Category Archives: Disability In General

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

Autism Arrgh!!!

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Hello all,

How are you?

Today I thought I’d write about a terrifying topic. One which will make you slam your laptop closed or through your tablet to the group, or your phone out the window. Yes….we’ve all heard of it…we’ve all heard stories….or perhaps you have experienced it yourself…. Or you know someone who’s experienced it…. I’m talking about Autism!!! Argh!!!

I don’t mean to alarm you… but it could well be that you have been near an Autistic person and did not know it. They may not have known it. They could well have sat next to you at work. Spoken to you to ask for directions…. Ordered a coffee in front of you at the coffee shop…. Maybe they’re in your home right now and you, or they don’t even know it!

Has anyone seen that Simpsons episode where Homer crashes into Bart’s room in the middle of the night and wakes him up saying ‘Bart I don’t mean to alarm you- but there maybe a buggy man or buggymen in the house!’.

How funny was that moment? And how ridiculous.

I am not likening Autistic people to the boogymen before you start to get even more scared.

Autistic people are everywhere. We show up in many different ways. We are not all the same and we all have different needs and support levels. We have the right to exist just like everyone else.

Some people are afraid that if their child is Autistic then how will they cope? Well that’s a fare enough question. The world is not built for us, Autistic people we are trying to fit into a world which is not designed for us, because we are not the majority. Some of us go for years without knowing we are Autistic. Then we find out and it can be quite overwhelming.

There is a lot of talk at the moment about trying to find the cause of Autism….and apparently they’ve found it…. Hmmmm….

I just want you to really consider that you shouldn’t be afraid of something just because you don’t understand it. You should try to understand Autistic peoples needs and wants and help us to fit in. Rather than trying to find the ‘reason’ we exist. Please don’t stop taking paracetamol. If you’re in pain please do something about it. Paracetamol is a way to manage pain.

My post today is just to point out Autistic people exist and yes we do have struggles. It is a spectrum. Please don’t think that Autism is all bad. It is a spectrum.

I am not one of those Autistics who thinks it is a super power… to me it really isn’t a super power at all. It’s just me.

Please don’t try and act as though Autistic people are a thing which needs to be gotten rid of. We have a right to exist. We just need to have the world be more supportive of us and our needs.

Thank you for reading.
Philippa. 

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. 

Scoliosis Awareness Month 2024

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Happy Scoliosis Awareness Month 

Scoliosis is a condition where the spine twists or curves to the side and it’s normally appears between the ages of 10 to 15 years. 

I was officially diagnosed as a teenager and was told my Scoliosis was mild. That I would not need to have any surgery and that if I did have the surgery it would only be down to cosmetics. A the time I decided not have the surgery as it was very daunting and I was also about 13 and would be coming up to do SATS/GCSE’s. 

One of the other reasons I did not have it done was due to all my other health conditions. Due to them not thinking it would get any worse we decided not to have it done. 

However, as I got older I found myself experiencing more and more pain. To the point at which it became a daily occurrence. 

I think had I had known that my Scoliosis would turn from mild to severe I would have opted to have the surgery. When you have a lot of health conditions it can be hard to navigate and manage them all. 

If you or someone you know has Scoliosis it is important to really consider having the surgery. It took me along time to decide against it. If you can, speak to people who have had it done. Speak to a surgeon and get as much information as you can. 

There are support groups available and you can find information online. Here is a link to the NHS page about Scoliosis. This page, Scoliosis Support and Research is all about general help and support, including pain management and finding a specialist. 

Now I manage my pain through a mixture of exercises, sport massages and physio. I also take painkillers. 

Living with scoliosis is hard and just because you have had the surgery does not mean all the pain disappears. You will always be living with some level of pain. 

Thank you, 

Philippa B. 

Negative Narratives

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Hello allo, 

The government has really ramped up it’s messages about Disabled people hasn’t it? 

There has been a lot of negative narratives and harmful stereotyping surrounding our community. But where to begin…? 

