Today has been a long day that has caused me to reflect on the influence of disability on work-life balance and the societal expectations and the impact these have on our ability to achieve sustainably.
I will give a background and a fur baby story to set the scene. I have been quite sick with atypical pneumonia, narrowly escaping a stay in the hospital with fast talking and daily check-ins as there was no care for my fur babies at home.
Last night I finished my last meeting at 1930 and felt energised and ready to change the world, metaphorically speaking. I went to bed soon after as I knew I had to be at work by 0730 for an early international zoom meeting.
This morning I was woken by the fur babies at 0430 because they were hungry. It started with a 15-year-old cat named Sylvester, who came and sat on my chest. When I woke, Guide Dog Sienna, who had just turned two, joined the circus, trying to get my attention. Last but not least is my younger cat Annie who found a toilet roll I had on the bed (as I still have the remnants of a cold) and decided to attack / shread this.
As someone with rapidly progressing blindness, getting enough sleep and pacing visually fatiguing activities is an essential part of self-care. I recently came across some research explaining the effect cognitive load associated with low vision and was surprised at just how much effect this can have.
I had experienced a similar realisation about cognitive load when moving from travelling a white cane to guide dog travel. Travelling using my vision and white cane relied on more cognitive load to process the environment as I needed to find and process objects. In contrast, a guide dog avoids objects, thus, decreasing cognitive load and visual fatigue. This can be compared with a chaotic and decision-dense paediatric resuscitation where the increased cognitive load can lead to potentially life-threatening errors. Some examples of literature around this are below.
With this and other research in mind, cognitive load affects performance. Bringing the story back to the impact of vision loss on cognitive load.
Today I needed to go through about 140+ assignments to make sure all instructions were followed / elements included as there were differences between markers and I needed to determine the extent of the problem before I could ask for any assistance. This a very vision-heavy process that would not be required if no disparity was found in moderation. This is probably only the second time I have needed to go through this many in 11 years.
Adding in less common tasks like this adds visual processing and cognitive load. What I gave no thought to was the impact of this visual task on my day and week after needing to do this. I had already been told that there was no extra staff this week to help and knew that we were already behind in returning work as I had been very sick and unable to moderate. So I just got on with it; a process had served me well in the past when I had more vision. However, now with less vision, I need to be more aware of the consequences. To give context, I have a total of about 5% of the visual field of a person who has no field loss.
The personal consequences of doing this are multifaceted and include eye pain, headache, fatigue, nausea and more which often continue for a day or two. One situation I noticed today was with two people at my office talking to me while I put on Sienna’s guide dog harness and a group of about 2-4 people approaching. I hesitated between removing Sienna’s lead and putting on the harness for enough time for her to escape and follow one of her favourite people. I can usually manage the visual processing of that many people if I am not already visually fatigued. The processing, headache and eye strain did not allow me to respond quickly at this point, causing chaos around my retrieval of said Guide Dog. It wasn’t until reflecting on this situation for future prevention that the fatigue and cognitive load components of this became apparent.
The consequences of not looking over all the assignments are potentially increasing student distress and anxiety as well as answering many more emails asking how long until results are out of dispute announcements. One dilemma this raises is what is more important, the needs of one versus the needs of many. Do I want to prevent stress, anxiety and emails, or do I add them to my workload later?
I easily forget that I can’t always approach things the way I traditionally have. For example, I throw more of my personal time at something or spend all day on it to make it happen when it causes a new set of problems or issues to resolve later. This raises blurred boundaries and expectations around what is acceptable when taking work home to complete it.
Is there an expectation it will be finished despite the work time available? Who’s expectation is this, an employer or employee, workplace culture or societal view?
With low vision in mind, one of my ways to mitigate decreasing vision has been taking work home to complete. However, the downside is increased fatigue and cognitive load, so a delicate balance is required. It would be interesting to find out how others feel about taking work home to complete as an accommodation to mitigate a disability. Why this seems acceptable in some situations and not others? Is this equitable?
A similar concept is a trend in society to expect others to do more with less on a constant or continual basis in multiple aspects of our lives.
A consistent message has been to do more with less on many fronts, for example, in healthcare, education and volunteering. In the past, phrases like keep calm and carry on, have been valued and, in turn, may have become an expectation rather than a mantra. One could argue that this concept could be applied to other situations as the output of an action is valued more than the vehicle to get the output. I question the sustainability and wonder if this mindset influences a culture of competition, blame and inadequacy for some.
We need a social change in areas such as nursing or healthcare to value a person and their experience on a journey rather than measuring the outcome. Suppose we continue to be conditioned to value the outcomes above over the vehicle. By subscribing to this, are we creating an inclusive and equitable culture?
From a personal lens, I wonder how much society has influenced me to value others over myself. Or in the case of student anxiety above my health or comfort? Similarly, with a progressive disability lens, does valuing the outcome without consideration of the journey allow an equitable situation?
I hope sharing my thoughts has provoked some thought and conversation.
I need one no-demand day (usually a Saturday) each week. I work part-time Mon-Friday and because I work for my church Sunday kinda becomes a work day too. If I get carried away on a task and don’t notice the time I will get terrible fatigue and sensory overload, and will not be able to function well outside of work. As a caregiver for an autistic family member, I also have to retain enough mental dexterity to manage unexpected (perceived) disasters in a calm manner no matter what time of day or night. This doesn’t happen very often, but when it does I have to respond immediately and de-escalate without causing further distress.
Today I tried to do a click-and-collect. It’s the busiest time of year for me at work, and I had done a lot of late-night de-escalation recently, including on Saturday. I went to the wrong counter, only to be redirected to one right next to the fragrance aisle, with the cue partially blocking the entrance to the store, while various people were trying to return items but didn’t have proof of purchase. My ankle was sore after an earlier stumble, and trying to deal with all the inputs was just too much. I left the extra shopping I had picked up and abandoned the cue, and slept for 3 hours once I got home.
Work/life balance is vital because life outside of work is challenging enough without the added burden of a disability, both of them invisible in my case. Work isn’t the only stressor in life, nor is it the only priority. This has been worsened by difficulty accessing support due to the multifaceted effects of Covid-19 on society and the health system, especially mental health access.
I hope your furry support workers let you have a wee sleep-in tomorrow!