A wheelchair equals freedom, choice and control. In my case if I’m not in bed then I’m in my wheelchair. They should be comfortable, practical and enhance abilities where at all possible.
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.
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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.
Support, Humanity and the Giving of Money
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!
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.
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?
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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.
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.
Smart Lightwave Double Socket
Smart Tado Thermostat
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!
Related posts:
Can I afford to work? Can I afford to work? I've been told I'd be financially better off relying on benefits! My care needs are a barrier, even with support!...
Interview with Sam from PHB Hunters Sam is campaigning for equality. Read my interview with her where she explains how Welsh disabled people have their choices taken away!...
Disability My experiences living with a disability and being a wheelchair user. The physical barriers I come across and the attitudes I encounter....
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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.
Update: Nine Months on… Learning to use WordPress, new car, smart home tech and days out. I update you on the past nine months of my life....
What Independence Means To Me Independence, my struggle for the correct assistance. The way Social Services is structured creates barriers for independent living!...
The importance of choice and control The importance of choice and control to be the masters of our own lives. I meet new people and become involved in an access initiative....
