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 a direct result of my disability. I regularly feel that people just don't understand, so 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 from more pain, especially regarding my back going into spasms. 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 to put myself at risk daily to live as normal as possible.

Expectations of other people put pressure on me to do things that I know could potentially harm you. Since I have been driving, I have had to get my wheelchair in my car independently. As I can't stand at all, it means I have to drag my wheelchair over me to place it on the passenger side, so hopefully, that gives you a little insight into the difficulties of getting in and out of the car just to go out when you are disabled. 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 believe 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 them 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 something 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 on my back. 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 call it fitted in the first place. Before having it added, I would have to make some other choices. The wheelchair that I have at present would not be suitable for the hoist, so I would need to change it to a folding wheelchair. For an active wheelchair user, this is not 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 costly 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 is not the easiest option on part-time low pay. So as you can imagine, I chose to stay in a lightweight wheelchair. I have managed to get a really lightweight wheelchair which has helped, but I still had to find some 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 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 able-bodied?

I mentioned expectations of employment in the blog's title; 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. So it is now expected that this is possible and doesn't see why it isn't sometimes. But as I said earlier, my back has taken a battering, and so this now means that I get more back pain, which stops me from doing some things because it is just too painful. For a time, before I got my newest wheelchair, people at work were beneficial (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 gotten to this point as DDA states 'reasonable adjustment'. If helping me means I can go to work more because I am in less pain, this is surely 'reasonable adjustment?'.

But now, because I have a lighter wheelchair 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. However, 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 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, work expectations come before "reasonable adjustments" and make it harder for people to go to work and be part of society. The many cuts that the government is planning to make, including DLA and Access to Work, to name a few, will 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- 

http://www.guardian.co.uk/society/2011/jan/12/disability-living-allowance-cuts-charities?INTCMP=ILCNETTXT3487