A vision loss adventure
Julie describes how life became an adventure after she went blind.
July 4th, 2023
When Julie Woods became blind she decided it wasn't going to hold her back. She decided to say, “why not?” to whatever life threw at her.
Her resolution came to her about two years after becoming totally blind, when she was offered the chance to go cross-country skiing with a group of blind people.
“I politely declined, and I went home and I sat on the safety of my couch that night, and I thought, you stupid woman, what kind of blind person are you going to make if you turn down opportunities that come your way?
“So, I decided at that moment rather than say no, I would say why not? And I’ve said why not to walking 10 half marathons, visiting the seven wonders of the world, learning to read with my fingers, going up in a hot air balloon, going down the Shotover River in the jet [boat], doing all those things that I thought that I couldn’t.
“I’d like other people to understand that ‘no’ is the biggest barrier to you living the life that you want to live.”
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Julie: Hi, I'm That Blind Woman, Julie Woods, from Dunedin. I suppose the most pivotal lesson I have learnt is, learning to say why not to opportunities that come my way. When I had been blind for a couple of years, I was out at the Blind Foundation and the recreation advisor came up to me… and she said to me, Julie we're taking a group of blind people away cross-country skiing. Would you like to come? And I thought cross country skiing? Sounds really dangerous. Might fall over, something might happen to me. And I politely declined. And I went home and I sat on the safety of my couch… that night. And I thought, you stupid woman. What kind of blind person are you going to make if you turn down opportunities that come your way?
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Julie’s eye sight started deteriorating at age 18. By age 42, a single mum raising two boys, she was totally blind.
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Julie: So I decided at that moment rather than to say no, I would say why not? And I've said why not to… walking 10 half marathons, um, visiting the seven wonders of the world, learning to read with my fingers, going up in a hot air balloon, going down the shotover river in the jet… doing all those things that I thought that I couldn't, so I think I'd like other people to understand that, 'no', is the biggest barrier to you living the life that you want to live.
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Since becoming blind, Julie has travelled to 50 countries, and has been to all seven wonders of the world.
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Julie: People would say to me, how can you sightsee when you can't see? And I would say, because I can smell, hear, taste and touch, and every day I'm away I write a blindfulness diary, one thing that I smell, hear, taste and touch.
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Julie: Pocket on the outside…Would you like some toast?
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Julie: People assume that I can't cook, that I can't choose my clothes, that I can't put on my makeup, that I can't operate a computer, that I can't operate a cell phone. So many things.
Julie: So cooking without looking is all about what you smell, hear, taste and touch, so… I can't see the bread and where it is in the freezer so I have to have a system that says it's always down the bottom and on the left hand side and then I can go to it straight away and feel it with my fingers, so I can feel the toaster cooking. I can smell the toast cooking. I can find the margarine in the fridge 'cause it's always put back in the same place so things have to be returned to the same place and… I use those other senses to identify what I'm… finding, using.
Julie: Right, so the washing is on the rooftop [lift door opening].
Julie: I think what the world needs to do with blind people is to raise their expectations… because what I find is that people have very low expectations of what a blind person can and can't do, so to raise the bar in your own thinking about what a blind person can do, rather than focusing on what they can't do, and that involves creating accessible… an accessible world where I'm not being sent print letters by government departments, or… that I have tactile warning indicators and audible signals at traffic lights, all those things that not only help me as a blind person but actually help the greater world as well.
Julie: So going blind has made me realise that the biggest thing about being a human being is connection. And, I don't know if you can see on my t-shirt I've got one million names in braille. [Music starts playing softly] That is a dream of mine to write the names of one million people in braille.
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Julie: I have written 7,448 names in braille. I've sent names to 24 countries around the world. I have written the name of New Zealand's oldest person, Madeline, who was 110 years old. I have written the names of triplets in China, who were my youngest babies when they were born, and I've written the name of Neve, Jacinda Ardern's baby, so our Prime Minister's baby. And I actually got a letter back from Jacinda Ardern in braille that she had signed, so by writing these names in braille, I'm deepening the connections that I have with people, ah not only here in New Zealand but also overseas and around the world.
Julie: So how long are you in Dunedin for, George?
George: ah… another, two hours
Julie: oh wow are you on the boat?
George: yup
Julie: cool
Julie: So there's your name - G-E-O-R-G-E. George. So you're now added to my total.
George: [Laughs] Thank you
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The biggest thing you can bring to change is an open mind… and that comes back to the 'why not' message, so… being open-minded to learning new things, stretching yourself and, to doing things in different ways, then it's amazing the kind of life that you can live.
