This is a post I have written for the Leeds Poverty Truth commission, which I post here for others to read and ponder.
Over the past seven years I’ve gone from being hospitalised every couple months to getting a place at University. I didn’t do it alone and although it was hard work it also came about through support.Family, friends, people at poverty truth who accepted me warts an’ all, Inkwell arts (Leeds MIND) who helped me see my skills as a crafts person and helped me with my Uni interview.
But just as important was my disability payments.
I don’t drink, smoke, use drugs. I don’t go clubbing, haven’t had a holiday in years and am not a fashionista. I didn’t waste money as many people on benefits are accused of doing.
Yes, I had a TV, and I had Internet, but my TV was a bulky second hand thing that stopped working when we went digital so yes, I had a BT box as well.
The disability payments helped me fight my agoraphobia by paying for a taxi when I felt I couldn’t walk on the street. It paid for a cleaner once a month who helped me keep my flat in order, It gave me enough money to attend the weekly knitting group, which in turn gave me confidence to start a regular knitting group of my own.
Most importantly it gave me my life back.
Sometime in November I received a letter from the benefits office informing me that I needed to change from DLA (Disability Living Allowance) to PIP (Personal Independence Payment). An assessor arranged to visit my home and assess me to see whether I qualified.
Now, I want to pause here…
Apart from the paranoia, voices, agoraphobia and all the other symptoms with my diagnosis I have an additional difficulty – I’m Articulate.
You might not see it as a problem, but mixed with a mental illness it can be a nightmare. You see, many people associate mental capability with the loss of speech. My ability to string a sentence together doesn’t affect whether I feel able to open my front door or curtains and get myself to the bus stop. However, as many articulate people with a mental health diagnosis will tell you, it can be your downfall.
And I think that’s what happened to my PIP application.
As the rejection letter stated, I was able to communicate. 0 points.
Forget that the assessor saw how I lived in a flat that could be on a Hoarders TV show. Forget that I am afraid of opening mail, or I forget my medication, or in times of extreme stress I can forget where I am and wander off. Forget that I haven’t opened my curtains in over six months because I don’t like the thought of people being able to see me. Forget that I have difficulty with basic living skills. Because I can talk about it, I can do it.
I needed 7 points to qualify, I got 6.
What began next was an immediate downfall and relapse of years of hard work. Eight months later it’s almost over, but I wanted to share what it was like, those eight months trying to survive on the basic benefit of £106 a week.
Mentally I thought my world had ended and started to think about how I would survive, I considered leaving my flat and living on the streets where my bills wouldn’t be so many. I even considered prostitution, seriously considered prostitution. I volunteered for a charity that worked with street prostitutes, but overnight I went from valued volunteer to client. Even though I didn’t return to the streets, there was a shift of connection between me and the other staff/volunteers. Even if they didn’t knowingly change, the change in who I was to them had changed.
After the initial shock came a long period of cutting back. I had to get rid of my cleaner, my visits to the knitting group disappeared because it was held in a pub and I couldn’t afford to eat there, couldn’t even afford a Diet Coke. I couldn’t afford a taxi in emergency, so I spent more time indoors which saw a return to my agoraphobia.
The benefit I am entitled to doesn’t include free prescriptions and my GP wouldn’t trust me with more than a fortnights worth of medication, so I cut down my medication, cutting each tablet in half.
Half of the medication led to me being more emotionally unstable and I began crying at every difficult situation.
When I could manage to be practical I began cutting back on bills, my TV was the first thing to go, but I need the Internet, I have a dream of running my own business and the Internet was needed for study, but the Internet needs a landline to work so I also need a phone. The phone is also my call for help when I am unwell, my only way to ask for help when the black dog of depression makes leaving the house impossible.
