What a Difference a DLA Makes…
I couldn’t think of the right picture to go with this post, so let’s start with that sightly blurry photo of a painting of Jason and the Golden Fleece.
Now, I’m well aware that an art therapist would have a field day on a painting of a healer who is strong and sexy, but wearing a ram’s skull for a head and is smothered in blood among a field of bloody colours.
I want to talk about the difference that Disability Living Allowance and other kinds of support for disabled people has made to me, but I think I want to describe the scene in which I made that painting.
I’m not going to go into detail about my impairments, partly because it’s a broken record of a tune that upsets me to hear it. It’s been bad enough having U2′s One stuck in my head, but “this is what went wrong in my back” isn’t even remotely tuneful.
Fuck, did I just pay Bono a compliment? Must be back pain empathy for his (mercifully) cancelled Glastonbury performance. (Although what was that Gorillaz set about?)
Anyway. When I did that painting of Jason, I was having a day where it was too painful to sit at my desk, even with the specially-adapted ergonomic chair I use which means I can sit for about twenty minutes at a time before having to get up, stretch or lie down to avoid pain.
I was still buzzing from finding out that the Quay Arts Centre in Newport wants to sell prints of my mythological nudes, and, like most artists, getting positive feedback is a spur to make more, and more daring, work, so I wasn’t going to just take more painkillers and go and spend yet another day in bed.
I drew Jason while I was lying on the floor, picking up reference images from my iPad and typing in search terms on a keyboard that was horribly expensive, but it was the only one that felt like I could use it without triggering pain in my hands.
I propped Jason up on the small, portable easel I have, which is easier to use from the floor, and stacked all the pillows in the world underneath me so I could lie on my front and spatter his naked body with gore.
I think it might not take an art therapist to understand why I painted the healer with a mask of death and a veil of blood when you realise I was in pain when I made this image and fearful that the pain would not end.
Let’s take a look at how I made the picture, and this might bring it back to the original point about support for disabled people.
Art is never entirely a picture of the moment, but in the artist’s marks is information about their hand, their mind and their history, so let’s take a look at those for a moment.
I studied Cultural Studies at Norwich Art School in the late 90′s. It was an intensely theoretical course to develop critical thinking skills in interdisciplinary arts practitioners. I studied feminist psycholinguistics, social art history and semiotics while making scratchily intimate black and white portraits (and processed and printed them by hand) and darkly introspective poetry.
During my course, I had terrible trouble with depression, the untreated ADHD and the migraines that caused me to black out or be unable to speak with almost no warning whatsoever. After another failed suicide attempt in my third year, while I was writing a paper on the Anthropic Principles in Quantum Physics as a belief system, my tutors gently broached the subject of special consideration when marking my work because of the difficulties I had.
I guiltily confused shame and pride and told them that my work had to stand by itself and that I didn’t want special treatment.
I still got a 2:1, but was told after the grades were given out that they had wanted to give me a very strong First for the powerful poetry and bafflingly scattershot dissertation that I’d submitted, but there just wasn’t enough of the supporting work there and they could see clearly where my impairments had, well, impaired my ability to complete the work.
I left art school, found life overwhelming, tried to end it and instead found myself homeless in Leeds for several months before an appointment with a Housing Association officer who could see past the smokescreen of bullshit I’d put in front of her and gave me a home almost immediately because it was obvious that if I had to remain homeless, the chances of my killing myself rose exponentially.
I went to meet with someone at the local support centre for deaf people, who offered me a job doing communication support for Deaf students, but very gently suggested I take out some of the piercings and soften not just my appearance but my nihilism.
It was going well, but my pride and shame stopped me from standing my ground when my manager shouted at me for needing to take time off work to investigate why I’d collapsed in agony and couldn’t get up off the floor one morning. I didn’t stand up for myself when she said I had to use my holiday for visits to a psychotherapist. When I saw a murder and couldn’t function at all, she refused to give me time off for police interviews, so the hope of getting counselling seemed impossible. I applied for DLA on the grounds of depression and the crippling migraines, but the letter back told me that it was all going to get better and I didn’t need any help.
I ran away and ended up in London, taking refuge with my mother and trying to sort my life out. I got another CSW job, then became the community interpreter for the London Borough of Newham’s BSL community. Child protection and domestic violence on a daily basis sat ill alongside the murder trial and I had to stop work because I couldn’t function.
When the support ran out for me being off work, I started to freelance, and managed pretty well for a few years, enjoying the anonymity of that work, where you start off by saying “just pretend I’m not here” and you don’t mention how badly you wished it was true.
It wasn’t until I’d over-worked myself to the point where neither of my hands would open that I finally had to acknowledge that I needed help.
When the trapped nerves in my arm meant I was in wicked pain on a constant basis and I had to ask people to hold cups or get straws for me to drink through because I couldn’t get my hands to work, there was finally something visible that I couldn’t deny or hide.
I applied for DLA and although they ignored the mental health problems (because I wasn’t going to therapy or taking antidepressants, so obviously it had all gotten better) and the neurological problems (because obviously if they couldn’t fix on a diagnosis for why I kept blacking out and being unable to talk, it wasn’t a problem) but they did give me lower rate care because I sometimes needed help with manual tasks, so I passed the cooking test.