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Journey into blindness
Julie was born totally sighted in 1966, but her vision was fading by the time she was 18 when she was diagnosed with Stargardt disease. It’s a condition that effects the macular, the central vision.
“I began my first year at the University of Otago in the back row of the lecture theatre and ended up in the front row by the end of that year. I had trouble reading print and reading fine print, reading signs on the road, and recognising people at a distance, so that was my first dip into partial sight.”
Julie’s sight got progressively worse and she was declared legally blind at age 31. She says her sight got suddenly worse in the months leading up to that diagnosis.
“I noticed the vinyl in our bathroom was shimmering, and then that shimmer went to a blob, and to a haze and it spread to my right eye, so within three months I lost most of my remaining vision and all I could see was high contrasting shapes and moving shadows.
“I was married with my two boys, Zachary aged three and Sebastian aged one, and that’s when life really began to change. I had to learn to do things in different ways.”
Learning to do things differently
Because she could no longer rely on her sight to do things, she had to learn how to manage with her other senses.
Instructors from the Blind Foundation came to her home to teach her how to do everyday tasks in new ways.
“[They taught me] how to pour a cup of tea, and butter a piece of bread, how to answer the telephone, how to use a white cane, and to do all those daily living tasks that I had previously done as a sighted and partially sighted person.”
About a decade after becoming legally blind, Julie lost all her remaining vision in 2008.
“I was out walking one day... and I began to cross the road there and I couldn’t see the other side, which with my legal blindness I could follow the contrast in the footpaths and any markings on the road, and I remember someone offering to help me and I had trouble getting back to work and just almost instantly there was this dip in sight that left me totally blind.”
Finding belonging
Julie wrote a seven-word story about blindness. It went: Sighted, partially sighted, blind. Happy, sad, happy.
“And what I mean by that was, when I was partially sighted I had no support.
“When I had a second opinion from an ophthalmologist, my mother asked the ophthalmologist, what support services are available for Julie? And he turned to her and said, what do you want support services for?
“So that of course threw me into a no man’s land. I didn’t belong in the sighted world, and I didn’t belong in the blind world. I belonged nowhere.
“Ironically, it wasn’t until I went blind that it moved me towards a group of people who are now like me, so I met blind people who were reading with their fingers and reading with their ears. I met a blind woman who used a chainsaw. I met a blind man who mowed his lawn with one shoe on and one shoe off.
“I was meeting other blind people who were doing the things I thought I couldn’t, and for me I found that very liberating, so I was now free to be who I wanted to be, and I had the support to be who I wanted to be, and that has really made me really happy.”
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Julie: Often children ask me, what can I see? Is it all black? And I say no it's all white. So it's like looking through a foggy bathroom mirror… with the lights out… So it's sort of white in the back and black behind it's quite hard to describe.
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Julie Woods is an inspirational speaker and life coach from Dunedin.
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Julie: I went into a hardware shop one day… with my father and the man behind the counter turned to his wife and said, here's that blind girl I was talking… to you about, and I thought hmm, I'm not sure if I like that, and I came away from that thinking oh well that's what people are going to call me and it kept hap’ting… happening more and more often so I decided to brand myself as That Blind Woman. Rather than be annoyed by it I thought I'd embrace it.
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Julie: So I guess if we start at the very beginning I was born totally sighted in 1966. And then when I was 18 years of age I developed a condition called Stargardts disease, which is… a condition that affects the macula, the central vision. I had trouble reading print and, reading fine print, reading signs on the road, and recognising people at a distance, so that was my… first… ah, dip into partial sight, and then that really remained fairly stable until… 1997 at the age of 31 I became legally blind due to a condition-ah called inflammation of the retina, which affected the back of my eye, and I was married, ah-with my two boys, Zachary aged three and Sebastian aged one. And that's when life really began to change.
Julie: I noticed the vinyl in our bathroom was shimmering, and that shimmer went to a blob, and to a haze, and it spread to my right eye so within three months I lost most of my remaining vision and all I could see was high contrasting shapes and moving shadows. [Music starts playing at background level] And since then in 2008 I lost my remaining vision and I'm now totally blind.
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I was out walking one day, actually I stopped at the lights at the Captain Cook Tavern and I began to cross the road there, and I couldn't see the other side, um, which with my legal blindness I could follow the contrast in the footpaths and any markings on the road, and I… just… couldn't... and I remember someone offering to help me and I had trouble getting back to work, and just almost instantly there was… this dip in sight that left me totally blind.
