Tag Archive | Visually impaired

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 :).

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What would I say to a class of kids with Visual impairments?

Hi everyone I hope you’ve had a good weekend despite the rain that has decided to descend upon us here in England.

Today’s post will be ever so slightly different, regarding style. I’m going to be writing a post as if I were writing a speech to be given to young people who are visually impaired or who have any form of disability. I would want to empower people without sounding too condescending.

This idea comes off the back of my sixth form days that I spent at a specialist school for people with visual impairments. Every so often we would have people come in to talk about what they were doing in terms of their work. In my memory the majority of people who came in to speak to us worked in office work or in IT.

I’m a firm believer that if an individual knows their own abilities and limitations and fully utalizes all possible help they can achieve great things and don’t have to fall the steryotyplical jobs or unemployment. So without further ado lets go.

Hello everyone my name is Ellie I’m 26 years old and I work in an SEN school for children aged 3 – 19 with moderated to profound and multiple learning disabilities.

When I was younger I didn’t have a distinct idea of what I wanted to do or be when I grew up. I always fancied myself as a famous personality however, I think a lot of little girls of about 10 or 11 are drawn to the luxurious, glitz and glamour that fame can bring. The fantasy of being remembered and known by everyone, not feeling like an invisible face in the crowed is also an exciting part of that world.

As I grew older my mentality started to change. I thought about being a nurse at one point in my life. Nevertheless, I went to uni, studied contemporary performance, applied myself and came out with a good solid 2.1.

During my time at uni I volunteered at a theatre company for adults with learning disabilities. Through that contact I sarted doing part time support work for two of the young ladies who attended the theatre company.

Up until that point in my life I had no real idea of where my life was headed, what I wanted to do after uni or how to go about finding interesting work. It was this one oppitunity that gave me that all inportant light bulb moment.

For the first time in my life I had an idea as to what sort of work I would be interested in doing. I wanted to work with people. More specifically I wanted to work with people with a disability. I found the work interesting, diverse, challenging and never boring. I’m not someone who could have a 9 -5 office job. It wouldn’t take that long before you would find a shrivled, drivaling puddle version of me loytering in the corner somewhere. But that’s just me. We are all differnt and find different things fun and attractive.

Once I had finished my degree I was once again at a bit of a loss of what to do and where to head. My degree subject had not given me any knowledge or training in the type of work that I thought I could possibly persue. So what the hell was I going to do next?

In the September of 2014 I started a degree in Learning disability nursing. This, I thought would set me out for a good, long and prosperous career. Due to my lack of proper support. lack of understanding from the university, naievaty and lack of technology to help aid me I was not allowed to continue the course.

This was a devistating turn of events and one that I hadn’t really factored into my thinking. During my time at school and my time doing my first degree I had become accustomed to having my needs met, having help and not really having to think to much about the impact of my sight.

This experiance, therefore, taught me a great deal. Understand how you’re sight impacts your learning and work style, accept that you do need help and don’t be afraid to ask for it. Utalize every possible aid that you have access to, to help you improve your chances. Be prepared for set backs and lack of understanding and pre concieved judgments concerning your ability to perform certain tasks.

Unfortunatly we still live in a world where employers and educators in mainstream settings don’t have the right knowledge, stratagies and techniques to help you. You have to be the one to prove what you are capable of. Don’t shy away from what you want and need. Accept, embrace and utalize every possible stratagy to help break down the barriers that you may face.

Even if you don’t know what you want to do now accept that there will be oppitunities that arise in your future that you can’t imagine arising at this point in your life. When they do arise don’t shy away from them. Grab hold of them and figure out how to persue what you want to do. No one can tell you what you can and can’t do until you’ve tried it. Only after all stratagies have been exhausted can you truely know if someting is working for you or not.

We all have to accept that there will be certain things that we may never be able to do, driving for instance, being an airline pilot, it is rather unlickly that we will ever be able to fight for queen and country. However, you are a human being full of possibilities. You are worth every once of what you give the world.

You may have an excellent eye for maths or the sciences, something I would give an arm and a leg to be good at. You may be able to chanel the likes of Dickens or Shakespere. You may be the next Beyonce, Michael Jackson or Bill Gates. You may feel strongly about activism and change the world. Who knows, the possibilities are endless.

Knowing or discovering who you are, your passions and you’re ideal work enviroment is the most important factor for your future. Don’t settle for second best just because someone else says so. Don’t caunt yourself out just because you have a visual impairment. You deserve the right to equal access to the work that you want and need to do.

You are the person who dictates your future. In the course of your life you will come across bumps and junctions in the road. You may feel lost and unsure of how to find your way again and you know what? That’s normal. In fact I would go as far to say it would be rather strange if you didn’t face any hiccups in life.

The way we deal with those situations, how we decide to move forward, the help and advice we seek and the ability to reflect and create action plans to move forward are what make you a rounded person. Knowing what works for you in different situations will help you to present the best version of you possible.

As I stated earlier I work in a school. Some of you may be thinking how are you able to do that? Well I have developed a couple of techniques that are so stupidly simple that it’s almost rediculous. For example when I’m supporting the children on the playground I walk around more often to be able to see where specific children are. This is because my long distance is atroushous so I combat that easily enough.

Some children may like tipping chairs over or pulling hair. Due to the fact that I know these sorts of behaviour are likly to present themselves in oppotune moments I have learnt that it’s always best practice to be constantly vidual. However, this is due, in part because I know the student’s and how to help manage behaviour rather than any techniques I implement due to my visual impairment.

I love my job. Working with kids is what I want to do and I fully intend to make a career out of it. I myself want to go back to uni to study Occupational Therapy and hopefully specialize in pediatric work. From my own past expriences I have come to realize that I have to take the leading step in how I work and learn best. I have to work with others to come to the best possible solution to help me achieve the best possible outcome and move forward.

Basically what I am trying to say is that it’s important to know what you are required to do in your job or education setting, become familiar with the type of activities that you will be facing and carrying out on a daily basis and create your own techniques for coping and ask your employer or educator for appropriate accomadations as they are legally required to do so.

Don’t let society or yourself hold you back. You are not your visual impairment. You are an individual who wants their needs to be met and succeed in life. You just happen to have different challenges that you have to face so be the best version of you possible by going and getting what you deserve.
I hope you enjoyed this post. I decided to write this one because I don’t believe that young people with a disability are given enough empowerment from a young age. By accepting ourselves and the help and techniques that we can and should be using, we are able to make a positive contribution to society. We should never be made to feel like we are different and unable to access learning or work based on disability.

Some of this initative falls into our own hands. We cannot expect to be handed the world on a silver platter, nor can we become annoyed or frustrated if we simply and easily fall into steryotypes. Society won’t change if we don’t make a change ourselves. We have to work with others to teach and learn about how each individual works best. We have to prove that we are capable of achieveing the things we strive for and that we don’t want or have to conform to societies views on disability. We are individual people who deserve to be treated as just that, individual humans with rights.

Until next week my lovlies I hope you have a fabulous weekend (especially seeing as it’s a bank holiday, hurrah for an extra day to have a lie in). Lets hope the rain abaits a bit for the next three days. See you next Friday :).

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 :).