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

Books in 2024

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Hello all,

It is that time again where I tell you about all the books I read in the last year. I listened to six books. In 2023 I listened to seven books. So really I didn’t do to bad in comparison.

I do wish I had listened to more books though. We’ll see how we get on in 2025… 2025!

Cher
By: Cher

I saw this book advertised in a shop and had to download it on my Amazon subscription. The book is absolutely amazing. Cher talks so openly about everything and there is so much that made me laugh and made me feel quite sad. If you love Cher then you need to listen to this book. It is part one of two and I cannot wait for part two.
This is the last book I read last year I got through it very quickly. I think it took less than two weeks. I just couldn’t stop listening to it.

Sonny Boy
By: Al Pacino

When I was in London I saw this book advertised on the tube and I added it straight to my collection. Much like Cher’s Book it made laugh and cry.
I loved that he read the book it was a brilliant listen. I think I listened to it very quickly. Most people I think don’t realise how much effort actors and singers etc have to put into their craft. Al Pacino really lays out all of the things he had to do to make his dream a reality. 


The Third Gilmore Girl
By: Kelly Bishop

I listened to this book because I am a fan of Gilmore Girls. I absolutely love Kellys character Emily. This book as with the others made me laugh and cry. I think I loved it so much because she was so determined to get what she wanted and wouldn’t let anyone tell her no.

The Twat Files
By: Dawn French

I love Dawn French. I love anything French and Saunders. What was great about this book was that she was saying everyone makes mistakes and makes a fool of themselves. Thats just human.

Berserker!
By: Adrian Edmondson

His book was one I saw advertised and had to add to my list to read. I enjoyed his book because he talks a lot about the Comic Strip and how a lot of the people involved had a massive part to play in a lot of the comedy I have listed too. He only ever talked about himself and never delved into his personal relationship or marriage with Jennifer Saunders which is wonderful because it shows his respect for her and their marriage. Plus I have read her book it was quite difficult at times.
I found the parts where he wrote about his partnership and friendship with Rik Mayall to be a difficult listen because of what happened. You can tell how much he cared for him.
Plus he’s from Yorkshire, which is grand.

Making It So
By: Patrick Stewart

Patrick Stewart is a great Yorkshireman which is enough reason to buy the book. What I loved was his dedication to theatre. He has played so many great roles which I got to listen to as part of his book. He truly is a national treasure. I just loved listening to his book. Listening to the parts where he talks about growing up in Yorkshire and how someone saw something in him which helped him to push himself to do more and really work on his dream was wonderful.

I really do enjoy audiobooks, especially when the person who is reading it is the person who wrote it.
I do however wish I could access physical books. I miss sitting down with a physical book and just reading. With a nice cup of tea.

But we have audiobooks so I can use those. I can listen to them anytime I want. Its good to listen to them while you’re doing other things.

What books have you listened to this last year? 
I am on Threads @VisuallyImpairedPip

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. 

Books in 2023

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Hello all,

So far this year I have read seven books. You might be thinking, that’s not a lot! But last year I read 9. I will be on track to read more than the year before.

Reading is one of my favourite things to do. I enjoy it because you can always learn something new.

I am continuing with learning about Autism, but I am also listening to books about Self Care. Which is really important especially when you are trying to get better at it.

The other books are ones I found about people I like or topics I find interesting. Have a read and let me know what you think.

1. The Big Bang Theory

By: Jessica Radloff
On Audible

Summary: ‘The definitive, behind-the-scenes look at the most popular sitcom of the last decade, The Big Bang Theory, packed with all-new, exclusive interviews with the producers and entire cast.’

I love the Big Bang Theory and saw this book was avail be to pre order. It was a great listen. The show itself was a wonderful thing because it made science more mainstream. One of the things the book talks about is Sheldon and how he’s one of the special kids, but never actually saying he is Neurodivergent.

I always liked Big Bang Theory and I always felt like Amy could have been Neurodivergent too. I related to her in that she was always struggling to get social cues, not to the same extent as Sheldon, but I think that’s because as a girl she would have learnt to mask.

