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Thursday, 3 March 2011

What is it like to live with Disability, Pain and the Expectation of employment in the mainstream world?

I have a lot of experience of pain which is as a direct result of my disability and regularly feel that people just don't understand, so feel I am qualified to share my opinion on this. I have been a wheelchair user all my life and my body to put it politely has taken a battering and is a mess. This has meant that as I get older I have suffered with more pain, especially with regards to my back going into spasm. I perhaps haven't looked after my body but have I had a choice? Not really, if I chose not to do something due to the risk of hurting myself I wouldn't do anything. This is not a life worth living! So I make the only choice possible, which is to put myself at risk on a daily basis to live as normal as possible.

Expectations of other people puts pressure on me to do things that you know could potentially harm you. Since I have been driving I have had to get my wheelchair in my car on my own and as I can't stand at all it means I have to drag my wheelchair over me to place it in the passenger side, this video on you-tube gives you a slight insight into the difficulties of getting in and out of the car just to go out when you are a disabled person People have always helped me with my wheelchair if they are around, but that cannot always be guaranteed if I want to be an independent active wheelchair user. The process of getting in and out of my car also takes time, so I always have to give myself plenty of time to get wherever I need to go, rather than just 'jump in my car and go' as so many other able  bodied people do without thinking about it. I think this is one of the hardest things about having a disability and that is seeing other people do things so much easier and they take it for granted.

These are all things that able bodied people don't have to think about and so this adds to the pressure to do things that you know potentially could hurt you more, just to be able to fit into society. Recently I looked into the option of a rooftop hoist, which hoists my wheelchair to reduce the strain that getting my wheelchair in and out of the car provides. This option sounds like a good idea I hear you say, so this is why I am going to explain why they aren't as great as they sound. Firstly they would slow the process of getting in the car and going out even more, that is if I decided to get it fitted in the first place. Before having it fitted I would have to make some other choices. The wheelchair that I have at present would not be suitable for the hoist and so I would need to change it to a folding wheelchair. For an active wheelchair user this is not at all practical as  they are much harder to push because power is lost due to the movement of the frame. The piece of equipment is also very expensive, because it is specialised and the companies that sell it know some disabled people have no choice about the purchase. I would get some financial assistance with this but would still be expected to find quite a bit of the money, which on part-time low pay is not the easiest option. So as you can imagine I chose to stay with a lightweight wheelchair. I have managed to get a really lightweight wheelchair which has helped, but I still had to find some of the money.

I received some support from Access to Work and Wheelchair Services. But that is another issue altogether, both sets of funding are at risk of government cuts set by the current Tory led government. If these cuts are put in place, this will just marginalise disabled people further in society. Making it even harder to be part of a society that they have a right to be part of. Just because my legs don't work why should I have a lower standing in society than someone who is able bodied.

I mentioned expectations of employment in the title of the blog, what I mean by this is partially what I have talked about already but also, my employer has always known me to be able to get to work on my own, in my car and so it is now expected that this is possible and don't see why it isn't sometimes. But as I said earlier, my back has took a battering and so this now means that I get more back pain which does stop me from doing some things because it is just too painful. For a time, before I got my newest wheelchair, people at work were very helpful (although not before I was in tears about it) and would help me in and out of the car to save my back. The situation shouldn't have necessarily got to this point as DDA states 'reasonable adjustment' and if helping me means I can go to work more because I am in less pain then surely this is 'reasonable adjustment?'.

But now because I have a lighter wheelchair that is meant to save my back from as much pain, I receive less help again. I don't expect special treatment and so I have allowed it to go back to this, but there is the worry that even though I have a lighter wheelchair that I may still have problems with my back as was shown yesterday when my back went into spasm, although it wasn't one of the worst spasms I have had it still caused me problems throughout the day but I still went to work because that's what was expected of me. There have been times when I have decided I can't go to work because of the pain, but I always feel guilty about this, because I feel I am letting people down. I also feel that the pain I get is not understood which is understandable I suppose if they haven't experienced this kind of pain.

Sometimes, the expectations of work come before "reasonable adjustments" and so make it harder for people to go to work and be part of society. The many cuts that the government are planning to make including DLA and Access to Work to name a few are going to make it harder for people to go out. The harder it is the less likely it is. Will we become the hidden, forgotten society?

Disability living allowance cuts could confine disabled to homes, say charities. Read this recent report in the guardian that shows the extent of damage these cuts will provide-


  1. thank you for your moving share will pass it on Thank you XXX

  2. Thank you. I enjoy writing these blog posts for different reasons. It helps me to make sense of the world and I hope that it will help some people see they are not alone. I want to raise awareness to make the world a better place for future disabled people.

  3. I too am a wheelchair user, I'm 21 years old and have cerebral palsy. I have this sort of thing ahead of me but I don't really feel like I can cope with adapting and making do for the rest of my life. I struggle with depression a lot and although I admire you for what you've achieved, I don't really feel that I can do the same. Nobody really understands my pain, I can't watch everyone around me flourish and take everyday things for granted while I plod along. I've thought about ending it all but my family and friends would never understand and probably resent me for it but to me, I have no other option because all I see in front of me is a life of misery and hardship. I hate it too much to live with it, I know this really hasn't been a helpful comment but I was just wondering if there was any advice you could give me? Have you ever felt a similar way? I've been on anti-depressants on and off for about 6 years as well as going through counselling and visiting psychiatrists - I don't mean to unload on you, but I know you'll know how it feels. It helps to know that I'm not alone and thank you for raising awareness - it's what the world needs.

  4. belief in yourself and have a positive thought, everything is possible in life, i am also a disable but my disabilities has nothing to disturb my life ok get up and face the world

  5. Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
    Ultra Lightweight Wheelchairs

    Keep Posting:)

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