Tag Archive | Albinism

Stereotypical/frustrating things I’ve heard as an individual with a Visual impairment

Hi everyone I hope you’ve had a good week and weekend so far. I’m thinking from now on I’ll probably just post every Sunday rather than Friday. At least that way I’ll have a bit more energy and motivation to write. I just want to apologise for not uploading sooner. I did have a bit of writer’s block/lack of inspiration before this lovely little idea popped into my head after reading some other blogs about the subject. This week I will be giving some examples of just a few of the things that piss me off the most when people find out that I’m visually impaired.

1. Won’t glasses help?
No, do you think that I wouldn’t be wearing glasses every day if they had a significant impact on my vision? My vision is due to the undergrowth of my retina’s. Thus not enough light is let into my visual cortex. Unfortunately, glasses can’t magically make the retina’s bigger.

2. But you don’t look blind?
No? Really? I never really thought I seemed blind either thank you very much. The mere fact that I managed to put my clothes on the right way round with a set of matching socks is beyond me. Dude, just because I have a visual impairment doesn’t mean I have to start rocking back and forth, walk like a zombie, wave my hands like a manic duck and try and take my eyes out by sticking my fingers in them.

3. I’ll pray for you.
Wait, hold up. I’m not religious or even slightly spiritual so you praying to your version of God is lost on me. Anyway, why would God decide to take away my apparent ‘suffering’ when he has bigger fish to fry like trying to cure cancer or righting the wrongs of child molesters? Your view of suffering is entirely messed up if you think I need your prayers to be healed.

4. How many fingers am I holding up?
Man, this is one of the oldest questions in the book. If I’m standing close enough, I can perfectly well tell you how many fingers I’m holding up and give you one or two well-chosen fingers of my own, thanks.

5. Are things blurry?
Again, another old question. No simple enough. My vision is not blurry it’s just not as sharp and defined as yours.

6. Do you want to feel my face?
Ew, piss off you weirdo. That’s one fetish better left to you and the misses in the bedroom thanks very much.

7. Do you know sign language?
Really? If you have asked a blind/visually impaired person this, then you are rather stupid. Seeing as sign language is a visual set of hand movements it really rather goes against the whole concept that anyone with a VI would be able to use it. Sign Language is for those who are hard of hearing/deaf and rely on their eyesight over their hearing.

8. You’re such an inspiration.
Great thanks, but you have very little insight into what is inspirational then. Malala Yousafzai, Mahat Magandi, Martin Luther King, they are examples of inspirational individuals because they have helped change the world in a positive way. All I’m doing is living my life and coping with any of the unique challenges it throws at me. You’ll have your challenges that I wouldn’t be able to deal with, so I’m by no means inspirational.

9. So can you/do you work?
Yes, I’m not completely incapable of earning my money thank you very much. I know it’s such a shocker that they let me out of my cage even long enough to do anything useful with my life. Oh and by the way? NO I DON’T WORK WITH COMPUTERS. I work in a school as an MSA and TA would you believe it or not?

10. Can you/do you live independently?
Well, I went to uni for three years, and I still have all my body parts, didn’t burn the house down, just about managed to feed and clothe myself, managed to pay bills and attend lectures and even make a few friends I would say that was a success, don’t you? Just because the government has buggered all us young people up by rising the housing marking prices so no-one could reasonably afford to live on their own for two seconds without going bankrupt and dying, doesn’t mean I couldn’t.

So yes those are just 10 things that can be quite common to hear and are frustrating as hell, hense my rather ranty and sarcastic way of writting. However I hope you enjoyed this post and managed to learn something whilst having a little giggle along the way.

Until next week my lovlies, have a good week :).

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 :).

Introduction to my Visual Impairment

Hi everyone how are you doing? I hope you’ve had a good week.

Today I will be talking about my visual impairment. I will try and explain as best I can, However, seeing as I have had this condition since birth I have no idea what it’s like to have full vision. Therefore, I have no real comparisons to give you. All I can do is tell you, as much as possible without annoying you, about the condition.

I shall do a separate post next week about what I can see and what I struggle with and how if affects my mobility and all the technological bits and pieces I use to help me in my daily life. This post is just a quick summary of the condition to make you aware of it and hopefully, give you some food for thought and if you want to investigate if further, you are more than willing to. in fact I urge you to.

I have a condition called OCA2 which is short for Occularcutanious Albinism type 2. Approximately 1 in 20,000 people worldwide are affected by some variation of OCA. ‘Albinism is a comparatively rare genetically inherited group of conditions which results in a reduction or complete lack of pigment (colour) in the skin, hair and eyes of people with the condition. This leads to pale skin which burns easily in the sun, virtually white hair, very severe short-sight and photophobia (a severe sensitivity to light).’ Albinism Fellowship, http://www.albinism.org.uk If you are interested in finding out more about the different types of albinism than there are a whole host of useful websites that can provide more detailed information on the subject, however, I am not a medical professional and don’t feel sufficiently well versed to give you that information.

However, what I can tell you is that whatever type of gene is affected the result of albinism is reduced to complete lack of melanin, which is the pigmentation gene. Occularcutanious albinism (mainly skin hair and eyes are affected) is the most common form of albinism. There are four types of OCA and depending on how much pigmentation you have depends on what number you are.

Type 1 = the least amount of pigmentation which can result in the stereotypical red eyes

Type 2 = slightly darker, yellowish or blond hair, blue eyes, slightly better visual acuity and creamier coloured skin.

Type 3 = typically more common among people of colour who may present with straw coloured hair and ever so slightly darker skin and hazel or brown eyes.

Type 4 = this form of albinism is very similar to type 2.

There are also a few other rarer conditions which have similar symptoms to OCA, however as they are separate conditions I shall not go into detail of them here.

As I have mentioned, I have OCA type 2. I have blue eyes, light blondish hair and relatively pale skin. However, the most difficult part of this condition in not the lack of pigmentation to the skin and hair. It’s the effect it has on my vision. My vision is, as recorded by specialist eye doctors, approximately 6/60 meaning I can see things at a distance of 6 meters that you can see from 60 meters away.

I also struggle with photophobia, no I don’t have a fear of having my photo taken, it means that I’m extremely sensitive to certain levels of bright or gleaming light. It can reduce my ability to focus on what I’m looking at and can make my eyes feel delicate and slightly sore after a while. I also have nystagmus which is an involuntary movement of the eye making it harder to focus on objects for too long. I am extremely short sighted which can be a real bugger sometimes, but hey ho all the cool people are short sighted, I joke of course.

People with OCA have to be very mindful of how much time they spend in the sun, and we tend to spend a fortune on factor 50+ sun cream because we turn into over-ripe tomatoes in 2 seconds flat if we’re not careful. Sunglasses are also a must have for those of us with OCA due to photophobia and the increased risk of developing melanoma of the eye. However, it does mean that we get to have lots of cool and fashionable sunglasses for all occasions, so there is at least one upside.

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