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On the eve of Pawgust 2020, an initiative from Guide Dogs Australia that is challenging Australian dog owners to walk their dogs for thirty minutes a day for thirty days in August to raise vital funds, we thought it was important to share the powerful story of a partnership between someone with low vision and their Guide Dog.
Guide Dogs Australia kindly connected us with Ingrid Barnes who was matched with her dog Banner in 2019. She kindly accepted to answer our prodding questions, showing her amazing resilience and a great sense of humour! This is their inspiring real life story...
What was your life like before your disease progressed to blindness and how much of an impact has it had?
"Before I truly went blind my life was jam packed with work, study, travel and my hobbies. Prior to 2018, I was studying at UNSW where I completed my Bachelor of Music, majoring in performance. I started singing lessons in high school, and enjoyed performing classic works and opera arias in several languages, having also some background learning French, German and Italian.
I also performed pieces musical theatre, and later songs from Japanese artists and anime. I had the pleasure to be the soloist with the UNSW Wind Symphony’s Lord of the Rings Suite, as well as competing twice in international singing competitions - once in Japan, the other the States, for which I came best in show. My main hobby to this day is cosplay, and I still sew a majority of my costumes even if it takes a great deal of time. My specialty is large ballgowns - the bigger the better!
I’ve never been particularly athletic to be true, but I did enjoy horse riding and working with my personal trainer, whom I still see regularly. I still love boxing with her and can do some pretty complex combinations with my eyes closed!
During and after the completion of my degree I was working as a medical receptionist, and by 2018 I was full time. I had been planning post graduate studies in film, but this all changed as my vision deteriorated more rapidly. I could no longer keep up with the fast pace of the practice I worked for at St Vincent’s private, as using a computer became increasingly difficult. So I had to resign.
I’ve never been particularly athletic to be true, but I did enjoy horse riding and working with my personal trainer, whom I still see regularly. I still love boxing with her and can do some pretty complex combinations with my eyes closed!
During and after the completion of my degree I was working as a medical receptionist, and by 2018 I was full time. I had been planning post graduate studies in film, but this all changed as my vision deteriorated more rapidly. I could no longer keep up with the fast pace of the practice I worked for at St Vincent’s private, as using a computer became increasingly difficult. So I had to resign.
My world quickly became incredibly small and lonely, faced with new daily challenges. Although, I was and continue to be so lucky being surrounded by supporting and kind family and friends. Learning to be blind isn’t easy, and their patience and kindness has meant the world to me."
Could you explain to us what caused you to be blind and how you were diagnosed?
"This for me is a rather sensitive question. Although my child ophthalmologist did detect possible retinal dystrophy at a young age, further testing was not prescribed.
I simply grew up wearing very strong contacts and the most incredibly thick glasses - aware that I didn’t have good depth perception, or peripheral vision. I believed for the longest time that it was a matter of just acuity. I noticed a great decline in what I could see of my world from 2016 - which became far more rapid in 2018.
It was only after my 25th birthday that I was diagnosed with Retinitis Pigmentosa. Though in reality, I believe that I was already legally blind.
My strain of Retinitis Pigmentosa is recessive - there is no family history. It’s quite amazing that my parents should both have carried the same genetic defect - the chances are so small for that to occur. There was a one in four chance that one of their children would have the disease, and I won that genetic lottery. My older sister has perfect vision, lucky duck!
Recessive strains of Retpig (as I fondly call it) are far more aggressive than the dominant strains that can be passed easily to family members. The rate at which this disease causes eyesight to deteriorate is truly unpredictable, which is is why I didn’t see this coming I suppose!
The easiest way to explain it is it is like a shrinking tunnel - over time you have a smaller and smaller visual field. I can only see 3.5% of the average field (approximately just under 5 degrees). I am completely without any sight in low-lit environments. It is estimated that I have a maximum 20 years left with this remaining sight before I am left with just light sensitivity, a lack of depth perception, and a complete loss of sight in dark environments.
