sally.geek.nz

Category: Disability

  • How I see it … what does “working” mean for a Guide Dog?

    Since becoming a guide dog handler, one of the things that comes with it is more public wanting to interact. However, not with me with my Guide Dog Sienna.

    This post will give examples of recent interactions we have had with the public while Guide Dog Sienna was working in a 45-minute timeframe at a shopping mall.

    The environment and previous or planned activities need to be considered while we are working as a team. However, any unexpected distractions can cause knock-on effects that may compromise our safety.

    I have found that people are inherently curious about Guide Dog Sienna and often want to interact with her. What I find interesting is that often they do not interact with me or are disinterested in subjects that do not relate to Sienna. Most of the time, I encourage curiosity and take every opportunity possible to educate those around me about access needs.

    For example, when I asked someone to stop patting Sienna while she was actively guiding me and needed to concentrate. The person replied, “but she is just too cute and I wanted to pat her”. What this person and some others don’t seem to understand fully is that the dog is there for their handler, not for them. Their purpose and job are to detect dangerous situations or obstacles and ensure their handler is safe.

    Earlier this week, Guide Dog Siena and I were at Sylvia Park Mall with a friend. We had had a long day already and stopped in very briefly for one thing and were actively limiting the time we spent there to around 45 minutes maximum.

    As context, we were both woken to the earthquake and Te Aroha at 0330 and with the poor weather (rain and high wind), Sienna was not concentrating as well as she usually does. She was very excitable, wanted to play more than usual at home and when we were out, was very distracted and needed extra time and encouragement. For me this means that I need to concentrate more, it also means that she is more likely to interact with the environment around us which could ultimately be unsafe.

    Photo of a golden Labrador in harness in the sit position.
    I am working – my harness is on.

    Our first interaction was with a shop assistant, who got visibly excited to see a dog, kept circling us, not interacting with my friend or me and reached out to pat Sienna. Sienna responded by wagging her tail and watching the shop assistant. I was lucky she was doing this in the small section of vision I have and I could therefore intervene. I asked her not to interact as Siena was working and needed to concentrate. She went completely silent and backed away and left before I could talk with her more and another shop assistant came and asked me if she could help.

    The interaction in the shop caused Sienna to be even more distracted by her environment and she kept turning to face the door. As a result, I needed to concentrate on her rather than the task I was there to do. This was made more difficult by large cardboard boxes being unpacked on the shop floor, my need to move around these and Guide Dig Sienna trying to lead me to the door to leave (her reaction when she has had enough shopping). The extra cognitive load and responses to the environment for both of us prolonged our time there.

    The second interaction was at the cafe. My friend went to the bathroom and I ordered. I asked the server about the menu and she kept pointing at the overhead sign and asked if I could just read it over there even after I had explained the reason I was asking was that I could not read it. I had Sienna sitting between me and the counter while I ordered. I then asked about cold drinks and she pointed to a small printed sign saying just read this. I explained again I could not read it and asked if she had flavoured tea. The queue behind us was growing and the assistant looked stressed, so I asked for a soft drink that I knew would be available (but didn’t want) and turned to find a table to wait for my friend.

    I asked Sienna to turn around and find a seat. She was about to start doing this when a woman caught my arm, which distracted her from this task and meant she was left without me following through on an instruction to her and had to stop and talk with this person.

    The person who caught my arm said if you need some help, I can help. I know exactly what it is like. I have had keratoconus. I thanked her and explained I was okay and had ordered. She then repeated what she had said, expanding on her story about her keratoconus experience. While her words were genuine, I understood she wanted to talk about her experience. I acknowledged how hard that must have been for her and explained I needed to go.

    At the next table, there was a large family, two adults and four or five children. The two youngest children kept leaving their table and trying to get to Sienna. Their parents managed the other children and actively worked to keep the younger two away. Although this was distracting for Sienna, I appreciated that they understood Sienna was working and explained this to their children.

    On our way back to the car, we were stopped by a woman while we were walking (quite fast). She didn’t interact with Sienna but talked with me (a nice change). She explained that she volunteered at the Guide Dog Kennels and wanted to know Sienna’s name as many dogs she cared for do not go on to work.

    In my experience, most people know not to interact with their Guide Dog while working. However, what seems unclear to many is what working means. Is it only while they are walking? The short answer I use is when she’s wearing her harness. If a child pets Sienna without asking or makes a fuss to their parent about wanting to pat the dog, I use this as education and I often show them how the harness comes off and that they can pat her when it is off but not on.

    This was not the most convenient mid-stride, but a breath of fresh air as most people assumed I was training Sienna and when I explained she is my guide dog and fully trained, they either seemed to be less interested or said, “but you don’t look blind”. I will leave unpacking this for another time.

    The subsequent encounter was the real issue. While I was having a conversation with the volunteer from the kennels, another stranger walked up briskly and started patting and fussing over Sienna, who was sitting, waiting perfectly for us to finish talking. I said to the woman, “excuse me, please don’t pat her. She is working”, and she seemed taken aback by this request and said something like “but, I like dogs”, and left us to finish our conversation. Sienna was getting increasingly distracted each time a person stopped me or interacted with her and I could tell she just wanted to leave the mall.

