sally.geek.nz

Category: Reflection

  • How I see it … Thoughts on Equity

    Ensuring equity for all in a society of many with individual needs has been on my mind lately.

    Usually, I pride myself in delivering on this for others that I care for, work with and encounter and can reasonably do this but more. More lately, the volume of differing needs has increased, and because of this, I cannot keep to the standard I usually do due to sheer volume. This is a bitter pill to swallow and is something I am not happy about, but it is something that I alone can not change.

    Lately, I have become bogged down in not providing this for all and reverted to setting a solid line but on the other hand, why should I not provide equity for some? Then comes who do you choose … but this is a story for another time.

    My thoughts wandered to inequity when filling in a fatigue risk assessment form, and one of the checkboxes for high risk for fatigue is a disability. I knew this fatigue was real as my fatigue had increased proportionally to the decrease in my vision over the last year. However, I had never really applied this to myself before adding the equity lens. Instead of an equity lens, I have always have held myself more accountable and set myself higher standards and been harder on myself than I was for others because I had a disability and was afraid that others, as I did, did not view disability with an equity lens.

    Photo by Pixabay on Pexels.com

    When I think of equity, I immediately think of race first and then look to other contexts. As a legally blind person, I face inequity every day that makes things more challenging, for example, construction and moving barriers, walls and moving people may be nothing to someone who can see, but in my world, these equal cognitive ability to navigate or in the case of people, nausea and dizziness. I had never thought of this with an equity lens until I filled in the fatigue management form. My latest frustration along these lines is that readers will probably think this is rather strange; it is a building. Said building is in the line of sight of a bus stop I use every day. Before the building finished construction, I could make out the shape of the approaching bus. Granted, because I can’t read the bus number, I stopped every bus to ask – not the point, though. The front of the building is constructed so that it looks like the front of an approaching bus. This has made figuring out when a bus is approaching very difficult, meaning that I use energy and brainpower to process things constantly rather than just glancing to recognise an oncoming bus. This concentration on something others take for granted contributes to the exhaustion I feel after that bus ride.

    This is only one small example; I can think of much more overt, such as inaccessible software, hardware, houses, communities, schools and professions, etc.

    As someone who lives with a disability every day (that I wish I could turn it on and off like a light switch), all I want is to fit into the world and be good at what I do, be like those around me and make the world a better place to live in for everyone. Today, with this in mind and very high fatigue levels, I started to dream about an environment that was easier to access and didn’t cause fatigue and challenges. Right now, my first thought is to put this in the too-hard basket, but what I am really thinking is … when I get the energy … how can I change this?

    Back to what this narrative started with, why can’t I provide equitable opportunities for the volume of people I encounter? I have a friend who would say it is the same old story of the many versus the few. Why should these be black and white or exclusive?

    With this in mind, my lesson for today, the only thing I can really change is myself. In this case, I am going to change my standards. Apply an equity lens and give me a bit of a break from holding myself to higher standards than those around me because I live with a disability. Once this is achieved, on to fixing the rest of my world.

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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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  • How I see it …. a matter of perspective

    I thought I would continue along the theme of assumptions we make and judgements associated with these, along with a narrative about resilience being a rollercoaster ride.

    This reflection stemmed from an interaction with a healthcare professional today. I saw her with mild but relentless eye pain. She asked me how things were going, how my last specialist appointments went, and my MRI results. I relayed the results, discussions and a plan of having eye surgery on the next available theatre slot for this (January) to preserve my remaining vision. I proceeded to explain the surgery, risks, benefits, and success rates related to my conditions and what I was putting in place to promote the best possible outcome based on the research I had read. For this, I got the label “science geek”. At the time, this seemed like an excellent complement, but my response was rather superficial and detached in hindsight.

    When I got home, I recalled my blog post last week, where a member of the public told me I was “amazing” for managing to walk around a rubbish bin that was on the footpath. At the time, I was a little taken aback and quickly pushed this aside as something simple and applied my own assumptions of what I considered amazing, such as getting my PhD, being published, loving my job and passing on my knowledge. 

    This prompted me to analyse an earlier conversation with a healthcare professional and made me rethink my reaction to the difference in perspective about success. 

    The earlier conversation covered planning my needs post-surgery as I will not see much (which will prolong the uncertainty around the success for some weeks after). In this conversation, I was asked what I needed help with. At face value, this question seems simple. However, even as an experienced nurse, I wasn’t really sure what I would need. I could guess and, as a result, kept unconsciously relating things to how I see now and not what it will be like post the surgery. This included thoughts of I can do that, I don’t need help with that, or someone might need assistance more, or there is always someone worse off, which are my go-to responses.

    It wasn’t until she used more concrete terms and bluntly pointed out that she thought that I needed “urgent” referrals for daily tasks that I began to realise this wasn’t going to be as easy as I thought. Changing my mindset started with being asked the following two questions: 

    • Do you think you could make toast safely when you can’t see the toaster?
    • Have you ever made a cup of tea without any sight?

    To both of these questions, I paused and then replied – “I don’t know”. It was not until this moment that I realised that practice, tips, tricks and techniques were required before the need for them. As a nurse, it is logical to forward plan and assist others to prepare for their recovery as much as possible. However, applying this to myself as a patient who had not previously experienced total blindness was not as easy as I initially thought.

    She then asked about how I would get to follow-up appointments and even after the above realisation, my automatic problem-solving response was, I will get a taxi. Then she asked me if I had thought about how I would get into the building from the taxi on my own with no vision? My automatic response was that I already use a long cane and will be OK, but the truth was that I had not thought about it until that moment. What had not sunk in was that I use the cane with some vision, not with no vision, and these were two different experiences requiring different approaches.

    Photo by Castorly Stock on Pexels.com

    At this point, I noticed my thinking was as a nurse, not a patient. My mind was speeding through multiple potential problems and analysing these to find the best solution. As someone who is usually independent and confident in what I do, this conversation and analysis made small tasks such as making toast uncertain and seem impossible.

    In fact, a more robust approach would have been to turn off “nurse mode” and slow down, start asking questions to understand better what to expect, and then formulate a plan. 

    Yes, Shayne – if you ever read this – we discussed this just today in another context.

    Writing this has shown me that we all make different assumptions and what we do with these is the important part. Perhaps I will now need to start changing my focus so that the smaller tasks such as making toast and navigating a rubbish bin on the footpath are seen as a success.

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