It might sometimes seem as though disability campaigners are asking you to take an awful lot on trust.
We tell you that we are not opposed to all welfare reform, yet only write about the parts we disagree with. We point out that genuine support to find rewarding employment would be welcomed, but ask you to believe us when we say that it is the system put in place that fails us - and you.
You watch TV programmes and read newspaper reports that claim virtually all on sickness benefits are "scroungers" or "skivers", yet we keep pointing out that in fact fraud is the lowest of all social security benefits at just 0.5%. Perhaps we should spend a little more time acknowledging that many people on sickness or disability benefits would like to work and would welcome the chance to try.
If you happen to be aligned to a Conservative viewpoint, it's hard to continually hear that a policy is not only chaotic and mis-informed, but potentially dangerous and cruel. As a Labour leftie, I know all too well how frustrating it is when you have the best of intentions in government, but face a constant wall of opposition. If you believe passionately that work is the best medicine, it's hard to hear that for some, that just isn't the case.
Nonetheless, when something is wrong, it's wrong.
Employment Support Allowance (ESA, the replacement for Incapacity Benefit) was wrong when Labour introduced it and it's just as wrong today. It was based on flawed assumptions and spurious research. In 13 years, it was the first thing I openly opposed my own party over. It was clear that it would cause great suffering and injustice and I simply could not let it go unchecked.
Worst of all it might just sound like self interest : "Don't cut our benefits, don't make us pay."
Some ask how I (and my campaigning colleagues at The Broken of Britain) manage to write so passionately or find time to research our work, yet don't take a "real" job. Well this is why.
We are making ourselves (more) ill. We are pushing ourselves too far. Daily, we take on too much and fight too hard. Yet at some point a kind of fatalistic "nothing left to lose" attitude crept over us. We don't have wealthy supporters or powerful voices to fight our cause. If someone wants an "expert" for a radio show or newspaper column, it has to be us. There is no-one else. If someone wants an article within the hour on a particularly pernicious benefit story, we have to write it. There is no-one else.
But we're doing it for you too.
Sickness or disability can happen to anyone at any time. You might think that you would cope, work on through, but we who have been there know that sometimes there comes a time when you simply can't. We know that life can change in a heartbeat. That cancer or car accidents, disease or despair can strike anyone at any time - from the CEO who has a breakdown that he thought could never happen to him to the student diagnosed with leukaemia.
We know that skis can come lose or motorbikes can spin into ditches, crushing our hopes for the future as surely as our limbs. We know that defective genes or delinquent organs can lurk as surely in a lawyer as a clerk.
And we know, through terrible experience that when, God forbid, the lottery of life comes calling, you have a right to dignity. Not wealth or special favours, just a little basic provision and a knowledge that we live in a society that won't let you fall.
So, we have to fight. We have to be controversial. We have to grab your attention. We have to find ways to have our voices heard by a media and political class who largely don't want to know. But I just wanted you to know that we're fighting for you too.
Another aspect which I feel is relevant is the "tag team" thing going on behind the scenes. With fairly large numbers of contributors to a blog, we don't need to all be functional all the time. The contributors who are having a better time of it can carry the baton while the ones having a worse time are in bed (or in hospital) unable to participate - although the exact roll call of who is 'active' at any given time changes from day to day, week to week. In this fashion a fairly consistent output is achieved.
ReplyDeleteHowever I think we're unlikely to find an employer who will pay a living wage to a dozen or more people in return for us producing, as a group, one or two articles per day.
I thought I'd spread the word about this blog via Facebook, and see how far I can disseminate the word.
ReplyDeleteThe people who complain that if we can campaign we can can work don't see the reality behind the words on the page. I might be able to put out a well-turned phrase here and there, but no one sees that those words are usually being put together at 3AM, because I'm in too much pain to sleep, while lying flat on my back, because I'm in too much pain to sit, and while typing with one hand because using the other will bump up the pain levels even further. I know that employers won't tolerate that, because that's precisely why I no longer have one!
ReplyDeleteWe talk about the difficulties disabled people encounter in everyday life, trying to find acceptance for invisible disability from those who insist if you can't see it it isn't real (one wonders how they explain electricity ), but on the web all disability is invisible. We can explain the reality when challenged by the ignorant, but sometimes logic and fact aren't enough and there's little you can do for the wilfully ignorant, those so twisted by hatred of disabled people or political ideology that their reality is a different one to that which the rest of us inhabit.
I am very grateful to you all for fighting for both myself and those who do not have the mental or physical spoons to be able to do this.
ReplyDeleteI feel completely battered to a pulp by this WCA and ESA and DLA thing thar I feel like I am less than a nothing to this country - Yes - I am a nobody - I know this fact (If i were a somebody i would not have just become invisible to most doctors and specialists) I guess because I have just stayed here and let things happen and not wasted a days spoons tyo go to hosp to just answer a form on Q's that I have damaged any case I have for disability. So I am a nobody and a nothing. I wish I were a rich one so I didnt need their care.
I hate myself for becoming so weak and stuff when at one point I was the strongest person I knew both physically and emotionally. Now I feel *cant think of words* :-(
Thank You for all you are doing for people like me
I really appreciate this article because it addresses some of the things that I think the public and politicians must wonder when they look at our campaigns. To me it always seems obvious that campaigning for a fairer, more supportive benefits system is relevant to everyone, but I do get that to a lot of people, the idea of longterm sickness or disability is very remote and very coloured by their preconceptions - "*I* would manage much better", when in practice none of us really knows what we'll have to deal with in life, and few people realise just what a domino rally disability is; how one problem leads to another; how the lack of one adjustment, or the lack of certainty about how much you can manage and when, can keep you out of work even if you'd dearly like to be there...
ReplyDelete