Because I am at University I get a grant, somehow this was a lot less than the previous year and since I’m on a textile course a lot of the grant went on materials I need for the course. My results went down and I had a few occasions where I found myself hiding in the toilets to cry. I even had to consider whether I could afford to go to University, but knowing if I quit I still had to pay off the debt was the one thing that kept me attending – I was screwed whether I stayed or quit.
Food at University is expensive, so I missed meals, I tried taking sandwiches, but I have a two hour commute to uni and since I find looking after myself difficult at the best of times, getting things together enough to make a lunch everyday was virtually impossible.
I remember one lesson where we had to make our own paints. We were asked to bring in organic, free range eggs. I cried in the middle of the supermarket because I had to buy eggs that I couldn’t afford knowing it was going to be turned into paint when I really needed food.
The university has a hardship fund, it has to be asked for at the main reception which is manned by young students. I felt devastated having to ask someone over twenty years younger than me for a hardship fund form. The shame that at my age I couldn’t handle money. The form itself doesn’t allow you to hide the shame though as there in bold letters blazoned across the front are the words HARDSHIP FUND. Thankfully no one from my course saw what I was carrying. Filling it in was a nightmare, I had to get help. I’m not stupid, but I found the form almost impossible to complete.
Despite the hours it took to complete and the pages of evidence I had to photocopy, I didn’t qualify.
My grant ran out very fast, and university finished far too early, and I found myself in May, with endless days of emptiness. I start my intern year in September, but placement after placement was unpaid. One milliner wanted someone to work five days a week, no travel expenses paid, but she’ll make a sandwich for your lunch. A lot of students had given up and gone straight to their final year, it was unadvised by staff, but you can’t live on fresh air and companies seem to want free labour.
I remember the first time I ran out of food. Where do you find a food bank? Thankfully I had the Internet, but if I didn’t have that I’d be totally without connection to the outside world. Another shame, having to ask for food. I was an emotional wreck as I turned up at the food bank, crying far too hard to make my needs known. I’ll never forget the Christian couple who sat me down and gave me a cup of tea, allowing me to gather what little self esteem I still had. They gave me food, some essentials and when I got home I found a small box of maltesers. I sat there with this box of chocolate, wondering why I deserved this? I can’t afford a pint of milk, so why should I have a luxury like chocolates?
But the food parcel contained other things, a tin of unknown meat I smelled and decided I couldn’t face, a tin of hotdogs I didn’t know what to do with. Pasta, more pasta than I knew what to do with (Pasta is fine, but you can’t eat it on it’s own). Knowing food bank parcels are limited to three I also knew I could only get one in extreme emergencies. I’d have to be at deaths door to get another one.
My local church does a three course meal every day, £3 for three courses. I was in the church one morning when a man came in and asked if he could only have the soup and main meal and pay £2. He was refused.
“It’s £3 for three courses. If you don’t want the pudding you don’t have to have it, but it’s still £3”
Another annoyance was the realisation that a lot of Christian people had no idea how desperate things are for those on benefits. I knew this mans willingness to forego pudding had nothing to do with not being hungry, but the opposite. He simply didn’t have £3. I remember helping out at the messy church and being told since I was helping I could turn up early and have the meal for half price, if only they knew, even half price was out of my reach.
My rent remained at £45 a week because I was a student, you can start doing the maths if you want (£106 benefit minus £45 rent, minus £10 Internet, minus £5 mobile, minus £10 gas and electricity, minus £5 prescription payments, a £5 weekly repayment of tax from a job long since lost, £5 water rates £5 for the computer design programmes I needed for my degree…) A cat that had to have flea medication stopped led to a flea bite that came infectious and an ulcerated leg still being treated on the NHS over six months later.
The appeal process is hard, getting someone to help you appeal is tough enough, but getting the benefit service to give you the correct information is the worst frustration. I was warned by a benefit advice service (who simply couldn’t take on anymore clients) that ‘they’ (the benefit phone line) would try and give me the wrong information. When I phoned to make my appeal I asked several times whether I had made an appeal and had the right information, yet a few months later a follow up call informed me I hadn’t even started an appeal. The wrong information had been given me and I was past the deadline to appeal. What saved me is that I wrote the details of my initial appeal phone calls down.