It mainly causes a gradual decline in peripheral vision, leading to a loss of sight altogether with time, perhaps with some residual light awareness remaining.
I do wish I had known that I was going to lose my sight before it was happening - simply so I could have better prepared myself for huge life changes. I have had only two years to adjust to a cane and a Guide Dog. I will be learning Braille hopefully this year! I have a great love for languages as I mentioned, and this seems like just another one to master. I’m sure it can’t be more difficult than learning Japanese kanji!"
When did you officially apply to receive a Guide Dog and what was the process?
I do wish I had known that I was going to lose my sight before it was happening - simply so I could have better prepared myself for huge life changes. I have had only two years to adjust to a cane and a Guide Dog. I will be learning Braille hopefully this year! I have a great love for languages as I mentioned, and this seems like just another one to master. I’m sure it can’t be more difficult than learning Japanese kanji!"
When did you officially apply to receive a Guide Dog and what was the process?
Being matched with a Guide Dog became something I longed for more than anything. I officially applied for one in - I think it was - November of 2018. The process itself is rather simple. I had already completed my cane course with a mobility specialist from Guide Dogs Australia.
I requested a dog with a lighter coat so even in dark environments I may be able to know where he is. The joke is on me because he blends ridiculously well into our carpet at home! I have apologised for very nearly walking into him many times.
They also went out with me and my cane and filmed me walking, to see how fast my normal pace is. I believe they also took notes of my height and weight, so as to find one of appropriate build. My input into the matching process was somewhat minimal. My personal expectations for my dog were all very much within reason.
I told the team that I would need a dog willing to have a very varied day to day lifestyle. Sometimes. I would spend time in my local area, others need to be able to travel by bus to Bondi Junction (where I would frequent Spotlight or the busy shops of Westfield) or into the CBD. I mentioned too that I travel frequently, and would most likely wish to take my Guide Dog with me on domestic flights.
To learn more about this careful matching process, visit www.guidedogs.com.au/our-dogs/the-guide-dog-team/
Do you remember Banner's arrival into your home?
"After many months of waiting, in June of 2019 I finally met my new best friend Banner! I was so excited - and felt it was meant to be since he and the rest of his litter were named after the Avengers and I am a massive MARVEL fan!
I remember the night before he arrived sitting in my room trying to imagine what having a dog snoring on the floor beside my bed the next night would be like!
I remember the night before he arrived sitting in my room trying to imagine what having a dog snoring on the floor beside my bed the next night would be like!
The day he was brought over I felt like I was holding my breath. My two friends were with me for moral support as my parents were at work and the whole thing was so incredibly surreal!
I thought I was going to cry but spent the first afternoon with him in a state of shock. He was finally here! I have always loved dogs but never owned one so large - or one that shed so much!
It was love at first meeting and he became my shadow from that moment on.
The first to greet me every morning with slobbery kisses and the last sound (of very loud snoring) I’d hear as I fall asleep.
The first few days were certainly intense! Although he now sleeps a solid eight hours, he woke me up then around 6am which was quite a shock.
The first to greet me every morning with slobbery kisses and the last sound (of very loud snoring) I’d hear as I fall asleep.
The first few days were certainly intense! Although he now sleeps a solid eight hours, he woke me up then around 6am which was quite a shock.
In the middle of winter when it’s still pitch dark, it’s a rude awakening to rush down to the corner park still in your PJs so he could relieve himself! Now luckily we have a dog loo with fake grass in our backyard, should that happen again!
Before we started training for real we simply spent time getting to know each other - which was so trying: so many snuggles and belly rubs, goodness! But in seriousness we did start with making sure his discipline training was up to scratch with various exercises.
It wasn’t until the following week that the real training began in harness and that was a very strange sensation to adjust to. With a cane you control yourself - so it’s a change to have an animal making those decisions for you. But once I became used to it I dreaded any occasion where a cane may be more appropriate."
What difference has Banner's assistance made to your day-to-day life?
