Tag Archives: CVI

CVI

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Hello all, 

A few weeks ago we went to a conference specifically for one of my conditions. CVI- Cerebral Visual Impairment. While it does have the term Visual in the title it is important to note that your brain is the part which interoperates what you see. 

The best way I can explain it to people is imagine you’re looking at some writing in a language you don’t understand. You can see the writing but you can’t understand it. 
That’s the best way for me to describe CVI. 

It can be quite confusing and scary at times, for example if I’m crossing a road I may think it is clear, start to cross then a car ‘appears’. 

I think it is difficult for people to comprehend this and that’s why it’s difficult for people with CVI to feel like people get our condition. There is no way to show people how we see the world exactly as we do. 

Things can just magically appear because we can’t always interpret what we’re looking at. The brain struggles with this process. 
But this conference was wonderful because you’re in a room full of people who get it. They’re all there to learn something and create a community for CVI. It was great hearing people who have CVI explain similar things to what I have experienced. 

It was also great because those with CVI were explaining things from their perspectives. 

One of the things which is hard to fix is the ability to reduce visual stress. This is probably because the world is so busy and there is always something which is trying to catch your attention. Whether it’s a loud advert, or people rushing around going about their day. This creates a lot of anxiety which makes it more difficult for me to process what is going on. 

And no- don’t ask if new glasses will help. They will not magically allow my brain to suddenly interpret what is going on around me.

I do wear sunglasses a majority of the time when out and about because light hurts my eyes.

Here is a link to the CVI society. They are wonderful and a place to find a community for those of us with CVI. I would recommend checking them out and using their resources. CVI can be very difficult to explain, so being able to connect with people who have CVI or their allies is really important.

We had a great day meeting some amazing people who were sharing their stories and information around CVI. I had never met anyone else with CVI before so it was brilliant.

Have a great day! 

White Cane Awareness Day

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Hello all,

Hope you are well. Some of you maybe aware that October 15th is White Cane Awareness Day. If you are aware then hurray for you. If you are not aware then well, you will be soon.

What is a white cane and who uses them?

A white cane is a mobility aid which empowers a Disabled person to have independence. This does not automatically mean that they can travel alone instantly. It takes a lot of work.

There are multiple forms of white cane. There is a symbol cane, which is held by the Visually Impaired Person to indicate that they are Visually Impaired and may need more time and space, or might require assistance.

The other cane is a long cane. This cane is used for the same reasons as above, but the person using it is using it to navigate their surroundings. It enables them to gain tactile feedback.

You may have seen some canes come with red and white stripes. These indicate the user is Deaf Blind.

I used to use a symbol cane but now I use a long cane. I find it works better for me as I have little to know peripheral vision. As well as many other things.

A red cane handle in the foreground. Behind is the ocean with some rocks.


Do I need my cane even if I am with someone?

Yes. My cane is something I use even if I am with someone. It allows me to let people know I need space and additional time. As well as it helping me to navigate my surroundings.

Why do we need long cane awareness day?
 
We need it because of the amount of people who chose to ignore us. There are people who will ignore our cane and step over it. They will push in front us on trains and rush to the disabled seating. They will then giggle about their ignorance. FYI. Not all long can users are completely Blind. We have limited vision.

The other day I was getting off the train and someone was getting on the train and chose to step right in front of me. I am not moving. I have had it before where people will refuse to move. Why? If you think you’re being clever…you’re not. Please refer back to those who think it is ok to rush to the Disabled seating and giggle.

We need White Cane Awareness days because of peoples lack of knowledge and more importantly peoples lack of acceptance.

You may have the gift of sight. Which is wonderful for you. Some of us do not. If people had to spend even half a day in the shoes of a Visually Impaired or Blind person they would soon change their attitude. This is also not the same as wearing a blind fold for a short activity as it does not accurately represent our day to day struggles.

Our canes give us mobility. They help us to navigate the world in a safer manner. It allows those around us to ask if we need help. I often hear people ask ‘I don’t know if I should ask if you need help?’ I always respond with ‘I always appreciate when people ask because I might not be in a position to ask for help. It is always better to ask than to ignore. I appreciate it’. This way you are acknowledging the persons Disability without taking away their independence.

Please just be mindful of white canes, or any mobility aid for that matter.

Have a great day.  

You can find me on Threads @ViusallyImapiredPip

Motion sensor

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Hello all,

As the evenings and mornings are getting darker I thought it would be a good idea for me to buy one of those motion sensor lights.

They will actually come in handy all year round.

