Back in October, after Theresa May promised an end to austerity, we ran an article on a new book, Austerity’s Victims. It shows the real effect of austerity on people with learning disabilities by telling the stories of real people. Here, author Neil Carpenter shares an amended extract from his book, focusing on the story of Danny.
I don’t hold out much hope for Theresa May’s promise, particularly when I can see, first-hand, what’s often being taken away from disabled people. I’ve been working for six years as a volunteer advocate for adults with learning disabilities. I go into day centres, help run drop-in advocacy sessions and visit people in their homes. I see, day-in, day-out, how the squeeze on the UK’s purse strings has affected disabled people.
That’s what compelled me to write Austerity’s Victims. It focuses on adults with a learning disability, a term which would not normally include someone like Danny with acquired brain injury. He is, however, included in the book because day centres and advocacy organisations make no major distinction between the two categories: they are all people in obvious need of help.
Further spending cuts are planned until 2022, and Danny himself is scheduled for another Work Capability Assessment in 2019. Then there’s his impending PIP Assessment and a transfer to Universal Credit. I fear for his future, especially when I know what he’s recently had to fight for…
Austerity Victims – Danny’s story
I was born in Buckinghamshire in 1957. Once I left school and before my accident I always had a job. To start with I worked as a messenger on an army base. After my family moved to Cornwall in 1976 I found jobs on building sites and finally as a hospital porter.
All this came to a sudden end in 1980. On a road near my home, I lost control of my motorbike and was thrown against a wall. The impact broke my jaw, with part of it cutting into my brain.
For over six weeks I was on life support and in a coma. Once I was conscious, I couldn’t walk or crawl and had lost most of my memory.
I stayed in hospital for several months. When I was let out, I had changed. Despite all the treatment, I had gone from an active man to someone with the brain of an eighteen-month-old child.
Once back at home with my family, progress was slow. After learning how to crawl, I gradually found out how to walk again. But my legs ached and I had to put up with pain in my groin and lower back if I was on my feet for a long time.
It was ages before my family could think of any sort of independence for me. It wasn’t until more than 10 years later that I moved into a flat on my own.
Becoming independent again
I tried to return to paid work, but couldn’t manage it. So I started at a horticultural day centre where I’ve now been for more than 25 years. I’ve managed well there because the staff understand me. They know the difficulties I have and that I like routine.
Now, more than 38 years after my accident, I still don’t work full days because of the way my tiredness builds up. The aching in my legs eases if I lie down, and I normally do this once or twice a week when I get home from the centre.
Walking is still hard going. Getting to the bus stop in the morning for work would only take someone without my difficulties 10 minutes. But because I have to rest on the way, the whole walk takes me twice as long. I know where all the benches are!
My memory is still bad. At home, although I have a box marked with the days of the week, I still can miss taking my key thyroid tablet – once it was for three days in a row. The same thing happens at the day centre when a member of staff gives me a piece of paper with an order for me to prepare in my greenhouse. I can easily lose it.
Stress is also a real problem for me. My doctor is investigating what he says is my ‘low mood’. Health problems don’t help. I have palpitations – sometimes at night, but mainly when I feel under pressure. I have an underactive thyroid and in 2014 was diagnosed with emphysema. It’s getting steadily worse.
Losing my benefits
Because of all this, I cannot understand what’s been done to me. First of all, social services took away the funding for my place at the day centre because, in their words, I was going there for ‘social reasons’. Thankfully the centre manager allowed me to carry on without the funding because he felt it would be cruel to take my place away.
The next thing was far worse. For some reason, I had to attend a Work Capability Assessment with my mother in early July 2016 – the first time since my accident.
When I came out, it was only when I spoke to my mother and brother that I realised all the other things I should have said. For example, when I was asked about my breathlessness, I forgot to mention my emphysema.
In early September that year, when the result of the assessment came through, I broke down in tears. I had only been awarded six points – I apparently needed 15 to keep my Employment and Support Allowance (ESA). At £116.50, it was the main part of the £160.10 I had each week to live on. Disability Living Allowance at £43.60 was the other part.
The ESA assessment didn’t focus on what I couldn’t do, only the limited things I can. To check my balance, I was asked to do one squat and from there look up to see if I had any dizziness. I ‘passed’. But if I had done it for any longer it would have shown my problems.
They got my walking wrong, too. My 20-minute walk to the bus stop resting on benches became; ‘he walks at a normal pace to the bus stop – it takes 20 minutes without stopping.’ Their opinion that I can move more than 200 metres on flat ground didn’t consider the real problems I have. A rough surface can make me trip and a slippery or icy surface is a real problem for my balance.
They also didn’t take any notice of what any slope in the pavement does to me. Walking uphill puts an extra strain on my breathing. Walking downhill is difficult for me because of my balance.
The letter also said that; ‘I can usually stay in one place (either standing or sitting) for more than an hour without having to move away.’ This is because of the doctor’s opinion that; ‘I was able to sit on a chair with a back for 70 minutes, at the assessment’. This, though, ignored the fact that I was twice asked to stand and walk to the examination couch by the doctor, which eased the pain in my groin.
They also got other parts of my life wrong. The report stated that; ‘I deny self-harm’ despite the fact that when I was asked by the doctor if I had thought of suicide, I said I had, but that I didn’t know how to do it.
Perhaps the key point was made by my brother at the end of his letter asking for a reconsideration of the decision. He said: ‘When I see no fundamental change in Danny, I am at a loss to understand why ESA should suddenly be taken away from him, especially as he is now approaching the age at which the neurologist treating him after his accident in 1980 said that his condition would begin to worsen.’
For me, it was simpler. After the accident, I had managed to build up a life. Now they were just taking it away.
Thank God it got sorted quickly. My family’s request for Mandatory Reconsideration of the decision was successful in October 2016 and my ESA was restored.
But the fact remains that I went through all this only to be put back to where I’d been at the start – and what do they think the effect was on me? And what about all the people like me who don’t have a family or a day centre or an advocate to help them? They must be put through the same misery as me. The only difference is they end up with their ESA taken away.
By Neil Carpenter