Screenshot zoom Dance

International Inclusion Day For People with Disabilities

Yesterday was International Inclusion Day For People with Disabilities. I hope everyone has had a great day. Apart from more disability-related posts on social media today has been the same as many others for me. Awareness of the need for inclusion and its benefits is growing. This is a good thing for breaking down barriers that disabled people experience. Barriers still exist.

Inclusive Dance World Vision Festival

On Tuesday, 1st December 2020, my dance group were part of an inclusive dance festival in Moscow. Britain, along with many other countries celebrated the inclusivity of dance. The festival showed how everyone can be included and have fun. The Inclusive Dance World Vision festival apparently happens every year with amazing dancers travelling to Moscow to compete. Due to Covid-19, videos were submitted this year and the whole event was live-streamed on the day.

Inclusion in dance

I did plan on posting our competition entry but that will be revealed at our Freewheelin’ Christmas show on December 18th. Instead here is our first competition dance from a couple of years ago.

Inclusion for everyone

The disabled community continues to advise and raise awareness so access and acceptance will continue to increase. Everyone should be included no matter what their disability, race or religion. The barriers I face as a disabled person are mostly caused by society. Days like the International Day For People With Disabilities, Purple Tuesday and the Inclusive Dance World Vision festival show that attitudes towards disability are changing. Change is happening, this is proven in the thought that now goes into designing buildings so that they are inclusive.

Interview with Sam from PHB Hunters

Sam-Stickland

About Sam

Sam resides in North Wales and lives with a disability called Limb Girdle 2e Muscular Dystrophy which is a progressive condition, meaning her needs have increased/grown more complex over time. Sam is now forty and has been employing her own PA’s since she was twenty.

To begin with, she did this with the help of The Independent Living Fund, a benefit that unfortunately no longer exists. When the Independent Living Fund was scraped her local authority funded her entire care package, continuing to provide funds through her Direct Payment.

Agency workers

This worked well until Sam’s Social Worker persuaded her to use an agency to carry out her care rather than employ PA’s herself. At this point, her Social Worker applied for her to have half of her 24-hour care package funded by CHC. Sam agreed due to pressure, lack of support and her continued struggle to have a working contingency plan in place should any of her PA’s be unable to work. However, as soon as this decision was made Sam lost all autonomy and had very little or no say in how she lived her life.

Back with the Direct Payments Scheme

After a lot of battling with her local authority, Sam now employs PA’s once again through a Direct Payment, enabling her to live her life the way she wants to. She has this option as she is jointly funded by BOTH the local authority and CHC. This option is not available to those like Rhys who’s care isn’t jointly funded.

Sam campaigns with Rhys to try and ensure that all citizens in Wales, not least Rhys himself has the same freedom that she enjoys regardless of how they are funded. Below are the questions I sent to Sam after I saw their campaign on the BBC website and later on Facebook, Welsh PHB Hunters (Every human being has the right to be free.) The questions were sent before I knew she had won the right to have her Direct Payment again, which just goes to show you should always fight for your rights.

1. How long have you had your current care package?

I’d say from March, as I’ve been able to hire my own PAs since then, through a jointly funded package. However, I now believe I had a jointly funded package for almost 3 years, but I was falsely told by social services that it was CHC funded and therefore I was unable to use direct payments to employ my own staff. I now distrust my social worker and the people who are supposedly there to help us.

2. Are the agencies that are assisting you currently person-centred in your opinion? I.e. do they listen to you?

I no longer use a care agency, but can say that when I did they all said they were person-centred, but that only went so far, my views and opinions weren’t listened to when it really mattered, and they were just a business trying to fill their contract requirements any way they could.

3. Do you have any say in how your care calls are structured?

Yes, I have complete control now. I do the rotas, ok holiday, and I am in charge of all employment matters. Although I am checked in on a lot by nurses and social worker, (pre covid.)

4. What reason have you been given for the discrepancy between the assessment carried out by Social Services and the one by NHS? Needs are needs surely?

This is a Rhys question but from my perspective. My social care team really wanted the monies to come from health to save them money, they did not support me at all, and it was the health side that agreed my needs weren’t nursing as the social care team were trying to suggest.

5. How did you meet Rhys?

I was talking with Rhys and we can’t remember exactly how we found each other! It was through our fight for care and somehow we started chatting over Facebook. Since then we have spoken every day and started a long-distance romance!

6. In August, you wrote a letter to the Welsh government. Why now?

I think we both wrote letters prior to this, mine began in February, but at that time I was unaware of Rhys’ campaign. Once I connected with Rhys, I upped the ante and began to fight for PHBs as well as for the framework on legislature changes for joint funding to be made clearer. We have since written to charities, disabled organisations, magazines, MP’s and AM’s. Basically, anyone who will listen and support us.

7. Why do you think the push to use agencies is so high, are they more cost-effective? In England, agencies are more expensive than hiring your own PA’s/carers.

They generally are not cost-effective, but I believe that the social care team see them as an easy solution to them, less paperwork and less face to face work. They leave any issues to be dealt with by the agency involved, which leads to more problems for us. CHC funded care must currently use agencies in wales, hence the fight for PHBs, I believe this is to pass over any accountability to the agency instead of the NHS, and due to the work needed to change the current framework. It isn’t about what is best for us.

8. I read on your Facebook page that Direct Payments are unlawful when using CHC do you know why? Has anybody explained this?

It’s just not allowed because of the current CHC legislation. If you are jointly funded it is lawful, but it is not well known, as I found out during my fight. It needs to be clearer for users and the organisations involved.

