How I see it … Finding my direction

I have been considering my direction in life over the last few months and deciding where to focus my energy next. Many people would say their goal in life is similar to world domination, to be the best and promote themselves above others to get where they want to be. But I keep asking, is this an accurate measure of success and is this where I want to be?

I have spent ten years as an academic watching the system we work in make or break us with headlines or tag lines of “publish or perish” and the stress associated with surviving a complex work environment with constantly changing competing demands. This week I was reminded why I chose to do the job – to help and inspire others to be the best they can be.

Recently Covid-19 has caused some changes in the delivery of our content, some for the better and some challenging. Being back in front of the class in person, using multiple modalities to help our students achieve their dreams while getting to know a particular cohort of students learn while figuring out how I can best assist or facilitate their learning, is one of the places where I am happiest and feel I can make a difference.

My second love is in innovation, ideas and problem solving which lately has been in planning and implementing research. This year I have had the opportunity to do this working with the Te Kukunetanga: Developing Cycle of Life Research Programme that has allowed me to learn from some amazing people and extend my research knowledge. For example, how to manage a large study and use my curiosity and passion for data and data management to drive this direction for this particular study and then “cross fingers” the University. What I particularly value about this team is the level playing field anyone can make a suggestion. Everyone gets stuck in making things happen regardless of their experience, position, knowledge. From this experience, I have learned some valuable skills around building a research team and have a small research project I am leading underway where I am starting to apply these skills.

There have been both ups and downs; for example, I have a student who will submit her work to complete her Master’s Degree in three weeks. It has been amazing to see her develop and complete an excellent project. On the downside, this experience bought new challenges. For example, I was coaching this student formatting her thesis and I struggled with something that has always been simple in the past. Being familiar with technology (and PhD in computing), I could not figure out how to remove the shadow font throughout her document that I found so distracting, time consuming and frustrating. What neither of us realised at this time was that the document wasn’t in a shadow font, but this was a change in my vision. This had to quickly become the new normal and yet was just another thing to slow me down.

As someone who holds myself to high standards, the need to ask for help and extra time to complete something was a new experience this year and not an easy thing for me to do, until now I have managed to finish things early and ahead of others so the fact I couldn’t came as a rather large hurdle. Several months ago, I wrote a blog post titled “is inclusion or equity a series of workarounds” noting the need to work with systems that were not accessible and therefore caused an environment that was not as inclusive and slowed my work. What struck me when reflecting on asking for help and the post on workarounds was the amount of things that have had to become the new normal recently and the realisation that the constant change and figuring out solutions and relearning everyday things can become a job in itself. However, I have also learned that with permission to use small tweaks or lateral thinking / working can help.

Thursday, I watched a live stream of my second cousin’s graduation from a university in England. What struck me was the formality and stark differences from our graduation. Yesterday I was privileged to attend what I consider the best graduation ceremony I have attended in my career thus far. It was filled with celebration of individuals and their place in the world; families in the audience participated in the ceremony more than I have ever seen before. It reminded me of the people we serve, the families and sacrifices that many make to attend university and why it is important to celebrate this. This and the last few weeks of teaching have reminded me that I am in the right place to make a difference for those I encounter.

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 being able to deliver on this for others that I care for, work with and encounter and can reasonably do this but more and more lately, the volume of differing needs has increased, and because of this, I am not able to 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 the fatigue from this 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.

When I think of equity, I immediately jump to 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 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 just 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; much more that I can think of are even 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 myself 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.

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.