If the mark of a civilised society is how it treats its’ most vulnerable people, then we don’t do very well in this country.
In the five-and-a-half years since I became part of the disabled community, I’ve realised just how many hoops disabled people have to get through to be treated in something like a civilised manner; how many obstacles are put in our way by society generally and by the various parts of the state system.
It’s not ideal for those of us with the knowledge, the determination, the wherewithal to fight our way through and around these obstacles; to use t’internet to try to discover what is out there to help us, then have the determination to go out and find it.
I mean finding out what benefits are available, what help and support is available (from physiotherapy to the moral support of just talking to other people in your position), where you stand legally, what the future holds.
If it’s tough for those with the will to do it and who are able to do it, then it’s close to impossible for those without the will or the wit. By the nature of the circles in which I move, most of the disabled people I meet are in the former camp. This week, I was introduced to a lady who is one of the most mistreated examples of the latter that I’ve ever seen.
Her husband, who is in his 40s, had a stroke nearly two years ago. It was misdiagnosed by their local hospital and the lady was told to ‘‘take him home, there’s nothing wrong with him.” Of course, there was something very wrong with him and his health declined until he had another, much worse, stroke a few months ago.
He didn’t know (and didn’t know where to find out) what support and benefits were available and because he was unable to work, his wife had to take on more work and longer hours in an effort to pay the bills. She didn’t know what charities existed to help survivors and their families and again, didn’t know where to find out. Having heard their story, it seems a miracle to me that the family are still together. Remember, figures from the Stroke Association suggest that only 20 per cent of stroke survivors and just ten per cent of carers say they received the support they needed to cope with the emotional aspects of stroke (‘Feeling overwhelmed - the emotional impact of stroke’ published by the Stroke Association in 2013).
This makes me so angry. Stroke changes your life in a zillion ways, affecting your ability to work, earn, shop, get about, your memory and your mood, to name but a few. It is the fourth-biggest killer in the UK and almost two-thirds of survivors leave hospital with a disability. People of working age are two to three times more likely than the average to be unemployed eight years after their stroke.
Yet unless you are willing and able to kick down doors, ask the right questions, make an almighty fuss, you can slip through the gaps in the system, as this family clearly has. To repeat, life after stroke is difficult enough for those of us who are willing and able to engage. What is it like for those who can’t or won’t?
And what does it say about our society that it takes someone like me, just an ordinary citizen but one who has been there, done it and got the brain damage, to help someone who is clearly in desperate need of help and support and doesn’t have the determination to fight through all the barriers which the system puts in front of them?