not, and people don’t assume you can’t see.”

“Before I had vision impairment I didn’t realise there was any difference in canes, so I don’t mind so much when people ask me about mine. I am happy to help educate them”. However, she says “it’s hard when you wear sunglasses and some idiot thinks it’s his right to come up and point out to you you’re wearing them indoors”.

Jessica is also frustrated when people don’t realise that someone of her age can be vision impaired too. “A man on the bus the other day asked me if I was using a white cane for blind people. I said yes, and he said so you can’t tell me what the colour of what that man’s shirt is. It sucks, that’s just rude.”

Jessica has even faced adversity from others in the vision impaired community. “I was waiting in an eye clinic and an elderly lady came up to me and abruptly said, ‘give me your seat! I have a vision impairment and must sit while my pupils dilate.’ Taken aback, I said ‘yes sure, but I’m about to have injections into my eyes too you know’. The lady was so shocked, she said ‘Are you a patient here too?’ People can’t understand I have a vision impairment too, simply because of my age.”

While Jessica has had to face some challenges, she’s glad that she found a sense of community at VisAbility.

“It took me awhile to start going to VisAbility. I was unaware there were many different levels of vision loss and I kept saying ‘I feel guilty, I can’t go to VisAbility, I’m not blind!’ I’d been fighting my eye disease battle for 6 years before I joined VisAbility and have since met other people fighting the same fight.”

Image of Jessica wearing a sunglasses, a black shirt and shorts sitting on a log, smiling at the camera.

Jessica speaks fondly about the community at VisAbility. “Acceptance is one of the big things that VisAbility has shown me. I’ve got my social life back, and the only other person I’ve ever met who also has Uveitis, I met through VisAbility!” Jessica said.

Keeping fit is also important to Jessica. Before her vision deteriorated, her love of Roller Derby provided her with a great way to exercise and socialise. Disheartened when she had to leave her Roller Derby Club, VisAbility’s Exercise Physiology team gave Jessica a new way to keep fit and make friends. Jessica now trains up to four times a week at VisAbility, enjoying the social aspect of the fitness community when she arrives. “I got a social life back. I can go there five days a week if I want to, rather than sit alone at home.”

VisAbility has also given Jessica the tools to feel confident and independent in her community. She’s gained so much from accessing Orientation and Mobility, and Assistive Technology services. Jessica now feels comfortable using public transport and crossing the road using her white cane. She also now uses JAWS and ZoomText, accessibility software installed on her phone, so she can continue to rely on it to stay connected with friends and family.

Jessica believes it’s important to keep your passions and your interests, no matter what life throws at you. She recommends that people going through similar hard times turn to those they love for inspiration and positivity. Jessica’s pet bird Doody has played such a big role in keeping her spirits high during challenging times.

“This may sound silly, but my pet bird – who is blind in one eye – is one of the most positive and happy animals you could meet. He is a good reminder when I’m feeling down that life isn’t over!”

Overall, Jessica believes venues are trying hard with accessibility. While larger venues are fine it’s often the smaller venues like pubs that are hard to get through. “They (pubs) are crowded and it’s hard to move. But I can ring and ask them to put a chair out for me to sit on, and they will. It’s nice.”

Indeed, a woman of her word, Jessica has already got tickets for her next concert at Red Hill Auditorium. While she’s looking forward to it, she remarked “I’d much rather have a backstage pass than a disability pass, but at least I can keep going to music gigs. That’s what I love.”

Reflecting on her journey, Jessica says it’s been “frustrating, I’ve faced judgement but now I’m happy to accept it”. As the famous Beatle’s song lyrics go, “Here comes the sun, and I say, it’s alright.”

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