Brent’s diagnosis and journey

Brent was diagnosed with Stargardt’s Disease in Grade 11 of high school, but his symptoms and the journey of getting diagnosed started 8 months prior.

What started as challenges seeing the whiteboard in classes progressed to a whirlwind of tedious and lengthy tests—some of which went for 10 hours straight—before doctors finally uncovered that he had a rare degenerative disease as a result of a gene mutation.

It only took 5 minutes to confirm his condition once all the testing was done, but Brent says the hardest part was feeling like he was in limbo.

“I knew something was wrong, but not knowing whether it was my eyes or my brain was really hard, and to have the condition confirmed in just five minutes after months and months of testing was frustrating.”

The first few years

Like many of his school peers, Brent moved to Brisbane for university, determined to embrace his newfound independence. But his rapidly declining condition presented many initial challenges.

Despite having access to NDIS funding since Grade 12, Brent opted not to use it for the first four years of his diagnosis as he was hesitant to lose his independence. It wasn’t until his second close call with a Brisbane city bus that he finally decided he might benefit from support (joking that he didn’t want a full body cast to accompany his vision loss).

That’s when Brent turned to Guide Dogs as a starting point, purely because they were the only organisation he knew of that offered vision-related supports.

Brent’s goals back then vs today

The majority of Brent’s early supports were focused on capacity building, in order to lay foundations for the future. One of the key supports he credited was orientation mobility.

“Before I got my guide dog, I did a lot of training on orientation mobility, which included learning how to navigate unfamiliar areas, learning braille and even cane training.

Researching for uncontrolled crossings and consistent pathways is a lot of tedious work, and it de-incentivises you to go on spontaneous trips. So, a big thing for me was learning how to navigate familiar routes safely, as well as what to do in unfamiliar areas and how to process my surroundings without visual cues when there’s no prep time.”

Brent also began integrating psychology supports to build mental resilience for rapid changes to his condition.

“Every time my condition deteriorates, the stages of grief begin anew. But I’m proud that I can process my feelings in short time now, as opposed to the beginning where it took me years to reach a place of acceptance. I realised that there were things I could alter or do without. Life’s an instruction manual, but I was reading it in the wrong language.”

One of the biggest challenges Brent faced at university was adapting his learning style, since he was a visual learner before his diagnosis.

“I worked closely with an Occupational Therapist, who helped me find adapted ways to study and pass my courses. Technology helped a lot, and one thing I wish I’d done sooner is gotten a screen reader because I could have done my reading at 3 times the speed.”

When asked what the best part of receiving support was, the answer came as a surprise,

“The best part of getting support, for me, was discovering what I couldn’t do because I was glad to be able to do so in a safe environment. I would much rather learn these things in a place where I have control of the situation, than be thrown in the deep end. For me, independence is about control—getting to choose if, how and when something is done. I realised that I still had my independence because it came from choosing to have support in the first place.”

At the time of discussing this, Brent shared that he was living independently and had just got his home cyclone ready for Tropical Cyclone Alfred without any external supports. Being able to implement that felt huge and reaffirmed his capabilities thanks to the skills and mindset that his past supports have equipped him with.

Before Brent began working at Guide Dogs Queensland, he underwent the journey of getting a Guide Dog of his own—and at just 23 years old became the youngest person in Queensland to handle a Guide Dog.

Brent recalled it being a long journey, including two years on a waitlist. Then one day, he was in the kitchen when he got the call and the first words he heard were,

“What do you think of the name Jaycee?”

Jaycee has been Brent’s Guide Dog for six years now. The day he found out, he cried on the kitchen floor because he knew it was going to be amazing and game-changing. But the journey has come with hurdles and important considerations.

“Having a Guide Dog is a unique thing because, unlike a cane or a wheelchair, they are a living and breathing creature—but they are also a mobility tool. I have 100% control over a wheelchair but a dog is unpredictable, so it was a big step to lean on her for support. It has taken three years to build a level of comfort and trust with Jaycee and get to where we are today.”

Challenges with getting the right support

One thing Brent wishes more people understood about vision loss is that it’s a spectrum, and each individual’s experience is different (including people with the exact same condition).

When Brent’s younger sister also went on to be diagnosed with Stargardt’s Disease, the way she approached and used her supports looked completely different.

“We both have Guide Dogs, but our individual experiences have been varied, despite us sharing the exact same condition caused by the exact same genetic mutation.

I’ve been lucky that as my vision changes, Jaycee has been able to readjust and change the way she assists. But it can be a major thing, and it’s important to find support coordinators that understand this and have current knowledge around vision loss.”

Brent initially found it challenging to get his support needs met by coordinators who weren’t experienced with vision loss. He now self-manages his NDIS Plan, and after four rounds of reviewing and renewing it, has found a system that works for him.

“I’ve set up my plan to accommodate any barriers associated with my condition. So anything that has become a necessity, or is a secondary effect of it, can be covered, and anything that is considered a convenience that becomes a necessity can also be covered.”

• Navigational aids – a handheld device which vibrates and changes in strength depending how far away an object is. The device has helped him figure out if road lanes are two or four lanes long when crossing roads, to judge distances.
• A large print keyboard– Brent mentioned this small adjustment alone can do wonders.
• Tactile dots – they are easy to stick on surfaces and make it easier in the kitchen. Brent uses them on his microwave and air fryer to guide him through turning appliances on/off and setting a timer for cooking.

As for support services, Brent recommends all the previously mentioned supports and emphasised their importance.

“Psychology is an important support for anyone going through vision loss because you will experience grief, and it was all very much crisis management for me at first.

I also feel that capacity building support requires a delicate balance between your independence and your needs—some people over-focus on one and neglect the other, and both are important.”

Brent shared that two things he has utilised regularly which he finds helpful are remedial massages (to reduce inflammation caused by eye stain and stress) and support workers.

“I can do my own shopping, but I can’t drive a car—so if I’m doing a big grocery shop or buying kilos of dog food for Jaycee, it’s challenging to carry all of that home on foot. My support worker assists me with getting to and from the shops for things like that.”

At this stage of the journey, Brent’s NDIS Plan focuses less on building foundations and more on maintaining them—with small touch ups or adjustments being made each year depending on the state of his vision.

“I have a great support system around me, and I work on being in control as much as humanly possible. That sense of control is often gained through mundane activities—for example, choosing to eat the same thing over and over—but it’s a really nice feeling and contributes to my core sense of identity.”

Working at Guide Dogs

Brent’s role within the Access and Advocacy Team empowers him to help the local community, and work with clients in a similar position to him.

One of his favourite things about the role has been watching their team grow and their perspectives change.

“Everyone who works here does it because they want to help people and see positive change. But it’s been amazing to see them incorporate those changes and to know that it is making a difference.”

If you are legally blind, or experiencing vision loss, and are seeking support, here are some helpful places to start:

Vision Australia
Vision Australia has the largest range of adapted technology and tools in Australia—including the tactile dots and large print keyboard that Brent mentioned (both are NDIS consumables eligible). 

Guide Dogs WA
If you want to learn more about getting a Guide Dog (including eligibility) check out Guide Dogs WA (they have a world class breeding program now thanks to a colleague that moved over from Brisbane, according to Brent). 

Capacity Building Supports
At Helping Solutions, we offer daily living and community access via our support workers to support you in building your capacity, trying new things and increasing your independence. 

Clear Health Psychology
If you’re looking for a good psychologist, we can’t recommend Clear Health Psychology enough for their professional and trained team. They have practises in 18 convenient locations across WA.