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Tuesday / June 25.
HomemistoryINGRID’S STORY: Navigating Retinitis Pigmentosa

INGRID’S STORY: Navigating Retinitis Pigmentosa

Ingrid Barnes was six months off turning 25 when she experienced a rapid decline in her visual acuity. She was diagnosed with non-inherited retinitis pigmentosa soon after. It turned out that she’d been losing vision for most of her life. In fact, at the time of diagnosis, she’d already been legally blind for 10 years; she just didn’t know what she couldn’t see.

Now 30 and working with Guide Dogs, Ms Barnes reflects on her experiences as she learnt to live with blindness. She also provides some valuable insights that we can all learn from so that she, and other people with disability, can more comfortably participate in everyday life in the broader community.

More than one million Australians are expected to live with blindness or low vision by 2030,1 with Indigenous Australians three times more likely to be affected. While more than 60% of people with low vision or blindness are over the age of 65, three in 10 are aged 19–64 and one in 10 are under the age of 18.2

According to a study initiated by Guide Dogs in 2023,3 along with navigating a world without sight, one of the most significant challenges that people with blindness face is being accepted by peers, colleagues, employers, and service providers. This can be particularly challenging for adolescents in the throes of self-discovery.

And it isn’t helped by the fact that “despite their positive intentions”, a surprising number of young Australians have no idea how people with blindness and low vision date, socialise in groups, work, travel, and parent. According to the Guide Dogs’ survey, “they don’t even have the confidence to engage with people with blindness and low vision” and, because of this lack of understanding, the majority of young people fear vision loss.

All of this can inadvertently lead to increasing isolation for the blind and low vision community.

I AM NOT A SNOB!

For Ms Barnes, this was precisely her experience. Prior to her diagnosis, she was living her best life as a student at the Sydney Conservatorium of Music. Having worn +8D and +9D contact lenses from the age of four, most of her peers were unaware that she even needed vision correction. And having been told there was nothing that could be done to improve her vision, she had become used to carefully navigating the world around her.

With increasing tunnel vision, Ms Barnes said it was a struggle to recognise faces, which made it hard to make friends at university.

When walking down the corridors to use the rehearsal spaces, “I was trying to avoid people sitting on the floor or in front of me. I didn’t see people waving at me. People didn’t know they needed to actually say, ‘Oh, hi Ingrid’, because of course, why would they?

“And so, I got a reputation for being a snob, even though I wasn’t. I just didn’t see people. I didn’t interact the same. I was missing all those social cues, which is a very common barrier.”

On top of that, managing basic daily activities meant that she was exhausted by the time she got to her classroom. “Stepping off a bus and getting onto the curb was increasingly difficult, I would trip and fall all the time, permanently having bruises everywhere, that sort of thing”.

“I was finishing off my degree and it was traumatic because I was struggling to read sheet music and not understanding why it was so difficult. I had a teacher who was very tough; if I sang one thing wrong, she’d accuse me of not rehearsing enough and stop me from singing for the rest of the lesson.”

A SOCIAL AWAKENING

Once she was diagnosed with retinitis pigmentosa, Ingrid’s world shifted in other unexpected ways.

“I was telling friends I’ve had since high school that I’d gone blind and some people were fine; they were very supportive and treated me just the same. But others didn’t know how to talk to me anymore, which was really interesting… for whatever reason, they couldn’t handle it, and so they backed off completely.

“That was quite difficult, and isolating because suddenly you don’t want to go out as much anymore and you don’t feel like you can. It’s not an accessible world fundamentally, so you don’t feel like you can enter the same spaces as confidently as you used to.”

Initially, she said this was confronting, however with time, she learnt to deal with it. “It’s awful. You’re like, why aren’t people inviting me out anymore? Because it’s too much of a hassle in their eyes to invite me out to go to a dinner or a party or whatever the case may be.”

But it wasn’t only the people she knew who found it difficult to engage.

“People struggle to talk to you as an individual without bringing up your disability and asking questions: ‘can I ask what’s wrong with you?’ or ‘what’s your problem?’ or ‘how are you able to do X, Y, and Z?’. It’s kind of irritating because you just want to exist in the same space as them… And it’s also really personal. It’s interesting navigating those dynamics. Some days I will be like, ‘Oh, I can answer that’, but sometimes I just don’t want to.”

On those days she said, it can be tempting to be rude, “but of course you just don’t because it is a topic that people are still learning a lot about”.

LIMITATIONS AND POSSIBILITIES

Coming to terms with vision loss was one thing, however coming to terms with the need to use aids was another psychological hurdle that Ms Barnes found particularly challenging.

“One of the problems for people with retinitis pigmentosa is that we are very high functioning for a very long time before we realise that our vision has deteriorated to the point where we’re putting ourselves at risk,” Ms Barnes explained to mivision. “And then we become very resistant to help and assistance. We insist that we can manage, which really isn’t practical at all. It goes against what’s good for our personal health and safety. And it severely impacts our social interactions.”

Additionally, she said, “when you start using a mobility aid, you are making what many people would see as an invisible illness visible to not only the general public, but also to your colleagues, your friends, your peers, your workmates.

“It is a matter of pride and shame. There’s so much stigma around becoming disabled and joining the disabled community; around immediately being labelled and then treated differently.

