Category: Sienna

  • When some of my acquaintances lose a pair of sunglasses, I hear the phrase, “I will just buy another cheap pair…”. I wish it was that easy and didn’t involve navigating a stereotype.

    Over a week ago, I misplaced (likely on the bus) my sunglasses. I did the usual things like phone the bus company and searched my home and office but came up empty-handed each time.

    Many reading this probably assume I could buy another pair of the same. I wish that was the case and will go on to explain.

    As my vision has decreased, using what I have remaining is extremely important from a safety and quality of life perspective. I have multiple eye conditions, each causing sensitivity to light and glare. Interestingly each condition requires a slightly different tint to provide optimal viewing and finding that perfect fitting and tinted pair of sunglasses is challenging.

    My last pair were, in fact, the best I had found. These were the Julbo Explorer 2 High Mountain with dark brown (category 4) spectrum tint. A person recommended this particular model who has low vision and lives in the US. She explained this model decreased glare and the side shields blocked light from getting around the sunglasses.

    Although not the most becoming feature, the side shields worked very well. I have had multiple surgeries on my eye, which have altered the shape. I had an emergency iridotomy around 2009 that lets light into my eye through iridotomy, distorting what I see and putting q band of glare into my field of view. While this can not be repaired and occlusive contact lenses to stop this, our unsuccessful sunglasses with side shields made the difference between being able to function outdoors and not being able to.

    Julbo Explorer 2.0 with spectron high mountain lens
    Photo of the Julbo Explorer 2 with spectrum high mountain category 4 dark brown lens. Photo – https://www.moosejaw.com/product/julbo-explorer-2-0-sunglasses_10352650

    These sunglasses are designed for mountaineering and another particularly useful feature was the built-in venting to stop them streaming up.

    There are few places that stock this particular model of sunglasses in New Zealand and those that are out of stock at the time of writing this post.

    Did I mention the price – between $270 and $349 and sunglasses of a similar calibre and quality (but so not meet my needs) are around the same price or more.

    The part that bothers me about this stereotype is the helplessness people often associate with it, which feeds the negative or deficit construct of disability. I am an independent, strong and articulate person who would ask for help if required. However, for the most part, I adapt and problem solve to function without assistance (other than Guide Dog Sienna, that is) to navigate everyday life.

    In society, there is a stereotype of a blind person as needing assistance (helpless, potentially a burden on society etc.), totally blind, and wearing dark sunglasses with either a cane or a guide dog. I spend much of my life educating people to help them realise that most of the blind community does not match this. In that, blindness is a spectrum and is highly individual. Not everyone needs a cane, guide dog or sunglasses. As an example, I can function without these things. However, wearing sunglasses reduces pain and glare while using a cane or guide dog, keeps me safe and all reduces the visual fatigue from navigating and adapting to an environment that is designed for those with sight.

    I was surprised that the thought processes associated with a stereotype of a blind person held by some of our society have crept into my journey to buy new sunglasses. With this in mind, I would like to share my perception of my disability as a contrast.

    My disabilities do not define me; they are something I navigate to contribute successfully to society. Yes, navigating an environment built for those with good vision is difficult, fatiguing and frustrating at times, and often tasks that rely on vision take me longer to complete, but it doesn’t stop me from participating or contributing.

    However, living with a disability has also given me opportunities, such as an understanding and lived experience. Coupled with skills such as being a health care professional, educator, researcher and computer scientist allows me to provide multiple contexts while advocating for myself and others to improve our environment and societal perceptions of disability.

    Back to the sunglasses, if I could afford and somehow import the same model I had, I would. However, my investigations found this to be challenging in an adequate timeframe. As I am finding glare challenging without my sunglasses, I have spent most of the day in many suburbs across Auckland trying on different makes and models of sunglasses to find a pair that meets my needs.

    Form and function are hard to match. The best lenses I could find were in a sport/cycling pair of sunglasses by Oakley, the Jawbreaker model, which would not have been suitable to wear to the office or formal functions. The more formal or traditional sunglasses did not provide the coverage required. The best model so far is the Oakley Clifton Deep Water sailing as they have removable side shields and excellent lenses – the downside is the cost of $379.

    Oakley Cliften Sunglasses picture from website listed in caption.
    Oakley Clifden Translucent Blue (Deep Water lens) – Photo – https://image4.cdnsbg.com/1/441/479693_1599508998135.jpg?width=320&height=160

    So the search for sunglasses continues and I am looking forward to finding the perfect pair.

    A blog post would not be complete without a photo of Guide Dog Sienna, so below is a picture of her trying to lay in a tiny piece of the sun coming through a coffee shop window while we took a break from sunglasses shopping.

    Guide Dog Sienna in her harness laying in the sun.
    Sienna is enjoying the sun in a cafe today.
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  • I hope others learn from the stories and reflections I share on this page. With this in mind, I would like to share a story from last week to illustrate how societal assumptions affect individuals and influence others.

