Wednesday, 2 May 2012

Still Too Much Info

Kaliya 'Bendygirl' Franklin is short-listed for the Orwell Prize in the blogs category for her personal Benefit Scrounging Scum blog and her latest describes when she actually realised she had a serious illness. Like Sue Marsh, she repeatedly attempted to carry on as normal despite the evidence piling up that this was a bad idea. For me this makes it even starker that they both have vividly described their symptoms and the effect on their lives. They have strong reasons to downplay these things as each of them have entertained hopes of one day going back to work. Many disabled and sick benefit claimants understate what their conditions actually do to them. I don't talk about my issues at all and I have noticed that among other disabled bloggers I am not alone, but I've had difficulty establishing a pattern.

First there is the obvious one. In the campaigning against the Welfare Reform Bill, the making of the Responsible Reform 'Spartacus' report and lobbying of peers- women have taken the lead. Perhaps women are simply more able to express themselves about things happening with their bodies. They advertise tampons on television now don't you know. I once wrote something about how I am personally challenged on my difficulties sometimes and I don't know what to say. I know what is true, I know what happens, but for me it is just too much information to give to strangers. I told the story of what happened in a Starbucks toilet because it is at least humourous to some people, but I don't have many funny stories. Almost everything that goes wrong in my life is not funny and I don't want to talk about it. If I had the problems that Sue and Kaliya had, I couldn't tell the world about them.

The second thing is that they are very seriously ill with physical symptoms that can't be ignored. Maybe they're able to talk about them so openly because they know for certain what has happened. In my case, I am frequently blamed for what happens or it is denied anything is wrong at all and I'm made to doubt my ability to perceive and assess things accurately. This has a severe impact on my ability to function normally, but people see fit to do it to save themselves from embarrassment or social discomfort.

I did not contribute towards the latest PIP consultation on the draft criteria at all. To my knowledge I barely provided any input into the Spartacus group response. I'm not sure this was the right decision but I'm not inclined to think it was a mistake either; the government has shown little interest in actually involving disability organisations or campaigners in any meaningful way beyond tokenism. I expect PIP to be a disaster and the more co-operation is given, the more the government will be able to rely on claiming that it was designed in co-operation with disability groups, as if this was a reciprocal and mutual partnership. The government have used every one of our disadvantages against us when they could get away with it and in my case my main disadvantage is my powerful unwillingness to give intimate personal details of what my body and brain does. I had an episode today, I won't say what it was and what caused it but I spent an hour in my brother's bathroom with my arms under a scalding tap trying to burn a perceived contamination away. There are no descriptors for any benefit that cover something like this. I told the doctor assessing DLA everything I could cope with talking about and it didn't matter; in the end my award was based on some of my most minor issues that just so happened to line up with the descriptors. I couldn't repeat what I said to anyone else and if I had known they would have absolutely no baring on whether I was eligible or not I would have never mentioned them and I certainly won't be talking about them when I am assessed for PIP next year. Kaliya and Sue can talk about their stuff but I can't.

I don't know how they do it but I'm glad they can. Ministers would have the country believing we're all neurosis and bad backs otherwise.


  1. I don't know if it's a female thing or not. I know I often fit behavioural profiles of women better than I do those of men (for avoidance of doubt, I'm male and identify as a man). My involvement hasn't been talking about my own problems much, though - not through unwillingness to do so (I'm really not a very private person), but because my experience has always been that no-one wants to know. I'll be full and frank telling a provider of goods or services how they need to change to meet my needs, to tell Government departments about my own needs, all of that sort of thing, but I won't blog much about my problems or anything. I just don't think anyone's interested.

    I'd love for more people to understand narcolepsy, beyond the caricature that's now the common conception (and even that is only a recent development, 10 years ago people just didn't know at all).

    Maybe people don't take an interest like they do for others because I don't write well enough, or in the right style, I don't know. Maybe it's just the fact that my occasional venting of problems to unimpaired friends seemed to contribute to growing distance. Who knows. Bottom line is that I'm comfortable telling people almost anything, but I just don't think they want to know.

  2. Very interesting read from both of you.