9. How is a second lockdown affecting you?

The lockdown is hard, I miss seeing my family and my niece who’s grown so much since this all began. It obviously makes a long-distance relationship harder as we can’t travel as much. I had plans to travel this year! 😂 I worry about covid obviously but my PAs are all taking precautions to safeguard me and I appreciate that immensely. 2020 has been a hard year for everyone.

10. What does a typical day look like to you?

This is probably more Rhys, as I have a PA 24/7. I can get up at a time of my choosing; toilet, eat etc when I want. My only constraint is being in bed by midnight, as I have a sleeping night and PAs have to have 8 hrs sleep. Breaks for PAs are quite flexible depending on our plans for the day.

11. What do you do to relax?

Photoshop, and artwork. I can spend hours doing this on my computer, as it clears my mind. I love a bit of Netflix, music and days out with family or friends (pre covid). I try to study something new as often as I can, but Rhys’ campaign has kept me busy since August, so I’m only doing short courses at the moment.

12. Have you been given a reason why individual cases can’t be heard but group cases can?

I think this is just policy for the heads of departments, such as Vaughan Gething and Julie Morgan. We are encouraged to contact our local ministers.

13. Can you explain a bit more about Independent User Trusts? Why are they not suitable for your needs?

We have had difficulties with this ourselves so I’m just going to use what we currently have.

The Welsh government are proposing Independent Users Trusts (IUTs). An Independent User Trust is described ‘as a commitment on the part of trustees to manage an agreed sum of NHS money (or other resources) in a way that puts the individual at the heart of decision-making and gives them choice and control in their life’. Confused? I know I am? I ask is this clear? Because we have struggled to get a clearer definition so bear with us a little.

IUTs are in fact one of the ‘methods’ that an individual can now use to manage a personal health budget when a direct payment is not possible, AS IN WALES Right? But we are not being given the option of utilising the other methods, just an IUT.

So it’s our understanding:

• You have a team of 6 trustees almost like a syndicate.

• You get to choose who those 6 people are “how generous”.

• You speak to them, and they then speak to the NHS.

• They make a decision for you over how your care is provided, “bearing in mind it’s your care”.

• And they control the purse. “So we never, in fact, see the money ourselves.”

So, they are making us answer to a group of individuals, which granted, we can choose, but they decide and then purchase that care for us!

Is this not completely obscuring the idea of independence?

We are accountable adults, who have self-control over our own life’s, and finances! So why are they suggesting we are incapable of taking care of our care finances? The notion is completely condescending! The only thing that makes us different from everyone else, is a physical disability?

In our eyes, this means that IUTs fail to put individuals at the heart of the decision-making process, and instead take away our choice and our control over our care. Which surely we deserve? It merely mimics the same system currently in place, just given a new name… In line with the Social Model of Disability, the Welsh Government says it is committed to disabled people fulfilling their potential and achieving their ambitions and dreams, by removing barriers that get in the way of such ambitions. The Welsh governments current IUT plans are building these barriers up, rather than demolishing them, are they not?

We truly can’t understand how our own Welsh government thought it was okay, to put people who needed 24-hour care in a situation, where they don’t have any choice in who provides their care for them.

My thanks to Sam for answering my questions.

Having had several written conversations over social media with her, I have to say I completely agree that the proposed solution, Independent Users Trust’s, (IUT’s) does not give disabled people the freedom and autonomy that they are requesting. I can’t understand why a Direct Payment is available in one instance and not another! Judging from the campaign, I’m not the only one.

If you want to find out more visit the Welsh PHB Hunters Facebook page. They welcome any support, wherever you live and are currently looking for people who have experienced agency care to participate in an article they are writing. If you’re interested send them a message here.

Stuck In A Rut!

I’m stuck in a rut and have been struggling with what to write for nearly three weeks. In short, I’m having a self-esteem crisis and a bit of writer’s block. The ideas are there I just haven’t been able to do much with no mobility aids. I hate feeling useless and thankfully, with the return of my chair last week I’m beginning to climb out of the rut my mind has dug for itself. It has got me thinking though about the pressure that is put upon us to be productive. This post would’ve probably been more topical on World Mental Health Day but better late than never!

Being productive improves my mood

I’m the type of person that’s happiest when I have things to do and I feel useful and I think most people are the same. I’d love to know what you do when you’re stuck in a rut, bogged down by monotony, what helps you breakthrough and feel more like you?

Wheel out of that rut!

The first thing I did when I got my wheelchair back was head out for a short walk/wheel around the streets close to my house…I’ve just read that back, maybe around the neighbourhood sounds better? Anyway, it helped. Being able to be somewhere, by myself, helped and that’s what I’d been missing for three months, alone time.

I realise this post is a bit rambling but I just wanted to share my thoughts here. Writing is cathartic for me.

Rhys update

I have heard from Rhys Bowler but he’s been busy writing a speech for the Disability Cross-Party group of The Senedd, (Welsh Government.) The meeting was a week ago so I’m hoping to find out how it went soon. In the meantime, I have sent Rhys and his friend Sam my interview questions and Sam has very kindly shared her story with me. I’ll post it here next week, giving her a chance to see my write up first.

Blog post requests?

Please get in touch with what you would like to read from me. Any and all questions are welcome. I’d love to write a series about how I’m travelling the world but unfortunately, that’s just a pipe dream at the moment, as it is for many others in this COVID-19 environment.

The importance of choice and control

Firstly, thank you to all my readers and followers who have read my blog so far. I’m sorry there have been no new posts for a while but the last month or so, since I posted has been very hectic. This post is about the steps I’m taking to try and gain more choice and control in my life.

