I don’t like living in a world where the squeaky wheel gets the grease…

One of the many reasons I have a blog is because it’s a helpful way to ensure that I have a reasonably solid grasp of what’s going on in the disability world.  This is useful because the system of support that we have is vital to my brother Richard’s heath.  There are occasionally problems with the system: assessments delayed, paperwork lost, knock on effects of cuts-elsewhere. It  helps to know the system, because then we can ensure that Richard gets the care he needs.

Sadly, it turns out that defence of your rights, budget, and care package are a zero-sum game. If my brother’s care was cut, resulting in a genuine and immediate threat to his health, then we’d fight to have it reinstated, it would probably work. As a family we are well informed, capable of being angry at the right people, and it’s no longer just my parents in the fight, it’s me as well.

But that won’t magic more money into the budget. The care we achieve for him, will be taken from someone else. Because there isn’t enough money in the pot to save everyone. Just an increasingly desperate set of families and workers trying to paper over the cracks.

This is a problem.

I posted recently about things that would change my vote. Here’s another one: daylight savings time. If one of the major parties puts ‘remove daylight savings time’ into their manifesto – that’s going to genuinely affect my vote.
Other things I’d like to see include:

  • making the BBC license fee part of general taxation (and letting the iPlayer be viewed internationally).
  • Making all pictures taken by the BBC public domain (in the same way that NASA does).
  • I’d like to see policies on policing not prohibiting material on the internet because I think that censoring free-speech is more of a threat to society than terrorism is.
  • I’d like marriage to be revenue neutral – I don’t like that idea that there is a financial advantage or disadvantage to doing it.

There’s a point here, and it’s that all of these things are, well, small. They all have clear advantages and disadvantages, and most of them are either low-cost (in respect to the overall budget) or negative cost.

When things get bigger I have trouble. So I’d be happy to see the whole coast ringed by wind generators if it reduces our energy dependence, but I don’t know anything like enough about the situation to actually weigh up the alternatives.

More to the point, for readers of this blog, I’ve got no big plan for disability. I see case after case where a person with a disability (in particular cognitive problems) has got the help they need only after a very long period of advocacy on their behalf. So quality of life for someone with severe cognitive problems is vastly dependent on being close to someone who can advocate for them. This advocacy is much more effective when the advocate themselves are in an advantaged position. Doctors who are advocates don’t get beaten down by red tape in the process, solicitors who are advocates have few problems, and academics who are advocates read the right bits of text, and make the right calls. And because it’s a zero-sum game that means that someone else gets screwed.

I don’t like this. I’d like everyone to have the care they need. But the problem is that the care is very expensive. Very expensive. And while I can see it’s wrong, I can’t work out how to find the money to do it right.

I have NO big plans. I have faiths – I have faith that transparency it’s worth the cost, I have faith that open-data will save us all – but a religion isn’t the same as a plan.


One thought on “I don’t like living in a world where the squeaky wheel gets the grease…

  1. Great insights. Most people who benefit from being the squeaky wheel never stop to realize that it’s a zero sum game. It’s all to easy for people to see their own friend/relative with a disability as the center of *their* world and then presume that makes them the center of *the* world. Any thoughts on the solution? Maybe removing some of friction in the red tape. So, essentially the same rules but an easier system to use. Unfortunately, the people what could advocate for that may be a little busy advocating for a loved one.

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