sally.geek.nz

Category: Disability

  • 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 … timely reminders

    Today I was reminded of a few valuable lessons.

    After some time away from my job recovering from surgery, new students returned today, which meant being back on campus and in a lecture theatre in front of more than 200 students.

    Photo by Pixabay on Pexels.com

    For me, being in front of a class, explaining, unpacking, discussing and storytelling to make a point that may influence future practice is where I feel most at home. If people had asked me 10 years ago if I was happy public speaking, I most likely would have answered no. However, it is second nature and a place where I can make a difference by encouraging, inspiring, and motivating our future nurses to influence healthcare for the better.

    I went to work today subconsciously, expecting things to be the same as they had for the last 10 years. That I could walk in with ease and the confidence that I usually portray. On the surface, this is most likely what the students saw, but for me, it was a time that included uncertainty, vulnerability and adapting to the new normal.

    I have recently had complex eye surgery on my sighted eye. This has meant variable, distorted and blurred vision along with side effects of medications (including nausea, headache, blurred vision and high blood pressure). Along with this, my glasses prescription has changed, which has worsened the blurred vision and distortions. It will continue to change for another two months, and I can not afford to get new glasses now and then again in two months. Although I knew that my vision would change after surgery, and I had begun making adaptations, I had not anticipated the subconscious physical and emotional impacts.

    Usually, preparing and setting up for a lecture is a breeze. This time, I managed to anticipate some adaptations before arriving; however, I soon learned that some were different or more challenging than I expected. One example was using the lecture theatre computer and touchpad that controls lights, microphones, recording and audio. I had asked a colleague to help; however, as he helped, I noticed I had a specific way that I liked things set up that others may not find intuitive. My usual method meant I did not forget anything. But today, deviating meant that I omitted things that make life more comfortable for students, such as dimming the lecture theatre lights to see the slides better. While this may not seem like a big issue to many, it made me feel a little unsettled.

    Before arriving, I had decided to let the students know that I had recently had surgery and could not see as well as I usually did. I anticipated that this would be necessary when students outside of my field of view or blurred raised their hands to ask questions. As a solution, I planned to stop more frequently, check students’ understanding, and ask students to call out when they had a question telling me their name as they asked the question. This approach meant showing my own vulnerability to students. I usually do not have a problem showing students vulnerability while teaching. For example, letting students know when I do not know the answer to a question they ask. However, sharing personal information or admitting my limitations to over 200 people made me feel more vulnerable than usual and instantly doubt my decision to share the information and ability.

    The social context of education was highlighted as students quickly reverted to putting up their hands and waiting patiently to ask questions. While I noticed some students, I did not see others, which left me questioning whether they felt that their needs were met during that session. As a solution, I had already suggested students post questions unanswered to the discussion forum. To date (15 hours later), no students have posted questions, leading me to believe that students are OK. This situation highlighted how I rely on visual cues as feedback from students in group teaching sessions. In future, I plan to consciously make other avenues for cues more overt by encouraging students to use more verbal prompts.

    While the lecture and discussion were delivered and received with ease, maintaining the learning environment raised challenges, the timing was perfect. As usual, some students approached to ask questions at the end of the session. With my colleague who helped with the setup now gone, logging out of the computer became a challenge. I could not read the small menu of the lecture theatre computer, and the next class were filing in with lecturers waiting to take over the room. I ended up letting a student who was waiting to ask a question log out of the computer for me rather than initiating a discussion about this with the staff waiting to start the next class. While logging out was necessary. It reversed the traditional teacher and student role, where the student asks the teacher for assistance.

    I walked away from the class feeling that I had not performed as well I “should” or “usually” do and wondered how this might affect students. Several students approached after class, thanking me for easing them into the paper, which reduced their anxiety about the course while introducing some new concepts. This reminded me that we all come into a situation with our own fears, students around the unknown course content or expectations. Whereas I feared making mistakes in content delivery and students losing faith in me because I could not see them well enough to realize that they had questions. Interestingly, it wasn’t either of these things that I struggled with instead of the environmental tasks.

    The situation described above has predominantly reminded me that being honest about my challenges/showing vulnerability itself, be a teaching tool.

     

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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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