Covid-19 and Omicron have meant different things for people over the last few years. I thought I might share an experience I recently had while attempting to pick up a Rapid Antigen Test (RAT).
On Monday evening, I developed a sore throat and headache but was unsure if it was from the air conditioning at work that day or if I was sick. I decided to get a RAT ordered which was a painless exercise online until it came to pick up.
Two pickup locations in North Auckland were listed. One was at a vaccination centre 0800 m from my house and the other a 30-minute drive away in Orewa. On the website to order tests, both were labelled drive-through. Those who know me will know that I am blind and can not drive, so I decided to walk over to get one.
When I arrived, I was informed that I couldn’t walk through it was drive-through only. I explained I was blind and couldn’t drive but was still turned away. Granted, the day before, there had been an announcement on TV saying do not walk through at drive-through centres. However, that leaves those of us who can not drive or do not have access to personal transport having difficulty accessing RAT.
This meant getting on the phone to Healthline, where I explained the dilemma. I asked if someone could post me a RAT test. The answer was maybe, or we could ask someone working across the road at the centre to drop one-off. The operator couldn’t arrange anything and said she would escalate this, took my details and explained someone would be in contact.
Luckily, I only had a sore throat and headache for about 24 hours, but the issue is that I was unwell and didn’t want to pass on any bugs to friends, family and colleagues. Long story short, I still haven’t been called back or had any sign of a RAT test in the mail or delivered. In saying that, soon, I will have been asymptomatic for over 24 hours now and will likely work from home tomorrow, but the point is that others in this situation may also have difficulty accessing RAT.
Here is another exciting story about access in relation to location rather than disability. RNZ Story
I am tempted to order one from Amazon in Australia (AUD 49) and see if it turns up before anyone contacts me about getting me one. However, jokes aside, the point is that RAT tests are supposed to be free and accessible for those that need them in New Zealand, but not everyone fits the systems in place.
Today, I was informed by a healthcare professional that I didn’t fit into the neat and orderly categories that society defines for us.
We were discussing the challenges of reading print on paper, a screen and the multiple factors that influence this (lighting, angle, glare, fatigue etc.), along with the fact that traditional methods of magnification used in low vision didn’t work well for me because I have multiple eye conditions that cause the opposite effects.
For example, poor visual acuity usually benefits from magnification and good lighting. However, visual field loss and distortions from glaucoma mean magnification can reduce the area viewed, and more lighting causes glare. Similarly, using progressive or bifocal glasses to magnify does not work because my remaining vision is left lateral in my sighted eye (does not match the position of progressive or bifocal). This means that I use multiple different techniques at different times to compensate, sometimes magnification, no magnification, extra light, sometimes lights off. There is no one answer or solution.
I mentioned that those around me often have difficulty understanding that my needs constantly change and how much impact the environment has on what I achieve.
Their response was, “it is because you don’t look blind”.
I asked, “what does blind look like”?
They answered, “they do things, and you can tell”.
The appointment finished because we had tried many things and that there was no miracle solution. Moving between compensation methods and structuring what I do less fatiguingly was all we could change right now.
My question on “what does blind look like” was not answered adequately and made the healthcare professional uncomfortable. However, it has a much larger context than the opinion of one person and one interaction. What bothered me was that they implied that I might not get assistance when I need it because “I don’t look blind”. I went in thinking I had complete agency, but these assumptions made me reconsider.
It is well known that we all make assumptions about every situation we encounter. As a teacher, I do my best to guide students to recognise our own assumptions and see them for what they are – an assumption, with the important part being how we act or do not act on said assumption. I came away from the appointment thinking about the construction of assumptions and societal values.
I have written several blog posts previously discussing my adaptation from the sighted to the blind (low vision). These had included things like feeling like a fraud asking for help when I needed it, beginning to use a cane in public and labelling myself a part-time cane user. The societal perception of blindness influenced these situations and potentially the comment made by the healthcare professional today.
If I google the words “blind definition”, the following definitions.
adjective
unable to see because of injury, disease, or a congenital condition.
Lacking perception, awareness, or judgement.
verb
cause (someone) to be unable to see, permanently or temporarily.
