Feeling the Fear

L.S. Lowry The Cripples

I have tried to keep away from the political as much as possible. Of course I know politics is everybody's business and I know only too well how much it affects my life, but in the run-up to a General Election I pick and choose where I receive my information. I am happy to read manifestos, read newspapers and check out blogs but that's where I draw the line. I hate the petty and pathetic arguing of PMQs and all the braying, name-calling and school-yard taunting of the House of Commons. I won't watch the TV debates because they always degenerate into nit-picking rows about issues that mean nothing to me. Is it only me, or are none of the parties being specific about or standing up for the disabled people of this country?

I notice that in the last couple of days the Labour Party have produced a disability manifesto, probably due to questions like mine being asked as they travel round the country. It does address some issues, but not the most important question of whether our income will remain the same. Living on a fixed income is difficult enough but with Conservative Party plans to roll out Universal Credit despite knowing that it will hit disabled couples hard - in some cases to the tune of a £300 loss - as they lose their premium for caring for each other. We already know about and can feel the differences of ESA and PIP, especially those sneaky little changes such as lowering the distance you can walk before benefit kicks in, and removing the word pain from the mobility section - I have been told that as long as I can walk the distance specified that means I lose benefit, whether I walk that distance in agonising pain or not. I am also aware that the cuts mean there are less CAB staff and voluntary sector workers to help disabled people with complicated forms meaning those less informed are more likely to lose benefit.

The news last week that Tory think tanks were considering such measures as removing Carer's Allowance and Contribution Based ESA were terrifying for some. In my usual post at the centre for MS in my local city members were downcast and frightened. A group sat around discussing what these measures would mean for them. Certainly for me, losing my contribution based ESA would mean losing income of £400+ per month - these are not small figures. Taking away someone's right to claim carer's allowance for me means I would have to pay someone from my PIP to clean my house and help with care. So what would I use to pay my bills? Others were concerned about the carer's allowance they currently claim to look after their spouse - many in Lincolnshire have been hit unfairly by the council's application of Bedroom Tax legislation where if you sleep in separate rooms because of your disability you will still be charged for the second bedroom. Of course you can fill in a six page form to apply for their discretionary fund but this fund is based on income - you have to show not only income but the breakdown of your household expenditure so that some official can decide how you should be spending your money. I know couples who had their application to the discretionary fund turned down because they 'earned too much'. My understanding of the bedroom tax was that it was applied to those people with more room than they needed, not for those who need the extra room and have extra benefit due to a disability. Not even showing officials around your living space works to prove you have no extra room, because according to our council it is not about room it is about money and they are counting DLA/PIP as extra income.

I am scared about my future now. I know I will never be able to work full time and I know I will always have MS. I imagine a future of having no disposable income with which to enjoy my life. It is a feeling of being slowly pushed back indoors where we 'ought to be'. I have always been very creative with my cash, making sure I save for future trips like my recent one to Venice. Part of my recovery after relapsing has always been having something to look forward to. If these cuts proceed as planned then there will be nothing to look forward to. I love seeing other people with disabilities around, enjoying life and becoming part of society. This government has made sure we are not part of society by looking down on us, insulting us, making others suspicious and even jealous of us. A friend asked for help carrying his groceries out to the car at a local supermarket. He is a paraplegic with a high level injury so is a permanent wheelchair user. The shop assistant popped the box in the boot and then commented on the car 'this isn't bad is it?' and 'I can't afford a car like this'. There is this misinformation, perpetuated by tabloids like the Daily Mail that disabled people are 'given' brand new cars. People don't seem to realise that is paid for by all those luxurious benefits we get. Whereas previously disabled people could still buy a home or get a loan to afford a holiday now they are being turned down because benefits are no longer seen as a 'safe' income. The inference is that we should know our place and be seen to have a more fitting lifestyle of poverty. The argument that benefits caused the deficit is clearly spurious to anyone with a hint of a brain. Pensions take up the greatest section of the benefits bill with ESA and DLA only a small proportion. This is not really to do with income it is to do with stigma.

I was having lunch with my ex in-laws when one of them pointed out a disabled man eating with his family. He was using an electric wheelchair and needed to be fed by his wife/carer and my mother-in-law seemed very shocked by this -'what is he doing out?' she asked. Luckily I didn't hear about this in full till after the event because thankfully I was at the other end of the table. This man was not much different to my previous husband before he died, and we used to travel about all over the place. I couldn't believe the old-fashioned idea that disabled people shouldn't be part of mainstream society was still alive and well. This is the attitude I feel is creeping back into society. It is the idea that disability is so repulsive, so 'other' that a barrier needs to be between us and the 'normals'. The buffer zone was once the institution where within living memory people who were unacceptable were kept separate. The welfare system slowly changed all that. Disabled people were allowed to be visible, to be part of their communities and with the rest of society. I feel a reversal of this attitude and now it would seem to unacceptable to reintroduce institutions there has to be a different buffer zone - the buffer zone of poverty.

As much as I am desperate for election day to be over I am also very scared about what the future holds for disabled people beyond it. In my role as counsellor for people with multiple sclerosis I can already see how the changes are affecting the mental health of the people I see. The people who make these speeches, decisions and changes don't have to see the fall out of their policies, but I do. I can only hope for a more understanding and compassionate government who, at the very least, stop the rhetoric of hate. I saw that someone had finally reported Katie Hopkins for incitement to racial hatred, but who do I report for incitement to hate disabled people?