I desperately wanted to work, but I couldn’t. It was at this point that I was drawing Badger drawings on post it notes. The pen was the only kind I could hold comfortably, and post-it notes didn’t need the other hand to hold the paper down. When people connected with the character I’d made to try to find words for how depressed and lonely I was and how terrified I was at dealing with losing my job and the use of my hands, it was a revelation. I wasn’t nearly as alone.
I started making comics while I recovered; it turned out to be a good way of re-training my hand after I’d lost all feeling in it.
Several friends kicked me towards Access to Work, who, to my surprise, were brilliantly supportive (if frustratingly badly-organised). I got an ergonomic chair, a drawing board, a new desk and a budget to have someone help me at work with tasks that would cripple my hand.
It felt stupid having to pay someone to rub out my pencil lines for me or to fill in large areas because I knew what I wanted to make but couldn’t do it without hurting myself, but my productivity became that of peers without hand injuries.
I started to gain confidence in my work because I had the support I needed and the equipment that I needed, so I applied to do an MA. The college pointed me to the Disabled Student’s Allowance and they bought me a laptop, because it’s slightly easier for me to make notes on a keyboard than by hand, they got me a scanner with OCR for converting notes into easier-to-carry formats and they got me speech to text software, just to give it a go. I also had a budget to help with other additional costs like printing or photocopying or for if I needed someone else to type out an essay and speech-to-text wasn’t working for me (I can’t think like that, so I don’t use it).
I was overwhelmed, felt a little bit like a cheat, but it meant I could actually not just finish the course, but engage with it and these things that made it easier for me meant that I had the head-space to experiment and push myself further.
I graduated with a good mark, and this time I wasn’t too worried that I’d asked for my grades to have no consideration of the difficulties I’d had during the course (I’d been in and out of hospital to get scans and on a rainbow of different drugs to stop me from blacking out, none of which worked) and I was selling a lot of comics by the end of the course.
Now, the problems with my back that hurt my arms has now hit my legs, too, so I can’t move nearly as much as I used to. I spend my DLA on a gym membership to help me have structure to keep me doing the exercises I need to do, and because I can use a cross-trainer because it doesn’t have the impact on my back of running.
I use my DLA to pay for the ferry crossings I have to make on a weekly basis, but I don’t get to choose my route because I’m disqualified from driving because of the blackouts and because not all of the ferry routes have lifts. The one I use is the most comfortable. I go by train because I couldn’t manage the cheaper option of getting a lift or using the coach and I can get up and stretch when I need to.
I bought an iPad with DLA because it’s lighter to carry, and an ergonomic keyboard to use with it.
Working Tax Credits take the edge off feeling like I need to push myself twice as hard at work to survive because I’m still paying off tax debts from the year I went from earning £40k to incapacity benefit because my hands had given up. They also mean I don’t have to panic if I have a day where I can’t do the work I’d planned and instead have to lie on the floor and push myself in new creative directions without knowing for sure that there’s anywhere I can sell the thing I’ve made.
They also mean I can carry on as self-employed without the fear that a job would turn out how every job I’ve had in the past has turned out, with me walking out after a few months in frustration that the workplace just won’t accommodate my needs. Without that stress, I’m a lot less depressed.
So, at the moment, I get lower rate mobility and care, although I’m asking for that to be looked at again because I can’t walk the length of five buses without support, or whatever the daft measure is.
When the government changes its setup for support for disabled people, people who currently receive lower rate DLA will somehow miraculously cope without and can feel enormous gratitude for not being a burden on the state.
I’ll lose not just DLA, but also lose the easy route to being able to get things like a bus pass or a discounted railcard. It will suddenly become more complicated to get help from Access to Work when I need it (both of the support workers I’ve had have gone on to awesome new jobs and said they benefitted from working with me). I won’t get working tax credit on the grounds of disability, so I’ll suddenly have none of the things that help me keep working and I will inevitably wind up on out-of-work benefits, needing my living costs, housing costs and council tax paid for by the state, on top of the likely additional bill to the country that comes when I sink into depression and that depression triggers even more seizures.
Ironically, when I hit rock bottom, chances are that I’ll then be able to get the support I need, so it’ll become some awful wheel of recovering only to have support withdrawn and to sink again.
I had help every step of the way when I finally overcame the deep sense of shame and grief I felt about needing help I hadn’t previously needed. That help isn’t available to people in identical situations right now and will be available to far fewer in the future.
Being told over and over again about the inspiring achievements of paralympic athletes doesn’t do anything to allay the fear that I am becoming increasingly incapacitated or that I somehow lack the drive to “overcome” disability and be almost as good as normal people.
I’m not the same, my pain, my mind, my hand all control the marks I make, and, old-fashioned though it is, I think there’s an aspect to art that isn’t and shouldn’t be normal.
The prints of fey gods dancing in misty woods that will be in the art gallery in Newport hang on the support I’ve received and continue to need. Without it, the pictures and I will both fall and shatter.
Jason is a healer, but wears a mask of pain, blood and death.