Disability and the state

When I was younger, I studied social work as an ‘A’ level at night school. My enduring memory is of the night I turned up to watch a cine film. This was the 1970s and you first need to know I have played with and used cine film and projectors since I was very young. The teacher, a woman, was trying to thread a 16mm film into the projector. I went over to offer to help as I know what I’m doing.

She said, “what makes you think you could do this better than me? The fact you’re a man?”

“No, the fact I’ve used cine projectors for years,” I said.

She was still reluctant to accept my help. I realise she was a bit of an extreme feminist, but that event and the course material from the 70s forever influenced my view of social work. I know that’s very unfair of me, but I’m human, I jump to quick decisions about people and ideas. I will give myself some credit though, I am open to changing that opinion.

I had the mistaken idea that social workers were a group of misguided do gooders. I also thought they were set-up to sort out the “dregs” of society. Clean up the mess that no one else was interested in. I certainly didn’t see them as having any relevance to me.

Imagine my shock then when in 2013, I was assigned a social worker for the first time. Even being in contact with Adult Social Care felt like I’d failed. As if somehow it reflected on who I was. I doubt I am alone in feeling that.

Let me take a step back even further than that. I was first unable to work due to illness in 1994. The private company I work for fired me for being long term ill. I suppose that’s fair enough as I had started up and headed a department that was marketing a brand new range of products. Without me, there was no department. They closed it after I’d gone and gave the business I’d hard won directly to the manufacturers. I was suddenly left unemployed with a family to support. Due to my illness Mary had to be around to look after me and couldn’t go back to work.

I grew up believing in hard work and not hand outs. But once I could no longer work, our only choice as a family were benefits. Reluctantly that’s the route we were forced to take. If you’ve heard how difficult it is to get and maintain disability benefits then let me say you don’t begin to grasp the hoops you have to jump through. It’s harder than you can imagine. Being ill and having to fill out long forms and have face to face meetings is stressful and makes you worse. It took me days to fill out each form. Because I was so ill, not only did I get the benefits I applied for, but at one of the face to face interviews the doctor (they were doctors then) suggested I apply for additional benefits, which I then got. As my condition worsened I eventually needed not just financial help but physical care. That’s where social workers first came in. They coordinate and authorise carers and later if you choose direct payments, then the payments. They are part of the team that includes occupational therapists and district nurses who initially assess you. They also recommend and highlight options to help day to day needs when you first contact adult social care. I doubt I have included everything they do as I am going on my observations rather than a crib sheet. When I first had a social worker you were assigned one for all your time. Now you start with one for a few months and then any social worker on duty will deal with you.

It may appear externally as if illnesses or disability in itself is a limitation and embarrassment. But for me I have found the intrusion into my financial and personal life by the state as represented by the DWP (Department of Work and Pensions), far more limiting and embarrassing. We were one of the families chosen for a full in depth check a few years ago. I seem to be regularly checked up on, but I guess that is the system. The DWP basically take your privacy apart. Looking at every statement, transaction, and invoice; spending hours in your home investigating you. It’s like being treated as a criminal, they seem to make an assumption of guilt, and you have to prove you’re innocent. I was and am innocent of cheating the system so that’s OK, but it doesn’t make it less stressful or embarrassing. You may think it a justifiable action to catch those who do cheat the system. But much more money is stolen via tax fraud. I don’t see millionaires being subjected to random in depth checks based on assumption of guilt. If it’s about ensuring the government isn’t cheated of money that would be a fair comparison. Illness and disability are really tough in themselves, the state shouldn’t be making it harder for the minute saving they make.

I understand that when you receive help from the state you should expect scrutiny. But, let me explain it this way. I started work at 16, I didn’t go to a brick University, I started paying tax and national Insurance at that point. I was able to work full time until I was 33 before I became ill. I worked part time whenever I was able to after that. My understanding of any insurance is that you pay it so that in the event you need to claim on it, you are covered. If you claim on your house insurance are you made to feel a pariah? Why should I feel that way having to claim disability benefit from my national Insurance. I am not making a choice not to work, I cannot work. Whenever I have been able to, I have. Surely that’s what disability benefits are for. I should not feel guilty or a lesser citizen for receiving them. Disability benefits should be a safety net for those of us, who through no fault of our own are prevented from working.

Let me finish with my personal experience of social workers. I have known several really good social workers over the years. I won’t name them. They have been compassionate, kind, caring, helpful and understanding. Without their help we would have been in a far worse mess. My misunderstanding of what social workers were led me to have an initial anxiety about meeting them. Now that I have know several I realise how wrong that expectation was. I can only say if you are a social worker, thank you for your dedication and hard work. If you are going to be meeting one, you will find them helpful and understanding.

Author: Mike Nevin

I decided to write about the funny side of being cared for. I am a full time wheelchair user with daily carers. It's my experiences with my carers that inspired this blog.

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