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.
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.