sally.geek.nz

Category: Equity

  • How I see it …. a taste of the hidden cost of disability during a pandemic

    Person in a hoddie with his face covered by darness
    Photo by Kaique Rocha on Pexels.com

    With Auckland back in Level 4 lockdown, I thought I would share some of the hidden costs of disability in a pandemic.  Please note – this is based on my own experiences and I can navigate these, but others may have their own unique challenges.

    The costs I will discuss are related to a basic need (access to food) and a legislated requirement (getting a Covid-19 test).

    You may be aware that I am legally blind and have low visual acuity and a reduced visual field which makes transport and reading grocery labels challenging in everyday circumstances.  Lockdown raises hidden challenges for many people and I thought I would take some time to address some of those that I have experienced in the hope that readers can learn from these.

    Screenshot of Twitter PostOn the weekend, I posted to Twitter about my experience getting groceries when I had spent three days trying to place an online shopping order (I still haven’t found somewhere that has a delivery slot within a week).  Usually, it would be a 20-minute walk to my local supermarket, however, choosing this option comes with pros and cons. I am limited by what I can carry and many trips to the supermarket would put me and others at risk of spreading Covid-19.  Similarly, if you add walking and queuing to get into the supermarket along with the extra time reading labels and prices as well this can mean being out for an extended period of time. Alongside this, moving objects such as people, cars, trolleys and other things add nausea making the experience unpleasant.  For these reasons I always generally shop online, about four days ahead.

    During the last lockdown, I was added to the Priority Access list for groceries at Countdown and ordered groceries a week in advance easily.  What is different this time is that there are absolutely no delivery slots, even for those who need them.  I have tried most available supermarkets and food stores that deliver without a subscription and have found no slots available at any.

    One of the messages from the government is “shop normally”, however, the new settings related to the Covid-19 Delta variant, we now have all people who have been in the same location as a positive Covid-19 case isolating at home are now considered close contacts.  This means they can not leave home and also need to order their groceries online.  This raises an interesting dilemma when we already start with an uneven playing field.  There are a lot of questions:

    • how is the need for groceries need to be measured?
    • who gets priority access to groceries?
    • how is this regulated and policed?
    • how do we locate those who need food? E.g. have no one to assist
    • what contingencies are in place for those who can no get access?

    Recently I have noticed the media has picked up access issues but for the most part, the focus is on those who are self-isolating.  My immediate thought was what about those following instructions who already are challenged by access on an everyday basis.  We also need to eat.

    Top three news posts related to supermarket online shopping:

    I am privileged to have friends who are willing to grocery shop for me if I ask.  Although, it is worth mentioning that if someone does shop for me this decreases my risk of spreading or contracting Covid-19 it does put them at risk of potentially causing them and others harm.

    Yesterday I found out I was at a location of interest with an infected person for about 25 minutes and needed to get a Covid-19 test today. While on the phone with the Healthline representative I took the time to ask about any processes for getting groceries for those who found accessing supermarkets difficult with the intent of spreading the answers to those in need.  The two suggestions I was were “ask friends”, “call the student volunteer army“.  To be honest I had expected more information from Healthline considering we are told to phone for Covid-19 related information.

    As an experienced nurse, there were a couple of things that concerned me about that phone call but for now, the important point in this post is access and the hidden costs related to Covid-19 Lockdown.

    The Covid-19 briefings have mentioned that testing and vaccination-related to Covid-19 are free.  I beg to differ there are many hidden costs for both of these.

    On discussing where I could get a Covid-19 test the Healthline representative and I went through all locations within an approximate 8 km radius and discussed the wait time of up to 5 – 8 hours at some for a test.

    The closest testing point that the Healthline representative offered (1.3 km away) was not completing the tests at the current time.  The next suggestion was the local Urgent Care (2 km) who informed me they were not doing Covid-19 swabs at present and to go to the local drive-through testing station.  The next closest (2.5 km) was a drive-through only and because I am blind and am in a bubble on my own this caused a dilemma.  I could go to this testing station in a Taxi but 5 – 8 hour waits for a test were being reported at that time so getting a Taxi became too expensive. This ruled out everything within walking distance.