Staff equals choice

I mentioned in a previous post that my PA’s were starting soon and that I would share details with you lovely readers about my journey. My two PA’s started the week of the 17th August 2020, both seem lovely and employing them is my first step back to choice and control since COVID-19. What I didn’t count on is that the agency that I’d contracted back in March 2020 to assist me would also want to start on the 17th of August! I employed the agency while I was waiting for the paperwork on my PA’s to be processed and completed. The DBS checks took forever even before COVID-19!

People are like buses!

The week starting 17th August 2020, I had seven different people come to my house! Worse they were invited! I was putting myself through meeting these people in the hope that I’d gain freedom and control in the long run. There’s a well-known expression about buses and them all coming along at once. After eight months of having no formal care suddenly people were everywhere!

Buses

This is very positive in one way as it gets things moving. It was obvious to me at age eleven and is now even more obvious at thirty-four that I can’t rely on my family forever. They deserve choice and control as well! I’ve moved out of my family home three times in my life so far but it has never stuck permanently because of my lack of choice, control and the barriers in my way!

Money facilitates choice and control

I’m still fighting for a bigger direct payments budget. Having the money to pay people for what I actually need would go a long way to removing barriers and afford me more choice. Money does that for everyone, disabled or not. Money makes the world go round!

My petition for more money to meet my needs isn’t going anywhere. Just recently my social worker applied for the emergency COVID-19 fund as CHC, (Continuing Health Care,) isn’t currently assessing people. My social worker was told I’m not eligible and advised her to tell me to use a Shewee!

What is a Shewee?

A Shewee is a plastic device to enable women to pee standing up. Never fear lovely readers this isn’t going to become an in-depth account of my personal habits. Now I could do a whole separate post ranting about how if I could stand up I could probably transfer and not need the device in the first place! Let me know if you’re interested in reading that, but my current thinking is that I’ll bore you to death, so let me just say, in fairness, that some disabled people have apparently found it helpful.

I’ve tried it and many variations thereof and am unable to use them sadly. Not to mention that this device, if useful, would only solve one of the things I need assistance with. My Social worker has advised me to put in an official complaint and I’m still waiting for the payroll paperwork to be completed in order for my PA’s to be on my payroll and have payslips every month. This is despite the fact that they have now been working for me for almost three weeks! #DirectPaymentHeadache.

Inclusive access gives choice and control

In other, more exciting news. I’ve started writing for Access Rating as a content writer. The company is run by disabled people and they aim to improve disability access by offering businesses access audits and encouraging people to record the accessibility of the places they visit. They have created an app that enables anyone to rate venues based on how accessible they are. It’s an idea that’s been done before via review websites but this is the first app that I know of. The rating system is really easy and takes less than 30 seconds unless you really want to add detail.

I’m really excited to be working with them as it helps me influence greater change and choice for a more inclusive society. The app gives everyone the chance to have their say and is free to download. Check it out and rate your corner of the world. 🙂

Personal Health Budgets give choice and control

If you’ve checked out my Facebook page recently you’ll see that I shared a link to BBC news which tells the struggle of a man in Wales to be allowed to manage his care package through a Personal Health Budget. You can probably tell that I am not a big fan of the way Social Care is run but I was genuinely shocked to learn that Personal Health Budgets aren’t an option in Wales! They may be a headache but they do offer the most choice and control for a lot of people.

What is a Personal Health Budget?

A Personal Health Budget is different from what I currently receive as I receive Direct Payments through Social Services. As I’m asking for a bigger care package my Social Worker is trying to get me funding via CHC. If this happens my needs will be fully funded at least partially by the NHS. I could still receive my money as a Direct Payment. As things stand at the moment Rhys and others like him can’t. The NHS decides what he receives and who provides that. I’ve since reached out to Rhys and been given permission to send him some questions.

I’m curious as to how he manages in a system that, according to everything I’ve read, takes away most, if not all, of his choice and control and I’m hoping I can assist in some way. I may be in limbo in many ways but at least I can choose who assists me.

I’m so grateful for the choice and control that I do have and having that inspires me to improve things for us all. This keeps me going, especially as for the last month both my electric wheelchairs require repairs! My private Power Chair has an as yet undiagnosed technical fault and the wheelchair given me by wheelchair services has unsuitable footplates and armrests meaning I can’t leave the house in either one! I have two chairs and I only need one to be working. When I next post hopefully they will both be in working order. What was that about buses?

pig-laughter

Until next time.

My Suspected Coronavirus Experience

This took longer to write than I thought it would. The idea was proposed to me by Disability Horizons magazine, I hope people find it interesting. It was pointed out to me when I submitted this to the magazine that I never actually received a positive diagnosis of Coronavirus I believe that is what it was but because testing was not widely available then, I’ll never know for sure.

Contracting Coronavirus

I live with my parents and brother. Back in April, I believe we all caught Covid-19, but our experiences of being ill were different.

Thankfully, none of us had it seriously enough to need hospital attention, but the road to recovery has been slow, particularly for me.

I’m disabled and have cerebral palsy, but I don’t think this makes me no more vulnerable to the virus than an able-bodied person. I’m probably as fit as any other 34-year-old who doesn’t exercise regularly.

Having watched my brother and mother become ill first, I knew it was only a matter of time before I caught it as my parents are my main caregivers at the moment.

My brother and parents’ symptoms

My brother and dad had what can only be described as ‘typical’ symptoms of Coronavirus – a high temperature and cough. How they felt matched closely with what we were being told in the news, so we assume they had the virus.

At the time, tests weren’t even widely available for NHS staff, so there was little chance of us being able to get tested. I would like to get an anti-body test, once they become available, to be sure that’s what we had. But I’m pretty convinced as it is.