    This started with a bus journey. On the way home from work, Guide Dog Sienna and I were going to get a bus as we needed to get home quickly.

    We waited at the shelter. At this stop, three routes are scheduled close together at certain times of the day (2 minutes apart). The sun was shining, so I shaded my eyes to give me the best chance to see the bus approach. Because of the traffic, it was hard to hear the difference between vehicles. As a bus came, I signalled to the driver to stop.

    The bus pulled past the bus stop; Sienna and I walked to the door and stepped in and asked the driver, “is this bus the XXX bus?”. I waited for an answer and he sat, not acknowledging me, staring forward. He didn’t answer or even acknowledge me. I took a step closer and said, “excuse me, is this the XXX bus?” He gestured upward and said, “You saw it”, to which I answered, “actually, I didn’t; I can see the bus shape but couldn’t see the number”.

    Sienna sitting in under my seat in the bus.

    His response was to look at my guide dog, raise his hands and shrug, repeating, “you saw it”. I didn’t know how to respond on a bus with other passengers on it, so I swiped my bus pass and asked Sienna to find a seat.

    This interaction has made me reflect on public expectations of those with low or no vision. The reactions I mostly encounter are the expectation I can either see nothing or everything (and I am training the Guide Dog I work with). If appropriate, I will try and explain. Still, the part that seems complicated for others to fathom is the spectrum and variability of what I can and can not see, depending on many other factors.

    This is the first time a person has thought I had been faking vision loss. In hindsight, I would have loved to ask the driver why he thought I could read the sign yet still asked him. I suspect the answer will be because I knew when to flag down a bus, which was a rather large blob compared to all the cars. I believe this type of assumption reinforces some of society’s deficit view of disability.

    On reflection, I may have contributed to this earlier in my life, hiding my vision loss, for example, by not using a white cane when I probably should not have been viewed as different. I started to use my cane full time when I injured myself tripping over things, yet in hindsight, not having the stigma attached to it and starting use earlier would have been much safer. I was going out of my way to look sighted to fit into society as society expected.

    Now, as someone reasonably well established and sure of my place and disability, I look back to early in my vision loss journey, when I felt like a fraud in both the blind and sighted community. I was pretending to be more sighted than I was to fit in but didn’t feel I was “blind enough” to be considered part of that community either.

    This illustrates not only society’s common perception of Blindness (often a have or have not sense) but also the views of the blind community where there is a delimitation between low vision and total blindness and multiple definitions around the world.

    Here is an example. I searched for the World Health Organisation definition ( https://www.who.int/news-room/fact-sheets/detail/blindness-and-visual-impairment) of the blind when writing this post. The definition that they had on their website only referred to visual acuity and not the field of view, thus only acknowledging a subset of those who are considered blind in many countries. The below excerpts (photos) show Australasian definitions.

    Legal Blindness (Google Search):

    First definition in Google with Blindness and NZ

    Blindness (NZ Government Departments):

    From the Cost of Vision Loss in NZ Report in 2009.

    Back to our assumptions. It is common to have assumptions or notice similarities or differences and we learn from these. However, as the above example and definitions show, there are varying perceptions of blindness from legislation to individuals. As a result, I question, Is it realistic to expect an individual who has not been in a situation before to know and understand without using assumptions?

    I would argue having assumptions is normal. One of the key messages I give my students regularly is that we learn from assumptions it is our recognition of these as assumptions and what we do with these that is the important part.

  • If I utter the words denial of service, half of those in my life will think my computer was hacked and the other half would link this with accessibility. These two varied meanings illustrate the differences in perception across our society and show the value of knowledge and education.

    This post covers multiple interrelated concepts, so first, I will give a little background information about myself for context. All my life, I’ve been an incredibly outgoing person who would give anything a go, from waterskiing to scuba-diving to rock climbing, skiing and many other non-team sports—going out with friends, travelling internationally and working on very demanding jobs. This was with around half of the vision that sighted people have.

    I also revelled in proving the career advice at high school very wrong. I was advised to find a job as a secretary and that being a nurse and attending university was not attainable, mainly as my eyesight made me read extremely slowly.

    In response, I went to live in another country, returning and entering university as an adult and later becoming a nurse and gaining a PhD in an Engineering, Computing and Mathematics School. I tell the story to give you an example of my tenacity to point out when I raise challenges, difficulty, defeat, fatigue or other associated things this isn’t said lightly.

    There have been ups and downs with my vision over the years, one of which was having my retina reattached on my 21 st birthday for the third time. Throughout, I have managed to continue in jobs that I love, progress in my career, meet interesting people and live a fantastic life. I Achieved this by working Hard not to let people notice that I had In issues with my vision, and when it became a problem, work harder to make it less visible (in hindsight, perhaps not the best approach, but it was what society accepted at the time).