    The next suggestion was getting a bus.  Bus timetables are limited, but that was not the main issue.   Where I live the buses either go to the CBD (12 km) or local bus station (3 km) and change busses to get elsewhere.  The Healthline worker had suggested minimising bus travel particularly if I needed to change busses at a station leaving only the CBD as the only option by bus.  At the time of this call, there was no public testing centre available in the CBD so these options were both ruled out.

    The next option is my GP (4 km), the GP were able to do Covid-19 testing, but not at my usual practice.  I needed to go to their satellite clinic which was further away (about 8 km).  By this time I was rather over trying to contact testing locations and figuring out how I could access these and decided to pay for a Taxi to the GP satellite clinic for a test.

    While the processes used by my GP practice was impeccable (shout out to one of my ex nursing students who took the test) it was getting there was costly.

    Costly in more than one way.  Firstly there was the stress of explaining the context, disability and reasons that drive-through clinics could not be used. Emotionally the process of locating an accessible option is tiring and illustrates sub-optimal access but it highlights a negative component of living with a liability reinforcing some of the views discussed in my last blog post. The next cost is the price of getting a taxi ($23 each way) a total of $46 for one test.

    While I can afford to pay for this there are many of my friends and acquaintances with circumstances that can not afford the monetary cost of this without careful planning.

    The part that eventually prompted me to write this blog post is that the taxi driver who took me to get tested for Covid-19 told me that he had just come from a District Health Board Covid-19 testing centre that was not advertised to the public about 600 m from my house with no queue.

    This got me thinking.  I immediately entered problem-solving mode, thinking about solutions to manage flow access testing centres.  However, I quickly realised this needs a coordinated response and opted to publicise the need for streamlined processes for those who can not access services in a Covid-19 Lockdown.

    As my tweet pictured above suggests – if you can shop for groceries in-store please do.

    Online Grocery Shopping

    Here are some online grocery stores that I found while trying to get some groceries delivered:

    No Delivery Slots Available

    Reported Delay in Delivery

    Subscription / Membership

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  • How I see it … a dichotomy – the influence of appearance on society and society on appearance

    Today, I was informed by a healthcare professional that I didn’t fit into the neat and orderly categories that society defines for us.

    We were discussing the challenges of reading print on paper, a screen and the multiple factors that influence this (lighting, angle, glare, fatigue etc.), along with the fact that traditional methods of magnification used in low vision didn’t work well for me because I have multiple eye conditions that cause the opposite effects.  

    For example, poor visual acuity usually benefits from magnification and good lighting.  However, visual field loss and distortions from glaucoma mean magnification can reduce the area viewed, and more lighting causes glare. Similarly, using progressive or bifocal glasses to magnify does not work because my remaining vision is left lateral in my sighted eye (does not match the position of progressive or bifocal).  This means that I use multiple different techniques at different times to compensate, sometimes magnification, no magnification, extra light, sometimes lights off.  There is no one answer or solution.

    I mentioned that those around me often have difficulty understanding that my needs constantly change and how much impact the environment has on what I achieve.

    1. Their response was, “it is because you don’t look blind”.
    2. I asked, “what does blind look like”?
    3. They answered, “they do things, and you can tell”.

    The appointment finished because we had tried many things and that there was no miracle solution.  Moving between compensation methods and structuring what I do less fatiguingly was all we could change right now. 

    My question on “what does blind look like” was not answered adequately and made the healthcare professional uncomfortable. However, it has a much larger context than the opinion of one person and one interaction.  What bothered me was that they implied that I might not get assistance when I need it because “I don’t look blind”.   I went in thinking I had complete agency, but these assumptions made me reconsider.  

    It is well known that we all make assumptions about every situation we encounter. As a teacher, I do my best to guide students to recognise our own assumptions and see them for what they are – an assumption, with the important part being how we act or do not act on said assumption.  I came away from the appointment thinking about the construction of assumptions and societal values.