Coronavirus recovery time

The quickest to recover was my brother, who felt ill for about three weeks. Friends with family members who have had confirmed Coronavirus tests have said they experienced a horrible week, perhaps 10 days.

For me, it was two months from catching the virus before I started feeling close to normal again.

Back in April, the information available about how long we might all be ill suggested that we should’ve begun feeling normal towards the end of my second week.

But, as time went on, more details came out and the times seemed to vary. One article I read described someone having what he called prolonged Covid-19. They were ill for three months.

Pain

My first symptom of possible Coronavirus was pain. I assumed it would be sweating because there was so much talk of a high temperature.

It initially made me question whether I actually had the virus. But with my brother and dad having had what seemed so like Coronavirus surely it couldn’t have been anything else? 

I had what I can only assume was nerve pain. I say this because every muscle and joint in my body ached to the point where I couldn’t cope with sitting up as my hip joints were the worst. It was unbearable.

Pain killers didn’t touch it, but there would be random moments where suddenly all pain and discomfort would disappear, only to reappear again sometime later.

Temperature and cough

I didn’t really have a temperature, as has been talked about so much. I woke up sweating a few times in the night, but my temperature was stable.

I instead felt cold most of the time, and generally off-balance, which wasn’t fun. I also didn’t have any breathing difficulties or indeed a cough.

Confusion and rambling

Being confused and disorientated is not something I have experienced before, so this was new territory.

One second I would be convinced I had to do something, but the next I couldn’t remember what it was at all.

I tend to ramble anyway – why use one word when you can use 10?! But, apparently, there were times when I didn’t make much sense at all.

I was also aware that I wasn’t thinking as fast or as clearly as I normally do, right up until a few weeks ago. Thankfully, I now feel like myself again now.

Tiredness

Together with the other symptoms, I didn’t know what was going on half the time and, despite sleeping a lot, I was constantly exhausted.

I have so much sympathy for people who suffer from fatigue after experiencing what I did.

I’d be sitting or lying down, either watching TV or listening to an audiobook when my body and brain would suddenly want to sleep. Even worse, if I didn’t get my head down straight away, I would go dizzy and experience headaches.

The tiredness lasted the longest, about 15 weeks in total. Even when all the other symptoms had disappeared, I couldn’t actually concentrate to read or do anything without needing to go to bed soon after. I couldn’t look at my phone or laptop without getting an instant headache.

Lack of taste and smell

Not being able to taste or smell anything is now a recognised symptom of Coronavirus, but it wasn’t at the time my family was ill, so that threw another curveball.

For me, the virus caused the weirdest sensation. It wasn’t like when you have a cold and you can’t taste anything, or only taste the catarrh in your throat.

Everything tasted like dust. There was no texture to food either. Everything I put in my mouth could have been the same food.

I suppose at least it didn’t taste horrible, but trying to eat with no sensory feedback was hard. The lack of smell was easier to cope with as I’d experienced that before.

It was also weird when these senses suddenly came back. I was actually overwhelmed for the first two or three days afterwards as everything was suddenly different.

Nausea

This was the worst symptom. I suffer from nausea anyway, but it seems as though this virus had taken it to a new level.

As mentioned earlier, I had no breathing difficulties and I didn’t really have a cough. But I do believe that this virus, assuming it was Coronavirus, attacked my digestive system.

I felt like somebody had turned me inside out. If I didn’t eat, I felt ill, and if I eat more than a few mouthfuls, I was sick. It was a delicate balance that I’d mostly figured out by the beginning of week two.

The rest of my family stopped eating altogether for around two days and then felt better. My nausea lasted about six weeks.

I’ll probably never know if my theory is correct, but it was disconcerting to have an atypical experience when every day the news and NHS were discussing what to expect. My mum’s symptoms also echoed mine more closely too, so it wasn’t just me.

I hope reading this has been interesting and useful in some way. I’m so grateful that none of my family had to go into hospital.

With lockdown relaxing, I just hope people will be sensible so that everyone can get back to ‘normal’ and leave their homes without worrying about catching this awful virus.

I’ve been very lucky, but I never want to feel like that again. Stay safe everyone.

My next post will be about the importance of choice and control and how I’m still having to fight to achieve this! So much in fact that I’ve started a new Twitter hashtag, #DirectPaymentHeadache. If you or someone you know is having issues with the support you receive, DP or not, please get in touch. Together we can effect change for a more inclusive world. 🙂

Changing Places Awareness Day 2020

Today, 19/07/2020 is Changing Places Awareness Day in the UK and the government has announced that Changing Places toilets will be mandatory in big public buildings in England and that 37 motorway stations will have Changing Places toilets installed.

What are Changing Places toilets?

Changing Places toilets enable people who are hoisted or who cannot use standard disabled toilets to be able to relieve themselves in dignity and comfort with enough space for the equipment they need and also the people needed to assist them. Fitting a disabled person and the people assisting them into a bathroom with the door shut is a squeeze at best and impossible at worst. Changing places have plenty of space.

Changing Places Equipment explained

Changing Places Bathroom
A picture of a changing places bathroom with all the different components/adaptions labelled.

The hoist means that the facilities in this toilet can be used by people who otherwise can’t transfer. The height-adjustable bed provides a safe and clean surface for people who cannot use a toilet to lie down. The fact that it is height adjustable means the person/s assisting are not having to bend into awkward or painful positions to assist with toileting or changing the person they are with. There is even a shower so that an individual can get clean if needed, complete with a privacy screen. The floor is designed to be waterproof and easy to clean. This is a great step forward in inclusivity but it is not wholly inclusive.