I bought this one from the RNIB, click here. It is motion activated, it can double up as a rechargeable torch and it can also be left on all the time if the user prefers. I don’t think we will use that setting though.

The first one I bought I put at the bottom of the steps. It turns on when I reach the bottom step which is ok. It also turns on when you’re about 4 feet away in the other direction.

It is quite bright which I normally dislike. However because it turns off after a few moments and only lights up the floor area that is OK.

I then decided to buy one for the kitchen to make it easier to find one of the light switches.

They have been in use for a few weeks now I am really glad I bought them. They make it a lot easier and safer to navigate when it is dark.

One of the best things about it is it automatically turns on if you have a power cut. Which is very useful. If you are visually impaired I would recommend buying something like this. Along side a few battery powered torches which you can place around your home. It is much safer than a candle.

No I am not being paid for this post. I just really liked my purchases.

Let me know what other safety tips you have for navigating in the dark.

Thank you for reading,

Philippa B.

Street Clutter

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Hello all,  

I know it has been a while. I have been thinking about what to write. I have decided to write about street clutter. 

As a visually impaired person street clutter is a major hazard. My white cain does allow me to feel for obstacles in my path which I do not see. However this doesn’t mean I can instantly find my way safely.  This image above is showing an example of barricades which have been set up to stop people using a crossing. One of the barriers was a grey colour, this did not contrast well with the grey paving behind it. This meant that I couldn’t really tell it was there and had to stand and look at it for a few minutes before moving forwards.

Barriers and cones blocking a crossing. One of the barriers is stuck out into the pathway.


The next day I went back as it is on a usual route and the barricade was in a much more suitable position. 

Another example of street clutter which is not safe is when road signs are left on tactile paving. Such as the one below. Tactile paving needs to be left clear because it allows those using a cain to navigate crossings safely by telling us what kind of crossing we are at. 

Street clutter for anyone is tricky and when there are road works I understand it is a lot more difficult to try accommodate everyone. However just street clutter in general should be to a minimum to make sure everyone has the chance to feel safe. 

When there is a lot going on it creates a lot more visual stress. Also as visually impaired people if we come across items in our path it is difficult to navigate safely when we are on our own. This would be if we needed to step out onto the road and a car is coming. 

Street clutter can affect anyone, but it is more dangerous for those of us who are disabled. Imagine if you are a wheelchair user and you have to go out into the road because there is something on the pavement blocking your path. There might not be a dropped curb for you to use. This makes it impossible to get around. 

If street clutter is managed more affectively, such as A boards for advertising, and are tucked in so we can get have enough space then that makes it easier. If there are road works happening then it is important to update a website, such as the council so that people can check before they travel. But this then leads us onto other problems such as websites are not always accessible. But this is a blog for another time. 

All we ask is that business, councils just be more considerate around how they ensure the safety of all path and road users. We want to be able to travel as independently as possible and we can’t if there barriers in our way. 

Thank you for reading, 

Philippa. 

Disability History Month

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Lets talk irony.

Hello all,

16th November marked the start of Disability History Month. Something which you may not know about. Well, now you do.

Disabled people have often been shoved to one side and ignored by society as we are not always deemed worthy. It was only in the 1990’s that Disabled People in the UK had their rights protected in law. Then in 2010 we had the Equality Act of 2010.

Ensuring Disabled people have the rights they need to be able to live their lives as fully and as freely as non Disabled People.

Lets look at what happened in the news lately, the Government wants to ensure all those who are on benefits work for their benefits. Correct me if I am wrong, but if a Disabled person is claiming out of work benefits, it is because they can not work.

I am a Disabled person who receives benefits, but I am in work. Those of us in our community who cannot work deserve a quality of life. Just because they cannot work does not mean they should be punished.

I acknowledge that befit fraud is a thing and I know that because of this small amount of people committing benefit fraud, leads to a generalisation of those who are claiming benefits.

However I am writing to defend the voices of those who are genuine and who will suffer as a direct response to these new laws.

But people can work from home now some of you may say. Yes that is an option. However, what if the employer turned around 6 months into the job and changes the terms of your contract? Saying you have to be in the office x amount of days a week. You can not make it into the office. You lose your job.

What about the lack of inclusion within society as a whole that means Disabled people are often left out? For example lack of accessible transport to get to work. Disabled people may not be able to be in work due to a variety of factors. Why is it down to the government to police a Disabled persons life?

Essentially the point of my post is that Disabled people on benefits may not all be out of work. They maybe using those benefits to work. They might not be able to work a full time job. This could be due to physical pain or mental health issues. But they are working.