    Photo by Monica Turlui on Pexels.com

    I have written several blog posts previously discussing my adaptation from the sighted to the blind (low vision).  These had included things like feeling like a fraud asking for help when I needed it, beginning to use a cane in public and labelling myself a part-time cane user.  The societal perception of blindness influenced these situations and potentially the comment made by the healthcare professional today. 

    If I google the words “blind definition”, the following definitions.

    adjective
    1. unable to see because of injury, disease, or a congenital condition.
    2. Lacking perception, awareness, or judgement.
    verb
    1. cause (someone) to be unable to see, permanently or temporarily.
    2. Deprive (someone) of understanding, judgement, or perception.
    What strikes me about these definitions is that they are all based on a deficit context and are worded to be “lesser” than what is considered “normal”.  This isn’t surprising considering values and culture have been predominantly constructed by the larger proportion of the population – those who are sighted.   A 2020 study of stigmatisation discussed this as ocularcentrism, suggesting that society perceives people with low vision as requiring lower expectations than those who are sighted.  I have experienced this; at School, I was told by the Dean that it wasn’t worth me going on to do university entrance but to take several transition options because I had poor vision and getting a job after the sixth form was the best option for me.  I used this assumption/stigmatisation to my advantage, travelled and then entered University as an adult, working my way through to gain a PhD.  Even today, societal perceptions seem to remain lower for those who are blind, which matches the google definitions quoted above.  I experienced this last year (see blog post) where I was stopped by a stranger while walking to work, and she said she thought I was amazing because I could navigate around a rubbish bin using my white cane.  This was soon after gaining my PhD which was the standard I was holding for myself.  

    From my achievements, one might say that society hasn’t set me lower expectations, and I contribute the same as my sighted peers; I would argue that I have set myself higher than normal expectations and worked harder to compensate despite societal norms and values.  The lower expectations have led me to want to prove myself. Yet, psychologically these definitions and perceptions are not easy to continually overcome, and I have found myself beginning to believe that I was lesser than those around me because of this.  To compensate, I set myself higher expectations than I would for sighted people around me.  . Furthermore, I put more pressure on myself to achieve and was reluctant to ask or admit I needed help. This reinforced the constructs that the blind need help, achieve less and are therefore of less value to society which led me to hide the extent of my disability until recently.

    This was backed up by an interesting newspaper article featuring a friend of mine, Jonathan Mosen, who pointed out that AI (artificial intelligence), which is used in the employment industry to filter candidates, was designed in a manner that can be exclusive of those with a disability by virtue of the values the designers and data collectors hold.  Reading this reinforced the unconscious bias that society holds for those with a disability. 

    Getting back to the “looking blind”, – I argue that I do things that I believe make me look blind:

    • I can not look straight at someone and have them in my field of view. Therefore, I have conversations with people where I position my head to make eye contact as it makes the other person feel comfortable, yet I cannot see their face. 
    • If I look at a person in a crowd, they automatically think I am looking over their shoulder, so I attempt to compensate for this by pointing my nose straight at them. 
    • I always walk slightly behind and to the right of someone to keep them in my field of vision.    
    • When working, I sit with my computer screen very close to my face.
    • I actively avoid crowds, moving objects and groups of people or animals as these are unpredictable, and the movement makes me nauseous.
    • I will not venture out without sunglasses as the glare is problematic.
    • I rarely have any notes when giving a lecture or teaching a class (I memorise concepts beforehand).
    • I very rarely walk down a flight of stairs without holding the handrail.

    To me, the above things make me “look” blind.  However, others may have other perceptions as history, media and societal values and norms portray blindness with particular stereotypical behaviours that only apply to a few.  I began my journey into vision loss with values and beliefs closer to those of society in general.  Interestingly, the journey has led me to question my identity as someone who is “sighted”, “low vision”, or “blind”.  Context is the key, and there are days where I feel like an imposter in each of these categories.