I’m really pleased about the decisions made by the government today in regards to this as it means access and freedom to so many disabled people but I cannot use these toilets as there isn’t a static bar on a wall next to the toilet. Different adaptions suit different people and that is why it’s important to be conscious of inclusive design.

Why is the toilet in the middle of the floor?

With the toilet in the middle of the floor, there is plenty of room on either side of the toilet for a carer to be on each side of it. If someone is being hoisted two people can often be needed. This is also the reason there is plenty of space between all the equipment in the room. I’m not sure what the answer is to make Changing Places inclusive for all. My one idea is to make the grab bars on either side of the toilet longer. With assistance, I could then use the grab bar. I’ve yet to see any longer grab bars that fold up though. If they exist please let me know. Also, I would like to your experiences of Changing Places toilets and if you’ve found the shower in them useful?

Thank you to everyone who has voted in my poll so far, if you haven’t please consider voting now! It’s anonymous and will really help me make this blog inclusive.

My COVID-19 experience post is coming this week so keep your eyes or your inbox peeled by following me. Simply scroll down to the bottom of this post or click on the appropriate icon to the right. I’m now on Twitter!

Covid-19 and upcoming articles

Thank you to everyone who expressed concern for my health over the last few weeks. I am now fully recovered. Apart from your kind concern, I haven’t received any COVID-19 questions from any of you lovely readers yet but there has been plenty of interest in the actual article. It occurred to me that perhaps I’m overthinking things and I should just write about my experience but also that people may be concerned about anonymity. Please be assured that anything you ask me, only the question will be used. There is still time to get in touch if you’d like to. It also crossed my mind though that this blog may not be accessible to everyone. I’d be grateful if you would take a minute or two to vote on the accessibility of this blog. If it isn’t accessible tell me how to rectify the situation.

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Thanks for Voting!

As lockdown relaxes for some of us, I’m starting to put things in place for my new PA’s to start and will be writing about my journey as I go. I also have a couple more articles to write for Disability Horizons, a list of online courses which are still available to do from home and a money advice article. Keep your eyes peeled for those! I have a busy few months ahead. Stay safe everybody.

My COVID Experience

I’ve been asked by Disability Horizons to write about my experience of COVID-19. Rather than just write how I felt I think it would be of more interest and use to you, the readers, if I answered any questions that you might have about what it’s like to be ill with this virus. I’m really interested in what you would like to know and I’ll do my best to answer them. There are no silly questions so get asking.

Self-Isolation Activities

I’ve seen a few of these self-isolation posts pop up since I said I was going to post and while I’m not surprised by this, COVID-19 is after all the only topic of conversation at the moment. During my COVID-19 illness, I have to say audiobooks kept me sane as I didn’t have to focus on anything. I sincerely hope that non of my readers share my experience but being read to is a great way to pass the time, especially if you’re feeling under the weather or just fancy a lazy day. I hope you enjoy reading how I’m spending my isolation and I’d love to hear how you are filling your days during this crisis.

Colouring

I love colouring books and even before we officially isolated I used it as a way of gaining some me time. I’m unfortunately not arty and cannot draw to save my life. The beauty of colouring books is that the hard work is done for you.

Pigment app

I’ve recently discovered an app called Pigment which I now use on my iPad. It’s available for IOS and Android. You can finger tap, use a stylus to fill in an area or just set it so you can’t colour over the lines. Great if you have limited hand function. I find as much as I like pencils and paper, after 20 minutes my hands are really sore.

The app is free with in-app purchases which I recommend you leave alone. The app gives extra brushes or colours but is £7.99 per week! There are plenty of free pages without having to spend anything though. Pigment also lets you import pictures to colour in. There are other free colouring apps, Colorfy is a good example, (also available on Android) but this is my favourite. Check out a couple of my pictures below.

Organise Email

If you’re already a superbly organised individual then feel free to scroll down.

If you are looking for a way to be productive whilst in self-isolation then this is a good place to start. Having completed this task I can tell you it’s very satisfying.

Top tip:

It feels even less like work if you have music, the radio or your favourite audiobook on in the background.

The organisation process

My process for organising my account followed this pattern:

1) Open your email client or sign in using your web browser and click on your inbox

2) Have a piece of paper/your phone next to you before scrolling right to the bottom of your inbox.

3) Go through and read each message. Before moving to the next message decide if the email you are currently reading needs to be kept, filed away or left in your inbox. You have to take action before it can be moved.

If it’s an email from Amazon or similar, trying to persuade you to buy something you don’t want/need. Press the delete key! It can feel like a big accomplishment. If you’re like me, these kinds of emails have built up over the years! If however, it’s something you want to keep, think about a category folder that you could create for that email and write it down on your piece of paper. A few categories I use are Receipts, Social Services and Volunteering. Move onto the next email in your inbox when you have written a category down and leave the email in your inbox for the moment.

Screenshot Of Email Folders I've Created

4) Go through all your emails. You should now have deleted all useless ads etc. Your inbox will now contain emails that you need to take action with and emails that need to be filed. You will now also have a few categories jotted down.

Creating Folders

5) If you use an email client, I use Mail on a Mac, visit your email account via your web browser and create folders for all the categories that you noted down. I use Gmail. Folders are called labels in Gmail. To create a new folder you need to click on an email, find the label icon and type in a new label/folder name. After that click ‘create new.’ Do this for each of the categories you have written down.

Screenshot, How To Add Labels/Folders In Gmail

NB: Remember to untick the boxes unless you want to move the current email into your new folder.