I think I’ll start with the blatant lack of understanding. The government does not seem to not understand the benefits system… They do not seem to understand that Personal Independence Payment or PIP, can claimed whether the person is in work or out of work. 

Furthermore it appears as though people do not fully understand the word ‘independence’. The payment exists to support Disabled people with extra costs of living with a Disability. 

You also do not automatically get the benefit because you are diagnosed with ADHD, or a Visual Impairment etc. 

It is a horrible process which a Disabled Person needs to go through. They ave to fill out a really long form where they tell the DWP how their Disability affects them. Once they have filled in this form, and provided medical evidence they then have to go to an assessment centre or have someone come to their home and ask them really invasive questions about their daily routine, washing habits, eating habits, whether or not they have job or friends… then the Disabled person is given a score and this score then adds up to how many points they get. This scoring system then decides if they are allowed any benefits which could help them to cover the extra costs which come with being disabled. 

More often than not the person will fail this assessment and will then have the option to appeal the decision. Again the decision could come back as a ‘no sorry your visually impaired and can’t see very well, you don’t ever leave the house alone on new or unfamiliar journeys, but you don’t qualify’. 

Then the Disabled Person has the option to essentially take the government to court. This is called a tribunal. You have to go and sit in front of a Judge and Doctors and make the case that you are Disabled and just want some help with the extra cost of living and keeping yourself alive. 

The tribunal process is separate to the DWP and it is independent. It does not have any government backed companies behind it, like ATOS trying to save the government money. 

A majority of the time Disabled People win these tribunals because the people at them are medical professionals and people who practice law. Therefore they understand the person in front of them and their needs and what they are entitled too. 

Do you honestly believe it is an easy process putting yourself through all of that? So many Disabled do not have the energy or support to go trough it. Quite often Disabled people might end up taking their own lives because they have run out of energy and money to support themselves because whilst they are fighting all of this they have no benefits because they have been stopped. 

Whilst I am writing this I am very much aware of the level of pain my right side is in due to my Scoliosis. 

Do not judge Disabled People. We have just as much as right to exist as anyone else. Our lives have meaning. 

If you are reading this and were not aware of how these new policies will impact Disabled People please contact your MP and express to them your concerns. Help Disabled People to be able to just have the right live. 

Thank you, 

Philippa B.

Bus Travel

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Hello all,

Lets talk accessible travel 

In the past I have written about floating bus stops and how they are not accessible to Disable people. If you want to read why then please follow this link. 

I wanted to write about the changes to bus travel in Bradford and how that is impacting me as a Visually Impaired Person. 

The bus station closed in January due to a collapse in an underground car park. The bus stops have since been relocated…well I don’t know where exactly as they are all dotted around the city centre. Some stops are outside the Broadway shopping centre, some are outside the town hall. I have no idea where my bus goes from or stops at. 

In this past week BBC has posted about this issue and the impact it is having on Disabled people.

The issue from my perspective as a Visually Impaired Neurodivergent person is that I cannot see where the bus stops are. If someone shows me this does not always eliminate the issue because what if the bus does not stop in the same place every time if it is busy? 

The other issue I will have is with it being busy when I set off work at rush hour what will happen if I can’t see where to join the queue to the bus? 

The other issue which I am concerned about is all the road works in Bradford at the moment. I am unsure of where I can cross the road safely. The main road in and out of town is due to close. Creating a pedestrianised area. With this road being closed I am unsure where I will get my taxi from outside the train station? I have asked the taxi drivers but they have not been informed of when the work will start on the new taxi terminus. 

There are a few issues which I have brought up here; 

The bus station is closed and has been relocated to multiple points across the city centre. 

I have no idea where my bus now runs from. 

There are road works across the city centre meaning I am not always sure where it is safe to cross. 

I have no idea when the taxi rank will move or what that relocation will look like. 