2. Self Compassion

By: Kristin Neff
On Audible

Summary: ‘Kristin Neff, PhD is a professor in human development whose 10 years of research forms the basis of her timely and highly listenable book. Self Compassion offers a powerful solution for combating the current malaise of depression, anxiety and self criticism that comes with living in a pressured and competitive culture.’

This book has helped me to put things into practice. We can often forget how important Self Compassion is and this book is a great way of looking at even the little things we can do to make a big difference. Like how we talk to ourselves when we do something wrong. 

3. My Autistic Fight Song

By: Rosie Weldon
On Audible

Summary: ‘My Autistic Fight Song is a memoir that follows Rosie Weldon’s journey from a college drop-out as she tries to achieve her dream of being a qualified accountant. With the odds stacked against her and the stakes high, she refuses to give up on her dream.’

This is a book I was waiting for and ordered it as soon as I could. I loved it. As an Autistic Woman who also went to uni and was undiagnosed at the time I found this book to be very relatable.

The thing Rosie does not shy away from is when she discusses her struggles with Mental Health. It was a very moving part of the book and the way she handles the conversation is very delicate.

4. Have I Told You This Already?

By: Lauren Graham
On Audible

Summary: ‘From the beloved star of Gilmore Girls and the New York Times bestselling author of Talking as Fast as I Can comes a candid, insightful, and wildly entertaining essay collection about her years in show business, featuring stories that range from the sublime to the ridiculous.’

I just love Gilmore Girls. I can’t believe how long ago it was now. Lauren Grahams narrating this and in her chatty voice is wonderful. I wish we could meet and have a coffee.

5. Untypical

By: Pete Wharmby
On Audible

Summary: ‘It’s time to remake the world – the ground-breaking book on what steps we should all be taking for the autistic people in our lives.

The modern world is built for neurotypicals: needless noise, bright flashing lights, small talk, phone calls, unspoken assumptions and unwritten rules – it can be a nightmarish dystopia for the autistic population. In Untypical, Pete Wharmby lays bare the experience of being ‘different’, explaining with wit and warmth just how exhausting it is to fit in to a world not designed for you.’

This book was great, it really made me stop and think, why is the world so hard for me…. thats why…
It is books like these which make you stop and say ‘I need to be kinder to myself because I am in a world not built for me.’

Discussing things like small talk to an Autistic Person to a Neurotypical is always amusing to me. Small talk is there to fill a void and pass some time, but if I have all the info I need, why do I participate in it? How is the weather today? What you having for tea? When he discuses small talk in this book it made me chuckle and agree.

6. A Life on Our Planet

By: David Attenborough
On Audible

Summary: ‘See the world. Then make it better.

I am 94. I’ve had an extraordinary life. It’s only now that I appreciate how extraordinary. 

As a young man, I felt I was out there in the wild, experiencing the untouched natural world – but it was an illusion. The tragedy of our time has been happening all around us, barely noticeable from day to day – the loss of our planet’s wild places, its biodiversity.’

For a start it is David Attenborough and it is him narrating so that’s basically a major win.
This book was very powerful. We have been told time and time again we must do something to slow down climate change. This book explains how we are all connected and that everything has an affect on something else. That we must work together to make changes now. 

7. Spectrum Women

By: Barb Cook – editor, Dr Michelle Garnett – editor, Lisa Morgan
On Audible

Summary- ‘Barb Cook and 14 other autistic women describe life from a female autistic perspective, and present empowering, helpful and supportive insights from their personal experience for fellow autistic women. Michelle Garnett’s comments validate and expand the experiences described from a clinician’s perspective, and provide extensive recommendations.’

This book is the latest one I have read and it was brilliant. Coming from so many different women talking about their experiences. It covers many different aspects of life that there is a part of this book for every occasion.

I loved the part about self care as I think this is something we don’t focus on enough. If we don’t make time for self care our executive function can go out the window. So as the book suggests, schedule some time in to do the things you love.

I hope you have enjoyed my list and I would urge you to read these books I have mentioned, especially if you are Autistic yourself.

Have a great day doing what you’re doing and if you have any book recommendations for me please leave a link below and lets share.

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