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.
Hello, inclusivelivingconcepts readers. Yesterday was International Inclusion Day For People with Disabilities. Did you all have a great day?
Today has been the same as many others for me, although disability-related content has increased. Generally, the awareness of the need for inclusion and its benefits is growing. Understanding breaks down barriers disabled people experience, e.g. accessing facilities and work. However, despite this, society is headed in the right direction.
Inclusive Dance World Vision Festival
On Tuesday, December 1st 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 organisers illustrated how to be inclusive and have fun.
The Inclusive Dance World Vision festival happens every year. Amazing dancers travel to Moscow to compete. Due to COVID-19, the event was livestreamed rather than in person. Everyone participated through video submissions, which shows how, with adjustments, events can be accessible.
Inclusion in dance
We will reveal our competition entry at our Freewheelin’ Christmas show on December 18th to show it would spoil the surprise. Two years ago, we competed for the first time. See the video below.
Inclusion for everyone
Access and acceptance are increasing as the disability community raises awareness. No matter what disability, race, or religion people have, we all should be included. The barriers I face as a disabled person are caused mainly 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!
Related posts:
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Changing Places Awareness Day 2020 Government legislation to increase the number of Changing Places toilets: What they are and why they are important....
Independence with Disability Independence, my struggle for the correct assistance. The way Social Services is structured creates barriers for independent living!...
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!...
Independence means choice and control. It means access to the support that is needed to live. According to the Cambridge dictionary independence is: the state of wanting or being able to do things for yourself and make your own decisions without help or influence from other people. I’m not able to physically manage without help from another person but I can still make all my decisons. To be independent I need people there to support me.
Fighting for independence
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 inclusivelivingconcepts 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
Independence to me 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 flexibility in my life. In my determination, I pushed myself too far.
Pushing my limits
By 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 had 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!
While living alone, I was exhausted by the time I was out of bed in the morning! 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 recently 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, I’d buy her a box of chocolates and happily live my life.
Why do people look and see more ability than is there? Do they see ability or do they just see a care budget they have been told to cut?! 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 as I cannot function alone.
Disability equipment concepts to increase independence
There are many concepts and products that have been developed to increase the independence of ‘disabled’ people. Go into any disability shop or website 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
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?
Related posts:
Cerebral Palsy My experiences living with a disability and being a wheelchair user. The physical barriers I come across and the attitudes I encounter....
Access 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!...
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, as 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 move my body as much as possible.
Me with an umbrella attachmentMy dog sunbathing in the garden
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