Deprive (someone) of understanding, judgement, or perception.
What strikes me about these definitions is that they are all based on a deficit context and are worded to be “lesser” than what is considered “normal”. This isn’t surprising considering values and culture have been predominantly constructed by the larger proportion of the population – those who are sighted. A 2020 study of stigmatisation discussed this as ocularcentrism, suggesting that society perceives people with low vision as requiring lower expectations than those who are sighted. I have experienced this; at School, I was told by the Dean that it wasn’t worth me going on to do university entrance but to take several transition options because I had poor vision and getting a job after the sixth form was the best option for me. I used this assumption/stigmatisation to my advantage, travelled and then entered University as an adult, working my way through to gain a PhD. Even today, societal perceptions seem to remain lower for those who are blind, which matches the google definitions quoted above. I experienced this last year (see blog post) where I was stopped by a stranger while walking to work, and she said she thought I was amazing because I could navigate around a rubbish bin using my white cane. This was soon after gaining my PhD which was the standard I was holding for myself.
From my achievements, one might say that society hasn’t set me lower expectations, and I contribute the same as my sighted peers; I would argue that I have set myself higher than normal expectations and worked harder to compensate despite societal norms and values. The lower expectations have led me to want to prove myself. Yet, psychologically these definitions and perceptions are not easy to continually overcome, and I have found myself beginning to believe that I was lesser than those around me because of this. To compensate, I set myself higher expectations than I would for sighted people around me. . Furthermore, I put more pressure on myself to achieve and was reluctant to ask or admit I needed help. This reinforced the constructs that the blind need help, achieve less and are therefore of less value to society which led me to hide the extent of my disability until recently.
This was backed up by an interesting newspaper article featuring a friend of mine, Jonathan Mosen, who pointed out that AI (artificial intelligence), which is used in the employment industry to filter candidates, was designed in a manner that can be exclusive of those with a disability by virtue of the values the designers and data collectors hold. Reading this reinforced the unconscious bias that society holds for those with a disability.
Getting back to the “looking blind”, – I argue that I do things that I believe make me look blind:
I can not look straight at someone and have them in my field of view. Therefore, I have conversations with people where I position my head to make eye contact as it makes the other person feel comfortable, yet I cannot see their face.
If I look at a person in a crowd, they automatically think I am looking over their shoulder, so I attempt to compensate for this by pointing my nose straight at them.
I always walk slightly behind and to the right of someone to keep them in my field of vision.
When working, I sit with my computer screen very close to my face.
I actively avoid crowds, moving objects and groups of people or animals as these are unpredictable, and the movement makes me nauseous.
I will not venture out without sunglasses as the glare is problematic.
I rarely have any notes when giving a lecture or teaching a class (I memorise concepts beforehand).
I very rarely walk down a flight of stairs without holding the handrail.
To me, the above things make me “look” blind. However, others may have other perceptions as history, media and societal values and norms portray blindness with particular stereotypical behaviours that only apply to a few. I began my journey into vision loss with values and beliefs closer to those of society in general. Interestingly, the journey has led me to question my identity as someone who is “sighted”, “low vision”, or “blind”. Context is the key, and there are days where I feel like an imposter in each of these categories.
The key is who identifies the category, group or name that is the most important. In this case, I choose to belong to a particular population rather than decide by another. For example, today, I have experienced what I would consider being “sighted”, “low vision”, or “blind”, and the fluidity of these has allowed me to navigate my world.
I hope that this blog entry causes some discussion around the impact of society/culture on the language and constructs we use every day.
Over the last few months, I have been considering my direction in life 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 where I want to be?
As an academic, I have spent ten years 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 work with the Te Kukunetanga: Developing Cycle of Life Research Programme, which 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 suggest. 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 having a small research project I am leading underway where I am applying 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. I found it so distracting, time-consuming and frustrating. Neither of us realised at this time that the document wasn’t in a shadow font, but this was a change in my vision. This had to become the new normal quickly 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 come as a rather large hurdle. Several months ago, I wrote a blog post titled “is the 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 I was reflecting on asking for help and the post on workarounds was the number of things that have recently become the new normal 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 using 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.
