sally.geek.nz

Category: Low Vision

  • How I see it …. self and societal expectations in relation to equity

    Today has been a long day that has caused me to reflect on the influence of disability on work-life balance and the societal expectations and the impact these have on our ability to achieve sustainably.

    I will give a background and a fur baby story to set the scene. I have been quite sick with atypical pneumonia, narrowly escaping a stay in the hospital with fast talking and daily check-ins as there was no care for my fur babies at home.

    Last night I finished my last meeting at 1930 and felt energised and ready to change the world, metaphorically speaking. I went to bed soon after as I knew I had to be at work by 0730 for an early international zoom meeting.

    This morning I was woken by the fur babies at 0430 because they were hungry. It started with a 15-year-old cat named Sylvester, who came and sat on my chest. When I woke, Guide Dog Sienna, who had just turned two, joined the circus, trying to get my attention. Last but not least is my younger cat Annie who found a toilet roll I had on the bed (as I still have the remnants of a cold) and decided to attack / shread this.

    Guide Dog Sienna a golden lab retriever trying to wake me up at 0430. By sitting over me and looking down.
    Guide Dog Sienna when I woke up this morning.
    Sylvester an aging black and white cat who sat on my chest.
    Sylvester after I removed him from sitting on my chest.
    Annie a black and white cat who was busy shredding the roll of toilet paper on my bed at 0430.
    Annie shredding a toilet roll at about 0430.
    The three culprits that woke me up at 0430.

    As someone with rapidly progressing blindness, getting enough sleep and pacing visually fatiguing activities is an essential part of self-care. I recently came across some research explaining the effect cognitive load associated with low vision and was surprised at just how much effect this can have.

    I had experienced a similar realisation about cognitive load when moving from travelling a white cane to guide dog travel. Travelling using my vision and white cane relied on more cognitive load to process the environment as I needed to find and process objects. In contrast, a guide dog avoids objects, thus, decreasing cognitive load and visual fatigue. This can be compared with a chaotic and decision-dense paediatric resuscitation where the increased cognitive load can lead to potentially life-threatening errors. Some examples of literature around this are below.

    With this and other research in mind, cognitive load affects performance. Bringing the story back to the impact of vision loss on cognitive load.

    Today I needed to go through about 140+ assignments to make sure all instructions were followed / elements included as there were differences between markers and I needed to determine the extent of the problem before I could ask for any assistance. This a very vision-heavy process that would not be required if no disparity was found in moderation. This is probably only the second time I have needed to go through this many in 11 years.

    Adding in less common tasks like this adds visual processing and cognitive load. What I gave no thought to was the impact of this visual task on my day and week after needing to do this. I had already been told that there was no extra staff this week to help and knew that we were already behind in returning work as I had been very sick and unable to moderate. So I just got on with it; a process had served me well in the past when I had more vision. However, now with less vision, I need to be more aware of the consequences. To give context, I have a total of about 5% of the visual field of a person who has no field loss.

    The personal consequences of doing this are multifaceted and include eye pain, headache, fatigue, nausea and more which often continue for a day or two. One situation I noticed today was with two people at my office talking to me while I put on Sienna’s guide dog harness and a group of about 2-4 people approaching. I hesitated between removing Sienna’s lead and putting on the harness for enough time for her to escape and follow one of her favourite people. I can usually manage the visual processing of that many people if I am not already visually fatigued. The processing, headache and eye strain did not allow me to respond quickly at this point, causing chaos around my retrieval of said Guide Dog. It wasn’t until reflecting on this situation for future prevention that the fatigue and cognitive load components of this became apparent.

    The consequences of not looking over all the assignments are potentially increasing student distress and anxiety as well as answering many more emails asking how long until results are out of dispute announcements. One dilemma this raises is what is more important, the needs of one versus the needs of many. Do I want to prevent stress, anxiety and emails, or do I add them to my workload later?

    I easily forget that I can’t always approach things the way I traditionally have. For example, I throw more of my personal time at something or spend all day on it to make it happen when it causes a new set of problems or issues to resolve later. This raises blurred boundaries and expectations around what is acceptable when taking work home to complete it.

    Is there an expectation it will be finished despite the work time available? Who’s expectation is this, an employer or employee, workplace culture or societal view?

    With low vision in mind, one of my ways to mitigate decreasing vision has been taking work home to complete. However, the downside is increased fatigue and cognitive load, so a delicate balance is required. It would be interesting to find out how others feel about taking work home to complete as an accommodation to mitigate a disability. Why this seems acceptable in some situations and not others? Is this equitable?

    A similar concept is a trend in society to expect others to do more with less on a constant or continual basis in multiple aspects of our lives.

    A consistent message has been to do more with less on many fronts, for example, in healthcare, education and volunteering. In the past, phrases like keep calm and carry on, have been valued and, in turn, may have become an expectation rather than a mantra. One could argue that this concept could be applied to other situations as the output of an action is valued more than the vehicle to get the output. I question the sustainability and wonder if this mindset influences a culture of competition, blame and inadequacy for some.

