Tag Archives: Disability

Disability History Month

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Hello all,

It is the start of Disability History Month here in the UK. The theme for this year is life and death. How fun.

It is interesting that this theme would be the topic when the government have been having conversations around Euthanasia. I’m not going to get into that here because it is a very difficult topic.

My point is this topic alongside the current conversations surrounding our benefits system seem to fit in with this theme of life and death.

When you then consider the long waiting lists within the NHS for services such as mental health support this years theme seems quite interesting.

I’m going to focus more on the life side of this years theme, lets focus on giving Disabled people a quality of life which enables us.

Disabled people have a right to exist. We have a right to life.

We should not be looking to go backwards in terms of Disabled peoples access needs. Just because someone is Disabled does not mean they are lesser than.

Disability is a group which anyone of us can join at any time. Often as people get older they will develop some form of Disability. We need to ensure all Disabled people have access to dignity at every stage of life. We, as a society, also need to start seeing mobility aids as items which empower us. Which give us independence.

One of the sections on the DHM website shows you the themes since 2010. I would urge you to go back and see what some of those themes were. I know I will be revisiting those themes to see the journey the movement has been on.

I think there is importance surrounding the topic of death, but I do not have the spoons to cover it. Just remember to respect everyones opinion on this topic and remember to ensure Disabled people are included in this conversation.

Everyone deserves respect, dignity and choice.

Thank you for reading.

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! 

Christmas

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Hello all,



It is coming up to Christmas time. Which means everything will be getting busier and there will be more going on around us. Which can be great but for those of us who are Visually Impaired or Blind it can be a bit more difficult.

There are lights going up and Christmas trees being decorated, shops are filling up with more of their Christmas stock. This can all feel quite festive. I do enjoy Christmas and giving presents to people. It is nice to get together with family and friends and to have a catch up.

What can be difficult is the Visual Clutter. At home we have everything where we normally put it so it’s not something new in a new spot.

I don’t really enjoy shopping as it’s busy, so we go when it’s not a weekend day. This makes it easier as there are less crowds. Shops will often have a move around of their stock at Christmas to utilise space. But when you go in and nothing is where it was before it’s quite disorientating.

This is another reason to go when it is not busy as you can take your time and not feel rushed. Top tip for the Visually impaired and Autistic shopper, go when it’s not busy so you are not feeling rushed.

Christmas can be great from a sensory perspective, that’s why it’s important to get it right for yourself as a Visually Impaired or Autistic Person. Take the time to not feel overwhelmed and to do it at your own pace.

Once all our decorations are up I’ll try make a post with you showing what it can look like if you have Nystagmus.

I find when shops have a lot out it can be very overwhelming. I find there’s too much stuff. I get it, it’s commercialisation, but sometimes there’s just too much going on.

Enjoy your Christmas season and all the merriment it can bring. If Christmas is hard for you, then make time for yourself and do what you need to get through. It can be hard this time of year.

Thank you for reading.


I’m on Threads @VisuallyImapiredPip

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

Period Underwear and Autism

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Hello all,

How are you?

It has been a while since my last blog on this topic so I thought I would revisit it.

A while ago I wrote a blog about period underwear and wanting to try them out. I was searching all over for recommendations and then as algorithms would have it I was pointed into the direction of Modibodi.

Modibidi are an Australian brand which emerged in 2013. They are also a B Corp. This is amazing because BCorps are companies which have been found to be doing good for the planet and for its residents.

Please check out more here.

I have been using Modibidi for a few years now and they have made a massive difference to my periods. My previous posts on Modibodi are here.

Even after using them for a good few years I am still very happy with my experience. I love how comfy they are, they don’t get bunched like pads can sometimes do. They are soft against your skin.

Three packets of cardboard packaging with the brand Modibodi. A pair green underwear, boys shorts style are underneath.
Modibodi

The best thing for me is the helpful change with routine. As you can wear a pair and not have to worry about going to change your pad during the day for fear of it leaking. If you’ve been there you know how horrible this is.

You can rinse them out at the end of everywhere and then put them to dry. Then you’re ready to wash them. This part at first feels a bit disgusting, but then let’s rember, it’s all natural. It’s only because it’s new it feels weird.

The level of comfort I felt on my period whilst wearing these instead of pads was wonderful. You can go about your day and not worry if you are near to a bathroom to change.

They come in different levels of absorbency so you can pick the one that is right for you.

As an Autsic I find all these things to be big wins.

Not having to adjust my day to consistently accommodate changing a pad.

Being able to be more comfortable.

Periods are hard enough just dealing with the pain. I often find my periods to be very heavy. I have found myself feeling exhausted, spending days in bed because I am so exhausted.

With period underwear it helps even a little bit to make a difference. It makes a big difference for me in the way of feeling a bit more confident when on my period.

I must stress, other brands are available. But Modibodi is the one for me.

And before you ask, no I am not being endorsed to write about Modibodi.

Thank you for reading.

Philippa B.

Cane Tip

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Hello all,

A while ago I decided to try new cane tip. It was the Path Finder 360 rolling ball tip.

I had seen it on social media and thought I’d try it. It looked interesting in that I would be able to move my cane in any direction I wanted. Rather than the normal side to side sweeping motion a lot of visually Impaired Cane Users use.

I was used to using the high mileage tip from Ambutech and I loved it. But a change was needed as it looked so good.

I got the tip and after a few days of using it I had to say it was not for me. I’m sorry, I know a lot of other people have used it and said it was great but it was not for me.

