Sue Marsh

This article titled “No disability living allowance for me. Nowhere to turn for many more” was written by Sue Marsh, for guardian.co.uk on Tuesday 20th December 2011 17.00 Europe/London

I’m a disability campaigner. I’m not sure I ever intended to be, but I saw the great injustice of welfare changes and how they would hit some of the most truly vulnerable people in our society and couldn’t sit back and watch.

For more than a year now, on my own blog and hundreds like it up and down the country, sick and disabled people have fought a David and Goliath-style battle to be heard. We have no powerful friends in the press to spin our stories, no politicians prepared to speak for us. We have our modems, our keyboards and often a healthy dose of painkillers and a hot water bottle but slowly, and with impressive determination, we have tried to tell the country about our fight. Inch by inch, painful step after exhausted word, we have made our own media, told our own stories.

I’d be lying if I said we had won the battle for hearts and minds. The public are still largely unaware of the huge £9.2bn in cuts to services and benefits that we are facing. They don’t really know that the employment and support system is in crisis, or that disability living allowance (DLA) will be abolished and replaced with a system that looks remarkably like employment and support allowance (ESA), and relies on yet another draconian and flawed disability benefits test. Remember, if the welfare reform bill goes through, DLA will be abolished and 3.2 million people will be transferred to the government’s new personal independence payments. Proposals include yet another level of assessments, cutting existing claims by 20%.

Millions of us are living in terror of brown envelopes arriving from the Department for Work and Pensions. We know that soon enough we will be told that our allowance is to stop as we’ve been on it for more than a year, or that we are to be “assessed” and moved from the old incapacity benefit system. We know that social care packages will be “re-evaluated” and tax credits cut. My envelope shared the joyous tidings of a complete rejection of my claim for disability living allowance. No explanation, just a rejection. I angrily scribbled a quick blogpost and went back to my family:

I am Sue Marsh. Disability campaigner.
With just four or five weeks to go to save disability living allowance, I am working flat out on major research aimed at protecting 3.2 million vulnerable people from losing benefits that they rely on to survive.
I have severe Crohn’s disease. Probably one of the most severe cases in the country. I have had seven major life-saving operations to remove over 30 obstructions (blockages) from my bowel. I take chemo shots every two weeks which suppress my immune system, ensuring that I regularly have to fight infections. Exhaustion, pain and nausea plague every single day of my life. I have osteoporosis and malnutrition. I have had major seizures and a stroke.
Nonetheless, I have just heard from my own disability living allowance application, that it has been rejected.

I wasn’t surprised; I was just one of thousands getting similarly baffling Christmas messages. It seems however, that finally, after all these months, the world was surprised. My post went viral, and is still being read by thousands today. My story, the story of someone people “know” a little, someone they feel they have a tiny stake in after reading my articles, finally managed to convey the horror of these cuts in a way a million words have so far failed to do. The irony of my fight to save disability benefits for millions yet failing to qualify myself seemed to add a final dash of outrage.

I only wish I could tell everyone who read, retweeted and shared my article that I am just one story. It’s not an “admin error”, nor is it an “innocent mistake”. The DWP is not going to come racing in on a white charger to save the day. This is happening up and down the country to people much more sick than I am, people with far greater impairments. It is happening to people you will never hear of, people with no voice, no power to fight and nowhere to turn.

Perhaps the greatest irony is all the thousands of messages from people wondering: “If even Sue Marsh does not qualify, what is to become of me?” Yet if you saw me in the supermarket or walking the kids to school, you might just conclude that I’m one of those “scroungers” we hear so much about. You see I quite often look just fine. No one can tell if I’ve had the chemo shot that day and feel so sick I want to cry. No one notices the limp of pain or the dark circles under my eyes.

Despite all of our efforts, the “disability deniers” at the DWP and the rightwing press are winning. The genuine shock over one personal story, typical of so many others, proved that more conclusively than a thousand articles ever could.

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