    We need a social change in areas such as nursing or healthcare to value a person and their experience on a journey rather than measuring the outcome. Suppose we continue to be conditioned to value the outcomes above over the vehicle. By subscribing to this, are we creating an inclusive and equitable culture?

    From a personal lens, I wonder how much society has influenced me to value others over myself. Or in the case of student anxiety above my health or comfort? Similarly, with a progressive disability lens, does valuing the outcome without consideration of the journey allow an equitable situation?

    I hope sharing my thoughts has provoked some thought and conversation.

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  • How I see it … thoughts on accessibility in Auckland

    Recently I completed an interview on accessible places in Auckland for Stuff, which led me to reflect on the messaging around access needs and the normalisation of poor access encouraged in our society.

    When asked what places in Auckland had good accessibility, I found this difficult to answer. Firstly I thought, what does good accessibility look like and then how do I explain the complexity and nuances involved?

    So often, I see one size fits all solutions being implemented in many contexts. While in some situations, these may make a difference for some, they may not. This approach also promotes a societal perception of a singular solution and singular experience of disability and access needs.

    Suppose I relate this to my disabilities, which are blindness and hearing impairment. With both of these, there is often a societal perception of have or have not. You are blind or are not, which again promotes a singular problem and solution.

    As an example, if I am working with my Guide Dog Sienna, the majority of the time I am in the community, people will either assume I have no vision or am fully sighted and am training her. I was standing outside the Art Gallery in Auckland yesterday talking with someone and I was approached by one tourist and their friend who wanted to photograph my Guide Dog. They asked me if I was training Sienna, and I replied, as I usually do, “no, she is my guide dog”. The tourist promptly said, “but you don’t look blind”.

    My initial thought was to answer, “what does a blind person look like”? But in my experience, sarcasm isn’t a good educational tool. So I let them take a photo and explained that many forms of blindness manifest differently and individuals’ experience of these is also unique instead of focussing on “the look” of someone who is blind.

    With this in mind, in the interview, I expressed the role that people play in making a place “accessible” and that making a place accessible is multifaceted and doesn’t always relate to physical access needs alone.

    My experience of the UK and some of Europe in 2019 was that access needs were more normalised and a part of everyday life at most tourist attractions. While in many cities, the physical access needs were less developed than in some of NZ, it was the forethought, staff attitude and availability of things like audio description, touch tours longer timeframes for those with access needs that made a big difference. In the place I went, there was more of a willingness to individualise experiences, for example, asking “how can I best help”, “would you kike some assistance”, “here is what we offer” and so on. In the UK, on multiple occasions, I was offered a large print menu automatically.

    Sally standing in an exhibition with a guide a dog Sienna sitting next to her.
    Accessible Audio Described tour at Auckland Art Gallery.

    In NZ, people will make assumptions I can not read a menu. They may be right in some situations, while in others, I can read a menu. There are so many contextual influencing factors like the size of the print, the contrast and layout of the menu, how visually fatigued I am and the environment’s lighting. Many times I will walk up to the counter in a cafe and ask what flavours of drink they have, only to have the person behind the counter say they are written over there, point at a board on the wall that I can not see and their body language or demeanour will show that answering that question is an inconvenience.

    Often my answer is would you mind telling me as I can’t read them, or pulling my phone out and taking a photo of where they are pointing to zoom in and try to read this. Often the time taken in doing this is considered a further inconvenience by some staff, exacerbating their original issue and negative perception of disability.

    There are multifaceted solutions here that include addressing physical access needs and ensuring an inclusive and positive environment. Another example, just yesterday, before my interview, was entering a cafe for a drink. I asked about flavours and then asked if the counter staff could point me in the direction of a free table as the cafe was very busy, all the tables I had seen on my way past weee full and there were a lot of moving people. First I got “over there” without hand gestures, so I assumed they were using their eyes to indicate this. I said excuse me, what direction is that and she answered, “outside”

    One solution I particularly liked overseas was restaurants and bars that have a table number in large print and Braille with an app to order. As a blind person navigating crowds to a counter to order is challenging, I gravitated to this option when available as the menus etc., were already accessible.

    Those who know me well will know I like good local coffee but dislike Starbucks for many reasons. However, despite what I consider to be better coffee elsewhere, I find myself ordering from Starbucks at times because they have app-based ordering and payment options.

    In response to the need for social change, I developed a website celebrating good access experiences in NZ (http://www.shoutoutforaccess.com). However, as a time-poor academic, I am struggling to keep the momentum of this social change initiative and the financial commitments of the domain name and hosting charges. If anyone would like to assist with maintenance or sponsor this site so that user logins and self-posting could be added, please reach out.

    Back to the overall theme of accessible tourism in Auckland. The question that keeps springing to mind is, “who’s responsibility is poor accessibility in society?” my answer to this would be everyone, with education leading to social change is the key component.

