Sofia: How much do I see?
How much can I see and how does it affect my everyday life? I explain the extent of my vision loss here to provide context for my other posts.
As you can perhaps imagine, there are plenty of embarrassing stories that come with being visually impaired - I have ignored people waving at me, failed to recognise someone I just had a long and deep conversation with and when I was about 10 I walked into a stranger's house by mistake, thinking it was my friend's. All pretty awkward situations at the time, rather amusing in hindsight.
The intention of this post is that after reading it, you should have a good sense of how much I can see and how my disability affects my day-to-day life. My hope is that it will provide some important context to my other posts so that you can better understand my study situation.
So let's get right into it. I have a condition called albinism. It affects about one in 17,000 people and is a genetically inherited disorder. It affects the body's melanin production, which means that skin, hair and the iris of the eye will have less pigment compared with that of a normal person. Most people usually think of white hair, very pale skin and red eyes when they think of albinism, but the conditions comes in a spectrum of various pigment strengths. I myself have blonde hair and blue eyes. I basically look very Swedish, which is fortunate and a bit ironic (people will often comment that I look like a typical Swede, where in reality I'm half German and would probably have ended up with brown hair were it not for the albinism). Similarly, I have met people where the albinism affected only their eyes, a condition known as occular albinism, and yet others who have even less pigment than myself.
"Seeing 15% means that what a fully sighted
person can see at a distance of 1 metre, I can
see at 15 centimetres."
It turns out that melanin is crucial to how the retina of the eye and the optical nerves in the brain develop, so most people with albinism have problems with their sight. Usually, this takes the form of short-sightedness which, importantly, cannot be corrected by glasses. The lack of pigment also means that the iris of the eye is patchy and doesn't fully shield the eye from light. A person without albinism can block sunlight by contracting their pupil and shield some of the light. For myself and others with albinism, the light instead goes through the iris, which means that people with albinism are very sensitive to stray light. When I'm outside, you'll often find me squinting even though the sun isn't that bright, and I've known others who wear sunglasses both indoors and outdoors (making them look pretty badass).
Now to how much I actually see, which is about 15%. How much is that really? To get a driver's licence in most countries, you need to see at least 50%. This is a very good rule; you definitely wouldn't want me or any other VIP behind the wheel when we can't the difference between a person and a post box from afar, yet alone read traffic signs that whish past on the motorway. As a result I'm eagerly following any news on self-driving cars. At the other end of the spectrum, pilots are required to see 100% without glasses.
There is a more concrete explanation for the percentages of sight. Seeing 15% means that what a fully sighted person can see at a distance of 1 metre, I can see at 15 centimetres. For example, the sign that you can read at a distance of 10 metres would have to be placed at 1.5 metres from me for me to read it.
But those are the more technical bits. What does this actually mean in day-to-day life?
As I already wrote above, my interaction with people can sometimes turn a bit awkward, but that is the exception rather than the rule. When I speak to another person, I can usually do so without a problem. What I can't do is see where they are currently looking, as if whether they are looking at my nose or at my shoulder. When people are far away, it can be quite tricky and I've sometimes answered questions that were directed to a person next to me. People who know me well usually say my name if they want my attention. On a similar note, finding a group of friends in a cantinas and or busy pub can be quite tricky. Again, nice people around me know this and will usually get up and come over to me, or shout and wave really loudly for me to notice them. I am very grateful for this every time, and I make sure to tell them this.
Reading signs is another interesting story. Most signs in the London underground, at airports and train stations are a decent size, save the train and flight timetables. To see these, I usually carry with me a monocular (that's like a binocular but for only one eye). When I was younger I was self-conscious about using it in public - I was afraid of what people would think of me. Now I don't really care - the fact that I need to find the gate to my flight is more important in the end.
In my home, there are only a few adjustments that make my life easier. The first and most important one is a monitor arm and an external screen that I connect my laptop to. Since I need to come close to text, I also need to keep my face very close to a computer screen in order to read the smaller text. Having a monitor arm ensures that I don't bend down and place extra strain on my back and shoulders, something I am more prone to doing anyway. I also invested in a laptop with touchscreen, which allows me to quickly zoom in on any webpage that I might happen to view.
So let's see how the visual impairment affects my study situation. The biggest challenge has always been the fact that I can't see the blackboard or screen used for teaching. How much I see depends strongly on how far away from the board I sit and how familiar I am with the topic. My brain usually compensates a lot for the fact that I can't see well, for example when I read text in small print. If I know the language well, I rely heavily on the shape of the word and the context in which it is used. I notice that this is the case when I come across a fictional name that doesn't sound English - I usually get the spelling wrong unless I read it very carefully. That's why I can use the general shape of what the teacher draws on the board and any other, non-visual cues to follow along with the lecture quite well.
This doesn't really work when it comes to physics and mathematics, however. You can read about why this is and how I deal with it in my other blog post. Also check here to see how doing physics labs went.
To summarise, I am lucky in the sense that my disability still allows me to lead a very independent life. People around me do help me in small but extremely meaningful ways from time to time, something which I am extremely grateful for. I hope that these examples have provided a sense for how much I see and how it affects my life. Please check out my other blog posts if you want to learn more about how I dealt with my visual impairment while studying physics at university.