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?

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