I’ve decided to write some entries for the Guardian Benefits Diaries project. This is my first one by way of an introduction to myself and to a couple of the issues I will be talking about.
I’m disabled. I’m a wheelchair user with a lot of nerve damage and hypermobile joints as well as a person with post traumatic stress disorder. I can’t do much in the way of work because my condition fluctuates daily. In the morning I may feel great, by lunch I might be unable to move without crying and by the evening I might be a bit better again or knocked out on some pretty strong pain killers. As a result I claim benefits; employment support allowance (ESA), disability living allowance (DLA) and housing benefit (HB). Last year after a three year battle I moved into an adapted one-bedroom bungalow with my partner so we also rely on social housing.
In 2010, when the coalition government came to power many of us started to feel uneasy when they began to talk about welfare reform and we began to read in tabloids about “fake disabled people”, “high fraud rates” and “scroungers”. I grew up under Thatcher and Major and I remember how they would demonise single mums in very similar terms before using the outrage they had whipped up to savagely cut support. I didn’t want to see it happen to disabled people. When the government released the welfare reform bill (WRB) in 2011 some of us rose up to try to fight it and our numbers grew as it progressed through the commons and huge chunks were defeated and amended by the Lords. We keep fighting the changes, because we have to but up until now a lot of what we have done has been academic. We’ve talked about the potential harm these changes could cause when they come into effect but as of this month things have changed.
Many of us called the 1 April “Black Monday” - the day many of us campaigning against the welfare reform bill have been dreading for a while. It signalled the start of a whole tsunami of cuts to the incomes of some of the most vulnerable individuals & families in the UK. I wrote a blog post about it called “Is resistance futile?” which was inspired by the gut wrenching feeling that I had waking up that morning when I remembered what was happening.
I, personally, have been pretty fortunate. The benefits cap doesn’t effect me and as it stands nor does the bedroom tax. That said, if my partner and I tried to move to a two-bedroom home (something that we are entitled to do because my issues make it near impossible for him to be able to sleep in the same room a lot of the time) we would be hit by it. That’s quite upsetting. If my condition gets worse and we start needing a second bedroom desperately then we’ll have to factor in not only the extra costs of heating it but also of paying an extra £14 a week for it. Why? Because the bedroom tax (or “spare” room subsidy) currently doesn’t recognise that partners/spouses where one is disabled and the other is a carer/also disabled may not be able to share a room.
I will be hit by the abolition of DLA and it’s replacement by Personal Independence Payments (PIP). DLA has been my lifeline, being awarded it changed my life for the better. When I first became disabled I had no idea just how expensive it would prove to be. It was 18 months before I had a NHS manual wheelchair. For those first 18 months I spent a lot of my time trapped not just in my house, but upstairs in my house. I lived in my bedroom and bathroom because more often than not I couldn’t manage the stairs, let alone travel out of my house. When my partner came back late from work and was too tired to cook then we simply didn’t eat. We suddenly couldn’t cover our bills or rent but, because I was disabled we couldn’t find a privately rented flat that came even close to being both affordable and accessible. Without money and therefore without the ability to “buy” help to get me out of the house or into a more accessible home or to buy care services our lives crumbled. We both feel into deep depression. Then, over two years after becoming disabled I was granted DLA, higher rate care & mobility and backpaid. I could suddenly buy a electric wheelchair so I could go out on my own. I could afford basic adaptations so I could leave the house. I could afford to get a taxi so that I could visit places when a bus wasn’t an option. I could pay for personal assistants to come and support me so my other half could live his own life and actually work or train. When we were both too exhausted to cook then we could have pre-prepared food in the house. It was amazing. Now they are getting rid of that and I’ll be part of the wave of people being reassessed in 2015. PIP is supposed to be much harder to claim than DLA, the government said from the outset they foresaw 20% of DLA claimants either getting a reduced benefit or none at all. Given DLA has a fraud rate of 0.5% according to the DWP the vast majority of people loosing out will be disabled people, just those who are not judged to be “disabled enough”. I won’t know my fate until 2015, but there are others with shorter term awards and some new claimants who will be being moved onto this new system as I type.
I’m going to leave this entry for now because I’m exhausted, but I hope it has given you a quick introduction to what I am going to be talking about and why it concerns me so very much.
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