6) Now you can go back to your inbox and go through it again. This time you can move each email into one of the categories you created. I had emails going back as far as 2016. It took me about two hours to do all of that. It did get boring but made life so much easier.

Organising my photos into folders in a similar way. I put all the photos from all my devices and memory cards onto my computer hard drive. I put my favourite music on in the background and went through them one by one.

Video Calling.

Video calls are a great way to stay in touch and can help keep feelings of isolation at bay. I haven’t done a lot of video calls as I find them exhausting at the moment. I really feel for people who haven’t got access to the internet at this present time. I’m mostly using Zoom, as I can have it running on my Mac and everyone can access it. Unlike Facetime, where an Apple device is needed. I’ve just started taking part in two regular quizzes via zoom which is entertaining. Fingers crossed I’ll feel well enough this Friday to take part in my Freewheelin’ dance class again. After over a month’s absence, I’m missing it.

Screenshot zoom Dance

Audiobooks

I use two audiobook services, Audible and RBDigital.

Audible is relatively well known and is owned by Amazon. I love the choice and control you have with this service. For £7.99 a month you get one credit on a recurring monthly subscription unless paused or cancelled. Find a book you like and listen to a sample. This is particularly useful if like me you find some narrators more enjoyable than others. Purchase the book with either a credit or by paying by credit card. Within twelve months you can exchange a book for another if you don’t like your choice.

When you first join you have access to a months trial which means you get your first book free. At the moment, I’m listening to Wicked by Gregory Maguire. The book is very different from the theatre production. 😉

Screenshot Of The Audible App On My Phone

Top Tip

When signing up for the free trial, choose the two book a month option. You will get two free books. If you love the service but £14.99 is too expensive, you can always downgrade to the one book a month subscription before the trial ends. If you cancel before the trial is up, won’t be charged and you’ll get to keep your books. Pausing membership is where you take a break for three months. You are still a member. Membership and billing restart after three months but for the paused period you are not charged and no more credits are added to your account. This is Great for when you have too many books to listen to.

RBDigital is the service Birmingham Libraries uses for it’s members to access audiobooks/magazines and now apparently also newspapers. In my experience it’s a lot more limited than Audible but it is a free service. A valid library card is required and set up is done through your main library webpage. Your city may not use this service, some use Overdrive. Below is a screenshot of Birmingham Libraries page explaining set up and the RBDigital app on my phone.

Screenshot of RBDigital app, displaying A Harry Potter Book

Ebooks

Reading is a solitary activity that takes me to different places and is the only way we can travel at the moment. Ever since I’ve owned E-Readers I’ve loved ebooks. They are so much easier to hold and I can read whilst I sit outside, great when the weather is nice and sunny.

Libby App

I use a Kindle Oasis and an app called Libby. Libby is the ebook app for my library and can be downloaded onto all android, and IOS tablets. Like the RBDigital app, listed above, a valid library card is required but set up can be done through the app itself. The app will ask you to select your local library and input your library card number. If you have an E-Reader that uses the Epub format rather than the Kindle/Mobi one, loans from Libby can be sent to your e-reader. The only drawback to my kindle is library books can’t be added to it.

I use Amazon to get most of my books, which is why I prefer the Kindle above other e-readers. Kindle Unlimited is currently offering a free trial to new customers. Project Gutenberg offers free out of copyright books to the public. I’ve also just discovered a website called Manybooks.net, which I’ll be exploring for new books soon.

Kindle

Writing

Last but definitely not least is writing. It helps me relax and get any and all ideas out of my head before I go to sleep at night. At least that’s the theory, it doesn’t quite work that well in practice. While I was ill I couldn’t write at all which is why this post has taken so long. I still find looking at my laptop screen tiring. I couldn’t wait to start writing again! I’m pleased to be getting back to some semblance of normality in these strange times.

Top tips for coping with isolation

Not being able to see friends and family is hard and it is very easy to let the situation affect your mental health. Many disabled people already know what isolation feels like as illness or circumstances have meant that they can’t go out.

Whether you are isolating because you are ill, shielding or just following lockdown rules here are my top tips for staying sane.

Pick activities that isolation rules don’t change

With the exception of reading, all of the activities I have listed are activities that are done by me when I’m alone. Ok if I wasn’t isolating I may colour in the same room as others or listen to music and books with headphones on but I don’t actually need and wouldn’t normally have anyone else engaging with me. This reduces the sense of weirdness that self-isolation can bring. I’m doing something by myself and I’m enjoying it. Focusing on this instead of the fact that I can’t visit friends is a positive frame of mind that will assist your mental well-being.

Reading can take you from isolation to anywhere in the world

Whatever form it takes for you, ebooks, physical books, audiobooks, can transport your mind away from your isolation to different countries, fantasy lanes or just make you think of something else. Using your imagination in this way is one of the best ways I have found to combat loneliness.

Keep in touch with friends and family

It doesn’t matter how you do it keep in touch. Phone calls, video calls, emails, letters postcards. Have contact with people. If you’re looking to meet people there are now various groups online to suit all sorts of interests. Dance, writing, knitting, crafting, photography are just a few ideas.

I hope you’ve enjoyed reading about how I’m spending my isolation. Get in touch and let me know what you’ve been doing to keep busy. If anyone has any podcast recommendations please let me know as I’m interested to know what all the hype is about but unsure where to start as there is so much choice!

Till next time stay safe and well.

Accessible Rooms: How To Make Them More Accessible

Due to a certain well-known virus, most of us aren’t going anywhere at the moment but I said I’d write this before the COVID-19 madness started and it occurred to me that the house arrest many are experiencing at the moment is a good opportunity to get organised for our next accessible getaway.

