Access

Having the right access means being able to do something. If a building/activity or service doesn’t provide access to accomodate my needs I cannot use it. This is why accessibility and awareness of access is so important because without access people are excluded rather than included.

Happy New Lockdown

Happy New Lockdown! This was how my brother greeted me on his first day back at work after the Christmas Holidays and I found it so equally amusing and depressing that I just had to use it for this post. I hope everyone had the best Christmas they could and that New Year was a happy occasion for all my readers.

New years eve Fireworks
New Year’s Eve Fireworks

Recruitment

So new year same…activities! Literally! Last year I wrote about how I had lost a PA due to health problems and this year, thanks to COVID-19 I will be recruiting again. I have no idea what this will look like during lockdown but as my Mom helpfully pointed out, I have to find people to interview first! If I seem disillusioned and bitter about the process then, unfortunately, that’s an accurate picture. If any of you have any tips on how to make the recruiting process less stressful please let me know. I’m thinking of starting a support group for people who have lost carers/PA’s this year.

hands clasping
Hands clasping in support

My lockdown plan

On a more positive note, whilst I feel pretty negative about the recruitment process and Social Care in general, I’m determined that this year is the year that I get my ducks in a row! (Runaway Bride reference.) I’ve contacted The Disability Union, to assist me with getting my care package. I’ve signed up for the Lifebook Course to try and get a handle on how I want to actually live as all the assessments and stress has made it hard to see the wood for the trees. It may help or it may be new-age hype but I’m hoping for the latter. I’ll also be more active with Disability Horizons this year, writing and editing content. Check out my piece on free online courses available to stave off boredom and improve skills and knowledge during this latest lockdown.

I don’t know whether this new year equals a new me but I’m optimistic that it’s a year for change. What are your plans for this year? How are you feeling about the lockdown and the fact that there are now vaccines available?

I’d be interested to hear from you if you’ve had the COVID vaccine already. My disability whilst sometimes frustrating thankfully does not affect my health so I’m pretty far down on the list. A fact that I’m both incredibly grateful for and at the same time, I’m impatient for the world to be vaccinated so we can get back to whatever normal there is for us all. Who’s with me!?

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.

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.

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!

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

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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