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  • How I See It … six months with Guide Dog Sienna

    On the 1st of October, it will be six months since Guide Dog Sienna entered my life! To mark the occasion, I will write a series of posts over the next few weeks explaining the difference working with a guide dog has made for me.

    It seems like a lifetime ago that Guide Dog Sienna arrived at my house. In reality, it was 1 April 2022 and we promptly began our training the next day. At the end of the training, we were released into the world and that is where much of the learning began!

    Sienna a Golden Labrador cross sitting next to our geaduation photo.
    Sienna sitting next to our graduation photo – a gift when we graduated as a guide dog team.

    The most significant change I have noticed is that I am more confident when out and about in unfamiliar environments. Working with Sienna has considerably decreased the fatigue associated with navigating the environment with deteriorating vision.

    I will describe an example. I had not noticed that I had unconsciously stopped going out as much and was experiencing extreme fatigue due to vision changes and associated cognitive load with getting around my environment.

    One particular instance where this was particularly challenging was after I got a new hearing aid and had a professional event after work with a health informatics organisation I support (about a year ago) in a part of town I was unfamiliar with.

    I did my usual preparation with bus routes and arranged to call a friend to get me when I arrived at a local Pub as I was worried I would not be able to see her in a crowd so we could walk the rest of the way together. This journey meant walking through the city at dusk during rush hour. I had lost about 30 degrees of my central vision over the preceding six months and was pushing myself to keep engaging in my professional responsibilities.

    I was walking up Victoria St in Auckland, there was rush hour traffic, many people bustling and dreaded road works that made the route different to what I expected. The sun was going down and reflecting of a building making it very difficult to see anything. I was using my cane but because of the new hearing aid and vision loss the visual and audible stimulation this situation became overwhelming. So much so that I needed to stop, sit on a nearby bollard and close my eyes to recover a little.

    To give more context, I had about 20 degrees of vision on my left lateral side (now I have about 5-10 degrees). In this area, my vision is patchy and my brain fills in the gaps in vision that the blind spots obscure. When I am tired or in fast-moving crowds, my brain stops being able to fill in the gaps. This causes distortion, nausea and dizziness.

    After five or so minutes, I continued up the road to the Pub, texted my friend and I waited for around 10 minutes. I followed this up with a phone call which went to answer phone. By this time, the street was even more crowded, so I went into the pub to look for them. There were four large areas. I scouted around all of these, hoping that one of the groups would recognise me or I would recognise one of their voices.

    Unfortunately, I didn’t recognise anyone and no one called out. I went back outside where I had arranged to meet my friend and called again, getting her answer phone. By this time, the visual distortion from the crowd and traffic made me nauseous, dizzy. and emotionally drained. I was already tired from a typical work day, so I decided it would be best to go home and skip the awards dispute wanting to go. I left my friend a message saying I would get something to eat and head home because I couldn’t find the group.

    I retraced my steps, realising I would need to walk some distance to get the bus home, so I stopped at a small cafe to get a cup of tea. My friend called me as I finished my tea, saying her phone was in her bag and she got my message. We agreed she would wait outside the pub. I decided to join the group and returned to the Pub.

    With the fatigue associated with getting there, I found interacting with the group in a noisy social environment almost impossible and had run out of energy. In hindsight, this may have been an excellent opportunity to listen to my body and go home to rest.

    However, I chose to push on my goal had been to reengage with professional obligations, colleagues and industry. We walked as a group down to the company hosting the event.

    Awards were given, and food and drink were shared, but I was so exhausted I couldn’t engage at the level I usually would have. I was lucky my friend noticed and arranged a lift home for me with a colleague, as the travel to the event had left me physically and emotionally exhausted.

    I had applied for a guide dog about eight months before this occurred, thinking that it would be something that would be useful later in my life. I had heard that the wait time was 2-6 years and that getting a guide dog was something of the future. It was after this that I realised that perhaps working with a guide dog was something I needed at that time rather than in the future.

    If I contrast this with similar events now with Guide Dog Sienna, the difference is immense. Last week we went to Wellington to a Digital Health Leadership Summit, which was all city centre, unfamiliar routes and many people and moving objects. However, having Sienna there decreased my visual fatigue and cognitive load as she helped me avoid people and objects as opposed to locating and navigating them with a white cane and vision. This means I don’t need to use my remaining vision or interpret tactile feedback and is the difference between participating fully or in a limited fashion.

    Sienna curled up under the seat in front of me on the Plane on our way home from Wellington last week.

    While I didn’t attend one function, this wasn’t related to my vision or fatigue but redundancy notices at my work that I wanted some downtime to process that announcement.

    So the conclusion of my first post about the difference that Sienna has made is that she has allowed me to function with less cognitive load and visual fatigue in my job.

    I can’t end a blog post without some Sienna cuteness.

    Sasha left a golden labrador guide dog with Sienna right a dark golden labrador waiting at the bus stop together. Both in harness in down position.
    Guide Dog Sienna with her Sister Guide Dog Sasha last weekend when we went out for dinner and a show.

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