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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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.

What Independence Means To Me

Happy New Year to you all.

Still fighting for independence – Nothing’s changed

The OT assessment in December 2019 has changed nothing! Since publishing my last post my PA had to leave her job due to health reasons. Two days later my Social Worker emailed me to say the Direct Payments Team were enquiring whether my payments should be suspended as I no longer have any carers! This response upset me and demonstrates perfectly what is wrong with the current system. Instead of being offered support to find a PA and therefore continue my independence, my needs were being questioned! I explained that I needed the money available to be able to employ replacements, not to mention to pay HMRC. Thankfully, after a few more emails back and forth Social Services decided things could be left as they are.

Do I expect too much in thinking that that should’ve been obvious without me pointing it out?

Direct Payment budgets are hard-won and everyone I know would gladly give up the money for care in exchange for not actually needing it in the first place.

This struggle is what inspired me to start this blog as I know I’m not the only one. I’ve been fighting for my independence for the last ten years and the fight is wearing thin and taking its toll!

Independence

Being independent means being able to live without the assistance of my parents. The dream of being able to do everything without outside help is not realistic or feasible. My plan was to get around the need for care assistants by installing ceiling track hoists all over my flat and hoisting myself everywhere. A good plan, in theory, brought on by my determination to have choice and control. In my determination, I pushed myself too far.

Pushing my limits

I have permanently hurt my back and my neck struggling as I did but I’m glad I tried. Without trying I would never have discovered my limits, even if those limits have been increased by my actions. I’m not advocating that people push themselves to the limit but for me, at the time, it was the right choice.

Exhausted without the correct support!

Without the correct support, I was exhausted by the time I was out of bed in the morning and even if I had the energy to go out I could only leave my flat for a couple of hours as my toilet was the only one I could use without help. By the time I moved back in with my parents, fourteen months later, I could barely sit up in my wheelchair and had to undergo over six months of physiotherapy to get me somewhere close to my normal functionality.

I still find the idea of needing someone with me to assist restrictive and would rather do things myself. When going through care assessments I always find the process demeaning.

Lazy not disabled

The OT who visited seemed convinced that she could teach me to transfer independently given enough time. Trying to keep calm, I commented that if she could do that then I’d buy her a box of chocolates and happily live my life. Why do people look and see more ability than is there? I had enough motivation growing up to become self-sufficient if it were possible. People think I’ve just missed a trick, that I actually can do things, I just don’t know-how. Am I alone in this? Stating I’m more able just delays the evitable which may save money in the short term but it may cost more longterm if I and my parents get ill!

Upset figure

Disability equipment concepts to increase independence

There are many concepts and products that have been developed to increase the independence of ‘disabled’ people. Go onto any disability shop and you will see countless aids designed for increasing independence that range from button hooks to bum wipers!

Wheelchairs focus on lack of leg and feet functionality but assume the rest works as it should. A good example is the video below that’s been appearing on Facebook for a number of years.

Video of a Wheelchair Concept

Thinking positively, it’s great that people are thinking about access and recognise that barriers exist. The height of things, travelling and steps are very real obstacles that wheelchair users face daily.

Can you spot the first problem with this concept?

…How many of you go to bed fully dressed and ready for the day?

…How many of you can roll, either at all or whilst keeping your body in a perfectly straight line?

I don’t go to bed with my clothes on! When I roll over my head sometimes ends up on one side and my legs in another direction entirely! Never symmetrical!

Ok, so I’m nitpicking and personal care isn’t really addressed in these types of concepts but, if the chair was made, how would the owner get up, go to the bathroom and get ready for the day? A unique selling point for this product is that it lays flat for easy transfers but how are seated transfers catered for? While some practicalities have been thought about others have been ignored.

Questions figure

Current equipment

Hoists, (the current go-to for moving from A to B,) are great pieces of technology and mean that people can be transferred safely if they can’t move. However, even portable hoists aren’t very portable and certainly not designed for the user to use independently. Individuals who rely on a hoist are stuck if there isn’t one available.

I hope to help create a solution that is portable and can be operated solely by the user.

I’m nowhere near creating anything yet but I have ideas and I’m hoping that people reading this will want to get involved and bounce ideas around. Every wheelchair started off as a concept and we now have chairs that can climb stairs, albeit in a very wobbly way! Wheelchairs can now stand people up so why not a chair that can transfer someone from A to B?

These are my ideas of independence, what are yours?

Update: Nine Months on…

You don’t have to be a rocket scientist to work out that my first post was written in March and it is now December! I didn’t have a baby but life did get in the way so this is my way overdue update!