Questions to ask before you book your accessible accommodation.

I’ve found the best approach is to think about what would make your stay IMPOSSIBLE and then structure your questions around making sure the impossible can’t happen. The obvious one for a wheelchair user is steps. I always specify the exact thing I need or don’t need. Using the example of steps above the question I would ask is. Does your accommodation have any steps? The keyword here is any. If they say no, I follow up with, none once inside? The reason for this is I have then often been told that the entrance has no steps but that the bathroom is split level. People tend to think about entrances when you ask any access question.

Blue door
Blue Door Entrance

My Top 10 accessibility Questions:

1) Does your accommodation have any steps?

This is a deal-breaker for me unless there are lifts. Hotels often have alternative access but If I want to book a holiday cottage for example it has to be wheelchair accessible. Steps may not be a barrier for you. Your insurmountable barrier may be that you need your accommodation to have hearing loops etc. Personalise this top ten to your circumstances.

2) If there are steps are there lifts/ramps available to get to where I want to go?


I ask this because some people see in black and white and it might not occur to them that there are steps at the front but step-free access at another entrance. Finding this out means I may have more choice about where to stay.

3) What is the width of your doorways?


This question is one I don’t have to ask as I’m lucky enough that my biggest piece of equipment, (My PowerChair,) fits through standard doorways but it is a close thing sometimes! To be safe, measure your chair from widest point to widest point. Then you can say I need doorways to be no narrower than XYZ. Please note: if you have a piece of equipment bigger than a wheelchair, e.g a hoist, measure that instead. Bit obvious but still worth pointing out, you want the doorway/s to admit you and anything else you might need.

4) Is there an accessible bathroom with a wet room?

I need a wet room, as I can’t access a bath or any bathing setup that isn’t flat. Obviously, you could change this to whatever set up you prefer.

5) Are there grab bars next to the toilet, fixed to the wall?


Again this is very specific to me. I cannot transfer without static bars that are fixed to the wall. Fold up ones lift up as I stand, I’d be there all day! You might need fold up bars or no bars at all so that a side transfer is possible, or enough space around the toilet to use a hoist. If you’re able enough that a toilet is a toilet, then leave this out.

6) Is there a shower seat fixed to the wall?


A fixed shower seat is the set up I find most accessible as I find hired shower chairs an expense and they are often too high for me to transfer into. There are companies that will lend you equipment and many deliver to your accommodation, for a fee of course. You may be wondering why this question didn’t follow the wet room question. The reason is if there isn’t a wet room I can’t stay there, ditto if I can’t access a toilet. Given that, the specific’s of the shower are saved until I’ve ascertained the bathroom and toilet space are accessible.

7) How high is the bed?

My biggest issue isn’t that I use a wheelchair it’s my height together with my disability. I’m 4.8ft, just short enough to make an already challenging transfer that much more difficult! I, therefore, need a low bed. You may need a high bed to make it easier to get out of it in the morning. It’s also worth asking if there is space under the bed itself. If you travel with a hoist or hire one, the last thing you want to discover is that the hoist cannot get close enough to the bed!

8) Are the light switches near the bed?

If you’re like me you might need assistance in the night, sometimes however I just want to roll over and check the time without disturbing people. If the light switch isn’t reachable from the bed this isn’t possible. It may sound trivial but I’m no good at routing around in the dark!

9) Do you have adjoining rooms?


This question is more for hotel rooms and related to the fact that I need assistance. If this doesn’t apply leave it out but if I need anything at stupid o’clock my family or my PA’s have the luxury of coming straight to me and not having the honour of traipsing a public area in their PJ’s! If you are renting a property then this isn’t needed.

10) Can you email me photos of the property/room type that I’m looking at booking, please?

I will never go anywhere again without first seeing pictures of where I’m staying and the layout. Even after asking all these questions, things can be topsy turvy upon arrival. Even with the best will in the world people misunderstand and in some cases, give completely the wrong information!

Access gone wrong!

Prior to my stay in London, I asked everything I’ve outlined here and received satisfactory answers. Upon arrival, the shower seat was a portable seat that hung over a static grab bar and was VERY shallow. I eventually got my money back as I had one shower over three days which nearly ended with me and my PA on the floor as the seat wasn’t stable! I did on this occasion request pictures but they weren’t clear and I took a chance. Businesses should be happy to provide clear images of either where your staying or a comparable room/building. If they are not, find somewhere more helpful who will accommodate you.

Camera clipart
Clip Art of A Camera

Products to help make your accommodation more accessible

Having found somewhere accessible to visit and phoned the business to ask about access requirements, it’s quite likely that the place you want to stay isn’t perfect and not as straightforward as it would be if you were in your own home. Instead of not going anywhere and staying home, (sound familiar?) there are products out there designed to make accessible rooms more accessible to you.

Portable hoist

Everybody is unique and because we are all unique our version of accessible is different. What works for one person may not work for another. Some people cannot manage without a hoist to transfer from A to B. This doesn’t have to mean that travel is out of the question. If you are hoisted, chances are, to save space and for convenience, you have a ceiling track in your home. Unfortunately, this isn’t portable. There are however portable hoists available for purchase or hire. See the image below. If hiring a hoist, always check the dimensions with the company to be sure that it will fit through doorways.

Hoist
Picture Of A Portable Hoist

No hoist is small by any means but you can see that the one pictured above does fold and can be moved about. For the purposes of this blog post, all images are taken from mobility websites and I’m not endorsing any particular product just giving some idea of what’s available. If you use something that I haven’t included in this post. Please get in touch.