[Music volume rises]
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Julie: I've found blindness to be life changing. [Music fades out] In fact I wrote a seven-word story about my vision loss adventure. Sighted, partially sighted, blind. Happy, sad, happy… And what I mean by that was when I was partially sighted I had no support. When I had a second opinion from an ophthalmologist, my mother asked the ophthalmologist, what support services are available for Julie? And he turned to her and said, what do you want support services for? So that of course threw me into a no man’s land. I didn't belong in the sighted world, and I didn't belong in the blind world. I belonged nowhere. So, ironically it wasn't until I went blind that it moved me towards a group of people who are now like me. So I met blind people who were reading with their fingers, and reading with their ears. I met a blind woman who used a chainsaw. I met a blind man who mowed his lawn with one shoe on, and one shoe off. So I was meeting other blind people who were doing the things that I thought I couldn't, and for me I found that very liberating. So I was now free to be who I wanted to be, and I had the support to be who I wanted to be, and that has really made me really happy.
[Music playing]
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Julie: The boys were three and one when I went blind. So for them, they just thought that mums were blind and dads could see, and it wasn't until my oldest son Zachary went to school and he said to me, mum, why is it that other mums can see? And I said well, other mums can see, Zach, it's just your mum that's blind. And that kind of struck me that the way they saw their childhood was normal to them. And I always… wished and dreamed that they would grow up as human beings that would be more aware of other people's needs than just their own, and apart from their teenage years, ha-they're now 25 and 23, I would like to say that that is how they have ended up.
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Julie: You know, to be able to see the world through someone else's lens is, is something that… we as people with disabilities can give to the greater world. So I mean I see that as our greatest asset, but of course we have to get people who don't have disabilities to see that as a great thing as well. But I'm ah-I’m ah, an optimist and I hope that the world will… is beginning to see the world in different ways and that diversity is becoming a new way of being, and not just through disability but through race, through sexuality, through religion, through all the different, um, ways that we can exist in the world, so I'm hopeful that the world will be a better place for people with disabilities, in the future.
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The one million names in braille project
After hearing an interview with a man who was painting one million pictures to raise awareness of mental illness, Julie wondered what she could do.
“And I thought, oh, maybe I could write a million names in braille!”
The concept of writing people’s names in braille started when Julie began traveling around the world with her husband, Ron, in 2009.
Using a stylus and slate, she would write the names of their tour guides on her business card and gift it to them.
Often, they were very grateful to receive it and Julie felt moved by the connections she was building with people.
“So when I turned 20 years blind, I decided to set myself a goal of writing one million names in braille, because I thought, imagine if I could do that a million times, how cool would that be?”
She has now written the names of more than 7500 people in braille, including Neve, the daughter of Prime Minister Jacinda Ardern.
Julie sent Neve’s braille name to the Prime Minister, and Ms Ardern responded with a thank you letter written in braille.
Using blindness for good
When she became blind Julie decided she was going to use it for good.
“The first thing I did was to begin to tell my story. I began to go and speak at the Blind Foundation to donors and community groups and then just widened the net to more community groups, Rotary, Probus.
“[Eventually] l I moved into the space of speaking professionally and travelling around the country and speaking at conferences so, telling my story is one way that I’ve found has helped me interpret my life but also to inspire other people to live beyond their own limits.”
Overcoming assumptions
Julie says one of the challenges of blindness is managing people’s expectations.
“People can’t imagine what it’s like without sight, so their reaction to me without sight has been something that I’ve had to manage, and try and make them feel better about my blindness.
“Often people say, “I’m so sorry”, and it’s like, it’s ok, I’m fine, I’m happy.”
A lot of people also make assumptions about what she can and can’t do.
“People assume that I can’t cook, that I can’t choose my clothes, that I can’t put on my makeup, that I can’t operate a computer, that I can’t operate a cell phone.
“People do make a lot of assumptions, and mainly it’s around the things that we can’t do, it’s not around the things that we can do.”
Julie says challenging those expectations is something society needs to do as a whole.
“People have very low expectations of what a blind person can and can’t do, so to raise the bar in your own thinking about what a blind person can do, rather than focusing on what they can’t do.
“And that involves creating accessible world where I’m not being sent print letters by government departments, or that I have tactile warning indicators and audible signals at traffic lights, all those things that not only help me as a blind person but actually help the greater world as well.”
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