The council have not considered this impact on Disabled people. Whether we are just going into town or if we are using public transport to get to work. Our daily lives have been made even more inaccessible. This is before you even start on other issues which make travel inaccessible to us, like the floating bus stops. 

People need to consider the impact these unexpected changes have. If non Disabled people are finding it difficult to travel at the moment how are Disabled people meant to be coping? 

I will keep you updated with this ongoing issue. 

Happy Autism Acceptance Month. 

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Autism Acceptance month is here- although we should be accepting of Autism all year round. 

There will be a lot of things going out this month from various places that you will come across showing support for Autistic people. 

Be mindful of what you are consuming, either for yourself or for your business. Who has written the piece you are writing? Is this person Autistic? 

You cannot advocate for Autistic people unless you are willing to listen to Autistic people. This includes every Autistic person at every stage of life. 

I do not normally write about Autism on here, being Neurodivergent, yes, I write about that. But it can be difficult to write about being Autistic. I think this is because I went so long without realising I am Autistic. It is quite a journey you go on when you find out you’re Autistic. You have to learn to understand this part of yourself which has always been there. But now…you know it is there. 

Like you’ve found a whole new room in your house and you’re thinking ‘wow look at this space! What can I do with it? What is even in here?…’ 

It is a lot to unpack, literally unpack… How do I now navigate the world through this new lens?

Everyone is different, just like Autism itself, we are truly unique. No one Autistic persons profile is the same as another persons.

This is why at the beginning of this page I said to make sure what you are reading has been created with an Autistic persons input. Because, verbal or non verbal we all have something to share and say. 

During Autism Acceptance month remember that every one of us is different and unique in our abilities. We do not all view Autism as a super power. Some of us absolutely hate this phrase. Some of us love it and see their Autism as a gift. 

Be mindful of every Autistic persons perspective on Autism and if it doesn’t fit your narrative, that is OK. 

I’ll try write some more later this month. But for now that is all. 

Thank you, 

Philippa B. 

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.

United Kingdom and United Nations

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Hello all, 

Today is a momentous day for the Disabled Community in the United Kingdom. Our Government is having to answer to the United Nations on its treatment of Disabled People. 

Here are a few of the statistics from the Shadow Report to the UN:

  • ‘Three-quarters of Disabled workers are paid less than £15 an hour
  • 2,030 autistic people and people with learning difficulties incarcerate as inpatients
  • 1,500 crimes against patients over just 6 months caught on CCTV at Muckamore Abbey
  • 2000 deaths of patients in Essex mental health hospitals’

These are only a few of the points. Please follow this link to read more. Go to the bottom of the page and see the attachment Statistics from the UK DDPO’s Shadow Report to the UN. 

As a Disabled person I am very angry and very upset by the statistics in this report. The fact that our government does not seem to care about us is appalling. 

There are so many Disabled people in our society who are crying out for change and they are not being heard. The government keeps imposing sanctions on our community, they keep saying some Disabled People are fit to work when Doctors say otherwise. The government keeps reassessing Disabled people for benefits such as PIP and ignoring what their Doctors are saying about their health conditions. 

Disabled People are being driven to brink with some even taking their own lives because they are not getting the help they are entitled to. The media can portray us as lazy and liars. There are councils in the UK which are going broke and the services which are under threat are social care. These benefits assist Disabled People and their families in accessing the support they need to live their best lives. 

The way I see the portal of us in some of the Media is: Disabled people are taking up too much funding. We need to find a way to save money, lets cut back on services for Disabled people.

On the second page of the report you will see quotes talking about how the lack of council funding is having a detrimental impact on Disabled people. 

We have a right to live our best lives just like any other community, yet we seem to be shunned and blamed for society’s problems. This report has not received much attention the news at all. Which leads to Disabled people feeling like we are not worth thinking about. 

But we are. 

If you wish to know more about this, as it will probably not end up on the Six o’clock news then please follow Disability Rights UK. They are fighting for what Disabled People have a right to- basic human decency. 

Thank you, 

Philippa B.