Naidex update

My original plan was to update this blog in time to write up my impressions of Naidex. Naidex is one of, if not the biggest disability show of the year. It showcases products, services, advice and a healthy dose of inspiration for disabled people. The main reason I haven’t updated is that I had to learn how to fix WordPress before I could use it. I also requested an increase in my Direct Payments from Social Services. Many of you know how relaxing that is! The photo below is of myself and Lee Rigby after his latest show in Birmingham, just one of the events I’ve been to this year.

Photo of Me and Lee Rigby after his show in Solihull

Equipment updated and dumb becomes smart

I contacted Remap to help me adapt my standing chair so that I could transfer into it more easily. If you can’t find a product that meets your needs then there is help out there. Remap will adapt what you already have or in some circumstances, create a new solution for you. Also, on the subject of access, I had smart lighting and heating installed along with a Gerberit wash and dry toilet in my flat. These things will help me be more comfortable and independent in my own home.

Cars and Wheelchairs

This year was also the year that my Motability car lease was up so I was kept busy researching car models that would fit me and my life in it for the next three years. I eventually chose a Fiat Doblo, passenger upfront conversion, a significant update on my previous car!

I now have two working power chairs, a month ago I didn’t have any as my privately brought, Powerchair, decided it needed repairing. Receiving my new TDX SP2 wheelchair from Birmingham Wheelchair Services means I now have a backup. In my experience support and equipment are like buses in that you wait for ages hoping for an appointment and or a piece of equipment and then everything happens at once! I’m not complaining, it feels great to know I now have a backup chair should things go pear-shaped. I’d love to hear about your own experiences.

Theatre fun

I visit my local theatre, Birmingham Hippodrome, at least twice a month. I love going to the theatre, it’s accessible and fun. Look out for more posts about my theatre adventures 🙂 I’ve seen a lot of productions in the past nine months including Kinky Boots and Hamilton.

So…

As you see it’s been a busy time. I’m planning on posting an update regularly from now on. I have my OT assessment on the 10th of December in connection with my Direct Payment budget request. Wish me luck!

Reviews

In this section, I will post reviews about the equipment I’ve used/currently use, venues I’ve visited, day trips, shows I’ve been to and holidays. I hope you find them interesting and helpful. The reviews on this website are my opinion only and based on how useful I find the equipment.

Reviews can help promote independence

Independence is important to me therefore I always aim to choose products that enhance my quality of life. This usually means that it is not a standard product as things have to be adapted to suit me. This is known as an inclusive design. Reading product reviews and recommendations helps me choose which products to buy and gives me ideas for making life easier.

What I look for when choosing products to enhance my life

The main thing I have to look for is the height of products. It’s difficult to be sure of my height as I cannot stand straight but I’m approximately 4ft 8 inches. This lack of height coupled with how Cerebral Palsy affects my muscles means that products need to be really low. Therefore hardly any standard products are of use as they are all too tall! This is why I take a step with me when I’m away from home but this isn’t practical for daily life.

The other thing I look for in disability aids is portability. This is rare as disability equipment tends to be quite bulky. I often find that non-disability products, repurposed, work best. Read my article for some ideas.

Reviews of places I’ve been to

Reviews of places I’ve seen or stayed at will be largely based on my own access needs but I will include other information if known. If you have a specific question you would like answered or would like me to review please contact me.

Disability

In this category. I will write about my experiences, sharing what living with the disability known as Cerebral Palsy is like for me.

What is Cerebral Palsy?

Cerebral Palsy is a neurological condition where parts of the brain don’t develop properly. It can be caused by infection or abnormal brain development. In my case, I was born three months early so the part of my brain that controls movement never developed properly. The reason for my premature birth was never discovered.

How does your disability affect you?

My disability affects my arms and legs which means I have poor dexterity and I cannot stand or walk unaided. My need for equipment to assist me in life is a must as is my need for care support. I have to access services to get this assistance. As a result, my opinions have become well-formed over the years!

I rely on my wheelchair to move around and grab bars to transfer. In order to be able to transfer all of my equipment needs to be at the correct height and in the right place. Because of this, I have a wet room with grab bars surrounding the toilet, a shower chair, a slide sheet to assist me to transfer in and out of my shower chair, a custom made manual wheelchair and a profiling bed.

Without the above products, which I will review, I would be reliant on a hoist, many people with a disability do! While there is nothing wrong with this, hoists are large and therefore take up space. It is also healthier for me to use my muscles and to move my body as much as possible. The reviews category and the disability category will cross over. Therefore posts written under reviews will cover a specific place, event or piece of equipment. This disability section is where I will write about everything else and hope to have discussions with my readers along the way.

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