My own experience with chronic illness began when I first experienced symptoms of what was later diagnosed as ME (Myalgic Encephalomyelitis). Whilst I was ultimately able to re-enter the workforce, for several years I was reliant on disability benefits. In 2012 I was asked to join a campaign calling for a cumulative impact assessment of the cuts to disability benefits. The War on Welfare (WOW) campaign was started by several disabled people who, like me, were concerned about a number of policies that were then being introduced by the coalition government.
Claiming disability benefits has never been a simple process. But since 2010, disabled people have faced increasing difficulties claiming both Employment Support Allowance (ESA), which is supposed to provide financial support for those unable to work, and the Personal Independence Payment (PIP), which helps with extra costs incurred by those with long term ill-health or disability. Continual reassessments by private companies acting on behalf of the government mean that these benefits may be reduced or lost at any time. If a claimant loses ESA or PIP, their carer also loses the Carer's Allowance and can only reapply for it if and when the claimants benefit is restored.
Other new policies have had sometimes severe consequences. The bedroom tax, officially called the ‘spare room subsidy’, penalises anyone in social housing who has (what it deemed to be) a spare bedroom by taking away a proportion of their housing benefit. Two thirds of the people in social housing are either disabled themselves, or have a disabled family member. So called ‘spare rooms’ are often used to store disability equipment, as a space for a carer to stay, or may be needed if the disabled person's condition makes it is difficult for a couple to share a bedroom. There is also a shortage of smaller properties available for those seeking to avoid the removal of the subsidy.
The Poster for the original WOW petition
The focus of the initial WOW campaign was a petition for a debate in the House of Commons, requesting an investigation into the cumulative effects of these policies. I wasn’t well enough to attend the debate in person in February 2014, but I was able to watch it live and commentate on social media. It was an historic occasion, the first debate in Parliament gained by disabled people themselves by means of a petition. The resulting motion passed by the House called for ‘an independent cumulative assessment of the impact of changes in the welfare system on sick and disabled people, their families and carers’. In addition it called for an immediate end to the work capability assessment, a discontinuation of forced work under the threat of sanctions for people on disability benefits, and to bring forward legislative proposals to allow a free vote on repeal of the Welfare Reform Act 2012.
Sadly no action was taken by the government after the debate. In 2016 the United Nations issued a damning report into UK violations of disabled people’s rights and said that a cumulative impact assessment should be done. The government rejected these findings. It also rejected the European Commission of Human Rights (ECHR) cumulative impact assessment, showing that disabled people are disproportionately affected by the cuts. It continues to refuse to commission an independent cumulative impact assessment of its own.
WOW has not given up. Our new website (wowvoices.uk) was launched and disabled people and carers are contributing their experiences of the cuts and the abuses and mistreatment in the assessment system. Many continue to experience lengthy and stressful delays waiting to go to a tribunal, where decisions can be overturned in favour of the claimant.
We are currently seeking a further debate in the House of Commons, again demanding a cumulative impact assessment, and we have the cross party support that is needed. You can help ensure this debate happens and is a success by writing to your MP about this issue.
Editor's note: Since publishing this post, the sought for further debate on this issue took place in the House of Commons on 19 December. The motion for a cumulative impact assessment passed, but the Government still claims to be unable to do one. Carole continues to campaign online on this issue.
If you would like to share your story, why not get in touch? Email forever@kcl.ac.uk with a short bio and a summary of the story you would like to tell.