What Independence Means To Me

Happy New Year to you all. We’re nearly at the end of January now and many of you will be unsurprised to learn that since my OT assessment on the tenth of December 2019, nothing else has happened in regards to my Direct Payment request.

Since publishing my last post my PA had to leave her job due to health reasons. I mentioned this on the day of my assessment as the OT wanted to speak to the people involved in my care. Within two days 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! To say this response upset me is an understatement and I feel that this demonstates perfectly what is wrong with the current system. Instead of being offered support to find a replacement my need for the resources I already had were being questioned! To be fair my Social Worker is really trying to help and once I explained that I needed the money available to be able to employ replacements, not to mention HMRC, they 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? These 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 it’s toll. Independence for me means being able to live without the assistance of my parents, the dream is to be able to do everything for myself without outside help, not currently realistic or feesible. I know this as I attempted to live by myself with no care package apart from to assist me to shower. My plan was to get around the need for care 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. What it actually meant was that 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. My back also decided it wasn’t happy with what I was doing and 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 have permanently hurt my back and my neck struggling as I did but I’m glad I tried. Without doing that 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.

I still find the idea of needing someone with me restrictive and would rather do things myself. When going through care assessments I always find the process demeaning and I’d be interested to know if others feel the same or if I’m being overly negative. The OT who visited seemed convinced that she could teach me to transfer myself with no support, 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 take a reduction in care money rather than asking for more. 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 but somehow 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?

There are many concepts that have been developed to increase the independence of ‘disabled’ people. Most 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

Starting with the positives of the video, 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 disabled people who use a wheelchair face. However 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 and when I roll my head sometimes end up on one side and my legs in another direction entirely! Ok, so I’m nitpicking and personal care isn’t really addressed in these types of things but if the chair was made, how would the owner get up, go to the bathroom and get ready for the day? A feature of the chair is obviously it lays flat for easy transfers but how are seated transfers catered for?

Hoists are great pieces of technology and mean that people can be transferred safely but even portable hoists aren’t very portable and certainly not designed for the user to use independently. If a person is hoisted then when they are away from the hoist and or the people who operate it they are suddenly stuck. I hope to help create a solution that is portable and can be used by the user. The problem with this of course is that very rarely does one size fit all. 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, abeit in a very wobbly way and chairs that can 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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