    The key is who identifies the category, group or name that is the most important.  In this case, I choose to belong to a particular population rather than decide by another.  For example, today, I have experienced what I would consider being “sighted”, “low vision”, or “blind”, and the fluidity of these has allowed me to navigate my world.  

    I hope that this blog entry causes some discussion around the impact of society/culture on the language and constructs we use every day.

     

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  • How I see it – Is inclusion or equity, a series of workarounds

    Today I would like to address some topics that are not usually visible in the disability world. Firstly, I will state the problem, express how these make me feel, and discuss solutions or final thoughts. Please note these views are my own.

    As a background, I have had permanent rapid visual field loss over the last six months and currently have around 20-30 degrees of vision on my left side. The recovery has included adapting to my environment, having surgery, and returning to my full-time job after this. What I didn’t expect was the fatigue and sensory overload associated with this change. I hope that the following narrative makes it easier for those around me to understand and assist others in their own journey.
    After my recent surgery, I was pleased and exhilarated to have some remaining functional vision. At the back of my mind was the fear of completely losing what I had left, which thankfully did not occur. As time went on, I discovered many more problematic tasks than six months ago. I have learned that I can still do all that I could, but I have needed to slow down and adapt to everyday activities. For example, reading a recipe, shopping, and cooking are achievable tasks, but they take more visual effort, energy, and planning.

    One thing I did not expect was the effects of sensory overload. I had experienced this a little in crowds previously, where the movement of others made me feel nauseous. I have noticed more recently that everyday situations can cause a similar response. For example, a combination of everyday environmental factors can cause visual overstimulation. In other words, the combination of rush hour traffic movement, glare, and the noise becomes challenging to process simultaneously. As my visual field has narrowed, I have unexpectedly found my other senses, like my hearing, are more sensitive. For example, loud noises seem more irritating when I rely on hearing more than sight and easily distract me.

    A side effect that I have noticed with less vision is a drop in my energy levels. This stems from the need to constantly use energy to compensate and interact with the world, which causes an underlying feeling of constant fatigue. For example, I wake refreshed, energetic and ready for the day, yet when I arrive at work, I am already drained from the visual concentration of my journey to work. Similarly, reading takes more attention and visual effort, which means working slower. There are tools to help with this, for example, screen readers and other equipment. However, along with the positive effect, each has its limitations. For example, magnification means things are easier to read. However, there is less on a page, and the reading fatigue is still there. Screen readers are great. However, this relies on software and hardware being accessible in a compatibility sense and cost and availability. One of the biggest lessons I have learned from navigating this is that living in a world that is not native (designed) for those with a disability but relies on a series of workarounds to achieve the same goal.

    On a positive note, interacting with the world through workarounds can make one adaptable, resilient and adept at problem-solving. However, is moving through life via constant problem solving and “workarounds” to achieve a similar quality of life to others equitable or sustainable?

    While writing this, I took a long pause here to reflect on equity from multiple perspectives. I kept circling back to equity regarding Te Tiri o Waitangi and the effect this has had on our society. While the cause of inequity may not be the same, there are some similarities in effect. Correspondingly, the solutions are treated as similar, but they are different. With this train of thought, I circled back to the fact we are trying to solve equity issues by treating them similarly, which I believe is not the most effective method.

    Photo by Matteus Silva on Pexels.com

    I have concluded that when there are no acceptable workarounds, it is time to speak out about hidden challenges. Issues that I have strived to solve myself need to become known instead of invisible. While there may be no way to solve these immediately and may take some time and a path change, I believe this is worthwhile for those who follow.

    I designed, built, and tested software several years ago as a concrete example of my learning. At the time, I thought it was good enough. Now I realise just how many things that I took for granted in that design make it more difficult for those with a disability to use, and I wish I had spent the time upfront to investigate rather than causing the need for workarounds later.

    In answer to my heading – Is inclusion and equity a series of workarounds? For me at the moment, yes, I hope that in the future this will change.

     

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