"I remember the first time we went on the Bondi to Bronte cliff walk together, and feeling not just relaxed but free. It was the first time after training together that it had all clicked. It was a happiness I can’t put into words.
What difference has Banner's assistance made to your day-to-day life?
"I remember the first time we went on the Bondi to Bronte cliff walk together, and feeling not just relaxed but free. It was the first time after training together that it had all clicked. It was a happiness I can’t put into words.
Banner and I are partners in crime for the long haul. I know that even though the road won’t be completely smooth, it’s certainly going to be a wonderful ride. These dogs aren’t robots - they don’t come flawless and programmed to always do the right thing.
Sometimes Banner is cheeky and I think he’s going through a bit of an adolescence phase at the moment! But he’s certainly a good boy when it comes to his work and seems to truly enjoy going out and trying his best.
With him by my side my world feels so much larger, and my confidence to walk out in busy places has been restored. No longer do I slowly plod along with my cane, but find I can walk briskly and happily weaving through crowds and around obstacles. I’m not alone anymore, and I have a guide I can trust to keep me from harm. We been on some wonderful adventures!
From trips to the CBD, walks around centennial park, to restaurants and shops, to vineyards in the Hunter Valley, and playtime at the beach. He’s been on six flights with me now, on holidays to Noosa, the Sunshine Coast and Melbourne. He’s with me 24/7 so it’s lovely that I don’t have to leave him at home.
Banner has even attended one of my pop culture conventions with me, Supanova at the Gold Coast earlier this year! I was so proud of his incredible work in a new busy place, and he was so patient through my photoshoots and even came up with me on stage! He’s even attended the press launch of Mardis Gras with me which was tremendous fun!
Everyone has been affected by COVID-19 and our lives have changed quite drastically too. It’s been difficult for both of us to lose the new found freedom that we had - it’s been months since he’s been able to work me on and off a bus since I’ve been less inclined to go to busy places. I look forward to when it is safe for us to take part in more of our old activities."
To learn more about the high level of training guide dog puppies receive, visit www.guidedogs.com.au/our-dogs/guide-dog-training/
How important is Banner in your life now?
To learn more about the high level of training guide dog puppies receive, visit www.guidedogs.com.au/our-dogs/guide-dog-training/
How important is Banner in your life now?
"Nothing can prepare you for your first Guide Dog and training with them is no easy task. But the work, love and days you invest into building such a partnership is worth every second. For in the end, you have a truly special companion who is with you every second of every day.
Banner seemed almost too well behaved when he came to live with my parents and I. Although, shortly after settling in he showed his true colours. A cheeky, playful puppy who adores soft toys, being brushed and chasing balls up and down the halls. He quickly became much loved by my family, and is adored by my friends who like to consider themselves ‘part of his pack’.
It’s actually only been one year! Which is crazy to think because I couldn’t imagine life without him - we are quite inseparable. I have had to go out once or twice without him - say to a concert or the opera (although he did come with us to see Elton John at the Hunter Valley which he enjoyed immensely) - he absolutely loses his mind when I get home!
It’s actually only been one year! Which is crazy to think because I couldn’t imagine life without him - we are quite inseparable. I have had to go out once or twice without him - say to a concert or the opera (although he did come with us to see Elton John at the Hunter Valley which he enjoyed immensely) - he absolutely loses his mind when I get home!
I usually sit down and just resigned to my fate of being licked like crazy for the next ten minutes. Even on days at the moment when I can’t really go out, and my family is at work -
I’m never alone. Not anymore!"
In a year where life may feel a little more challenging for many of us, please help to support people living with vision loss and blindness as this is their "new normal".
It costs more than $50,000 to breed, raise and train a Guide Dog or Assistance Dog.
Register for Pawgust 2020 at www.pawgust.com.au/pawsitive
We'd like to extend our sincere thanks to Ingrid Barnes for allowing us much more than a passing glimpse of what it really means to live with a disability and decide to make the most of your life!
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