The appeal itself consisted of a medical form about my illness. I had a NHS mental health worker and contacted her to help me complete the form. She informed me that she wasn’t trained in filling in forms and couldn’t help. Thankfully my switch from volunteer to client at the sexworker charity filled it in for me and the long appeal process started. It also led to me realising my mental health worker wasn’t helping and we decided to part company.
At some point you start to consider the cost of it all. I don’t mean life, I mean the cost of all this to the government. Yes, they stopped paying me £100 a week, but how much did it cost to get four police officers to pull me from the roof of a multi-storey car park when I felt so desperate I didn’t know what else to do? How much has it cost in emergency mental health workers? GP and nurse appointments for an ulcer? I remember feeling so faint a few weeks ago that I considered calling the emergency services, telling them I fainted and hoping they would take me to hospital and give me a meal.
How much has it cost me personally, to go from the person who was getting strong enough that when I finished university I would be ready to go back to full time employment, to the person who wonders whether they will make the next week?
It’s the food that bothered me the most, food and the collection plate at church. It’s the evenings when I felt light headed, or tried to believe Bovril made an evening meal (Hey, I hear it’s becoming all the rage in posh places). Going through the supermarket looking for any packet of rice or noodles that cost around 50p, that’s how much I could afford for a meal.
It’s not being able to go to church because I didn’t have the taxi money and there isn’t a direct bus, knowing that there were members of the church with empty car seats, yet no thought of sharing their luxury, and it’s wanting desperately to tell them exactly why you missed a Sunday, but knowing if they consider £3 a meal as affordable then they simply wouldn’t ‘get it’.
It’s the pretending to my mum that everything is fine, and the phone calls asking her if she wants to go out somewhere, knowing she might pay for a hot meal, my first in a few days. It’s the mixed blessing of finding a £20 note in your pocket that a friend has put in there as a gift. Knowing you are so lucky to have wonderful friends, yet feeling so broken that friends are feeling sorry for you.
A few weeks ago my appeal went before a judge (How much has that cost?) he decided I earned 13 points.
Last week I got a letter from the benefit office saying they have now decided I qualify for PIP
“No” I thought, “You didn’t decide, the LAW spoke out for me”.
When I heard I was getting that small amount of money back (£85 a week) I cried, it’s over for now, they will assess me again in 2018. For the next two years though I have a chance to build up what confidence they couldn’t destroy, gather my self-esteem from the recycling bin and try and move forward again.
Anyway now I get some money, back pay from the time my money first stopped, what am I going to do with that money? I’m going to stock my cupboard because I never again want to go without a meal to the point of fainting. The government hadn’t saved a penny in the end, but they’ve spent a fortune, in NHS, Police, legal bills, far more than if they had left me to work my way back to health. Far more than if they had accepted the word of my GP, and realised that being able to communicate isn’t a gauge for well-being.
Being able to articulate what that period of difficulty has done though, might turn out to be in my favour.
Starving people into work, shaming people to beg for food, cutting single people off from social activity, pushing disabled people off support before they are ready will never succeed.
Imagine if the payments were raised just a little, I know many working people would be in outrage, thinking yet again that we are getting something for nothing.
However, I worked for years putting into the system so that, should I get ill, I would be supported. But the truth is far from what you believe. With just a little more money, being able to provide enough food to feel emotionally healthier, being able to be socially active, to be well mentally enough to succeed as a human, that’s how it should be. If we can move away from shaming and starving people into work, and move towards supporting people to thrive enough and build confidence enough that they are desperate to give back. That will create a benefit system that works.
I leave you with an image of that time, my fridge.
A small note:
It seems a lot of people like this blog, perhaps this post will make you smile and nod too.