Wednesday 24 July 2013

If you can, can't you just...

David Cameron gave a speech recently at the Disability Employment Conference, which marked the launch of the government's "Disability Confident" initiative.

I found one paragraph extremely telling. Many will probably see nothing wrong with it and perhaps even find it "inspiring". To me it explains a lot not only about current government welfare policies but wider social views surrounding sick or disabled people who cannot work.

Here it is:
Now that was a message pioneered by Chickenshed, who are performing for us today, as they did on their first occasion nearly 40 years ago. They tell us that there’s a saying in Africa that if you can walk, you can dance, and if you can talk, you can sing. But Chickenshed say even if you cannot walk, you can dance; and even if you cannot talk, you can sing.
As was pointed out to me in the comment below, one way of interpreting this is that people can and should be encouraged to do things differently. The end result is what is important. This is true and certainly something I did while working myself, often having pro-actively to demonstrate it was possible to my employer. However in my experience many are more likely to go for the original African saying and believe that walking means you can dance, talking means you can sing.

I do understand this to a point. I am rather unique in that I have encountered many facets of disability and illness. I did go through a period of remission and during that time I had to relearn to walk. So I have experienced rehabilitation as well as experiencing other sides such as sudden onset of disability from one day to the next followed by a progressive illness leading to gradual deterioration, slowly losing more and more abilities.
When you are getting better and doing something like relearning to walk, the above attitude does pay off. I remember that each day I would walk a little further. One day I would walk to the garden gate. I would tell myself that if I could do that then the next day I could get to the post box a little bit down the road. And I did. And so on. But the same does not apply to a stable or deteriorating illness or disability if you have already pushed yourself to your limits.

It is an attitude encountered again and again, particularly online when people declare that everyone is able to work. I have written about this before "If you can type, you can work". There are many variations on this, some more extreme than others. "If you can use twitter, you can work". "If you can go shopping, you can work". "If you can use a computer, you can work". "If you can write a blog, you can work".

The thinking behind this is exactly the same as that announced by the Prime Minister, but is fatally flawed.
Someone who is just about able to walk with great difficulty and pain may not be able to dance.
Someone who is barely able to talk may not be able to sing.
People take the ability to do one small thing as proof of ability to do something a little bit more challenging. For a healthy non disabled person the difference between the two things may seem so small as to be meaningless. For a disabled or sick person the difference may as well be a mountain.

Let's take a concrete example.
I use an electric wheelchair. My arms are as messed up as my legs and I can only walk a few steps. But following this logic:
If I can walk a few steps, I can walk across the room.
If I can walk across the room surely I can walk just a few more steps to move from room to room around the house.
If I can walk around the house surely I can walk just a bit more to walk up the garden path.
If I can walk up the garden path surely I can walk to the road.
If I can walk to the road surely I can walk just a bit further to the end of the street.
If I can walk to the end of the street surely I can walk just a little bit more to the post office.
So in fact I'm a complete fraud for using a wheelchair, right? Right?

The stupidity of this logic is very easy to see when we talk about something obvious like mobility and wheelchairs. But exactly the same process applies when comparing using a computer, twitter, occasional blogging, perhaps doing a shop once a week and being able to hold down a regular job. If those activities are already the absolute limit of the sick person's ability, then no, they can't "just" do a bit more and do enough to do a job.

This same reasoning is also found in "testing" for disability benefits. Being asked if you watch TV can be taken as proof that you can sit up and concentrate. In my case I have a daybed, watch TV lying down and usually don't get to the end of a program but have to have a break and watch it later. So it would be wrong to do so.
As another example I am currently writing this blog post lying down flat on my back and it has taken me several attempts and rests. Now that is ok. I have come to terms with this and I will not let it stop me from writing it. However the finished product should not be taken as proof that I can sit at a desk and concentrate for a long enough period to write articles like this one.