What about Disabled people who do not have jobs? Well, guess what? Their health is none of your concern. If they cannot work it is between them and their Doctor. They do not have to explain themselves to you and that is OK.

Stop blaming Disabled people. Disabled people have a right to life, something which we have fought long and hard for and we are protected by the Equality Act.

Oh yes, I mentioned Irony… There was lovely post yesterday from UK Parliament celebrating Disability History Month. It is too funny, you can’t make it up.

Lets celebrate Disabled People’s history….and push these laws through from the current Government who are actively trying to kill Disabled people.

Anyway, stand up for Disabled People, we deserve a right to life.

Thank you for reading,

Philippa.

Disabled People have feelings too

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Hello all,

As you may have seen this week in the news there has been a lot of negativity around Disabled People, more so than normal.

From articles about the government wanting to get people off of sickness payments and back into work, to articles about the government cutting funding for Disabled Children in schools.

As a disabled person all this negativity in the news is very difficult to see. It makes me feel like people think of Disabled people as a drain on society, that we don’t have value and that the government is pushing even more so to make life more difficult than it already is.

We have value, we deserve support and we do not deserve all this vile hatred being directed at us. This government, for far too long, has demonised Disabled People and acted as though we are sponges, that we leach off of society.

We do no such thing. We want to live a life like everyone else. Just because we are Disabled does not make us any less than those around us.

We have feelings, we have dreams, we have wants and needs. To see the news attacking Disabled People is appalling.

We are being attacked because we are seen as an easy target, people think we get all this money thrown at us because we’re Disabled. This is far form the truth.

Have you ever looked to see how much a wheelchair costs? Do you know the cost of having to pay for a taxi everyday because you are exhausted and in pain from being at work all day? Yes, you read that correctly- work. Get another job I here you cry? I like my job and I am good at it. How much do you think it cost to invest in making adaptations to your own home to make it accessible, because surprise surprise our homes are not built with accessibility in mind?

The world is not built for us, as I write this I am on my day off and my whole right side hurts. This is because I have Scoliois. So no matter what job I have I will always be in pain. I have a great physio who helps me to manage my pain. This Physio is not an NHS one. The NHS does not offer sport massages as a way to manage pain. I pay to see my physio through my benefits. He helps reduce the pain I am in on a daily basis. This is on top of me doing my physio exercises.

Some Disabled People can’t work and that’s none of your business. We shouldn’t have to justify ourselves to you. For those of us who do work, that does not mean we are frauds. We all have our challenges, but that does not make us any less than a non Disabled Person. We are people too.

Thank you,
Philippa B. 

CVI

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Hello all,

Today I thought I would write about Cerebral Visual Impairment (CVI) as I have not written about this in a while.

I have mentioned previously CVI is the way in which my brain and my eyes don’t always communicate with one another. This means I can be looking at something but not recognise what I am looking at. I could be walking straight towards someone and not understand I am about to crash into them.

The CVI society describes it as ‘Cerebral Visual Impairment (commonly referred to as CVI) is a form of visual impairment caused by the brain not being able to process information from the eyes passing along the visual pathways in the brain. It is the commonest cause of visual impairment in children in the developed world.’ CVI Society, 2023.

Another issue is that I can’t visualise in my head what people or places look like. This makes it exceptionally difficult if I need to go somewhere new. I cannot go somewhere new independently. For me to learn a new route I have to do it a number of times. Even then I will still struggle.

A good way to think about an area of CVI, for me anyway, is to think of it as though you have gaps in your memory. It is just blank. Nothing there. I don’t know if this is a feature of CVI, but it is something which I experience.  

These elements make life quite daunting and very challenging. However there are ways around things. As I say, doing new routes multiple times. When you go out and are with someone try break down descriptions of that person. For example, what colour jacket are they wearing?

Tiredness absolutely has an impact on my vision, as I am sure it does for all of us. But for me when my eyes are tired I kind of go into auto pilot. This is where my cain is important. Because you are putting your safety  in the hands of tactile thinking.

My left hand holding out my long cain in front of me. Ahead of me is the sea on the beach.


The other day I went to get into the taxi, but I didn’t realise until I was about to open the door that someone was already in it. This is where it is very dangerous because you don’t always see things, sometimes until the last minute.

CVI is only one of the conditions I have. Please check out CVI Society for more info.

Thank you reading and checking in. I hope my musings have been of interest. 

Navigating Visual Stress by using colours

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Hello all,

The weather is most definitely on the turn. I do enjoy autumn. Currently sat with a nice cup of decaf tea. It’s after 2pm after all.

