Disclaimer (due to fear of judgement): I am grateful, I know that I am lucky to live in a country where I receive any benefits. I assume that most people who work in the services that I am about to describe have problems of their own. I know it could be worse. HOWEVER…… I want what I am about to say to be known. Just known. I don’t really have any suggestions for change, that’s not my job. I am just aware that there needs to be change. I need to tell you how shit being on benefits makes me feel. I need to tell you that being on benefits does not make my life easier; I live in constant fear; I am always stressed and confused; I am always busy with benefits administration. All because of the system which should be here to help people who already have enough worries.
Let me tell you more. I am an intelligent, ambitious disabled woman. I am 28 years old and I live in Stockport. I am well qualified. I am efficient. I don’t have a paid job. I live on benefits. I am worthy of respect. Yet I feel that my local authority, the government, and the services they provide are incompetent, inefficient, disrespectful, and demeaning. I feel angry that I have to answer to people who, when I pluck up the courage to ring them, do not have a clue about the complex question which I have to ask them regarding my benefits. If the people in charge of benefits can’t understand, how can I? Not only this but, in my experience, the people at the end of the phone think it is ok to be rude and ‘tell me off’. I am an adult, I am a person.
I want it to be known that, nearly every day, I receive a dreaded brown envelope containing a long letter about the latest change to my benefits. These letters often don’t make sense. They don’t clearly explain things. They are very long and involve complex maths. Although I am an intelligent adult I often feel close to angry tears when opening the letter and trying to read it; I know it means I will have to call another person to ask about something I don’t understand and be responded to with a passive aggressive and defensive answer because they don’t understand either. It damages my self-esteem that I have to rely on my parents (in their 60s) to help handle the burden of my stress around this and to help me understand this incomprehensible system of payments.
I dread to think how people with no support or who don’t have high levels of literacy or numeracy can actually cope. There isn’t good enough support offered. I want it to be known that being on benefits isn’t an intellectually or emotionally easy task; to apply for anything you have to fill in very long and confusing magazine-sized forms and provide evidence which is usually one of the aforementioned complicated letters. These forms are distressing to complete; you have to focus on bad stuff in your life which you’d rather not dwell on. You have to say the right thing and avoid saying the wrong thing, which is terrifying. There is the constant fear that if you word something slightly wrong you might lose a vital benefit or risk being made out to be ‘cheating the system’.
It’s the same when I have meetings with people: if I say the wrong thing or do the wrong thing the person, who represents whatever service I’m dealing with that day, looks confused, then anxious, then gets defensive and without really listening to me tries to fit me into a category which never fully acknowledges my situation. If I received this service in a shop, I would take my custom elsewhere.
I always feel a certain shame at these meetings. I guess this is a reaction to the current media rhetoric of ‘scroungers’, a label which I’m scared of attracting. If I act pathetic, to make myself look more ‘deserving’, they patronise me. If I try to be strong, they look intimidated and surprised that I’m not a doormat. They turn up late or early (today it was two and a half hours early) and don’t apologise. They come to my house and try to explain something to me and say “eeeeerm, I don’t know”, when I ask them an obvious question. They regularly make mistakes with my payments – some huge – and don’t notice until I point it out.
The system means that I’m now running a business-like organisation for myself to ensure that all my carers are on a payroll, their timetables are organised, and they pay the correct amount of tax. I never asked to run a business. I have no choice. I feel resentful that I should have to do this when I have enough worries to be dealing with.
I’m terrified of writing this because I don’t want to be seen as a ‘moaner’, or ‘difficult’ or ‘ungrateful’. I feel angry that the threat of benefits being reduced is always looming when the people in charge of my benefits don’t seem to give a shit about me as a person, and seem more concerned with their own income and image. I’m aware that I can’t work many hours due to my illness but that I’d love to have a paid job. I’m aware that I’d be financially better off staying in the benefits system than working the small amount of hours which I can manage. I want very much to cut this vital connection and escape this whole distressing mess; I would love to not have to answer to anyone about what I spend or when I am next available for somebody to come to my house and treat me like I’m dumb. But I’m terrified that if I get off and then fall into difficulties, I might never be able to get back on.
I want it to be known that there is no such thing as a ‘scrounger’ in the benefits game: only the invisible and downtrodden (this applies to all people on benefits, not only disabled people like me). I want us to start caring for each other. I want it to be acknowledged that I’m fighting, and I’m tired.