Testing whether people can work or not should be extremely careful not to make those mistakes. In fact in my opinion ideally the whole process should not be a black and white medical functional test at all but a sliding scale allowing people to do what they can with the best support (and make sure they get it). It shouldn't matter whether that be nothing, 1 hour a week, 10 or 30 and voluntary work should be an acceptable solution, particularly for those whose conditions mean they cannot be reliable. Unfortunately all governments have been implacably opposed to anything resembling a real life test and so this is likely to remain wishful thinking.

4 comments:

  1. I think you could also interpret that paragraph as a nod to 'doing things differently'. If employers could be more open-minded about adaptations, it would enable more disabled people to work.

    When I read the paragraph I think, 'Yes, I cannot walk (very far), but I can dance (in my power-assisted wheelchair, and with limits on how long for and how often).'

    I suppose I spend a lot of time valuing the experiences I can have, rather than thinking about what I can't do. I consider that I have a fulfilling life, and if I wrote a list of things that I have done so far this summer people might think I could work. They don't see all the resting and recovering I have to do in-between (and all the help I need when I do go out and do things), so I do see where you are coming from.

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    1. My reply seems to have disappeared so I will try again.
      I think this is a very fair comment and have added a short paragraph to my post to reflect this.

      Certainly when I was still working I had to encourage my employer to be open minded and show them that it didn't matter that I used an electric wheelchair as long as I could get everywhere I needed to. It didn't matter that I couldn't travel as long as I could give my conference talks via MAGIC (sophisticated version of Skype for lecture theatres). It didn't matter that I sometimes had to work at home in bed as long as the work actually did get done. At the end of the day as long as my research got done and I gave the talks I needed to so that the relevant people got to hear about it, HOW it happened was irrelevant.

      As I got sicker though and had to give up work I found that people were not always very accepting and this is when the "couldn't you just.." syndrome came in.
      For all that I do spend time speaking out about things I deem wrong surrounding disability, I am a fairly happy person the rest of the time! Even though I am now mostly bedbound I have found a lot of things I can do (albeit in a restricted way and with a lot of resting) and am never bored. However I really am always pushing myself to the limits of my abilities. Yet people try to be "helpful" and "encourage" me to do more. It is not only wearing, it is upsetting.

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  2. I think that is a fair comment.

    As a university researcher I had a very flexible job and an employer who (albeit with a bit of nudging!) did make allowances and help. This means that I was able to make them see that it didn't matter that I used an electric wheelchair as long as they stopped panicking about health and safety and allowed me in the building! It didn't matter if I gave seminar talks via MAGIC (a sophisticated upscaled version of Skype for university lecture theatres) instead of travelling in person. It didn't matter if when I was sicker I worked from home in bed. As long as my research got done and the appropriate people got to know about it, at the end of the day it didn't really matter how.

    Unfortunately the illness is progressive. I am now a lot sicker and even with all the adaptations and support in the world I can no longer work. I am still mostly happy. I have found a lot to keep me occupied, albeit with a lot or resting and am never bored.
    However I have encountered the "but can't you just..." attitude I refer to in this blog post. Often it is in fact even worse when people learn that I used to work. "But if you used to manage this, couldn't you just..." After a while it becomes quite wearing, not to mention upsetting.

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  3. The massive problem with work capability assessments is that the point of them it to attempt to prove that regardless of diagnosed medical conditions, ESA claimants are workshy frauds, cheats and scroungers who could all walk, nay dance, that extra mile to the post office were they not so lazy.

    Suggesting that because someone can write a blog post they could also spend a 40 hour week seated at a keyboard typing 100 wpm, is all about twisting evidence to cheat people of their entitlements - as UNUM Provident, the DWP's inspiration, has been doing to its customers for decades.

    If the government wanted to be decent and fair, it would drop the prejudice that all disabled people are criminals, completely abandon any form of WCA, and leave the amount of work any diagnosed sick or disabled individual was able to do, to their own discretion. Benefits could of course be reduced pro rata for high earners (though with the possibility of returning to the safety-net, as used to be possible under IB, should problems arise).

    For that matter, given the horrific death rates associated with the WCA test, there can be absolutely no excuse for Labour not to make it policy to introduce systematic compensation for WCA bereaved families and all disabled survivors who suffered any form of detriment under this regime of democide.

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