“It does shift interactions a lot, which is really quite hard.”

Yet in retrospect, she admits that edging her way into mobility support with a subtle ID cane was an important step towards getting on with her life and navigating her way around the campus.

Once on the path, she soon progressed to the regular long white cane used by 90% of Guide Dogs clients, but then, being “a dog person” and realising that she would be dealing with blindness for the rest of her life, she expressed her strong interest in a guide dog.

“I wanted the companionship, and I wanted that extra independence and mobility that a cane does not offer you,” she explained.

When Ms Barnes turned 26 in 2019, Banner became part of her life and has been her loyal companion ever since, accompanying her almost everywhere, and “completely changing everything”.

“It’s so much better than just stepping outside with a stick and just giving it your best shot… With a stick, you’re doing all the mental thinking yourself… Whereas a dog carries the mental load for you to a degree. It’s very much a partnership because he’s doing the thinking to avoid people and weave through crowds and to find what I’ve asked him to find; I can relax a lot more. So going about in the public sphere becomes a much easier experience… Also, he’s just a brilliant buddy, which is really lovely.”

HELPING OTHERS

Now in a client facing role as a Connection Specialist with Guide Dogs, Ms Barnes works with a team of blind colleagues to organise and facilitate events for clients, and to provide peer support.

“When it comes to chatting to clients, it’s really wonderful because we can say, ‘we understand where you’re coming from, and we can help find you the right activity that you’ll feel comfortable doing with your vision loss experience’. ”

Her role also provides ample opportunity to explore and experiment with technologies that will become increasingly important to maintaining her own independence with time (while Ms Barnes currently has about 2.5 cm of central vision, by the age of 40, she anticipates living with light and shadow perception, something she “came to terms with a long time ago”.

“We have some wonderful assistive tech specialists at Guide Dogs who are brilliant, and we run workshops for different things. So recently I was helping to facilitate, but also participate in one of our iPhone voiceover workshops.”

She is also learning to read Braille (including musical scores), to use Jaws (a voiceover app to help navigate computers), and Alexa, “which is wonderful for a range of activities”.

As a “massive reader”, however, Ms Barnes said switching from books to audiobooks was the biggest leap forward.

“My whole life, I would take 20 books away on a summer holiday just to pass the time, and I’d get through them all really quickly, so losing my vision and realising that I just couldn’t read anymore because of the level of eye strain, was really jarring for me… I just love audiobooks and I love listening to them at 1.6 speed and really getting through them. That’s been the biggest thing for me.”

WHAT COULD BE BETTER?

Ms Barnes is fortunate to have a supportive family and a few close friends who have “stuck by” her as she has adapted to blindness. Perhaps most helpful though, is her strong personality, and the courage to calmly self-advocate when, for instance she is questioned about having Banner with her on public transport or in a restaurant (it is against the Discrimination Act, to refuse entry to a guide dog).

Reflecting on the stress that comes with attending medical appointments, “even for people who have dealt with their disability emotionally”, she said service providers can do better.

“There’s a lot of waiting around and stressing out, so it’s nice to be treated with kindness and respect. It’s nice to think a health professional is going to address me rather than my support worker (or family member or friend), and they’re going to look directly at me when they ask questions, rather than staring at the computer, which happens sometimes.”

She also suggests that providers should be more confident when talking to people about their blindness and the services available to help.

“It’s funny how often people think the word ‘blind’ is a bad word to use. I’m like, ‘I know what’s wrong with me. It’s fine. You can say it; it’s all good’.

“Rather than calling a blind patient through to the consult room and leaving them to navigate the space, it would be great if they would say, ‘Oh, hi Ingrid. I’m ready to do your test now. Would you like some assistance getting to the room?’. Or ‘Can I offer you a guide?’. It’s about being aware of the person’s level of disability and then making the consult as comfortable and stress-free as possible,” she explained.

To help patients, particularly those who are in the early stages of their journey, she said, “You don’t have to be their emotional support, so long as you avail yourself of what’s out there, and you’re able to encourage them to reach out for support from specialists like Guide Dogs orientation mobility specialists.

“When you go through vision loss, you suddenly think, ‘my life is out of control’. So, it’s about making sure the patient feels empowered to ask for help yet still knows that they have autonomy in their decision making… You can’t push people towards things, but you can gently nudge them and be like, ‘look, this would be a really good thing for you, if you are interested’. That sort of thing.”

References

  1. Vision 2020 Australia, 2022–23 Pre-Budget Submission (January 2022), available at: treasury.gov.au/sites/default/files/2022-03/258735_vision_2020_australia.pdf [accessed 14 March 2024].
  2. Ah Tong, B., Duff, G., Mullen, G., and O’Neill, M., August 2015, A Snapshot of Blindness and Low Vision Services in Australia, Vision 2020 Australia, National Disability Services, Australian Blindness Forum, Sydney.
  3. The research, conducted in August 2023 by The Owl Insights on behalf of Guide Dogs NSW/ACT, examined the common biases and barriers facing people with low vision or blindness. An online survey was administered to a nationally representative sample of 400 Australian residents aged 18–35 who do not identify as being blind or having low vision. All findings from The Owl Insights can be generalised to Australians aged 18–35.