Patient transfer aids

If you don’t need a hoist but need some help transferring there are many disability aids available. You do need to be able to weight bear to use these.

Patient Turner
Patient Turner

A patient turner, like the picture above, is a device that assists you to transfer without putting a strain on the person assisting you. To use; stand on the disc with knees against the pads, holding onto the bar at the top. The bar can also be used to pull yourself up into a standing position and the patient turner can be wheeled short distances by your PA/carer. I’m not sure how portable they are in practice but the top bar can be unscrewed for transport on most models.

Patient turntable

Patient turntable
Turntable

The image above is of a patient turntable, a more portable device then the patient turner. The disc turns around, enabling an individual to be assisted from A to B without having to struggle to move feet and turn their body. To use; stand on the disc and, with the help of someone else, the movement to turn around is initiated, the disc turns. This is what I use to get from my wheelchair to bed. By positioning my wheelchair next to the bed, disc on the floor, under my feet, I can stand, (with the help of my PA.) The disc turns and my legs go from being in front of my wheelchair to in front of the bed or vice versa, a 90-degree turn has been achieved and all I have to do is stand, very portable.

Transfer/Bath Step

I use a bath step because it is very rare that furniture like beds and chairs are low enough for me to transfer onto. Steps like this are sturdy, non-slip and add height for those of us who need a bit of help in that department. I use it together with the turntable above. The step I use is made up of different blocks so that you can add or take away layers as required. It is very useful and in my case means I can stay in places where otherwise I would need a specialist bed that is height adjustable.

Transfer/Bath Step
Transfer/Bath Step

Funiture blocks

These blocks come in different heights and in rectangle, square or round shapes. They can be used to make furniture higher, either for transfers or so a hoist can be slid underneath, e.g a bed. Hotel staff, if asked, will position the feet for you but the bed, chair, etc will have to have feet of their own that can be encompassed by the blocks. Again it is something simple that turns the inaccessible accessible. Many are also stackable for storage.

Portable Ramps

Depending on what steps and access are available a portable ramp may be a good investment. These can be expensive, but if you’re patient some good bargains can be found online. I brought a 3ft ramp off eBay last year for £15. It lives in my car boot so I have it with me when I need it.

Picture Of A Portable Ramp
Picture Of A Portable Ramp

Grab bars

If grab bars have to be in a certain place to be accessible, suction grab bars can make the difference between not being able to stay somewhere and managing. They need to be fixed to the wall by someone with a lot of strength and having done so, weight should be put through the bar by someone who can cope if the bar falls off the wall. Only then should the person requiring the bar, start to use it. Prices start from under £10 to over £100. Some are better at sticking to walls than others. The ones I use are called Mobeli, expensive but worth it.

Grab bar
Grab Bar

Shower seats

If you need something to sit on whilst in the shower there are plenty of portable seat options, like the one below. However, you do need a degree of balance which I don’t possess. That’s why I always ask if a shower has a seat attached to the wall. This means I can lean back on the wall for balance and affix a portable grab bar next to me to hold onto. I use a wheeled shower chair at home but it’s definitely not portable. There are also stools, some of which can be folded. These take up less room in luggage but have no back.

Portable shower seat
Portable Shower Seat

I hope you have enjoyed reading this post and are inspired to begin planning your trips away, ready for when this crisis is over. For now, take care of yourselves. Stay home and stay safe!

Look out for my post: Things to keep you entertained while self-isolating

Can I afford to work?

Thank you for all the comments on my last post. It’s comforting and encouraging to know that I’m not the only one experiencing what I’m going through. The accessible rooms post is coming, keep a lookout! Somehow when I sat down to write it, this happened instead.

Smiley thumbs up
Smiley face, thumbs up!

Severe Disability Premium benefit – What is it?

Wanting to work I contacted a support service. They told me that I’m better off on benefits and that I should apply for the Severe Disability Premium benefit. This is an extra £66.95 a week on top of my other benefits if I qualify. This was the first time I’d heard of this benefit and the top-up would make life easier. An individual is only eligible if they already receive certain benefits usually income-related like Income Support Allowance together with a disability benefit like Personal Independence Payment.

confused
Woman with hands up, looking confused.

Is Severe Disability Premium benefit means-tested?

Yes, it is. I’m not entitled because I have savings of over £6,000 and I live with my parent’s who aren’t on any benefits. If I had savings less than £1500 I would’ve been sent a form to fill in that asks me to declare my income.

Am I too disabled to work?

Advised by my support service that because of my needs, working would probably impact negatively on my benefits. This means I could be expected to pay for the entirety of my care package which I can’t afford! My care package still hasn’t been agreed on and no progress has been made since December!

I want to pay for myself, I don’t want to be a burden on society. My plan was and still is, to work but how can I when society seems designed to have me sitting at home, wilting from boredom? I know people with care needs do work and have care packages that give them choice and freedom. What I can’t work out is how? I’m on a roundabout that has been going around the same issues continuously for five years! I’m just not getting anywhere!

Roundabout
Black and white roundabout.

Volunteering is monitored even if it is unpaid work

I’m helping to create an access map of the Jewellery Quarter in Birmingham. This will improve access to the many museums and heritage sites of this area. Currently, I’m just collecting information on the access that’s already available. We are encouraging museums to get involved in improving their access. consequently, these interesting places are accessible to more people. When I volunteer DWP have said I have to fill in a form whenever I start any work paid or unpaid.

Rainbow hands
Many rainbow hands forming a white circle.

I appreciate any thoughts/comments that you have. My post on accessible rooms will hopefully be up next week.

Should I continue writing about my life or just stick to my ideas and reviews? Let me know here.

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