As a visually impaired person something I try to do is get things that are important in different colours. These colours tend to be bright so I can spot them. For example my purse is red, my yearly planner is red and my AirPods case is red. But you can see what the problem is here… everything is red. This means when I got my new phone and had to pick a case colour I opted for orange. I don’t have anything else orange.

These differences in colour are very helpful. Brighter colours enable me to spot objects and associate objects with colours. So if I am looking for something important I can find the colour. However due to the CVI this does not always help. My brain doesn’t always interpret what I am looking at. It can’t even think of colours at times because everything is overwhelming. Therefore I may just pick something up to see what it is if needs be.

CVI is something I have written about before and when I am tired it gets worse. This is because my brain cannot handle too much information at once. So by breaking things down through describing what I am looking for things can become more accessible.

Being Visually Impaired is exhausting constantly navigating a world where there is too much visual stress is overwhelming. So by breaking it down into colours or what shapes things are can make it easier.

What tips do you have to decrease your visual stress?

Thank you for reading and have a great day.
Philippa B.

A red purse and a red AirPods case.
Red Puurde and Red AirPods Case

Things you should not do.

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Hello all,

How are we all doing today?

Normally I do not go out alone as I struggle to get to new places independently. Getting to work I do alone as it is a familiar route.

When getting on and off trains it can be quite difficult for a few different reasons, one of which is when the platform and trains are busy.

It can be very helpful when someone asks me if I need help. My preferred way of people asking is if they say ‘hello’ rather than touching my arm to get my attention. This is just because I don’t like people in my personal space.

If I say yes to you your help then please let me take your arm and the guide me onto the train. Then help me to find a seat. Once we have found one I will say thank you and that I am happy for your help.

People will ask me if it is OK to ask a Disabled person if they need help. My response is always, please ask if you are unsure. The reason I say this is because it is always nice to be asked and if we do not need help we will politely say no.

Things I do not appreciate as a White Cane user are people assuming I have no site at all and using this to think it is ok to push past me.

This week in one train journey the following happened:

The train pulled up and I was about to get on when someone got on in front of me. Then another person decided to the same. The second person did so as my cane was helping me navigate the train step. My cane caught in between his feet and he could have fallen over or I could have misjudged the gap and hurt myself. This is all because people are arrogant and want to get on first.

The train is not leaving any quicker because you got on first.

Then getting off the train I stood waiting to go through the doors from the carriage into the exit. My cain was stuck out and I was ready to move through the door. Then someone stepped round the side of me and pushed through the door before me. These doors are quite narrow. My cain got stuck between their feet as they continued to walk off the train. Once again this could have ended up in injury to myself or them.

If an injury were to occur, it would not be my fault. I have a cain for a reason, if you chose to ignore it and you fall over it is not my fault at all. You may think that’s a bit harsh, but it is not. My eyes don’t work well, which is why I have the cain, your eyes work, so please use them.

Please be respectful of Disabled people, well everyone really. Personally I think if you were to ask if someone needs help it is OK to do so. As long as it is coming from a good place then it is all good.

Thank you for reading.

CVI

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Hello again,

Thought I would drop in. I was wondering what to write about and then I decided. My horrendous eyesight.

So the other day I was helping to put stuff away after shopping and the front door had been left open while we bring stuff in from the car. I heard a noise which sounded like a bell. I turned around and looked towards the door. There was something there, I couldn’t make out what it was. So I was startled. The mystery thing then moved. My eyes refocussed and I realised it was a cat.

The cat was black and white and our carpet is a dark blue, almost black. This is what made the cat more difficult to see.

One of my eye conditions is Cerebral Visual Impairment. My brain and my eyes do not always communicate with one another. Which leads to instances like the above where I can be looking directly at something but my brain just can’t understand what it is at all.

This can be very dangerous when crossing roads.

When I realised it was a cat I saw it turn around and move back outside. I went to close the door. We do not have a cat so this is why it was startling because it was out of the ordinary and clearly my head had no idea was to do with the information.

The same thing happened again this morning. I was putting on a fleece and a small moth was on the sleeve, I did not realise and then it moved onto my hand. I flapped my hand and it wouldn’t move. So I flicked the moth off and it disappeared.

It is very difficult when you can’t see but when you have CVI its all confusing because you are looking but your brain is just not doing what it should be with the information it is receiving from your eyes. This is very exhausting.

Please follow the link to the CVI Society to learn more https://cvisociety.org.uk

I am off to enjoy a nice cup of tea and watch some TV. Enjoy the rest of your afternoon.

Thank you,
Philippa B.