    There was a point in time I had to change in 2019. I lost half of my remaining vision, leaving a quarter of the field of someone with an average field. Recently I have learned that we have about 5 degrees left (of 155-180 degrees) and we have exhausted all treatments available. In a nutshell, there is no more medicine and science can do to stop or slow deterioration.

    Guide Dog Sienna arrived when we began the first three tests to confirm progression and that treatment wasn’t working. While this was amidst our training together and the news and training were incredibly fatiguing, the companionship, joy, freedom and responsibility this bought was unbelievable.

    Guide a dog Sienna and I was having lunch in a friend’s office last week to celebrate his birthday. This photo shows the companionship we have when Sienna is out of the harness.

    To give you an idea, I had not gone out for entertainment or leisure alone (without a friend) for about five years. I hadn’t realised that my world had become so small and that I was saying no to more outings with friends because they were challenging visually. With Guide Dog Sienna since May, I have been to a play, a movie, a tour of my favourite craft shop in Mt Wellington and many other places I would have usually avoided. Last week, one of my colleagues said you are so outgoing and do so much now, although they didn’t know me 5-10 years ago as a comparison.

    On today’s adventure, I wanted to go to a different shopping centre to pick up something my local didn’t have. To achieve this, we went to a different bus stop on a different route. When we arrived, we checked to see how far away the bus we needed was only to find it cancelled and the next 45 minutes away. I had also booked an appointment, so 45 minutes plus a 30-minute bus ride for what would take 10 minutes in a car wasn’t going to get me there on time.

    I looked on the taxi app and found a 30-minute estimated weight which was also cutting it fine. So switched to Uber. The closest Uber was 4 minutes away. The cost wasn’t too bad, so I booked.

    I messaged the driver to say I was travelling with my guide dog and could they push the passenger seat in so she could sit in the footwell. I also ask them to yell out when they arrive as I can not read the number plate. This message has served me well with no issues in the past.

    I got a reply from the driver about two minutes later asking me to cancel and rebook my ride. I answered no; if I cancelled, I would be charged and he would be paid. I suggested he cancel instead.

    He didn’t cancel and I could see the car in the app getting closer as it used GPS. I got a message from Uber saying your driver is arriving. A vehicle with the right colour and shape pulled up about 5m away with no movement or opening of the window or verbal communication. The car then sped off. At the same time, I got a message saying the driver had cancelled the ride.

    This made me wonder if the driver came in o the site to press cancel while he was at the start of the trip, as I understand there is an option to say they couldn’t find the person. I would completely understand if the driver cancelled with a message that he had a phobia of dogs or severe allergy, but no communication, just cancellation, is poor.

    The app automatically assigned another driver six minutes away. I sent the same message about the guide dog and heard nothing back, but the app had told me that the driver had read the message, so I assumed all was good. I got another text saying that the driver was approaching and I could see it on the app. A car the right colour and shape pulled into a nearby driveway (carpark entrance), paused and drove away. At the same time, I got a message saying the driver had cancelled the ride. I wondered if they had seen Guide Dog Sienna and I waiting and cancelled.

    The app automatically assigned a third driver 8 minutes away. I sent my message and got a reply saying “got it” and saw it was read. This driver did arrive, called out and moved the seat forward so Sienna could sit in the footwell. He provided fantastic service. Unfortunately I missed my appointment due to drivers cancelling and the appointment had both late and cancellation fees which is super frustrating.

    I am left wondering why the first two drivers cancelled and drove away and suspect it was the Guide Dog. Guide Dog Sienna is highly trained before she became my guide and behaves beautifully in public transport, taxi and ride-share. Legally we can not be denied service based on the basis of her being a dog in these circumstances.

    I want to raise awareness of these rules and regulations in New Zealand for those who are not aware.

    I did send Uber a message hoping they could provide drivers with education around service animals and communication. I was impressed that my message to Uber help was answered with a phone call in less than an hour. The support person reassured me that their staff do have online training about service dogs and that the two drivers would be asked to complete this again and have their app restricted until this was achieved. They also gave me the 0800 phone number of the accessibility support team should this occur again.

    The crux is that even though I missed out on an appointment and paid cancellation fees, the positive experiences and changes having a Guide Dog brings far outweigh the experiences like this.

    This experience has strengthened my goal of educating this around me about access needs.

    A mission for a separate day is related to educating bus drivers about needs – not just access requirements but considering everyone getting off a bus. The photo below shows the bus platform at a station near my house. I got off a bus here and the bus driver stopped so that one of the poles on the side of the platform was directly in the middle of the door.

    As people were getting in as I was getting off, Sienna was watching the people and went around the pole and as it was so thin, I walked straight into it. Had the bus driver pulled forward 1 to 2 metres, this would not have been an issue. As it was, the pole is an issue for anyone, not just Guide Dog Teams.

    Local bus station with poles on the edge of the platform. Interestingly none of the other stations I have these blocking the way.
    This photo shows Sienna sitting at a different bus station waiting for a friend. Note no poles are blocking the platform!