‘Welfare reform win is heartening, but the fight isn’t over’, The Guardian website, 12 January 2012

January 13, 2012

From the ‘Comment is Free' section, Guardian.co.uk, 12 January 2012. (Words by Rachel Graham).

This week has seen a crucial fight to stop draconian changes to welfare that could have a disastrous effect on the lives of many. The Lords partially overturned the government's push for time-limited support for those on contributions-based employment and support allowance (ESA). This would have meant the loss of benefits after 12 months for all claimants put into the work-related activity group (Wrag).

While the extension of the time limit to 24 months is heartening, it still represents an absolute cut-off point. Unfortunately, some long-term, chronic conditions tend to get worse as people's health deteriorates over time. To end financial support at two years will leave many chronically sick people without a safety net. Many thousands of sick people still face being placed into the Wrag by a flawed medical test currently in use to assess them, and therefore still face a time limit to benefits. We need to keep fighting for a better and fairer medical assessment – one that takes into account the views of our medical professionals and doesn't override them.

The Spartacus report showed that the government ignored key criticisms of the proposed welfare reforms and that campaigners need to keep highlighting this. Alongside this, the pressure also needs to be kept up with regards to time-limiting ESA payments: sick and disabled people who have paid into the system should not be forced into reliance on family by the loss of independent income.

The problem for a lot of us with chronic conditions is the fluctuating nature of our illness and the variety of symptoms. I suffer with ME/chronic fatigue syndrome, and the changing nature of my condition continues to take me by surprise.

One of the hardest things to accept about being ill is the sense of failure it often brings. I feel it every time I miss a social event; every time I have to ask someone to take me somewhere; every time I can't do something as simple as walk my dog. Having an independent income is vital to hanging on to some sort of tattered shred of dignity.

It seems, egged on by the media and government, that we're all medical experts now. Many of us think we can judge the “deserving” sick just by looking at a person. I'm sure that many people who saw me on a good day, makeup on and having a coffee, would think me quite able to work. They wouldn't know that I'd been up the night before in chronic pain. They wouldn't know that I have facial pain due to nerve damage, as well as bladder problems and almost daily nausea. I recently went to my sister-in-law's wedding: it was a wonderful night but I paid for it by spending the next week in bed. Anyone who saw a snapshot of me that night would think I was well. They wouldn't know that I missed my brother-in-law's wedding two weeks later, or that I spent all of Christmas and New Year huddled on the sofa. Some illnesses are less visible than others, but it doesn't mean those with them are fit to work or any less ill: voters and politicians alike need to understand that.

Campaigners face a real challenge in getting their voices heard, particularly in the mainstream media. But this week's events show that it can be done, and I'm so grateful to all those – such as Sue Marsh – who have campaigned tirelessly. I'm going to fight to get my voice heard too. I'll be tweeting, joining the Broken of Britain and doing everything I can to highlight what sick and disabled people are up against. The fight isn't over yet: the government announced on Thursday that they will take the vote back to the Commons.

Right is on our side, this isn't the way any civilised society should treat its most vulnerable members.

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