I realise one of the reasons was that if I am stepping off a train I put my cane down and then tap the floor to make sure it’s all good, then I step down. The problem the 360 cane was giving me was that I found it would just move in any direction when I touch it down. Making me feel uneasy, especially if I was by myself.

This same feeling applies to steps. When walking down stairs I want to just move my cane left to right. But with the 360 cane it would roll forwards. With my other cane tip I would need to angle it so that it would move forwards.

The other issue was that it was a hollow tip. I was unsure how long it would last as I’d only used it for a few days. So I can’t really pass comment on this one.

If anyone has tried this 360 tip please let me know.

If you wish to see the cane I’m referring to it is through RNIB.

Thank you for reading,

Philippa B.

Benefit Proposal Changes

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Hello all,

As you have probably seen in the news the previous government wanted to make changes to benefits such as Personal Independence Payment and Universal Credit.

Changing the benefits system would mean a huge challenge to some of the most vulnerable in society. Making claimants worse off.

The benefit changes which I am going to focus on are Personal Independence Payment. This is because as as a Disabled person this is something which I am more aware of.

I fully understand the Labour government has a deficit which it needs to fix. I fully support the idea of getting people who can work into work, if it is the right decision. But not all Disabled people can work. Not all areas of our society are accessible, which reduces Disabled peoples access to not only work, but life in general.

The fix cannot just be take benefits away and people will work. There are so many more layers to this.
Disabled people need access to specialist equipment, such as wheelchairs, hearing aids, Braille displays etc, which can cost a lot of money, they then ned to be able to access buildings which are not always accessible. The ‘Get Britain Working Again’ has so many different areas to it which need to be addressed it is not as simple as ‘heres a job go do it’. At least not for Disabled people.

The changes being proposed are things like replace money with vouchers. How long will it take to implement this? How many business are going to have to wade through filling in forms to replace a voucher given to them by a Disabled person just so they can exchange goods and services? Business will either stop serving Disabled people, making them even more marginalised, or the business will go out of business because they can’t keep going with lack of money while they wait for the vouchers to be exchanged back into cash. Meaning less services for Disabled people. Leading to more marginalisation.

Disabled people need better access to support and that is not going to come from putting more barriers in their way.

Follow stories of Disabled people online and you will see how unfair the system really is. Follow charities such as Scope (click here for Scope) and read about their campaigns to help Disabled to get the support they need. 

I am on Threads @VisuallyImpairedPip

I am in no way affiliated with Scope, I just think they do a great job.

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

Scoliosis and the cold

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Hello again,

The weather is getting colder which means my back is hurting more and more. It is not just my back which hurts with the cold, but my joints ache too.

I have to keep going for my sport massages. These are really helpful because it helps to reduce the tightness in my muscles. This means I can move around a bit easier and feel a little less pain. I then have to keep doing my physio exercises to help keep the muscles and joints as usable as possible.
However, this is just a continuous cycle of sport massages, physio exercises and pain relief.

Due to my curved spine I will always be in some level of pain. It is just about how I manage it. There is no full solution to Scoliosis, which is what the condition is called when you have a curved spine. Even if you have the surgery to correct your spine you can still have to deal with the pain.

Currently I have pain in my right shoulder and neck which then runs all the way down the right hand side of my body. I am trying to keep warm today as it is due to snow heavily later on. The temperature is currently 1.

I am not a fan of the cold due to the high levels of pain I have to put up with. I wish people could understand a little more about the constant pain people with Chronic pain have to deal with.

I am going to go do some other things and get on with my day. Stay warm and safe.

Thank you for reading,
Philippa. 

U.K. Government still silent

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Hello all.

About a week on from the UK being questioned by the UN on its approach to Human Rights for Disabled People and I have not seen or heard anything from this government.

As a Disabled person it does not shock me at all how I am feeling about this. I feel let down, angry and very sad.

I listened to about 20 minutes of the conversation as I was busy with something else before hand.

All I have heard this week is the continuous barrage of hatred towards Disabled People from this government. A new policy they wish to implement is having data from the NHS shared with DWP so that Disabled people can be ‘helped’ back into work.

From my point of view this will be exactly the same situation the government has had with Personal Independence Payments. By this I mean NHS resources will be wasted on getting Disabled people into work who absolutely cannot work. Doctors do not just sign people off sick for fun.

You’re probably wondering ‘why can’t they work?’ There might be a few reasons;

They might be chronically ill

Places of work might not have access to resources such as accessible technology to allow them to work (screen readers), wheelchair access, they might not be able to go into the office as frequently as the employer might like.

They might not be able to work a full time job or have the ability to do at home working if their accommodation is not suitable due to things such as not having an office space.

There are many reasons. The way I am looking at this issue is this- make society more accessible and then everyone can thrive.

Why is it that Disabled people are being made to feel as though we are the problem? When all we want is equal access to society like everyone else.

This government and the party it represents, has continuously blamed Disabled people.

Look at how councils are now blaming the rise in SEN spending and social care for their lack of money. However when these same councils have gone to the government and said we need more funding the government have told these councils no. No. Sorry, you’ll have to find some way of making ends meet.

Which is why you have Disabled people wanting to access care in their own homes to live independently, but who are loosing access to their care agencies because the agency wasn’t awarded any funding.

It is exhausting being disabled. I look forward to seeing the report from the UN. However I very much doubt the government will truly act on it.

Thank you for reading,

Philippa B.