The One Month Before Heartbreak blog shows how desperately help is needed to get our message about DLA changes across, writes Sue Marsh in the Guardian
“And my word, did we write. We wrote for our dignity, for our sanity and, in some cases, we wrote for our lives. The posts were astonishing. Some were lyrical, others desperate. They all shared such eloquence, it’s hard to remember that you’re reading ordinary words from untrained writers. This group, who often can’t march or even leave the house, have become bloggers of great talent. Perhaps written words are their only defence against a media and political class unable to hear, see or understand them.
Some tried to just show healthy, able-bodied readers why they weren’t “scroungers” (many work and only receive DLA to aid them continuing to do so) or to explain their conditions and how the cuts will affect them personally. Some were carers, terrified for their children, clients or parents. Some were humorous and heartbreaking, all at once.
Some video-blogged, too. This entry is nearly too distressing to watch, but shows – almost unintentionally – the shocking neglect we now appear willing to accept, and just how many people are found “fit for work” who clearly are no such thing. Perhaps most distressing of all is this from a mental health patient unable to cope any more. What struck me was the matter-of-fact honestly and clarity in most of the posts. If you sit down with a cup of tea and a spare half an hour, you will read stories of great bravery, heartbreaking pleas for understanding, but none whatsoever appealing for pity or claiming that life isn’t “fair”.
And if you haven’t got link fatigue, this is probably the best article any of us have ever read on just what it really means to be chronically ill or disabled. The “spoon theory” was born in an attempt to explain not how it feels to be ill, but just how it is. Picture disability as a bouquet of spoons (bear with me). For every small action you take, you lose a spoon – getting out of bed, showering, eating, taking the bus. When the spoons are gone for the day, they’re truly gone. If only one is left by lunchtime, you eat or you go to bed but can’t do both. Do you wash up or play with the kids? Do you visit a friend if it means you can’t go grocery shopping later on? When do you find the time to be politically active and throw your energy to defend the rights of those who, like you, are disabled?
On top of this never-ending juggling to live our lives the best way we know how, we’re constantly in fear. What if “they” see us? What if “they” stop our benefits, cancel our lifelines? What if “they” take pictures to pass in brown envelopes to “medical assessors” paid by the hour to prove we’re cheats?
As a wise friend pointed out that to truly have an impact on the ongoing debate “you need a mass of people chained to railings in Parliament Square in the freezing cold in February”. And, of course, he’s quite right. For the mainstream to take notice, that’s exactly what we need. But the barriers disabled people face to protest are often insurmountable: we might be bedridden, unable to leave the house. Some of us live in isolation with no one to push their chairs or guide them around Westminster, let alone help them make a journey to London that most would take for granted, but that to us might seem like climbing Everest. Likewise, someone living with agoraphobia or schizophrenia might consider marching on parliament about as achievable as becoming pope. Could it be that it is this more than anything else that makes politicians so confident they can persecute this group with no chance of a backlash?
Benjamin Franklin once said that “justice will not be served until those who are unaffected are as outraged as those who are”. Perhaps you will all just have to lend us your spoons. Or even march for us. The stories at One Month Before Heartbreak show with absolute clarity not just why we need you so desperately, but why it could as easily be your mum, son or wife that needs state assistance one day. In a month’s time, you might find that if that dreadful day ever comes, it’s too late.
There has been inspirational support for the recent “blog swarm” campaign organised by The Broken of Britain, a disability rights group. The One Month Before Heartbreak weekend encouraged disabled bloggers, carers, tweeters and concerned onlookers to come together for three days of blogosphere frenzy in an attempt to highlight the unthinkable pressure being piled upon physically and mentally ill people through a range of cuts that leave us breathless and terrified. The consultation on changes to the disability living allowance (DLA) ends on 14 February and the event hoped to raise as much awareness of the proposals as it could.”
Sue Marsh is married with two small children. She campaigns to raise awareness of hidden disabilities and long term illness. A sufferer of severe Crohn’s Disease for nearly three decades, Sue set up the blog Diary of a Benefit Scrounger to raise awareness of life with a chronic illness.