Daily life with albinism

Hi everyone I hope you’ve all had an enjoyable week.

In my last post, I gave you guys a brief overview of the more technical side of my visual impairment, Occularcutanious Albinism type 2 (OCA2). This week I want to give a brief insight into how this condition has and still affects me in my life so far. I won’t be going into any details about my experiences in both mainstream and SEN education or my experiences with discrimination in this post as I would want to go into further detail about that at a later date. So without any further ado, let’s get this party started.

So I was diagnosed at approximately two months old when my parents began to have concerns about me not looking directly at people and not reacting as a normal child would when people entered a room. After tests had been run, it was concluded in me having this particular condition.

From a young age, I was under the care of Professor Moor M.D at Moorfields Eye Hospital in London. I had to have yearly checkups. This would involve, primarily a lot of waiting around, before undergoing different tests, which would include having eyedrops to dilate my eyes. I would then have to place my head into one of those headpieces and look into a bright light, so the professional could see into the back of my eye to evaluate the structure of my eye and the development of my rods and cones which are two structures that make up the retina.

I would also have to do multiple eye chart tests to determine my level of acuity and long distance ability. I also had to read the different sized text in books, to see how small print could be before I started to squint and move forward to see it.

Luckily I only had to go through this long, arduous process once a yea until I was 18. My condition is stable, meaning it won’t get any worse and as I turned 18, the age at which you are legally considered an adult in the UK, I was informed that I didn’t need annual appointments anymore. Thus I would only need to go if I felt it necessary.

Luckily I have never needed to go back to Moorfields to this date, and hopefully, I won’t need to for a long time coming.

Yes so this is all good and well Ellie, but you haven’t told us how you deal with everyday life yet. Well hang on I’m going to get to that now you, my lovelies.

I want to start off by saying it’s very hard to try and explain what I can and can’t see as I have nothing to compare my vision too. However, I will try my best.

A lot of the time people will ask me if my vision is blurry. The simple answer to that is no. My visual acuity is pretty decent. It’s not as sharp as my peers without a visual impairment, though. The way I try and explain it to people is by comparing non-HD tvs to the new super sharp screen tvs.

I struggle a lot with long distance i.e. my long distance vision is just like ‘nope I’m not gonna allow you to see clearly what’s a long way away’. This can be a real issue when trying to read things like overhead train or bus stop timetables or overhead menus in restaurants and cafes, don’t even get me started on trying to figure out what drinks they have behind the bar at clubs. Trying to recognise people at a distance can make me feel like an awkward turtle as I won’t recognise them half the time unless I’m right next to them or I’ve passed them. I’m not rude at all, that’s not the sort of person that I am by any means. I haven’t really got a mean bone in my body. However, just knowing that I can appear rude because of my sight is one of the big pet peeves I have about having a VI. If ever you were to ask me if I would have normal sight if I could most of the time I would say no but this issue is one of the two main reasons that I would say ‘yes please’ to normal sight, that and the ability to drive.

When trying to read labels or descriptions on the back of products? Well, lets just say I have no idea how I ever existed before I had my iPhone and it’s assistive technology to help me with that one. I remember the first ever phone I had. Well, sort of It was an updated version of those classic Nokia phones back in the day. Looking back now, I can safely say the screen was an absolute B***H. The screen size was terrible, the picture quality was awful and played havoc with my eyes, and the lack of assistive technology was crazy insane.

When I first got an iPhone, I started off with the 4S, my mind was blown, and I’ve never looked back since. The picture is fantastic, the inbuilt assistive technology, zoom and voice over on every Apple product, works seamlessly and the screen size of the 6S plus that I have at the moment is incredible for me. I also have a very useful app that turns the phone into a magnifier. This app/technology is far superior to any manual hand held magnifier I’ve had in the past. It means I can finally read books, labels, letters, bus and train timetables, etc. with ease and I don’t need to spend an extra £600 on a separate, electronic magnifier because the picture is so smooth, seamless, sharp and clear.

I am in love with apple products, the only thing I don’t have is the laptop. As I mentioned above,  the inbuilt assistive technology is amazing across the bored, there’s no need for any additional costs for things such as JAWS or Supernova, which are screen enlargment/reading systems that you have to pay for and manually install on the computer/laptop. These external systems can be quite expensive and can sometimes be prone to crashing and taking up space on the computer’s internal storage.

When travelling around and about, I’m ok I don’t have any particularly significant issues. The main concerns for me come in the form of stairways, as I have minimal depth perception trying to figure out how deep a step is can be a real nightmare at times. Another issue that I have troubles with is when the colour of the ground changes, e.g. when they have patterns in on flat surfaces in the town centres, because it can sometimes look like there is a step there when there isn’t.

Sometimes people with a VI prefer to walk on a particular side of someone else i.e. the individual prefers to walk on the right or left hand side of the people they are with depending on various factors. I myself tend to walk on people’s left side (the person is on my right hand side) because my left eye is stronger. Therefore, I am able to gain more information about the world around me and react to it quicker because my field of vision isn’t so dominated by the person. It’s a strange sense of relaxed comfort that many, including myself can’t explain to our sighted friends but it’s just a normal day to day way of life for us.

Another issue that likes to creep up on me is my ability or lack thereof to judge how far away moving objects can be, correctly. This is especially tricky in the case of bicycle users as they are not very visible in the first place.

Sometimes, if my eyes are tired, dry or just generally having an off day, I can find it harder to navigate as it’ll take me longer to process the information that I’m receiving because my eyes simply can’t take it in all at once. This is also the case when it’s dazzling outside, and I’m blonde enough to have forgotten my sunglasses.

So this has been quite a long, brief, overview, of how my sight affects my daily life. It can be tough to explain to people sometimes, because, if like me, you were born with a stable condition and you’ve never known any different, you make small allowances without even realising it. That’s just the reality of life for many people with a disability, it’s normal for us, and you know what? That’s ok that’s what we’re used to we know no different and we just carry on with our lives in our unique way.

For now my lovelies I shall love you and leave you until next time. HJave a great weekend :).

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