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 then discuss some 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 going back 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 as well assisting 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. What I have learned is I can still do all that I could, but I have needed to slow down and adapt how I do 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 am relying on hearing more than sight and can easily distract me.

A side effect that I have noticed of 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, not only in a compatibility sense but also 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.

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 change of path, I believe this is worthwhile for those who follow.

As a concrete example of my learning, I designed, built and tested some software several years ago. 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.

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.

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, now, 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 some 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 were 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 hand and waiting patiently to ask questions. While I noticed some students, I did not see others, which left me questioning whether students felt that all of 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, and 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.

How I see it …. a matter of perspective

I thought that 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 and how my last specialist appointments went and about my MRI results. I relayed, the results, discussions and a plan of having eye surgery on the next available theatre slot for this (January) in an attempt to preserve my remaining vision. I proceeded to explain the surgery, risks, benefits and success rates related to my conditions as well as 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 in hindsight, my response was rather superficial and detached.

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 own assumptions of what I considered amazing, such as getting my PhD, being published, loving my job and passing on my knowledge. 

This not only prompted me to analyse an earlier conversation with a healthcare professional but also 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 be able to 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. On face value, this question seems simple, however, even as an experienced nurse, I found that I wasn’t really sure what I would need. I could guess and as a result, kept unconsciously relating things back 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 began to realised 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 followup 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? To which 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.

Perspective

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, turn off “nurse mode” and slow down, start asking questions to gain a better understanding of 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.

How I see it … what we do with our assumptions

I was reminded several times in the last week, just how our assumptions can influence and impact others. There are two examples of this I would like to discuss. The first was challenging my own beliefs when I went to a Christmas Concert featuring the Auckland Symphony Orchestra among other performers. The second was the assumptions of others.

At a Christmas Concert on the weekend, I found myself wearing sunglasses when I usually would not have needed to. It made me recall some assumptions I made as a child of around 13 years old. I typically associated a blind person as someone who could not see anything, wore boxy blacked-out glasses indoors, at night as well as outdoors and needed to tap around a white cane and had to have help with “everything”. Over the years, I had learned that this assumption was not the norm, however, at times, thoughts creep back in, and I need to remind myself that my assumptions are not necessarily generalisable. This experience caused me to reflect on why I was wearing sunglasses when I was wearing them and how much these helped me.

Two of my multiple pairs of sunglasses.

What isn’t apparent in my story so far is that I was wearing my sunglasses at night when it was dark. There was a method to my madness in this instance, as the glare from the oncoming traffic, street lights and concert lighting coupled with a crowd of 3000 – 5000 people was a little overwhelming, and the sunglasses made visual stimuli and using my vision manageable.

My realisation was that I was “just like” the assumption my 13-year-old self made, which was slightly confronting and made me consider how I wanted to be perceived. Which is a confident, independent and well rounded person who just gets on with what she needs to do without brining attention to herself.

This led me to reflect on how I wanted to be perceived and why I was so afraid of being recognised as a blind (or low vision) – or in a nutshell as different. I came to the conculsion that this was because of societal perception of blindness as a deficit (as an aside, I am an academic who is struggling not to link this blog post with a theorist, model or research but continue it as an informative story of life). In true academic fashion, this led to more questions than answers, so I decided to present the beginning of my list:

  • Is low vision actually a bad thing?
  • Why is it often depcted in that manner?
  • Why do I often believe it is “bad”?
  • How much has society had to do with this assumption?
  • How and why did society come to those conclusions?
  • Why do I revert to believeing these societal norms?

I didn’t want to be known as the person with “low vision” or the person who “can’t see” because this mindset is one of a deficit, where society seems to hold different standards.

For now, I will park the theoretical component of these questions and explain how these concepts relate to my experiences. Over the last six months, in particular, I have noticed my visual field getting smaller and have not been seeing some things around me. Interestingly, I feel I have been conditioned not to let those around me know or help when I am finding things difficult and get on with things myself. For example, in a crowded meeting today people got up and moved towards the door leaving a wake of scattered chairs which i promptly fell over. My response was to get up and continue with my day and fly under the radar.

A prime example of lower standards occurred when I was walking to work on Friday (rubbish collection day). There are usually multiple wheelie bins on the footpath. While these make annoying obstacles (and I need my sunglasses to even see them) they are a necessity of life in the community. As a response, I tend to use my cane more to determine how far away they are. During my walk I was passed by a woman and smiled, saying good morning and kept on walking. About 20 metres down the road, she stopped me and said with conviction: “I think you are amazing” going on to say “I watched you get round those rubbish bins … you are just amazing”. I didn’t know how to respond and opted to say thank you and kept walking.

This person had made a few assumptions in her statements, and I was left feeling that I was being judged for my low vision (I do acknowledge my assumption here). I thought about this for the rest of my walk to work, and it cemented how much that assumptions that are prevalent in society can influence your own self-perception and in-turn self-esteem. I would like to think that I am amazing for what I contribute to the community rather than navigating around a rubbish bin. While I measure myself against my contributions to society as a person, academic, nurse, volunteering, project work and as a leader in my own right, it would appear based on assumptions others may have much lower standards.

Tattoo with binary code that says "I am enough"

This comes full circle to how I respond to these assumptions, in other words, what I can control and what I can not. I have concluded that all I can control is how I choose to perceive myself and decide to promote myself to the world. I would like to be honest and acknowledge that my response to this is that self-perception and esteem is impacted societal assumptions, and I often set myself very high expectations to counterbalance the deficit model described above.

To remind me of the influence of society, I recently got a tattoo where I can carry a message to myself as a constant reminder. I will let the readers decode the tattoo, be aware that I have left the first four digits off of each row.