    I finished the conversation with the volunteer and directed Sienna toward my friend’s car. Sienna was extraordinarily distracted and as a result, walked herself and me straight into a big metal 1.5 meter sign (video signage). We were both unhurt but if this had happened about 10 metres away we would have been in the busy carpark which is even more dangerous.

    What I have learned is that many people do not actually understand what working means for a guide dog. Some believe it is when they are walking along or actively guiding but it is more than that it is when they are wearing their harness. For this reason, I do not allow others to pat her while in harness. I know some handlers do let people interact while in harness but the majority do not to make this delineation clear to both the dog and public.

    As a result I plan to change my language and be more descriptive instead of just saying she is “working”.

    The key message here is consider the consequences of your actions. Even though guide dogs are cute and well behaved and are in public places they have tasks to perform and any interaction or distraction of a guide dog could in turn cause harm.

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  • How I see it … managing Auckland’s motorists

    Today the theme of cognitive load associated with low vision when interacting with the world continues. However, the focus has shifted from describing and questioning the problem to giving two simple real-world examples where a slight change from motorists could make a big difference to someone with low vision.

    Last week I posted a story to Facebook, which I will repeat here to set the scene.

    I took Sienna to the park as I had recently been too unwell to walk her all the way to work as usual (and still am) and she was becoming a little naughty as a result. On the way back from the park, we encountered an obstacle. I did use the Snap. Solve. and Send. App (https://services.snapsendsolve.com/accounts/referral?code=5EU1-1-0) to report this.

    A car completely blocking the foot path, long grass blocking the verge. The only way around is onto a busy road.
    An obstacle we encountered on the way home from the park.

    Guide Dogs are trained to avoid obstacles and thus decrease the cognitive load and visual fatigue associated with navigation of the environment.

    Guide Dog Sienna stopped to show me there was an obstacle. This one was challenging as not only was there long grass, a pole and uneven ground, but also a vehicle completely blocking the footpath.

    On a day full of glare, I find that lately, if the glare comes from above, such as a grey or sunny sky, it completely blocks my ability to see the scene. Six months ago, I would have been able to see through the glare, so even navigating a situation like this increases the cognitive processing and cognitive load for both guide dog and handler.

    One way I can get around an obstacle like this is to ask Guide Dog Sienna to “find the way” and she will find a way around. In this instance, she was hesitant because of the different hazards. Ultimately, we had to step out into the road to go around. The verge was another option, but the ground there is quite uneven. Going onto the road is hazardous in itself.

    One aspect of being a Guide Dog Team is looking out for each other’s safety. I judge the traffic and know the route and Sienna avoids obstacles. Judging traffic with 5 degrees of usable vision and decreased hearing on the right is much more challenging than when I had 90 degrees and normal hearing. Situations like this now need far more cognitive and physical energy to navigate.

    The energy consumption of navigating our community was something I may not have even noticed a year ago. However, this is often a challenge; what is hidden is the impact this can have on subsequent activities. For example, after navigating a busy shopping mall or area, I usually am tired, have a headache, have eye strain and am nauseous and typically change my plans to go home and rest.

    Last weekend, Guide Dog Sienna and I visited a local market with her sister Guide Dog Sasha and her handler Michelle. After an hour at the market, Michelle and I were both fatigued from the business of the market and the number of dog distractions at the market.

    Guide Dogs Sasha (left) and her sister Guide Dog Sienna while we were waiting for an Uber at the bus station after visitimg the market.

    At the market, I noticed more than ten dogs we passed in the crowd. These were of varying breeds, demeanours and behaviours and both dogs found navigating these distractions challenging. In turn, this can be challenging for the handlers as we may not see other dogs or people, couple this with a crowd and needing to manage the guide distraction while navigating a challenging environment and everyday activities like this can become less frequent and less accessible to many.

    Guide dogs are often distracted by other animals and people who reach down and pat them while they are in harness working. In their harness, guide dogs are vulnerable. They are trained not to react to situations many other dogs may respond to. In other words, they have little fight-and-flight reaction. This is a good trait as it makes them dependable in many situations, such as riding the bus or a plane, travelling on an escalator or crossing a road. However, other dogs and people are unpredictable and often, this relationship can distract the dog from guiding its handler, which requires intervention from the handler.

    Getting back to the point. The right balance of activities is vital but often does not match societal expectations due to the hidden nature of processing and fatigue associated with navigating society a disability.

    The reason this post migrated from Facebook to a blog post is what I found today. I went to get a coffee at a cafe around 1100 hrs as I needed a break from the screen at work.

    While at the cafe, I had taken a work phone call which was challenging and when we started walking home, I was still concentrating on solutions related to that call. On our way back, we found the following obstacle.

    Two cars blocking the footpath. Other hazards such as uneven ground, puddles in the verge, banners, power boxes and traffic.
    More obstacles we encountered today.

    In the above situation, we were lucky that Sienna could find a reasonably safe yet very suboptimal route. We ended up walking through a group of parked cars, employees and customers talking and uneven ground to get past.

    The complexity of navigating situations like this back to back with vision-heavy work can be fatiguing and has reminded me to listen to my own body and accommodate in relation to this.

    The point of this story is a little forethought from others (e.g. car parking and poorly behaved pet dogs) can have a significant impact on how a person who has a disability interacts with the world.

    I hope this story has given others an insight into the challenges of navigating a world that isn’t designed or socially accepted as inclusive for those with disabilities.

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  • 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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