Last week I was writing an abstract for a conference presentation that looked at the perceptions of accessibility in digital health from a consumer, clinician and developer perspective and it led me to reflect on assumptions and perspectives each sector brings.
This reflection led me to think about the impact of how much we share or don’t share about the experience of disability. How much or what do others understand in designing of access needs.
I have spent much of my recent years trying to look sighted, hide the fact that I had low vision and get on with things because I wanted to fit in. This raises a question, in choosing not to share this information, have I made it more difficult for myself later after losing more vision and becoming medically or legally blind?
In society, we are conditioned to keep things to ourselves that may be difficult for others, are different or considered personal or might be a burden to others. In doing so, have I made it more difficult for others to understand why I may need some assistance or rest? Similarly, has my silence contributed to the societal perception of disability by omission or stopped others from learning about the lived experience of disability?
With this in mind, I thought I would describe what I see (or don’t) and describe some of the impacts this has in everyday life, in particular the things that society and even the blind community often do not discuss.
I will start with the clinical information. I have one sighted eye. In that eye, I have about 5 degrees of 150 to 180 degrees of vision remaining. While in optimal conditions, I see pretty well in that five degrees. It is considered low vision and my vision varies from day to day and is very dependent on the environment.
When people often think of blind, they immediately imagine this as seeing nothing. In my experience, what I see is often more problematic and fatiguing than what I do not see. For example, in my 5 degrees of vision, what I see is very patchy. Some parts are clearer than others. I often see flashing lights, blind spots and blurred areas, which can move considerably with the pressure of my eye (usually, it is now low five mmHg or under – 12 – 20 mmHg is optimal).
This means continual visual fatigue; what this is like for me is often experiencing visual overload, and my brain doesn’t keep up with filling in the gaps—holding my head at different angles to get the best vantage point and squinting to be able to see an object. The result is constant neck and back pain, headaches, fatigue and eye strain/pain. I have noticed more recently that if I do any visual activity on the weekend, it takes me time to recover and to work optimally during the week. This means reducing my usual fun activities on the weekends and resting. Picking and choosing what to do or attend to and listening to my body.
For example, I booked a matinee play I wanted to see yesterday several months ago, but the amount of visual fatigue and workload at my job meant I slept through the time I was meant to be there. I was fortunate to get a ticket for the last showing but had to pay twice and use taxis instead of the bus, which quadrupled the original cost.
Back to what I do see. In the upper left, there is swirling light, and if I look above the midline, a band of glare obstructs what I can usually see, causing discomfort. For this reason, I look at things from a different angle and wear sunglasses a lot more than many people do and have an office at work away from the windows with dimmed lights.
My brain sifting through all of the abnormal visual activity is very distracting and fatiguing. I have had colleagues say how you are. I often reply fine or good because explaining visual fatigue is complex and challenging for people to imagine. I have said tired; the responses I have had are things like “you are always tired” or “yes, we are all tired”, so most of the time I don’t say the extent of fatigue or anything about it.
Another quite disconcerting symptom is nausea. When around multiple moving objects, such as a crowd, I become nauseous from the visual distortion and movement. Having Guide Dog Sienna has helped enormously with this, as I can walk with my eyes shut in crowded areas to decrease nausea and increase my confidence when out and about. However, along with a guide dog comes barriers. For example, I was denied entry to places because I have a dog, such as certain Spotlight stores and my local Dairy. Uber drivers were cancelling the job because I have a dog, even though I put in the comments I have a guide dog that sits in the car footwell.
Guide dogs are allowed into these places, shops, public transport, and rideshare; however, some people do not understand or know of this. They assume a dog is just a pet dog. I spend a lot of my free time educating others about access needs, equity and many other related concepts in a kind and compassionate way so that people may have a little insight into why I do things differently.
This blog post and Guide Dog Sienna’s blog and Facebook page are freely available examples of this, alongside giving presentations, discussions, answering questions and encouraging others to ask.
I guess what I would like to get across is that we are all learning to interact in an environment and have different values, beliefs and contexts, which all add to the narrative of any situation. It is these things that add richness to our human nature and lives.
With this in mind, I am privileged to have worked in several different sectors, including clinician, educator, researcher, computer admin, software development and I am a consumer of these with access needs that offers a unique perspective.
Back to how this blog post started submitting an abstract for a conference that covers digital, clinical, developer and consumer or lived experience perspectives combining technical, clinical and social constructs is unique and I am hoping that this will be accepted and am looking forward to presenting on a topic that will inform on many levels.